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JUMP TO: 2016 2017

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Sunday, June 18, 2017: This is the first time I have been at the hospital for months and months, not since before my first chemo treatment in September. I'm glad I went because we said goodbye to Prof K. who is retiring at the end of the month. I felt like I was going to burst out crying, but I held myself back. We have been with him for 15 years and he knows Hanoch well. I am anxious of the continuation. He suggested that we go over to Dr I. K. whom he said is thorough. He commended her. I don't know if we get to choose. I hope so. He said he will talk to her. I hope he remembers. We got in at 9.15, at the doctor's after 10 and only hooked up at midday. The head nurse Yae. came to put in the venflon and nurse A. attended to Hanoch afterwards. They had brand new infusion pumps, so there were representatives from the company who were helping the nurses with troubleshooting. One of the representatives came over to Hanoch and started talking to him. Turns out he was a paramedic in MDA when Hanoch was a teenage volunteer. Hanoch pleaded with him to teach him how to work the infusion pump (he knew the tricks of the old one), but he wouldn't give in. It was such a long and exhausting day that today only Leslie has gone with Hanoch and I have stayed home to recuperate and get on with the housey jobs. It was just as well since Hanoch was hooked up late again and they only got home at 5 o'clock. Poor Hanoch is cough, cough, coughing. He started with a sore throat and cold last week and he has the hacking cough that is his hallmark when he gets a cold.

Sunday, April 23, 2017: Leslie went with Hanoch again even though I have finished the main part of my treatment and even have some hair! I went back to work last week and didn't think it was appropriate to take another day off, especially since I will still need sick leave for my treatments still to come. Also, a Sunday is a long and exhausting day for Hanoch's treatment and I didn't think I was up to it. It was a good decision considering that they left the car park at 4 in the afternoon and there was a huge traffic jam from the 14th floor. As a result, it took an hour to get out of the car park and another hour to get home, that since 8 o'clock in the morning. Prof K. is again talking of expanding the time between treatments, from 2 to 3 months. I can't see that that would be effective for IVIG. He was talking about seeing a neurologist, but then he has said that numerous times over the past few months, while I was still accompanying, so I'll be surprised if anything comes of that. And, go find a neurologist who knows anything about ND LCH. He will wait to see the result of the MRI first. Over at the nurses' unit it was I. who put in the venflon. She had to choose her spot carefully as Hanoch's arms are black and blue and pricked in quite a few places after the failed attempts at the venflon in the MRI. It was nurse L. whom I don't know, who attended to Hanoch. At the end, head nurse Y. got the permission of a doctor to leave the venflon in through Monday whereas the last couple of times this was strictly forbidden. They keep changing the rules to suit themselves. Monday it was nurse A. In the middle, nurse Y thought the venflon wasn't in place, so I. had to renew it. Ouch ouch and ouch again.

Sunday, April 20, 2017: MRI. It's been a whole year plus one month since Hanoch did an MRI thanks to all my medical issues. The appointment was for 9.30 at night and not bad at all, he was taken at 10.10 and finished at 10.45. World record for an MRI. It was a brand new machine and Hanoch felt much better with it. He even had earphones and felt his head more comfortable and generally less claustrophobic. The doctor that put the venflon couldn't do it properly and pricked him a few times. Ouch.

Sunday, February 26, 2017: Leslie went with Hanoch again. This is getting to sound boring. I am now on to radiation (number 9, but I digress). I am only the reporter. Leslie and Hanoch reported a warm welcome from nurse YL who is now the head nurse and much nicer (so far anyway!) than IL was. IL barely looked at us when we came in and was mostly grumpy. Nurse Ye. attended to Hanoch, and got the venflon in on the first poke. Prof. K. took blood tests because he said that something was elevated last time and he wanted to check it again. I don't think I had even looked at the results last time and just as well because I'd have probably freaked out and worried and it was Dr N too. Just checked the results now and everything looks good. Thank G-d a million times. I take nothing for granted. Oh and by the way, glad to hear that Prof K approves of Assuta's radiotherapy unit. Makes me feel a lot better, Back to the subject. Judging by the video clips, it was a noisy day. When is Sunday not a noisy day? More noisy than usual being Rosh Chodesh Adar and the national service girls had the place decorated like a circus and were dancing around and making lot of ruckus.
Monday it was nurse D. and then nurse Y. They are both nice nurses. After treatment, Hanoch and Leslie drove over to me to at Assuta and we all went home together. Thank you for that!!!

