DiversityNursing Blog

By CNN Staff

(CNN) -- In the future, a test of your sense of smell may help doctors predict your risk of developing Alzheimer's disease, according to new research presented at the Alzheimer's Association International Conference in Copenhagen, Denmark, this week.

In two separate studies, scientists found that people who were unable to identify certain odors were more likely to experience cognitive impairment. The researchers believe that brain cells crucial to a person's sense of smell are killed in the early stages of dementia.

Researchers say this information could help doctors create a smell test to detect Alzheimer's earlier. Early detection means early intervention and treatment to slow the progression of the disease. Doctors today can only diagnose Alzheimer's disease once it has caused significant brain damage.

"In the face of the growing worldwide Alzheimer's disease epidemic, there is a pressing need for simple, less invasive diagnostic tests that will identify the risk of Alzheimer's much earlier in the disease process," Heather Snyder, director of medical and scientific operations for the Alzheimer's Association, said in a statement.

More than 35 million people worldwide live with dementia today, according to a new report. By 2050, that number is expected tomore than triple to 115 million.

Source: cnn.com

By Foxnews.com

On Thursday, 3-year-old cancer patient Wyatt Schmaltz was sworn in as the nation’s youngest special sheriff deputy from his hospital room in Indianapolis.

In April, Wyatt was diagnosed with aggressive, stage 4 neuroblastoma and has undergone several rounds of chemotherapy.  Soon, he’ll undergo surgery to remove a tumor from his abdomen and he will also undergo a stem cell transplant.

As a tribute to his courage throughout his treatments, an Indiana sheriff and a state trooper visited Wyatt at his room in Riley Hospital for Children at Indiana University Health, giving him the powers of a sheriff deputy – as well as a badge and uniform.  Terry Stoffel, a sheriff for Huntington County, noted that the title is an official designation.

"We have given Wyatt all the powers of a real sheriff deputy, which are to carry out the orders of the sheriff. Right now, his only orders are to get better,” Stoffel said.

According to doctors at Riley Hospital, such acts of kindness can really help to make children well again.

"Gestures like this really aid the healing process for our patients," said Dr. Michele Saysana, a pediatrician with Riley Hospital for Children at IU Health. "It brought tears to our team members’ eyes to see officers, who are sworn to protect and serve, travel to pay tribute to one of our patients."

After being sworn in, Wyatt asked: “What else do you have?”

Source: foxnews.com

By GILLIAN MOHNEY

A girl believed to be “cured” of HIV at birth now has detectable levels of the virus, health officials said today.

The unnamed girl, dubbed the “Mississippi baby” after being born to an HIV-positive mother in 2010 and quickly treated with an intense dose of antiretroviral medication, showed no signs of the virus for roughly four years, according to the National Institute for Allergy and Infectious Disease. But a recent round of tests revealed detectable levels of HIV in her blood as well as antibodies to the virus and a decreased T-cell count -- all signs of the infection.

“Certainly, this is a disappointing turn of events for this young child, the medical staff involved in the child’s care, and the HIV/AIDS research community,” NIAID director Dr. Anthony Fauci said in a statement. “Scientifically, this development reminds us that we still have much more to learn about the intricacies of HIV infection and where the virus hides in the body.”

The case of the Mississippi baby made headlines across the globe after being published in the New England Journal of Medicine. Dr. Hannah Gay, the University of Mississippi Medical Center pediatrician who treated the infant at birth, was listed as one of Time magazine’s most influential people of 2013.

Gay's decision to give the newborn antiretroviral medication in the days before it was confirmed that she was in fact HIV-positive was controversial, since there was only a 25 percent chance that the girl would contract the virus from her mother.

The girl continued treatment for 18 months before her mother stopped taking her to her clinic appointments. Five months later, when she went back for a check-up, she surprised doctors with undetectable levels of the virus.

At first, Gay and her colleagues said the baby had been “functionally cured” of the virus, but later revised their language to “remission” to better convey that there was a chance the virus could rebound, they said at the time.

Although the girl's positive test results have been described as a disappointment, experts say her case still shows tremendous progress in treating the virus that causes AIDS.

“The fact that this child was able to remain off antiretroviral treatment for two years and maintain quiescent virus for that length of time is unprecedented,” Dr. Deborah Persaud, professor of infectious diseases at the John Hopkins Children’s Center in Baltimore, said in a statement released by NIAID. “Typically, when treatment is stopped, HIV levels rebound within weeks, not years.”

Persaud is one of the two pediatric HIV experts involved in the ongoing analysis of the case.

“This virus is amazingly recalcitrant,” said Fauci. “It’s in reservoirs, except we don’t know every place in the body where the reservoir is going to be.”

NIAID and the National Institute of Child Health and Human Development announced today that they would provide funding to analyze the unique case and will take the new findings into account during a new clinical trial.

Source: abcnews.go.com

By NPR Staff

As hearing aid technology has improved, so has health reporter Kathleen Raven's confidence.

When she was 5 years old, she found out she had a hearing problem. Complications during her birth led to damage in her inner ear.

"I couldn't hear water dripping from a faucet. I couldn't hear crickets on a summer night," she tells NPR's Kelly McEvers. "I couldn't hear sirens, couldn't hear fire alarms in our school fire drills, so I did a lot of watching other people."

The diagnosis was moderate to severe loss of high- and low-frequency hearing. When it comes to speech, certain sounds are out of range for her. Sounds like "ch," "sh" and "th" blend together.

