Raymond A. Wood Foundation Tackles Survivable Brain Tumors That Pose a High Price for Survival Amy Wood, Executive Director, Raymond A Wood Foundation United States
Alex was also adipsic in that he lost any sense of thirst from hypothalamic damage, so we could not rely on thirst as an indicator of his hydration level. Additionally, he developed panhypopituitarism which is loss of endocrine function, adrenal insufficiency, and hypothalamic obesity (HO) which is excessive weight gain combined with an insatiable hunger.
I
t was a regular Thursday morning in May 2015. My then four-year-old son Alex was up and ready for library day, his favorite day of the week in pre-kindergarten. While I was having my coffee and getting awake, something about Alex’s left eye caught my attention. It seemed to be off-center, almost crossed inward. We have a history of lazy eye in the family, so I thought maybe I hadn’t noticed it before. Nothing else seemed wrong, so off he went to school, and I made an eye doctor appointment. But as the day progressed, I started getting messages from his teacher. “Have you seen Alex’s eye?” she said. “He seems to be having trouble with his balance.”
A shocking diagnosis We went to see Alex’s pediatrician that afternoon, and he immediately instructed me to take Alex to the nearest children’s hospital, which was three hours away. He simply said it could be a brain tumor or brain cancer. That was so incredibly shocking to hear, and I will never forget that moment. It was the most harrowing next 24 hours — the drive to the hospital, the first MRI and then the news that Alex had a mass in the middle of his brain causing hydrocephalus. They moved him to the pediatric intensive care unit at the hospital that night, and early the next morning, they took him into surgery. 88
Brain Tumour
Challenges for optimal care
Amy Wood, Executive Director and Co-Founder of the Raymond A Wood Foundation based in Ocean City, Maryland, USA
The neurosurgeon told my husband, Shawn, and me that it was a benign tumor believed to be a craniopharyngioma and that it was fully removed. Hearing the tumor was benign seemed like a relief, but as the hours and days unfolded after surgery, we soon learned that we had a long road ahead. As a result of the tumor surgery, Alex developed diabetes insipidus (DI), the absence of the antidiuretic hormone vasopressin due to pituitary damage, which made it challenging to manage his body fluid balance and keep his blood sodium level in a safe range. This kept him in the hospital for six weeks. When we asked how we measure his sodium at home, we were quickly made aware that this is a rare condition and that at-home testing of blood sodium is not available — unlike typical diabetes where you can test glucose.
After discharge, Alex was getting lab work done up to four times a week where we waited hours for results. His veins were blowing out from constant poking. We were measuring how much he drank and how much he urinated to calculate fluid intake. He had three seizures due to low blood sodium that put us on medical flights to the children’s hospital, where it took him days to recover. I felt strongly that this situation was not sustainable, and we needed a solution. We discovered a hospital-grade handheld blood analyzer that could do full basic metabolic panels at home, with a finger stick producing accurate results in less than five minutes. There were significant roadblocks to getting the device — the price tag is around US $12,000 with test cartridges and the fact that it would be used off-label where there was really no prior experience with using it for this purpose. But we sensed it would be a game-changer. With the help of Alex’s pediatrician and support from our local community, we raised money and purchased one.
