Since we were just waiting, there was no reason to make a move. We were home for quite a while at the end of January and able to have visitors, which took our minds off some of our worries. Kari took Emily for routine blood work at a local lab on February 2 and drove over to get the results as soon as they were available. She immediately called me.
“I think it’s back. Her white blood cell count is nineteen thousand,” Kari said, her voice shaking. The normal range is between 4,500 and 10,500.
We called Dr. Powell, who said that when he reviewed the blood work, he hadn’t seen any blast cells. He only saw a lot of immature white cells, which could mean the bone marrow was making new blood cells. He recommended we get blood work again in two days. On February 4, Dr. Powell called while we were at Pappy Rob’s for dinner to tell us we needed to take Emily to Hershey in the morning. Her white blood cell count had shot up to 46,000 with 33 percent blasts. My chest tightened in fear as Dr. Powell told me this information. We knew what it meant. Emily had relapsed again.
That first night back at Hershey, I had an upset stomach, and I thought, There is no way I can get sick right now. I can’t let the Crohn’s flare up again. It would take me out of the fight, and I need to be there for Emily. I had to get out of Emily’s room, though. It felt like I was spreading my pain to Emily and Kari, and they were starting to worry about me.
I went to spend the night at the Ronald McDonald House, which is a fantastic resource for parents of sick children, offering free or low-cost lodging for parents who are staying near the hospital while their children get treated. In my room there, I was touching my Saint Christopher medal from my grandmother. When she gave it to me, she’d said that she was praying for me and that she knew this medal would guide me out of my disease, and it had been my talisman the whole time Emily was sick. When I touched it, I felt closer to my grandmother’s spirit of love and faith, and I could hear my whispers more clearly.
I knelt beside the bed to pray, thinking how this bone marrow transplant had to happen. I asked the good Lord to influence the donor to stop with the delays, to find it in his or her heart to put our Emily first. I wanted God to guide the actions of this stranger to save Emily, to save our family. And that night, the vision in the bone marrow transplant hallway happened again—the same thing—and I woke up and thought, Well, people say they get a sign. Here’s my sign. She’s going to get better at CHOP. We’re going to be teaching her to walk again. We’re going to be in the bone marrow transplant hallway.
Early the next morning, before I got to Hershey, Dr. Lucas and Dr. Freiberg were in a rush to present a new treatment plan to Kari. With this second relapse, there was no standard treatment protocol to follow. They had to use their best judgment to see if any combination of chemotherapies would get Emily back into remission so she could proceed to transplant.
“We need to get something started for Emily right away,” Dr. Lucas said. “Her white blood cell count is increasing rapidly. Her organs may start to fail.”
“We agreed that we’re going to give her a round of chemotherapy called ICE. It’s three different drugs: ifosfamide, carboplatin, and etoposide,” Dr. Lucas said. “It’s really intense chemo. She hasn’t had anything like it. There is a risk of developing neurotoxicity and kidney failure. I just want you to be prepared.”
Kari reached me in the dining room at the Ronald McDonald House.
“Tom, you have to get over here right now. The doctors want give her a combination of drugs, and it doesn’t feel right to me.”
I got a sick feeling in the pit of my stomach when I arrived at the hospital room and overheard the two doctors arguing over the treatment. If they couldn’t agree, why would we consider it?
“Tom and I need to talk about this alone,” Kari said.
“Okay,” said Dr. Lucas. “I’ll have the pharmacy begin preparing the chemo.”
“Not yet,” I said. “Kari and I want to talk about this.”
The doctors left the room and Kari turned to me. She’d already made up her mind.
“I am really uncomfortable with this plan. It just doesn’t feel right,” she said. “I think we need to go back to CHOP.”
“I agree,” I said.
As we were starting the process of getting Emily discharged, Dr. Freiberg came into the room to try to persuade us not to go.
“She’s not stable enough to transfer,” Dr. Freiberg said.
“Our instincts tell us we have to get another opinion,” I said.
“There are no more second opinions,” Dr. Freiberg said. “She needs to start chemo now, or you’re putting her life at risk.”
“If you feel she’s not stable, get a helicopter,” I said. “I don’t care if we have to pay for it. We’re taking her to CHOP for another opinion.”
“I can tell you what’s going to happen,” Dr. Freiberg said. “You’re going to take her to CHOP and they will treat her in an experimental trial.”
I didn’t want to hear this.
“When you get there, a young doctor is going to offer you a Phase 1 clinical trial that’s not going to do anything to help Emily. They’re going to use
