Why we exist: guest blog by Christina Stiverson

Recently, I had the opportunity to meet with Christina Stiverson and ask her a few questions.  Christina recently lost her daughter Addie to Hepatoblastoma, a rare pediatric liver cancer, but she refuses to give up.  Her fighting spirit and selfless passion for ensuring all children survive cancer embody why cc-TDI exists.  Read her moving answers to my questions below.  Tell us about Addie, about your family, your story… Adelaide was a childhood cancer warrior; 3 years and 17 days was how long we were given with our precious gift.  Addie truly made the world a better place and taught us how to really smile, laugh and cry.  She exhibited extraordinary strength, kindness and dignity choosing to leave us as beautifully as she came.  Addie experienced more in three years than many do in a lifetime traveling to 11 states including Honolulu, Hawaii and Barrow, Alaska. She saw the Northern Lights at 20 below and went to the top of a 14,000ft Colorado mountain.  She loved visiting the PEZ factory in Connecticut and cheering at the Disneyland parades. Adelaide was photographed with her mom, grandmother, and great grandma. Her favorite holiday was Halloween and she loved simple things like swings at the park, jumping on the bed with cousins and story time at the library with her sister. Addie fought a fast-spreading disease with grace.  She shared her contagious smile and joyous spirit with everyone she met. In November of 2015, after months of frustrating ER visits, Adelaide was diagnosed with a rare pediatric liver cancer called Hepatoblastoma. We were living in Alaska at the time, but on vacation in Colorado for Thanksgiving.  We decided to remain in Colorado near family and immediately began our yearlong journey at Children’s Hospital in Colorado.  We never returned to our life in Alaska. We lived in the hospital, with family, in a rental home and recently bought a new house. About halfway through Addie’s treatment, her liver tumor appeared to be chemo resistant and she was fortunate enough to receive a full liver transplant. She consistently defied the odds at every step and was home with us just six days post-transplant, running around looking for Easter eggs.  However, two months after her transplant, the cancer aggressively spread to her lungs and five months later it metastasized to her brain. After 10 rounds of chemo there was nothing more we could do but comfort her.  What do you think people need to know about childhood cancer?   Children should not have to deal with cancer.  Before Addie, I never personally knew a child who battled cancer, but these kids will change your life forever.  Addie gave more to us than we could ever give to her and for that we are eternally grateful.  Addie’s tumor tissue and research funding will help our team search for a cure for other children like her.  That will be the lasting mark she leaves on this world.  Her remarkable courage and love for life inspired everyone not to take a single moment for granted.  Do you believe finding a cure for childhood cancer is possible? At this moment I can only picture Olaf (the snowman from the Disney movie ‘Frozen’ that Addie loved so much) saying ‘Yeah, why…” which is a question I have been asking myself for over a year now.  Why wasn’t our daughter among the percentage of Hepatoblastoma cancer survivors?  I can only believe it’s because she has a higher purpose to inspire others not to take a moment for granted and to save future children through our research efforts.  How did you first learn about the Children’s Cancer Therapy Development Institute? My mom discovered some notes online from cc-TDI’s nanocourse featuring Hepatoblastoma, and from there we got in touch with Dr. Keller.  He immediately responded to our cry for help and brought us into the cc-TDI family.  As a parent desperate to save your child you want to know any new developments that are out there.  Why do you support cc-TDI? We support cc-TDI because we believe that their well rounded team of brilliant individuals coupled with some of the most determined parents involved with cc-TDI will continue to find cures. With a non-profit lab, their work is transparent and we can see directly where our money goes. I have never felt more empowered as a parent and feel honored to be able to play such an integral role in finding a cure.   The “Why we exist” series is comprised of guest blogs from people and institutions that embody why the Children’s Cancer Therapy Development Institute’s mission to make all forms of childhood cancer universally survivable is so important.​ If you would like to learn more about the work the Children’s Cancer Therapy Development Institute is doing to initiate clinical trials for sarcomas, please visit our website or contact Erin Benson at erin@cc-tdi.org  

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