Our names are Ashley and Amanda. Our mom was Deborah Stewart. We lost our mom very sudden on June 20, 2023. She was diagnosed with lymphoma and HLH disease.
Mom was a very funny, spunky, creative, sassy woman. She always lent a helping hand to anyone and everyone. She was never judgmental and always welcome to everyone.
Our mom was sent to the Avita ER in Mansfield, Ohio on June 3. That week leading up to that day, she seemed very lethargic and very tired. She laid in bed all week and didn’t take any of her daily meds. That was not like her at all. When she got to the ER, they ran some x-rays because she had really bad shoulder pain. When the films came back, it showed a spot on her lung. They took her for another set of x-rays of her chest. When those films came back, it showed that there were spots on her pancreas and liver.
Because she was so lethargic, her bloodwork came back that she needed a blood transfusion. The ER started that right away. The ER doctor suggested to ship her to another facility. We decided on OSU, James Wexner in Columbus Ohio.
Mom was finally settled in at OSU, her platelets were really low also. They started her on that as well. Throughout the following week, her platelets were so low that they couldn’t do any upper G.I. scope for the risk of bleeding out.
Every day she had platelets and blood transfusions. And every day her numbers were too low to do any biopsy. We finally get a chance for our mom to have a bone marrow biopsy done. Luckily, she didn’t have bone marrow cancer. A few days later, Mom is able to get a biopsy on her lymph nodes.
On Friday, June 16, we received the call that Mom has lymphoma with HLH. The blood team suggested that we start her on a high dose. Steroid IV. That Monday, June 19, the call that I have always dreaded to receive. The blood team told us that the steroid wasn’t working. She was starting to go into multiple organ failure. They informed my sister and I that she only had days left
Within the next 24 hours, Mom went downhill very fast. The morning of June 20, Mom was talking to us and by noon she was not breathing well and was getting medication to keep her comfortable.
At 2:04 PM, our mom was gone. I asked the doctor if the HLH is what took her and she said yes. We declined an autopsy. Another one of her doctors came in and asked if we had any questions. I asked, if this had come on all of a sudden. He said no, she probably had this for at least six months.
My sister and I have made the promise to be an advocate for our mom for HLH.
Thank you for taking the time to listen to our story.”
