Journal

Thursday, November 12 : Hanoch is coughing AGAIN and seems to have a cold. Let's hope it stays as a cold.

Tuesday, November 3 : Perhaps distance and journaling will put yesterday's treatment day in a different perspective. I just about boiled over yesterday. Usually, when a nurse does something annoying, like a private conversation on her mobile phone in front of us, I bite my lip and wait till she finishes. This is because the nurse has the upper hand when treatment and Hanoch is concerned. She's the one who's doing the jabbing and taking care and I don't want to jeopordize Hanoch's care. So I usually shut up. However, yesterday circumstances somehow compelled me to speak out. I didn't think about the consequences for Hanoch. I just let rip. A mistake perhaps.
We arrived in at 9.30 to a deserted day care unit, except for E., the auxiliary. She was busy sorting medical equipment. The nurses were away for breakfast and re-appeared at 10 o'clock. At 10.15, nurse M. came over to where we were sitting. She brought the infusion pole with the bottles and bags and her tray of supplies with her. I decided I was going to be nice and offered a "good morning" since she was silent with the "Oh, it's you again face" Then she went off to bring herself a stool to sit on. She had just come back and was turning to Hanoch when another mother suddenly appeared round the corner and started to tell her some story "... and you should have seen how many doctors there were..." They started to get into conversation. Whether it was because we had already been waiting for 45 minutes or whether it was because I was on tenterhooks to get home in good time because I had an afternoon course to attend, I don't know, but I suddenly blurted out in my best school mam's voice if they couldn't hold their conversation till after Hanoch had been hooked up. Well,I nearly got knocked off my seat as nurse M's tongue was unleashed. The phrase that comes to mind right now is "hell hath no fury like a woman scorned" only I didn't scorn her and we're not talking about love. Nurse M. wasn't going to be told by a patient's mother when she would hook someone up or who she would attend to first or who she would talk to first. Who did I think I was? My behavior is not at all nice. She's in charge and she decides what's what. Nurse M. informed me that this mother's child had been hovering at the brink of life and death and she,nurse M., wanted to hear all about it. I had no business to interrupt them. Nurse M. decides who she speaks to and when. After the initial shock at her reaction, I then parried back. But I should have really let her rant and rave because I had already done the damage and she had compounded it and by answering her, it made matters even worse. Of course, the other mom, seeing she had caused chaos, disappeared and nurse M. while sparring with me, was jabbing Hanoch and hooking him up to the infusion. Some epithets as the tubing didn't seem to be connected correctly. Who connected up the tubes???? She had to disconnect the tubing and as a result lost some of the hydrocortisone to the floor. Since she didn't know how much was left in the bag, she had to take it away altogether and bring a new bag of hydro. It was all done in very bad faith.
After that, whenever the machine beeped or the bottle had to changed, Hanoch got up himself and walked over to the nurses' station for one of them to attend to him. I felt badly for him as he is, after all, dependent on them, as I am too. We all are, as a family. I'm still trying to decide if I was right to speak out or if I would have been better to say nothing and let her finish her conversation. It's annoying. It's very unprofessional of the nurse to turn to a conversation with one mother in front of another mother. She should have known better herself. It's not my business to hear the conversation. On the other hand, maybe even if I had said something but in a lighter tone (la dee la dee da) to turn her focus back to Hanoch,it would have been cleverer of me. Or if I had said nothing, it would have been cleverer still. I can't go back in time so what's done is done. I never cared for nurse M. much before this incident, but now she's absolutely finished as far as my opinion of her goes. My only anxiety is that she takes it out on us the next time she's assigned to Hanoch and makes us wait and wait and wait and wait till he gets hooked up.

Sunday, November 1 : Miraculous for a Sunday. There were no traffic jams going in to the hospital and light traffic coming home. We were first in at the doctor and hooked up really fast in the day unit. Nurse Ye. got the venflon in first time after wiggling it a little. Treatment was fine and Hanoch ate well and drank a lot and didn't even sleep.
We asked the doctor about the swine flu vaccine and whether Hanoch should get it. He had the flu at the beginning of September and the batch of vaccines that have come in have the adjuvant. The doctor thinks Hanoch should get the vaccine, but he's going to check with his colleagues in infectious diseases. Will they know about the adjuvant and the CNS LCH though?
There is apparently a group of children/young adults traveling to the US in January and the doctor asked Hanoch if he'd like him to put his name down. So far, Hanoch has declined to go on all the trips that have been offered. I don't think he's keen to join this one either.
Our evening was enhanced with Hanoch's hiccups. Maybe they put whiskey in the treatment.

Monday, October 5 : It was a very quiet day. We had the whole corner to ourselves which was excellent. Hanoch slept for over an hour and I even managed to catnap for 20 minutes. Nurse M. was on duty. She claimed it was too complicated to put the hydrocortisone on the IV (replace complicated with a word beginning with "l" and that sums up the reason why she didn't do it via IV), so she did it slowly and diluted via push. She even rubbed her fingers with alcohol before pricking with the needle (without us asking), so we have come a long way in matters of hygiene. With it being a holiday this week, traffic both going and coming home was flowing, absolutely no hold-ups. Parking was a breeze. Both days we got home in record time. If only it were this way all the time.

Sunday, October 4 : I will bet that this was the fastest treatment day we have ever experienced. Two weeks ago, the office called to say Hanoch's doctor would be on leave on Hanoch's next scheduled treatment and that he would write out the instructions and leave them in the file ready for us to go straight in. We discovered when we arrived that he isn't going on leave till tomorrow, but the instructions were ready in the pocket of the brand new file - part 3 - part 2 had been bursting at the rings. We needed a new prescription so Hanoch and Leslie went on in to the day center and I went to get the prescription. I wanted to say a lot to the doctor, but I said the minimum. There isn't really anything to talk about until we reach the point when he says stop and we aren't there yet even though it goes through my head like the runner strip at the bottom of the news bulletins. Hold your wheest, Rose, hold your wheest. Wait till the time is right.
It was favorite nurse Sh. who came to hook Hanoch up before they started over at the anesthetics where she is always on duty. "Hey, that's a great vein" she says to Hanoch. Poke, and the venflon was in within seconds. Treatment went smoothly. The unit was very noisy. A lot of screaming children and the cutest of little girls, only 2 and a half years old, who had a tube stuck in her throat for suction and who was communicating with the adults around her without talking, hand signals only, like an old lady. The unit is a very humbling experience. You always come away with so many mixed feelings: admiration at the courage of the children and their families, fear of what you know is out there, pity for some of the terribly afflicted, thankfulness for every moment that you have to spend with your own beloved family, praise at some of the nurses for their patience, competence and good humor, and anger at the others for their lackacadaisical work practices. Avove all, you heave a sigh of relief when treatment is finished safely and you can go home.
Please G-d for the strength for another day tomorrow.

Tuesday, September 8 : Hanoch has pneumonia. He was just coughing and coughing and coughing in the way that he does. The doctor prescribed him an antibiotic and prednisone because of the asthma and sent him for an x-ray. He said the pneumonia is mild. I guess that's because it's just starting, so I don't know how much we can trust on that one. Hanoch has been coughing slightly less since he got the first dose of medicine. He's asleep now. We're all worn out. Leslie came home early from work to come with us for the x-ray. I asked the doctor if we shouldn't take him to the hospital, and the answer was, of course, if he gets worse. Well, I don't really want to wait till he gets worse. Leslie thinks he's better in the home environment than in the hospital if he's doing alright and I know that he's right. This time it's my turn to panic although I know the hospital wouldn't do anything else.

Friday, September 4 : Treatment this month has been overshadowed by events following it. On Sunday and Monday, Hanoch was coughing practically non-stop. The oncologist sounded his lungs on Sunday. They were clear and treatment went ahead as normal. Monday was more of the same. His temperature was regular when the nurse took it before treatment started (at Hanoch's request). By the time we got home, Hanoch said his head was heavy and his temperature was sitting at 37.8. I called the oncologist even though it was already 6 in the evening. He said to watch and wait. Leslie wondered what we should wait for - perhaps till Hanoch grows a snout, he joked afterwards. Monday night was a sleepless night for us all. Hanoch's cough had turned into a full blown cold. He spent the whole night sneezing, blowing his nose, coughing and generally feeling miserable. At 6am, his temperature measured 40.2. Hanoch was very tired and weak and Leslie was panicking. After deliberations (i.e. Leslie and I shouting at each other) we agreed it was best to give Hanoch paracetamol, wait till it lowered the temperature and then head out for the ER. The trouble with this is that when you go and they don't see the fever for themselves, they tend not to take you seriously. However, the journey in the morning is long because of the rush hour and typically, it was the first day of school which would hold up the traffic even more. It made sense to get Hanoch feeling moderately better than setting off with such a high fever.
As it happens, they did take us seriously at the ER. They put us in a room at the end and the doctor came in right away. You couldn't mistake that Hanoch wasn't well even if the temperature that registered there was lower. The doctor asked if he had been around anyone with the flu. There are one or two of his friends with flu, but we don't know if it's swine flu or "ordinary" flu. The doctor laughed and said there's no other flu other than swine flu since it's not the flu season here. With Hanoch's rich medical background, the doctor immediately said he would get Tamiflu, but that he would call upstairs to Hanoch's oncologist to check. That is the way things are done in that hospital. The ER doctors do not prescribe on their own without consulting with the oncologist first. A nurse came in some time later with a packet of tamiflu and said we would be released shortly. Interestingly, none of the staff wore any protection and the doctor did not even wash his hands after examining Hanoch! I think it was the most record time that we have ever been in the ER. We were home within two and and a half hours!
The tamiflu is in capsules, so Leslie opens the capsules and empties the contents and mixes it into cottage cheese for Hanoch to be able to swallow them. Thank G-d, his temperature has come down although he is still coughing a lot. Leslie sat up on "guard duty" till 4am two nights in a row. Last night was the first night that Hanoch slept without coughing till he woke us at 5.30 with his inimitable cough.
You can't be too careful with the swine flu as people have got better and then suddenly taken a turn for the worse, so we are keeping alert and will stay anxious till he's completely over it.
Of course, both Hanoch and I missed our first day of school and work. But who cares?

Tuesday, August 18

Happy Birthday to you, Happy Birthday to you...HAPPY 23rd BIRTHDAY!! We thank G-d for your birthday and may you have many many more birthdays in good health.

Sunday, August 9 : Hanoch went for a second BERA test. This time, we went to a private audio testing center. First, Hanoch had a hearing test which was 100%. That was followed by the BERA. The speech therapist did it differently than the hospital. She attached one electrode behind each ear and gave Hanoch heavy earphones to wear. He did the test in the sitting position and alert. The only instruction was not to move. At the hospital, the test is done in the lying position and he is to try to sleep. One electrode is placed at each side of his face roughly where the top of the ear is. Another is placed on his forehead. In short, today's test came out almost completely normal with no missing waves and no huge latencies. I hope this was a reliable test. Basically, it means that either the hospital's test was rubbish or that this one is. We have to assume that it is the hospital test that was unreliable because the doctor presumed that the lack of waves suggested a mechanical/technical failure. It doesn't say much for the hospital. I faxed the result to him this morning. The result comes with the graphs of the waves together with a table of numbers and the speech therapist's comments whereas the hospital result gives only sets of numbers with comments. I imagine he will be pleased to have his interpretation of the hospital test upheld.

Thursday, August 6 : I've been waiting to get our out-of-order computer back from the technician's to update our news, but it's taking too long so I'll just have to clack it out slowly on the laptop. Treatment days are fading yet vivid, but if I don't write it all down soon, I won't remember the details. On the other hand, how can I forget them?
The meeting with the doctor was like something out of the Monty Python Show. He repeated how pleased his team were with the MRI. He enthused over how the lesions don't take up contrast which is a huge improvement and then the bombshell - if the next MRI is as good, he may stop treatment. After 5 years this should be news that makes me over the moon. But I was in shock. What about the diffuse signaling reported on the written result? Nothing to worry about - that shows old problems which are now nothing to be concerned about. (?????!!!!!) That didn't sound right to me according to articles that I've read and I told him that in ND CNS LCH, you can't ignore the signaling. Well, how do you, the parent, tell the oncologist his job? You can't. He knows best. He would have none of it. He left the room to get the notebook from the weekly meeting where they write down what was discussed. Yup, correct - wonderful improvement. When he saw I wasn't convinced, he called the neuroradiologist. Yup, definite improvement, no need to worry about the signaling. It's absolutely nothing. I showed him the written report, plus the two previous ones to compare. That radiologist interprets too strictly. The neuroradiologist says it's fine and that's what we go by. Clearly, he was annoyed I was challenging him.
I showed him the BERA. I also showed him those of 2005 and 2007. He looked at them. Improved! I was flabbergasted. I don't know how to read these, but when it says "No response" in two waves that doesn't suggest improved. I pointed out the NR. Probably just a mechanical/technical fault or error, he said, clipping holes in the pages and placing them in the file. Then the most Monty Pythonesque of all. He wrote his notes in the file. Improvement in MRI, improvement in BERA. His fountain pen scratched over the surface of the paper.
No-one can say how long treatment should go on and if the next MRI looks as good as it does this time, we will stop. I said that at least we should reduce first before the drastic step of stopping which scares the life out of me. Hanoch is happy to stop though a bit nervous. He's happier to reduce first. Leslie didn't say much all of the proceedings, but he said afterwards that I was sitting there like an animal ready to pounce at the doctor.
You would think that if the doctor says things are looking great and we'll stop treatment, it would make me feel elated. I came away with a feeling of huge distrust. I feel he has a hidden agenda (he has hinted once or twice about retirement) and I wonder if he is trying to close the file with SUCCESSFUL written all over it. Frankly, I am really scared because I don't trust their reading. I think the lesions do look better, but why is he ignoring the signaling? What about the BERA?
Later on, I had a huge argument with Leslie who accused me of wanting to keep Hanoch a hostage to treatment and not letting go because I'm too wrapped up in the world of histio. He wouldn't listen to me and took the oncologist's side. I fished out one of Austria's articles and marked out the sentences about the signaling being a hallmark of ND CNS LCH. He refused to read. The next morning when we had calmed down, he agreed to read and then he realized that maybe the doctor was not correct in not listening and not relating and maybe might not have informed himself properly. He also agreed that it was strange the way he was so insistent on how good things look and if he thought there was a technical error in the BERA, then why did he not call the speech therapist and inquire or ask for a re-test.
Well, I really do hope that he is right 100%, but I can't quite let it rest there. I called the speech therapist and she said there could be a technical failure but she did the test 3 times and she feels it is reliable. However, if we want a re-test, the doctor only has to request it. I called the doctor and he didn't sound too pleased to hear me. I told him what she said and he will speak to the neurologist. In the meantime, I've found a clinic attached to our health insurance which does a hearing test and a BERA test, so Hanoch has an appointment there on Sunday. That way we will have a completely independent assessment to compare with.
Treatment on Sunday got underway only after we had sat one and a quarter hours till the nurse hooked Hanoch up. It was nurse Y. who is very pleasant and good at getting the venflon in, so that made up for the long wait. The downside was that she went home before Hanoch was finished and handed over to nurse V. The second bottle had been giving trouble with air in the tube and blockages and nurse Y. had attended to each call faithfully and with a smile. Nurse V. couldn't be bothered and unhooked Hanoch even before the drop tube had emptied all its contents. Nor did she bother to flush the vein. We were so tired and fed up by the noisy and full day, we let it pass, more than happy to go home. Hanoch had a night full of hiccups
Monday was nurse Ye. who hasn't attended to Hanoch in a long time. As soon as we arrived in, she grabbed the bottles of IVIG and had Hanoch hooked up within 15 minutes. "How was that for timing today, she asked?" Leslie later explained that she had been attending to a patient sitting next to Hanoch the day before and she had obviously overheard my conversation with another histio mom that it didn't matter what time we arrive, whether it's 8 o'clock, 10 o'clock or 12, you finish at the same time. The staff is there all day and you're at their mercy. If that conversation helped us finish early, I'm very glad the nurse heard it.

Wednesday, July 29 : It's been a busy month and I thought we were done with appointments for July after the MRI. Not so. On Monday, the doctor brought up the BERA (brainstem evoked potentials) again, so even though I didn't yet have any referral, I decided to call for an appointment. That was on Tuesday, the day after the conversation with the doctor. The secretary didn't have any appointments till well into September. The doctor said to do it as soon as possible, not sure why. The secretary wanted to know some details and when I said Hanoch had just done an MRI, she told me she would put him on standby and in the meantime, send us an appointment for September. Twenty minutes later, she called me back. What d'ye know - there's a cancellation. Come tomorrow!!!! I was then galvanized into action as I had to arrange for a referral (Hanoch's doctor typically wasn't in that day and I had to ask the receptionist to get another doctor to write one) and then I had to run to the health insurance for approval. Smoke was coming out my ears on Tuesday morning.
The BERA is a pretty easy test. The speech therapist attaches electrodes to the head and ears and the wires are linked to the computer that she uses. Hanoch just has to lie still and relax for half an hour. This can be difficult for him as he has to lie on his back and that can interfere with swallowing his saliva comfortably. He was disturbed by it once and moved, but other than that, he did well. The result is puzzling. There wasn't any reading for wave 3 in the right ear and for wave 5 in the left ear. He was supposed to have done a hearing test beforehand but there wasn't time to do one. As far as we know, he doesn't have any problems with his hearing. The therapist called a doctor to come and see for herself and ask what she should write on the report. The doctor asked if Hanoch had any problems functioning on a day to day basis. We enlightened her on CNS LCH and Hanoch's specific problems and she knows Dr B. the neurologist and remembered talking to his oncologist.
When we got home, Leslie's theory was that the electrodes may not have been stuck on properly. Did anyone consider that? My assumption is that they would have checked that and if the other waves had readings, it must show that they were.
It's just another thing to discuss with the doctor and see how it sits with his positive interpretation of the MRI.

Monday, July 27 : Two o'clock in the afternoon, the phone rings. I didn't think much of it forgetting that Monday is the oncology team's weekly meeting. The voice of Prof K.... My heart skipped a beat, I felt myself tensing up and holding my breath. "Excellent news. We're (neuroradiologist, neurologist, oncology) all very suprised that the lesions are almost gone and almost not visible". I started to breathe again and I sqeaked "WOW".
BUT - how does this sit with the written report that we received and that new signal that is seen beside the fourth ventricle? The doctor hadn't seen the written report and didn't know what I was talking about. They had viewed the scans and discussed them at the meeting and the experts are happy with them. That's good enough for him and should be for us. If it was Dr. A who wrote our report, she tends to a very strict interpretation. (???????) I'm not 100% happy with that answer and will press him again next week when we see him. I SO wish we had Dr Grois to refer to and ask another opinion. It's not that I'm not VERY happy to hear good news, but I must hear that the new signal is not something we should worry about by someone who has reviewed it seriously and not glossed over it.
The doctor mentioned the BERA on the phone again and that Hanoch should do it as soon as possible, so I have to call and try and get an appointment for that.
Hanoch jumped on the news and wants to a) stop treatment or b) at least go down to every two months. I'm not enthusiastic about either. I'm frightened to rock the boat if it's steering steady.

Friday, July 23 :Unbelievable, but yes, we got the result of the MRI in the mail - snail mail at at. This is THE fastest that we have received a result in years. The report was written up by a name that we aren't familiar with and compared to last time's very detailed report, this one was sparse in words. Basically, it says that everything is unchanged from the last time which is very good and yet, there is still that niggling worry at the back of my mind (okay, not at the back) about this new signal that is being seen in a different area of the brain from the pons and cerebellum. What I am also not happy about is that this doctor supposedly compared the scan to January 2009 and January 2008 and found no change which is clearly garbage because in January 2008 there was no new finding. The finding was new as of January 2009 and why did she skip the MRI of July 2008 which also had no new finding. I dislike inaccuracies. What is correct and what is not if there are inaccuracies?
Hanoch read the report for himself and is happy with it. He looked at the "no change" and said that maybe he could move the IVIG treatment to every two months. Since "no change" is good for us but still doesn't mean "all clear", I'm not in favor of reducing treatment even though we don't actually know if treatment is doing anything and if it is, why is there a new finding? For the first time, Hanoch put up some resistance: "What, I'll be on this all my life". I didn't answer, didn't know how, and the conversation was dropped.

Sunday, July 19 : The MRI was scheduled for 8.45pm and although we didn't have to wait too long, by the time Hanoch was finished and we waited for the disk, it was 10.45. I didn't get to bed till half past midnight, Leslie hit the pillow at 2 in the morning after being unable to wake Hanoch in the armchair. Hanoch got himself into bed at a quarter to six in the morning. He did extremely well in the MRI machine. They have a new method of doing things. The venflon now gets inserted immediately upon entering the room instead of towards the end. When the designated time comes, the gadolinium gets inserted directly by the machine into the previously prepared vein. No need for the doctor to stop the procedings to carry out this procedure. A small pump was attached at the other side of the MRI machine. Hanoch was to hold the pump and if, by any chance, he felt bad during the MRI, then all he had to do was press the pump and they would halt the MRI and give him any help he needed. He did actually press on the pump towards the end because he thought the tube was leaking. The doctor or technician, not sure which, assured him all was well and it was just that the contrast had begun to flow in and this is probably what Hanoch was feeling. One of the technicians who knew him from a long time ago remarked how improved Hanoch was at lying still. Leslie, who usually holds Hanoch's foot to reassure him, hardly had to do even that. The valium is absolutely wonderful as far as that is concerned. It's a new computer program and the pictures look very clear, excellent quality. We were too tired to look at them in detail last night and I had no time today to look at them either, not that I'm any great expert in reading MRI scans.

Thursday, July 16 : Just as well Hanoch didn't have any holes in his socks since the neurologist whipped off Hanoch's shoes while he was lying on the couch for part of the neurological examination. Dr B. has his idiosycrancies. As soon as we walked through the door, he placed a piece of paper on the desk, drew a spiral and asked Hanoch to draw between the lines, reminding us that this was for the ataxia rating scale form needed for Vienna. I nearly fell off my chair. Ironic, isn't it, that we don't need the form this time. He wasn't at all interested that there was no-one to send the forms to. He had taken a copy of a blank and would continue to fill in the form for himself as a comparison. This sounds excellent, but considering that he doesn't fill in the forms during the examination, how is he supposed to remember all the details. He wrote down one or two jottings on a scrap of paper and asked when Hanoch did his last brain stem evoked potentials test. I couldn't exactly remember, but it's been quite some time. He leafed through the file at 90 miles an hour, couldn't find the last one, so told me to ask the receptionist to find it and give it to him. He wants another one done and wrote down BERA beside his jottings, so I guess we'll get a referral in the mail. He asked briefly about Hanoch's various symptoms, but it was obvious that he was in a hurry. The previous patient had been inside for 45 minutes, so it was imperative to get rid of us within 15. Fortunately, we had arrived 20 minutes later than the time scheduled for the appointment knowing that we always have a long wait and waited we did - for an hour before we went in. That's us for 6 months and like the neuro-opthalmologist, he'll see the MRI after it's done. He has a good chance of that as he joins the oncology team at their weekly meetings.

Tuesday, July 14 : It was the turn of neuro-opthalmology this morning and it was a l--o--n--g morning. The eye department has a great system. They tell a whole bunch of people to come at 8am and once you've waited - and waited - and waited - your turn at the reception (the reception desk is for the whole department, so you wait amongst a myriad of people), you then take your seat and wait your turn for the doctor. We left the house at 7am, got there at 7.50, made our way over to sit outside the doctor's room at 8.20 and waited our turn till 10am. Despite being so early, Hanoch was number 5 on the list. Patients who have to do a field of vision test are sent upstairs to do that first, but even though Hanoch does his field of vision test in a different clinic on a different day, the patients who arrived before him at the reception desk were still taken before him in the queue for the doctor. Hanoch was sitting outside the room with only one other person, but since the doctor only arrives at 9am and starts to see patients 15 minutes after that, the first of those who had gone up for the field of vision test had returned and taken their rightful place at the head of the queue and so on. Drops have to be administered after the first consultation, so everyone goes in and out of the doctor's twice. We eventually emerged from the second round at 11.45. There were two doctors, the head, Dr H., and her underling, who is new, not the same one as last year. She was pleasant and took her time with the examination. We are thankful that everything is stable regarding the eyes and the optic nerve. Hanoch has an MRI scheduled for next week and because the eye department is now fully computerized, she will enter his file and check out the scan and result for herself after he has done it. "Come back in another year." Suits us fine.

Monday, July 6 : When we entered the day clinic this morning, it was deserted except for one other mom and her little boy. Even the nurses weren't to be seen. They had apparently gone for breakfast and only returned at 10 o' clock. Then they continued their chatter for some more minutes. Nurse M. was assigned to Hanoch. She got the needle in first poke but had trouble with getting the pre-medication hydrocortisone flowing. She checked the junction she had made with the tubing, twisted the little key and, when nothing happened, pulled at it. It then came apart with the hydrocortisone spilling out over her hands till she managed to get the tube back into its place. After one or two choice epithets, she got the infusion going and we were started. It was very quiet with only a handful of families. The three nurses did a good job of making a noise instead of the patients. They chatted very loudly amongst themselves and since we were sitting very close to them (our favorite corner having being taken already both yesterday and today), it was very noticeable. Likeable nurse Y., as well as nurse M. attended to Hanoch, fixing up the beeping machine and changing the bottles. Nurse Y. couldn't understand why the air wouldn't go back up the tubing until she discovered that nurse M. had put in the connection upside down into the body of the machine.
One thing mildly annoyed me just as Hanoch's treatment was finishing. A cute little baby had come in. This baby had a tube inserted in her throat. The father asked nurse M. to help sort something in the tubing. The baby started to make noises that sounded like lots of people walking on gravel. The father said they should do suction before they left. The nurses tried one lot of tubing above where they were sitting. They needed two tubes and there was only one, so they came over to the oxygen/suction outlet above where I was sitting. I, obligingly, moved out of the road, but the nurses, very clumsily, (they always seem to be at a loss when they have to do anything more out of the usual), handed over the tube to the father who was standing with the pram slightly beyond Hanoch. He was trying to connect one end of the tube to the end of the baby's tube, but to do this they were dangling the tubing right in front of Hanoch's face as if he were invisible. What's more, Hanoch's infusion pump had been beeping for quite some time, but since the two nurses were preoccupied with this tubing and the baby, and nurse V. was sitting at the nurse's station in front of the computer oblivious to all, nobody was taking any notice of Hanoch and his beeping pump. I had to ask the father to wheel the pram over to the other side of the oxygen outlet and so connect the tubes without interfering in Hanoch's airspace. The nurses should have seen to this from the beginning, but when it comes to something a little out of the ordinary, they are so overwhelmed by the situation and not knowing what to do that they show their unprofessionalism. As it happens the tubes didn't fit into each other anyway, so nurse M., the parents and the baby disappeared round the wall to find another outlet. Once they were gone, things quietened down and nurse Y. unhooked Hanoch and set him free.
Since we've been home, Hanoch has had the hiccups twice. This happens quite often after treatment and we don't know if it's the IVIG that causes it or the hydrocortisone which is supposed to reduce side effects.

Sunday, July 5 : It was good to see the familiar and friendly face of Hanoch's doctor. We talked a little about Dr Grois leaving the world of histio. He thinks that Vienna will be continuing with the LCH and even the CNS reviews because Professor Prayer is still there. He said people expect replies in two days and start to pester but what they don't realize is that the workload is huge and there is a great responsibility to be correct when reading a scan . The radiologist can't just run his/her eyes over it and write a report. Whether you hear worse, better or stable is loaded and carries with it significance. So reading each and every scan takes an amount of time, especially when comparing scans from different years. He is traveling to Austria in the middle of this month, so maybe he will even meet some of the Viennese team / Dr Grois.
We also discussed that we dropped the processing of the claim to the National Insurance Institute for disability and to join a rehab program. He thinks we shouldn't have done this and if we had had problems with the interview with the psychiatrist (a mandatory consultation), we could have turned to him. However, when Hanoch received the summons, he had only 4 days prior notice and two of these were not working days. His doctor was abroad at the time and we didn't think of turning to one of the other doctors for advice as he said we should have done. Anyway, the opportunity is gone now and the claim rests for 6 months. Hanoch has registered for a psychometric course for learning disabled which starts in September and maybe this will help him get the grade he needs to enter a college course.
Finally, Hanoch signed the 29G form which has to go round the Helsinki Committee whose signatures are needed for continuation of the IVIG for another 6 months.
Over at the day unit, nurse Sh. attended to Hanoch. She found the vein immediately even though at first it seemed elusive. First poke and the needle and venflon was in. Hanoch was tense and breathed a big sigh of relief. Then he cricked his neck. False move as he de-tensed or the air-conditioning unit above him? He thought it was the air-conditioning so we brought him sheets to cover up. The place was very cold, very busy and very noisy. We hardly had room to sit, we felt like sardines. The nurses were so pressed that even nurse A., the head nurse, who usually only directs from the nurses' station, helped occasionally and came to change IVIG bottles for Hanoch. Treatment went well and without hitches, even the infusion pump behaved and there was no air that entered. Hanoch had a good sleep too.
As soon as we got home, he was away out, busy with an event at the youth group he goes to. I'm always anxious he tires himself out, but I know I have to step back and let him find his own way.

Friday, June 19 : We have just had confirmed by letter that Dr Grois in Vienna has left the LCH team. This is a huge blow for us as she was the guiding force for us when Hanoch relapsed 7 years ago. It was Vienna who gave us a detailed report on the biopsy of the brain, it was Dr Grois who alerted Hanoch's oncologist to Hanoch's symptoms, it was Dr Grois who urged for treatment to be started and it was Dr Grois who through her unceasing efforts put awareness of the severity of CNS LCH on the map in general. She will be greatly missed by the LCH families. We were informed by Dr Minkov that although the Viennese team would like to continue giving consultations in the future, it is difficult for them at present. The result is long delays for reviewing of images. Basically, he was saying go elsewhere for consultation. I'm not quite sure where we go from here. He suggested Dr McClain who has promised to take up the CNS LCH issues in the future.
I pray from the bottom of my heart that Hanoch remains stable and we will not need to seek out any second opinion. It's somewhat frightening that this safety net has been taken from us.

