We’re 20 days into round 4. As previously mentioned, we expect this to be a longer round. Noah is doing okay. His ANC is zero as expected. He’s already gotten a couple platelet transfusions and will almost surely get a red blood cell transfusion tonight as his hemoglobin is right at the transfusion threshold of 7. There’s really no sign of count recovery, but also no real complications at this point. He dealt with some stomach pains for a number of days post-chemo, but that seems to have settled down and he’s eating and drinking mostly fine.
Today I’d like to write some thoughts not about Noah, but a child to whom he will always be connected, and from “Noah’s perspective” (Noah does not know about this situation—there will be a time and place for that.).
The Boy in the Room Next Door
There’s a boy in the room next door.
I don’t know him, but I know him.
He spends days and days inside his room.
I spend days and days inside my room.We can’t leave; too many germs.
Something went wrong with our blood.
It’s not fighting the germs.
It’s not clotting.
It’s not carrying oxygen.Why did this happen?
There’s no rhyme; there’s no reason.
It’s not fair.
This shouldn’t be our fight, but we fight.
We are brave.
Family, friends, doctors, nurses; we are so, so loved.The chemo takes our hair; it’s just hair.
We’re sick, tired, nauseous, feverish.
Our counts get low and then zero.
We get transfusions.
We wait.
And wait.
And wait.
Our counts recover.
Back home for a bit.
And back for another round. And another.And then he’s in remission.
There is joy; there is hope.
But then he is not in remission.
The disease comes back.
It’s worse.
He fights and fights and fights, but the disease does not relent.
More precious moments, but not enough. He deserves more time.
It’s not fair.There was a boy in the room next door.
I don’t see him, but I see him.
He fought.
He loved.
He is loved.
He is remembered.There’s a girl in the room next door.
I don’t know her, but I know her.
We fight for our lives.
We fight for the boy.
Joseph Stark passed away peacefully this morning. He shared an anteroom with Noah last round and had also been battling AML. Mayumi and his mother, Callie, supported each other in recent weeks as Joseph was bravely fighting for his life. Beyond the immeasurable emotional toll, this battle has put immense financial strain on Joseph’s family. I’d like to ask that you take a moment to visit his GoFundMe page, read his story, see his pictures, and think about his family.