Oh my gosh. Sitting here (at work), hiding real tears. What a compelling and real tale, masterfully conveyed, of the soul-wrenching choices made by loving parents facing the ravages and uncertainty of a child's "incurable" disease. So thoughtful and insightful, and so brave of the Levy's to share the real-time, actual dilemmas parents face in such circumstances. The miracle makes for a (hopefully long-term) happy ending, but it's the journey that's so engaging and compelling and self-examing. I hope Hollywood picks this up. It deserves, even demands, the broadest audience. Best wishes Andrew, Esther and Dan.
5
I think Andrew was "born too young" and that Esther's non-stop holding him when they returned home may have played a small role in his recovery. A way to try a second birth...
8
God bless Andrew and his family. My sister died of leukemia when she was 7, about 38 years ago. I was born a year after her death. She did not suffer long (she died about a week after her diagnosis). As a mother now of two young children, this story made me cry. I hope Andrew lives a long and healthy life and I hope his family continues to prosper in every way. No matter the outcome, there is hope. This story reminded me of my parents' strength and resilience. Despite the painful and sudden death of their first born child, they continued to raise their three living children and they decided to have me, a year later. The siblings have all grown now, each with our own children. We will never forget our sister and we pray for the families affected by this terrible disease. We continue to hope for a cure.
1
What an amazing and deepening story. These are the types of scenarios that fascinate me the most about medicine. There is still so much to be learned and every once in a while a case like this reminds us of how little we know. The science behind this case is puzzling, but what really stood out to me were the decisions the parents made. Truly heartwarming, I hope Andrew gets better as each day passes.
Thanks for sharing this poignant story. I hope it gets more people to question the advice they get from their medical teams. Usually that advice is well taken, but not always. Patients and their families are equally qualified to make judgments about the mysteries of life.
2
One may give up treating the cancer, but one never gives up on treating the patient: with kindness, tenderness, love, compassion, respect, and consideration, whether they are six or sixty.
5
These parents sacrificed a great deal for their son. They suffered enormously. But the focus of this article is the critical decision to stop treatment. Does no one see that that decision was made selfishly as the quotes of the mother testify? Regardless of the wonderful recovery of the child, the mother chose to stop treatment so that he would die sooner and she did so to relieve HER burdens and suffering.
6
It's hard not to see joy & pain as opposites, that you get a ration of joy that's undone by a ration of pain or vice versa. What if they are independently fluid states? Andrew gets to swim with Dad, AND Andrew suffers terribly. Can we keep our hearts open in the dialectic?
2
Good thing they had money.
Also, nobody is promised an extra minute, therefore make the most of your minutes.
Also, nobody is promised an extra minute, therefore make the most of your minutes.
4
This may seem unsympathetic, but I wonder if the kid would have had so much medical care if he were poor and black.....
9
By letting go she in fact was creating her own hope that he wouldn't suffer to much, that it would be quick and her family would be ok.
We did the same thing, we withheld useless medical procedures so our daughter would suffer as least at possible but we also had hope for a miracle, and we received it: she didn't live but she died within six hours and didn't drag on for days or longer. I way more angry with God and life and for much longer than my wife. We took didn't want to hear from friends, family, church members or our pastor about God's will we wanted her to live and she lives with God for eternity but at the time I couldn't see or accept it. I'm so happy for them.
We did the same thing, we withheld useless medical procedures so our daughter would suffer as least at possible but we also had hope for a miracle, and we received it: she didn't live but she died within six hours and didn't drag on for days or longer. I way more angry with God and life and for much longer than my wife. We took didn't want to hear from friends, family, church members or our pastor about God's will we wanted her to live and she lives with God for eternity but at the time I couldn't see or accept it. I'm so happy for them.
1
Parent's realize, sometimes too late, to say no to doc's recommendation to continue treatment. We learned how little is known in medicine and that we should trust our gut. We learned too much about pediatric research & a child's life, in this instance, our child, possibly having his life extended by...possibly 3 more days! In his excitement about his research, the doc said this, giving away his focus was on research, NOT the patient. Our son could have died peacefully at age 10 or 11, rather than being saved briefly by sx & chemo to become crippled with the return of cancer over the next year, to watch himself unable to walk, experience adolescence, dying and missing out on his life. He died age 15. The Levy's made a wise decision, no matter the outcome. I do hope their son stays well and leads a full life for many years.
2
When do you give up on treating cancer? When the pain is endless and useless...
6
I don't feel that child is safe with those parents. That they would so quickly prioritize " quality of life" for their healthy children over actual life for their sick son doesn't sit right with me. Neither does their vigil of waiting for him to die like a pet on the euthanasia table. They were lucky. They might have been lucky sooner had they gone with the cord blood transplant. But they had no right to stop that child's treatment when he lacked the wherewithal to decide for himself.
4
Powerfully written story. Thank you to the family for sharing their anguish and the writer for so deeply ably conveying it. I'll pondering this in the days to come.
Two days ago, I struggled to read this article but could not put it down. Our children are our hearts and souls. Parents will do anything to give them good lives but what do you do when there is so much uncertainty and so much at stake? For me, this family, through the superb writing, crystallized the complexity, uncertainty and agony of leukemia and transplants, especially how hope becomes something you yearn for but fear and the future becomes murky and scary. How do I know? I struggled to read the article due to GVHD of the eyes (among other issues). As I have gone through treatment, I have told my doctor I would do almost anything for the sake of my children. Thank you for reminding me of that. May Andrew and his family soon see a future when the hardest decision is how to have fun that day!
Is it possible that moving to a new environment had something to do with his cure. Is it possible that something in the original environment was the cause of his cancer. For the all the talk about natural and man made chemicals in houses, researchers don't seem to have any interest in low level chemical interactions on very small segments of the population.
How many children with ADHD simply are allergic to chemicals in their homes or the food they are served?
How many children with ADHD simply are allergic to chemicals in their homes or the food they are served?
1
Just as each individual is a unique and one of a kind being, so many variables play in each life. Learning to Live in This Moment of Time is a magnificent accomplishment. For we will never have this moment again. So Live, Live in each moment. And with each individual facing the greatest challenges of Life, Each Second becomes more valuable. We are not products of fate. We are Forces of Life in the world of uncertainty and challenges each day, each second, on the journey called Life. Love is Infinite. Enjoy each moment with care, for no one is guaranteed even a nanosecond of Life.
No doubt this child and his family are charming, and no doubt they value their lives as much as the rest of us do. But "saving" him was a terrible waste of resources. How many African children could have been vaccinated, how many Mexican children could have seen a dentist for the first time in their lives, with all that money? And what about the family's pain, and that of the little boy--how many bone marrow treatments did he have, again? For how many nights did he lie in pain? What were his odds? And what about the odds he will develop another deadly cancer later in life, as so many survivors of childhood cancer do? The doctors and nurses can walk away from this, go home to their own families after a day's work upholding the ethics of the medical profession, I guess. But what are the odds this ordeal will end up destroying this child's family? This was a very expensive crap shoot, and the doctors should be ashamed of themselves for rolling the dice as they did. What's worse, this isolated success will in their minds obviate all their failures and encourage them to keep playing at this very expensive table.
When do you stop horrendously aggressive and stupidly expensive treatment? You don't even start.
When do you stop horrendously aggressive and stupidly expensive treatment? You don't even start.
4
Well, as a recipient of two bone-marrow (second stem cell) transplants, I have some insight from the patients side and also some comments on the article that I question.
First, transplanting a sibling who is not matched for gender is consider a "no - no." Many factors can not be matched with our current level of understanding. (My first UNrelated donor was a 6 of 7 match and my second UNrelated a 10 or 10 match) -- that is not a "perfect match" since so many factors are unknown in transplanting.
Being White and Wealthy is also very helpful in dealing with life-threatening diseases. (Good to have visiting Psychiatrist, for example.)
I had to FIGHT "tooth and nail" with my medical insurer to receive my second transplant when after 9 years my first began failing.) I still have several letters they sent to me saying they would NEVER approve "a second transplant for your MDS."
If I was not a "suborn" patient and well-informed I would have never received my second transplant which has extended my life by 8 years this June. (Of course, poor medical management allowed me to develop the dreaded "CHRONIC Graft vs. Host Disease, resulting in my salivary function being destroyed and my "malnutrition syndrome" (where I went from 150 pounds to my current about 105.) Dry eyes, dry mouth, dry very ITCHING SKIN so sometimes unable to sleep at night.
But as I keep telling myself -- I am alive, not under the ground.
"Miracles" come to those who can afford them.
First, transplanting a sibling who is not matched for gender is consider a "no - no." Many factors can not be matched with our current level of understanding. (My first UNrelated donor was a 6 of 7 match and my second UNrelated a 10 or 10 match) -- that is not a "perfect match" since so many factors are unknown in transplanting.
Being White and Wealthy is also very helpful in dealing with life-threatening diseases. (Good to have visiting Psychiatrist, for example.)
I had to FIGHT "tooth and nail" with my medical insurer to receive my second transplant when after 9 years my first began failing.) I still have several letters they sent to me saying they would NEVER approve "a second transplant for your MDS."
If I was not a "suborn" patient and well-informed I would have never received my second transplant which has extended my life by 8 years this June. (Of course, poor medical management allowed me to develop the dreaded "CHRONIC Graft vs. Host Disease, resulting in my salivary function being destroyed and my "malnutrition syndrome" (where I went from 150 pounds to my current about 105.) Dry eyes, dry mouth, dry very ITCHING SKIN so sometimes unable to sleep at night.
But as I keep telling myself -- I am alive, not under the ground.
"Miracles" come to those who can afford them.
4
I have a small partial understanding of what these parents went through since my father, who had multiple serious medical problems, eventually had a cerebral hemorrhage and was put on dialysis. Doctors at the Mayo Clinic wanted me to stop dialysis for him so that he would die. These parents certainly had much more difficult situation that I had. I sympathize with the enormous psychological suffering they must have endured.
However, while these parents sacrificed enormously for their child, the article repeatedly relates that they were nevertheless making critical health decisions for their child based upon their own selfish desires. They even chose to give up, stop treatment, and let him die based upon selfish motives. At a philosophical level, I think they behaved despicably.
I refused to allow doctors to stop dialysis on my father. My father too beat all the ultra-long odds the doctors claimed. My father recovered, even was able to go off dialysis after 2 months, and survived 6 months until he had another cerebral hemorrhage and died from it. This child miraculously recovered too. Apparently, it may even be that his miraculous recovery might not have occurred if the parents had not been so selfish and had not stopped treatment against the doctors' advice. Still, I am revolted by their selfishness as much as I am sympathetic to their burden.
However, while these parents sacrificed enormously for their child, the article repeatedly relates that they were nevertheless making critical health decisions for their child based upon their own selfish desires. They even chose to give up, stop treatment, and let him die based upon selfish motives. At a philosophical level, I think they behaved despicably.
I refused to allow doctors to stop dialysis on my father. My father too beat all the ultra-long odds the doctors claimed. My father recovered, even was able to go off dialysis after 2 months, and survived 6 months until he had another cerebral hemorrhage and died from it. This child miraculously recovered too. Apparently, it may even be that his miraculous recovery might not have occurred if the parents had not been so selfish and had not stopped treatment against the doctors' advice. Still, I am revolted by their selfishness as much as I am sympathetic to their burden.
3
Public Citizen tells us that 15 U.S. Congressmen/women in California support Single-Payer healthcare for all in California. If you are from this state, check and see if your Representative is one of them, and if not, ask him/her why not. With a single payer system, all Californians will be free to exercise the options that this courageous family did, to the betterment of their child and family.
2
Superbly reported story; very moving.
Our 3 year old son died of this same type of rare leukemia in 2013 after being treated at UCSF for a bone marrow transplant, with a rapid taper off immunosuppressive drugs. Reading this story was paradoxically heart-warming to know some child with the same leukemia actually survived, and yet at the same time heart breaking to know our son did not. I felt like I was re-living our whole journey all over with diagnosis, bone marrow transplant, relapse, and then trying to find some balance with quality and quantity of life. I think as a parent whose child did not survive, I will always feel some guilt thinking maybe we made some wrong decision along the way. As a parent who has been through this awful experience and did not get the happy ending, I have learned that you can not judge parents and their decisions when their child is dying. You can not know how you will act or what you will decide until you are in that specific space. As parents, we try to make the very best decisions for our kids as we can with the information we are given. I would never judge a parent who chooses to end treatment, or continue aggressive treatment. I have found the most supportive people to be other parents of children with cancer (with some children surviving and some not). I hope this family will be able to surround themselves with other parental support as they continue to move through their journey. Their sons cancer treatment will be a life long journey.
7
I have read this piece over and over today. It's beautiful. May the Levys have much joy as their beautiful children grow up.
More and more, I believe there is a genetic map of each person, and once we figure out how to read it, we'll be much better off, since we can avoid any deviations that diseases like cancer or disturbances in our systems (cardiac, etc.) cause.
What an amazing story. Thanks for sharing it.
What an amazing story. Thanks for sharing it.
1
Very simply put, where there is life, there is hope.
This story filled my heart with joy and hope. I am so happy for this family!
This is so obviously a miracle. This little boy was delivered because God has a plan for his life, plain and simple. There is no scientific answer needed. May Andrew have a long, blessed life.
Your article evokes great empathy for the
Levy Family who are living on the edge of a sword,
going from their beautiful life to the horror of pediatric cancer.
They live with the "hope and fear" that you describe and also,
thankfully, with a medical plan that has helped Andrew.
Their transplant doctor's departure from a drug protocol
and their intuitive sense of direction have given
Andrew and their family a chance to emerge intact.
Thank you for your article which reminds us of these
huge challenges.
Levy Family who are living on the edge of a sword,
going from their beautiful life to the horror of pediatric cancer.
They live with the "hope and fear" that you describe and also,
thankfully, with a medical plan that has helped Andrew.
Their transplant doctor's departure from a drug protocol
and their intuitive sense of direction have given
Andrew and their family a chance to emerge intact.
Thank you for your article which reminds us of these
huge challenges.
Whenever your loved one faces a death, it is hard and heartbreaking. but, I want to point out how lucky this couple is with their wealth. There are so many people who cannot afford to quit a job and care for their ill children, not to mention not able to buy and live in a $9 million house.
Also, I question their motivation for fundraising when they can buy and live in $9 million house in the most exclusive neighborhood in already expensive SF peninsula. I noticed that they raised $45K with a goal of $100K.
They can easily afford to give away $100,000 to other people in similar situations but not without wealth. Come on, this couple lives on $ 9 million house, yet they turn to people to raise $100,000.
Geez, I question their ability to feel compassion for other unfortunate people. They strike me as overly self-absorbed and self-indulgent "Poor me" people. Donate money to others when you can afford to buy and live in a $9 million house instead of asking money from others!
Also, I question their motivation for fundraising when they can buy and live in $9 million house in the most exclusive neighborhood in already expensive SF peninsula. I noticed that they raised $45K with a goal of $100K.
They can easily afford to give away $100,000 to other people in similar situations but not without wealth. Come on, this couple lives on $ 9 million house, yet they turn to people to raise $100,000.
Geez, I question their ability to feel compassion for other unfortunate people. They strike me as overly self-absorbed and self-indulgent "Poor me" people. Donate money to others when you can afford to buy and live in a $9 million house instead of asking money from others!
4
We all live our lives hoping that we may make a positive impact on the lives of others, and I hope this article is evidence that this is what health care workers do each and every day…they never give up. When our 2 ½ year old son was diagnosed with Leukemia, our lives were turned upside-down. In and out of the hospital we endured long days filled with complications, and sadness. We too faced a point in time when the doctors at UCSF had the thankless task of explaining to us that our son was “between a rock and a hard place.” But nobody gave up until he finally got better. For 3 ½ years this life of emergency rooms, hospitalizations, clinic visits, bald heads, infusions, surgeries, pokes, and “puke-fests” (vomiting), became the new norm. All worth it….to get the “bad guys out,” a phrase our son declared with each and every chemo dose. One evening with our child in the Pediatric ICU, we observed another family walking out after their child died. The fragility of our son's life has changed us forever. His illness has shaken the very core of who we are. We will never be the same. We know that our world can never return to "normal". Many people say that this all will be a distant memory soon - and that this period will seem like a "hiccup" in an otherwise healthy child's life. It will never be that way for us. It happened – and ironically, like them, I think we are better people, who know just how lucky we are. "Let's make America the country that cures cancer once and for all!"
2
The human body is truly a miraculous machine. What Andrew's parents witnessed was a natural form of immune modulation; an infection caught at just the right time, to beef up his immune system to where it could identify and kill cancer cells. This is very similar to new cancer treatments, which involve using certain modified pathogens to stimulate an immune response, to turn our T-Cells into cancer killers.
I am reminded of Emma Whitehead, whose T-Cells were extracted, infected with a modified HIV virus to mutate them into what doctor's called "serial killer cells", inject them back into her, and let them go to work. These bad boys completely ravaged and decimated her leukemia. She has been completely cancer free for 4 years now.
So happy for Andrew and his family.
I am reminded of Emma Whitehead, whose T-Cells were extracted, infected with a modified HIV virus to mutate them into what doctor's called "serial killer cells", inject them back into her, and let them go to work. These bad boys completely ravaged and decimated her leukemia. She has been completely cancer free for 4 years now.
So happy for Andrew and his family.
2
As others have commented, while inspirational one of the first things coming to my mind is how this illustrates the vast differences in the quality of health care you can expect based on your income. The family portrait here is surely not representative, given that the house they decided to buy cost about $9M...
4
Kudos to Andrew's parents who ultimately valued quality of life with their son in their painful decision making. After they endured the odyssey of transplant and experienced the pain & suffering, they wisely & carefully evaluated the options of more treatment & suffering with remote possibility of cure or have better memories with Andrew in his last remaining days. I am sure the parents prayed long & hard on their difficult decision of withholding further treatment. They were blessed by their decision by the miracle cure from the transplant and hopefully the medical profession can learn from this experience as well in allowing the body to fight back, despite wanting to use all heroic medical means possible, i.e., timing of treatment etc.
Great reporting by author on this moving piece of science and family dynamics.
Great reporting by author on this moving piece of science and family dynamics.
1
My fear is that people will take away from this article a message of "Don't treat cancer through the medical profession." Not a day goes by when I don't see someone in some cancer community talking about curcumin, or the Budwig protocol which states that cottage cheese and flaxseed cure cancer...or alkaline diets, or this or that herbal supplement.
Just because airplanes crash occasionally doesn't mean that magic carpets work. Just because science isn't perfect doesn't mean that quackery is. Andrew is what is called an outlier. Perhaps his case can be used to also help others. He is not out of the woods yet. This family is going to live with cancer hanging over this boy's head for as long as he lives; hopefully it will be a long and healthy one.
Ultimately we make our own choices about treatment. The Levys made a perfectly sound decision that turned out also to be a lucky one. I would hate to see the "Do nothing" message be used by anti-science fanatics to endanger those they love.
Just because airplanes crash occasionally doesn't mean that magic carpets work. Just because science isn't perfect doesn't mean that quackery is. Andrew is what is called an outlier. Perhaps his case can be used to also help others. He is not out of the woods yet. This family is going to live with cancer hanging over this boy's head for as long as he lives; hopefully it will be a long and healthy one.
Ultimately we make our own choices about treatment. The Levys made a perfectly sound decision that turned out also to be a lucky one. I would hate to see the "Do nothing" message be used by anti-science fanatics to endanger those they love.
1
Thank you for a beautifully written story.
Who knows why some cancer patients survive and others do not? Andrew has loving, intelligent, educated parents and he has had first rate medical care. I do think the loving care and attention his parents bestowed on him played a role in his recovery.
I am heartened that his health has returned and I wish his family and him the very best.
Who knows why some cancer patients survive and others do not? Andrew has loving, intelligent, educated parents and he has had first rate medical care. I do think the loving care and attention his parents bestowed on him played a role in his recovery.
I am heartened that his health has returned and I wish his family and him the very best.
This article, along with several of the "miraculous recovery" stories found in the comments below, is why I am so uneasy with past stories the Times has published applauding physician-assisted suicide. No one knows for sure what the future holds.
Having cancer doesn't make me an expert on other types of cancer and their treatments any more than owning a Ford makes me an expert on changing spark plugs in an F150 pickup. In fact, I'm sure it puts a bias in my thinking that others may not have. I can tell you this, however, I have learned two things that I think are of value to all cancer patients and their families. The first is to survive. Survive a day at a time, a week or a month, but survive. Modern medicine is a miracle that is happening right before our eyes and cancer patients benefit by it's advance everyday. The second thing I learned is to Never underestimate the power of prayer and faith. During my initial battle with Multiple Myeloma (I'm currently going through my second) I had a very low chance of survival. I received an autologous bone marrow transplant (using my own T-Cells) and was very sick for a very long time. It was during that time that I asked my God (He's mine, you'll have to get your own!) to save me. The fact that I'm writing this some 12 years later ought to count for something. Many of us reading articles like this, read them because we have cancer or know someone who does and we'd like to know that there is a light at the end of the tunnel. There is. Wear your faith on your sleeve and wake up every day ready to keep on fighting. Speaking as the one With the life threatening illness, giving up is not an option.
I've had more to day here: docknowles.com
I've had more to day here: docknowles.com
These type of stories are great and happen. When you sit in the Oncologists office and they keep bringing up the one successful case study over and over. You realize how slim your chances really are. When you have well intentioned friends telling you that Carrot juice will cure your wife's lung cancer. You want to punch them. This story is a one off come from behind feel good story. The kind Americans love. That is all it is.
2
We read this with tears in our eyes. As a small child, our daughter had a myelodysplastic syndrome followed by acute myelogenous leukemia. It was 1984, and the prognosis was grave; 19% alive at three years post diagnosis. With no matching donor for a transplant, the recommended route was just chemo, a transplant being a last-ditch effort if she had a relapse. We were serving overseas at the time, and in a foreign hospital with only the rudiments of the language, but when our daughter, not yet four, heard her name spoken by doctors discussing her situation, she turned to me with trembling chin and said, don't let anything happen to me. The whole experience was so heart-wrenching for us parents and the stress so terrible that in the lowest moments I longed for it to end however it would end, and have felt pangs of guilt ever since for even having had that thought. So, I'm saying this very quietly so as not to attract the evil eye, but now, more than thirty years later, she is an empathetic, moral, caring person, bright and beautiful, creative and highly educated with a meaningful position in a company she is proud to work for, happily married with condo and cats and the possibility of kids. Her sibling is equally gifted with a good life and oriented toward service rather than self, and we are still married, 49 years and counting. You get through that, you can get through anything. Like the Levys, we are the luckiest of the unluckiest.
23
God bless Andrew and his brave family. Its not a miracle but and Gods way of rewarding efforts of doctors, nurses and everyone who gave their heart and soul to make this happen..
This child's recovery is a miracle. Many of us in medicine and nursing see them all the time. It is God's work plain and simple.
1
You do realize, I hope, that you are running on the fumes of intermittent rewards. That's YOU, buddy. You're the one responding to intermittent stimulus.
Then there's the rest of the world. How many times do you NOT see miracles? How many lives are blighted by your unsuccessful attempts to "save" them? How many families are destroyed by the wreckage left in the wake of your work? How much money and how many precious resources are you lavishing on the few lives you're able to save? What about the rest of the world?
I've posed this question to more than one medical professional. All the answers are along the lines of, "I just do my job. I don't play God." Unfortunately, playing God is exactly what you people are doing. Comfort the sick, but otherwise leave them the hell alone and let Nature make her choices. Your professional pyrotechnics may impress your colleagues and leave your licenses intact, but a growing number of us are not so thrilled.
Then there's the rest of the world. How many times do you NOT see miracles? How many lives are blighted by your unsuccessful attempts to "save" them? How many families are destroyed by the wreckage left in the wake of your work? How much money and how many precious resources are you lavishing on the few lives you're able to save? What about the rest of the world?
I've posed this question to more than one medical professional. All the answers are along the lines of, "I just do my job. I don't play God." Unfortunately, playing God is exactly what you people are doing. Comfort the sick, but otherwise leave them the hell alone and let Nature make her choices. Your professional pyrotechnics may impress your colleagues and leave your licenses intact, but a growing number of us are not so thrilled.
