Truly Inspiring: Kylie’s Story

I am sure most of you have heard of the poem by Emily Perl Kingsley titled “Welcome to Holland”.  In summary, she explains when you are going to have a baby it is like planning a trip to Italy. You buy the books, learn the language, make a plan, etc.  After months of waiting and anticipating, you board the plane and fly off. Right as the plane is about to land, they announced “Welcome to Holland”.  HOLLAND!?  You arrive and are in shock, but after that initial shock you take time to look around.  You realize that you might not be in Italy (as planned) but you are in a wonderful place.  You have to immediately buy new books, learn a new language, and navigate an area you never dreamed yourself being a part of.  It is a different place, but with a beauty all its own.  While you are in Holland, your friends went to Italy and come home talking about things you were not a part of and did not experience.  You mourn the loss of your dream, but if you spend your life mourning that loss then you will never realize how incredible Holland is.

Our family lives in Holland – we live in the brain tumor world. 

Our daughter, Kylie, was the “typical” first born child.  She walked early, talked early (and often), and loved being around everyone she met.  We imagined what our precious little girl would be like, what she would do, and what she wouldn’t do.  Of course, like any parent, “our” version of life wasn’t quite how things turned out. (who knew the Leave it to Beaver show wasn’t reality?)

When Kylie was three years old our life journey changed.  I can picture the room we were in, know the nurse’s name, and can see the doctor’s face when he came in and said “Your daughter has a 2.5 inch diameter brain tumor and you are not leaving the hospital until you speak with neurosurgery.”.  He lost me after the words “brain tumor”.  Mac and I carried our tiny three year old daughter over to the neurosurgeon’s office and heard the word “CRANIOPHARYNGIOMA” for the first time.  That was a Monday and by Friday (two second opinions later), she had her first 8 hour surgery with an 8 hour stay in recovery – way too long for a mom to be away from her precious 3 year old.

The original plan (don’t you just love that word) was for Kylie to have two radical brain surgeries with a two-man neurosurgery team, scheduled three weeks apart. We would go home in between for rest and recovery.  As any military man can tell you, no plan survives contact with the enemy….  Kylie came out surgery like a champ.  Her first question was “What time is it?” (so thankful she could talk). We held up fingers and her limited vision was still intact (another praise! She could still see!) She was alert and oriented.  That night in ICU things changed.  Kylie suffered a stroke which left her unable to swallow, walk, talk, or know that she had a right side of her body.  One week in the hospital stretched into 57 days.  Kylie underwent her 2nd craniotomy, as scheduled, and then moved to the brain injury rehabilitation portion of the hospital, progressed to day rehab, and then to four hours a day of outpatient rehab.

Kylie is our miracle child. We were told that she may never talk – she talks (and loves to tell jokes).  We were told she may never walk – she walks (in fact, Kylie walked in a 5K race last month).  She relearned to swallow and rediscovered her right side.  Kylie has beaten the odds and has time and again shown that expectations are meant to be exceeded.

Yes, there have been hills to walk up and mountains to climb. When she was relearning to walk, Kylie fell and brain shifted due to the newly found empty space left by the tumor.  That fall earned her a surgery. When Kylie was 5, her tumor recurred with a vengeance.  That meant another craniotomy.  When she was 8, an MRI showed two spots behind each optic nerve.  Those spots are still there, but by the grace of God remain unchanged.  The tumor took away a large portion of her vision and shut down her endocrine system. The stroke resulted in cognitive and physical deficits which present battles for her to conquer each day. Due to her lack of endocrine system, she takes more pills than the rest of our family combined just to function.  Any illness is more difficult and involved for her to recover from and can lead a trip to the hospital (yes, Santa Claus will find you if you are in the ER).

Our son Noah was three weeks old when Kylie was first diagnosed.  Being the sibling of a child with a brain tumor is difficult – if you don’t think so, just walk a day in a sibling’s shoes.  Noah spent long amounts of time with grandparents, aunts, and friends while Kylie was in the hospital and in therapy.  He is shuffled to stay with friends while we head to the hospital for emergencies.  He knows his way around doctor’s office waiting rooms, labs, therapy, pharmacies, and tutor’s homes.  His sister is different from other teens and that can be a lot to comprehend and accept.

The first things one does when you enter a country you are not familiar with and don’t understand is find others with whom you have commonality with. It became very clear early on that our family needed to connect with other families who also live in the brain tumor world.  Some who are farther along in their journey, some walking beside us, and some who have just entered. As much as family and friends try, there are things you cannot relate to unless you live them yourselves.

The Brain Tumor Foundation for Children is the “hub” in the southeast to support and connect brain tumor families.  One of my earliest memories of BTFC was not long after Kylie was diagnosed.  Mary Moore (at the time the only BTFC staff member) invited us to attend a Valentine’s craft party at a church which I think was located in Roswell.  We immediately felt at home, relaxed, and like one of the BTFC family. 

Every year, both of our children look forward to BTFC events where they can “be at home” –  Spring Fling Baseball Game, fishing extravaganza,  annual family picnic, the Williams’ Walk, Craft days,  or the amazing Christmas Party.  As parents, we have the opportunity to connect with others who walk in our shoes, are filled with knowledge, and offer never ending listening ears and support. 

A few years ago, the BTFC organized a Brain Tumor Symposium for parents. Kylie’s tumor is rare and families often never meet anyone with a craniopharyngioma. Amazingly, the cranio parents were one of the largest groups at the conference! (how awesome it was to connect).

Over the years, we have met some of the most incredible individuals who also found themselves in Holland. They are our lifelong friends who we will always share a special bond.  Way too many have shown us how precious life is when they earned their angel wings.

Kylie turned 16 this year.  It is difficult to look back 13 years ago when a doctor came in and said those words to us.  She has overcome so much and beaten so many odds.  We are remain hopeful, prayerful, and amazed at what God has done in the life of our family. 

We can’t wait to see what the future holds in Holland.


About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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One Response to Truly Inspiring: Kylie’s Story

  1. Theresa says:

    I love Kylie and her whole family. Their friendship has been a true blessing to my family. Kylie definitely inspires others and so does her Mom who gives of herself to everyone she meets. So glad to have met you in Holland!

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