Childhood Cancer Days 2000, Washington
D.C.
Parent and Childhood cancer advocates in Washington D.C.
Written Testimony
U.S. House of Representatives House Cancer Awareness Working Group
September 15, 2000
Submitted By: Robyn Raphael
I would like to thank Congresswoman Pryce for so valiantly coming forward and organizing today
as well as the Members of Congressional Awareness Working Group.
I come to you today simply as Keaton's Mommy.
This is Keaton T. Raphael, our brown-eyed boy who gave more joy and love to our lives than we
ever imagined. He was the family clown. He was once a happy healthy 4 ½ year old boy who began
having pains in his legs, low-grade fever and general listlessness. Many of the symptoms shared by
other parents today.
On June 20, 1997 we received the shocking news that Keaton had cancer. Specifically,
Nuerolblastoma. For the next nine months Keaton endured 7 cycles of Chemotherapy, removal of
his tumor, several procedures including placement of a central line twice and a double bone marrow
transplant. He was treated at both UC Davis Medical Center and Boston Children's Hospital. We
were encouraged to fly to Boston as a family for Keaton's transplant. Prior to this we fundraised so
we could be together, and were relieved we did. We stayed at the Ronald McDonald House, thank
god for them. On Christmas Eve, Keaton underwent his first transplant, we took this as a great
sign. Between transplants Keaton was able to come to the house. I can still remember our last time
together as a family. Faces were pressed against the windows of the house and I'm sure they
were saying "look at the crazy family from California playing in the snow!" It was a time of joy.
During transplant you have to bathe your child every day due to bacteria. One day after bathing, as
Keaton stood atop his bed, body swollen from the chest tube in his side, he grabbed my face,
pulled me closer and said, "Mommy, you are the Best Mommy and I Love You." I will remember that
as the most defining in my life. He taught me everything about life and love.
On February 20, 1998 we as a family witnessed Keatons very sudden struggle to breathe. As I
grabbed my then 3 ½ year old son and took him out of the room, Keaton took his last breathe in
my husband's arms. It was the last time I saw Keaton's eyes open. He had developed
complications. Keaton was expected to make it, he was fiesty and even the doctor's said, "If any
kid can make it, he can!"
I'll never forget the moment I walked to the room downstairs, pulled the curtain back and
instinctively took his hand, put it to my nose and began to breathe him in. I don't know why, but he
came to me so instinctively I thought he should return to me.
As Keaton's Mommy, I appeal to the House to take action on behalf of Keaton's short, but
meaningful life. He, like many other children are pioneers in "The Fight Against Childhood Cancer."
Many parents and medical professionals here today have eloquently presented before you their
stories, horrific facts and measures of proposed action.
As for my small contribution to "The Fight" I will go home to Northern California and continue to
raise awareness and funds for families. I will never stop until the words "childhood and cancer" are
no longer used in the same sentence. I spend each day loving and missing
Keaton.
We as parents have a bond that transcends time: To paraphrase a statement made from Mrs.
Coolidge's journal entry following the loss of their son:
"You, my son, have shown me the face of GOD Guide me in the way I should go, until
we meet again."
Thank You
