Open atmosphere and funding needed for cancer victims

It is heartbreaking when anyone is afflicted with a serious medical condition, and this is especially so when that person is a child or young adult with their entire life ahead of them.

Recently, I received just such news when a friend called to tell me a young woman we knew was no longer in remission from a rare form of cancer that was diagnosed soon after she graduated from college.

Why this girl? Such questions, of course, have no answer.

Although I had not seen this girl for several years, she was never far from my mind. We met when I was her college counselor, and the essay she wrote for her applications was one of the most beautiful and sincere I had ever read.

She was to describe three things that were most meaningful in her life and why. The objects she chose were a childhood Teddy bear, a cross and autumn leaves.

She went on to describe the bear as a symbol of family, the cross as a symbol of her spirituality, and the leaves represented beauty in the natural world. Each object she described was complimented by one of her watercolor paintings.

The sad news this lovely young woman's cancer had returned came at about the same time Elizabeth Edwards made a similar announcement, declaring she wanted to go on with her life, not stop short because the cancer had returned.

I applauded that decision for deeply personal reasons. My mother died of cancer when I was 6 years old, leaving three small children. At the time of her illness, cancer was rarely spoken of. The stigma attached to the disease made it appear as the plague or a contagious disease.

As her illness progressed, relatives from around the country arrived to keep a vigil. Though well meaning, they often added more stress to an already difficult situation.

My brothers, ages 4 and 18 months, lived in an atmosphere of constant tension. We were kept in the dark about what was going on and never told she was dying.

Children were lost in the shuffle; kept outside the action. Fear festered.

When the ambulance came to take her for the last time, my brother and I sat huddled at the top of the stairs. I do not know if we ever said goodbye. The heavy footsteps and the underside of the stretcher came back in nightmares for years.

The last time we went to "see" our mother was on a trip to the hospital in New York. My brothers and I said goodbye, waving at a window many floors up; children were not permitted on the cancer ward.

She was gone, and people in the neighborhood began to refer to us as the poor cancer children. I did not know what cancer was, compounding growing fear and anxiety.

One of my younger brothers died of cancer as well, leaving a wife and small children. He had decided, while ill, to leave his place of business and spend every available moment with his children.

After a valiant series of treatment that included an autologous bone marrow transplant, it became evident he might never live to know his children as adults. His last years were spent building intimacy and positive memories for his children they might carry for a lifetime.

Of course, it was difficult as the children experienced his physical and emotional changes when treatment option after option failed. Now young adults, they have come to appreciate the time spent with my brother and the indelible memories to be cherished.

One of my most poignant experiences as a young teacher in training was seeing the way an educational community supported a little girl and her mother.

Years ago as a substitute teacher in San Francisco, I was sent to a program that was reputed to having one of the most difficult populations. This school was headed by a principal who was often referred to as an ogre. How deceiving reputations can be!

The week I spent at this school was one in which a little kindergartner returned after treatment for a cancerous brain tumor. She had lost all her hair and wore a colorful scarf covering the baldness.

The children, who were a hardened lot, had been prepared for her return, and they welcomed her eagerly. Later, I had an opportunity to speak with her mother, a single parent on welfare. She told me how supportive the so-called "ogre" of a principal had been and without the support of the school, she would have had nowhere to turn.

I vividly remember one of my last visits to my brother in the bone marrow unit. Two children were there. They couldn't have been more than 5 and 8 years old. They sat on the ground right outside of one of the bone marrow isolation rooms. They peered into the glass door from the hall. On the other side of the door, sitting on the floor, was Mommy.

"Mommy" could not have been more than 25 years old. The children looked so vulnerable sitting there, unable to touch their mother. Yet how much better it was for them to see their parent face to face then standing on the street and waving goodbye as we did those many years ago.

We have come a long way, and there is much further to go. The kind of isolation and stigma about cancer has virtually disappeared.

Advocacy groups and individuals provide accurate information about cancer. Groups run by the American Cancer Society and other organizations are open to children and adults with ill parents, siblings or a spouse.

These groups do wonderful work and prevent the isolation and stigma that many experienced in the past. Let us hope this new open atmosphere includes the funding so desperately needed in the war against cancer.