Blood Work because of low platelets

We arrived at the hospital at about mid day.

Abdullah got his blood work done; the platelets were in the 30s today, i.e. the count were improving. His wbc count was over 10 and hemoglobin was in the 90s. All was good. No platelet tranfusion required.

He was now off gcsf , needed no more pokes. The nurse tried to heprenize his CVL the yellow one worked but the blue refused to flush. They were going to send us of for an xray to ensure that the CVL was in the right place, when I requested the nurse to push and pull a little harder. Abdullah raised his hands and started singing and his line started working. Lucky us no need to take him for the xray. Though I realized that if the home care nurse would be unable to flush we would have to go back to the hospital to do that x ray and potentially have to spend another day at the hospital.

Abdullah bought a R/C helecopter from the toy stalls in the lobby and we went back home.

We were at the hospital for 7 hours, and the entire trip was slightly over 8 hours. We left the house at 11:00 am and got back home at 7:30 pm.

MIBG Scan

My son had his MIBG scan today. Thank God that it showed no more neuroblastoma in the child. We got the result 3 hours after the scan. I guess writing an all clear report is easier than writing a report hilighiting issues.

I was going to arrive at the hospital in the afternoon, post scan procedure. This was a stressful test for us the parents as it would most likely show the neuroblastoma peresent still in the child's body.

I arrived @ the hospital at 14:00, and discovered that my wife and child were still with the nuclear medicine team doing the MIBG. It had been 2 hours. In my subconscious I thought there was something wrong.

My son came out of the scanning room after about 30 mins. He was really excited to see me. Well atleast he was done with 1 more test. Now it was just the bone marrow aspirate, bone marrow biopsy and CVL line change procedure remaining before the high dose chemo on the 14th/15th April, 2008.

My wife really wanted to go home, as she had been in hospital for over 2 weeks now so she negotiated to reschedule the bone marrow tests and cvl procedure to be done next week instead of tomorrow. The doctors willingly agreed as the childs platelets were less than 20. This would give him enough time to start producing enough platelets.

Abdullah got discharged and was understandably very excited to go back home. However we had go back to the hospital the next day to check his platelets again.

Radiation Therapy Meeting

Today we had a meeting with the radiation doctors at Princess Margret Hospital close to the SickKids facility.

The meeting was to discuss the outline of Abdullah's radiation plan based on all the information so far. The doctors are planning 12 radiations to the left side of his belly and spine. The area potentially to be covered on the belly would be approximately 15cmx15cm.

The produre would require a cast created specifically for the contours of Abdullah, so that the radiations can be applied accurately and would be x-ray guided.

Abdullah would be awake during the produre, but alone for the period of time when the radiations are applied. The procedure length would be approximately 30 mins.

It would happen consectively every day at Princess Margret Hospital for 5 days in the 1st week post transplant, 5 days in the 2nd week and 2 days the following week.

The doctors explained the short term and long term side effects of the radiation.

Short term side effects;

• Nausea and vomiting
• Loss of appetite

Long term side effects;

• Left side would be shorter than right. Slightly but visible.
• His height would be about 2 inches shorter than his actual height, because of the radiation on his spine.
• Atleast half of his left kidney will lose function as it would radiated. The function will automatically be compensated by the other kidney.
• ~10% cases develop secondary tumors.

I signed the consent form today which would allow this procedure on my child post transplant. It is such a contradiction trying to cure by poisoning, that too trying it with a child who doesn't understand or know that certain things in his future are being written off to preserve his today. I hope he will understand our obligations to preserve his life under these circumstances.

Urine test result (VMA slightly elevated)

We received the child's urine test results today. Dr Baruchel informed my wife that they were normal and nothing to worry about, even though the childs VMA (vanillyl-mandelic acid) level was 7.8 (initially 120 when diagnosed) where the normal range is supposed to be between 0 - 5. His HVA (homovanillic acid ) level was 9 where the normal rage is 0 - 15.

VMA and HVA are metabolates of neuroblastoma cells and are used as an indicator of the disease. We were hoping that this indicator exhibited perfect results as a child who goes for high dose chemotherapy and stem cell transplant while in remission has a higher probability of cure and not relapsing. I am now researching VMA and its significance. Already came accorss some interesting material, check my neuroblastoma-info blog.

Possible solution to high probability relapse issue, even after complete remission

This is something I was aware of but not explicitly. The below extract clearly hilights the issue and potential solution to the problem;

In spite of the satisfactory frequency of clinical response to first-line therapy in neuroblastoma (NB), complete eradication of NB cells is rarely achieved. As a consequence, the majority of patients with advanced stage NB undergo relapse, which is often resistant to conventional treatment and rapidly overwhelming. Thus, after induction of the apparent remission, new therapeutic strategies are needed to completely eradicate the small number of surviving NB cells and to prevent relapse. We explored the potential of different doses of the anti-GD2 monoclonal antibody (mAb) 14G2a in an experimental metastatic model where a limited number of HTLA-230 human NB cells are injected i.v. into nude mice, leading to extensive metastases and death of animals within 7–8 weeks. Treatment with 14G2a mAb (1–4 mg/kg cumulative dose given as five i.v. daily administrations) dramatically reduced the metastatic spread of NB cells and prolonged the long-term survival of treated mice in a dose-dependent manner. Neither macrophages nor NK cells appeared to contribute to the protective effect of antibody treatment in vivo, suggesting either an involvement of granulocytes or a complement-mediated cytotoxicity towards NB cells. Whatever the effecting mechanism(s) involved, these results strongly support the clinical use of anti-GD2 mAbs after first-line induction regimens.

Reference: Anti-GD2 monoclonal antibody immunotherapy: a promising strategy in the prevention of neuroblastoma relapse

Chemotherapy Cycle 6

This chemo session is same as cycle 1,2,4.
The following drugs are used; cyclophosphamide ?? mg/kg, doxorubicin ?? mg/m(2), and vincristine ?? mg/kg (CAV)

Started on Thursday, 13th March 2008 and finished on 16th March 2008

Tumor resection surgery

We were very worried about the delays that took place. The surgery was originally scheduled for Wednesday 20th February 2008. It was postponed the first time as he had a low platelet count. The procedure was rescheduled for 27th February 2008. The surgeon was very concerned about us making it to the hospital @ 6.30am due to bad winter snow storms, that he requested us to stay the night at the Delta Chelsea hotel across the hospital. In the morning we were all ready to go for the procedure, when 2 emergency cases came in at the same time. The surgeon anticipated the emergency procedure to last about 4 hours, unfortunately it took longer and they had to reschedule our child's procedure again to the coming Monday.

My son finally had tumor resection surgery today 3rd March 2008. The surgeon, Dr Girstle, claims to have successfully removed my sons primary tumor which was slightly larger than an egg. It took him 2 hours to remove the primary tumor but 4 hours to removed the infected lymph nodes. There were a total of 5 specimens (1 tumor and 4 lymph node specimens) removed from within the child.

We got to see our son after about 8.5 hours, the sight of so many more tubes into our child made our hearts sink even more. He now had a new epidural tube for pain control, a chest tube to drain fluids, 2 intravenous lines (one in each hand) and a catheter in his penis to help drain his pee . There was a large L shaped tape on his abdomen, covering the stitches on the surgical incision.

The most traumatic thing for the child was the catheter sticking to his penis. He demanded that it be removed immediately and fell asleep again.