When Esther and Dan Levy's son Andrew was 14 months old, he received a diagnosis of a kind of leukemia so rare that their medical team said getting it was like being bitten by a shark and struck by lightning at the same time.
Leukemia, a cancer of those cells in the bone marrow that produce new blood cells, has many varieties, but the most common type in children, acute lymphocytic leukemia, is largely curable. Andrew's cancer, however, a subtype of acute megakaryoblastic leukemia (AMKL), affects only about 45 children a year nationwide and is much more difficult to treat. The odds of surviving this type of AMKL are roughly even — unless the child is one of a handful who happen to have a particular genotype, in which case these odds plummet to a mere one in 10. Genetic analysis revealed that Andrew was in this tiny group.
There was more bad news. Two weeks after the diagnosis, Andrew's doctor, Norman Lacayo, an oncologist at Lucile Packard Children's Hospital at Stanford University, received an urgent call from Michael Loken, the president of Hematologics Inc., a Seattle lab that was analyzing Andrew's cells. Loken had recently discovered that a small percentage of children with AMKL had a specific phenotype — a pattern of proteins on the surface of the leukemia cell he called R.A.M. (a former patient's initials) — that independently predicted a terrible outcome, with a survival rate of about one in six. Andrew had this phenotype too.
"Has anyone ever survived this kind of cancer?" Dan asked Lacayo. "All I wanted to know is that it was not impossible," Dan recalls. Lacayo said yes, but Dan felt his answer was "foggy." The truth was that the team couldn't find a single equivalent case in the literature.
Beginning on that December morning in 2014 when Esther took Andrew to the E.R., she recalls, she felt as if they had stepped into a horror movie, the unfolding events both surreal and evil. Up to that point, Esther and Dan had led, in her words, "charmed lives — picture perfect." Only a small subset of people would sincerely say that nothing truly bad has ever happened to them; before the diagnosis, Esther and Dan say, they were among them. When Andrew got sick, they were in their mid-30s and energetic, optimistic and extroverted. They had both attended Stanford — Dan majored in industrial engineering, Esther in human biology, with a minor in dance — before going on to successful careers. Dan founded a sports-related start-up, then became vice president of small business at Facebook, while Esther worked at Kurbo, a start-up focused on weight management for kids, and taught spin classes at a Jewish community center for fun. Their own families were stable and close-knit; to recall any true adversity in either family, they had to think back to a grandmother of Dan's whose family perished in the Holocaust.
Once Andrew's illness was diagnosed, he needed a bone-marrow transplant as swiftly as possible. First the doctors had to kill the leukemic cells in Andrew's bone marrow with chemotherapy, then replace them with a donor's cells. Andrew's 3-year-old sister, Lea, and his 5-year-old brother, Wills, were tested, and in the family's first bit of luck since the diagnosis, Wills turned out to be a perfect donor match. Andrew underwent two rounds of chemotherapy, but there were still traces of cancer when the transplant was performed in February 2015, putting the outcome at high risk of failure.
The Levys had created a Helping Hands website, where friends signed up to host play dates or deliver meals (as did our family because our children were in the same school as Wills), and a Facebook group for updates on Andrew's illness, which 1,700 people joined. But despite all the support, Esther felt deeply "alone with the experience," she says. Her former life had vanished: She was living in Andrew's hospital room, sleeping on a sofa that opened into a hard bed. She had left her job and the rest of her family while Dan continued to work and live at home with Wills and Lea. Her nights were punctured by Andrew's cries; her days were spent frantically trying to distract him from his pain and nausea, cleaning up his vomit, holding him down during blood draws and making stressful medical decisions. He screamed if she left him for a few minutes, even to use the bathroom or shower.
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http://www.nytimes.com/2016/05/15/magazine/childhood-cancer-treatment.html?
Thursday, May 12, 2016
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Monday, May 9, 2016
Even In An Emergency, Doctors Must Make Informed Consent An Informed Choice - Health Affairs
My dad is a wonderful man. In his working years, he was a tax accountant who served on the board of the Bronx River Neighborhood Center and shared his passion for tennis by teaching young men who lived in the South Bronx to play. He retired early to introduce others to meditation and other stress reduction methods that he had found helpful, and he ended up as a volunteer community mediator.
In October 2013, just a few months after giving up playing tennis, my eighty-eight-year-old father was diagnosed as having stage 4 prostate cancer. He responded well to the hormone treatments, but by May 2014 his prostate had gotten so large that he had difficulty peeing. Although he liked saying, "I don't like to brag, but I have a HUUUGE prostate," this condition had become dangerous: The blockage began to cause kidney failure.
My dad's urologist gave him two choices. He could either live with a catheter (a tube inserted into his bladder) for the rest of his life, or he could have surgery to trim his prostate to create a channel for the pee. After hearing that sporting a catheter would end his ping-pong career and that he'd only have to spend one night in the hospital, my dad overcame a long-standing fear of germs and elected to have the surgery.
