Day Plus 81: The Bare Necessities

by Jana

On Sunday morning Oliver was sitting in the living room. He was listening, on a loop, to Jungle Books's Bare Necessities and I could hear him boisterously singing along from the kitchen. I turned the corner and saw him happily swaying and bobbing along with the music while crocheting the giant blanket he is making for our family. It was Oliver just being Oliver.

Yesterday morning, after a late night readmit to Primary Children's, Oliver was sitting in his hospital bed crocheting the same blanket. Clearly exhausted, slightly nauseous, but smiling and happily chatting with Mitch, his nurse.

This morning I am sitting on the couch that I slept on last night, watching Oliver as he sleeps. His plans for today include making oven-baked potato logs with Kristin the occupational therapist, several hours of napping and finishing the family blanket.

His plans also include getting transfused with his third of seven planned injections of low dose azacitidine chemo to help beat down his rapidly growing leukemia. Next week he will be infused with Mylotarg, the same chemo he was on late last spring, just at a significantly reduced dose. Because Oliver was amazingly able to get completely off the steroids with only negligible GVHD remerging so far, a few new treatment doors are open. But, as far as we know, the only potentially curative option is for Oliver to undergo a second bone marrow transplant ("BMT") at St. Jude Children's Research Hospital as part of a clinical trial. Right now, his cancer needs to settle down and his body needs more time to recover from his recent BMT in order for him to be a candidate. We are trying to keep him alive long enough and well enough (in terms of infections, organ and bone marrow functioning, and leukemia control) to be able to enroll in the trial in a few months. We are also working with palliative care, knowing that the path to St Jude's is covered with grenades and can become permanently blocked at any given time.

We are filled with gratitude for each day we get to share with Oliver. We are trying our hardest just to focus on the real essentials of life and to cast our worries and our strife on someone who has freely and gracefully taken them on for us already. 

Oliver crocheting in the hallway while waiting for an exam room to open up. 
 He loved spending the week being the Walmart greeter of the clinic.
Oliver's little sisters loved the oven-baked potato logs and
cheese sauce he made for them. 
His sister's blanket was crocheted mostly at clinic
When he was done crocheting his sister's blankets (one for her and one for her monkey)
he laid them out on her bed to surprise her when she came home.

Hanging out with his people at Primary Children's last night.

Sent from my iPhone

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