Kylie Mikaela Harris was born on January 8th, 1996. One of our dear friends gave her the nickname of “Little Princess”. A nickname we have loved and she will always be our little princess. After several months of progressing symptoms, Kylie was diagnosed with a 2 ½ inch diameter craniopharyngioma brain tumor on May 3, 1999. She was 3 years old. At the time of diagnosis, Kylie’s brother Noah, was 6 weeks old.
Due to the large size and location of her tumor, it was planned for her to undergo two craniotomies scheduled 3 weeks apart. Both surgeries would involve two neurosurgeons and last around 8 hours each. Her first surgery took place on May 7, 1999. By the time of the surgery, Kylie’s skull had separated from the pressure. Originally, we were to come home in between surgeries, but that didn’t quite work out. The first night in ICU, Kylie suffered a stroke, which left her unable to swallow, walk, talk, sit-up, know she had a right side, and she stared blankly off (no emotion). Her second craniotomy took place while she was still inpatient. Instead of going home in one week, Kylie was inpatient 57 days.
For rehab, Kylie spent time with inpatient rehabilitation, the separate CIRU (Comprehensive Inpatient Rehabilitation Unit), day rehab, and then four hours a day outpatient rehabilitation. In June, Kylie’s brain shifted due to the open space created by removing the tumor, and she developed hydrocephaly. She underwent an emergency surgery for a temporary ICP drain to remove the fluid buildup.
Kylie continued speech, occupational and physical therapies until she leveled off her progress. We then took a break from thearpy and let Kylie just be a kid and enjoy her time taking dance lessons, art classes, and hanging with friends and family.
In July of 2001, Kylie’s tumor resurfaced with a rapidly growing cyst. She underwent another craniotomy on July 28th. Three weeks later, she attended opening day of kindergarten with her class.
In July of 2005, we found out that Kylie has a fleck behind her right and left optic nerves. Each time you have brain surgery, it becomes more difficult and it is thought to be very risky for Kylie to have another craniotomy. With the new flecks behind each optic nerve, there is elevated concern for her remaining vision. The plan is to have regular scans, routine visual fields tests, and watch her closely. In the past 5 years, the flecks have not changed.
Kylie continues to learn to adapt to living with blindness in her left eye, right side partial neglect, lack of endocrine system (all functions must be replaced by medication and she has routine blood work to check levels), reduced IQ, memory loss, processing and developmental delay, and fine motor issues.
We are in constant prayer for her tumor/cyst not to grow and God to save her sight and her spirit. Kylie is a very happy, social, and caring child. She loves baking for friends, making crafts, being with friends and family, meeting new people, playing card games, and going to camp. In the past year, she has also become very active with the Therapeutic Recreation program near us.
Due to Kylie’s medical condition and lack of endocrine system, she is considered medically fragile. This was shown loud and clear to us in 2010. Kylie had not been feeling well most of December and even with several doctor visits and rounds of blood work, a cause had not been found. On January 18, Kylie came down with a very mild case of the stomach virus. On January 19, she was eating and drinking and seemed to be doing well. That all changed when she quickly became non-responsive and went into shock. 911 was called and the paramedic did not feel they could transport her to Scottish Rite, so she was sent to a local hospital to be stabilized. From there, the CHOA transport team came and took her to Scottish Rite. It was one of the scariest times we have had along this journey and resulted in 5 days in ICU. In September, Kylie came down with strep throat and had to go to the ER for fluids and IV antibiotics. Those were reminders of how quickly things can change when dealing with the lifelong complications of a brain tumor.
Kylie is our true miracle child. When we were told she might never talk or walk – Kylie did. When we were told she might never learn to read – Kylie did. When we were told she might never grow (due to not producing Growth Hormone) – Kylie did and she is almost to her goal of 5 feet. The sky is the limit and we cannot wait to see what wonderful accomplishments are ahead.