Timeline

Sunday, November 1 : Treatment number 67, number 62 of the maintenance treatment.

Sunday, October 4 : Treatment number 66, number 61 of the maintenance treatment.

Sunday, August 30 : Treatment number 65, number 60 of the maintenance treatment.

Sunday, August 9 : Second BERA test.

Sunday, August 2 : Treatment number 64, number 59 of the maintenance treatment.

Wednesday, July 29 : BERA

Sunday, July 19 : MRI

Thursday, July 16 : Neurology appointment.

Tuesday, July 14 : Neuro-opthalmology appointment.

Sunday, July 5 : Treatment number 63, number 58 of the maintenance treatment.

Sunday, June 7 : Treatment number 62, number 57 of the maintenance treatment.

Sunday, May 10 : Treatment number 61, number 56 of the maintenance treatment.

Sunday, April 12: Treatment number 60, number 55 of the maintenance treatment.

Sunday, March 15: Treatment number 59, number 54 of the maintenance treatment.

Sunday, February 15: Treatment number 58, number 53 of the maintenance treatment.

Wednesday, January 21: MRI

Sunday, January 18: Treatment number 57, number 52 of the maintenance treatment.

Sunday, December 21: Treatment number 56, number 51 of the maintenance treatment.

Sunday, November 23: Treatment number 55, number 50 of the maintenance treatment.

Sunday, October 26: Treatment number 54, number 49 of the maintenance treatment.

Sunday, September 21: Treatment number 53, number 48 of the maintenance treatment.

Sunday, August 24: Treatment number 52, number 47 of the maintenance treatment.

Monday, August 11: Neuroopthalmology appointment

Wednesday, August 6: MRI

Sunday, July 27: Treatment number 51, number 46 of the maintenance treatment.

Wednesday, July 16: Neurology appointment.

Tuesday, July 1: Treatment number 50, number 45 of the maintenance treatment.

Sunday, June 1: Treatment number 49, number 44 of the maintenance treatment.

Sunday, May 4: Treatment number 48, number 43 of the maintenance treatment.

Sunday, April 6: Treatment number 47, number 42 of the maintenance treatment.

Sunday, March 9: Treatment number 46, number 41 of the maintenance treatment.

Sunday, February 10: Treatment number 45, number 40 of the maintenance treatment.

Monday, February 4: Neuroopthalmology appointment

Saturday, January 26: MRI

Sunday, January 13: Treatment number 44, number 39 of the maintenance treatment.

Sunday, December 16: Treatment number 43, number 38 of the maintenance treatment.

Sunday, November 18: Treatment number 42, number 37 of the maintenance treatment.

Sunday, October 21: Treatment number 41, number 36 of the maintenance treatment.

Sunday, September 23: Treatment number 40, number 35 of the maintenance treatment.

Sunday, September 9: BERA test.

Tuesday, September 4: Neurology appointment.

Thursday, August 23: Bad choking attack.

Sunday, August 19: Treatment number 39, number 34 of the maintenance treatment.

Saturday, August 18: HAPPY BIRTHDAY 21!!!

Monday, July 30: Neuroopthalmology appointment.

Sunday, July 22: Treatment number 38, number 33 of the maintenance treatment.

Monday, July 17: MRI

Sunday, June 24: Treatment number 37, number 32 of the maintenance treatment.

Tuesday, June 5: Neurology appointment.

Sunday, May 27: Treatment number 36, number 31 of the maintenance treatment.

Sunday, April 29: Treatment number 35, number 30 of the maintenance treatment.

Wednesday, April 4: Treatment number 34, number 29 of the maintenance treatment.

Sunday, March 4: Treatment number 33, number 28 of the maintenance treatment.

Sunday, February 4: Treatment number 32, number 27 of the maintenance treatment.

Monday, January 22: Neuroopthalmology appointment

Sunday, January 14: MRI

Sunday, January 7: Treatment number 32, number 27 of the maintenance treatment.

Sunday, December 10: Treatment number 31, number 26 of the maintenance treatment.

Sunday, November 12: Treatment number 30, number 25 of the maintenance treatment.

Tuesday, October 31: Neurology appointment.

Sunday, October 15: Treatment number 29, number 24 of the maintenance treatment.

Sunday, September 17: Treatment number 28, number 23 of the maintenance treatment.

Sunday, August 20: Treatment number 27, number 22 of the maintenance treatment.

Friday, August 18: HAPPY BIRTHDAY 20!!!

Monday, July 24: Neuroopthalmology appointment.

Sunday, July 16: Treatment number 26, number 21 of the maintenance treatment.

Monday, July 10: MRI

Sunday, June 18: Treatment number 25, number 20 of the maintenance treatment.

Sunday, June 4: Fourth visit to gastroenterologist.

Sunday, May 21: Treatment number 24, number 19 of the maintenance treatment.

Sunday, April 30: Third visit to gastroenterologist

Sunday, April 23: Treatment number 23, number 18 of the maintenance treatment.