Tuesday, June 9 : Sunday was once again treatment day. It amazes me every time just how fast that month comes around. We saw Dr N., the doctor that we were with last time since Hanoch's doctor is on holiday for the next two weeks. It took well into an hour to get into the doctor even though we were high up on the list. Nurse Sh, our favorite, passed by in the corridor and took the bottles of IVIG from us in order to already prepare the infusion. That was so nice of her. I wonder if she knows just how much we appreciate that she did that. No other nurse there would do something like that. She is exceptional.
When we eventually got in to the treatment room, nurse Sh. hooked Hanoch up quickly. She is an ace at getting the venflon in. Ironically, it was Leslie who didn't feel well during the treatment. Maybe the place was too stuffy and it was certainly very noisy and possibly lack of sleep could have been to blame as he had gone to bed so late the night before. Fortunately, he revived after a cup of tea.
On Monday there were students and nurse Y. brought one of them to try her hand at getting the venflon in under her watchful eye. I could see that she was really nervous. The nurse reminded her to put on gloves. Her hands were shaking. Under other circumstances I might have felt some sympathy for her, but since it was Hanoch that she was about to poke, I was worrying about him and not her. His face became pale as she tried to get the needle in and didn't succeed. Then nurse Y. took over. She is usually okay at doing it, but she started at a bad angle and she also didn't get it in immediately. She had a good vein and didn't want to give up on it so she twiddled it a bit and then called for another nurse to come and help her. Hanoch had gone considerably pale by this time and I suggested that maybe she should just try another fresh prick. No. Nurse V. twiddled and managed...phew... and Hanoch was hooked up.
After a good sleep, Hanoch woke up to some guests from one of the volunteer organizations who were bringing round a singer who is also doing his military service, so he was in uniform. I'd never heard of him before but that doesn't say much. They handed out a free CD and the singer wrote Hanoch a personal wish and signed the booklet with the lyrics. Then someone took a photo of them. I haven't figured out where we can view this photo but if I find it, we'll put it up with the other photos.
Last week, Hanoch got a summons to the medical committee of the National Insurance Institute. We had applied to the National Insurance on the recommendation of the neurologist who advised that if you pass their medical committee for disability, you are eligible for their courses. We couldn't find out what the courses are that are offered to know if Hanoch would be interested in them or if they were worthwhile, but we went through the motions with the all the form-filling and applications. The letter of summons included a meeting with a psychiatrist. When Leslie saw this, he said NO WAY. There is no way that Hanoch should go through with this medical committee. He has fought his way into everything that he has done up till now, getting letters from the doctor attesting to his fitness for the job despite his disabilities not the other way round. This medical committee will have no idea what CNS LCH is and to have a psychiatrist write a report could take away from Hanoch all the things that he has fought for and that he has now. I imagine that he will never have heard of LCH and not know the first thing about it. Already last time at the hospital, nurse Sh. suggested to Hanoch that he try to find a course that teaches for the psychometric exam (needed for college or university entrance) especially geared for learning disabled students. She knew there was one up north but didn't know of others. Hanoch took her advice and started looking and he has found one in Tel Aviv. It's quite a bit of traveling for a course, but he has signed up. It starts in September.

Monday, May 11 : I'm not on my knees yet despite this being the evening after the second day of treatment. That's quite unusual and means this treatment round was relatively mild.
Sunday, we saw a different doctor. Hanoch's doctor is attending at the ward and by the time it comes around to the next treatment, he will be on holiday. We were disappointed about this, but I suppose we'll get over it. The doctor we saw on Sunday is very experienced and we've had him before. Wanting to make his mark, he asked why Hanoch didn't do the treatment in one day. Six hours of treatment, not to mention a visit at the doctor's and the pre-meds is unthinkable. If we already arrive home in a heap some days, imagine what we would be then. No way. Then he suggested one treatment over 4 hours to minimize side effects further. We're happy with the status quo and we'll stay that way.
Treatment was smooth with nurse Sh., Hanoch's favorite, taking the bottles as soon as we arrived. She had him hooked up in no time. She is always on duty with the children who have to be anesthetized, so we rarely see her now. She is by kilometers the best nurse there. She is super-competent at her job and always with a pleasant and cheerful manner for all the children and their families. She is always interested to hear how Hanoch is doing. We love you Sh! The down side of having nurse Sh. is that even if she hasn't disappeared over to the anesthetics section before we arrive, she does shortly after and that means having to search out other willing souls to tend to the rest of the administration of the treatment. Nurse I. took over. Compare chalk and cheese.
As nurse Sh. was attending to a boy sitting next to Hanoch, the anesthetist, a lady doctor, came to see where Sh. was so that they could get started. The doctor tactlessly commented on the boy's pacifier which he was sucking furiously while Sh. was flushing his port. How old was the boy? What was an 8 year old boy doing with a pacifier? She went on and on and on. Her grandchild was 2 and didn't have a pacifier any more. SHUT UP YOU INSENSITIVE IDIOT!!!! Leslie and I felt like jumping up and smacking her in the face. Nurse Sh. came to the boy's rescue. Hemato-oncology children are special. They are wonderful heroes even if they scream and shout, if they have a pacifier when they're 8 and if they take paracetamol in syrup form when they're 22 years old. Why can't lesser mortals understand that?
Today was a quiet and a quick day. Nurse V can be pleasant if she wants, but it's unpredictable and she has a habit of talking on her mobile phone while caring for patients. She did this with Hanoch (not for the first time this morning too, VERY annoying). It took her three pokes to get the venflon in, so Hanoch's arm will be nicely black and blue. She brought the hyrdocortisone in a push whereas Hanoch now always gets it by infusion. She didn't read the treatment orders where it was clearly written. After a short huffing and puffing, she transferred it into a bag. Nurse D. looked after Hanoch from there on and when it came to the end of treatment and the vein flushing, it was discovered that nurse V. had connected the hyrdocortisone tube where the saline tubing should have been, so nurse D. had to connect the saline to the remnants of the hyrdrocortisone in the dropper. (I'm sure it can't be called a dropper, but I don't know what it's called). Of course, it was all Hanoch's fault because Hanoch likes his vein flushed - I quote nurse V.
Thankfully, we are finished for this time. Hanoch is coughing again. He just got rid of a bad cold last week and it looks like he may be in for something else. Let's hope not.

Tuesday, April 12: Unbelievably, Hanoch's hit the 60th treatment mark. I'm still trying to take it in. Leslie's given him a goal to get to a thousand!
This time, the two hospital days, Sunday and Monday, can be divided up into not-so-nice nurse day and nice-nurse day. Being Passover, we had free-flowing traffic there and back both days. That is a luxury. Of course, everyone had a free road in, so we were 6th in line for the doctor. We were talking about the CNS issues, and the doctor regrets that he probably won't be going to the next Histiocyte Society meeting in Spain since he is going to two other conferences, one of them the SIOP conference which will be in Brazil. Usually, these conferences are held back-to-back and if that were the case this year, he would have gone to the HS one as well. Pity.
Over at treatment, the first nurse to come over was nurse I., not one of the most competent. She didn't put in the venflon (thank goodness), she left that to nurse M. who is quite good at doing the poke but never appears to me to be very hygienic. She rubbed Hanoch's arm where she intended to prick with alcohol and then stuck the needle in lower down! She doesn't wear gloves and I wonder just how clean her hands are.
In the middle of the treatment, the infusion pump beeped and there was another nurse close by, nurse V. She, rather nastily, told Hanoch he shouldn't be eating during treatment because he was bending his arm while eating. The venflon was in the center of the arm between the elbow bend and the wrist, not at the bend itself, so it didn't seem logical that it would affect the drip. Hanoch was oblivious since he had his earphones on, but I felt insulted by her meanness. What does she expect - that he sit there for hours without eating or drinking anything! He usually eats and there's no problem in that and if he does bend his arm, then so what - fix the machine in two seconds and tell him - politely - to be careful.
Come the end of the treatment and nurse I. took out the venflon. Cough, cough - right over where she's taking out the needle. Cough, cough - as if the first time weren't enough. That was the not-nice-nurse day.
Monday was much better. Nurse Y. was on duty and she greeted us with smiles (wow is that a rare commodity among the nurses). It's amazing how a smile makes you feel so much more at ease. She got the venflon in first poke and used gloves too. She had prepared the hydrocortisone to be given in a push, but Hanoch hasn't done it this way for a long time as it makes him feel unwell. She wasn't at all perturbed to change it over and put it through the infusion. An old-new nurse, nurse D. came to help her and get to know Hanoch. Monday was the nice-nurse day and we left for home world-record early. Yeah!!!!
Both days, Hanoch slept well during treatment, looked terribly pale, like he usually does, but recovered well TG and no hiccups at all either evening.

Tuesday, March 17: Hospital went remarkably well, TG. We had a good nurse on Sunday, nurse Y. who is pleasant and has a nice manner. We were taken promptly both by the doctor and by the nurse. The unit seemed emptier than usual and everyone was more relaxed. The doctor wasn't too happy that I had questioned Vienna's reply. They reported a slight improvement (great news!) but made no mention of the new finding that the local report mentioned. His attitude is the same as Leslie's - if you've got a good report, then stick with that and be happy with it. Don't go looking for other things. He feels that the next MRI will be an indication if the finding is still seen there. I am the first one to be happy to get a favorable report, but having said that, I cannot rest at ease if the two reports are not synonymous. So hopefully, Vienna will look again and give us their valued opinion. Even though we finished relatively early for a Sunday, I was absolutely wiped out when we got home.
Yesterday, Monday, there was a student nurse in the day center. When we arrived in, nurse B. asked us if we minded the student attending alongside, but that we'd have to wait as she was still at a lecture. I said yes, but not if we have to wait too long for her and as long as she didn't do the poke to get the venflon in. She waited for the student nurse so Hanoch had to wait over half an hour to get hooked up. However, he usually has to wait anyway. Then, when it came to the venflon, with her back to me, nurse B. asked Hanoch if he minded the student doing it. Hanoch, being an obliging soul, kindly agreed. I was angry because I had expressly told her no to that, but I held myself back from interjecting at a screech since if Hanoch agreed, then I felt I shouldn't be overbearing. Hanoch told me afterwards that he suspected students may sometimes be better than some of the qualified nurses. Perhaps he also felt a rapport with someone younger who, like him, is starting out and needs a helping hand. As it happens, she did it well and the nurse was standing over her directing her. I would say they even took more care than usual. But the question remains, why bother asking me if she had no intention of paying attention to my wishes. The student , a very smiley and dedicated young lady looked after Hanoch all the time and the nurse even told her to take the stats in the middle of the treatment. They NEVER take the stats in the middle of the treatment, so that is very telling as to what they are supposed to do and what they do in reality. The student has to make a presentation next week and she told me she had been intending to do it on leukemia, but she read all of Hanoch's file and has decided to do it on LCH. She asked me if I would sit with her to go over Hanoch's LCH history. I gave her the website address of the HAA to have a look at that too. That's a great victory in the fight for awareness for LCH.
The other small noteworthy piece of news is that there are new, purple-faced infusion pumps which didn't need needles stuck into the IVIG bottles to stop air getting into the tube. Hanoch slept for a whole hour during the treatment. Even when he sleeps at the hospital , he is still usually very tired when we get home.

Monday, February 16: Shattered out my wits, but happy that the day went smoothly. Nurse M. did the poke and she is good at it although she hurt Hanoch by squeezing his arm instead of stretching it. She likes to finish as early as possible so she never flushes the vein at the end, but by that time in the afternoon, we don't complain about that. We're just glad to be released. Hanoch went out soon after we got home. He slept for about an hour during the treatment, so I guess he needs to expend some energy and shake off the day. He's been ordered (by me) to return shortly since I'm always worried in case he overdoes it after the treatment. He never knows himself when enough is enough. Maybe that's a good thing since it gives him that extra push and drive. I have to get some food on the table for our supper because there we live on poor quality pizza but what I really need to do is hibernate.

Sunday, February 15: I'm in a state of torpor after today's wearying stint at the hospital, so this may be only semi-coherent. The part with the doctor was the best since we were first in line. That's the way I like it, always aim for that, but it often doesn't work out. He wasn't at the meeting where the scans were discussed though he said Hanoch's was discussed. He brought in the record book, but couldn't find Hanoch's record listed there (did they really discuss it???). He took the typed report which is the one we get sent. For him the concluding line is the most important and that says that there is no significant change from the last one. That's good. He didn't bother to read all the blurb in the middle. However, I wanted to know about the other, new finding. He concentrated on the words "no mass effect". Signaling where ND CNS is concerned is quite significant (I would think), especially if the local radiologist picks it up. Often radiologists untrained in the subtleties of CNS LCH dodge over these "irrelevancies" and only the experts in reading CNS LCH scans pick them up. He explained it away as a description since with the brain, they can't very well biopsy or look at anything close up "live". So the radiologists use these different types of weighted images to compare the areas and then come up with their suggestions (guesses?) of what this could be. He, too, is waiting for Vienna's reply. He examined Hanoch and then wrote out a list of blood tests for Hanoch since he hasn't done any bloodwork for a long time.
Over at the day clinic for treatment, I breathed fire once more at the head nurse. This seems to be a recurring theme on a Sunday. We sat and waited patiently for the nurse to arrive, but after 45 minutes I started to get restless. I wandered over to the nurses' station and saw that Hanoch's IVIG bottles were still on the counter. I asked nurse A, the head nurse, which nurse was assigned to Hanoch: "Whichever one is available first". I didn't like that answer. He makes up a schedule, so why is Hanoch not assigned a nurse like everyone else. By this time I was breathing fire: "Is he second best that he gets to wait while everyone else is attended to". This got to nurse A. who denied any such thing. Every patient was equal in his eyes. Having relieved the volcano boiling inside me, I sat down again, only to bob up 20 minutes later and wander over to the nurses's station again. "The nurse has been, hasn't she?" says nurse A. "No." I persisted that I didn't understand why Hanoch was not assigned a nurse. He showed me the schedule he had drawn up at 7am where Hanoch's name was clearly typed into the column of nurse Ye. Yet nurse Ye. was attending to others and clearly had no intention of coming our way. He claimed that at 7am when he made the schedule, he didn't know that 3 nurses were going to call in sick. After all, would I like a nurse with a high fever to attend to Hanoch???? Plus he had additional patients written in pen to those who had been booked in previosuly. Circumstances had forced him to change around the schedule which was why whichever nurse was available first would attend to Hanoch. You can't argue with that, so, tail between my legs, I returned to Hanoch where I saw nurse A. sitting on the chair I had been sitting on. We were extremely close to the people next to us which is why I immediately jumped to the conclusion that she had come to hook up the girl beside Hanoch. Luckily, I kept my mouth shut because she was, in fact, attending to Hanoch. She got the needle in on the first poke and she's efficient with how she sets up the infusion pole with the hydrocortisone so that it infused within 10 minutes. She also stayed close to watch it and hooked him up promptly to the IVIG. After that, it was plain sailing TG. Leslie filled us up with lots of cups of tea, but despite all the junk food and the sandwiches it was a long day, and a busy and noisy one. I felt we were like sardines, there were so many patients and parents crowded in a small area.

Thursday, February 12: We got the approval at 6.30 last night after I had been on the phone twice to the secretary. At 4 o'clock she told me the medical committee doesn't work in the afternoon (there was no secretary dealing with drug approvals in the morning when I called!), so she would see what she could do. At 5.45 I called to find out what was happening and she was still hesitant about what to do. I told her that I didn't care what she did, she could speak to the manager of the office or whoever, but it was their fault there was no approval yet because of the way they work (no secretary to deal with it yesterday afternoon or this morning), so they had to fix it and make sure we could release the IVIG from the pharmacy. As it happens, she is a pleasant secretary who always tries to be helpful. At 6.30 she called back to say we have approval for the next 6 months. How she came up with it suddenly I don't know, but it doesn't matter as long as we have it.

Monday, February 9: The saga of the 29G form continued this morning. I called the secretary again and, after keeping me hanging on while she held various other conversations in the background, no doubt all much more important than mine, she put me over to the onc - who obligingly checked his e-mail. What we were waiting for hadn't come in. So I called the secretary back. This time she called the hospital pharmacy which is responsible for passing across the form and she kept me on the line so I could hear the conversation. The woman at the other end said she remembered the form and she was sure it had already been approved - ages ago. She looked in her records and yes - approved on January 25 - exactly 6 days after Hanoch signed it!!!!! Ten minutes after that it was in my e-mail box. Now if that lazy secretary had only checked last Wednesday when I asked her to, then I wouldn't be so harrassed this week. All the documents are at the health insurance as of today, so now we have to wait for their medical committee to give the okay. Only then can we release the IVIG from the pharmacy. We need it by the end of this week and tomorrow is a public holiday. Grrrrr.

Thursday, February 5: I am very frustrated. Every six months we have the same bureaucracy to renew the authorization for Hanoch's treatment. I am waiting for the department secretary to return me the 29G form. Hanoch and the onc signed it last month on treatment day. After they sign it, the department secretary passes it on through various signatories in the hospital (Helsinki Committee) and then it gets forwarded to the Ministry of Health to be approved. The final stamp of the Ministry is the authorization for the IVIG to be used on Hanoch as an experimental treatment. I have been calling -and calling- and calling- the department secretary this week because we can't take the IVIG from the pharmacy without having passed this form onto our health insurance for their approval first. The pharmacy won't release it till they get the word from the health insurance's "Medication Committee". We have one more week till treatment so time is short and I am getting short-fused. I spoke to the onc this afternoon (maybe the form never left the hospital / never reached the Ministry of Health?) and though he doesn't deal with bureaucracy, he said he would have a word with the secretary (she keeps fobbing me off). So I called the secretary an hour later and she told me to call back in another half hour by which time the phone was engaged. After that I kept getting to her answering machine and by then it was 4 o'clock and I knew she had gone home. Really annoying.
I've kept quiet over the MRI results purposefully, not because we didn't get them, but because we got them within a week of doing it and the result makes me nervous. So I rather just ignore it. The radiologist sees something not noticed before, either a new tiny calcification or an old bleed in a part of the brain not mentioned before as having any problems. The word " calcification" frightens me, but luckily I have been so busy with school that I haven't had much time to brood. We have sent the disk out to Vienna for their esteemed opinion.

Thursday, January 22: That's the MRI over for another 6 months. It's a relief to be finished with it because I'm always worried that Hanoch will be coughing exactly on that date - Murphy's law. He got his valium at 7.30 in the evening before we left. The appointment was scheduled for 8.30. He actually went in at 10pm (sounds like an action replay of 6 months ago). He was fast asleep while waiting to be taken (effect of the valium), but suddenly alert when woken. The technician warned him to be very still since they were expecting a baby to arrive in at any time and they would have to be fast with Hanoch. He managed well except for one of the series which they had to repeat. Just as he was finishing, the baby arrived, a teeny weeny baby hospitalized and wheeled in by staff. We waited until 11.15 to get the disk, but it was for nothing because the receptionist said there was a delay, probably because everyone was busy with the baby and couldn't get the disks for the other patients ready, so we left without it and they will post it to us. Like Cinderella, we made it home a few minutes before we got turned into pumpkins. It was disappointing not being able to shove the disk into the computer and check out the scan, but probably for the best since we were all very tired.

Tuesday, January 20: To sum up the two treatment days in a nutshell - highly stressful. I don't remember feeling so browbeaten after the hospital as I felt on Sunday - absolute, total mental and physical exhaustion by the end of the day.
Sunday started out well enough. We arrived in a little later than usual and there were already a few children in front of us for the doctor. In between patients he handed us out the treatment orders so we could begin treatment before we saw him. That was very nice of him, but ironically we weren't any faster for it. We were assigned a nurse who is not a good nurse in my opinion. Nurse I usually avoids Hanoch because she doesn't like to prick to get the needle in. She also once punctured a hole in the IVIG bottle when trying to open it to connect it to the tubing. She wasn't any better this time. The nurses are obviously not that happy that she doesn't pull her weight fully, and must have told her she has to get over the barrier of not being able to do the "poke", so she got a nurse to sit beside her while she poked Hanoch to get the venflon in. She did actually manage it first time and was really pleased with herself. All the nurses were congratulating her. We did too but it was painful and pitiful. I mean, isn't it absolutely ridiculous that we have to praise a nurse for being able to do this???!!! From then on it was downhill. She hooked the hyrdrocortisone onto the infusion pump joined with the other tubes for the IVIG and saline and she had it mixed with a huge amount of water. The machine slowed in the middle and we didn't notice and in the end it took 45 minutes just to infuse the hydro. With the second bottle of IVIG she punctured a hole in the bottle with a needle which she had used to expel air. The first time she tried to put the needle through the bottle to expel air, the machine wouldn't function, so she took the needle out and tried again. We had one of the good infusion pumps where you don't have to join the tubing together to make a spaghetti junction and if she hadn't joined all the tubes together so stupidly, she wouldn't have had to puncture the bottle to expel air at all. What only occurred to me this morning was that she could potentially have introduced infection through the line by being so careless of what should be a sterile solution. That sent me into a panic though Leslie assured me that the effect of that would be instant and Hanoch is feeling okay TG. This nurse is a real incompetent and I may ask that she not attend to Hanoch again. The problem with that approach is that they get their own back on you in some way.
Hanoch received an invitation to join a group going to Switzerland in February. It's for 5 days and sounds very nice. He has been invited before and turned it down. This time he is considering going, but nervous about it. My stomach started churning over. I don't know what is wrong with me. He is 22 years old and I have to let him go, yet I felt sick with fear. It's irrational. He hasn't actually said yes yet and I am trying not to influence him because I know he must make up his own mind. I know he is very nervous about it and is torn whether to say yes or no. I am trying to convince him that he will be fine and will enjoy it but why do I feel sick to my stomach???
Then there was the letter that the doctor prepared for the National Insurance office for Hanoch to apply for disability and be able to join a rehabilitation course. The neurologist spoke to him after Hanoch had met with him a couple of weeks ago and asked the onc to prepare it. He wrote a strong letter and that too made my stomach churn. It's one thing to know all the ins and outs of your son's disease. It's another to see it all in writing. We met with the social worker and she also thinks it is a good idea for Hanoch to apply for disability and rehabilitation. Leslie is not happy about it because Hanoch would have to have his employer fill one of the forms needed to apply and Leslie is worried this will go against Hanoch and he may get fired from his job. It's one worry after another about what the right thing to do is.
We also met in person one of the histio families that I am in contact with. This is the very first time I have ever met a histio family in person in all the approximately 21 years of histio. They are a very nice young couple with the cutest little boy and we are very happy to have met them.
Then on Monday there was a young mother with her 7 month old who is getting chemo. He was in for antiobiotics, but he pulled out the needle half way and the tubing landed on the floor, so they had to stop the medicine. The mother got a terrible fright. The nurse said it wouldn't be sterile any more and she couldn't continue the medicine. The mother was in a state. There were words between two of the nurses on duty, nurse Ye. and nurse M. and I thought they might be in for a punch-up. Nurse M. accused the other of being hysterical. It was unpleasant. Nurse Ye. is definitely the more attentive, concerned and better trained, so if she was over-reacting over something, I guess it was justified. The nurse that attended to Hanoch was nurse M. and she likes to get finished early on a Monday, so she hooked Hanoch up quickly. She got all the tubing done correctly and got all the various bags and bottles running smoothly. She is also good at the poke, but she is lazy. She never comes round to check blood pressure etc. and she doesn't write up the chart as she should do. Hanoch had no chart posted up at all. It's all very lax, especially when the head nurse isn't around.
Some more bureaucracy thrown in for good measure was getting hold of the department secretary to print us out a new form to apply for authorization to continue the IVIG, the 29G form which has to go round the Helsinki Committee. Luckily, I noticed she printed out one with last July's date on it before the doctor and Hanoch signed it.
Valium, I need valium.

Wednesday, January 7: My opinion of the upcoming neurology appointment today was that it would be a waste of time. However, I have to admit feeling a little more empathy towards the doctor than on previous visits. We had to wait an hour and a half to go into the inner sanctuary and I was sure we would be in and out within 10 minutes. Not so. He took the first 15 minutes talking to Hanoch, asking details of what he is doing now. He also made positive suggestions for what Hanoch could do in the future, education/job-wise. Hanoch has been working as a medic in a school for the past year and a half. It's a job that is 5 hours a day, 5 days a week with a minumum wage. It suits Hanoch because he can get up at a reasonable time and the school he works in is a few minutes walk from the house. But it's not a job that is something for the long-term. Hanoch has talked about wanting to be a nurse. The entrance qualifications to study nursing require a certain score in a psychometric exam. Hanoch sat the exam a while ago and scored a lower score than he needed to get. He's not the best of studiers due to his histio-related cognitive difficulties, so, although we are urging him to re-take the exam, at the same time we keep telling him that if he feels passing the psychometric is too much for him. then he should think of something else to do. The neurologist, Dr. B, suggested rehabilitation courses which are offered by the National Insurance Institute. He doesn't know any details, such as what courses are offered, but he said that Hanoch would definitely be eligible for them as anyone who has treatment related disability or disability related to chronic disease can apply. He would need to provide medical documents and pass a medical committee which he doesn't see as a problem. Hanoch doesn't like this idea very much, but it is the first time that I have seen the neurologist actually take an interest. He went through the neurology exam with Hanoch and was pleased that everything was stable. He leafed through Hanoch's file, both the neurology one and the hem/onc file. He pulled out the ataxia rating scale forms he had filled out in the summer, the ones amended by Hanoch's oncologist, and looked at them. Squirming uncomfortably, I explained that Dr Grois had been surprised by the difference between his report and the previous one and we had asked the onc to review the forms. Dr B nodded and looked at the forms closely. Last time he had not filled in the forms while he tested Hanoch and I suspect that when he did fill them in, he had forgotten the fine details. He very likely thought that nobody would ever bother looking at them again. He was actually man enough to admit that perhaps he had not filled them in as accurately as he should have. He said that each doctor has his "norm" (and there I thought it was scientific!), but he will make sure that next time he pays attention to detail. One thing bothered me - he kept muttering "nystagmus". I once asked the neuroopthalmologist if Hanoch had this and she said that he didn't. I should have told Dr B that, but instead I sat quietly because I didn't know what he was looking at on the form. Afterwards when I got home and pulled out a copy of the form, I saw he had ticked that box as normal and the onc had ticked it as "transient nystagmus". Hanoch is very keen on driving, so we don't want nystagmus to be written anywhere especially if he doesn't have it. His next appointment for the neuro-eyes is in August so I'm going to see if we can bring it forward to before his next neurology appointment in July and before more forms are filled in for Vienna. I want to ask the real expert's opinion.
I have recently met someone else who has a little boy with histio in the same department. They were at Dr B for a baseline check-up and he told them that there is a new 16 year old with ND CNS LCH besides Hanoch and another patient. This is news to us. Maybe because there are now 3 ND cases, he is beginning to take the disease seriously. There are also at least 3 other LCH patients, not ND, but "regular" LCH whereas when Hanoch started there, he was their very first and only patient. He was also the first patient with LCH that our onc had seen in 30 years of practice. We have made strides!

Tuesday, December 23: As predicted, Hanoch was exhausted when he got home after the dentist last night. He also had the hiccups all evening, a side effect either from the IVIG or the hydrocortisone, not sure which. It happens after every treatment. He didn't manage to eat much and went to bed at 11 o' clock, unheard of for him. He's eaten so much junk at the hospital over the last two days, missing a meal last night won't have mattered too much,

Monday, December 22: Today was more of the same as yesterday, so for the first time in months (years?) I've nothing to moan and complain about. Can't be possible... There were more candies and more doughnuts, albeit less than yesterday. Two football players from Hapoel Tel Aviv handed out packages of candies. Nurse Ye. did the poke today and she succeeded first time. Nurse B. helped out too - with a smile. I breathe the first sigh of relief when treatment is over safely. I breathe the second sigh of relief when we get home safe and sound. All in all, a good day.
Now poor Hanoch is away out to the dentist (once again) for another filling. We don't usually schedule dentist and hospital on the same day as it's too strenuous for Hanoch. When he has done this combination before, he has ended up sick afterwards. However, he made his own appointment and didn't want to change it. Hopefully, he will not be overtired.

Sunday, December 21: Happy Chanukah! = Lots of sweets, packets of candies and tons of doughnuts. Some policemen came round with soft toys for the little tots. Little do they know that Hanoch collects them for the car, but I guess they thought he was too big to get one. Hanoch did get a coloring book from a group who visited from one of the banks!!!!!!!!!
We have a referral for another MRI and handed the doc the dental report from Hanoch's dentist. He's promised to try and see if he can shed any light on what is happening with his teeth and perhaps if and how it links to LCH. He mentioned asking Dr Grois if she has come across anyone else with such dental problems.
Excellent is the only way to describe the nurses today. Hanoch was greeted by his favorite nurse Sh. who said she was just coming over. Indeed she did, and got the venflon in before we could bat an eyelid. Nurse Ye. who we also like a lot and who is very attentive, came up right behind her with the infusion pump and the hyrdocortisone preparation. When that was finished, without delay, she fixed up the IVIG. Maybe the nurses were aiming to close earlier to get home for candlelighting. Whatever it was, it was a great day. Oh that it would always be like that!

Monday, November 24: Sunday was l---ooooo-nnnnn--gggg while today was, dare I say it, - fast!!! (relatively speaking, of course).
Starting with yesterday, although I should know better after all this time, that to get upset is detrimental only to myself, I had trouble fighting back the tears while trying to stand up for our place for Hanoch to be hooked up within a reasonable amount of time by a nurse. We got into the day unit "on a high" having seen the doctor right away. We actually managed to have a chat with him for the first time in months. We again told him about the ongoing problems with Hanoch's teeth and we have to ask his dentist to prepare a report for the onc who will then talk to a bigwig at the university dental school and see what advice he has to offer. We also again discussed the "where-to" with the IVIG treatments and how long it should continue. He told us he had consulted a specialist in immunology. As the mechanism of LCH is different from the diseases the immunologist normally deals with and that IVIG is normally used for, he can't advise us since it is comparing melons to cucumbers. We have to continue to feel our way. The onc was surprised to hear about a CNS patient in Sweden who has been on IVIG for 12 years because when he reported on Hanoch at the Vancouver conference three years ago, the use of IVIG appeared to be new to everyone present.
Over at the day unit we found a place and made ourselves "comfortable" - that means Hanoch gets an "armchair" while we try to grab any other chair that is available. We also selfishly grab the one and only table so that I can work and where we can have our snacks at leisure. Nurse Sh. came to hook up the boy sitting next to Hanoch with IVIG and signalled to Hanoch that she was just coming to him too. An hour later I wandered over to the nurses' station to find out what was happening. Nurse Sh. had been called away to anesthetics as she is always on duty there and Hanoch's IVIG was still on the counter alongside a whole lot of other files and treatment orders. As soon as another nurse became available Hanoch would get hooked up. When I suggested that this was not quite right since we had already been waiting an hour, the head nurse got on the defensive with his spiel that this is day care hospitalization and priority cases come first. Generally, all the patients are booked into treatment / anesthetics / procedures, even port-flushing, beforehand, so to my way of thinking, the head nurse had got his schedules in a muddle. They also seemed to be short-staffed for the amount of children that were there to be attended to. By then I was extremely tense and in a very sensitive state, not that sympathetic to his sob story, and I TRIED to make our case calmly in front of him even though I was nearly exploding inside. If we were to wait for a nurse to become available, we'd be there another 2 hours before Hanoch would get hooked up. Twenty minutes later, nurse A. came to start the process. Hanoch asked for the hydrocortisone to be IV-ed slower than usual. He had no hiccups at all in the evening, but it's as yet unproven if it's because of that.
I started today in a down-hearted mood, probably partly exhaustion from yesterday and partly from sleeping in this morning which always gets me out of bed on the wrong foot. Despite leaving much later than yesterday, the minute we arrived in, the two nurses on duty had the infusion pole ready with the hydrocortisone and saline and just had to add the IVIG bottles. Nurse M. did the pricking and nurse Ye. brought over the pole. She had a bit of a mishap when the pole keeled over and she put her arm out of joint (ouch!) trying to save it from falling and the precious glass IVIG bottles worth thousands crashing to the tiled floor. The unit was very quiet, only two or three other children compared to yesterday, overflowing with children and accompanying parents, a cacophony of sound and a sea of people. We arrived home in record time and my mood has been restored. Hanoch has been out with friends since we got back, so we'll see if he can keep the hiccups at bay today too.

Friday, November 21: Hanoch woke up with toothache. The dentist fitted him in immediately and another huge hole has appeared. He was at the dentist only a month ago and everything was checked over before he left. The dentist alleviated the pain and Hanoch has to go back for a root treatment. His teeth are literally crumbling to pieces.

