OCEAN CITY — The Raymond A. Wood Foundation (RAWF), founded in honor of local pediatric brain tumor survivor and Ocean City Elementary second grader Alex Wood, named Silas Johnson, age 8, of Cody, WY, its fourth recipient of a hospital-grade handheld blood analyzer critical to managing diabetes insipidus (DI), a chronic condition that affects the fluid balance in the body.
DI is difficult to manage and can result in abnormal blood sodium levels which can lead to extreme medical complications. Johnson suffers from this condition as a result of treatment of a benign brain tumor that damaged the hypothalamus and pituitary gland.
In the year and a half since treatment of his brain tumor and subsequent radiation, Johnson has faced numerous ER visits and med flights to Denver due to issues regulating his sodium. His mother, Chelsea Johnson, says she feels every medical concern stems from Johnson’s sodium balance.
“It is a daily battle,” she said. “We would love nothing more than to monitor his sodium and address it at home as best we can.”
Abnormally high or low sodium can result in seizure, coma or could be fatal if not quickly treated. Due to the rarity of this disease, there is no at-home testing device for blood sodium like typical sugar diabetes, making it difficult for DI patients to closely monitor their sodium levels. Multiple weekly lab visits to monitor this condition can be traumatic for young children and slow in producing results to effectively manage the condition. The handheld blood analyzer provides accurate results within minutes so patients can adjust fluids and medications to keep sodium in the standard range. Unfortunately, it comes with a price tag of $12,000-$15,000 and is not FDA approved for home use.
As part of RAWF’s mission to provide quality-of-life support to pediatric brain tumor survivors and their families, the foundation purchases and loans the devices to qualifying patients whose doctors agree to use it in the care management plan. In its first full fiscal year, RAWF has now provided four analyzers to patients in Texas, Kansas, Virginia and now Wyoming with other patients on the waiting list.
“This machine would help us get a grasp on our son’s body and his diabetes insipidus without going to the hospital on a daily or every-other-day basis,” Chelsea Johnson said.
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, according to a 2016 report by the American Brain Tumor Association. This places brain tumors in children above leukemia for both statistics. Survival rates for brain tumors can vary due to tumor type and other factors including age. Five-year survival rates tend to be highest among younger patients but treatments including surgery, radiation and chemotherapy can put children at greater risk of cognitive deficits and chronic conditions that require lifelong treatment and therapies which can be expensive, difficult to manage and taxing to the patient and caregiver.
In addition to providing these medical devices, RAWF’s other initiatives include sponsoring an online art exhibition entitled “The Art of Surviving,” allowing pediatric survivors and those currently battling brain tumors who use art as a form of therapy to showcase their work. The exhibition showcases various forms of art including paintings, sculptures and photography from as far as the United Kingdom and Cyprus. Work was judged by a panel of professional artists and cash prizes were awarded to the winners.
The foundation is also in the preliminary planning phase of a parents’ conference to be held at Children’s Hospital of Philadelphia (CHOP) and is hosting a survivors’ picnic in Ocean City in the fall.
“We are thrilled at how far we have come in just our first year of work,” said Ellen Waters, RAWF board member. “To be able to help these patients and their families manage this condition or find ways to improve life after treatment is a true privilege but we have much more to do.”
To find out more about the Raymond A. Wood Foundation, visit rawoodfoundation.org or follow them on Facebook. To see the artwork produced by pediatric brain tumor survivors, check out artofsurviving.net.