Contributed by Eugenie Hsu, mom to Alex, craniopharyngioma survivor and Raymond A. Wood Foundation Board Member
Alex riley, 10 days after craniotomy to remove a craniopharyngioma
On August 23, 2011, Alex, our then-8-year-old son was diagnosed with a brain tumor called craniopharyngioma. We were told that although he would likely survive the surgery, he would be left with chronic medical conditions in its aftermath including “diabetes insipidus, panhypopituitarism, hypothalamic obesity…” I couldn’t absorb any explanations about medical terminology because my head was reeling from the shock of being told that my little boy had a brain tumor. The neurosurgeon explained the location of craniopharyngioma by using a human head model and I watched in horror as he removed the outer skull and then the parts, piece by piece by piece, until he reached the very core of the brain. The deeper his hand reached into the model’s head to remove parts, the more unnerved I became as I realized that this tumor was lodged in a very precarious area of the brain.
On September 8, 2011, Alex underwent a 14-hour brain surgery followed by a 6-week stay in the pediatric intensive care unit. As harrowing as it was to go through the brain surgery and long hospitalization, little did we know that it was the easiest part of our journey and only the tip of the iceberg of what we would face.
Ten years have passed since his diagnosis and surgery and indeed, we have faced challenges on our journey that we never could have imagined the day we brought him home from the hospital. We have somehow risen to the dizzying challenges of taking care of our medically fragile child and we have navigated the twists and turns of all of his special needs to date, successfully enough to celebrate the 10-year marker post-diagnosis and surgery.
ALEX, 18.5 years old.
If you have been down a similar road, you know that being a parent to a child with life threatening, chronic conditions, disabilities, and other special needs is challenging, but that some of the hardest parts have to do with feeling alone. Well meaning friends and family are unable to truly understand our struggles and even the best medical professionals on the planet are unable to provide solutions to so many of the problems we face.
Who, then, has the ability to help us find the answers to our problems?
In rare diseases, we must turn to the people who have the most knowledge, experience, and skin-in-the-game for answers: the patients and caregivers…US! We owe it to ourselves and to our loved ones to harness our collective wisdom, experiences, resources, and motivation to be warriors and win the fight against brain tumors and the havoc they have wreaked in our lives.
Fortunately, Raymond A. Wood Foundation (RAWF), an advocacy organization for brain tumor families, exists for the sole purpose of improving the lives of hypothalamic-pituitary brain tumor survivors through access to education, technology, and evolving treatments. RAWF needs you to join our fight so that we can help ourselves. If you are like me, then nothing is more important than your health or the health of your loved one. If you are like me, you are willing to do whatever it takes to fight for answers to yet-to-be solved problems for the sake of your/loved one’s health. By becoming a member of the RAWF, you are investing in the fight for quality-of-life of hypothalamic-pituitary brain tumor survivors.
Let’s join together so we can fight the good fight. Will you join me?
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