The Six Million Dollar Boy

To pick at my decidedly-stale NASCAR reference in the prior post, Andrew is not a stock machine. He is a custom-built model, complete with upgrades.

One of the ironies of cancer treatment, particularly one such as Neuroblastoma, which is dastardly and determined, is that you dread the toxic "blunt-instrument" chemotherapy that is given, as the side-effects, both immediate and enduring, are harsh and arguably cruel. You cannot wait to get through the treatment, to stop poisoning your child. And yet, as you make your way through the various phases, shooting what bullets you have in your gun--chemo, surgery, transplant, radiation--you quickly wish for a reload. The fear, of course, is that as soon as you stop actively fighting the disease, you give it an opening to come back. So, every Neuroblastoma parent finds him or herself at the end of treatment, asking what more can be done, what "add-ons" can be given, to extend treatment.

In Andrew's case, we found ourselves contemplating that issue when he went in for transplant. At that time, after transplant, he would have received radiation and then Accutane, which is used as a maintenance chemotherapy and serves as the transition off of treatment. And that was it. And it made us extremely nervous, even though Andrew's cancer had responded rather well to the treatment so far.

Two things happened:

1. At the outset of his treatment, Andrew had been enrolled in a randomized trial, which was testing an antibody treatment of the disease. We had assumed that he would not be assigned to the antibody arm of the trial. We were incorrect in our assumption and: Ta dah! We got another modality of treatment and five more hospital stays over five months. Hooray! But ugh. Encouragingly, that antibody is now standard care in the treatment of the disease.

2. Andrew's transplant lasted forty days. It was a long stretch in the hospital and when he was finally released, we were so relieved and excited to just make it home and be together. Unfortunately, it was short-lived, as within a week or two of his discharge, Andrew started to...crater. He was re-admitted and stayed another two weeks in the hospital, but what was unnerving about this stay was that the doctors had no good understanding of what was happening or why he was having problems. After countless tests and hypotheses as to what he was dealing with, the doctors determined that he had--somehow--contracted Epstein Barr Virus since his transplant. Epstein Barr Virus (EBV) is present in something like 95% of the population and poses no great threat to anyone, as it is dormant much of the time. Of course, if you have no immune system, like Andrew days after transplant, then it's a bit of a nightmare. Needless to say, he got it under control and we got home (again).

And, as the expression goes: When a door closes, check for an open window (or something like that).... EBV was a gift. We had been researching follow-on treatments for Andrew and had come up with nothing, because almost all "non-standard" Neuroblastoma therapy is clinical trials for relapsed disease. Andrew--thankfully--showed no evidence of disease, but this also meant that there was nothing further on offer for him.

That is, until the EBV showed up. We identified one clinical trial at Texas Children's Cancer Center that was testing a vaccine method of fighting the disease. The requirement to qualify was either: Evidence of disease or diagnosis of...wait for it...EBV. This was because the researchers at Texas Children's were using genetically-modified T-cells that were designed to attack Neuroblastoma cells, but were kept active in the body to do that job through the presence of EBV. Andrew was one of the last subjects to get a spot on that trial and, on the way back from our family vacation in August, 2009, we made a pit stop (yes, more car racing references--I can't seem to help myself!) in Houston, where Andrew got topped off(!) with his own personal vaccine.

This was our final piece of treatment. This is the one that we hope puts him out of reach from the disease for a long, long life.

One of the many bland and vague symptoms of Neuroblastoma is low-grade fever. It is most evident as night sweats. Andrew is a night-sweater. He was as a baby and, worryingly, he still is. However, now, instead of wondering if the Neuroblastoma is conquering his body slowly at night, I prefer to think of his EBV-inspired T-cells, patrolling his body, on the lookout for any threatening activity, cracking down on any cancer cells that try to show up. They're in there, fighting feverishly for him.

So, you're asking yourself: Why this post? Why now? Why so much disease and science and treatment?

Because, it's September. It's Childhood Cancer Awareness Month. And specific stories like this let you know that brilliant and caring scientists, researchers and doctors are working hard to fight this disease. Because it's a disease that fights hard back. They deserve your recognition and your support, so that they can continue coming up with creative, effective and less-crude treatments for our children.

Andrew is, sadly, not bionic (how cool would that be?!), and we don't have the technology (it's a work in progress), but he has been re-built and he is better than he was before.

Spread the word.

Paul