Day 714/86

Benjamin’s fever took a while to come down last night. He was burning up. When it finally came down we were able to catch a few hours of sleep. His port culture remains negative. Everyone agreed that the fever was a result of the Inotuzumab. I heard that the other child who received a dose… Continue Reading Day 714/86

Day 706/78

Benjamin has received his first dose of Inotuzumab. Its administration went smoothly, and he tolerated it well. We both slept as long as we could this morning. We tried to do schoolwork, but Benji didn’t feel well when he woke up, and I didn’t push it. He was sore at his catheter site and in… Continue Reading Day 706/78

Day 705/77

I am ending another long day with gratitude. There have been moments of exhaustion and moments of fear, but overwhelmingly, the things that could go well, did go well. On the eve of a brand new treatment for Benjamin, this is the wave we need to be riding. Benji spiked a small fever at midnight… Continue Reading Day 705/77

Day 702/74

Benjamin had another great day today. We deeply missed the other half of our foursome, but we enjoyed our hospital family, and soaked up a bit of Saturday sunshine in the process. Michael and Banyan stayed in Sarasota today. Banyan woke up with swollen lymph nodes and a slight cough. No fever, no cold, but… Continue Reading Day 702/74

Day 701/73

Look at the boy in front of you.  Today I took this advice. This morning, when I heard the nurses come in for shift change, I didn’t jump up to see the numbers. I stayed in bed and snuggled up to my sleeping boy instead. By the time I read the lab report, Benji had… Continue Reading Day 701/73

Day 700/72

This morning’s labs were frankly terrifying. Benji’s white cell count and neutrophil count doubled again, and his blasts went up to 73%. His absolute blast cell count is so high. The leukemia is making it really difficult for his marrow to create healthy cells. His platelets disappeared again after yesterday’s transfusion. And his absolute lymphocyte… Continue Reading Day 700/72