Elaine Ramos has twochildren fourteen years apart. There’s Brandon, who’s 22, and 8-year-old Kara, a lithe, outdoorsy girl who likes to collect rock and plant specimens as if she were Dorothy Ann on The Magic School Bus. Elaine, a clinical-social-work supervisor married to a professor of fine arts, is usually as diligent a food cop as any parent. But on the night in May when the family went out to celebrate Brandon’s graduation from Bard College, she got caught up in the toasting and celebration. Not until Kara pushed her burger to the edge of her plate, two thirds uneaten, did her mother anxiously note that the center was bright pink.
Five days later, Kara developed stomach cramps that made her howl with pain. Every day she spent in a community hospital near her New Paltz home grew more harrowing for the family as her E. coli infection kept fulfilling worst-case scenarios. The Ramoses were stunned to learn that there is no medicine to combat the brutal bacteria. Kara was being hospitalized for as long as it would take the toxins to march through her body, largely so doctors could pounce if her kidneys shut down or her blood cells became so damaged she would need transfusions. The pain intensified. Normally a hugger, Kara began to scream at her mother’s touch.
On her fourth day of hospitalization, she was diagnosed with a life-threatening condition, hemolytic-uremic syndrome (HUS), and transferred by ambulance to Westchester Medical Center. No sooner had Dr. Robert Weiss, a pediatric nephrologist, examined Kara in the emergency room than he asked her parents to make a critical decision: Would they let her become the twenty-eighth American child to take an investigational anti-HUS drug? Weiss assured the Ramoses that this compound of sugar and synthetic sand, designed to prevent toxins from being absorbed into the bloodstream, had no known systemic side effects. But, as with any trial drug, the long-term implications were unknown. On the other hand, it was all he had to offer. And the likelihood loomed that if Kara continued deteriorating, she could face long-term dialysis, or worse.
Elaine had had one full night’s sleep in the previous five; at this point her daughter was rasping from thirst and looking, in her mother’s words, “dreadful – horribly white.” Kara’s crisis had struck just as Joe was beginning his first week as chairman of the fine-arts department at SUNY New Paltz, and he’d been ricocheting between hospital and job.
“This decision is thrust at us – they want us to decide then and there,” Joe recalls, a lingering resentment still edging his voice. “I feel like I don’t have the training; I don’t have the facts. I’m in a situation where I’m physically and emotionally drained, and I have to make a decision that’s medical.”
On the other side of this conversation was Weiss, struggling to convey empathy yet eager to enroll a perfect candidate in a study that, he believes, holds great promise. “As much as we’re giving them written material, and we’re talking very gently and very slowly, it’s difficult to make people think about a study when they just want their kid to get better,” Weiss says later. “They don’t want to listen to this stuff, and it’s scaring the pants off them. You can see it in their faces.”
The Ramoses took the five-page consent form. They were afraid to say yes and afraid to say no. Weiss would wait “twelve nail-biting hours,” by his description, to hear their answer.
There’s something about a child’s falling into serious medical peril that seems almost anachronistic in this age of bicycle helmets and antibacterial soap, of the well-fed, vitamin-fortified, fully inoculated kid. So those parents who have come to understand the burdens of life-and-death decision-making in an era of technological explosion form an isolated and disoriented club, one whose members meet at night in the lounges by the pediatric ICUs. With the armamentarium of cure growing more sophisticated by the day – especially in New York, a hive of research scientist-physicians and teaching hospitals – few crises arise that don’t present parents with treatment choices. The rarer and deadlier a child’s situation, the more energetically doctors urge parents to shop for additional opinions; the more specialists parents consult, the more the uncertainties pile up.
Complicating matters are the tools of modern imaging, which can detect potential defects that, just years ago, would have gone undiscovered. Doctors often can’t predict whether these conditions will mend on their own or cause irreversible damage, leaving parents to decided how aggressively to intervene. On the evidence of a dimple on their newborn Danielle’s backside, Judi and David Salvatore, both of them teachers in the Jersey Turnpike town of Carteret, had to have their apparently healthy daughter’s spine MRI’d within weeks of birth – and were then offered elective surgery to prevent a paralysis that might or might not develop. But at what risk to Danielle from the surgery itself?
