The hospice team began to come every day to try to control the pain with high doses of opioids. Harvey Cohen, an oncologist and the medical director of the hospital’s palliative-care program, explained to them that as the disease progressed, Andrew would not have enough platelets for his blood to clot. A hospice nurse told them to buy dark towels for Andrew’s crib, so that if he started to bleed uncontrollably, the sight would be less frightening for his siblings and for them.
During the second week of July, the hospice team told them to prepare for Andrew’s imminent death. They called a rabbi, and thinking about how Andrew loved airplanes, they picked a Jewish cemetery near the airport. Not wanting him to be buried alone, they purchased grave sites for themselves as well. They established an Andrew Levy Memorial Fund to raise money for music therapy at the Lucile Packard Children’s Hospital.
The members of their medical team visited their home to say goodbye. Andrew had stopped eating. He was barely moving, his breathing raspy and his complexion sallow, with the particular look the team knew from other dying children. Sometimes he stopped breathing momentarily, and his body would become rigid, and his face turn blue. “It’s O.K. for you to go,” Esther told him. All she wanted now was for this to end quickly.
They called Wills and Lea into the living room — a room the kids rarely entered. Esther pulled them close to her on the couch, and Dan sat on a cushion on the floor. They had rehearsed what they were going to say with Barbara Sourkes, a hospital psychiatrist with whom they had grown close, and they made an audio recording of this moment in case they needed to discuss it with her later.
Dan told the children that the transplant had been a success, and that Wills’s cells had done a great job, but that Andrew’s cells needed to work on their own at some point, and they weren’t. “His body is just not working,” he said, as straightforwardly as he could manage.
“Is Andrew going to get better?” Wills asked.
“The doctors don’t think so, Wills. No.”
Sourkes had advised them to tell the children only what they needed to know so as not to overwhelm them, because the children needed emotional space to process things their own way. “So Andrew — Andrew is going to die at some point,” Dan said. “We don’t know when.”
“I don’t like that Andrew is going to die!” Lea exclaimed and started crying.
Wills pulled the hood of his sweatshirt over his face and said he didn’t want to talk about it.
“Andrew is going to die, so that means we are only going to have four people in our family,” Lea said unhappily. She asked if they could get a new baby to replace Andrew, and she and Wills began to fantasize about a new baby who would make everything all better.
Esther returned to Andrew. “I promise, I promise you, we are not going to forget him,” she said. “You are always going to have a brother named Andrew because he is always your brother, now and forever.”
“Andrew’s pieces of love will always be in our heart,” Lea said, and then they all agreed to watch Mickey Mouse together.
The vigil stretched on through the summer, and what they called “mirages” began to appear. In late July, Esther was sitting outside with Barbara Sourkes, holding Andrew and watching Wills shoot baskets. Suddenly Andrew sat up and reached for a ball and managed to throw it through his own little basketball hoop. Esther and Barbara were speechless.
At first the mirages were brief — Andrew would laugh when Lea showed him her bellybutton or would stack blocks for 10 minutes — and then he would lapse back into pained lethargy for the rest of the day. But soon these episodes began to lengthen. For Esther, the mirages did not feel like miracles but “evil tricks.” She went through intense surges of anger. “I felt like, How many trials are we going to have to endure?” she says. “Are we being spared nothing?”
Esther started sending the medical team videos. “Andrew is eating pizza, Andrew is sitting up, Andrew is laughing,” Lacayo, their oncologist, recounts. “And we are like, What?”
In August, as the team struggled to account for what was happening, they theorized that in July, when everyone assumed Andrew was dying of cancer, he must have had a terrible infection instead, which passed. It didn’t change the prognosis: The doctors stressed that, while Andrew might continue to recover from that infection as his new immune system took hold, the cancer cells were also growing and would eventually overwhelm him.
After a blood test showed that his platelets were low, Cohen, the palliative-care doctor, urged them to accept transfusions to increase Andrew’s platelets so that, even though he was going to die, it would not be from bleeding to death. But at the hospital, it turned out, mysteriously, that Andrew had more platelets than at his last blood test, so there was no need for a transfusion that day. When Dan suggested giving him vitamins, Esther snapped at him. He seemed to be taking the anomalous blood test to mean Andrew was getting better, when, she says, “I had no hope, and I needed not to have hope in order to function.” And then they both apologized.
In September, Andrew began to walk again, and his appetite and energy and dark curls grew. Dan decided to return to work. Andrew turned 2 — a birthday his parents had never thought he would reach and knew would be his last. Esther recalls how friends urged them to enjoy every moment, and how she would tell them: “No, this is hell, and it sucks. He is still going to die, so there is nothing joyous about this time.”