Raven says she reads lips "religiously," but when she can't see a person's lips, she can understand maybe every third word — that is, without a hearing aid.

She got her first hearing aids — a large, clunky set — back when she was 5 in 1993.

"They were about 2 inches long and very thick, and they connected to a very large ear mold inside my ear," she says. "They call them flesh-colored, but they're not the color of anyone's flesh." Her young classmates teased her.

But the technology kept changing. Every few years, her parents would shell out $4,000 to $5,000 on each new device. By the time she got to high school, she had her first completely inside-the-ear hearing aid. That changed everything.

"I just became more confident walking into crowds. I didn't try to hide, I didn't arrange my hair to cover my ears. I started being more talkative, going out with my friends more," says Raven. "I didn't realize how much that fear had impacted me until I got completely in-the-ear hearing aids."

She went on to college and started pursuing her dream of reporting.

"I encountered a few raised eyebrows along the way," she says. "Why do you want to make a living of hearing people when that's a challenge for you?"

She pushed past the skeptics and became a reporter. Today she writes about oncology forBioPharm Insight.

As years passed and the technology progressed, Raven thought her hearing had maxed out. But with each upgrade, she discovered more sounds. Two years ago, she received her latest pair, which cost $7,000.

When her audiologist put them in her ears, she heard an unfamiliar noise. "I just happened to smack my lips together, like you're tasting something," she recalls. "It's just such a simple sound, but it was earth-shattering."

Her audiologist put on Beethoven, and she heard new instruments and trills. "It was like seeing the world in 3-D, or hearing the world in 3-D for the first time," Raven says.

These latest hearing aids are basically invisible. Even still, now she tells people about her hearing loss.

"Five years ago, I still was not ever telling people unless it was absolutely necessary. And now I do work it into conversation in the first five minutes or so," she says. If she needs to ask someone to repeat something, she'll just add, "I have a hearing problem."

"That phrase was impossible for me to say for the first 20 years of my life," Raven says. "Now I think it's very important for hearing loss to be accepted for younger people, of course, and also for older people."

Source: npr.org

By Julie Scharper

Every working breastfeeding mother has had it happen at least once: You're on a break, ready to pump, when you discover you forgot a crucial piece of equipment. 

Maybe it's a valve, a piece of tubing or a storage bag. You find yourself wondering if you can store milk in a water bottle or use butter as a nipple cream because there's no time to run home.  What can you do?

Workers at Johns Hopkins Hospital can now purchase breastfeeding equipment from a vending machine -- believed to be the first of its kind.

The machine, which was installed last month, stocks pump accessories, storage bottles, breast pads and nipple cream, among other supplies for nursing mothers.

It's the brain child of Meg Stoltzfus, Lifespan Services Manager for the Office of Work, Life and Engagement at Hopkins.

"I worked and pumped as well, so I've made it sort of a mission to help other moms," she said.

Stoltzfus was walking through an airport last year when she noticed what a large variety of items are sold in vending machines.  It occurred to her that a vending machine would be the perfect way to provide pumping equipment for mothers at the hospital, who often work unusual hours and may need equipment when the hospital gift shops are closed.

Stoltzfus worked directly with a manufacturer to design a machine that specializes in pumping gear.  It was installed last month in a nursing mother's room in the hospital's Nelson building.

As an added bonus, the equipment is sold at a discount because it is an employee benefit. Customers swipe a credit or debit card to purchase items.

"I tried to brainstorm the kinds of things people forget," or don't have time to purchase after work, Stoltzfus said.  

Stoltzfus believes that the vending machine is the first of its kind. Representatives from the two major breast-pump companies --  Medela and Ameda -- said they had not seen one before. Nor had other work life professionals who attended a recent conference hosted by Hopkins.

Hopkins -- the hospital, university and other affiliates -- has 14 dedicated nursing-mothers' rooms equipped with hospital grade pumps, so women don't have to lug a pump to work.  The rooms also have microwaves and refrigerators to sterilize equipment and store milk.

"It ties into our mission of retaining wonderful employees," Stoltzfus said.

She said she might add another machine at an additional Hopkins location if this one catches on, and she said other institutions have expressed interest in following suit.

Should more places have these vending machines available to the public? Comment below!

Source: baltimoresun.com

By TAMAR LEWIN

At home in Lisbon, a gay couple invited friends over to a birthday celebration, and at the end of the evening shared a surprise — an ultrasound image of their baby, moving around in the belly of a woman in Pennsylvania being paid to carry their child.

“Everyone was shocked, and asked everything about how we do this,” said Paulo, who spoke on the condition that neither his last name nor that of his husband, João, be used since what they were doing is a crime in Portugal.

While babies through surrogacy have become increasingly common in the United States, with celebrities like Elton John, Sarah Jessica Parker and Jimmy Fallon openly discussing how they started a family, the situation is quite different in Portugal — as it is in most of the world where the hiring of a woman to carry a child is forbidden. And as Paulo and João have discovered, even bringing home a baby born abroad through surrogacy can be complicated.

In an era of globalization, the market for children crosses national borders; witness the longtime flow of Americans who have gone overseas to adopt babies from South Korea, China, Russia and Guatemala.

