My family has very strong opinions about everything and, while they meant the best for us, sometimes when they were expressing a strong sentiment about what we should do, the conversation would start to sound like an argument. What Kari and I needed was to hear our own hearts speaking out loud about what might be the next best step for Emily. With Ariana and Becky, because they were young and didn’t feel they could advise us, we had people who would let us just vent or allow us to express our confusion without pressuring us to make decisions before we were ready. At this point we were so frightened and confused that we honestly didn’t know what to do.
Our worry now was how to decide between Hershey and CHOP—comfort versus the chance for something new. Was it better for Emily to be close to home and be able to see people who loved her nearly every day? Did that support mean more than access to cutting-edge treatments?
The son of one of the families we had met at Hershey had recently passed away from leukemia. They had transferred to CHOP when things started to go downhill for the boy. They told us later that the one regret they had was that they had not transferred to CHOP sooner because they felt if they had, he might still be alive. There is no way of knowing that, of course, and we loved the doctors and the care that we got at Hershey. Yet that opinion hung in my mind while we considered whether we needed a third or even a fourth opinion.
In keeping Emily comfortable and surrounded by family, was she missing out on some new medical advance that could save her life? Kari was the most torn up about this. I kept thinking CHOP was someplace up ahead in Emily’s future, though that vision I’d had with Emily and me in the bone marrow transplant hallway had not come back. Focus on the here and now until the whispers get louder and I understand them more, I thought.
Hershey discharged Emily and we went back home at the end of her first block of chemo. I went back to work, and Kari stayed home with Emily. The only thing Kari wanted to do was to sit on the couch with Emily and watch cartoons, to keep the house tidy, and cook our own food. Kari, eagle-eyed for germs, found super-strong antiseptic wipes that were so powerful they had a toxic warning symbol on the container. Kari had to wear gloves when she used them to wipe down the grocery store cart. That’s how vigilant we thought we had to be as we waited for the latest blood work results that would show how Emily had responded to that first block of chemo.
We did not receive the news we wanted. We just heard from Hershey. We knew something was wrong since it has taken them 24 hours to get back to us. Usually they can tell within an hour of the bone marrow aspiration if there is remission. There are still a lot of immature cells in Emily’s marrow. They can’t tell with the microscope if they are actual blast cells. They are sending it away for more testing. It’s possible they are just immature good cells, but it sounds like they feel she still has 4–5% blast cells. With that many blast cells the bone marrow transplant is unlikely to work.
—Kari’s Journal
November 9, 2011
After the news that the first block of chemotherapy was not as effective as we had needed it to be for her to qualify for a bone marrow transplant, Emily seemed exhausted. Some days she only wanted to lie on the sofa watching TV with Lucy. We could see that cancer was sucking the life out of her and out of us. The psychologist at Hershey told us that kids never give up. But Kari knew from reading stories of other cancer families that children know when their time has come. They start talking about dying. We feared Emily might give up, and we didn’t know what we would do then. Right around that time, Emily asked, “What will I do if my cancer keeps coming back?”
“We will keep fighting it,” Kari said.
Just when we thought there was no good news to be had, we found out on November 11 that Emily actually was in remission! The cells they saw were just immature good cells and not cancer cells, as they had originally thought. Emily had fewer than 1 percent cancer cells in her blood, which made her eligible for a bone marrow transplant if the cancer cells stayed at that percentage. We were so happy with this news, which we got the day before Emily was scheduled to begin the second block of chemo, a tough one that would require her to be admitted to the hospital for more than a week. It looked like we were going to spend Thanksgiving in the hospital, so before we left for Hershey, I watched Kari take down all the Halloween decorations and put up the Christmas stuff, skipping over Thanksgiving.
“We’re focusing on Christmas,” Kari said. “We’ll be home for Christmas.”
Chapter 11
HOW CAN WE SAVE EMILY?
Hershey keeps all the T cells… CHOP keeps a few T cells. What does this mean for Emily and the outcome of the transplant? No one can tell us. All we know is that the bone marrow from the donor is processed differently and there isn’t any answer as to which way is better. We are trying to