2
This gives me hope that immunotherapy will be the future of cancer treatment and chemo will vanish into the annals of history. Someday.
4
Is it ok that this made me angry and happy at the same time? The thought that comes to mind is that God is like, "well if you, as his parent, aren't going to protect your child, which is your job, then I'll have to do it." The answer to the question of this article, When Do You Give Up on Treating a Child With Cancer? NEVER! It worked out this time but this is not an example for how to live, welcoming in the enemy to destroy us. I would think that by choosing not to protect your child from illness you are responsible for his death since you as the parent are responsible for his life. I urge you if you are tired or in pain DON'T GIVE UP!
1
When my mother was 88 years old, doctors discovered a melon sized tumor in her abdomen. She was flown to the nearest cancer center for emergency surgery. Afterwards the surgeon told us the bad news. The cancer had invaded her intestines, my mother would have a stoma the rest of her life, and worse, the doctor said she had not been able to remove all of the cancer. We didn't think my mother could survive the "treatment" of radiation or chemotherapy, and we took her home. Our family put our lives on hold to care for her 24 hours a day. She did appear to be dying, but one morning when I went in to check on her, she lifted her head, looked me in the eye and said, "I've decided to live." And she did. Gradually her strength returned, and for the next 5 years, she embraced her life eagerly.
She died with peace at 93. No sign of the cancer ever reappeared. The incredible force of intention trumps science.
She died with peace at 93. No sign of the cancer ever reappeared. The incredible force of intention trumps science.
7
Bravery, strength, openness, but above all Love. This story is about an amazing family. I had the privilege to work with Esther just before the horrors of what transpired in her life. I admired the incredible, cheery, supportive, intelligent, loving being of Esther and viewed her as my role model. I have the utmost respect for her and for this family. Thank you for sharing your story and I wish you all nothing but health and happiness ❤️
2
Moving article. I am happy for the family. But also struck by how stunningly privileged they are. I wonder what happens to low income families who face struggles like these.
4
I'm glad this worked out! I hope his good health continues.
The graph vs host effect is well known in transplants and it's nice to see that it played out here. Although his situation is very rare and not something that I think should be generalized upon, it does make me think that sometimes less is more when it comes to health. Had the recommendation of the team for a second transplant been undertaken the worst might have happened.
The graph vs host effect is well known in transplants and it's nice to see that it played out here. Although his situation is very rare and not something that I think should be generalized upon, it does make me think that sometimes less is more when it comes to health. Had the recommendation of the team for a second transplant been undertaken the worst might have happened.
1
It was hard reading the article as I wait and contemplate my own bone marrow transplant.
However I am 75 having lived full life but still wanting to live more
Caring for a child like Andrew made me cry. I am so happy he survived
However I am 75 having lived full life but still wanting to live more
Caring for a child like Andrew made me cry. I am so happy he survived
3
I cried. As a mother who's child's follicular lymphoma "resolved" itself without need for treatment ...i believe in miracles too. God bless them.
2
This is a very powerful soul path this family has chosen together. I'm curious about the description of their lives as 'charmed' and 'picture perfect' in contrast to the half-sentence mention of the grandmother whose family perished in the holocaust. We are no more intimately connected to anyone than our ancestors. The trauma suffered by the family is held in the system until it's acknowledged and accepted by everyone in the family. Often when difficult ancestral fates are not completely healed, a descendant will carry the burden, acting as a signal to the entire family that something is out of balance in the transgenerational knowing field. There is more to healing than working with the physical body alone. This family's powerful, conscious acceptance of death may have helped rebalance what was missing for the ancestors, and been a strong contributor to the son's healing.
Great tale with happy outcome.
We focus so much on what "breaks" in the body without studying much about how the normal systems work.
Out of our ignorance comes outcomes that violate our predictions.
Very happy that the child is better.
Steve Rinsler, MD
We focus so much on what "breaks" in the body without studying much about how the normal systems work.
Out of our ignorance comes outcomes that violate our predictions.
Very happy that the child is better.
Steve Rinsler, MD
2
Esther Levy, I so identify with your lack of feeling safe, with your need to give up hope in order to function. My husband almost died, twice, from serious cardiomyopathy. He recovered once, then almost died again from complications with one of his medications that burned his heart out even worse than the original episode. He lives on belief and will. I lived for a very long time in utter dread. Allowing myself to hope or even enjoy happy moments seemed like an open invitation for the worst to happen. Going to a psychiatrist for 6 months helped me enormously. With her guidance, I learned to look into The Void while holding myself back from the edge. It is not nor ever will be easy. Right now, though, I am better able to enjoy our family's precious present while being aware that each moment is unique and fleeting. Please take care of yourself and find the right person to talk to.
1
As a pediatrician whose wife died of a horrible similar rare cancer I find these lay articles describing "miracles" to be very confusing. This is a child who received a bone marrow transplant and received enough immunocompetent cells to produce a remission? The fact that makes it newsworthy is they were offered a second bone marrow transplant of cord cells but declined it? I have no idea what this story means, what lessons there are to be taken from it, and exactly how this qualifies as a general interest story.
In general, I think these "miracle" stories should be left to the medical journals. The public takes the lesson from these stories that oncologists don't know what they're doing, "miracles" are possible if you pray enough, and there are endless resources to provide endless care. The truth is this is a unique story of an extremely rare cancer, dealt with by a wonderful dedicated family that seemed to have adequate financial resources for every decision.
Very very few people will find themselves in this situation. I don't think this story is analogous to anyone else's situation-they are certainly not similar enough to what we went through to draw any conclusions-and so I would recommend no one, especially non-oncologists, try to draw lessons from this story. I am happy for Andrew and I wish him and his family the best.
In general, I think these "miracle" stories should be left to the medical journals. The public takes the lesson from these stories that oncologists don't know what they're doing, "miracles" are possible if you pray enough, and there are endless resources to provide endless care. The truth is this is a unique story of an extremely rare cancer, dealt with by a wonderful dedicated family that seemed to have adequate financial resources for every decision.
Very very few people will find themselves in this situation. I don't think this story is analogous to anyone else's situation-they are certainly not similar enough to what we went through to draw any conclusions-and so I would recommend no one, especially non-oncologists, try to draw lessons from this story. I am happy for Andrew and I wish him and his family the best.
6
Imagine what the outcome would have been if the parents were not wealthy.
1
Every family passes through the painful challenges in life differently. For this family, 6 months of living in a hospital was enough and it was time to let go and embrace life again, no one can judge that. Others may fight for the life of their children for years, and that should not be judged either. Each family follows their own path lives their own life. When difficult challenges face us in life, including those that shine a light on our mortality, the question may not be "why me?", but rather, "why not me?" No on is immune to the business of real living. Knowing this may make it a little bit easier.
1
This story has an amazing and wonderful surprise ending. I wish these dear people ongoing health, happiness and gratitude. However, my most important take-away from this story is how generous and loving the gift of quality of life can be. To be brave and put the quality of your child's remaining time before your own needs to keep him alive, no matter what - that is true love and compassion. Oh, that more doctors told the truth about how devastating continued cancer treatment CAN be. People sometimes donate their bodies to medical science BEFORE their deaths. We need more people to be courageous when making end-of-life decisions for their loved ones.
2
I am so happy for this family. And thank you, NY TIMES, for publishing this. It gives me hope in this world!
Esther is truly a common mother with an uncommon steadfastness. What she has done for her son all through those unbearable situations as a mom really beggars description. Now Andrew has taken a new birth & Wills's touch is the divine touch of Jesus himself. It's quite heart-rendering when I starte reading the news & there is a moment of ineffable joy towards the end of their journey in the path of almost never-ending pain. I salute Mrs. Esther. She has set an example. So those of us who don't realize the importance of a mother should go through this news. A mother is an ever-glowing star in everyone's life. She is always ready to take care of her son's & daughters. My mom feels as mother Esther has undergone pain & pleasure. You all mothers are everything in our will & woe.
1
My first thought is What does Andrew think of all of his experiences, doctors, needles, hospital rooms and surgery? Having a bone marrow transplant is no picnic, I understand. And that his brother was able to help launch Andrew into a cure zone is just wonderful.
On the point of a doctor's prognosis for a terminally ill patient; statistics. Remember that the late great Dr. Steven Jay Gould stopped his doctor from misconstruing survival statistics for stomach cancer. There was no magical medical events as in the case of Andrew, but Dr. Gould lived with cancer for the maximum amount of time that the statistics allowed; many years instead of a few previously predicted months at best.
As one whose family member suffers with a terminal cancer with an initial prognosis of 3 months to live but within a year of that diagnosis had a reversal, I say, nothing in the media, films, or television prepare a person for what will happen to her family when a family member enters the cancer zone.
This journalism presents a microcosm of a family with financial, spiritual, and emotional means when presented with a disease that intends to take their child.
Lastly, a poetry book called "SOME LAMB" written by Sam Rice, the late husband of Anne Rice, who was a poet, writer, and English Instructor which relates his experience of his very young daughter's suffering with terminal leukemia. It is almost unbearable to read of her suffering whereas this article helps me understand it.
On the point of a doctor's prognosis for a terminally ill patient; statistics. Remember that the late great Dr. Steven Jay Gould stopped his doctor from misconstruing survival statistics for stomach cancer. There was no magical medical events as in the case of Andrew, but Dr. Gould lived with cancer for the maximum amount of time that the statistics allowed; many years instead of a few previously predicted months at best.
As one whose family member suffers with a terminal cancer with an initial prognosis of 3 months to live but within a year of that diagnosis had a reversal, I say, nothing in the media, films, or television prepare a person for what will happen to her family when a family member enters the cancer zone.
This journalism presents a microcosm of a family with financial, spiritual, and emotional means when presented with a disease that intends to take their child.
Lastly, a poetry book called "SOME LAMB" written by Sam Rice, the late husband of Anne Rice, who was a poet, writer, and English Instructor which relates his experience of his very young daughter's suffering with terminal leukemia. It is almost unbearable to read of her suffering whereas this article helps me understand it.
What an amazing story. Miracles do exist! All the best to little Andrew and his family!
1
Dan & Esther, I am blown away by your love for your family, fortitude & strength.
For the future, I wish you the very best.
For the future, I wish you the very best.
1
Glad to read this story. Best wishes for a happy life.
1
Thank goodness the parents are loaded. This is Architectural Digest at it's saddest. I wish I had a pool for my niece but I'm not poor enough or rich enough.
3
The body is a garden. A dynamic, chaotic, biological amalgam. And like all gardens it is a riot of organized life. It can be invaded by outside organisms. It can suffer its rots, its decays. And so the medical community has the job of "gardeners." Sometimes, as gardeners, doctors forget that it is the judicious application of "pesticides" that works best. And sometimes its benign neglect that does, too. But sometimes, probably more often than we like to think, it is the programmed, data-driven unempathetic, application of aggressive treatment than ends up aggrieving the garden more than the original assault. It's a fine distinction I'll grant you, which is why the field of Medicine is more Art than Science; as is all gardening....would that the Medical Field, as a whole, understand this better that it does....
I wish the parents well with their, and their progeny's, future.
John~
American Net'Zen
I wish the parents well with their, and their progeny's, future.
John~
American Net'Zen
2
The Human Immune System is the immunological equivalent of the Incredible Hulk. Poke it with a stick just enough and you will make it angry. Apparently this works not just for macrophages adapting to TB but also for T cells. This also highlights the patient relationship in how it can make or break someone's life.
1
Great story that will give lots of false hope to many and probably convince many to make wrong choices. I was also struck that they "posted their decsions on line".... Is nothing private anymore?!
I am a six-year ovarian cancer patient and can attest to the impact of education, stamina and persistence in getting quality health care. Following two major surgeries, a grueling 17-day hospital stay, and two months of recovery at home, my insurance denied my doctor's request (three times) for a maintence drug to hold any microscopic cells at bay.
I wrote a letter to the Appeals Board of my insurance company and got the decision overturned and began treatment the next day. Not everyone has the capacity to write a persuasive letter and the physical and emotional stamina to make it happen. No one should have to go through that for health care.
My next career will be a patient advocate. And a heartfelt THANK YOU to all the oncologists and their support staff who do this hard, hard work everyday.
Best wishes to the Levy family. God bless you.
I wrote a letter to the Appeals Board of my insurance company and got the decision overturned and began treatment the next day. Not everyone has the capacity to write a persuasive letter and the physical and emotional stamina to make it happen. No one should have to go through that for health care.
My next career will be a patient advocate. And a heartfelt THANK YOU to all the oncologists and their support staff who do this hard, hard work everyday.
Best wishes to the Levy family. God bless you.
3
This beautifully written article made my pulse race with joy when I learned that Andrew would live!! I pray for a long life of good health for Andrew, his wonderful parents and his brother & sister. May the family know much happiness from now on. As we say in Hebrew, Kol A Chavod!!!
Thanks for sharing. The loving instincts of a mother were all this child needed. It seems like sometimes, at least, science is overrated and nature underrated.
A great story reminding us of the power of unconditional love and making the most of the time we have with what matters most: Family
Tempt fate, and live every day as if it is your last. :-)
The saddest thing in my own different, but similarly devastating, circumstances was that even when I grew to truly accept the situation (a child with severe, lifelong disability), I remained permanently broken in my spirit in some ways. Even my most blissful days, now years after the diagnosis, have a bittersweet tinge in my heart, one that I just don't expect to ever go away.
You just change from the person you used to be. In some ways, maybe you're better, because you never will fail to appreciate the ordinary and mundane of life again. Ever. But in many ways, the sadness breaks you in a way that leaves a terrible permanent scar.
Esther, I hope you and Dan someday can defy what I have said and find the peace of not looking back over your shoulder.
You just change from the person you used to be. In some ways, maybe you're better, because you never will fail to appreciate the ordinary and mundane of life again. Ever. But in many ways, the sadness breaks you in a way that leaves a terrible permanent scar.
Esther, I hope you and Dan someday can defy what I have said and find the peace of not looking back over your shoulder.
3
Wonderful that this child's horrible leukemia appears to have been cured. When I was in residency, it was just heartbreaking to see infants with cancers with terrible prognoses undergo months of living hell of chemo, only to be made into nursery school aged children who could now understand that they were dying, watching their mother hold the replacement baby in her lap as they lay dying. I swore I would never put my child through such treatment, if the odds were so bad. And yet, the only way to discover better treatment protocols is for children with poor prognoses to undergo clinical trials of new treatment protocols. Still, I do think that if more parents knew how horrible the treatments were, with so little chance of cure, they would just take their child home to die.
Very brave and strong parents in the worst of all situations. Luck, a miracle... how happy I am that your son is with you and your family is whole.
1
Terrific science reporting with heart. Wonderful. Bravissimo to the family and Andrew and the doctors for being so creative and so brave.
This is one very lucky little boy.
I can't help but think on Esther's thought about the teleological nature of parentlng. So many parents do not have the opportunity to rear their children to become an adult, to grow up to be a wonderful human being. Children die every day. The difference here is that Andrew's was a death that was anticipated, in a future in which she felt she would be cheated of the chance to raise her child to adulthood. I am SO glad that did not come to pass, especially as I have been watching my friend struggle through this past ten months since the sudden death of her only son.
Since we never know what any day will bring, perhaps it is best to raise every child as if they will become adults eventually, and as if they will all be wonderful human beings - because they deserve to be.
I can't help but think on Esther's thought about the teleological nature of parentlng. So many parents do not have the opportunity to rear their children to become an adult, to grow up to be a wonderful human being. Children die every day. The difference here is that Andrew's was a death that was anticipated, in a future in which she felt she would be cheated of the chance to raise her child to adulthood. I am SO glad that did not come to pass, especially as I have been watching my friend struggle through this past ten months since the sudden death of her only son.
Since we never know what any day will bring, perhaps it is best to raise every child as if they will become adults eventually, and as if they will all be wonderful human beings - because they deserve to be.
I would hypothesize that these doctors' "guesses" on why Andrew recovered are totally wrong.
1
This reminds me of what child expert Brazelton said in one of his books about balancing medical treatment with other human priorities...he was speaking of letting immune-compromised children have visits from their siblings, in spite of the risks. He said that seeing the joy and relief of reunited siblings, who'd been kept separate to protect the ill child, convinced him to take a more balanced approach to treatment protocols. I can't remember precisely what his phrase was-- but the moment he witnessed and the way he described his epiphany resonated so deeply that it returned as I read this story. In so many aspects of life, you have to trust your instincts against "common sense" or the advice of the most well meaning friends and supporters. Please God this miracle will last for the Levy family, and for others facing similar pain.
2
I applaud so much wisdom and courage. More patients and family of patients should learn how to say no to endless treatment and no to just hope.
Suffering is still regarded as a virtue, something that belongs to life and that we are supposed to endure as a biblical pledge. Children too should have the right to euthanasia, the right to die with dignity.
Here is the story of a true mother and true father and the strongest love possible.
Suffering is still regarded as a virtue, something that belongs to life and that we are supposed to endure as a biblical pledge. Children too should have the right to euthanasia, the right to die with dignity.
Here is the story of a true mother and true father and the strongest love possible.
1
Cancer therapy is a balancing act, the first trandplant saved their boy, and rejecting a second trnasplant, saced their boy. It still came down to the science, art, and intuition on how many cells to kill, just enough, to let him live. With targeted drugs, its still the same, hopefully with better efficacy and lower toxicity. still, all about killing those cancer cells while sparimg the rest of the person.
People here commenting on how it was Andrews parents money that saved his life are missing the point.
If it was his own immune system that eradicated cancer, it has huge implications for how we treat cancer. Not only did the immune system destroy cancer it seems to have done so in remarkably short span of time. Less suffering, less cost and better prognosis. That is what the story was trying to get at.
Immunotherapy cancer reaserch is just developing, and I am looking forward to it!
Good luck to this family! To Andrew and his little white blood cell warriors, may the force be with you!
If it was his own immune system that eradicated cancer, it has huge implications for how we treat cancer. Not only did the immune system destroy cancer it seems to have done so in remarkably short span of time. Less suffering, less cost and better prognosis. That is what the story was trying to get at.
Immunotherapy cancer reaserch is just developing, and I am looking forward to it!
Good luck to this family! To Andrew and his little white blood cell warriors, may the force be with you!
4
Wonder what ANDREW would say about this? Would he really have been so welcoming to go through painful treatments - think of himself as "so brave?" I WAS one of those kids in the hospital, and frankly I would have been just as happy if I HAD died, rather than go through one more day. Not to mention the endless, endless tests - for YEARS after. But, since I was nothing more than a THING, an object to satisfy my "Mothers" "Love" I had to go through it - not to mention the endless experiments.
One things for certain - never again. I'll never go into a hospital again - and I'll never have "that woman" take "care" of me, ever, again.
One things for certain - never again. I'll never go into a hospital again - and I'll never have "that woman" take "care" of me, ever, again.
1
It is a well known fact that doctors, when diagnosed with cancer themselves, often refuse any heavy treatment.
1
I understand why they don't feel they're out of the woods yet, though of course I hope they are.
This story clearly illustrates so very many reasons why we refer to the "practice" of medicine. It is always practice, and not perfection. Even in the best of circumstances, which this certainly was not, what works for one patient may not work for another.
The resiliency of the human spirit and the human body that houses it simply cannot ever be truly understood. We must all remember that when it is someone else's cancer (or other disease) the disease *and* the treatment protocol ultimately belong to them. If the ill one is a child, decisions belong with the parent(s). None of us should question someone else's path. We may think it incorrect, stupid, irrational, impossible - but that is not for us to decide or even for us to comment.
Miracles and moments of grace can and do happen. Not to everyone, but perhaps to you or your loved one. Who is to know and who is to say? As many other comments have pointed out - we arrive alive and we exit dead. What happens in between is up to us.
The resiliency of the human spirit and the human body that houses it simply cannot ever be truly understood. We must all remember that when it is someone else's cancer (or other disease) the disease *and* the treatment protocol ultimately belong to them. If the ill one is a child, decisions belong with the parent(s). None of us should question someone else's path. We may think it incorrect, stupid, irrational, impossible - but that is not for us to decide or even for us to comment.
Miracles and moments of grace can and do happen. Not to everyone, but perhaps to you or your loved one. Who is to know and who is to say? As many other comments have pointed out - we arrive alive and we exit dead. What happens in between is up to us.
Beautiful, touching article about two stories. One story tells how a family faced the tremendous choice between quality of life for the whole family and prolonged survival of one of its members, and had the courage to stand by their choice. The other story is about the almost miraculous recovery of their child. The second thing isn't the result of the first though. The family didn't chose to reject chemo to let the body "heal itself", and the body of the child didn't heal itself: the very aggressive medical intervention that is a marrow transplant cured the child, and it just took longer than expected. By reading many of the comments, it seems that people are taking from this story that chemotherapy and other aggressive anti-cancer treatments are the evil, which I think is a thought nearly as dangerous as the anti-vaccine movement.
1
I hope that Andrew grows up to be even stronger and healthier with time. I can certainly relate with the ups and downs that parents and a child need to go through, as well as the toll that it can have on a family. But, just like you as parents we've never given up and kids are amazing fighters. My son has been through many challenges in his life and now is fighting Leukemia as well. Esther and Dan - thought I would let you see my son's fight. http://highschoolsports.nj.com/news/article/1989046250604012078/watch-co...
Thanks for sharing your story and giving other parents the hope and belief that their children can beat this disease with love, hope and support from family and friends.
Be strong Andrew! - Brian
Thanks for sharing your story and giving other parents the hope and belief that their children can beat this disease with love, hope and support from family and friends.
Be strong Andrew! - Brian
1
following Andrew's Facebook page these past years has been a passage of desperation, love, and faith as much in Esther Dan Wills and Lea as the medical journey. These folks are the best of us, and feeling helpless as this unfolded, now simply awed by them. I could not read their news these last few months, prayers seemed to feed an abyss. Thank you so much for writing this. These are true hearts all.
2
But that's the place we all live in whether we know it or not. The sooner we all accept the certain reality of Death - we really DO begin to live.
1
I'm not in the least surprised that the doctors were stunned when they heard of the family's decision not to pursue further treatment, and that they emphatically didn't want to give up on the child. I doubt that they had ever before encountered such selfish, uncaring parents. I don't know how any parent could simply give up on a child when, so far as they knew, there was indeed a chance that child would live, even if slim.
I have to say, the behavior of these parents strikes me as little short of child abuse of the worst kind. They -- or at least their child -- happened to luck out and, miraculously, have the child survive -- but that has exactly zero to do with their own egregious acts.
I have to say, the behavior of these parents strikes me as little short of child abuse of the worst kind. They -- or at least their child -- happened to luck out and, miraculously, have the child survive -- but that has exactly zero to do with their own egregious acts.
2
What a heart warming article! I want to thank the Levy family for sharing their story with us. As a physician I deal with death in some manner or another on daily basis. I have encountered a lot of courageous patients and families. Cancer treatment has come a long way since I started practicing almost 20 years ago. Some cancers are now treated akin to chronic condition, (i.e. breast cancer). However, I feel each patient and family should make the decision to continue or to cease treatment according to their own personal choice, with help of their oncologist and PCP. There are so many newer treatments now available for many cancers. One should evaluate the risk vs. the benefit of the treatment, never forgetting the side effects. It appears as though the Levy family's decision regarding Andrew's treatment was the right one. I wish only the best of health to Andrew.
We never give up, but we can offer that course to the child at seven. Brittany McIntosh 6 then 7, was diagnosed with AML-M10 in October. Her mother had worked for us in Barbados for a decade. We learned Wednesday. We flew her and her parents to CHOPS in Philadelphia on Friday. None too soon. Garret Brodeur MD took the patient. Radical steps saved her that weekend. Two complex efforts ending in March failed. We offered a third at St. Jude's. Brittany declined. She knew. She died at home in Edgcomb, St. Joseph a week later. She smiled. We read Snow Goose by Paul Gallico and Make Way for Ducklings calling the ducks by her siblings names. She did not want more. She accepted her fate.
2
Imagine this article written about poor or underrepresented minority parents. Instead of applauding the parents' wishes to withdraw treatment, the article would have involved the removal of the child from their custody. Every parent has the same rights as the Levys.
1
Murphy's paradox: Anythimg that can go wrong, will. Even with Murphy"s law.