“These are choices parents didn’t have to face ten years ago,” notes the family’s pediatric neurosurgeon, Neil Feldstein. “They are tough calls.” After Danielle’s MRI, the Salvatores were stalled in frustration as they sought not only Feldstein’s but two – and, eventually, three – more opinions. “We had all these professionals working for us,” David Salvatore recalled, “and we couldn’t get two of them to agree on anything. So how the hell were we supposed to know what to do?”
Or consider the case of Carmen and Craig Schoenfeld, an executive secretary and a meat distributor living in Rockland County. They’re the parents of Aaron, whose rare rhabdomyosarcoma was detected following a well-baby visit when he was five months old. One of more than a dozen parents who described to New York their struggles in reaching treatment decisions, Schoenfeld says she could hardly endure listening to her pediatric oncologists and radiologists as they presented the choices: Submit Aaron either to radical surgery or to chemotherapy backed by potentially bone-stunting radiation. Carmen initially refused to consider either surgery or radiation. She says, “They didn’t know what the story would be with Aaron’s outcome, so why should I take a chance on my son?”
Another family, with parents who themselves are doctors, had both the advantage and the curse of understanding the limits of medicine with respect to their daughter’s leukemia. For all their professional preparation, Manhattan psychiatrists Philip and Elena Lister found themselves shocked again and again by the knotty weave of personal and scientific considerations behind every turn in the care of their daughter. Liza, a forcefully determined and analytical 4-year-old, was diagnosed six weeks into her first full year of preschool.
“We knew we were on some kind of hellish journey,” says Philip, who, like Elena, teaches in the medical schools at Columbia and Cornell, and speaks with a quiet precision. Yet the Listers were unprepared, Philip says, to be swarmed by a team of attendings, residents, and accompanying eminent strangers bearing treatment calendars and stacks of study materials and armed with the expectation that these parents would consent within hours to start Liza on aggressive experimental chemotherapy. From that moment, the Listers became alert to every direct and indirect message – beginning, as Philip describes what he was sensing, with “a pressure that’s more or less subtle: If you don’t agree to participate in their experimental care, can they really have the same investment of concern for you?”
“How is it that parents make a complicated decision for which they’re completely unprepared and would not be prepared for with five years of training? I spend a lot of time worrying about that,” says Dr. James Lock, a pioneering pediatric cardiologist at Boston Children’s Hospital.
Lock does most of his work in the realm of rare and life-threatening pediatric heart conditions. On a recent Monday, he had nine FedEx’d pathology reports on his desk (from California; Ohio; Auckland, New Zealand …), all from families seeking second opinions. Many of their children would be waiting in line for a transplant unless they could benefit from a high-risk surgical rescue. Lock feels so strongly about the stress involved in these dilemmas that his policy is not to recommend an alternative to the treating physician’s advice, “if two therapies are largely equal.
“It creates anxiety and unhappiness, and the parents are not going to have a mechanism for choosing.”
Research confirms what parents experience firsthand: that it’s far more stressful to make medical decisions for another person than for oneself. That usually applies in the other direction generationally, as adults make medical decisions for their parents. But it’s almost impossible to project what measure of pain or disability a child might be willing to carry into his future. “With an older parent, even though it’s hard and wrenching and sad,” says Nancy Neveloff Dubler, director of the division of bioethics at Montefiore Medical Center, “there’s a natural path to decisions that doesn’t exist in pediatrics.”
Once parents are past the shock of what one father called the “Day Zero” diagnosis, many find themselves questioning the subtexts of doctors’ messages. How much is honest difference and how much professional rivalry when two marquee-name medical teams dispense conflicting advice?
And what does it mean when a physician proposes progressively more aggressive treatments while the floor nurse seems to be using code to suggest palliative care? “This little guy is really hurting; he didn’t have such a good day,” a former New York University Medical Center neonatal nurse recalls hinting to the mother of a severely compromised infant, when she sensed the mother wanted to withdraw life support but feared rejecting the doctor’s proposals. These are not thoughts families regularly express to their doctors. More typically, they’re talked out in the webs of advice and comfort parents weave as their children become hospital neighbors.
