NOTE FROM THE MACS STAFF

Kaitlyn's story has NOT been updated yet since she passed away on March 3rd, 2001. We will update the end of her story as soon as we receive more information from her family.

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Kaitlyn's Story
written by mom Jennifer

Kaitlyn Nichole (Katie Pooh) was born a beautiful happy, healthy, 6 pound little girl. She was your typical little girl; she learned to walk at fifteen months. Her first word was not mommy but "what’s that?". In September of 1999, at a little over fifteen months, I noticed she was having problems walking straight. She seemed to fall down more than usual and started throwing up after meals. It got worse instead of better. Kaitlyn lives with me (mommy), uncle Tony and her grandparents Toby and Beverly.

On September 28th, 1999, I took Kaitlyn to her pediatrician’s office. After the exam, the doctor told us that she had an ear infection. She gave us a prescription for some antibiotics and sent us home. During the next few days she only got worse. If she would stand she fell over. I decided to take her to another pediatrician, for another opinion. The doctor watched her walk and then we were told that my little girl might have a brain tumor. After hearing this I did not know how to feel inside. The doctor then asked us to take her to the hospital for a chest x-ray and blood work. Then as soon as possible take her to Children’s Hospital for an MRI.

That night as I laid in bed holding Kaitlyn tight, I prayed to the Lord to spare my little girl's life and let this all be a bad dream. On October 2nd, 1999, Kaitlyn went to Children’s Hospital in New Orleans for an MRI. When she was finished the doctor came out and asked us to come with him, so that he could show us what he found. That day our world was shattered, when I learned that my little girl had a large golf size brain tumor located by the cerebellum. The name of the tumor is Medulloblastoma (cancer of the brain and spine).

I felt numb.. I did not know what to expect. I remember seeing stories about little kids fighting cancer, however; I never thought it would happen to my child. All I knew was my nightmare had come true. My baby was really sick and I couldn’t do anything about it. I wanted to know why her, my baby... Like any mother, I asked the LORD to heal her and let me be the one to be sick.

Kaitlyn was admitted to the hospital for close observation that day. We met with the neurosurgeon Dr. Nadell; he felt that surgery should be done as soon as possible. On October 4th, she had her first surgery to put in a BP shunt to help drain the fluid off her brain. Then on October 8th was the surgery to remove the tumor. The surgery lasted 8 hours, 98% of the tumor was removed. She was in the intensive care unit for four days. Once again the wait was awful.. Waiting for her to wake up and see if she would still talk and had all the same abilities. When she woke up on the third day, Kaitlyn looked up at me and said "mommy". My heart melted. Kaitlyn started the first round of chemotherapy treatment on Nov 1st. This treatment was called Baby Pog. During this time, she had to have 5 blood transfusions and hospitalized for many different reasons.

Things started to look better, she was learning to walk again and would talk your head off. At last she was becoming happy again and always had a smile on her little face. Oh she has her personality back!! After the round of treatment she had another MRI on January 5th, 2000. Going in thinking the tumors were gone, instead to learn that they were growing. We only had two more options to choose.... a stronger dose of chemotherapy or radiation. She was only 18 months at the time, too young for radiation. On Jan 5th, she started a stronger type of chemotherapy.

Over the next months, she continued to improve. The treatment did not make her sick. She then had a follow-up MRI. The tumor was larger than the first one. The neurosurgeon felt that another surgery would be best, if not she would not make it to her second birthday. As much as I hated to put her through another surgery, I felt it was what could save her life. On March 8th exactly 4 months from the first surgery she went back in. This one lasting a little over four hours. Only 70% of the tumor was removed. Kaitlyn started waking up from the surgery on the 9th; she reached her little arms out for me to hold her. On March 10th, 2000, she had a CT scan to check for swelling.... More tumor was found and she went back in for another surgery that morning, lasting another four hours. A total of 90% of the tumors were removed.

Things only got worse from there. Kaitlyn fell into a coma on the 11th. The doctors did not think she would come out of it, so they asked if I wanted to let my little girl go if she stopped breathing again. I told them no... I knew that the Lord was with her and that He would not let anything happen to her. Throughout this time I kept my faith in the Lord and left Kaitlyn in His hands.

On March 26th, Kaitlyn opened her big brown eyes and looked at me. I finally got to hold my baby on March 30th. During the next two months Kaitlyn had four more surgeries: to get a track and feeding tube, change and replace her infected BP shunt. On May 12th Kaitlyn moved out of the PICU. With no other choice Kaitlyn started radiation on May 29th to hopefully kill the tumor. Kaitlyn left the hospital on June 10th after being there for three months. She celebrated her second birthday with her neurosurgeon at Children’s Hospital.

Kaitlyn continued to improve everyday. She still has the feeding tube and the tract. We received great news in July that the radiation is killing the tumor, they are almost gone. By the next MRI they should be gone. Things started to get better. That only lasted for a while.... On August 30th we took her to the doctor because she stopped using her legs. With another MRI we learned that the tumor has spread down her spine and is wrapped around the nerve, this is causing her to be paralyzed in both legs. Kaitlyn started radiation on the spine the next day.

Kaitlyn is doing well today. She has finished a week of radiation. We can tell a difference in her already, she is happier. She is continuing therapy and living a normal life. Nobody knows how long she has, so we are enjoying every minute that we have with her. With the Grace of God and all our prayers she will be cured! On September 15th, 2000, Kaitlyn did something that doctors said that she would never do again.. She started moving her toes again when tickled!! She still has trouble lifting them, however, our prayers were heard.