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IF GOD IS in prayer-answering mode, 6-year-old Weston Keeton will soon be sleeping in something other than a hospital bed.
It won't be his own bed, since home is in Tennessee. But it will be a welcome change from the one at Children's Hospital of Philadelphia, where he has lived for 17 months.
Back in June 2011, Weston's parents, Julie and Adam, had no idea that CHOP would be Weston's home for so long. All they knew was that their then-4-year-old, who'd undergone many surgeries to address multiple heart defects, had gotten very sick and needed to be seen by specialists at CHOP. So they packed up Weston and his five brothers and sisters and drove to Philly, expecting to return home in a week with a medical game plan.
Instead, they learned that Weston needed a new heart and lungs. And if he weren't admitted immediately to CHOP for stabilization, his prognosis was dire. Weston's wait for organs could be lengthy and, because his health was so fragile, he'd need to remain at CHOP until the transplant.
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The news sent the family into free fall. Life for Adam and Julie - sweethearts who met at Julie's 21st birthday party (they are both now 30) - revolved around their family, which was about to get bigger: Julie was two months' pregnant. Moving the entire clan to Philly was out of the question, since Adam's job as a crane-and-boom-truck operator came with a good paycheck and health insurance they could not afford to lose.
So Julie stayed in Philly, eventually moving into the Gift of Life Family House, the new 30-room hotel at 4th and Callowhill streets for transplant patients and their families. The room rates are a pittance compared with city hotels'; for guests in real need, the rooms are often practically free.
In January, Julie gave birth to Ellie, and brought her "home" to Gift of Life.
"It's the only home she's ever known," says Julie, whose eldest child, Easton, 7, has joined her, Weston and the baby in Philly. Adam juggles work and child care in Tennessee with the help of family.
Julie and the kids spend their days at CHOP, where Weston's large, single room holds not just his bed but shelves of toys and books, a playpen and bassinet for the baby, and a work area for Easton, who is home-schooled. It is warm, colorful and friendly. And each CHOP staffer - medical people, social workers, child-life specialists - is more caring than the next.
But a hospital is not a home. Neither is the Gift of Life Family House, but it's close. Julie, Easton and Ellie share a large room there, and the house has ample amenities - a full kitchen, beautiful living areas and hot daily dinners - that at least mimic the best parts of home.
"If Weston could be with us at Gift of Life, things would feel more normal," says Julie. "I could rotate the other kids up here more often, because we wouldn't be spending every day at the hospital. They need Weston, they need me, we need them."
And Julie and Adam, it goes without saying, need one another.
When the family visited for Halloween, it was the first time all were together since July. The kids swarmed over Julie, hungry for their mom, and they scooped Ellie into their arms so often, she was overwhelmed.
"It was very hard when they left for home," says Julie quietly. "If we could get more time together, it would help all of us."
It's a tribute to Weston's superb care at CHOP that his health has stabilized enough that he is scheduled to be discharged next week to Gift of Life, armed with the medicines, oxygen, tubes and other medical accoutrements that keep him alive. He remains on a waiting list for a new heart and lungs.
On Wednesday, after hemming and hawing, Weston's insurer, Cigna, finally approved the cost of the pump devices he will need to receive care away from the hospital.
"Everything we have needed, there has been a holdup," says Julie. "And this is a good insurance plan."
The plan got better, she says, after Obamacare removed certain spending caps that, by now, would have sent the Keeton family into bankruptcy.
"Weston's medical bills are in the millions," Julie says. "Adam and I could work 24 hours a day, and we'd still never be able to pay it."
Now, though, is a time to ponder miracles, not impossibilities. Next week, Julie will bring her little boy to the Gift of Life Family House, read him a good-night story and tuck him into a normal bed, for the first time in 17 months.
Just like at home.
To help the Keeton family, go to http://cotaforwestonk.com
Contact Ronnie Polaneczky at polaner@phillynews.com or 215-854-2217. Follow her on Twitter @RonniePhilly. Read her blog at philly.com/ronnieblog, or for recent columns go to philly.com/Ronnie.
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Testing pain killers on humans could save money and speed the arrival of new drugs
Friday, November 9, 2012Deliberately inflicting carefully controlled painful stimuli on human volunteers and seeing how well specific drugs reduce the feeling of pain can be an effective way of testing new drugs. So conclude two researchers who reviewed the available literature on these types of tests in a paper published in the British Journal of Pharmacology.
Pain is important. It acts as an alarm mechanism, warning us that something is about to cause physical damage. It could be triggered by something physical like a cut or bruise, or a temperature driven stimulus such as extreme heat or cold. It could be caused internally by injuries where nerves get trapped. Pain can also become a long-term sensation that lasts long after the damage has occurred. In this case it is referred to as 'chronic' pain, and this can be particularly hard to treat.
The need to tackle pain is huge. A fifth of Europeans suffer from daily pain requiring treatment, with the proportion increasing in people over 70 years old. But pain control is still often insufficient or unsatisfactory because the available drugs fail to provide adequate relief or produce major side effects. Pain has therefore remained one of the major healthcare problems generating estimated socio-economic costs of $560-635 billion/year in the USA alone.
Finding new drugs is complicated because you can't measure pain directly. In animal models you have to watch animals as they respond to stimuli, and in human trials you have to get individuals to report how they feel. On top of this, the body has a number of different ways of detecting pain- generating stimuli, and each mechanism is likely to respond to a different set of pain-killing drugs.
Based in Frankfurt am Main, Germany, Bruno Georg Oertel and J?rn L?tsch started out with a theory. "We thought that if a pain-relieving drug was effective in a particular experimental pain model and also in a specific type of clinical pain, then the experimental model should be predictive for the particular clinical setting," says L?tsch, who works in the Institute of Clinical Pharmacology at the Goethe-University.
They found that overall, human experimental pain models were able to predict how well a drug worked in patients better than previously realised. "Not using these pain models in drug development seems to be unjustified ? in fact they should be used routinely in drug development programmes," says Oertel, who works in the Fraunhofer Project Group for Translational Medicine and Pharmacology (TMP), an initiative supported by the Hessian Excellence Initiative ("LOEWE") that runs at the junction between pharmacological research in academia and in the pharmaceutical industry.
The process isn't simple though as not every model can predict every clinical setting. "However, by analysing the way that drugs work in experimental and clinical settings, we identified that different sets of experimental pain models, rather than single models, may be best suited to provide cost-effective yet predictive studies in analgesic drug development," says L?tsch.
"It is difficult and unusual to undertake truly translational research in pharmacology. Here, J?rn L?tsch and Bruno G. Oertel have focused on experiments on humans to bridge the gap between animal research and clinical pharmacology. The review examines how well clinical analgesia is predicted by human experimental pain models, with a view to guiding model selection in phase I studies. The authors identify important disparities between drug effects on experimental and clinical pain. This will help inform thinking on the refinement of human and animal models of pain, ultimately helping the pharmaceutical industry bridge the translational gap in the pain field," says Editor-in-Chief of the British Journal of Pharmacology, Professor Ian McGrath.
More work is needed before this approach is fully ready to use, but the researchers believe this could lead to a more cost effective approach that can help scientists gain valuable information about the ways new drugs are working.
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Wiley: http://www.wiley.com/wiley-blackwell
Thanks to Wiley for this article.
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