The air was fresh with the promise of spring when my 15-year-old son stepped out of his boat after crew practice, and we headed off for a routine MRI for daily headaches.
The technician called me to the back room and I was told they had discovered a mass in my son’s brain. It was removed two days later. We discovered it was a grade 4 tumor called medulloblastoma.
We did not return home for almost a month. Alex received intensive physical, occupational and speech therapy while at the hospital. After discharge, he received six weeks of brain and spine radiation, and he was given over a year of aggressive chemotherapy.
May is Brain Tumor Awareness Month. I wanted to share my now-16-year-old son Alex’s story to highlight the importance of awareness in the hope of motivating and inspiring action.
We have spent the better part of one year in oncology units and have met so many extraordinary children and families that battle brain tumors. We have learned their battles are fierce — but so is their determination. We have discovered that even when that determination is Herculean, it may not be enough for this formidable war.
Many brain tumors are inoperable because they wrap around the brain stem. One particular tumor, called DIPG, is terminal upon diagnosis.
Primarily a pediatric brain tumor, DIPG is of particular interest to researchers because many in the medical community believe that a cure for DIPG will unlock a cure for all cancers.
However, pediatric research only receives 4 percent of the National Institutes of Health’s (NIH) budget, an infinitesimal fraction of what other cancer research receives.
Alex has received the most grueling of radiation and chemotherapy regimens, and we have learned there is much to be done in terms of discovering less severe and debilitating treatments and mitigating effects.
There are amazing, new possibilities in the areas of immunotherapy and genomics. The Children’s Hospital of Philadelphia, where Alex has received the very best care and treatment, is pioneering research in this area.
The promise this research holds reminds me of that fresh spring day in April when Alex stepped off his boat. He missed that spring, but I imagine a day where a malignant brain tumor diagnosis does not inspire fear and hopelessness, but promise and resolve.
Alex’s particular tumor, though aggressive, was caught early and has a good prognosis. His last chemotherapy treatment is May 20 and will be the cause of much celebration among our family and friends.
We will breathe in the sweet spring air like we never have before. But our wish is that anyone who receives a brain tumor diagnosis will know that we will not let them down, that we are fighting for research funding, and that we will be working toward a cure. The potential of a new spring day should never be forfeited or go unnoticed; it should always be ripe with expectation and filled with hope anew. Laura Muñoz
Oceanport