This summer, Raymond A. Wood Foundation provided Henry Cloninger, a 6-year-old from Godfrey, IL, a blood analyzer to help his family manage his medical care at home. Henry was first diagnosed with a craniopharyngioma at age 3 where he underwent a resection to remove the tumor. While suffering the typical side effects of the tumor treatment, Henry had bounced back from surgery and his conditions were manageable until a new growth was found in 2017.
This past January, Henry underwent transphenoidal surgery to remove the tumor and faced several post-surgical complications including cerebral spinal fluid leaks at the surgical site and and an infection in his shunt which had to be removed and reset. Henry, being older and more aware of his circumstances, struggled with the hospital experience and is suffering with PTSD and anxiety, common side effects for children undergoing intensive medical treatments.
The medical trauma made it challenging for Henry’s family to manage his diabetes insipidus, a rare disease caused by damage to the pituitary and/or hypothalamus by the tumor or treatment where the brain does not secrete the anti-diuretic hormone causing issues with blood sodium and electrolytes levels. Extremely high or low sodium can cause seizure, coma or could be fatal. Henry’s sodium levels were erratic requiring continuous lab draws to monitor the numbers.
“Since we’ve been home, it has been a struggle to get to the lab to have blood tests because of Henry’s extreme fear and anxiety, “ said Jean Knox, Henry’s mother. “We are confident the i-STAT will be life-changing for us.”
Henry has been working through counseling, physical therapy and, most importantly, getting back to being a kid again. We appreciate your support to enable the gift of the blood analyzer to help to keep Henry out of the lab, out of the hospital and onward to first grade.