Reese’s Journey through Bone Marrow Transplant
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 can not 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 our 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 flew from Chicago to San Francisco on April 15, 2018, and entered inpatient care at UCSF on April 23, 2018. This decision was made because UCSF is the home of three very important doctors in the very small JMML world… Mignon Loh, Chris Dvorak, and Elliot Stieglitz.
Reese’s bone marrow transplant was May 2, 2018. We anticipated that her release from the hospital would be early June. Reese suffered from multiple complications from the transplant, including grade 4 GVHD of the gut (graft vs host disease), VOD (Veno-Occlusive Disease), TMA (Thrombotic Microangiopathy), and other secondary problems from those big complications. She was on TPN (total parenteral nutrition) for months and developed diabetes & high blood pressure from prolonged high dose steroid use. All of these complications are detailed in the blog. She remained inpatient for 8 months straight, fighting for her life, and prevailing over and over. Reese was finally discharged on December 20, 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 very routine with medical needs. She was still on incredible amounts of medication and she spent 3 days a week at clinic. Then 3 days became 2 days a couple months later, then 1 day a week… all the while she was building up her immune system so it was safe enough for her to travel home to Chicago. Reese’s leukemia was in remission, but her body was not yet strong. She had relearned to walk and eat, but it was slow going and still a battle.
Reese’s entire family stayed for the whole ordeal, because we know that together, we are stronger. In Poppy’s words, “I leave when Reese leaves.” 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. There is no greater blessing than your child entering remission and staying there. When Reese returned home in March, she wasn’t strong enough to return to preschool with Quinn, yet. Reese was very much still gaining strength and endurance. But as we successfully peeled off immunosuppression, she was able to join her sister for the last month of PreK in May. She hadn’t been a student since her cancer diagnosis in early December of ’17, this was an incredible accomplishment! Reese loves school and she left with pride each morning, her tiny little body working so hard to join her peers and be strong enough to learn.
Over the summer, Reese worked hard and became a little bit stronger everyday. Swimming at the pool was incredible for strength building, and she could do this because her double lumen broviac was removed at the beginning of the summer. She had a broviac placed shortly after she was diagnosed with JMML, when she began chemotherapy in Chicago back in February of 2018. She kept it throughout bone marrow transplant because of the double lumen access. This was necessary for the large number of medications administered daily. In June, she had it replace with a port. A port is access that is more safely inserted under the skin, allowing Reese more freedom to be a 5-year-old. At the beginning of the summer, Reese patiently watched her sisters do activities that she wasn’t strong enough for, yet. By the end of the summer, this little girl was participating in ballet, gymnastics, and tennis!
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. You can read about Reese’s lemonade stands here, at:
My sweet girls started kindergarten (1/2 day) this fall, what a dream come true. We know that we are blessed and we are grateful for every moment we have together.
Thank you for your continued support of our family. We will continue to keep you updated on Reese’s journey.
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Link to Gift Pages:
Having one of the tiniest members of the family, neighborhood, community, or church in the hospital is heartbreaking. You want to send the child a gift that is meaningful, something impactful. Something that will MAKE A DIFFERENCE. When you are small, spending one hour in the hospital is too long. Through our extensive inpatient experience, I have compiled these lists of GIFTS. I hope they will be helpful to someone else who is on this journey.