“There’s a little knife inside the capsule and a rubber dam that goes across the top,” the doctor said. “And what we’ll do is apply some suction and pull back on the outside end of the tube, and that pulls some tissue into the cap. Then the suction changes the position of the blade from locked to unlocked, and it cuts off a little bit of tissue.”
“Won’t that hurt her?” Steve asked.
“No, that part’s not painful. The only part that’s uncomfortable is passing the tube, but she’ll be very sedated. What we do is take her down to X ray and see if we’ve got the tube in the right place. And then we cut the tissue. And if there’s any trouble passing the tube through the stomach sphincter, we have a new drug we can use. But before that, we’ll get your permission because it’s still technically experimental, though it’s nothing to worry about.”
“Dr. Applebaum said you’d also check her vasoactive intestinal peptides and look for intestinal parasites,” said Priscilla.
“Yes, we’ll do a series of tests. We’ll measure her immunoglobulins—her antibodies—and do a standard blood count and stool and urine cultures. As you know we’re still operating on the theory of mucosal or inner lining damage in the bowel—that’s the purpose of the biopsy. But there are other possible diagnoses. I’m sure Dr. Applebaum has explained that to you. And you know I have the greatest respect for Mike Applebaum. I worked with him at UC when he was doing his training. We tried to entice him here as chief resident, but he went and chose UC. You couldn’t be in better hands than his. Meanwhile if you have any questions, Dr. Lamb will be here—and he’s a fine doctor, one of the best interns we’ve got here, so don’t hesitate to ask.”
“Okay. Thanks, Doctor,” said Steve. Then he departed with the boys to explore Marine World-Africa U.S.A.—the large amusement park up the peninsula. Later that day, Dr. Sunshine and Priscilla talked again.
“The nurse says Tia is doing so well, she wants to change her status from intensive care to intermediate intensive care. That way a nurse will not have to remain with her all the time. I’ll see you tomorrow morning for the biopsy. She really looks remarkably well considering all she’s been through.”
“Well, you haven’t seen her at her worst, Dr. Sunshine,” Priscilla said. “She really does get sick. She’ll be well like this and then suddenly—she’s very ill.”
Dr. Sunshine shook his head. He thought she sounded almost—offended. “I hope the biopsy will tell us what is wrong then,” he said. He did not tell her how puzzling he found the tone of her comment but he did not forget it. And two years later, when he had reason to remember her reaction, he began to believe that perhaps she had wanted to prove him wrong about Tia’s status—that perhaps she was making a prophecy.
When they returned around dinnertime, Steve left the boys in the van and went up to the ward to look for Priscilla. He found her white-faced and teary in Tia’s room.
“She’s starting an episode,” she said, “She was just fine up until a little while ago. She was playing in the playroom—she found a little toy—if you press the right button Disney heads pop up—and she played with that all afternoon. But then she started stooling at five-thirty and she’s all gray and lethargic. Oh, Steve—”
“I know, Pris, I know.” He went in to see Tia lying in her crib, her legs drawn up.
“Hey, little girl. Hey, Daddy’s girl. Are you feeling bad? Come here to Daddy.” He lifted her and placed her gently in his lap, cradling her. Her head fell back against his chest. He could feel the tears pull at the back of his eyes.
“Pris, what do you want me to do? I can stay with her if you want to be with the boys.”
“No, I’ll stay. You get something to eat and a place to park the van and then come tell me where you are. I’ll come when she’s better.”
“All right.” He kissed Tia and returned her to Priscilla. He was unable to return to the ward until after eleven, however, following several more confrontations with the guards and one conversation with the campus police about long-term parking.
Pris looked exhausted.
“How is she?” Steve asked.
“She’s starting to improve. I think it’s okay to leave, but it’s been pretty bad. She began vomiting around nine—two episodes of real projectile vomiting. And then heavy stooling. She’s been real listless. The resident just examined her and stopped all feedings—she’s not to get formula or the breast milk, and they took a blood sample for electrolytes. I just hope she’s all right for the biopsy tomorrow.”
“She will be, Pris. Come on, let’s go get some sleep. I finally found a place for the camper where they don’t hassle you.”
By the next morning, Tia was much improved. Her electrolyte readings had returned to normal, Dr. Lamb told them.
“Last night Tia had high blood sodium levels,” he explained.