Joe and Elaine Ramos had no parents’ support group to fall back on when they confronted the choice of giving Kara the trial drug. All they had were their internal voices, and those were questioning whether Dr. Weiss’s advice might be driven by his research interests. The principal investigator of the drug Kara was offered, pediatric nephrologist Howard Trachtman of Long Island Jewish Medical Center, says, “When I wrote this grant, our hope was that families would consent and the drug would be started within six hours.” Out of 56 who were offered the therapy, he says, “we’ve had 9 families refuse us.”
Memorial Sloan-Kettering pediatric oncologist Paul Meyers has found that parents are often swayed more by the fluctuating weather in their hospital environment than by their doctors’ presentations. “You hear, ‘The last time my child was here, the child in the next room was having a bone-marrow transplant and I watched that child die, and I watched those parents suffer. I can’t go through that with my child.’ I’ve had that reaction from parents,” Meyers says. “Or it could be, ‘I was in clinic last week, and I met the Smiths. They told me their child had a bone-marrow transplant three years ago, and I couldn’t believe how good that kid looked.’ Those things weigh on us more than we’d like to believe.”
Joe and Elaine Ramos wanted to be persuaded to try the experimental drug; by the time it was offered, Kara had become too weak to sit up. For the Ramoses, it was the five hours spent in what Joe described as “a circus” of an emergency room that gave them pause. “Our daughter was just begging for ice chips,” Elaine recalls. “A whole bunch of doctors we didn’t know would pop in and ask us questions and leave. We kept asking them about ice chips and they didn’t know anything about ice chips. So to think about being part of a study in this place …”
After Kara was moved finally from the ER to the pediatric floor at 11 p.m., they agreed to sleep on the decision. In the morning, with a clear head, Elaine Ramos consented. Even Weiss does not know if Kara got a placebo (as do one third of the children in the study) or the compound, but a day later her descent reversed. She eventually needed to be transfused but was spared dialysis. A month after leaving the hospital with anemia, Kara was well enough to start attending day camp on a modified schedule. Today, she’s back to claiming playground rights for herself and her basketball-playing buddies, though her mother says she’s retained a kind of “body memory. When she gets sick she really panics, and she’s afraid she’ll have to go back to the hospital.”
Ultimately, the Ramoses did not make “an intellectual decision” to give Kara the treatment, Elaine says. “You go from the gut.” And you pray that you won’t spend your life second-guessing.
Carmen Schoenfeld can hardly rationalize, in retrospect, why she so angrily and militantly resisted the radiation treatments being urged on Aaron by his medical team, led by Columbia-Presbyterian Babies Hospital pediatric oncologist Leonard H. Wexler. Maybe it comes down to what Wexler saw on Schoenfeld’s face – “extreme fear” – as he explained to her that Aaron’s tumor-removal surgery had left behind microscopic traces of cancer. The Schoenfelds had been blindsided, and would not quickly recover their poise. Aaron had gone into surgery for what they had been told was a hernia – only to have the urologist emerge from the operation to tell the Schoenfelds he’d discovered a tumor. After bringing their baby to a team of specialists at Columbia-Presbyterian, the Schoenfelds descended into another level of disbelief on learning that Aaron was one of just four in a million children to develop this particular cancer.
Wexler told the parents that a colleague’s surgery to remove the tumor had been less than “soul-satisfying,” and he was betting on recurrence. He presented two choices: another surgery to remove the testicle, or a less radical radiation therapy, which nonetheless carried a developmental risk because of Aaron’s tender age.
“I didn’t like my choice. It was a sick choice. I didn’t want to decide,” Carmen Schoenfeld says. “I was afraid he would be stunted, that his legs wouldn’t grow, that his pelvis would be damaged… . I remember my mother-in-law turning to us and saying, ‘But he’ll be alive.’ “
Having felt the blast of Carmen’s anger, Wexler decided to retreat temporarily from urging radiation: “I felt there was enough for this family to deal with in having a little baby going through chemotherapy,” he said. “And I felt it was more important for me to have a therapeutic relationship with this family, for them to get to know me better.” Hard choices come easier, he adds, “when you know this is not some nut who is experimenting with your kid.”
