How far we have come.
To the world she became “Mrs. Bieber”.
But to us she was our co-fighter, who many years ago played side by side with Vampboy in the playroom at the hospital, in the radiation waiting room, in the outpatient clinic.
And now she is gone, slipping away after almost 6 years of non-stop treatment.
Tonight I had to sit down with Vampboy and explain she was gone. He knew how sick she was, and in that spirit noted that this moment was somewhat expected. Asked if he was sad, he said “I can’t be sad, she’ll always be in my head.”
And the battle marches on.
Her name is Charlotte O’Shea — and a year ago, she was the smiling girl, sitting with VB in his pirate pool on a beautiful summer day.
She was the first other child we met who had ATRT, shortly after VB was diagnosed. We spent the better part of a year and a half in the battle side by side with her and her family. Then, a week before her treatment was to end, an MRI came back showing she had relapsed. It has been a long journey for Charlotte, her parents, her siblings, her community. I have often thought of them, as we have fought to return to some semblance of the life we had planned, knowing that for them the battle continued without abating.
Charlotte left this earth in the early hours of this morning. She was 6 years old, she loved the color pink, and puppies.
Charlotte’s family are members of our Cure ATRT NOW Team for the Jimmy Fund Walk — anyone wishing to honor Charlotte and her family can make a donation through my walk page, which remains active until the end of the year. Remember, the money we raise goes to research ways to improve treatment for this disease. Or, you can make a donation to:
“Charlotte O’Shea Scholarship Fund”
c/o The Bromfield School
14 Massachusetts Avenue
Harvard, MA 01451
There are reasons why people run screaming from a nuclear explosion or plant meltdown. Aside from the hell-fire that is guaranteed to singe away your clothes and most of what’s underneath, those who escape the blast but remain in the area fall victim to the effects of radiation. Nowhere, of course, do we see this with more horrific clarity than in Springfield:
Of course in lower doses, radiation does some good. In our case it was one of the many amusing interventions thrown at VB’s little head “back in the day”, in between cytotoxic chemotherapy baths that would probably kill an average adult. And now, every 6 months, we travel to Chez Healing for a day of hope and fear, as the MRI machine makes its loud thumpa-thumpa and searches for proof the kitchen sink approach continues to pay off. Today we once again arrived at that happy proof, but not before the unpleasant reminder that — when it comes to cancer — even the lifeboat can poke you in the eye and make you fall overboard.
Long-time readers may recall that last year we had a relapse scare. In the end it turned out not to be the return of the “big bad C”, but rather some damage to brain tissue near VB’s surgical site that most likely happened as a result of – you guessed it — radiation. It is nothing that affects him in any way, but just his brain’s way of saying “you know, I really don’t think a ping-pong sized hole in your son’s head is enough of a visual reminder. Now try this!”
Shoot forward to today. For some reason (actually, probably no reason, as that’s how cancer rolls, y’all) the tissue damage in one spot near where his tumor used to be has grown slightly. In the grand scheme of things the growth of this damage area is small, and its not causing any problems we can see. But there it is, and it causes us to have to wait an extra 4 hours to get the official “No Evidence of Disease” seal of approval while a team of people who use big medical words gather around computer screens and talk about “T2 prolongation” (really, that’s what the spike on the MRI is called).
We are back at Chez Healing tomorrow for follow-up meetings, and on Thursday a gaggle of the nation’s top experts will once again ruminate on my son’s head to ensure consensus that we have no more to worry about than we do normally. For now, however, we sigh that today was a bit more drawn out than we had hoped, but good news nonetheless.
His name is Declan Carmical and, like my son, was diagnosed with ATRT.
Last night he sighed his final breath and left this earth for places unknown, leaving behind a grieving family and community. He was just shy of his 1st birthday.
I add his name to the list that is carved in my spirit — another life lost. Another reminder of how lucky we are to have had our story turn out as it has — even though we cannot guarantee our final chapter is written.
I know too many names. Yet, it is in those names we find the cause that keeps us moving.
In his name, and far too many others — please feel free to give.