Sunday, January 1, 2017: Leslie went with Hanoch again. I am starting on week 7 of herceptin and week 2 of taxotere (did 2 taxols at the beginning and then stopped, but I digress). I report this as told to me. They got to the hospital at a good time, it being Chanukah and the roads quiet. However, they had an hour wait to get to the clerk at the reception to discover our insurance coverage needs to be renewed. Leslie put down a deposit. A symbolic 1 shekel. Prof. K. wasn't there so they got Dr. N.who knows Hanoch although not well. He wondered why Hanoch was still on IVIG and should he be stopping it now. Instead of Hanoch and Leslie going full steam ahead and advocating for Hanoch and the IVIG, they were silent, not remembering the time when we couldn't get the Omrigam for 3 months and Hanoch's swallowing took a turn for the worse. This was corroborated at that time by the ear, nose and throat specialist, who after checking , said the problem was neurological. He will talk to Prof K. (doubt he will remember that, why would he with so many patients under his belt.) He wrote down 6 hours for the infusion and double the acamol but the nurse managed to sort that out.
At the nurses' unit, it seems the ancien regime is over. The head nurse I. is no longer and it is now nurse Yael. Leslie got a shock as he was warmly welcomed by her on entry. Was it the person standing behind him, next to him that she was talking to??? When she heard that Hanoch was still at reception with the bureaucratic part, she told him to summon him immediately and the admin would get to them after. Nurse Yaffa is now second-in-charge. Ra ra Yaffa, we like Yaffa. Yael put the venflon in, unsuccessfully the first time. Lian, a new nurse, looked after Hanoch. There was a problem with the pole and the infusion pump and it had to be changed not longer after it started. A succession of nurses attended, Yael, Lian, Yaffa and Iris all tried their hand with the pump although it was Lian who was crowned to do the looking after. Because they had started so late, they finished very late and with the traffic jams, they didn't get home till 6 in the evening. They had left at 8 in the morning. A long and exhausting day! Monday was nurse Yaffa.


Sunday, November 13, 2016: Leslie went with Hanoch again since I am on round 4 of adriamycin and cytoxan, so not the best place for me to be with them. They got nurse D. They left at 8 in the morning and got back at 5. An exhausting day. Monday was nurse I although the lady who takes the blood put the venflon in. She failed at the first attempt because the vein blew and Leslie said Hanoch was very pale. In the evening, he had a fever. Don't know if it is a reaction to the IVIG or he has picked up something. There are a lot of people with colds and viruses, even the kid sitting next to him had a fever and one of the moms there didn't feel well. Not a good environment to be in.

Sunday, November 6, 2016: After a week of phone calls to Maccabi to extend the approval of the IVIG temporarily because Prof K. was on holiday, and their refusal, Prof K. is finally back, attended to the matter immediately and the hospital faxed us the 29G and his letter to them. At the same time, Hanoch got a message on his phone that the approval has been extended temporarily. Couldn't they have said that last week and saved aggravation? Better late than never, I suppose. All the phone calls and bureaucracy together with my own treatment has left me exhausted. At least we are where we need to be administratively speaking!

Sunday, September 18, 2016: Leslie went with Hanoch on Sunday. I went to school so as not to miss another day, considering I need to take off on Wednesday for Leslie's RFA (esophagus) and my upcoming treatment when I will be off a lot. It was nurse M. and she told them how she had got into trouble for leaving the venflon in overnight last time, contrary to orders. Well, she shouldn't do what's against the rules, even if we've done it that way for years. Now they're not allowed to do it. Hanoch told Prof K. what treatment I'm in for - difficult treatment was his comment.
Monday it was Nurse Y. and nurse I. who took care of Hanoch. Nurse Y. got the venflon in right away and all proceeded smoothly.

Sunday, July 31, 2016: I can barely remember anything about this treatment session. Our computer was broken for weeks and I didn't get to update. Besides which Hanoch's treatment was overshadowed by my own upcoming surgery for my mastectomy two days after on August 3. I told Prof. K. about it. He said "What - are you bored?" , asked me some relevant questions and wished me well.
Nurse M. attended to Hanoch and on Monday, Leslie went with Hanoch because I had to go to meet with the nurse and the anesthetist in a different hospital.

Sunday, May 29, 2016: Sunday was the waiting game -waiting in the traffic jam, waiting an hour at reception, waiting for the doctor. It was a l-o-n-g day. We set out at 8 sharp and got home at 5.30, worn out.
Most of the time with the doctor is taken up with him trying to figure out the computer and how to get the treatment orders to come out the way he wants them. The report got lost when the first screen froze on him and he must have forgotten to save it as it didn't appear online later on. Last time he mentioned doing an evaluation with the neurologist since Hanoch hasn't been for a few years. He reported him as being humorous and knowledgeable with a lot of sense. However, he still didn't actually give us a referral. I could press the issue, but I am saturated with medical appointments and just can't be bothered. He is on semi-pension now and it's like he's just treading water. I'm okay with that as such. Hopefully, that is all we ever need to do.
Nurse M. put in the venflon, Nurse Ye. looked after him and and nurse M. took over for the flushing and unhooking. One of the big (literally) basketball stars came on a visit and all the kids and Hanoch got their pictures taken with him and he signed autographs. I, of course, didn't have a clue who he was.
Monday, it was nurse B. who looked after Hanoch. She asked if he would accept the hydrocortisone pre-med in a push. That shows how long she hasn't attended to him because he hasn't had the hydro for a very long time.

