Nathan loves music. He plays his ukulele and sings every time he’s on his way to the procedure room for an LP. He’s a big Scooby Doo fan, he loves Goosebumps, superheroes and anything really scary. When admitted he plays pranks on the nurses with toy spiders, whoopie cushions and surprises them with an impromptu snowball fight. He has a wicked sense of humor. He loves video games, swimming and camping. He thinks farts are the funniest things, he’s really all boy.
When Nathan was born he was diagnosed with Down Syndrome. They gave me a list of medical risks associated with Trisomy 21, Leukemia being one of them. It was something I feared since the day he was born. Nathan presented with occasional low grade fevers for no obvious reason, night sweats, leg pain, and petechia. I knew what it was before the blood results came back.
Nathan spent over 300 nights in hospital during frontline treatment. He has had many lumbar punctures, bone marrow aspirations, port accesses, pokes, blood transfusions, platelet transfusions that caused an allergic reaction, IVIG treatments, a Gtube so he could be nourished, many doses of chemotherapy and antibiotics, he was bed ridden for almost a year. He has slowly regained the ability to walk. He’s gone through all this and he faces every day with a smile. He brings laughter and joy to every day. His resilience is incredible, I am in awe of his strength and character. I am so blessed to be his mom.
Nathan’s diagnosis has been pretty difficult. We’ve missed out on some pretty big milestones for our older children. We’ve had to and still need to keep Nathan pretty isolated to keep him healthy and safe. Big family gatherings have been put off until he is strong enough, so our holidays are pretty quiet. It’s been isolating, Nathan feels it too he keeps asking to go to the hospital for pokes just so he can see others.
It’s been a tough go since Nathan has been diagnosed, but regardless of how bad it’s got he reminds us that laughter is the best medicine and he keeps us laughing every day. He is the strongest, bravest person I know. He’s definitely stronger than me, I’ve cried every night since he’s been diagnosed.
Hope session by Laura Snyder Photography | Facebook