The issue was forced when Aaron’s cancer recurred within six weeks. At that point Wexler urged the Schoenfelds to take advantage of the inevitable third surgery to allow implantation of tiny radiation seeds, which could target the affected tissue more narrowly than conventional radiation. That is what they did. Aaron finished chemotherapy on his first birthday. Now 2 years old, Aaron has been cancer-free long enough to put six-month intervals between his bone scans. “And I honestly have to think that maybe the reason he did so well,” his mother says, “is because he didn’t know any better – because he didn’t feel all those feelings that older kids must feel.”
The events of the day of Danielle Salvatore’s birth were a preview of a shock-inducing epic to come. Judi Salvatore remembers the pediatrician on rounds coming into her room and telling her, “You have a healthy six-pound, seven-ounce girl.” A few minutes later, to Judi’s astonishment, a nurse brought her a pamphlet on the registry of children with special needs. “You must have the wrong room,” Judi said. “Oh, she’s fine,” the nurse answered, “but she just has this little dimple.”
The dimple on the rear of brown-haired, green-eyed Danielle was the first signal that she might have a tethered spinal cord, a condition that can prevent proper spinal growth. Uncorrected, it can cause permanent incontinence, even paralysis. Only since it’s become easily detectable through magnetic-resonance imaging have many parents faced the possibility of corrective surgery almost at birth, as the Salvatores would.
But it quickly became evident that Danielle had a more urgent problem. She’d been discovered to have several defects in her heart, most prominently a hole between her left and right ventricles.
When it came to Danielle’s heart problems – unlike the situation with her spinal cord – the Salvatores say they sought no backup opinions simply because they trusted Danielle’s cardiologists from the first time they met. Even in the worst moments – as when Danielle was taken from Judi’s arms for open-heart surgery – they never second-guessed her treatment. “We must seem like the stupidest parents going, seeing all these doctors for her spine – and with her heart, of all things, never questioning anybody,” says Judi, who cuts her skepticism with humor. “A lot of it has to do with a gut feeling about the doctors,” David says.
On this day that the Salvatores sat at their kitchen table, remembering, the buzzing sounds of their neighbors’ yard work droned over the noise of Blue’s Clues, which 4-year-old Jake Salvatore was watching in the den. His parents are not in awe of New York doctors, nor do they necessarily believe the city’s teaching hospitals offer care superior to centers closer to home (though Danielle did have her cardiac surgery done at Columbia-Presbyterian on the advice of their New Jersey cardiologists).
It was those same doctors who recommended that Danielle’s spine be looked at by pediatric neurosurgeon Neil Feldstein, who practices both in New Jersey and at Columbia-Presbyterian. Feldstein recommended surgery to cut what he saw as fibrous strands tethering Danielle’s spinal cord in its canal, but he wasn’t surprised when the Salvatores wanted a second opinion. Danielle was a constant worry to them; eating little, sleeping less, crying day and night. Considering her cardiac weakness, they wanted to be absolutely certain surgery was necessary.
When they walked into Dr. Fred Epstein’s office to see a wall full of framed magazine articles, Judi and David wondered – who was this guy? They were unaware that Beth Israel had essentially built him a pediatric-neurosurgery institute.
“There was just no rapport with him from the start,” David recalls. Epstein told the Salvatores not only that he would not recommend spinal surgery, but also that he would not have ordered the MRI. “We looked at each other, dumbfounded,” David remembers. “How could it be that everything he was telling us was the opposite of Feldstein?”
A short while later, as they sat outside Epstein’s office waiting to retrieve Danielle’s records, the Salvatores say they heard him make a disparaging remark about Feldstein. Judi flared up. “As an educator, I would never talk about another teacher in front of parents,” she says now. “We were getting the feeling that there was some history there,” David says, and indeed, they would later learn that Feldstein had trained with Epstein.
