Former classmate regrets: his father died of cancertreatment. His father, over 70 year old, farmer , could shoulder-hold a tank ofnatural gas up to 7 floor before treatment. When diagnosed, the old man'spredicted for 6-month to 12-month life. His father didn’t want any surgery ofpain as he said he got good life and didn’t want any painful surgery andtreatment. All children, however, are so successful that they couldn't acceptno-treatment for their father. The old man got through standard treatment:surgery, radiation and chemotherapy, died of cancer in five months.
Another old man of 70+-year-old in the same village, was sopoor to afford any surgery, radiation and chemotherapy, waiting to die at home.This old man still lives now after five years of diagnosis.
What happens? I don’t know as I thought it’s always personal– you can’t draw any conclusion out of these individual cases. I’ve been thinkingas knowing many cancer patients’ journey of treatment: What’s the bestsolution? I don’t know the answer. How about you? Some thoughts and patientsstory are as follows.
How to deal with cancer?
“We may over-reacttoward cancer cells, ‘‘the
invading aliens,’’which lead to over-treating and injure our
own body by usingaggressive multi-modalities (surgery,
radiation, andchemotherapies) [8]. Perhaps, we ought to
consider thatcancer cells share similar citizenship, demanding
to survive on theEarth because their survivorship
is driven by theirevolutional driving force [9]. Sustaining the
biodiversity andheterogeneity may balance organisms or
organs out of thehostile environment [10,11]. As such,
managing tumorgrowth rather than eliminating it should be
a new guideline fortreating tumors. The eliminating-cancer
treatments driveproducing populations of drug-resistant
tumor cells uponeliminating the drug-sensitive cells while
managing tumorgrowth to treat tumors with minimum
doses of drug so asto modulate the survival of some drugsensitive
cells [12,13]. Thistreatment paradigm may help the
drug-sensitivecells out-compete the resistant ones upon
completion of drugtreatment, thereby keeping tumors alive
but small and manageable[1,14].
‘‘Keepingtumors alive but small and manageable’’ sounds
areasonable strategy. However, how can we manage tumor
growthrather than eliminate it? We argue that managing SSS
may be an effective strategy. (STEM CELLS AND DEVELOPMENT
Volume 21,Number 4, 2012, pages 503-506.Mary Ann Liebert, Inc. DOI: 10.1089/scd.2011.0267).
~~
"Your paper is one of the most important discussions and documented evidence that indirectly support a 19th century view that the genetic/chromosomal changes found in cancer cells are spurious manifestation of the malignant state, rather than the cause of their malignant state."
Cited by Frank Arguello, MD, in his cancer clinical trial company's video clip
At 3:41 minutes (Li): This is the Future of Oncology: The Scientific Quest to Understand and T... youtu.be/KwX43KPbpDY via @YouTube
~~~
When Do You Give Up on Treating a Child With Cancer?
Andrew Levy’s parentsknew 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 THERNSTROMMAY12, 2016
When Esther and Dan Levy’sson Andrew was 14 months old, he received a diagnosis of a kind of leukemia sorare that their medical team said getting it was like being bitten by a sharkand struck by lightning at the same time.
Leukemia, a cancer ofthose cells in the bone marrow that produce new blood cells, has manyvarieties, but the most common type in children, acute lymphocytic leukemia, islargely curable. Andrew’s cancer, however, a subtype of acute megakaryoblasticleukemia (AMKL), affects only about 45 children a year nationwide and is muchmore difficult to treat. The odds of surviving this type of AMKL are roughlyeven — unless the child is one of a handful who happen to have a particulargenotype, in which case these odds plummet to a mere one in 10. Geneticanalysis 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 atLucile Packard Children’s Hospital at Stanford University, received an urgentcall from Michael Loken, the president of Hematologics Inc., a Seattle lab thatwas analyzing Andrew’s cells. Loken had recently discovered that a smallpercentage of children with AMKL had a specific phenotype — a pattern ofproteins on the surface of the leukemia cell he called R.A.M. (a former patient’sinitials) — that independently predicted a terrible outcome, with a survivalrate of about one in six. Andrew had this phenotype too.
