rhabdo research

At the end of August I took a trip to Portland, Oregon to take an intensive 5-day “Pediatric Cancer Nanocourse” at the cc-TDI lab (where my phenomenal niece, Cora Ricker, works!) to study rhabdomyosarcoma, the kind of cancer Kiley was diagnosed with. It was an incredible opportunity to learn first hand from world experts on this disease and other rare cancers. 

There were about 20 other parents and loved ones from all over who were also in attendance, with the goal of the course being to become an “informed liaison between childhood cancer researchers and the community.”

This trip was mixed with an abundance of emotions, as I have not bathed myself quite like that in scientific research of this kind since those days when it felt like we were being held hostage on the 8th floor at CCMC – and I feel incredibly lucky to say that those days are now a little over three years ago. However, in addition to feeling astoundingly blessed, I was constantly swatting away these awful conflicting feelings of survivors guilt because Kiley was the only child who was still here on earth out of the 4 people on our rhabdo team who had come to the course to exclusively study rhabdo. It was heart wrenching to say the least. This team is the reason for this update, and I can’t think of a better time to post it than during September; the pediatric cancer awareness month.

The first person I met was an extremely strong and well-spoken woman named Cassie. This woman can knock your socks off with the size of her heart and her ability to advocate for what she wants, and what she wants is to stand by her son, Sam, and materialize his dying wishes from four years ago, “To help all the kids.” Sam was only 5 when he was diagnosed with stage 2 embryonal rhabdomyosarcoma. He fought HARD for 13 months until he passed away in September of 2014, leaving behind his parents and twin sister, Ava. The whole family unit works hard to honor Sam’s wishes through the Super Sam Foundation, which I highly suggest you check out. One of my favorite parts of this foundation is the “sibling packs” that Ava started, and the fact that they just helped turn their town gold for September. This family is surely making a difference in honor of Sam. #SuperSam

The next person I met was Karen, an absolutely amazing person with the most beautiful and caring soul. You could feel her presence from across the room. At one point on the very first day as I told Kiley’s somewhat draining story to the whole room, I felt this stranger’s hand rest on my shoulder and suddenly provide me comfort when I really needed it, and sure enough it was Karen. Just three months prior to this event in May of 2018, her brave 14 year old son, Cooper, had passed away after his second relapse with alveolar rhabdomyosarcoma, despite 3 trials and a Hail Mary drug, leaving behind his parents and older brother, Kellen. He deserved better! So much better. What struck me the most about Karen was that even in her mourning, Karen had the ability to attend this course and the drive to take her pain and turn it towards helping other families and children not have to suffer like Cooper and her family did. That speaks volumes. #Cooperstrong

The last member of our team that I met was an inspirational 11 year old, named Calleigh. She explained how different types of cancer had touched her life in many ways, but that recently, her good friend Holly had been diagnosed with stage 3 embryonic rhabdomyosarcoma when they were in third grade together. She told us how Holly fought her cancer for 2 and 1/2 years with bravery and taught everyone around her that LOVE IS EVERYWHERE. Holly had enjoyed 6 months of remission after undergoing intensive treatment, but relapsed again in January 2017 while she was in 4th grade. Calliegh said, “she passed away this year while we were in 5th grade together on March 30. I really miss her.” (If you look up Holly’s Team on facebook you can follow her story – But fair warning, what the mother bravely shares is brutally honest and can be difficult to look at and read, especially for children. However, I do not say that with judgement as it is her story to tell and I respect her for sharing it so truthfully and honoring her daughter as best she can.) #hollysteam

Hearing the view from Calleigh’s perspective was a new and profound one for me. I love that even though she is not a family member or relative of Holly’s, she is a friend and a classmate, and that even as a child in elementary school, she is determined to make a difference and honor her promise. When we asked why she chose to come to a course on cancer for adults, her answer was this: “I promised my friend Holly I would be part of finding a cure for sarcoma cancer. I am working with NW Sarcoma foundation helping with their upcoming walk and learning about foundations. I also did my science fair project on sarcoma cancer current and future treatments. I got to work with Dr. Charles and Cora at the lab and learned so much. Dr. Charles talked about how math is very important to finding a cure and math is my favorite subject. I am looking forward to this camp and learning so much more and getting closer to my goal of becoming a bio chemical engineer and working with cc-TDI in the future.” WOW. Enough said! Way to go Calleigh!

During the course we were encouraged to select a group research project. Our research kept leading us back to the same thing. Think about it….. Doesn’t it feel like we are always reading headlines that say something like, “ground breaking treatments!”, “new cancer therapy!”, and “less toxic treatment alternative found to be successful!”, yet we never seem to hear about it ACTUALLY being used in pediatric cancer?? When we went in to treat Kiley, they were still suggesting the same drugs from the same pool of drugs (that have not been successful, by the way!) they’ve been using for the past 40 years or so. In fact, since 1978 ONLY 6 NEW DRUGS HAVE GAINED APPROVAL FROM THE FDA FOR TREATMENT OF CHILDHOOD CANCER. That’s just gross. That’s four decades of kids suffering from cancer, kids dying, and doctors using the same drugs over and over and over that they know DOESN’T WORK for everyone. Not cool.

So, what do we need? We need to move the drugs from the lab into clinical trials so that these drugs actually reach children. How do we do that? We raise money to help fund these new treatments so they can get into a clinical trial. I am a supporter of many things – but right now I am asking that you consider buying one of these sweatshirts/t-shirts to support these kids, like Kiley, that may still have a chance to benefit from this research if we can raise enough money in time. You will be supporting Calleigh, who designed them and our team who put them together as our project. Why? Because the money literally goes STRAIGHT to an account at cc-TDI that will be held for a research project DIRECTLY on rhabdomyosarcoma. Plus, you can wear your shirt with pride, knowing that you ARE going gold, you ARE NOT turning your head because pediatric cancer is too painful to think about, you ARE spreading awareness, and YOU ARE LITERALLY HELPING SAVE LIVES. You can purchase the t-shirt here.

Thank you for listening, and if you made it to the bottom of this page, I sincerely thank you. It was a long, emotional, and educational week. I am still working on a research paper of my own for Dr. Charles, so I have my work cut out for me, but Kiley can’t fight this alone. And quite frankly, IF rhabdo comes back someday with a vengeance like they predict, our goal is to not be blindsided and to be prepared to meet it with a drug that we know will work!!!

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