While he was making his way through hospital security with the tiny duffel bag that contained Lucy, she started bumping up against the sides of the bag.
“What do you have in there?” one of the guards asked Big Jim.
He grinned, always eager to show off his favorite dog. Big Jim opened the zipper just a little bit, and out popped Lucy’s little head. Big Jim grinned. The guards grinned.
“It’s my granddaughter’s dog,” Big Jim said. “She hasn’t seen her in weeks, and we all know how much Lucy comforts her.”
“I never saw her,” said one guard, grinning.
“What dog?” said the other.
The guards directed him to the oncology floor. The whole staff seemed to be in on the “secret” visit. They told Emily there was going to be a big birthday party in the teen lounge on the oncology floor and she was invited. There was no party planned, though. The nurses were so delighted by the idea that a few of them were in the room when Emily opened the door. At first, she was confused, seeing that there were no decorations or cake, or any other guests, but then she saw Big Jim.
When he opened the duffel bag, it was like the first moment Lucy and Emily met. They were nose to nose, exchanging love in that secret language they had. After a few hugs and some tears (from Emily and from Big Jim, Nanny, and Uncle Jim), Lucy immediately took her place on Emily’s knees, trying to soothe the pain that she sensed still came from there. Emily had been complaining of stomach pain right before Lucy arrived, but as soon as she saw Lucy, she was smiling and feeling great again. We wished Lucy could be here all the time to smile and cuddle with Emily.
On February 21 we received good news. The test showed the bone marrow was “empty,” meaning there were no bad cells there. The chemo was working, but it also killed all her white blood cells, which were at zero. We would have to reassess after her marrow had time to start producing new cells and see if they were healthy cells or blasts.
Then by February 24, we received the discouraging news that the blood work showed 6 percent cancer cells. A more precise test called the MRD (minimal residual disease) test showed Emily had 13 percent blasts in her bone marrow. The doctors were worried that the chemo was not working well enough or even working at all. If the blast cell count was the same or higher at the next bone marrow biopsy in a few days, they would have to try a stronger chemo because the cells were becoming resistant to what they had been using.
We missed THON weekend that February because Emily was too sick to leave the hospital. Some of our THON friends stopped by to visit, which was great for all of us, but it was also sad. The doctors postponed the date for the bone marrow transplant to March 20, hoping the leukemia cells would be less than 1 percent by then. I was full of worry and so was Kari. Could we keep Emily alive for another month when every test showed more cancer in her blood?
There isn’t much we can do except wait until the next bone marrow test in two weeks.
Prayers:
1. That the cancer cells go away—completely. Typically, most transplant centers will not attempt to do the transplant if there are more than 5% cancer cells left because they know the transplant won’t work. That’s how important it is that we get this number down.
2. That Emily is not in pain. She’s been having more pain the past few days and developing some sores that are painful.
3. That Emily does not develop any infection. She hasn’t run a fever the past few days so it seems the antibiotic she’s on is working.
—Kari’s journal
February 24, 2012
Even though we had recommitted to Hershey, Kari was still turning the decision over in her mind, and so was I. Before Emily relapsed, Kari had looked at Emily’s chart, where she saw a doctor had noted a chromosomal abnormality. When she researched what she had found, she discovered that the abnormality made it more likely that Emily would be resistant to standard chemotherapy treatments. There wasn’t enough research to support changing Emily’s treatment, but we had questions as to why we hadn’t been told. Kari was reviewing every detail of Emily’s treatment, reconsidering every decision we’d made, and reevaluating the advice we followed, and she was starting to feel maybe we should have stayed at CHOP.
“Let’s talk with Nurse Karli,” Kari said. “She’ll have good advice as to what we should do.”
We paged Nurse Karli, and when we told her the lab numbers, and about Emily’s chromosomal abnormality, she lowered her head as if in prayer before she spoke.
“There’s nothing more they can do for you here,” she said. “If I were you, I’d take her to CHOP today. It might be her only chance.”
I walked out of the room into the hallway because I didn’t want Emily to see me upset. I steadied myself against the wall and conjured up that vision of her and me in the bone marrow transplant hallway at CHOP. It was not a whisper—I didn’t hear it—but I summoned it to support me. I saw it vividly in my mind. That was where we were going, I decided.
I felt a hand on my shoulder that interrupted my vision. It was Dr. John Neely.
“Can you and Kari join me in the consultation room?” he asked gently. “The blasts are increasing. We need to make a plan for what’s next.”
At the table, Dr. Neely was blunt.
“It’s time to set up hospice care for Emily,” he said. “We don’t have any more tools to treat her cancer. We’ll treat her with chemo one more time to
