With the stress all of us were under, this was a part of the appointment we appreciated. While the child life specialists played games and did crafts with the children, the parents chatted, updating each other on their child’s condition, and sharing our worries with the only people in the world who truly understood how we felt. In the waiting room our hearts were open to each other. When a new family arrived, the group embraced them. If we saw a parent sitting alone, one of the parents would sit next to that mom, maybe place an arm around her shoulder, waiting to see if she wanted to talk. The children knew to welcome other children, too. The first day Emily arrived, a girl named Bella, who also had leukemia, explained to her how much getting her port accessed was going to hurt, but that she would get used to it. Weeks later, Emily was the one who was giving this same advice to the newcomers.
When Emily’s name was called, our anxiety about what was going to happen with her Mediport began. After each time the nurses accessed the port, they protected it with a thin, sticky plastic film called Tegaderm that adhered strongly to the skin. Ripping the Tegaderm off was agony for Emily. When we got to the examination room, Emily sat in my lap so I could hold her arms as the nurse ripped away the bandage. Then the nurse would swab the area with alcohol and access the port. Each time Emily screamed in pain, but she was also afraid. She knew this was just the beginning of being poked and prodded.
Next came the blood draw. Sometimes the nurses collected five or six tubes of blood. Usually she had a lumbar puncture followed by chemotherapy injected into her spinal fluid to make sure cancer cells didn’t grow there. This was followed by a bone marrow aspiration to check for cancer cells in her bone marrow and make sure she was still in remission. After a visit with Dr. Ungar, Emily would receive IV chemotherapy that she knew would make her sick later that day and maybe the next.
We’d take our place at the chemo infusion center, each family separated from the others by curtains. The nurse connected bags of chemotherapy and fluids from Emily’s port to the IV pump. Sometimes the IV infusions took thirty minutes, but sometimes they took up to eight hours.
As we watched the medicine drip slowly into Emily, sometimes we heard children crying or throwing up at the other chemo stations. Often when we heard the soft sobs of the other overwhelmed parents, I’d leave Emily’s side and go to comfort them and often we got the same in return. This reassurance usually came without words. A simple hug and a kind gaze were all that was needed to show other parents that we knew what they were going through and that we were in this together.
During the chemo infusion, we anxiously awaited the blood work results. If her red blood cells or platelets were low, then she would have to stay at clinic longer to get a blood or platelet transfusion. If Emily’s white blood cell count was low, it meant her immune system was weak, and she would have to miss school for a few days to avoid germs. So much hung on these visits, yet nurses and child life specialists managed to keep the atmosphere light. There was always laughter and jokes.
After the procedures and infusions were done, we often drove to Friendly’s across the street from the medical center for a quick bite to eat or an ice cream treat before heading home. We knew that at some point during the drive Emily would have to use the restroom, so we usually stopped at the Harley-Davidson dealership about an hour and a half from the hospital. I often ended up buying something, a T-shirt or a little motorcycle toy; because we were such regular customers of their facilities, I thought we should pay them back a little. We might have to deal with Emily being sick on the drive home, which was miserable for her, because the last place you want to be when you are nauseous is riding in a car for a long period. Sometimes she would be fine, and we would roll the windows down and sing. It just depended on the type of chemo she’d gotten and how her body responded. We came home exhausted, knowing we had to do it all again the next week.
In October, when we took Emily to Hershey for her weekly chemo treatment, the doctor became concerned about her legs again. Her right calf was swollen and red. They decided to admit her so that they could give her IV antibiotics and keep an eye on the redness and swelling.
Emily perked up when she heard that she was being admitted because she was excited to return to the playroom, and she was already boasting about how she was going to beat me at air hockey because she wasn’t in a wheelchair anymore. When Kari mentioned she was disappointed that Emily would miss Halloween, the nurse told her she wouldn’t miss it at all. The hospital had plenty of costumes for her to choose from, and all the young patients were going trick-or-treating around the hospital the next day.
That next morning when Emily sat up to eat, she noticed that she’d left a bunch of hair behind on the pillow. I could see the alarmed look on Kari’s face, but before Emily could