“Yes, we’re used to that,” Priscilla answered. “That’s not unusual when she’s having an episode.”
Later that morning, Tia’s scheduled biopsy was performed and progressed normally. They wouldn’t know the results for a while, but as long as she was stable, Tia could leave tomorrow, Sunshine told them.
That afternoon, Steve and Priscilla drove into Palo Alto and found the Disney toy for Tia.
“Wait till you see her play with it,” Priscilla said.
The next morning, Saturday, July tenth, Tia was discharged. They’d been told that Dr. Sunshine would decide whether Tia was to go to San Francisco or San Rafael. A decision to try more hyperalimentation or further surgery would necessitate hospitalization in San Francisco. Otherwise, Sara had told them, they could bring Tia back to San Rafael.
“Tia looks okay,” Dr. Sunshine said. So they had carefully carried her downstairs—she was still hooked up to an IV that was running off a vein in her foot—and fastened her into her car seat in the van. Steve attached the IV bottle to the roof of the van for the hour-and-a-half ride back to Kaiser-San Rafael. Priscilla snapped a picture of Tia as she sat there sucking on her pacifier. Then they drove up the peninsula, through San Francisco and across the Golden Gate Bridge to San Rafael. They were just settling Tia on the ward when Sara hurried up to them.
“I’m sorry—I tried to get you before you left Stanford. You’re going to have to take her to San Francisco.”
“Oh, God, no!” said Priscilla, bursting into tears.
“Look, Dr. Shimoda—we just drove all this way—and hell, we drove right past the goddamned Kaiser in San Francisco!” Steve yelled.
“I’m sorry.”
“Well it’s so damned inconvenient. Now we’ve got the boys and we’ve gotta figure out something to do with them, and it’s hotter than hell out there, and we’ve got the damned IV to worry about—” began Steve.
“Yes, and we thought Tia’s treatment was all straightened out, that she could be here,” Priscilla sobbed. “Why didn’t you tell us if you were changing the plan? You’ve gone back on what you said, Sara.”
“I’m sorry, but everybody seems to agree that it’s better if Tia is treated in San Francisco. We’re not equipped to do hyperalimentation by IV here, which is what she needs. And she may require surgery. That’s just the way it’s going to have to be,” said Sara uncomfortably.
Priscilla buried her face in her hands, still sobbing.
“Damn all these goddamned institutions,” Steve said.
8
Six days later, Priscilla bent over Tia and pushed a tiny spoonful of rice cereal into her mouth. It was the first solid food she had been allowed in months.
The week following Tia’s return from Stanford had proved difficult. They had not exactly arrived in style, furious that they had to take Tia to San Francisco at all. And to Priscilla it had seemed to be the crowning blow that the house staff should be changing then, too, just as the doctors were talking about revising Tia’s treatment protocol. In the first few days, Priscilla had confronted Dr. Lou Guill, the new resident, and Dr. Rich Coolman, the incoming intern, because at first they both seemed unwilling to keep Priscilla informed about Tia’s treatments. It seemed to Priscilla that Coolman, in particular, reacted with defensive hostility. And the very first Monday following the trip to Stanford, Dr. Coolman exploded.
Priscilla was accustomed to having access to Tia’s weight chart. At San Rafael it was kept by the bed and Priscilla could check it whenever she wanted. At San Francisco, however, she was refused access to this. She asked Dr. Coolman about the policy and also questioned why Tia was not on IV.
“We were told Tia was to receive hyperalimentation by IV—that was why she has to be here instead of San Rafael,” Priscilla said. “If she doesn’t need it, I want to take her back to San Rafael.”
Dr. Coolman barked back angrily, apparently believing his authority was being questioned. Priscilla decided he felt threatened, so she asked Mike Applebaum to set up a meeting to discuss the situation. There she and Steve poured out their frustrations over Stanford and the lack of communication at San Francisco.
“Just keep us informed,” Steve said. “Don’t pull that mucky-muck big doctor routine.” And the social worker who was there to facilitate their dilemma supported their position. Priscilla believed that things were already much improved. But despite their efforts, the San Francisco staff still hadn’t succeeded in improving Tia’s status.
Priscilla wedged another spoonful of rice cereal into Tia’s mouth. Tia looked surprised and pleased.
“Did you forget how to chew?”
Tia smiled back at her. She put her hands up in front of her face for a moment, then threw them apart, laughing.
