Kylie Harris

Kylie was considered a “typical” infant and toddler. She was inquisitive, never shy, and precocious. When she was 2 ½, we suspected something was not right with her vision. After a trip to the opthamologist, we were reassured everything was fine. Around that time, she began having drastic personality changes, very peculiar eating habits, periodic vomiting, and began sleeping more. Trips to the pediatrician resulted in being told all two year olds are peculiar.

Kylie and her brother, Noah, are 3 years apart in age. When Noah was 3 weeks old, Kylie was dancing around the room and after a twirl, she turned to look at her mom and her left eye was looking to the extreme outside.  Her eyes were not tracking and her left eye seemed fixed.  That was on a Saturday.  On Monday, we returned to the same opthamologist.  Kylie was now blind in her left eye and had reduced vision in her right eye. Her wonderful sweet ophthalmologist told us that one of the possibilities was a brain tumor pressing on Kylie’s optic nerves. That is when Kylie was referred to Children’s Healthcare of Atlanta.

On May 3, 1999, Kylie underwent an MRI and that is when we heard our  sweet, petite, 3 year old little girl had a 2 ½ inch diameter brain tumor. The words “Your daughter has a brain tumor and you are not leaving the hospital until meeting with neurosurgery,” will forever be edged in our memory.  After meeting with a neurosurgeon, we did return home and were encouraged to quickly obtain second opinions as time was critical.  Over the next 24 hours, we had consultations with three neurosurgeons.   It was decided her tumor was too large to remove in one surgery. The plan was for a two neurosurgeon team to conduct two craniotomies (radical brain surgery) 3 weeks apart.  The surgeries would be from different directions in an effort to reduce brain damage and maximize the amount of tumor that could be removed. 

On May 7, 1999, Kylie was taken back for her first craniotomy.  She walked into the waiting area, played games, danced around, and talked. Her main concern was if she could keep her fingernail polish on for surgery.  I remember looking at her and thinking “there is no way she has a brain tumor”.  But, she did.  What we found out is that she actually had 3 brain tumors that were clustered and had pressed on her optic nerves causing permanent damage. In between Monday (diagnosis) and Friday (surgery), the pressure had increased to the point her skull had separated. And, due to the location and size of the tumor, there was little chance of brain injury resulting. 

After 8 hours of surgery and 8 hours in recovery, we were able to see her.  We had been prepared for the worst, so we’re very thankful to hear her talk and for her to be able to see us. 

That night, in the ICU, everything changed. Kylie crashed and a code was called.  Kylie’s endocrinologist held late rounds and was present to run the code. (absolute angel sent from God that night). It would not be until the next day it was realized Kylie was no longer able to swallow, walk, talk, and did not know she had a right side. She stared straight ahead and did not seem to recognize Mac or I. She had suffered a stroke.

The original plan was for Kylie to have two craniotomies three weeks apart. We were to go home in between for recovery.  That night, the plan changed and  a week turned into 57 days in the hospital.   Regulating her electrolytes, retraining how to swallow, overcoming obstacles such as thrush and random temperature changes, adjusting to the “new normal”.  

Once Kylie was determined strong enough, she was transferred to the Comprehensive Inpatient Rehabilitation Unit for therapy. From there, she progressed to Day Rehab (full time Mon-Friday), and then to five days a week outpatient therapy. In all, Kylie was in some combination of therapy for 8 ½ years. 

While relearning to walk, Kylie fell and hit her head. Due to the now open space (her brain would eventually expand to fill the area left by the tumor), her brain shifted resulting in fluid build-up. Kylie had emergency surgery to install a temporary intracranial drain.  Minor 72 hour setback. 

Kylie did relearn to talk and to walk. If you spend time with her, you will quickly know that talking is one of her favorite activities.

Fast forward to age 5, Kylie was to begin kindergarten in two weeks. Her left eye closed and an MRI showed Kylie’s tumor was back. It was now pressing on the nerve in her face which controls eyelid movement. She underwent another surgery for tumor removal. We had prepared for the worst and another extended hospital stay.  Kylie’s doctors developed a plan for us to go to Boston for radiation therapy after surgery.   But……Kylie and God had different plans.  Kylie told her neurosurgeon that she would “stay 2 days and then come home”. We all smiled as we knew how things turned out last time.

In July of 2001, Kylie underwent her third craniotomy.  More tumor was removed than anticipated and it was considered 100% resected.  Kylie woke up in the ICU and demanded to see her neurosurgeon (seriously, she can be quite demanding).  The nurses tried to appease her and offered Kylie a popsicle. Kylie said she wanted “a hamburger”. Again, we all smiled. Thankfully, her neurosurgeon held early rounds.  When he came in, Kylie told him “I want a hamburger and I want to go home”.  So, 34 hours after entering the hospital for a craniotomy, Kylie was discharged.  She started kindergarten, with her class, two weeks later. 

In July of 2005, we found out Kylie’s tumor was back again. This time, there were two “flecks” seen on the MRI that were behind each optic nerve. The largest fear is total vision loss. It has been over 15 years and the “flecks” have not changed.  She is considered in remission (such a wonderful word).

Having a brain tumor and surgeries is only a portion of Kylie’s story. Brain tumors and a stroke have lifelong side effects. Kylie is blind in her left eye, has reduced vision in the right, right side partial neglect,  slowed muscle response, reduced IQ, short term memory and processing delay, has a non functioning endocrine system, and suffers chronic fatigue.  Any illness can be life threatening.  Kylie has been hospitalized as a result of vaccines, strep throat, the flu, and strep throat.  She became unresponsive after a bout with the stomach virus.  Her prognosis is listed as “uncertain”, the long term side effects of the life saving medications are unknown, and her daily battles will continue.  She will be followed for life by her neurosurgeon, ophthalmologist, and endocrinologist with routine blood work and MRIs. Beginning December 2021, Kylie has gone into adrenal crisis four times. The last time was the scariest, but her amazing doctors worked to make medication adjustments and we continue to pray that is what her body needed. Her side effects  make life a challenge, but they DO NOT define her or crush her spirit.

Kylie is our miracle child and has overcome every mountain put in front of her. When we were told she would not walk again, she walked. When we were told she would not speak again, she did. Kylie loves the water, but after countless lessons, we had given up on her learning to swim. That was us – not her. Kylie began swimming at age 15 and is now on the Masters swim team and the county year round recreation team. She may not be competitive, but she sets her own goals and has a great time (just ask her about her latest swim meet). One of her highlights is swimming in the annual Special Olympics swim meet held at Emory University. Kylie was determined to complete a 1k swim held at Lake Lanier and she not only met her goal, but swam a 1k event at Lake Allatoona as well. Her next goal is a spring triathlon and she is training hard - lookout Callaway Gardens Spring Tri in June of 2022! 

Kylie continues to meet milestones, not according to a developmental chart, but in her own time. Even after years, she continually makes new connections, such as the ability to tie her shoe or zip a zipper. 

Kylie is who she is today, because of an amazing amount of answered prayers, her sheer determination (some would stay stubborn as a mule), because of the incredible doctors/nurses/therapists at CHOA, and because of UGA Miracle supporting the Comprehensive Rehabilitation Hospital.

UGA Miracle gives Kylie a connection to an amazing group of individuals and makes her feel a part of an incredible University community. 

Thank you for ALL that you have done and that you do for our kids.

- The Harris Family