Sunday, April 3, 2016: Sunday was a very unusual treatment day as Sundays go. It went and relatively fast and smooth too. On arrival we got straight to the receptionist, then straight in to the doctor. The MRI is stable, than G-d. I could not help but ask if the radiologist reads it according to the ND LCH protocol or just the regular brain protocol. Prof K. got me to write down the question so he would remember to raise it at the next meeting. (Wink wink) He has been telling us there is a new neurologist for some time and he is going to tell him about Hanoch. He thinks Hanoch should pay him a visit and get an updated status report since it has been a few years since he last saw Dr. B who retired.
Then it was on to the nurses' unit and nurse Ye. spotted us and quickly took the IVIG bottles off us and started to get the infusion pump organized. Hanoch was hooked up in record time on first poke. She always manages to spill blood onto his trousers and this time was no exception. She kindly provided the peroxide and Hanoch rubbed off the evidence. Every time Hanoch gets the IVIG, the nurse goes by a different protocol. They must have tightened things up a bit because she started it at a very slow rate of 25 for 10 minutes, then 52 for 10 minutes and then rest of time till half an hour on 60 and then up to 80. She also measured blood pressure twice and nurse J., a new nurse, measured it again at the end of the treatment. Attentive and very very unusual!
Monday and nurse Y., her always pleasant and smiling self, hooked Hanoch up right away. The rate was started slowly like yesterday and one hour and 15 minutes into treatment, Ch, the auxiliary came and took blood pressure a second time! Nurse G. unhooked Hanoch at the end with a magic spray that removed the plaster from the hairs without Hanoch blinking.
Thank G-d for another round over and done with.

Saturday night, March 19, 2016: MRI. The appointment was for 10 (at night). Hanoch was taken at midnight. Nothing out of the usual there. That's it!

Sunday, February 7, 2016: Sunday was the marathon of marathons. Despite the heavy traffic, we got in reasonably early. The receptionist said that Hanoch's doctor was there but not taking patients, but maybe he would see us. So she gave us a number and we sat outside his office. All the doctors were in a meeting. They all emerged at 10 o clock. When he saw us sitting there, he told us he couldn't take Hanoch because his computer was locked and he was going to be out and about. So I went back to the receptionist and A. gave us another doctor. We went to sit outside his office, but he wasn't there. We waited and waited. When he eventually came, he took someone else first. By this time we had been there for 2 hours and got nowhere. Seeing another doctor with her office door open, I asked if she would take Hanoch just to write the treatment orders. Luckily, she agreed. She was looking at her computer and she saw the words "when to stop?" I was a bit surprised since we hadn't talked about it last time and the doctor hadn't written anything on his report that we see. This is the big debate and it does worry me. She had to fill out a new form for our health insurance and because of this question she was going to write for 6 months duration. I told her that H. has been on IVIG for 12 years, so she changed it to another year! All this talk makes me very nervous because, really, just how long should he stay on treatment? Forever? In the end, Hanoch was hooked up only at 12 o' clock, 3 hours after we had arrived. This time the nurse was M. We could see she was very nervous doing the venflon. She thought I. who takes the blood would do it, but Hanoch said he had confidence in her. She managed fine TG on the first poke, I think thanks to Hanoch's encouraging words. It was the first time M. has looked after H. (I think!) and she is very pleasant. All went well but it was a long day and we didnít get home till 5.30.
Then on Monday I had to go over to the doctor again to get another treatment order even though the doctor on Sunday had written for 2 days. This time Prof K.'s computer was working and he did it for me. He brought up the subject of how long to go on treating. He explained it's not like an enzyme is missing from the body and you need to replace it forever. Should Hanoch still get IVIG when he's 40, 50 etc. Well, I understand that and I also often wonder about this. What about the time when we couldn't get the product for 3 months and Hanoch's swallowing went downhill. We went to the ENT and he determined it was a neurological problem as the swallowing mechanism was fine. So what should we do? The doc pointed out that the MRIs have improved which points to stopping treatment. Again, we have left the matter unresolved and I got a prescription for the next time. Prof K. will be working only one day a week from now on as he is semi-retired. I feel his heart is not in it the way he used to be. One time I suggested he write Dr Henter in Sweden to find out how his long term patient is doing, but he did not take me up on it.
It was nurse A. together with nurse G. and Y. who looked after Hanoch on Monday. It was a quiet day and went well TG.

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