Honored Kid

Sutton Brown

Sutton Brown Kid Photo


Toledo, OH, US


Brain or spinal cord tumor

Date of Diagnosis

May 2021



Treated At

CS Mott Children’s Hospital Promedica Russell J. Ebeid Children’s Hospital Le Bonheur Children’s Hospital Seattle Children’s Hospital Atrium Health Levine Children’s Hospital

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My Story

Sutton was a healthy, happy, boisterous two year old. He loved trains, cars, trucks, sharks, and dinosaurs.  He loved his family, going to the lake, and playground, reading books and watching his "songs."  About a week before his third birthday, he 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 3rd 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 we were sent to Dr. Carl Koschmann at Mott Children’s Hospital in Ann Arbor Michigan. We consulted with Dr. Koschmann who told us it didn’t look like classic DIPG, and we spoke to Dr. Hugh Garton who told us he would do a biopsy. He explained that brainstem tumors cannot be surgically removed due to the incredibly delicate nature of the brainstem. On May 10th, Sutton had a biopsy. 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. 24 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 6 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 his mommy an hour there and back each day in the hopes of helping his boo boo go away. 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. We found that Dr. Derek Hanson in Hackensack New Jersey was an expert on this type of cancer, so we followed his treatment protocol. 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 4 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 - 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. He often was seen skipping and running through the hallways pretending to ride on a train and having us all watch out for the pretend traffic. During this time, we discovered there was a doctor in Memphis Tennessee, Dr. Paul Klimo, that removed the same type of ETMR tumor from another child’s brainstem. We excitedly sent his scans to him, but unfortunately, Sutton’s chemo treatment had made his tumor more hazy and less defined. This crushed us because we could have possibly gotten it removed at the beginning of treatment if we had known. Sutton was discharged at the beginning of April, 2022. He was back to his old self (with the addition of hearing aides, leg braces, and no hair). We celebrated his 4th birthday with all his friends (he had a shark theme). His tumor had shrunk by 50%, and we were planning to go to Charlotte North Carolina to start a clinical trial medication called DFMO. He started the medication and we were getting so excited for our normal, happy life to resume.  Make a Wish even granted Sutton a beautiful playset for our backyard.  In June of 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 8 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 30th, 2022, Sutton had another MRI and major facial surgery to try and stop his mouth and nose wounds from continuing to grow. They had to sew his bottom lip to his top lip which made it very hard for him to eat, drink, and talk.  We also sent his scans once more to Dr. Klimo in Memphis to see if the border of his tumor was clear enough to have it resected. Sutton flew to Seattle to have his CAR-T cells collected, and during this trip, he lost the ability to walk. We also found out that he was accepted by Dr. Klimo to have his tumor removed! So, we flew to Memphis with the excitement of finally getting this monster removed from his head. 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.  Dr. Klimo was able to remove 100%  of his original tumor. 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, to open his eyes, to eat, and to swallow.  He had to get a feeding tube put in and needed help manipulating his hands to play with his favorite toys.  He needed help opening all his Christmas presents, but, he was very excited to get lots of play food and kitchen sets because making people food in his little kitchen was his favorite.  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 "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.

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