Star light, star bright,
First star I see tonight,
I wish I may, I wish I might,
Have the wish I wish tonight
For years, many of us have been wishing upon falling stars. It’s amazing how a simple childhood rhythm can speak volumes to the oldest of souls. For a falling star is not simply a nighttime wonder- rather it is a unique combination of particles and gases that are providing the most spectacular array of light in the midst of an overwhelming darkness. When we wish upon a falling star, we wish for something we are hoping for—and that hope is the reason we are all here today.
To begin, I want to thank you for allowing me the honor of addressing you today. I come to you not only as a speaker, but as a colleague and a friend who has tread the path that so many of you in this room have tread before me.
At the age of 15, I entered the world of cancer with a diagnosis of Acute Myelogenous Leukemia. After enduring two rounds of intensive chemotherapy, we soon learned that without a bone marrow transplant, my odds of long term survival were slim to none. My diagnosis was grim, but my hope was strengthened when we found out that my brother, Adam, was a perfect 6 for 6 match.
Two weeks after my sixteenth birthday, I received the gift of hope and a gift of life—and ten years later, I can stand before you as a healthy vibrant young woman who has survived a bone marrow transplant.
My fascination with stars began upon being discharged from the hospital, when my oncologist gave me a shooting star pin with the number "88" on the back, indicating that I was the 88th BMT they had done. My doctor called his BMT patients his shooting stars. To him, the transplant patients were the ones who, in the midst of bleak circumstances, shined the brightest and gave him hope.
From diagnosis, through the transplant, in transition, to long term survivorship -there is a certain amount of strength that’s required of bone marrow transplant patients—whether you enter into it with that strength in tact or develop it along the way-- one of the key strengths that we all find is hope.
Hope is defined as looking forward to something with confidence or expectation. Hope can be described in many ways. In our daily lives, the word hope is used often so lightly—as we wish for simple things, such as a new car or that a certain presidential candidate will be elected. For those of us who have survived a bone marrow transplant, we understand the fundamental difference between a wish for a simple preference and that deep hope of survival that drives us on every day.
Hope, as many of you have come to understand, is a vital part of the bone marrow transplant process. For many of us, the chemotherapy brought us to our lowest, sickest point—and for many of us, hope was what we clung to.
The hope we live with every day is made up of many things. Today I want to highlight a few of Hope’s ingredients..
The first, and often hardest ingredient of hope is patience. Patience, for many of us, has continued to be a learning process.
I met Tom a few years after my own transplant. Tom was tall and quiet- He played high school baseball and always had on a different team’s cap to show his enthusiasm. When Tom’s ALL relapsed, he found himself living in the practice of patience. He needed a bone marrow transplant and as the son of an American/Ukrainian couple, Chris remained on the transplant list for many months. The longer he waited, the more hope he had that he would one day find that perfect match- the more hope he had that he would be out there playing baseball again soon.
For Kristy, she had her match right away. Her sister fit perfectly. Kristy is 16 and, according to her sister, she has the attitude to prove it. After the transplant, Kristy was thrilled to return to her world of hair, shopping, and boys. But she started to develop some odd symptoms- and soon learned she had a chronic form of GVHD…. Disappointed, she grows in hope and endures this new struggle in patience…she is always growing in hope that new methods of dealing with her chronic GVHD will soon be discovered.
As time tests our patience, community strengthens us as we wait. And Community is the second ingredient of hope. Indeed, Community can be one of the most powerful and beautiful components of hope.
A friend of mine, Cathy, was recently divorced when she was diagnosed with AML. Cathy’s sons lived states away and her friends seemed to disappear. At first, she turned to a local cancer community group for financial help- it was there that she found activities and events that allowed her to meet others who understood and could offer a helping hand—When I met Cathy, I had a hard time believing that her frowning face would ever crack a smile. When I saw Cathy the day before she finally entered the BMT unit, smiling was all she could do—she knew she had a community of hope supporting her throughout the process.
Perhaps the most important ingredient of hope lays not in the struggles of patience or the camaraderie of community, but rather, it is found in the attitude towards life that we carry with us every day. So I submit to you today that the third ingredient of hope is Joy.
For without joy, we cannot celebrate the small moments in life or fully feel the celebration of moments of triumph.
The purest moment of joy I have ever seen was on a little boy’s face, Jon, when he received his make-a-wish gift…a puppy. Jon had already endured one transplant and at eleven years old he would have rather been out playing than face another one. Jon loved to spend his days in the hospital playing Nintendo and using his IV pole as a skate-board. When Jon was at his weakest though, he received his puppy – who was “sterilized” enough to enter the BMT unit- and no, they did not put the puppy in the autoclave. The joy that that puppy brought was what provided Jon the inspiration he needed to face his second transplant.
We all have those moments of joy in our lives, every day. We all know the joy that came with taking off our mask in public… or removing that hat for the very last time. We all know the joy that comes with the news of a match and the hug of a friend. Joy is what helps us endure, makes us reach out, and continues to build us in our journey of hope.
Hope requires many ingredients, but what we hope for is so powerful. Our hope comes from our own continuing stories of survival. Our hope comes from the inspiration of others who have gone before us. Our hope is for the cures that our stories will someday bring to others.
I’ve only shared a few stories today, because the main stories of hope are sitting to your right and to your left. In fact, they are sitting in the very seat where you are seated. As Van Gogh once so eloquently said, “For my part, I know nothing with any certainty, but the sight of stars makes me dream.” You are the stars in this constellation of hope and the sight of you makes me dream for the future of bone marrow transplant patients.
As I conclude these thoughts, I want to point out that a shooting star is merely a meteor that is struggling against the earth’s atmosphere. It is within that struggle against the darkness that the meteor produces such a beautiful and rare light.
I, like many of you, have had many rare lights in my life:
For Tom and Jon, their struggles here on earth ended- but the light that their lives produced still brings joy to many. Indeed, the inspiration of their stories have inspired thousands to donate time and money towards research and support efforts.
For Kristen and Cathy, they are still facing the initial challenges of survivorship through physical and emotional struggles. They are still learning to shine.
For myself and other long-term survivors, we are trying to shine brightly so that those who come after us will see that there is hope after a transplant.
For those of us in this room tonight… we are all rare lights- we are surviving and we are shining.
The truth about stars is that they function as far more than viewing pleasure. Some provide direction. Some provide light and warmth. Some provide a mystical feeling of hope as they go shooting across the night sky. No matter what happens in life, no matter how our function, we are still stars... still part of a larger constellation of hope.”
Star light, star bright,
First star I see tonight,
I wish I may, I wish I might,
Have the wish I wish tonight
My wish for you and for those who will follow this path after us is that they will see our larger constellation of hope and aim for the stars.
