Curing the incurable

September 19th 2006.

My son had just turned two years old a few weeks earlier and we had a meeting scheduled at the Jimmy Fund Clinic on this date to review his most recent scans. It had been about 18 months since he was diagnosed with stage IV neuroblastoma as an infant and after his cancer came back he tried and failed his initial salvage chemotherapy. This meeting was to discuss the results of the next therapy he tried.

It was an unusually grueling and intense 5 rounds of high dose chemotherapy that had made for a very difficult and challenging summer for our then 1 year old boy.

When I first felt an enlarged lymph node in my infants neck I immediately knew something was horribly wrong and when I walked into this meeting room, filled with a lot of strangers wearing long white coats and even longer faces, I once again immediately new the news was not going to be good. The head of the childhood cancer program at Dana Farber then gave us the news: our son was incurable.

He had exhausted all known curative therapies for his disease and stopping treatment was an option for us to consider.

Neuroblastoma is the most common cancer in infants — the most common solid tumor in childhood outside of the brain — and while it accounts for only 7% of all childhood cancers it accounts for 15% of all childhood cancer deaths.

Never heard the word ‘neuroblastoma’ before?

Neither had I despite the fact that it is one of the top ten leading causes of every death in the US for kids between 1 and 14 years of age.

And so there we sat in a roomful of strangers suddenly drowning in this new reality.

Isn’t there something we can do? Anything?

Are we just supposed to take our only child home and watch as his cancer erupts and have his only medical intervention be pain relief?

The grief of losing a child is crippling enough and I had to wonder could I survive if that grief was served with a helping of guilt and regret for not trying?

Do I want my regret to instead come from the fact that I did nothing or because we tried something that only made his suffering and death worse?

This was a critical fork in the road and the first time I became fully aware that it was 100% our choice to make.

With a decade of hindsight I have come to the realization that all you can do at these critical junctures is to go ahead to a theoretical day where you child is gone and you look back at this point in time. And when looking at your choices which of those would leave you with the least amount of regret. It is at this point that you will know what the right choice is for you to make at this time.

You can never escape the grief of losing your child — but you can at least try to mitigate the guilt.

And so that is how we moved forward.

He was my only child and other than the poison we had consented to give him and the tumors inside of his chest he was perfect and I wanted to give him every chance to live. And so we started on a journey to find — and eventually fund — treatment options that did not yet exist in the hope that we could keep him alive.

And here we are — ten years out from that meeting where we were told that we should take our son home to die because there was nothing we could do to save him.

It has been a very difficult ten years filled with crippling stress, hard work, fear and worry.

It has been an amazing ten years filled with love, happiness, smiles, siblings and LIFE.

An otherwise indefensible hope was realized and not only did we finally find a treatment to help our child but we have seen a dramatic shift in survival for this disease.

I have a 12 year old son who is a 7th grade student, who plays hockey and lacrosse and who has two amazing younger sisters.

I have a 12 year old son who is now 3.5 years off of all tumor directed therapy.

I have a 12 year old son because a group of people decided that every kid with relapsed neuroblastoma dying was not good enough. That we could do better.

And so after a decade of fundraising, consortium building and doing all we can to empower an incredible team of doctors I am incredibly proud to stand hand in hand with other neuroblastoma families across the country. We have created a national non profit that not only saved my son’s life but that is dramatically improving survival for every child with neuroblastoma.

What started out with an indefensible hope of curing the incurable has turned into a reality ten years later.

And we are just getting started.

Learn how you can help at BeatNb.org