Tuesday, October 28: Yesterday was still fairly frustrating as far as seeing the doctor was concerned. He revised the neurology report as he had promised and came over to us while Hanoch was getting the IVIG. He returned the forms with his amendments. However, as I glanced over the forms, I realized that without going over the specific tests with Hanoch himself, even this was a bit "off" in one or two of the assessments. After the treatment was finished, we went over to the doctor's office and I tried to point this out in as diplomatic a way as possible. Well, the doctor wasn't going to change his own amendments despite doing one of the tests with Hanoch and clearly seeing that he wasn't able to do it. The doctor has many serious cases and I felt that I was nitpicking and just being generally tiresome. He's not a neurologist and why should he repeat the job the neurologist should have done properly in the first place? He was also not receptive to Hanoch's symptoms at the beginning and can't really understand how they impinge on his life, even seemingly minor symptoms. As far as he's concerned, Hanoch's doing alright (thank G-d, and we're glad of that and thank G-d every minute of the day for that) and whether he can stand for 10 seconds on one foot isn't really that important. When you see the struggles of some of the kids in the unit, you can appreciate this viewpoint. It makes me feel even worse for asking him to review the report in the first place. I'm going to send it away to Vienna and forget all about it.

Sunday, October 26: Never plan timing the day when it's treatment because it doesn't work out that way - ever. I should know that by now, but never do learn. We were blessed with rain during the night. Rain, especially the first rain, panics the country and traffic comes to a halt. It took us two hours to fight through the traffic, 45 mintues alone just to leave our town and get onto the fast road. All along the fast road, we crawled at a snail's pace. Why, no-one could guess.
Hanoch's doctor has returned, but we barely talked to him. The doctor we saw last time left treatment instructions in the file. Theoretically, Hanoch could have started treatment right away, except that she had added pre-meds that Hanoch doesn't usually get. We needed Hanoch's doctor to take them off the form (not that the nurses bother reading the orders anyway). Somehow, he managed to skip over Hanoch's file and when I saw that we had missed our turn for going in, I barged in and asked him to change the orders, so Hanoch could start the treatment. He apologized, quickly fixed it up and told us to come back afterwards.
An hour later, Hanoch was hooked up. Nurse A. was the lucky nurse assigned. She got the needle in first time, but had to play with it back and forwards - not pleasant. By the time Hanoch was finished treatment, it was the end of the day for everyone and by 3.45 we wound our weary way over to the doctor's office. He, of course, had wearied too and he could barely get a word out without being constantly interrupted. We were trying to review the neurology report of the summer with him, but it just wouldn't go. We left it with him to compare to last year's and see what he thinks. Tomorrow's another day, hopefully, for all of us and maybe we'll get to speak to him then. Enough is enough.

Thursday, October 16 : The continuing saga of Hanoch's teeth: yet another filling fell out a couple of days ago. Yet another trip to the dentist revealed two more fillings needed doing, in addition to the one that had worked its way loose.
It's flu shot season again and Hanoch was one of the early birds this year. He didn't even have to wait in a queue since I don't think many people realize that the vaccinations have started. It's worked out well time-wise for treatment because he shouldn't get it too close to the IVIG. He had his last treatment almost a month ago, and the next one has been postponed for a week due to the festival holidays, so it's an ideal week for the shot. He doesn't like to share these doings with his friends, so he grinned and bore it as they clapped him on the arm when he met them for a get-together. Afterwards, he told me he went "ooouuuwwwww" in his innards. That's the price of being macho.

Monday, September 22 : Thankfully, an uneventful day. Traffic was great, free-flowing, but again, despite arriving in early, and even though we didn't need to wait for the doctor, we still had to wait an hour for Hanoch to be hooked up. Nurse B. attended to Hanoch and she's very good at getting the venflon in on the first poke. We even got a nice smile from her today. She looked more relaxed. I guess we forget that the nurses themselves must be under a lot of tension sometimes. The auxiliary, E. checked Hanoch's statistics and said his heartbeat was slow and she would show it to the head nurse. We didn't hear anything more about it, so it must have been okay. Hopefully, we have some respite till next month.

Sunday, September 21 : It's been a long day and the day's events are a blur. Traffic was flowing, surprisingly, but despite arriving in early, we had an hour to wait to get into the doctor - and we were the first in line. This time it was Dr. W. At our last encounter I rather trod on her toes, unintentionally, so this time, I tiptoed around, my diplomatic best.
Friday, we received Dr Grois' report on the MRI scan, the pons and cerebellum stable, but she made a comment on the pituitary that was not previously mentioned in other reports from Vienna and not mentioned in our local report of this MRI. We are awaiting clarification from Dr Grois on that. In addition, she commented on the huge difference in the neurology assessment of July 2007 and July 2008. Since we have not met with Prof. K. for a few months, we have no-one to discuss any of these issues with. I saw right away that the assessment was "off", but I'm "only" the mother. The other "caretaker" oncologists are kind enough to give Hanoch a check-up and write the treatment orders, but that's about it. They don't go into the fine details. Dr W. read the letter, sounded pleased, and filed it. She searched for the neurology assessment in the file, but when she eventually found it, she didn't bother looking at it. She gave orders for some blood tests which Hanoch rarely does at the hospital any more. She asked about an endocrine profile, but we haven't done that in a long time. Then she wrote the treatment orders. All the other doctors we have had faithfully copy the treatment instructions of Prof K. Not Dr. W. Not only did she write down the usual pre-meds of hydrocortisone and paracetamol, she also added phenergan and pethidine. My hair was standing on end. Better not say anything, shut up, Rose - don't want to offend her. She wrote the treatment orders for next month too - so that we wouldn't need to wait for the doctor so long before getting started on the treatment - thank you very much - shut up, Rose, don't say anything - don't want to offend her. She means well. And, if Prof K. won't be back by the next visit, we will want that, but, hopefully, he will be back and WE WANT TO SEE OUR DOCTOR !!!!!!! WE NEED TO TALK!!!!
At the nurses' station, I cornered nurse Ye. who was at the desk and who is sympathetic. I showed her the extra pre-meds, so she said she would talk to the doctor. That was sorted out and Hanoch got started on the IV after the second poke. The nurse didn't manage to draw blood because of how the venflon went in, so she had to poke a third time with a butterfly just to take the blood tests. After that, all went smoothly. Nurse A., who normally avoids us, came to change the first bottle and nurse B. took over later. Hanoch slept well, more than an hour, though I don't know how he manages to do that as the lights are strong and it was very noisy, a lot of wailing children today. It was also freezing cold, like sitting in a fridge for a few hours.

Sunday, September 7 : "Who'll save the medic?" That's what Hanoch joked when he met me after school to pick me up, but it's no joke. Hanoch started back at his job as school medic this week. He's in a different school than last year, a high school this time and ten minutes walk from our house which is all good. He has a room of his own and he was sitting having a snack around lunchtime and was drinking some of his water when he had a choking attack. We, of course, weren't there, so what I'm writing here is what Hanoch told us later. He managed to get himself across the hall to the janitor's room. The assistant janitor happened to be there and kindly assisted Hanoch to keep calm. TG Hanoch came round by himself. After that, he sat quietly in the janitor's room. Luckily, he had no-one to attend to himself. This is a very frightening thing to witness and I have no idea what the janitor must have thought. Hanoch obviously got a fright although he didn't call Leslie who was at home, nor did he try to call me at school. He hardly ate any lunch when he got home and sat beside me in the evening to watch the news (very unusual). It's a setback after quite a few quiet months when he was beginning to get his confidence back and felt his swallowing had improved a little. He wasn't sure whether he hadn't swallowed the snack properly first or whether too much water had come out of the bottle all at once flooding his throat, but whatever the cause, he has to be extra careful to try to prevent it happening. This is easier said than done. For Leslie and I, the worry and fear is always there under the surface, it just gets highlighted again.

Monday, August 25 : We have been playing the same disk, the Psalms and prayers put to modern Hassidic music, for quite a few car journeys to the hospital, so we measure the length of time of the journey by which number we get to on the disk. This morning was astounding. The whole disk finished just as we parked the car. There was me thinking we would get in really fast being August and the summer vacation and traveling after rush hour. But four cars broken down on the road on the way and one crash slowed the traffic to a snail's pace most of the journey.
Walking down the corridor on the way to hem/onc, we bumped into Hanoch's much loved endocrinologist, Dr. H., who always has a smile for us and who always has time to stop and ask how he's doing, and who was no different this morning. Despite the fact that we haven't met her for a long time, she remembered his name and commented on his light beard and moustache (he's too lazy to shave).
We took a seat in the day center and after about 20 minutes, nurse Y. who was attending to the boy next to Hanoch (same boy as yesterday) shouted over to nurse M. to hook Hanoch up since his infusion takes 3 hours plus (they close early on a Monday thus the need to get rid of us quickly). Nurse M. was not fazed by the threat. "They arrived late!" she shouted back. So our punishment...it took another half hour till Hanoch got hooked up. Nurse M. is not gingerly. Hanoch gasped as the needle went in. "Must have hit a tendon or something". (???) The hydrocortisone was done by push again though she did it slowly. "Time you weaned yourself off the hydro and the paracetamol now that you're used to the treatment." (And the connection to being used to the treatment is.....?????) After that we settled down to sandwiches and tea, me to my book and Hanoch to his music and his slumbers.
He was woken up by a toddler in a pram next to us who coughed once and then started to cry very loudly. Fifteen minutes before this, nurse Y. had connected him up to a new treatment and she told his daddy that she was starting the infusion slowly and it would stop at fifteen minutes because that particular treatment can cause a reaction. The little boy was very red and blue in the face and his little arms were bright red. Nurse M. came over - "It's an allergy." She shouts to E. who is the lady in charge of the supplies and who helps the nurses out by taking the kids' vital statisticis. "Bring the oxygen!". There's a delay. Nurse Y. appears. Shouts again: "Tell E. to bring the oxygen". Nurse Y. starts to take some broad plastic tubing out of a drawer. E. comes with a contraption attached to a bottle. No-one seems to be very sure what they're doing or how to attach the oxygen. It all looks very amateurish. Dr H., duty doctor, has come over and takes the matter in hand; "Bring him over to a bed". The little boy is still attached to the infusion and the machine is attached to the electricity, so they don't get far with the pram. "Pull out the plug!". The cord of the plug gets entangled with the tubing of the infusion. General bedlam, known in Hebrew as a "balagan". The drama was over as they disappeared behind the wall over to the beds. There, they presumably sorted themselves out. If you've ever seen the TV program "Fawlty Towers", the scene was highly reminiscent of the scrapes that Basil would get himself into, except that he ran a hotel and here we're talking about a hospital. Hanoch said he could have attached the oxygen, and I bet he could have too. Just hope you never need the nurses for an emergency.
TG we're home safe and sound.

Sunday, August 24 : This summer vacation has kept us busy with medical appointments and it seems that we haven't hardly had a week without being at the hospital. The advantage of going to the hospital in August is that there are no traffic jams in the morning, so you can leave the house later and still get in quite early. We were given a choice of doctor, so without hesitation I chose the one with the least patients on his list. The receptionist checked which doc had arrived in, so that clinched the deal. It worked out nicely since it was the same doctor we saw last time which gives us some continuity.
Dr. H. wasn't at work last week, so he didn't attend the weekly meeting and didn't know if Hanoch's MRI was discussed or not. We showed him the written report that we had received in the post and he thinks it reads favorably. The radiologist wasn't sure whether the lesion in the pons was slightly better or the slice of the MRI was simply different and therefore the constrast showed it up less, but whichever it is, as long as there is no worsening, we are happy. We told him we always send the disks out to Vienna and he knew that was the study center of the Histiocyte Society (plus points to Dr. H). I spotted the HLH-2004 protocol on a tray in his room, so I wonder if he has an HLH patient. He filed the MRI report, filed the neuroopthalmology report, checked Hanoch, wrote the treatment instructions, wrote a new prescription and we were set.
The day center was busy, but the nurse came over fairly quickly. It was nurse Y. who we like and who is usually good at getting the venflon in. Today she wasn't in good form. The first poke was unsuccessful. The vein ran away (must be the influence of the Olympics). The second poke was even worse. She tried to steer the needle in, pulled it back, pushed it forward mightily, the plastic broke and she hurt Hanoch. If he had been a small child, he would have been yelling his head off. Hanoch takes it all very stoically, with a barely audible 'ow". She called nurse V. to help. Nurse V. tried the other arm with greater success. The hydrocortisone was in a push, so I asked her to do it slowly since it often makes Hanoch feel unwell when pumped in too fast. She started it, stopped for a second, then pushed it all in. I was annoyed, but bit my lip and shut up. He felt alright though looked terribly pale. He slept for about an hour when a group of teenagers came over to where we were sitting alongside 3 other boys. They started doing card tricks. It was very entertaining and we really were flummoxed as to how they always managed to guess the right card that the boys pulled out of the pack.
The new information center (room) was open, so I popped my head in to say hello and came out with my first ever article on LCH in Hebrew. I should frame it! Thank you, A. for your help in retrieving it for me.
Now I need to recharge my batteries for tomorrow.

Monday, August 18

Happy Birthday to you, Happy Birthday to you...HAPPY 22nd BIRTHDAY!! We thank G-d for your birthday and may you have many many more birthdays in good health.

Monday, August 11 : Neuroopthalmology appointment.
The first thing you quickly realize at the eye department in the hospital is that the time given to you for an appointment is totally irrelevant. It's there solely to keep the public from arriving at the check-in windows at a pace the clerks can handle, and it bears no relationship to your actual place in the queue or time you will be taken by the doctor. Yes, you take a number, but that's only for the check-in window. Only once you check in, will you then receive another number and that's the one that decides your place in the waiting room for the doctor. Relax, breathe, take a coffee from the machine, a beigele with or without za'atar (AAAARGH!) or a sandwich. It's a long wait. One mother broke down: "My appointment was for 11 am and everyone is going before me!" No comfort here. When we left the building around 12:30, she was still waiting her turn. Our original appointment was for 10:50 am. Good news for Hanoch. No need for another appointment for another year. But is that because the doctor was pregnant and felt it better to reduce her workload a little, or is it a professional decision? Hmmm. Hope we'll never find out.

Wednesday, August 6 : The MRI was scheduled for 9.30 pm. We were surprised to find quite a lot of people waiting when we arrived. Bad sign. Hanoch had taken his valium pill 10 minutes before we left the house, so by the time we got to the hospital, he was already feeling calm and sleepy. We waited and we waited and we waited. Hanoch fell asleep. One man prostrated himself along the seats and snored happily. When he woke up, he started shouting at the receptionist at the long delay, not that that helped his wife get called any faster. Hanoch was called in at 10.45. By 11.45, I was starting to get agitated. He finally emerged, triumphant, with Leslie. The story was that he was taken in an hour earlier to get a venflon in for the contrast and then sat waiting again in the inner waiting room, only to actually enter the machine at 11.20pm. It was a different machine than last time. It had a clock, so Leslie could watch the minutes pass. Hanoch was still very sleepy and relaxed and kept very still.
The pictures are excellently clear, great quality. I called the secretary to put Hanoch on the list for the weekly meeting to review the scan since his doctor isn't here and we need someone to look at it.

Tuesday, August 5 : I can't remember if I ever update when Hanoch gets dental work done, but if I haven't before, then I feel I ought to start, certainly for myself, "for the record". Hanoch's teeth are very brittle. They are literally crumbling away and we are sure this is a consequence of the LCH that he had in the jaw as a toddler when his teeth were badly damaged. He finished having an urgent filling and a crown done about two weeks ago. Yesterday, he visited the hygienist for his regular 2-3-monthly cleaning. She pulled out a huge filling and another visit to the dentist brings the news of another crown needed and another couple of fillings, unrelated to that. We go to a private dentist, so the cost is huge, but there's nothing we can do about. We are trying to keep his mouth in as good a shape as possible.

Monday, July 28 : Continuing the laid-back attitude, we left the house even later in the morning than yesterday and arrived in for 10 o'clock. Nurse V. greeted us with a smile, got the pole ready immediately and came over to Hanoch: "You're late!".
HA HA. It's verified. Leslie and Hanoch are right. If you arrive in early, they keep you waiting, half an hour, an hour, what does it matter, the nurses are there anyway. If you arrive in later, it gets closer to their going home time which on a Monday is mid-afternoon - so they need to get rid of you quickly - so they hook you up quickly. Magic. Treatment went fine. Hanoch looked very tired and pale and slept during, but didn't complain of anything. Head nurse A. wasn't in today, so there were no identification tags. I can't remember if there was a chart. My head is on go-slow after the hospital. Three new things - new machines that measure blood pressure, temperature and saturation rates and that actually work, a newly opened room, aka information center, housing two computers, books, leaflets and a helpful young lady who showed me that histiocytosis is on her list of favorites as diseases that she can give you information about (yeah!) and a spanking new special effects room housing a giant computer touch screen which the kids can draw on, two large plasma screens for videos, computers with games, and lots of colors and sounds generated by hands and feet as you pass the sensors above.

Sunday, July 27 : Deciding that it's a losing battle leaving the house in good time to finish doctor and treatment day early, I followed Hanoch's and Leslie's laid-back attitude (very hard for me) and we left the house later than usual. Traffic was flowing and we got into the doctor after one other patient. Not bad. Hanoch's doctor is attending at the ward till the end of the month, but we saw him very briefly when we arrived in and cornered him to write a quick update note for our health insurance so that Hanoch will continue to be eligible for all the services he receives. I guess this will be the last time we see him before he goes off at the end of the month on his mini-sabbatical.
We were assigned Dr H. We've had him once or twice before. He's quite exacting, but exudes a lack of confidence which makes us a little uncomfortable. He questioned the dosage Hanoch receives for his IVIG in relation to his weight since it's not the regular dosage that they use for whatever they use it for. We explained he is on a special maintenance schedule built for him, but he called up Hanoch's doctor to make sure. Then he questioned that Hanoch hasn't done any bloodwork for a long time. He can order some if he wants, but in the end he didn't bother. He checked Hanoch, wrote the treatment orders, wrote a new prescription and told us to call the department secretary after Hanoch does the MRI, so that they will have it for their weekly meeting.
Treatment was administered by nurse Sh., our star favorite, and went without any hitches. The head nurse, nurse A. is back from his vacation. Every infusion pole had a chart and every patient had an identification tag. Good for nurse A. for insisting that sloppy ways must change! I had to hunt out willing nurses to help out when the bottle needed changing, since Sh. is always on the anesthetics room duty and disappears in the middle. She reappeared at the end to unhook him and say cheerio till the next time.

Wednesday, July 16 : We have returned to the fold of Hanoch's old neurologist. He is elderly, actually retired (not a crime), but by "old" I mean previous and first. Having seen him retire from neurology, only to pop up again in hem/onc as the specialist in brain tumors and subsequent neurological effects was a shock. He relates well enough to Hanoch and conducts a thorough neurological exam. But that's where the pluses end. His attitude to parents is that they are tiresome nuisances and brainless imbeciles (no pun intended). I won't go into the small details. He agreed to fill in the Extended Disability Scale and Ataxia Rating Scale forms for Vienna later on and will send them to us for passing on. The last page of the Ataxia Scale is a computer-drawn Archimedes spiral that Hanoch is supposed to draw over. When I pointed this out to him, he produced his own scrap paper, drew a spiral and asked Hanoch to draw between the contours. Is this the correct way? It's not what Hanoch did last time. He was told to draw over the spiral. I didn't say a word, knowing that my comments would not be welcome. He wrote an illegible letter for the file, gave a copy to us for the insurance, and we'll see him again in six months time.
Just after we arrived in, I, as usual, had to visit a certain private place. While I was closeted, I heard the booming voice of Hanoch's onc greeting Hanoch in the corridor. I needed to catch hold of him and here I was, typically, in the wrong place at the wrong time. Luckily, although on duty in the ward, Wednesday not being a treatment day and being relatively certain he wouldn't be assailed as soon as he passed through the outpatient clinic doors, he took some time to be in his own room. I managed to get the 29G form for the 6 monthly approval of the IVIG signed by him and by Hanoch and on its way through the Helsinki Committee (hopefully, since the secretary in charge of that was watching the Goldwasser/Regev prisoner exchange on the huge plasma screen at the cafeteria section). He also scribbled us one of his expert letters for the health insurance and gave me his contact e-mail for when he flies off to Canada on sabbatical. Prof. K., thanks x 1,000,000 for your help! We'll miss you!

Wednesday, July 2 : Today was a better day all round - providing we remove the part about the burst vein at the beginning. Hanoch's arm is a nice black and blue. The drive home was ultra-traumatic. Sometimes I think we're better to be stuck in a traffic jam. The traffic was flowing too well and there seemed to be a bunch of madmen on the road, cars weaving in and out at dangerous speeds without keeping safe distances. There usually are, but this afternoon was worse than usual. Hanoch was in the driving seat rattling along in the fast lane. Even when he moved to the slow lane, it was like a racing track. I definitely understand that phrase "my heart was in my mouth". Actually, it was my stomach that was in my mouth. Thank G-d, home safe. Thank G-d, another treatment over and done with.

Tuesday, July 1 : MINDLESS MINDLESS MINDLESS WAITING is the watchword of the day. My mind is a mush, on automatic pilot, emotionally spent on our FOURTH anniversary of IVIG treatment. Idiot that I am, I was happy that we had arrived at the hospital early. The first bombshell was that Hanoch's doctor is on ward duty this month, so we were assigned a complete newbie. Then we discovered that there was a general staff meeting and no-one was starting till 10am. We had arrived at 9.10 which is why I quickly realized I was a stupid idiot. The next bombshell was when the staff meeting broke up. One of the first to come out was Hanoch's doctor. He saw us and came over to greet us. This month is ward duty and immediately after that he is leaving for a two month mini-sabbatical in Canada. To anyone else, this might be no great shakes. For me, that is a bombshell. It's hard to describe why. Call it insecurity. We have known him for the last 6 years (when he returned from his last sabbatical) and he knows Hanoch well. Hanoch has been stable, thank G-d, and I pray every minute of every day that he stays that way. But deep fear niggles and occasionally rises to the surface and when the doctor's away, well, I won't say more. Better just double my prayers.
The new doctor that we saw was very pleasant but so new that my insecurity increased tenfold. He spoke to Hanoch nicely and related well, but he is Dr Inexperience. He's a children's doctor who is doing his specialty in hematology and has only been in the department for 2 months up in the ward. He wrote a referral for another MRI and an accompanying letter for the family doctor since the approval for the MRI must go through him. He browsed on the computer and looked at previous correspondence. When I looked at what he'd written afterwards, it was a good letter, but nothing to do with requesting an MRI. It was a letter suited to requesting a new 29G authorization for the IVIG. He obviously hadn't browsed previous correspondence well enough. Very often, Hanoch's doctor scribbles these types of requests by hand, so there wouldn't be a copy on the computer. I guess I'll not show it to the family doctor. I'll keep it for another couple of weeks when we need to reapply for another 29G. We'll just make do with the regular MRI referral for the family doctor and hope he'll accept that. While chatting to Hanoch, the newbie doctor showed his inexperience by going into detail about the side effects of the IVIG and how it can cause shock. Just because Hanoch told him that he gets pre-medicated and is a first aid attendant when not at the hospital getting his own treatment, doesn't mean that the doctor needs to share all the scary details and ins and outs of the treatment with him. He told him that there are other pre-meds that almost anesthetize you while getting it and since Hanoch hadn't felt so well a few times, if he weren't to feel well this time, he should let him know. That scared the life out of me because on the whole, Hanoch's onc is one who does not go for heavy medication, nor does he discuss medical details too much, being of the old school. It's not that I live in a bubble and am unaware of these things, I just don't like being reminded of them in such a way, nor do I fancy Hanoch drugged up by an inexperienced doctor.
We got to the day center at 10.30 and it took till 11.40 for Hanoch to get hooked up. It was nurse Sh., our favorite. Volunteers had come to help pass the time, first an elderly man who came and sat beside us and chatted and then a group of soldiers, one of whom sat with Hanoch for two games of draughts and one of backgammon. Outside at the cafeteria area, someone else had tons of fresh flowers and was arranging them into bunches to hand out to everyone. It smelled like a flower shop. Atchoo. That's all I needed, being allergic to flowers.
Just as we got to very close to the end of the treatment, Hanoch said he felt queer. I looked for Nurse Sh. but she wasn't around. Nurse A. was attending a child next to Hanoch. She always avoids us, and would have done so this time too, had Hanoch not called her specifically. His infusion pump had been beeping a few minutes earlier, but she went in search of beeping infusions elsewhere, strangely missing his. I wasn't too happy about involving the nurse at all since I didn't want the newbie doctor coming and ordering some strong medicine just as we were about to leave. Nurse A. got someone else to measure his stats. All registered within normal range, so Hanoch calmed down. He looked extremely pale, and he had been sleeping and was woken by the cellphone, so that might have had something to do with it. The last lap of flushing the vein and we were free to go - 3.30pm, home 4.30pm, another world record. S_ C_ R _ E _A_ M______ And Dr Newbie asked why we didn't do the IVIG all in one day... S_C_R_E_A_M____________

Sunday, June 1 : Such an unbelievably long day. The last few treatments seem to me to be breaking world records in length. We didn't arrive in any later than usual, but there were already seven people in front of Hanoch for the doctor. By the time we had reached the head of the queue, the doctor was on the phone. The nurse was calling him to inform him that one of his patients was anesthetized and waiting for him. So it was a quick scribble of the treatment orders and another quick scribble for a new prescription and that was that.
Over to the day center and another 45 minute wait for the nurse to come. The nurse assigned was nurse V. who, on the surface is pleasant, but from previous experience with her, is easily distracted and not attentive. Everything went smoothly for the first bottle. Towards the end of it, a new girl arrived with her parents. The nurse, nurse V. had to draw blood and insert a catheter for her MRI. She sat patiently by the girl while her parents cajoled, persuaded, appealed, begged, coaxed and threatened. Every time the nurse made a move to start the procedure, the girl pushed her off, pushed her mother off, pushed her father off. One of the psychologists was sitting there too though she was more like a stooge, not proferring any assistance. This went on for what seemed like an eternity, more than half an hour, till, in the end, nurse V. had to call in reinforcements and nurse B. did the dirty work while nurse V. and the parents held her down writhing and screaming. This perturbed us all who were sitting in the vicinity. Hanoch had been asleep, he looked very pale, but he was alright. The girl and her parents left for the MRI and relative quiet reigned once again. When it came to the second bottle, nurse V. had to be sought after. Then the machine started playing games and beeping every few minutes. Nurse V. was elusive. Eventually she was found and dragged over. The psychologist re-appeared to talk to her while she was attending to Hanoch. Nurse V. is not good at doing two things at once and just after she left Hanoch, the machine started beeping again. She was still talking to the psychologist and by that time my nerves were raw and my patience worn thin. I went over to them and asked them icily to stop their conversation and attend to Hanoch properly. Well, that won't endear me to the nurse, but I don't care any more. We sit there politely and wait our turn for hours on end, but there's a limit to that, even for me. Record late time - left the house 8.30, arrived home 4.30. Tomorrow, another day.

Thursday, May 22: "No tooth fell out today". How's that for an on-waking declaration? Yesterday, Hanoch woke up spitting out two small "stones". On closer inspection, one looked like a filling and the other, a piece of tooth. Sure enough, one of the front teeth at the bottom had pieces missing. Hanoch has had very weak and brittle teeth for a very long time, but usually they come to pieces during the daytime when he's eating. It's the first time it's happened while he was sleeping. Somewhat scary to think he could have swallowed it, knowing the trouble Hanoch has with swallowing at the best of times. A visit to the dentist has Hanoch looking forward to a root treatment (already started) and a crown since there is very little tooth left. There may be some other fillings to follow.

Tuesday, May 20: We have had a lot of back and forward between the onc, Vienna and the neuropsychologist. When I called the neuropsych to ask for Hanoch to be tested again, she said it wasn't worth doing another neuropsych evaluation on Hanoch because at his age the differences are minimal. Vienna wants one done for their statistics and to monitor Hanoch's continued response to therapy. So the onc told me to forward Vienna's reply to the neuropsych. It took her so long to reply, I thought she didn't get my letter. However, we received an answer at long last and she will put Hanoch on the waiting list for after August (read November/December). The longer the better as far as I'm concernced because if it's not in the summer holiday, then it's a nuisance for me. I was hoping she would just ignore it, not having heard from her initially. Wishful thinking.

Monday, May 6:Today wraps up another round of treatment for Hanoch. Yesterday we had a newish nurse attend to Hanoch, so our hackles were up as to how she was going to pan out. She's been there some time already though we've never come into contact with her closely. She started with a comment on the paracetamol and why Hanoch doesn't take the pill form, the hairs on the back of my neck were rising. However, she redeemed herself by bringing the hydrocortisone ready for infusion right away. Wow - she even reads treatment orders. Another tick in her favor when she got the venflon in on the first poke and Hanoch didn't even feel the needle go in. After that it was plain sailing and she attended well to Hanoch. Nurse Tz. is now on Hanoch's "wanted nurses" list for future treatments.

Monday, April 7:Today it was my (Leslie's) turn to be with Hanoch for treatment day. It was the nurse versus technology. It took two nurses, the only two on duty, and three IV machines before Hanoch was properly hooked up. For some reason, perhaps a leak in the IV tube, the first one caused a problem. Also, it seemed to be even more of a problem to find the right spot in Hanoch's arm to insert the IV. The nurses usually place some cotton wool by the needle to absorb the dripping blood, but not this time. Blood dripped onto the chair and the floor. One of the National Service volunteer girls had to clean it up - great way to spread disease. I noticed that there was also blood on the computer mouse pad nearby. But that wasn't Hanoch's. Must have been one of the other patients that got hooked up earlier. Yuck! The National Service girl cleaned up that too. It was hard to find a nurse when the machine's alarm went beep. At the end of the treatment there was no nurse to be seen, yet again. So Hanoch, in frustration bent the tube and set off the beeping alarm - at full volume!!! They were surprised that the machine had such a loud beep (and so were we).
When there were no nurses around things did get a little out of hand as the National Service girls decided to let off steam with a water fight with a little boy using syringes - without the needles of course. It started out as a game of doctors and nurses, clever idea as it put the child's mind at ease. It reminded me of the film "One Flew Over the Cukoo's Nest". But then it deteriorated to a whole lot of fun - even to the point of using a latex glove filled with water. Escalation!!! By the time the nurses returned from their lunch, all had returned to normal as if nothing had taken place, except for the wet faces, wet clothes and that one pool of water on the floor they forgot to clean...
It was a good thing that Hanoch had gone to one of the parties organized for the over-18s a few weeks ago, as now the volunteers were much more friendlier to Hanoch than before. They even played Hanoch a game of Sheshbesh (backgammon) and Damka (checkers). After that, Hanoch played another small boy at Trivia. Hanoch lost, what a surprise, but the three treatment hours went really quickly for both of them. And after all isn't that what this is all about?

Sunday, April 6: Today was the start of another round of treatment. We got a brief letter from Vienna on Friday afternoon telling us that everything is stable on the MRI. The recommendation is to continue with treatment, do a full neuropsychology work-up in 6 months time and an MRI in another year. The doctor's computer was down, so he couldn't see his letter. He read the one I had brought along and made no comment other than that I should find out how best we can organize the neuropsych tests. It's problematic at the hospital as the waiting list is long and Hanoch is over the age where he needs it for special dispensations at school and these children get priority. We didn't discuss the length of time till the next MRI. Up until now, we have been doing it every 6 months and I prefer it to stay that way. We'll sort that out in the summer when the 6 months will be up.
The doctor's visit went quickly. No so over at the day unit. We waited over an hour for Hanoch to get hooked up. It was nurse Ye. who we like, but it was terribly slow. She did the hydrocortisone via the IV which Hanoch now prefers, but that takes longer and he only started the actual IG at 12 o'clock. We had arrived at 9.30! It was a long, busy and noisy afternoon and we got home around 5pm, exhausted. Well, maybe Hanoch was less exhausted since he went back out again to meet his friends. He had had a good sleep during treatment.

