The sky at shift change was a thick, foggy red. This is is a strange and confusing time. I am trying to accept all phases of this slow and peaceful transition, but it is so hard to swallow.
We all slept in as late as we could this morning. We woke up needing a quiet Sunday, and our family honored us with that space. We are all learning how to do this together. We feel so well taken care of, so beautifully supported.
Benjamin’s white blood cell count has been lower than 1,000 for several days now. Usually this would be a very optimistic sign that the steroids are working to reduce blasts in his peripheral blood. But we’re being told it is more likely a result of his marrow being so packed that it isn’t producing any cells anymore, healthy or otherwise. Yesterday’s platelet transfusion brought his count to 7,000, so we didn’t transfuse today. His hemoglobin continues to drop without replenishment.
The white blood cell count is one of several misleading improvements. Though he mostly slept, and he used his pain button with regularity, Benjamin hardly used any supplemental oxygen today. This morning he asked to walk to the couch, where he sat and played a game with Banyan. He is completely and totally coherent, no longer speaking in dreamlike phrases. His color has returned. He has eaten several bites of food throughout the day. When our friend and custodian Thelma walked in and saw him, she said, “My heart just overwhelmed me! Thank you Jesus!”
I spoke with our sweet nurse about this disconnect between what we’ve been told to expect and what we can see with our eyes. She said that these waves are not unheard of. Nothing is predictable in death, but she said she remembered an elder nurse once telling her to notice the frequency of clinical changes. If change happens weekly, expect weeks to live. Daily change predicts days to live, hourly change predicts hours. A few days ago, by this rule, I would have expected to say goodbye this weekend. Now, I have no idea.
Michael and I decided to send one more email to Dr. Oshrine. We asked him if it would be prudent to stop the steroids, in the event that Benjamin’s clinical performance continues to improve and we could possibly make it to NIH. As I hit send I realized how foolish and desperate the words sounded. The trial is out of reach now. I know that. Acceptance comes slowly. Also, we believe it’s the steroids that are responsible for Benji feeling so much better; they’ve relieved some pain and pressure from his organs. He can take deeper breaths now. The steroids are certainly responsible for his hunger. If I listen to my instincts, I really don’t want to stop giving them to him. Benjamin needs to feel as comfortable as possible now.
Benjamin’s improved condition also made us consider another possibility more carefully: home. We haven’t made any decisions yet, but we are going to talk to Palliative Care about what a transfer to Hospice might look like. Can he get platelets at home? How often would nurses be there to help us? Where and when would we get our medicines? Who is responsible for what? We are very comfortable here with our 7 South family, and this may be where we stay. But if we are looking at weeks instead of days, we want to know our options. We want to think about where Benjamin would be most comfortable.
One hesitation I have had about going home is that it will precipitate The Conversation with Benjamin. Telling him he will die has been among my biggest fears. A few days ago I didn’t think I would need to talk to him about it at all; that my job was just to keep him comfortable and happy. But I believe we owe it to him to make sure he knows what to expect, and has his questions answered. I know he will let us know when the time is right. It is quite possible he knows already, instinctively. I trust in the guidance that has allowed us to answer all of his hard questions honestly.
My emotions were more grounded today with Benjamin’s improvements, so I spent some time in research. I have researched every phase of his disease and treatment thoroughly, and this should be no exception. Knowledge will help me better guide him through his passage. I joined the bereavement branch of the moms’ group and asked some specific questions. I reached out to two women who have each lost children to cancer and gleaned their wisdom. I researched stages of death specific to leukemia. I feel more prepared now, and more grateful than ever for the sweet moments we have left.
We have no idea what tomorrow will bring. We will make the best decisions we can with the information we have, and we will trust our instincts. We will work on acceptance and sink deep into gratitude. We will surround our boy with love.