#dosomething

7 years ago

Today my newly minted 9 year old started 4th grade.

I never gave up hope – an indefensible hope – that he could stay alive this long. However, experiencing it and hoping it will happen are two very different things.

I know plenty of parents who shared that same hope whose children are dead and for whom ‘back to school’ mania is a piercing reminder of another milestone their child should be experiencing.

Another grade, another school, another friend and another experience that their child will never have as they are “Forever” one age.

We are incredibly fortunate that a perfect storm of tumor biology, cancer parent funding and the extraordinary Dr. Giselle Sholler of the NMTRC created options for our family that have kept my son alive.

I did not write “Saved my son”.

He will never be ‘saved’ or ‘cured’.

This disease – or the side effects from a life time of treatment – will kill him one day.

Hopefully there will be many great days between today and that day and I am thankful for every moment.

The good, the bad and the ugly.

It is hard to tell you how awful this disease is.  How cowardly.

It kills babies and toddlers in excruciatingly painful ways over and over again.

Parents are forced to pick treatment options for their child to endure – quite literally pick your poison – and then watch the staggering effects of this supposed cure ravage their child and then sadly learn at the next scans that this voracious disease has spread.

It is too hard to look at.

But I ask you today – don’t turn your head.

DO SOMETHING.

We fund the NMTRC – along with a lot of other NB parent foundations.

Most of whom have lost their kids but THEY do continue to do something because if not for them then who would fund this?

Who would tell this painful truth?

They continued to fight through their grief and raise funds and now MY SON is alive and can reach milestones like today.

Milestones that their gorgeous and precious children never were able to reach.

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