Long Overdue Update (We Know!)
Apologies for such a long hiatus from posting updates. We know we've dropped the ball and you deserve better from us, but we've been busy!
First thing's first - we know most of you are here to see how Rucker is doing. In the last post John explained that he was starting a new chemotherapy called Trabectedin. Rucker went through two rounds of it and handled it amazingly well with almost no side effects. However, scans after the second round showed some slight progression of disease in his bones. We were obviously disappointed, but quickly went to work to figure out what to try next. We weighed our options and decided to start him on a two-agent chemotherapy regimen that had already been recommended by our doctor and several other oncologists. So, on November 12, 2019, Rucker started his new chemo regimen of Gemcitabine and Docetaxel. This chemo has considerably more side effects than the Trabectedin did, but it still hasn't been as bad as the very first chemo that he did (which led to numerous fevers, infections and hospital stays). All of the chemo infusions are administered outpatient at our weekly clinic visits, so it's a nice change to not be admitted overnight for treatment (although we do miss our 8QB nurses).
Rucker stays in great spirits and is loving life. He did lose most of his hair around Thanksgiving, but he was able to keep a kickin' mohawk for a while. With the new drum set he got for Christmas, he has been feeling like a real rockstar lately! He goes to school as regularly as he can, and we are so thankful for all of the amazing teachers and friends he has. Putting him in the 5K class with Mrs. Michelle instead of sending him on to Kindergarten turned out to be a great decision. He has confidence, a great group of best friends (shout out to Martin, Connor and Sam, and of course Mr. Josh!), and has caught up amazingly well on the work he missed last year. He's writing his letters like a champ and loves to tell us all about what he learned at school. It is so nice to have some normalcy in our lives and we have certainly learned not to take these moments for granted. We have our next set of scans on February 24th, and we are hoping they will show stable disease so that Rucker can continue living a mostly uninterrupted, happy life.
Now, for some exciting news (and a little explanation of why we've been so busy and quiet). While Rucker has been undergoing chemotherapy for the last several months, we (but mostly John) have continued our search for the best experts, hospitals and treatment options available. Recall that last August after Rucker's lung recurrence, we flew out to Palo Alto to meet with pediatric soft tissue sarcoma expert Sheri Spunt and Rucker's lung lesion was surgically removed and sent off for RNA sequencing. Although the results of the RNA sequencing gave us a lot of additional clues as to what may be driving the cancer and what genetic pathways are affected, we still had few treatment options available (especially any that are actually FDA-approved for pediatric use), so we knew we had more work to do. Our research on SEF (what little there is out there) made it clear that general, traditional front and second line treatments will not cure SEF, and that novel, experimental therapies must be explored.
Understanding our mission, Dr. Spunt ultimately connected us with Dr. Charles Keller of the Children’s Cancer Therapy Development Institute (“cc-TDI”), which is a non-profit clinical research institution in Portland, Oregon that focuses on closing (or at least narrowing) the "pre-clinical gap" in childhood cancer research, and particularly focuses on finding novel and/or experimental therapies to treat rare pediatric cancers. After several phone discussions with Dr. Keller and his team about our fight against SEF, John flew out to Portland to meet the team in person. John was beyond impressed not only with cc-TDI’s facility, staff, and professionalism, but he was most impressed by their energy and passion for their work. Their team doesn’t bat an eye when a family tells them they’ve been told their child’s disease is incurable. Rather, it seems to drive them even more, to think outside the box and reach beyond the outdated standard pediatric treatment protocols that have gone unchanged for nearly 40 years (and at this point I have to really restrain myself from ranting about the unnecessary governmental red tape, lack of research funding, and lack of access to any drugs that aren’t approved for children - issues that pediatric cancer parents are unfortunately all too aware of - but that soapbox is for another day!). The cc-TDI team works incredibly hard every day to connect cutting-edge research to actual potential drug trials as quickly as possible. Their brilliant minds are exactly what we need in order to push to find a cure for SEF.
Science is amazing and we believe in it. RNA and DNA testing have cleared the way to find targetable therapies to attack specific genetic mutations in various cancers. And we’ve seen it work - just check out our friend John Rust's CaringBridge page for proof! However, even with the new promise of genetic research, there still must be a desire or incentive for drug manufacturers to develop certain targetable drugs; and when your cancer has less than 100 reported cases of it ever (with very few being pediatric cases), you quickly realize that you can’t put your trust in the big pharmaceutical companies or government funding to take the lead in studying and curing it. That’s the struggle we have faced over the last several months. We are desperate to save Rucker's life and any other lives that are suffering from SEF. No family or patient should ever have to hear that there is nothing more to do.
Because there is.
After John met with cc-TDI and their affiliates in November, he went into action and figured out what needed to be done to get a study on SEF started. And we don’t mean some study that may be helpful years down the road to the next generations of SEF patients. We mean a study of action, with the purpose of finding targetable therapies as soon as possible and to make SEF universally survivable.
SO...we are excited to announce that, as of January 10, 2020, a SEF-specific study has been funded and implemented at cc-TDI in Portland, Oregon! The initial aims of the project are to create a SEF patient registry, to collect, bank and test cell lines and live tissue, and to generate xenograft (mouse) models in order to simultaneously conduct active drug studies. The ultimate goal will be to take these results to actual human trials as soon as possible. We are so thrilled and grateful to have found this institution and for the generous funding of this project. We are now working to connect with other SEF patients (adults and children) and their oncology teams to collect tissue, compare genetic testing results and treatment histories, and to get started on finding a cure.
While there is still a lot of work to be done, John and I are excited to see these first steps become a reality. We will never give up on our mission to find a cure for Rucker. After all, how could we when Rucker himself has never even considered giving up? For nineteen months, he has endured indescribable pain, broken (and re-broken) bones, numerous hospital visits, countless pokes and prods, puking, crying, hair loss, and missed out on so many activities that regular kids get to do, ALL with courage, resilience, laughter, empathy and a positive attitude. With him as our inspiration, John and I continue to vow to leave no stone unturned in this fight.
As always, we are so incredibly grateful and humbled by all of the prayers and support we have received from all of you. Let's keep it up!
