When A Child Has A Terminal Illness

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York, and, after relocating to California, spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her extensive personal knowledge and expertise to enlighten our readers regarding the challenges associated with chronic illness and their profound effects on family relationships and human dynamics.  

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“A lifetime is a lifetime, whether it lasts for one night or a hundred years.” – Alice Hoffman, “The Museum of Extraordinary Things”

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.

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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.

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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.

Please join me next month to hear more about Jeffrey’s life.