Age: 9 Years Old
Diagnoses: Medulloblastoma (April 2019)
Medulloblastoma relapse (June 2021)
In early 2019, our 7 year old son Gabriel had been having intermittent episodes of vomiting in the middle of the night with no other symptoms – no fever, no stomach aches – from January to the end of March. The same week that we saw a GI specialist, he had three more episodes of vomiting and on Sunday was crying that his head hurt, and he was stumbling. We took him to the emergency department, where they automatically did a CT scan because of his headache. When the doctor came back in the room, I just knew that something was wrong, and the words I can still hear – “We found something on the scan.” Our life completely changing in a moment, with a few simple words. Gabe was immediately transferred to a pediatric intensive care unit, which began our 82-day stay at Advocate Children's Hospital in Oak Lawn.
The waiting for information was the worst – what type of tumor, how invasive is it, did it spread, can it be removed? The surgeon was able to remove the entire tumor. We eventually found out his tumor was a medulloblastoma, one of the most common types of pediatric brain tumors. It did not spread, but it affected Gabe in other ways. After the initial surgery, Gabriel was diagnosed with cerebellar mutism and posterior fossa syndrome – he had no movement on the left side of his body and was unable to speak or swallow. This was a terrifying time for us, being told that this usually resolves, but it could be days, weeks, even months. There was no way to know except to wait and see.
After only a couple of weeks, Gabe began to speak and started to be able to swallow again. He underwent another procedure to have a ventriculoperitoneal (VP) shunt placed to help relieve pressure on his brain. Once he was medically cleared, he was admitted to the inpatient rehab unit. He underwent another procedure to place a port in his chest so he could receive his treatments. He began daily intensive physical, occupational, and speech therapy, as well as radiation and chemotherapy treatments. By the time Gabe was discharged at the end of June, he was taking steps on his own, swallowing just about everything safely, and starting to take care of his own needs.
Once he came home, Gabe began day rehab at Shirley Ryan for three hours, three days per week to gain strength, coordination, and confidence in his abilities – this he participated in for about a year and a half. He continued to visit the hospital on a weekly basis for treatment, tests or monitoring labs until May of 2020 when his chemotherapy treatment was finished. We celebrated the small and large victories, but the fear is always there whenever he had an upcoming MRI or bloodwork.
In June of 2021, just one year after completing his treatment cycle, Gabe’s MRI showed a tumor regrowth. We were devastated once again. He had come so far in therapy and was even learning to ride a two-wheeled bicycle. In August of 2021, he had another surgery to remove the tumor and it was again discovered to be a medulloblastoma relapse. This time, the tumor removal significantly affected his coordination and balance, where he could not even sit up on his own. He spent 46 days in the hospital to participate in intensive inpatient rehab again and is participating once again in day rehab.
We think this bicycle would be so helpful for Gabe because it would let him be a kid who could ride a bike with his siblings safely without worrying about falling all the time. It would give him the opportunity for more independent movement and a way to gain strength and endurance appropriate for his age. Therapy is wonderful, but typical activities make Gabe feel like a kid instead of like a sick kid.