Matthew is a joyous and wild, friendly little boy who loves meeting new people and giggling with everyone he sees. I always say the best way to sum up the early years of our journey is that he didn’t eat cake on his first birthday. He wasn’t walking yet by his second birthday. At the age of 27 months, an MRI found a tumor on his brain stem and cerebellum. They said it was likely the type of tumor that wouldn’t grow so we didn’t hesitate to move when Daddy got a teaching job across the country in Paulding County, GA.
Just three months later, in October of 2014, the next MRI showed growth and we were told Matthew had six months to live, unless he happened to have a specific mutation that his oncologist was looking for to try a new adult skin cancer drug. We consented to the biopsy that had been heavily warned against while still at home in Seattle, and Matthew had the mutation! A chance to beat high grade brain stem cancer!
He quickly had stomach surgery to install a feeding tube for administering the giant adult pills and this new chemo began. But two weeks later, on his Make A Wish trip to Disney World, he was hospitalized for an extreme sun reaction. He was pulled off the drug to heal, having learned the drug does not mix with UV rays. One week later, we were in the trauma room of the ER as Matthew’s little body began to shut down. We were heartbroken. The tumor had rapidly grown and we were now being told he had six weeks left with us.
Though we had previously decided against radiation, we decided to began it right away, in hopes of buying time for another try at the drug. Radiation was such a success that we did not have to restart the drug until another MRI showed enhancement the next July (2015). This time we knew to avoid sunshine and we knew not to come off of the drug, for fear of more rapid growth. On October 28th, Matthew’s MRI showed the tumor had drastically shrunk! We are so hopeful that the drug will continue to maintain the tumor’s size.
We are praying the effects of the drug will be manageable. The drug causes extreme steroid-like behavior and Matthew can’t go outside during the day. Every week we learn more and more how best to parent a special needs child. The tumor, drug, and radiation effects are a daily battle, especially Matthew’s balance and breathing. Matthew is currently fighting pneumonia and is in his sixth month fighting C. diff, but we are so thankful to have a chance at this drug for however long it works for. We have even talked about coming off of hospice.
And we were able to celebrate Matthew’s 4th birthday! We are very appreciative of every extra minute we get with Our Little Matthew.
Every child who has been diagnosed with childhood cancer inspires us to Rally On to find better treatments with fewer long-term side effects and, ultimately, cures. Please join us in the fight against childhood cancer by making a donation or setting up your own Rally fundraiser today.
