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Hello friends and family! Today is Glen’s 7th birthday, and I was reminded that I am long overdue on sending out an update on him. Six was a tough year for Glen, and we are excited to move on and see what Seven brings! Here’s a little recap of the last year:
On September 6th he had surgery to attempt to repair his left tibia, which (finally*) broke on July 1, 2018. Surgery went long and he had some complications but was able to return to school after 12 weeks of recovery, just after Thanksgiving. He started walking mid-January and things were looking pretty good. We enjoyed a fun trip to Disney World in February with cousins, and then went back to Florida for beach time over Spring Break. Unfortunately, his bone broke again on that trip and he underwent another surgery April 16th. He recovered at home another 6 weeks and was able to join his class for the last week of Kindergarten and graduation. We are so thankful for his amazing Kindergarten teachers who visited the house during his absence and kept him right on par with his classmates! He spent most of his summer taking it easy and got out of his cast just before school started mid-August. He is up walking again some of the day and feeling good. He recently had a full battery of scans and we were excited to get results back showing that he is still cancer free- that marks 4 years!!!
We also got exciting news that affects many of you: Glen’s Hero Fund with St Baldrick’s reached the IMPRESSIVE figure of $100,000 this year, which means we were able to select a grant to fully sponsor in his honor! All of the money you all have donated to and helped fundraise for St Baldrick’s over the last 4 years is being put directly to use to research finding a safer cure for Rhabdo. Thank you!! See below for a short summary of what Dr Chen is up to, and we will have more info to share soon!
*For those of you who do not know about this particular challenge of Glen’s, let me (try to) explain. Glen was diagnosed with Neurofibromatosis Type 1 (NF1) at 5 months of age. This genetic disorder impacts his body in many ways; most notably he is missing the tumor blocking agent in his body that the rest of us have. Besides his Rhabdo tumor that tried to take his life, he also has a tumor on his optic nerve, NF spots on his brain (supposedly nothing to worry about), some minor markings on his skin, and Pseudarthrosis of the Tibia. Prior to the break, his tibia was severely curved and had a significant amount of sclerosis (dead/dying bone), so he wore a protective brace 24/7 to try to keep it intact. One of the weird things this disorder does is not allow the bone to heal or repair like normal. Unfortunately, it is a very rare skeletal deformity and varies drastically in its presentation, so trials are a challenge to populate, therefor there are not a whole lot of treatment options. Fortunately for us Glen’s surgeon, Dr Jain (the protégé of the leading, now retired, surgeon for this disorder), is relatively close-by in Cincinnati and is part of a larger group of specialists that we see through their NF Clinic, so all specialists he sees are on the same page, and oftentimes in the same appointment. We are very confident that Glen is in the right hands with Dr Jain, and are hoping for a longer surgical respite this time around!
Eleanor Chen M.D., Ph.D.
Funded: 07-01-2019 through 06-30-2020
Funding Type: Research Grant
Institution Location: Seattle, WA
Institution: University of Washington affiliated with Fred Hutchinson Cancer Research Center, Seattle Children's Hospital
Rhabdomyosarcoma (RMS) is a rare and devastating cancer of childhood. Identifying and characterizing novel genes essential for RMS cancer growth can help improve our understanding of RMS disease process. Novel genes identified can also serve as potential therapeutic drug targets for treating RMS patients. BCOR is among the most frequently mutated genes in RMS. However, the role of BCOR in promoting cancer growth and disease progression remains unexplored. As the recipient of the Glen Parker Bayne Hero Fund St. Baldrick's Research Grant, Dr. Chen is working to characterize the biological function of BCOR in RMS. Completion of the study will not only provide new insights into the role of BCOR in the disease process of RMS, but also therapeutic rationale for targeting BCOR in improving survival outcomes of RMS patients. This grant is named for the Glen Parker Bayne Hero Fund which was established to honor this little boy's courageous battle with rhabdomyosarcoma and celebrate his survivorship. Glen was diagnosed when he was almost 2 and endured a year of intensive treatment. Today he has no evidence of disease and Glen's Army, a group of family and friends rally to raise funds and awareness for research to find cures.
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