Carson was born hypotonic and started receiving physical therapy at 4 months of age. He was referred to neurology at that time as well. He was pretty much blind and his head circumference had increased 9 cm since birth. All body scans were completed and the MRI of his brain showed some changes within the cerebellum that would explain his conditions and symptoms.
His ventricles were measuring larger but hadn’t changed since in utero. Hydrocephalus was always in the back of our minds! Our physical therapist noticed his soft spot was bulging (not a lot but it was harder than usual). We saw our regular pediatrician who also noticed it. We headed to Children’s in Pittsburgh thinking we were getting a shunt placed; our neurologist walked us through the process and what to expect. “It is a pretty quick turn-around – pack bags for one night.”
Waiting in the ER seemed like forever. We couldn’t get an MRI to compare like images but the CT scan showed a much greater volume of spinal fluid. He was taken about 4 a.m. for the MRI. I was giving him a both when the doctors walked in and asked us to have a seat. I was bathing my son and listening until he interrupted me and pulled two chairs out for us to “sit”. That’s when my heart hit the floor. “Your son has brain cancer.” DEAD.
How could that be? A 10-month-old baby who has yet to experience the world or do anything wrong. This couldn’t be happening to MY son. That night I drove home to pick up Carson’s then 2-year-old big brother and our journey began.
Brain surgery resulted in a 50% resection. Carson had 3 rounds of conventional chemo and 3 rounds high dose chemo with stem cell rescue. Hearing tests, x-rays, echocardiograms, EKGs, port surgery, PICC lines, MRIs, CT scans – you name it, we’ve had it! He was TPN dependent for 8 months.
Carson had a second resection and 6 weeks of proton radiation therapy at CHOP (4.5 hours from home). He finished on March 20, 2018. We traveled home during the BIGGEST snowstorm of the year.
Since then his scans have been stable. He could barely hold his head up when diagnosed. He can now sit on his own, climb the stairs and go down independently. He army crawls everywhere but can crawl small distances when directed to. He is working on standing and loves to walk (with assistance). We have quite a road ahead of us but he is thriving! He is a true warrior! The strongest kid I know! He loves his baby sister more than anything, maybe less than chocolate milk (only a tiny bit). He is a stubborn almost 3-year-old and I am so thankful for everyone who has prayed, helped in any way, and continues to support our hero.