A Story of a True Warrior – Meet Evie McCollum

Evie McCollum is a our latest handheld blood analyzer recipient. Read her story so beautifully documented and contributed by mom, Tabitha McCollum.

Evie’s life was forever changed on March 27th, 2013. It was on this day, at just 15 months of age, that sweet little Evie would hear the word craniopharyngioma for the first time. Looking back, I can say that in truth we truly had no idea the weight that word would carry.  A few days later, after an extensive surgery to drain the cystic portion as well as place a Ommaya Reservoir, Evie would wake up to a whole new perspective of the world.  Evie woke completely blind, no shadows or light perspective at all.  

While in recovery she would also experience her first sodium related seizure. Her sodium had jumped into the 170’s in just one hour. We did not know it at the time, but this horror would become an event we would have to relive over and over again, a common fear for all children diagnosed with DI. We were able to come home with a long list of medications, a “hat” to measure output, and an emergency syringe of steroids that we would learn very quickly just how important this was.  Evie would go through two rounds of interferon therapy before being told the word “stable” for the first time.  As a parent of a child with craniopharyngioma you learn that the word “stable” is the best you’ll ever hear as so many of these children never hear the word cured.  

Evie would remain “stable” for the next 5 years. In those years as Evie learned how to navigate through this new normal, she would go on to learn braille and take her first steps with her cane she lovingly named “Gracie”. We, her parents, would learn how to detect when her sodium levels were off. We would look for signs and symptoms from her. Increased thirst was one we felt the most confident in and Evie was great about letting us when she needed more water. 

No matter how confident we became over the years in our abilities to help maintain a normal sodium range for Evie, there were times we were reminded just how sensitive this “normal range” was. Multiple times were our Evie would go from playing in her garden to laying in a PICU bed. In the summer of 2019 everything we had learned would change.  The word “relapse” would be spoken.

Evie once again, at the young age of 7, would fight craniopharyngioma. This time the team of physicians would go through her nose in an effort to protect the hypothalamus as best as possible. While they were only able to remove half of the tumor due to calcium development, they were grateful to have been able to do even that much. She would recover once more and return just 2 weeks later for a port to be placed in her chest as she started proton beam radiation treatmen Monday through Friday for a total of 6 weeks. The hope was that the radiation would destroy what remained of the craniopharyngioma.  

In Evie’s case, the tumor remained, although we were grateful to learn that what had remained was considered “stable” once more. Evie would return home with what would be some of the hardest days we witnessed. Evie spent most of the following 3 months curled up in the fetal position with silent tears streaming down her cheeks. These were not just the typical headaches, these were the kind that left a child begging for help. She began a terrifying amount of steroids to help relieve the pressure.  These steroids would have her gain over 40lbs in just 3 months time, her hands and feet cracking and needing to be lathered in cream and covered with mittens, and layers of socks to help protect them.  

Imaging would reveal a need for a VP Shunt, and once again Evie would go back in for surgery.  The difficult part about surgery for children with DI is that it almost always fluctuates their sodium levels, leaving them in a very critical state, and requiring lengthy stays in the PICU before being able to go home.  

In March of 2020 Evie was able to come back home. She no longer was suffering from headaches and was able to join her friends back at school. She joined summer camps virtually with the Texas School for the Blind. We found ourselves feeling a sense of peace for the first time in a while, all that would change on October 8th, 2020. We had always been warned of the signs and symptoms that come with a stroke, warned of the risk every child fighting craniopharyngioma has due to the nature of this tumor and its location.  

Around 1pm on October 8th, I was helping Evie get dressed for her O&M Therapy when we both noticed she was not able to raise her right arm.  I can still hear the echoes coming from the team announcing over the intercom in the emergency room “Stroke Alert, Stroke Alert, Stroke Alert, Room 17”. We would be rushed down the halls with a large team of doctors and nurses to MRI, and shortly after learn a new word “Moyamoya”. Evie had indeed suffered a stroke that left her right side of her body weak. We were told that she had Moyamoya, a rare disease that in her case developed as a side effect from the radiation treatment she had undergone to fight craniopharyngioma. Both her carotids in her brain were almost completely occluded and she was at risk for more strokes and even death if we didn’t do something soon.  

Evie was flown to a specialty hospital where she underwent 2 EDAS surgeries to both her left and right side of her brain. She suffered more strokes in the 54 days she spent inpatient.  Most of those days her team not only was fighting for her life against the Moyamoya but also the need for a certain amount of fluid to keep her blood pressure where it was needed while also trying to keep her sodium level safe. 

Evie returned home to intense therapy to help her learn to walk, talk, and even eat again. She is a little miracle in every way possible as she did learn to do all these and much more. While she did grow in her abilities, we learned in a routine visit that Evie had developed adipsia, a word we had never heard. Evie had no thirst mechanism anymore. In a world with DI, no thirst can literally mean your life. We found ourselves once again trying to find the perfect amount of water, monitoring everything going in her body and leaving it, and multiple trips to labs weekly.  

Evie struggled with this news tremendously, she had developed over the years PTSD from her fight to live and each visit to the hospital or lab left her reliving those traumatic events in her head.  With the help of a therapist she has learned how to cope even with the frequent labs as we try to stabilize her sodium. That said, it has been over a year since we learned her thirst no longer worked and still to this day we struggle to find that right balance of water for her as it is always changing. Our options are limited as well, the only way to get immediate results is to go to the ER, labs outside take 24 to 48 hours to get results and by that time she is either stable or in the PICU. Being able to have a device at home will literally be life changing for Evie.  Being able to be in the comfort of home, safe with her family by her side.  Evie’s journey is only just beginning, a story that will give her more time to live her dreams outside of hospital walls and lab clinics, freedom to not be afraid of the wait for results.  

We will forever be grateful to those that helped give our sweet Evie this opportunity. This device is life changing for our daughter, a chance to closely monitor her sodium and prevent emergencies in the future. To all who are reading this, thank you for being the change in Evie’s life, for helping her focus on her dreams and less on her fears.  

Help us continue to provide these devices to children like Evie and support our ongoing work to solve the challenge of measuring blood sodium and mitigating hospitalizations.