Emma will receive Chemo for two more years
Emma is the youngest of our four children. She was a happy, healthy and energetic three year old who bounced around the house and yard with her older siblings: Sarah (15), Madeline (10), William (5). She smiled and laughed with seemingly not a care in the world. Emma was so polite and loving that when we changed her diaper, she would say, “Thank you!” We could not figure out why she was so reluctant to potty train, but we figured this would come soon enough. Last June, she suddenly spiked fevers and had a cough. Her skin was very pale, and she woke up at night crying. We took her to the pediatrician’s office on a Monday where the doctor dismissed it as just “a virus.” She advised us to use a humidifier at night to help ease her cough. We were supposed to travel to Florida that Saturday for a vacation. Emma fell asleep during the days that week, which was very unusual for her. That Friday, we thought we would take her to the neighborhood basketball court, in the hopes that the fresh air and play time with her siblings would help her feel better. Emma cried and said that she wanted us to hold her. I wondered if her legs hurt or she was just extremely tired. I just knew something was wrong, so her dad took her to a walk-in-clinic as I stayed with the other kids. The nurse practitioner there immediately knew our sweet, active child was in real trouble. Her pallor was alarming, and her gums were white. He did a blood test that revealed dangerously low hemoglobin levels (2.8). Emma went to the local ER, where more grueling tests continued. She was rushed to MUSC. The family drove down there, where we awaited answers. The next morning, we received the devastating diagnosis of leukemia. We realized that potty training was hard for her because her bones had been aching. She just never told us.
Emma began chemotherapy treatment on Monday and remained at MUSC for two weeks. Throughout the summer and fall, she continued different chemo treatments, some much more intense than others. She turned four in July, and the next day, a stomach tube was placed. Emma was hospitalized three different times for stomach tube complications, including an infection and the tube becoming dislodged. She will start the delayed intensification phase in November, and will continue for two months. This is the most difficult part of her treatment program. She will lose her hair, take steroids that will cause severe mood swings, have nausea, vomiting, and feel sick to her stomach. We have to be so careful with germs and the prevention of infections to avoid more hospitalizations.
Emma’s illness has put a heavy strain on our family, and the road ahead is long. She will receive chemo for about two more years. We are so thankful for the excellent care she has received at MUSC and grateful to God that she is here with us, despite everything else. No, the hospital is not fun; and yes, she dreads it… but it’s the only way she’ll get better. Missing the family vacation was disappointing for the kids, but they did not complain. They seem to understand that their sister’s health is our priority right now, and their concern for her makes us so proud. It is tough arranging childcare on days when traveling to MUSC, which is two hours away from our home. Madeline had to quit playing soccer because of scheduling issues and the fact that Emma can’t go to the soccer games at the park with all the other kids. My HR director at my job has threatened my position if I need to take off for her care by saying, “I don’t know if we accommodate you at this school.” (I am a teacher). Since delayed intensification will last through the winter, Emma can’t visit Santa Clause at the mall, go to church on Christmas, or go shopping to pick out toys. The financial costs are also hard on us (parking costs, medically related expenses, meals at the hospital, etc.). Her siblings have been amazingly selfless throughout all of this. They just want their sister to get better and to stay well. We look forward to Emma resuming her favorite hobbies: playing with her siblings and toys, and going to the beach. We hope she will play sports when she grows older and stronger. It’s like her whole childhood has been disrupted.
We appreciate whatever you can do to help make Christmas special for Emma this year. She is an adorable child-the apple of our eye! Your generosity is truly appreciated! We hope your holiday season and Christmas is very merry. May God bless you and your family.
Mark and Jennifer Grant