2003 Light the Night Speech

I am happy to see such a crowd today. Now I'm sure there are as many reasons to be here as there are people. Some of you might have come to enjoy a nice lunch away from work. Maybe some of you saw this as a great chance to get involved in your community. But, one thing I am fairly certain of, is that you have all known someone, either distant or close that has been affected by a blood related cancer.

When I really started thinking about it I've known a lot of people throughout my life that have felt the impact of these diseases. My Uncle Robert, was a former minor league baseball player. My husband's grandmother, Virginia, an East Texas Sunday School teacher. Colin, a likable 9 year-old boy at our church. Selena, a young college coed, who was just getting her life together. Scott, a charismatic rising star in the software industry.

What could they possibly have in common? Five people that seem so very different on the surface and yet just one little drop of blood holds the common denominator. Cancer. It doesn't discriminate or care who it targets, but its effects are sweeping and absolute. Blood related cancers, such as leukemia and lymphoma, simply sneak in without us knowing how, when or why and change our lives forever. Even those who don't live with the cancer inside of them.

All of these people have epic, heroic stories, but there is one story I'd like to focus on today. And it is about my daughter, Hope. It is her story, the story of Hope, that has brought me here and has changed my life forever.

I wish I could to say she was just an ordinary little girl, but that is like Peter Pan referring to Tinker Bell as quite a common fairy. She loved every animal on four legs and had half a dozen Disney videos memorized. She once interrupted a far too serious guitar recital by loudly saying, "Hey Grandpa, I tooted!" She had the blondest hair and the bluest eyes and a smile that would cause the most callous and stoic hearts to melt. She was extraordinary. But the truth is there is no such thing as an ordinary two-and-a-half year old, if you have ever met one you know they are all extraordinary. My daughter, however, accomplished great things and I realize looking back on our family's experience with cancer her life is inspiring.

Think back for a moment to the fears our society had as we approached the year 2000. Y2K seemed to be all we heard about. It is funny how much we all worried, and what we worried about, especially in light of what happened in September of 2001. But on that New Years eve, my family celebrated with friends watching the TV coverage ring in the New Year around the globe. We let our two daughters, Navy and Hope, stay up until midnight and blow their paper horns and wear sequined crowns. Any glimmer of worry that existed about Y2K vanished in the festivities. Little did we know for us, it would be a catastrophic year. Our charmed life would forever be changed and perhaps at that party, the cancer cells might have already been growing.

In late spring, Hope began to change. I thought she was just growing or maybe I just kept her too busy. I could find many excuses to explain away why my 21/2 year old was needing to be carried, or needing a nap, or she was just being grumpy. It was when all of these symptoms progressively got worse, and we had to cancel an Easter weekend trip, I knew something really weird was happening. After I dropped Navy off at school, I took Hope to the pediatrician. Of course, as Murphy's law would have it, she was the picture of health in his office. The pediatrician, however, could tell I was sincere in my worries and ordered a blood test "just to rule anything out." After the first finger prick, the nurse came back into the room, and said she needed to do it again, that something had gone wrong with the sample. I could see by the look in her eyes however, and her ashen color, something was wrong. When the doctor opened the door a few minutes later, I knew. Whatever he was about to say was bad news. He stood there no longer a doctor, but a parent, and begged "I would get down on my knees and pray this is not true, but I think Hope has leukemia."

Some of you here know the tornado that follows those words. The need to run while your feet are nailed to the floor. The storm of emotions and the loss of control. Words like that cut to the heart of your fight or flight instinct. Her doctor felt the panic too. You see, he could remember back to when those words were a death sentence. When most of us were children, the prognosis for a child afflicted with Leukemia was slim to none. But he also knew that over the course of his career, research and studies, many of which have been funded by the Leukemia and Lymphoma Society, had won huge victories for most of the little patients diagnosed.

About two hours later my husband and I were carrying Hope into the Children's Hospital of Austin and we mustered our courage and promised we would fight this for her. It seemed at the time that we could, that we should, at least be able to do something. Our heads hurt and our hearts ached as we walked through the hospital doors to a whole new world.

