20A-5-Caroline-W

Caroline W. 

Missouri
Birth Date: April 26, 2018

Diagnosis: Acute Myeloid
Leukemia
Caroline's Story

Just after turning five months old, Caroline became sick with what seemed like a stomach bug. Her symptoms were puzzling in that she sometimes seemed to feel better, but then would be right back to vomiting or being very fussy. We waited a couple of days for her to get better, but she just seemed to be so tired all the time. Her tummy was getting bloated, and we took her to the doctor on a Friday. We were told to give her more time to get over whatever virus she might be fighting. Over the weekend she did not improve and we were anxious to get her back to the doctor on Monday. They did blood work and called me saying that it just looked all wrong. They wanted to repeat the blood work the next day. We returned for more blood work and within half an hour we were told that the blood work didn't look good and we needed to get to Children's hospital right away. When we arrived at the hospital they did blood work again. At this point, Caroline was still sick, exhausted, and had been poked with needles over and over as they tried to find her vein. We were admitted to the hospital and she had a bone marrow aspirate to confirm our fear. Caroline was diagnosed in October of 2018 with Acute Myeloid Leukemia. 

Treatment was started right away. Caroline had five rounds of very intense chemotherapy that required her to be in the hospital for treatment. There were very hard days of pain, nausea, frequent blood transfusions, and fighting infections, but through it all she remained our sweet Caroline. This treatment put Caroline into remission, and we were able to go home just before her first birthday! It was quite a celebration. We enjoyed a full year at home together making memories and celebrating milestones. Caroline had spent her first Thanksgiving, Christmas, New Year, and Valentine's Day in the hospital, and when we were were finally done with treatment we cherished spending her first Easter at home as a family! We continued to have follow up care and check her blood work frequently to monitor for any signs of relapse. 

Unfortunately, in May of 2020 we received the difficult news that Caroline had relapsed and would be fighting leukemia for a second time. This was quite a shock because we had just started to feel like maybe the pain of childhood cancer might become a memory. Now we had to start fighting again. We knew it would be necessary for Caroline to have a bone marrow transplant. Caroline was admitted to the hospital again and began even more intense and difficult chemotherapy for relapsed AML. She did two very difficult rounds of chemotherapy. The first round resulted in a terrible red and hot rash all over her body. She got an infection and fought through it. The second round of chemotherapy was the most painful up to that point. She got terrible mouth sores and inflammation in her digestive tract. She had bone pain, and had to fight another infection. That was the scariest time for us, and was the most sick we had ever seen her. After those two rounds, we still had to face the most intense chemotherapy we had ever had in order to prepare her body for her bone marrow transplant.

 Caroline received her bone marrow transplant on Aug. 21st. She is currently in the recovery stage and still in the hospital. She is being monitored extremely closely to make sure we catch any possible complications as soon as we can. We are waiting for her new donor cells to engraft and start remaking healthy blood cells. We know that there is still a very long journey ahead, and we will have many more battles to fight as Caroline continues to recover. There are so many side effects and risks involved, but we cherish each smile our sweet Caroline gives us. She is a brave and sweet little girl.









"I have a couple of pictures for you. I had to wait for Caroline to fall asleep because there are just very few smiles when she is awake. This quilt is so beautiful, and it actually makes me feel like she looks like she is in a regular bed instead of a hospital bed."