While the oncology unit was the most familiar place for us, there is still the requirement that nurses confirm the patient's name and birthday, as a safety measure, whenever they administer blood products or medicine. Brent, naturally, used a lot of both. But he would always rattle off his birthday and hospital MRN number in his sleep, or mumble it through a narcotic haze, preferring this to waking up, having lights turned on and showing the nurse his armband. His date of birth was repeated so often, that to this day, I struggle to come up with Lauren's, or even my own birthday, whenever asked. "October 7, 1999" was repeated so often, it just falls out of my mouth, like drool from Pavlov's dog.
Littlest Heroe is a terrific organization that supports families dealing with pediatric cancer. After Brent died, they worked with legislators in Ohio and had October 7 declared RamerNation Day, to honor Lauren and Brent's struggle with cancer. I am grateful for the way that this day has been transformed from one that is unavoidably difficult for our family, into an opportunity for those who remember Brent to reach out to us and share a memory of him, or what they did to make the world a better place. Hearing about acts of kindness and knowing that our son is remembered, these are such a precious gifts.
I began my RamerNation Day helping the girls scurry to school. Olivia had slept in, tired from her soccer tournament over the weekend. After they left the house, I recieved a text from "Brent" reminding me to pick up after Art Club. Olivia uses Brent's phone and I haven't brought myself to adjust the contact information to reflect this fact. I am glad that Liv is enjoying the things that Brent would have at that age, had he not been in treatment for his first cancer, osteosarcoma. Lauren is similarly active: in marching band and cross country, taking AP courses, working on college applications. Again, Brent would have been doing these sorts of things during his senior year, had he not been battling his last cancer, a relapsed leukemia.
Ever generous, I know that Brent would be happy for both of his sisters and I try to keep my focus on this fact. But the way that their lives in this moment represent the bookends of his cancer experience stays with me. It seems to curve around the possibility of what his life might have been, like parentheses, which mentions an idea while still separating it from the subject.
I took a call to prepare for a presentation at the NIH Cancer Steering Committee meeting next month. This, I will say, was my contribution to RamerNation Day, honoring Brent and trying to make the world a better place. In November, I will have the opportunity to speak to those who shape policy, who work in industry and design clinical trials. I can share Brent's experience to show how the process might be improved and progress might be accelerated. As much as Brent taught people in medicine during his life by doing unproven things, his experience can continue inform even after his death, and have a positive impact on policy, especially as it relates to inclusion criteria on clinical trials.
I miss him every day.
Alex texted, checking in with me from Ann Arbor. I wish we could be together on this day, but he has midterms. Dan visited last weekend. I will visit him next weekend.
Thank you to all who reached out in support of our family. I believe that the hardest part of the second year is that after the exceptionally difficult year of "firsts," people seem to view lingering grief as unnatural. It is different in the second year, in that people now generally shy away from Brent's name, an indication that we should have accepted the loss of him and moved on with our lives. We continue to live, of course, but Brent will never leave the heart of who we are as people, or as a family.
RamerNation Day allows for the saying of his name, and provides an opportunity for others to share how they remember Brent's life. Although in our house, we do this the other 364 days of the year as well.