Change and then Some

With this issue Simon was having with some of the medicine we really had to pray and think hard about what to do.

Do we try to eliminate something from his treatment plan because of side effects?
Or do we keep going on it for that small chance it could prevent relapse?

In researching more about the drug and the clinical trials that were done we discovered:
1. the original trial was a very small number of participants. So small in fact that the small percentage of the kids doing better on it was not enough to have really approved it for administration.

2. the drug was added to the neuroblastoma protocol in the 1990’s. During that time the only other treatments were chemotherapy and radiation. They have since added stem cell transplants and antibody therapy.

3. with the additional therapies added no research has been done on how well this drug works in addition to these. Yet 20 years later it’s still included

4. I spoke with what is considered the #1 neuroblastoma doctor in the country, if not the world, on the phone. He said when considering to take any treatment away they really research what is in the best interest of the child’s health…. EXCEPT with this drug because they don’t see a marked difference. So if someone doesn’t want to do it they say ok and carry on.

So today we met with a specific member of the bone marrow team that I requested. I trust him and he really listens to us.
He listened to my thoughts and agreed with my concerns.
But he hadn’t heard that people were questioning the data.
He went out for a minute to speak with one of the main oncologists.
Came back out and said that the team did agree– Simon’s side effects weren’t worth it for a drug that hasn’t been tested in so long. So he is off it!

That means that his original last day of treatment (besides end of treatment tests/scans) of July 7th is now May 26th! Which is kinda scary to be done sooner… But we know Simon has done great, will continue to do great, and has many things left to do in this life!

We are so grateful for the promptings, prayers, and fasting to come to this decision.
We’ve really felt blessed to have opportunities in this country to seek other opinions, find people who want the best for you, and to have a long Heavenly Father looking out for us.


We are back inpatient on the 19th for round 3/5 for antibody/immunotherapy.



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