Other than the United States, only a few countries — among them India, Thailand, Ukraine and Mexico — allow paid surrogacy. As a result, there is an increasing flow in the opposite direction, with the United States drawing affluent couples from Europe, Asia and Australia. Indeed, many large surrogacy agencies in the United States say international clients — gay, straight, married or single — provide the bulk of their business.

The traffic highlights a divide between the United States and much of the world over fundamental questions about what constitutes a family, who is considered a legal parent, who is eligible for citizenship and whether paid childbirth is a service or exploitation.

In many nations, a situation that splits motherhood between the biological mother and a surrogate carrier is widely believed to be against the child’s best interests. And even more so when three women are involved: the genetic mother, whose egg is used; the mother who carries the baby; and the one who commissioned and will raise the child.

Many countries forbid advertising foreign or domestic surrogacy services and allow only what is known as altruistic surrogacy, in which the woman carrying the baby receives payment only for her expenses. Those countries abhor what they call the commercialization of baby making and view commercial surrogacy as inherently exploitive of poor women, noting that affluent women generally do not rent out their wombs.

But while many states, including New York, ban surrogacy, others, like California, welcome it as a legitimate business. Together, domestic and international couples will have more than 2,000 babies through gestational surrogacy in the United States this year, almost three times as many as a decade ago. Ads galore seek egg donors, would-be parents, would-be surrogates. Many surrogates and intended parents find each other on the Internet and make their arrangements independently, sometimes without a lawyer or a formal contract.

The agencies that match intended parents and surrogates are unregulated, creating a marketplace where vulnerable clients yearning for a baby can be preyed upon by the unscrupulous or incompetent. Some agencies pop up briefly, then disappear. Others have taken money that was supposed to be in escrow for the surrogate, or failed to pay the fees the money was to cover.

Surrogacy began in the United States more than 30 years ago, soon after the first baby was born through in vitro fertilization in England. At the time, most surrogates were also the genetic mothers, becoming pregnant through artificial insemination with the sperm of the intended father. But that changed after the Baby M case in 1986, in which the surrogate, Mary Beth Whitehead, refused to give the baby to the biological father and his wife. In the wake of the spectacle of two families fighting over a baby who belonged to both of them, traditional surrogacy gave way to gestational surrogacy, in which an embryo is created in the laboratory — sometimes using eggs and sperm from the parents, sometimes from donors — and transferred to a surrogate who has no genetic link to the baby.

But thorny questions remain: How much extra will the surrogate be paid for a cesarean section, multiple births — or loss of her uterus? What if the intended parents die during the pregnancy? How long will the surrogate abstain from sex? If she needs bed rest, how much will the intended parents pay to replace her paycheck, and cover child care and housekeeping?

“The gestational carrier has to agree to follow medical advice, but there has to be some level of trust,” said Andrew W. Vorzimer, a Los Angeles surrogacy lawyer who advises on many arrangements that have gone awry. “Once everyone goes home and the doors are closed, there’s no way to really monitor what’s going on.”

Since the Baby M case, the common wisdom has been that the main risk for parents is the surrogate’s changing her mind. But Mr. Vorzimer, who has tracked problem cases in the United States over the years, said it was the reverse: Trouble most often starts with the intended parents. One intended mother decided, well into the pregnancy, that she could not raise a child that was not genetically hers. Another couple, after a divorce, offered the surrogate mother money to have an abortion.

Over the decades, Mr. Vorzimer said, there have been 81 cases of intended parents who changed their minds and 35 in which the surrogate did — 24 of them traditional surrogates who both provided the egg and carried the baby.

Surrogacy remains controversial, even in the United States, despite the rapid proliferation of clinics, doctors and agencies. When all goes well, supporters say, the arrival of a baby to parents with no other path to a biological child is an unparalleled joy.

Opponents tend to focus on the cases in which the surrogate suffers health problems or is abandoned by the intended parents, or in which the fetus has serious defects. Abortion politics hang heavily over the issue: Often, surrogacy involves twin or triplet pregnancies, with the possibility of selective reduction.

Critics sometimes draw an analogy to prostitution, another subject that raises debate over whether making money off a woman’s body represents empowerment or exploitation.

In Canada, as in Britain, payment for surrogacy is limited to expenses.

“Just like we don’t pay for blood or semen, we don’t pay for eggs or sperm or babies,” said Abby Lippman, an emeritus professor at McGill University in Montreal who studies reproductive technology. “There’s a very general consensus that paying surrogates would commodify women and their bodies. I think in the United States, it’s so consumer-oriented, so commercially oriented, so caught up in this ‘It’s my right to have a baby’ approach, that people gloss over some big issues.”

Germany flatly prohibits surrogacy, with an Embryo Protection Act that forbids implanting embryos in anyone but the woman who provided the egg. Ingrid Schneider of the University of Hamburg’s Research Center for Biotechnology, Society and the Environment said it is in children’s best interest to know that they have just one mother.

“We regard surrogacy as exploitation of women and their reproductive capacities,” Dr. Schneider said. “In our view, the bonding process between a mother and her child starts earlier than at the moment of giving birth. It is an ongoing process during pregnancy itself, in which an intense relationship is being built between a woman and her child-to-be. These bonds are essential for creating the grounds for a successful parenthood, and in our view, they protect both the mother and the child.”

With all that is known about adopted children’s seeking out their biological parents, other European experts say, it is wrongheaded to create children whose relationship with the woman who provided the egg or carried them will be severed.

