By Nicole Pierson
Gavin Pierson is a 7-year-old patient at Children’s Hospitals and Clinics of Minnesota. His journey began on April 7, 2012 after an unexpected brain tumor diagnosis. Gavin is a tough, brave boy with hopes and dreams. These dreams start with one day winning the battle against his brain tumor, who he has named Joe Bully.
As we approach Gavin’s 17th surgery, we do so with sadness, hope, determination and caution.
Gavin’s journey has been filled with countless ups and downs. Last year, we hit an “up” when Gavin was granted compassionate use of a drug called Palbociclib, which is made by Pfizer. He’s the only child in the U.S. using the medicine, and it has stopped the progress of his fast-growing, benign tumor.
Then in October, Gavin was the first patient in the Upper Midwest to undergo a laser ablation surgery at Children’s for his brain tumor. He’s the only person in the country to have a mature teratoma successfully ablated with this laser technology.
After the procedure, Gavin did well and quickly bounced back. He was on the mend and doing well until Nov. 20, when we brought him into the ER. Gavin had complained of tingly feelings in his arm and leg along with sudden speech problems. The right side of his face was paralyzed, and he suddenly couldn’t speak coherently. Once in St. Paul, a CT scan showed no abnormalities, and Gavin was admitted overnight. The next morning, an MRI showed a serious and extensive blood clot in many veins in his head. The clot could have caused a stroke, bleeding, coma or death. He was put on blood thinners and remained hospitalized for almost two weeks.
Gavin was tested for a blood disorder that might be causing the clots, but nothing was found. The clot is not believed to be a result of the laser procedure, but instead has become a separate hurdle that has developed slowly over time. Given that this clot is the second Gavin’s had in two years, he will likely be on blood thinners for a long time.
After gaining strength, energy and improving his physical abilities, Gavin required steroid treatment to decrease the blood clot swelling. While the steroids are necessary, they have so many negative side effects, including weight gain, muscle weakness and mood change.
As we fast-forward to today, we’re thrilled to share that Gavin has improved significantly and is ready to continue his battle against Joe Bully with another laser ablation procedure. This amazing technology allows the surgeon to repeat treatments without a limit. Our hope is that this surgery will knock the bully down further than before. Of course, our hope is that it will eliminate the last of Gavin’s brain tumor, but there are no promises. Gavin’s medical team can’t guarantee this will be the last as Gavin is the first for so many things.
Although it would be nice to have a predictable disease, having options and hope is better than the alternative. A year ago, our hope was slipping away. Today, we have a medicine and a surgical technique that complement each other. And we are thankful for the amazing care Gavin has had and continues to receive at Children’s.
If you can believe it, Gavin is excited for surgery. He wants to win this epic battle against Joe Bully and he has an amazing army supporting him. He inspires everyone around him, and he has inspired us as his parents to fight harder even when it seemed we had no options left. He’s overcome obstacles that only superheroes could have toppled and he’s amazed his doctors and care team over and over again. Gavin’s inspiration drives all of us to continue fighting and never give up.
As we approach Gavin’s 17th surgery today, we do so with sadness, hope, determination and caution. Sadness because we never imagined this life for our son – who was perfectly healthy for almost six years; hope that this procedure will cure him and give hope to other families in the present and future; determination to beat Joe Bully; and caution because we have to tread carefully on this journey, making all the right moves and not losing sight of our goal.
This is our story. Thank you for being a part of it.