At three years of age, Kylie was diagnosed with a craniopharyngioma brain tumor, which is technically considered benign, but because of the damage it can cause is treated as a malignant tumor. Kylie has had four surgeries for three occurrences of her tumor.
Kylie is very close to her brother Noah and enjoys school and singing in the chorus at church. She also loves to bake and do crafts.
Our daughter, Kylie, was born on January 8, 1996. She shares that birthday with 2 very good friends and Elvis. When Kylie was little, she was a very active, outgoing, talkative child. She was the type of kid who would pull out the "electrical outlet protectors" and hand them to you, because they don't belong there. She would also "play dollhouse" by lining her dolls up in a perfect row and be done.
When Kylie was 2 1/2 years old, she had a complete change in her personality, with frequent crying, night terrors, etc. Kylie also began having chronic constipation, periodic gagging/vomitting, etc. Over the next 9 months, we made frequent trips to her pediatrician and other doctors. It was in April of 1999, when she was 3 years/3 months old, that Kylie's left eye turned to the outside. That is when we found out that she was now blind in that eye. 3 weeks later, Kylie had an MRI which showed a craniopharyngioma brain tumor and hydracephaly.
Kylie was diagnosed on a Monday and on Friday, May 7th, she underwent her 1st craniotomy. Due to the size and location of her tumor, Kylie's resection was to be completed in 2 craniotomies planned for 3 weeks apart. Within 24 hours of her 1st surgery, Kylie lost the ability to swallow, walk, talk, or know that she had a right side to her body. Instead of going home in between surgeries, she stayed in the hospital for close to 2 months having IV and ng tube feedings along with speech, occupational and physical therapy.
She had her 2nd craniotomy 3 weeks from the 1st. From the "neuro floor" of the hospital, Kylie was transferred to the Inpatient Rehabilitation (CIRU) floor of the hospital.
After being discharged from Inpatient Rehabilitation, she proceeded in the Day Rehabilation program and then to Outpatient Rehab.
Shortly after Kylie was discharged from CIRU, she had to return to the hospital for a 72 hour temporary ICP drain due to the development of hydracephaly. Thankfully, she did not require a permanent shunt.
Kylie's therapy continued and on July 4th, she said her first word. From there, she relearned to speak and talk. For the next 2 years, she continued in OT, PT, and ST.
In July of 2001, Kylie was diagnosed with a recurrance. This time, it was a cystic craniopharyngioma and grew very rapidly. She had a 3rd craniotomy on July 28th, 2001. Kylie was 5 years old now and was looking forward to beginning Kindergarten in August. Just 3 weeks after her surgery, she began Kindergarten with her class. At first, she attended half days and then progressed onto full days.
Therapy continues to this day for PT, OT, and ST. As she gets older, we are seeing more signs of her learning difficulties and social differences from her peers. Kylie also takes medication for diabetes insipidus, panhypopituitarism, and hypothyroidism - all a result of her tumor.
Even with everything Kylie has been through, she LOVES life and loves being around people. Kylie will go to any type of social event which she is invited . She loves meeting new people, doing new things, going to camp, crafts, games, baking cookies, hanging out in the pool, etc. She wakes up everyday with a smile.
Kylie's philosophy on life is that you can fix anything if you draw someone a picture and make them some cookies.
In July of 2005, we found out that Kylie's tumor has once again recurred. We are happy to say that since her most recent diagnosis, her tumor has gone "unchanged" and no treatment has been necessary.
One of the friends who shares Kylie's birthday, nicknamed her "Little Princess" when she was born. Kylie will always be our "Little Princess" and we are so proud of her!!!!