That afternoon, the Salvatores canceled the surgery with Feldstein.
“Now it starts – what a mess,” David says. They sent Danielle’s MRIs to a leader in the field of pediatric neurosurgery, Jerry Oakes at Children’s Hospital in Alabama. He seconded Feldstein’s diagnosis and recommended the surgery (assuming Danielle’s general health was acceptable). Judi, though, had grown skeptical. “Because Feldstein recommended him, now I’m wondering if this is a game where they send you to their friends who will agree with them.” Meanwhile, she said, “we’re living on the edge with Danielle. We can’t get her to keep down her cardiac meds, and every day is another fiasco.”
Feldstein would not comment on the particulars of his relationship with Epstein, but he did say, “I feel for these families because it’s an awkward situation to be in, and it’s scary. Dr. X says something can wait a year; Dr. Y says do it right away. Dr. X says it’s a simple operation; Dr. Y says it’s very complicated.”
Epstein says he made no dismissive remark about Feldstein: “I don’t feel that way about him at all. Maybe somebody says something in jest, an in-joke, and it doesn’t mean anything at all, but somebody on the outside misinterprets it.”But he adds that the Salvatores correctly interpreted his recommendation not to operate. “This child had no neurological problem,” he maintains, and at the time he felt she was unlikely to develop one. “I think the world might have been a happier place before it had MRIs,” Epstein says. “I see three or four people a week who are advised to have surgery based on scans that should never have been done in the first place.” He adds, “It’s much harder to advise someone not to do surgery than to do it, because then you’re done with it – it has an automatic end point.”
Epstein suggested that if they were still unsure they should consult the eminent neurosurgeon he considers his best friend, Luis Schut at Children’s Hospital in Philadelphia. But then a crisis intervened: The cardiac team decided they had to move quickly to surgically patch the hole. The surgery at Columbia-Presbyterian’s Babies’ Hospital went well, and Judi bonded with the director of the pediatric intensive-care unit, Howard Zucker. “There was a day when a child in the bed across from Danielle died. Dr. Zucker came up to me and said, ‘I know this was a bad day, but Danielle is going to be fine.’ And he asked me about my job, and my husband, and did I have any other children. He was talking to me like I was Judi Salvatore and not the parent of the child in bed eleven. It made such a difference.”
Danielle could not withstand another surgery for at least three months. During that time, David and Judi made a list of all their lingering questions – there were twenty – about tethered spinal cords, and went to see Schut. “He said to us, ” ‘Before you ask anything, let me tell you what I know and how I would handle this,’ ” David recalls. “By the time he gets done drawing us all these diagrams and talking, he’s nailed every question on our list.
“And he also did it so none of his friends and associates would have any problem with him. He defended Epstein in that he said he wouldn’t have MRI’d her.” Schut said he believed Danielle could develop neurological damage, and that if the Salvatores decided against the surgery they’d have to stay hyperalert for symptoms. ” ‘Now that you have this information about the spine,’ ” David recalls him saying, ” ‘I would support you 100 percent if you go ahead and operate.’ “
“We walked out of there knowing we would have the surgery,” David says. And it would be with Feldstein at Babies Hospital, where Danielle could move to Zucker’s ICU after surgery.
In the months since, Danielle has continued to be in delicate health, but the spinal surgery was, by all indications, a success. “I’m sure we feel as good about it as we do because everything turned out so well,” David says, as he watches a pink-cheeked Danielle do a fast toddle across the kitchen to inspect Jake’s piece of candy. “I guarantee if it hadn’t, the two of us would be sitting here saying to each other, “Why didn’t we find the right doctors?’ “
Within the family of Liza Lister, there was no question but that they’d go for broke, exhausting every hope for cure. And that determination began with Liza, “who made it clear that she would endure any treatment, any pain, for another minute of life,” her mother, Elena, says.