“Has anyone ever survivedthis kind of cancer?” Dan asked Lacayo. “All I wanted to know is that it wasnot 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 theliterature.
Beginning on thatDecember morning in 2014 when Esther took Andrew to the E.R., she recalls, shefelt as if they had stepped into a horror movie, the unfolding events bothsurreal and evil. Up to that point, Esther and Dan had led, in her words, “charmedlives — picture perfect.” Only a small subset of people would sincerely saythat nothing truly bad has ever happened to them; before the diagnosis, Estherand Dan say, they were among them. When Andrew got sick, they were in theirmid-30s and energetic, optimistic and extroverted. They had both attendedStanford — Dan majored in industrial engineering, Esther in human biology, witha minor in dance — before going on to successful careers. Dan founded asports-related start-up, then became vice president of small business atFacebook, while Esther worked at Kurbo, a start-up focused on weight managementfor kids, and taught spin classes at a Jewish community center for fun. Theirown families were stable and close-knit; to recall any true adversity in eitherfamily, they had to think back to a grandmother of Dan’s whose family perishedin the Holocaust.
Once Andrew’s illness wasdiagnosed, he needed a bone-marrow transplant as swiftly as possible. First thedoctors had to kill the leukemic cells in Andrew’s bone marrow withchemotherapy, then replace them with a donor’s cells. Andrew’s 3-year-oldsister, Lea, and his 5-year-old brother, Wills, were tested, and in the family’sfirst bit of luck since the diagnosis, Wills turned out to be a perfect donormatch. Andrew underwent two rounds of chemotherapy, but there were still tracesof cancer when the transplant was performed in February 2015, putting theoutcome at high risk of failure.
The Levys had created aHelping Hands website, where friends signed up to host play dates or delivermeals (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 peoplejoined. But despite all the support, Esther felt deeply “alone with theexperience,” she says. Her former life had vanished: She was living in Andrew’shospital room, sleeping on a sofa that opened into a hard bed. She had left herjob and the rest of her family while Dan continued to work and live at homewith Wills and Lea. Her nights were punctured by Andrew’s cries; her days werespent frantically trying to distract him from his pain and nausea, cleaning uphis vomit, holding him down during blood draws and making stressful medicaldecisions. He screamed if she left him for a few minutes, even to use thebathroom or shower.
The Health Issue
After Esther and Andrewspent three months in the hospital, the entire family moved into a nearbyapartment, in order to live in a smaller space they could keep immaculatelyclean while waiting for Andrew’s new immune system to develop. Esther remainedAndrew’s full-time nurse, responsible for a dizzyingly complex regimen ofmedications and sterile changes of the IV. A bone-marrow test that April showedno traces of cancer, and Andrew was considered to be in remission. They postedvideos of him banging on his drums and singing with his toy Elmo and pretendingto play golf.
They decided that whenAndrew was well enough, they would not return to their old home but begin a newlife. They found a house in the nearby town of Atherton in the style of anEnglish country manor, encircled by hedges and white rose bushes, thatsuggested 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 roomfor Andrew.
But on June 19, themedical team told Esther and Dan that there was bad news again: Andrew’s cancerhad returned. The number of cells was small but would inevitably grow, thedoctors explained. The team presented a new plan: They would begin chemotherapyagain in preparation for a second bone-marrow transplant, perhaps using cordblood 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 thefirst transplant had been long; in a second attempt, they would be much moreso. “But the odds that it would cause all of us more suffering were 100percent,” she told me.
