Wiley K. - Quilt Finished in 2007

Born: February 24, 1989

Illness: Crainiopharyngioma (brain tumor)

Wiley's Story

Written by Wiley's mom Stacy in 2006

As parents, you are always grateful for the blessing of normal healthy children. For the majority of us, a serious health concern or possible disability for your normal child never enters your mind. That’s the way we were.

Wiley was born at noon, the first delivery of the day, on February 24th, 1989. He was a perfect, 9 lb. baby boy. As he grew, we had the normal scrapes and cuts of growing, but never any serious illnesses. Our first possible clue that there was anything wrong was when Wiley was in the third grade. During the state required vision tests at school, they determined he needed to see an optometrist because he tested a 20/70 vision. I took him to an ophthalmologist, who said Wiley had Ambliopia, or lazy eye. He said it was rare but this condition could be caused by a tumor, but Wiley showed no signs of that concern.

As Wiley grew, he excelled in academics. He is the kid everyone in the school knows and likes. He goes out of his way to make the not so popular kids and the popular kids feel good about themselves. Students of all ages know Wiley.

When Wiley was in 9th grade we made the decision to try growth hormones, since all his friends were growing and he still looked like a 7th grader. He would jokingly tell new people he was a 30 year old midget. At 4’11”, he was the smallest in his class. After two years of observation and preliminary testing, our endocrinologist started Wiley on the growth hormones the week after hurricane Katrina hit, in September 2005. We were excited and so was Wiley at the prospect of growth, but little did we know that this would lead us down an entirely different life path.

After a month of growth hormones Wiley started to have headaches. I attributed this to high school and teenage stress, even taking him to a psychologist. The day he started throwing up with the headache I called the doctor and he scheduled an MRI. We had our MRI on the Tuesday before Thanksgiving. The doctor called the following Monday and said he needed to meet with us and make sure that both mom and dad was there. He called our house twice that evening to make sure we got the message.

We got up the following day and went to school as usual; not knowing what was to come. I checked Wiley out and said we would be back before lunch. When we met with the doctor he told us the MRI showed a tumor and that he had already talked to a neurosurgeon and he would take us to him as soon as he got some blood work. We left our endocrinologist office for the neurosurgeon, who explained that Wiley had a rare tumor called a Craniopharyngioma, a non-malignant brain tumor, and that we needed to do surgery as soon as possible. Wiley was admitted six days later on December 5 and surgery was on December 6. The doctor successfully removed 90% of the tumor. The remaining tumor could not be removed because it was tugging on a major artery and the doctor could not see how involved the optic nerves were with the tumor. This remaining part would be removed at a later date by surgery or gamma knife. The doctors said we should be out by Christmas. As a result of this tumor and it its location in the third ventricle, Wiley developed endocrine issues, the main one being Diabetes Insipidus, as well a short term memory problems. On December 21, he dehydrated; a scary issue connected to the DI, and was rushed to ICU where we stayed for Christmas and New Year’s. We finally went home on January 12, 2006.

Wiley goes to Tumor Clinic at Batson Children’s Hospital every other month to have an MRI and meet with all his doctors. At May clinic, the MRI showed that the tumor had grown, enough to fill the 1/3 of the space that was left by the first surgery. It was also putting considerable pressure to the optic nerves, so we were admitted on June 5, 2006 and surgery was done on June 6. The surgeon successfully removed the part of the tumor that was draped over the optic nerves, leaving a very tiny bit that that we thought would be treated with gamma knife. With the second surgery, Wiley lost considerable vision. The right optic nerve was the thickness of a sheet of paper after surgery and that eye has very low to almost no vision. The left eye is getting better but it is still very limited. Because hunger is controlled in the third ventricle, Wiley has no sense of “full”, so he is always hungry, and has put on 70 lbs, going from 134 to 204 in a very short amount of time. Being only 5’1”, his bones and muscles are not made for this amount of weight, which makes it hard for him to get around.

During all of this, Wiley’s records were also being studied at St. Jude Children’s Research Hospital in Memphis, TN, by Dr Tom Merchant. After the surgery in June, it was decided that the best treatment protocol for Wiley would be 6 weeks of radiation at St. Jude. We went to Memphis at the beginning of August. Wiley finished his treatments on September 14th. He made considerable progress while we there with his memory and physically. His eyesight has stabilized. We now have to be aware of headaches or drastic vision changes that can mean a cyst is forming around the area of the tumor.

Wiley has been great through this season of his life. Last school year we visited school, but he was not able to finish his junior year of high school. He is now back at school. Who knew a teenager could miss school so much! His classmates have decided he will graduate with them in May, so they are helping him with his classes. It has really been great to see what Wiley is going through, can have a positive effect on his friends and classmates.

With the support of family, friends, and our home church, we are getting through this season of Wiley’s life. We know that there is a special purpose for his life. The week before his second surgery, Wiley was talking with a 9 year old little girl at our church, who was having surgery the day before him. He was reassuring her that the doctors would take care of her and there was nothing for her to fear. That tells you what a special kid he is.

Wiley had a followup visit at St. Jude in Memphis on October 31.  (Everyone should get to trick-or-treat at St Jude!!!) Doctors were thrilled to see that the remaining tumor had shrunk almost 10 mm.  After radiation, typically, craniopharyngioma tumor show some swelling.  We were thrilled that Wiley responded to radiation in a good way. 

We are finished with Wiley’s first semester of his senior year.  He is doing well in all his classes.  Because of the vision loss and memory difficulties, we are all working to help Wiley with all his work.  Hopefully we will graduate with honors.

Wiley is looking forward to Christmas, since he doesn’t remember last year.