Our Warriors Who Inspire Us


Sammy Valdez Drake

Location

Canada

Type

DIPG

Diagnosed

February 28, 2023


Story

Sammy was a cheerful and rambunctious soul. He had a vocabulary of 24 words at twelve months old, and got the hang of a pedal bike on his first attempt at age 3. He loved trains (wooden, electric, and real), biking, racing around playgrounds, jumping on trampolines, playing with his big brother, and taking pictures of “beautiful things”.

In early February 2023, Sammy was suddenly fatigued. He had occasional strong stomach aches; one morning he vomited upon waking. Two GPs and an ER doctor told us that his symptoms were nothing to worry about. Still, we had an ongoing feeling of unease. On February 26th, Sammy told me he didn’t want to step off the sidewalk curb as he was worried that he would fall. Three weeks prior he was racing down concrete slopes at the bike park. The next morning, we took him back to the ER where a CT scan revealed that Sammy had a large tumor on his brainstem that was blocking his cerebral spinal fluid from draining properly. The increasing pressure was causing his symptoms. We met with oncology and neurosurgery and were told Sammy’s diagnosis was a cancer called DIPG. Nothing we can write can really express the shock and pain of being told that your child, who only a few weeks prior was happy and healthy, will likely not survive until their next birthday.

There is no known environmental or inherited cause of DIPG and there is no treatment. In most cases it starts with a single base-pair error in the DNA coding for a single type of histone protein in a cell’s nucleus. The median survival period is 8-10 months and 90% of children die within 2 years of diagnosis. Children remain cognitively intact but the growing tumour interferes with signalling to the body and they gradually lose the ability to control their limbs, sit up, or speak. Families are offered palliative radiation therapy which helps most children regain function for a number of months before the cancer inevitably grows back. Sammy lost the ability to sit up or walk by late March. Despite our hopes and his bravery, radiotherapy did not help him regain those abilities.

Like so many families, we scoured the global literature and DIPG support groups for anything that might help our boy. We corresponded with parents around the world, all desperately working against the clock, hoping that they might hit on something that could save their child.

In every period of his illness, Sammy impressed and humbled us with his heart and tenacity. His sole focus during radiation therapy was to get to each of his appointments so that he would feel better. When radiotherapy didn’t help him walk, we watched him grieve for three days and then consciously muster himself. We had a good summer: Sammy played games he adapted himself, read stories, watched hummingbirds, went on picnics, celebrated his brother’s birthday with a treasure hunt, and fed giraffes at the zoo. Beginning in September, Sammy started to lose abilities again. He last squeezed our hand and smiled three days before passing away on October 18, 2023. Over the course of his 8-month battle, we enjoyed his laughter and smile almost every day.

We remember Sammy for his joy and immense courage. We will love you always, Sammy. We are so proud of you.