Adventures of Super Sammy: MEET MY WHY

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH.

MEET MY WHY.

Sammy was diagnosed with medulloblastoma, pediatric brain cancer, on October 19, 2016. That day started like any other day of a 4-year-old in preschool. But that day changed our lives forever. He spent the next 246 days inpatient at Phoenix Children’s Hospital. Surgeries, chemotherapy, stem cell transplant, and rehabilitation. All in hopes our child would survive. Thrive.

Sammy was finally discharged on June 22, 2017. Over 8 months after he walked in the ER. He came home a different child. Now in a wheelchair, on a feeding tube, in need of lots of support to conquer everyday life. He suffered posterior fossa syndrome, a side effect of his craniotomy. He suffered a hearing loss, a side effect of chemotherapy. Our child was no longer the child who walked in the hospital 246 days prior. But he was home.

September 1, 2017. 10 weeks after he was discharged, with clear scans free of cancer, we learned his cancer was back. With vengeance. Sammy was diagnosed as terminal. He had new growths in brain and spine. At 5 years old, less than 11 months from diagnosis, we were told our child had no cure, no hope, no chance to survive.

We hit pause. Took our family to Disneyland, before we made any decisions for what was next. We needed a moment for what was to come. Then back to the reality of our nightmare of childhood cancer. We took every day, five minutes at a time. We opted for radiation. Our best chance at giving him quality of life and giving us time.

We spent the next 6 months living life as best we could. Making memories. Hoping. Praying. That he could beat the odds. We did palliative chemotherapy in hopes to slow things down, and planned to stop, if his quality of life declined.

Sadly, in March he suffered complications from hydrocephalus. Negative pressure hydrocephalus, that was unable to be controlled. We made the decision to place Sammy on hospice care and stop all treatment. On April 12, 2018, at 6 years old, Sammy took his last breath and went into the arms of Jesus.

Somehow, here I am. A year and 5 months, since Sammy died. Our life forever changed by the words "we found a tumor" on October 19, 2016. Somehow this is my reality. This is my life. A child who fought cancer. Who died. Our family who is forever missing our child in every moment. And for Logan forever missing his best friend, his big brother. There is no going back. Only forward. Looking for Sammy everywhere, and no where. My life forever changed by childhood cancer. Scarred. I am not the person I was before, how can I be? I am missing part of my soul, my child. I have been through trauma and living through unfathomable grief. A grief with no name. No word to describe who I am as a mother, who lost. I am not a widower, or an orphan. I am a mom whose child died in my arms. And I feel his missing weight in them everyday. Forever changed by childhood cancer. I wish it was different. I wish this was not my reality.

My child deserved more. Deserved better. Sammy deserved a chance to fight and live. Childhood cancer needs more awareness, more funding and more research. Because this is not okay.

Help us DO MORE by donating in honor of Sammy to Layla's Legacy. This foundation specifically supports medulloblastoma research and supports families fighting childhood cancer.

Samuel "Sammy" Puma
1.16.2012 - 4.12.2018