ALSF Fund: Nathan’s Cancer Slayers Fund to Defeat Rhabdomyosarcoma
Nathan was one of a kind. A great soul, wise beyond his years. Loving and kind, funny, smart, interesting, easy-going, a little bit goofy, and always positive. He was the kid who gently and patiently helped care for younger children. The student who loved his physical therapy class and wanted to start a career in medicine. The loving son and brother who was crazy about the family dogs (Milo, Buck, Stoney, Parker, and Major Tom) and enjoyed being with his family more than anything. The sharp-shooter, Tolkien fan, accomplished gamer, tenacious soccer defender, and flag-football champion. Nathan loved his big bowl of cheerios every morning and was especially fond of pizza, pasta and steak. He was passionate about college football and basketball (Go Blue! Go Dawgs!), a huge fan of Game of Thrones and Breaking Bad, an astute political observer, clever and quick with a comeback, super silly, always laughing and overflowing with love, empathy, and compassion.
In September of 2018, just after his 17th birthday, Nathan was diagnosed with alveolar rhabdomyosarcoma (ARMS), a highly aggressive, pediatric, soft-tumor cancer. What first appeared to be pink eye turned out to be a tumor in his sinuses and behind his left eye, which also began pushing his eye outward within a matter of days. His own muscle cells had turned against him, growing where they shouldn't and failing to turn off. Nathan’s family was in disbelief that their little “tank” who never got sick, never missed a day of school, had cancer.
Nathan never wanted his disease to define him. He shunned pity and made all the doctors and nurses laugh. He remained positive and a joy to be around throughout his struggle. When his mom complained bitterly that his cancer was evil, he disagreed: “Look, it made me lose 50 pounds of fat!” Or when the EMTs asked him to put his arms up, he said: “What, am I under arrest?!” Once, when his mom asked if he and his dad were on the way home from radiation treatment, he responded, “Nah, they kidnapped me and are holding me for ransom. They want 1,000 Taco Bell Doritos Locos Nachos Tacos.” Humor in the face of adversity. Classic Nathan.
In early October 2018, Nathan began treatment. Over the next year he endured six different types of chemotherapy, dozens of radiation treatments, numerous surgeries, infections, emergency department visits and hospitalizations. All this while he should have been enjoying his senior year in high school and deciding where to go to college. However, as a testament to his resilience, Nathan managed to complete his studies and graduate on time despite being homebound.
Two months into this terrifying roller-coaster ride of fighting his cancer, the tumor in the original location in his sinuses and behind his eye was gone. Unfortunately, the “smart” cancer had evolved, and was pressing against his frontal lobe. Fast forward a few months, and after aggressive chemo and intensive radiation, it appeared that Nathan was cancer-free. But that was horribly short lived.
Just two days later, in late March 2019, Nathan’s family were told the cancer had metastasized into his cerebral spinal fluid (CSF) and now tumor cells were washing around his brain and down his spine (also known as leptomeningeal disease). Life expectancy when that happens is maybe a few months. The battle was far from over, but Nathan was unshaken.
By the summer of 2019 he was in hospice care. The relentless tumor returned in the original location behind his eye and was growing again (that area couldn’t be irradiated further so that treatment option was off the table). Cancer was still in his CSF and running rampant. His platelets were too low to continue toxic chemo treatments. He could no longer walk and had severe pain in his back, which he quietly endured. The cancer was also growing in his brain by then. He lost all vision in his left eye as the tumor there grew. (He said, in typical fashion, “If I lose one eye but beat the cancer, that's no big deal; by the time I'm your age, Dad, I'll be able to pick out a bionic eye online!”) Then he lost his hearing from tumor cells affecting the nerves in his brain stem. Soon his right eye started to go blind also. Bed-ridden, deaf and nearly blind, Nathan still said he was going to beat it.
Nathan’s mom and dad, Michele and Michael, older brother, Spencer, and step-mom, Salma, researched extensively and tried desperately to find a cure for him. They sent samples to the Nagourney Cancer Institute in California, which offers personalized cancer testing to help select the most effective treatment for your cancer. They had high hopes. But at the end of July, the cancer was still growing. They finally turned to an alternative medicine protocol (EGCG) after modern medicine gave up on him, despite his grit, unbelievable grace, and determination to live.
On September 28, 2019, just eight days after his 18th birthday, Nathan sadly passed away.
