Anthony James Pappalas, son of Katie Gaskin and brother to Luke and Daniel, fought a courageous 19-month battle with the DIPG monster.
Anthony was a brilliant boy filled with positivity, compassion, smiles, laughter and love. Anthony loved learning about space and everything NASA, when he grew up he wanted to be an astronomer. Anthony loved life, even until the very end of his short life, he smiled and his positivity radiated, it was contagious.
In the spring of 2015, Katie noticed Anthony’s eyes crossing and he was a bit unsteady on his feet. As part of his routine Kindergarten eye exam, he went to the eye doctor who sent him off to a specialist. He was then recommended to have an MRI to rule out anything abnormal within his brain.
On July 23, 2015, our lives were forever changed. The MRI showed a large mass growing on Anthony’s brainstem. He was sent to Christ Children’s Hospital where he was admitted to the PICU and underwent an extensive 5 hour MRI of his brain and spine.
The next day, July 24, 2015 those awful and devastating letters that are forever engrained and burned into our brains were given. DIPG (Diffuse Intrinsic Pontine Glioma). That small pale colored room where the oncologist told us that Anthony had only 9-12 months to live and that radiation was the only way to temporarily treat his tumor. The room was spinning, the wind was knocked out of Katie, words a parent should never hear in regards to their child’s life. How are there no treatment options for this? We were crushed, and absolutely destroyed.
Three days later a shunt was surgically placed in Anthony’s head. That weekend our family came together and named ourselves Anthony’s Avengers because this situation called for Super Heroes with our Iron Man, Anthony, leading us.
We found Dr. Stew at Lurie Children’s Hospital in Chicago. He had what it took to be an Avenger. Him and Anthony had a very special bond with one another, Anthony never minded clinic days because he could see Dr. Stew and tell him jokes and laugh. Dr. Stew was compassionate, yet brutally honest and upfront about facing this terrible DIPG monster. There were not many options, none that could cure our Iron Man, but we remained hopeful.
Anthony quickly became part of a radiation/chemotherapy trial. He underwent 30 rounds of radiation treatment over a 6-week period, combined with oral chemotherapy. He did this like a true and brave superhero. He never once needed anesthesia. Anthony knew what he needed to be done, as scared and frightened as he was, and he did it with indescribable perseverance and grace. In October, an MRI showed that his tumor had shrunk 12%, it seemed like a small amount but in the DIPG world this was good news.
After almost 6 months of the trial that had him in and out of the hospital having blood transfusions, hair loss, fatigue and weight gain from the steroid that prevents swelling in the brain, Anthony was taken off the trial. Again, we were devastated and back to square one. His tumor was stable, so it was decided to let him live life to the fullest, exactly how he wanted to. We filled the future months with unforgettable things: NASA stations, Gatlinburg, his grandparents’ house in Florida, Lourdes, France in a quest for a miracle, events that community members held in honor of Anthony, everyday fun with his brothers and 8 cousins who were more like siblings to him. We all helped carry out his passion for life, we made memories that will be carried with us forever.
Anthony went almost 8 months with a stable tumor and minor symptoms. He was off the steroid that had given him terrible side effects as it helped with the brain swelling. It was as if Anthony was going to be that less than 1% that might just beat this monster. He started showing minor symptoms of progression so we put him on a new and very hopeful trial that came out of Stanford University. Anthony took an oral pill twice a day, he was on this trial for 2 cycles/2 months. The day before Thanksgiving of 2016, Katie received the call from Dr. Stew that Anthony’s tumor had grown over 20%. He was immediately taken off the trial. We felt pure devastation, but we were never going to give up, we were never going to let DIPG win.
Again, back to square one. Only this time, things were different. Anthony’s eye was crossed almost always, he was constantly drooling, falling over, having severe double-vision, headaches and dizziness. It was the nightmare every parent of a DIPG child faces…progression. We needed to act quickly.
Anthony was put back on the steroid to alleviate his symptoms, which also came with side effects of its own such as weight gain, muscle weakness and intense appetite and hunger. We heard about a very new approach to treating DIPG, it was an IA (intra-arterial) chemotherapy treatment. This trial only previously had 2 children on it, it was risky, but made sense. Oral chemo treatments were unable to get through the BBB (blood brain barrier). IA used a catheter aiming chemo right at an artery that lead into the pons of the brain stem. We met with the doctors at John Hopkins in Baltimore. After intense thought, conversations, research and faith, we decided this was our only hope at saving Anthony. Our superhero was onboard, he wanted to fight, he wanted to live.
On February 2, 2017 Anthony underwent the IA chemotherapy procedure in Baltimore. The procedure went smoothly, Anthony did great of course. Besides soreness, our superhero recovered amazingly. For two weeks, Anthony was about the same as before the procedure.
Almost two weeks before his next procedure was scheduled, Anthony’s symptoms were progressing rapidly. He could not attend school at all, he had trouble walking, was drooling, having headaches and severe double vision. Despite what he was experiencing and what his body was doing to him, Anthony never lost his beautiful smile. He never lost his sense of humor. He never lost his love for his family, his friends or for his passion to live life to its absolute fullness.
Anthony was put on hospice in his home on March 4, 2017. We postponed his next procedure in Baltimore (in hopes that one day we would make it back there). Anthony wanted to be home with his family. He asked for his mom, brothers, cousins, grandma and papa, aunts and of course his famous FUNcles.
On March 9, 2017, surrounded by love and his family, our precious sweet boy took his last breath on this earth. He was 7 years old.
Anthony’s smile, positivity and love has had an impact on hundreds. He brought not only his family together, but also the community throughout his fight against DIPG. His family is dedicated to defeating DIPG in his honor and in honor of all of the warriors that fought this monster.