Day 759/131

Rhythm. A word and an idea I’ve always loved. Tonight, our rhythms feel very off. I’m listening to Benjamin breathe through an oxygen mask while he sleeps. His breaths are short, staccato, labored. He has a fever and his resting heart rate is entirely too high. He got a chest x-ray just before midnight, and… Continue Reading Day 759/131

Day 627

Benjamin’s bone marrow aspirate results are in. His marrow is 56% infected with Pre-B Cell Acute Lymphoblastic Leukemia. Of course this isn’t good news, but it is a bit of relief to know it’s a relapse, and not a different (and more difficult to treat) form of leukemia. With this information, Dr. Grana presented the… Continue Reading Day 627

Day 424

Benjamin had a follow-up visit with cardiology today. It was an appointment I scheduled months ago, as part of our arrangement to check his suspected patent ductus arteriosus (PDA) annually, and also as a matter of routine following the frontline months. Several of the chemotherapy medicines (doxorubicin most notoriously) can be cardiotoxic. It was time… Continue Reading Day 424