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treatment, not cancer, kills a patient

(2016-05-12 10:12:17) 下一個

treatment, not cancer, kills a patient. Can you cut the deal with your gut feeling?

To treat or not to treat? You gonna make the call. To treat, then you gonna call "stop" - then, let the body recovers and heals. Cancer with its own will to survive - you can't kill cancer without killing a host - conundrum!

~~

When Do You
Give Up on
Treating a Child
With Cancer?

Andrew Levy’s parents knew that
the rare and deadly cancer in his
blood could not be beaten, so they
began to prepare for the worst. Then
something mysterious happened.

By MELANIE THERNSTROM

When Esther and Dan Levy’s son Andrew was 14 months old, he received a diagnosis of a kind of leukemia so rare that their medical team said getting it was like being bitten by a shark and struck by lightning at the same time.

Leukemia, a cancer of those cells in the bone marrow that produce new blood cells, has many varieties, but the most common type in children, acute lymphocytic leukemia, is largely curable. Andrew’s cancer, however, a subtype of acute megakaryoblastic leukemia (AMKL), affects only about 45 children a year nationwide and is much more difficult to treat. The odds of surviving this type of AMKL are roughly even — unless the child is one of a handful who happen to have a particular genotype, in which case these odds plummet to a mere one in 10. Genetic analysis revealed that Andrew was in this tiny group.

There was more bad news. Two weeks after the diagnosis, Andrew’s doctor, Norman Lacayo, an oncologist at Lucile Packard Children’s Hospital at Stanford University, received an urgent call from Michael Loken, the president of Hematologics Inc., a Seattle lab that was analyzing Andrew’s cells. Loken had recently discovered that a small percentage of children with AMKL had a specific phenotype — a pattern of proteins on the surface of the leukemia cell he called R.A.M. (a former patient’s initials) — that independently predicted a terrible outcome, with a survival rate of about one in six. Andrew had this phenotype too.

“Has anyone ever survived this kind of cancer?” Dan asked Lacayo. “All I wanted to know is that it was not impossible,” Dan recalls. Lacayo said yes, but Dan felt his answer was “foggy.” The truth was that the team couldn’t find a single equivalent case in the literature.

Beginning on that December morning in 2014 when Esther took Andrew to the E.R., she recalls, she felt as if they had stepped into a horror movie, the unfolding events both surreal and evil. Up to that point, Esther and Dan had led, in her words, “charmed lives — picture perfect.” Only a small subset of people would sincerely say that nothing truly bad has ever happened to them; before the diagnosis, Esther and Dan say, they were among them. When Andrew got sick, they were in their mid-30s and energetic, optimistic and extroverted. They had both attended Stanford — Dan majored in industrial engineering, Esther in human biology, with a minor in dance — before going on to successful careers. Dan founded a sports-related start-up, then became vice president of small business at Facebook, while Esther worked at Kurbo, a start-up focused on weight management for kids, and taught spin classes at a Jewish community center for fun. Their own families were stable and close-knit; to recall any true adversity in either family, they had to think back to a grandmother of Dan’s whose family perished in the Holocaust.

Once Andrew’s illness was diagnosed, he needed a bone-marrow transplant as swiftly as possible. First the doctors had to kill the leukemic cells in Andrew’s bone marrow with chemotherapy, then replace them with a donor’s cells. Andrew’s 3-year-old sister, Lea, and his 5-year-old brother, Wills, were tested, and in the family’s first bit of luck since the diagnosis, Wills turned out to be a perfect donor match. Andrew underwent two rounds of chemotherapy, but there were still traces of cancer when the transplant was performed in February 2015, putting the outcome at high risk of failure.

The Levys had created a Helping Hands website, where friends signed up to host play dates or deliver meals (as did our family because our children were in the same school as Wills), and a Facebook group for updates on Andrew’s illness, which 1,700 people joined. But despite all the support, Esther felt deeply “alone with the experience,” she says. Her former life had vanished: She was living in Andrew’s hospital room, sleeping on a sofa that opened into a hard bed. She had left her job and the rest of her family while Dan continued to work and live at home with Wills and Lea. Her nights were punctured by Andrew’s cries; her days were spent frantically trying to distract him from his pain and nausea, cleaning up his vomit, holding him down during blood draws and making stressful medical decisions. He screamed if she left him for a few minutes, even to use the bathroom or shower.

The Health Issue

 

After Esther and Andrew spent three months in the hospital, the entire family moved into a nearby apartment, in order to live in a smaller space they could keep immaculately clean while waiting for Andrew’s new immune system to develop. Esther remained Andrew’s full-time nurse, responsible for a dizzyingly complex regimen of medications and sterile changes of the IV. A bone-marrow test that April showed no traces of cancer, and Andrew was considered to be in remission. They posted videos of him banging on his drums and singing with his toy Elmo and pretending to play golf.

They decided that when Andrew was well enough, they would not return to their old home but begin a new life. They found a house in the nearby town of Atherton in the style of an English country manor, encircled by hedges and white rose bushes, that suggested privacy and safety. Andrew was too vulnerable to leave the apartment, so Esther could not go to see the house in person, but they bought it anyway, and she made plans with a decorator friend to create an airplane-themed room for Andrew.

But on June 19, the medical team told Esther and Dan that there was bad news again: Andrew’s cancer had returned. The number of cells was small but would inevitably grow, the doctors explained. The team presented a new plan: They would begin chemotherapy again in preparation for a second bone-marrow transplant, perhaps using cord blood this time.

