Before we knew the world of childhood leukemia, and long before bone marrow transplant was a part of our vocabulary, we had sweet little identical twin girls, named Reese and Quinn. The twins were born in Chicago on April 10, 2014. Reese and Quinn were healthy babies who grew into healthy toddlers and then their little sister Claire joined our world in 2016. These sisters are the best of friends and the greatest supporters of each other.
Today, Reese is a 5-year old with an affinity for flamingos, babies, and her family. She is loving and quick with sentimental thoughts and words. She is wise beyond her years and loves helping the people around her problem solve. Reese loves to giggle and laugh, she is always seeking out the opportunity to be silly and fun. This little girl is small but mighty. She is brave and fierce. Cancer will be only one chapter of her incredible life.
She was born a fighter and has always exceeded any expectations for her. I can’t say that December 11, 2017 caught me completely off guard. I said that Reese was a healthy baby and a healthy toddler. We had the most incredible summer before she was diagnosed, full of energy and late nights, my girls didn’t even have a sniffle. But then preschool started and I can tell you that she was not a healthy preschooler. I saw something coming about three months before we were hit. A mom knows when something isn’t right. Reese was diagnosed with JMML, a very rare form of childhood leukemia. It is similar to, but different than, AML.
To come to this leukemia diagnosis, experts across the country — from Chicago to San Franscisco, Madison to Boston — collaborated extensively. Currently, JMML cannot be cured with chemotherapy alone. We knew the only treatment and possibility for a cure was a dangerous bone marrow/stem cell transplant. As part of her transplant process, Reese and her family relocated from Chicago to San Francisco. This is because the University of California San Francisco (UCSF) was selected as the hospital Reese would receive her transplant.
Reese's bone marrow transplant was on May of 2018. She fought through VOD, grade 4 GVHD, and TMA. She was on TPN (total parenteral nutrition) for months and developed diabetes & high blood pressure from the prolonged high dose steroids used to treat the GVHD. She remained inpatient for 8 months straight, fighting for her life, and prevailing over and over. Reese was finally discharged on December 20, 2018, five days before Christmas.
When Reese was released from the hospital, she spent three months at the Family House on UCSF campus. Her family had been living there since the previous May. This included her two sisters, dad, and Nonnie and Poppy. We were all overjoyed to be under the same roof again! Cancer had put a hold on life outside the hospital, but not even bone marrow transplant could slow down the spirit of these little preschoolers, and all they wanted for Christmas was to “live together” again, as a family. After discharge, Reese’s life was pretty routine with medical needs. She was still on incredible amounts of medication and she spent 3 days a week at clinic.
We all flew home together on March 21, 2019, almost a year after we left home for a cure. Reese flourished at home, she got a little stronger each day. Watching this progress was incredible, she is such a little fighter. When we returned to Chicago we transferred Reese’s care to the bone marrow transplant team at Lurie Children’s Hospital. We continued tapering off immunosuppressant medications and building up her new immune system. Reese’s leukemia continues to be in remission, thank God, and we know this from the bone marrow aspirations that she has had consistently since transplant.
Reese and her sisters have always been givers. The idea of giving back and helping those kids “who are still in the hospital” battling leukemia, or going through bone marrow transplant, is a big part of their life. We want to make a difference in the fight against childhood cancer by funding the research that finds better treatments. In August, with the help of her incredible community (TEAM REESE), Reese raised $20,007 to donate to a specific JMML study going on right now at UCSF. She did this by making lemons into lemonade. Literally. Reese and Quinn started kindergarten this past fall, what a dream come true. Now, it has been almost 2 years since transplant and 2 years that she has been in remission. As we close in on this mark, Reese is healthy and strong, and keeping up with her sister, Quinn. We know that we are blessed and we are grateful for every moment we have together.