Emotional and Financial Costs

The restrictions in many countries have been a boost for American surrogacy. For overseas couples, the big draw is the knowledge that many states have sophisticated fertility clinics, experienced lawyers, a large pool of egg donors and surrogates, and, especially, established legal precedent.

“We chose the United States because of the certainty of the legal process,” said Paulo, an engineer and scrub nurse. “Surrogacy is very secretive in Portugal. People don’t talk about surrogacy, and it’s hard to get any information. In the United States it is all clear.”

But it is not cheap. International would-be parents often pay $150,000 or more, an amount that rises rapidly for those who do not get a viable pregnancy on their first try. Prices vary by region, but surrogates usually receive $20,000 to $30,000, egg donors $5,000 to $10,000 (more for the Ivy League student-athlete, or model), the fertility clinic and doctor $30,000, the surrogacy agency $20,000 and the lawyers $10,000. In addition, the intended parents pay for insurance, fertility medication, and incidentals like the surrogate’s travel and maternity clothes.

Because surrogacy is so expensive in the United States, many couples travel to India, Thailand or Mexico, where the total process costs half or less. But complications have arisen — as in the case of a couple stuck in India for six years, trying to take home a baby boy, whom genetic testing had found not to be related to them, apparently because of a mix-up with the sperm donation.

Four years ago, according to Stuart Bell, the chief executive of Growing Generations, a Los Angeles surrogacy agency, only about 20 percent of its clients came from overseas, but now international clients are more than half. Other agencies report the same trend.

“Anyone who can afford it chooses the United States,” said Lesa A. Slaughter, a fertility lawyer in Los Angeles.

Some lawyers who handle surrogacy tell of ethical problems with intended parents from abroad. Melissa Brisman, a New Jersey lawyer who handled Paulo and João’s surrogacy, had a prospective client from China who wanted to use five simultaneous gestational surrogates. She turned him down.

Mr. Vorzimer, in California, had an international client who wanted six embryos implanted.

“He wanted to keep two babies, and put the rest up for adoption,” Mr. Vorzimer said. “I said, ‘What, like the pick of the litter?’ and he said, ‘That’s right.’ I told him I wouldn’t work with him.”

Probably the most agonizing cases, though, are those in which the intended parents and the surrogate do not agree on what to do about a fetus with severe defects.

Heather Rice, an Arizona mother of three, said her first surrogacy was “an experience so great I knew I wanted to do it again.” She had a very different experience the second time, when, after two miscarriages, a routine ultrasound showed that the 21-week-old fetus had a cleft in his brain.

“Mom walked out of the room, left me lying there, and I thought: ‘This is not my baby. I should not be dealing with this by myself,' ” she said. “But I told Mom, ‘I’ll respect your decision, whatever you decide, because this is your baby.’ A couple days later, they called and told me they didn’t want their little boy so I should get an abortion.”

With only days left before an abortion would become illegal under Arizona law, Ms. Rice found herself unwilling to kill the fetus.

“I think my motherly instincts kicked in when they didn’t want him,” she said. “I told them I just couldn’t do it. Dad told me God was going to punish me for disobeying them.”

Ms. Rice found a woman whose child had the same condition who wanted the baby. And on the 28-week ultrasound, the brain looked somewhat better. When Ms. Rice called and told the intended parents that someone would take the baby, they said they had decided they wanted him after all. At the delivery, though, the mother did not show up.

“When I called, she said Dad had been in the waiting room all night,” Ms. Rice said. “I was crying. I said he has to come in; he’s the father; he should be here. He came in, he cut the cord. He took the baby. And that’s the last I ever heard from them.”

Ms. Rice said she had no idea how the baby was doing, or even whether his biological parents had kept him.

“I found them on Facebook, and there’s no trace of him, so I think they gave him up for adoption,” she said. “I don’t know where he is, and it kills me every day.”

“I love being pregnant, but I don’t want to have any more children — oh, getting up in the middle of the night; oh, day care; oh, I’m done,” she said. “It’s great to see Thomas and Dennis with Nico, and how excited they are about twins. The money is nice, but we could manage without it, and it’s not why I’m doing this.”

Undeterred by Local Laws

For the Portuguese couple, the journey began when Paulo saw a television report about surrogacy, showing a gay couple who were unidentifiable in the shadows. The next day, he went to the television studio to ask how to find the two men. The producer would not share their names, but on rewatching, Paulo and João saw the name of the Connecticut fertility clinic.

Two years later, they were in a hotel in central Pennsylvania for the birth of their son, Diogo. His American passport had arrived. The bittersweet farewell dinner with the surrogate and her family was over, and the flight home was booked for the next day. All that was left to do was gaze at their sleeping baby, angelic in his white onesie, his starfish hands extended.

“It’s like a miracle,” said Paulo. “I cried when I saw the flight booking on the computer. I said: ‘Look, João. It’s not us two anymore. We are three.' ”

Getting to three was long, stressful and expensive, with problems at almost every turn — and one large hurdle remaining, as they apply for Diogo’s Portuguese citizenship.

After speaking to the Connecticut clinic, they chose a surrogacy agency that asked them to wire $100,000 up front. On the verge of sending the money, João decided that was too much. Without telling Paulo, he went back to his online research, and discovered complaints against that agency. Their second agency did not work, either: After months of back and forth, the agency turned them down, apparently because of concerns over their finances.

“They wasted almost a year of our time,” Paulo said.

