THE UNTHINKABLE

When her two-year-old son, Luke, woke up in the middle of the night with a terrible fever in July of 2008, Meghan Anderson knew immediately what was wrong. The former oncology nurse felt her son's stomach and knew he had a tumor. "Luke was always the one with the little pot belly before he hit his growth spurt," she says. "We never thought much about it before then, but when I felt it that night, I just knew."

Ask virtually any parent whose child has had cancer, and they'll tell you right away that they knew something was wrong long before the official diagnosis. Dharshini Wallooppillai and her husband, both internal medicine physicians, knew from the moment their three-year-old daughter Ishani tumbled from a playscape. Wallooppillai felt a lump in Ishani's calf that would soon be diagnosed as rhabdomyosarcoma.

Jonna Ewing, mother of Karoline Ryder, diagnosed at 18 months with brain cancer, says, "The date of diagnosis is kind of like a birthday. You know in your heart something isn't right, and when you finally figure it out, you thank God, because now you can finally do something."

For Jamie Deibel, diagnosed at age 12 with leukemia, the most alarming aspect of cancer treatment was the possibility of losing her hair. "That was the thing that made me most nervous," she recalls. "I have really long hair. I didn't really realize that was going to happen. When I first found out I was going to lose my hair, I stopped brushing it because I was so afraid of losing it."

Children like Luke, Ishani and Ryder, diagnosed at much younger ages, are often unaware of what's happening to them. In some cases, this ignorance truly is bliss. "You can't stop this child," says Wallooppillai of her daughter. "They fight so hard. As an adult, if I was going through what she was, I'd be feeling sorry for myself. But they don't. They rebound and just keep going. Whenever we feel down, we just look at her and think, 'Okay, I better get over it.' She's so strong."

But in many cases, children's lack of understanding of what's happening them can lead to problems with treatment. Chemotherapy is a lengthy, painful process, as Luke and his family quickly learned during his first few months of treatment for Wilms' tumor. "He had a really anxious time," Anderson recalls. "There was a needle they put in that he called the butterfly. He'd say, 'Butterfly hurts Luke,' and then he'd start screaming and crying. What two-year-old can tell you, 'I'm tired' or 'I'm nauseous?'" To help Luke adjust to the anxieties of treatment, Anderson bought him a toy doctor's kit. "We'd roleplay with him so he would feel some control over that was going on," she says. "He may be the only three-year-old who knows exactly how to listen with a stethoscope."

Luke finished his treatment on April 14 of this year, and now has scans every three months to be sure the cancer is gone. "Every little cough he has, my heart goes into my throat," Anderson says. "We call it scan anxiety. You go in and just hope they'll give you another three months with your child."

Ryder, now 8 years old and three years beyond treatment, is coping with a different kind of long-term stress. Though her follow-up scans are clean, the side effects from her years of treatment continue to impact her life. "We did two and a half years of chemo," Ewing says, "and developmentally Ryder was two years behind. They told me she needed to go into an institution. The treatment just tore her up. Her breathing is the most difficult thing. Now she's on oxygen all the time. And things are hard for her. She has to constantly be reminded about stuff like math, or the definitions of certain words. It has to be repeated and revisited constantly, and it's challenging."

Now Ewing fights to give Ryder a normal life with her twin sister, Mackenzie. "She's wise in the oddest ways," she says. "She gets adult humor where her sister doesn't, and she says really dry things. It's uncanny out of the mouth of an eight-year-old. I don't know what kind of personality she would have had. She missed a lot of kid stuff."

Ewing hopes that by age ten, Ryder will be able to go all day without oxygen, though she will still need support at night. In the meantime, she has done everything within her power to help rebuild her daughter's throat muscles to get her off her feeding tube, which she has been on for six years. "For the first time in six years, she is able to have regular water and regular drinks," she says. "I am really pushing it. The child has to drink. I want her to be able to drink champagne at her wedding one day."