In the whirlwind of doctors’ visits, treatments, and hospital stays, Gavin’s family found themselves navigating a tumultuous journey they never expected. From the initial shock of a brain tumor diagnosis to the relentless battle through surgeries and treatments, their resilience was tested in ways they couldn’t have imagined. Yet, amid the chaos, they found moments of strength, unity, and a newfound appreciation for life’s simplest joys. As they embraced their new reality, they learned to treasure each moment with their son, understanding that life’s fragility demands a shift in priorities and a deepened sense of gratitude.
Written by Gavin’s mother, Stephanie Prince
Gavin had barely turned 7 years old when he started having vomiting episodes. The first incident happened at a friend’s house in February 2016. Mom and Dad just thought he ate too much junk food. A week later, it happened again at school. This time, his parents thought he had just run around too much in PE. The episodes were happening uncontrollably at least once a week. The first pediatrician Gavin saw said that he had severe allergies to the change in weather. The second one he was taken to (his actual pediatrician) had Gavin do some reflex testing and ordered an MRI of his head, but he said we would have to wait for insurance approval, which could take up to 2 weeks. At this point, the vomiting was happening every 3-4 days. The following day, Gavin had another episode at school. While Gavin’s dad took him to a third pediatrician, his mom was on the phone trying to get an MRI ordered sooner and thinking of other places to take him. Stephanie, Jeff, and Brendan took Gavin that night to an urgent care facility where the nurse on staff could do a CT scan. An hour later, results came back that Gavin had a 4cmx4cmx4cm mass at the base of his brain and that he would need to be admitted to a hospital immediately. Unexpected news like this does not process fast enough and Stephanie knew something was truly wrong when she saw Jeff break down in tears.
He was admitted to UMC Medical Center PICU Wednesday night, April 13th. Thursday morning, the family was met by a neurosurgeon who said that the brain tumor removal surgery was scheduled for Friday the 15th. In the weeks to follow, doctors were preparing Gavin and his family for future radiation and chemotherapy treatments. He had a total of 3 surgeries in the four weeks he stayed at UMC and lost 12 pounds due to vomiting, recovery, and loss of appetite. Stephanie and Jeff took turns staying around the clock with Gavin, along with some much-needed help from both grandmothers. While Jeff spent the majority of the time with Gavin in the hospital, not able to use the room’s shower or toilet facilities, Stephanie would wake up early mornings, drop Brendan off at school, spend 45min-1hr with Gavin at the hospital, go to work, revisit on the way to pick up Brendan from after school care, go home to tend to little brother, and repeat the cycle the next day. Because of the severity of his condition, the brothers were not allowed to see each other for the first two weeks. Both became very somber and lonely. At one point, Brendan asked Stephanie, “Mommy, is it going to hurt when I get sick?”
When Gavin was released a month later, he was very frail and lost most strength in his left arm and leg. He needed assistance getting up, sitting down, and walking. He was put into physical and occupational therapy, which he did twice a week. He missed over a year of school, including all of 2nd grade. Though Stephanie and Jeff did the best they could between appointments to home-school Gavin, there is a reason that they are not teachers.
Gavin has been through a total of 30 radiation treatments, nine in-hospital chemotherapy treatments, and weekly in-clinic IV chemotherapy doses from May 2016 to June 2017. He’s also been hospitalized for fever, severe dehydration, and two blood transfusions during that time. He’s had at least 6 MRIs, a handful of CT Scans, and even an X-ray to continually make sure there is no residual tumor remaining or spreading that first year after diagnosis. There were countless sleepless nights of vomiting from the chemotherapy medication and radiation. Stephanie remembers one night just holding him and crying on the bathroom floor after he was sick. Other side effects included insomnia and severe tiredness. Gavin had his final in-hospital chemotherapy treatment on June 14, 2017. The entire nursing staff made signs for him and cheered him on as he left.
Gavin was cleared to return to school and advance to 3rd Grade in August 2017. He had his port central line removed on November 22nd, 2017. Two years after his tumor removal surgery, a Q-tip-sized hole appeared at the top of his scar. It would close and scab over, then reopen. His neurosurgeon at the time performed another surgery to “clean up the area.” Unfortunately, this did not work, and Gavin had another surgery a couple of months later with his neurosurgeon and a plastic surgeon. They discovered two types of bacterium, and Gavin was put on antibiotics. He continues to have issues with his scar completely healing, and the family is currently talking with doctors about other solutions. He has annual follow-up MRIs to make sure the tumor has not returned. As side effects from the chemotherapy and radiation, Gavin also meets with an audiologist every year for slight hearing loss. He sees an endocrinologist every four months to monitor and adjust his at-home daily injection of growth hormone therapy because he does not meet the average growth of other kids his age.
For those families whose child has been recently diagnosed and asking what kept us going, you just do. When it comes to your child’s health, safety, and life, that’s all you can do. You’ll feel helpless while being pulled in so many different directions, but you have to keep going for them. Pay very close attention to what the medical staff and facilities are doing. And never be afraid to ask questions, no matter how silly they seem. We had a couple of instances where doctors and nurses would have messed up Gavin’s treatment if we had not spoken up. One time, they would have given him the wrong IV chemotherapy dosage if we had not said something. Another time, they had the wrong number of treatments completed. If you have to, keep a journal of procedures, appointments, the ups and downs, and any milestones.
We can honestly say we have a new perspective on life. We used to be the work, work, work family. Family vacations and outings with the kids rarely happened because we had big plans and goals. We have learned to slow down. That work is work, but time with your children is priceless because you are not guaranteed tomorrow. We take more trips (even if it’s just a day outing) and try to experience more things than we used to. In all honesty, this journey will never end, and you’ll have to accept the new “normal” because you will never be able to go back to the way things were. But hopefully, it will calm down and smooth out enough that you’ll finally feel like you can breathe.
With Sincerest Regards,
The Prince Family