“Oh, God,” Esther said, putting her head in her hands. She felt she could not go through it all again. And there was no reason to think it would work. The odds of success during the first transplant had been long; in a second attempt, they would be much more so. “But the odds that it would cause all of us more suffering were 100 percent,” she told me.

From the initial diagnosis, Dan had determined that their goal was not simply to help Andrew survive but to keep the family intact. To choose to move back into the hospital, where they believed Andrew would die, was “a fundamental violation of every promise we made to ourselves and our kids that we would be together again,” he told me. He felt the family had just started to heal from the months of separation. “The emotional scars of the experience,” he said, “would be irreparable if we ripped them open and split our family apart again.” They decided to stop treatment. They would move to their new house, where Andrew would spend whatever time he had splashing in their swimming pool and playing in the grass with Wills and Lea.

The doctors were stunned. “We love you, and we love Andrew and we’re not ready to give up,” Jennifer Willert, the pediatric oncologist in charge of the transplant, blurted out. Lacayo and Willert argued for at least trying some palliative chemotherapy to prolong Andrew’s life. Esther and Dan hesitated but ultimately declined. They called their decorator friend and told her to return the furniture for Andrew’s new room. She was one of the first people to whom they told the news: Andrew was going to die.

The Levys posted the news of their decision on June 22. They explained their thinking and asked their friends not to question their choices, recommend new treatment options, tell them about God’s plan or insist that there was hope. “I truly believe that I have a new way of looking at parenting — it is not about the length of life that matters, but the quality of life,” Esther wrote. “We are going to focus on quality.”

But quality time with a doomed child turned out to be impossible. The cancer cells were few enough that they were not yet making Andrew sick, but, Esther posted, “I can’t think of anything more painful than spending time with your precious baby knowing that he is going to die soon.” Parenting is teleological; parents rear a child to become an adult. What were their goals for Andrew now? “I am no longer ‘raising’ him to grow up to be a wonderful human being,” Esther wrote. Should she let him eat junk food or watch videos on the iPad all day? Did it matter?

 
Andrew wrestles with his older brother, Wills. Lucas Foglia for The New York Times

Their older kids asked tormenting questions. Lea wanted to know whether they could buy Andrew a certain toy when he was 4 years old like her. Wills wanted to know why they had Andrew if they knew he was going to be sick all the time.

Dan read them Mo Willems’s book “Waiting Is Not Easy!” about an impatient elephant. As he read, he thought about the waiting that had engulfed them over the previous nine months. They had waited to get the right diagnosis; they had waited 100 days for the transplanted cells to grow; they had waited for the results from the bone-marrow tests to see if the cancer was gone. “Now there are no more diagnoses,” Dan wrote on Facebook. “No more tests. And no more milestones. But there is waiting. Maybe hours, or days, or weeks.” This was the most agonizing of all: the wait for Andrew’s death.

On July 1, they moved into their new house, and Andrew became sick. By the holiday weekend, he was moaning or screaming in pain whenever he was awake. Dan took a leave of absence from work. Esther held Andrew at all times, his body draped over hers on the couch or the bed. Dan took food to her because she couldn’t hold him and sit up at the dinner table. Her hair began to fall out because of the stress. “It was unbearable for him and for us,” she says.

 

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.

 
Andrew and his mother, Esther, at Bing Nursery School in Stanford, Calif. It once seemed unlikely that Andrew would live long enough to attend. Lucas Foglia for The New York Times

“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?”

 
Andrew Levy at home in Atherton, Calif. Lucas Foglia for The New York Times

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.

 
Andrew and his father, Dan Levy, at their home in Atherton, Calif. Lucas Foglia for The New York Times

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.”

Melanie Thernstrom is a contributing writer for the magazine and the author, most recently, of “The Pain Chronicles.”

Lucas Foglia is a photographer based in San Francisco. His second book, “Frontcountry,” was published by Nazraeli Press.

