Day 664/36


Today was the day Michael and I set aside to take care of business. We divided and conquered. He worked from home and only went to one meeting, helping me take care of vehicles, dogs, voting, and most importantly, Benjamin’s dental care.

Benji can’t have any cavities going into his bone marrow transplant. There is also one baby molar we’ve been concerned about, as it’s been hanging on for quite some time, harboring potentially dangerous bacteria. So today we got x-rays and a dental examination. Benjamin does have one small cavity that will have to be filled between immunotherapy rounds. His baby tooth needs to come out sooner than later, but it won’t need any help from the dentist. Just a little of Benji’s never ending bravery.

The time between immunotherapy rounds is filling up with lots of procedures that need to happen before transplant. In addition to the cavity filling, Benji’s colonoscopy (and hopefully polypectomy) will happen during that time period. Dr. Oshrine communicated with the GI doctor who has been recommended for the job. He feels he can remove the polyps relatively easily and do so at All Children’s, which is great. Also, we got a message today from one of the wonderful nurses on 7 South. She was thinking ahead and asked us if we’d consider having Benjamin’s Broviac placed before his immunotherapy rounds. It would save him the discomfort of a peripheral line, and of reaccessing his port each week during the 28 day stay. Since Benji is going in for his bone marrow aspirate tomorrow, it is probably too late to do this before the first round, but between rounds in December makes great sense to me. We’ll be asking about this at tomorrow’s visit.

Michael was with Benji in the late afternoon so that I could run errands in public, germy places. The timing worked out perfectly so that I could pick Banyan up from school. It’s been a long time since I was able to do that. We were quite happy to see each other.

The day wasn’t all business. At the end of the day, Gana kindly offered to come over and take some family pictures for us. From there we took a new kite that Michael and Benji found and our frisbee and football and went to the Celery Fields. The sunset and the weather were absolutely gorgeous.

Tomorrow we will drop Banyan off at school and head back up to All Children’s. We will have a clinic appointment first to check counts and make sure Benji is ready for his bone marrow aspirate. His ANC and platelet count both need to meet their parameters. If all is well, we will go to the Special Procedures Unit in the early afternoon. He will be put under anesthesia and they will take a sample of bone marrow from his hip for the fifth time. Then, we wait for the results.

No one expects this bone marrow aspirate to reveal remission. It’s unrealistic. But we are hoping for a low enough number to begin Blinatumomab as planned next week. That would certainly bring us a bit of peace.

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