Silas Johnson, age 8, lives with his mom Chelsea, dad Casey and 1.5 year-old brother Ackley in Cody, Wyoming. Silas was diagnosed with a craniopharyngioma brain tumor in January of 2017 and, as a result, suffers from diabetes insipidus (DI) a condition where, due to injury, the pituitary gland does not excrete the anti-diuretic hormone (ADH), thus making blood sodium levels difficult to manage.
In the year and a half since drainage of the cystic component of the tumor and subsequent radiation, Silas has faced numerous ER visits and med flights to Denver due to issues regulating his sodium. Silas’ mom says she feels every medical concern stems from Silas’ sodium balance.
“it is a daily battle,” Chelsea stated. “We would love nothing more than to monitor his sodium and address it at home as best we can."
Silas enjoys coloring, drawing, playing with play dough, and is just beginning to show interest again in his toys like his hot wheels and airplane collection. His little brother Ackley is like a little therapy session for Silas, taking his mind off of pain or food — he also suffers from hyperphagia, which is a persistent, insatiable hunger as a result of damage to the hypothalamus. Silas enjoys dancing and grooving to all kinds of music and he has passed on his signature moves to his little brother as well. Chelsea says Silas is loved by so many people and as challenging as he may be at times, his personality shines through when he is being funny, loving and sincere with the many wonderful people he has in his life.
When asked how she felt the blood analyzer would help in Silas’ care management, Chelsea says, “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."
The subsequent conditions that result from brain tumor treatments are rare and difficult to manage forcing parents of pediatric survivors to navigate these conditions without a lot of external assistance. The Raymond A. Wood Foundation, whose mission is to provide quality-of-life support for childhood brain tumor survivors and their families, hopes that by having this medical equipment on-hand, Silas will spend less time in the hospital and more time grooving with his baby brother and enjoying the things he loves to do while giving mom and dad some peace of mind.
With your continued support, we can work to find ways to improve the circumstances for kids like Silas, Molly, Sophia and Mikey and all the future families that will benefit. The side effects of a brain tumor like Silas’ has a deep impact not only on the patient but the entire family. Your support helps families better navigate the complexities of care management.
Please consider donating to support these initiatives to help pediatric brain tumor survivors and their families not just survive but thrive.