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.
Reese 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 juvenile myelomonocytic leukemia (JMML), a very rare form of childhood leukemia. It is similar to, but different than, acute myeloid leukemia.
To come to this leukemia diagnosis, experts across the country — from Chicago to San Francisco, 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 bone marrow/stem cell transplant. As part of her transplant process, Reese and my 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 and she had just turned 4-years-old. 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. Our family had joined us and been living there since the previous May. We all flew home together on March 21, 2019, almost a year after we left home for a cure. When we returned to Chicago we transferred Reese’s care to the bone marrow transplant team at Lurie Children’s Hospital.
Reese has been in remission for eight years. Today, she is a 12-year-old with incredible determination. She started riding horses for therapy at Equestrian Connection, then worked hard to earn a spot on a travel basketball team. She takes classes through CTD at Northwestern and has spent many days on stage performing in theater.
But what makes Reese remarkable goes far beyond the things she does. She is wise beyond her years, loves helping the people around her problem-solve, and is consistently praised by her teachers for her empathy and strong sense of self. She may be small, but she is mighty—brave, fierce, determined and deeply kind. Cancer is part of Reese’s story, but it is only one chapter in an incredible life.
We want to make a difference in the fight against childhood cancer by funding the research that finds better treatments. The year we returned from UCSF, with the help of her incredible community, Reese raised $20,007 to donate to a specific JMML study at UCSF. She did this by making lemons into lemonade. Literally. We will walk for a cure again this year and we know that we are blessed and we are grateful for every moment we have together.
Reese
juvenile myelomonocytic leukemia (JMML)
