Lenzie Nicole Butland

Ataxia; Ganglioneuroblastoma; Opsoclonus Myoclonus Syndrome

On New Year's Eve 2004 our baby girl, Lenzie, woke up and couldn't do anything. She was limp and her little body was shaking. She couldn't sit up, crawl, stand, walk or talk—all things that she once could do. Lenzie was a healthy one year old little girl until New Year's Eve. My husband and I rushed Lenzie to the local ER that morning. They called in a Pediatric Neurologist to examine Lenzie. They also performed a CT scan and gave her fluids through an IV. The Neurologist diagnosed Lenzie with Acute Cerebellar Ataxia. He pretty much said there was nothing we could do and Lenzie would eventually get better. It could take a few weeks, months or a year. My husband and I were not pleased. I knew that something was terribly wrong and I didn't except that this was what was wrong with our daughter and nothing could be done. Lenzie got worse over the next few weeks and I did lots of research on the Internet. My husband and I finally decided to drive to Birmingham one Saturday and take Lenzie to Children's Hospital ER. We got a totally different response from Children's. They admitted Lenzie right away and began all kinds of test. Lenzie had spinal taps, CT Scans, MRI's, X-rays, blood was drawn several times a day and urine samples were taken several times a day. Everything always came back normal. This was so frustrating. The neurologist at Children's diagnosed Lenzie with Ataxia. Over the next nine months we continued to see the neurologist at Children's and he continued to order tests. On September 7, 2005 Lenzie's neurologist ordered a CT Scan because Lenzie was still not walking. She had learned to sit up, crawl, pull up and talk all over again with the help of Physical, Occupational and Speech Therapy, but was still not walking. I thought the test would be normal because all the rest were always normal. I was wrong. I was told that Lenzie had a tumor on the outside of her spine. Our world was turned upside down. Lenzie's neurologist was so sweet and comforted me. We were taken right over to Clinic 8 which is the Oncology Clinic and met our new doctors. They went over a few things with us and Lenzie was admitted. Two days later Lenzie had major surgery to remove her tumor and have a port put in. They had to collapse her left lung and the surgery took eight hours. The surgeon removed a golf ball sized tumor from Lenzie's spine. The tumor was sent off and a few days later Lenzie was diagnosed with Ganglioneuroblastoma and Opsoclonus Myoclonus Syndrome. The outside of Lenzie's tumor was benign and the inside was malignant. Lenzie had Stage 2 cancer. We were scared to death. Lenzie started chemo a month later. We were supposed to start Chemo a few days later, but couldn't due to complications from surgery. The Chemo was not for the cancer, but for the OMS. OMS is an Auto Immune Disorder. Lenzie's body got confused while trying to fight off the tumor and her body started attacking her brain. There is no cure for OMS only treatment. Lenzie had months of Chemotherapy, IVIG treatments and daily ACTH injections. She is currently in remission and is off all treatments. Lenzie goes to Children's every three months for checkups. We have to be very careful with Lenzie. Any little thing can set the OMS off like a cold, fever, etc. and that means more treatment. I want to thank everyone at Children's Hospital. Without you I don't know where we would be today. Children's means the world to me, my daughter and the rest of our family. I don't know what we would have done without them. They are the only reason my daughter is doing as well as she is today. Our local doctors and hospitals could not figure out what was wrong with our daughter. The doctors at Children's didn't give up. They kept doing tests and research until they figured out what was wrong with Lenzie. The doctors, nurses and the rest of the staff at Children's are all wonderful and they really care about their patients. Children's was our home for a month after Lenzie was diagnosed. The nurses on 4 Tower always made sure we had everything we needed. The Clinic 8 nurses and staff are wonderful too. We have spent a lot of time in the Infusion Room getting Chemo and IVIG. Most of the time I had all three of my children with me and the nurses in clinic always helped me and made sure we had everything we needed. We love everyone at Children's!