Day 280

Benji and I slept well. He woke up often but went back to sleep easily once I’d refreshed his water and put a new cold compress on his chest. He walked to the couch very shortly after we woke up for the day. It was a great start.

After Benji was back in bed, we were visited by an All Children’s Ophthalmologist. He was old school and carried a quaint suitcase of tools. He gave Benji an examination and prescribed some steroid drops to protect the mucous membranes in his eyes. He told us to watch for scarring, but that he felt the drops would protect him, and he’d come back to check in. I was grateful to have pushed this consult through.

Sarah arrived this morning for a day visit, and Michael followed shortly after. Benji was visited then by his Nephrologist, who was very pleased with his creatinine level of 1.24–the lowest since we’ve been here. We talked about Benji’s new blood pressure medication, which he expects will need to be taken for a while beyond kidney recovery. While he was here, an osprey was working on a fish on the roof of a nearby building. He used our binoculars to get a better look.

Benji has been drinking so much water. Michael is having fun finding new “craft” waters to make Benji’s mixology more interesting. He even tried water infused with aloe juice, which we know is going to soothe his digestive tract. He didn’t eat again today, but the effort to try is still strong. He’ll get there. His mouth needs to heal.

Michael’s Uncle Dennis was passing through on his way to see his son, and wanted to stop by and give Benji a gift. His timing was perfect. Benji was awake and peaceful. Dennis brought him a stuffed alligator, a companion to a gift he’d given him earlier in the year. He didn’t stay long, respecting Benji’s need to recover. During his visit, with this softie in his hands, through a mouth that hurts so badly, Benji gave a smile of gratitude. It was the first smile we’ve seen in two weeks.

Dr. Grana came in to see Benji during his next nap. I asked her to define the parameters Benji would need to meet in order to end his prophylactic antibiotics. He’ll need to be fever free for over 24 hours, continue to have negative blood cultures, and have an absolute neutrophil count (ANC) that is over 200 and clearly rising. With the weekend (and a different care team) approaching, I wanted to be sure there were no big upcoming decisions left undiscussed. I asked her if Benji should resume the weekend antibiotic he’s taken since diagnosis. It protects him against pneumonia, and we were advised to discontinue it last weekend. Dr. Grana decided to give Benji a substitute, Pentamadine, that will protect him for four weeks and not cause his counts to drop. His dose was renally adjusted to protect his kidneys.

When Benji woke up, we played one round of Uno. That was enough for him, but it was huge for me. He took many naps today, and did not press his pain button once when getting back into bed. Huge.

Benji’s fever, blood pressure, kidney function and severe pain are being managed.  His white blood cell count continues to increase. His skin is molting painfully, and we are keeping it moist and hydrated. His spirit is showing more sparkle every day.

We have been the recipients of so many kindnesses. Tracey and Leslie came to visit today from the Infusion Center. They took time from their workday to check on their patient, their friend; it was a sweet reminder of the good things about this place. We needed that. Benji’s friends continue to send him cards and videos wishing him well. There has been a new surge of fundraising support that was totally unexpected. Kathy and Gana have taken care of Banyan after school so that Michael can spend time here with us. We have everything we need to give Benji the “tincture of time” he needs to heal.

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