Day 578


I slept extremely soundly last night and woke up feeling ready to take action. Benjamin woke up with a tender tummy and got straight into the bathtub. Fortunately his discomfort dissipated quickly. I’ve added some digestive issues to the list of things to discuss with his oncology team tomorrow. The sores on his lips don’t look like the mouth sores he got from Methotrexate in the past–they look more influenced by sun exposure–but I know it’s possible, and I wonder if his GI tract is being similarly¬†affected.

We got some work done at home, then met with a sweet friend to cut more paper for rainbow stars. Her daughter has a rare blood disorder that required treatment much like a leukemia patient; a move to a specialty children’s hospital, and a bone marrow transplant. It was wonderful to see her, now entering 8th grade, sweet and sparkly as ever. Her mama told me that her hair looked just like Benji’s when it came back in. She too was in the third grade.

Tomorrow we return to All Children’s. Benji will be accessed and have his blood drawn and analyzed. I’m not sure if the genetic testing will move forward tomorrow or not. We’ll have our consultation, then Benji will get his monthly dose of Vincristine, and we’ll get new prescriptions for Methotrexate, Prednisone and Septra.If Benji’s ANC is still trending high, I expect his Methotrexate dose will increase. If it does, he’ll be at the maximum dosage for all of his medicines.

Tonight, we crossed the Skyway for a much better reason. We had a Rays game to catch!


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