On May 18th 2002, we took our 21 year old daughter to Urgent Care with weakness in her right hand and arm. After five days of hospitalization and numerous tests she was diagnosed with having had a stroke and released from the hospital and sent to out patient occupational therapy.
She was rapidly loosing more & more use of her right hand & arm and her speech had become affected. Such continual loss was not characteristic of a stroke. Her therapists & doctors were very concerned and she was then admitted back into the hospital for further testing.
The tests were inconclusive so she was referred over to UIC for even more extensive testing and finally a brain biopsy. While waiting at home for the biopsy results, she was still loosing more strength and now has totally lost the use of her right side. She was admitted back into the hospital. Her doctors had no sure answers.
When the results from the biopsy came back, the diagnosis was devastating. It was called Gliomatosis Cerebri, a very rare malignant infiltrating brain tumor. She was told that this tumor is inoperable and as of yet no known cure is available. Her life expectancy was 6 months. There are very few documented cases of this tumor type with no known survivors and very little research into it.
Dr. Stewart Goldman at Children's Memorial Hospital in Chicago heard of Chrissy from a family member and we were told to contact him, because he believed he may be able to help. Chrissy's referral was not approved to Children's Memorial Hospital, but after meeting with him, Chrissy decided to continue her treatment with Dr. Goldman. She had total confidence in him and she liked the fact that Dr. Goldman said to her that he would like to sit in rocking chairs next to each other in an Old Folks Home someday. He gave her hope which improved her attitude and quality of life.
Chrissy underwent a second brain biopsy to confirm the previous diagnosis. The second results proved the same. We have been told that there were probably only less than 100 documented cases of this disease. That number has been increasing since Chrissy's death. And still not enough research into this.
Chrissy had six rounds of chemo therapy, weekly blood tests, monthly infusions. On Oct. 14, 2003 she started 28 full brain radiation therapy treatments. During her radiation she had some complications. On Nov. 2, 2003 and after 14 treatments she was admitted into Children's Memorial for further evaluation and another MRI which showed that the radiation had failed and her tumor was aggressive. On Nov. 5, 2003 she was released from the hospital under hospice care. She was home for one day before she suffered from grand mall seizures and fell into a coma and was taken to the hospital on Nov. 6, 2003 and placed under hospice care there. She passed away seven days later on Nov. 13, 2003