Colleen K. - Quilt Finished in 2007

Born: March 24, 1994

Illness: Medulloblastoma, Polyposis, Turcot's Syndrome, Ulcerative Colitis

Colleen's Story

written by mom Chris

Colleen was born in 1994.  She had some difficulties at birth because the cord was around her neck and she needed to be intubated.  She went home on an apnea monitor because occasionally she would stop breathing.  Despite these problems, she grew to be a happy and healthy child.  We had her genetically tested in 1998 for Familial Polyposis, a disease that her dad has.  The test came back positive.  She had the gene and would most likely develop intestinal polyps and colon cancer if left unmonitored and untreated.  She began yearly colonoscopies at the age of 6.  It was during a scope that they discovered that she also had Ulcerative Colitis.  This flared up a few times between the ages of 6 and 9.  There was no sign of polyps and wasn't expected until around puberty.

  At the beginning of 2006, Colleen began experiencing dizziness and instances when she would be clumsy and uncoordinated.  Her irish dancing began to suffer and she could not dance with her usual grace and power.  The instances were not constant so we did not take her into the doctor.  In March she had two instances of headaches with vomiting that we thought were migraines.  She had these before and they didn't seem related to anything.  At the end of March, she began having difficulty with handwriting and with getting her right hand to complete simple things like turning on the bath water. 

We took her to the doctor.  An MRI was ordered and a 4" by 4.6" tumor was found in the back of her brain.  She was in surgery three days later.  All but less than 1 cm was removed.  It was determined to be a Medulloblastoma which was actually related to her having the Familial Polyposis gene.  The new disease is called Turcot's Syndrome.  They also found 40 stomach polyps while she was in the hospital.  She spent 3 weeks in the hospital learning to talk, walk and to dress herself. 

  She underwent 6 weeks of daily radiation therapy with weekly injections of chemotherapy.  She currently is receiving chemotherapy and will continue for about a year.  With Turcot's Syndrome, she has the increased chance of developing other cancers like uterine, colon, skin.... 

Written by Colleen's mom Chris in July 2006