Now see the problem was we didn't know what to do. We knew nothing. We weren't involved in causes like this before because it always seemed like this would not happen to us. Not our family. But luckily the people that waited for us on the other side of the hospital doors were nothing less than angels. They did know what to do. This was there job, but not just their job, it was their calling. Thank God they had listened in their high school biology class. Thank God they missed all of those parties in college, because they were studying. Thank God people believed a cure was worth finding and funding, before we knew we needed it. Our determination to fight this fight for our daughter was met with "we will help you." We were buoyed up, and the coming days were a crash course in pediatric oncology.

I remember getting off the elevator that first night and walking toward the oncology floor and seeing the many signs and posters for various cancer related charities. I realized they weren't hung to ask for donations, they were there to offer help and hope. Hope and our family was suddenly on the receiving end of a lot of caring. We were getting a lot of friends asking how they could help; what charity made a difference. When we asked her oncologist what were some worthy cancer charities, the first one of several he named was the Leukemia and Lymphoma Society.

He knew that since it's formation in 1949 it has operated with a simple, two part mission: to find a cure and to improve the quality of life for patients and their families. We couldn't have said it better ourselves. That's what we wanted right then, a cure and her to be happy.

The first time I felt the Society's impact directly, was late in the first week when I called Navy's teacher to tell her the details of what our family was facing. Surprisingly, it was an easy conversation, because another parent at the school was training for the Team-in-Training marathon and she provided the whole school with educational material about Leukemia the day after Hope was diagnosed. It was a whole segment of friends that we didn't have to endlessly explain what Hope was facing.

The product of years of research was the road to a cure. It was called a "treatment protocol," which essential boils down to what she would swallow, be injected with, or be shot at in order to make Leukemia disappear from our lives. The scientific method of carefully measuring successes and failures had improved the overall cure rate for children with leukemia to close to 90%. Hope had some special risk factors in the way her cancer presented that gave her more like a 65% chance of long term survival. Those kind of grades normally wouldn't be acceptable in our family, but we would take what we could get. What we soon realized was that those numbers simply don't matter, because everyday was 100% of a fight.

Cancer can take away what seems like everything, but it can't destroy the spirit of a child. Quality of life was equally as important to the medical team as was the treatment. They gave shots in Minnie Mouse costumes on Halloween. The doctors or nurses would come into hospital playroom to unobtrusively check on progress, and not leave without Play Dough on their hands. She learned big words like "chemotherapy" and "radiation", but she also learned to love silly hats. She loved the Wizard of Oz, the tale of an ordinary girl in an extraordinary world. She celebrated her third birthday dressed as Dorothy with a yellow brick road cake and wicked witch pinata. She loved Sunday School. She still grew. She still played. She still did what other little girls did, she just often wore a hat and was sometimes attached to an IV pole.

We never doubted Hope would survive cancer. We worried about long term effects, relapse, educational modifications; all those terms that go along with survivorship. We came to see the cancer experience as something Hope would look back on as a small and relatively insignificant part of a long and full life. We were wrong. Our family had been to a Thanksgiving celebration with other families of children with cancer. We all had a wonderful time: festive food, clowns and new friends. It seemed like things were going great and Thanksgiving had never been so poignant. Hope went to bed that night. Sometime during the night her soul tiptoed away from her body into the arms of God. Just seven months after she was diagnosed the gravity that held Hope to this earth failed. She had died. We woke up without Hope

It would seem that her story should end there, but it doesn't. It can't. Her life continues to inspire people to do what they can in the battle against cancer. Her short life made an impact on the world. Her life is woven together with those that died before her and those that survive after her, and with those of us who demand a cure is possible.

My husband and I are the cancer survivors who you read about in the obituaries; whom the patient is survived by. Two of many parents that quietly remember birthdays, diagnosis dates or when they might have started school. We are, in many ways, lucky because it was leukemia. Because of those great success rates we were gifted those seven months and a hope she could be cured. However, seven months and hopeful optimism won't console future patients and families. They need a cure.

Now at Light the Night you will get to write a name of a person for whom you walk for on a sticker. If you are one of the lucky ones out there without a name, you can borrow one of mine; they are, again, Robert, Virginia, Colin, Selena or Scott. The last name, Hope, I want you to write on your heart.

- Sharolyn Browning
Leukemia/Lymphoma Society
Light the Night Kickoff Luncheon Speech
August 20, 2003