Friday, April 4: From super-low we soared to super-high with Ronit's wedding on Sunday (March 30). It was a very special ceremony and a beautiful wedding, very happy. The bride was radiant. I know I'm hardly objective, but it was a lovely day. We should all only have joyous occasions to celebrate.

Friday, March 28: It has been the worst week I can remember for a long time. On Monday when I arrived at school, I learned that one of my 12th grade students was in the ICU, unconscious, sedated and on a respirator with meningitis. Last Saturday night the whole school had turned out to see her play the lead role in the 12th grader's performance. On Wednesday, we were at her funeral. This is the 3rd year that I have taught the class, and it has hit me to the core, sick to the pits of my stomach. Here was a girl, fully healthy and yet suddenly struck down. We cannot understand the will of G-d and what His plan is. We can do nothing other than submit to it.
Hanoch drove me to the funeral and waited for me since I was a wreck. Afterwards, he drove to the Herzliya Marina where he had been invited to join an over-18s evening from hem/onc with the national service volunteers. He called us from Tel Aviv to say he had taken a wrong turning and had ended up in Tel Aviv, so instead of driving for about half an hour, it took him two hours to finally find his way back to Herzliya. Not being one to give up, he found the group who were on a boat that was docked. A few minutes on the boat was enough for Hanoch to make him feel seasick and his head spin, so he managed to say hello and get a gift of a couple of mugs and a football, courtesy of Nike, before he had to get off the boat. He missed the meal which didn't matter since he wouldn't have been able to stomach it any way.
Now we are on the final gearing up for Ronit's wedding. Hanoch is coughing and I pray that we all get through everything safely and healthily. Strange thing to write about celebrating a wedding? That's where I'm at. Sorry Ronit, for never being there enough for you.

Monday, March 10: My brain is addled and I can't think straight, but it was a fairly easy treatment day. It was nurse M. who never reads the doctor's instructions. She brought the hydrocortisone in a push even though the doctor had clearly written that it was to be given via infusion. Being too lazy to go and change it, she pushed it in slowly and with lots of water through the infusion. She brought the paracetamol as pills, again not reading that it was syrup she was supposed to bring. I don't know how many times Hanoch is told by the various nurses that it's about time he learned to swallow pills and it's extremely annoying. I don't know if it bothers Hanoch, but it certainly bothers me. Fortunately, nothing could faze the nurse and spoil her buoyant mood. Last night, quite by chance, we watched a program that we never normally watch. Its subject was following two children over 7 months, one, a boy, undergoing a bone marrow transplant and the other, a girl, with a brain tumor. Just what we needed after a day at the hospital. However, since we spotted "our" department in the girl's film, we decided to stick with the program and watch. It was nurse M. who was filmed hooking the girl up to her infusion. Hence her excellent mood at her leap into the limelight and instant fame. Initial hicccups out the way, treatment went fine and Hanoch felt alright.
There was a very young baby sitting close to us with a lot of doctors round her at the beginning. One of them was the neurologist that Hanoch has seen for the past few times. He came over to us, shook our hands and enquired after Hanoch which was very nice of him.
One of the dads who was there works for the "Nike" company and was giving out caps to the boys. Hanoch now sports a new, bluish-gray "Nike" cap.

Sunday, March 9: After Hanoch braked in the nick of the time, just avoiding whamming into a car on the fast road on the way to the hospital, we arrived in safely to be first at the doctor. We weren't rushing to get there first, but Hanoch's youthful adrenalin seemed to be in high mode this morning. It was a routine visit. Vienna received the MRI but has not yet reviewed it. The doctor told us that both our hospital radiologists that usually review Hanoch's MRIs know Professor Prayer, neuroradiologist at St Anna's in Vienna, and speak very highly of her.
Over to the day unit for treatment where we got our favorite nurse Sh. She gets the needle in without anyone, including Hanoch, noticing too much and is such a pleasant person. She was the first nurse that looked after Hanoch when we started there 5 and a half years ago and has been the same lovely person and efficient nurse all that time. Obviously, we can't hog her and she's usually on duty for the anesthesia patients, which has its downside when she disappears off and we're left to beg other nurses to fix the machine when it beeps or change bottles. Today that section finished early, so she was able to come and finish looking after Hanoch. He was very pale through treatment but didn't sleep. There was a lot of tumult around us and one particular little girl nearly had me bursting into tears. She must have been around 7 years old, very wise as to what was about to happen to her so that when the nurse came to put Emla cream on, she started crying. It wasn't just any old crying, or even screaming which we are "used to" hearing quite often. It was a heart-wrenching cry of extreme fear. Her mother tried to bribe her with promises of gifts and money, but this wasn't about what she could get out of the situation. She knew the Emla meant upcoming treatment and its consequences. No gift could override that fear.
Hanoch drove home, but at a much more sedate speed and exercising the necessary precaution.

Monday, February 18: Good news! Hanoch won his appeal to continue working as a medic. Leslie accompanied him, but stayed outside while Hanoch had his interview. He was in and out in a few minutes. This occupational physician read the letter from Hanoch's oncologist and said he didn't understand why the previous occupational physician had turned Hanoch down. He said they need more people able to do first aid and be on the ambulances, not less. Leslie said Hanoch came out of the doctor's office grinning from ear to ear. I was at school and I called Hanoch as soon as I finished. He put on a miserable voice and pretended his appeal was unsuccessful. I am very gullible. I believe anything Hanoch tells me. My heart sank. I was overjoyed when he burst out laughing.

Monday, February 11: The day started early and Hanoch got nurse Y. who is very pleasant and efficient. She infused the preparatory hydrocortisone very slowly which added half an hour on at the beginning before even starting the IG. However, that's better for Hanoch as it's less of a shock to his system. The nurse got the needle in on the first poke. Hanoch even remarked how unusual it is that he gets away with two days of treatment and only two pokes. He felt tired during the treatment and slept. The heat at the hospital is terribly oppressive and the hot and cold water bar was broken. I had to go round to the nurses' room and take water from their water bar since there is no way I can spend 5 hours in there and not have my hot drinks. (Yes, I do make for Hanoch too!) It was just a little embarrassing to walk in when the nurses were sitting having their lunch and I bumped into Hanoch's doctor at the same time. He usually leaves at 11am on Mondays, so that was a surprise. I have come home with another headache, I don't know if it's from the heat in the place or from tension, not that there was a lot to be tense about other than being there. We finished late despite starting early. Tonight Hanoch has a first-aid course in another town which he will drive to. Fortunately he takes treatment better than I do.

Sunday, February 10: It seems upside down to be so absolutely wiped out from what must have been one of the easiest doctor/treatment days in many months.
We were first in at the doctor's, arriving pretty much around the same time as he did. He had a couple of students sitting in with him so he was in good form. I don't think he'd heard that the CNS protocol was closed but he quickly parried that the researchers had a number of other ideas up their sleeve and threw the name of a drug at us that I'd never heard of. I don't know if this is correct or if he was impressing the students. As far as I know, tracrolimus is the new drug being hyped at the moment. If I understood right, he said that after a certain type of bone marrow transplant (nothing to do with LCH), tracrolimus is used together with IVIG. The conversation was cut short when he got interrupted, but what he did say was that there are more unknowns than knowns. What treatment to use and how long to use it for is the great unknown. There are nothing but question marks. No answers. He hadn't seen the MRI result, so he's ordered it to be discussed at the oncology team meeting on Wednesday. Hanoch's appeal for his job is next week and he offered to personally talk to the occupational physician if Hanoch gets turned down again. We appreciate that a lot.
Over to the day center and Hanoch got his favorite nurse, Sh. for treatment. One poke and the venflon was in. He looked very pale during the infusion, but he felt alright. A new psychologist came round and enquired who our social worker is. None. Who our contact person is. None. I was feeling lethargic and couldn't be bothered getting enthusiastic. I explained that we had all that when we first started there almost 6 years ago, but we're now part of the wall decorations. I'm signing off to go and wilt in peace and quiet.

Monday, February 4: Neuroopthalmology appointment. Leslie went with Hanoch. The eye department has changed the system at reception. When Leslie and Hanoch arrived, they had to wait in line with 30 people before them. It's a very stupid system because all these people are for various procedures, doctors, tests etc. It meant that Hanoch got into the doctor one hour after his scheduled time since it took them 45 minutes to wait in the reception queue. It was a different doctor who was on duty on her own. She works in tandem with Hanoch's doctor, but Hanoch usually gets the head doctor. She picks and chooses her patients, so I guess we should be honored. Everything is stable, back again in 6 months time.
From there they went over to the MRI department to pick up a copy of the disk and get our written reply. Good news for us. No change from the previous scan. We looked at the pictures on the computer. It was a different machine and the pictures are smaller and not nearly as good quality as the previous scan. As long as the result is okay, we're happy.

Saturday, January 26: Hanoch's MRI was put forward from 9pm to 8.30 due to a cancellation. This meant that he didn't get the machine that he is usually scanned on. He was suitably valiumed and calmed and since he was the last customer and the technicians and office clerk wanted to close up, he was in and out in 25 minutes which is absolutely record time. Leslie always accompanies him and reported that the tech never stopped the machine once except for at the end before they inject the gadolinium. Typically, there was some kind of fault so that we couldn't receive our immediate copy of the scan. As soon as we get home, we like to view all the pictures and see what they look like. We are deprived of that and will have to wait 10 days to 2 weeks for the result.

Sunday, January 13: I just suddenly realized that we're at 2008. It seems like we've been at the hospital for an epoch.
We prided ourselves on being in early. Hanoch even got to carry his own file in to the doctor who hadn't arrived yet. This is highly unusual as the files are always brought in by the secretaries as if the patients or their families are going to steal them and run off with them. We were first in when the doctor came. Nothing much to discuss, and then over to the day unit for the treatment.
The nurses were at a staff meeting, so they only started trickling in at 10 o'clock. Hanoch got hooked up at around 10.45. He got nurse V. who is relatively new. She rose sky-high in our estimation when she managed to get the venflon in absolutely spot-on and super-fast. Leslie said it never hurt him at all while even Hanoch hardly noticed it going in. All went well the two hours of the first bottle, then came the time to change bottles. By that time nurse V. seemed to be distracted and when we called her over, she was on the cellphone which she handled with one hand, shoulder clasped close to ear while the other hand stuck the needle into the new bottle in order to prevent air getting in. She was barely paying attention to what she was doing and had just turned to go, all the while still talking on the phone when I noticed that the juice was dripping out of the bottle onto the floor. We had to try hard to get her attention, so engrossed was she with her phone call. She should have never put in the needle until the bottle had started to empty somewhat. Lucky it wasn't something serious, but she fell with a resounding crash to rock-bottom in our estimation. I considered whether to complain, but couldn't make up my mind if this would be better or worse in the long run. Fortunately, everything went smoothly otherwise, but it was a late finishing day and by the time we got home, we had chalked up 8 hours. Beddie-bies for me. That's all I'm fit for. Hanoch, well, he's away out. Treatment again tomorrow.

Wednesday, December 19: Hanoch got a phone call from Itamar who is the person directly in charge of him in his job. He told Hanoch that management received the occupational physician's decree that he is not fit to work and therefore Hanoch cannot continue working in his present job. Yesterday we faxed in all the documents to appeal the decision, a letter from the oncologist, a letter from his family doctor and a letter written by Hanoch himself. The secretary called today to say that a meeting with a different occupational physician at a different location will be arranged. Until there is an answer to the appeal, Hanoch can't work in his job. This is a huge disappointment for him and for us.

Sunday, December 16: It wasn't such a tiring day for treatment today despite the constant tumult going on around us.
We arrived in early though were already third in line for the doctor. He had another very nice letter of appeal ready and signed for Hanoch to send in to the occupational physician. He also wrote a referral for an MRI. Luckily, my eye caught that the sticker label on the prescription was not Hanoch's birthdate and on further inspection was not his name either. So we quickly got that replaced. This is the second time there has been a mix-up with the stickers and if we hand it in that way to the pharmacy, then we'll get nowhere other than a runaround back to the hospital to get a new prescription. That's all we need. Hanoch has a very bad cold with lots of sneezing and coughing, so the doc checked his lungs and then away we went to the day unit for the IV.
It was nurse Y. who attended and she came to hook Hanoch up very quickly after we arrived in. We like her as she is an attentive nurse, takes her job very seriously and relates nicely. However, it took two unsuccessful pricks till the venflon went in. It was an uneventful infusion, thankfully and we finished by 2 o'clock which is fairly world record for a Sunday.
Now that our two-month long teachers' strike is over, I feel awkward about immediately taking the day off tomorrow, so Leslie will take Hanoch in for treatment. I feel torn between going with Hanoch and my duty to my pupils and I don't like that feeling.

Tuesday, December 11: Hanoch has been dealt a blow by the occupational physician that he had an interview with yesterday. He had to have this interview to be declared fit for his current job. His oncologist wrote him a very nice recommendation and he took along his latest MRI report which was favorable. However, this wasn't good enough for this doctor. I can see that someone interviewing Hanoch for the first time may not be convinced that he is able to do the job. However, the proof is in the pudding and the fact is, he has already been doing this job for the last few years. He has volunteered in the ambulance service for the past 5 years and has been working as a school medic for the last year.
It's very ironic because if you go to the National Insurance Institute to try for disabilty, you have to go before a doctor who has to pass you as eligible. People have terrible trouble to pass these committees. Now here is Hanoch trying to work and he can't pass that either. It doesn't matter where you are when bureaucracy is in charge, you can't win. Hanoch was devastated when he came out the interview. He was so shocked, he couldn't say anything to the doctor. Leslie was waiting for him outside, so they went back to get a form to appeal the decision. We will mobilize Hanoch's doctor to try to help him with another letter.
It doesn't matter what Hanoch has tried to do in his life, he has always had to struggle and beg to be accepted. It's absolutely not fair.

Saturday, December 1: Friday morning, 1.30am, Hanoch woke us up with his sudden coughing. There are some coughs that you can turn over and go back to sleep with. There are others that cause you to leap out of bed from sleeping to waking in a split second. This was one of them. It was the same choking cough of Monday afternoon. This time he got out of it better and quicker. Usually, Friday nights Hanoch is away out to meet his friends till late. Last night, he decided to have an early night, so we all went to bed at 9 o'clock and slept solidly till 8 o'clock this morning. That was GOOD. He didn't cough today. That was even BETTER.

Monday, November 25: Hanoch had a choking attack this afternoon. He had been asleep on the chair. He dozed off after lunch and suddenly awoke coughing. His saliva, which normally dribbles down his shirt when he's asleep, must have overwhelmed his throat. He got into a spasm and couldn't get his breath. When his eyes start to roll, you know he's in difficulty. It was frightening. I just stood there like a dodo, not knowing what to do. He waved me away from him and signaled me to open the window which I did. It wasn't the worst attack he's had, but it was bad. He was very pale and shaken after it and we just sat and cuddled quietly for a while till he got himself back together (and me). He was still coughing a little, but little coughs. He still felt something bothering his throat and it took some time till he settled. These episodes are always a setback and it takes him time to regain confidence.

Tuesday, November 20: Sunday was the start of another course of treatment. Hanoch's doctor, Prof K. was still away on holiday, so we had to see a different doctor, Dr. N. who we have been with before. Although we saw him wandering around the corridor with a cup of coffee in his hand, he didn't actually start seeing patients till about 45 minutes after we had arrived. Luckily, we were first to be taken. One of the national service girls was sitting in with us. A new system has been introduced where the doctors have to enter the treatment data onto the computer. A new program has been set up for this. I got a bird's eye view of it since I was sitting next to the girl. Dr N. is an older doctor, the most senior in the unit and also the deputy head of it, but he doesn't know how to work this new program. Hence the girl, usurped from her duties keeping the children amused was now assigned to typing in medical data. Imagine an 18 year old Hebrew speaker who is suddenly told to type in "langerhans cell histiocytosis". Even an English speaking medical student unfamiliar with LCH might have a problem with that. I saw that she was having difficulties copying "langerhans" correctly from a handwrittten page that Hanoch's doctor had scribbled something on and kept in the file. You would get a gold medal if you could decipher that handwriting. Not wanting it to be written in for posterity completely incorrectly, I reached over and typed in the whole name for her. The doctor went over Hanoch's swallowing difficulties and choking incidents and she had to type that in too, this part in Hebrew. To her, Hanoch probably looks in best shape compared to some of the kids there, so I could see she was shocked and looked troubled. It's not fair to ask these girls to be the doctor's personal secretary. As a parent, I feel it is a breach of medical confidentiality. After all, these girls are there to cheer the children up, not as medical personnel and it is beyond their scope and even possibly their maturity. One of the national service girls told me later that they take it in turns to be his typist and they dislike it and resent it.
As if to get his own back on Prof K. being away and us being dumped on him, he recommended that the IVIG be given over 4 hours to minimize further the side effects. Three hours is long enough. Four, gulp... Silence....
In the day center, we got nurse M. who is quite good at getting the venflon in, never wears gloves and who has a generally lazy attitude. She forgot to put half the things she needed to bring on the tray, so had to go back and forward a few times. Hanoch asked her to put in the pre-med hydrocortisone push slowly as it sometimes makes his heart beat faster and he feels funny with it. She admitted there were new regulations to give the hydro through the IV drip. Helloooo!!!!! The syringe being ready for use and the nurse being a lazy b...., she took extra care to push it in very slowly and mix each break with a water syringe. Boy was I annoyed. We decided to compromise on the 4 hours and set the infusion pump for somewhere in between 3 and 4. The nurse didn't have a problem not carrying out the doctor's express instructions, surprise, surprise.
Monday was a very quiet day, not many customers. Even Sunday had been relatively quiet compared to what it usually is. Hanoch got nurse Y. who we like, but she was unsuccessful with the venflon and after two pokes called nurse B. over to help out. She got it in right away. The hydro was given via IV. The downside to IV delivery is that it took over 20 minutes, then the nurse had to be hauled back to start the IVIG infusion, so, in total, it added another half hour onto the proceedings. The upside is that Hanoch did not look nearly as pale during the treatment as he usually does and he even didn't sleep. Nurse Y. agreed that 3 hours for the IVIG would be okay since that is what Hanoch usually does.
The clown "Pupik" came around. He is the talented clown, compared the lady clowns who don't manage to get the children laughing much. Some of the kids actually cry when the ladies are around doing the entertaining. There were 2 little children beside us and their laughter was infectious. One little boy had had a temper tantrum on Sunday when the nurse hooked his medicine to his port. This same little boy was a different child giggling away at the antics of the clown and taking part in his banter.
That's us for another month.

Monday, November 12: Hanoch has been struggling his way through another bad cold and worse cough. His new remedy is tea with honey and his cough has miraculously improved slightly. We've still some way to go...

Thursday, October 25: Well, we heard from Vienna much sooner than we expected. There WAS a mix-up and they apologized for the confusion. The mastoids are fully aerated and there is no problem there. It's all to the good because Hanoch has already had his ears cleaned out and done a hearing test with an excellent result. Vienna compared the MRI done in October 2004 to the last MRI and sees an improvement in the enhancing lesions in the cerebellum and pons although the major lesion in the pons remains. Also, they see subtle neurodegenerative changes in the basal ganglia not visible before. Leslie suggests that this may simply be the result of improved MRI equipment and the improved quality of the pictures over the last three years. That's something I hadn't thought of. Maybe we have to put that to the doctor. The recommendation is to continue with maintenance treatment. I wish I could sigh relief.

Tuesday, October 23: Sunday and Monday saw us at the hospital once again for treatment. Both days went well, but were extremely long. Sunday, we had to wait an hour to get in to the doctor and at the day clinic, an hour to get hooked up. The meeting with the doctor went quickly because everything had already been said in our e-mailing and phone conversations. The hospital radiologist checked the MRI again and stands by his reading of it. He also said that the mastoid is clear and fully-aerated. There is no evidence of opacification. He has suggested that someone gave the neuroradiologist in Vienna the wrong series of MRI to read. Vienna has promised to review the scans again this week and study the clinical data that was sent in and will then send a comprehensive report and recommendation. Maybe we will hear something by next week.
Monday is usually a quiet day, but not this Monday. There were quite a lot of children and the nurses were busy, so again, it took an hour for Hanoch to get hooked up. It was a new nurse, nurse V. who seems quite pleasant. She administered the hyrdocortisone differently. Normally, Hanoch gets it in a push whereas she gave it in a bag to go in via the line. This was actually better in that it drips in slower and is less of a shock to Hanoch's body. The downside of it was that I had to go hunting for her when the bag finished so that she could start the IG infusion. That meant more time was wasted because by that time she had moved on to another job and we had to wait for her again.
In between, the dreaded clown came round, but it was a different clown than usual and this one was rather good. There were four little girls beside us all rolling plasticine into animal shapes at the table and he engaged them in his sketch and got them all laughing. We were all laughing. For once, it was funny.
Both days we got home at 4 o'clock and despite the fact that we had done nothing all day, I was wiped out. Even Hanoch went to bed early both days, so even though he rarely admits to being tired, he must have been.

Wednesday, October 10: This morning in the e-mail, we got a very prompt reply and detailed explanation from Dr G. in Vienna about the mastoid opacification and its relationship to LCH. Thank you, Dr G. for taking the time for us. Armed with the MRI report from Vienna and this e-mail, we went to the ear, nose and throat specialist in the afternoon. (Thank you to the head of the Teachers' Union for declaring an open-ended strike and giving me some spare time to attend to medical matters!) The ENT read the reports and checked out Hanoch's ears very thoroughly. She took out tons of wax and said that everything looks fine. To be perfectly sure, she is sending him for a hearing test and a tympanometry test. I also spoke to Hanoch's oncologist earlier in the day and he is going to talk to the radiologist about the MRI report. Oh, and Hanoch got his flu vaccine. He told me that everyone waiting in line for the nurse was elderly except for him. One old lady even turned to him and told him that he shouldn't be there, it wasn't for his age!

Tuesday, October 9: We got a reply from Vienna. It has left us puzzled. Their neuroradiologist sees the lesions as slightly worse and noted an opacification of the mastoid, whatever that means. The radiologist here reported that there was a great improvement. How come the two radiologists have come to such different conclusions about what they are looking at? We have left the question with Hanoch's oncologist. So far, we have no reply.

Monday, September 24: That is our two days of treatment over for this month. I can hardly keep my eyes open, but I will do my best to report the days' events.
Sunday, we arrived in early and managed to be first in line at the doctor's. We haven't been able to be at the top of the league for quite a few months, so I felt glowing with satisfaction. (Our rival Dad for the doctor's list was hovering in the background, but we were FIRST). I had all the completed neurology assessment forms, the ones for Vienna and the same ones copied for the doctor to put into the file. I was disappointed that he didn't even bother to look at any of the forms. Even when I pointed out the results of the BERA and presented him with the last report done 2 years ago to compare, he didn't show much interest. He filled in the form he had to complete and then asked us if we would send all the documents to Vienna. I should get paid as a medical assistant.
He also brought up the subject of the immunologist again, although this time it was a different name than the one he had mentioned previously. The way I understood it, this immunologist is going to be working alongside in the department, so he wants to introduce Hanoch to him. I pointed out that he wouldn't know much about LCH, but the onc was not to be put off. By the end of the day, we still hadn't met the immunologist, so it's not clear if and when we will meet.
Treatment got underway shortly after we arrived in at the day care unit. Our favorite nurse Sh. hadn't yet disappeared to the anesthetics section where she is usually stationed, so she got Hanoch hooked up quickly, efficiently and smilingly. The trouble with Sh. is that once she goes off to her post in anesthetics, she is no longer available to fix the infusion pump when it causes problems and to change bottles. Then we have to go begging whichever nurse is willing to help since we don't know who really was assigned to take care of Hanoch. Some time in the middle two girls came round with a huge bag of lollipops and went round handing out their goodies to each child. These two girls just happened to be girls from Hanoch's grade at school and in the same youth group. One of them sat next to him cross-legged in their kindergarten photo so many years ago. Hanoch was very pale through treatment, but he felt alright and that's what counts.
Monday's treatment went nicely too. It was Ina, the lady who normally is in the room taking the finger pricks blood test, who came to do the venflon. I have never seen her do this before as usually it is only the nurses on the floor that do this. However, since there are only two nurses on duty on a Monday, not counting the head nurse who doesn't do very much in the way of practical nursing, they must have enlisted Ina's help. Not to mention that Hanoch needing a poke is off-putting to some of the nurses who are not that confident in the art and prefer to access the ports and catheters. Well, Ina was world-record fast and very good and Hanoch never even felt the needle go in. Nurse Ya. came to administer the hydrocortisone and then hook up the infusion. She couldn't manage to get the infusion pump working until Hanoch showed her how to correctly fix the plastic tubing in the slot. He should be appointed an official member of the team. It was quite busy for a Monday, especially since there was a new child beside us. First, there was the little boy and his parents. Then a couple of relatives arrived. Then a grandma. Then another couple of relatives - uncles, aunts. Then another grandma. Then a grandpa. First the mother was in tears. Then the father. Then the grandma. Then the auntie. So it went on. I guess they'll get used to it quickly enough.

Sunday, September 9: BERA (Brain-stem evoked potentials) test. Leslie went with Hanoch for this one.The test itself was an easy one - uneventful.
One thing I am not happy about with the result is that the right side seems to be worse than the left side whereas 2 years ago, it was mainly the left side which showed delay. What is the meaning of this? Was the electrode not in Hanoch's ear properly? Is his hearing in his right ear defective? (Sometimes I think he doesn't hear well, but that might be because we're talking between rooms.) We need to wait for some expert advice on this one. The recommendation at the bottom of the page was "continuation of clarification". Hmmm...

Tuesday, September 4: School is back and I had forgotten what it was like to feel overwhelmed from all directions. My free day today was taken up with Hanoch at his neurology appointment. The neurologist wasn't too happy to see all these forms to fill in. He took one look at the doctor's referral and left the room, referral in hand, for 10 minutes. He seemed in a good enough mood coming back. He questioned us as to what had been at the previous appointment with him because the file he had in front of him was last updated in 2003. That explains why when we first went to this new neuro doctor, he said the file was incomplete and not well kept. We blamed it on the old doctor whereas it seems there are two files floating around simultaneously. He thinks this is because of Hanoch's age. He started as pediatric and then turned into adult. The archives center which houses all the files couldn't handle this complicated issue and the result is two files. Funnily enough, it was the pediatric file that turned up today. The department Hanoch attends is pediatric neurology, but the doctor told us that they don't normally have "kids" Hanoch's age. The doctor did the neuro exam and filled in the forms on the spot which is the right way of doing things since last time he filled it in afterwards and I have no idea how he remembered what to fill in. While the doctor was writing up his notes in his own file, I asked him if the examination was fine. "No" nearly caused me to topple off the chair, but he hurried to say that it wasn't fine in any other exam he had done, but Hanoch is steady-stable which is very good.
We learned that the old neuro doc that we didn't like too much (but who is more pedantic and thorough in his examination) and who has retired, has managed to come back in. He has a new niche carved out for himself as part of pediatric neuro-oncology. He is out of the neurology department where he had to retire from and now sits once a week in pediatric hematology/oncology. The next neurology appointment we are back with him. I think our new neuro guy has had enough of us. He told us that the hem/onc patients like Hanoch have chronic problems and the old doctor sees only 3 patients in a morning and takes the time to do the examinations, follow-up and paperwork that is required for this population. The new doctor has a much more pleasant manner so from that point of view I am sorry we have to change back. The problem is with the attitude of the other doctor. He is of the old school, hides all the documents from us and only communicates with the oncologist. Also, his writing on letters is illegible which means that even if I see documents, I can't read a word of them anyway. Next appointment, Dr B., here we come...

Thursday, August 23: Hanoch had one of his choking attacks. He hasn't had one of those for quite a while and I was hoping they were a thing of the past. That would be too good to be true, I suppose. He told us about it when he got home from his duty at the ambulance station. He was there volunteering and it happened while the crew was sitting at the station, luckily, not on call at that moment. Hanoch was taking a break and having some water when all of a sudden he choked on it and went into one of his spasms. The driver of his ambulance ran to get oxygen and they were yelling at him if he had an inhaler. Hanoch waved his inhaler around, but couldn't do anything with it. He managed to come out of it without assistance, but I guess his fellow crew were a little shocked. Hanoch claimed they said he turned a pink color. I'm not sure about pink because he's usually pink, more like that bluish hue or else why run for oxygen. I'm relieved he is okay and I'm happy I didn't witness it!

Tuesday, August 21: Sunday was treatment day and annoyance day. The meeting with the doctor turned out as predicted. His pride and ego have been hurt by Vienna "telling him what to do". He doesn't want to be compelled to do tests that he doesn't think are necessary. Here we are, back at square one with LCH. The doctor is at his best when acting as fireman, but when it comes to looking for smoldering embers, follow-up and maintenance, forget it. And with LCH, there is a lot of follow-up.
However, despite his grumblings the doctor has promised to look for the necessary forms, the Ataxia Rating Scale and Extended Disability Scale, so that we can ask the neurologist to fill them in after Hanoch's neurology work-up. He also acquiesced to the BERA test, BERA = Brain Stem Evoked Potentials even though he didn't feel any point to it. Hanoch last did that one 2 years ago and since Vienna had mentioned these tests, I wanted to make sure that they were on the "to-do" list.
I find it hard to understand the doctor's attitude. After all, we're the ones asking for Vienna's advice. It doesn't seem to me to be so terrible that they are asking for a detailed description of Hanoch's current situation. It is us, and not the doctor, who will have to do the running around to accomplish the tests. It is the neurologist who has the most forms to fill in (if he is willing) and all the oncologist has to do is to write letters of referral and send off the collected data when it is ready.
The doctor's brilliant suggestion was that we take a pleasure trip to Vienna and go to see Dr G. ourselves. If I thought that a trip to Austria would help us, then we would do it. But such a meeting with the doctor would not be a substitute for all the follow-ups and assessments that we still have to do in an ongoing way. He complained that he has a heavy workload and does not have the time for all this lengthy assessment and reporting. He was clearly piqued by the letter he had received. I don't want there to be any rift between Hanoch's doctor and the Vienna specialist because such a rift would be detrimental for Hanoch. So we play a delicate game of trying to soothe everyone's rufffled feathers and egos and keep everyone happy.
Another bone of contention that day was asking the girl in the social worker's office for a parking pass. Hanoch is not an oncology patient, so we can't have one. We get one-way reimbursement for a taxi, other public transport or gas expenses for the car from our health insurance, so why should we not qualify for a parking pass. I had never even thought to ask until I heard someone else mention it. The bristles in my neck were stiffening. Who was this girl to be judge and put Hanoch into a category? The girl remained adamant. Not only are we second-class citizens at the doctor, we are also second-class citizens in the social worker's office.
Treatment went well both Sunday and Monday. The venflon went in on first prick both days. Sunday was very noisy and busy, Monday we started and finished world record early. Hanoch looked pale during treatment and for a little afterwards, but felt alright. I, as usual, am wiped out.

Saturday, August 18

Happy Birthday to you, Happy Birthday to you...HAPPY 21st BIRTHDAY!! Dear, sweet Hanoch, May you have many more HEALTHY and HAPPY birthdays.

Monday, August 13: We just got a letter from Vienna. They will only review the MRI if Hanoch's doctor supplies them with a complete clinical overview and details of therapy. I think we have been there before! Another delay to frustrate us.

