Welcome To My Big D Climb Personal Fundraising Page
In November 2015, my brother and his wife (Bill & Jen) began a journey no parent ever wants to take. Their beautiful, spunky 2-year old (Elizabeth Grace—Ellie) started to have unusual bruising. After multiple doctor visits, hospital stays, and tests too numerous to count she was diagnosed with Myelodysplastic Syndrome (MDS). MDS is extremely rare in children and fewer than 10 cases are diagnosed in the US each year. With MDS, blood cells do not mature or function normally. Treatment revolves around managing the disease with blood and platelet transfusions. The only possible cure for MDS is a bone marrow transplant. Unchecked, MDS can morph into leukemia.
In Feb 2016, Ellie received chemotherapy followed by a stem cell transplant using her sister Kathryn’s bone marrow. By May of 2016, we received the heartbreaking news that the transplant had not been successful and the MDS did not go into remission. Even more devastating was the news that the MDS had progressed to acute myelogenous leukemia (AML). After more consultations with experts across the country, the decision was made to attempt another bone marrow transplant after heavy doses of chemotherapy and whole body radiation. Ellie received a 2nd stem cell transplant in August. The preparation was hard on her body and she spent time in the ICU including her 3rd birthday, but in time she rallied. Through most of her treatments, Ellie remained courageous and fought with all of her might. Her quick wit, sassy attitude, laughter, and smile were contagious. She captured the hearts of everyone she encountered including all of her doctors and the hospital staff. In October the family was given the news that the transplant was successful and she was in remission.
Sadly, the joy was short-lived as the AML came back with a vengeance in November. Treatment options had been exhausted and despite the fact that Ellie continued to look relatively healthy other than her hair loss, the doctors offered no hope. Experts across the country were again consulted and the prognosis was confirmed. By late December, the effects of the aggressive AML began to steal Ellie’s spirit and this bright, precocious 3-year-old was slipping away. On January 23, 2017 Ellie lost her battle with AML. While we are heartbroken, the battle is not over and you can help fight this terrible disease. What can you do:
1) Donate blood—blood transfusions are life-saving for many people and Ellie required multiple transfusions during her 15-month battle. These transfusions bought her time with her family and gave the doctors time to consider treatment. Donating is easy. Simply visit a local blood drive or Red Cross donation center. You can even donate in memory of Elizabeth Grace Johnson.
2) Register to be a Bone Marrow Donor: https://bethematch.org
3) Support the Leukemia & Lymphoma Society: my family is participating in the LLS Big D Climb in Dallas on January 27th where we will be climbing 70 stories of the Bank of America Plaza to raise awareness and funds to fight blood cancers—support our team: Be Brave and Cowboy Up: link on top right corner of this page.
If you think this page contains objectionable content, please inform the system administrator.