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A version of this article appears in print on May 15, 2016, on page MM60 of the Sunday Magazine with the headline: The Shark and the Lightning. Today's Paper|Subscribe

~~~~~

When Esther and Dan Levy’s son Andrew was 14 months old, he received a diagnosis of a kind of leukemia so rare that their medical team said getting it was like being bitten by a shark and struck by lightning at the same time.

Leukemia, a cancer of those cells in the bone marrow that produce new blood cells, has many varieties, but the most common type in children, acute lymphocytic leukemia, is largely curable. Andrew’s cancer, however, a subtype of acute megakaryoblastic leukemia (AMKL), affects only about 45 children a year nationwide and is much more difficult to treat. The odds of surviving this type of AMKL are roughly even — unless the child is one of a handful who happen to have a particular genotype, in which case these odds plummet to a mere one in 10. Genetic analysis revealed that Andrew was in this tiny group.

There was more bad news. Two weeks after the diagnosis, Andrew’s doctor, Norman Lacayo, an oncologist at Lucile Packard Children’s Hospital at Stanford University, received an urgent call from Michael Loken, the president of Hematologics Inc., a Seattle lab that was analyzing Andrew’s cells. Loken had recently discovered that a small percentage of children with AMKL had a specific phenotype — a pattern of proteins on the surface of the leukemia cell he called R.A.M. (a former patient’s initials) — that independently predicted a terrible outcome, with a survival rate of about one in six. Andrew had this phenotype too.

“Has anyone ever survived this kind of cancer?” Dan asked Lacayo. “All I wanted to know is that it was not impossible,” Dan recalls. Lacayo said yes, but Dan felt his answer was “foggy.” The truth was that the team couldn’t find a single equivalent case in the literature.

Beginning on that December morning in 2014 when Esther took Andrew to the E.R., she recalls, she felt as if they had stepped into a horror movie, the unfolding events both surreal and evil. Up to that point, Esther and Dan had led, in her words, “charmed lives — picture perfect.” Only a small subset of people would sincerely say that nothing truly bad has ever happened to them; before the diagnosis, Esther and Dan say, they were among them. When Andrew got sick, they were in their mid-30s and energetic, optimistic and extroverted. They had both attended Stanford — Dan majored in industrial engineering, Esther in human biology, with a minor in dance — before going on to successful careers. Dan founded a sports-related start-up, then became vice president of small business at Facebook, while Esther worked at Kurbo, a start-up focused on weight management for kids, and taught spin classes at a Jewish community center for fun. Their own families were stable and close-knit; to recall any true adversity in either family, they had to think back to a grandmother of Dan’s whose family perished in the Holocaust.

Once Andrew’s illness was diagnosed, he needed a bone-marrow transplant as swiftly as possible. First the doctors had to kill the leukemic cells in Andrew’s bone marrow with chemotherapy, then replace them with a donor’s cells. Andrew’s 3-year-old sister, Lea, and his 5-year-old brother, Wills, were tested, and in the family’s first bit of luck since the diagnosis, Wills turned out to be a perfect donor match. Andrew underwent two rounds of chemotherapy, but there were still traces of cancer when the transplant was performed in February 2015, putting the outcome at high risk of failure.

The Levys had created a Helping Hands website, where friends signed up to host play dates or deliver meals (as did our family because our children were in the same school as Wills), and a Facebook group for updates on Andrew’s illness, which 1,700 people joined. But despite all the support, Esther felt deeply “alone with the experience,” she says. Her former life had vanished: She was living in Andrew’s hospital room, sleeping on a sofa that opened into a hard bed. She had left her job and the rest of her family while Dan continued to work and live at home with Wills and Lea. Her nights were punctured by Andrew’s cries; her days were spent frantically trying to distract him from his pain and nausea, cleaning up his vomit, holding him down during blood draws and making stressful medical decisions. He screamed if she left him for a few minutes, even to use the bathroom or shower.

The Health Issue

 