From the initialdiagnosis, Dan had determined that their goal was not simply to help Andrewsurvive but to keep the family intact. To choose to move back into thehospital, where they believed Andrew would die, was “a fundamental violation ofevery promise we made to ourselves and our kids that we would be togetheragain,” he told me. He felt the family had just started to heal from the monthsof separation. “The emotional scars of the experience,” he said, “would beirreparable if we ripped them open and split our family apart again.” Theydecided to stop treatment. They would move to their new house, where Andrewwould spend whatever time he had splashing in their swimming pool and playingin 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,” JenniferWillert, the pediatric oncologist in charge of the transplant, blurted out.Lacayo and Willert argued for at least trying some palliative chemotherapy toprolong Andrew’s life. Esther and Dan hesitated but ultimately declined. They calledtheir decorator friend and told her to return the furniture for Andrew’s newroom. She was one of the first people to whom they told the news: Andrew wasgoing to die.
The Levys postedthe news of their decision on June 22. They explained their thinking and askedtheir 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 thatI have a new way of looking at parenting — it is not about the length of lifethat matters, but the quality of life,” Esther wrote. “We are going to focus onquality.”
But quality time with adoomed child turned out to be impossible. The cancer cells were few enough thatthey were not yet making Andrew sick, but, Esther posted, “I can’t think ofanything more painful than spending time with your precious baby knowing thathe is going to die soon.” Parenting is teleological; parents rear a child tobecome 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 himeat junk food or watch videos on the iPad all day? Did it matter?
Photo
Andrew wrestles with his older brother, Wills. CreditLucas Foglia for The New York Times
Their older kids askedtormenting questions. Lea wanted to know whether they could buy Andrew acertain toy when he was 4 years old like her. Wills wanted to know why they hadAndrew if they knew he was going to be sick all the time.
Dan read them Mo Willems’sbook “Waiting Is Not Easy!” about an impatient elephant. As he read, he thoughtabout the waiting that had engulfed them over the previous nine months. Theyhad waited to get the right diagnosis; they had waited 100 days for thetransplanted cells to grow; they had waited for the results from the bone-marrowtests to see if the cancer was gone. “Now there are no more diagnoses,” Danwrote on Facebook. “No more tests. And no more milestones. But there iswaiting. Maybe hours, or days, or weeks.” This was the most agonizing of all:the wait for Andrew’s death.
On July 1, they movedinto their new house, and Andrew became sick. By the holiday weekend, he wasmoaning or screaming in pain whenever he was awake. Dan took a leave of absencefrom work. Esther held Andrew at all times, his body draped over hers on thecouch or the bed. Dan took food to her because she couldn’t hold him and sit upat the dinner table. Her hair began to fall out because of the stress. “It wasunbearable for him and for us,” she says.
The hospice team began tocome every day to try to control the pain with high doses of opioids. HarveyCohen, an oncologist and the medical director of the hospital’s palliative-careprogram, explained to them that as the disease progressed, Andrew would nothave enough platelets for his blood to clot. A hospice nurse told them to buydark 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 ofJuly, the hospice team told them to prepare for Andrew’s imminent death. Theycalled a rabbi, and thinking about how Andrew loved airplanes, they picked aJewish cemetery near the airport. Not wanting him to be buried alone, theypurchased grave sites for themselves as well. They established an Andrew LevyMemorial Fund to raise money for music therapy at the Lucile Packard Children’sHospital.
The members of theirmedical team visited their home to say goodbye. Andrew had stopped eating. Hewas barely moving, his breathing raspy and his complexion sallow, with theparticular look the team knew from other dying children. Sometimes he stoppedbreathing 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 toend quickly.
They called Wills and Leainto the living room — a room the kids rarely entered. Esther pulled them closeto her on the couch, and Dan sat on a cushion on the floor. They had rehearsedwhat they were going to say with Barbara Sourkes, a hospital psychiatrist withwhom they had grown close, and they made an audio recording of this moment incase they needed to discuss it with her later.
Dan told the childrenthat the transplant had been a success, and that Wills’s cells had done a greatjob, but that Andrew’s cells needed to work on their own at some point, andthey weren’t. “His body is just not working,” he said, as straightforwardly ashe could manage.
