On December 11, 2021, Finn, a six-year-old from Spokane, WA, was airlifted from Sacred Heart ER to Seattle Children’s Hospital due to the complex growth of a tumor in his brain. which was causing vision loss and impaired brain function.
The tumor was determined to be a craniopharyngioma and the Seattle team of doctors and surgeons were able to relieve the pressure the next day and remove ~98% of the tumor two days later. When the tumor was removed, so was his pituitary gland. This is the body’s hormone “control center.” As a result, Finn’s life is forever changed and his family now replaces all of his hormones with medications which requires attention and adjustments regularly.
“One of the greatest challenges of Finn’s resulting medical conditions is that his body can no longer regulate the fluid and sodium levels on its own,” said Finn’s mother, Karina. “Every day we measure his fluid intake and urine output to attempt to keep his body in a regulated zone.”
The condition, diabetes insipidus (DI), occurs when the brain is impacted and can no longer produce the hormone vasopressin which regulates the body’s fluid balance. This can be tricky to manage particularly in pediatric patients in the early months after tumor treatment.If fluid balance is off in the body, sodium levels can go too high or too low which can be fatal. One of the ways to attempt to judge fluid balance is measuring ins (what he drinks) and outs (what he pees) but this method often can be inaccurate. The most accurate way to get a sodium level is through a blood test which can only be done in a lab so Finn and other patients like have to visit the lab sometimes every few days.
“Unfortunately, due to the rareness of the condition, the only standard way to tell if his sodium levels are in range is to go to the lab to get a blood draw (often getting multiple pokes that fail) and wait hours for a result that will have changed in his body due to intake/output by the time we get the results,” said Karina.
Fortunately, the Raymond A Wood Foundation (RAWF) has made it possible for children like Finn to obtain a handheld blood analyzer. These are hospital-grade devices that can run basic metabolic panels with a few drops of blood in just a few minutes. Off label use of this device allows for caregivers to get a sodium reading and adjust medication and fluids to keep sodium in range. Karina reached out to the Raymond A. Wood Foundation and worked with us to raise funds for a handheld blood analyzer raising 50% of the cost of device which was matched by RAWF.
“The ability to get a sodium level at home with results in a timely matter will make a huge difference in our ability to care for Finn and minimize future hospitalizations,” according to Karina.
The funds raised were matched from funds in the RAWF ROAR for Rare campaign which prioritizes four programs including the handheld blood analyzer program. These devices have proved to be critical in the management of care for patients like FInn.
Find out more about the ROAR for Rare campaign and how to provide support for these programs to help brain tumor survivors like Finn.