This is a harrowing story, with a miraculous ending. So far, anyway. Most families in a similar situation don't get the miracle, just the heartbreak.
1
i applaud this family's decision to discontinue treatment and spend quality time with their son. it must have taken tremendous courage,
As for being unlucky I beg to differ.
They are extraordinarily lucky -- their son survived, which is miraculous, and they have a comfortable lifestyle which alleviates the stresses most others in this situation would have to deal with. For anyone who has lost a loved one, this story reads like a fairy tale.
As for being unlucky I beg to differ.
They are extraordinarily lucky -- their son survived, which is miraculous, and they have a comfortable lifestyle which alleviates the stresses most others in this situation would have to deal with. For anyone who has lost a loved one, this story reads like a fairy tale.
1
Good that the article went further into analyzing what may have happened, rather than leaving everyone to think that it could only be a "miracle." That would've been the lazy way to end the piece. Fortunately, it took on more interesting turns as the doctors began to consider what could have been going on in the child's body. We humans are not as dumb as some think we are.
3
This article took me back to 2014. Our 14 year old son (Jacob) Adopted from the Philippines less than 2 years before was diagnosed with Acute Myelocytic Leukemia. Reading about Esther and Dan ...and Andrew was like reading about Marshall, Lorrie and ...Jacob. The couch in the hospital, keeping the family whole its the same story. We captured our story in a blog called empty the orphanage - it was supposed to be about the adoption process but we kept writing after his diagnosis.
Esther and Dan I am so happy to hear that Andrew survives - and that he's stumping everyone - Thats a God thing. Heal, rest, enjoy every moment with that dear one. We lost our Jacob on 3 Jan of 2015. I am so happy Andrew is not lost. I hate cancer.
Esther and Dan I am so happy to hear that Andrew survives - and that he's stumping everyone - Thats a God thing. Heal, rest, enjoy every moment with that dear one. We lost our Jacob on 3 Jan of 2015. I am so happy Andrew is not lost. I hate cancer.
11
Please pay attention to Mrs. Levy's comments about isolation. I commend the school for creating lists for meals, and the other parents for their support. You really have no idea how much such actions mean.
Our family has a similar experience. I do not understand how people become so immersed in their own lives that they have no time for anyone. I mean stopping by the hospital, bringing a book or sending a card. A hug. Talking to someone not wearing a hospital ID. Not one person in what we considered a close circle sent a gift card for a restaurant or visited. Our pastor never came, despite requests.
My favorite phrase was, "Sorry we didn't visit. We just don't like hospitals." Even the pastor used it. We don't like them either. It wasn't a vacation. Doesn't being an adult mean being old enough to do the right thing, even if one doesn't like it?
It is hard to know what to do. And, it is harder when the path is walked alone. If you know someone with a major illness, take the time to be there. Make a meal, or bring a frozen lasagna or gift card. Visit and send a card. You tell someone they are worth the effort. We felt punished and worthless. It seemed God didn't care, and neither did "friends." though the social workers told us it is a frequent side effect. People back away because they are afraid they will be inconvenienced by requests for help. People no longer desire to be asked for 3 loaves of bread at midnight. They want to remain in bed.
Our family has a similar experience. I do not understand how people become so immersed in their own lives that they have no time for anyone. I mean stopping by the hospital, bringing a book or sending a card. A hug. Talking to someone not wearing a hospital ID. Not one person in what we considered a close circle sent a gift card for a restaurant or visited. Our pastor never came, despite requests.
My favorite phrase was, "Sorry we didn't visit. We just don't like hospitals." Even the pastor used it. We don't like them either. It wasn't a vacation. Doesn't being an adult mean being old enough to do the right thing, even if one doesn't like it?
It is hard to know what to do. And, it is harder when the path is walked alone. If you know someone with a major illness, take the time to be there. Make a meal, or bring a frozen lasagna or gift card. Visit and send a card. You tell someone they are worth the effort. We felt punished and worthless. It seemed God didn't care, and neither did "friends." though the social workers told us it is a frequent side effect. People back away because they are afraid they will be inconvenienced by requests for help. People no longer desire to be asked for 3 loaves of bread at midnight. They want to remain in bed.
18
I can't help but wonder if there is a technique in here somewhere with a better chance of success...
Health is not just physical.
4
All praise and compassion for the parents notwithstanding, this story presents a very complicated ethical dilemma. The parents' decision not to seek further treatment to prolong their son's life resulted in an extremely ironic (and happy) ending for the child and the family, and clearly not the outcome the family expected. But one wonders what the psychological impact on the parents had been if the more likely outcome had ensued, and the child had died? Would the parents have been left with the nagging guilt of always wondering if they should have followed medical advice and pursued that second round of treatment? Additionally, there is the question of what the child might have wanted for himself, had he been old enough to choose. Finally, there is the question of whose suffering was at issue here: the mother's? The child's? The family's? Would Andrew's suffering in receiving the second round of treatment been as great as the suffering he would have experienced in the process of dying (had he died)? With the far more probable ending, this would have been a far more different story, and the reader responses probably far more different, too.
1
To be blunt, this article suggests to me that, at least in respect to cancer, the medical field really doesn't know much of anything.
3
Some medical professionals may know almost as Mr Mutchler.
1
From the article: "She had always felt in control of her fate, but now she believes this to be a fiction."
Far too many people assume they're in control of their fates, simply because their efforts have worked fine thus far. This leads to trouble when they do inevitably have major problems... and whenever they extrapolate their good luck to others (n.b: I don't mean to say that the Levys are doing that).
Thus we have the popular meme that sufferers simply made "bad choices," so we good-choice people will be spared and need neither feel compassion nor pay taxes to fund help for them.
Far too many people assume they're in control of their fates, simply because their efforts have worked fine thus far. This leads to trouble when they do inevitably have major problems... and whenever they extrapolate their good luck to others (n.b: I don't mean to say that the Levys are doing that).
Thus we have the popular meme that sufferers simply made "bad choices," so we good-choice people will be spared and need neither feel compassion nor pay taxes to fund help for them.
41
We are all in this together. In November 1974 I was operated for melanoma. An 18 inch cut followed by BCG for two years. The lesion was 3 plus in the Temple scale, large and bleeding in my bath towel, left scapula. 13 left armpit lymph nodes excised. Negative. They gave me 80% then 50/50 for a year. In May 1975 I was operated for parotid cancer, right side. That was nothing. Just depressing. Squamous lung took my youngest brother, I've had squamous removed twice and basil. An acoustic neuroma - brain tumor - arrived January 1998. Benign. 2,000 RAD FSR to control. Intra canicular Vestibular Schwannoma, 6 mm, left side. Deaf.
We dodge the bullets and pray. We're not going to get out of here alive. We live every day. Married 56 years.
Thrilling and moving story of two wonderful parents and 3 great kids.
They will value life. They are part of the solution.
Be well.
We dodge the bullets and pray. We're not going to get out of here alive. We live every day. Married 56 years.
Thrilling and moving story of two wonderful parents and 3 great kids.
They will value life. They are part of the solution.
Be well.
102
Although I didn't quite understand the technicalities of your battles, (although I've had quadruple by-pass surgery and fairly knowledgable about medicine for a layman), what I did get was your message.Your letter was unbelievably fantastic.
Timing is everything...God Bless the nurses, doctors, social workers and medical staff... And most of all bless Andrew and his parents... We can only hope that enough has been learned to be used in treatment of other children with cancer!
34
25 year ago, my father died of acute leukemia about 1 month after he was diagnosed. He begged us not to treat him. We asked the oncologist what his chances of survival were. The oncologist said it was the wrong question. He said, " Even if it was just 1%, wouldn't you want him to have the 1%." Of course we said "yes". In the intervening days his immune system was destroyed. He was put into a chemically induced coma to prevent him from ripping the tubes out of his body. He developed lesions over his body from skin infections normally controlled by the body's immune system. Eventually ally he died from a nosocomial infection. Did we make the right choice? I still don't know. For a child the choices would have been more horrific.
68
This is a very tough situation and I feel great empathy for this son. But if I had a family member with a 1% chance and who "begged us not to treat him", I would have respected that. I think being allowed to make one's own choices and to die with dignity and on one's own terms is every person's right.
I applaud this man's courage to share his family's story, though.
I applaud this man's courage to share his family's story, though.
3
It is a fascinating story. I am curious about the cost of these special treatments the child got. and how available they would be to a family of non-Stanford graduates without money. I suspect I will be called a grump for saying it, but I would wish that all children had the obviously exquisite care that little Andrew got. I commend the parents on letting go. To be healthy, it is something we should all do, every single day.
153
I wish that all children had the obviously exquisite family that Andrew has.
1
Same availability... In the UK, Canada or Australia. But your country does not have enough money for universal health care. Unlucky.
2
Most children's hospitals have foundations and funds to provide care for children. It's so important to contribute, even a little, to these funds so that all children can be treated. Often when we make decisions about charitable giving, those funds may not immediately spring to mind, but I hope those who read this story will come to realize how important this kind of giving is.
If we gave up using the language of war in the treatment of cancer, we could drop the term "giving up." If instead we treated cancer and at the same time the patient (parents) set out in the beginning what there goals were, decisions later in the course of treatment could be made with clearer thinking and less emotional disturbance. Medical treatment is not a war.
52
I could not agree more. The "war" approach is wrong from so many angles. As is the related idea of "eradicating cancer", which we will not as long as we are humans.
2
I'm trying not to put words in your mouth. "Negotiated settlement with the cancer?"
I could not agree more about dropping the battle rhetoric about cancer. Some indeed want to "fight" and that is the right choice for them; others believe that quality of time left is infinitely more important than the possibility - certainly no guarantee - of a little more time with orders of magnitude more suffering. There is no less honor and courage in that.
What matters is being able to clearly weigh the specifics of their illness, proposed treatments, likely outcomes, and their personal values systems in order to come up with a decision that feels right to them.
So can we please stop talking about "losing their battle with cancer" in obituaries and news stories? We don't talk about shooting victims losing battles with bullets.
What matters is being able to clearly weigh the specifics of their illness, proposed treatments, likely outcomes, and their personal values systems in order to come up with a decision that feels right to them.
So can we please stop talking about "losing their battle with cancer" in obituaries and news stories? We don't talk about shooting victims losing battles with bullets.
Many commenters seem to be missing what has been hypothesized here in Andrew's unexpected survival. It was not his parents' wealth and therefore access to best treatment that enabled their little boy to live. It was the likelihood of an undiagnosed infection--which surely would have been aggressively treated had the doctors discovered it--that stimulated Andrew's new immune system.
It was miraculous, perhaps, that Andrew was strong enough to survive both the infection and the cancer, until one vanquished the other.
One of the lessons here is that even the best medical team can miss something, and sometimes missing it is the best thing that could possibly happen.
I'm sure that for all the cases in which poorer people died because they couldn't afford good medical care, some poorer people survived because they were not subjected to state-of-the-art care which can be incredibly, though scientifically, brutal.
Every cancer patient is an individual whose disease has unique individual characteristics. Andrew's case opens up intriguing pathways for treatment. He remains a unique little boy who did experience what there is no shame in calling a miracle.
It was miraculous, perhaps, that Andrew was strong enough to survive both the infection and the cancer, until one vanquished the other.
One of the lessons here is that even the best medical team can miss something, and sometimes missing it is the best thing that could possibly happen.
I'm sure that for all the cases in which poorer people died because they couldn't afford good medical care, some poorer people survived because they were not subjected to state-of-the-art care which can be incredibly, though scientifically, brutal.
Every cancer patient is an individual whose disease has unique individual characteristics. Andrew's case opens up intriguing pathways for treatment. He remains a unique little boy who did experience what there is no shame in calling a miracle.
89
Wealth does not only pay for medical treatment. Wealth also means one parent can spend full time with a sick child. Wealth buys homes suited to your needs at every step. Wealth means you can choose to keep the family together as your first priority. Poor families have none of these choices.
3
Life is about living, not about fighting to live longer regardless of any other costs. I admire the Levys' courage in considering the needs and desires of the entire family as they made the decision about Andrew's treatment when his cancer returned. I also admire them for placing such a high value on the time they had with him as a family, living under circumstances as normal as they can possibly be when you have a terminally ill child.
And there's also the fact that their decision may have actually saved his life.
And there's also the fact that their decision may have actually saved his life.
54
I admire them for not putting Andrew through anymore treatment and therapy than he was already getting to combat the cancer / infection. His Mother let go to protect the entire family from this nightmare at just the right time. Reading the words of his sister that she did not like it that Andrew is going to die reminded me so much of the way my grandchildren talk about one another, not liking if one is excluded from anything the rest of them experience. I am so glad for this family that things turned out the way they did. I hope the Levy family can resume life with confidence in the future.
So happy to see this story. And to see a number of physicians commenting here, who support the parents. In my experience the medical world often can not see outside of the box when one treatment plan is not working. And so often the patient loses all freedom of choice in his or her care. I applaud the courage of these parents to do what felt right for their family and their child. May their child continue on his wellness journey for many months and years to come.
38
In NYS at the University of Rochester Medical Center the is the Strong Memorial Hospital and the Wilmot Cancer Center . This hospital is very highly regarded for the treatment and cure of many cancers . Our child proves that the actual miracle of her recovery and that of the sweet boy in the story is only from the beauty and real truth of science . Hope truly springs eternal in this environment of love , courage and masterly scientific know how.
1
One of the most beautiful stories I've read in a long time.
30
Let me be blunt: this child is alive because his parents are wealthy. This is at once an inspiring and cautionary tale.
75
What is your opinion based on?
2
Mr. Blunt , many have survived cancer rich and poor . Yes this country still does not get it about the ACS (Obamacare) heard of it ? Do you know many now can afford the treatment for cancer and MD .
1
You seem to have missed the whole point. Wealth didn't save them. Giving up, at the exact moment they did, is what saved his life. It was a combination of great medical care, giving up and an infection.
No one is guaranteed even one single day. We all needs to receive the gift of life, no matter how fleeting with joy. It is sad to read that these parents did not want to enjoy what precious time they had with Andrew. As Jews they should have understood that the short time on earth is followed by Eternity, when we are all joined back together. King David made this clear in 2 Samuel 12 verse 23: "But now he is dead. Why should I fast? Can I bring him back again? I shall go to him, but he will not return to me.” We all can be assured of an Eternity because of the finished work of LORD JESUS. HE made that clear in the fourteenth book of John: "I AM the WAY, the TRUTH and the LIFE. No one comes to the FATHER except through me." If anyone is struggling with the cares of the world, just call on JESUS. HE will walk you through any trial or tribulation and give you peace. "Peace I leave with you; MY peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid," John 14:27. Just ask JESUS and HE will come to you and bring you peace: "Behold, I stand at the door and knock. If anyone hears MY voice and opens the door, I will come in to him and eat with him, and he with ME," Revelation 3:20. Allow JESUS in and HE will bring you peace and free you from the fear of the grave. Shalom.
16
Who are you - or anyone - to tell someone with a critically ill child to "enjoy their child." Did you miss that their child was often screaming in pain? Did you mIs the grief of their other children? Did you miss that they decided to discontinue treatment to allow their child to have a chance to enjoy as best he could what time he had left? What do you know about their religious beliefs? Nothing. And that is not what this essay is about. Throwing scripture at Soneone navigating a devastating illness is beyond ignorant.
2
Exactly the type of comment I was hoping not to read. This family's non Christian faith, obviously expressed in a personal way, served them just fine. Thankfully there is NOT just one way but many, and how wonderful that a completely unexpected and serendipitous way opened up for these admirable people. All the best to them.
1
What is sad is that you think you have the right to judge these parents. Here's a quote for you. "And why beholdest thou the mote that is in thy brother's eye, but considerest not the beam that is in thine own eye? "
1
What hell, I ache for that family. I am furious that the doctors argued with the family's decision regarding quality over quantity. Those doctors need to read "Being Mortal." In fact, everyone should, the status quo is mistaken. Andrew proved it.
Please revisit this in nine months and in two years. This family is in my hearts, along with everyone who has to face cancer. It hurts so much.
Please revisit this in nine months and in two years. This family is in my hearts, along with everyone who has to face cancer. It hurts so much.
31
A recent AARP article on cancer patients briefly chronicled a man who has/had pancreatic cancer. He was given, it turns out, a placebo medication in a drug trial, and he so believed in it, he became cancer free. Spontaneous shrinkage and disappearance of cancer cells does happen, however rare. Let's hope Andrew, and the elderly man, have many years ahead of them.
20
As an agnostic, I particularly appreciated that the parents rejected the notion that their son's fate was some sort of a divine plan. The scientific explanation that is offered here is much more satisfying (and useful to the human race) than attributing either his illness or his recovery to God or a miracle.
78
Never give up! Miracles happen.
14
Way to go Andrew! Godspeed.
14
Sending joy to this family.
7
Thank you so much for sharing your story. What a well written piece of a part of life that is so often not heard or understood. Xxoo to the entire family.
4
I can barely read the second half of the article after crying through the first half. I'm glad the kids survived but the author set me up. I have 3 kids and I would never never ever ever ever ever ever give up hope on their survival, whether I could afford a 10 million.dollar house or not. they got way lucky!
16
Your comment is unkind, I think. Their "giving up hope" had nothing to do with their wealth or their house. It had to do with their making an agonizing decision about not prolonging their son's and other children's suffering. It takes a special courage to make that kind of choice. And "way lucky" probably isn't the most accurate description of the horrible pain they have experienced.
A grandson was recently diagnosed with melanoma close to his eye, probably, genetic in origin. The dread set in as we waited to see what would happen. It had some of the characteristics of a late stage of development. Two operations followed one to remove the growth and one to repair its effects. The report a week after was that the melanoma hadn't spread.
A second one has since been discovered on his back. This illness has altered our family dynamics and our complacent view of our well being. This powerful report gives us a perspective that is useful.
A second one has since been discovered on his back. This illness has altered our family dynamics and our complacent view of our well being. This powerful report gives us a perspective that is useful.
41
A beautifully written very moving narrative. It wasn't until I was finished reading that I was aware I had tears on my cheeks.
13
These parents, maybe without knowing it on the surface, used the love only a parent can to 'let go, and let God.' In short, a parent's love saved a child in the only way they knew how... By loving him. There is just not enough light out there anymore, please follow up to us- the 1000's of other parents sending love and good thoughts to this wonderful family.
12
I so admire these parents for making a decision to discontinue treatment, thus minimizing the suffering. That it turned out to allow him to live is beside the point. These are good people who deserve our support. And love to them, both parents and all the children.
42
The family's bravery in resolving on no further treatment has not only resulted in their son's survival, but has also made an important contribution to the treatment protocol for this type of cancer, which will hopefully lead to a better outcome for other patients.
41
What a strong family. I truly admire those decision and hope that I would have that clarity of thought .This is a remarkable story about the most horrid of cancers. Blood cancer is so sneaky and hard to treat and all the subtypes and classes and genetics and curl genetics make it even more challenging . I know, my husband has AML and is in remission. But like This family our lives are never the same , making plans to far in the future is scary. Do we plan a trip for next year? What if??
3
God works in mysterious ways.
6
As does the human immune response.
What a difference economic class makes in this kind of tragic situation. In 2011, Kristen LaBrie, a single, unemployed mother of a non-verbal, severely autistic son, was sentenced 8-10 years in prison for attempted murder because she withheld drugs that made him sicker. They had made it through 4 of the 5 phases of the 2nd go-round of chemo before Kristen made her fateful decision.
The prosecution painted Kristen as an embittered woman who let her son die to get back at the world, and especially Jeremy’s father who left the destitute mother and son to fend for themselves when Jeremy was three.
In court documents, Kristen’s crime was failure to give her son medicine that one oncologist claims could have given Jeremy the chance to survive maybe 5 years. The thinking is that Kristen could, if she'd wanted to, follow a complex 2-year protocol that included hospital stays, regular visits to a hospital clinic to receive chemotherapy and at-home administration of several cancer medications. The medical protocol did not include support for the clinically depressed mother who cared for her son in the solitude of poverty and despair.
Unlike the Levys, Kristen had no resources; she didn't start a non-profit and wasn't able to call upon a network of any kind or the support of a well-to-do, intact family. How sad that we don't treat all suffering the same--with empathy and support for all families facing the horrible toll cancer takes.
The prosecution painted Kristen as an embittered woman who let her son die to get back at the world, and especially Jeremy’s father who left the destitute mother and son to fend for themselves when Jeremy was three.
In court documents, Kristen’s crime was failure to give her son medicine that one oncologist claims could have given Jeremy the chance to survive maybe 5 years. The thinking is that Kristen could, if she'd wanted to, follow a complex 2-year protocol that included hospital stays, regular visits to a hospital clinic to receive chemotherapy and at-home administration of several cancer medications. The medical protocol did not include support for the clinically depressed mother who cared for her son in the solitude of poverty and despair.
Unlike the Levys, Kristen had no resources; she didn't start a non-profit and wasn't able to call upon a network of any kind or the support of a well-to-do, intact family. How sad that we don't treat all suffering the same--with empathy and support for all families facing the horrible toll cancer takes.
242
Had I not read the story about the woman I would have agreed to what you said blindly.
Kristen withheld medication AND lied to the doctors about it. Big difference no?
Kristen withheld medication AND lied to the doctors about it. Big difference no?
My heart is with Kristen LaBrie. Her being in prison is a travesty and tragedy. NO government has a right to make decisions about somebody else's medical treatment or to mandate that a child's body be invaded over a parent's decision.
1
Thank you for so beautifully stating what was in my heart throughout reading this article. As a pediatric RN who works in an economically-disadvantaged area, I couldn't stop shaking my head at what a huge difference money, intact families, and other resources make for a parent in these awful circumstances.
1
A riveting story! Once you begin reading, you're drawn into the family's life and death drama. A family that has it all, the storybook life, finds itself in the vice grip of a disease with few happy endings. But it is a family with many resources. What if every child and their family in America could receive such care and support?
21
Go Andrew!
I think the view of not treating the child as normally as possible is wrong.
No matter what anyone thinks they know of a child's prospects, the best quality of life for a child is to be treated as a normal child being given and restricted from the same things one would if one did not think they were going to die young.
Another point is that you should enjoy every moment as if the child were normal and work at preventing yourself from indulging the resentment a parent would surely feel in such a situation. If they are going to die you can save it for the grieving process, and if they don't you won't need to withdraw from that account.
I think the view of not treating the child as normally as possible is wrong.
No matter what anyone thinks they know of a child's prospects, the best quality of life for a child is to be treated as a normal child being given and restricted from the same things one would if one did not think they were going to die young.
Another point is that you should enjoy every moment as if the child were normal and work at preventing yourself from indulging the resentment a parent would surely feel in such a situation. If they are going to die you can save it for the grieving process, and if they don't you won't need to withdraw from that account.
5
How odd that you would be so confident as to criticize their perspective. You have no way of knowing what is the best path in this situation.
I applaud the Levys for making the very hard choice to stop treatment. I will save this article and make sure I reread it when next faced with a difficult medical decision.
Odds are not small my husband will have a recurrence one day, and at that point I suspect he will refuse all but palliative care. It will be the right choice, but giving in to fate will not be easy for me, but I will do it with Esther and Dan's experience beside me.
I don't think doctors truly understand how horrible it is to be poisoned while already ill with disease. Chemo may bring some miracles, but it is brutal. We know they underestimate the challenges of cancer treatment because we have seen too many cases of oncologists making less invasive choices about their own care.
Odds are not small my husband will have a recurrence one day, and at that point I suspect he will refuse all but palliative care. It will be the right choice, but giving in to fate will not be easy for me, but I will do it with Esther and Dan's experience beside me.
I don't think doctors truly understand how horrible it is to be poisoned while already ill with disease. Chemo may bring some miracles, but it is brutal. We know they underestimate the challenges of cancer treatment because we have seen too many cases of oncologists making less invasive choices about their own care.
24
... just a small, tiny point... It scared me when the father wanted to give his son vitamins. Vitamins are totally unregulated and most lab studies show they are filled with all kinds of poisons... As a small point, it is frustrating to me that we want to give these unregulated pills to the most vulnerable. Their decision to stop treatment is to be respected--their reasons given seem very sound and very humaine. It obviously was an extremely difficult decision. But I think that choice should be clearly differentiated from the choice to seek alternative treatments or unapproved pills.
