Samuel

Nothing can slow this kid down, not even cancer!

Around Christmas of 2022, Sam's parents noticed that Samuel had a slight droop in his left eyelid. They took him to their amazing pediatrician right away, who decided to send him for imaging, just to be safe. On that CT, a pea-sized mass was found near his oculomotor nerve, so a cautious biopsy was attempted.

At that point, cancer did not seem like the most likely option, so when the biopsy was unsuccessful, they breathed for a moment. At Sam's six-week post-surgical check, a new scan was completed, and the tumor had massively grown in size. It was then they knew they were dealing with something serious. A new biopsy realized their worst fear: cancer. Beyond that, it was a cancer they had never heard of and was even scarier than their worst-case scenario - it was AT/RT.

Since that devastating meeting where Sam’s family’s lives fell to pieces, they have seen their son defy every odd and fight in ways they can’t imagine. He immediately had surgery to remove his left eye completely, which allowed for total resection of his tumor. They also discovered that he was not affected in his brain or spinal cord - a miracle for sure! Shortly after, he started an intensive chemotherapy regimen and did not slow down even a tiny bit during those five rounds!

Seeing his beautiful blue eye and his adorable blonde curls be sacrificed were some of the hardest days for his parents, but Sam constantly reminds them that he will get a new (prosthetic) eye, and maybe his hair will grow back even curlier like Mama’s or brown like Dad’s—though he hopes it will be his favorite color: blue (keep dreaming, kid!!).

Samuel has now moved on to radiation, and so far, every scan has been tumor-free. "We are so proud of how he has embraced treatment and how quickly he learns about each step of his process, which we believe helps him embrace the treatments instead of fearing them," says his family. He has a long road of maintenance chemotherapy in his future for at least a year, and his family is forever praying that he will continue to defy odds by smiling through treatment and staying tumor-free.

Update on Samuel's 4th Birthday (Oct 7, 2023):

Samuel will be finishing his last few days of radiation as a 4 year old! Then, he will get a well-deserved break to recoup before his next MRI and starting maintenance chemotherapy, which will continue for about a year. Sam was diagnosed shortly after turning 3 so there was a lot of hospital time and scary life changes during that critical age, but that has not stopped him from learning, playing, and growing from a curious toddler into a fun loving and smart young boy!

Update on Samuel's 5th Birthday (Oct 7, 2024):

Sam starts his LAST round of his maintenance cycle today, on his birthday. His scans remain tumor free and the site of his removed eye is stable and even starting to heal itself from radiation damage.  

His family shares, “We are so excited to live life a little more freely without having to worry about low counts, scheduling around chemo, and getting so many pokes. We’re also nervous about being off treatment for the first time since his diagnosis. We know our family and community has him in their hearts and prayers and we are trying to trust that his fight has been enough to keep him safe.”

Update on Samuel's 6th Birthday (Oct 7, 2025):

Sam is growing up fast and officially transforming into a six-year-old! He has now been off treatment for a full year with no signs of recurrence, and his scans continue to show steady improvements in the areas previously affected by treatment.

This fall, Sam started Kindergarten and absolutely loves it—making new friends, learning all sorts of exciting things, and proudly showing off his reading skills. He’s still a big fan of Transformers, Dog Man books, and baking. He’s recently discovered a new love for drawing his favorite characters—a delightful surprise for a child who once swore he wasn't into art!

Sam has enjoyed a wonderfully healthy year with no complications or scares. As he turns six, he’ll have another surgery—this time to repair radiation damage in his eye socket in preparation for a prosthetic. While his family is not thrilled about more surgery, they are excited for him to finally get his new eye—something he has talked about ever since the family had to say goodbye to his eye shortly after his AT/RT diagnosis. (Though knowing Sam, he’ll still rock his cool eye patches from time to time!)

This year has been filled with unforgettable moments: his wish trip to Disney, his first time at the beach, learning to ride a bike, finally getting blue hair, visiting Legoland, cheering at baseball games, and so much more. His family shares, “We’re endlessly grateful for every experience, and so hopeful for all the adventures that year six will bring!”