When A Child Has A Terminal Illness

Reflections on a short, full life, part one

I met Jeffrey when he was 4 years old. Cute as a proverbial button, with light brown hair, a light dusting of freckles across his nose and a winning smile, he was incredibly articulate, friendly and very, very smart.

The only child of a single mom, Jeffrey was in many ways already “the man of the house” at the ripe old age of 4. Despite his easy smile and playful demeanor, he was wise beyond his years and fiercely protective of the mom he quite obviously adored.

Jeffrey was admitted to the pediatric oncology unit with acute lymphoblastic leukemia. A “good” diagnosis as far as childhood cancer goes, ALL has a long-term survival rate of about 90 percent. Even given his gender, which made the risk of a bad outcome slightly greater than that afforded his female counterparts, Jeffrey’s chances of living a long, full life were extremely high.

Jeffrey stayed in the hospital for a long time during that first admission. Although he tolerated his chemotherapy very well, he had a fever when he came in. So, according to hospital protocol, he had to stay with us until his white blood cell count improved, which took a long time. In the interim, Jeffrey spent countless hours at the nurses station, entertaining the nursing staff while his mom was at work.

Jeffrey went home five weeks after he was first admitted. Although I was incredibly happy for him and his mom, who was exhausted from working a full-time job and spending every spare moment at the hospital with her son, his departure — which in all likelihood marked the end of any long hospital stays — was bittersweet. I had become incredibly fond of my little friend, and I was going to miss him — a lot.

Jeffrey came to visit me often during the months after he was discharged. Frequent trips to the outpatient department for chemotherapy, spinal taps and bone marrow tests meant that he was at the hospital quite a bit, and he never failed to come to the unit and say “Hi.” So I wasn’t at all surprised to see him when he came to the unit one rainy Monday afternoon.

“Hi Kathie!” he said, wearing his usual lopsided grin. I smiled back and gave him a hug, happy to see him and completely unprepared for what he was about to say. “Where’s your mom?” I asked.

“Oh, she’s talking to Dr. Mike,” Jeffrey said.

Then he handed me an admission form. His smile all but gone, his eyes averted so I could not see his pain, he said in a somber voice,

“I relapsed.”

And with those two words, my heart broke in two.

Despite our best efforts, Jeffrey’s leukemia had come back, and it had done so while he was still “on therapy”– receiving the very best medicines the medical community had at its disposal to keep his leukemia at bay. And that meant that, sooner or later, no matter how hard Jeffrey fought and no matter what the doctors and nurses did, the cancer in all likelihood was going to take over his body, and Jeffrey was going to die.

And the look in his eyes when he finally looked up at me told me that Jeffrey, now 5 years old, fully understood the reality of what was to come.

Jeffrey was admitted to the hospital many times over the next several months. His leukemia had invaded his central nervous system (the brain and spinal cord), one of the places in the body where cancer cells like to “hide.” Because chemotherapy drugs administered into the bloodstream don’t reach the brain very well, he needed frequent spinal taps so the doctors could administer his medicine directly into the spinal fluid –the liquid that surrounds the spinal cord and the brain. He also received intravenous chemotherapy to kill any stray cancer cells lingering in his bone marrow.

Jeffrey eventually went into remission again, but over the next three years, he relapsed two more times. Each time he came back for more treatment, he looked a little thinner, a little paler, a little bit frailer. But his spirit never wavered, and he never showed any sign of giving up.

But even the strongest young body can only stand so much punishment, and the will to live can only achieve so much. Within several months of his last relapse, Jeffrey had stopped responding to his chemotherapy, and the doctors reluctantly told his mom there was nothing more they could do. She and Jeffrey — now 8 years old — had already agreed that, when the time came, he would die at home. So we began to make preparations for him to be discharged with hospice support.

But illness and death don’t always perform according to plan, and in Jeffrey’s case things went terribly awry. He was home for only a few hours when he developed a high fever, uncontrollable vomiting and severe abdominal pain. Panicked, his mother rushed him back to the hospital.

The news she got there was not good.

Jeffrey had typhlitis — an inflammation of the intestines that affects patients whose immune systems are severely compromised. Under the best of circumstances, it is a life-threatening condition that is treated with antibiotics and possibly even surgery. Even in those cases, about half of the patients die. But Jeffrey was already dying: The question facing us now was how to give him what he wanted and deserved — a pain free and peaceful death.

Over the next few days, a battle raged on the pediatric oncology ward. Doctors don’t give up easily, and there was a push on the part of the medical staff to treat Jeffrey’s typhlitis aggressively, “just in case” he could recover enough to go home. I and the rest of the nursing staff fought hard to give Jeffrey what he told us he wanted when it came his time to die—to be free of the needles and procedures that he had endured without a whimper for nearly five years. Unfortunately, as is usually the case when doctors and nurses clash, the doctors mostly won. Jeffrey was on a morphine drip, but he had tubes in almost every orifice and was still thrashing about in pain.

Meanwhile, Jeffrey’s mother sat at his bedside, torn apart by grief.

It was against this backdrop that I had one of the most profound spiritual experiences of my life.

I had gone home after working the evening shift, exhausted and grieving over the horror that was unfolding in Jeffrey’s room. I took a shower, laid down on my bed and fell immediately asleep. Then, at exactly 3 a.m., I woke up. I opened my eyes, looked at the clock, and caught a glimpse of something out of the corner of my eye. Turning, I saw a face — Jeffrey’s face. But it wasn’t the pale, tortured face of the little boy I had left the night before. This child was at peace, smiling slightly, his eyes closed, those ever-present freckles scattered across his nose.