Aaron’s Story: Surgery, Chemotherapy and Stem Cell Transplant for Medulloblastoma

“He has a brain tumor.”

Five simple words that, once spoken, can change a life forever. Words that no parent ever wants to hear in reference to their child. This is exactly what Shana faced last summer after taking her 4-year-old son, Aaron, to the Emergency Department at the Philadelphia campus of Children’s Hospital of Philadelphia (CHOP).

Aaron was experiencing various symptoms, including dizziness, head tilt and vomiting. After being admitted to the hospital, a thorough MRI revealed that he had an abnormal growth in his brain. 

Alexander Tucker, MD, a neurosurgeon with CHOP’s Neuroscience Center, performed a gross total resection in which he removed the tumor. After the procedure, Aaron showed no neurologic deficit. A biopsy revealed a diagnosis of medulloblastoma, a malignant pediatric brain tumor in the cerebellum, a part of the brain involved in muscle coordination, balance and movement.

“Medulloblastoma is not cured with surgery alone,” says Kristina Cole, MD, PhD., Aaron’s attending physician in the neuro-oncology section of CHOP’s Division of Oncology. “The treatment plan chosen — with guidance from Aaron’s parents — involved three 21-day cycles of chemotherapy, followed by three additional cycles of chemotherapy requiring stem cell transplant.” 

Care regimen for medulloblastoma

Dr. Cole worked closely with her Division of Oncology colleagues, fellow Rachel Hurley, MD, Ph.D., and Jessica McWhorter, CRNP, an inpatient nurse practitioner, to provide care for Aaron, measuring his progress with MRIs every step of the way. Jason Freedman, MD, MSCE, an attending physician in Oncology/Stem Cell Transplant and CHOP’s medical director for Inpatient Oncology, oversaw the stem cell transplant portion of treatment.

“Aaron handled everything like a champion,” recalls Dr. Freedman. “Even when not on service, I would visit his room, and he always had fun things to show me. He made a ton of artwork that decorated his room (and eventually my office). His superhero capes and trademark monster slippers were always a source of amazing conversation, and he was never afraid to show me his ‘tubies’ (gastric tube and central line). He seemed proud of his body and his progress.”

Aaron’s resilience was remarkable, especially given his rigorous treatment protocol. His treatment included brain tumor resection, placement of a shunt to drain excess fluid from his brain, three cycles of high-dose chemotherapy and three stem cell transplants for an intense seven months.

“His treatment journey was anything but easy, and at times it was pretty tortuous. One of the hardest things as a parent is to know that the treatment your child needs could also take their life. The doctors were so reassuring to us. They had my child’s best interest at heart through this whole process.”

A supportive community keeps spirits high

Child life specialists and Oncology nurses helped Aaron and his family get through it all, day by day, says Shana. They helped Aaron understand what was happening in his body throughout his care journey, cheered him on as he rode his scooter down the hallway, let him paint their fingernails, and gladly stayed after their shifts to cheer him up.

“They took care of his daily needs at his sickest moments,” says Shana. “They held him while he vomited, they washed his tired body, they cleaned him, cared for him and, most importantly, showered him with love and care. This team loved our boy beyond the call. My son adores them, which, in turn, makes us adore them just as much. When I say we could not have done it without their support and care, I am not exaggerating.”

The community outside the hospital walls rallied around Aaron, as well. In December 2022, while other kids were enjoying the magic of the holiday season, Aaron was preparing to head back to the hospital for a stem cell transplant that would keep him inpatient for another four to six weeks.

The family’s South Jersey community came together to give Aaron a little holiday cheer. They held a "winter wonderland" parade that included members of the Philadelphia Phillies baseball team and the Kisses for Kyle Foundation, a local organization that helps families battling cancer. The parade included lights, holiday music and a visit from the Phillie Phanatic. “Mighty Aaron” even saw Santa and watched his favorite characters from Paw Patrol lead the parade. It was a welcome emotional lift for the boy and his family, says Shana. 

Ringing the bell of cancer-freedom

Despite all he endured, Aaron had an inner strength that proved itself time and time again. On March 22, 2023, after seven months of arduous treatment, he proudly rang the bell, declaring himself cancer-free and celebrating his discharge from CHOP’s Blood and Marrow Transplant Unit. A huge crowd of supporters was there to cheer him on, including his neurosurgeon, attending oncology physician, nurse practitioner, nurses and child life specialists who provided his care throughout his journey at CHOP.

The gratitude Aaron’s family feels toward the CHOP care team is reciprocated by those who cared for him.

“As a provider, it was inspiring to see the incredible tenacity of this little guy — always positive despite the numerous challenges he was facing,” says Dr. Freedman. “He taught me so many lessons and reminded me about perspective and always trying to see the positive side of challenging situations. He has made me a better person and doctor, and for that, I am forever grateful.” 

Aaron continues to be monitored by CHOP specialists and followed for hearing loss and expressive language delay. While no one can say whether the cancer will come back in the future, Shana finds comfort in the words her son recently shared while riding in the car.

“No matter what happens, we have the best of the best on our side,” said Aaron to his mom. “We will be OK. We are in the best hands.”