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.