Each month, the Children’s Brain Tumor Tissue Consortium highlights the stories and contributions of families, foundations, and researchers to find cures for pediatric brain tumors. If you would like to share your story as a guest blogger, please email firstname.lastname@example.org
By Laura Muñoz, Co-founder of the Alexander Muñoz Memorial Fund
“Sprinkled everywhere, like sugar…”That description lives with me, twists at my soul, brings me to ugly tears in the car hidden behind the mask of dark sunglasses. These innocent words were gently expressed by our 16-year-old son’s oncologist, and unveiled how insidiously his “curable” brain cancer had aggressively returned and advanced. It was the moment of the point of no return. It was the time to shakily sign tear-soaked “Do Not Resuscitate” forms. It was the afternoon I had to look into the sweet brown eyes of my cherished child and tell him that there was nothing more that the doctors could do for him.
His heartbroken dad, two beloved brothers who were 15 and 20, and I brought Alex home to hospice.
What we have learned about pediatric brain cancer from the time of Alex’s initial diagnosis has profoundly altered our lives.
We had no notion that children’s cancers are an entirely different set of diseases than adult cancers.
We were completely unaware that the National Institutes of Health only provides approximately 4 cents out of every dollar to research childhood cancer. Four cents.
We were crushed to discover that brain cancer is the number one cause of death by disease in children.
We were shocked to uncover that although we are given such successful survival rates for children, these numbers only reflect 5 year survival as they do in adult populations. We are talking about young children, and the average age of a childhood cancer diagnosis is 6 years old.
However, new discoveries and groundbreaking methods are truly forging frontiers and deservedly raising hope. With current efforts underway to share data and facilitate collaboration among scientists, a dawning light is piercing the early morning skies.
The day after Alex was told that cancer would take his life, he asked us to help others. He had no other wish or request. It is our privilege in this life to amplify his selfless voice and ask for the help that is so deeply needed.
We work so that no other family should endure this agony and this loss.
Love and hope should be “sprinkled everywhere, like sugar…” Not cancer.