4
Not every vitamin is unknown - some have undergone laboratory tests. And a standard vitamin is hardly an alternative treatment.
I am sorry to keep writing so much but one more thought.... There is a scene in the movie, "My Left Foot," where Christy, a 19 year old man with cerebral palsy is receiving therapy from an attractive therapist. She has taken him on as a project, a case study. Christy is enjoying the attention and is making progress of a sort. Christy's mother overhears the session. Instead of feeling happiness, she is concerned about the "hope in his voice." Later on Christy publicly declares his love for the therapist who was mortified at the thought.
Hope is just there, but people shouldn't preach it to another because the person is trying terribly hard to manage it in order to keep their sanity.
Hope is just there, but people shouldn't preach it to another because the person is trying terribly hard to manage it in order to keep their sanity.
13
I had two sisters (of my 6 siblings) with unusual health problems during my childhood. One sister was born with "Femoral Hypoplasia and Unusual Facies Syndrome" (a very rare congenital disorder not thought to be hereditary or genetic, cause unknown) and a sister who developed Neuroblastoma at age 5. After a great deal of very difficult chemotherapy and radiation and surgeries for metastatic disease, she unexpectedly survived. Medical literature suggests that her late turn for the better may have been related to having developed Hepatitis B. An proper immune response has a great deal to do with recovery from many (most?) cancers, but it is evident that although we know a lot about many types of cancer and congenital diseases, we do not seem to be making much headway in the prevention of cancers or why some otherwise "normal" children get these things when most do not. Is it always random, or unpredictable? That is one of the big puzzles of our time.
11
Have read elsewhere about cancer cells being wiped out when an infection stimulated the immune system. Boosting the immune system appears to be the best approach to curing, and perhaps to preventing cancer. And we can all take some steps -- reducing stress, getting adequate sleep and exercise -- to nurturing our immune systems. We can all do this, right now, even though medicine does not yet have the knowledge and tools we hope to someday have. It's such an old platitude but still true: prevention is the best medicine.
10
My father in the 1970s had a tumor removed at Sloan Kettering and before release had very high temperature and had to be put on an ice bed. He was given six months to live because it spread. Six months later no sign of cancer. Died an old man. The hospital never investigated what happened. But something did. All they knew was cut, burn , or poison. I hope the Dr's look into this little child's recovery more thoroughly.
18
"a survival rate of about one in six" is better than a survival rate of one in ten. I think the reporter must have misunderstood something along the way.
8
I think the implication is that, because he had both rare conditions, his odds were exceptionally low. His odds were already 1 in 10, then it was discovered that he had a separate condition that would make his odds 1 in 6 even if he didn't have the first complicating factor. So if you use standard equations, his odds were about 1 in 60.
16
I think he had two indications of a poor prognosis. One that lowered the 50 percent chance of survival to ten percent and one that lowered it to fifteen percent or so. So he would have to be both the one in ten AND the one in six. Luckiest of the unluckiest, indeed.
6
Going from "A Nightmare Court, Worthy of Dickens" (Thank God I read "Bleak House" in school), to the rarified world of Andrew Levy's parents and $10 million dollar houses in Atherton, makes me grateful for Andrew Levy's mysterious recovery and more determined than ever to vote for Bernie Sanders. No two stories better exemplify the disparagements between the classes in this country.
46
I don't think it was the family's affluence that resulted in a (for now) happy outcome--after all Stanford treats sick children from much less affluent families--as much as it was the parents' decisions and determination. This may be more a factor of education and therefore, sadly, of class, than it is of income inequality.
23
I don't know what I would have done if confronted with the awful decisions the Levys faced. I imagine they were given all sorts of unsolicited advice when they stopped further treatment. I remember when people told me I was lucky because I had the good cancer, thyroid. I certainly didn't feel lucky yet my cancer was nothing compared to what Andrew Levy and his family went through. All I can add is that after reading the article, I just want to wish Andrew a wonderful life.
12
I did not read the article ..... Only its title. And the answer is clear ... NEVER ... You never give up. What that means varies but fundamentally for a child the answer is NEVER
4
I think the article is mis-titled. They didn't give up on each other or their child. They saw that quality of life and maintaining a family was just as important as medical technology. They were incredibly brave not to give up on loving their son.
15
Maybe if you read the article, you would see that the parents' act of "giving up" -- a difficult but loving decision made to save their child, their other children, and themselves further pain and anguish -- is what ultimately might have saved their child's life.
25
You should have read the article before getting worked up.
1
I lost my college sweetheart to Leukemia. She was 21, having fought a rare biphenotypic variety for over a year.
Now, 25 years later, I still bear the scars. I've married and had 2 girls of my own, and have a wonderful life. But I still have to fight, actively, not to live in fear. I watched her family suffer, and ultimately break apart, under the strain of the struggle, and the unspeakable pain of losing a child. I was so angry, for so long, over false hopes and bad fortune.
Since then, I have approached every relationship with a touch of dread. What if, I wonder, I lose another love? Would I lose what's left of my optimism? What would my wife look like without hair? What if one of my children.....
This is the survivor's curse, and I imagine it is the same for Andrew's family. Once cancer comes calling, your outlook is never the same. You can't get over it, only past it. And it does take time.
There is, however, a certain peace in confronting the unbearable, in thinking the unthinkable, living despite the special knowledge that life isn't always beautiful. I have forced myself, over the years, to focus on a pragmatic optimism - the best you can hope for is to hope for the best.
Now, 25 years later, I still bear the scars. I've married and had 2 girls of my own, and have a wonderful life. But I still have to fight, actively, not to live in fear. I watched her family suffer, and ultimately break apart, under the strain of the struggle, and the unspeakable pain of losing a child. I was so angry, for so long, over false hopes and bad fortune.
Since then, I have approached every relationship with a touch of dread. What if, I wonder, I lose another love? Would I lose what's left of my optimism? What would my wife look like without hair? What if one of my children.....
This is the survivor's curse, and I imagine it is the same for Andrew's family. Once cancer comes calling, your outlook is never the same. You can't get over it, only past it. And it does take time.
There is, however, a certain peace in confronting the unbearable, in thinking the unthinkable, living despite the special knowledge that life isn't always beautiful. I have forced myself, over the years, to focus on a pragmatic optimism - the best you can hope for is to hope for the best.
35
Thank you so much for this eloquent post. I lost both parents to cancer. Now that I have my own young family, I find the losses creep back in, along with their cruel mix of sadness, fear and anxiety. Your last two paragraphs resonated with me, and with the forever "before" and "after" experience that is real loss. I have copied it and saved it to read again when I need to. Take care.
This is a very emotional story and presents aspects of illness previously unwritten about. It actually feels more about the psychological impact of illness on the parents than it does about the child's illness. That said, there is still much mystery about the human body and even though scientists deny it, science is not exact. Should there always be hope? I don't know. But most human beings cling to the concept of some kind of hope or possibility for help and change. Because unpredicted things happen all the time. More Americans should be willing to defy doctors so that they and their children live their lives by their own standards-- not the standards of inexact science. Having said all of that, it is clear that this family is very, very privileged with money and opportunities that most people in their situation do not have. i hope they know and appreciate that.
10
I broke down reading this. Beautiful.
I also saw my child come back from the edge of the grave while living with him for months in the hospital; our family shares that balance between hope and dread, with a congenital heart defect. One gift of the experience has been a perspective that occasionally reminds me to stop and be in the present moment. As life intervenes and demands hectic-ness, the memory can remind me that each moment is a gift.
Much love to Andrew and his family.
I also saw my child come back from the edge of the grave while living with him for months in the hospital; our family shares that balance between hope and dread, with a congenital heart defect. One gift of the experience has been a perspective that occasionally reminds me to stop and be in the present moment. As life intervenes and demands hectic-ness, the memory can remind me that each moment is a gift.
Much love to Andrew and his family.
13
A very difficult article to read as it brought back the terrible memories of my own daughter's passing from AML. Their story is surely the black swan event unfortunately and the guilt and second guessing of thousands of decisions you make during treatment never really leave you. I wish them and their family the best
26
Doctors' natural impulse is to treat treat treat and test test test. Both of the grandparents on my mom's side refused to see a doctor for any reason. They lived just as long as the grandparents on my dad's side. I realize this is anecdotal, but now I compare my own mom whose only medical treatment is walking two hours a day and eating reasonably healthy to my mother-in-law who takes at least 10 different medicines, some to treat side effects brought on by other medications, and I've pretty much decided to follow my maternal grandparents' route and avoid doctors except for obvious things that can be fixed, such as broken bones.
21
Heart disease kills more than all other causes COMBINED. Avoiding the heart doctor so zealously may expedite your meeting with the mortician. "An ounce of prevention is worth a pound of cure."
9
Without his bone marrow transplant, Andrew would have died.
14
Conflating cause and effect. Just sayin.
A mood elevator if I ever saw one. I appreciated the lift.
7
The photograph of Andrew walking away while his mother stands in an almost hopeless posture says it all about the fears of being a parent.
8
As an occasional critic of the magazine's work as pompous and over-written, I have to say this is just a remarkable piece. It's a remarkable story, and extraordinarily well written. Despite the overly sanitary description of a miracle as a "rare evocation of a concept out side science," this is a remarkable story about a remarkable family. And yes, there is nothing anti-intellectual about believing in God-given miracles.
10
Andrew and his brother and sister are very lucky. They have the BEST parents.
Their example should make us all stop and ask what is truly important in life, and strive to be better in how we treat one another. They have given us all an immeasurable gift. Let's not squander this one. Please.
Their example should make us all stop and ask what is truly important in life, and strive to be better in how we treat one another. They have given us all an immeasurable gift. Let's not squander this one. Please.
17
Great article, amazing story.
It's also important in this discussion to note that childhood blood cancer (ie leukemia) was nearly universally fatal into the 1960s. Now with a combination of chemotherapy and, in some cases bone marrow transplant and immune therapy, it is nearly 90% curable. Something to remember when discussing what we do and don't know about cancer. Yes, our knowledge is ever expanding, but we have come an incredibly long way.
It's also important in this discussion to note that childhood blood cancer (ie leukemia) was nearly universally fatal into the 1960s. Now with a combination of chemotherapy and, in some cases bone marrow transplant and immune therapy, it is nearly 90% curable. Something to remember when discussing what we do and don't know about cancer. Yes, our knowledge is ever expanding, but we have come an incredibly long way.
17
I cannot share the view that this family's story represents an unalloyed happy ending. The agonizing ordeal they have all - quite literally - survived, has introduced a permanent palette of darker colors to their emotional lives for as long as they live. It has changed each of them in unknowable ways, indelibly.
As in one of Hitchcock's most deeply disturbing films, "The Wrong Man," the eventual undoing of the grave injustice suffered by the title character that sets the story in motion, does nothing to heal the scars that injustice left in his wife's psyche. Though he is exonerated, she is irretrievably condemned psychologically and emotionally.
The long-term effects of this searing experience will play out for each of these family members over years, decades, their entire lives. Nothing will ever be the same for any of them.
As in one of Hitchcock's most deeply disturbing films, "The Wrong Man," the eventual undoing of the grave injustice suffered by the title character that sets the story in motion, does nothing to heal the scars that injustice left in his wife's psyche. Though he is exonerated, she is irretrievably condemned psychologically and emotionally.
The long-term effects of this searing experience will play out for each of these family members over years, decades, their entire lives. Nothing will ever be the same for any of them.
16
Straw man.
The happy outcome here raises a question: Is there any merit to the idea of deliberately introducing an infection -- as an absolute last resort, needless to say -- in the hope of jolting the immune system into producing white cells if the marrow transplant, as in Andrew's case, initially didn't work? Testing the idea would be extremely difficult -- perhaps even impossible -- due to the extreme rarity of the condition, not to mention the ethical alarms that such a treatment would properly raise. Still, the question is intriguing.
22
Beautiful story, Melanie!
2
A lovely story that brought tears to my eyes. May it have a happy ending for Andrew and his wonderful family.
3
One thing to consider in all of this is the mother-child relationship. My adult son is autistic. During his formative years, I had to be both a mother and a teacher, speech therapist, occupational therapist, etc. Esther had to be a mother and a nurse, doctor, therapist of all sorts too. There is conflict between these roles.
The treatment for autism is for the people around the autistic person to use applied behavior analysis. You identify the behaviors you want then teach and reward that behavior in kind of a scientific way. I tried to make this as natural as possible, but it was robotic at times, and unmotherly too. I sometimes felt that the "cure" was taking too great a toll, particularly as he got older and resisted having his behavior "modified," which struck me as a healthy response. I think about Esther with her son in the hospital and how every visceral part of her as a mother must have wanted to protect her son from the needles and chemo, yet she had to be there, with him, also as a mother. You wonder what your child thinks. You wonder if they understand that you are doing this for their own good. You feel so unnatural.
Part of the equation in these circumstances are the bonds between the people involved. Professionals need to understand that treatment messes with these bonds. Families know the importance, for without them, their is very little else the sick person has.
The treatment for autism is for the people around the autistic person to use applied behavior analysis. You identify the behaviors you want then teach and reward that behavior in kind of a scientific way. I tried to make this as natural as possible, but it was robotic at times, and unmotherly too. I sometimes felt that the "cure" was taking too great a toll, particularly as he got older and resisted having his behavior "modified," which struck me as a healthy response. I think about Esther with her son in the hospital and how every visceral part of her as a mother must have wanted to protect her son from the needles and chemo, yet she had to be there, with him, also as a mother. You wonder what your child thinks. You wonder if they understand that you are doing this for their own good. You feel so unnatural.
Part of the equation in these circumstances are the bonds between the people involved. Professionals need to understand that treatment messes with these bonds. Families know the importance, for without them, their is very little else the sick person has.
11
Perhaps if we cleaned up our environment (which doesn't require any research or 50 years and billions of dollars and PhDs), got rid of toxic chemicals in our food, our cosmetics, our cleaning supplies, our couches and mattresses.... if we got rid of junk food, and had more time to lie on the grass and listen to the birds sing and the trees sway in the breeze, our cancer rates would go down to where they were 50 or 100 years ago and we wouldn't need to spend so much money on research and treatment. And of course, there would be less suffering for all involved - except the cancer research industry.
6
Nice dream but devoid of reality. The main reason for the increase in cancer rates is the increase in life expectancy (if you discount the known cancer causes such as smoking). The more older people there are the higher the cancer rate. Cancer rates in children are virtually static. If cancer rates are adjusted for age cancer rates are in fact decreasing in some cases quite dramatically a good example is cervical cancer which as the HPV vaccine takes hold may some day in the not too distant future, basically disappear. Although we love to blame environmental degradation for everything, the link of malignancy to most environmental contaminants other than radiation, aromatic organic compounds and a few heavy metals is less than clear. The most common "cause" of cancer is being old, having bad genes or bad luck.
19
... And you even manage to resent cancer researchers! Lol.
May I and other readers offer our most sincere appreciation to the family for sharing what has to be one of the most difficult things to have happen to them.
The author was very restrained in giving enormous credit to the family's or anyone's religion. At many points in the story I was expected the next paragraph to begin extolling the view that the family finally started praying hard enough to get some divine intervention. Instead and refreshingly so in this country lately, the discussion turned to an attempt for the scientists and doctors and support personnel to explain it through their understanding of infections, chemo, bone marrow regrowth and so on.
At a time that it would be easy enough to say that G-d works in mysterious ways, the mother was firmly committed to Andrew's best care and that of his siblings, the rest of her family.
Perhaps this can be a new avenue of exploration to allow the dedicated teams treating our littlest ones to see if they can intentionally trigger the white cell eruption and carry even more patients to what seems to be a cure.
Then, indeed, G-d will have worked in a mysterious way through this whole episode. In any event, for those who don't have a belief in a higher being, then there is still this wonderful hope.
The author was very restrained in giving enormous credit to the family's or anyone's religion. At many points in the story I was expected the next paragraph to begin extolling the view that the family finally started praying hard enough to get some divine intervention. Instead and refreshingly so in this country lately, the discussion turned to an attempt for the scientists and doctors and support personnel to explain it through their understanding of infections, chemo, bone marrow regrowth and so on.
At a time that it would be easy enough to say that G-d works in mysterious ways, the mother was firmly committed to Andrew's best care and that of his siblings, the rest of her family.
Perhaps this can be a new avenue of exploration to allow the dedicated teams treating our littlest ones to see if they can intentionally trigger the white cell eruption and carry even more patients to what seems to be a cure.
Then, indeed, G-d will have worked in a mysterious way through this whole episode. In any event, for those who don't have a belief in a higher being, then there is still this wonderful hope.
6
I thrilled this little boy had a good outcome. His recuperation was due to a very well known, though unpredictable, side effect of bone marrow transplantation. Its a type of graft vs host disease known as graft vs leukemia. His brothers marrow simply recognized his leukemia as "foreign " tissue and killed it. Its one of the reasons while very closely matched marrows are often advantageous to perfectly matched (identical twin) ones. This is simply another example of how the most "advanced medicine" is still limited in its scope and knowledge. Sometimes luck trumps the best laid schemes of mice and men.
14
Momma says....."Miracles come from coincidences,luck. They come from human hands and feet,that get things wrong sometimes. But they still come if we just get out of the way."
What a great message of a story.
What a great message of a story.
2
Amazing story. And kudos to the parents for having the strength to make that difficult decision at a certain point, that Andrew's quality of life was more important that putting him and the family through endless, and potentially futile, additional treatments. It's always a very delicate balancing act...trying to 'save' someone, and making the decision to forego treatments and let what will be, be. I too believe that quality of life should supersede prolonging life at any and all costs, which far too many Americans do to their own (and their family members') detriment, all because of fear of death.
3
One of the hardest things is learning that our children aren't safe from the world, not ever, not even if they outlast--to everyone's surprise--a terrible disease. This most devastating realization can also help us to grasp that every day is a gift. Nothing is the same, once this point is understood.
15
Beautifully written; flawless, should win a Pulitzer.
20
My daughter was born in a world famous teaching hospital, and after taking her first breath, never took another unassisted breath for the next 30 days of her life, which she spent in a medically induced coma in an intensive neonatal care unit. I set about questioning and challenging everything the doctors told me, demanding they bring additional specialists in and in general making a huge nuisance of myself. It worked. I got my daughter back intact. There are times in life
when it is important not to be a nice person.
when it is important not to be a nice person.
41
I'd like to remind some of my fellow commenters here that no amount of wealth and privilege can insulate you from the suffering of your child as described here. Any of us so blessed as to have dealt with nothing worse than a teething infant, say, understands that even "normal" pain and discomfort in a child feels awful to a parent trying to soothe it.
When you must agree to horrible interventions in the hope of saving your child, and help to hold that child down while strangers to that child do terrifying things to it, your ability to purchase a manor-style house mean very little.
When you have agreed to all these interventions, and listened to your child screaming until he/she falls asleep from exhaustion, and then you are still told that your child is going to die, you must feel things that the rest of us fervently thank God we have not been forced to confront.
Beyond everything, this is the most basic human story of trying to protect your child; of thinking that you failed; and of being given a miracle you could no longer imagine receiving. Mrs. Levy is experiencing a very specialized form of PTSD that is a microcosm of hell.
This, as with every cancer, is a unique experience because every person reacts uniquely to treatment. It's of course fortunate that both Andrew and his donor sibling were likely very well-nourished and cared-for children; etc. etc. etc. But in the end there are mysteries science hasn't yet unraveled and it's fair to call them miracles.
When you must agree to horrible interventions in the hope of saving your child, and help to hold that child down while strangers to that child do terrifying things to it, your ability to purchase a manor-style house mean very little.
When you have agreed to all these interventions, and listened to your child screaming until he/she falls asleep from exhaustion, and then you are still told that your child is going to die, you must feel things that the rest of us fervently thank God we have not been forced to confront.
Beyond everything, this is the most basic human story of trying to protect your child; of thinking that you failed; and of being given a miracle you could no longer imagine receiving. Mrs. Levy is experiencing a very specialized form of PTSD that is a microcosm of hell.
This, as with every cancer, is a unique experience because every person reacts uniquely to treatment. It's of course fortunate that both Andrew and his donor sibling were likely very well-nourished and cared-for children; etc. etc. etc. But in the end there are mysteries science hasn't yet unraveled and it's fair to call them miracles.
52
I think this is the most compassionate and comprehending comment I have read. Thanks for writing it.
1
A beautiful ending and I thank this family for sharing this trauma with us.
Esther and Dan, I hope you will perhaps consider therapy as time goes on. I think of it as a dumping ground - you can spend that time with the therapist saying "the unsayable", weeping, wailing, laughing, expressing fury, and then perhaps feel a sense of growing relief outside that therapy space. You deserve to feel a sense of happiness and peace.
Esther and Dan, I hope you will perhaps consider therapy as time goes on. I think of it as a dumping ground - you can spend that time with the therapist saying "the unsayable", weeping, wailing, laughing, expressing fury, and then perhaps feel a sense of growing relief outside that therapy space. You deserve to feel a sense of happiness and peace.
14
I am speechless. What a horrible agony to have to wait and not know whether your child will live or die.
5
you mean like we all wait and wonder when we will all die ?
10
Not quite that way. This child had a terminal diagnoses Nobody lives forever. If you read the article in its entirety maybe you would of thought before you spoke.
No, Godfrey Daniels. Like relatively few of us wait to see what a known disease will do to our small child, whose case is sufficiently unusual that there is no reasonable prognosis.
Fascinating and moving article.
3
Andrew’s medical experience may be a miracle; something like what happened to my father when I was a preteen, more than fifty years ago. He acquired an infection, serious and unrelenting, after open back surgery. (HAI, hospital acquired infection, is the current term.) Hospitalized for six months, he was sent home to die. He lay in his own bed again, on a sheepskin blanket - to limit bedsores. A tube drained fluid from his open back, his excruciating pain numbed by morphine. I felt like he was already dead. My mother never lost hope, though, and prayed constantly. For months, around-the clock, she cared for him, cleaning him, changing his dressing, washing the bed coverings by hand. Somehow his infection was eventually defeated. I learned never to give up. Mother reminded me of this important lesson, again, when I told her I had cancer. Life is just so mysterious sometimes; medicine has limits, and the human spirit really can overcome.
22
Life can work out in strange and mysterious ways indeed. This story is almost as strange as the first cases of people surviving rabies. You never know what a life may have to offer humanity until that gift unfolds. Fighting cancer is truly awful. I'm glad we have yet another survivor in our ranks.
9
As a medical student hoping to go into surgical oncology, it is always uplifting to hear stories like that of Andrew and his family - stories of perseverance, hope, and a love for life.
At 13, my younger brother, James, was diagnosed with Osteosarcoma - a form of pediatric bone cancer. And while he did his best to make the most of the time he had, 7.5 years later, after countless rounds of chemo, radiation, surgeries, and experimental trials, James died. During that time, as one might imagine, James and our family learned a lot about pediatric cancer. One of the most shocking things we learned was just how underfunded pediatric cancer research is in the United States. In the US, there are about 16,000 children ages 0-19 diagnosed with cancer each year. That's just referring to the number of children diagnosed with cancer; it doesn't go into the the types of cancer these children are diagnosed with. When you think about that number in the context of people diagnosed with cancer annually, it's extraordinarily small. As a result, only 4% of federal funding goes towards pediatric cancer research, and pharmaceutical companies do not view pediatric cancer research as a "profitable market."
Imagine how much better our world would be if every story we heard of a child with cancer was more like Andrew's - a story of hope where our communities and our societies have the opportunity to see the kind of positive impact these children can make when given the chance to life a full life.
At 13, my younger brother, James, was diagnosed with Osteosarcoma - a form of pediatric bone cancer. And while he did his best to make the most of the time he had, 7.5 years later, after countless rounds of chemo, radiation, surgeries, and experimental trials, James died. During that time, as one might imagine, James and our family learned a lot about pediatric cancer. One of the most shocking things we learned was just how underfunded pediatric cancer research is in the United States. In the US, there are about 16,000 children ages 0-19 diagnosed with cancer each year. That's just referring to the number of children diagnosed with cancer; it doesn't go into the the types of cancer these children are diagnosed with. When you think about that number in the context of people diagnosed with cancer annually, it's extraordinarily small. As a result, only 4% of federal funding goes towards pediatric cancer research, and pharmaceutical companies do not view pediatric cancer research as a "profitable market."