Sunday, August 12: We celebrated my birthday with a short break to Jerusalem. The highlights of our visit were a tour of the Western Wall tunnels and a visit to the archeological excavations, the "Burnt House" in the Jewish Quarter of the Old City. The "Burnt House" was the home of a priestly family in the Second Temple period and is now housed within a new house of its own. An inscription found on a stone weight bears the name of a family of priests, Kathros, mentioned in the Talmud. The archeologists found remains of the house walls, floor, a ritual bath, and pottery, coins, stone vessels etc., charring which was evidence of a great fire, a spear and a skeleton of a woman's arm and hand found on a stone step in what would have been the kitchen. There is a short movie shown there too. It was very moving as it showed how the family living at that time period would be and how the Romans destroyed the Temple and then one month later conquered the Upper City where wealthy people and priestly families lived (and which is now the Jewish Quarter). The people were slaughtered and the buildings set on fire. At the end, the movie shows the Israeli soldiers conquering the Old City in 1967 and how the biblical prophecies of children once again playing in the streets are being fulfilled.
The tour of the Western Wall Tunnels was spectacular and very emotional. These tunnels have been excavated by archeologists to reveal what has been hidden for centuries. The underground tunnels run the length of the Western Wall that you cannot see from the outside. As you continue the walk, you reach the point exactly opposite the Holy of Holies. This is the point where the Dome of the Rock, the Moslem shrine is now, built right above the Holy of Holies and the Foundation Stone on Mount Moriah where Abraham took Isaac for the near sacrifice. We stopped there to say prayers. It is said that the Divine Presence never leaves the Holy of Holies. It was an awe-inspiring experience to pray there and to feel the link between ourselves and the people who walked here before us 2000 years ago on their way to the Temple. The huge stones at the bottom of the Western Wall are Herodian. The lower part of the Wall discovered in the tunnel is magnificently preserved and one of the stones is massive. It is hard to imagine how the builders got the stones in place. There are glass parts in the middle of parts of the tunnel pavement from time to time. You walk over them and can look all the way down to further underground levels. It is amazing and scary looking all the way down. The tunnels lead out into the Moslem Quarter, so the tour group was accompanied by guards as we walked back round to the Jewish Quarter.
The weather was beautful for walking. It was 28 degrees, but because Jerusalem is in the hills, it is low humidity and so very pleasant. Nights were actually cold for us at 18 degrees. I had taken a cardigan with me, but neither Leslie nor Hanoch had anything warm so we stayed indoors in the evening. We were too tired to do anything anyway after so much walking around during the day.
Our little holiday was all too short, but it was a wonderful break from our daily tensions. Now I will start obsessing about our upcoming hospital visit and practising all the scenarios, none of which will actually resemble the real one because it is impossible to predict what trick the doctor will pull out of his hat.

Tuesday, July 31: I should have written all this down at 1 o' clock in the morning since that is when everything was clearest in my head. I crashed into bed at 8pm with a splitting headache, only to lie awake in the wee hours mulling over Monday's events.
Yesterday was Hanoch's regular 6 monthly neuroopthalmology appointment. He was taken an hour and a half after the scheduled time and after the first consultation, there was another half hour wait for the drops to take. It was another long session at the hospital. Everything is stable and the doctor was pleased with the MRI. She only looks at "her" part, and she didn't bother to explain anything to us even though both Hanoch and I were watching her computer screen. Makes me wonder if she knows what she's looking at...
From the eye department, we zoomed straight over to radiology to try and see if we could procure that elusive written report for the MRI. The receptionist saw that the report was ready on the computer, but had not yet been ratified by the doctor. She buzzed him to find out if he was there and told us to return later on and see if it was ready. We went off to have lunch and by the time we got back, unbelievably, it was waiting for us. It's a good report. There is further improvement in the brain stem. Some changes are noted in the cerebellum next to the surgery site, but they are reported as stable. There is thickening around the area of the hypothalamus as seen in the previous scans. It's wonderful to see the word improvement in writing. However, this is where I become a killjoy. I AM SCARED. Leslie always tells me that I don't know how to take good news. The truth is, maybe I don't know how to take good news or bad news. G-d forbid that we should receive bad news. I do want good news and I thank G-d for good news. But when the doctor has talked about possibly stopping treatment, ironically, that is a damper on the good news. It sounds so ridiculous because it really would be great to stop treatment. No more of these exhausting monthly visits, no more "foreign bodies" being pumped into Hanoch, no more having to excuse myself from work. Yet, there is a niggling doubt. Just as there is that niggling doubt whether to treat is the right thing to do, it is the same for not to treat. The ideal would be to take a slice of brain and examine it under the microscope,and then we would be wiser as to what we are looking at now versus what we were looking at in 2002. Since, of course, that is out of the question, we have to second guess. This is where I don't really understand the CNS disease. There were two processes going on inside Hanoch's little head 5 years ago, one a granulomatous process and one, an inflammatory, neurodegenerative process. We thought treatment was to treat both processes and that the inflammatory one is an ongoing one which called for continuous treatment. That is what we were led to believe. We know that Hanoch's symptoms were there long before MRI detected anything wrong. This makes me very nervous about stopping the treatment. Now it could be that the next time we see the doctor, this suggestion to stop treatment will not be brought up again, but I don't think that will be the case and I am trying to steel myself that he's going to say we'll not even do next month's treatment and have some arguments ready as to why I don't think that's a good idea. The potential of ND disease is too devastating to even contemplate. Perhaps we could lengthen the time between treatments. I know that whatever suggestion I bring will be no-noed, but I have to try.
Now I could delete almost everything I have just written because it's all speculation. That's what I was doing in the wee hours - chewing the cud, speculating, practising my conversation with the doctor, worrying.... I'll never learn. This morning Leslie reminded me how, despite all the miracles that G-d made for the Children of Israel in the desert, they still doubted and didn't have faith in Him and were punished for it. I'd better learn fast.

Monday, July 23: I slept like a log last night, so exhaustion overtook nerves. Hanoch has a brilliant back and blue arm from yesterday's treatment and he offered the same arm for today's. It was nurse Ya. who is pleasant, but not so good at working the not-so-new infusion pump. Unlike nurse Y. who very cleverly links the two bottles of IVIG and the saline into one line, nurse Ya. only knows how to do one line at a time. The result is that the last few ccs of IVIG are left in the tube to avoid pumping in air and there is no saline flush afterwards. So treatment time is 20 minutes to half an hour shorter. That suited me well enough because even though we had left the house bright-eyed and bushy-tailed, we arrived ragged (well, I did anyway - Hanoch was driving) after fighting traffic jams and then taking half an hour to find a parking space at the hospital. Treatment is over for another month. We'll see which way the wind blows in the days to come.

Sunday, July 22: Fear and extreme anxiety are now gripping in double quantities after this month's meeting with Hanoch's doctor though I should have learned by now not to get worked up over a conversation when nothing concrete is on the table.
We arrived at the hospital early and were very lucky to beat the teenager and his father who regularly take up the first hour of the doctor's time. Being the first to be taken, the doctor had time and looked refreshed. There was still no answer from the MRI. The doctor thinks this is a good sign as if it were something urgent, he would be informed quickly. If it is routine, it waits for a particular radiologist who usually reviews Hanoch's MRIs. The trouble about having time to schmooze with the doctor is that I tend to open my mouth and afterwards regret it. He was doing a more thorough examination with Hanoch than he has done in a long time and he was pleased that all is as it should be. I mentioned that Hanoch has been on treatment for a long time. I've said this before with no reaction from the doctor. Today the doctor thought about it and said that if this MRI continues to show improvement, then maybe we will stop the treatment. This came as a shock - on the one hand, an alluring proposition and, on the other, making me suddenly panic-stricken. For a very long time I have tried to mentally prepare that treatment is infinite. That is difficult. It involves the monthly bind of attending hospital and missing work days, the exhaustion and tension of the whole hospital experience, the running around to sort out the bureaucracy, and the niggling anxiety of possible unknown long-term effects of treatment. It is even more difficult to consider stopping the treatment. True, that regular bind of attending hospital and the accompanying physical and emotional drain would drop off, but at the same time, we would lose the safey-net that treatment affords us. Before treatment began, apart from the swallowing difficulty, speech and cognitive deficits, Hanoch felt his leg falling asleep numerous times a day. His eye bothered him too. The leg and eye have resolved and although the other issues are still there, they are a lot more muted than they were. He has made great strides. We are afraid that if treatment stops, his symptoms will reapppear. The inflammatory process in the brain which causes the neurodegeneration will be allowed free reign presuming that this process is an ongoing one. I'm not sure if the histio reseachers understand the disease process in the brain fully, if there is a gradual decline, or if there are periods of stability followed by steps down, and if long term stability can be maintained with or without treatment. Hanoch is one of the frontrunners currently being watched for ND CNS LCH. There is very little for us to use as a model. His doctor is going to consult one of the experts in autoimmune disease and treatment in Israel. But however much we respect his opinion, we pointed out that he will not have knowledge of LCH and this particular phenomenon of LCH. It worries us that our doctor will base his decision (his decision invariably becomes ours) on a doctor that doesn't have a full understanding of LCH. We will not do anything without consulting the respected Austrian LCH team. However, from previous experience of discussions, since there is no concrete data to go on, Austria tends to nod approval for what we do, using the data they gain from our experience to try to build a picture out of the puzzle pieces. The status quo despite being annoying is also comforting and I am nervous to change it.
With a lot of waiting around and pestering, Leslie managed to procure our own copy of the disk from the MRI department and with our untrained eyes, we are happy that the lesions that we know of look better. They are much more faded on contrast. There are over five hundred sections as opposed to the usual two hundred and something and there are some sections that have been done in great detail. We don't understand what they show which is frustrating.
Treatment went smoothly. Nurse Y. attended to Hanoch promptly and looked after him well. He slept for about an hour and ate all the quiche Leslie brought from the fast food cafe for lunch.
My brain is muddled and I can't think any more. I'm shattered. That doesn't mean I will sleep well tonight.

Friday, July 20: I never fail to get upset over bureaucracy, yet this time I have only myself to blame. I should have picked up the phone a week ago to find out what happened to our 29G form which we need back from the hospital signed and stamped by all the various committees in order to apply to the insurance. Thinking that the secretary would call me when the form arrived in on her e-mail and there is enough time to play with, I left it till yesterday to phone after not hearing anything for almost a month. It was in the file and I should call reception which I did. The receptionist faxed me the page. I looked at the form several times trying to work out what was strange about it. Then it dawned. It was the same form that the doctor and Hanoch had signed, but there were no other signatures or stamps. It had never been sent round the various committees after Hanoch had signed it last treatment day, a month ago. I quickly called the secretary again. Apparently, they thought it was too early to send it last month, so they decided to wait, only she must have filed it and forgotten it. So now we will be in a rush for the approval as it usually takes 3 weeks to go round the various committees and we still have to submit it to the insurance and get their approval. By that time it will be August and it could possibly be held up by the vacation period, just what I wanted to avoid. I never learn my own lessons not to rely on other people. Always check and double check yourself. It's not called the HELLSINKING committee for nothing.

Monday, July 16: Hanoch's MRI was scheduled for the end of July, so he was put on stand-by for an earlier appointment. The magic phone call came at 2 o'clock in the afternoon. "We have a cancellation at 6 o'clock. Do you want the slot?" They called Hanoch's cellphone and, surprisingly, he answered yes without hesitation. The good thing about such short notice is that it left only a few hours to feel nervous. Luckily, he had already finished most of his lunch because his appetite suddenly disappeared. Luckily too, though not for the people in the neighboring apartment block, there was a fire in one of the apartments. This meant a huge commotion of fire brigades, ambulances and police cars which kept Hanoch busy as a spectator. By the time he got home, it was almost time to take his valium and leave for the hospital. He was sleepy all the way and relaxed going in. Valium is the wonder-drug for getting Hanoch through the MRI, no doubt about it. We had a fairly long wait, two hours from beginning to end because there was a mix-up with the scheduling of the rooms and Hanoch always does it on one particular machine and had to wait until it became available. Leslie, who accompanied him inside, said he was excellent and kept very still and the scan itself took no more than about 20 minutes from when he was actually taken in. The part that produces the CDs was broken, so we came away without the disk. This was disappointing since the first thing we always do when we get home is to do our own reading of the MRI. We should be able to pick up a copy on treatment day next week. Now for the results...

Monday, June 25: Three years ago, in June, Hanoch started IVIG therapy. It's a bittersweet anniversary because on the one hand, it is a bind on our lives, stressful and tiresome, yet on the other, the treatment is helping him. That overrides any discomforts for us. Yesterday, as Hanoch was wandering around with his pole, a father, a new face to us, actually asked Hanoch if he was new. That might have been funny if I had been in a humorous mood. Yesterday, at least at the beginning, was a day to try a saint, and I was certainly in no mood for laughing.
It started with us being 5th in line for the doctor despite the fact that we had arrived in at our usual time. The others seem to have been early birds because normally we are one of the first. Add to that that the first patient on the list, a teenager with his father, ALWAYS sits in a long time. We arrived outside the door at 9.15. They were already inside and did not emerge until 10 o'clock. As a result, we did not see the inside of the doctor's room until 11am. Then, no sooner had we sat down, the doctor was called away to do a procedure. So we continued to sit in his office admiring his notice-board for another 10 minutes. Smoke was nearly coming out my head, but Leslie kept reminding me that no amount of my stressing would do any good, to remember that we are their prisoners for as long as they want to keep us, to calm down and shut up. So I did.
When the doctor returned, we got down to business: a referral for the next MRI, a referral for speech therapy (which I don't know that we'll do anything with), a new prescription, preparation of the new 29G form for the 6 monthly renewal of the IVIG approval, treatment instructions and a sounding of Hanoch's chest for his still bothersome cough. Maybe the IVIG will clear it up now. Leslie had just retrieved some new articles from the medical library at Tel Aviv University a few days earlier, two of which were about CNS LCH. One of them even quoted an abstract written and presented by Hanoch's doctor at a Histiocyte Society meeting. I gave the doctor copies of the two articles. At that moment one of the co-authors of the abstract came into the room, so the doctor showed him the article. "Hanoch's mother keeps me well informed," our prof. said smiling. Other doc turned to Hanoch: "And how are you?" Not waiting for an answer: "You look alright anyway." !!!!!!!!!!!!!!!!!
Treatment finally got underway at the record hour of 12 noon, so needless to say (but I will say it anyway because I have to purge it from my system), it was a very long and tiring day. Hanoch slept through some of it, which was good for him. While I crashed into bed at 9pm, he was out with his friends until 11.30.
Today was altogether less stressful if we don't take into account the initial insertion of the venflon. Hanoch was in doubt from the beginning that it was in place, but Nurse Y. thought it was. She flushed the vein with water and it appeared okay. Then she injected the hydrocortisone. It wouldn't shift out the syringe, so she pressed harder. It toppled over and the hydro spritzed all over, giving us a shower. So out came the venflon. Nurse B. came to try her luck with a fresh tray. She was more successful and treatment started at 10 o' clock, a much more civilized hour to begin. At first, Hanoch felt a bit funny, but luckily that passed off quickly. He fixed his earphones, got his discman working and off to sleep he went. Towards the end, a group of soldiers came round handing out gifts to all the children. Everyone got a trivia game that is suitable for the very young to the very old to play. Thank you to the donors. The soldiers looked a bit lost, not knowing where to put themselves, gawky young men. Pediatric oncology, if you've never been there before and drunk in the sights, takes some getting used to. That's us for another month. Well, MRI somewhere in between (hopefully).

Thursday, June 14: Hanoch has been cough-cough-coughing for the past few days. I had to buy myself a new mobile phone as mine conked out on me. Hanoch, being a gadget man and understanding all these things where I am a complete ignoramus, came with me. He asked, or I should say TRIED to ask, the salesgirl a question, but he kept coughing. Eventually he got the question out. Then a few seconds later he started coughing again. "Bless you," said the salesgirl. "I didn't sneeze, I was coughing..." The salesgirl smiled: "I know, but with a cough like that, we also say "bless you".

Tuesday, June 5: If you don't want to get invited back to the hospital too fast, KEEP YOUR MOUTH SHUT. This is what Hanoch learned today at the neurology appointment.
We waited over one and a half hours to get in to the doctor's office with only two people in front of us while we were only inside 10 minutes. Not that I'm complaining about that. The doctor, obviously way behind in his schedule, looked twice at his watch as the the secretary popped in to place more files on his desk. After thumbing through Hanoch's file, the neurologist explained to a doctor who was sitting in beside him that Hanoch has Langerhans cell histiocytosis. He had a little trouble getting his tongue round the histiocytosis, but he managed. Then he turned to me enquiring as to how Hanoch had it in the brain when it was a disease of the BONE. I put my doctor's hat on, delivered a short, but informative summary of where Langerhans cell histiocytosis can strike and passed over the disk with the MRI. The two doctors admired the improvement of the lesions. They knew they had improved because I also kindly handed them the written report. The neurologist wondered if one of the slides they were looking at was on T1, Flair. Dr Rose Smith again obliged by pointing out that at the top of the slides the doctor can avail himself of any information he likes. He read out Hanoch's name. That is also at the top of the slides. Ah, yes, axial - Flair - he turned to me and smiled most sweetly. Since the MRI showed improvement he wondered why Hanoch's speech had not improved. He thinks the two should go together. Being strapped for time, he didn't bother to put Hanoch through his neurological paces and was about to wrap up the appointment telling us to come back in 6 months when he asked when we next see the hematologist. Hanoch volunteered the extra information that he would be having a new MRI in one month's time. At this, the neurologist got his own back on Dr Rose Smith and said that if that was the case, then we had better come back and see him in another 3 months to check on the correlation of the MRI and the speech. And we should tell the hematologist to write Hanoch a referral to a speech therapist.
Lucky there were a lot of people waiting outside because I felt like throttling Hanoch when we got out the room.

Monday, May 28: Today's treatment went extremely well. Nurse B. is very good at getting the venflon in on first poke. It's rather odd. Yesterday, she was attending to a boy who was sitting, sardine-like, right next to me, and when she saw me, she was all smiles and how are you, sort of out-of-character as she's not a smiley person. Today, she seemed to be in a very dour mood, like the way she usually is, only more so. Maybe she wasn't feeling good herself. Best give her the benefit of the doubt. It's hard to second guess as the two nurses who were on duty were kept busy but not run off their feet. Hanoch never had his statistics measured yesterday or today which is very lax of them. The laboratory assistant who draws the blood from the kiddies' fingers came round to help out and measured two children sitting beside us. But she totally ignored Hanoch. I was in my can't-be-bothered-fighting mood, so just let it pass. In short, today's treatment went extremely well. Hanoch had a good sleep during it, drove home afterwards in a less maniacal manner than yesterday and is away out again now. Keep going Hanoch, that's the way we like it!

Sunday, May 27: After 5 hours of sitting around the hospital, the euphoria of being let loose on the road was too much for Hanoch to curb. He was in the driver's seat and his adrenalin was high.The first thing I had to do on getting home from treatment day was to walk straight out the door and round the block to air out. Thank G-d we got home safely.
We left the house earlier than usual to try to get in to the doctor's before the queue built up, but as always, it doesn't work out quite the way you would like. The procedure is that you sign in at reception and the receptionist passes the files to a gofer who takes them to the doctors' offices. Since Hanoch is not on chemo, he does not need a blood test before he gets in to see the doctor. The gofer usually takes in the file and writes Hanoch's name up on his door fairly quickly. Not so today. It was a young girl that was doing the job as opposed to our favorite V. and instead of delivering in our file right away, she waited until a group of children's blood test results had come and then brought all the files together with Hanoch's name way down on the list. Well, of course, we came in after these people because it takes over an hour to get the blood test results up from the lab. They came in before us and they are before us on the list. It's never been done that way, but there's not much we could do about it other than sizzle on the inside. We hadn't been waiting long and Hanoch's favorite nurse Sh. chanced down the corridor to a different doctor's office. She inquired if Hanoch was in for treatment, so I said yes, but it will be a long wait as we are at the bottom of a long list to get in to the doctor. She was about to continue walking on back to the day unit when she turned back as if she had forgotten something and went in to Hanoch's doctor. A few minutes later, she was the bearer of good news - he would write Hanoch's treatment instructions for him. He called in a family who had been waiting outside the door when we arrived, and then after them, he called in Hanoch. Thank you, thank you thank you, Sh. a million times. I wish everyone there related in such a nice, and thoughtful way as you do and would be as competent too.
The doc told us that he didn't learn anything much new about LCH at the oncology conference in Toronto. They are making progess in understanding the disease (he didn't elaborate), but he said it takes a long time to get from the lab to the bedside. He learned a lot about even rarer diseases than LCH, a talk given by Dr Sheila Weitzmann, Histiocyte research physician. We discussed Hanoch's teeth again. Since the last time, Hanoch has had even more dental work needing done. His teeth are soft and brittle and although he has to work harder at cleaning, this is not a dental hygiene problem. He wrote us a letter for our health insurance so that perhaps they may help us cover some of the costs of the treatment. It's a long shot, but it's worth a try.
Once we eventually got in to the day care unit, Hanoch was hooked up efficiently by nurse Sh. She brought the new infusion pump which she is now an expert in using, even being able to connect up multiple bottles and tubes, something none of the nurses were able to do with it up till now. It timed well and Hanoch was finished after about 3 and a half hours. It was a busy day with many very sick looking children. Sometimes, despite all the children being sick (or else they wouldn't be there), they look like they are doing fairly okay with their treatments. Today, quite a few of the kids looked a real mess, one or two pale walking skeletons, one or two chubby, ruddy steroid faces, very distorted from the meds, one teenager who was being led slowly by his mother. These are the images that are so hard to get out of your head even when you arrive home. They come back to haunt you in the middle of the night when you can't sleep. I keep repeating - thank G-d for what we have, thank G-d for what we have. Please G-d, help heal these families. Help heal all the sick children. Help heal Hanoch. Give us all strength.

Monday, April 30: Nurse Y. came to attend to Hanoch again today. She sat down in front of him as she usually does and they discussed where on his arm she should prick the vein. In the middle of their deliberations a woman came along, sat down beside the nurse and started talking to her about some PICC line and how with it being new, they should explain that blood is drawn from it etc. I had never seen this woman before and it annoyed me that she was butting in while the nurse was attending to Hanoch. If I want to talk to a nurse, I try to wait till I see she has a free moment, not disturb her when she is with another patient. Nurse Y. had, of course, turned her attention from Hanoch and was half with this woman and half with him. I was just wondering if I should give the stranger a lesson on basic manners when the woman suddenly asked the nurse: "Do you want me to do the Venflon?" The nurse smiled broadly and was eager for her to do so. The woman donned the gloves in the tray. I leapt up from my lolling position on the armchair and in panic stricken voice to the nurse: "Are you going to let this MOTHER do the Venflon. You can't just let anyone do that, not on Hanoch anyway!!!" The nurse: "No, no, this is a DOCTOR!!!!!!" We all burst out laughing together, the nurse, doctor, Hanoch and I. As I am thinking about it and writing it down, I am still laughing. It was so incredibly stupid and funny.
1. All the doctors wear their ordinary clothes, no white coats or uniform of any kind, so they are indistinguishable from the general public unless you know who they are. 2. I thought I knew all the doctors there. The nurse said this doctor is not new, yet we have never seen her before, nor have we heard her name before. 3. The situation could have been avoided if the doctor had acted more professionally and introduced herself to us and asked Hanoch's permission after she had asked the nurse.
The DOCTOR got the Venflon in right away, Hanoch was hooked up efficiently and the three and a bit hours passed uneventfully. Hanoch looked pale and tired like he tends to do while the infusion is administered, but he perked up after it and has been out and about since we got home.

Sunday, April 29: We surpassed our world record of good treatment days. This is so highly unusual that I daren't get too cocky over it.
Traffic was heavy and Hanoch was driving, so there were a few nailbiting moments en route. We got in safely, thank G-d, and arrived at the doctor's with two people in front of us. Another family was already inside his office. Popping out for something, he saw us sitting there and suggested we pick up the treatment orders and get started with treatment and then come back to see him later on. This suited us fine as the sooner Hanoch starts treatment, the sooner we are out the place. We got the orders and a new prescription and went straight in to the day clinic. He was assigned Nurse Y. who is very pleasant. She came to attend to him quickly. Nurse Y. seems to always work without gloves. Hanoch asked her to put gloves on. She astounded us with her "with pleasure" and smiley face and came back with gloves. The first poke was unsuccessful. It looked a good vein, but one look at the needle coming towards it and it said "oh oh, I'm getting out of here". The vein escaped and Nurse Y., remaining calm and smiley, had to find another. (Hanoch wasn't so smiley). The second poke was fruitful and treatment got underway. It went without hiccups and Hanoch didn't even sleep through part of it as he usually does. He went out looking for the doctor dragging his pole with him, but the doctor was out of his room, so he decided not to wait. Hanoch had some blood tests done last week at our local clinic and all is well. There isn't really anything else to report to the doctor, we are very thankful to say. Four hours after we arrived, we scarpered as fast as our little legs would carry us to the car park where Hanoch again took the driving seat and got us home safely. GULP. Thank G-d.

Thursday, April 19: Another bureaucratic annoyance. I tried to pick up the IVIG which I had ordered on Sunday from the pharmacy, but they wouldn't release it. New rules. Last month they released it on March 26, so this month the computer won't allow them to release it till April 24. Well, that's alright treatment-wise (this month anyway), but it would have suited me better to collect it today since next week is a short week with Remembrance Day when everything closes early and Independence Day when everyone is on holiday. It never matters what suits the patients and their families, or what makes their lives a fraction less stressful or easier. What do they think we're going to do with the stuff? -Drink it? - Play doctors and nurses with it? Ah, SELL IT!!!!!

Thursday, April 5: Anyone with a match could have lit an incendiary. My fuse can still blow any minute.
The day started well enough. The schools, and half the country, are on holiday, so the roads were open. Instead of the usual 50 minute crawl through the traffic jams, we made it in 25 and were at the hospital bright and early. No nurse was in sight. There is a nurses' meeting which is generally between 8.30 and 9.30, so I assumed they were going to be on the floor pretty quickly. The minutes ticked by, ticked by and ticked by. It was only at 10.15 that the first nurses emerged. Then, gradually, they all congregated at the nurses' station where they were still nattering to each other. We had been there for a whole hour with nothing doing and I was getting more and more agitated. The head nurse, the only male nurse there, who has an honors degree in sitting on your backside, was at his post. He assured me nurse A. was coming to hook Hanoch up in no time. But nurse A. who tries to avoid us whenever possible, not sure why, was engaged in vehement conversation with her colleagues. Male head nurse does not butt in to the ladies because he would probably get his head bitten off. So we continued to wait. I even called over to the nurse who hooked Hanoch up yesterday, but nurse A. was assigned to Hanoch today, so she wasn't going to oblige. Hanoch's favorite nurse was being summoned by all the parents, but thrust everyone firmly away because she was on anesthetics duty. By the time nurse A. arrived, I was almost in tears, I felt so angry. Finally, Hanoch got his juice around 10.45, one and a half hours after we had arrived. I knew I had to get myself together fast because there was still another 3 hours of infusion to go and the only one to suffer from the anger would be myself. Thank you Leah if you read this. I thought of your stoic patience through months of waiting, and thought if you can do all that, then surely I can surmount this minor frustration.
Once treatment got underway, it went very smoothly. Hanoch had the old Rolls-Royce infusion pump whereas his neighbor had one of the new machines that constantly gave trouble. I decided to close my eyes for a few minutes to try and relax (try is the operative word). When you have your eyes open (as you usually do!), you don't notice half of the sounds and noises that are going on around you. Maybe you blank them out to keep your sanity. There were two childrens' programs blaring on two separate televisions, the neighbor's infusion pump beeping, a computer game blipping, soft voices talking, nurses calling to each other in loud voices, a child's raucous crying. The lights were glaring on my closed eyes, so my few minutes of relaxation didn't last long. It's more relaxing to stay awake and be tense. My fuse can still blow at any minute.

Wednesday, April 4: Treatment started unusually on a Wednesday. The only two days available to us this week are Wednesday and Thursday because of the Passover holiday. Wednesday is not a treatment day at day clinic. The patients there are children getting antibiotics or those who have treatment several days in a row. Theoretically, it should have been a quiet day, but because of the holiday, it was quite busy with only one good nurse who seemed to be always on the go and one other who manages to look busy without doing too much.
We arrived in the nick of time. Just as we entered the double doors, we met Hanoch's doctor exiting them. He was on duty and was about to disappear somewhere, so he kindly about-turned and wrote us the treatment instructions, stork-like, at the reception desk. I had remembered to take the IG out the fridge a couple of hours before we left, so it was ready for use. Hanoch was hooked up efficiently five minutes after we sat down. World record? Three hours of treatment passed uneventfully with only a few blips of the infusion pump. On one occasion, Hanoch tried to fix it himself and ended up pumping the secondary instead, so I had to hunt the nurse to set it straight. The monotony was broken by two dental students who came questioning the inmates on their dental hygiene and then handing out free toothbrushes. Since Hanoch volunteered that he had just started a new toothbrush, he lost out on the freebie.
Just as we were leaving, Hanoch remembered that we had not got a new presciption for next time. The doctor will be there tomorrow, but Thursday is a busy treatment day and he will have his full patient load. We decided to get it before we left. He was out his room, but we could hear him at the end of the corridor, so we waited for him. It added on another 20 minutes which spoiled our early finish. He was preoccupied with another case, so it was a short meeting with him. He made a face when he heard Hanoch got antibiotics for his bronchitis, but he doesn't know Hanoch when he is sick and coughing. Not for the first time, he commented on Hanoch's teeth. (The dental students had obviously made their way round to his section too). Hanoch's teeth are a disaster, and he could do a lot better looking after them, but I always defend him in front of others. He is at the dental hygienist every two months and has an average of about 10 fillings every two months. He has always had terrible teeth, ever since the first LCH in the jaw where all his top and bottom teeth on the right side were either destroyed or in very bad shape. We provide our dentist with the means to go some very nice holidays. Fortunately, there wasn't anything else to relate (if we're talking teeth, it's a sign there's nothing else to talk about) and in hem/onc, that's the way you want to keep it. I am beginning to feel that we are part of the wall decorations. Is that good or bad?

Monday, March 26: As can be expected of the first day of the school holidays yesterday, it was spent at the doctor's office and at the clinic. Hanoch's incessant coughing for 4 days and nights has caused us all sleepless nights. I wake up with the slightest noise which means that I am currently in zombie zone from lack of sleep and exhaustion. His cough has got progressively worse and he sounds like an old dog. He was so weak that, one night, it was more like a moan than a cough. The doctor declared bronchitis and sent him for an x-ray. When Hanoch takes something, it is never by halves. He is now on antibiotics and there is already a tiny improvement even after two doses. TG. Ever since he was a little boy, whenever he has been sick and stuck at home, he has had a puzzle to accompany his recuperation. I was a little surprised when he requested one this time, but, anything for my spoilt baby, and we went out this morning and bought a giant 3D puzzle. He has since been absorbed in putting all the little pieces together.

Thursday, March 22: After being better for a few days, Hanoch is down with another fever which is coming out with his very own brand of non-stop coughing and a cold.

Sunday, March 11: Hanoch has had a fever for the last couple of days. He's already a little better today, the fever on its way downwards. Here's hoping it continues that way.

Tuesday, March 6: Hanoch started a new job this morning, five hours a day at a local high school as a medic. The school is 10 minutes walk up the road which is very handy, and he had 2 pupils, both with headaches, in all the five hours. He passed the time with cups of tea and snacks, listening to the radio and studying for the advanced medic course he is taking twice a week in the evenings. He said that all that sitting around was very tiring.

