Jessica's Story
written by mom Kate

My wonderful, beautiful gift of a child, Jessica was born on September 9th, 1992 and was progressing normally, although she was born with a genetic disorder called Neurofibromatosis (NF) which can cause tumors - usually small, usually benign, usually just under the surface of the skin. Jessica's NF was only manifested in small brown birth marks called "Cafe au Lait" spots - no tumors until then.

Jessica was very loving, kind, giving and caring. Around Thanksgiving of her first year of school ('98), she started not acting herself. She was always a light eater and was then eating us out of house and home. She was becoming withdrawn, acting almost depressed. Then she started slurring her words and at times was not able to complete a sentence. So the week after my husband, Albert, left for sea (he is in the Coast Guard and was going on a 6 week patrol), I took Jessica to the pediatrician. She ordered an MRI because she knew Jessica had NF and wanted to just rule out tumors. After the test, I was nervous, but tried to put it out of my mind for the weekend. Monday I had an appointment with her neurologist who took one look at the films and ran out of the room. She was gone for about a half an hour... the longest of my life... to that point anyway. I looked out the window, sang with Jessica, hugged her, tried to stay strong.

Finally she came back and told me that she had gone to consult with the neurosurgeon to confirm what she had seen - a small gray spot in the center of Jessica's brain which she believed to be a tumor. I felt scared, alone and sad. While we were waiting to have another scan, I spoke to Albert for the first time about what was going on via a satellite phone. It was a very difficult phone call from the hallway of the hospital. He flew home the next afternoon.

A few days later, we went to the University of Florida in Gainesville (2 hours north of us) for a biopsy. She came through everything with a smile. We were given the diagnosis, Anaplastic Astrocytoma, which meant cancer. We were facing radiation and chemotherapy... and even so, the doctors said we would be doing well if she made it a year. We have been through radiation and chemo, the first protocol of which stopped working in September when the tumor took off growing again. We switched to a stronger chemotherapy regime. Three weeks after we started the new chemo (5 days worth), we had another MRI (in the first part of November). We were nervous and not optimistic. She was showing more signs of deterioration. We were prepared to let her pass to the next world and become our little angel, but the MRI showed that it had shrunken ½ cm each direction. We and the doctors were stunned. So we continued on.

Although the tumor continued to shrink, there had been even more neurological symptoms. She lost her ability to walk, talk, grasp things with her hands, eat (being fed by a tube). She has also lost all her hair and has gained a lot of weight due to the steroids. But through all of this, she stayed happy, smiley and a very easy patient to take care of! We have often said that you cannot control the things that happen to you... but you can control how you react to them. Albert and I decide to take each day as a gift from God.

Shortly after, Jessica made a complete deterioration. Not only did she have 3rd degree burns on her legs and tush where the urine would touch them, but she also had uncontrollable, very painful muscle spasms. She had to be kept on continual pain medication and muscle relaxers to make them tolerable. We stopped all chemotherapy treatment at the beginning of February and brought her home to die.

Hospice helped a tremendous amount. No one expected her to make it to the end of March 2000. We ran out and bought a casket and burial plot, knowing that we did not want to have to deal with that at the last minute. However, much to everyone's surprise (and great joy), as the chemo left her system, she began to regain some of her strength and even re-grew her hair! She could smile and even laugh again. She always loved to smile. So she lived very peacefully and happy for a great summer.

Jessica began to deteriorate again shortly after her 8th birthday (September 9th, 2000). It was a slow, peaceful deterioration. She was not in a great deal of pain. She just slept a lot. She died the afternoon of November 21st, 2000, surrounded by family and friends. We all held her and told her that it was okay for her to leave. We told her that her granddad would be there to greet her on the other side.

According to our religious beliefs, we buried her the next afternoon. Just before we left for the cemetery, one of our best friends called to say that she had had a dream about Jessica the night before. She was in a field of flowers, her blonde curls bouncing as she skipped along, holding the hand of a man who she described in great detail to me. She didn't know this man... but I did. She described my dad to a T! So we know that Jessica is in God's Hands now, happy, free from sickness and pain, and with her Granddad!

Camille and Alexander are both doing well, enjoying school, their horses, dancing and playing. We miss Jessica very much, but we're learning to live our lives without her physical presence. We still feel the joy and love she bestowed upon us.