“Peek-a-boo,” she said.
Priscilla smiled. “Can you do this, Tia?” She snapped her fingers.
Tia put her fingers together and rubbed them, grinning.
Priscilla rushed to the door of the room and looked out at the nurses’ station.
“Look, Pat, come look at this!” she called. The nurses’ aide, Pat Middleton, who had spent so much time with Tia during her hospitalizations at San Francisco, came in and watched the show, smiling.
“She’s getting so big, Priscilla—and so smart.”
“I know,” said Priscilla. “I just wish they could figure out what’s wrong. I want to take her home so badly.”
“I know you do. What were the results over at Stanford?”
“They didn’t find anything. A normal biopsy, and the gastrin level was normal, too. You know that gets raised with certain kinds of tumors. They were also supposed to do a vasoactive intestinal peptide, but something happened to the sample—it got lost or something. And then the upper G-I series Dr. Applebaum ordered a couple of days ago—after Tia’s real bad episode on Monday—that was normal, too. So now Dr. Applebaum’s talking about exploratory surgery. Oh, Pat—I really don’t want that! She’s so little for that!”
“I know, Priscilla. But the pediatric surgeon here is really good. Maybe they’ll find something.”
“Well, I keep hoping they won’t have to do it. That’s why I suggested to Dr. Applebaum that we try feeding Tia. You know I have these friends—the Hamiltons—and their little boy was having lots of diarrhea and a failure to thrive syndrome. And Dr. Applebaum was called in on that case and recommended food, and it worked wonders. I know Dr. Applebaum thought I was nuts suggesting it—he probably thought he’d just humor a crazy mother—but he said we might as well try, that nothing else seemed to be working. I mean it was a lot less drastic than surgery, I thought.”
“Well, that’s for sure!” Pat laughed.
“Oh, God! I just thought of something!”
“What?”
“She should be getting Viokase!”
“What?”
“With the solid food! She should be getting Viokase! How can we tell if this is going to work if we don’t do it right? She can’t digest anything without Viokase! Where’s Dr. Coolman or Dr. Guill? We’ve got to get someone to write the order.”
“They’re all at a party to welcome the new house staff. Maybe we shouldn’t bother—”
“Of course we should bother them! Come on, come on—we’ve got to give it a chance to work.”
And Priscilla persisted until a doctor was tracked down and the order for Viokase written.
That night, Priscilla went home for dinner. “I think she’s getting better,” she told Steve. Later she sat down with Tia’s baby book to bring it up-to-date. She had stopped keeping the daily journal of Tia’s treatment after Tia’s central venous catheter had come out in April; then she had briefly restarted the journal for a week in June before abandoning it once more. “It’s too painful,” she told Steve.
But she still tried to keep up with this book. She had already used up a whole page—the one called “Your Medical History,” and she’d have to move on to a second page meant for later illnesses. But she found she couldn’t fill it in anymore. In fact she hadn’t written anything since March second, the day of Tia’s hospitalization.
Steve glanced over at her from his place on the couch. “Are you filling in her medical stuff?”
“No. I think I’ll wait till she comes home,” Priscilla said. She leafed back through the pages of the baby book and finally found the page she’d filled in the day Tia had arrived. In the little box that was labeled, “A Few Words to You from Mother,” she had written:
(11/5/75) My love for you existed long before I actually held you, but the first moment that you were handed to me, I was overjoyed. You were beautiful, perfect in every respect, more than I had dreamed and hoped for. After caring for you only a few hours, I felt that you had been mine forever. My feelings for you were indescribable. I only hope that I can be the Mommy that you need and deserve, that I can make up for the six months that you had no Mommy. You’re mine, Tia, and I will give you all the love and care that you need!
Below that box was one labeled, “A Few Words to You from Father.” It was blank.
“Steve, you’ve got to fill in this box for Tia’s baby book,” Priscilla said. “When she grows up, she’ll want to know how you felt when we got her.”
“I will, Pris,” Steve said. “There’s plenty of time.”
9
Sara Shimoda leaned over the still figure of Tia Phillips, willing the ambulance to accelerate.
“Come on, Tia, come on,” she muttered. “You can do it. Open those eyes.” But Tia lay quiet. It was the sickest Sara had ever seen her. She was not responding to stimulation and was in the early stages of shock.