Day 637/9


Today was much calmer than yesterday. Benjamin needed the slower pace. His spirits were high but his body was tired. We honored that, and had a restful, restorative day.

Benjamin’s cells continue to perform as expected. His marrow is being suppressed. His ANC, hemoglobin and white blood cell production are on a slow and steady decline. His platelets take the most drastic dips; this morning they’d halved from yesterday’s transfusion boost. The phosphorous is declining slowly. Everything is happening as it should be, treatment-wise.

We focused on schoolwork for much of the day, with plenty of breaks in between. The GI team came in this morning to bring me photographs of Benji’s colon polyps. One of the doctors believed that at least two of the polyps may be able to be removed by snares, which would be ideal. But we will still seek the counsel of the Moffitt gastroenterologist.

Benji started his Dasatanib today. He has shown no side effects. He did, however, begin developing mouth sores this morning. They can either be attributed to Vincristine or Daunorubicin. As soon as I saw the telltale streak in his mouth, I emailed Dr. Oshrine. I wanted to give Benji glutamine and I needed to be sure it was safe to do with his new roadmap.

Dr. Oshrine approved the glutamine but asked that I run it through the inpatient team so that they could write it as a “nonformulary medication” and the pharmacy could label it. Protocol. Before I sent it to the pharmacists I gave Benji a dose, and I’m glad I did. The pharmacist came back late tonight saying it couldn’t be verified because it was powder, and I’d need to run it by the team in rounds tomorrow. I hope this doesn’t slow things down further. These mouth sores may happen regardless, but glutamine can definitely help. If I have to, I will give it to him on the down low.

Kathy came up for a sweet visit this afternoon, and Michael and Banyan followed. By the time the night nurse came in to give Benji his medicine, he was exhausted but content, ready for a bath and a good night’s sleep.

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