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. She enjoys baking, playing cards, dice and board games, journaling and is currently into creating house/room designs.
Victoria graduated from high school in June 2020 - unfortuately remotely thanks to COVID-19. She aspires to be a para-professional in a local preschool and already has a part-time opportunity lined up. Victoria enjoys receiving her MIB Agent Warrior mail. The encouragement provided in each of the notes and letters is priceless. The boxes often come at the perfect time to lift Victoria’s spirits. The past year in particular has been very difficult - 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 have really taken a toll mentally.
Thanks to the MIB FACTOR conference Victoria met some amazing friends who understand we always have to have something to be looking forward to. So in addition to looking forward to the conference in February, Victoria is currently planning her 20 birthday party this fall- Look out Miami!!
All along, Victoria has been fighting lung mets that just keep appearing. Non-stop, over the past few years, she has participated in an immunotherapy trial, had numerous Cyberknife procedures, been on various chemo regimens and is currently taking oral chemotherapy along with chemo that requires hospitalization for a few days every 4-6 weeks —all to attack the pesky lung nodules.
We are grateful Victoria is an outlier. Osteosarcoma is just plain ugly. The reality is we will fight this disease forever. We just don’t know how long forever will be for 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.
Victoria created a poster during her first chemotherapy admission. This poster immediately became “her statement” – Let’s Kill the Cancer!
A world with less toxic, more effective treatments and a cure for osteosarcoma.
We are devoted to creating and instilling hope with and for our inclusive and collaborative osteosarcoma community. We do this through mutual trust, transparency and compassion.