Holmes – Vs. Cancer National Event Star Ambassador

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Holmes is a 13-year-old boy who has been battling a brain tumor since he was 5. An avid baseball player, the diamond has indeed been Holmes’ happy place.

Spring of 2014, our family noticed that Holmes was having issues with his balance, and he started acting unlike himself. When he opted not to go to baseball, we began scratching our heads. During one of his games, he said he didn’t feel up for his turn at bat, and we knew something was wrong. One weekend his eye began to stray from his line of sight, and we took him to the doctor. His pediatrician referred him to a neuro-ophthalmologist who saw pressure on the optic nerve, and we were rushed to the emergency room. Holmes graduated from preschool that morning, and by the end of the day, we were told he would be having his first emergency surgery to relieve the swelling in his brain. Soon after, we heard those dreaded words: there is a tumor in the center of his brain. We were deer in headlights, relieved that he had made it through this one surgery but with no idea what the journey he was about to start would entail.

The doctors monitored his tumor, which continued to grow, and we met with many different neurosurgeons and oncologists who had differing opinions on the best course of treatment. Holmes’ tumor is inoperable by location and nature. His neurosurgeon at the Children’s Hospital of Philadelphia safely removed just enough tissue to determine the type of cancer but could not get any further diagnostic genomic information during that surgery without causing damage. Pathology revealed a Grade 2 diffuse fibrillary astrocytoma in the thalamus and hypothalamus with no borders, meaning it reaches into healthy tissue of the brain, making it impossible to remove safely. We heard stats that no parent wants to hear… his tumor type in that location did not have a favorable prognosis, with an average five-year survival. We were also told not to give up hope, that every kid is different, and dedicated researchers are constantly working to find cures. Soon after, we learned how incredibly underfunded childhood cancer and pediatric brain tumor research is because it is “rare,” although it does not feel rare to our family. Thankfully some progress has been made, and there are more options now than when he began this long journey. Children diagnosed with brain tumors still need less toxic treatments that don’t cause lifelong chronic issues. We still need a cure!
Holmes has endured 40 chemotherapy infusions. He spent a lot of time in and out of the hospital due to being neutropenic and immunocompromised. He also developed a respiratory allergy to his chemo, which was terrifying. Holmes had to have another emergency surgery to relieve the pressure once again: he was playing a baseball game; the next day, he was in the operating room. Those bouts of hydrocephalus due to the tumor have caused irreparable damage to his optic nerves, a side effect of his brain cancer that we monitor every 4-6 months. It is a nerve-wracking waiting game. The chemo did not shrink the tumor at all, it continues to reside in the middle of his brain, but we are grateful it has been essentially stable other than some pesky cystic components. He continues to get MRIs every six months and has had 25 MRIs. Like a champ, he handles the appointments, usually watching Sandlot and remaining very still and calm. The “scanxiety” remains very real with each MRI. His tumor has caused some side effects such as headaches, dysregulation of his body’s thermostat, especially when he gets sick, and some chronic endocrinopathies, closely followed by a team of excellent specialists at the Children’s Hospital of Philadelphia and Mission Pediatric Oncology in Asheville, NC. We know he is in this for the rest of his life, but he continues to beat the odds and defy those stats! Our Holmes Team Motto has been Love Heals…truth be told.
He has had a ton of support from his baseball teams and our community- small and large- which we 100% attribute to keeping his spirits positive. His youth league, all-star, and travel ball teams and coaches have gone the extra mile to lift his spirits through this entire journey. They have rallied around him in some unique ways and helped raise awareness and funds for pediatric cancer. They have played as the “Holmes Team,” and many have “root rooted for the Holmes Team” all along. Through this journey, Holmes has played baseball every opportunity he has been able to. He could not play a couple of seasons because he was sick or his blood counts were too low, but it has been inspiring to see his love for the sport keep him going. When he would get his port accessed, which was often several times a week, he would squeeze mom’s hand and say “baseball, baseball, baseball”- never crying a tear- always so brave, witty, and resilient through treatments, surgeries, and days of feeling run down both physically and emotionally. His most significant pillar of support is his little brother, Vincent, also known as the ‘Captain.’ He has been there every step of the way and at every game.

Holmes still overcomes many obstacles his sneaky tumor tries to throw at him. His tumor caused some issues with his balance, and it took him years to be able to ride a bike. He is now an avid mountain biker. The tumor is also situated in a cognition center, and Holmes must work extra hard in school. He has missed so much school due to doctor’s appointments and days not feeling well, but still, he has made A’s and B’s all along. He powers through some residual neuropathy in his heel and leg. Still, he continues to grind on the field, and this year he even played recreation league basketball and started CrossFit to battle back, trying not to let the pain hinder his childhood and conditioning.

Holmes has always been active in using his story to help highlight the need for more funding for pediatric brain tumors and is serving as the 2022 Vs. Cancer National Event Star Ambassador, encouraging all athletic teams to fundraise and designate a home game to kids battling brain tumors, April 22 – May 1. He has been pumped to start up fundraisers at his school, participate in walks and rides, and host a toy drive for our local hospital, advocating through it all. He knows the odds have been stacked against him and other cancer kids, but he continues to choose to use his voice and has shown some pretty excellent leadership skills. He was invited to be an Envision Scholar at a National Youth Leadership Conference in Washington, DC. He ran for President in a mock election, and his charismatic personality shined through. One of his slogans was “Vote for Holmes- He Loves Baseball!” He has seen how teams can rally and make things happen. He won that election…
Holmes steps up to the plate, determined and unhinged by his diagnosis. He knows he is lucky and that so many kids he walks this path with have very different outcomes. He also knows that his tumor could change at any time. He makes the most of the moments and appreciates his community, his team, and coaches for joining him and all the other kids in trying to make a difference. This year he made the Brevard Middle School baseball team again, and they are stepping up to host a Vs. Cancer game. This roster is full of many players he has played with since tee-ball and Little League. Once again, team spirit rises to the occasion and stands up to fight childhood cancer. The baseball diamond really is a field of dreams. Holmes lives fiercely with his tumor; he is battling, surviving, and THRIVING with cancer.

We are # VsCancer, and we are #StrongerTogether.
For the Kids,
Clare Desmelik, Holmes’ mom

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