Emily said she wanted us to leave her alone to play pirates with her new friends. She endured more warnings and admonitions from me and Kari that she be careful, and one more application of hand sanitizer before we stepped away. Just as we turned to sit on the bench with Robin and Pam, we heard Emily yell out to the other kids, “Follow me!” And then we heard that sound, like the ping of a baseball hitting an aluminum bat, and turned around to see Emily flat on her back. She hadn’t seen the monkey bars in the glare of the harsh winter sun and had run full force into them. She had a purple lump on her forehead about the size of half a golf ball, and it was growing. Things started to move in slow motion.
I gathered her up and sprinted to the car with Kari, Robin, and Pam jogging behind. Kari was yelling frantically, “Tom, you have to run faster!” I laid Emily out on the passenger seat while everyone else piled in the back. We were all frantic, each of us convinced that we were the one who could have, should have, stopped her.
We didn’t know Philadelphia very well. Kari was shouting out directions back to the hospital from the GPS.
I remembered the way back, but it didn’t align with the GPS directions. I went to turn when Kari emphatically yelled, “You are going the wrong way!” I believed that I was entering the correct on-ramp so I took it anyway. The GPS updated, and then everyone calmed down because we knew we were on the fastest route back. Kari was terrified Emily’s blood wouldn’t clot and we’d lose her from bleeding on the brain, not leukemia. I wasn’t thinking about bleeding. I was thinking about permanent brain damage. Fortunately, Emily sustained no damage, except for a big knot on her forehead. That black and blue knot made me wince every time I focused on it, but it did not faze Emily.
The days dragged on in the hospital as we waited for the T cells to be ready. In the meantime, Emily received what we hoped to be her very last round of chemotherapy to keep the leukemia from growing out of control. It was an intense five-day combination of chemotherapy drugs—Cytoxan, etoposide, and clofarabine—which made her very ill. We were used to her being nauseous from the chemo, but this time the nausea and vomiting was much worse. After a few weeks she had lost so much weight she needed a nasogastric (NG) tube, a long, thin flexible tube that delivered nutrients directly into the stomach. Her skin looked gray and was very sensitive. Her skin ripped every time the nurses changed the dressing on her port. She received daily blood and platelet transfusions.
It was a lonely time for me and Kari. Emily was confined to her room for the most part, so she wasn’t exposed to germs, and the confinement made us cranky. We did have a few family members visit, but we were always worried they would bring a cold or other illness into the room.
Prayers needed:
1) That Emily no longer suffers from nausea/vomiting
2) That this chemo regimen puts her in a solid remission so she doesn’t have to go through any other treatments before transplant
3) That she doesn’t get any infections while her counts are low
4) That she remains brave and strong
—Kari’s journal
March 11, 2012
While we waited for the T cells to be ready, Kari continued to learn as much as she could about T cell therapy. There wasn’t much online about the treatment, but there was some information about Dr. Carl June, the brilliant researcher at Penn Medicine, who had devised this inventive method for using HIV as a vehicle to treat cancer. At CHOP we were surrounded by scientists at the forefront of this incredible idea, so, as we got to know more about the treatment, we got to know more about the people involved in the research.
We learned that the navy had put Dr. June through medical school during the Vietnam War, funding his research into bone marrow transplantation with a focus on treating people who had been irradiated in a nuclear disaster, the military’s big concern during the Cold War. After the Cold War ended, the military assigned Dr. June to AIDS research, specifically the T cells damaged by HIV. Working with T cells deepened his understanding of the immune system. When his wife, Cindy, died of cancer, Dr. June decided to honor her by focusing all his energy on the cure for cancer. He wanted to combine what he had learned about the immune system through his HIV research and what he knew about cell propagation through the study of bone marrow transplantation. Most doctors study either cancer or the immune system, but he had studied both and could look at cancer in a novel way. Everything in his past had prepared him for this moment. Every experience lent something.
When Dr. June and his colleague, Dr. Bruce Levine, began studying how the body fights disease, researchers had been making progress, but very slow progress, in pursuit of training the immune system to attack cancer. The body’s immune system has a sophisticated response to disease, able to annihilate a wide array of threats. When pathogens assault the body, white blood cells identify the invaders quickly and react with a multi-pronged assault, but the system doesn’t respond to cancer. The immune system is trained to distinguish between self and non-self, meaning that if the system is working properly, it will not attack its own cells. Cancer cells