Sunday, March 26: Treatment number 22, number 17 of the 2-day treatments.

Sunday, February 26: Treatment number 21, number 16 of the 2-day treatments.

Sunday, February 5: Second visit to gastroenterologist specializing in clinical nutrition.

Tuesday, January 31: Consultation with the neurologist.

Sunday, January 29: Treatment number 20, number 15 of the 2-day treatments.

Monday, January 9: Neuroopthalmology appointment.

Sunday, January 8: First visit to gastroenterologist specializing in clinical nutrition.

Sunday, December 25: Treatment number 19, number 14 of the 2-day treatments.

Sunday, December 18: MRI day.

Tuesday, December 13: Second videofluoroscopy.

Wednesday, December 7: Second consultation with speech pathologist about swallowing difficulties.

Tuesday, November 27: Second neuropsychology assessment. (Update only lasting about 2 hours).

Sunday, November 27: Treatment number 18, number 13 of the 2-day treatments.

Sunday, October 30: Treatment number 17, number 12 of the 2-day treatments.

Sunday, September 18: Treatment number 16, number of 11 of the 2-day treatments.

Thursday, September 8: Hanoch passed his driving test.

Tuesday, August 23: Treatment number 15, number 10 of the 2-day treatments.

Thursday, August 18: We celebrated Hanoch's birthday by taking a short 3 day trip to the ancient holy town of Tzfat (Safed).

HAPPY BIRTHDAY 19!!!

Saturday, July 30: Hanoch choked badly again on water that he was drinking.

Tuesday, July 26: Treatment number 14, number 9 of the 2-day treatments.

Sunday, July 10: Hanoch had his first major choking episode since starting treatment. It happened while he was at the ambulance office where he works.

Monday, July 4: Visited the neuroopthalmologist. There is no change, and he has to return in another 6 months.

Tuesday, June 28: Just finished treatment number 13, or number 8 of the 2-day treatments. Everything went well.

Friday, June 24: Happy Anniversary! Can that be the right thing to say after one whole year of treatment and three years from the beginning of the relapse odyssey?

Thursday, June 9: Hanoch just failed his driving test for the 5th time.

Tuesday, May 31: The doctor called to say that the neuroradiologist looked at the MRI and everything is stable. Thank G-d. Hanoch will be continuing on the current treatment schedule.
Leslie took Hanoch to the hospital today especially to meet the national basketball coach and two of the players.

Sunday, May 29:The blood test result came back from Germany. They did not find any antibodies, but there are some elevated interleukin(s?) which points to him having active disease (according to the experts).

Sunday, May 22: MRI day! This time we tried to help Hanoch through by giving him Valium beforehand. However, we had given it to him a bit too early. He was sleepy in the morning whereas in the afternoon the drowsiness had worn off. The MRI was scheduled for 4 o'clock. By the time he was called in, he was very nervous. When he came face to face with the technician, it was mutual shock. "OH NO! NOT YOU AGAIN!"

Tuesday, May 3: Returned to the hospital to get a chicken pox vaccination after a child was found to have the virus on Sunday.

Sunday, May 1: Sunday's and Monday's treatment days.

Tuesday, April 12: Hanoch gives a blood sample to be taken to Germany.

Thursday, April 7: Good news from the health insurance. The approval for the IVIG has been extended for another 6 months.

Sunday, April 3: Treatment number 11, or number 6 of the 2-day treatments.

Tuesday, March 8: Treatment number 10, or number 5 of the 2-day treatments. Hanoch complained his leg fell asleep while out walking the weekend before treatment.

Tuesday, February 8: Treatment number 9, or 4th treatment of the shortened version. Just in case the fever last time was caused by the gammaglobulins, the doctor ordered hydrocortisone before the IG was infused, instead of leaving it as SOS on the order form as he usually did.
Hanoch donated a small vial of blood for sending off to Germany for further research.

Thursday, January 20: The BERA or BAER test, otherwise known as brain-stem evoked potentials. I think the lady doing the test was a speech pathologist. She hooked a few electrodes to Hanoch's head, one on each ear lobe, and stuck ear plugs in his ears. The electrodes are linked to the computer which reads the brainwaves when clicks are delivered to the ears.
The doctor received a letter from the lab in Germany which tested Hanoch's blood in June for anti-neuronal antibodies. We had already heard that none of these antibodies were found. However, they continued their search and found TNF alpha antibodies. The doctor said TNF alpha antibodies can be found with a raised ESR level and can signify a number of things, not necessarily to do with LCH. But it could be important for LCH if it is a sign that the LCH is active.

Tuesday, January 11: Treatment 8, (or 3rd) is over for this month. Hanoch has had a fever since last night. So far it is only a fever and nothing else. Half the country is down with the flu and various viruses.

Monday, December 13: Treatment course number 7, number 2 of reduced schedule.
Monday, December 6: Hanoch went for weighing-in at the dietician. He has gone up 1.8 kilos since last month. We have noticed that he has been eating better lately.