Monday, March 5: It was a quiet and uneventful treatment day. We like nurse B. She is quite good though had a bit of difficulty when the needle went through the vein and burst it. She managed to salvage it by playing around, so she didn't have to do a second poke. Hanoch's arm is a nice black and blue. There were still a few residue merrymakers since today was also a school holiday. More goodies were handed out and Hanoch has added another four packages of candies to the ones he got yesterday. Our house now looks like a candy store.
We were sitting beside another family who has also been in treatment for a good long time. In that time, the mother of the girl got pregnant and gave birth to a little baby girl. When I found out that that little baby is now 7 months old, I nearly fell off my seat. I could have sworn she was born only a couple of months ago. This made me think about what the doctor said yesterday while he was writing the letters. In one, he had to write when Hanoch relapsed and he thought it was 2 years ago. No, it was almost 5 years ago, and the current treatment has been going on for almost 3 years, to which he replied "good". That's not exactly how I would have expressed it, but he clearly didn't want to get into a discussion on it. Later in the evening at home, when I read what he had written for how long the treatment should continue, he wrote, as long as there was a favorable response to it. One of the soldiers had asked Hanoch how long he was to receive treatment. Hanoch's plain, matter-of-fact reply was "for all my life" which made do a double-take. Lately, I have been feeling very burnt-out with the hospital game, but I have to be thankful for what we have, batten down the hatches and get on with the long haul. Hanoch's accepting nature and indomitable spirit is in front of me. A long haul is good.

Sunday, March 4: Happy Purim! My head is spinning from the tumult of the hospital. This month's course of treatment kicked off without seeing Hanoch's doctor. We knew in advance he would be attending on ward duty and on the advice of the receptionist had asked him to prepare the treatment orders. So all we did was touch base at reception, receive the instructions and go straight into the clinic. It was fairly quiet and the nurse came quite quickly. Sh., our favorite nurse, said she would come, but she was beaten to the post by a different nurse who is pleasant enough, but not so good at getting the IV in. After one failed attempt, she called for reinforcements. This particular nurse is not that high on my list of desirables. She never wears gloves and I wasn't too happy how she handled the needle (the same one as on the first attempt). However, whimp that I am, I sat docilely and didn't say a word.
From quiet and calm, the clinic quickly became chocker-blocker with merry-makers there to spread cheer. First, there was a group of soldiers from the education division. Hanoch and the soldier in charge of the group embraced warmly. How's that? Turns out, they were in the same class in high school. After that group left, another group of soldiers came, this time a large contingent from one of the air force bases. They broke up into small groups and joined each of the children. One group came over to Hanoch with a many-piece puzzle. The soldiers obviously took Hanoch for a lot younger than his years, but once they got talking and discovered they were all around the same age, the challenge was on, and they completed the puzzle within 45 minutes. They stayed and talked, then they disappeared out to the coffee area where they embarked on their next activity, making chocolate balls. One look at how they were doing it was enough to declare it unfit for human consumption, but the soldiers and the children all had great fun and lots of laughs. In between, many other generous groups of people came handing out fancy bags of candies, singing and entertaining. Hanoch came home with about 8 different bags and boxes of candies. It was a non-stop day and the 4 hours that we were there seemed to fly by. Not that there were not the usual elements of tension. I also had to get hold of Hanoch's doctor because we needed a couple of letters from him. Eventually, after a lot of running up and downstairs, I cornered him via that clever instrument called the cellphone and he came down, opened his office and wrote us the letters. Thank you, Prof, for making that special effort for Hanoch. Thank you, all our great soldiers, for making it a special day for the children and the parents.

Sunday, February 25: Two pieces of good news. First, our health insurance called to say that the IVIG approval is extended for another six months. Leslie dutifully went to the pharmacy and collected the bottles for next week's treatment. In addition, Hanoch's doctor forwarded us the letter from Vienna reviewing Hanoch's MRI. Like the radiologist here, they see some slight but definite improvement. We're happy with that. Thank G-d for everything we have.

Thursday, February 22: Thank you, Chairman of the Teachers' Union for calling us out on strike today. How did you know that I needed this little rest so much? I even managed to sort out the bureaucracy of the 29G form at leisure. The form, together with a letter from the oncologist, and a letter from the family doctor has to be taken to our local health insurance office to be passed forward to their medications committee. All this involves various stages of running around and aggravating phone calls to get the necessary documents together. It will now take about a week to get the approval extended. Hopefully, word will get back before collecting our next batch of immune globulin from the pharmacy which we need before the end of next week. Even rest is relative when it comes to LCH.

Sunday, February 18: You know you've had too much of hematology and oncology when a student spells out the letters "all" during a reading comprehension lesson, asks you how the word is pronounced (a 10th grade student!!!!!) and the first thing that comes into your head is Acute Lymphoblastic Leukemia (ALL). HELP!!!

Tuesday, February 6: The MRI has once again been sent off to Vienna, this time in its own jewel case and a padded envelope. Let's hope it gets there in one piece and we finally get an answer. Grrr....!!!
I have been fighting tears all morning. The day after two long hospital days, I always feel like I have been hit over the head by a sledgehammer. Hanoch went to bed early last night which is unusual for him. He was feeling very tired and not so good, but slept well and is fine today. I went to bed early and slept badly. All the sights and sounds of the days flooded back in the wee hours and it was impossible to clear my head. While Hanoch was in the middle of the treatment yesterday, I went downstairs to the cafeteria, as I often do, to buy some snacks. Returning upstairs, crossing back through the double electronic doors with pediatric hematology oncology painted over them, I remember consciously thinking how on earth we landed up in there - and having got there, how come we can't get out? Next treatment falls on the holiday of Purim and the one after that will fall in the Pesach (Passover) holiday. Holidays are good times for treatment because I don't miss school and Leslie doesn't miss work, but it means that we never get our holidays for family time relaxation or just for going out to enjoy the holiday. If we go on Purim, we leave Ronit at home. She's a young lady, not a little girl, but it doesn't matter. Every holiday we have, gets shot up with some medical appointment. This means that we never get a chance to recharge our very worn batteries. When the doctor suggested restarting treatment in March of 2004, I never guessed that we would still be at it as of February 2007. I know in my heart that we have so much to be thankful for and I do say my thanks every single moment of the day. But today I've just let the pity party swing.

Monday, February 5: Nothing is ever quite the way you think. Hanoch started treatment early. We left the hospital late. We received word from Vienna. It was not the word we were waiting for...
This time I remembered to take the IG bottles out of the fridge an hour before we left the house so that there could be no complaining it was too cold to pump into Hanoch's veins. One of the nice nurses was on duty and she came to do the honors right away. Only she didn't have luck with the veins and after two failed attempts, had to call the other nurse over to have a try. Neither of the nurses wore gloves, and I didn't have the courage to ask if they had washed their hands. Best not to get anyone's back up. Third time lucky and Hanoch was hooked up. It was a quiet and peaceful morning. We had the corner all to ourselves.
When we leave, we always make our appointment for the next treatment. Hanoch's doctor will be on ward duty then, so he won't be seeing his patients in the clinic. The receptionist told us to go and ask him to prepare treatment orders for next month so that we won't be delayed. He usually leaves early to work in another hospital on a Monday, but today he was on clinic duty and happened to be there. However, he wasn't in his office. Leaving the clinic for the corridor outside, here he was, talking to someone. He signalled to us to wait. Vienna got the CD, but it was damaged. Therefore, we have to send another one. Instead of making our way home, we toddled off to the archives where we put in a request to copy January's MRI. The man who works there remembers Hanoch from all the times we have asked for copies and is always very nice. He put the last two scans on the disk. However, waiting in the queue to be attended to took half an hour and waiting for the disk to be ready took another half hour. That was our early day out the window. Now we will try and package it even more carefully than before, wrap it in cotton wool, for its important journey overseas. Our baited breath is just going to have to stay baited somewhat longer...
Hanoch is feeling tired. Me too.

Sunday, February 4: After a day of constant hubbub, it is hard to focus to my thoughts on what was. Doctor's visit was smiles, considering the favorable MRI news and the neuroopthalmology report. I asked the doc why the MRI report didn't mention the cerebellum and he said the changes there are post-operative, whatever that means. The important part to focus on is the brainstem as it involves vital functions, and he is pleased with the improvement there. He is going to write to Vienna to find out if they received all the data and the CD. I get the impression he wants their stamp on the results too. Vienna - we are waiting for you with baited breath...
The doc also told us that the neurologist that had seen Hanoch before he retired was asking for him and about what had happened with the neurology forms for Vienna. Apparently, he is still somewhere around advising neuro-oncology. We were much happier with our consultation with the new neurologist who is young, more approachable and made an attempt to get the file in order which the "expert" had left in disarray. Maybe the doc who retired is more experienced, but he is also arrogant and aloof, so I told the onc we were sticking with the new one.
The main thing that stands out is the feeling of being cramped in like sardines in the day center. That's how busy it was. And having to restrain Leslie from wanting to shoot the nurse who was attending to Hanoch for calling Leslie "Grandpa". Well, he doesn't look THAT old... Hanoch wasn't too happy with her for his own reasons. She was rough putting the venflon in and it was more painful than usual. What. He gets paracetamol too (can't read orders). What. He can't swallow pills at his age (can't read the word "syrup"). Never mind. We're used to the insults. I wonder if Hanoch gets as peeved as I do. She had a new old nurse in tow, showing her the ropes, a nurse who had reportedly worked there years ago and was now back again. We'll see in due course which category of ours she will belong to.

Sunday, January 28: Yoo hoooo!!! Great News! Results of the MRI are in: one of the lesions has almost gone and another is stable, no change. No new ones are seen. Hanoch didn't want me to update till we get Austria's opinion, but I couldn't resist. Surely they can't be that far off the local opinion although their report is usually much more detailed.

Thursday, January 25: I called Hanoch's doctor since we need him to prepare the 29G form for re-applying for approval to continue using the IVIG, our six-monthly ritual. He is just back from a trip abroad and didn't know Hanoch had done an MRI even though I e-mailed him to tell him on the very day. Well, I guess he was inundated with mail and he may not have read backwards so many days. So we'll not get any answer from him until next Wednesday, x-ray meeting day. I have to remind him about it next week otherwise we'll miss next week's too. Nor have we received the official written report. If no-one has heard anything, then it must be okay. No news is good news.

Monday, January 22: Neuroopthalmology appointment. Routine visit, uneventful. Everything is stable.

Sunday, January 14: MRI day dawns again. Valium did the trick and Hanoch lay perfectly still. We got 218 excellently clear pictures. We can spot the lesions that we know are already there. They're still there... but hopefully, there is nothing new. We think it looks okay and we hope we are right. Now the countdown till the results. I have resolved NOT to call the doctor. If he doesn't call, there is nothing to worry about. Will I be able to hold out?

Monday, January 8: Warning: this is another Leslie update. Leslie took Hanoch to the hospital while I stayed home nursing my cold.
Other than the coffee machine not working, all went rather well today... unless you consider the little incident that took place... Hanoch, following instructions from Rose, requested of the administering nurse that she put on gloves. Normally quite an innocent request. But the nurse was puzzled. Why do you want me to put on gloves, I was going to anyway, she said. I noticed she hadn't actually brought any with the tray, but I stayed quiet. Hanoch explained that the last time the nurse didn't wear gloves, he had a fever straight after and, after reading an article in the health section of the newspaper about medical personnel and the importance of hand-washing, linked his fever to the lack of gloves/hygiene. She smiled, no connection, she said, and pointed out that the gloves weren't for the patient's benefit, but to protect the nurse. In Israel, I should point out, unlike in America, the customer, or in this case the patient, is never right. She tightened the elastic strap around Hanoch's upper arm real, real tight, so the vein would bulge better. Did I imagine her smile? And the needle went in smoothly. Just as she was hooking Hanoch up, another nurse came over, bringing with her the first nurse's mobile phone that was ringing away like crazy. Instead of telling the person at the other end of the line, her son it turned out, that she would call back in a moment, she took the call. She was clearly annoyed, agitated even, at her son over some domestic matter. Oh oh! Instead of pumping in the preparation (Hydrocortisone) slowly, she squeezed the whole caboodle in straight into Hanoch. She was not at all focused on what she was doing. She was still on the phone, face looking away from Hanoch and not at her own actions. Hanoch was horrified. To tell the truth, me too! He always likes the preparation to go in real slowly, but this time he couldn't even get the nurse's attention to speak to her. Before you could say Jack Robinson (whoever that was), the nurse abandoned Hanoch, shot back over to the nurse's station talking angrily to her son on the phone. Hanoch pointed out to me that in her haste, not only had she forgotten to check the rate of the drops, but hadn't actually physically attached the IVIG tubing to the machine yet! Hanoch held up the free end of the tubing in his right hand. HELLO!!! What would Rose think! I'm in charge here and what a mess...I ran after the nurse in panic! Thankfully, she started to focus. She closed the phone and came straight back with me. Phew! No harm done, thank goodness. Maybe some drops of the IVIG on the floor, or was that water? I wasn't going to ask. Hanoch will think twice about mentioning gloves/hygiene the next time, I'm guessing. Other than that a rather quiet uneventful day.

Sunday, January 7: Follow-up sequel to the soap opera. We were sitting outside the doctor's office waiting our turn. The doc called Hanoch to come in, but there was someone on the list in front of us. He always calls by the list, no skipping, so this was unusual. The mother wasn't having any of it and burst her way in the door. Placid as we are, we let her go in as she was, after all, before us on the list. About 15 minutes later the doctor emerged brandishing a piece of paper at us: "Here's the treatment orders. I've already prepared them for you". Wham! The last visit to the replacement doctor ran through my head. We never need to see the doctor ever again, just collect treatment orders and away we go. After all, at 32 treatments to date, the doc must be getting a bit fed up with us, burn-out. The feeling is mutual, not that we don't like him. However, we needed a prescription for the next batch of IVIG. He he told us to come back later. We're there for a number of hours so there's no problem.
Tail between our legs, we wandered over to the reception desk to copy the orders. Hanoch's favorite nurse, Sh.., caught sight of him and ran after us to get the bottles. Within 10 minutes he was hooked up. It was seemingly worthwhile doing without the tete-a-tete with the doctor if we could be this fast. The doc may have felt he was a wee bit out of order, or seen our dismayed faces at being brushed off at the door because he came over to Hanoch during the treatment and chatted with him for a few minutes. Then I dutifully went to collect the prescription from his office. Having been connected up so promptly, treatment was finished sharp.
Small drama before we left with the teenage girl in the neighboring chair who was in tears because she had lost her cellphone. It had been on her lap and then disappeared. Leslie helped her mother turn her chair upside down and round about every which way to peek into every nook and cranny, but the cell phone was elusive.
By the time we got home, my cold and exhaustion had got the better of me and I was packed off to bed. Hanoch went out to meet his friends. Leslie will continue the saga as the accompanier on Monday while I am forced to recuperate at home.

Tuesday, December 19: Hanoch had his follow-up appointment: regular blood tests and a check of the potassium level. Everything is back to the way it should be. We saw his own doctor who has returned from his travels. It was good to see him back. He didn't think the fever was related to the treatment. He questioned that he got antibiotics but admitted that he wasn't there so can't judge. There is no word yet about the package of Hanoch's data that he sent off to Vienna, but as it's close to the holiday season, perhaps there will be no reply for a while. He gave us a referral for the next MRI.
My head is still in a whirl from the commotion of the day. The Hanukkah party got underway when we arrived. A few basketball players from Maccabi Tel Aviv came to hand out bags, T-shirts and caps. There were activities for the young children, popcorn, candyfloss, lots of candies and gifts of candy bags for all who was there to grab. One of the activities was to decorate your doughnut. There was maple syrup, chocolate syrup, strawberry jam, frosting, powdered sugar and colored "hundreds and thousands". The children had a great time squishing and eating. Hanoch made himself one of chocolate syrup frosting with colored "vermicelli" and then polished it off with candy floss. He can't eat popcorn because it is difficult for him to swallow. I hate to think what my dental bills are going to be. His teeth are already a disaster. One of the giant size furry animal TV characters on the tiny tots children's channel paid a visit and someone took a photo of Hanoch together with him. I haven't a clue who he is, but Hanoch tells me his name is Dudy-du and he is a bear. As he is so huge and hairy, one of the little tots took fright and howled every time he came near her even though he was a friendly bear.
Hopefully, we will not need to grace the expanse of the hospital until next treatment day.

Friday, December 15: "Can I get the car keys?" Such sweet words - I never realized how happy it would make me to hear them. The temperature has stayed down so far and we're at 3pm. Happy Hanukkah!

Thursday, December 14: Warning: this is Leslie's update. Leslie took Hanoch to the hospital while I went to school.
Thursday morning, fever but low-grade. Hanoch leapt out of bed, heading straight for the toilet and stayed there for the next two hours. Come rain or high water! Diarrhea!! Totally oblivious of everyone's rants and raves. We were desperate! How we managed to get to the hospital without mishap was anyone's guess. As always, Hanoch just didn't go by the book. The doctor yesterday was surprised that he hadn't had diarrhea already, as that was the logical cause of the low potassium count in his opinion. So today he seemed pleased to hear what he had expected to hear from the start. Diarrhea!!! He was surprised to hear that we hadn't bought the potassium syrup and that it had to be ordered in advance. Never mind, he said, maybe the levels are back to nomal and we won't need it today. The antibiotic infusion went smoothly despite the hospital clowns, magicians and army troubadours visiting to spread cheer for Hanukkah. Songs and...doughnuts, Hanukkah doughnuts!!! Doughnuts don't go down well with someone with diarrhea. Shame, I had to eat them all by myself... a real hardship, let me tell you. Back to the results: They surprised the doctor once again. The potassium level was normal! He recommended that we come back next Tuesday just to make sure that the temperature and the potassium levels remain normal. As for the diarrhea, Hanoch, just drink water. Anyone for a doughnut, a Hanukkah doughnut? I feel like one already! That's funny, I look like one too...

Wednesday, December 13: I can hardly keep my eyes open. Bedtime last night, or should I say this morning, was 3am. Hanoch started feeling shivery yesterday morning. He wasn't going to be stopped from going out, so he put on a warmer shirt and left the house as usual. At 2 o'clock he was back, complaining of a spinning head. I could see he had a fever without even measuring and right enough, the thermometer hit 39.2. Alarm bells always ring when Hanoch catches something, but he took paracetamol and I tried to stay calm. The medicine didn't have that much effect as 2 hours later his fever was still at 38.2 and by 6pm he was shivering and shaking and feeling very miserable. By 8pm his fever had gone up to 39.9; he felt terrible. He had just had treatment yesterday and this seemed very unusual and out of character. We didn't want to play around with this, so we made for the ER at the hospital where he gets his treatment. We could have gone to the local hospital, but because of the proximity to the treatment, we thought we'd better be close to the source. It was a good choice even if the waiting time there was probably longer than it might have been locally. The hospital is huge with many buildings sprawling over a wide area. To get to the x-ray unit involved getting a ride in a hospital transit van service to get from the children's building to the night service x-ray unit. In a whole month or more we have had no rain. Typically, last night it was raining. Clambering up into a high van in the cold and wet of night is not what you want to do when you're feeling lousy. Leslie and I had to support Hanoch to walk even a short distance, there was no way he could have walked all that way and there were no wheelchairs to be found. So van it was. Blood cultures were taken and mostly, there was lots and lots of waiting as the staff was kept constantly busy.
There was nothing evident on the tests except for a low potassium level which we didn't know how to account for. On consultation with the duty doctor from hematology, it was decided to give him IV antibiotics (Rocephin) to be on the safe side and he was given a potassium syrup with instructions to go to hem/onc next morning. Actually, it was already that same morning. By the time we got home, we all fell into bed in an exhausted stupor.
At hem/onc later in the day, there was hardly a doctor to be seen, Wednesday not being a treatment day and a lot of doctors being out of town. Hanoch's fever was still very high in the morning, so he was given another dose of IV antibiotics. His potassium level was still low, but instead of the doctor giving him a dose there in the hospital, he wrote us a prescription to buy it in the pharmacy. When Leslie got to the pharmacy, they wondered why the hospital had not given Hanoch his dose there since the syrup prescription has to be made up by a special laboratory and you have to order it a day in advance. Leslie would order it today and it would be delivered directly to our house tomorrow. This was no use since he was supposed to take 2 doses today and tomorrow is to return to hematology for another round of antibiotics and to have the potassium levels checked again.
As I write, Hanoch looks more like himself. His fever has come down and he has fallen asleep on the chair. I hope that it will stay down over the next few hours and overnight. I long for supper to be over and to be able crawl into bed. I need to shut out the world. Spending every day of this week at the hospital and till 3 in the morning is TOO much. I could cry for tension and exhaustion.
Live update 8.30pm... Hanoch has NO fever. Thank G-d.

Monday, December 11: If I'm ever short of anything to do, I'll draw up a table of comparative measurements of doctors' egos. Hanoch's doctor is out of the country at a conference, so today was what I call a caretaker doctor's visit. Usually, any doctor, other than Hanoch's, that has seen us up until now asks for his welfare, writes the treatment orders and sends us on our way. Not so this time!
The first doctor that the secretary placed Hanoch with immediately refused to accept him. There are four doctors in total out at the conference and the remaining doctors are on overload. He wasn't having anyone else added to his list. The secretary then tried the doctor in the adjoining room. This is a doctor who we know has another CNS LCH patient. She was also the doctor who came up with the idea of Valium to help Hanoch survive the MRI, so I liked her from a distance and was quite pleased that she was the anointed one.
She was all smiles and the atmosphere was friendly yet businesslike. Her first question was when was his last MRI done - very unusual question for a caretaker visit. The last MRI was July, so she offered to write a referral for the next one which should be in January. I nearly fell off my chair. She asked about Hanoch's neurological functioning. She looked at the neurology report and was disappointed that I hadn't brought the result of the NCV test with me. Knowing Hanoch's doc wasn't going to be there, I thought no-one would be interested to see it - mistake! Then she wrote out the treatment orders. As she was doing that, she offered to write out next month's treatment orders. From then on, it all went downhill rapidly. Instead of me just saying thank you very much, I blurted out, "What, Hanoch's doc isn't going to be there next month either?!" The smiley, friendly doctor suddenly turned icy cold. "Well, you can still see the doctor even if the treatment orders are written, but if you don't want it....." She left her desk to examine Hanoch, visibly extremely piqued. I have never seen such a sudden change in attitude. Why was she so offended by what I had said? If I could have taken my words back...
By this time Leslie had left the room to take the treatment orders to be photocopied (one for the file, one for the insurance and the original for the nurses). We normally do this after the consult, but since she had intimated the consult was over, Leslie thought he would save time, at which point the doctor recovered herself and decided to order a blood count, blood chemistry and measure the IgG levels, so I had to dash out to capture Leslie and retrieve the orders.
Consultation over, all smiles again, but without the MRI referral (didn't want to bring that one up now), we made our way to the day unit for the treatment.
We had arrived world record early at the hospital. We left world record late. The nurse had some difficulty finding the vein and had to call for reinforcements. Other than that, treatment went uneventfully. It was stuffy and noisy and by the end of the day I had a crashing headache which has followed me all day today.
Today we arrived slightly later, but not being a doctor day, the time is usually made up. However, the bottles of pop were deemed to be too cold to pump into Hanoch, so I had to sit with them under my sweater for half an hour. The rest of the day went smoothly. I had brought a ton of schoolwork with me, but didn't do anything other than loll around in the chair, mope and sleep thanks to my head. It was a long treatment because of delays in between (air in the tubes, waiting for the nurse etc.) and we ended up being almost as late as we were yesterday.

Thursday, November 23: Hanoch went for the nerve conduction velocity (NCV) test. It was the easiest test so far, took all of about two minutes. The result was good - no neuropathy detected but, typical of Hanoch, afterwards he said it is his muscle that he feels going weak in his leg. Whether that is one and the same thing as this test showed, I have no idea. The trouble with Hanoch is that he is not good at expressing himself and it is sometimes hard even for us to understand what he means. I suppose it's hard for anyone to explain how weakness or pain feels. Anyway, any test result that is good is GOOD.

Tuesday, November 21: Hanoch has officially finished his two years of National Service at the ambulance station office. He may have to make up days for all the days he has taken off for treatment and medical appointments, but he is waiting for a committee to review his records and decide. So for the time being he is "unemployed". I am rather nervous about this. I liked it when he had a framework and a regular work day, but he's already volunteered for ambulance duty at the beginning of next week, so I know he won't slouch about the house for too long.
We received the completed neurological assessment (yippee!) and have mailed it on to Hanoch's doctor. Now maybe if all the data gets to Vienna within the next month, we might be able to have the next MRI reviewed!

Monday, November 13: If I had a sound proof room, I would go in, shut the door behind me and SCREAM as loud as I could... Treatment day went nicely. An elderly lady came round offering her voluntary services as a mystic healer. Hanoch always rejects Ronit's offers to give him a healing session, but he found it hard to say no to this lady. I haven't seen him so relaxed for a 10 minute stretch for a long time. As she finished, the nurse came round to hook Hanoch up. She is a newish nurse who has never attended to him before and is very pleasant. She brought him the Rolls-Royce of infusion pumps and at his request, gave him the hydrocortisone gradually so as not to shock his poor system. He felt well the whole time and had a good sleep in between. The unit was quiet. There were only two other patients as Monday is not a regular treatment day. It was a "perfect" day as far as treatment days can be perfect. But I still need to SCREAM. I need to scream out all the pent up emotions of two days of hospital. Scream the fustration that Hanoch's doctor will be away next treatment and I didn't know which doctor to choose instead (the secretary actually gave me a choice!!!), scream the frustration that the forms are nowhere near going back to Vienna, scream the annoyance at the delays, scream the frustration that Hanoch is two years and more with the IVIG treatment and that we have been doing all this for the past two years, scream the thankfulness that he is two years and more with the IVIG treatment and it is helping him, scream the thankfulness that he is doing okay, scream the fear I feel at some of the things I see around me in the department, scream the frustration of feeling that LCH is a phoney disease in comparison to the others there and yet knowing the terrible potential of LCH, scream the fear of what could be with it. Hospital. Scream.

Sunday, November 12: Well, things are never quite as planned when at the hospital. My intention was to pick up the data forms from neurology and take them straight over to Hanoch's doctor for the triumphant send off to Vienna. HAH! Not on your nellie. The secretary couldn't find the forms anywhere, so she obligingly (very unusual) picked up the phone to the doctor. He only consults at the hospital on a Sunday and Monday, so she must have rung his private number. She handed me the phone to talk to him directly. He apologized for not having been at the hospital last week, nor would he be there this week. He will send the forms to me by post and will fax Hanoch's oncologist as well. I wonder if and when we will see these forms. Tail drooping, I walked over to join Leslie and Hanoch outside the doctor's.
Treatment got underway okay until about an hour after starting. Hanoch said he didn't feel well. Sometimes he looks very pale during treatment, but feels fine. This time he looked fine, but felt bad. The nurse came and checked all his statistics. Everything was alright. The doctor was called and came almost instantly. All the attention seemed to work wonders and after being assured that all systems looked and sounded clear, Hanoch started to feel better. There was a terrible tumult all around us for most of the time - people talking above blaring televisions, children screaming and crying, and generally noise, noise, noise. Finally, around 1.30pm, the day center thinned out and quietened down and for the last half hour of infusion, we could breathe and "relax".
Hanoch has gone out to meet his friends. Leslie and I are two wiped-out zombies.

Tuesday, October 31: I never thought that I would write that an appointment with the neurologist would be refreshing. Compared with previous appointments, this is definitely a new chapter in neurology visits. The neurologist that Hanoch has seen up until now has retired from the job, THANK GOODNESS. Without getting too descriptive, arrogant would be a good starting point. The neurologist replacing him is a young doctor. We were taken within 7 minutes of our appointment time, which could be a one-time fluke, so no banking on that for the future, I know.
The main reason we were there was so that he could fill in forms or, in technical parlance, neurological disability scales to send on to Vienna. One look at all those pages was enough to dampen the spirit of even the most enthusiatic young doctor. This was beyond our consultation. They would take some time to fill up and he didn't HAVE to do it since it is for research purposes and not for the present consultation. I remonstrated politely that it wasn't just for research. We are trying to see if there is a correlation between MRI results and his clinical symptoms. I missed out telling him the crux of the whole issue that Vienna would not even review Hanoch's present or future MRIs without receiving this document. That's a bit much to heap up on a first visit.
The consultation proceeded, he took Hanoch's history and asked a lot of questions, listened to what Hanoch had to tell, and put him through the paces of the neurology exam. I have a feeling that the consultation was meant to be shorter, but in the end we were in for 40 minutes. For all the previous neurologist being such an arrogant prig, he left a terrible file, illegibile handwriting and no trace of Hanoch's visit there in January of this year.
Hanoch's symptoms are not new to us, but the doctor refreshed our memories - his speech difficulties - did Hanoch ever have speech therapy to help him? - No doctor ever took me up when I suggested it. He offered to refer Hanoch if we wanted. As well as the word dysarthria, we learned a new one, dysphonia. One side of his face has partial paralysis, he pointed out that it is asymetrical, his smile too. (Only a neurologist would see this). This, of course, is another reason why food often slips down without Hanoch being able to "catch" it to chew it first. He agreed that caution is the watchword and to steer clear of chunky steak meat. Minced meat and soft chicken is good for Hanoch. Hanoch told him about his right leg going to sleep although it has been much improved with the IVIG treatment. The doctor took this very seriously and examined Hanoch's legs with these funny instruments that they have. He has referred Hanoch to do a nerve conduction velocity (NCV) test which the internet tells me measures the speed at which signals travel along the nerve. I'm puzzled as to why he wrote the left leg on the referral note when Hanoch complains of his right leg - a moment of inattention as he was writing or purposeful? I only noticed that after we had left, so I couldn't question him on it.
After his thorough examination the doctor was more sympathetic and amenable and assured us that he would fill the forms in when he had time. He would have it ready for next week, and we can pick it up with the secretary the next time we are at the hospital. He was surprised that Hanoch had seen the previous neurologist so infrequently. He wants to see him in another six months, sooner if we feel there is any change or any need to see him.
Because we have battled with Hanoch's neurological difficulties for so long, it makes me feel that bit better when the doctor recognizes the problems and understands them and relates in a sympathetic manner. Thank you, Dr New Neurologist.

Wednesday, October 25: Surprise, surprise. Hanoch needs to see the neurologist to get some of these study protocol data forms filled in...It's only natural that any form filling would involve us too. More runarounds - insurance here we come, hospital here we come. What happened to that free day I thought I had next week?

Monday, October 16: The first rain of the season and the roads are traffic-logged. The five or six dry months cause general amnesia as people seem to forget how to drive in the rain. We passed two road accidents and It took us one hour of stopping and starting to get in to the hospital. Shoshi was on duty this morning so even though we arrived late, Hanoch was hooked up and the infusion started within quarter of an hour. He had the new machine that he had yesterday without the technician to direct, but it all went smoothly and there is absolutely nothing else to report. No hiccups. Is that possible?

