September is a month filled with awareness. I could certainly use Brent's same inflection and sarcasm right about now. "Cancer? I am aware."
The Ramers have long been "Going Gold" for childhood cancer in September, which, conveniently for us, is the same month and color for Sarcoma awareness, a malignancy that we have dealt with three different times in our children. We can thriftily drape those gold ribbons for double duty. In addition, the Leukemia Lymphoma Society recently notified me that September is also Blood Cancer awareness month, but I am pretty sure that this would be a red ribbon. Even so, we seem to have a good portion of our cancer awareness bases covered as autumn commences.
I have had trouble writing lately. My thoughts and feelings are difficult to articulate, and when I do tease them out, I am reluctant to weary the world with them. Grief is complicated.
Our summer began with a week of sketchy scans in Houston for Lauren. Her concerned doctors ordered follow up imaging in August (which was found to be blessedly clear.) In the interval, we filled our calendar with as many fun things as we could manage, including a quiet week at the beach. There is an unspoken urgency in our planning, both to make up for things that we were previously unable to do, and to do them quickly, before we become medically busy again.
Our summertime activities were good of course, but it was kind of like enjoying Nutella between moldy slices of bread, which is hard to stomach at times. On the other hand, if you all you have is moldy bread, slathering it in Nutella is definitely the way to go.
In addition to some purely recreational activities, I recognize the luxury found in having time for advocacy, and the chance to bring about positive changes. Lauren has lent her voice to organizations that she trusts and believes in: Kick It, which is now a part of Alex's Lemonade Stand Foundation, Flying Horse Farms, Teen Cancer America, Flashes of Hope. She has spoken with folks at Rainbow Babies and Children's Hospital about partnering with them in order to make things better for teens with cancer.
In addition to doing similar work at Rainbow, I have been reaching out to national advocacy groups in order to help shape policy at FDA and NCI. Whenever I think about how I might make it better for Lauren with her next cancer, I return to the arbitrary wait that Brent was forced to endure. Despite relapsing in early July, he had to delay until after his 18th birthday in October to queue up for the adult CAR-T clinical trial. He was not able to have his cells collected until mid November. The next six weeks, spent waiting for the cells to be modified and expanded, were excruciating. We helplessly watched as Brent got sicker and sicker. As tenacious as my son was, both the disease and the system were stacked against him.
Lauren will be 16 in a few weeks. I am keenly aware of this happy September event, but recognize that it might not be sufficient to her needs. I would never wish away this time as she returns to deliciously normal high school experiences, but we know that lot can happen medically in two years. I read every day about promising adult trials, for every type of cancer. While I sincerely hope that Lauren never needs them, the fact that she is barred from until she turns 18, this absolutely haunts me.
The Ramers interviewed with a local television station back in April (Alex was not there--off studying in Australia) Fox 8 began airing the piece last week to promote their annual charity walk/run. The 2018 Fox Trot on Saturday, September 8th will benefit Alex's Lemonade Stand Foundation. (Come on out!)
I am hoping that by sharing our story, we might encourage folks to attend the event, which raises awareness and funds for pediatric cancer research. But also, I hope it increases awareness about how adolescents are excluded from participation in adult clinical trials, an entirely arbitrary limitation that has enormous consequences, as we have experienced. I hope that by sharing our difficulty, we can help to change this policy.
Here is a link to the piece: Fox 8 News Story
2018 Fox 8 Fox Trot
Saturday, Sept 8
Rock Hall Plaza
7am Race Day Registration
8am 1 Mile Walk
9am 5K Run
REGISTER HERE
If you cannot attend the race, but wanted to support ALSF, here is a link to Brent's Obituary page:
Thank you always for your kindness and support.
