Jack

A Message of Hope on Jack’s First Birthday from his parents.

Jack was born on July 6th, 2024, and just three days later, our world was turned upside down with the devastating news that he had a brain tumor. When we learned that the tumor was ATRT (Atypical Teratoid Rhabdoid Tumor), our hearts sank. At 30 weeks, during his mom’s last ultrasound, there was no sign of anything abnormal. It was then that we understood just how aggressive this disease truly is.

At just two weeks old, Jack began his first round of chemotherapy. After his second round, the posterior fossa tumor was successfully removed. Over the next several months, Jack endured three more rounds of high-dose chemotherapy, three stem cell transplants, and 28 rounds of proton radiation. On March 17th, 2025, he completed his treatment! (ACNS0333)

Today, on Jack’s first birthday, we reflect on how far he’s come. Jack is now participating in Dynamic Movement Intervention therapy, which has been helping him reach important milestones like rolling over, scooting across the floor, and, hopefully soon, sitting up on his own.

We’re sharing this story not only to celebrate Jack but to offer hope to other families facing ATRT. None of this would have been possible without the incredible care Jack received from his doctors and nurses. His surgeon said Jack is “standing on the shoulders of giants”—a reference to the advances in ATRT research and treatment over the past decade. We know that organizations like Hope4ATRT have played a key role in making those strides. Jack had his second post treatment MRI on July 1st, 2025. There is still no evidence of disease.

As we move forward, we don’t know exactly what the future holds for Jack, but we are determined to live each day to its fullest. Our family is stronger and more grateful than ever. Jack is deeply loved by his parents and his two older sisters, and as much as we adore him, we take comfort in knowing that he is loved even more by God. Through His grace, we are confident that all is well.

“I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.” – Isaiah 42:16 NIV

January 2026 Update

Right around Jack’s first birthday, doctors caught a rhabdoid tumor in his kidney. It was very small, and they were able to successfully remove it with a partial nephrectomy. Following surgery, Jack had to start chemotherapy again. Although he was scheduled for ten rounds, he became very sick after the third round, and it was determined that he wouldn't be able to handle further chemo.

Jack spent 40 days in the hospital starting at the beginning of October, but we are happy to share that he is now doing really well! It has been four months since his last chemotherapy treatment.

We have been waiting for approval to start Jack on Alisertib. While it is still in clinical trials, we finally received FDA approval yesterday! To add to the good news, Jack had his brain, spine, and abdominal MRIs yesterday, and they all came back clean—No Evidence of Disease! We are so hopeful that this new medication will help keep any other tumors from forming.