After Esther and Andrew spent three months in the hospital, the entire family moved into a nearby apartment, in order to live in a smaller space they could keep immaculately clean while waiting for Andrew’s new immune system to develop. Esther remained Andrew’s full-time nurse, responsible for a dizzyingly complex regimen of medications and sterile changes of the IV. A bone-marrow test that April showed no traces of cancer, and Andrew was considered to be in remission. They posted videos of him banging on his drums and singing with his toy Elmo and pretending to play golf.

They decided that when Andrew was well enough, they would not return to their old home but begin a new life. They found a house in the nearby town of Atherton in the style of an English country manor, encircled by hedges and white rose bushes, that suggested privacy and safety. Andrew was too vulnerable to leave the apartment, so Esther could not go to see the house in person, but they bought it anyway, and she made plans with a decorator friend to create an airplane-themed room for Andrew.

But on June 19, the medical team told Esther and Dan that there was bad news again: Andrew’s cancer had returned. The number of cells was small but would inevitably grow, the doctors explained. The team presented a new plan: They would begin chemotherapy again in preparation for a second bone-marrow transplant, perhaps using cord blood this time.

“Oh, God,” Esther said, putting her head in her hands. She felt she could not go through it all again. And there was no reason to think it would work. The odds of success during the first transplant had been long; in a second attempt, they would be much more so. “But the odds that it would cause all of us more suffering were 100 percent,” she told me.

From the initial diagnosis, Dan had determined that their goal was not simply to help Andrew survive but to keep the family intact. To choose to move back into the hospital, where they believed Andrew would die, was “a fundamental violation of every promise we made to ourselves and our kids that we would be together again,” he told me. He felt the family had just started to heal from the months of separation. “The emotional scars of the experience,” he said, “would be irreparable if we ripped them open and split our family apart again.” They decided to stop treatment. They would move to their new house, where Andrew would spend whatever time he had splashing in their swimming pool and playing in the grass with Wills and Lea.

The doctors were stunned. “We love you, and we love Andrew and we’re not ready to give up,” Jennifer Willert, the pediatric oncologist in charge of the transplant, blurted out. Lacayo and Willert argued for at least trying some palliative chemotherapy to prolong Andrew’s life. Esther and Dan hesitated but ultimately declined. They called their decorator friend and told her to return the furniture for Andrew’s new room. She was one of the first people to whom they told the news: Andrew was going to die.

The Levys posted the news of their decision on June 22. They explained their thinking and asked their friends not to question their choices, recommend new treatment options, tell them about God’s plan or insist that there was hope. “I truly believe that I have a new way of looking at parenting — it is not about the length of life that matters, but the quality of life,” Esther wrote. “We are going to focus on quality.”

But quality time with a doomed child turned out to be impossible. The cancer cells were few enough that they were not yet making Andrew sick, but, Esther posted, “I can’t think of anything more painful than spending time with your precious baby knowing that he is going to die soon.” Parenting is teleological; parents rear a child to become an adult. What were their goals for Andrew now? “I am no longer ‘raising’ him to grow up to be a wonderful human being,” Esther wrote. Should she let him eat junk food or watch videos on the iPad all day? Did it matter?

 
Andrew wrestles with his older brother, Wills. Lucas Foglia for The New York Times

Their older kids asked tormenting questions. Lea wanted to know whether they could buy Andrew a certain toy when he was 4 years old like her. Wills wanted to know why they had Andrew if they knew he was going to be sick all the time.

Dan read them Mo Willems’s book “Waiting Is Not Easy!” about an impatient elephant. As he read, he thought about the waiting that had engulfed them over the previous nine months. They had waited to get the right diagnosis; they had waited 100 days for the transplanted cells to grow; they had waited for the results from the bone-marrow tests to see if the cancer was gone. “Now there are no more diagnoses,” Dan wrote on Facebook. “No more tests. And no more milestones. But there is waiting. Maybe hours, or days, or weeks.” This was the most agonizing of all: the wait for Andrew’s death.