Sunday, October 15: Hanoch almost fell asleep at the visit with the onc this morning. Classical music was playing quietly in the background while we were waiting for the doctor to find the e-mail explaining why we have not received a review from Vienna of Hanoch's MRI done in July. As he had to backtrack a fair amount of e-mails on his computer, it took some time. Eventually it appeared on screen and he printed out the letter and the various attachments that came with it. Basically, Vienna will not review any more of Hanoch's MRIs because his doctor has not sent in any data since February 2004. They will only review scans of patients who are enrolled on the CNS study and Hanoch's doctor has not done this. Last year, winter of 2005, Hanoch did both an update of the neuropsychology assessment and paid a visit to the neurologist. I am angry at Hanoch's doctor for not submitting the data but angry at the same time at Vienna for not reviewing Hanoch's MRI because of this. I understand Vienna's point of view entirely. However, we are talking about our son and the most important thing to me is that he receives the best care. Obviously, from Vienna's point of view, they can only help if they have completely accurate data sent to them. If I would not have brought up the subject of the MRI again today, 4 months after doing the scan, Hanoch's doctor would have once again shelved the issue. The attachments that he printed are the data collection forms and the consent form to join the 2003 CNS study protocol which Hanoch signed today. The oncologist complained that the forms would take him an hour to fill in (don't you feel sorry for him) so, of course, I apologized profusely, once when we left his office, and once when I returned the forms after reading through all of them, for giving him so much work. Getting the impression that he is doing us a favor, but at the same time remembering that I earn a lot less than he does and I sit for many hours in my time at home grading papers and preparing lessons and feeling that, well, that really is his job, is it not? Remembering too the article on clinical trials from the Histiocyte Society website which begs doctors to take the time to register their patients on the protocols despite the extra work and lack of remuneration because they are helping the children of the future and our own children too.
Leslie took the CD of the X-Ray of the neck down to the hospital radiologist to have a look at. He does not think the fusion of the C2-C3 is from birth though we had no previous X-Rays for him to compare with. There are no lesions, so the doctor is happy to lay that issue to rest.
Treatment started with a brand new infusion pump administered by our favorite Shoshi and a technician specially on hand to help the nurses learn how to use it. New is not necessarily improved. The best one is the one that is gradually being phased out as there is no-one to repair it and the equipment needed for it is too costly. In order to release air in this new hi-tech one, Shoshi had to stick a needle up into the bottle. On a Sunday she is always with the children who are anesthetized for their various procedures, so once Hanoch was hooked up, we were left to call on another nurse who is also good, but who may not have chosen to get acquainted with this particular machine. It was causing her to run back and forward numerous times to sort out various problems. Just as she ran back and forward, so the technician ran with her to show her what to do. The one positive thing I can say about it is that it timed the three hours accurately taking into account all the stops in between. The pump is currently on trial. Hopefully, it will be scrapped.

Thursday, October 5: Some nincompoop crashed into the back of the car while Hanoch was driving it early this morning. She rammed into the back of the car while he had stopped at the "give way" at the roundabout claiming that her brakes had failed (maybe she was on the cellphone and hadn't been paying attention???). It happened just a few minutes after he left the house. Nothing happpened other than the back is dented in and you can't open the hatchback door. Hanoch called us immediately after she had given him her details and made his way back to the house, shaken and upset, but fine otherwise. Later, he felt his neck sore, so he went for an X-ray even though the doctor assured him it was just from the knock and will pass soon. Everything looks good. His C2 and C3 look joined, apparently from birth, a little surprising since he has done a lot of skeletal surveys and this was never mentioned. I assume it has no significance with LCH....
Since I started school at 10 this morning, I got Hanoch to drive me. At first, he was reluctant where usually I can't get the keys off him. It was a good idea because me being beside him gave him his confidence back. The whole incident just showed me again, how, in one small moment your life can suddenly be changed / turned upside down. I am so thankful that nothing happened and once again I am aware how we need to be thankful for each and every precious minute in the day.

Monday, September 18: Today was the invasion of the clowns. About a dozen clowns descended on the unit. For once, it was entertainment and they actually made the children laugh. One came beside Hanoch and did a rabbit trick (with a sponge rabbit). Hanoch had to clench his fist with one rabbit inside. The clown had one rabbit in his pocket. Hanoch had to utter the magic words "abra cadabra". The clown checked in his pocket and the rabbit wasn't there. He checked in his other pocket (empty before) and lo and behold, the clown took two rabbits out of that pocket, told Hanoch to open his fist and there were 2 rabbits inside his fist. This was repeated until Hanoch had 4 rabbits in his fist. We really don't know how he did it, but it was very clever and very funny. They didn't stay long. It must have been some kind of promotional or publicity stunt because there was a hospital official with them and a photogtapher who asked Hanoch for his permission to take his photo.
Hanoch was efficiently attended to by the two nurses who were on duty, and somewhere in the middle, the head nurse, our new and only male on the unit floor (besides the doctors who are just passers-by), came over to shake Hanoch's hand and wish him well in his treatment (?????)
We can tick today off for being a "good" treatment day. On the way out, there was a toast for all the pediatric staff in the lobby for the New Year and as we wound our way through the gathering to get to the exit, we met Hanoch's beloved endocrinologist who shook his hand warmly and the GI doctor who was also warm smiles.

Sunday, September 17: It was a "nice", uneventful treatment visit with many sweet treats handed out by kind volunteers as we are five days before Rosh Hashanah, the New Year. Hanoch's doctor was not there. He is in Switzerland for an oncology conference. Eventually, we will get to meet all the doctors in the department as he seems to be out of office quite often. Obviously, we've been there far too long which is why we note when he is there and when he is not. We were assigned the doctor next door who nodded to us in the corridor when he saw us sitting there, but didn't call us in until 45 minutes later. He didn't have anyone else waiting, he was just wandering back and forward in and out of his room. When we finally squeezed ourselves into his tiny room, he apologized for not realizing we were waiting for him. Yeah, right... He wrote the treatment orders, provided a new prescription for next time and checked Hanoch briefly since he has had the sniffles for the past few days.
At the nurse's station there was a new male nurse, the first male nurse on the floor. He is the new head nurse, flexing his head nurse male muscles by asking the helper to answer the phone when he was sitting right next to it. Of course, the call was for him. We placed the IVIG bottles in front of him with the orders, so he looked at them and then at his chart, didn't seem quite sure what the next step was. At that moment our knight(ess) in shining armor appeared, Hanoch's favorite nurse, Shoshi, swept up the orders and bottles and told us to sit down. Hanoch was hooked up quickly and efficiently and he said he didn't even feel the needle going in at all. We were home by 3 o'clock which was good for a Sunday. The one consolation of Hanoch's doctor not being around is that I'm hoping that he will meet one or some of his Austrian colleagues in Switzerland and we will hear what happened with July's MRI from the official source.

Monday, August 21: Another month of treatment over and done with. Oh that every month were August - no traffic on the roads and no worries about taking off school. One of the nurses who was on duty today is one that we try to avoid if we can. She doesn't tackle putting in infusions at all, but she does other back-up work, such as flushing out the kids' ports and hooking people onto their treatment if they are already attached. She once spilled some of the precious IVIG out because she didn't pierce the bottle properly and a different nurse had to come and rescue the bottle with some bandaid. Since Hanoch refuses to keep the catheter in, he always has to be pricked afresh. The other nurse on duty, M., came to do that part while nurse I. attended to the rest. He was hooked up quickly and efficiently, so much so that I asked Hanoch if he had got the preparation. Of course, that was why it went so fast. He hadn't. Nurse I. was surprised that he gets preparation. Aren't nurses supposed to read the treatment orders before they attach the kids? So she disappeared off to bring the hydrocortisone. Then she forgot the paracetamol. Since she was about to measure his blood pressure, she disappeared off again leaving his file lying around. I took the opportunity to have a look at what the nurses' file looks like. Treatment orders were on top, with the page from yesterday registering blood pressure, sats and temperature. Below that was a page dated 2004 with his diagnosis in large sprawling handwriting - lang cell hysteocytosis - the nurse was spotted on her way back, so I quickly laid the file down again. I wonder what happens when you look up hysteocytosis in Google. Just being nasty.
Treatment went well and even though he started early, we still didn't emerge until 1.30. From there we went to buy some lunch and then over to the eye department to change the date of his next appointment. Sheba is a huge hospital with many different buildings and in trying to stay indoors for as long as possible, we got lost and ended up wandering around in the blistering heat until we re-oriented. Changing an appointment for neuroopthamology is no simple matter. The clerks are not allowed to make any changes without the doctor's approval. I had to write a letter of request, and they will post us out a new date. I should have remembered this from 4 years ago when I had cancelled his appointment as soon as I knew he was to undergo surgery. The day after I cancelled, I got a call from the doctor herself. We had to bring Hanoch for his appointment on the morning of his operation. Since then, she has "improved" her system by making us write letters to change or cancel and only she can give the go-ahead. Well, I suppose it's nice to be wanted.

Sunday, August 20: Routine ""fill up the gas" (IVIG) today. Being holiday season, traffic flowed freely and we got to the hospital by 9 o'clock. Luckily, we were second in line for the doctor because there was a string of people after us and the first patient was in for almost half an hour. Hanoch was in for ten minutes. There wasn't much to do. There is no reply yet from Dr Grois on the last MRI. I have been waiting with anticipation for her report, so I felt disappointed. The doctor promised to write and find out if she received the disk. Dr Grois and/or her radiologist Dr Prayer are possibly on holiday, so I just have to be patient. I get down-hearted and bad-tempered when I have to be patient for these types of things. I like instant doctors, instant attention and instant replies. What's more, the doctor will be away for Hanoch's next treatment, so that made me even more depressed. Any replacement that we see, however, good or nice, is just for writing the treatment orders and general maintenance, not to schmooze with us over MRI reports. The more time passes, the more the momentum reduces. It is not something that is urgent. We are not hanging on this report and Hanoch has his treatment whatever happens, but still, I would like to read Austria's opinion and see how it compares with the report from here. Thank G-d, Hanoch is feeling good, no specific complaints. The holiday he took from the office helped to refresh him, and he has not had more lapses in memory and mistakes at the office. His leg hasn't bothered him again since last week, so he didn't mention it. I was very well-behaved and let Hanoch do the talking for himself.
In the day center, Shoshi, Hanoch's favorite nurse came to attend to him. We are all relieved when she is around and looking after Hanoch. He had a good hour's sleep during treatment and Leslie brought in lunch from the cafeteria. All in all, it was an uneventful doctor and treatment visit, the type that everyone hopes for if you have to go to the hospital at all. The minute we got home, Hanoch left for the local ambulance station for a couple of hours of volunteering and made one call with an ambulance. He returned for about two minutes and has gone out again. Meanwhile, I am wilting. I need to recharge my batteries for tomorrow.

HAPPY 20th BIRTHDAY HANOCH !! Wishing you many many more HEALTHY and HAPPY birthdays!!!

Friday, August 18: 20 years old - till 120 years - in health. I still can't believe that our little Hanoch is already 20 years old. Where have all the years gone???
Yesterday he took the car to the ambulance station office in Petach Tikvah, drove back home after work to take Ronit to Ranaana (neighboring town) to meet her friend, came home for half an hour before driving round delivering food packages to needy families in Kefar Sava which he does with a voluntary organization. After that, he drove back to Ranaana for a reunion with his classmates and their homeroom teacher who taught them for three years in high school. At midnight he drove one of his friends back to Tzur Yigal, another neighboring town, and finally arrived home at 12.30 am. Go, Go, Go Hanoch, always in health! We love you!!!!!!

Sunday, August 13: Hanoch complained of his leg falling asleep, first time in a very long time. This makes me feel guilty since I postponed this month's treatment by one week, from today until next week. The approval for the IVIG runs out on August 17 and although we have submitted all the necessary papers, we still have not received confirmation of extension. Not that that seems to matter because the pharmacy, very unusually, released the bottles of pop last week. So actually, treatment could have gone ahead today, theoretically at least.

Monday, July 24: Neuroopthalmology visit. The doctor was all smiles, very unusual. There are now two doctors consulting side by side, so maybe her work load being less contributed to her good mood. She was pleased that everything was stable in her examination. She pointed out the optic nerves on the MRI. They are still thickened, but this has been the case ever since she first started seeing Hanoch.
After finishing at the eye department, we went to visit friends who live quite near the hospital, but who we rarely get to see these days as everyone has such busy schedules and after treatment, we are always too tired to pop over. It made a refreshing change and gave a little more of a summer holiday feel to the day even if we had to have the medical part first.
The written report of the MRI was waiting in the mailbox when we arrived home. It actually seems more favorable than the doctor suggested. Fairly stable compared to the last one is the summary. The lesions in the brain stem are there as before, but there is a less strong signal in other parts of the brain stem. I like it when I read the word LESS. And there is nothing new - which is a great relief.

Wednesday, July 19: It was a dissatisfying call with the doctor. I should actually feel satisfied with the answer, and I am. Nevertheless, I am slightly on edge, maybe because of the way the conversation went. He didn't call me which is a good sign. I called his office at intervals in the afternoon but there was no reply. Eventually, when it was already after hours I could wait no longer and called his mobile phone. At first, there was silence as he had to register who I was. To me, Hanoch is the most important patient he has, but this reminded me that he is one of many, and I suppose if he is not in the forefront of the doc's mind, then it is a good thing. I also might be being picky here as I used only our first names and realized afterwards that I should not assume he is automatically thinking of us 24 hours a day. Then, when he remembered who I was, he asked: "What test?" - -!!!!- - He collected himself and said that there are no new dynamics, same as last MRI. So I am happy, yet will not be thoroughly put at ease until I see the written report from here, and more importantly, the written report from Dr Grois which, the last time, differed from the one here.

Monday, July 17: Hospital visits are unpredictable. Today was the world record best Monday visit for many months. We walked in the door and there was Hanoch's favorite nurse, Shoshi, smiling and welcoming. She is not usually on duty on a Monday as she only works part-time, so this was a real surprise. Hanoch was hooked up within five minutes of arriving. It was a nice, quiet and "relaxing" morning as far as hospitals can be relaxing.

Sunday, July 16: It was not quite the doctor's visit I had anticipated. We had a fairly long wait to be taken because there was an acute case before us and the boy and his parents were in a long time. When it was finally Hanoch's turn, the doctor was clearly distracted. He has changed his e-mail address, therefore did not receive my note telling him Hanoch had done the MRI. So there was no result yet. We won't get a result till Wednesday at the earliest which is the meeting day of the oncology team with the radiology staff. We needed a letter for the health insurance to accompany a new 29G form which had to be printed out and signed. We also needed a new prescription. I had to come back for these things later as he wanted rid of us as quickly as possible to continue attending to the previous patient who had been told to go off to do something and come back again. He even made a mistake writing the treatment orders and had to be corrected.
Treatment started late, but went well. Hanoch always looks terribly pale during treatment, but he didn't complain of anything. Now that I am thinking of it, no nurse even came to check blood pressure or temperature. They usually check it close to the beginning or at least in the middle somewhere. It was noisy all around, very busy, and the television was blaring with the news all day as we followed the events of where the missiles were landing in real time. The Tel Aviv area has now been warned by the Home Front Command to be alert from now on. I'm not all that sure how to be alert for a missile coming in...

Thursday, July 13: A letter from the head of medical administration at the hospital arrived. Writing in very high Hebrew, he thanked me for contacting them, saw that our personal problem had been solved and stated from now on there would be new directions whereby patients of the hospital would either make their own appointments at the MRI department, or the treating department would make the appointment for them. They would no longer have to contact the "call center". The letter exceeded my expectations. I am happy that no patient will have to go through the barter system of appointments when something timely is needed.
It seems slightly surreal writing about petty bureaucracy, however, when missiles and rockets are falling up north and down south and we could be plunged into full-scale war if Syria or Iran decide to enter the fray. There are plenty of lunatics on this side of the world and anything is possible.

Monday, July 10: Technically, the MRI went very well. In the morning, I kept Hanoch busy by letting him have the car and giving him lots of errands to do. By the time he got back there was lunch followed by a snooze in the chair (he's just like an old grandpa when it comes to that), so he had very little opportunity to feel anxious. Ten minutes before we left the house, I gave him his magic Valium pill crushed on a spoon. For the first time in I don't remember how many MRIs, he got a different technician, someone who must be new there. She even flashed a smile when she called him. It's amazing what a difference a smile can make. My heart melted even though I was not the one going in. With Valium and a pleasant technician, I knew he would be alright. Leslie met us at the hospital as he always goes in with him while I guard the valuables. Leslie said it was a spanking new machine, very clean and very impressive, but that it made a horrendous noise. Hanoch had ear plugs and ear muffs and his head was fixed in place whereas brave Leslie wasn't going to have any sissy earmuffs. He wanted to be alert in case Hanoch needed anything or he had to hear anything he should. The minute the noise started, he regretted that macho and selfless moment. The pictures on our disk are superbly clear, all 292 of them. Well done Hanoch for lying completely still. We can still see the known lesions. We can't tell how they compare to previous scans. Now all we have to do is W--A--I--T.

Sunday, July 9: THE MRI IS TOMORROW!!!! Poor Hanoch when he heard - his eyes nearly popped out his head...I have no idea if this is connected to the letter or not. I called the service center and once again explained the situation. The clerk promised to find him an earlier appointment and she would call me back. Believe that or you believe anything, I thought. I got another letter ready to fax to the call center itself, but decided to give her the benefit of the doubt till lunchtime. When she called and offered tomorrow, I nearly fell off the chair. I think she was just as surprised that I said yes and had all the relevant documents ready. Maybe I just struck lucky with that particular clerk this morning. Who knows how all of a sudden an appointment has materialized from one day to the next.

Wednesday, July 5: I have stuck my neck out today for good or for bad. Hanoch's MRI has been scheduled close to the middle of August, that is almost two months away from the doctor's referral. He is supposed to be on stand-by, and I called this morning to see if there was any chance of an earlier appointment. It used to be that we went straight to the MRI department and got an appointment within two to three weeks. The girls in the office got to know us and were very friendly. The system has suddenly been changed and you have to call a central number to get scheduled. The clerk on the phone was very rude, way out of line. It is no use getting into an argument on the phone because you are faceless and they are faceless and it means nothing to them, but it means everything, including my health, to me. I cannot learn not to get upset at these things. This afternoon I sent off a letter to the director of the hospital describing the situation. I didn't mention the clerk at all, just kept it very general, that it is ridiculous and unreasonable that somebody who is on treatment should have to wait for two months fom the issuing of the doctor's referral in order to assess his current health status. Whether this will do any good, I have no idea, but it has made me feel slightly better that I am attempting to do something other begging the clerk and trading useless words with her.

Monday, June 19: My weekly horoscope's tip for this week was to give way and not be obstinate. Unfortunately, I didn't take its good advice this morning at the hospital and caused myself a great deal of aggravation. When the nurse came to hook Hanoch up to the infusion, she brought the infusion pump that we don't like. After setting everything up and delivering the preparation (hydrocortisone and paracetamol), she set the machine on what I considered too fast a drip rate based on previous experience with similar machines. The IVIG should be administered at a relatively slow rate so that there is not too much volume load placed on the body. The nurse disagreed that it was too fast and told me how to do the arithmetic. I know the theory, but that's not how it has worked in practice before. Standing my ground didn't get me anywhere. She sat with me for 20 minutes telling me how she was not going to change the drip rate and if it was going too fast, then it was too fast for all the chemo treatments as well and that meant the pump was not working properly and should be taken out of use. We would try one bottle and see how long it lasted. I was not at all happy that Hanoch was to be the guinea pig for whether the machine was working properly or not. This 20 minute ping pong just made me extremely annoyed and aggravated, but didn't budge her at all as she was not prepared to lower the rate. Every other nurse sets that type of machine lower, but they obviously don't know how to handle it properly, she does and she's not changing it. So treatment got going. The first bottle got changed 10 minutes early so that bubbles didn't collect in the tube (when does the nurse ever get to you before the machine starts beeping or even 10 minutes later?). The second and larger bottle took 5 minutes short of 2 hours though there was a lull in betweeen when she had to stop it to remove air bubbles from the tube. It was almost okay in the timing, but the whole incident left a bad taste. The customer is never right, nor needs to be pleased.
Just after Hanoch had started his treatment, I went over to find a chair on which to perch his tea beside his free arm since someone had already usurped the table (which I usually usurp and which I consider ours!) As I was about to reach for the chair, none other than his doctor appeared on the scene by chance. He told me that he has put Hanoch's name down for a 10 day trip to Florida in January (????) He wants him to become more independent and start severing the umbilical cord. I knew from the collywobbles I had in my tummy the minute I woke up this morning that it was going to be one of these days. Yesterday, the doctor had also talked about Hanoch being more independent and I assumed this to be a veiled criticism of me who does too much talking in his office. That is not to say that I don't let Hanoch speak for himself, so I felt mildly insulted. He cannot fathom what it entails to have problems swallowing, an action so natural that no-one normally pays any attention to it. He cannot understand the constant fear and tension that we undoubtedly live under, not least Hanoch. Hanoch is independent when he wants to be, but for some things he is definitely still very dependent and almost childish. He has an excuse, we try not to feed his fears and we try to encourage him, and maybe we could do more to help on his independence, but we are also scared for him and for us. I don't know why I get so upset over this because when the time comes, Hanoch will make his own decision about going just as he has done in the past. One thing the doctor did concede was that he would make sure and tell one of the adults who accompany to keep a special eye out for Hanoch.
Even making the MRI appointment turned out to be beset with difficulties. We went specially over to the unit as we always do, but the system has changed and you now have to call a central number to schedule. The secretary took the referral page and copied it and gave us a card with the number to call. The voice on the other end of the phone wanted to know if it was an urgent appointment. Stupidly, I said no since we usually get an appointment within two to three weeks. First appointment is the middle of August at 10 o'clock at night. I insisted Hanoch gets fitted in at the beginning of July. She wrote in the August appointment and promised to call me back if she got a slot for July. I can see I'll be calling her and bugging a few times more.
It's all one big whine today. I need to get out and walk and clear my head, or tuck my head under the covers, close off from the world and hibernate. WHERE"S THE VALIUM???!!!!

Sunday, June 18: June is the LCH recurrence anniversary month, it being 4 years and 2 days (June 16, 2002) since the first incriminating MRI, and 2 years since the beginning of the IVIG treatment (beginning on June 20, 2004). Since that's not much of a reason for a fanfare and celebrations, we spent the day as befits an anniversary of LCH with a LOOOOOONG day at the hospital for treatment.
Traffic flowed and we arrived at 9.10 which is fairly early. Usually if we come in at this time, we are first in line at the doctor's because the other kids do blood counts first and have to wait for these to be ready. Not today. This morning we were fifth in line and didn't get in to the doctor until 10.15. We had some catching up to do because we hadn't seen him last month. For Hanoch's last choking on the paracetamol syrup, he suggested he tries crushing a pill on a spoon with a little yoghurt or chocolate dessert. That way he only has one spoon of torture instead of four. Hanoch is to try it out even if he doesn't need it just to test the method. Since he takes Valium before MRIs like that, I don't know why we didn't think of that method before. Talking of MRI, we have a referral to do another one.
Treatment only got underway at 11.15, two hours after we had first arrived at the hospital. His favorite nurse, Shoshi, was on hand, so he was hooked up with no problems. There was a mix-up and I had to return to the receptionist who had forgotten to provide a green slip for the blood count and gammaglobulin test. That was fixed up quickly. The secretary was clearly distracted because she handed me a pink slip for a blood chemistry test as well. The nurse had already taken the blood and started the IVIG, and since the doctor had not ordered blood chemistry, I returned the pink one. We arrived home at 3.30 feeling very tired and worn out. By we, that is, Leslie and I. Hanoch, after a cup of tea, took the car to the garage to get the tyres checked and spare fixed.

Sunday, June 4: Hanoch was chucked out of gastro. It was very ironic. At the last appointment, the dietician had made a mistake with Hanoch's weight. She registered him at 39 point something kilos instead of the 43 point something kilos that he had weighed in at a few days earlier with the local dietician. When the doctor nearly went berserk demanding an instant decision on a PEG, Leslie suggested there was a mistake, and Hanoch got weighed again, truly enough to register at the 43 point something. This time around, when Hanoch registered in at his 43 point something, the doctor, not having updated his computer from the 39, was overjoyed at the new figures. He couldn't understand why Hanoch had not managed to do this miraculous weight gain earlier. Of course, neither Hanoch nor Leslie saw fit to point out that the doctor had written the wrong figures into his computer the last time and that his weight was actually approximately the same as last month give or take 100gr that he had lost. Never mind also the last choking episode since Hanoch had already made up his mind that the PEG is not for him, certainly not at the present. So, the doctor, pleased as punch that Hanoch had gained weight so nicely in the space of 5 weeks, told him that he didn't need to come back to see him again. Hanoch and Leslie arrived home chuckling like naughty schoolboys. If I had been with them, I would have shown the doctor his mistake, so pretty lucky for Hanoch that I wasn't.

Monday, May 22: We arrived at 9:30 am. By "we", I mean Hanoch and I (Leslie). Today was matriculation in English and Rose had to be at school, so I was accompanying Hanoch. I expected Hanoch to be hooked up pronto, but we had to wait till 10:40 am before he was finally (splitting the infinitive - I fail my matriculation in English) hooked up to the IVIG. Mondays are not treatment days, so I had been carefully briefed by Rose what to expect. Quickly walk past the reception area as if you've been there before and go straight to the nurse's station. Nurses usually leave around 2:00 pm, so the quicker you (well, Hanoch) gets hooked up the better.Of course, nothing ever goes as planned. As fate would have it, the person just before us, a teenage girl, was also getting IVIG, but a much bigger dosage - a five hour job - compared to Hanoch's three-hours. Do the maths (Ok English is fractionally easier) The nurses no longer had that sense of urgency when it came to hooking up Hanoch. We waited and waited and ...waited. "Do you always wait this long?" I asked Hanoch, not being used to this. He shrugged his shoulders. "Not usually this long." In the meantime, the father of the other patient had accidentally dropped a bottle of perfume out of his briefcase . It rolled on the floor and smashed. He couldn't find any nurse to get him a dust pan to clean up the broken glass. But it was a pleasant smell - a nice change from the usual hospital squeeky clean antiseptic smells. He put some behind his ears and gave us all a laugh. "Well no point in wasting it all" he said philosophically..."It was an expensive gift"
A nurse by now arrived to hook up Hanoch. Once again, Hanoch's arm, our man of steel, defied the needle. Boing! Now the needle was stuck in Hanoch's arm. Vertically. Stuck and no blood whatsoever. How on Earth did that happen? The smallest accident and blood pours forth. Not our Hanoch. Stick a needle in and nothing!!! Must be a law of biology. Anyway, Hanoch looked like William Tell's son after W.T. had just missed the apple by a mile. The nurse disappeared to call for help. The young girl patient, who only yesterday was petrified when the she was hooked up now saw the funny side. Poor Hanoch. Abandoned. He could do nothing but stare at the "arrow" in his arm. I remember that feeling once before when I was a child and the school fire alarm went off. Our ancient teacher, "Ma Black" (she was ancient as my uncle had had her as a teacher a hundred years before, hence her name) picked up her handbag and fled the classroom. We were left like idiots waiting till the principal came round inquiring why no-one of our class had gone to the school yard to safety. Duh! I digress. After a few minutes that seemed like forever, the nurse returned with reinforcement. The other nurse carefully removed the embedded "arrow", found a different vein and at long last hooked him up.
I can't know for sure, but somehow I think that girl opposite will no longer cry as the needle goes into her arm next time. She saw an act of bravery today. And you made her laugh, Hanoch. You really are a hero!

Sunday, May 21: I am in robot-mode, could just sit down and cry for tiredness. Not that it was a bad day for another first day of treatment. Hanoch's doctor is abroad, so we didn't see him. We don't seem to time the treatment days well because this is the second time he has been away within the last two months. I was disappointed that he was not there. Usually, we get assigned to a junior doctor, but the doctor we have seen previously was also not there. So we were assigned another senior doctor, a doctor who we have known by sight and nodded to for the last 4 years. When Hanoch had the fever that refused to budge all that time ago, and one day we had gone in yet again to see the doctor, this other doctor had been sitting in Hanoch's doctor's office when we arrived. I knew that they were discussing what to do with Hanoch as he was a puzzle. We had been going in every few days for blood tests which turned up nothing for every known virus or bacteria the doctor could think of testing for. Hanoch didn't seem obviously ill, so the best thing that the two doctors together could come up with was that this might be a fictitious fever. The next MRI showed the cause was actually the LCH spreading in the brain with numerous new lesions, and from then on, we have been on nodding terms with this other doctor.
He made us wait half an hour till he saw us even though we were first on his list and no other patients had arrived yet. Since it was 10 o'clock when we were taken, I reckon that it is his quirk that he only starts at 10am despite being in the office earlier and there is a queue of people waiting for him. He clearly wasn't going to get too involved with the file, he was only seeing us to write out the treatment orders. He did, of course, ask Hanoch how he is, so we told him about the latest choking. He agrees with Hanoch's doctor that as long as it is liquid that Hanoch aspirates, it is safe enough. He can't really come to harm, frightening as it is to see him gasping for breath. However, I am not sure that I accept that totally. He has never witnessed Hanoch turn blue, maybe then he might change his mind. I suppose it gives us some comfort to hear that even if I have my doubts about it. The danger is with solid food, and for that we do have to be very careful. He asked Hanoch a few questions and wrote the orders. Hanoch's doctor writes a prescription to cover us for 2 months so that we have less of a run-around with ordering the IVIG and then collecting it from the pharmacy. When I asked this doctor to write us one for the next 2 months, he smirked. It's not really kosher to write for 2 months, but, I suppose if his colleague can do it, he can too, so he obliged us. He was pleasant, but I missed Hanoch's onc.
The first needle poke didn't go well. I blame this false start on the clown in the purple dress rather than the poor nurse. Whenever we see the clowns in their colorful costumes with their round red noses, we try to avoid them. They are not funny people, they have no script, no talent and they use the patients and their parents as props. This particular lady clown decided that Hanoch looked good prey for her. First, she started flapping a table tennis bat in front of Hanoch's face while the nurse was wiping Hanoch's arm with alcohol. The nurse got flustered and annoyed, and asked her to stop. The clown, unfazed, tried fixing surgical gloves onto Hanoch's shoes. Leslie asked her to leave us and give us privacy and the nurse quiet to work. Offended, she told Leslie she was there to make people happy. Once peace was restored the nurse was having trouble with the needle. She had to play with it to get it in place, got some blood out for blood tests, but had to give up when it became too painful for Hanoch. She tried flushing the vein, but the needle was out. Hanoch found another vein for her. He can almost do a self-service treatment now. It was very noisy in the unit, and a boy trying to be sick into a barth bag next to him put us off our morning coffee. On an average Sunday treatment day, we get through a morning sandwich, uncountable cups of tea and coffee, a snack lunch, and more tea and coffee. It helps pass the time. Tomorrow, treatment day 2.

