High highs and low lows today. Sunrises and sunsets. The comforts of home and the realities of leukemia.
For the first time in far too long, my day began on the Ringling Bridge with my dear friend. It felt so good to walk with her again, to watch the sky turn orange over the bay, to laugh. When I came home, Benjamin was awake and comfortable, but Michael had already given him a bath for his tummy pain. He rested for most of the morning while I continued to clean. At midday we enjoyed a beautiful window of time during which Benjamin felt wonderful. His appetite returned and it didn’t hurt him to eat. He planted himself in the kitchen and made his famous turmeric roasted potatoes and a homemade California roll. We also went outside–it was an absolutely gorgeous day–and he rode his new scooter, then we played baseball for a long, long time. He hit a couple of balls all the way to the neighbor’s roof. I could see how good it made him feel to swing the bat again and to hear that perfect thwap when he made contact. I want to remember that sound forever.
In the afternoon, Benjamin’s legs started to hurt. He needed to sit down a lot. I used his moments of quiet to make some phone calls, to clarify our next appointment, and to track all shipments to NIH. I got confirmation that Benjamin’s blood was safely in the lab in Bethesda. This made me at once relieved and frozen with fear. I had to work hard to return to the moment.
Benjamin really wanted to fish at sunset tonight, so that’s what we did. We picked Banyan up from school and grabbed Benji’s buddy and went to our favorite beach. I watched Benjamin find peace as he casted with his daddy, and the sky turned orange again. It was beautiful.
Just before we left for the beach, Benjamin’s spleen started hurting him again. Badly. It hasn’t bothered him in weeks, and he didn’t understand. I haven’t had platelets in so long, why is this happening? He equates spleen pain with platelets. He has heard plenty of people on 7 South say that his transfusions get “eaten up” by his spleen, and I realized today that he took that literally. He was picturing a battle between the two causing him pain. I told him that his marrow was recovering and all of his cells were starting to be produced again, and his spleen was getting crowded. Why doesn’t this happen to normal people? Our conversation was interrupted then. I was grateful. I didn’t want to tell him that it’s the leukemia making him hurt. I didn’t think those words would serve him well.
I expect that Thursday’s lab numbers will show another huge jump in Benjamin’s total white blood cells. I hope that Benjamin’s healthy cells are also proliferating–maybe the jump in platelets is also partly responsible for the pain–but we have to expect the leukemia count to be way up. We need a plan on Thursday. He will need interim therapy very soon.
Benji pushed through his pain until his friend went home, but during his moments of solitude, he had to go deeply inward to find peace, through heat packs and baths, stillness and tears. Once he was comfortably in bed with his daddy and brother I went to the 24 hour pharmacy to fill an emergency prescription for morphine. His pain was definitely increasing and I didn’t want him to be without it, should things escalate in the night.
I insist on living in the moment so much that sometimes when the fear comes, and it is the moment, it overwhelms me. I read today that faith and fear cannot coexist. I’m not sure I believe that. They both live here. I just need the faith to continue to be the stronger of the two.