Day 70 – May 27, 2022

9:00 pm: “Why did I get cancer?” Lindsey tearfully shared with me Harvey’s question for his mom yesterday. Explaining that we don’t know why hardly feels acceptable. It’s now 70 days since his world forever changed. His next round of cancer treatment was scheduled to begin today, but his body remains too weak and immunocompromised to continue. He’ll be reassessed next week to determine if he can begin treatment again. As Hattie and Henry headed happily down the block to opening day of the neighborhood pool with Lindsey, I sat with Harvey and asked myself the same question. “Why did he get cancer?” The pool, like so many other places, will remain void of Harvey’s excitement and energy for some time. We are witnessing our youngest miss out on being a kid while not being able to tell him why this is happening. It’s devastating. To be honest, it’s another dimension of devastating on top of our twins’ autism. It has us living day to day, waiting for better days ahead.

Next week, Harvey has an appointment to be fitted for ankle foot orthotics (AFOs). He has noticeable muscle/tendon deterioration in his legs, ankles, and feet, and AFOs will support him while he works to regain strength through physical therapy. His next treatment, when able to begin, will include vincristine, a chemotherapy that has known side-effects of nerve damage and a variety of muscle/tendon issues. We anticipate his stability and muscle issues to continue, but hopefully not get worse. At last check, he had no reflex reaction in his legs. We can only hope that his nerve damage will not be permanent, or at least minimal and not painful.

All that said, he remains out of the hospital and not ill. That’s a lot to be thankful for at this stage of cancer treatment! Next Tuesday, Harvey will have labs drawn at home to see if his immune system has started to recover. Once his ANC rises to at least .750, he’ll begin the next round of chemotherapy. We’ll continue to post new information as it becomes available. Things have settled down for the moment and we’ll have intermittent updates every few days. Less frequent posts means all is well (as can be). 🙂 Thank you for all your love and support during these first 70 days of this journey that we never anticipated. We don’t have many answers, but we certainly have learned a lot.