Day Plus 88: Things Have Not Improved

November 04, 2017

Day Plus 88: Things Have Not Improved

Oliver hanging out with his colleagues
Halloween night, after the morphine
pump kicked in.

by Jana

Life right now feels intensely bruta-ful and incredibly short. When Oliver was diagnosed last fall with AML, they found leukemic cells in his central nervous system ("CNS") when they did a lumbar puncture ("LP") along with his bone marrow biopsy. They found them again when he relapsed in April and then the next month when he failed his first round of post-relapse chemo. Because the chemo used to kill the AML in his bone marrow does not pass the blood/brain barrier, his CNS AML was treated with intrathecal chemo (chemo injected directly into spinal fluid). For good measure, he also got extra radiation before his bone marrow transplant this summer.

We assumed that they did a LP with his bone marrow biopsy three weeks ago and that it was negative because they have always done LPs with his bone marrow biopsies and a positive test would have triggered intrathecal chemo. I had been having a persistent feeling that I should actually look at the LP results, so last Friday during rounds I asked for a copy. When they could not find the results, they realized one had not been done. After an impromptu LP in the OR, we were sickened to learn that Oliver has relapsed CNS AML that had been left completely undiagnosed and untreated. This is one of those grenades we were talking about last week. We will not know whether it will close the path to St. Jude's until after a few more bi-weekly intrathecal chemo treatments.

As of now, Oliver is on a dual palliative care/treatment path. It is painful to even think about what he is enduring right now. He is on a morphine pump for mucousitus (caused by the azacitidine and Mylotarg) and generalized discomfort and pain. His fevers are still continuous and often above 104 degrees. He is on TPN (iv nutrients) and vomits most of what little he eats. He is routinely nauseous, always asleep or lethargic, itchy from a GVHD rash, and dealing with several other things that impinge on his quality of life. And, yet, he continues to consistently choose to be kind, keep a good attitude, seek out the good, find fun wherever possible, and have faith in God's boundless love for him.

Apparently concerned by Oliver's persistent brightness, a few people assumed we somehow must not have apprised him of his relapse and the severity of his situation. Although it kills us to not be able to protect him from it, Oliver is all too aware of his reality, particularly as he is the one actually living it. It is just that Oliver doesn't see the wisdom in changing his chosen approach to life, just because things have gotten even more tough.

So, yes, Oliver knows that it will take a miracle for him to live. We all know that our whole family will need many blessings and miracles in the days and weeks ahead regardless of whether that miracle fits in with God's plans.

We are asking anyone who is so inclined, to join in fasting and praying for Oliver this weekend.