Even with an agency they praise as responsible and responsive — an agency owned by Ms. Brisman, the New Jersey lawyer — obstacles continued. Their first donor’s eggs did not produce a pregnancy. The second had a genetic disorder that did not show up in the initial paperwork. A third produced a good supply of eggs, but after the first embryo was implanted, the surrogate miscarried. Their next surrogate did not get pregnant on the first try.

Through it all, the bills mounted. João and Paulo said they planned to burn them so their son would never have to think about the price, which they acknowledged was hundreds of thousands of dollars.

They have also decided not to answer any questions about which of them is the father — embryos that were inseminated by each were implanted — unless Diogo is the one asking.

“The information belongs to him,” Paolo said.

In the end, their warm relationship with the woman who bore their child was about the smoothest part of the process. The night before they were to take Diogo home, she sent an emotional text: “I know I’m doing well because I haven’t cried yet,” she said. “But I know I will.”

João and Paulo, like most international couples using an American surrogate, want their baby to be a citizen of their home country. But many Chinese parents take a different tack, keeping the American citizenship automatically conferred on every baby born here. Some hope the baby will attend an American university or help the family to live and work in the United States. But for Chinese clients, too, overseas surrogacy carries a complication, making it difficult for the baby to get a hukou, or household registration card, granting access to local schools and hospitals.

And there is another issue in China: restrictions on the number of children per family. Some Chinese couples, particularly older couples, turn to American surrogacy for a second child, whose American citizenship might clear the family from scrutiny.

But most surrogacy agencies say they will work only with intended parents who cannot carry their own baby, as recommended by the guidelines of the American Society for Reproductive Medicine. So Chinese clients who seek an overseas surrogate to get around the one-child rule create a dilemma.

“We usually only take clients who have a medical need for surrogacy, but in December, we decided to bend that rule, for Chinese people, government officials, who would be in trouble if they break the one-child rule,” said Karen Synesiou, chief executive of the Center for Surrogate Parenting, in Encino, Calif. “We’re thinking of it as political surrogacy.”

Then, too, agencies and lawyers say, there has been a recent uptick in the number of clients seeking “social surrogacy” — that is, having someone else carry their baby so as not to damage their career, or their figure. And not all agencies follow the guidelines.

“We don’t feel like we should be the gatekeepers when it comes to that,” said Saira Jhutty, chief executive of Conceptual Options, a California agency.

Final Hurdles at Home

For all the intimacy of carrying a baby for someone else, there is no template for the relationship between intended parents and the woman who will bear their child. Most contracts contain a clause requiring confidentiality unless both parties agree otherwise. And most stipulate that there will be an abortion if the fetus has serious defects, or a reduction in case of triplets or quadruplets. While no court would force a woman to have an abortion, lawyers say, a surrogate who refused to honor the agreement, and proceeded to carry a baby to term against the intended parents’ wishes, could perhaps be made to pay the costs of rearing the child, under the legal concept of wrongful birth. As surrogacy spreads, lawyers say, litigation over such issues may erupt.

For those from abroad, getting an American-born baby home can involve tangled immigration problems. Some countries require a new birth certificate, a parental order or an adoption. Some will not accept an American birth certificate with two fathers listed as the parents. Occasionally, a baby can be denied entry into the parents’ home country.

But international law is catching up with social practice: On June 26, in a case involving two sets of children born to American surrogates, the European Court of Human Rights ruled that France had violated the European Convention on Human Rights, and undermined the children’s identity, by refusing to recognize their biological father as their legal parent, easing the way to French citizenship.

The decision will most likely smooth the path for Paulo, João and their son, who entered Portugal on his American passport. So far, efforts to register Diogo in Portugal have failed, because the Portuguese process requires that a mother be named. Meanwhile, they have been advised to seek a residence card for him.

“They told us to wait three months for an answer,” Paulo said in a recent email. “We still do not know how this will end.”

Source: nytimes.com

By Peggy Eastman

In an unusual and powerful educational session held on the last day of the American Society of Clinical Oncology Annual Meeting, three oncologists shared what they have learned from their personal experiences with cancer, and how what they have learned has improved their practices.

“It's very difficult to speak about these issues in a public forum,” said session moderator Teresa A. Gilewski, MD, an oncologist in the Department of Medicine at Memorial Sloan Kettering Cancer Center, who has organized and led several innovative sessions at ASCO meetings over the years. She thanked the speakers for being willing to share their personal stories with the ASCO audience despite the strong emotions their stories clearly triggered in all those in the room.

The first to speak, Andrew S. Artz, MD, MS, Associate Professor of Medicine and Clinical Director of Hematopoietic Cellular Therapy at the University of Chicago Medical Center, related how his three-week-old daughter displayed a tumor in her left eye, and a suspicious area in her right eye, first detected by his wife. They obtained an immediate referral to a pediatric ophthalmologist from the baby's pediatrician.

The diagnosis after genetic testing was that the tumor was advanced retinoblastoma due to a mutation (based on her young age and two unaffected older siblings). The baby's rare cancer was a shock; he noted that there was no history of cancer in his family.

“It was a drastic transformation for me,” said Artz of the experience with his baby. “I never realized how anxiety-provoking the word ‘suspicious’ was until you're faced with ‘suspicious’ yourself.”

Artz and his wife were offered three treatment options, one of which was immediate enucleation of the left eye, and one of which was an investigational intra-arterial chemotherapy treatment approach, which was initially discouraged by the specialists they consulted.

