—Kari’s journal
May 29, 2010
When Dr. Ungar came into Emily’s room to discuss the test results, he had a smile on his face and spoke with confidence.
“As we suspected, Emily has standard-risk acute lymphoblastic leukemia. If your child gets cancer, this is the one to get, because we’re very good at treating this type of leukemia,” he said. “It’s what we call the garden-variety type of leukemia. It is the most common and most curable cancer in children. After Emily goes through treatment, she’ll have a long life ahead of her. She’ll grow up to be a grandmother.”
I thought this was an odd thing to say, but it must have been his way of preparing us for the scary numbers he was about to share from the tests.
The bone marrow aspirate showed that 99 percent of the cells in Emily’s bone marrow were leukemia cells. Thankfully, there were no cancer cells in her spinal fluid, which would have made the cancer more difficult to treat. She would be treated with chemotherapy to wipe out the cancer cells and make room for the bone marrow to make healthy cells again. The treatment would take two years and two months.
More than two years of chemotherapy? Kari and I looked at each other. That felt like a lifetime.
For the next month, Emily would be in the first phase of treatment called the induction phase. The goal of this phase was to get Emily into remission—meaning to eliminate most of the cancer cells. She would get IV chemotherapy once a week and take chemotherapy pills daily. The drugs would destroy all her blood cells—not only cancer cells, but also any healthy cells—suppressing her immune system. We had to be careful not to expose her to germs, which meant limiting the time she spent with other people. She would also need blood and platelet transfusions, sometimes several a week, until her bone marrow started producing healthy cells again. Emily would be in the hospital for this first week, but after that we could go home, returning to Hershey weekly for outpatient chemotherapy.
After that would be the six-month consolidation/intensification phase, where they would give her different combinations of chemotherapies to kill off any remaining cancer cells. Emily would be admitted to the hospital several times during those months for inpatient chemotherapy. If all went well, the doctor explained, the last phase was maintenance, when Emily would get chemotherapy once a month at the outpatient clinic. During each phase, she would also take chemotherapy pills, pills to keep her from contracting a certain type of pneumonia, pills for nausea, and pills for pain—up to seventeen pills on some days. In addition, anytime she ran a fever higher than 100.5 degrees, we had to take her to the emergency room for IV antibiotics or she risked getting sepsis. With her suppressed immune system, any infection could get out of control quickly.
The nurse handed us a schedule outlining which medications Emily would need each day, a schedule that she said would change every month depending on how Emily’s treatment was progressing. It was overwhelming and daunting to keep track of.
The good news was that we could be home as early as Sunday if she adjusted well to this first round of chemotherapy. Another piece of good news was that Dr. Ungar didn’t see any reason to postpone kindergarten, which Emily was supposed to start at the end of the summer. She would miss some school during the more intense weeks of chemotherapy, but there was no reason to delay.
Kari and I were worried about how sick the chemotherapy would make her and the suffering that she would go through. Yet we were happy to hear that Emily could begin school. We also liked that we had a plan to follow and we knew what to expect.
We were also surprised by the big audience that was responding to the blog. One of the ways we could boost Emily’s spirits was to read her some of the comments from all the people who wished her well, some of whom we didn’t even know. Our families and our friends had shared it with their families and their friends. Everyone in Philipsburg seemed to be following it, and a few people in different states as well.
A few hours later, one of Emily’s favorite nurses, Nurse Karli, came in to follow up on how we were understanding the diagnosis. Nurse Karli is blond and petite like Kari, and she was funny as well as beautiful, with a spirit that matched Emily’s. She was always trying to make her patients laugh. But on this visit, Nurse Karli was not joking around. We saw her tender side.
Nurse Karli gave Emily a booklet called The Story of the Bone Marrow Bandit, which she’d made for another patient with leukemia whose name was Edda. The first drawing was a cross section of a bone—Edda’s bone marrow cell factory—identifying the red blood cells, white blood cells, and the platelets. Outside the factory hung a big sign announcing that it was hiring: “White Blood Cell position available—inquire within.”
The other cells were busy doing their jobs when a not-so-nice white blood cell named Lymphocyte was hired. Nurse Karli described him as “young and immature and never did his work properly.” Then he invited his other blast friends over to his cozy spot, and they invited their blast friends, too. With so many of these loafers crowding out the productive cells, the blood cell factory had to shut down.
This simple way of describing leukemia really got Emily’s attention. She looked keenly at Nurse Karli’s drawings.
These lazy, immature white blood cells caused a panic in the organs, which started asking each other what was going on. The lungs were tired and, without fresh platelets, suddenly Edda bruised easily. Edda went to a special doctor, Captain Chemo, who brought in strong medicine. Nurse Karli drew Captain Chemo as a drop of medicine with its