Photo
Andrew and his mother, Esther, at Bing NurserySchool in Stanford, Calif. It once seemed unlikely that Andrew would live longenough to attend. Credit Lucas Foglia for The New York Times
“Is Andrew going to getbetter?” Wills asked.
“The doctors don’t thinkso, Wills. No.”
Sourkes had advised themto 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. “SoAndrew — Andrew is going to die at some point,” Dan said. “We don’t know when.”
“I don’t like that Andrewis going to die!” Lea exclaimed and started crying.
Wills pulled the hood ofhis 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 saidunhappily. She asked if they could get a new baby to replace Andrew, and sheand Wills began to fantasize about a new baby who would make everything allbetter.
Esther returned toAndrew. “I promise, I promise you, we are not going to forget him,” she said. “Youare always going to have a brother named Andrew because he is always yourbrother, now and forever.”
“Andrew’s pieces of lovewill always be in our heart,” Lea said, and then they all agreed to watchMickey Mouse together.
The vigil stretchedon through the summer, and what they called “mirages” began to appear. In lateJuly, Esther was sitting outside with Barbara Sourkes, holding Andrew andwatching Wills shoot baskets. Suddenly Andrew sat up and reached for a ball andmanaged to throw it through his own little basketball hoop. Esther and Barbarawere speechless.
At first the mirages werebrief — Andrew would laugh when Lea showed him her bellybutton or would stackblocks for 10 minutes — and then he would lapse back into pained lethargy forthe rest of the day. But soon these episodes began to lengthen. For Esther, themirages did not feel like miracles but “evil tricks.” She went through intensesurges of anger. “I felt like, How many trials are we going to have to endure?”she says. “Are we being spared nothing?”
Esther started sendingthe medical team videos. “Andrew is eating pizza, Andrew is sitting up, Andrewis laughing,” Lacayo, their oncologist, recounts. “And we are like, What?”
Photo
Andrew Levy at home in Atherton, Calif. CreditLucas Foglia for The New York Times
In August, as the teamstruggled to account for what was happening, they theorized that in July, wheneveryone assumed Andrew was dying of cancer, he must have had a terribleinfection instead, which passed. It didn’t change the prognosis: The doctorsstressed that, while Andrew might continue to recover from that infection ashis new immune system took hold, the cancer cells were also growing and wouldeventually overwhelm him.
After a blood test showedthat his platelets were low, Cohen, the palliative-care doctor, urged them toaccept transfusions to increase Andrew’s platelets so that, even though he wasgoing to die, it would not be from bleeding to death. But at the hospital, itturned out, mysteriously, that Andrew had more platelets than at his last bloodtest, so there was no need for a transfusion that day. When Dan suggestedgiving him vitamins, Esther snapped at him. He seemed to be taking theanomalous blood test to mean Andrew was getting better, when, she says, “I hadno hope, and I needed not to have hope in order to function.” And then theyboth apologized.
In September, Andrewbegan to walk again, and his appetite and energy and dark curls grew. Dandecided to return to work. Andrew turned 2 — a birthday his parents had neverthought he would reach and knew would be his last. Esther recalls how friendsurged them to enjoy every moment, and how she would tell them: “No, this ishell, and it sucks. He is still going to die, so there is nothing joyous aboutthis time.”
When they first gotAndrew’s diagnosis, she told a night nurse that she just wanted to get herhappy-go-lucky little boy back for a single hour. She had not understood thenthat any reprieve would only mean that they would have to go through losing himall over again — “and each return will be harder than the last as Andrew growsand bonds with us,” she wrote in a post.
By October, Andrew washealthier than he had been in a year, running and playing ball with hissiblings. None of the doctors had ever seen this kind of recovery before. Theydecided to bring him back to the hospital for a bone-marrow test.
