To begin, they would harvest Emily’s T cells—a type of white blood cell that helps fight infection—in a process called apheresis. Then, in the lab, they would genetically modify them, reprogramming the cells to enable them to identify cancer cells and kill them. If it worked, it could eliminate her cancer. Dr. Grupp continued to emphasize the if.
“We have only treated three patients in the world with this,” he said. “Two of them went into remission and remain there. None of them had the same type of leukemia as your daughter. None of them are children; they were men in their sixties. We know very, very little. There is a very big chance it will not work.”
“Is it going to make her sick?” I asked. I didn’t want her to suffer. That was the main thing. I knew Kari felt the same way. We could not wish on her any more suffering unless it led to a cure.
“This is not toxic like chemo. We’re using her own immune cells to fight her disease,” he said. “There may be significant toxicities, which could be life threatening, but not the same as those posed by chemo. It’s likely that she’ll feel like she’s had the worst case of the flu in the world. There could be other things that we aren’t expecting. It is hard to know what to expect when so few people have ever received this treatment.”
“How long will treatment take?” I asked.
“We don’t know,” he said.
“If it does work, how long will it last?” Kari asked.
“We don’t know,” Dr. Grupp said.
“After it works, will Emily need a bone marrow transplant?” Kari asked.
“We don’t know,” Dr. Grupp replied. “There’s so much we don’t know because Emily will be the first child in the world treated this way. We want to increase knowledge, and we want to move the medical ball forward, and we want to help kids in the future. Those are the big-picture goals. But our immediate focus is to cure Emily, and we’ll work as hard as we can to do that.”
We signed the consent forms to begin treatment, a six-week process that would start the next day when a catheter would be surgically placed into a vein in Emily’s neck. The following day, the apheresis machine would be connected to the catheter to collect Emily’s blood. We watched through the window at the top of the machine as a centrifuge spun her blood around to separate out her T cells, returning the rest of the blood to her once the cells had been harvested. The centrifuge works like the spin cycle on a washing machine. We watched the technician adjust the speed of the spin to collect as many T cells as possible. For every liter of blood they collected from Emily they harvested a billion cells into a bag that hung on the side of the machine. They took that bag of cells to the lab immediately to begin the process of genetically modifying them so they would be able to attack cancer cells. In mid-April, the reprogrammed cells would be infused back into her, revved up for the fight. Emily would get the cells in three infusions: Day 1, 10 percent; Day 2, 30 percent; and Day 3, 60 percent. If all went well, the infusions would be done on an outpatient basis.
Emily wasn’t paying much attention to what we were about to do. At that moment, she was feeling well and resigned to whatever next thing people were going to do to her body. Her attitude had become practical. This had been her life for nearly two years, and she’d become used to it. She rarely complained unless she was in pain. The doctors treated her pain with a fentanyl patch, leaving her alert without the effects of the morphine, and brighter because she was not in pain.
We had six weeks to wait. We kept Emily busy during the long days in the hospital by reading books. More arrived every day, sometimes several at a time. When we were at Hershey waiting for the bone marrow transplant, Kari had created a plan to keep Emily entertained for those weeks we would be quarantined with her after they gave her the donor cells. Kari had invited people to send Emily books, and we were astonished by the response. We got books from all over the country, and even from other countries. We got new books and used books that had been cherished by children who had outgrown them, and the cards that came were filled with love and prayers. When Emily was out of sorts, or in pain, the easiest way to settle her down was to allow her to choose from the bottomless box of books. She could read as many as she liked, and there were always more. It was a blessing bigger than any of the people who sent them would ever know.
On an unseasonably warm March day, we convinced the staff to give us a day pass out of the hospital so Emily could get some sunlight and fresh air. Robin and Pam were there. We got the pass right after Emily finished giving Robin another art lesson. The nurses were all business when they told us we could go out for six hours and six hours only, cautioning us to be very careful to protect Emily from germs.
We took Emily to a park nearby, and Kari and I hovered near her as she moved around the play structure, frantic that she not slip and fall, break a bone. Kari covered Emily’s hands with sanitizer and wanted to reapply it every five minutes. I think she would have wiped down the whole play structure if she could have gotten over the embarrassment that would have produced. We were sticking so close by Emily
