Gavin & the Dragon
The Everett Daily Herald, 2014
Four-year-old Gavin Mayes, of Monroe, WA, was diagnosed with Pre-B-Cell Acute Lymphoblastic Leukemia on March 15, 2013 and has received 16 blood transfusions. Eight months prior to his leukemia diagnosis, doctors told his parents that Gavin is on the autism spectrum. While many of their friends are single and starting careers, Gavin's parents Ken, 27, and Charlene, 24, are learning to navigate the medical world while juggling work and the schedules of three kids. Gavin has a brother, Koen, 7, and sister Lucy, 3.
The Mayes family hosted a blood drive on Wednesday, September 11, 2013 at Cascade Community Church in Monroe, Washington to help increase the blood supply at the Puget Sound Blood Center. Gavin has had 16 blood transfusions since his diagnosis that helped to save his life.Charlene sits next to Gavin as he receives his chemo infusion at Seattle Children's hospital, September 27, 203. The infusions can take anywhere from one to four hours. Gavin had to be at Seattle Children's every day for the first month of his treatment, then once a week for the next four months. The hospital is about an hour away from the Mayes' home in Monroe.Charlene holds Gavin at the hospital after the tube is removed from his chest port, September 27, 2013. "Watching your child suffer is the worst thing a parent can be asked to do," says Charlene, "I would have given anything to just tell him I'm helping you." The treatment process has become part of Gavin's routine. Routine and structure are important for any child, but especially one with autism.They make him feel safe.Gavin reads a book at home with his mom, Charlene. He loves books and is currently reading at a second grade level. Because he had to take medication so often at home and has trouble taking them orally, Gavin had a permanent nasogastric tube or NG tube in his nose during the first eight months of treatment.Gavin watches cartoons at home. He has a high-functioning form of autism but was mostly non-verbal at the time he was diagnosed with leukemia. He can get very locked into specific shows, characters or video games and tends to speak in movie quotes. Gavin's parents say that his autism can make the leukemia more difficult at times, but can also make things easier for him. "In a way, it's a blessing that he's a little oblivious," says Ken, Gavin's father, "he never asks questions like 'Am I sick?' or 'Am I going to die?'" Ken reattaches Gavin's NG tube after it was yanked on when he was playing with his brother and sister. If it comes all the way out, they have to take Gavin back in to the hospital to reinsert it.Charlene relaxes in the kitchen after finally getting the kids to bed.Charlene walks Gavin (right) to the bus stop to send him off to school, with Lucy, 3, (second from right) and her nephews in tow. Charlene often babysits her nephews during the day. Gavin spent six months out of school before returning to his autistic preschool class in November 2013.Gavin waits to go to recess at school, February 13, 2014. He returned to his autistic preschool class in November 2013 after a six-month break. He loves school and is at the top of his class.Ken gives Gavin his nightly chemo pills. He is over half way through his three year treatment program and in remission. He takes five different kinds of medications at home during the week and only needs to go into the hospital once a month now.Koen, 7, plays with a styrofoam sword as Ken works on his computer, September 21, 2015.Charlene tucks Lucy into bed as Ken tucks Koen and Gavin into bed. Juggling hospital visits with the schedules of three kids under the age of seven has been chaotic, but they try to remain positive. "We don't have time for nonsense and negativity," says Ken. The family is expecting their fourth child in March 2015.