Michael Loken, who hadanalyzed Andrew’s blood work, had not been surprised that Andrew’s cancerreturned. He had been working on a paper about R.A.M., the genetic marker thatAndrew had. He had tracked 19 other cases of children with the phenotype; threeyears after the diagnosis, only two were still alive and healthy. When heexamined Andrew’s marrow this time, using a sample of 200,000 cells, he gotgoose bumps. He repeated the test with 500,000 cells. Then he called Lacayowith the news. The cancer had disappeared.
How could cancer spontaneouslydisappear? “It does feel a bit like a miracle,” says Jennifer Willert, thetransplant doctor, echoing the sentiments of others. Noting the rare evocationof a concept that stands outside science, Loken says: “It certainly defied ourexpectations with no discernible basis of happening. I guess this may be thedefinition of a miracle.”
The medical team graspedfor a scientific explanation. Because Andrew had received no treatment over thesummer, 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 hadtriggered a huge increase in his new white blood cells — and that heightenedimmune response had attacked not only the infection but the cancer cells as well.
Photo
Andrew and his father, Dan Levy, at their homein Atherton, Calif. Credit Lucas Foglia for The New York Times
The doctors theorizedthat the response was partly a product of timing: The cancer had returned justas Andrew’s new immune system grew strong enough to destroy the cancer cells. Acritical 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 anylingering cancer cells, an effect known as graft versus leukemia. Chemotherapyrarely kills every last cancer cell, so it is believed that without graftversus leukemia, the cancer will eventually grow back. This is often spoken ofas a model of so-called immunotherapy — stimulating the patient’s own immunesystem to attack cancer cells — which is widely regarded as one of the mostpromising avenues for cancer treatment.
Willert had made a keydecision to depart from Stanford’s protocol to increase Andrew’s chances ofgetting a robust graft versus leukemia effect. Typically, a leukemia patientreceives 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, inwhich 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 bemaximizing graft versus leukemia while minimizing graft versus host.
Willert, who is now atthe University of California, San Francisco, Benioff Children’s Hospital, hadadvocated 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 thebenefits outweighed the risk of graft versus host. “I fought for it because Ihave seen the power of getting rid of immune suppressants and letting the cellsdo their job,” she says. “After all, that’s the whole point of a transplant!”
The final, criticaldecision was made against medical advice: Esther and Dan’s resolution to stoptreatment and let Andrew die. Had they permitted more chemotherapy, thetreatment would have killed Wills’s cells, which were what ultimately enabled Andrewto live.
“When you havea child with a life-threatening illness, you have an irrevocably alteredexistence,” 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 afiction. She finds it difficult to reconcile bitterness over the blight ofAndrew’s illness with gratitude for the reprieve. “We are the luckiest of theunluckiest people in the world,” she says. “I truly believe that.” The storypresents itself to her as a riddle that cannot be resolved. She recalls heranger when others told them to hope. Is the lesson that their friends wereright and there is always hope? Yet it was only by letting go of hope andaccepting Andrew’s death that he lived.
She has not returned towork. “My full-time job is to help the kids feel safe again,” she says. But itis hard for her to feel safe. The two years after a transplant are the riskiesttime for a relapse; after two years that likelihood plummets, and after fiveyears, a patient is considered cured. The two-year mark is still nine monthsaway.
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“There are only twostates after such a diagnosis: disease and uncertainty,” Cohen had told them. “Eitherhe will die soon, and that’s certain — or he will continue on, and you willlive with that constant balance of hope and fear. But the balance will changeas time goes on.”
Only in the past fewweeks, Esther says, has she been able to feel that she isn’t testing fate byscheduling a dentist appointment for Andrew six months out or by feelingmoments of joy watching him without being shadowed by fear of the future. “Dayby day,” she says, “we are allowing ourselves to celebrate a little more.”
Melanie Thernstrom is acontributing writer for the magazine and the author, most recently, of “ThePain 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 articleappears in print on May 15, 2016, on page MM60 of the Sunday Magazine with theheadline: The Shark and the Lightning. Today's Paper|Subscribe