Did you know that today, in the USA, 46 children will be diagnosed with cancer? And 7 will die? That 1 in 5 children diagnosed with cancer will not survive 5 years beyond diagnosis? And some childhood cancers still have 50% or lower 5 year survival rate?
This is Sammy's Story.
Wednesday, October 19, 2016, started out like every other weekday for 4 year old Sammy. Plan of preschool, followed by lunch, then 4 hours of ABA (autism therapy), martial arts class, dinner, bath, and bedtime. Busy day. But that is not what happened. At pickup from preschool, his teacher informed me he had just vomited. Which was a change from his normal early morning vomiting routine. We were waiting to be seen by a GI specialist, since July. So we went with it. We stopped at a store on the way home. Unloaded Sammy and little brother, Logan. Sammy immediately started vomiting. So loaded back up and head home. Upon unloading at home, Sammy was stumbling like a heavily intoxicated person. Something was very, very wrong. A phone call snd call back later, we were loaded back up and heading to Phoenix Children's Hospital.
Sammy walked into the ER forever changing our lives. He was diagnosed with a golf ball sized brain tumor in the cerebellum region of his brain. Sammy was later diagnosed with medulloblastoma, a form of pediatric brain cancer. Our life has never been the same.
On October 21st, 36 hours after being admitted he had a 10 hour craniotomy to remove his tumor. Sammy had a severe side effect that left him without all his functions, called Posterior Fossa Syndrome. We never saw our child walk again. His speech was never the same, he never sang again. He never wrote his name again, as he couldn't hold a crayon. He ended up with a g-tube for feedings, as he lost his ability to swallow. He spent 246 days inpatient receiving cancer treatment, followed by 30 days of inpatient rehabilitation. He spent Halloween, Thanksgiving, Christmas, New Years, his 5th birthday, Valentine's Day, and Easter all in the hospital. Most of them spent in isolation. Sammy had 5 rounds of high dose chemotherapy, and a stem cell transplant protocol. We saw our child suffer in ways no parent should ever have to witness their child suffer.
On June 22, 2017, Sammy finally came home. Life was different. He was in a wheelchair. Still had gross and fine motor function impairments. He still had a feeding tube. Hearing aides as chemo caused hearing loss. Glasses for vision issues. He had to wear a mask for risk of catching any sickness. But his scans were clear.
Then came September 1st, 2017. Another ER visit. We went for a possible shunt failure, and our world fell apart for the second time in a year. Sammy relapsed. The cancer had spread. And he was diagnosed as terminal. Our son at 5 years old. Ten and a half months into treatment. Our son, our Sammy, was diagnosed as terminal. No cure. No hope. Just death.
It shook us to our core. We got 6 more months with our son through the help of palliative treatments. He got a few good months, filled with wonderful memories.
On April 1, 2018, Easter day, we took Sammy to Ryan House, a pediatric hospice care facility. We could no longer handle his round the clock care on our own and needed support. And Ryan House provided exactly that. Support for Sammy, and support for our whole family as we focused on Sammy's final days.
Sammy passed away on April 12, 2018 after battling cancer for 541 days. He is forever 6 years old.
Thank you for supporting Sammy. His journey. His memory. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids a chance at life. A life past 5 years that is without long term issues.
#hopeforsupersammy #forevergotyoursix