Imagine how much better our world would be if every story we heard of a child with cancer was more like Andrew's - a story of hope where our communities and our societies have the opportunity to see the kind of positive impact these children can make when given the chance to life a full life.
20
In listening to the heart one is never amiss.
6
Multiple infections have plagued me for my entire life. Meningitis (many times) Sepsis, Scarlett Fever, Mononucleosis, Pleurisy (five times) Infectious Bronchitis (one hundred times!) Appendicitis, Peritonitis ( many times) bone infections, ear infections, eye infections, horrific sinusitis, umbilical infection, bladder and kidney infections, and severe asthma also with ever present eosinophilia (1800.) I have been told many times that a blood cancer was "brewing.") No blood cancers have appeared . . . and my body mysteriously caused a "blood cancer marker" that showed up in a bone marrow biopsy to simply perish. I suffered chills & fevers for decades & decades. Ultimately, the NIH where I was an inpatient for an cancer work up for weeks and then monitored for two years decided to label me as having "fevers of unknown origin."
Most of my siblings are dead from cancers. They never had infections of any sort.
I am now of the belief that my body has eluded familial cancers BECAUSE of infections. All that nasty bacteria threw my immune system into high gear, and saved me.
Not so much of a riddle any longer . . .
And so, for little Andrew & his brave family, I believe all of you will be enjoying each other for many years to come.
Be happy, and love one another as you do now. You will have a wonderful life together!
Many more blessings to all of you . . .
Most of my siblings are dead from cancers. They never had infections of any sort.
I am now of the belief that my body has eluded familial cancers BECAUSE of infections. All that nasty bacteria threw my immune system into high gear, and saved me.
Not so much of a riddle any longer . . .
And so, for little Andrew & his brave family, I believe all of you will be enjoying each other for many years to come.
Be happy, and love one another as you do now. You will have a wonderful life together!
Many more blessings to all of you . . .
27
Umbilical infection? Never even knew there was any such thing
Thank you for posting my comments. First sentence: I meant "INCITEFUL/INSIGHTFUL" (Not in caps). I often do this because text that is both interesting to me. To incite and be insightful is a twofold idea that is meaningful to me. Sometimes, what appears to be a mistake is a sly way of expression... for Southerners anyway... .
1
I think this article teaches us that life is uncertain. We can plan all we want for the future but it could all be gone this afternoon. I also think it is true that once you lose all hope, things start to turn around. The great irony of acceptance. It doesn't mean that the outcome is always good, but once we let go, things happen. I don't know why it is that way. Good luck to this little boy and his family. May they know happy days ahead. (btw, they were very lucky to have the means to get all this medical help, not all people have this).
13
(Acceptance is a prime lesson. It can be learned by practicing zen meditation. It has been a learning that has served me in good stead during a decades-long trying time.
And could we drop the reminders that this family's wealthy circumstances are not what everybody has?)
And could we drop the reminders that this family's wealthy circumstances are not what everybody has?)
1
I am still haunted by my baby sister's treatment and death from rabdomyosarcoma, a rare and deadly muscle cancer, nearly twenty years ago. Often I wonder what would happened had my parents gave up on chemo and just let my sister enjoy what little time she had left, rather than enduring what seemed like torture. After her remission ended, only the barbarism continued. Until there are better options available other than chemo and radiation, I vow to never endure what I witnessed if, God forbid, I get a cancer diagnosis. Good for this family.
23
A very touching story. But I have to ask: How do the Levy's afford the medical care? What are the costs? The mother and father appear to be young. The pictures show very nice home with a swimming pool. Insurance doesn't cover payments for an apartment next to the hospital. It seems apparent to me that the Levy's can afford what must be over a million dollars in medical bills.
The NYT fails its readers by not talking about the cost. The vast majority of American's could not afford this level of care. Not even close.
The NYT fails its readers by not talking about the cost. The vast majority of American's could not afford this level of care. Not even close.
172
Dan Levy is a VP at Facebook. I think that's self-explanatory.
17
Please, this is about the love of a child and the agony that love imposed on them, as it would any of us. They are "the luckiest of the unlucky."
As a parent all I could do is weep for them as I read their story. One could infer that because they could afford this level of care, they suffered mightily (but they also have their child). A child with this form of cancer, born to a poor family, would have died relatively quickly and the pain of loss would have stung, as all deaths do. However, this family has suffered the pain of loss every day since the initial diagnosis, and still is, knowing that the cancer could still return.
As a parent all I could do is weep for them as I read their story. One could infer that because they could afford this level of care, they suffered mightily (but they also have their child). A child with this form of cancer, born to a poor family, would have died relatively quickly and the pain of loss would have stung, as all deaths do. However, this family has suffered the pain of loss every day since the initial diagnosis, and still is, knowing that the cancer could still return.
5
Their home is in Atherton, an exclusive township in the already exorbitant Bay Area. It is worth at least several million dollars. As a parent and fellow human being, I found this story moving. It did raise many sociological questions (read: class) in my mind, however, about the perfection of the Levy's lives, their access to cutting edge medical care at Stanford (and faraway labs), and how anyone outside the 1% would be a footnote in the case studies their son's doctors were reading. The class issue - unmentioned in the story but screaming from the wings - doesn't diminish my sympathy for their living grief, but how can the author (who is perhaps their friend?) gloss over these stark realities?
52
We are all dancing on thin ice, every day. Some of us know it, and some of us don't. I am glad that little Andrew is healthy. I wish continued health, and strength to the parents.
30
great story.
6
This poor mother and poor family. I can only imagine the stress. I hope the child grows up to be strong and happy, and that the parents can slowly overcome this trauma.
13
I am in awe of Andrew's parents and their decision to choose quality of life over length of life for their son, not only an extremely courageous choice, but one that had unexpectedly wonderful results. This article reinforces my belief that our bodies' immune systems have great potential to heal and defeat even some of the deadliest cancers...if we can only learn how to boost the immune system when it's powers are most needed, Andrew's parents inadvertently pulled off this feat.. I hope he has a long and happy life.
24
Do we ever give bmt patients breastmilk to help build their immune systems?
5
Sometimes the body heals itself. I never used to believe this--but occasionally painful, recommended treatments that eradicate cancer cells only make things worse. This boy seems to have healed himself--with or without his brother's bone marrow.
http://www.thecriticalmom.blogspot.com
http://www.thecriticalmom.blogspot.com
5
Good article. I don't think anyone can judge the mother's decision-making from the outside. I suppose that's the moral of the story. But in a sense the happy ending belies the dilemma and the impossible choices something like this imposes on a family.
And in regards to comments about privilege and class, I suppose that it's fairly obvious any family comprised of dual-income Stanford grads that worked at places like Facebook over the past decade and own a decent home in that part of the country are near the extreme tippy-top of the socioeconomic scale.
And obviously we all know that in the real world, even in a society with a single-payer healthcare system, being well-off buys you better things in life. That's the nature of capitalism and the price system--it's how we allocate scarce goods and services, like the services of highly trained medical doctors.
Is that system good or bad? Maybe that's putting it too simply, but it's obviously a question over which revolutions and wars have been fought. I think it is a bit facile to write off the price system as biased toward the privileged and end the discussion.
And in regards to comments about privilege and class, I suppose that it's fairly obvious any family comprised of dual-income Stanford grads that worked at places like Facebook over the past decade and own a decent home in that part of the country are near the extreme tippy-top of the socioeconomic scale.
And obviously we all know that in the real world, even in a society with a single-payer healthcare system, being well-off buys you better things in life. That's the nature of capitalism and the price system--it's how we allocate scarce goods and services, like the services of highly trained medical doctors.
Is that system good or bad? Maybe that's putting it too simply, but it's obviously a question over which revolutions and wars have been fought. I think it is a bit facile to write off the price system as biased toward the privileged and end the discussion.
19
Immediately. Why should inordinate amounts of resources be used in a potentially futile effort to keep someone alive when otherwise healthy children are dying of starvation?
7
Because the starving children have even more children and then there are even more starving people. To think, in 1966, the Catholic Church might have reversed its ban on artificial contraception.
As the mother of a liver transplant recipient who received her liver (which was not a match) almost 16 years ago after only 5 days on the transplant list, I understand the desperation and agony that this very fortunate family has endured, and I wish them a wonderful outcome, as we had with our own "miracle" child. Our daughter is now married with 2 beautiful children. Esther, the fear will ease over time and life will begin again to feel safe and uneventful (our saying: "boring is good!"). I wish all of you a long and happy life together!
34
This is another example of God's signs, wonders, an miracles. Jesus is King of Kings and Lord of Lords.
10
Leah, If the King of Kings and Lord of Lords performed this miracle, who then can be blamed for inflicting this child with this cruel disease and causing his parents so much angst? ...or was it just a test?
26
No, it's a sign of the love in this family, and the hard work and brilliance of cancer researchers and clinicians. And some luck.
18
You do realize that this family is Jewish, right?
31
Siddhartha Mukherjee's excellent book "The Emperor of All Maladies" gave me a true appreciation for how modern cancer treatments came into being; tiny breakthroughs combined with decades worth of research. Maybe the study of Andrew Levy's case will lead to a cure for AMKL. I wish this boy and his family well.
14
Excellent book; a must read!
4
Dr Mukherjee has a brief book, The Art of Medicine, which I read just last night. In it he describes a six-year-old's being injected with genetically modified immune cells (carrying a cancer-killing virus) when all other avenues had failed. Interestingly, the procedure precipitated a reaction very similar to Andrew's illness and as devastatingly dangerous. She also recovered.
Dr Mukherjee cites the importance of using knowledge from prior experiences to inform treatments in this 88-page volume. Well worth the read, as is the exquisitely written and incomparably optimistic The Emperor of All Maladies. I await his new book The Gene eagerly.
Dr Mukherjee cites the importance of using knowledge from prior experiences to inform treatments in this 88-page volume. Well worth the read, as is the exquisitely written and incomparably optimistic The Emperor of All Maladies. I await his new book The Gene eagerly.
An inspiring story and wonderfully told! Thank you.
3
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.
I do not mean to detract from the awesomeness of this story.
272
This is such an beautiful and moving story. Andrew's parents stood behind what they believed was best for their child then.
My parents had to make similar decision for my younger sister suffering from Non Hodgkins Lymphoma - nearly two decades ago - unfortunately the outcome was not favorable. These decisions of what to do when someone close to you is near-end-of-life are always hard - not just for those suffering from cancer but other illnesses as well. One must take the decision they think best in the interest of the the whole family - the patient and the ones most affected by the situation.
I am very happy to note that Andrew is growing strong and wish him all the best in the future. I am sure , he will conquer it!
My parents had to make similar decision for my younger sister suffering from Non Hodgkins Lymphoma - nearly two decades ago - unfortunately the outcome was not favorable. These decisions of what to do when someone close to you is near-end-of-life are always hard - not just for those suffering from cancer but other illnesses as well. One must take the decision they think best in the interest of the the whole family - the patient and the ones most affected by the situation.
I am very happy to note that Andrew is growing strong and wish him all the best in the future. I am sure , he will conquer it!
13
Great story, but I worry that it might be misinterpreted as an excuse to expect miracles and avoid standard treatment in some who really needs it. This of course is an exceptionally rare disease and the outcome is even more exceptional. We should be careful about perception.
25
I don't believe people are that stupid. We're all adults and are capable of making our own decisions that are rational and thoughtful about our own bodies and the bodies of those in our care. Knowledge only empowers. There is no need to fear it because of "perception."
1
You would be surprised at the complexity of the thought process and multitude of factors that go into the decision making process for those involved with cancer, not just patients and families, but also treating physicians. Perceptions are part of this process and many external factors influence the care decisions.
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.
540
I had this same thought. Not to diminish their suffering, but for the mother to be able to stop working, not go back to work and them to rent an apartment, buy a new house etc, seems like something that would not be available to majority of people. How lucky to be able to spend that time with your child, even as terrifying and painful as it must have been.
38
My thoughts exactly.
2
The story of the illness was profoundly moving and human. The anecdotes about their resources made me feel like I live in a different universe.
6
Wow. Thank you for sharing this story with us. What a miracle. It would have been an important story even if Andrew hadn't recovered (thank goodness he did). Too often, we think they have no choice but to go through hospital and medical treatment even when it only gives us a 1% additional chance of survival, especially when it is for a child. Looking at families that make a different choice gives the rest of us something to think about. As one commenter said, there are no wrong decisions made with love in a time like this.
I hope the Levy family continues to heal.
I hope the Levy family continues to heal.
6
I am completely empathetic with this family and wish them absolutely the best.
I have some personal experience with caregiving. My family lived with my father's long 7 year incurable journey with mesothelioma and dementia. It was extremely difficult. He did not accept caregivers who were not family members making our parenting of our own children - his grandchildren, some with learning issues, stressed.
I have an issue with the reporter's choice of family. Stanford's acceptance rate is 5%. This is the house they bought for privacy during treatment: " 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."
This family does not represent what it is like for the vast majority -95%- of us to live with a family member during a difficult, wrenching and financially devastating illness.
Is it that the diminished choices for strapped families that bankrupt and devastate them would be too rough reading? We would not want to embrace that medical class system that we inhabit? Please reflect more of the common person experiences because most of your readers are in the class. Their stories are far more complicated by the lack of cushion that their class affords them.
I have some personal experience with caregiving. My family lived with my father's long 7 year incurable journey with mesothelioma and dementia. It was extremely difficult. He did not accept caregivers who were not family members making our parenting of our own children - his grandchildren, some with learning issues, stressed.
I have an issue with the reporter's choice of family. Stanford's acceptance rate is 5%. This is the house they bought for privacy during treatment: " 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."
This family does not represent what it is like for the vast majority -95%- of us to live with a family member during a difficult, wrenching and financially devastating illness.
Is it that the diminished choices for strapped families that bankrupt and devastate them would be too rough reading? We would not want to embrace that medical class system that we inhabit? Please reflect more of the common person experiences because most of your readers are in the class. Their stories are far more complicated by the lack of cushion that their class affords them.
74
If they had chosen a different family it wouldn't be the same story. This is a unique medical situation that the Drs treating Andrew had never seen before. The family's income level is irrelevant. Additionally if you read closely the family seems to be friends with the writer which is how she knew of their story.
15
I am far away from 1%, but nonetheless this story fills me with hope. I have no grudges against the fortunes of this family. 1% are human too and they die and get diseases. Reporter chose a story of unconventional course of treatment for a deadly disease, which happened by chance and intuition. But the success of Andrew may inspire new avenues of cancer immunotherapy research, and that will certainly help the future 1% and 99% patients. Peace!
33
The point of the article is not to reflect on economic inequalities but on the emotion toll that a dying child takes on the family. That said, thank you for having raised the economic-background point. Not something that is easy to do because you run the risk of coming across as an embittered, heartless person.
12
Thank thank you for a miracle uplifting story.
6
Andrew's astounding recovery from such a rare form of cancer is an amazing example of the human body's ability to heal itself. It reminded me of many of the stories in Kelly Turner's "Radical Remission: Surviving Cancer Against All Odds." And the story is a beautiful testament to a family's love and devotion for their child.
13
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.
233
There is no such thing as "false" hope. Sometimes life doesn't turn out the way you hoped it would. That doesn't make it false.
Hope for the best, prepare for the worst.
Hope for the best, prepare for the worst.
10
I applaud Esther's honesty in the emotional roller coster of disease. My father had a terminal illness for two thirds of my life with him. Originally given 2-5 years to live, he managed 22 years and I was so grateful to have him as a father as I was growing up, even if it was in a much more limited way. But there were times when 'waiting' for the inevitable seemed to eclipse everything else. I rarely shared that sentiment but when I did it was usually met with horror that I didn't just rejoice in every extra minute rather than feel the weight of what was inevitable. It doesn't mean you love the person any less, but it's difficult to deny that living with illness is awful.
9
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.
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.
952
Good post. Doctors often don't know when to stop. The ego contaminates.
9
So beautifully and heartbreakingly well said.
10
Thank you, Mama Rachel.
4
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.
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.
52
There's an old Persian story about a thief that is sentenced to die by the king. The thief tells the king to spare him for one year: in that year, he will teach the king's horse how to sing. Every day the king's horse was brought to the thief in prison. The other prisoners mocked the thief. He said: "I have a year, and anything can happen. The king may die, or the horse; the king may pardon me. And who knows? Perhaps the horse will learn how to sing."
Sometimes horses do sing, as here.
Sometimes horses do sing, as here.
39
An amazing story. Thank you for sharing it with us.
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.
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.
389
I believe that it is just the opposite. Even in the most adverse circumstances, we live how we decide. When my mother was told she had non-operable cancer, she thought it over, and later told me, "I've decided to be happy." And she was. Reality is malleable.
http://www.theatlantic.com/science/archive/2016/04/the-illusion-of-reali...
http://www.theatlantic.com/science/archive/2016/04/the-illusion-of-reali...
1
Thank you for this.
The last few days I have been reading the difficult but uplifting stories on HONY about cancer treatment for children. And today I read this gem on the Times. "..you will live with that constant balance of hope and fear" - don't we all.
I am saying a prayer for Andrew and his family.
The last few days I have been reading the difficult but uplifting stories on HONY about cancer treatment for children. And today I read this gem on the Times. "..you will live with that constant balance of hope and fear" - don't we all.
I am saying a prayer for Andrew and his family.
5
The 2015 Nobel Prize in Medicine went for discovery of Ivermectin, an “astonishingly safe” FDA approved anti-helminthic drug. 200 million people take the drug globally for prevention or treatment of parasitic disease.
Dr Sharmeen at the University of Toronto screened a library of 100 drugs for activity against a leukemic cell line, and reported Ivermectin as most promising, inducing leukemic cell death at low micromolar concentrations, while sparing normal cells. Ivermectin was also effective against leukemia mouse xenografts. Ivermectin was patented in 2012 for treating hematological malignancy.
Dr Alice Melotti studied Ivermectin as an inhibitor of the WNT‐TCF pathway in cancer. Her report was published in 2014 EMBO molecular medicine. Dr Melotti used a transcriptional reporter assay for TCF activity driven by Beta-CATENIN to test a collection of 1,040 drugs and small molecules. Only one agent, Ivermectin, perfectly tracked the gene expression profile induced by blocking the TCF gene, and therefore blocks the WNT pathway. This has profound significance for anti-cancer stem cell therapy, because blocking the WNT pathway is the key to killing cancer stem cells.
Will Ivermectin revolutionize leukemia treatment making, chemotherapy and stem cell transplant obsolete relics for the medical museum? For entire article with references see:
http://jeffreydachmd.com/2016/03/targeting-cancer-stem-cells-with-nontox...
jeffrey dach md
Dr Sharmeen at the University of Toronto screened a library of 100 drugs for activity against a leukemic cell line, and reported Ivermectin as most promising, inducing leukemic cell death at low micromolar concentrations, while sparing normal cells. Ivermectin was also effective against leukemia mouse xenografts. Ivermectin was patented in 2012 for treating hematological malignancy.
Dr Alice Melotti studied Ivermectin as an inhibitor of the WNT‐TCF pathway in cancer. Her report was published in 2014 EMBO molecular medicine. Dr Melotti used a transcriptional reporter assay for TCF activity driven by Beta-CATENIN to test a collection of 1,040 drugs and small molecules. Only one agent, Ivermectin, perfectly tracked the gene expression profile induced by blocking the TCF gene, and therefore blocks the WNT pathway. This has profound significance for anti-cancer stem cell therapy, because blocking the WNT pathway is the key to killing cancer stem cells.
Will Ivermectin revolutionize leukemia treatment making, chemotherapy and stem cell transplant obsolete relics for the medical museum? For entire article with references see:
http://jeffreydachmd.com/2016/03/targeting-cancer-stem-cells-with-nontox...
jeffrey dach md
8
The Levy's are lucky in that their socio economic status allowed them to focus on Andrew and put their family's needs first in such a horrific time. That is a blessing that so few have going through the same thing.
No amount of money; however, can make parents good parents. I was struck by Dan and Esther's parenting - dedicated, caring, incredibly thoughtful. Those three kids have great parents. I wish the entire family continued health.
No amount of money; however, can make parents good parents. I was struck by Dan and Esther's parenting - dedicated, caring, incredibly thoughtful. Those three kids have great parents. I wish the entire family continued health.
60
To characterize the painful, complicated decision to cease cancer treatment as "giving up" is simplistic and facile.
26
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?
53
I guess you're ignoring all the ways mother nature has historically tried - often with great success - to kill people. "Everything therapeutic mentioned in the story had to do with being outdoors"? Not even close. How about the transplant that was the thing that fundamentally saved his life. Sheesh.
14
"Why not allow mother nature to do this?"
As you said, Treatment bought some time."
The problem is that no one knew how much time the treatment needed. No one ever knows with certainty in complicated or rare cases.
When are the dangers of the hospital greater the dangers from lack of treatment? We often don't know. We travel in the fog, and the lights faintly seen can be misleading.
As you said, Treatment bought some time."
The problem is that no one knew how much time the treatment needed. No one ever knows with certainty in complicated or rare cases.
When are the dangers of the hospital greater the dangers from lack of treatment? We often don't know. We travel in the fog, and the lights faintly seen can be misleading.
8
Why is this a NYT pick? It's full of loosey-goosey sciencey ideas that have no place in this very well researched and written story of a rare cancer that responded to a modification of the existing paradigm of treatment vs. sunlight and Vit D!
15
Early in my career I worked in transplant immunology research at a large Children's hospital. There is something about the early development of the immune system that we still don't understand, so much that the immune responses to donor organs and tissue in infants are vastly different from those in adults and in some cases (with some antibodies/antigens), completely nonexistent. I would wonder if Andrew's recovery is due more to the infant immunology side given that he received the treatment at a very young age than the 'cancer treatment' which in this case wasn't different than the treatment for adults but yielded a very different result. I wish Andrew a long and happy life and hope too, that we can learn from this case.
9
Of all the eye-opening issues raised by this article, the one that hits my gut hardest is the issue of privilege and how it impacted the totality of care (including the parent's decision making process) received by this child. Fantastic education, a facile transition from wonderful-to-awesome fortress-like housing, great healthcare, a close family and comfortable jobs (which made at least the housing and health care possible). As I read the article, I just kept thinking of a child from the ghetto with a less severe form of blood cancer-- she would likely be dead by now and no one would have written her story. For me, this article's strongest undercurrent was not the ultimate miracle, but the privilege of which no one spoke/wrote about. Though, I am thrilled that this boy is alive, I take issue that this family was the "luckiest of the unlucky"; rather, their "luck" (which I'm sure was hard-earned) has never and will never run out for them so long as their privilege endures. May he live a long and prosperous life.
148
I work with children with cancer and their families. Yes, life is much easier when there are resources to support you, but don't write off the less than privileged. There are things money cannot buy--love, acceptance, support--and these less-than-well-off parents and their extended families provide it. The children of parents occupying the lower socioeconomic spectra are treated no differently than the well-off by the staff and they are provided the same types of treatment. I am not denying that different tiers of medical care exist in this country, but that is not always the sole factor in determining outcome.
8
The privilege you speak of was not merely bestowed upon these people. Their family's economic success is the product of decades and generations of hard work, smart decision-making, and careful planning. And yes, some luck. After all, this article is in part a story of fate and how at some point we must all except its role in our lives.
Two generations before the grandmother died in a concentration camp and most likely the other grandparents were penniless immigrants starting their lives from scratch. Not to mention as Jews they were likely excluded from all sorts of industries and racial quota policies at universities made paths like medical school very difficult. Certainly our society can do more to break the cycle of poverty that leads to an entrenched underclass, and we need to do more. I don't see how that action starts with bigoted generalizations about the lives of those who have succeeded. In my opinion the #privilege movement is disingenuous and racist. Let's keep the focus on #blacklivesmatter instead.
Two generations before the grandmother died in a concentration camp and most likely the other grandparents were penniless immigrants starting their lives from scratch. Not to mention as Jews they were likely excluded from all sorts of industries and racial quota policies at universities made paths like medical school very difficult. Certainly our society can do more to break the cycle of poverty that leads to an entrenched underclass, and we need to do more. I don't see how that action starts with bigoted generalizations about the lives of those who have succeeded. In my opinion the #privilege movement is disingenuous and racist. Let's keep the focus on #blacklivesmatter instead.