When they first got Andrew’s diagnosis, she told a night nurse that she just wanted to get her happy-go-lucky little boy back for a single hour. She had not understood then that any reprieve would only mean that they would have to go through losing him all over again — “and each return will be harder than the last as Andrew grows and bonds with us,” she wrote in a post.
By October, Andrew was healthier than he had been in a year, running and playing ball with his siblings. None of the doctors had ever seen this kind of recovery before. They decided to bring him back to the hospital for a bone-marrow test.
Michael Loken, who had analyzed Andrew’s blood work, had not been surprised that Andrew’s cancer returned. He had been working on a paper about R.A.M., the genetic marker that Andrew had. He had tracked 19 other cases of children with the phenotype; three years after the diagnosis, only two were still alive and healthy. When he examined Andrew’s marrow this time, using a sample of 200,000 cells, he got goose bumps. He repeated the test with 500,000 cells. Then he called Lacayo with the news. The cancer had disappeared.
How could cancer spontaneously disappear? “It does feel a bit like a miracle,” says Jennifer Willert, the transplant doctor, echoing the sentiments of others. Noting the rare evocation of a concept that stands outside science, Loken says: “It certainly defied our expectations with no discernible basis of happening. I guess this may be the definition of a miracle.”
The medical team grasped for a scientific explanation. Because Andrew had received no treatment over the summer, the answer had to lie in the bone-marrow transplant of Wills’s cells. Their main theory was that the infection that nearly killed Andrew in July had triggered a huge increase in his new white blood cells — and that heightened immune response had attacked not only the infection but the cancer cells as well.
The doctors theorized that the response was partly a product of timing: The cancer had returned just as Andrew’s new immune system grew strong enough to destroy the cancer cells. A critical part of why transplants work is that some of the white blood cells, the T cells, that grow from the transplanted bone marrow will attack any lingering cancer cells, an effect known as graft versus leukemia. Chemotherapy rarely kills every last cancer cell, so it is believed that without graft versus leukemia, the cancer will eventually grow back. This is often spoken of as a model of so-called immunotherapy — stimulating the patient’s own immune system to attack cancer cells — which is widely regarded as one of the most promising avenues for cancer treatment.
Willert had made a key decision to depart from Stanford’s protocol to increase Andrew’s chances of getting a robust graft versus leukemia effect. Typically, a leukemia patient receives immune-suppressing drugs for at least 100 days (and often much longer) in order to avoid a serious side effect called graft versus host disease, in which new T cells attack not only the cancer cells but also the patient’s skin, liver and gastrointestinal tract. The art of a transplant is said to be maximizing graft versus leukemia while minimizing graft versus host.
Willert, who is now at the University of California, San Francisco, Benioff Children’s Hospital, had advocated a rapid early taper of Andrew’s immune-suppressing drugs on Day 60, as is the practice at U.C.S.F. and other places, because she felt that the benefits outweighed the risk of graft versus host. “I fought for it because I have seen the power of getting rid of immune suppressants and letting the cells do their job,” she says. “After all, that’s the whole point of a transplant!”
The final, critical decision was made against medical advice: Esther and Dan’s resolution to stop treatment and let Andrew die. Had they permitted more chemotherapy, the treatment would have killed Wills’s cells, which were what ultimately enabled Andrew to live.
“When you have a child with a life-threatening illness, you have an irrevocably altered existence,” Barbara Sourkes had told the Levys, and Esther feels that is true. She had always felt in control of her fate, but now she believes this to be a fiction. She finds it difficult to reconcile bitterness over the blight of Andrew’s illness with gratitude for the reprieve. “We are the luckiest of the unluckiest people in the world,” she says. “I truly believe that.” The story presents itself to her as a riddle that cannot be resolved. She recalls her anger when others told them to hope. Is the lesson that their friends were right and there is always hope? Yet it was only by letting go of hope and accepting Andrew’s death that he lived.
She has not returned to work. “My full-time job is to help the kids feel safe again,” she says. But it is hard for her to feel safe. The two years after a transplant are the riskiest time for a relapse; after two years that likelihood plummets, and after five years, a patient is considered cured. The two-year mark is still nine months away.
“There are only two states after such a diagnosis: disease and uncertainty,” Cohen had told them. “Either he will die soon, and that’s certain — or he will continue on, and you will live with that constant balance of hope and fear. But the balance will change as time goes on.”
Only in the past few weeks, Esther says, has she been able to feel that she isn’t testing fate by scheduling a dentist appointment for Andrew six months out or by feeling moments of joy watching him without being shadowed by fear of the future. “Day by day,” she says, “we are allowing ourselves to celebrate a little more.”