On August 30, 1976 at 8:38 pm, our lives changed forever with the birth of our "Special Angel," Christopher. After an emergency Cesarean-section delivery (they said that my afterbirth had separated and that he was having difficulty breathing), Christopher was rushed to intensive care. Within twelve hours we learned just how determined a fighter he was. Christopher stopped breathing, went into seizures and developed the most severe case of jaundice the hospital had ever seen. He was kept in the unit for two weeks, then allowed to come home, with daily trips to the labs to monitor his jaundice.

Overall Christopher was a very healthy child; he never had many childhood illnesses. At nine months old, we learned that he was legally blind, and he was fitted with glasses. We were told it was probably due to either the lack of oxygen at birth or the jaundice. Now I question that completely.

At age three, Christopher started preschool under the visually impaired program, and we began to learn how severe his handicaps were. He did not start walking until he was two, and he did not start talking until almost two and a half. After extensive testing we learned he was not only legally blind (although he could see with corrective lenses) but he also was profoundly deaf in his right ear and had monitory loss in his left ear. He was also diagnosed as motor and speech delayed and learning disabled. This was such a shock to us, but what amazed us more was that these disabilities did not slow Christopher down.

Christopher was in special education programs throughout school. All he wanted was to be like the other children. He never saw himself as disabled and we never treated him that way. He was teased and taunted by many classmates but he would just look at them and say, "I want to be your friend." He was so full of love and wanted to share it with everyone.

During Christopher's freshman year of high school his gym teacher named him manager of the Junior Varsity basketball team. What this did for Christopher, we cannot put into words. He never missed a game or practice, until January 1995. In his junior year he was named manager of the varsity team. He lettered each year as manager and wore his letter jacket with so much pride.

Christopher was very small for his age. During his sophomore year he was seen by an endocrinologist who determined that his pituitary gland had never formed, and that his thyroid was not functioning, so he was not producing any hormones. Christopher was placed on growth hormones, and later introduced to male hormones after his growth plates had sealed over.

Christopher gave himself injections daily. He was given contact lenses (retiring his bottle cap glasses) and his hearing aids were removed because they felt that he was using what hearing he had at its best. Christopher's high school years were becoming a dream come true for him.

Early in his senior year, Christopher complained to his typing teacher about numbness in the index and middle fingers on his right hand. This continued for several weeks and finally we scheduled an MRI of Christopher's brain on Thursday, January 19, 1995 at 3:30 pm. The test was to be approximately one hour long. By 5:30, I had an awful feeling that something was wrong. Little did we know that what was going on behind closed doors during those two hours would change the course of our lives forever.

The next evening we went to our doctor's office and I could tell by the look on his face that something was wrong. I asked him the question that no parent should ever have to ask their doctor, and I will never forget those five words, "Christopher has a brain tumor." After a scan of his spine, the doctors determined that Christopher had a tumor from the brain stem down to the Thoracic-5 area and it was located in his spinal cord. This meant the tumor was approximately 15 inches long and encapsulated in the cord itself.

We went to New York City for surgery where we were told that the tumor was a benign growth, that no doubt it had been there for many years, and that Christopher's body had adapted to it. The tumor was very rare — only 150 tumors of this type were diagnosed per year worldwide. We were told we would see full recovery and Christopher would be fine.

Six months later the tumor came back. After Christopher's second surgery, parents in my area asked how many children were being diagnosed with Central Nervous System (CNS) Cancer. (Up to this point we had never been told Christopher had cancer and I did not feel we were a part of this group of parents because we were not affected by cancer!)

Then six months later the tumor came back again and I started asking how could this be a benign growth? We were told that after Christopher's third surgery it would be best if he had radiation to try to slow down the cells. We contacted a local radio-oncologist who agreed to do the radiation treatments at home. That is when the real truth came out. The radio-oncologist informed us that a new pathology had been done to determine why this growth kept returning. It was an aggressive mixed glioma and the prognosis was not good. In August 1996, I attended one of the meetings with the parents who were questioning the number of CNS cancers.

In April 1997, several of these families decided that they were going to file a lawsuit against Eastman Kodak because they felt the corporation was to blame for what was happening to their children. We considered the same thing but, as a mother of a handicapped child with cancer, I had learned that you need to ask a lot of questions. I started questioning not only our local health director, but also the attorney who had offered to file the lawsuit on behalf of the families. What proof was there for such a lawsuit? I had just finished reading the stories of Woburn, Massachusetts, upon the recommendation of Diane Hemingway and said, we can't just start filing lawsuits against a company unless we have definite proof. The attorney could not even give me the name of an epidemiologist who would back what he felt were the chemicals in question. From that point on, it became a very sad situation.

Seventy-one families had been affected and only six were named in the lawsuit. The attorney told the families who were filing the lawsuit not to talk to the families who were not participating. This put a barrier between all of the parents when we needed each other most. I still did not agree to filing a lawsuit against Kodak. Comments were made such as, "We know you won't file because your husband works there." My husband had been at Kodak since 1978, but if we knew for sure that Kodak was responsible for what happened to Christopher, we would be the first to step up and pressure them to take the blame.

I became educated about the potential causes of these cancers. I told myself that what needed to be done in our community was to research the potential causes and to educate families to these potential hazards. In September 1997, I formed a nonprofit organization called Angels of Hope Clearinghouse of Information for Rare Childhood Cancers. I was able to get the federal government to look into what we felt was a high incidence of cancer in our community. I started researching hazardous waste sites, chemical spills, industrial sites, water ways, the railway system and any source of chemicals our children could have been exposed to. I created a web site to make this information accessible to a much larger population. I campaigned national television networks, radio stations and newspapers, asking them to hear our story.

Meanwhile, we were facing the fact that at any time Christopher could loose his battle against cancer. This kept me going — knowing that I needed to get answers so that no other family would have to go through our living hell. I was able to get the attention this issue needed and people were listening. But a great deal of people still were not listening, just as we had not listened before.

In January 1998, Christopher took a turn for the worse and we were told we would be lucky if we had him through the summer. I threw myself into the pursuit of answers even more.

By late June, Christopher was under the hospice program, on a morphine drip, in full renal failure, and it was just a matter of days before he would go into a coma. On June 23 at midnight Christopher broke down and started crying and the floodgates of his fears opened up. I asked him if he wanted me to finish the journal that he had been trying to write, and he said, "No that was all right." But he did make several requests. He wanted to know if a movie could be made of his life so that people could understand what he had gone through. Then he asked me to please not give up looking for answers as to what had possibly caused his cancer, so that no other child would have to go through what he had. Through his tears there was a plea to me that I will never forget. So I promised him that I would not give up.

Who would have ever thought that numbness in two fingers would make us have to say goodbye to our "Special Angel" three and half years later? On June 30, 1998 at 9:00 am, Christopher lost his valiant battle against Central Nervous System cancer. Christopher had been a determined fighter both in the beginning and then in the end, and would never say, "I can't." So, I have said to myself that I would carry on in his memory. I will never say, "I can't" and I will be just as determined a fighter as Christopher was. I will continue to pressure all sources of these potential hazards to our children, until the day I go to join my "Special Angel," Christopher.

— Written by Debbie Cusenz

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