"V is for Victory" Fund
When you first get the news that your child has cancer, you’re in shock and out-of-your mind with grief. When you then hear that the cancer is so rare that, for someone our daughter’s age, it only occurs in one in every ten million people, panic and fear immediately set in.
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Since my husband, Travis, works in healthcare, he has connections all over the country whichallowed us to quickly access the world’s best hospitals and leading chordoma specialists. While this is undoubtedly a blessing for us, we cannot stand to think about all of the people who don’t have these connections or the means to travel to these world-renown surgeons and hospitals to get the best treatment opportunities for themselves or their loved ones.
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Our family has started a fund called “V is for Victory” in Victoria’s honor. Our goal is to help pay for travel expenses, lodging, scans, labs, and other tests that aren’t covered by insurance for those who don’t have the means to be treated by the best doctors and hospitals who specialize in chordoma. Most doctors will never see a chordoma patient during their entire practice, so they don’t know enough about how these tumors need to be treated to achieve a successful outcome. These tumors are so complex and highly individualized that seeing a specialist is an absolute necessity.
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In fact, the majority of chordomas are found by happenstance. In our case, I was taking Victoria to the ENT to discuss the reason for her unusually loud snoring. The moment she stuck out her tongue to show him her throat, he knew what we were dealing with. Her tongue had nearly completely atrophied on the right side and her doctor could actually see the tumor tissue coming down the back of her throat, which he then showed me. He put a camera up her nose and we saw that her nasal passages were completely blocked. Finally, all of the ear pain, snoring, tongue atrophy, and unconscious drooling all made sense.
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After speaking with many specialists and hearing stories from other chordoma families, having an ENT who is able to recognize chordoma and correctly advise you on next steps is a rarity. We are certain that God led us directly to Dr. Todd Huber. We cannot thank him enough for remembering what he learned back in his residency. He said chordomas were always the morality tale of why you never biopsy a nasopharyngeal mass in the office. In the one-in-a-millionth chance it is chordoma, you’ve screwed up the entire management plan for the patient. We are forever indebted to him and blessed to call him a friend.
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Everyone deserves the same chance for the best outcome. We realize we can’t change the healthcare system, but what we can and will do is help chordoma patients get to the right people and places for treatment. Another critical factor in finding cures for chordoma is through the completion of clinical trials. There are drugs on the horizon that could be game-changers for those living with chordoma, but without enough patients to participate, the clinical trials can’t take place. Recurrence happens in 50% of chordoma patients. Victoria is having every treatment available to her this first go round. If her tumor comes back, she’ll run out of options since there’s only a certain amount of radiation any of our bodies can handle.
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We don’t want any patient to feel like they are left without a choice regarding the outcome of their future based on whether or not they can afford to travel and stay for the duration of a clinical trial. The “V is for Victory” fund aims to relieve the financial stress on patients so that they go take their shot at survival. The more clinical trials we can successfully complete, the more curative options there will be for every single patient, including Victoria! It’s a win-win for everyone.
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Thanks so much for your support!
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Paige, Travis, Victoria, and Wren Messina