Dr. Nancy Kernan, a specialist in pediatric bone-marrow transplant at Sloan-Kettering, describes Liza as “off-the-charts intelligent.” (“When she had a pain, she could give you ten adjectives for it,” says Elena.) Kernan says, “I think this child was so bright you couldn’t withhold any information from her. I usually have a policy of answering only the questions a child asks,” instead of volunteering complicated information to young children. “It’s very rare that a 5-year-old will say, ‘Does pneumonia kill me?’ But she would ask pointed questions on a daily basis.”
On the advice of their pediatrician, the Listers initially put Liza under the care of pediatric hematologists and oncologists at Mount Sinai Medical Center. They agreed to start her on what was intended to be a two-year chemotherapy protocol. But soon after Liza’s grueling start-up round of chemo, things began to go badly. She developed a fungal infection and then two rounds of pancreatitis that forced an end to the chemotherapy for 50 days, rendering it immediately less effective.
“So we faced a big decision at that point,” Philip recalls. “Could we resume the two-year plan, or should we start all over again? We were stunned to hear that it was so nebulous, and so close a call, that our doctor called the physician-researcher who runs the protocol for advice.” They decided to resume chemotherapy where Liza had left off, and there followed a precious six months at home. Liza, who kept asking if she could go back to school, was too fragile to play with other children, but she had joyous times with her parents and her 7-year-old sister, Molly. She visited the Statue of Liberty, added more stuffed cows to her collection. Eventually she was strong enough to go to the playground.
And then, seven months into her therapy, Liza relapsed. The odds she faced were terribly reduced; her only hope became bone-marrow transplant (if she could be brought back into remission), a procedure so traumatic, so freighted with potential complications, that the treatment itself can cause death.
But there was no question of the Listers’ rejecting transplant. Apart from what her parents wanted, Liza had made it clear she would take any risk to survive. No donor match could be found for her among the flocks of relatives tested, which left the family with two less-promising options: for Liza to be implanted with her own bone marrow, extracted and cleansed, or to accept a transplant from a healthy, unrelated donor.
The head of the pediatric hematology-oncology team at Mount Sinai, Jeffrey Lipton, argued for the first option, the autologous transplant, a protocol the hospital and several others organized into the national Pediatric Oncology Group had been testing. “So we went to Sloan-Kettering,” which is affiliated with a second hospital-based research collective, the Childrens Cancer Group, “and they were utterly skeptical of autologous transplants for leukemia,” Philip recalls. “They did them all the time for other cancers, but in leukemia, where the cancer is in the bone marrow, they didn’t think they could cleanse the cells.” The Sloan-Kettering team shared with the Listers its history of successes and failures with unrelated-donor transplants, and made its case for the procedure. Philip was left to conclude “that everybody’s stake was distorted by what their research was.”
Elena says, “I don’t feel that as strongly. It’s more that there are unknowns. They don’t really know yet which is safer or better or worse, and given what they don’t know, they are therefore more inclined to support their research.”
“People who have a blind faith in what they’re told are disturbing, in some ways, to their physicians,” says Lipton. “We’re never sure if they’re willing to understand all the implications of what it is we’re telling them, and that puts an enormous burden on us. The other way around is the family who learns everything they can and understands all the arguments, and then the burden is very much on them.
“I think this family was almost handicapped by their extreme sophistication, in the sense that they were so smart and so savvy, they did so much work, that they knew they were making their decision based on incomplete scientific data. Having so much knowledge led them to the same place we were, which was that nobody knew the right answer.”
In August 1995, the Listers made the painful decision to transfer Liza into the care of Nancy Kernan and the Sloan-Kettering team. Though they felt Kernan had made the stronger case for the science, Elena says, it was helpful that in a personal way, “Nancy really got us. And she got Lizie… . I felt that she was Liza’s advocate as well as ours, and she answered her questions and helped her to make decisions with us.” Kernan understood that the Listers had come to feel that protecting Liza meant consulting on the daily procedures – questioning the necessity of every test, for example. “There is that issue of parental vigilance,” Philip says. “For an adult, it’s no big deal to get sticked, but for our child, who had no visible veins at the time, it was a very big deal.”