On July 1, they moved into their new house, and Andrew became sick. By the holiday weekend, he was moaning or screaming in pain whenever he was awake. Dan took a leave of absence from work. Esther held Andrew at all times, his body draped over hers on the couch or the bed. Dan took food to her because she couldn’t hold him and sit up at the dinner table. Her hair began to fall out because of the stress. “It was unbearable for him and for us,” she says.

 

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.

 
Andrew and his mother, Esther, at Bing Nursery School in Stanford, Calif. It once seemed unlikely that Andrew would live long enough to attend. Lucas Foglia for The New York Times

“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?”

 
Andrew Levy at home in Atherton, Calif. Lucas Foglia for The New York Times

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.

 
Andrew and his father, Dan Levy, at their home in Atherton, Calif. Lucas Foglia for The New York Times

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.”

Melanie Thernstrom is a contributing writer for the magazine and the author, most recently, of “The Pain Chronicles.”

Lucas Foglia is a photographer based in San Francisco. His second book, “Frontcountry,” was published by Nazraeli Press.

Sign up for our newsletter to get the best of The New York Times Magazine delivered to your inbox every week.

A version of this article appears in print on May 15, 2016, on page MM60 of the Sunday Magazine with the headline: The Shark and the Lightning. Today's Paper|Subscribe

NMY

New Jersey 5 hours ago

This article only confirms what I know as a physician: there is so much to the human body and disease that we just don't know and sometimes we get so bogged down in data and numbers that we don't actually see the patient in front of us. My best wishes that Andrew grows and grows strong.

 
 

Anagarika Michael

Chicago, Illinois 3 hours ago

Esther and Dan seem to have made some very intelligent decisions in this case, and some that had the unintended consequence of prolonging their son's life. I am very happy for them and applaud their courage in deciding not to submit their son for more chem and the second transplant, which in retrospect would have caused his death. Huge props to Dr. Willert for the decision to use the UCSF protocol; this was a key and brave decision. Treatment for cancer is so suspect in the US at this time; killing the body in hopes of keeping it alive. The key now seems not in putting poisons into the body to kill cancer cells, but in giving the body's own systems the ability to kill these rogue cells in a targeted way. May Andrew and his family be well and happy for many, many years.

 

Hollye Jacobs

Montecito, California 3 hours ago

Having been a pediatric hospice nurse for 10 years, the title of this article alarmingly perpetuates the misunderstanding of what hospice treatment provides for children and their families. No one ever, ever, ever "gives up" on a child. When a cure no longer becomes a reasonable option, then the treatment plan changes. There is ALWAYS hope.

 
 

KittyKitty7555

New Jersey 3 hours ago

This article is a heartwarming reminder that when it comes to cancer, it seems like no one really knows what they are doing. Despite massive expenditures dating back many years (think Richard Nixon's "War on cancer"), there has been very little progress in understanding the disease process behind this illness.

Widespread screening for cancers of the prostate and breast has uncovered a vast reserve of disease that did not need to be found or treated because the patient would have to live for several hundred years before this so-called cancer ever bothered them. The proof for this is stable death rates with huge increases in the number of people treated. And cancer treatment can be a terrible ordeal with life-altering consequences. It would be great if everyone involved in cancer detection and treatment would just be honest about the uncertainties involved.

 
 

Lauren

NYC 2 hours ago

Could not agree more about the critical reasoning skills required to discern a pattern. My experience with doctors is that they are all well-meaning, but very few will really look at and think about a history and test scores as a holistic pattern. Granted, a lot of this has to do with our system--doctors have a very limited amount of time for each patient. Still, there's so much doctors miss from just looking at current tests or maybe one test back and not using an investigative mindset.

  • In Reply to Jay
 

Coolhunter

New Jersey 2 hours ago

Tells you what being human is all about. Love has no boundaries.

 

Brian

NY 2 hours ago

This is an extremely touching article.

44 years ago, our son was born with "extra hepatic biliary atresia"; a long way to say: no duct between the liver and the intestines. The liver cannot get rid of the poisonous bile it excretes. It is as rare as Andrews' cancer.

