Just shy of two weeks. We had a really nice two weeks of outpatient life, our family eating dinner together in the evenings and sleeping under one roof. My husband and I could finally sit in the same room and chat about our days at night, instead of sleeping in separate states. Our boys could play together instead of being separated, seeing each other only for a few minutes at a time. That’s now over again. We’re back in the hospital. Derrick was readmitted for more inpatient treatment yesterday after his labs showed that all his counts are declining. It seems he’s started to reject the stem cell donation. We initially got admitted December 18, 2024. Discharged for the “final” time August 5. Readmitted August 18. So much has happened between December 18 and August 18 and still we aren’t quite out of the woods just yet.
My heart is absolutely shattered. Just, broken. Mostly it’s aching for my kids. We had to explain to Holden why mommy and Derrick didn’t come home last night, after we had told him that we were all now home together (unless of course Derrick got sick again). I didn’t think that ‘unless’ would come so soon.
The path forward is heavy, dark, uncertain, and bound to be extremely difficult. More chemo, radiation, stem cells. It’ll be hard on poor Derrick and his tiny body. The doctor who has led us this far thinks he can do it, but it’ll be hard on him. We cried together while she told me about the plan she and the larger team here are creating. She told me of another little girl in a similar situation who is now 7 years out from her diagnosis and doing well.
These days are dark, but there is still light. I’m keeping the faith that he will pull through. He will be okay. We all will.