Monday, November 15: Treatment number 6, number 1 of the maintenance schedule. The improvement over the previous MRIs is that the lesions do not show up "colored" after the gadolinium. The doctor is now of the opinion that the full dosage (2gr per kilo of weight) of the IVIG is too much continue with on the current schedule, and the MRI improvement allows us to go down to a maintenance level. The dose has been reduced to 30mg (0.8gr per kilo of weight) per month which we do over 2 days.
Wednesday, November 10: Just got GREAT news from the doctor. The MRI shows "definite improvement." The doctor is considering reducing the treatment dosage and lengthening the intervals between treatments.
Sunday, November 7: Hanoch did the MRI this afternoon. It took 45 minutes, and he was even more fidgety after the gadolinium was injected.

Sunday, October 17: Treatment number 5.

Tuesday, September 21: Partial results of the blood/endocrinology tests. The endo tests were fine, but Hanoch is deficient in Vitamin B12.

Sunday, September 19: Treatment number 4.

Thursday, September 9: Reunion with the endocrinologist who first discovered the recurrence of the LCH in the hypothalamus two years ago.
Thursday, September 2: Short trip to the hospital to fill in a new form called "29 G" which will have to go round a number of bigwig hospital doctors (ethics committee) before we can apply for an extension of the IVIG from our health fund.

Wednesday, August 18: HAPPY BIRTHDAY 18!!
Hooked up to an IV is a novel way to spend your 18th birthday

Sunday, August 15: First day of the third course of treatment.

July 18-22: The second round of treatment on Sunday 18.
July 12: All of last week saw Hanoch with a cold which cleared up very quickly. Is this thanks to the antibodies?
July 1: Hanoch seems to have had more swallowing issues this week.

June 20-24: Sunday June 20 the first of the 5 days of the treatment. We arrived at the hospital with a cooler loaded with the IVIG and ice packs Each daily infusion lasts three hours with another few minutes at the end to flush the vein. Total dosage of IVIG is 2 gr per kilo of body weight.
June 15: Maccabi health fund approved the IVIG last week (until October) and today we collected the bottles from their pharmacy. The treatment schedule is five consecutive days every month.
June 14: Seventh visit to neuro-opthalmology. We are happy that there is no change and everything remains stable.
June 1: Hanoch donates 40cc of his blood to be sent over to Ulm in Germany for antibody testing. Apart from that, he has been feeling his right leg and his right eye getting tired on and off. His leg "goes to sleep" for a few seconds and then "comes to" again.

May: Maccabi health fund agrees to fund use of the treatment for one month only. As the treatment is intended for over a longer period of time, approval for one month is meaningless. We have had to reapply with another request from Hanoch's oncologist.

March: MRI shows no significant change in lesions in the pons. After many discussions, the decision is taken to start treatment with intravenous immunoglobulin (IVIG). As the drug is not indicated for LCH, we have to apply for approval to use it, then to apply to the health fund to consent to pay for it due to its expense. Bureaucracy reigns supreme!

February: Interview to discuss report of neuropsychology test.

August 18:HAPPY BIRTHDAY 17!!

August: Videofluoroscope for testing swallowing. Sixth visit to neuro-opthalmology.
July: MRI shows slight worsening of lesions. Visit to speech pathologist.
May: First visit to neurologist. Fifth visit to neuro-opthalmology
April: Endocrinology blood tests. Everything comes out well.
March: MRI shows slight improvement of brain lesions.
January: Fourth visit to neuro-opthalmology.

August 18: HAPPY BIRTHDAY 16!!

July: First lumbar puncture followed by PET scan. No conclusive results. First visit to neuro-opthalmology as lesion is causing thickening of the optic chiasm. Started treatment with Vinblastine and Prednisone. Five weeks into treatment, a high fever starts. Unexplained fever continues and lasts 6 weeks in total.
June: MRI of brain. Lesion on hypothalamus found. Skeletal survey and bone scan.
April: Gastroenterologist consulted again about swallowing difficulties and fear of choking. (A lot of clearing of the throat and "gulping" accompanies Hanoch's eating and drinking). Endoscopy showed no apparent reason for the swallowing problems. Gastro suggests a psychologist may be of help.
March: Visit to gastroenterology to do endoscopy for suspect celiac disease due to raised IgA level. No disease found.

15 months - Loose tooth and discharging gums. Surgery to take biopsy. Skeletal survey, bone scan and liver and CT scan. Diagnosis of eosinophilic granuloma, jaw bone.

7 months - Very high white cell count (Lymphocytosis), sent to hematologist to check slides, found nothing. Lasted a few weeks and disappeared.

2 months - Breath-holding spells. (You are changing the baby's diaper while he is screaming when suddenly he stops breathing and turns blue.)

6 weeks - Surgery for Pyloric Stenosis.

4 weeks - Starts projectile vomiting. (You know this is serious when there are no baby clothes left in the cupboards, the laundry basket is full and there is no room to hang any clothes on the line.)

Hanoch Smith born: August 18, 1986