May 12, 2014 | by Dominique Grignetti
City of Hope patient Kathleen "Kat" Muller, now 23, has been through two bone marrow transplants to combat aplastic anemia and is now on the road to recovery. She credits the support of her friends and family, the care of her doctors, and a little inspiration from YouTube phenom and "The Voice" contestant Christina Grimmie. Muller shares her story here ...
By Kathleen Muller
In April of 2012, I went to the ER for a headache that had been bothering me since February and was immediately admitted to the hospital for not having enough blood or platelets. Two days later, after my first bone marrow biopsy, I was diagnosed with aplastic anemia. The first thing the doctor told us was: "You have to go to a higher-level hospital."
I was originally supposed to go to a hospital other than City of Hope, but when the staff at that hospital discovered I was 30 days from my 21st birthday, they realized they couldn’t treat me. The doctor who was in charge of me had a friend at City of Hope and gave him a call.
This was around the time that I discovered Christina Grimmie on YouTube and was touched by her song “Advice.” In the song’s music video, the older brother spray paints “stay strong” on a sheet. I felt like that message was meant for me, so I bought the song on iTunes and I played it every time I was feeling down.
On April 27, 2012, I was transferred to the pediatric unit at City of Hope Helford Clinical Research Hospital. My mom and one of my best friends from fourth grade drove behind the ambulance on the way there.
They stayed with me and I settled in. On the bright side, my room was big, the TV had movies on demand and the menu had bacon on it. But that first night was a long night. I read a good portion of “The Hunger Games: Catching Fire.”
This time was not easy, but whenever I had a problem – crying, nausea, pain – someone would come and help. There was care given to me at City of Hope that I never would have gotten elsewhere. All the staff are incredible in what they do. Every time I tell someone how special City of Hope is, I begin to cry.
My first transplant was a complete success. My younger sister, Alexa, was my donor. And May 21, 2012, became my second birthday. The hardest thing was watching my hair fall out and missing out on a trip to Las Vegas for my 21st birthday. But I was home before 100 days post-transplant, and I immediately went back to school.
A "cool adventure" for 22nd birthday
For my 22nd birthday, I was at the Bone Marrow Transplant Reunion at City of Hope. It was a pretty cool adventure. I have never experienced something like that before. And then the first weekend of June, I got my Vegas trip. My mom, Aunt Darlynn, Aunt Debbie, Aunt Lenore and I all went. I was happy to be out and about.
Then, when things were getting back to normal, everything crumbled again. We found petechia on my lower legs. That's the first sign of low platelets. This is something not normally seen by doctors. I was still completely grafted to the transplant but I wasn't making platelets. I went from June to November getting transfusions weekly.
This time I would need an unrelated donor transplant to survive. They found my donor, a 28-year-old male. So on Thanksgiving, I was admitted and I brought my best friend, Anessa, with me.
This is where my journey intensified. The transplant procedure took place on December 3, 2013, and lasted over 12 hours. At some point after chemo, I completely shaved my hair off. I had a lot of side effects: being sick, weakness, nausea.
After many ups and downs and inpatient visits, I was discharged from the hospital in January of 2014. Shortly thereafter, when I was recuperating in The Village on City of Hope’s campus, Christina Grimmie came to City of Hope and I got to meet her before she performed. I told her how I'd been following her since I came across her song "Advice" and how it had helped me all this time. I started crying while telling her the story.
My mom and grandma arrived just in time that day to see Christina change her song line-up, dropping one song and adding "Advice" and then dedicating it to me and all of the other pediatric patients at City of Hope. She wrote uplifting messages to Anessa and me. I'm so glad I was able to meet Christina that day. She is an inspiration.
Good days and bad days, plus one incredible experience
I am now at home as I continue to recuperate. I have good days and bad days. I’m trying really hard to improve. My body still feels fragile, and emotionally it is still difficult. I can’t wait for the day when I can ride bicycles with my friends and become independent again.
I am so grateful I was able to see Christina perform in person on "The Voice" last week. To see her rocking the stage is incredible. She is the type of person who connects with other people and uses her music for a higher power. Going to the show and being backstage was an amazing experience for me and Anessa to do together after everything we’ve been through. It completely lifted our spirits.
I feel like I have come full circle. This year’s Bone Marrow Transplant Reunion was a huge birthday celebration for me, reminding me that I am alive to celebrate.
Learn more about hematopoietic cell transplantation, or bone marrow transplants, at City of Hope.