Day 468

Day 468

For the first time since long term maintenance began, Benjamin went to school on the day following a lumbar puncture. I had a feeling he would. He woke up easily and calmly without complaint. He got ready for school without question. The lower dose of propofol yesterday was clutch, I think.

By the time I picked the boys up from school, Benji’s face had begun to assume its steroid look: red, warm, puffy cheeks, eyes with flashes of wild in them. I was so grateful for an afternoon with nothing on the agenda. No hospital, no guitar lesson, no football, baseball or basketball practice. I wanted Benji to get some healthy exercise, and Banyan was so happy to see him. He was a supreme big brother today. We didn’t even unlock the front door when we got home. We just started playing. Basketball first, then street baseball. We had so much fun.  

I spoke to two mothers today who have children with leukemia. One of them confided in me this morning that she’s getting a divorce. This happens so frequently in the childhood cancer community and it makes me so sad. This mama has a new baby also, and a third child as well. I feel so grateful for the strength of my marriage and I don’t for one second take that for granted. The other mother I spoke to was Cody’s mom. It always feels so good to hear her voice. We are there for each other in a unique and lifelong kind of way. I told her about Benjamin’s chemo increases, and as she has done for a year now, she shined light on our path. After Cody’s chemo was all increased this last month, his absolute neutrophil count (ANC) plummeted. He’s experiencing more side effects from the medicine as well. I feel more prepared for this possibility now.

Benji’s body was very ready for bed tonight. He even asked to stop our bedtime story midway so that he could fall asleep in silence. He closed his eyes, and I saw the dark triangles beneath them that appear the day after his lumbar punctures. He was asleep in seconds. I sat on his bed for a few minutes longer, filling my heart with the peace of his breathing.

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