We were busy living our daily lives, and Grace had just celebrated her 9th birthday. She was involved in dance and was a normal kid, but cancer came on so quickly and knocked us down.
Grace woke up one morning and had big bruises on her shins. The bruises kept getting darker, then she started getting petechiae. After some initial testing, our pediatrician called and told us that we needed to get to the hospital because Grace had leukemia. We drove from Lincoln to Omaha, and it was the longest drive. I can barely remember the details of that day. After more testing in the hospital, we learned it was acute myeloid leukemia (AML), very rare in children, and a very, very aggressive form of blood cancer.
On our first day in the hospital, so many different doctors came in and out of our room. Grace asked me, “Do I have cancer, am I going to die?” I answered her honestly and told her that doctors and nurses were going to help her the best they could. I went into the bathroom, turned on the bathtub, and sobbed. We had a long road ahead of us, and no one had the answers.
Most patients with AML have to spend six months in the hospital while they’re going through treatment because the treatment is so harsh – many adults don’t survive treatment. The risk of infection is so high, patients need to be constantly monitored. I quit my job, and my husband and I alternated staying with Grace in the hospital and taking care of our other children.
The type of chemotherapy given to AML patients is so toxic, particles that are excreted through waste can circulate through the air when you flush the toilet. When Grace would need to use the bathroom at night, we would all have to mask up to avoid breathing in the chemotherapy.
Instead of being in school, Grace was in a hospital room. Instead of playing on a playground with her peers, she would spend time with the nurses at the nurse’s station. She loved visiting with them, and they loved spending time with her – it helped her break up her day to leave her hospital room.
We had just celebrated Grace’s final chemo treatment when she came down with an infection and spiked a 105° temperature. She was started on IV antibiotics but became septic, and they brought a pastor in to pray with us. It’s very common for patients to get infections because their immune systems are knocked down to zero. Somehow, Grace made it to the other side of that infection, and we will be celebrating five years cancer-free in January. Her nickname is “Amazing Grace.”
Grace still has to be monitored for heart issues. AML treatment is very hard on your heart, and often the damage from treatment shows up in your organs years later. There is no guarantee that Grace won’t begin to experience more symptoms. Childhood is irreplaceable, and my child will never get hers back.
Grace
Acute myeloid leukemia (AML)