At the time it was 100% fatal in the U.S. After intense searching, we discovered a Japanese surgeon had developed a somewhat successful surgical technique to correct the problem, notrecognized by the American medical community.

To cut to the chase, we took Will to Japan, the operation performed, and we came back. Despite the best efforts of all involved, dedicated professionals in NYC and Tokyo, Will died before his 1st birthday.

Our efforts were noted by some news media and the surgery was started here. (Now, I believe a pediatric liver transplant is the preferred treatment.)

I feel great sadness while writing this, but no guilt, rather pride. We tackled the problem with everything we had. After this article, I recognize that can also include what the Levy family did. Reaching down to your core to come up with the path you take is never wrong, and would have been right in the Levys' case even with a different outcome

I wish them all the future happiness possible.

 
 

JDinTLH

Alpharetta, GA 2 hours ago

Outstanding, compelling reporting of this family's story. Thank you, thank you, thank you to the Levy family for having the courage to share their decision making and honest feelings with the world.

As a pediatric nurse for over 25 years, I sometimes feel I have seen it all, heard it all. But this piece has reminded me that, every day, that "best practices" can be improved upon only if we are willing to take a path not supported by conventional wisdom.

 

Bill Sardi

San Dimas, California 2 hours ago

Treatment bought some time. The child's immune system began to develop. Newborns rely on mother's milk for immune factors and, and, sunlight. The child got outdoors in the sun where vitamin D could do its work. Everything therapeutic mentioned in the story had to do with being outdoors. Hospitals are dark caves with treatment resistant germs lurking about. It often seems like doctors are jealous of mother nature and dismiss its many benefits. The thymus gland needed to begin activating T cells. Twer my child vitamin D pills would have been frontline therapy along with zinc (activates thymus gland) and vitamin C. Doctors now treat adults with leukemia by removing T cells, growing and activating them, and reinstilling them. Why not allow mother nature to do this?

 
 

Bruce

San Jose, CA 2 hours ago

To all the letters who claim that love was the cure, sadly, while probably some part of the totality of the cure, the 90% of children in this situation that didn't survive also had loving parents surely.

You want to know there is a reason, and something that can "win out", but Mrs. Levy's quote, "We are the luckiest of the unluckiest people in the world" is the truth. We all are busily bending the arc of our and our loved ones' lives (as it should be), but in the really big things, it is luck and statistics- as much as we may want to see miracles with some sort of reason- that rule the day.

That's okay. It is life. Incredibly hard sometimes, incredibly joyous at others. Live what you can, but don't think you live what you decide.

 

Marie Dolan

Binghamton, New York 2 hours ago

Thank you for sharing your ordeal of hope and heartbreak and for the information about the treatment that has made a difference. Your intuitive decisions with those of your doctors may help others to trust.
I was very moved and I pray that there are brighter days ahead for all of you. I hope you will write another article someday. I participate in and watch the news of Dana Farber and St Jude's and many people care deeply. I also liked the pictures with the article. They were lovely.

 

Mama Rachel, MD

Solana Beach, CA 2 hours ago

What an amazing story of hope and love! I applaud Esther and Dan's courage and commitment to keeping their family as healthy as humanly possible during this nightmare.

Nearly 30 years ago, our firstborn was diagnosed with another rare, deadly childhood cancer. Like Andrew, he endured a painful bone marrow transplant and a brief reprieve from the disease. Like Andrew, he relapsed several months later and our family faced hard choices.

After several rounds of new chemotherapy with worsening side effects failed to slow the growth of cancer, my husband and I made the impossible decision to stop treatment. Our families had a hard time understanding, and our doctors, like Andrew's, were shocked. They didn't want to give up, but we didn't see it that way.

Like the Levys, we wanted our child to have some time to live and play and experience a the childhood he had left. What followed was several months of the joys of a 4-year-old that we wouldn't trade for a slightly longer time in the hospital. When the final stage of the disease took hold, we held our son and loved him as he transitioned to a place we couldn't follow.

