“Has Emily been on one of these camp-outs before?” Janine asked.
“Yes, she has,” Suzanne said. “But none this far away. And I know this is a real first for Sophie, isn’t it?”
“Yes.” She felt somehow touched that Suzanne knew Sophie’s name. But, then, the other mothers probably talked about her.
“It’s wonderful she could go,” Suzanne said. “I guess she’s feeling better, huh?”
“Much better,” Janine admitted. So much better it was scary.
“I heard she’s receiving some sort of experimental treatment.”
“Yes.” Janine nodded, then hesitated a moment before adding, “She’s in a study of an alternative medicine. She’s only been in the study a couple of months, but she’s had some dramatic improvement. I’m just praying it will last.” It was hard for Janine to give words to Sophie’s improvement, to actually hear herself say those words out loud. She lived in terror that it might not last. Since being in the study, Sophie had not only remained out of the hospital, but had finally learned to ride a bike, had eaten almost anything she wanted, and had even attended the last of week of school. For most of the year, she’d been tutored at home or in the hospital, and last year had been equally as bad. Most indicative of Sophie’s improvement, though, was the fact that she no longer needed to spend every night attached to her dialysis machine. For the last couple of weeks, she’d required treatments only two nights a week. That had given her the freedom to do something she’d never before been able to do: spend the night away from home with her friends.
Sophie’s astonishing improvement seemed miraculous, although Dr. Schaefer, the researcher behind the study, had warned Janine that her daughter still had a long road ahead of her. She would need to receive twice-weekly intravenous infusions of Herbalina, the name he had given his herbal remedy to make it more appealing to the pediatric population of the study, for at least another year. Despite the ground Sophie had gained, her own nephrologist, the doctor she’d been seeing for the past three years, scoffed at the study, as did every other specialist with whom Janine had spoken. They’d pleaded with Janine to enroll Sophie in a different, more conventional study of yet another experimental drug, but Sophie had already participated in several of those studies, and Janine could no longer bear to see her daughter suffer the side effects of the toxic drugs they gave her. With Herbalina, Sophie had only gotten better. No rashes. No cramps. No bloating. No sleepiness.
The positive results were merely a temporary reduction in symptoms, Sophie’s regular doctor and his colleagues had argued. Beneath the surface, the disease still raged. They claimed Schaefer offered false hope to the hopeless, but stopped just short of calling the small, wiry, soft-spoken doctor a charlatan. Janine could easily see the situation from their perspective. After all, the medical profession had been grappling with Sophie’s form of kidney disease for decades, searching for a way to turn the tide of its destruction. Then along comes some alternative medicine doctor, with his combination of tree bark and herbs, and he thinks he can do what no one else has been able to do: cure the incurable. Sophie’s regular doctor said Schaefer’s treatment was nothing more than a Band-Aid, and it terrified Janine that he might be right. She was just getting her daughter back. She could not bear to lose her again.
“Where are the other parents?” Janine looked behind her toward the parking lot entrance. It was nearly three.
“Oh, I think it’s just you and me. I’m going to drive a couple of the girls home. Gloria and Alison will take the rest, but we figured you’d probably be anxious to be with Sophie, so we didn’t think to ask if you wanted one of us to give her a ride.”
“You’re right,” she said. “I can’t wait to see how she made out.”
“She looked so excited when she got into the van Friday evening,” Suzanne said.
“She was.” Janine was glad she was wearing sunglasses, because her eyes suddenly burned with tears. Her baby girl. How rare it was to have seen such unfettered joy in Sophie’s face rather than the usual lines of pain and fear. The sort of fear no child should have to endure.
“She’s so cute,” Suzanne said. “Where’d she get that red hair?”
“It’s a combination of mine and her dad’s, I guess,” she said, touching her hand to her own strawberry-blond hair. Joe’s hair was dark, his eyes blue, like Sophie’s.
“It’s her kidneys that are the problem, right?” Suzanne probed.
“Yes.” Janine didn’t mind the questions. The only time she was bothered by them was when they were asked in front of her daughter, as though Sophie were deaf and blind as well as very, very ill.
“Would a transplant help?”
“She already has one of mine.” Janine smiled ruefully. “Her body rejected it.” Joe had offered one of his, as well, but he was not a good match. And now, Sophie was beyond being helped by a transplant.
“Oh, I’m so sorry,” Suzanne said kindly. “She seems to handle everything very well, though. I was so surprised when I met her, because she’s so tiny. I thought she was about six. But then this eight-year-old voice comes out of her, with a ten-year-old vocabulary. It’s such a surprise.”
Janine smiled. “Kids with kidney disease tend to be small.”
“What a lot you must have been through with her,” Suzanne said. “And to think of how much I worry when Emily has the sniffles. I really admire you.”
Janine didn’t feel admirable. She was coping the only way a desperate mother could—searching for solutions, doing all she could to make Sophie’s time on earth as happy and carefree as possible…and crying only when she was alone at night.
“Emily told me you’re a helicopter pilot,” Suzanne said.
“Oh.” Janine was surprised. “I was, a long time ago. Before Sophie got sick.” She had learned to fly a helicopter in the army and had flown for an aircraft leasing company after getting out of the reserves. Was Sophie telling people she still flew? Maybe it embarrassed her that Janine had turned from an adventurous pilot into a stay-at-home mom. But with a chronically ill child, she could imagine no other course of action.
“Emily has a secret hope that, when the girls in the troop get a little older, you might give them flying lessons.”
She had thought of that herself, in those rare, optimistic moments when she could picture Sophie reaching her teenage years. “Maybe one day,” she said. “That would be fun.” She turned to look at the parking lot entrance again.
“You must worry about Sophie when she’s away,” Suzanne said suddenly, and Janine knew that the worry was evident in her eyes, or maybe in the way she was knotting and unknotting her hands.
“Well,” she said, “this is new to me. Sophie’s never been away from home without me or her father by her side.” She’d also never been so far from emergency care, which was why Joe had said the trip was out of the question. But Sophie had begged to go. There was so little she ever asked for, and so little Janine could do for her. She said yes, after getting permission from Dr. Schaefer, who even called Joe to assure him that Sophie would be fine, as long as she watched her fluid intake and was home for dialysis on Sunday night and back at Schaefer’s office for Herbalina on Monday. Joe, who lost his temper too easily and too often, had hung up on him.
Like Sophie’s regular doctors, Joe thought Schaefer’s study was a sham, and he had argued with Janine about making Sophie into a guinea pig. Although Janine and Joe had been divorced since Sophie was five, they usually were in agreement on how to handle their daughter’s treatment. This study had driven a wedge between them and was unraveling the already frayed edges of Janine’s relationship with her parents, as well. They hadn’t wanted Sophie to take part in such an unconventional treatment, either. It wasn’t like Janine to stand up to any disapproval from Joe or her parents, at least not in recent years. But Sophie was terminally ill. Even dialysis