Since my mother's immune system was shot from having chemotherapy for lymphoma, my twenty-year-old son and I were the ones who accompanied my dad to the hospital. I am not a clinician, but I have worked for the Agency for Healthcare Research and Quality for almost twenty years, and I felt well equipped to be my dad's health care proxy. He checked into the ambulatory surgery unit early in the morning and was soon taken away for the surgery.
Immediately after the surgery, my dad's urologist told us that it had gone well. The following morning, however, he informed us there was too much blood in my dad's pee. My father had to stay in the hospital an extra day so they could flush the blood out while the catheter was still in place.
On his third day in the hospital, my father was pronounced ready for a "voiding trial." They pumped a liter of fluid into his bladder, removed the catheter, and waited to see if he could pee. However, my dad felt no urge to go. Even after drinking cup after cup of water and sitting with a handheld urinal for several hours, he couldn't get anything out.
It was early that afternoon when I noticed that he was having some difficulty speaking. He was clearly trying to say something but couldn't come up with the words he was searching for.
I pointed out the problem to the urology nurse practitioner. "Dad, what are you trying to do?" I asked him.
"Well, I'm trying to…" His words trailed off. "You see, I'm making an effort… I'm really…" He couldn't say, "I'm trying to pee."
The nurse practitioner suggested that we call the stroke team. While I didn't think my dad had had a stroke, I knew I might be attributing the symptoms to other health issues, which frequently happens to stroke victims in hospitals. So I agreed, and the nurse called in the stroke team.
More ...
http://content.healthaffairs.org/content/35/4/739.full#sec-2
In October 2013, just a few months after giving up playing tennis, my eighty-eight-year-old father was diagnosed as having stage 4 prostate cancer. He responded well to the hormone treatments, but by May 2014 his prostate had gotten so large that he had difficulty peeing. Although he liked saying, "I don't like to brag, but I have a HUUUGE prostate," this condition had become dangerous: The blockage began to cause kidney failure.
My dad's urologist gave him two choices. He could either live with a catheter (a tube inserted into his bladder) for the rest of his life, or he could have surgery to trim his prostate to create a channel for the pee. After hearing that sporting a catheter would end his ping-pong career and that he'd only have to spend one night in the hospital, my dad overcame a long-standing fear of germs and elected to have the surgery.
Since my mother's immune system was shot from having chemotherapy for lymphoma, my twenty-year-old son and I were the ones who accompanied my dad to the hospital. I am not a clinician, but I have worked for the Agency for Healthcare Research and Quality for almost twenty years, and I felt well equipped to be my dad's health care proxy. He checked into the ambulatory surgery unit early in the morning and was soon taken away for the surgery.
Immediately after the surgery, my dad's urologist told us that it had gone well. The following morning, however, he informed us there was too much blood in my dad's pee. My father had to stay in the hospital an extra day so they could flush the blood out while the catheter was still in place.
On his third day in the hospital, my father was pronounced ready for a "voiding trial." They pumped a liter of fluid into his bladder, removed the catheter, and waited to see if he could pee. However, my dad felt no urge to go. Even after drinking cup after cup of water and sitting with a handheld urinal for several hours, he couldn't get anything out.
It was early that afternoon when I noticed that he was having some difficulty speaking. He was clearly trying to say something but couldn't come up with the words he was searching for.
I pointed out the problem to the urology nurse practitioner. "Dad, what are you trying to do?" I asked him.
"Well, I'm trying to…" His words trailed off. "You see, I'm making an effort… I'm really…" He couldn't say, "I'm trying to pee."
The nurse practitioner suggested that we call the stroke team. While I didn't think my dad had had a stroke, I knew I might be attributing the symptoms to other health issues, which frequently happens to stroke victims in hospitals. So I agreed, and the nurse called in the stroke team.
More ...
http://content.healthaffairs.org/content/35/4/739.full#sec-2
Women Are the Invisible Victims of PTSD | Motherboard
In 1985, Michael R. Trimple wrote in the book Trauma And Its Wake, "To this British observer, the term 'post-traumatic stress disorder' springs from the pages of the DSM-III like some newly found tropical flower, previously undescribed, yet clearly present in its full-blooded maturity for any onlooker to see."
Just five years before, PTSD had been added to the DSM, psychology's standard diagnostic manual, amidst much controversy. But in the 31 years since, Trimple's description of PTSD as a condition that has always been around, flowering silently, has been largely accepted. Of course, PTSD existed long before doctors gave it a name and a diagnostic code. Some researchers point to Shakespeare's "King Henry IV," wondering if the bard's character was showing symptoms of the disorder. Samuel Pepy's Diary, in which he recounts the Great Fire of London, has been similarly analyzed as a text that describes PTSD.
