My son Kabir was four years old when he was diagnosed with Philadelphia chromosome-positive acute lymphoblastic leukemia. He is fourteen now. In between were years of chemotherapy, two relapses, CAR-T immunotherapy, and a bone marrow transplant in 2020, with his younger brother Ayaan as his donor.
He has been in remission for nearly six years. He is also in a wheelchair on the days his legs won’t hold him, and he has spent the last several years living with complications no one could name.
This September, like every September, we will see gold ribbons and hear that children with cancer are survivors. What that month highlights, and what it doesn’t, is what I’d like to bring to light.
This is a letter to his doctors. To all of them, the ones who helped, and the ones who didn’t.
I wonder sometimes when curiosity became optional in medicine. When “I haven’t seen this before” stopped being the beginning of the conversation and became the end of it.
There is a difference between I don’t know and I’m not willing to look.
We’ve had extraordinary doctors. Ones who stayed curious, admitted when they didn’t know, or called someone else.
I won’t pretend I know what it’s like to be in your shoes. But you can’t begin to imagine what it is like to be in ours.
I’ve sat across from doctors while they told me Kabir wouldn’t make it. Like it wasn’t a life-changing declaration.
And surviving isn’t the end. They have to survive what we did to save them. They will never be the same again after chemo and bone marrow transplants.
Survivorship cannot be a few minutes once a year and some boxes to check.
Survivorship is forever.
There has to be something between “we saved your life” and “good luck living it”.
I understand medicine is complicated. What I struggle with is when the parent who keeps asking questions becomes the problem. The parent who just wants to lessen their child’s suffering.
Seeking other opinions should not be an insult. Families should never have to wonder whether speaking up will cost their child care.
Your responsibility as a physician is different from the institution’s. Hospitals have reputations, politics, and lawyers.
You have patients.
For years we walked through children’s hospitals covered in superheroes. Spider-Man on the windows. Capes and masks on the walls. We call the kids superheroes. Maybe we’ve forgotten that the real ones were supposed to be the physicians.
You don’t have to know what is wrong every time. You don’t even have to agree with us.
But stay curious. Say I don’t know. Listen when a parent tells you something isn’t right. Remember that a person is different from an MRN.
Your institution may have a reputation to protect. You have a child’s life to protect.
Often I feel broken by this system. But the reality is that the system is broken.
Kabir finally has a diagnosis from doctors at another institution, and even in another country, who were willing to keep looking. He started treatment about a month ago, after years of uncertainty. It seems to be helping, though the condition is stubborn.
He is back at school most days now, after missing most of last year. I don’t take a single one of those days for granted.
But it took countless hospitals and a family that would not stop asking. Most families don’t have that. They shouldn’t have to.
If this September means anything, let it mean more than ribbons.
Fund the research. Fund the survivorship care that barely exists. And when a parent tells you something isn’t right, believe them the first time.
