Aiden Dax Snyder, or Aiden Dax, as he like to be called, at 2.5 years old was a spirited, curious and exuberant little boy with a smile and love of life that was infectious. He was our fearless warrior who at a very young age exhibited such courage and strength that we always joked he would be the protector of his older and much bigger brother, Avery. His energy was palpable and everyone that came in contact with him quickly learned that this little boy had a special soul. As a toddler, Aiden was always non-stop, on the go, all the time. Jumping off couches and beds, pouncing on his trampoline and wrestling with Avery. It seemed that nothing could or ever would, slow him down.
As rambunctious as Aiden was, deemed our wild child, he was equally gentle and tender. He was always running around trying to hug and love Avery. He adored his stuffed animals which seemed to multiply by the day. He would fill his crib with all of his animals and cuddle into them often inviting Avery to join in the fun. His collection grew so much that eventually they needed their own animal “zoo” to live in. His favorites, Mickey Mouse and his soft lovie, affectionately named “baby”, went everywhere with him.
Aiden loved being the little brother, but was very excited when he learned that he was going to be a big brother. Aiden’s tender side would shine through each time he kissed and played with his baby brother growing in mommy’s belly. Aiden was strong-willed and determined which showed more and more in his personality as he grew. At the time we did not know it, but these qualities would help him thrive through some of the darkest days that would lay ahead.
In the early spring 2019, our lives changed forever. After about 2 months of progressive symptoms that ranged from sporadic fussiness in the mornings to daily complaints of headaches, our happy, rambunctious and carefree 2.5 year old was just not himself. We knew in our gut that something was wrong, but like all parents, we had hope that a quick trip to the pediatrician would solve the problem. A week after his first appointment with the pediatrician, we pursued our concerns further and were able to get into CHOP neurology on a cancelation followed by an MRI that Saturday. On April 27th 2019, our worst fear, every parent’s nightmare, came true. As we sat in the hallway outside of the radiology department waiting for what we were told would be an hour and half study, our phone rang 45 minutes in. Aiden had a brain tumor. It was large, they needed more images and he would be transferred to the Pediatric Intensive Care Unit.
Early the next morning, Aiden underwent emergent surgery to remove the tumor. That was the longest 12 hours of our lives. Dr. Philip Jay Storm, Aiden’s neurosurgeon, with his quiet confidence, told us, “I think I can get it all”. Dr. Storm delivered and removed the entire tumor. But, that was just the beginning of Aiden’s journey. The official pathology confirmed that Aiden’s tumor was a Choroid Plexus Carcinoma, an extremely rare and aggressive brain cancer that had invaded Aiden’s healthy brain tissue. We later learned that the tumor had metastasized to his cervical spine. Aiden would endure two more surgeries, a second craniotomy to release fluid which had become trapped by scar tissue and a partial laminectomy to excise the spinal tumor that did not budge in size despite two rounds of high dose chemotherapy. Aiden's treatment, led by the wonderful Dr. Peter Phillips, consisted of 3 rounds of induction chemotherapy over a period of three months which included multiple hospitalizations. Following induction chemotherapy, Aiden battled through 2 cycles of high dose chemotherapy with autologous stem cell transplant each involving a month long hospitalization. Each cycle came with its own set of risks and complications. The entire treatment course was followed by a continued period of isolation for 100 days.
Aiden confronted these adversities with astounding grace and courage. Even on his worst day, Aiden managed to smile and make everyone around him feel the joy that lived deep inside of him. During treatment, his imagination and creativity blossomed and we watched as our little boy grew up under the worst circumstances. Despite being confined to a small hospital room for almost a month at a time, Aiden found joy playing for hours with his toys, doing arts and crafts and escaping in the magic of his Disney movies that he loved so much. With the help of his mom, Aiden’s hospital room was transformed into a cozier version that resembled the warmth and comforts of home. Aiden had a play mat where he spent hours, day and night, creating a world in his mind where he wasn’t confined to a hospital. A world where he wasn’t sick. A world where he could play like any other child. His art and sticker collection covered the walls and his toy collection seemed to grow at a furious pace.
On days when he was feeling up to it, he would run down the hallways of the bone marrow transplant floor at Children’s Hospital. If he was lucky, he would get to race and play with his friend, Jack, a boy he had met just a few doors down on the Bone Marrow Transplant floor. Jack was Aiden’s first real friend and their bond would help foster a friendship that continues to this day between families.
But treatment was hard on Aiden and there were certainly many days when Aiden didn’t want to leave his hospital bed. There were days when he longed to be home and days when he just seemed sad. However, on most of these days, he eventually found the strength within to get out of bed and play with his cars or paw patrol figures on his play mat. If we were lucky, he would agree to go for a walk down the halls, his IV lines in tow.
Halloween 2019 brought the end of Aiden’s treatment. He was discharged from the hospital cancer-free. He dressed up as one of his favorite Paw Patrol characters and enjoyed trick or treating with his brothers and cousins. Life was slowly returning to some form of normal. Aiden was finally willing to leave the house and venture out. Home had become his safe place during treatment and it took time for him to trust and realize that when we left the house, it didn’t mean a visit to the hospital or the clinic for checkups or admissions.
At Aiden’s routine 3 month follow up MRI in late February 2020, we discovered that his cancer had returned with a vengeance. The cancer had now spread to multiple areas of his brain as well as his spine. The peace he enjoyed with his family and the time spent together was, sadly, short-lived. Given how widespread the recurrence was, Aiden’s prognosis was poor. Due to how aggressively his disease had returned just three months after therapy, his cancer was considered to be chemo-resistant.
Over the next three months, Aiden underwent experimental treatments designed to target his cancer. The goal was to identify potentially effective therapies without the horrific side effects that came with traditional chemotherapy. We made the decision that Aiden would not spend another night in the hospital. There was no hope for a cure, but only a hope for the miracle of time. During this period, Aiden continued to amaze us and confound his treating oncologists. As Aiden jumped furiously one evening on his trampoline, it was hard to imagine that his brain and spine were riddled with disease.
Just a short 3 months later, in the comfort of his own bed, with his mom and dad by his side and his brothers sleeping in the rooms next to him, Aiden took his last few breaths and left this world.
Aiden had a tremendous spirt and a presence that filled the room. He faced the unimaginable, but found joy in his life. The lessons he taught us will live on through the work of our foundation. There is no better legacy than saving someone else’s life.
--Natali and Dan Snyder, October 2020