Moving the bell curve

Five years ago this week seven year old Max was taken from his family by cancer the same week my own son with cancer had just turned 4.   I had an opportunity to get to know Max’s parents because both of our children where chasing down treatment options for our kids – kids that our own hospitals had told us were out of options.  I was very fortunate to meet them – along with other neuroblastoma parents – who shared our belief about treatment and a passion to do something about it.  Despite the loss of their wonderful child this great family has never wavered in their commitment to continue to fund treatment options so other families could keep their children.

Families like mine.

This week my son turned 9 years old while taking drugs that were paid for by the families of children with cancer.  Max’s Ring of Fire carries on in his honor to raise awareness and along with so many other families fighting – or mourning – are helping to make a difference.  They have literally helped keep my boy alive.

I am keenly aware of the fact that my own child’s story is one of the long tail.

Survival for children who have relapsed neuroblastoma is absolutely abysmal – but in every survival curve someone has to populate the long tail stretching out on the  X axis.

Fortunately for us my child is currently living his life out on the long tail – far beyond where he should statistically be.

However, it is not a miracle or an accident that he is there.

The 113 cycles of tumor directed therapy – the last 5 years and 72 cycles with Dr. Sholler  and paid for by childhood cancer family foundations – is why he is alive.  That treatment load comes with it’s own burden and issues but it is the price of survival.  Today anyway.

If not for all the cancer families supporting my child’s doctor – Dr. Giselle Sholler of Helen DeVos Children’s hospital and the NMTRC – he would not be alive today.   He would not be starting 4th grade next week and he would not have just had a wonderful day with his buddies celebrating his 9th birthday.

However, more needs to be done.

In Vermont yesterday Christopher started hospice on the same day he was to begin 2nd grade. His family has done everything they can for their son – all along raising money to support Dr. Sholler – and still it was not enough.

It is NEVER enough.

It will never be enough until kids like my son are not the exception to the rule.

It will never be enough until curative therapies are developed that are not punitive – that aren’t worse than the disease itself.

It will never be enough until the day a death sentence becomes instead a diagnosis easily addressed with a side effect free pill.

So we’ll all keep doing our part while we try to keep our kids alive – or their memory alive – by funding Dr. Sholler and the NMTRC so that this truly attainable reality comes to fruition.  This change in survival is literally there for the taking and all that stands in the way is funding.

Meanwhile children will continue to suffer, continue to be in pain, continue to relapse and sadly continue to die.  One day this will all change – but one day is too long for the kids dying today – so my question to you is why not today?

Today is a wonderful opportunity – a gift – to be kind, to love others and to truly make a difference.

Please use it.