15
When you repeat the word "privilege" over and over, and let's not delude ourselves, the word has become a pejorative, you overlook their hard work.
You didn't mention the ambition and tenacity necessary to complete a challenging degree and start a business. You didn't mention the achievements that led to their financial prosperity. Just that word again.
You didn't mention the ambition and tenacity necessary to complete a challenging degree and start a business. You didn't mention the achievements that led to their financial prosperity. Just that word again.
4
Thanks to the wonderful Times writers and to the family who were so thoughtful and generous to share their story with us.
Fortunately, Humans seem unable to give up hope.
Fortunately, Humans seem unable to give up hope.
3
There is nothing better than a cancer story with a happier ending - no one can predict any outcome, any time in life in general, I know this unlucky lucky family will seize life every day. The cancer lottery affects everyone, and as you can guess my family was mostly unlucky; let's throw more research money at it instead of at useless campaigns for elected office.
8
This article reeks of 1%er privilege and entitlement. Conditions that would bankrupt most American families never seem to be a problem here.
21
If that is what you take away from this you have a problem.
6
Absolutely right. And NONE of the top medical places in the country accept ACA exchange policies.
1
Human suffering is human suffering, regardless. But that 1% thought did occur to me. Many families would have been financially devastated and the time off from work to attend the sick child, the other children, would have been nonexistent.
18
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.
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.
252
I don't often cry. This story made me cry. Not the part about his becoming ill, the part when the cancer disappeared.
5
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.
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.
585
"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."
Yes, and this goes along with Esther's idea that, "She had always felt in control of her fate, but now she believes this to be a fiction."
In both cases though, you parents reached down to your cores in making decisions. That is one thing everyone can do. It seems key.
Yes, and this goes along with Esther's idea that, "She had always felt in control of her fate, but now she believes this to be a fiction."
In both cases though, you parents reached down to your cores in making decisions. That is one thing everyone can do. It seems key.
4
I am so sorry for the loss of your little boy. Your words here are powerful and heartbreaking and beautiful. I hope his memory is blessing, even as I am sure it must continue to be hard.
In terms of biliary atresia- our dear friends' 18 month old is recovering rapidly from the liver transplant that is saving her life. The medical treatments have indeed come a long way. No consolation, I know, for the loss of your Will, but perhaps some knowing that other families have much to hope for and rely on now.
Wishing you happiness, too...
In terms of biliary atresia- our dear friends' 18 month old is recovering rapidly from the liver transplant that is saving her life. The medical treatments have indeed come a long way. No consolation, I know, for the loss of your Will, but perhaps some knowing that other families have much to hope for and rely on now.
Wishing you happiness, too...
2
I'm so sorry for your loss.
2
Tells you what being human is all about. Love has no boundaries.
77
Were it so easy that love could cure cancer. . . I can tell you, it does not.
3
This article confirms my opinion about the "science" of medicine, also referred to as "medical practice". It is just that... "practice".
All the best to the Levy family. You are all wonderful people!
All the best to the Levy family. You are all wonderful people!
6
I believe your son's journey reveals energies this the world; time and space to heal in a garden, the certain condition of fierce love all around. Healing happens in mind, body and spirit. What forces are unleashed when we let go of human understanding may save us all.
5
What a wonderful story, one with many lessons.
Did the love and dedication of the Levy's play a role? Of course it did - this question is hardly worth asking.
And, perhaps, getting Andrew out of the hospital and into his home helped as well. There is a role for hospitals in health care of course, but often they are not good places, and the home is far better. One wishes more insurance plans, both public and private, would construct their benefits to recognize this, and provide more support for home care.
Are there limits to what doctors and scientists know about cancer and its treatment? This is also a no-brainer - just about every physician and researcher on the planet knows that there is far more we don't know than what we do about disease and its treatment.
And luck and fortune matter all too much.
So many cases of leukemia and other cancers have less favorable outcomes than in this story. Perhaps if society supported medical research with the same enthusiasm we support the National Football League, rock stars, and hedge fund managers, we would progress more rapidly in the "war" on cancer, and more stories would have happy endings.
Is there much that medicine and science
Did the love and dedication of the Levy's play a role? Of course it did - this question is hardly worth asking.
And, perhaps, getting Andrew out of the hospital and into his home helped as well. There is a role for hospitals in health care of course, but often they are not good places, and the home is far better. One wishes more insurance plans, both public and private, would construct their benefits to recognize this, and provide more support for home care.
Are there limits to what doctors and scientists know about cancer and its treatment? This is also a no-brainer - just about every physician and researcher on the planet knows that there is far more we don't know than what we do about disease and its treatment.
And luck and fortune matter all too much.
So many cases of leukemia and other cancers have less favorable outcomes than in this story. Perhaps if society supported medical research with the same enthusiasm we support the National Football League, rock stars, and hedge fund managers, we would progress more rapidly in the "war" on cancer, and more stories would have happy endings.
Is there much that medicine and science
7
And perhaps if we cleaned up our environment (which doesn't require any research), got rid of toxic chemicals in our food, our cosmetics, our cleaning supplies, our couches and mattresses.... if we got rid of junk food, and had more time to lie on the grass and listen to the birds sing and the trees sway in the breeze, our cancer rates would go down to where they were 100 years ago and we wouldn't need to spend so much money on research and treatment.
2
As a mother via IVF on the 4th try, I can understand Esther's loss of a sense of safety and hope, despite her family's incredible good fortune in Andrew's most unexpected survival. It is devastating to one's sense of free-will and optimism to have such terribly punishing and heartbreaking things happen. One does not quickly recover from these blows, no matter how grateful for the respite and ultimate victory.
But I can also say from experience (5 years after my son's birth) that, assuming Andrew's recovery is sustained (which we all wish most ardently for), time will eventually allow some healing of the sense of empowerment over one's life. It is critically important, however, whenever it feels possible again to do so, to reach for that optimism and to begin to stretch one's ability to trust that things will, more often than not, turn out okay.
But I can also say from experience (5 years after my son's birth) that, assuming Andrew's recovery is sustained (which we all wish most ardently for), time will eventually allow some healing of the sense of empowerment over one's life. It is critically important, however, whenever it feels possible again to do so, to reach for that optimism and to begin to stretch one's ability to trust that things will, more often than not, turn out okay.
12
I read this article with such sympathy for the Levy family. But, oh, I worry for Esther Levy. The strain of trying to cope with her dying child didn't break her, but it seems as if the release and the relief just might.
So all my good wishes and prayers go to her, mother to mother, for the strength to be able to believe in peace again.
So all my good wishes and prayers go to her, mother to mother, for the strength to be able to believe in peace again.
21
May he grow and flourish!
5
When Do You Give Up on Treating a Child With Cancer? In the South Bronx, immediately: when it is not diagnosed.
18
this is simply not true. for pediatrics no child in NYC needs to go without care. US citizen or not under 18--all eligible for Medicaid or Medicaid HMO programs -under child health plus-- which are accepted by the major unioversity hospitals in the Bronx and NYC.
4
Being a parent I could only have empathy for what the family went through and how they are irrevocably changed by it.
But I also can't help thinking of the many families that do not have the financial resources who will not have this kind of 'miracle' story. Their pain is just as deep but with fewer choices. Being unable to provide all that could be available is a horror to a parent beyond imagining.
Medical science is beginning to make miracles but should it only be for those who can afford it?
But I also can't help thinking of the many families that do not have the financial resources who will not have this kind of 'miracle' story. Their pain is just as deep but with fewer choices. Being unable to provide all that could be available is a horror to a parent beyond imagining.
Medical science is beginning to make miracles but should it only be for those who can afford it?
55
Thanks for asking that question. Looking at the pictures and reading the place names in this piece provided some seriously important information: these are people of means. While we applaud the scientists who made this miracle possible, let's also work harder to ensure that little kids in Harlem or East L.A. or Oakland are also able to benefit from everything modern medicine has to offer. Disparities in health outcomes directly reflect economic and social disparities. That may be the biggest tragedy of all.
18
Medicine has changed since the days when doctors had few tools or little knowledge. A midwife or medicine woman was sometimes a better alternative. A chicken would often pay the bill.
Today, science understands so much and have numerous expensive tools, transplants, heart bypasses, medicines, diagnostic tools, the list is long, but these options can be just as far out of reach as the moon for many people. Society through government grants and subsidies have developed all these miracles. It should be accessible to everyone because we have a human obligation but also we have all contributed through our taxes to modern medicine, the education of doctors and the medical facilities.
Today, science understands so much and have numerous expensive tools, transplants, heart bypasses, medicines, diagnostic tools, the list is long, but these options can be just as far out of reach as the moon for many people. Society through government grants and subsidies have developed all these miracles. It should be accessible to everyone because we have a human obligation but also we have all contributed through our taxes to modern medicine, the education of doctors and the medical facilities.
1
It is wonderful to have read this; I share the heartfelt admiration for Esther and Dan Levy that has been expressed by others.
I hope the author or someone will write about the aftermath of this story from the perspecWive of the physicians. What are the questions they are left with, what do they speculate might be the answers, and what are the patterns in patients and treatments of similar that they are searching for, in hope of discovering answers that may advance efforts to treat the same or similar diseases?
I hope the author or someone will write about the aftermath of this story from the perspecWive of the physicians. What are the questions they are left with, what do they speculate might be the answers, and what are the patterns in patients and treatments of similar that they are searching for, in hope of discovering answers that may advance efforts to treat the same or similar diseases?
1
It is extremely difficult to extrapolate anything from a single patient. Any number of variables could have played into this - and the limited contact they had with physicians probably limited the amount of "hard" data they have on exactly what happened. The infection itself could have contributed to the remission, through inducing immunogenic cell death in the cancerous cells - or there may not have even been an infection, just a prolonged cytokine storm as the new immune system battled the entrenched cancer. Undoubtedly, the "exact" match of his brother was a lucky break, it doesn't seem like he had harsh graft vs. host responses, which is what the doctors were worried about pulling him off immunosuppressants.
This is a great story, but I'm not sure that the success here is an indication that there might be an easy tweak that will result in reproducible results for others. It is more an example of how powerful immunotherapy can be when everything lines up, there is still a long road to learning just what has to line up and how to line it up though.
This is a great story, but I'm not sure that the success here is an indication that there might be an easy tweak that will result in reproducible results for others. It is more an example of how powerful immunotherapy can be when everything lines up, there is still a long road to learning just what has to line up and how to line it up though.
4
Thank you for this moving story. I'm proud of Stanford, my alma mater.
2
This is an astonishing glimpse into the power of medically harnessing the body's immune system to do its job: Will's transplanted cells, an opportunistic infection, and the family's decision to avoid the second chemo treatment all came together. This is an encouragement to using immunotherapy.
12
My joy lies in the Levi's loving family and Andrews recovery.
My hope lies in leveraging the newly gained knowledge to improved outcomes for other patients in the future.
My fear lies in the agenda of some who will look at a case of 1 and say "Medicine failed, it was love and faith" then argue against science as a continually improving understanding of our universe.
My hope lies in leveraging the newly gained knowledge to improved outcomes for other patients in the future.
My fear lies in the agenda of some who will look at a case of 1 and say "Medicine failed, it was love and faith" then argue against science as a continually improving understanding of our universe.
9
I don't think we understand the class of disease we call cancer.
What if, "cancer" is some sort of developmental phase in cell life, which resolves itself over time, without treatment, in some circumstances.
Something in the brain and brain chemistry direct one sort of cellular development at one time, then for some reason, another sort of cellular development at another time.
There is so much money poured into treatment of cancer, but far too little spent understanding the causes, the conditions, which facilitate cancer, or undermine its development and growth.
What if, "cancer" is some sort of developmental phase in cell life, which resolves itself over time, without treatment, in some circumstances.
Something in the brain and brain chemistry direct one sort of cellular development at one time, then for some reason, another sort of cellular development at another time.
There is so much money poured into treatment of cancer, but far too little spent understanding the causes, the conditions, which facilitate cancer, or undermine its development and growth.
4
Have you reviewed the cancer research literature and decided that there is not enough research about the causes? Of course they are researching causes
It is known for long that spontaneous remissions in cancer often if not most of the time are preceded by a hefty feverish infection (see wikipedia spontaneous regression). Also, there is a hypothesis about the immunological mechanism. This is, alas, hardly known in medical circles and we are only at the beginning to propagate this into a clinical study.
11
I appreciate and admire the honesty of this mother. She is my newest hero for sharing the raw details of how she and her husband came to say no to further treatment for their child. I also find comfort in this story as I recently had to tell doctors to stop treatment for my 88-year-old mother. I recognize the difference between our decisions of course, theirs was unnatural while mine was expected. Still, I have second guessed my decision. Now, perhaps selfishly, I feel after reading about the Levy's brutal choice, my struggle has eased. I hope it works in reverse, that through the sharing of this story, their struggle, too, will be eased.
35
Mary, I am a six-year ovarian cancer patient who has been in and out of treatment. I'm only 58 and attribute my positive attitude as a big factor in making it this far. That said, no way would I go through treatment at 88. You are doing your mother a favor. Let her live her remaining time in peace. Best wishes.
And best wishes to the Levy family; I can't imagine watching my child go through that ...
And best wishes to the Levy family; I can't imagine watching my child go through that ...
MIRACLE With a Message. I wish the Levy family the best of luck going forward. What defenses in Andrew's body allowed him to develop resistance to the cancer? Was it T cells or other cells that had been trained to attack the specific cancer during the treatment. Or cells in the sibling's donated marrow that provided the boost? Perhaps studying the question could produce some helpful answers. Meanwhile, I wish the entire family healing of the soul and body as they go from strength to strength. For I believe that our lives are dependent upon going from strength to strength, as the universe also heals.
3
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.
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.
118
Thank you for opening up the subject of over treatment in Breast cancer. I've been a BC "patient" for 30 years and can't tell you what surgeries, procedures, radiation treatments, etc. have done to my life and body for a disease, DCIS, which may now be declassified as Breast cancer.
Tests are able to find minute irregular cells which could probably have existed in the body forever but now are removed, and the entire body is traumatized unnecessarily . Just because medicine can do something doesn't always mean it should
Tests are able to find minute irregular cells which could probably have existed in the body forever but now are removed, and the entire body is traumatized unnecessarily . Just because medicine can do something doesn't always mean it should
1
Perhaps the question is when to treat and when to offer the patient "watchful waiting". It would also help if doctors let patients know about side effects upfront.
1
Dear KittyKitty7555,
We, both the medical community and the lay people, know much more about "what they are doing."
Progress has been made. But, there is no free lunch and progress against cancer is inevitable.
We, the medical community, know much more about what we didn't know but have learned AND know more about what we do not know.
Because all cancers haven't been cured doesn't negate the progress that has been accomplished. Some formally fatal cancers are now treated; and the patient has a higher likelihood of recovering to a cancer-free life or living with chronic cancer that may be treated.
More people are living with or living longer with cancer than ever before. My mother has been treated for breast cancer twice separated by 35 years; and will soon turn 94. My melanoma was treated 9 years ago; it has not returned...yet. Vigilance!
Schedule regular check-ups and alert your physician / medical team for any irregularities. As appropriate, get your cancer check ups regularly. Volunteer / donate your body and its parts to the nearest medical school or other research facility, so others may benefit from your body's experiences.
As the medical community becomes more forthright and informs cancer patients (and parents) about the risks and likely outcomes, we, the non-medical community, can deal with cancer more realistically. Don't be shy, help your medical team provide full disclosure.
And, most of all, keep up your good work. Cheers, Ted
We, both the medical community and the lay people, know much more about "what they are doing."
Progress has been made. But, there is no free lunch and progress against cancer is inevitable.
We, the medical community, know much more about what we didn't know but have learned AND know more about what we do not know.
Because all cancers haven't been cured doesn't negate the progress that has been accomplished. Some formally fatal cancers are now treated; and the patient has a higher likelihood of recovering to a cancer-free life or living with chronic cancer that may be treated.
More people are living with or living longer with cancer than ever before. My mother has been treated for breast cancer twice separated by 35 years; and will soon turn 94. My melanoma was treated 9 years ago; it has not returned...yet. Vigilance!
Schedule regular check-ups and alert your physician / medical team for any irregularities. As appropriate, get your cancer check ups regularly. Volunteer / donate your body and its parts to the nearest medical school or other research facility, so others may benefit from your body's experiences.
As the medical community becomes more forthright and informs cancer patients (and parents) about the risks and likely outcomes, we, the non-medical community, can deal with cancer more realistically. Don't be shy, help your medical team provide full disclosure.
And, most of all, keep up your good work. Cheers, Ted
3
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.
393
It's a matter of semantics.
3
"There is ALWAYS hope."
True enough, but that which is hoped for can and does change dramatically.
In this scenario, from "I hope he pulls through," to "I hope he passes peacefully."
True enough, but that which is hoped for can and does change dramatically.
In this scenario, from "I hope he pulls through," to "I hope he passes peacefully."
4
thanks indeed this is true. three is never "no more to do" there is always care
1
Speaking from experience, you NEVER EVER give up. Ever. Regardless.
4
But that's YOUR experience and philosophy, Annabelle. You missed the whole point.
1
I hate to be Debbie downer but how many people get this kind of treatment for their sick child? We spend billions keeping 90 year olds alive but far too often resources are limited for our children. Trust me the money dedicated to geriatric care far exceeds pediatric and it's nauseating to witness. Still it's always awesome to see a young child beat the odds.
11
OK. I'm reading through this, and am struck by the amount of time that needs to be spent convincing us that this family is one of those families that never had anything "bad happen to it." They're the charmed ones. This point is made several times. OK. That's the framing. So apparently we're to put this bad news into that context and understand that we're dealing with some special people, some people for whom things don't go wrong. Now we're set up to process the bad news.
Enough already. It's like this paper is only written for these people -- good jobs at Facebook, no problems, and now a problem, and we're to cry a river. And now a miracle. So is the NYT trying to write cheesy Hollywood movies now? And this is the front page? Ugh, I am hating this paper more and more. I had to stop reading.
Enough already. It's like this paper is only written for these people -- good jobs at Facebook, no problems, and now a problem, and we're to cry a river. And now a miracle. So is the NYT trying to write cheesy Hollywood movies now? And this is the front page? Ugh, I am hating this paper more and more. I had to stop reading.
9
I have a son, now 22, who has had two bone marrow transplants for childhood leukemia. ALL, the first at age seven and the second at age fifteen. Don't tell me ALL is "largely curable" and don't tell me that five years after a transplant the patient is cured. I saw a great many kids who had ALL and died. The official statistic is something like 70% are considered cured, but then, the statistics would show my kid was cured, even as he relapsed eight years after his first transplant.
My focus through it all was like Dan's--that the family might persevere, no matter what happened with the kid. While we focused our energies on caring for him, it was with an eye that the family would make it through somehow.
I helped during the first transplant by working all day and sleeping at the hospital every night, giving the wife time away to keep up with our daughter so her life would continue as normally as possible. During the second transplant, I was the primary caregiver--the wife had gone back to work by then--and spent my days and nights in the hospital. We managed.
I get where the Levy's are today, and why they refused the second transplant. It gets easier with each passing day. But my son shouldn't much worry over getting leukemia again because he got GVHD with the second transplant, which is good, because there is only palliative care from here on out if he does. So I tell him, go and live. He just graduated from college Saturday.
My focus through it all was like Dan's--that the family might persevere, no matter what happened with the kid. While we focused our energies on caring for him, it was with an eye that the family would make it through somehow.
I helped during the first transplant by working all day and sleeping at the hospital every night, giving the wife time away to keep up with our daughter so her life would continue as normally as possible. During the second transplant, I was the primary caregiver--the wife had gone back to work by then--and spent my days and nights in the hospital. We managed.
I get where the Levy's are today, and why they refused the second transplant. It gets easier with each passing day. But my son shouldn't much worry over getting leukemia again because he got GVHD with the second transplant, which is good, because there is only palliative care from here on out if he does. So I tell him, go and live. He just graduated from college Saturday.
13
May God protect Andrew always.
3
Its amazing how much we don't know what we don't know. However, to get this sort of care is rare because its so expensive. Maybe Andrew's gift will be to one day open up medical care to all who need it, not just to those who can afford it (unless Bernie does it first :))
3
Amazingly resilient family that demonstrated courage in the face of the unknown and challenges that most of us will never understand. The immune system is an awesome and complicated defense system that never ceases to amaze me.
6
Years ago, while a trainee at a well-known medical center, I had a patient who we thought had cancer that had spread to his brain. His family chose "comfort care" and went home. It turned out that the "comfort care" we prescribed, which wasn't chemotherapy, actually contained the cocktail of medications that he needed to defeat this condition. I can only imagine what the family went through as they prepared for their son to die, and then realized he was going to make a full recovery, similar to what the Levys just went through.
I got a peer-reviewed publication out of the experience, so according to academia I was able to help advance our understanding of medical care a little bit. However, this article about the Levys so beautifully illustrates how much we still don't know and may never completely understand. The medical literature is all about the odds of treatment success, but for your own child, it's all or nothing. The Levys did the smartest and bravest thing I think we can advise as health care professionals: they pursued and considered the best possible options, then made the right decision for themselves and prepared accordingly. I hope they received unconditional support from their providers because I know that doesn't always happen.
I also hope Andrew grows up and stays strong, but no matter what happens, he and his family have taught us and made the world a better place.
I got a peer-reviewed publication out of the experience, so according to academia I was able to help advance our understanding of medical care a little bit. However, this article about the Levys so beautifully illustrates how much we still don't know and may never completely understand. The medical literature is all about the odds of treatment success, but for your own child, it's all or nothing. The Levys did the smartest and bravest thing I think we can advise as health care professionals: they pursued and considered the best possible options, then made the right decision for themselves and prepared accordingly. I hope they received unconditional support from their providers because I know that doesn't always happen.
I also hope Andrew grows up and stays strong, but no matter what happens, he and his family have taught us and made the world a better place.
11
It is very interesting that Michael Loken has been tracking 19 other children with this tumor marker and 2 are alive 3 years after diagnosis - clearly the medical team knew the statistics and appropriately advised Andrew's family. The expected outcome in his case was death - as per the other 17 of 19 children. If this article had been written better, instead of in the tabloid, gee-whiz style of the neophyte writer, we would have learned a lot more about the statistical bedrock of medicine. As for Andrew's little spurts of energy - anyone on a hospice team will tell you that dying patients get these, particularly in the 24 hours prior to death - so nothing unusual there in a person thought to be dying. I wish we could return to the days when the NY Times had great journalists reporting facts and news, rather than the poor writing and "blog" entries that pass for articles now. There is much more to this story - but we won't get any facts or medical analysis from what used to be The NY Times and is now thenytimes.
7
There was huge value in this article that went beyond the statistics presented- and they were- in terms of walking in the first eps of death, parenting an ill child, the gigantic strain on their relationships.
Just because you personally have interest only in numbers does not mean the vast majority of us readers do not also value learning about more than that.
And I speak as a professor of statistics with three quantitative degrees.
Just because you personally have interest only in numbers does not mean the vast majority of us readers do not also value learning about more than that.
And I speak as a professor of statistics with three quantitative degrees.
10
As a hospice social worker/clergy I have to disagree with your assessment.
First of all to insult the newspaper, the writer and the photographer because the article did not use quantifying data is to miss its purpose entirely.
Second, we are all overly data driven in our world. This includes the medical profession, which as witnessed in these comments struggles daily with the issue of balancing love and attachment with providing statistically appropriate care. To lean more heavily on the side of statistical accuracy distort the balance of life and death.
Please take a deep breath, LuckyDog, look in the mirror and count your blessings. For me, anyway, the most significant life decisions I've made or have helped others make have been more heart and hope than data.
First of all to insult the newspaper, the writer and the photographer because the article did not use quantifying data is to miss its purpose entirely.
Second, we are all overly data driven in our world. This includes the medical profession, which as witnessed in these comments struggles daily with the issue of balancing love and attachment with providing statistically appropriate care. To lean more heavily on the side of statistical accuracy distort the balance of life and death.
Please take a deep breath, LuckyDog, look in the mirror and count your blessings. For me, anyway, the most significant life decisions I've made or have helped others make have been more heart and hope than data.