“Remember, I'm already at a university; these are my colleagues,” he said. While being at a major medical center was an advantage, it also presented a delicate balancing act in terms of seeking additional opinions on his daughter's cancer. Ultimately, he and his wife chose the investigational retinoblastoma treatment following systemic chemotherapy. The baby had a recurrence one year later, which was treated with intravitreal chemotherapy; and she is now fine, yet will continue to have a lifelong increased risk of cancer.

Artz said he has learned a great deal from his personal experience about how oncologists can better help cancer patients cope: “To us it's a stage; but patients want to tell you about how it was diagnosed,” he said. In short, they want to tell their story to the oncologist. “That initial experience [with a patient] paints a canvas of who you are.”

Now, in his practice, he said, “I am more humble and more patient-centric; I am more willing to offer non-cancer related advice [on caregiving and caregivers, for example]. In addition, “I ask for feedback from patients, and I schedule more time for new patients.”

He offers this advice to oncologists: “Don't try to walk in a patient's shoes, just make the shoes fit better.” From his own experience, Artz has also developed specific suggestions for oncologists on interacting with cancer patients and their families (see box, next page).

In the summer of 2006, the late neurosurgeon Kelvin A. Von Roenn, MD—known for his dedication to training young residents in the art and science of neurosurgery—began to show serious and ominous physical symptoms. “I thought I knew a whole lot about grief until I experienced it myself,” said his wife, Jamie H. Von Roenn, MD, Professor of Medicine at Northwestern University's Feinberg School of Medicine and ASCO's Senior Director of Education, Science, and Professional Development.

Her husband had fatigue, nausea, a decrease in appetite, renal failure, and a bilateral ureteral obstruction; his diagnosis was undifferentiated small cell carcinoma of the renal pelvis. His blood urea nitrogen (BUN) level rose to 100, and he had dialysis and chemotherapy and underwent a nephrostomy. His wife knew too well that his prognosis was poor.

“He was kind of a stubborn ‘I can do anything’ kind of guy,” she said. She told his oncologist, “He wants it straight.” The treating oncologist told the Von Roenns that Kelvin (who had brain metastases) had perhaps six months to a year to live. As an oncologist, “I knew it couldn't be that long, but I wanted to believe it,” said Jamie Von Roenn; her husband died in October 2006 at the age of 56.

At the time of diagnosis, the Von Roenns had been married for nearly 28 years; their three children were 14, 16, and 22.

After his diagnosis, the Von Roenns, who were in the habit of going out on a date every Saturday night, sat on their bed and cried. “That night was the only time he cried,” Jamie Von Roenn remembered. “He wasn't up to going down and talking to the kids, so I did.”

Through her personal experience with her husband's incurable cancer, Jamie Von Roenn said she has learned many lessons or had ones she already knew reinforced. The first was that “even in an excellent hospital, it's stunning to me how terrible the care can be... if I wasn't there, he would not have been OK.”

The second was that most patients want the truth about their disease: “It undermines the hope people have when you don't tell them the truth,” she said, because it prevents them from making the most of the time they have left.

The Von Roenns chose hospice care at home, which she calls “good in the midst of bad.” Kelvin Von Roenn was cared for on the first floor of their home. “The most frightened I ever saw him was when he was tied in a wheelchair and we carried him downstairs,” she said.

During his last days, she and her husband went through what she calls the “five things” people need to say to each other when someone is dying: “I forgive you, forgive me, thank you, I love you, and goodbye.” One evening each of their children went in and talked to their father and went through the five things with him.

“We had our last days as a family,” said Jamie Von Roenn. Her husband's elderly mother managed to come to see him, since he could not go to her. Her husband and she planned his funeral; “It makes a huge difference to know what someone wants,” she said. “He was determined in his last weeks of life to help me with financial things,” an area he had handled. When their financial advisor cried, Jamie Von Roenn decided, “This is the person who cares,” the one she wanted to turn to for help with money issues.

Perhaps the biggest lesson she learned was how to deal with grief personally after her husband's death, which she said has given her an increased appreciation for helping families deal with grief: “The signs and symptoms of grief are emotional, physical, behavioral, and cognitive.”

The cognitive symptoms include preoccupation, confusion, and an inability to concentrate. She described the major tasks of grief as:

“As grief decreases, acceptance increases,” she said. She defined acceptance as “a sense of inner peace and tranquility that comes with the letting go of a struggle to regain what has been taken away — The only way out of this is resilience; that's the way we restart our lives.”

When Alyssa G. Rieber, MD, was 21 and a first-year medical student at the University of Alabama School of Medicine, she was diagnosed with Stage II Hodgkin lymphoma. At the ASCO meeting, she told the audience that this personal experience has given her a valuable perspective on treating the patients she sees today as Assistant Professor in the Department of General Oncology, Division of Cancer Medicine, at the University of Texas MD Anderson Cancer Center.

While a medical student, Rieber underwent four months of chemotherapy and then radiation, managing to continue on with her classes.

Unmarried at the time of diagnosis, Rieber learned how it feels to be a patient. Her mother, who did not cook, “started cooking like crazy,” Rieber remembered, in order to fill her daughter with nutritious food. “She would cook and I would throw food away,” Rieber said. She lost her appetite and had a metallic taste in her mouth. “I lost my hair, and everybody was concerned.” She resorted to wigs, “which are always too hot and itchy, and you end up wearing a hat anyway,” she remembered.

