“That makes it even scarier,” Kari said. “It shows us how aggressive this cancer is.”
The next day at Hershey, Dr. Ungar ordered more blood work and tested the strength in Emily’s legs to make sure there wasn’t any sign of infection developing again. He pressed his palms on the soles of her feet and told her to resist his push, which she did with a lot of force. He grinned at her strength, and at us.
“I don’t know, Tom, Kari,” he said. “This feels like a false alarm. She’s strong, no bruising, no sign of infection. I’m not seeing blast cells in the blood work we just did here. We’ll look at her bone marrow just to be safe.”
Twenty minutes after the bone marrow aspiration, he came back.
“Her bone marrow,” he said. “It’s full of cancer.”
Emily had one of the worst types of relapse because she was still in treatment and receiving chemotherapy. This meant that the cancer had become resistant to standard therapies. The only treatment available, the one that had had the most success over time, was a bone marrow transplant. To qualify for one, Emily would have to get into remission again, which meant that she would need to go through several months of more intense chemotherapy. The doctors told us it would be more difficult to get her into remission this time, and the chemotherapy would make her sicker than before. When we asked about her chance of being cured with a bone marrow transplant, they told us that only 30 percent of children who have a transplant are alive five years later. I was having a hard time containing the sorrow that was rising in me, but I kept it down by focusing on holding Kari’s hand and praying.
The protocol for bone marrow transplant sounded grueling as the doctors described the “roadmap” for the next four months. They talked about the phases of Emily’s treatment, the “blocks” of chemo she would get, and how the way her body responded to each phase would determine what happened next. Over the next three months, she’d get three blocks of successively stronger chemo, then she’d have a month to recover before she got the transplant.
Emily would receive healthy blood cells from an anonymous donor. Before receiving the cells, she would need an additional ten days of high-dose chemotherapy and full-body radiation. This process is called conditioning and the purpose is to wipe out her bone marrow to make room for these healthy donor cells to grow. After Emily received the cells, Kari and I would be with Emily in her hospital room for four to six weeks waiting for the cells to settle into her bone marrow and start growing. Since her immune system would be wiped out, she would not be allowed to leave her room and visitors would be restricted because her body would not be able to fight off viruses or infections. If she survived that, our family would live for a month or two in an apartment in Hershey because we couldn’t be more than ten minutes from the hospital in case she developed complications. If all of this stayed on track, with no setbacks, we might be able to go back home sometime in May. Maybe that should be the new date in Kari’s calendar: that we could be home in time for Emily’s seventh birthday on May 2.
Kari and I tried to wrap our minds around how we would be with Emily during this long period where she would need our constant attention. On CaringBridge, Kari followed many families whose child had a bone marrow transplant. She knew of a few children who, despite horrendous odds and many setbacks, made it through and were cancer free after the transplant. There were many more devastating endings, though. We were praying that Emily would be part of that 30 percent but, from what Kari knew of the other families’ stories, the odds didn’t look good. The suffering we knew she would have to endure over the next few months was unbearable to think about.
Already the mood in the room was somber. Everything hung on finding the right donor for Emily. They started a search for a donor through an international bone marrow registry. We had nothing to do but wait to see if someone who matched with Emily was ready to donate. Kari posted on the blog that we needed people to pray for Emily, writing she just didn’t know how to believe anymore that Emily was going to be okay. I felt terrible about that. Hope was my job, and I was failing at it if Kari was discouraged.
Kari’s way of dealing with the situation was to learn as much as she could about relapsed leukemia. I saw her grab the laptop to research bone marrow transplants. When Emily first got sick, Kari always took careful notes when we spoke to the doctors and searched for information to see if she could advance her knowledge beyond what they told her, but she never doubted their judgment. With a 90 percent cure rate, there wasn’t much reason to question the doctors. With the relapse, Kari was determined to find the best route to a cure for Emily.
In the hospital, Emily was withdrawn much of the time, except when we tried to get her to FaceTime with Lucy, which was hilarious. Lucy didn’t quite understand what was going on. She started licking the phone, which made Emily giggle. It worried me that this time Emily wasn’t interested in her illness, not feisty or sassy. Like us, she’d thought she was close to being done with treatment. It was as if she didn’t understand why we were back at Hershey when we had kept telling her she was beating cancer. I didn’t know how to tell her what was ahead of her with the bone marrow transplant, even though she’d been there when we were talking
