Teddy loves super heroes. He loves cars (hot wheels everything), monster trucks, soccer balls, and he loves going to baseball games and of course, the Boston Red Sox. He absolutely adores the beach and water and finds it very therapeutic. And lastly he is obsessed with goats and cows and everything farm. But, mostly obsessed with goats. He loves dogs and puppies as well and dreams of one day getting to kiss a dolphin.
Teddy was a medical mystery and stumped many doctors but an oncologist eventually told us she suspected a rare form of marrow failure (Myelodysplastic Syndrome). Teddy soon lost his ability to walk, developed seizures, lost weight rapidly, and developed pancreatic insufficiency, intestinal malabsorption, and developed a 12 week fever recently which the ER thought was meningitis but then concluded it was likely cancer. I reached out to ST. Jude due to his rare form of pediatric MDS (only 20 cases in the United States, approximately) and they immediately accepted him. After more testing, his marrow came back as hypoplastic and dysplasia and he has rapidly become sicker. His marrow function went from 90% functional to 60% functional in a year. Teddy has spent most of his life in the hospital and has endured over ten sedated procedures, including emergency brain surgery when he was only a year old. He is headed to St. Jude in September where he will receive a life saving Bone Marrow Transplant.
Cancer has completely changed our life. Instead of getting to see Teddy (and his brother Calvin) be normal three and four year olds, we forgo buying a home, any vacations, any fun trips, and more because we practically live at the hospital. My days are filled with doctors and watching my sweet toddler cry during a spinal tap instead of watching him be a wild toddler running at the playground. He is my inspiration though. Both my boys are- they endure five hour infusions, millions of needles and yet, they smile through it all and find joy in each day. They are fighters and while I wish we had a family life where my child didn’t have a fever every day and slept 18+ hours a day, as a family, we’ve learned to cherish each smile, each giggle, each hug, and even moments others take for granted like when he colors on the walls. Because one day, I might not have a little guy being naughty coloring on my walls and secretly I almost never want to clean those walls.
I’d say one of the hardest parts about this journey is that to most people who just glance at Teddy, he looks healthy (still has hair and smiles all the time). Many strangers don’t realize he’s sick and make statements like “you shouldn’t let him be lazy in a stroller, make him walk”! It’s hurtful because if they only knew what this sweet boy goes through every week. Cancer affects every child and every family uniquely.
Teddy was supposed to pass numerous times. He was supposed to never walk or eat or be developmentally on target with peers and he’s defied it all. And I hope with his fiesty spirit, he will beat this too! He is a real life superhero.
Hope Session by Lisa Marie Photography | Instagram | Facebook