Day 739/111


Benji is sleeping next to me. He is pleasantly exhausted from a long, busy day that went very well.

Benji was a little nervous this morning and his tummy hurt. He didn’t want any breakfast. We gave him some Kytril just before we put the numbing cream on his chest. We all took Banyan to school, then the three of us went over the Skyway, counting osprey and hawks along the way.

The clinic got us right back into an exam room. It has been nearly four months since we’ve had an appointment there, and everything felt like it was running much more smoothly. Benji had a new nurse today. He was skeptical. I liked her immediately. His port access was the quickest and most successful it has been in a long time. His skepticism disappeared.

The nurse had to take 20mL of Benji’s blood today: a CBC, a chemistry panel, a voriconazole trough and the second NIH sample. I triple checked the shipping label and called the coordinator at NIH from the clinic. I will be so relived tomorrow when that blood arrives safely.

Michael kept Benji entertained while we waited for Dr. Metts. This doctor knows Benji well, as he was the attending physician on 7 South many times while we were inpatient. He is familiar with everything Dr. Oshrine is doing on Benji’s behalf and we were happy to see him today. We knew we wouldn’t have answers from NIH, so we really just needed information from Benji’s blood, to learn if he’d need a transfusion or if therapy was necessary yet.

We were all surprised, Dr. Metts included, by Benji’s lab report. Benji’s hemoglobin, platelets, and infection fighting neutrophils have all increased significantly. His marrow is making healthy cells. Concurrently, his leukemia blasts are rising. The percentage is lower than it was Thursday, but the overall number of white cells has risen significantly. The result is a fourfold increase in blasts. The number is still manageable. No  therapy is needed quite yet. Dr. Metts asked us to come back Thursday. Hopefully he will have good news to share from NIH, and we will see what the numbers look like again.

We also talked about Benji’s tummy trouble. Dr. Metts studied Benji’s chemistry and his latest ultrasound. His guess is that Benji’s gut is just wrecked from prolonged antibiotic use. He recommended a watchful waiting approach. I’m hopeful that Thursday’s numbers will continue to show a solid ANC so we can eliminate the antibiotics and antifungal medicines. I can’t wait to reintroduce some serious probiotics and medicinal mushrooms into Benji’s regimen.

By the time Benji was deaccessed his appetite has returned. We found a lovely restaurant overlooking a small airport for private planes. We had so much fun watching them take off and land. Benji’s legs hurt pretty badly as he climbed the stairs to the table. I hope he was just sore from yesterday’s big activity following so much time in a hospital bed. I hope he wasn’t feeling the effects of those increased blasts in his bones.

When we came home, I Fedexed one more consent form to NIH, then went to the grocery store. It felt so good to shop for nutritious food for my family again. I filled the cart with green leafy goodness. I made Benji’s favorite soup for dinner with a loaf of fresh crusty bread. I sprang for fresh flowers too. We couldn’t have them in the hospital. They look so bright and vibrant here.

Benji’s lab numbers may have surprised us this morning, but they make perfect sense, really. His marrow is no longer suppressed by the Inotuzumab. It is able to produce all white cells again, healthy and otherwise. Logic tells me that soon, the blasts will proliferate and crowd the platelets and neutrophils and those good numbers will come down again. Logic says that without treatment, the leukemia would eventually occupy all of Benji’s marrow. We will find a treatment path before that happens. But the numbers gave me a strange sense of hope.

Even if it isn’t realistic, I envisioned those beautiful new healthy cells, Benji’s cells, doing their jobs, doing them well, and defending their ground against all odds. I envisioned them taking over instead, crowding out the leukemia, smothering it, eliminating it. Logic has its place. I know the  science. But hope has its place too. And hope feels so much better.

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