Friday, May 12: I'm sorry I was so flippant about Hanoch's cold. We got punished double for that. Hanoch had another choking episode in the early hours of the morning, for which we are all partly to blame. I told Hanoch that he should take Paracetamol and have an early night. Instead of giving Hanoch the medicine and ordering him to bed (not so easy to order a 19 year old to bed), Leslie and I started watching television and fell asleep, leaving Hanoch still sitting up. A pesky mosquito woke me up at midnight. Hanoch was still up, and Leslie was working at the computer. Hanoch had still not taken his medicine and was still coughing almost non-stop. The Paracetamol seems to calm the cough down, I don't know how it has this effect on him, but it usually does. Bleary-eyed, I ordered him to take the medicine immediately and get to bed. Stupidly, I did not give him the medicine myself. Leslie was there, and I thought he was with him. He was, but he and Hanoch were sharing some kind of joke, and Hanoch started to laugh, the worst thing he can do when he is eating or drinking. When Hanoch eats or drinks, he has to concentrate hard on what he is doing. Drinking fluid is especially problematic as the fluid spreads too quickly in the throat before he is able to swallow. Realizing being beside Leslie wasn't a good idea because he was about to laugh, he went into his bedroom to swallow the medicine. At the same time as he was trying not to laugh, he was also coughing. The syrup was in his mouth. He always takes medicine in syrup form where possible because he is not able to swallow a pill together with fluid. He cannot eat and drink at the same time as he is unable to coordinate swallowing both at the same time. The syrup went down the wrong way and he choked. It was a bad choke. Leslie tried banging him on the back. Hanoch came out of the bedroom gasping for breath, like an asthma attack, also retching to be sick. Leslie tried to get him to sit down, but Hanoch refused to sit. Eventually Leslie and I forced him onto the bed. He had left his Ventolin in his room, but even when Leslie brought it, he didn't want to use it. Somehow, despite the panic, he came out of the gasping. He was ghastly pale.
We were all very shaken. Ronit wanted to give him a healing treatment, but no-one was in the mood for airy-fairy stuff. Hanoch felt there was something restricting him in his throat and that he couldn't breathe properly or swallow properly. He was now coughing again, and could hardly talk. We took him round to the ER even though I had my doubts about what good that would do. We went to the local hospital which is a few minutes drive away. This was our first experience with Hanoch in the adult ER, and if pediatricians don't know what LCH is, I was worried how we would get on in the adult world.
We didn't have too long to wait to be attended to. A young doctor came over. I always carry an official letter signed by Hanoch's oncologist stating what Hanoch has. We explained what happened and I showed her the letter. She wasn't really very sure what to do with Hanoch, and gave herself away as not knowing what LCH is when she asked if Hanoch had had a bone marrow transplant. She took some blood, and sent him for an x-ray of the lung and to the ENT department to check there was nothing obstructing his throat. Gradually, what with all the waiting, Hanoch began to calm down. He was coughing slightly less and he could talk better. The x-ray was clear and the throat was clear, so they released him home. Hanoch and I got to bed around 4am while Leslie stayed up to watchdog for another hour.
Leslie went off to work after 7. Hanoch got up at 8, again coughing non-stop. This time I made sure I sat beside him till he had swallowed all 4 spoons of Paracetamol. I think it took about half an hour to take the spoons and another half hour till his coughing quietened down and he managed to take some tea and crackers. He has taken it very easy today. He is like a caged-in animal, desperate to go out, but there was no way I was going to let him out the door.
Hanoch, get better quickly!

Thursday, May 11: Hanoch has been at home for 2 days with a bad cold. It's like a one-man band - gargantuan sneezes, hiccuping, burping (after tea which he has lots of), almost constant coughing and squeaky nose-blowing. We are all trying to stay out of range.

Tuesday, May 9: I sat with the rapist clerk again at the insurance office this morning. This is the same clerk who made my life miserable getting Hanoch a first consultation with the gastro specialist. Every time we go to the hospital for gastro, we need to bring confirmation of insurance coverage. I know from talking to one of the very nice clerks (yes, they do exist!) the last time that we needed this vital piece of paper that Hanoch has been granted blanket approval to attend gastro at the hospital for a year. All the clerk has to do is to print out a confirmation, no fuss involved.. As soon as I saw the clerk that was on at reception, I considered turning around and coming back another day. However, I don't have that many days to waste, so I decided to be brave and face the music knowing that there shouldn't be any problems, but expecting a few.
This clerk is SO nice, she always asks how I am, and how Hanoch is, then my blood pressure starts to rise as I watch her neatly varnished, bright red nails stab the keyboard. She's all puffed up, like a proud peacock. "You should bring a doctor's letter". I know that she doesn't need a doctor's letter once a blanket approval is given, but to argue or just hand over the letter that the doctor wrote after the consultation? I didn't feel like crossing swords, so I showed her the letter. What she should have done is take the letter, photocopy it for the office records and return it to me. What she did first is read every single word. This is why I call her the rapist. She did not need to do this. It is not her business and it annoyed me intensely. "So they want to feed him?" Now it was not my hormones, but I knew that if she didn't hurry up and print that page, I was going to cry. She got up to photocopy the letter which gave me time to compose myself. I got the confirmation and flashed her a smile....till the next time.

Sunday, April 30: I am merely the reporter of today's consultation with the gastro specialist as Leslie took Hanoch into Tel Aviv for the appointment while I went to work. The gastro appointment is at a different hospital to the one that Hanoch is treated at in hematology. The smiley's mouth was in down position as Hanoch has lost a kilo since his last visit. The threat of the PEG feeding tube hangs over him if he cannot improve his intake of food. The doctor did not trust the weight chart that Hanoch had brought from the local dietician. He sent him out to be weighed with his own dietician and when they came back, he was horrified that Hanoch had dropped 4 kilos. In that few seconds, eyeballs flashed from one person to the other -doctor to dietician to Leslie to Hanoch, with the piece of paper and the figure that the doctor was holding to the piece of paper with the figure that Leslie was holding. The doctor decided to send Hanoch out to be weighed a second time. While Hanoch and the dietician had disappeared, Leslie was confronted by the doctor - "you're going to have to make a decision now", the doctor believing that his dietician must be more accurate than ours. Sigh of relief as the two returned. The first time Hanoch had been standing on the edge of the digital scales, which makes a big difference to the accuracy of the reading, and on the second weigh-in, he had actually gone up half a kilo from the weight that the local dietician had written down.
The doctor is nevertheless convinced that the PEG is the way to go for Hanoch. He admits that it is a deal to have it put in, but it will be worth it for him in the increased quality of life that he will have, providing him with more nutrients and calories and therefore, added energy. Hanoch is very against having the PEG. He sat with the doctor's dietician who made out a more realistic menu for him than the local dietician does. She writes so many things for him to eat in a day that it would take Hanoch 3 days to eat her menu because he is so slow with eating. He is to show some better weight gain for his next visit in another month.
We understand why Hanoch doesn't want a feeding tube. We are not too enamoured with the idea of it either. Perhaps it is because it seems like a step in a direction that you don't want to go in, that of being a sick person whereas Hanoch is determined to go about his life as regularly as he can. The doctor is trying to make him (and us) understand that while it is difficult to accept initially, it will be worth it in the benefits that it can bring Hanoch and actually make him healthier and fitter. He calls it a button rather than a tube as the button is what you see from the outside and you only connect the tube when you want to feed. For us that description is to make it more palatable, but it remains a feeding tube. None of us feel ready for that step.

Monday, April 24: Today's treatment was quiet and calm. We were stuck in a huge traffic jam on the way in with the result that it took us an hour and a quarter to get to the hospital, a journey that shouldn't take more than forty-five minutes at most. We don't have to check in at reception on subsequent treatment days because the doctor's orders are written to cover all the days for that month. We whisked past the clerk who had given me a hard time yesterday, but she threw us a large grin which must indicate that all is well on the insurance front.
The two nurses on duty were sitting around waiting for customers, surprised that we were so late. They came over almost right away to set up the infusion, grumbling that I had brought the bottles of IVIG with an ice-pack, and they were too cold to pump into Hanoch's veins right away. The next grumble was that Hanoch had not left the Venflon in from yesterday. There's no use the nurse complaining about that because he agreed to have it left in only once and spent the whole night worrying about it. It wasn't worth the saving of being pricked anew. They seemed to be in a hurry to get rid of us which meant we were finished in good time despite having arrived late. There is no way to judge timing when you go to the hospital. You're sure to be in for a surprise which can work either way.
I feel like I have been in a daze all day and I still haven't come out of it, maybe tiredness hanging over from yesterday. Hanoch has been out and about since we got home. He looked a little pale, but less so than yesterday and was less tired.

Sunday, April 23: Treatment day has left me emotionally and physically drained. So who was getting treatment then? Okay, I admit it. It was Hanoch.
The day started well enough with the doctor. He is back from ward duty and from a "holiday" accompanying a group of cancer children to Holland. In hindsight he remembered that Hanoch could have joined them. He always asks Hanoch how he feels, and Hanoch always answers "improving". Sipping a few mouthfuls of tea without a spoon once in a while qualifies as "improving", but who's going to argue? There was a student sitting in with the doctor. He gave her Hanoch's history in a nutshell. Of course, at the mention of Langerhans cell histiocytosis, it was obvious by her puzzled look that she didn't have a clue what he was talking about. He promised to fill in the details later. I reminded the doctor that he hasn't checked the IgG levels and T-lymphocyte levels for a very long time. As Hanoch is receiving the IVIG every month shouldn't we check that the levels are normal. He doesn't see that the IVIG should cause a problem with the IgG levels. But he did agree to check a few T-cell markers.
The bureaucratic procedure is that the doctor writes the orders for treatment and any other tests he wants done. We then take these orders to the one of the clerks at the reception desk who "processes" the orders. She circles the boxes on various pieces of colored paper according to whatever the doctor wants done. When the clerk handed me the orders for the nurse along with one piece of green paper marked CBC plus slide together with only 3 computerized stickers, I realized we were missing some papers and stickers. Oops, she hadn't noticed there was something else written there. I wonder why??? The immunological markers are not something that are covered by our insurance as a matter of course. She doesn't know how to define Hanoch as a patient. He is not an oncology patient, he doesn't get chemotherapy, and he doesn't do bone marrow aspirations. On the other hand, he is not the "other" (presumably meaning those lumped in as ITP, thalassemia, hemophilia etc., the hematology patients). He is neither "this nor that". She doesn't know how our insurance defines his disease. She doesn't know if they will approve the marker test, and, to be on the safe side, we would have to deposit a check of approximately 500 US dollars (the cost of the test) with the hospital, just in case the test is not approved.
I felt the blood drain out of my face and suddenly felt physically sick. Here we were again, LCH as the orphan disease, not knowing where we belong, and being told this by a clerk at the reception desk! I felt like saying that what Hanoch has is just as serious (makes me sick to think about it) as any oncology patient and as potentially life-threatening, but I stayed silent as Hanoch was right beside me and this is not something that I will say in front of him. It is hard enough to come to terms with it myself. Voicing it to anyone would be out of the question, never mind to Hanoch. All I could think to answer was that even the researchers into the disease don't know how to define the disease. I don't know if that is actually true, but it was at least a reply of a kind. I took out my check-book and asked the clerk if, given that the test wouldn't be approved, we could have our check returned and be able to split the payments over a few months. That seemed to do the trick. She picked up the phone to someone, got advice, told one of the other clerks to go in to the doctor and get him to write a letter, and there shouldn't be any problem. Huh?? So what was all that exercise in public humiliation about? The queue had gathered to the side of us and behind us, so quite a number of people heard the whole conversation. Her words made me feel that I had been stabbed through the heart. Of all the things Hanoch has, it has to be Langerhans cell histiocytosis, being treated with IVIG and not chemo, something so rare that even receptionists don't know what category it comes into.
Treatment followed smoothly after that. Hanoch got his favorite nurse. She is not only excellent at her job, she also always relates warmly to the children, Hanoch included. I needed that warmth after the bureaucracy of the reception desk. Hanoch looked extremely pale during the treatment and slept a little, but he felt alright. A girl sitting opposite wasn't feeling good and was sick all over the floor.
Taking stock of the day, we think we've won this round of the battle, but the war's not over. A pyrrhic victory.

Monday, March 27: Treatment went well, but we were there much longer than usual for a Monday. The minute we walked in, the nurse warned us it would take a bit of time to hook Hanoch up. That bit of time was a whole hour. The unit was very busy as there are a lot of sick children - same thing as yesterday, only Monday is sick kids only and not a regular chemo day. Normally, there are two nurses on duty on a Monday, but only one was on the floor for the first couple of hours we were there as the other had to be continuously at someone's side for collection of stem cells. In the end, they had to call in extra nurses because the unit was on overload. The daycare unit will be closed tomorrow for election day and this has put tremendous pressure on the staff, both yesterday and today. So it was one hour of waiting and then three hours of infusion and another quarter of an hour for flushing the vein.
Hanoch also has some kind of virus. He has been coughing since last week and is hoarse with a lot of phlegm. I assume that last month's IVIG has kept it under some sort of control because it's been manageable. He doesn't give it much of a chance. Tomorrow he intends to go canvassing outside one of the polling stations. That's not going to help it too much, but hopefully the IVIG will squash the rest.

Sunday, March 26: Arriving at the hospital for treatment, we discovered that Hanoch's doctor is on ward duty this month. Hanoch was assigned a junior doctor who we saw once before, the last time his doctor was on duty. We had to wait a while to be taken, but the actual consultation was fast. She asked if everything was alright, we mutually agreed on "stable", she examined him briefly, leafed back to the previous treatment orders, copied a new page out, wrote us a new prescription for next time and that was that. Much as Hanoch's doctor often makes my stomach churn, I missed not seeing him. In June of this year we will have been with him for 4 years. We have got used to him and become very dependent on him which may not be such a good thing. It is hard to suddenly be with someone who doesn't know Hanoch. I felt like a lost sheep. I wonder if Hanoch felt this way.
Treatment went smoothly. He started with the infusion machine that we like the best, but at the end of the first bottle, a sign came up that there was a malfunction, so the nurse transferred him to a different machine, (the one that doesn't count properly). The department was extremely busy and very noisy. Tuesday is election day which will be a national holiday, so it seems that they crammed all the Tuesday kids into treatment together with the Sunday kids. There were two televisions blaring stereophonically around me, both on different channels, different conversations and children being read a story, all within earshot, not to mention the distant noise: voices, machines beeping and babies crying. A general hubbub. Day two, tomorrow.

Monday, February 27: Treatment day two. A day of drama, literally, as there was a film crew filming a TV program (fiction). The nurse told us the program is going to be about two doctors, husband and wife, and how busy they are with their medical lives and how they hardly ever get to see each other or their families. Even she had to laugh when she told us this. The day care unit is relatively empty on a Monday because it is not a treatment day. Only children who have to get chemo on that particular day, or children, like Hanoch, who have consecutive days of treatment, or children who are in for IV antibiotics, are in on Mondays (and Wednesdays), so the unit is fairly quiet. The film crew had commandeered one of the areas that has beds in it, and had a little girl actress playing a sick child there. They had brought a special kiddie sheet and blanket instead of the blue hospital covers. The doctor (actor) looked nothing like the doctors I know. First of all, he wore a white coat, and none of the doctors in hem/onc wear any kind of uniform. They all dress informally. Secondly, he had a stethoscope round his neck whereas our honored doctors do not wear anything that distinguishes them as doctors so as not to scare the poor kids any more than necessary.
While Hanoch was getting hooked up, one of the team came over to ask the nurse how they bring paracetamol syrup in a syringe to the children and how they administer it. Coincidentally, Hanoch was just taking his at that moment. The nurse showed off the tray she brings all her equipment in, and Hanoch helped out by correcting the woman who was holding her paracetamol syringe with the piece that the child puts into the mouth! He showed her how it's done by supping his own syringe. Of course, the nurse added that for the very young kids an adult has to do it, and that at Hanoch's age they usually don't have the syrup (implying that he is a spoiled kid with quirks who won't swallow a pill) at which I put her right that Hanoch has the syrup because it is difficult for him to swallow. I don't think she still understood, but I couldn't let it go without at least trying.
Before the flim crew disappeared over to the doctors' rooms to continue filming, one of the women (actress?) brought the little girl over to watch television beside us. Seeing me busy with papers and a pen, she inquired whether I was doing Hanoch's homework. Hanoch kindly informed her that I am a teacher taking advantage of the time grading papers and that he is finished with school. Not letting go, she wondered how this could be. Hanoch patiently explained that he is 19. Instead of leaving it at that, she blurted out "I thought you were about 12 years old". Awkward silence. Ignoramus - she could do with a lesson in tact.
Second piece of drama for the day was a little boy of around 2 who had an allergic reaction to his chemo. He started to get very agitated and was crying a lot. He is usually a very friendly, smiley little boy, so this was unusual for him. The nurse noticed he was coming out in splotches. They were sitting opposite us, got up to walk about a bit, then the next thing, he was in a bed and getting oxygen. He came round and was okay, but his poor mother got a terrible fright.
Hanoch's treatment went well, thank G-d, but these events go deep into the psyche. I am still overwound from the events of the day. At some point I will crash. Then it will hit me. How did we ever get into hem/onc in the first place?

Sunday, February 26: Treatment day went well even if the consultation with the doctor was a bit frustrating. He told us he had summed up all the tests for Dr Grois with no clinical change and an improvement in cognitive functioning. He will wait till the next MRI to decide what the next step will be - i.e. whether to add a non- steroidal anti-inflammatory which he is not keen on doing due to Hanoch's already fairly poor eating.These drugs go for your stomach (his words) and Hanoch doesn't need any more problems in the area of food intake. It also doesn't seem to us that he is convinced that the anti-inflammatory would really help what is going on in the brain. In addition, because Hanoch is doing quite nicely, other than the swallowing which is not a new issue, he does not want to rush into adding another drug. I suggested upping the dose of the IVIG - he said Hanoch's already getting a high enough dose for maintenance level. There is an upcoming conference of the Israeli Pediatric Hematology and Oncology Society, so he may try to pick some brains there. There will also be guest speakers from abroad, but we doubt that they can help shed any light for him. As he was talking, I could sense his frustration as a doctor that there is nothing to go on, no example for him to follow, just to try and avoid a minefield. This makes me uncomfortable and worries me. Leslie complained to me that I am too unemotional with the doctor and just take the punches. Well, he was sitting there too, and didn't speak up, and what did he expect me to do - grab the doctor's leg from under the table and pull it kicking and screaming, demanding an instant LCH cure?
Treatment afterwards went smoothly. Hanoch got his favorite nurse, first poke succeeded in entering the IV needle, and he got the good infusion pump. He looks very tired and pale, but has taken the car, hiccups and all, and gone off to visit his friends - unstoppable as usual. We are the ones left feeling drained. Tomorrow - treatment day 2.

Monday, February 20: Hooray! We collected the IVIG from the pharmacy. The approval hasn't come through yet, but we have an extension for this month, so that's good enough for the time being. Question is, why am I so happy that we are all set for treatment next week? What is there to be happy about that? How histio turns the world upside down!

Thursday, February 16: Pigs do fly! After having called the secretary of the hemo department every day since last Thursday (minus Friday and Saturday when they don't work), she finally called me to tell me the form that we had been waiting for had arrived. To have a secretary call YOU is practically unheard of. A surge of elation is the only way to describe the way I felt at that moment which sounds totally ridiculous over a stupid form. But, however stupid the form, it is so important because without it we can't continue with the IVIG. The previous approval expired today. I handed the form into the insurance this morning, and hope that the approval will come through by next Thursday in time to buy the medication from the pharmacy before the next treatment. The doctor's voice on the other end of the phone in the afternoon was the double surprise of the day. When he calls, I hold my breath. I wasn't expecting anything, although, from past experience, the unexpected can really catch you off guard. I allowed myself to breathe when I heard it was about the form. Like I said, pigs do fly!

Sunday, February 5: Hanoch and Leslie went for the return visit to the gastro nutrition doctor. He looked at the bone age x-ray. There is no more room for growth. He was surprised to hear that the oncologist thought the PEG was a drastic measure. He wondered what was more drastic - a choking attack or the PEG. We hadn't actually thought of it that way, and he is right, the choking is very frightening and extremely dangerous. The doctor claimed that at this stage he would use the PEG mostly for fluid which is where Hanoch's difficulty swallowing is the worst. He wrote a prescription for a thickener and insists that Hanoch uses this with his drinks. The speech pathologist demonstrated the thickener to Hanoch when we met with her, but it was pretty disgusting looking, or maybe she didn't know how to dose the spoons and mix it properly. Surprisingly, Hanoch has gone up in weight since the last visit (does this cancel out my ruminations on Friday?) - the shock of the PEG, but the doctor said that a temporary rise is not enough, Hanoch has to maintain it. He has to come for another visit in 2 months time for monitoring, and the doctor has given us his cellphone number if we need anything. We were quite surprised (pleasantly) about that. I didn't think that we would be going to him again, I thought it was a one-off visit the last time already, and I am not very keen on having yet another doctor follow-up constantly. However, I suppose it is some comfort that we have someone to contact and a solution if the swallowing becomes more problematic, G-d forbid.

Friday, February 3: While dusting the house this morning and mulling over the past week, I remembered that I had asked the doctor a few weeks ago if Hanoch's loss of weight / lack of weight gain could be due to active disease like I believe it was when the mass in the hypothalamus was discovered. The doctor didn't agree it was connected to active disease then, rather it was a random finding, and the reason for it now is due to poor eating because of the swallowing difficulties. Now I am reflecting on the recent results of the MRI where new spots are seen. My hunch is that there is a possible link there.

Thursday, February 2: Unbelievable! Another visit to the hospital and only on account of bureaucracy. Not having heard about the elusive 29G form that should have come back from the hospital committee, and that we have been waiting for to pass on to the insurance, I called the secretary (3rd time following up about it this week) and was totally dismayed to hear that the form has been lost. It was a scenario that had already played out in my head when it had not arrived by Sunday, so I don't know why I was upset by it. It was originally signed by Hanoch and signed and stamped by the doctor on January 6 and should have been sent off the same day. I suspect that the secretary mislaid the document. Usually she takes it to the room where the blood is taken, and the lady who takes the blood sends the various letters down a chute to wherever they go. The form takes about 3 weeks to a month to circulate the various committees and each committee head signs on it. We need this form to pass on to the health insurance special medication committee which then approves us purchasing the batches of IVIG for the monthly treatments. By purchasing I mean that we pay about 50 dollars for a medication that costs thousands.
Luckily, Hanoch was home because he was due to start at a later hour at the ambulance office, so, unwillingly, he called to say he wouldn't be coming in and we took a lightning trip to the hospital so he could sign on a new form. As we are running out of time for the whole process, we had no choice but to rush in today. Hanoch's doctor was not in, so a different doctor kindly agreed to put his name to the form. Someone else was waiting for the secretary after us, so again, we did not see the form actually leave her hands. The doctor hadn't yet signed it, and she has to pass it forward. I was nearly in tears when I heard that the form had got lost, and now I am on tenterhooks that this one reaches its various destinations safely and then returns super-fast.

Tuesday, January 31: My head is in a whirl. There have been so many things going on since Sunday that I haven't had a chance to catch up with my own thoughts.
Treatment started off strangely on Monday. On Sunday, we had brought just enough bottles of IVIG for one treatment, but as we had 2 bottles of 10gr (which is all the company could supply the pharmacy with) and Hanoch only needs 15gr per treatment, the nurse exchanged one of the 10s for two 5s, one for Sunday and one for Monday from the hospital stock in their fridge, and told us not to bring more bottles on Monday. The nurse came over to me and said that even though she had taken the bottles out of the fridge at 8am, they were still very cold and I should warm them up. She gave me the 5gr bottle wrapped in a towel, but I didn't do much good in warming it because my hands were cold to start with. One of the volunteer girls was sitting beside us chatting to us and she offered to try warming the bottle. After she held it for a short time, she looked at it and saw there was some ice floating in it. The IVIG must not be frozen, so I took it over to show the nurse. I envisaged charging home to bring another bottle. Luckily, the nurses had a spare, so I breathed a sigh of relief that I would be able to take my morning tea at leisure instead of galloping back and forward. What is strange about all this is that the volunteer girls are not usually there, certainly not on a Monday and rarely at that point at the beginning of treatment on a Sunday. If it hadn't been for the girl discovering the ice, I know that I would definitely not have detected it because it was hidden by the bubbles and the frostiness of the bottle. It gave me a feeling that Hanoch was being watched over not to get a dud bottle.
Then we were sitting next to a poor young girl of 14 who had pneumonia (not so good to be sitting so close to her!). I got talking to her mother. The girl had been getting ara-C and she was in a bad state. She started with shivers and she was moaning and crying the whole time in a state of extreme restlessness, a high-pitched moaning, very nerve-wracking. Two doctors came to look at her, they took all kinds of tests, stopped the treatment she was getting and gave her a painkiller and 4 different kinds of antiobiotics. The mother told me she has a rare disease (another one!) and she had been getting intrathecal MTX which was okay for her. But then they had to change treatments according to the steps on the protocol. They started with Vincristine and had to discontinue it because it caused bad neurological complications. This is the last leg of the treatment with ara-C and they can't continue with that either because of the reaction it causes. I felt it was another sign for the day - don't go for chemo unless you REALLY have to!!!! Trust that the ONE above is guiding us in making the right decisions at the right time.
Today, Tuesday, was neurology day. We haven't met with the neurologist since the summer of 2003. He talked to Hanoch and went through his test with him. The doctor doesn't see any change since the last meeting and is going to review the scans and neuropsychology report and get back to us. We then went over to hematology to hand in the report of today's consultation and to see what has happened to the form that we need for continuing with the IVIG. Hanoch's doctor said he would follow up about it so that we could leave. We can't purchase more IVIG in the pharmacy until we have a new approval. The form from the ethics committee at the hospital is needed before we can apply to the special committee at the health insurance. We have bottles left over from the last two treatments since they were all 10gr bottles, so we could get away with one more treatment without needing to go to the pharmacy if there is a delay. We could just do with this element of stress removed.

Sunday, January 29: Treatment day once again. Traffic was not bad at all, we got in fairly early, beat the crowds and were first in at the doctor's. I had the meeting all planned out - present the neuroopthalmology report, discuss the recommendations of the gastro-nutritionist's idea of the PEG, ask what has happened to the form that we need signed from the hospital committee to take to our health fund for receiving approval to continue the IVIG and get a new prescription for next month. The first two on the list went smoothly. The doctor's view, like ours, is that the feeding tube is too drastic a measure and urged Hanoch to try and take more of the high calorie drink that we already have in the house. Before I got to the last two items on the list, he presented us with a letter from Dr Grois describing her team's review of the latest MRI. Bad sign - it is rare that he shows us correspondence between them. In their opinion the lesions have increased and there are other undesired changes showing a slight progression. This is contrary to the written report that we received from our own hospital where the neuroradiologist saw no change. Dr Grois favors 2CDA as a drug to be used, our doctor feels this is too toxic. Adding an anti-inflammatory is a possibilty, but which one - I do not want Hanoch to use the cox-2 which is what the doctor suggested. Swallowing pills is out of the question, so we would have to crush them. We have not made any decisions. We are sending the neuropsychology report out to Vienna and Hanoch has an appointment with the neurologist in a couple of days.
This is not the first time that we have gone in for a meeting with the doctor expecting to have certain items on the "agenda" and then for the tables to be turned around. It's like planning your strategic front on the basis of the last war but not taking into account that the battlefield might have changed on the day that you actually set foot on it. We are left with a feeling of uncertainty. Are we doing the right thing by treating with the IVIG? Is the IVIG effective at all now, and if so, then why are there new spots? Why did the radiologist here not see the new spots? What should we do now - add another drug, wait and see, change drugs? Which doctor should we go along with? We respect Dr Grois very highly. She has the most experience in CNS LCH. But we are being treated by the doctor here and we understand his reasoning. Why take a very toxic drug unless absolutely necessary. Is it absolutely necessary? I wish I could know that what we are doing is the best thing. There are many doubts in my head, but IVIG is convenient because it strengthens Hanoch. Since he has been on it, he has had less of everything that goes round and when he has got something, he has got better quickly. Before that, he was always sick and took everything 10 times worse than anyone else. However, our goal is to beat the CNS disease. It has helped, no doubt that it has, but what about now? Leslie thinks that because Hanoch was calm and kept still during the MRI, the quantity and the quality of the pictures is better. Maybe the spots were there before and weren't seen. Maybe the slices of the MRI were in a slightly different place. Maybe the ones that could have shown it were blurred. The questions are all there, there are no definite answers. Tomorrow is another day of treatment.

Monday, January 9: Neuroopthalmology day. Leslie went with Hanoch for this one so, again, this is second-hand reporting. This is one of the easier appointments. The eye drops are probably the most unpleasant part because until their effect wears off, you are dazzled by the strong light outside. Hanoch gets round this by taking his sunglassses with him. It was a different doctor this time. She complained that they hadn't brought previous MRIs with them for comparison with the latest (my fault for not packing them in the bag) and for not bringing a few field of vision test results for comparison with the latest. All the previous ones are actually in the pocket of the file if she would have bothered to look, but Leslie hasn't been to neuro-eyes with Hanoch for a very long time so he wouldn't have remembered to tell her this. There is no change from the last visit, return visit in six months time. Another appointment day ticked off the calender.

Sunday, January 8: Leslie should really be updating this one as he was brave enough to accompany Hanoch to the gastroenterologist specializing in nutrition. However, it was bad enough for him to be assigned this duty without having to write about it as well. Well, sometimes I just have to be at work otherwise I won't have a job left to go to.
Bearing in mind that what I am writing is second-hand, this is what I have learned from their visit: The doctor had been pre-prepared for them coming. Hanoch's oncologist must have briefed him beforehand because he was already ready with recommendations after a short warm-up talk. He also wondered what had taken Hanoch so long to get to him (the onc had suggested this consultation a few weeks back, but for our own sanity and our jobs, we have to space these appointments out a little if they are not urgent).
Hanoch had to describe to the dietician who works with him approximately what he eats in a day. They worked out that he was getting too few calories. Back at the doctor, he related to Hanoch's swallowing difficulties and clearly felt this was the reason for his lowered intake of food. He suggested a thickener for fluids different from the one that the speech pathologist recommended only he couldn't remember the name as it is specially imported from Norway and we have to call him back about it. He wants Hanoch to do a bone age X-ray to see if there is still a growth gap to close. The biggest bombshell of the visit was his suggestion that Hanoch has a PEG feeding tube inserted in order to supplement calories and vitamins. I suppose that's what makes a gastro doctor specializing in nutrition different from a dietician. He sent Leslie and Hanoch out to get full details of the procedure from the nurse. Hanoch is totally against this, and Leslie and I agree that this is a bit drastic at this stage. As long as Hanoch is able to cope, we would prefer that he manage without this because a feeding tube has its own complications. Leslie thinks that the doctor suggested this in order to frighten Hanoch into eating better. We can imagine the oncologist telling the gastro doctor on the phone: "Scare the devil out of him, threaten him with a PEG!" We, therefore, got a jolt and Hanoch dragged Leslie straight to the hospital cafeteria (not that we don't always go straight to the cafeteria whenever we finish our appointments). Leslie, being overweight, was not allowed by Hanoch to eat anything while Hanoch had a tuna salad (not the greatest food for increasing weight).

Thursday, January 5: My spirits are in better shape after today's hospital visit. We met with the psychologist who tested Hanoch for the neurospsychology assessment. He explained the report and the comparison that they did between the last assessment and this one. The results are very positive. Hanoch is still lower than average for some of the tests that he was very low on previously, but in each one, he has improved against himself. The only one which stayed much the same was his motor slowness. We didn't really need the assessment to tell us this because, again, these are things which we can observe for ourselves. But it is good to have everything in writing because that is the way doctors like things - scientific and objective.
The psychologist is an intern studying to be a neuropsychologist (apparently an additional four years of study) and he is particularly interested in Hanoch where the comparison of his skills before treatment and while on treatment is quite startling. We had a talk with him and the neuropsychologist who is in charge of the department. There is an upcoming conference of the Israeli Neurospyschological Society and the psychologist has asked for our permission to present Hanoch's case. Anything that raises awareness of LCH and CNS LCH, gets an instant go-ahead from us. He has promised to send us the paper he presents.
All this took an hour after which we went over to our favorite hematology department where Hanoch had to sign the form that will go round the hospital committee for renewal of the approval to use the IVIG which runs out in February. The form was ready and waiting for him to sign, but then the doctor noticed a mistake, so it had to go back to the secretary to be retyped. Then back to the doctor for his signature and Hanoch's signature again. This, of course, involved another 20 minutes waiting for each. We got into the doctor and had just started to talk about the neuro assessment when he was called away to an emergency with one of the children. The doctor is very happy that the cognitive improvements seem to match the improvement in the MRI scans. The talk can wait, and I was happy to get going. Just as long as Hanoch keeps on the improvement curve, that's what we keep praying for. The hassles of hospital and treatment are worth it for that.