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A boy’s life

Jensen case calls for cooperation

Every year, as the leaves along Salt Lake City's east bench begin to turn red and gold against the soaring gray cliffs, I think of how good it feels to drive north on I-215 and not be headed for Primary Children's Medical Center.

Twelve years ago, summer was winding down, school was gearing up, and life was good — so good, in fact, that I remember confiding to a friend that I felt a nagging sense of foreboding.

As an assistant city editor at the Deseret News, I was working that September Saturday when my husband called to say he'd just returned from the doctor's office with our 8-year-old son, Stephen. There was some concern about his blood work and the possibility of leukemia.

My foreboding turned to mild panic, and my mind raced with all the possibilities. As I drove home, I wondered whether I was blowing things out of proportion.

Cancer had already invaded my inner circle, with the treatment taking its horrific toll on my mother — and by extension, our family — not once but twice. I had seen walking death before. Yet how grateful I am she is alive to this day.

But Stephen seemed so healthy. He played soccer, raced his bike to school, played hard with the neighborhood gang. It had to be a mistake. There must be an explanation that defied science. We needed it to be OK.

My husband and I played both sides in our minds, over and over again, feeling a slow-motion sense of warped time and space engulf us over the next 24 hours. On Sunday morning, as we left for Primary Children's, I remember closing the door and knowing that our lives would never be the same again. Yet I hoped against hope that they would.

It was not to be.

Dr. Richard Lemons, a pediatric oncologist, confirmed our worst fears. Though we didn't know it at the time, he was the leading researcher in the country on our son's form of cancer — acute promyelocytic leukemia — an extremely rare and aggressive disease in children that didn't tolerate survivors.

In the blur of the bone-marrow aspiration, we were dazed at the implications. My mother had gone through months of radiation and chemotherapy at the hospital next door. I was haunted at the thought of nearly killing someone to cure them and had no desire to put my son or my family through it.

Yet without treatment, we were told Stephen had only weeks to live. We had caught this stealthy killer in the first stages, and there was hope for extending his life. If the doctors could get him into remission, there was even the possibility of a bone-marrow transplant.

We were trying to comprehend the gravity of it and talking about "quality of life" when the ultimatum came: "Your son will be treated. If you choose to forgo treatment, the state will take custody of him, and he will be treated."

Stunned beyond the stupor we were feeling, we looked at each other with our mouths open. "You could take him away from us?" As my husband questioned further, I sat awestruck at the tears of anger that were rushing to join the fearful rivulets running down my cheeks.

How dare they threaten us like that? They didn't even know us, or how we loved our son or how we would do anything we could to save his life, even if only to prolong it. Yet uppermost in our minds was how it would affect him — how painful, how long, how many bone-marrow aspirations, how much nausea. And when do you say "no more"? We were seeking to do the least harm with the best result.

The unspoken implication of the ultimatum — that we might be unfit parents if we wanted something different — stabbed through even the pain of the diagnosis. With time and perspective, I understood why. But at the time, it was insult added to injury. They asked if we wanted a second opinion.

As we questioned further and learned of Dr. Lemons' expertise, it seemed ludicrous to waste time getting one. The clock was ticking, and Stephen was admitted the next day. Family and friends rallied around, providing invaluable physical and emotional support. We stepped through the rotating doors of the hospital in late September, not knowing that we would literally live there until April, and that once we left, we would return a year later for several more months.

The first night as we held Stephen's hand, Dr. Lemons remained by his bedside, packing his nonstop nosebleed with a series of "rhino rockets." Amazingly good service for him to stay with us all night, we thought. It wasn't until we had become hospital veterans that we realized what had certainly been obvious to everyone else — specialty doctors are only there at 2 a.m. if death may be imminent. Using drugs and plugs, he had kept Stephen from bleeding to death.

"Has he been having nosebleeds?" they had asked us the day before. I had seen few tissues in the wastebasket but nothing excessive. Now it wouldn't stop. There we were, 48 hours from the time we first discovered there might be a problem. What if that nosebleed had happened at home? At school? Or while we were on vacation?

Weeks later, while cleaning Stephen's room, I found bath towels covered with blood under his bed. He vaguely remembered waking at night but had never told us anything about the bleeding. I was shocked, but to an 8-year-old it was a minor nuisance not worth mentioning. It was a telltale sign I had known nothing about. Even as his mother, I couldn't know all that was transpiring inside him.

As we changed him into a hospital gown that first day, he looked and acted so normal. Just like Parker Jensen, jumping on the trampoline during the evening news.

Stephen is 20 now and is considered cured. So far, he hasn't exhibited any major after-effects despite months of radiation and chemotherapy. To me and some of his doctors, his life and health are nothing short of a miracle.

When I see Daren and Barbara Jensen, standing next to their son and proclaiming him well, I understand something of what they're feeling. I remember wanting to believe it was not real, that there had been some mistake. I didn't want the treatment to hurt more than help him. I heard one of the same, hurtful phrases they did about state custody. And I certainly wasn't going to let anyone take him away.

I also know that in my experience at Primary Children's, doctors and nurses didn't look at my son as a research project or a cash prize or a political football. They saw him as a small, scared person with cancer and a life worth trying to save. It was not simply their job to do so. It was who they had become as people and professionals, even when they made mistakes. Medicine is as much an art as it is a science, and there are simply no guarantees. Only time, lots of prayers, the doctors' best shot, and "outcomes."

At this point, I still struggle with questioning the motives of the Jensens. My case was different and I'm not in their shoes. Armchair quarterbacking is easy and cheap when emotions run high, but there are simply too many questions yet to be answered. As for felony "kidnapping," save it for real criminals.

Regarding the diagnosis, I refuse to even entertain the notion that pediatric oncologists are colluding in order to "fake it." I've scrutinized them up close. They have too much real work to do and too much at stake.

I believe there is a divine power that can change a doctor's diagnosis — or a parent's mind. But I wonder — as a boy who looks healthy becomes Gayle Ruzicka's latest poster child for limited government — who will wish they had made their decisions differently in the months to come?

The public and the media will switch focus to the newest debate. Gayle and company will find another cause. Every doctor who gave an opinion will go on treating sick children. State officials will try to keep protecting kids who need it.

And Parker Jensen will either live or die.

If he is healthy, what has the Jensens' decision to continue seeking a different diagnosis, defying court orders, fleeing to Idaho and talking to reporters done to their future, their livelihood and all their children, including Parker? If he is sick, how will they live with knowing that if they had followed medical advice given nearly four months ago, they may have spared him additional agony or even death?

At its core, this is not about "who can to tell who to do what," or even worse, who is "right." Past experience says parents and doctors and child welfare officials and judges can all believe they're doing what's right at any given point in time — and it turns out to be wrong.

Let the chest-beating stop and the cooperation proceed — on all sides — and do it quickly.

A boy's life may well depend on it.

Carrie Moore is the religion editor for the Deseret Morning News.