My name is Marleigh, and I have a very rare and aggressive brain cancer called Atypical Teratoid Rhabdoid Tumor (ATRT). Here is my story told by my mommy, Rebecca, and my daddy, DeAngelo.
On Wednesday, January 19th, 2022, we brought our 3 year old daughter, Marleigh, to Children’s Hospital of Alabama for what we thought were lingering issues of COVID. During a bedside neurological exam, her left leg was weaker than her right, and she has developed a stutter in the last two months. The doctor ordered a CT and found out that night that our precious baby had a 2cm mass in the very middle of her brain. At that time, we were admitted to special care, and our journey began. She had an MRI of her head and spine the next day, followed by a biopsy and the insertion of an Extenal Ventricular Drainage system (EVD) on Friday the 21st. On the morning of January 26th, she was taken into the operating room for a 6 hour surgery to complete a posterior fossa craniotomy to remove her tumor. Dr. Rocque and her medical team were able to safely remove what proved to be 100% of the tumor. Dr. Dhall at Children’s of Alabama let us know on January 27th that her biopsy diagnosis was ATRT and to discuss the process to start ACNS 0333 protocol. Beginning February 8, 2022 Marleigh endured 2 rounds of induction chemotherapy, 3 rounds of high dose consolidated chemotherapy with a bone marrow transplant after each of those cycles. After her body recovered enough to survive radiation; she completed 6 weeks of focal proton radiation. She finished her ACNS 0333 protocol on September 20, 2022.
Her next MRI is March 20, 2023; we are praying that the results will show No Evidence of Disease. God and her village of family, friends, and supporters have helped her fight through this War. God put us in the right place, at the right time, with the right medical team, so that she can be healed, and she can live out the story He has written for her. We pray that it is His Will that she live a long and healthy life in full remission.
October 20, 2023 - Update on Marleigh's Journey for her 5th Birthday:
Marleigh is turning a whole hand, 5 years old! We are so thankful and blessed to have Marleigh doing so well. Her latest scans are clear, and her next scan will be in November. Marleigh has enjoyed being in school, participating in fun activities, and celebrating one whole year off treatment. She started ballet and tap recently and is so excited to become a big sister in January 2024.