When my daughter told me she was participating in a fundraising project for the Leukemia and Lymphoma (LLS) I couldn’t have been prouder. LLS has been providing funding and support that has turned what had been a virtual death sentence for so many children, into hope.
She was nominated as a candidate for the Leukemia and Lymphoma Society’s Man & Woman of the Year competition in Georgia, where she lives. Hundreds of candidates across the country have taken up the challenge in their individual states. It’s something I was asked to do in Rhode Island many years ago.
Winning doesn’t matter. What does matter is that every penny raised is another step in the battle for hope, for dignity, and for life. Of the 66 FDA approved drugs for blood cancers, LLS has played a part in funding 56 of them.
For more than a decade I was a storyteller, communications manager for the Rhode Island Blood Center. I would meet with and tell the stories of so many inspiring individuals, many facing life threatening diseases and conditions, among them children suffering from leukemia.
I was privileged to come to know Dr. Edwin Forman, then head of oncology at Hasbro Children’s Hospital. He would emphasize how the odds had changed and that recovery was becoming a much greater possibility because of the research and support from individuals and organizations like LLS.
Families and children were fighting through the tears, and with newfound hope becoming more determined and focused on recovery.
A few weeks ago, when I wrote the above, as a letter to friends and relatives to let them know how proud I was of my daughter Sandi’s fundraising effort, I also wrote of possibilities.
I wrote about Eric French, who battled leukemia as a teenager, while aspiring to become a fulltime musician. His love of guitar, love of life, and the miracle of research and treatment brought him to Berklee School of Music, where among his teachers was Livingston Taylor. A photo I cherish is one of Erik, Livingston, and myself (guess which one is not the musician) at a dinner honoring blood donors.
Eric (http://www.ericfrench.com/), nearly two decades after battling leukemia, has recorded several albums, performs from New England to San Diego, and on his Facebook page calls himself a “guitarslinger/ songwriter rock n’ blues set off by an introspective acoustic streak.” I like to think of him as a leukemia survivor, a musician, a father, and an inspiration.
And I wrote of Kelsey Hobbs.
Kelsey was among the first people I met when I went to work at the Blood Center. She had just undergone a marrow transplant, her hair changing color, her dreams put on hold. She wanted to go to a four-year school, but instead went to the Community College, and upon graduation she went to Wheelock in Boston. Kelsey wanted to help people who had faced the same trauma that she and her family had faced. She became a Child Life Specialist at Hasbro Children’s Hospital in Providence, and for 14 years had an enormous impact on the lives of scores of children and their families.
Kelsey was a beautiful young woman, with an infectious smile, a love of roller derby (she worked as a volunteer), and five years ago became a beautiful bride, marrying Ryen Mullen. Each time I would tell Kelsey’s story I would literally feel chills up and down my spine. She was so inspiring.
Not long after I initially wrote that letter to friends and family, talking of possibilities and telling Kelsey’s and Eric’s stories, Kelsey lost her battle to Aplastic Anemia, and at the tender age of 36 she passed.
It’s difficult for me to find the words to express my sadness over Kelsey’s passing, but also my gratitude to having had the opportunity to meet this incredibly inspirational woman. I will always remember her smile.