Then came the day of Liza’s bone-marrow harvest, and a biopsy. It revealed another, if minor, relapse. “Liza was never in full remission,” Kernan says. “We tell families a child is in borderline remission, but that’s like being a little bit pregnant.”
The Listers had been hanging on the hope of the transplant. Kernan has more experience today and probably would not recommend the procedure. At the time, though, “we were willing to go all the way for the chance that she’d walk away cured.”
Liza spent three months inside a sterile glass cubicle in the transplant unit, listening to tapes of Molly reading her stories. She developed complications relating to rejection of the donor marrow, but they were sufficiently mild that she was able to go home. But there were more complications, then a move back into the hospital. And then devastating news: The transplant had failed. The leukemia had returned.
The Listers had gotten the terrible news on a Friday. Over the weekend, they slowly tried to explain to Liza that she had no hope for a cure. Even through what Philip describes as “her pleading effort to grasp – ‘Well, isn’t there something we can do?’ ” – she was beginning to accept that there was not.
Then the family met with the oncologist who’d be charting Liza’s chemotherapy, and he did not share Kernan’s directness in answering this 5-year-old’s pointed questions. Philip remembers from that meeting that as Liza struggled to understand what her future was, the oncologist “was somewhat vague about what lay ahead. He was not able to say to her, ‘This is palliative care; this is not going to cure you.’ “
Over the course of the next week or so, there developed a terrible tension as Liza’s parents understood that she’d interpreted the doctor’s tactful aversions to mean there was still hope. “She started saying things like, ‘Well, when I get my farm,’ and Phil and I were saying, ’Aaahhhhhh,’ ” Elena recalls.
“All along we’d been on the same page, but suddenly she doesn’t understand what we understand,” Philip says. He and Elena made the decision to challenge the doctor to meet Liza on her own direct terms. “We told him what we felt we needed,” Philip recalls. There followed a remarkable session, Elena remembers, in which Liza confronted the oncologist, first by asking him – as she already had her parents – if she would live to be a teenager; she was then three months short of her 6th birthday. “He said something like, ‘I don’t have a crystal ball,’ ” before he came around to No,” Elena recalls. “And she took him on and said, ‘But will I live to my 7th birthday?’ And he kind of blanched, and he said, ‘No, I don’t think so.’ And then, ‘Will I live to my 6th birthday?’ He said, ‘I hope so.’ And then she understood.”
“In a way, a burden was lifted,” Elena says. “Now we could all mobilize for whatever time was left.”
They elected to care for Liza at home – no more hospitalization – and to accept only the chemotherapy that would ease pain and prolong her life. Liza had goals to reach; she wanted to be with Molly to celebrate her sister’s birthday. “And she really desperately wanted to learn to read,” Elena says. “She was never able to go back to school, but she was very, very intellectual” and had endured in part by hearing her mother read Chronicles of Narnia, and her father the entire Oz series.
The Listers got a home tutor, and Liza went to work on letter combinations. Her parents videotaped her sounding out words. She turned 6, and ten days later, with great difficulty, she got up to see Molly off to school on her birthday. “She began to die that day,” slowly fading over the next 48 hours, her mother recalls. “Some of the last coherent words she said were to her sister. She was able to tell her that she loved her.”
Characteristically, Liza had told her mother how she wanted these moments to go. “She wanted to be on my lap,” Elena recalls. The two were together in a big double bed. “She wanted to watch some I Love Lucy.” As the tape played, “she even chuckled,” Elena says with a sad smile. There was one other thing: “She wanted to hear her lullaby tape.” It played through Liza’s last moments.
By the time she reaches the end of this story, Elena has been wet-eyed for some time. Through her tears she looks down at her new son, Solomon Lister, who’s been napping at her feet in a portable seat. By the poster-size mounted collage of pictures of Liza and Molly is a table piled with congratulatory mail, and some baby gifts.
“I know the way we handled things wouldn’t be right for every child,” Elena says. “But Liza was able to do the things that were most important to her.” And her parents were left to draw comfort from the fact that they had done all they were able, having asked every question they could. “Knowledge is power,” Elena says. “We’re like that. She was like that.”