Samuel

Nothing can slow this kid down, not even cancer!

Around Christmas of 2022, we noticed that Samuel had a slight droop in his left eyelid. We took him to our amazing pediatrician right away who decided to send him for imaging, just to be safe. On that CT, they found a pea sized mass 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 wasn’t successful, we breathed for a moment. At his 6 week post surgical check, a new scan was completed and the tumor had massively grown in size. It was then we knew we were dealing with something bad. A new biopsy realized our worst fear- cancer. Beyond that, it was a cancer we had never heard of and was even scarier than our worst case scenario - it was AT/RT.

Since that meeting where our lives fell to pieces, we have seen our son defy every odd and fight in ways we can’t imagine. He immediately had surgery to remove his left eye completely which allowed for total resection of his tumor and we 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 5 rounds!

Seeing his beautiful blue eye and his adorable blonde curls be sacrificed were some of the hardest days as his parents but he reminds us 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 but he hopes it will be like 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. He has a long road of maintenance chemotherapy in his future for at least a year but we are 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.”