Project Description

Katelyn S.

Katelyn was a normal 2 year old playing outside a family wedding in Florida with her sister when she started feeling sick. We thought the sickness would pass, but the next morning when she awoke she could not walk on her own and she was dragging her left leg. Her actions made it seem as if she had suffered a minor stroke that had affected the left side of her body. Our family started the 9 hour drive back to Georgia and things went from bad to worse. Katelyn would get violently sick vomiting and then falling right to sleep. This pattern continued most of the drive home. By bed time the sickness has slowed and Katelyn seemed to be acting like she felt better. So once we were back home we all went to bed, because we were exhausted from the long trip. The next morning… the pattern started again. She could not walk unassisted, she was dragging her left leg and vomiting. Her dad took her to the pediatrician, so they could check her out. Once there, the doctor sent her directly to Egleston so they could run tests and find out what was making Katelyn so sick. Once there blood work was done and they decided to do a cat scan to rule out any head issues.

That scan would be the start of a nightmare for our family. There was a mass on her brain approximately 2 ½ inches in diameter. The best course of action for a child so young decided by the neurologist was to remove the tumor that was swelling, which was causing her sickness. From there they would determine what kind of tumor we were dealing with. We waited for several days pumping her body full of medication to shrink the swelling of the tumor before surgery. Katelyn had major brain surgery to attempt to remove all or a portion of the tumor. The surgery was a success they were able to remove the bulk of the tumor and she was doing great. Then the waiting game began, while the scientists at Emory University tested the tumor.

Several days passed and the doctors showed up at Katelyn’s hospital room door asking anyone that was not immediate family to leave the room, so we could discuss the test results. In my heart I knew that was not a good sign so I prepared myself for the news to come. The tumor was cancerous. Katelyn was diagnosed with a Primitive Neuroectodermal Brain Tumor or PNET for short. We were transferred down to the cancer floor where Katelyn would soon start 6 months of chemotherapy that would ravish her body. During the first three months of chemo, we would have to give Katelyn shots at night to build up her blood stems that would be harvested to help recover her body during the last 3 months of chemo. After 2 months we went to Emory University for a blood stem harvest. They hoped to collect at least 15 million blood stems, but in the 3 hours that Katelyn was hooked up to the machine they collected approximately 116 million. This would indeed benefit her in the later months.

Katelyn started her chemo, lost her hair, had mouth sores and blisters from the chemo with severe bone pain, but she rarely lost her sense of humor or smile even when her body hurt so bad she could not walk or sit without pain. After the 3rd month of chemo we started the most toxic regimen of chemo that had to mix in her blood stream because mixing in the IV without the aid of other fluid would have been too toxic for her body to handle. After receiving each chemo treatment Katelyn would then receive the blood stems harvested to help her body recover. After the 6 months of chemo ended Katelyn was only 2 ½ years old, which was too young for radiation to the central brain. We waited until she turned 3 in January to start a 30 day cycle of radiation.

Katelyn still has side effects from her treatments such as thin hair, vision, hearing and memory loss, and will always have weakness on her left side, but after everything she has been through she continues to raise awareness of childhood cancer and show that surviving is possible. She continues to be a positive role model who enjoys each day and lives for every moment

Rally For

PNET Brain Tumor