Rieber, now married with two young daughters, said that today when she interacts with families as an oncologist she tries to bring “honesty, empathy, encouragement, and hope.” She noted that “being able to talk to the person [oncologist] as someone who's gone through this is very helpful,” and that “Sometimes hope is all we have to offer to get them through the day.”

She said her experience as a cancer patient has helped her better understand the following:

• The family response to a loved one's diagnosis of cancer brings shock, fear, and anxiety for everyone, and coping is different for everyone;
• Family members have a heightened sense of their own mortality;
• There may be a concern among some family members that cancer can be “caught,” especially among children (who need a careful explanation on their own level that cancer is not infectious);
• The time to treatment seems extremely long to families, who have a sense of urgency; this requires taking the time to give an explanation of the steps needed to determine the best treatment before therapy can begin;
• The family has concerns about the cancer patient's physical changes, such as weight loss, which can lead to battles over nutrition—wanting to feed the patient when he or she has no appetite and cannot eat. “I tell the patient, ‘Drink a shake,’ and I tell the family, ‘Back off,’” Rieber said;
• The end of treatment doesn't necessarily mean a return to normalcy: “Just because treatment is over, that doesn't mean patients are back to ‘normal.’ Many people don't just bounce back,” Rieber said;
• The end of treatment does not mean the end of worry, and of “the anxiety that never goes away.” The cancer survivor may feel that “every little lump is cancer until proven otherwise. The patients will have that forever.”

Source: http://journals.lww.com/

By AP/ Danny Johnston

LITTLE ROCK, ARK. A south Arkansas woman celebrated her 116th birthday Friday with cake, a party and a new title - she's now officially the oldest confirmed living American and second-oldest person in the world, the Gerontology Research Group said.

Gertrude Weaver spent her birthday at home at Silver Oaks Health and Rehabilitation in Camden, about 100 miles southwest of Little Rock. This year's festivities included the new award from the Gerontology Research Group, which analyzed U.S. Census records to determine that Weaver is the oldest living American, rather than 115-year-old Jeralean Talley, who was born in 1899.

The research group, which consults with the Guinness Book of World Records, found that the 1900 Census listed Weaver as 2 years old - putting her birthday in 1898, said Robert Young, the research group's database administrator and senior consultant for Guinness.

That makes Weaver the second-oldest person in the world behind 116-year-old Misao Okawa of Japan and the 11th oldest person of all time, he said.

"Normally, 116 would be old enough to be the world's oldest person," Young said. "There's kind of heavy competition at the moment."

Weaver was born in southwest Arkansas near the border with Texas, and was married in 1915. She and her husband had four children, all of whom have died except for a 93-year-old son. Along with Census records, the Gerontology Research Group used Weaver's 1915 marriage certificate, which listed her age as 17, to confirm her birth year, Young said.

Although no birth record exists for Weaver, she celebrates her birthday each year on July 4 and did the same this year. At her 115th birthday party last year, Weaver was "waving and just eating it all up," said Vicki Vaughan, the marketing and admissions director at Silver Oaks.

"Most people want to know, `Well, can she talk?'" Vaughan said. "Her health is starting to decline a little bit this year - I can tell a difference from last year, but she still is up and gets out of the room and comes to all of her meals, comes to activities. She'll laugh and smile and clap."

Weaver first stayed at the Camden nursing home at the age of 104 after she suffered a broken hip, Vaughan said. But Weaver recovered after rehabilitation and moved back home with her granddaughter, before returning to the nursing home at the age of 109.

Scientists study the very old for clues about longevity, including genetic, lifestyle,and environmental factors.

Weaver cited three factors for her longevity: "Trusting in the Lord, hard work and loving everybody."

"You have to follow God. Don't follow anyone else," she told the Camden News this week. "Be obedient and follow the laws and don't worry about anything. I've followed him for many, many years and I ain't tired."

Source: cbsnews.com

By JANE E. BRODY 

Pregnancy, or the desire to become pregnant, often inspires women to take better care of themselves — quitting smoking, for example, or eating more nutritiously.

But now many women face an increasingly common problem: obesity, which affects 36 percent of women of childbearing age. In addition to hindering conception, obesity — defined as a body mass index above 30 — is linked to a host of difficulties during pregnancy, labor and delivery.

These range from gestational diabetes, hypertension and pre-eclampsia to miscarriage, premature birth, emergency cesarean delivery and stillbirth.

The infants of obese women are more likely to have congenital defects, and they are at greater risk of dying at or soon after birth. Babies who survive are more likely to develop hypertension and obesity as adults.

To be sure, most babies born to overweight and obese women are healthy. Yet a recently published analysis of 38 studies found that even modest increases in a woman’s pre-pregnancy weight raised the risks of fetal death, stillbirth and infant death.

Personal biases and concerns about professional liability lead some obstetricians to avoid obese patients. But Dr. Sigal Klipstein, chairwoman of the committee on ethics of the American College of Obstetricians and Gynecologists, says it is time for doctors to push aside prejudice and fear. They must take more positive steps to treat obese women who are pregnant or want to become pregnant.

Dr. Klipstein and her colleagues recently issued a report on ethical issues in caring for obese women. Obesity is commonly viewed as a personal failing that can be prevented or reversed through motivation and willpower. But the facts suggest otherwise.

