—Kari’s Journal
November 16, 2011
Kari’s instincts were right about Thanksgiving. We were out of the hospital for a few days after that first dose of Block 2 chemo, but then Emily got chills and spiked a fever during a clinic visit, so they admitted her, thinking she might have an infection. They didn’t want to take any chances. We got a three-hour pass to leave the hospital to have Thanksgiving dinner with Aunt Laurie and the cousins, and we were glad for the break, but it was clear Emily wouldn’t be discharged anytime soon. Her ANC (absolute neutrophil count), which measures the number of infection-fighting white blood cells she has, was 50, essentially zero; a healthy count ranges from 1,500 to 8,000. The harsh chemo also made her nauseous and gave her mouth sores, making it difficult for her to eat. Her oxygen levels kept dipping below 90 percent when she slept, so they kept her on oxygen at night.
Kari and I were worried, but Emily was sassy and feisty around that time. If anyone irritated her, she would write their name on a dry-erase board, give them detention, and order them out of the room. When Pappy Rob came to visit, he said or did something that rubbed her the wrong way. He was not allowed to talk to her at all, only permitted to follow her orders. “Get me a drink!” she instructed him. “Take me to the playroom!”
Of course we were talking a lot about the bone marrow transplant, but Emily never said much about it. She must have heard us discuss the fact that if she received marrow from a male donor, a blood test would show that she was a male. One day, out of the blue, she had a question.
“So, if I get cells from a boy does that mean I am going to turn into a boy?” she asked.
“No!” I said, chuckling.
“But then I could pee standing up!” she said. She has an amazing ability to turn things around.
We were disappointed when her ANC was still only 50 after Thanksgiving, but a few days later her ANC was 6,600, high enough that they let her go home. We wanted to cram in as many Christmas activities as we could because we never knew if Emily would end up spending the holiday in the hospital. We went to the Philipsburg Christmas parade, and the THON students paid us a visit. Becky brought four other THON friends with her, and they played Emily’s favorite game: animals. She assigned each one of them an animal. The students then had to act like that animal, making animal noises, crawling all over the house, jumping from the ottoman to the couch, begging for food. It was very funny to see college kids pretending to be cats and dogs, wagging their tails and licking their paws. Then suddenly Emily got pain in her right side, started vomiting, and we had to go to the ER at around 11:00 p.m. on a Saturday night.
From October through January, we lived in the hospital most of the time. We were able to come home only for a few days before Emily spiked a fever, or needed a blood or platelet transfusion, or she had to be readmitted for chemotherapy. We were anxious as we watched her lab values fluctuate.
For us, 2012 will start off either good or bad, depending on how you look at it. On one hand Emily will get a bone marrow transplant that we hope will save her life. But on the other hand… well, Emily is getting a bone marrow transplant. We hope this turns into a wonderful year for us. 2010 brought cancer. 2011 brought more cancer. How about 2012 brings a cure?
—Kari’s journal
December 31, 2011
The good news was that there were many potential bone marrow donors for Emily. There were several who were a ten-out-of-ten match for specific proteins on her cells, meaning that the donor’s cells should settle in Emily’s bone marrow with fewer complications. We were overjoyed to learn this, and grateful to the donor they chose, whom we hoped to meet one day. The donor remains anonymous until a year after the transplant, and they put you in touch only if both the patient and the donor agree.
Once we had a match, the focus was keeping Emily in remission until the transplant, which was scheduled for early February. That first week in February, if all went according to plan, the donor would come in to a hospital to have stem cells harvested in a procedure similar to donating blood. The technicians at that hospital would package up those cells and ship them to Hershey, where Emily would receive them through an infusion. The cells would then migrate to her bone marrow, where they would settle in to begin growing healthy blood cells.
That date for the bone marrow transplant kept moving because the donor needed to delay. The transplant was initially scheduled for February 7, but on January 6 the doctors told us there would be a two-week delay, which meant it wouldn’t happen until February 21. We never knew the reason for these delays, and I was having a hard time containing my frustration because this was delaying Emily’s recovery. Did this person sign up to donate bone marrow to save a stranger’s life because it sounded like a noble thing to do and then get cold feet when the day came to make the donation? I did not know. I wanted to continue to be grateful to this person because he or she might be the person who saved Emily’s life. Yet they must not have understood how fragile this moment was, how we needed to
