The Victoria Marsh Osteosarcoma Research Fund

Victoria was 13 years old, a competitive swimmer and in 7th grade when she complained of ankle pain early in December 2014. Our family was not prepared to hear the words “your daughter has cancer” just a few days later. We quickly learned that Victoria was one of only a few kids known to have both Down syndrome and Osteosarcoma. To complicate things even more, Victoria’s cancer had metastasized to her lungs. Two weeks later, after many tests, scans, X-rays and second opinions, Victoria began her inpatient treatment that would last roughly 9 months, with her getting to go home for about a week every 2-3 weeks. During this time she received various chemotherapy drugs, countless blood and platelet transfusions, a left below the knee amputation, a long battle with C-Diff, and two thoracotomies. We withdrew her from school as she could not be around many people due to her compromised immune system.

She received her “fancy foot” in the spring of 2015 and was walking independently on it by the summer. Over the next year she had two more thoracotomies. However, all this did not stop her from continuing to swim when she could. She had the amazing opportunity to learn to surf in California in the spring of 2016. In the fall, Victoria excitedly entered high school where she immediately became a manager of the volleyball team, co-treasurer of Family, Career and Community Leaders of America (FCCLA), a Best Buddies member and a varsity member of the swim team. Victoria learned to snow ski in February 2017 thanks to her prosthetist who was also an amputee and sarcoma survivor.  

Victoria graduated from high school in June 2020.  She aspired to be a para-professional in a local preschool and had a part-time opportunity lined up.  She enjoyed singing karaoke, baking, playing cards, dice and board games and spending time with her Sigma Kappa sorority sisters.  She loved to write in her many journals, which are a treasure to find and read now.  

Victoria enjoyed receiving her MIB Agent Warrior mail.  The encouragement provided in each of the notes and letters was priceless.  The boxes often came at the perfect time to lift Victoria’s spirits.  2021 was a very difficult year - the many appointments, changes in her care coordinator, an intense chemo (ifos) treatment, not being able to see friends, not being able attend school and just not being able to get out due to COVID all had really taken a toll mentally.  All along, Victoria fought lung mets that just kept appearing. Non-stop, over her last few years, she participated in an immunotherapy trial, had numerous Cyberknife procedures, been on various chemo regimens and took oral chemotherapy along with IV chemo that required hospitalization for a few days every 4-6 weeks —all to attack the pesky lung nodules.  

Thanks to the MIB FACTOR conferences, Victoria met some amazing friends who understood her.  She loved being part of HQ and providing input on what the host hotel should offer for her and the others in HQ.  Victoria always had something to look forward to - we had to focus on the positive.  It’s just how Victoria lived - whether planning time with friends or dreaming of a trip, she almost always had a smile on her face.  

We are grateful Victoria was an outlier for six and a half years.  Osteosarcoma is just plain ugly. The reality is warriors will fight this disease FOREVER. We just don’t know how long forever will be for each of our kids. Selfishly we all want forever to be, well forever….years and years from now. But without research specifically designed to target osteosarcoma, the reality, unfortunately for too many families, is that this “forever” isn’t far enough in the future.  Ours was too short..  Victoria died 6 weeks before her 20 birthday which she had hoped to spend in Miami.  She and too many others have died too soon.  

Victoria created a poster during her first chemotherapy admission. This poster immediately became “her statement” – Let’s Kill the Cancer!  

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