Story and photos by Jan Osborn.
“Christmas Eve 2009 an emergency scan showed tumors were dominating. We settled in high above the skyline in that corner room at Children’s with a view of downtown when Carson whispered words I’ll never forget. “Mama, yeah buddy, I thought I was going to make it… me too buddy, me too. Mama, yeah don’t let them bury me… I won’t let them bury you, I promise. Mom, yeah, make sure they study those tumors in my brain, because IF those tumors can help some kid, someday not die from cancer like I am, I’d like that, it’s hard to have cancer, i’ll do that, bud, I promise you, I will do that.” — Annette Leslie
Early Fall 2006, Carson Leslie was a 14-year old high-school freshman busy with football, baseball, golf, girls and school when he had time, when one afternoon he told his mom that he was feeling weird. Since weird is a little difficult to diagnose, she wasn’t worried, but took note. Then for three weeks, back and forth to the doctors, specialists, blood work, tests, and sometimes at school, Carson announced he was feeling REALLY weird and thinks he was seeing two of everything.
He and mom jumped in the car, threw on the flashers and headed straight to Children’s Medical Center ER. Two hours later and one revealing scan, Carson’s mom and dad were invited down the hall to a private room where they saw that scan with a golf ball sized tumor settled in the back of his brain. Hearing words like brain tumor, cancer, neurosurgeon, oncologist, chemotherapy and radiation from the oncologist in that private room – knowing the fight was his, Carson and family carried by faith, family and friends pressed forward for three long years, and January 12, 2010, Carson took his last breath.
In 2010, the Carson Leslie Foundation (CLF) was launched honoring Carson’s last whispered wish and the foundation is dedicated to raising funds for research leading to a cure for pediatric brain cancer and enriching the lives of teens in the battle. CLF’s research is collaborative with an emphasis on the development of transformative cures for medulloblastoma, the most common type of the number one disease killer of children in the US, and the disease that claimed Carson’s life.
The Foundation got right to work and within 24 hours of his death they received an email from an investigator, “We received the tumor samples this morning…we just completed the injection of viable tumor cells into the brains of 10 mice…I will let you know the progress of this model development…please accept my sincere sympathy.”
In her quest to honor Carson’s whispered wishes, seeking solutions to the horrific problem that childhood brain cancer is the deadliest disease of our nation’s children, Carson’s mom Annette sought trailblazers, influencers, principals and mentors for advice and guidance in the space known only to her through her son’s valiant fight for life.
A few months after Carson’s death, Annette was invited to serve on the $3 Billion Cancer Prevention and Research Institute of Texas (CPRIT) Advisory Council on Childhood Cancer (ACCC). CPRIT was created in the wake of a statewide referendum in 2007, when Texas voters approved $3 billion in bonds, in increments of up to $300 million a year, to fund cancer research.
As a former school teacher, Annette was an eager learner, always willing to ask questions from experts. Now, finding herself surrounded by experts in oncology, she attended every CPRIT meeting possible, talked about childhood cancer every chance she had and told Carson’s story to anyone who would listen.
When she began her service on CPRIT’s ACCC, barely 3% of the funds were invested in childhood cancer. Today 12% is invested in childhood cancer which is triple what the federal government invests in childhood cancer research. In 2017 and 2018, 23% of CPRIT’s portfolio reflected childhood cancer research.
“It’s been an opportunity of a lifetime to serve on CPRIT’s ACCC,” said Annette. On November 5, 2019, Texas voters approved a ballot measure to extend the life of CPRIT by doubling the bond dollars that can be issued to support the agency. This potential $6 billion in funding made CPRIT the largest funder of cancer research outside of the Federal government.
In 2016, when brain cancer surpassed leukemia as the deadliest disease of our Nation’s children, CLF’s board recognized that federal, state and local awareness with action and funding was necessary to combat the awful disease.
Carson Leslie Foundation is recognized as a leader on the federal level and has worked closely with Congressman Michael McCaul (TX) who lost his best friend to cancer in the fourth grade while attending St. Mark’s School of Texas. When Representative McCaul became an elected official, he remembered his friend and took childhood cancer to the Hill, launching the Congressional Childhood Cancer Caucus (CCCC). He received a copy of Carson’s book, Carry Me, in 2010 and invited Annette to speak at the inaugural CCCC in Washington DC. Annette recalls walking into the McCaul’s Washington, DC living room that was packed with dignitaries, congressional members, senators, and heads of pediatric oncology organizations. In ten short years, under the steadfast leadership of Texas Congressman McCaul who coalesced the CCCC, the senate and the childhood cancer community, our nation now has four new laws benefiting the overall state of childhood cancer.
Six years ago, CLF launched The Golden Toast in Washington DC to honor the accomplishments of the bipartisan work of CCCC. Gold is the awareness color of childhood cancer, and the Golden Toast is an evening where the childhood cancer community and CCCC come together and “toast” the accomplishments of what can be accomplished when working together. The Golden Toast is held each September during Childhood Cancer Awareness Month, a time to recognize the children and families affected by childhood cancer and to emphasize the importance of supporting research.
Today, Carson Leslie Foundation is helping kids fight cancer in their collaborative mission: Encourage, Research and Awareness/Action. To encourage teens in the battle against cancer, CLF built Carson’s Corner at Children’s Health Dallas, a little corner of Children’s-Health for teen cancer patients to gather in their very own space. Newly diagnosed teens receive an Under Armour Backpack filled with items for extended hospital stays and several times a year, they load up a limo filled with teen cancer patients head for a night on the town in Dallas!
Awareness and Action is the third component in CLF’s collaborative mission. Through CLF’s advocacy, Federal, State and Local organizations have expanded their roles in researching childhood cancer.
Carson Leslie Foundation and CPRIT are hosting Researchers RoundUp on January 12-13, 2020, together rounding up Texas childhood brain cancer investigators to discuss, identify and encourage collaboration. January 12, 2020 is the 10 year anniversary of Carson’s death and the Foundation thought it most fitting to honor Carson’s valiant fight for life and last whispered wish to “help the next kid.”
For more information about The Carson Leslie Foundation and how you can get involved, visit their website.
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