Sterling, VA — Countryside Elementary School fifth grader Michael “Mikey” O’Connell was selected by the Raymond A. Wood Foundation (RAWF) to receive a handheld blood analyzer, a hospital-grade device that is critical to managing a chronic condition called diabetes insipidus (DI). O’Connell suffers from this condition as a result of removal of a craniopharyngioma, which is a benign brain tumor that affects the hypothalamus and pituitary gland.
DI is the inability of the body to produce anti-diuretic hormone (ADH), which regulates the body’s fluid balance. Some brain tumor survivors suffering from this condition also have an impaired thirst mechanism, making it difficult to manage fluid balance resulting in abnormally high or low blood sodium levels. Out-of-range sodium levels may cause seizures or coma and can be fatal.
O’Connell was experiencing seizures from low sodium levels, with one as recent as this past May that caused him to be nonverbal for 10 hours. It took several concentrations of sodium to raise the sodium level in his blood to the normal range.
Unfortunately, blood sodium can’t be measured in the same way that typical diabetics measure blood sugar. Standard blood work in labs takes too long to produce results for effective management of care. This blood analyzer can perform full blood workups in just a few minutes with a small amount of blood. These devices are traditionally used in hospital ERs and urgent care clinics. The devices come with a high price tag and can be difficult to purchase for home use.
“We learned about the monitor from the ER doctor. A monitor at home to measure Mikey’s sodium level regularly would change our lives,” said Lori O’Connell, Mikey’s mother. “We could chart his sodium levels and prevent these debilitating seizures instead of reacting to them.”
The Raymond A. Wood Foundation was incorporated earlier this year with a mission to provide quality-of-life support to survivors of childhood brain tumors. One of the foundation’s initiatives is to provide these devices to patients who suffer from this particular side effect of a brain tumor. Mikey is the first recipient ofthis device from RAWF.
“We were able to raise enough money to the buy the first one ahead of schedule and are thrilled to give Mikey’s family some peace of mind to be able to proactively manage his condition,” said Caroline Coakley, RAWF board member. “The more money we raise, the more families we can help.”
According to the American Brain Tumor Association, Brain tumors are the most common cancer occurring among those age 0-14, and the leading cause of cancer-related deaths in children (males and females) age 0-14. Survivors tend to face many lifelong challenges as a result of treatments including surgery, radiation and chemotherapy.
“Our foundation is working to identify ways to support childhood brain tumor survivors through innovative devices or therapies that may help improve their lives,” said Coakley.
RAWF will present the O’Connell family with the device on August 15. They will receive training and strategies on how to use the device to monitor Mikey’s sodium levels so he can stay healthy and do the things he loves, like playing with Legos and bowling.