While the Levy's story is inspiring and hopeful, and underlines all we don't know about disease and health, it misses the more common outcome of terminal disease, which is death. Had Andrew died as everyone expected, their decision to stop treatment would still have been right for their family, as ours was for ours.

 
 

Anonymous

Texas 2 hours ago

There is so much to say about this incredibly difficult situation but I wanted to bring up just two. 1) I hope that families facing similar devastating illness do not get false hope because of a single outlying outcome. As Ms. Levy astutely pointed out, they are, "the luckiest of the unluckiest people." 2) Ms. Levy showed an amazing amount of strength and wisdom navigating the unthinkable trauma of a child's terminal illness. Her wisdom in having a realistic expectation and searching for the best quality of life for her child cannot be overstated. I wish the very best health for her and her family.

 
 

L

NYC 2 hours ago

Great story. I wish the health care, support and time off from work were afforded also to parents not so fortunate and wealthy as Dan and Levy. In most cases the decision would not be about buying a new mansion to move in, but selling anything you have to spend a few months taking care of your child.

 
 

Eileen


2 hours ago

Many thanks to Esther and Dan for sharing this story. But let's not assume there was cause (love) and effect (recovery). Many wonderful parents do the same; with a very different outcome. Those parents will rejoice when they read this! But I want them to know it was random. There was no less love and dedication. I know Ester and Dan know that too.

I do not mean to detract from the awesomeness of this story.

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TJKCB 2016-08-25 19:10:41 回複 悄悄話 我內心覺得從盡孝來說我們已經做得不算差了

　



來源: 柳眉兒 於 2016-08-25 17:45:02 [檔案] [博客] [舊帖] [給我悄悄話] 本文已被閱讀：1469 次 (880 bytes)

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他回國陪了四年，手術費，治療費都扛了大頭。我在這邊自己撐著家，他回國時兒子高一，女兒正要進高中。去年因為北京的工作有很多問題，他實在受不了才回美國的。當時他也感覺陪了母親四年，內心也覺得平安了才回來的。

他媽媽原來是在縣醫院查出問題，去省會醫院複查，最後花錢加托人，到北京協和手術和治療。這個病很多人活不過兩年，現在5年都存活，我真覺得對得起她， 治療也是很好很有效的。但她化療太久，反複複發，身體越來越差，所以現在要求來美國治。自己又完全沒有經濟能力，我們實在承擔不起了。

很艱難的選擇，我隻能咬牙捍衛自己的小家，我不想破產，也不想離婚。謝謝大家的跟帖，全都讀了。



已有0位網友點讚!



我在北京霧霾時用這個麵具！

Philip的麵條機，真的好好用啊

秘密武器空氣炸鍋：不用油的香辣炸雞翅

找一個完美的炒鍋Perfect Pans

挑個送給愛廚藝朋友的禮物

TATUNG,普通型不鏽鋼大同鍋的實用性

減少疲勞：給網蟲們推薦一樣非常適用的東西

一個小小的的detector或許會挽救很多人的生命

我的不同的鍋，不同的用法

切火鍋肉片機，蠻牛的,果然是主廚的選擇！讚！

美國生活太方便







柳眉兒發過的熱帖：
?丈夫因為個人原因要將整個家庭放到巨大風險之下，妻子是否先考慮捍衛家庭利益？
?微波爐熱東西老炸是啥原因啊？
?美國普通人可以持槍是生活常識

您的位置： 文學城 ? 論壇 ? 我愛我家 ? 我內心覺得從盡孝來說我們已經做得不算差了


所有跟帖：



? 不化療隻怕還能多撐會兒。 -soccermom- ♀ 給 soccermom 發送悄悄話 soccermom 的博客首頁 soccermom 的個人群組 (0 bytes) (1 reads) 08/25/2016 postreply 17:46:59

? lz是個好人。 -xoaa2015- ♀ 給 xoaa2015 發送悄悄話 xoaa2015 的博客首頁 xoaa2015 的個人群組 (52 bytes) (35 reads) 08/25/2016 postreply 17:47:12

? 如果說不通，技術性離婚也算是保護自己和孩子的一種辦法了。 -mickey222- ♀ 給 mickey222 發送悄悄話 mickey222 的博客首頁 mickey222 的個人群組 (0 bytes) (6 reads) 08/25/2016 postreply 17:47:20

? 協和治不了，就治不了啦，美國的平均壽命排名還沒中國高吧。 -水準- ♂ 給 水準 發送悄悄話 水準 的個人群組 (0 bytes) (2 reads) 08/25/2016 postreply 17:47:57

? 這個真是沒法勸, 需要老人自己明理. -唯一2005- ♀ 給 唯一2005 發送悄悄話 唯一2005 的博客首頁 唯一2005 的個人群組 (0 bytes) (2 reads) 08/25/2016 postreply 17:48:10

? 你好好和老公談！他得明白形勢啊。無論如何，最起碼要拖！不能糊裏糊塗就把人接來，這是底線。 -退隱老妖- ♀ 給 退隱老妖 發送悄悄話 退隱老妖 的博客首頁 退隱老妖 的個人群組 (0 bytes) (5 reads) 08/25/2016 postreply 17:48:17

? 老人幾歲？ -abalawo- ♀ 給 abalawo 發送悄悄話 abalawo 的個人群組 (0 bytes) (8 reads) 08/25/2016 postreply 17:48:36

? 70多了 -柳眉兒- ♀ 給 柳眉兒 發送悄悄話 柳眉兒 的博客首頁 柳眉兒 的個人群組 (0 bytes) (3 reads) 08/25/2016 postreply 17:49:35

? 不容易，你做得很好了。 -longnv- ♀ 給 longnv 發送悄悄話 longnv 的個人群組 (0 bytes) (0 reads) 08/25/2016 postreply 17:48:55

? 美國也救不了她的命。協和醫生給推薦美國有啥好的治療方法了？ -聽我作證- ♀ 給 聽我作證 發送悄悄話 聽我作證 的個人群組 (0 bytes) (0 reads) 08/25/2016 postreply 17:49:07

? 是啊，已經盡力了，老公問你的意見就是不同意在美國治，但是要婉轉的勸他先調查谘詢一下，也不可能立刻就來吧。 -綠蟻采菊- ♀ 給 綠蟻采菊 發送悄悄話 綠蟻采菊 的個人群組 (0 bytes) (8 reads) 08/25/2016 postreply 17:49:20

? 提出要求好幾個月了，不斷給他施壓。他越來越煩躁，昨天就對我很不客氣。 -柳眉兒- ♀ 給 柳眉兒 發送悄悄話 柳眉兒 的博客首頁 柳眉兒 的個人群組 (0 bytes) (43 reads) 08/25/2016 postreply 17:51:18

? 你要是不想離婚，就得妥協啊。 -xoaa2015- ♀ 給 xoaa2015 發送悄悄話 xoaa2015 的博客首頁 xoaa2015 的個人群組 (65 bytes) (47 reads) 08/25/2016 postreply 17:53:29

? 這個處境真是太難了，但怎麽說你的犧牲也對得起他和他的全家，他想不通是他的問題，你也不用太著急硬頂和他吵 -綠蟻采菊- ♀ 給 綠蟻采菊 發送悄悄話 綠蟻采菊 的個人群組 (38 bytes) (28 reads) 08/25/2016 postreply 17:56:01

? 你幹脆做點研究， 把要花的錢全部算出來 -綠油油- ♀ 給 綠油油 發送悄悄話 綠油油 的博客首頁 綠油油 的個人群組 (153 bytes) (56 reads) 08/25/2016 postreply 17:56:58

? 這種不能來，最後一兩個月不能離開醫院，她沒保險，沒身份，哪家醫院會白給她治？到時連止痛都不可能。 -katies- ♀ 給 katies 發送悄悄話 katies 的個人群組 (0 bytes) (3 reads) 08/25/2016 postreply 17:58:07

? 就怕她賣了房子也不夠治幾天的。 -xoaa2015- ♀ 給 xoaa2015 發送悄悄話 xoaa2015 的博客首頁 xoaa2015 的個人群組 (254 bytes) (72 reads) 08/25/2016 postreply 18:01:45

