When we first found out that Maya had neuroblastoma, the Doctor (Paul Gibson) who provided us with the initial consultation did a quite a good job. One thing that stood out for me was how polished his delivery was. I recall thinking how messed up it is for someone to be that polished in delivering such devastating news. Part of the flair in delivery also included such bold statements like, “intention for complete recovery”. I am sure he did not say these exact words, but in spirit, that was the gist of his delivery. Rather romantic, really. And we drank the coolaid.

What did we know about cancer?

Then slowly we come to understand the fact from … a certain bravado. The truth of the matter is, no one understands anything of significance about cancer. If resection or radiation won’t do the job, things become very grim, very quickly. Immunotherapy is one thing that’s potentially available for those who are in the grim reality.

So, what is immunotherapy?  Simply put, it’s an attempt to make your immune system to recognize cancer as a foreign object so the body can fight it like an infection.

The facts:

  • buys you roughly 20% additional survival rate across 2 years, from those who do not go through this therapy
  • buys you roughly 10% additional survival rate across 5 years compared against those who do not get it.

Some will sucumb to the disease even if it seem to have helped initially.  It seems like in reality, one more out of ten child will make it to that golden five year mark.  Fifth year seems to the the point where survival rate goes up dramatically.  That is to say, if you make to to the five year mark, once you have cleared the disease, the chances are high that you’ll live longer… into your thirthies, on average.  Yup, this is the stuff that’s the biggest news in neuroblastoma community.


  • It’s very painful.  Your body is eating some of it’s own nerve cells.
  • Body becomes hyper sensitive to its environment. In extreme cases, it can cause anaphylaxis.
  • May cause edema.  In some cases, edema is severe enough that the patient must be admitted to ICU.  Basically, fluids leak from everywhere.  If severe enough, of course, it’s fatal.
  • And then there is the accutane, or 13 cisretinoic acid.  It’s part of the protocol. It’s the acne medicine that’s been linked to suicidal tendencies, severe birth defects in children, inflamatory bown disease and the pharma company, roche, pulled it off the market.  It also has the tendency to mature cancerous cells.
  • It’s not known which is the efficacious component; the ch14.18 + IL2 or 13 cisretinoic acid or the combination of them.

I have watched children getting immunotherapy.  If nothing else, watching the child’s heart rate climb to 225 bpm is scarey.  For an adult, it’s an unsustainable number.  Your heart will fail at this speed.

So why do it?  What else can we do? This point is the crux of our dilema.  What can we do?  What if…

Well, we are in the midst of the application process.  We had another biopsy done. More holes in Maya’s pelvis.  And on Monday, we’ll find out whether they have neuroblastoma sample and whethere any were also found in the bone marrow.

Again, we’re back to this uncomfortable situation.  What do we do?  Yes, we do want the additional percentage points.  But the harshness is something else altogether.

In the interim, we’ve also reached out to Dr. G. Sholler to possibly engage in the DFMO or TPI 287 study.   If we do not qualify for the immunotherapy, we try the DFMO study.  If we do qualify, I can’t say, I am crazy about the idea of going through the therapy. But, at all times, we need a wildcard in our back pocket.  Where will we be, once we run out?

And here we are once again, what… are … we…to… do?