Matthew is the 3-year-old youngest son of Jayson and Dawn Hart. Jayson is a 9th grade geography teacher and Dawn is a stay at home mom. Matthew also has an older brother and sister, Henry 7 and Libby 5.
Matthew was diagnosed with a brain tumor on July 8, 2014 at Seattle Children’s Hospital at the age of 27 months. This journey began at the age of 6 months, when he could not eat baby food. It started back up at the age of 20 months when he was still not walking. Matthew now walks, but every step takes all his focus. He uses a wheelchair for distances much more than around the house or church.
Two weeks after his diagnosis, his family moved to the Atlanta area. Doctors were confident the tumor would not grow or affect the length of his life. Three months later, in October of 2014, the tumor had grown three times its size. His biopsy in November diagnosed him with terminal high grade glioma astrocytoma of the brain stem, cerebellum and spinal chord and he was given six months to live. But they also found an extremely rare mutation called BRAF. There had been a couple successful cases of a melanoma chemo drug working on children with low grade brain stem tumors, so it was decided that Matthew would try the drug, even though his tumor is high grade. He had a G-tube installed for taking the drug in December and began the drug on December 13, 2014.
Just two weeks later, on his Make A Wish trip to Disney World, he had an extreme reaction to the sun from the drug and was hospitalized. He was pulled off the drug to recover, only to land back in the hospital less than a week later due to rapid growth of the tumor and was given 6 weeks to live. He was put on hospice and then endured nearly 7 weeks of radiation appointments to buy back time to try the BRAF drug. His April 2015 MRI showed that radiation was a huge success and it was determined that he could wait to restart the BRAF drug until an MRI showed growth again. On July 10, 2015 his MRI showed enough enhancement that the BRAF drug needed to be started, a difficult decision because it is not known whether the rapid growth of Dec/Jan was from going on the drug or from coming off of it. And this time with the drug, there will be no sunshine exposure for Matthew, a tough situation for an active little boy, and with no end of treatment date set (it is a long term drug).
On July 27, 2015 Matthew began his twice a day G-tube chemo treatments of three adult melanoma pills. Matthew’s family is a beautiful witness of trusting the Lord through tough times and finding joy in all circumstances. As frightening as restarting the drug is, they are also excited to be blessed with a mutation that gives them an additional chance of curing Matthew. They are adamant that if the drug doesn’t work and they say goodbye to Matthew, that it will be painful yet precious, because Jesus has already saved our little Matthew.
Matthew has continued treatment and faces new challenges such as seizures. We encourage you to read more about their journey and hope on their website www.ourlittlematthew.com
