Meet Adalyn McGuire

On Friday, July 8, 2022, three-year-old, Adalyn McGuire, woke up from a restful night’s sleep feeling anything but normal.  She was off balance and didn't want to stand up while getting dressed for school, and her right eye looked a little off center.  Her parents, Andrew and Stephanie, had noticed her balance getting a little worse over the couple weeks prior, they didn't think much of it at the time and wrote it off to Adalyn just being a goofy little three-year-old.   

Her parents took her to Williamson Medical Emergency Room in Franklin, TN, to get her checked out, fully expecting that they would want her to see an optometrist for her eye, but wanting to be cautious in case there were something more.  After looking her over, we were quickly referred to Vanderbilt Children's Hospital in Nashville for an MRI.  At this point, they knew there must be something more going on, but were still hopeful that the MRI would come back normal. 

Shortly after returning to the exam room in the emergency wing to wait for Adalyn to return from her MRI, a couple of doctors walked in.  One of them walked towards Andrew and Stephanie and knelt down in front of them.  They knew it couldn't be good news. 

The man softly explained, "We saw something on the MRI.  It is a tumor.  It's in her brain stem.  We don't have a lot more details for you right now, but we wanted to let you know what we saw.  Your Oncologist will be here shortly to discuss with you in more detail.  Do you have any questions right now?"  Andrew told the man, "I have lots of questions, but none of them are going to be helpful right now."  

The doctors left, and shortly thereafter, the Oncologists arrived to explain the diagnosis.  "Adalyn has a condition called Diffuse Intrinsic Pontine Glioma.  We call it DIPG.  It's a rare brain tumor that occurs in the pons region of the brain stem.  As it grows, and swells, it presses on the cerebellum, in the back of the head, which is responsible for a lot of the basic functions of the body.  Balance, eye movement, swallowing, breathing.  This condition only accounts for about 4% of all pediatric brain tumors, and there are only 400-600 cases diagnosed in the United States each year.  There is no known cause and no known cure for this condition, but there are treatments that can be fairly effective.  We're going to start Adalyn on steroids immediately to help control the swelling, which is likely causing a lot of the symptoms she is experiencing now.  Then we are going to start her on radiation.  The radiation will be given in 30 sessions, Monday through Friday, for six weeks.  We expect that this radiation treatment will substantially reduce the size of the tumor and eliminate all her symptoms.  BUT, the radiation treatment will not completely remove the tumor.  And it will very likely grow back.  We can only do the radiation treatment once because the brain can't handle any more radiation.  There are some clinical trials, but none have shown any significant improvements over radiation treatment alone."  Her parents would learn a couple days later that DIPG has a genetic component, resulting from a genetic mutation.  The foundational wiring of her very being is degraded, and there is no way to repair it. 

A month after Adalyn’s DIPG diagnosis, Stephanie and Andrew welcomed their third little girl, Analyn, into their home.  Imagine, if you can, caring for three little girls ages 3 and under, all the while facing a terminal brain cancer diagnosis.   

Adalyn loves flamingos and princesses, especially Elsa and Anna from Frozen. She has spent time in equine therapy with her horse, Katrina, at Angel Heart Farms.  Adalyn is artistic and enjoys crafts, reading books, singing songs, and spending time with her family.   

As of today, March 8, 2024, Adalyn has been battling DIPG for 20 months; she has far exceeded the 6-12 month prognosis.  Her 5th Birthday is March 31, 2024. 

You can read more about Princess Adalyn on her Caring Bridge site: 

https://www.caringbridge.org/visit/adalynmcguire