But naming a disorder does help it become more accepted. Today, the premise that a combat veteran might return with PTSD a well publicized idea. But the idea that a woman who has experienced abuse and trauma might experience the disorder is still called into question.
More ...
http://motherboard.vice.com/read/ptsd-isnt-just-for-soldiers?
Just five years before, PTSD had been added to the DSM, psychology's standard diagnostic manual, amidst much controversy. But in the 31 years since, Trimple's description of PTSD as a condition that has always been around, flowering silently, has been largely accepted. Of course, PTSD existed long before doctors gave it a name and a diagnostic code. Some researchers point to Shakespeare's "King Henry IV," wondering if the bard's character was showing symptoms of the disorder. Samuel Pepy's Diary, in which he recounts the Great Fire of London, has been similarly analyzed as a text that describes PTSD.
But naming a disorder does help it become more accepted. Today, the premise that a combat veteran might return with PTSD a well publicized idea. But the idea that a woman who has experienced abuse and trauma might experience the disorder is still called into question.
More ...
http://motherboard.vice.com/read/ptsd-isnt-just-for-soldiers?
1 in 3 antibiotics prescribed in U.S. are unnecessary, major study finds - The Washington Post
Nearly a third of antibiotics prescribed in doctors' offices, emergency rooms and hospital-based clinics in the United States are not needed, according to the most in-depth study yet to examine the use and misuse of these life-saving drugs.
The finding, which has implications for antibiotics' diminished efficacy, translates to about 47 million unnecessary prescriptions given out each year across the country to children and adults. Most of these are for conditions that don't respond to antibiotics, such as colds, sore throats, bronchitis, flu and other viral illnesses.
Although health officials have been warning for decades about the overuse of antibiotics and its contribution to the development of drug-resistant bacteria, the research from the Centers for Disease Control and Prevention and the Pew Charitable Trust is the first to quantify the depth of the problem.
"We've all been hearing, 'This is a problem, this is problem,' and we all understood the general concept that there is a lot of antibiotic use," said David Hyun, a senior officer with Pew's antibiotic resistance project and one of the authors of the report published Tuesday in JAMA. Pew also published a companion report using the same data.
https://www.washingtonpost.com/news/to-your-health/wp/2016/05/03/1-in-3-antibiotics-prescribed-in-u-s-are-unnecessary-major-study-finds/?
The finding, which has implications for antibiotics' diminished efficacy, translates to about 47 million unnecessary prescriptions given out each year across the country to children and adults. Most of these are for conditions that don't respond to antibiotics, such as colds, sore throats, bronchitis, flu and other viral illnesses.
Although health officials have been warning for decades about the overuse of antibiotics and its contribution to the development of drug-resistant bacteria, the research from the Centers for Disease Control and Prevention and the Pew Charitable Trust is the first to quantify the depth of the problem.
"We've all been hearing, 'This is a problem, this is problem,' and we all understood the general concept that there is a lot of antibiotic use," said David Hyun, a senior officer with Pew's antibiotic resistance project and one of the authors of the report published Tuesday in JAMA. Pew also published a companion report using the same data.
https://www.washingtonpost.com/news/to-your-health/wp/2016/05/03/1-in-3-antibiotics-prescribed-in-u-s-are-unnecessary-major-study-finds/?
Sunday, May 8, 2016
NYTimes: Why You Can’t Lose Weight on a Diet
Six years after dropping an average of 129 pounds on the TV program "The Biggest Loser," a new study reports, the participants were burning about 500 fewer calories a day than other people their age and size. This helps explain why they had regained 70 percent of their lost weight since the show's finale. The diet industry reacted defensively, arguing that the participants had lost weight too fast or ate the wrong kinds of food — that diets do work, if you pick the right one.
But this study is just the latest example of research showing that in the long run dieting is rarely effective, doesn't reliably improve health and does more harm than good. There is a better way to eat.
The root of the problem is not willpower but neuroscience. Metabolic suppression is one of several powerful tools that the brain uses to keep the body within a certain weight range, called the set point. The range, which varies from person to person, is determined by genes and life experience. When dieters' weight drops below it, they not only burn fewer calories but also produce more hunger-inducing hormones and find eating more rewarding.
More ...
http://www.nytimes.com/2016/05/08/opinion/sunday/why-you-cant-lose-weight-on-a-diet.html?
But this study is just the latest example of research showing that in the long run dieting is rarely effective, doesn't reliably improve health and does more harm than good. There is a better way to eat.
The root of the problem is not willpower but neuroscience. Metabolic suppression is one of several powerful tools that the brain uses to keep the body within a certain weight range, called the set point. The range, which varies from person to person, is determined by genes and life experience. When dieters' weight drops below it, they not only burn fewer calories but also produce more hunger-inducing hormones and find eating more rewarding.
More ...
http://www.nytimes.com/2016/05/08/opinion/sunday/why-you-cant-lose-weight-on-a-diet.html?
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