Nathan’s unbelievable courage, kindness, and beautiful spirit always shined through, as reflected in the words of Shari, one of Nathan’s hospice nurses : “As I cared for Nathan, he never ceased to amaze me as he continually adapted to the ever increasing symptoms of his disease as it stole his hearing, eyesight, strength, and ability to chew. Nathan turned to using the white board to communicate, pushing his jaw up and down to eat, holding his eyelid open to read. He never complained. His fortitude did not waver. I am not sure how many people in his situation would handle themselves with as much grace and dignity as he did. And, Nathan was polite. I always appreciated him saying, ‘thank you’.”
That Nathan approached his illness with such strength and courage was hardly surprising. He was resilient and fearless from the time he was a toddler: riding his bike like Evil Knievel, skiing straight down steep mountain trails at high speed, and countless other dare-devilish acts. Even a fractured leg and two casts didn’t slow him down when he was 2. And he was always calm, even under immense pressure. In middle school, when his best friend tripped on the steps and a porcelain cereal bowl broke – somehow severing his friend's artery – Nathan calmly applied pressure and called 911. His friend almost bled out but survived by a whisker. EMTs came to the door a few hours later and reported that if Nathan had panicked, even for a minute, his friend certainly would have died. They said he was a life saver, a hero.
“Nathan showed us strength through pain, perseverance through fear, gratitude through disappointment, and joy through darkness. He inspired us to be better people, and he made the world a more beautiful place,” said Michael, his dad. He is loved more than words can say by his entire family. His grandmother spent the last six weeks with him, trying each day to help him live. His grandparents, aunts, uncles and cousins knew what an exceptional person he was, and all shuddered to imagine a world without him. He was and will always be loved immensely and offered a heart full of love himself. All will miss him dearly.
In the words of Barb and Mickey Watts, who cared for Nathan and his brother from the time they were babies until age 5: “From the beginning, Nathan was a sweet and special child - he made the world a better place in every way. And, until my last breath, I will hear his laughter, and I pray you all will as well.” Barb also said, “Nathan was tuned into others – seeming to sense when you were having a rough day – he’d come over and rest his head on my knee, look up and smile with that sweet little face and then toddle back to the playroom with his friends. How could your day not improve when Nathan was around?!” And everyone Nathan met throughout his short life felt exactly the same way.
Nathan’s amazing kindergarten teacher, Manju Nair – whom his mom, Michele, reconnected with after 14 years thanks to Alex’s Lemonade Stand Foundation’s The Million Mile event and divine intervention by Nathan – told her how Nathan “inspired her and everyone in the classroom with his gentleness and kindness.” Manju said, “After I had my first child, and throughout the years, I thought about Nathan and tried to emulate his kindness with my kids, hoping that they in turn will pass on the kindnesses, as Nathan did, to other people in their lives. Ripple effects!”
His football coach, Gary Karton, also had kind words to share: “Probably my favorite memory of Nathan is seeing him running to practice just as we were about to start. Still, everyone on the team was so excited to see him. He was one of those kids that everyone liked, I think mostly because things seemed better when he was around. He was quiet, but that easy-going manner and generous spirit was contagious. He was a competitor, no doubt, but always with good sportsmanship and with a perspective about competition that was beyond his years."
Coach Karton's number one rule was to “always support your teammates” and said there was no better example of someone who took that rule to heart than Nathan. "He was the first person to pat someone on the back, cheer them on, or do that perfectly subtle and appropriate little gesture to make them feel better," he continued. "He showed no ego and was just a great, smart, athletic competitor. Nathan loved to rush and I loved that because it was the hardest and most important position by far. It required a rare combination of athleticism, control, perseverance and intelligence. That was Nathan. In the end, winning a championship was nice but it’s not what I think about when I think of Nathan. Not even close. I think of something way more important. The way Nathan conducted himself every practice and game with integrity and joy. What a great combination. I still smile even now when I picture him running to practice.”
“Nathan’s determination, unbelievable strength, and amazing spirit in the face of the worst possible adversity motivates me every day to do what I can – with Nathan leading the way – to help other kids and their families win their battle against stupid cancer, in honor of my beautiful Nathan,” said Michele. “No child should ever have to suffer as our Nathan did, and no parent, grandparent or sibling should ever have to experience the inexpressible grief of losing a child, grandchild, sister or brother to this horrific disease. Nathan continues to astonish me every day and his brilliant radiance, compassion, and courage continue to ripple out into the universe in profound ways.”
Amount Raised:
$579,915
Fundraisers with recent donations
Total: $579,914.55