About this time last year, I remember a conversation with my sister. She was worried about my nephew–he was feeling nauseated regularly, vomiting daily, and it was not improving. He had been through a battery of tests (he started complaining and having symptoms in November of 2020), but by January of 2022 there still was no clear diagnosis. This wasn’t our first conversation: we had been on the journey with them for nearly a year and a half as he lost weight despite concerted efforts to healthfully “bulk up”. Then he was starting to have regular headaches, issues with double vision, and all of that reinforced her conviction that something was very wrong with her son. She had been sent home from the doctor’s office regularly, but by the end of February he had trouble seeing out of his right eye, which lead my sister to the Nurseline of her insurance, and finally an Ophthalmologist telling them to go to the ER as soon as possible. There they finally diagnosed him as having a medulloblastoma, stage 4, and they had to do immediate surgery to relieve the pressure in his brain.
The next 10 months are a blur…brain surgery, PICU where he stayed for nearly two weeks, and we didn’t know if he would make it, then a medivac to Rady Children’s Hospital in San Diego where a second surgery would more completely remove the tumor, which had spread from the cerebellum to the brain stem. This led to my sister and her family applying to enter St. Jude’s study for medulloblastomas, into which Jamie was accepted, and temporarily relocating to San Diego for his treatment and recovery. He went through two rounds of proton radiation, rehabilitation, and then four rounds of intense chemotherapy.
All of that culminated in a blessed visit with all of us together in Sacramento for the holidays, from which I got home about a week ago. We did our best to make our family traditions happen: big meals around my parents’ table, cuddling on the couch to watch holiday movies, going on some outings together, and just generally trying to find a bit of normalcy in a world that makes so very little sense.
Then a few days ago we got word that the treatment was not successful. We don’t know what comes next yet. The pain of knowing everything my poor nephew has suffered was not successful in getting him to remission is devastating, but I find my most deep and profound feeling is anger at how unfair this situation is. As with all things in my life, I find myself running and reading to process…running out my anger, reading about options for my nephew, ways to provide support and comfort to my family, healthy techniques to address the feelings I have. I, like most engineers I know, intellectualize my life: ‘x’ happened because of ‘y’; therefore the key learning is when ‘y’ occurs again, step back, question assumptions, think through the outcome desired, and attempt to do ‘z’. Sadly, I don’t have a great ‘z’ for this situation. I can be angry at my sister’s healthcare provider for not taking my nephew’s symptoms seriously, not diagnosing him sooner, etc. but none of that makes this situation more bearable. It is an outlet maybe, but not a solution.
There is in fact no solution or reason for why and where this terrible disease strikes. Despite all my general positivity there is no silver lining that I can see, which is not to say that I lack hope, love, and gratitude for all the blessings in my life including this precious time with my nephew, but there is no fairness or reason that I can find, and I am angry. To cope, I find myself meditating upon resilience and acceptance. Acceptance for my anger and my inability to fix things, and resilience to be there for Jamie and my family. To build that resilience, I read, I write, and when I cannot do either any more, I run. The books I have found most comforting of late are:
- Man’s Search for Meaning by Viktor Frankl
- Being Mortal by Atul Gawande
- Option B by Sheryl Sandberg and Adam Grant
- Maybe You Should Talk to Someone by Lori Gottlieb
If you have other recommendations, I’m all ears. I recently read this article on the psychological basis of hope and found this quotation particularly resonant, “According to these theories, hope is related to goals, anticipating obstacles, acceptance, self-worth, social support, and finding meaning in your situation. However, it’s important to note that hope must be rooted in reality, for fear of being false hope. False hope is denial. Hope itself is simply determination.”
I don’t want to have false hope, and walking that line between reality and denial is hard. I find myself determined to believe that there is meaning in this even if I don’t yet understand it. I’m just running, reading, reflecting, and seeking to understand what the greater meaning is.