After months of frustrating ER visits for high fevers, Adelaide 'Addie' was diagnosed in November 2015 with Hepatoblastoma, a rare pediatric liver cancer. It was just four days before her 2nd birthday. It is estimated that only one out of every million children are diagnosed with Hepatoblastoma and it is typically found in children under three years old. At the time of her diagnosis, Addie had a grapefruit size cancerous tumor in her liver. We were in Colorado for Thanksgiving visiting family and took her to an urgent care children’s hospital because her pediatrician was not able to find the cause of the symptoms. We were stationed with the Air National Guard in Fairbanks, Alaska, which has no treatment centers for pediatric oncology. So, we stayed in Denver and sought treatment at Colorado Children’s Hospital in order to be at a top-notch facility that was also near extended family. Addie’s sister, Amelia, was just six-months old at the time she was diagnosed and we needed all the help we could get.
Addie fought a fast-spreading disease with grace. She shared her contagious smile and joyous spirit with everyone she met, even during the most difficult treatments. We lived with family because we needed the help, but truly it made every day better for Addie because she got to spend time with the people she loved most. About halfway through Addie’s treatment, her liver tumor appeared to be chemo-resistant and she was fortunate to receive a full liver transplant. We were truly grateful and moved our life from Alaska to Colorado so she could continue treatment. 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 at home and shower her with love. The uncertainty of our jobs or where we would live seemed so inconsequential compared to what she went through for 13 long months.
We are supporting the Children’s Cancer Therapy Development Institute (cc-TDI) because we are determined to help provide more options for children like Addie in the future. It will be her legacy and those that cared for her to continue fighting for this desperate cause. The lab is pioneering research for Hepatoblastoma and has an amazing and dedicated staff. We came in contact with Dr. Charles Keller, founder of cc-TDI, when Addie’s metastasis became chemo resistant and we were searching world-wide for any new research developments that could save our daughter. There was very little to be found in the way of progressive research because Hepatoblastoma is so rare. We wanted to create a mouse model to test treatments while Addie was still alive, but her disease was too aggressive and we never got the chance. Donating Addie’s tumor for a live tissue mouse model and funding Addie’s Research project will be the lasting mark she leaves on this world. 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 cancer patients through research efforts.
Adelaide was a childhood cancer warrior with astounding strength and resilience; 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 courage, 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.
Children should not have to deal with cancer. Before Addie, We never personally knew a child who battled cancer, but knowing 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.
Dec 3 2013 – Dec 20 2016
We support Children's Cancer Therapy Development Institute (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. We have never felt more empowered as parents and feel honored to be able to play such an integral role in finding a cure.