? That is my point. -綠油油- ♀ 給 綠油油 發送悄悄話 綠油油 的博客首頁 綠油油 的個人群組 (0 bytes) (0 reads) 08/25/2016 postreply 18:02:46

? 估計你老公也是吃準你不想離婚的，不然他憑什麽跟你橫？ -城裏老人- ♀ 給 城裏老人 發送悄悄話 城裏老人 的個人群組 (74 bytes) (66 reads) 08/25/2016 postreply 17:59:31

? 隻怕有人會要挾你， 讓你二選一 -joshuamama- ♀ 給 joshuamama 發送悄悄話 joshuamama 的博客首頁 joshuamama 的個人群組 (0 bytes) (8 reads) 08/25/2016 postreply 17:49:38

? 象這種老兒不Ｓ的是“禍害”，把兒孫的福分都搞完了。 -皮球- ♀ 給 皮球 發送悄悄話 皮球 的博客首頁 皮球 的個人群組 (0 bytes) (8 reads) 08/25/2016 postreply 17:50:10

? +100 -willows- ♀ 給 willows 發送悄悄話 willows 的博客首頁 willows 的個人群組 (0 bytes) (0 reads) 08/25/2016 postreply 18:00:49

? 那已經算盡力了啊。和你老公好好聊聊，他打算做到哪一步呢。 -黃玫瑰888- ♀ 給 黃玫瑰888 發送悄悄話 黃玫瑰888 的博客首頁 黃玫瑰888 的個人群組 (116 bytes) (86 reads) 08/25/2016 postreply 17:50:35

? 不是你在找借口， 是你確實負擔不起， 而且效果也不會很好 -綠油油- ♀ 給 綠油油 發送悄悄話 綠油油 的博客首頁 綠油油 的個人群組 (65 bytes) (36 reads) 08/25/2016 postreply 17:50:42

? 你真不容易，一般人做不到 -WenWen.- ♀ 給 WenWen. 發送悄悄話 WenWen. 的個人群組 (0 bytes) (1 reads) 08/25/2016 postreply 17:50:45

? 你做得不錯了，女人你還得學會為自己活 -愛吃魚魚- ♀ 給 愛吃魚魚 發送悄悄話 愛吃魚魚 的博客首頁 愛吃魚魚 的個人群組 (0 bytes) (3 reads) 08/25/2016 postreply 17:50:48

? 你已經做到最好的了。 -sunshine豬媽- ♀ 給 sunshine豬媽 發送悄悄話 sunshine豬媽 的博客首頁 sunshine豬媽 的個人群組 (0 bytes) (1 reads) 08/25/2016 postreply 17:50:48

? 可以先做一個婚內財產分割協議， -tgmomtobe- ♀ 給 tgmomtobe 發送悄悄話 tgmomtobe 的個人群組 (205 bytes) (120 reads) 08/25/2016 postreply 17:50:54

? 刨去學費就沒什麽資產了。我是打算孩子供出去後，再十幾年慢慢攢退休金。 -柳眉兒- ♀ 給 柳眉兒 發送悄悄話 柳眉兒 的博客首頁 柳眉兒 的個人群組 (0 bytes) (11 reads) 08/25/2016 postreply 18:21:37

? 都五年了 -吃喝大王- ♂ 給 吃喝大王 發送悄悄話 吃喝大王 的個人群組 (35 bytes) (101 reads) 08/25/2016 postreply 17:51:00

? 發現就是晚期，已擴散，所以他非要回去 -柳眉兒- ♀ 給 柳眉兒 發送悄悄話 柳眉兒 的博客首頁 柳眉兒 的個人群組 (0 bytes) (20 reads) 08/25/2016 postreply 17:52:42

? 他有兄弟姐妹嗎？大家好相量。 -sunshine豬媽- ♀ 給 sunshine豬媽 發送悄悄話 sunshine豬媽 的博客首頁 sunshine豬媽 的個人群組 (0 bytes) (5 reads) 08/25/2016 postreply 17:54:41

? 有，但隻有我們在美國 -柳眉兒- ♀ 給 柳眉兒 發送悄悄話 柳眉兒 的博客首頁 柳眉兒 的個人群組 (0 bytes) (8 reads) 08/25/2016 postreply 17:59:11

? 那醫藥費用兄弟們應該平分。不能隻有你們出。 -sunshine豬媽- ♀ 給 sunshine豬媽 發送悄悄話 sunshine豬媽 的博客首頁 sunshine豬媽 的個人群組 (0 bytes) (3 reads) 08/25/2016 postreply 18:02:33

? 他兩個妹妹經濟條件一般，讓她們買機票都不太可能，別說分攤了 -柳眉兒- ♀ 給 柳眉兒 發送悄悄話 柳眉兒 的博客首頁 柳眉兒 的個人群組 (0 bytes) (6 reads) 08/25/2016 postreply 18:07:19

? 我覺得你隻有先把兩孩子的學費備足，然後把自己的401K放滿，或者買個房子寫你和孩子的名。別的聽天由命。 -itistrue- ♀ 給 itistrue 發送悄悄話 itistrue 的博客首頁 itistrue 的個人群組 (0 bytes) (10 reads) 08/25/2016 postreply 17:52:50

? 學費現在就都付給學校好了，吧剩下幾年的都先付清了。 -mickey222- ♀ 給 mickey222 發送悄悄話 mickey222 的博客首頁 mickey222 的個人群組 (0 bytes) (5 reads) 08/25/2016 postreply 17:55:09

? 存在州教育基金好了。 -itistrue- ♀ 給 itistrue 發送悄悄話 itistrue 的博客首頁 itistrue 的個人群組 (0 bytes) (0 reads) 08/25/2016 postreply 17:57:38

? 是的，把孩子讀書欠的錢先還上，老的和小的問題上，還是應該先保護小的，就像醫療保險也是可以ＣＯＶＥＲ小的，不保老的 -皮球- ♀ 給 皮球 發送悄悄話 皮球 的博客首頁 皮球 的個人群組 (0 bytes) (3 reads) 08/25/2016 postreply 17:58:38

? 理解你不想離婚，也不想破產，但是如果你老公寧可破產， -城裏老人- ♀ 給 城裏老人 發送悄悄話 城裏老人 的個人群組 (62 bytes) (152 reads) 08/25/2016 postreply 17:53:49

? 那樣，婚姻的基礎就不存在了。 -退隱老妖- ♀ 給 退隱老妖 發送悄悄話 退隱老妖 的博客首頁 退隱老妖 的個人群組 (0 bytes) (8 reads) 08/25/2016 postreply 18:04:39

? 以那位老公過去幾年的表現，你覺得他顧及過婚姻基礎嗎？ -城裏老人- ♀ 給 城裏老人 發送悄悄話 城裏老人 的個人群組 (0 bytes) (3 reads) 08/25/2016 postreply 18:08:41

? 五年存活很不錯了。越往後化療越難，耐藥，體弱，往往死於並發征。 -房房房- ♀ 給 房房房 發送悄悄話 房房房 的博客首頁 房房房 的個人群組 (0 bytes) (1 reads) 08/25/2016 postreply 17:54:00

? 你做的很好了 -一笑拉- ♀ 給 一笑拉 發送悄悄話 一笑拉 的個人群組 (0 bytes) (4 reads) 08/25/2016 postreply 17:56:11

? 這個case跟伊北的熟年很象 -xiaomutou- ♀ 給 xiaomutou 發送悄悄話 xiaomutou 的個人群組 (0 bytes) (16 reads) 08/25/2016 postreply 17:59:18

? 你已經做得非常好了，千萬別因為別人說你什麽就給自己心理壓力。 -閑看- ♀ 給 閑看 發送悄悄話 閑看 的個人群組 (68 bytes) (28 reads) 08/25/2016 postreply 18:05:32

? 叫你先生來這兒，通讀一遍我們的討論。 -有言- ♂ 給 有言 發送悄悄話 有言 的博客首頁 有言 的個人群組 (0 bytes) (9 reads) 08/25/2016 postreply 18:11:07

? 你這是讓她離婚的節奏啊 -mickey222- ♀ 給 mickey222 發送悄悄話 mickey222 的博客首頁 mickey222 的個人群組 (0 bytes) (6 reads) 08/25/2016 postreply 18:15:00

? 我怎麽覺得離婚對她就是解脫呢？你看那個老公真是一無是處。 -瀟湘月_06- ♀ 給 瀟湘月_06 發送悄悄話 瀟湘月_06 的個人群組 (0 bytes) (6 reads) 08/25/2016 postreply 18:21:21

? 樓主肯定是擔心對孩子們的影響。。 -mickey222- ♀ 給 mickey222 發送悄悄話 mickey222 的博客首頁 mickey222 的個人群組 (0 bytes) (7 reads) 08/25/2016 postreply 18:23:58

? 大學生了，心理很獨立了， 應該不會有什麽傷害 -瀟湘月_06- ♀ 給 瀟湘月_06 發送悄悄話 瀟湘月_06 的個人群組 (0 bytes) (1 reads) 08/25/2016 postreply 18:26:31

? 反正我這輩子是over了，隻想求個好晚年，一家完整 -柳眉兒- ♀ 給 柳眉兒 發送悄悄話 柳眉兒 的博客首頁 柳眉兒 的個人群組 (0 bytes) (12 reads) 08/25/2016 postreply 18:29:50

? 您先生是不是他家的獨子啊，其實老人心理明白來美國也沒的治了，但就是覺得兒子是希望。 -老季2013- ♀ 給 老季2013 發送悄悄話 老季2013 的個人群組 (0 bytes) (0 reads) 08/25/2016 postreply 19:03:05

? 如果到5年複發沒法治了。癌症5年不犯算成活是有科學依據的。往往5/6年複發，往往是大爆發，無法控製了。 -cyhs- ♀ 給 cyhs 發送悄悄話 cyhs 的個人群組 (0 bytes) (3 reads) 08/25/2016 postreply 18:20:00

? 您找一個第三者最好專業人事做個詳細的報告，醫療費多少，生存率多少，以後會不會破產。 -慧- ♀ 給 慧 發送悄悄話 慧 的個人群組 (0 bytes) (1 reads) 08/25/2016 postreply 18:21:47

? 真不容易，祝福你 -秀秀- ♀ 給 秀秀 發送悄悄話 秀秀 的博客首頁 秀秀 的個人群組 (0 bytes) (0 reads) 08/25/2016 postreply 18:53:55
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