Barrett

Barrett’s Journey: From Alabama to a Miracle in Memphis

Submitted by his mom, Calah

The Early Signs & Trusting My Gut

In mid-December of 2024, I noticed Barrett’s eyes would roll, ever so slightly, when I would pick him up from lying down. I messaged these concerns to our pediatrician, and he told us we would keep an eye on it. Come the beginning of January 2025, I noticed his face was starting to very subtly droop a little bit. It wasn’t really noticeable to many people but me. We had an appointment that following week, but I had a gut feeling something was off. I thought (and was hoping) it was Bell's palsy.

On Sunday, January 12th, a snowy weekend in Alabama, I took him to the pediatrician while my husband was away on a golfing trip. I addressed these concerns, and they agreed it could be Bell's palsy, but for their peace of mind, they wanted us to go downtown for scans. I could never thank these doctors enough. They didn’t brush off my concerns or send me home to “wait.” They heard my concerns and did something about it.

A Life-Changing Diagnosis

I drove to Children’s of Alabama with Barrett, and my dad met me in the ER. We were immediately put in a room and scans were ordered. Scans showed a 2cm mass on the left side of his cerebellum, right next to the brain stem, with cranial nerves intertwined. We were set up for surgery there for that following week but decided to get a second opinion from Dr. Paul Klimo at Le Bonheur/St. Jude. He read Barrett’s scans and got us in that next week. On January 19, 2025, we took off to Memphis, TN, not knowing we wouldn’t see Alabama again until December.

Surgery Day & The Long Road in the ICU

We met with Dr. Klimo the night before, and he went over every single tiny detail about the surgery and what he was going to do, down to the details. We woke up January 21st and headed to Le Bonheur with Barrett. The surgery was a very, very long 12-hour day. We kissed him goodbye that morning and didn’t see him until 8 pm that night. 

Surgery was great; recovery was rough. Barrett’s tumor was in a very sensitive location with cranial nerves intertwined within parts of it. Dr. Klimo removed 90% of it but had to leave some tumor residue because the nerves were sticking to it, and he didn’t want to cause permanent damage. He was amazing; we couldn’t have asked for a better surgeon. Truly a Godsend. We believe if it were anyone else, Barrett might not be here. 

Barrett came out of surgery unable to swallow, with left-sided facial palsy more prominent, left-side vocal cord paralysis, and limited use of the left side of his body. We were in the Le Bonheur ICU for two weeks, then transferred to the St. Jude ICU. We had many setbacks after surgery, and there were a few moments where we thought we would lose him. But he would pull through every time. Before transferring to St. Jude, he had a trach and g-tube placed.

The Battle & A Miraculous Response

We started our treatment protocol on February 4th: four rounds of induction high-dose chemo (methotrexate, vincristine, cyclophosphamide, and cisplatin). After just two of those rounds, we had scans in April 2025, and they showed that he was completely NED (No Evidence of Disease)! Chemo wiped out the rest of that tumor. Our oncologist said that typically ATRT doesn’t respond this quickly to chemo, so this was very good news. Scans were beautiful but showed hydrocephalus. We went back to Le Bonheur so Dr. Klimo could put a shunt in, then transferred back to St. Jude to finish his two more rounds of high-dose chemo. Scans again in June were NED, thank you Jesus!

We were set to start proton radiation in July. Our oncologist came to us in June and said she would like to do IVT chemo in his shunt during radiation to protect the spinal fluid during this process since we were not getting systemic chemo. We agreed and went back in to get a programmable shunt (our previous one was non-programmable). 

Radiation started July 2nd, with IVT topotecan every Friday during radiation. Radiation ended August 13th, and during the 4-week break between radiation and scans, Barrett got IVT topotecan two times a week. Scans were in early September, and they showed NED. THANK THE GOOD LORD!! These scans were very important because a lot of kids will metastasize during radiation. Our oncologist said these scans, plus the first scans post-treatment, were the two biggest scans to get past.

Remission & Coming Home

We finished our protocol with consolidation chemo (IV topotecan + cyclophosphamide + IVT topotecan) and scans on November 26th once again showed NED. We were set to FINALLY go home with a baby in remission. All the glory to God! We went home December 7th, 2025. 

Thriving & Looking Forward

Barrett is just thriving at home! Follow-up scans on February 25th showed he is still NED. 

We will go back to St. Jude every three months from here on out.

We found out in April that he carried the germline mutation, but no one else in our family did. This means he will get closer monitoring until he is past age 5! Because of the tumor location, Barrett has some cranial nerve deficits. We have been seeing so much nerve regeneration just since being home! We are hoping and praying it continues. He is thriving with all of his therapies and early intervention at home. He is such a happy and sweet buddy!!

He loves throwing and rolling balls, race car tracks, books, and any and everything big sis is doing! Pretend play with his kitchen is one of his favorites, as well as sliding down his slide! He loves chasing our doggy, Tucker. Going on walks in the sunshine is also a favorite! He is climbing on any and everything and is so close to walking independently. He is such a social little boy who will hug and snuggle with everyone. 

We are so proud of him and how far he has come! We are hoping and praying for clear scans forever!

Follow Barrett on his Facebook page - Brave Bear’s Journey 🧸