While there is great focus on disparity, discord and discrimination between cultures, cancer is the great unifier. We parents, regardless of any other differences, desperately want the same thing for our children. Within the cocooned isolation of the oncology unit, we hold on to each other and to hope. We may pray in varied ways, but each of us utters the identical prayer. Please bring health to my child.
The world, as presented in the media is a clanging ugly noise, something that is piped in via the television found in the nutrition room. I generally turn it off, preferring the quieter expressions of love and kindness that we experience every single day.
While writing this, lyrics from some other lifetime, were called to my mind.
I enjoyed my occasional days at home when I could to get Olivia on the bus. Upon waking, Olivia would always roll over to sleepily greet the sunrise, declaring its beauty and promise. This morning when I woke her for school, it was dark outside, and cold. Her cheer and enthusiasm are blessedly unwavering.
We return to warmer climate next week. Brent will formally enter a clinical trial at MD Anderson in Houston for his relapsed AML, a research study that just began recruiting in mid August, only a month before we sought options there.
I picked Lauren up after a rare day without chemo, one that permitted her to attend class. We chatted over lunch about our family and the notion that "to whom much is given, much is expected." The Ramers have been given so much. While we have been given far too much cancer in my opinion, we are also loved and supported in ways I never could have imagined. Lauren and I agreed that we each have a talent, and we should use it in service to others.
My daughter is comfortable speaking publicly and uses her voice to help the adolescent cancer community. Brent, she pointed out, has knack for getting out of incredibly tight spots. His talent seems to be providing Proof of Concept to enterprising folks in medicine, like the surgeon who successfully grafted skin from Alex onto Brent last November.
While I cannot deny the truth in this, I would much prefer that he take up juggling.
I reminded Lauren that I have been following developments in immunotherapy for years. Emily Whitehead was a name I knew long before Brent had leukemia. Her success with Car-T had dramatically changed the treatment options in ALL. Reading about her and the brilliant researchers at Children's Hospital of Philadelphia brought me hope. I thought that using the immune system could transform all of cancer treatments, particularly for folks with LFS because it does not rely on our defective P53 function, as chemotherapy and radiation do. I even said back in 2015 when Brent first developed leukemia, knowing that Car-T was still limited to CD19 /ALL, that I would gladly stand in line if a CAR-T trial for AML were available.
We now find ourselves next in that line for an early phase I trial for CD-33 Car-T to treat his relapsed AML.
I wonder sometimes if I unknowingly made a bargain with God. I alternate in my responses. Should I be grateful about this, terrified, or completely pissed off? I always lean toward gratitude, but in the interest of honesty, have to reveal my conflicting emotions. Faith, I have always said, is hard.
Our home smells of wood smoke and spiced cider when we return. At Thanksgiving, for three consecutive years now, Brent will attempt something unproven. His daring is fueled by a mix of desperation and courage. As his mother, I choose to focus on his courage and his grace.
I wish we were simply taking a less traveled road, but Brent consistently steps into the wilderness with a medical machete, cutting a path for others to follow.
We welcome your prayers, however you form them.