Although some people manage to shed as much as 100 pounds and keep them off without surgery, many obese patients say they’ve tried everything, and nothing has worked. “Most obese women are not intentionally overeating or eating the wrong foods,” Dr. Klipstein said. “Obstetricians should address the problem, not abandon patients because they think they’re doing something wrong.”

Dr. Klipstein is a reproductive endocrinologist at InVia Fertility Specialists in Northbrook, Ill. In her experience, the women who manage to lose weight are usually highly motivated and use a commercial diet plan.

“But many fail even though they are very anxious to get pregnant and have a healthy pregnancy,” she said. “This is the new reality, and obstetricians have to be aware of that and know how to treat patients with weight issues.”

The committee report emphasizes that “obese patients should not be viewed differently from other patient populations that require additional care or who have increased risks of adverse medical outcomes.” Obese patients should be cared for “in a nonjudgmental manner,” it says, adding that it is unethical for doctors to refuse care within the scope of their expertise “solely because the patient is obese.”

Obstetricians should discuss the medical risks associated with obesity with their patients and “avoid blaming the patient for her increased weight,” the committee says. Any doctor who feels unable to provide effective care for an obese patient should seek a consultation or refer the woman to another doctor.

Obesity rates are highest among women “of lower socioeconomic status,” the report notes, and many obese women lack “access to healthy food choices and opportunities for regular exercise that would help them maintain a normal weight.”

Nonetheless, obese women who want to have a baby should not abandon all efforts to lose weight. Obstetricians who lack expertise in weight management can refer patients to dietitians who specialize in treating weight problems without relying on gimmicks or crash diets, which have their own health risks.

Weight loss is best attempted before a pregnancy. Last year, the college’s committee on obstetric practice advised obstetricians to “provide education about possible complications and encourage obese patients to undertake a weight-reduction program, including diet, exercise, and behavior modification, before attempting pregnancy.”

An obese woman who becomes pregnant should aim to gain less weight than would a normal-weight woman. The Institute of Medicine suggests a pregnancy weight gain of 15 to 25 pounds for overweight women and 11 to 20 pounds for obese women.

Although women should not try to lose weight during pregnancy, “a woman who weighs 300 pounds shouldn’t gain at all,” Dr. Klipstein said. “This is not harmful to the fetus.”

Dr. Klipstein also noted that obesity produces physiological changes that can affect pregnancy, starting with irregular ovulation that can result in infertility.

Obese women are more likely to have problems processing blood sugar, which raises the risk of birth defects and miscarriage. There is also a greater likelihood that their baby will be too large for a vaginal delivery, requiring a cesarean delivery that has its own risks involving anesthesia and surgery.

The babies of obese women are more likely to develop neural tube defects — spina bifida and anencephaly — and to suffer birth injuries like shoulder dystocia, which may occur when the infant is very large.

High blood pressure, more common in obesity, can result in pre-eclampsia during pregnancy, which can damage the mother’s kidneys and cause fetal complications like low birth weight, prematurity and stillbirth.

It is also harder to obtain reliable images on a sonogram when the woman is obese. This can delay detection of fetal or pregnancy abnormalities that require careful monitoring or medical intervention.

Source: http://well.blogs.nytimes.com/

By GILLIAN MOHNEY

Ronnie and Donnie Galyon are eagerly awaiting a major milestone this Saturday. Even though it’s not the conjoined twins’ birthday, the duo plans to celebrate turning 62 years, 8 months and 7 days old with a big block party.

The reason for the celebration? The date means they will have lived longer than the original “Siamese Twins,” Chang and Eng Bunker, who became famous as a sideshow act in the 1800's.

“Put it this way -- I’m stoked,” Ronnie Galyon, 62, told the Denton Daily News.

Ronnie and Donnie Gaylon were born in 1951 and live with their younger brother, Jim Galyon, and his wife in Beavercreek, Ohio. The Galyon twins are joined from the breastbone area to the pelvis and spent their first months on Earth in the intensive care unit.

“They weren’t even expected to live the first day, let alone get out of the hospital, let alone live 62 years,” said Jim Galyon. “This has been a life-long goal to meet and beat the Bunker twins. It means the world to them.”

After growing up, the pair performed in carnival sideshows and circuses until they retired in 1991, according to the Associated Press. The Galyon twins lived on their own after retirement, although they moved just a few houses down from their brother so that he could help them. The twins moved in with their younger brother after they became deathly ill following a viral infection and were in the intensive care unit with various health problems, including blood clots in Ronnie’s lungs.

With the help of the community and the Christian Youth Corps, Jim Galyon was able to build an addition on his house and make it handicap accessible. He and his wife now care for his brothers 24 hours a day.

“[They] have their own totally different personalities,” said Jim Galyon. “Donnie can be very serious and reserved; Ronnie is very happy-go-lucky.”

While the duo is excited for the party on Saturday, they’re really anticipating their next birthday. This October the twins will turn 63, breaking the record for the oldest pair of conjoined twins, according to Guinness World Records.

The twins have been excited about breaking the official record for years.

“It’s what me and Donnie always dreamed about, and we hope to get the ring, because we’ve dreamed about getting this since we were kids,” Ronnie Galyon told the Denton Daily News.

As the Galyon twins plan to make history, their family is working on compiling a history of the twins’ former life on the road. They’re asking anyone who might have seen Ronnie and Donnie Galyon in their circus days to can contact the Galyon family at Worldsoldestconjoinedtwins@gmail.com.

Source: abcnews.go.com