1
My personal interests are not relevant to the discussion. What is clear is that the data is not fairly presented - and someone with experience in presenting data should be calling for fair presentation. The fact that the story is poorly written has come to be the usual case for the NY Times - and not letting them know that we recognize poor quality prevents them from taking steps to improve. My motives are aimed at improving public discourse, not hiding lack of quality in content and presentation under barrels of emotion.
1
What a great example of the unique bond between families of patients with pediatric cancer and their doctors. As a pediatric oncology fellow, I have seen first hand the struggle to accept death while also fighting for life, and this illustrates how it's very hard to tell a family "there is no hope." On the other hand, children can and do suffer from "futile" treatments just because we feel we need to "do something." This is why the job is so rewarding and so difficult.
5
Compassion is the antidote to uncertianty. Feeling worthy of love despite being broken is a powerful healing tool.
Well done, Levys.
Well done, Levys.
8
After having a cancer, I thought about seeking ways to increase my own immunity.
- A lung specialist had told me to take Zinc (15 mg/day) and Selenium
(200 mcg/day).
- Then I heard the interesting story of Agaricus Blazei Mushroom (Swanson Vitamins), 2x/day - and how one who was taking it, while having multiple myeloma, had already lived for 12 years. (At the time, a multiple myeloma
diagnosis was thought to suggest a patient had three years to live.) His
doctor had told him it was better than any drug he had or any which was in
the "pipeline" at the time.
This story has inspired me to search further for immunity enhancing
tweaks for one's regimen.
- A lung specialist had told me to take Zinc (15 mg/day) and Selenium
(200 mcg/day).
- Then I heard the interesting story of Agaricus Blazei Mushroom (Swanson Vitamins), 2x/day - and how one who was taking it, while having multiple myeloma, had already lived for 12 years. (At the time, a multiple myeloma
diagnosis was thought to suggest a patient had three years to live.) His
doctor had told him it was better than any drug he had or any which was in
the "pipeline" at the time.
This story has inspired me to search further for immunity enhancing
tweaks for one's regimen.
3
What a gift Andrew has given us to be reminded to celebrate and participate deeply in the truth of our lives and to recognize the power of intuition. As a cancer survivor, I can confirm that once your ticket has been punched, you can't go back to the old way of living. Many blessings to Andrew, his doctors and family. What a gift.
8
Cancer is the only disease that as more is learned it becomes more difficult to treat... This story perfectly represents how limited we are by how much we know and also don't know about Cancer. Most of our treatments are still really just extended, large-scale trials. We hypothesize why the successful treatments work but we still have not proven why.
Even with all the advancements of the last century, the billions and billions and billions of dollars spent, and the thousands of brilliant minds working towards cures, the most miraculous recoveries (that happen everyday somewhere) are at least unexpected and often complete accidents.
Even with all the advancements of the last century, the billions and billions and billions of dollars spent, and the thousands of brilliant minds working towards cures, the most miraculous recoveries (that happen everyday somewhere) are at least unexpected and often complete accidents.
4
There was never anything "wrong" with Andrew. The cancer, the crisis, the tension, the struggle, the cure, the relief, the celebration all happened in the minds of the parents.
The question of "giving up" doesn't even arise because the only thing you'd be "giving up" is the false idea that you can micromanage these things in the first place.
But letting go, yes, that can be done. You can let go of expectations that the future will look like this or that. You can accept life as it comes, do your best and accept the results.
Pain is a normal part of life. Suffering is self-created.
The question of "giving up" doesn't even arise because the only thing you'd be "giving up" is the false idea that you can micromanage these things in the first place.
But letting go, yes, that can be done. You can let go of expectations that the future will look like this or that. You can accept life as it comes, do your best and accept the results.
Pain is a normal part of life. Suffering is self-created.
6
Just what they need, a lecture.
8
@Cow - You can go on believing that there was never anything "wrong" with a rare and deadly cancer in a small child. I am going to go on considering it a problem that I would want to aggressively address. There is a huge difference between trying and then recognizing that there is little more to be done to save a life, and "the false idea that you can micromanage these things in the first place."
"Pain is a normal part of life. Suffering is self-created" is the least empathetic statement I have ever heard aimed at the parent of dying child.
"Pain is a normal part of life. Suffering is self-created" is the least empathetic statement I have ever heard aimed at the parent of dying child.
15
Yes, the majority will see what I've said as un-empathetic. While one is fighting and appears to be winning, the arrogance of victory will cloud one's judgment.
When you've suffered enough that you finally realize surrender is the only option, then you'll see the wisdom in those words.
When you've suffered enough that you finally realize surrender is the only option, then you'll see the wisdom in those words.
Wow. It truly is a miracle that Andrew recovered - I wish him a long and happy life. But to me, what his parents did is beyond the pale. Maybe I'm influenced by having had many family members suffer from cancer, but I think it's different for a child, whose bodies and immune systems are more flexible and resilient than ours: the end of the article reveals that 3/19 children with roughly his medical profile ended up healthy and cancer free. Those are long odds for sure, but are they the odds that make it logical to put a child in hospice care? I think the point abt how this family had suffered no adversity is prescient: their decisionmaking in a time of crisis reflected a lot of inexperience.
1
Beautiful story. Had me in tears. I do wonder though if this family didn't have the means to do so would the outcome still be the same? How accessible are those treatments?
3
At 3 years old my brother developed a very visible tumor behind his eye. My parents were told he would lose his eye and it could be even worse. They held out on the operation, looking for any other diagnosis or prognosis, and just hoped and prayed. Me and my siblings would hide and cry, fearful of upsetting our parents, or our brother. And then one day, as my parents were getting ready to confront reality, it just disappeared. He got better. There was no other explanation than it was a miracle. My brother is now in his 20's and very healthy with perfect vision and no memory of that time at all. Sometimes miracles just happen. No other explanation. And I'm very thankful they do.
5
What a great story. Had me in tears.
Ms. Thernstrom, please update us in 9 months! Good luck Andrew!
3
I am currently a lymphoma cancer patient. I live in constant fear and constant hope. The two are inseparable. My kind of lymphoma is incurable but manageable. Will it get bad again? Yes. When, I do not know. I take each day as a gift and do what I can that day.
When the day comes when we (medical team and spouse) run out of options I want to be able to say I gave it my best shot and lived life to the fullest...then go quietly.
I hope that day is far off in the future, but I don't really know. None of us do.
When the day comes when we (medical team and spouse) run out of options I want to be able to say I gave it my best shot and lived life to the fullest...then go quietly.
I hope that day is far off in the future, but I don't really know. None of us do.
1
No one wants to be told how to feel. Listen and offer support through helping with the household tasks, cooking, babysitting, mowing the lawn--just whatever needs to be done. You can never know what someone is feeling about their cancer experience and whatever they are feeling is perfectly fine.
2
I needed this story.
1
Like so many readers, I am overwhelmed by this story.
As a cynic, I am overwhelmed by the number of people who do not have a living will, nor any written document expressing their desire to die with indignity, as painlessly, as possible, who refuse tubes and machines to prolong a life of quantity, rather than quality.
Andrew had no knowledge of what his choices were. His parents did, and chose what they thought best for him.
But there is no excuse for adults who prolong the inevitable and in doing so, extend the pain of their loved ones.
As a cynic, I am overwhelmed by the number of people who do not have a living will, nor any written document expressing their desire to die with indignity, as painlessly, as possible, who refuse tubes and machines to prolong a life of quantity, rather than quality.
Andrew had no knowledge of what his choices were. His parents did, and chose what they thought best for him.
But there is no excuse for adults who prolong the inevitable and in doing so, extend the pain of their loved ones.
2
I could think of nothing harder to deal with than a terminally sick child. I have two children and I don't believe I could be as strong as the Levy's. I wish nothing but happiness for the entire family for the rest of their lives.
2
This is an amazing story, and I cannot imagine what this family has been through and will continue to go through. It is not the first time I have read of an infection being linked with recovery or halting of cancer, and I wonder if some day, a therapeutic infection will be developed and prescribed. Very tricky to carry out, of course. For anyone who is interested in this idea, a recent issue of Discover Magazine profiled a doctor who was practicing a crude form of immunotherapy, injecting bacteria into tumors, in the late 1800s:
http://discovermagazine.com/2016/april/11-germ-of-an-idea
Sending good thoughts to Andrew and his family. May he grow up and live a happy life.
http://discovermagazine.com/2016/april/11-germ-of-an-idea
Sending good thoughts to Andrew and his family. May he grow up and live a happy life.
This story is heart-breaking, but an answer may lie in a single question: "Am I prolonging life or prolonging death?" Of course, the answer to that question is not an easy one, and different people with different doctors may come to a different conclusion in very similar circumstances. But, that is the ultimate question because no one who is suffering and without rational hope of recovery should be deprived of the rest and peace that death will bring. It will come to us all and, for most, sooner than we desire. But, it will come.
6
When my late wife was diagnosed with terminal cancer in 2002 we tried everything: chemo twice, 6 weeks of radiation plus all the hocuspocus stuff that you can find. In the end nothing helped her. But we kept hoping for a miracle cure, which, according to stats in Germany, occurs about once in a million cases. Good for you, little fella!
8
Yes, a true miracle. But, if the miracle has a scientific explanation, so much the better, as it can eventually be replicated. The article asserts that doctors theorized that perhaps the infection following chemotherapy triggered a huge increase in Andrew's own immune system, thereby wiping out the traces of cancer. Of course, this is just informed speculation on their part, but if they (or others) can run with this idea and see if it works in others, that will be an even greater miracle: one miracle multiplied by hundreds, if not thousands.
I wish Andrew the best of luck, and applaud their parents in navigating that most awful of roads.
I wish Andrew the best of luck, and applaud their parents in navigating that most awful of roads.
2
"The luckiest of the unlucky" should be the title of this piece. The complex and often conflicting emotions honestly expressed by the mother affected me. I have not been in her shoes, but as a pediatrician, I have witnessed much child suffering. I remember thinking during my oncology rotation in the bone marrow transplant unit that I didn't know what I would do if I had to be the mother making those decisions. I still don't. Thankfully there are doctors, nurses and researchers whose work continues to tip the balance in favor of bone marrow transplants as the successes increase and the complications decrease, but it is still a terrifying and often painful process. I hope that Andrew continues to thrive.
I would like to offer up one thought to Andrew's parents. Of the many feelings that Andrew's parents may have is one of guilt or regret in missing out on some of the siblings' childhood experiences. I had a brother who died when I was a toddler and I think my mother lived on the periphery of mine and my siblings' lives for many years as she grieved. What stays with me now is not regret or remembering her absences, but that I always felt the profound love she had for us.
I would like to offer up one thought to Andrew's parents. Of the many feelings that Andrew's parents may have is one of guilt or regret in missing out on some of the siblings' childhood experiences. I had a brother who died when I was a toddler and I think my mother lived on the periphery of mine and my siblings' lives for many years as she grieved. What stays with me now is not regret or remembering her absences, but that I always felt the profound love she had for us.
14
May your family's life be full of joy, and hope, all the days of your lives.
It filled me with hope, reading such an extraordinary story on the resilience of you, and your family.
I worked daily alongside children, of all ages, infancy through their teens, saw many survie, and many pass on, and saw the incredible fortitude in their parents and relatives, in the face of what I called a living nightmare, one they awoke to every day.
The place was Ronald McDonald House New York, the "Home away from Home", for these angels.
Equally heartening was the the strength of the staff, as they sought to help in some way, knowing that for many, no amount of help would stop the inevitable.
We are an amazing species, sometimes awful to behold, but generally we are a caring empathetic group, helping each other survive.
May God continue to bless you, and yours.
It filled me with hope, reading such an extraordinary story on the resilience of you, and your family.
I worked daily alongside children, of all ages, infancy through their teens, saw many survie, and many pass on, and saw the incredible fortitude in their parents and relatives, in the face of what I called a living nightmare, one they awoke to every day.
The place was Ronald McDonald House New York, the "Home away from Home", for these angels.
Equally heartening was the the strength of the staff, as they sought to help in some way, knowing that for many, no amount of help would stop the inevitable.
We are an amazing species, sometimes awful to behold, but generally we are a caring empathetic group, helping each other survive.
May God continue to bless you, and yours.
5
What a heart-warming story! I myself believe that Lea's "pieces of love" worked the Miracle!
Thank you so much for this! We too are in the midst of a different medical situation. Though my spouse is nearly 77 with a progressive lung condition, we have decided that quality of life over-rides potential lengthening of life, were he to take an expensive medication with really bad side-effects.
I applaud these parents for the decision to keep the family together, for the wonderful way in which they told their other children of the expected death of Andrew.
May you all be richly blessed! May all families face death squarely, calmly, together. Sometimes with miracles!
Thank you so much for this! We too are in the midst of a different medical situation. Though my spouse is nearly 77 with a progressive lung condition, we have decided that quality of life over-rides potential lengthening of life, were he to take an expensive medication with really bad side-effects.
I applaud these parents for the decision to keep the family together, for the wonderful way in which they told their other children of the expected death of Andrew.
May you all be richly blessed! May all families face death squarely, calmly, together. Sometimes with miracles!
Quite a few years ago, I read a book called "Commotion in the Blood". In the beginning of the book it described a doctor who would go to poor neighborhoods to do charity work. One of his patients was an Irish laborer who had cancerous tumors all over his body. He knew it was only a matter of time before the man died. The case was hopeless. At the same time the man developed an infection with extremely high fevers. Since this was the turn of the 20th century there were no antibiotics. He was sure at this point the infection and fever would take the man's life before the cancer. However the fever finally broke. The laborer's own constitution had killed the infection.
As the doctor made repeated visits he noticed something peculiar. The tumors all over the man's body which had always been hard began to soften. After a while these tumors began to break up and eventually dissipate completely. The doctor, William Coley, realized that something in the man's blood had destroyed the cancer. A "commotion". I read this book 20 or so years ago, so some of the details remain a little foggy but it was recognized almost a hundred years ago by some that cancers defeat will ultimately lie within ourselves. We may be on the cusp of defeating this wily enemy in our own bodies with immunotherapy but only time will tell. But this story seems to indicate that then, as now, the key to the defeat of the "emperor of all maladies" is us.
As the doctor made repeated visits he noticed something peculiar. The tumors all over the man's body which had always been hard began to soften. After a while these tumors began to break up and eventually dissipate completely. The doctor, William Coley, realized that something in the man's blood had destroyed the cancer. A "commotion". I read this book 20 or so years ago, so some of the details remain a little foggy but it was recognized almost a hundred years ago by some that cancers defeat will ultimately lie within ourselves. We may be on the cusp of defeating this wily enemy in our own bodies with immunotherapy but only time will tell. But this story seems to indicate that then, as now, the key to the defeat of the "emperor of all maladies" is us.
1
Kevin Murray's comments were so insightful/insightful to me. Having survived lymphoma twice with the first occurrence at age 36, then again at age 47, I have some experiential knowledge. I am old now; age 76. For me, that is old. I never wanted longevity, only quality and find it ironic that I am still alive. My original motive for wanting to live at age 36, when my doctor told me I probably was going to die with the year, was to survive to raise my child who was 6 at the time. He was adopted and I loved him and felt responsible. The minute the doctor told me the somber news, I had a feeling that I certainly was not going to die. I was not a religious person, though I went to church and knew the teachings of the Bible. It was such a strong sense that I could not explain, but I believed... . I, matter of factly said to my doctor, "I am not going to die now, maybe when my child is 18." Then, I got up and walked out and said over my shoulder, "I have to be alone. I will call you." I have searched for answers all these years in between; I have some, but not enough... . My life was the blueprint I mentally drew before I got sick and for many years I was felt bitter. Even though I was an independent thinker I used people to do things for me that I did not want to do. I don't do that anymore... . I was a dilettante; just played at life... . I am pleased that Andrew is doing well.
1
Your article literally made me cry. The mixture of pain, joy,back and forth would have torn apart a lesser couple. Keep treasuring every moment. No one knows what tomorrow will bring. I have to go hug my wife now.
Another click bait article, giving credence to superstition, false hope to the afflicted and another kick in the pants to science and medicine. Can't wait for the next million comments bemoaning the lack of decent journalism and the dumbing down of America. Thanks, NYT!!!
1
We can never know those who survived cancer that was undiagnosed and thus untreated. We only know those who were diagnosed and treated, either as a hopeless case or in a manner deemed medically appropriate. Perhaps the former did better than the latter. Perhaps not knowing is better than the treatments we have created thus far.
This is a huge topic. How can we limit it to just one child? How can we justify this person lives, this person dies because of of their financial status? How do we decide when old people are to die? How do we justify spending everything someone worked for their entire life on the last 3 months of their life's care and hospital bills? HOW?
It is up to each individual to come to grips with their own mortality. Grow up, stop wanting it to be easy. "...Make the choices that help society, not just one person..." Those are huge words. And we will each have to make that decision unless we are very, very lucky.
It is up to each individual to come to grips with their own mortality. Grow up, stop wanting it to be easy. "...Make the choices that help society, not just one person..." Those are huge words. And we will each have to make that decision unless we are very, very lucky.
I want to thank the Levys for sharing their story and how they coped with the un-copable. I am hopeful their story will help other kids through the medical insight it offers and other families who are faced with the same impossible choices. My heart is with them.
Photo makes mom in the white dress look like a ghost in the child's past. The child has just crossed the green line, and is seen between 2 green pillars. Creepy.
1
It's the power of money! Those poor kids or kids living in the war zones just died. Period.
6
Statistics are one thing, but every person is unique, as we see here. So happy for you.
1
One thing nobody recognized: the turning point, according to the article, was not a physical event, a medical procedure, or anything material. No, the turning point was the change of thought in the parents. The article says the parents changed their thought from looking for quanitity--looking to raise a child for the future--to quality, to the qualities of life. You could say their thought changed from a material to a spiritual perspective on life, at some level. Taking that a step further, you could reason that the cure came from the change of thought, the spiritualization of thought, and not from any medical procedure. That is something to consider, and could be proof of the power of thought, what many would call the power of prayer.
1
Miracles do happen and wishes do come true.
1
Thank you for sharing all of this , Esther and Dan, and I thank your parents for raising you both to be the family you are for Andrew, and Lea, and Wills.
Sometimes the improbable occurs, and some call it a "miracle."
But in most such circumstances of disease, "God takes the little angel home to be with Him" and we seem to be alright with it.
Because who wants to believe in a God that kills little children?
Which is what happens to most children in the same circumstances.
Death.
But in most such circumstances of disease, "God takes the little angel home to be with Him" and we seem to be alright with it.
Because who wants to believe in a God that kills little children?
Which is what happens to most children in the same circumstances.
Death.
2
This reminds me of the maxim "the opposite of certainty is faith" and of how hard faith truly is to experience. What could be more hellish than experiencing the visitation of such a horrible, terrible disease upon a young child -- and then experiencing the murky landscape between hope and fear? As much as we want certainty from science and medicine, we are sometimes forced to acknowledge that much of life defies rational explanation and can only be experienced through the lens of uncertainty -- or through faith. My prayers and thoughts are with Andrew, Esther, Dan, Lea, and Wills. May they find peace and joy within each day.
2
As a mom to three children, this story touched me deeply. What's remarkable is that the parents' intuition and conviction about what they felt was best for their son appears to have ultimately saved him.
It seems that the treatment for cancer can be as aggressive as the disease itself. And I see overtreatment all the time. A sister in law went through years and years of chemo (4 years) but died a horrible death anyway. It's a tricky path to navigate but making those decisions concerning one's own young child is especially heart-wrenching.
I wish the best to this child and his family. Thank you for sharing this story.
It seems that the treatment for cancer can be as aggressive as the disease itself. And I see overtreatment all the time. A sister in law went through years and years of chemo (4 years) but died a horrible death anyway. It's a tricky path to navigate but making those decisions concerning one's own young child is especially heart-wrenching.
I wish the best to this child and his family. Thank you for sharing this story.
2
Some times doctors just need to back off the unending, harmful treatments. How can you help a patient by making them perpetually sick?
1
I was crying in anticipation of another story of horrible loss, and voila. Unfortunately, not always the case. I pray for the Levy family that Andrew reaches the five year mark and they continue to be the loving, wonderful family that the writer has shared with us here.
1
The title is most unfortunate. One does not "give up" fighting cancer. One does "not pull the plug." One instead focuses, with an equal amount of zest and energy, on comfort and dignity. The latter is an extremely difficult choice that requires significant courage and fortitude. I am most happy to hear of this child's health, and I am sure all of us NYTimes readers wish him a very bright and prosperous future.
6
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.
275
Mrs. Levy gave her child everything she had. I can't help but wonder if her love didn't play a big role in this miracle.
48
It is a nice thought and she clearly loves all of her children. But please think about how this feels to parents whose children die. I assure you it is not because they were loved any less.
I admire the love and care this family has given to their child, but your statement implies that in those families where there was no miracle, perhaps there wasn't enough love. Is that what you really think?
3
This question is not restricted to children alone. In the case of cancer, or any other terminal illness, it is a question that is inevitable at a certain point.
No one questioned if the doctors made a mistake?
13
I think this is an unfair comment. The doctors here appear to be doing their best based on precedent. Life saving decisions are often subjective. This could have easily gone the other way.
And while I am not a doctor, they are in a tough spot. They are humans and humans make mistake. Who hasn't made a mistake at work? I know I have. Unfortunately for them, our society frowns, criticizes and often punishes doctors for being human.
And while I am not a doctor, they are in a tough spot. They are humans and humans make mistake. Who hasn't made a mistake at work? I know I have. Unfortunately for them, our society frowns, criticizes and often punishes doctors for being human.
2
This story had me in tears, and yet gave me a strength to not complain, take each day as a gift and handle life with a renewed sense of gratitude. I wish Andrew a full, happy, healthy life.
40
What a story. So happy for this family and their child. A mother's love and devotion! Their ultimate sacrifice and decision for quality over quantity. Good job Mama Bear!
Yet, such is the life of any family member of any cancer survivor. The prior life of innocense and freedom are washed away with the chemotherapy and patient's cancer cells. The doctors dont tell you any of that; of how the chemo affects the entire family, ripples though the house like a tidal wave leaving emotional wreckage in its path. They dont tell you how each post diagnosis blood test, doctor appointment, MRI, is a Heart of Darkness trip up the river towards fear anxiety stress and did i say fear! The only, only, medicine that works is time. Even as adults, we too need time to process, time to understand, time to reflect, time to justify, to blame, to be angry, time to heal. Hopefully the famiy gets time to move away from diagnose and treatment towards healing health and recovery. Even 6 years later I too look for that innocent laugh which reflects life love and happiness without fear. As you move towards normalcy you see the grass in a new light, the birds, the majesty of nature's balance, the great, the good, the idiocy, and the triviality in all things. Maybe, that is the gift of surviving cancer? Eventually, you see the positive side of that tidal wave which washed away everything about that 'blessed' prior existence? Was it so blessed? Did you see the good? Do yo now?
Yet, such is the life of any family member of any cancer survivor. The prior life of innocense and freedom are washed away with the chemotherapy and patient's cancer cells. The doctors dont tell you any of that; of how the chemo affects the entire family, ripples though the house like a tidal wave leaving emotional wreckage in its path. They dont tell you how each post diagnosis blood test, doctor appointment, MRI, is a Heart of Darkness trip up the river towards fear anxiety stress and did i say fear! The only, only, medicine that works is time. Even as adults, we too need time to process, time to understand, time to reflect, time to justify, to blame, to be angry, time to heal. Hopefully the famiy gets time to move away from diagnose and treatment towards healing health and recovery. Even 6 years later I too look for that innocent laugh which reflects life love and happiness without fear. As you move towards normalcy you see the grass in a new light, the birds, the majesty of nature's balance, the great, the good, the idiocy, and the triviality in all things. Maybe, that is the gift of surviving cancer? Eventually, you see the positive side of that tidal wave which washed away everything about that 'blessed' prior existence? Was it so blessed? Did you see the good? Do yo now?
27
I do believe the love showed by these parents for their child is partly responsible, in some undefined way, for their child's recovery. The power of love is profound.
26
So when children do die from these terrible illnesses, it's because their parents didn't love them enough? Or because they couldn't afford to stop working to take care of their child?
