Sutton was a healthy, happy, boisterous 2-year-old who loved trains, cars, trucks, sharks, and dinosaurs. He adored his family, going to the lake and playground, reading books, and watching his “songs.”
About a week before his third birthday, Sutton started falling down quite a bit. We took him to our local hospital, and they performed a CT scan. The scan showed a worrying spot, so an MRI was performed on May 3, 2021. A tumor was found in his brain stem. At first, we were told it looked benign, but then another doctor entered the room to tell us it was definitely not benign, it was DIPG, and we had about 9-12 months. He told us to not even do a biopsy…. just make him comfortable and maybe do some radiation to buy us more time.
Thankfully a third doctor came in to tell us to get another opinion, and Sutton had a biopsy on May 10th.
In the waiting room, our neurosurgeon warned us that the cancer was so aggressive that it was actually multiplying while he was looking at it under the microscope. This made him think the chances of DIPG were actually more likely. We were devastated.
We spent the night in the ICU, and when we went to go home the next day, Sutton could barely walk due to the aftermath of the biopsy. Twenty-four excruciating hours later, the neurosurgeon called me early in the morning and told us the wonderful news… that it wasn’t DIPG or even a glial cell tumor. It was a neuro cell tumor, but we would have to wait about six weeks until the results came back from the National Institute of Health.
In the meantime, Sutton spent 5 days a week for 6 weeks undergoing radiation. Every day, he had to be put to sleep, and every day, we had to wait for him to recover out of anesthesia where he would scream and cry. His Grammy would drive him and me an hour there and back each day in the hopes of helping his boo boo go away.
Sutton and his nurse
We received the results of his tumor type. Sutton had ETMR (embryonic tumor with multilayered rosettes). This is an extremely aggressive type of tumor with a very low life expectancy. This devastating news crushed us once again.
After Sutton was finished with radiation (he had already gotten a port placed in his chest at this time), he had an ommaya reservoir placed into his head. He then started a grueling four rounds of chemo and 3 back-to-back stem cell transplants. Sutton spent the greater part of the fall and winter of 2021 in the hospital, very sick, undergoing chemo. He then spent January through March in the hospital with his stem cell transplants and he maintained his sense of humor, desire to play, and wonder for the world around him.
Sutton was discharged at the beginning of April 2022. He was back to his old self (with the addition of hearing aids, leg braces, and no hair). We celebrated his 4th birthday with all his friends. His tumor had shrunk by 50%, which allowed him to start a clinical trial medication called DFMO. We were getting so excited for our normal, happy life to resume.
Sutton being silly
In June 2022, I noticed Sutton’s eyes were not aligning correctly and he giggled at me that he could see “two mommies,” which told me he was experiencing double vision. He had an MRI which revealed his tumor had grown by 25% in just eight weeks. He started intrathecal chemo and was approved for CAR-T cell therapy in Seattle.
Throughout the summer, his little nose and mouth started to deteriorate for unknown reasons which caused us to go to lots of other appointments. His tumor continued to grow, so he completed two weeks of radiation.
On September 30, 2022, Sutton had another MRI and major facial surgery to try and stop his mouth and nose wounds from progressing. They had to sew his bottom lip to his top lip which made it very hard for him to eat, drink, and talk.
Sutton flew to Seattle to have his CAR-T cells collected, and during this trip, he lost the ability to walk. We then flew to Memphis with the excitement of finally getting this monster removed from his head – a doctor there removed the same type of ETMR tumor from another child’s brainstem. The night before surgery, we got a call that his tumor (which has stayed in place for almost 2 years), has now spread to his spinal cord and two other spots in his brain. We were completely devastated once more.
Sutton resting
We made our way back to Ohio where we waited to restart chemo and radiation. He had major facial surgery again to separate his bottom and top lip. While undergoing chemo, Sutton almost died from hydrocephalus and had to have an emergency shunt placed in his brain. He underwent radiation, and during this time, we watched as our brave, happy, funny little boy slowly started fading away. He lost the ability to talk, open his eyes, eat, and swallow. He had to get a feeding tube and needed help manipulating his hands to play with his favorite toys.
During these last months, Sutton continued to hug us constantly and tell us he loved us. Even when he couldn’t talk, he still gave us a “thumbs up” to let us know he was ok. In early February, our team let us know that this was the end, that our little boy was not going to make it. We had to place him in hospice. He went into the hospital having difficulty breathing, and our little angel took his last breath on February 26, 2023. He waited until Mommy and Daddy went to get lunch and it was just his Grammy and him when he passed. We think he knew what was coming and didn’t want us to see him like that.
Our wish is that very soon, no more families or children will have to endure the pain that Sutton and all the people who love him went through. We hope that his story can help other kids in the future and that childhood cancer can be a thing of the past. We love you Sutton… always and forever.
Sutton with his mom and dad during the holidays
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