Kate is a happy child, tired from the effects of chemo, but, nevertheless, always ready to play with Kara or Joy. She loves to watch Arthur, Mr. Rogers, Zooboomafoo, and Big Comfy Couch on TV. She enjoys playing with her Barbie dolls, and her Fisher Price dollhouse, and especially likes to play dress-up. She enjoys swimming and just recently informed her Mom that she doesn't want to stay in the "baby pool," hence, she is taking swimming lessons. She has a passion for books, especially Berenstein Bears and Arthur books, however, she will gladly listen to any story that is read to her. She has already learned to read in Kindergarten this past year and is looking forward to attending first grade in the fall.
When It All Started
From the time she was born, Kate's mom, Paula, was aware that Kate's head was a bit large. However, the circumference of her head was within +/- 2SD, still a normal range, when Kate had her medical checkups. She became less willing to do physical things, always prefering to sit and watch. Also, she was very hesitant when stepping off a street curb or descending stairs. This had been mentioned during each of Kate's medical checkups, but the pediatrician couldn't find anything wrong. Thanksgiving weekend, 1996,(when Kate was 3), the family had been visiting relatives, an Aunt had commented on Kate's limping. Kate was taken to her pediatrician the next working day, and then referred to a neurologist. After ten days of tests, the diagnosis was made. Kate had a brain tumor, although the type of tumor couldn't be determined until surgery. The operation occurred on Friday, Dec.13 th. The tumor was located at the base of the cerebellum and attached to the brain stem. For this reason the tumor could not be totally resected. There was also fluid accumulating, so a shunt was inserted in the brain, draining into the abdomen. After surgery Kate was in ICU for several days before she finally awoke. It was determined that she developed cerebellum mutism, a syndrome that occurs as a result of surgical resections of posterior fossa tumors that involves mutism and a variety of other neurobehavioral symptoms. Kate could not walk, talk, sit up or feed herself. She was hospitalized for 6 weeks, because she developed a fever of unknown origin. So, Kate was undergoing testing, along with physical, speech and occupational therapy. During her hospital stay, she did start speaking, and her first word was "Momma."
When Kate was finally discharged, a joyous occasion for all of us, her therapy sessions continued at home. She walked all over the neighborhood with a walker, with Carmen propped between the handle bars. With the help of her parents and therapists, and a lot of hard work, Kate was back to her normal activities. However, this is not the end of the story. In April 1998, after a quarterly MRI showed that the tumor was growing, Kate started a standard chemotherapy protocol. After nine months of weekly infusions and quarterly MRIs, the tumor grew again. This past March, after Kate was exhibiting certain symptoms, it appeared that the tumor was resistant to the chemo and was growing again. Kate is currently on an investigative drug, temozolomide, which is taken by mouth. On a 28 day cycle, she dutifully swallows three large capsules each day for 5 days. After 21 days she has a blood count done, and usually by this time, her platelets are critically low. She is enjoying making less frequent and shorter trips to the clinic. All totaled, in the past 2 1/2 years, she has had one general surgery, 11 neurosurgeries, and another instance of cerebellar mutism. She had a second VP shunt placed and completed nine months of standard chemotherapy treatment, only to restart on a second protocol. She has had ongoing PT and OT and hundreds of doctor's appointments at a variety of specialties. At the time of the diagnosis Kate was 3 years and 3 months., and Kara was 17 months old. The two girls were enjoying Story Time at the local library, trips to the Baltimore Zoo, and playing with neighborhood friends at the playground. The whole family just accepted the abrupt change in their lives, and they did a lot of adapting. Truly the girls cannot remember a time when the family was not dealing with Kate's medical problems, so to them, this strange life has always seemed normal. The family has become involved in several groups that provide retreats and activities for families of children with cancer. Last September, they attended The March in Washington, D.C. for cancer awareness and funding increases. Kate was featured on a Fox 5 segment on the brain tumor program at Children's, thereby increasing awareness of pediatric brain tumors and the fact that they have now surpassed leukemia as the most prevalent childhood cancer. Kate's dad has become active with The Ride for Kids, a motorcycle ride and the largest fundraiser for pediatric brain tumor research in the country.