The love that shines through this story is amazing, but we need to be careful about causal assumptions.
The love that shines through this story is amazing, but we need to be careful about causal assumptions.
1
I, of course, want to endorse this sentiment, but there are way too many kids who were deeply loved and whose parents sacrificed everything and are now dead. It sounds lovely to say love saved him, but (while you didn't mean it that way, I'm sure) it's dangerously close to casting aspersions on the families of kids who didn't live.
5
So part of the reason sick children die from cancer, is that their parents didn't love them enough - that's what you're saying. What a terrible judgment to place on grieving parents.
2
Medicine is a business and not science. This article demonstrates this. I do not mean doctors are dishonest, I just mean they have little to no understanding of basic principles like the use of statistics and the critical reasoning skills required to discern if a perceived pattern contains meaningful information.
The wealth and privilege inherent to today's medical profession makes doctors resistant to change, and thus those whose job it is to maintain our health have become the primary obstacles to real medical advancements.
Doctors limit entry into their profession so successfully we wait 2-5 months for appointments while we are seriously ill (unless we are very wealthy or know someone). New knowledge in cellular biology and the new capability computers have yet to be unleashed on medicine. Large scale data collection and data mining alone would revolutionize medicine over night, but doctors have no motivation to pursue such work, so it is not done.
The wealth and privilege inherent to today's medical profession makes doctors resistant to change, and thus those whose job it is to maintain our health have become the primary obstacles to real medical advancements.
Doctors limit entry into their profession so successfully we wait 2-5 months for appointments while we are seriously ill (unless we are very wealthy or know someone). New knowledge in cellular biology and the new capability computers have yet to be unleashed on medicine. Large scale data collection and data mining alone would revolutionize medicine over night, but doctors have no motivation to pursue such work, so it is not done.
57
Typical anti-physician screed standard for any health related story on NY Times. I'm not sure how you came to your conclusions on physicians based on this story. The patient had his cancer cells analyzed and it showed a very aggressive form of leukemia. If you read the story with more than a cursory glance, you will see it was the physicians who wanted to continue therapy precisely because they didn't know what the possible outcome would be. The family, as is their right, decided to not try to fight the odds. In this case they were fortunately lucky. It has nothing to do with physicians salaries or the difficulty of getting into medical school.
5
As a doctor myself, this comment is extremely ignorant, offensive, and completely incorrect. Please do your research next time before you comment.
6
"Medicine is a business...", and doctors limit "entry" into medicine, presumably to drive their profits. What tripe these statements are and how utterly dismissive of the reasons that men and women choose medicine as their life's pursuit.
I practiced medicine for 45 years and faced each day with the concern of how I might contribute to the wellness of my patients. To read about the team of oncologists who tried their best to assist and guide the Levys and to fight the tough fight with them, and then to read your note, Jay, devoid of anything but acrimony for medicine and selfless caregiving, is as astonishing as it is lame.
I practiced medicine for 45 years and faced each day with the concern of how I might contribute to the wellness of my patients. To read about the team of oncologists who tried their best to assist and guide the Levys and to fight the tough fight with them, and then to read your note, Jay, devoid of anything but acrimony for medicine and selfless caregiving, is as astonishing as it is lame.
14
So many things about this story are miraculous. It touches on love, letting go, the importance of being honest in our lives and with our relations; Nature's ultimate authority and right timing, that we balance with the medical profession in a dance; the artistry with which the story is written, and particularly Esther's often poetic words.
I send hope and light to this family, and pray that you will someday, as time goes on, uncover the deepest meaning of this trial as you heal. I know that uncertainty still is there and may always be, and I will hold you in the Light.
I send hope and light to this family, and pray that you will someday, as time goes on, uncover the deepest meaning of this trial as you heal. I know that uncertainty still is there and may always be, and I will hold you in the Light.
25
God bless you and your family
11
This is a wonderful story which shows how incremental progress is made in medicine. Often a small accident leads observant doctors to a new insight.
Penicillin was discovered when mold accidentally contaminated some bacteria cultures. I know, from my own cancer treatment (14 years in remission now!) that a lot of good work is being done by activating the immune system to seek out and destroy the cancer cells.
Who knows, maybe a protocol will develop where a carefully selected strain of bacteria is introduced as a deliberate infection, perhaps in combination with traditional chemotherapy or anti-body therapies?
Penicillin was discovered when mold accidentally contaminated some bacteria cultures. I know, from my own cancer treatment (14 years in remission now!) that a lot of good work is being done by activating the immune system to seek out and destroy the cancer cells.
Who knows, maybe a protocol will develop where a carefully selected strain of bacteria is introduced as a deliberate infection, perhaps in combination with traditional chemotherapy or anti-body therapies?
62
Beautiful piece capturing the mysteries of life, the despair of facing the seemingly imminent loss of one's child and the uncertainty and suffering of a pediatric cancer diagnosis for both child and family... may Andrew and his family (as well as all children and families suffering from cancer) find sustained healing, hope, and recovery.
63
The Levi’s experience shows the diagnostic limitations of the genomics that NIH has unrelentingly advertised and the nation has supported with billions of research dollars. We should not trust blindly the 'moonshot' mantra that associational statistics and risk assessments based on genetic sequences predict inevitable outcome. Andrew's physician rightly trusted in the power of Andrew's immune system. I hope she can use this knowledge treating other patients.
My heart goes out to the Levi family, and I hope all ends well for the little man.
I wonder how families with fewer options cope in such situation.
My heart goes out to the Levi family, and I hope all ends well for the little man.
I wonder how families with fewer options cope in such situation.
94
His doctor didn't trust his immune system. She trusted chemo.
While I certainly appreciate the sentiment of not blindly trusting the moonshot or any other large initiative, I think your broad categorization about the 'limitations' of genomics analysis is misplaced. I didn't read in the story that any of the doctors recommended any less aggressive treatment based on the genetic categorization of AMKL or the RAM phenotype (unclear if this was even found by genetic analysis). If anything, to me this case highlights the need for *more research* to better understand the genetics of cancer, especially rare ones such as AMKL where better prognostic and predictive factors are clearly needed.
1
I had a different reading. It was genomic information that made the physicians and family aware ahead of time that "conventional" cancer treatments had little chance of working. Without that, they might have continued with them - and probably wouldn't have seen this recovery.
That said, statistics and risk assessments will never predict anything as inevitable - that's in their very nature. The NIH is in the business of improving the outcomes of a population - it is the physician who must apply what is learned about a population to the unique individual in front of her.
That said, statistics and risk assessments will never predict anything as inevitable - that's in their very nature. The NIH is in the business of improving the outcomes of a population - it is the physician who must apply what is learned about a population to the unique individual in front of her.
1
I applaud the Levy's for their incredible dedication to the overall welfare of their child and their family and the choice to minimize his suffering when it appeared that all reasonable options had been exhausted. In my work I see families day in and day out faced with these incredible decisions and so often they appear to choose a path different than what I would expect I could or would in their situations. I hope he grows up to be as loving, strong and courageous as his parents.
186
Q. When Do You Give Up on Treating a Child With Cancer?
A. Never.
A. Never.
13
Don't you get it? The reason the child recovered is that they gave up the treatment at the proper time. Chemotherapy can kill.
I think this is a question that every family has to answer for themselves. At some point, you are just keeping a child who can recover alive for your own purposes.
1
Except they did and that decision may have been what saved him.
1
Love and Blessings on all of you Children
Trust is love...
...and Nature our Blessing
Trust is love...
...and Nature our Blessing
6
Vanuatu...? You must really appreciate the nytimes to keep you informed. Great article. Blessings to you. cg
A breathtakingly tragic and exhilarating journey. May Andrew continue to thrive.
10
Beautiful article- I hope Esther had a wonderful Mother's Day to celebrate.
11
I am so sorry for you all. Heart breaking. What you must NOT feel is that the title of this story is the essence of this experience. You made a human decision when faced with statistical odds. When and if you child becomes an adult -tell him the truth. That you had decided to reduce his suffering - and somehow the timing was right.
5
Life is a mystery. Medicine is an art as much as a science.
For every story like Andrews, there are stories about the other way. My best friend died of cancer; she was diagnosed in 1998 with a Stage ZERO tumor, which was removed in a very successful surgery. She was treated at a top, nationally recognized oncology center, with a superb team of doctors. Her prognosis was as good as they come -- they expected her to be cured. She was only 47 and had a 3 year old child.
She died anyways, in 2003. Why? there are no good answers. She was UNlucky. Things didn't go her way. The cancer returned. The cancer metasticized. It spread to her spine and lungs. The chemo stopped working.
There are miracles in this world. There are also tragedies. And there is no way of predicting which hand you will be dealt.
For every story like Andrews, there are stories about the other way. My best friend died of cancer; she was diagnosed in 1998 with a Stage ZERO tumor, which was removed in a very successful surgery. She was treated at a top, nationally recognized oncology center, with a superb team of doctors. Her prognosis was as good as they come -- they expected her to be cured. She was only 47 and had a 3 year old child.
She died anyways, in 2003. Why? there are no good answers. She was UNlucky. Things didn't go her way. The cancer returned. The cancer metasticized. It spread to her spine and lungs. The chemo stopped working.
There are miracles in this world. There are also tragedies. And there is no way of predicting which hand you will be dealt.
9
Thank you for the uplifting story. I'm so glad of the outcome. With the good outcome, I can point something out that would be otherwise insensitive and non-PC. This is a very well off family with access to state of the art medical care. Even with the resources to best deal with the problem, this was difficult and so painful that no family should have to ever go through it. Given that, think about what happens when this disease affects a poor or middle-class family. It will be much worse. Is it really so easy for conservatives to deny even basic medical care for all Americans? We are a rich nation. Are they really so heartless?
301
I had the same reaction. This is a family who could buy a new house, hire a decorator, rent a sterile second home temporarily and curtail or leave work during this terrible time. How many families would face eviction, job and medical insurance loss, a lifetime of debt and other financial catastrophes on top of all this - too many, I suspect. I'm not minimizing this family's ordeal - but just imagining the enormous pressures added to, say, an every day blue collar family in this situation.
4
You know -- that is an awful thing to say. Conservatives don't want to deny medical care to people. And it was LIBERALS who gave you Obamacare, with crappy Bronze policies that charge premiums and cover nothing, and stick people with bankrupting deductibles of $6300 PER YEAR.
Also: 85% of Americans get pretty good health insurance from employers. It's not like most of us go around without health care. We have charity care for poor people, Medicaid, you can go to the ER for free if you have no money.
Lastly: we are not a "rich nation" and haven't been one for some time. We are $20 TRILLION in debt, thanks to Obama (yes, it happened on his watch -- DOUBLE the debt we had with Bush, even with two wars going on).
Also: 85% of Americans get pretty good health insurance from employers. It's not like most of us go around without health care. We have charity care for poor people, Medicaid, you can go to the ER for free if you have no money.
Lastly: we are not a "rich nation" and haven't been one for some time. We are $20 TRILLION in debt, thanks to Obama (yes, it happened on his watch -- DOUBLE the debt we had with Bush, even with two wars going on).
2
As someone who is very grateful that her adult child has an "Obamacare" exchange policy, I have to say this: it is fantasy to think that it is much more than a policy. It does NOT guarantee top of the line medical care. My child skips going to the doctor ALL THE TIME because the deductible is $6,800. In addition, go online and see how many TOP medical research facilities accept exchange policies. If my child needed to go to the Mayo Clinic, for example, it would be a no-go. They do not accept this policy, like most of the best places. In fact, none of our life-long family doctors accept the policy and it would be very difficult to find someone nearby who would! There are still problems and to deny these for an "us versus them" political point isn't helpful.
4
the horror of a child's cancer diagnosis....the horror... does fade once recovery happens. But to live in horror, while caring for 3 children cannot be easily imagined. Life on this planet is a mystery. An event like this brings one into the dark side of it all.
3
Thank you for sharing this story. Much love and hope for your family
3
Having recently run the 2016 Boston Marathon on the Dana-Farber Marathon Challenge, and having a Jimmy Fund Patient Partner who was diagnosed with Acute Lymphoblastic Leukemia (ALL) when he was 3 and an In-Memory Patient Partner that died from an inoperable and rare Astrocytoma Glioma level 3 tumor when he was just 3, this article was a really wonderful read. Even with the millions of dollars my team raises every year for research, sometime cancer has a mind of its own. In a good way.
3
Sometimes care is better than treatment.
16
wow. what a story. nothing like crying over coffee at 630a in my kitchen. well done nytimes...excellent journalism.
15
Thank you to the family for sharing this intimate experience of celebrating life and embracing the dying process; thank you to the journalist for writing her perspective and thank you to the NYT for publishing this story! Why do we continue to avoid the conversation about dying, one of humankinds inevitable experiences? We celebrate birth, life and commit immeasurable resources toward the dying processes (as measured by the large percentage those resources consuming our GDP) and we continue to report its often perceived, “tragic affects” as if they were an affront to living. This family's experience of the dying process and their willingness to embrace it fully, sharing with all, provided them a unique opportunity to realize the beauty and joy of the life process, to mindfully and spiritually embraced the inevitable. Our western society continues to profit from the inevitable demise of the human being; perpetuating the myth that the dying process is somehow un-natural, creating within most of us the perception that we must walk the path of pain, suffering and for some, financial ruin. It’s time to have the conversation, to embrace the inevitable and reduce the suffering and expense many continue to profit from and exploit for personal gain and greed.
2
A unique case.
6
If the theory that "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" is correct, then bone marrow transplants should also be accompanied/followed by a SAFE way of triggering such a response, such as Freund's adjuvant or "Coley's Toxins."
3
It is very reassuring to learn of possible possibilities instead of ultimatums for the end of all hope.
I hope that Andrew grows to know a healthy and happy life with all the fulfillment such a life can offer. Of course that is the hope for all children, or we wish it was the hope for all children.
For Esther and Dan, I know. I wish you much healing. Be reassured that for your children, Wills and Lea, these memories will become less and less until they are more like a book read or movie watched repeatedly for a year, abruptly stopped, and then never experienced again. They will surprise you by how little they recall when they have reached their mid-30s. You need to heal one another and then return to the life you knew, Esther.
I hope that Andrew grows to know a healthy and happy life with all the fulfillment such a life can offer. Of course that is the hope for all children, or we wish it was the hope for all children.
For Esther and Dan, I know. I wish you much healing. Be reassured that for your children, Wills and Lea, these memories will become less and less until they are more like a book read or movie watched repeatedly for a year, abruptly stopped, and then never experienced again. They will surprise you by how little they recall when they have reached their mid-30s. You need to heal one another and then return to the life you knew, Esther.
4
Miracles do happen. God bless Andrew and his family. They have gone through a whole "lifetime" of pain and suffering. This is when you start believing in "fate" and what the God has set for me. As a Hindu believer in the ultimate power of the God, I truly believe that one has to just perform their "Karma" as set out by the God", and not strive for or Waite for the results of the karma. Only the God, the Ultimate Power, knows the results of you deeds.
15
A women I knew closely was, circa 1948 at Roswell Park Cancer Institute in Buffalo, diagnosed as an infant with malignant melanoma. She underwent treatments for about ten years then, following the tracking of a tumor growing around her spine, the doctors advised removing it would cause horrendous pain for her and that survival chances were minimal, with or without the operation. Her parents decided to offer her a peaceful path on the short remainder of her life.
She returned two years later, at thirteen,receiving a diagnosis of "spontaneous regression." Her mother thought it was a visit to Billy Graham. Her doctors, and she later in life, thought it was going through puberty. At age 20, she had the old tumors' scar tissue removed, both for aesthetic and precautionary (who knew what happened) move.
The cancer never returned.
She returned two years later, at thirteen,receiving a diagnosis of "spontaneous regression." Her mother thought it was a visit to Billy Graham. Her doctors, and she later in life, thought it was going through puberty. At age 20, she had the old tumors' scar tissue removed, both for aesthetic and precautionary (who knew what happened) move.
The cancer never returned.
43
Perhaps it was not actually cancer, as they are now discovering in treating thyroid 'cancer'.
I am curious. What protocol was used to treat malignant melanoma in 1948-1958?
1
That's another part of the picture that's often not factored in--the medical profession has little understanding of how hormones involved in puberty, childbirth, and menopause often trigger or stop illnesses, whether life-threatening or not. Someone else suggested data collection, and I think this is an integral part of it.
Glad your friend recovered!
Glad your friend recovered!
2
"The final, critical decision was made against medical advice: Esther and Dan’s resolution to stop treatment and let Andrew die...
"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."
Esther Levy had to give up hope. Of all the strength she had to muster, as the article shapes the story, this was the hardest and greatest thing she did. Hardest because that is not who we all are supposed to be. We are supposed to 'fight' and be tough and fight again. What is the cost of this struggle? Is it sometimes good to let go, to accept you cannot control the outcome of... most truly important things?
It is so counterintuitive for most of us, but letting go is also a life skill. In this case life-saving. But in general, more valuable than we allow.
I loved that the writer noted this, saw this, as part of the Levys' story.
"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."
Esther Levy had to give up hope. Of all the strength she had to muster, as the article shapes the story, this was the hardest and greatest thing she did. Hardest because that is not who we all are supposed to be. We are supposed to 'fight' and be tough and fight again. What is the cost of this struggle? Is it sometimes good to let go, to accept you cannot control the outcome of... most truly important things?
It is so counterintuitive for most of us, but letting go is also a life skill. In this case life-saving. But in general, more valuable than we allow.
I loved that the writer noted this, saw this, as part of the Levys' story.
131
Reinhold Neibuhr's words may have been trivialized by being etched on necklaces sold in walmart, but they are still very powerful:
God, grant me the serenity to accept the things I cannot change, courage to change the things I can, And wisdom to know the difference.
These truly are the ultimate "life skills' that seem always just beyond our reach. How wonderful that they served this family so well.
God, grant me the serenity to accept the things I cannot change, courage to change the things I can, And wisdom to know the difference.
These truly are the ultimate "life skills' that seem always just beyond our reach. How wonderful that they served this family so well.
2
I really honor these parents for their courage in each decision they made and continue to make for Andrew. I am so glad Andrew has had such a wonderful outcome but I truly believe prolonging life whatever the cost to the individual and their family is not always the right choice. It is however a very personal one. A peaceful death surrounded by your family can be a beautiful and incredible event if supported by love. Hospice doctors and nurses do great work.
25
Amazing, positive story!
6
In medicine we tell the joke " why are people buried with nails put in the coffin? so that the oncologist will not pull out the corpse for one last try at chemotherapy ". The guiding principle for us in medicine is to cure sometimes and comfort always This article is a beautiful story as to why families must always have the final word.
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That's a great joke, if this were the 50s or 60s, when treatment of childhood ALL had a success rate around 0%, so bombarding a human with chemo seemed like torture to doctors who seem to be resigned to fate. I'm sure your joke just slays among your death panel.
But here in the next millennium, success rates are around 90% thanks to the persistence, ingenuity and innovation of oncologists. I trust my 9 year old's oncologists with her life because if we were living just 50 years ago, she would have died at age 7.
Yes, complications from treatment have been brutal and sometimes life-threatening, but c'mon -- they're doing the impossible not because they're racists but because they care that much to fight the odds and do what is necessary to save lives worth saving.
But here in the next millennium, success rates are around 90% thanks to the persistence, ingenuity and innovation of oncologists. I trust my 9 year old's oncologists with her life because if we were living just 50 years ago, she would have died at age 7.
Yes, complications from treatment have been brutal and sometimes life-threatening, but c'mon -- they're doing the impossible not because they're racists but because they care that much to fight the odds and do what is necessary to save lives worth saving.
2
That story is heart wrenching and unfinished. I sincerely wish them peace and a long future together.
26
The Levys "gave up" on treating Andrew in order to allow him and their entire family to LIVE in comfort and peace for whatever amount of time their son had left. Aside from his miraculous recovery, it was absolutely the best decision for everyone involved.
155
Best to avoid false hope and needless suffering which is endemic and epidemic in today's medical industrial complex.
2
Yet in the story I read, they didn't live in comfort and peace. Andrew knew new agonies, the parents fell from hope into despair and discomfit with the uncertainty of their decision.
Sometimes the best (and hardest) decision is to let go....and let nature (or god) take its course.
However, most of the time it doesn't turn out this way. This was really miraculous. And I can't avoid seeing that the family had resources that dwarf what most people have -- including incredible affection and support from their doctors, and the affluence to buy a new, luxurious home as a place to grieve. This is so far beyond what most cancer patients or their families get or can have, that it just gobsmacks me. Cancer expenses are ruinous; many families just as nice and sympathetic as the Levis are driven into BANKRUPTCY and the idea of buying a new, more luxurious home "sight unseen" would be laughably impossible.
However, most of the time it doesn't turn out this way. This was really miraculous. And I can't avoid seeing that the family had resources that dwarf what most people have -- including incredible affection and support from their doctors, and the affluence to buy a new, luxurious home as a place to grieve. This is so far beyond what most cancer patients or their families get or can have, that it just gobsmacks me. Cancer expenses are ruinous; many families just as nice and sympathetic as the Levis are driven into BANKRUPTCY and the idea of buying a new, more luxurious home "sight unseen" would be laughably impossible.
5
An amazing story. I sincerely respect the parents for their decisions, so difficult to make. They considered the impact on the whole family and on their sick child. The (hopefully not temporary) result is "luck", as they call it, but should serve as an important case for doctors. The mysteries of disease are great, and medical research is one of the most noble professions. Each unusual case like this can serve as one small clue in solving a never-ending puzzle.
30
I am so happy for this family that Andrew has a future again. In time, Esther's happiness will return. She's a wonderful mother.
16
Wow. So happy for this family. Nice to read something happy in the newspaper.
10
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.
901
The fact that you acknowledge this makes you a much better, much more compassionate, and, in the end, a more effective physician. If only physicians all shared your very human philosophy.
8
It would be nice if the AMA would admit the same, and perhaps, while I'm asking for miracles, announce that it will no longer let Big Pharma lead it about by its collective nose.
But I certainly appreciate a physician who speaks as do you. Thank you.
But I certainly appreciate a physician who speaks as do you. Thank you.
1
I will share some strength with your family to move through a rough patch with peace and composure. It is a very difficult path to walk when a loved one, particularly a child has such issues. The rarity of Andrew's condition points to the unknown even for the best doctors. Relish the time you have, no one knows for certain when the end will come.
Remembering my brother...
Remembering my brother...
62
I had a co-employee who was somewhat of a mentor in my first job as a lawyer. He decided to retire, and a couple of years later, we learned he was suffering from terminal cancer and spending his final days in his daughter's household, 100 miles away. I took an afternoon off to go visit him for what I believed to be the last time. While he was in good spirits, he looked like a stick figure. But he seemed to have a surprisingly good appetite for food for someone in his condition.
I am an ethical person, but not religious. Nevertheless, that night I prayed, to whatever higher power that may exist, that my friend be watched over and his suffering minimized.
I later learned that when I had visited him, he was in the early stages of an unexplained spontaneous remission. He regained his weight, and a year later, I saw him again. He looked the same as he had looked before he retired. That was over 20 years ago, and he is still in good health.
What did this teach me? It taught me that there is still a lot unknown when it comes to cancer, and if at all possible, never give up.
And even if you do not have a religious bone in your body, say a prayer. It can't hurt.
I am an ethical person, but not religious. Nevertheless, that night I prayed, to whatever higher power that may exist, that my friend be watched over and his suffering minimized.
I later learned that when I had visited him, he was in the early stages of an unexplained spontaneous remission. He regained his weight, and a year later, I saw him again. He looked the same as he had looked before he retired. That was over 20 years ago, and he is still in good health.
What did this teach me? It taught me that there is still a lot unknown when it comes to cancer, and if at all possible, never give up.
And even if you do not have a religious bone in your body, say a prayer. It can't hurt.
329
@RM:
What an amazing story, thanks for sharing it. What type of cancer had your friend suffered from?
What an amazing story, thanks for sharing it. What type of cancer had your friend suffered from?
1
It apparently started as a liver cancer, but it had spread through his entire torso. And without explanation, disappeared. His doctors were mystified.
8
@RM : That's incredible. Lucky individual. Thanks for your reply.
2
Healing is as much an art as it is a science
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