I've said before that I don't do (capital S) Sick kids well. Bothers me pretty deep down.
For obvious reasons it's been tougher to avoid lately. Just to start with, I've got my very own. We've gotten to know a few families pretty well from our interrment at Hopkins. And we've gotten to know a few families, virtually, from the internet community.
When your tumor type has a one in four chance of cure, it's not surprising that some of the kids that you meet don't do well. It's heartbreaking. And terrifying.
Last week a little boy Henry's age relapsed. He had his stem cell transplant within a week of Henry's first. He's been feeling great. Hair coming back in, eating well, very active. But it's back, seven tumors on the spine. They're looking for options, but I don't think they have many.
Yesterday a little girl Henry's age, with anaplasia as Henry has, failed chemotherapy. The tumors have grown even during treatment. She entered the hospital for chemo, and is leaving with hospice. I can feel the ache in her mother's chest in my own, but I know it's just a hint of the real deal.
I want so badly to read success stories, to see kids who have made it. There is one that I follow, entering kindergarten in just one week, over a year out and thriving. He's not yet out of the woods, but is doing well. So I follow these stories, looking for good news, and then the bad news comes. I feel like a rubbernecker on the highway, surveying the gruesome scene for the sobbing parent, the blood on the road.
Sometimes I think I can't look away. I care too much about what happens to these kids.
But today I think I decided I have to. These two relapses have hit me hard. I'm not sleeping well. I'm tearful again. I'm thinking about it whenever my mind isn't actively engaged.
I see some parents embrace the pediatric cancer community. They become activists, fundraisers, lobby congress, speak publicly. That won't be me. As soon as I am able, I will flee. To see the pain, the loss, the disability that these families go through...it rips me open every time. If we are the lucky ones, and Henry makes it through, I don't think I'll be able to look it in the face over and over. If things don't go well, I know I won't. At times that makes me feel weak...that I should give back to this community that has so embraced me and given all it could to my family. But I'm just going to have to find another way to give back.
This isn't the place for me.