(Hospitals/Healthcare; Managed Care; Medical / Dental; Medical Devices; Medical Research; Pharmaceuticals; Studies)

Hospitals/Healthcare

[August 2005] CarePages is a new web-based service available to hospitals to help families communicate with friends and relatives about those hospitalized. On the CarePages hompage, it is described as "a personalized, private homepages for people facing hospitalization, chronic illness, pregnancy or extended care." It is structured to allow people to post and receive news updates, post emails, and share sensitive information with a lot of people all at once.

It's a way of communicating, and it is a way of coping and sharing questions, concerns, hopes and dreams. Not many people are aware of this free service, and we'd like to do our part to spread the word about this exceptional source of emotional support for patients and families. For more information about how you can help, please contact CareerPages.

Friends of ours--Craig and Jackie, have graciously allowed us to share their son's story. One year ago today, their 2 year old son Parker was diagnosed with leukemia. Here is a portion of their story, including their last two web updates which they share with friends and family on Parker's website:

August 25, 2005 Anniversary. August 25th is the one-year anniversary of the day that Parker was diagnosed with leukemia. Our family calendar from this time last year is a memorial to a future that never happened, a record of modest plans for pleasure that turned out to be as unattainable as a trip to the moon. Instead of the weekend get-together that we had planned with our friends Jody and David we were with Parker at Children’s Hospital, scared, sleepless, wired on adrenaline, too numb to think clearly. Parker was scheduled to join a regular Monday playgroup the following week, but a nurse carefully explained that he should be isolated from other children and that Mondays would be his regular day at the clinic for chemotherapy.

One year ago today a small army of white-coated oncologists explained that malignant cells had taken over Parker’s blood and marrow and would kill him unless they were stopped. There was a 70% chance that intense chemotherapy and radiation would kill the malignant cells but they would also decimate the healthy ones. There was no telling how much short and long term damage the treatment itself would cause.

Heretofore all our parenting choices had been fairly easy. Natural childbirth or C-section, breast milk or formula, paper diapers or cloth. We were completely unprepared to be told that there was a war going on in our child’s body and that we had no choice but to proceed immediately with toxic chemotherapy because the alternative was certain death. Numbly we longed for an option we could live with.

No alternative was forthcoming. So, like good soldiers, we have followed the doctor’s orders. But a profound sense of dereliction of parental duty comes from participating in a process that is so manifestly harmful to one’s cherished child. Virtually all parents of children with cancer fantasize at one time or another about grabbing the child and running from the hospital, never to return.

We owe our emotional survival to Parker’s astonishing capacity for forgiveness. We have asked him to tolerate a lengthy series of truly yucky procedures, the necessity of which is completely incomprehensible to a toddler. After a year of this he still looks at us with limitless love shining in his eyes. His faith in us gives us the strength to live with the pain of being unable to protect him from this too-early confrontation with his own mortality.

Lately, though, Parker has had good reason to believe that things may be lightening up a little. Eleven months of ultra-strength chemo are complete, and the new daily lower-dose “maintenance” chemo is less debilitating. For the first time he feels well enough to play by himself, to run hard, to compete with his very surprised big brother. Parker is enjoying foods he has rejected for a year, trying ice cream and candy and finding they taste good again. This past week he has started singing happy little songs to himself as he wandered around the house. We realized we’ve never heard him sing before.

Parker seems ready to put behind him the long days when he needed to be held in our arms to soothe the aching of his body, and the weakness that came when his appetite was obliterated by nausea and fatigue. A fine downy fuzz has recently started growing all over his smooth bald head. It looks amazingly like tiny blades of grass trying their best to sprout on a bare field where a mighty battle has been fought.

August 22, 2005: A New Phase. For the last eleven months we have spent one or two days a week taking Parker to the clinic at Children’s Hospital of Los Angeles for chemotherapy. We’ve gotten very familiar with the hour-long drive east on Sunset boulevard in the early morning, driving away from the ocean, past OJ Simpson’s old house, past the pink walls of the Beverly Hills Hotel, past the Hustler retail store on Sunset Strip, past the Dianetics pyramid on the corner of Sunset and L. Ron Hubbard Drive. It’s a gawker’s tour of L.A. that ends in the oncology clinic on the fifth floor where enormous windows in the playroom frame a picture-postcard view of the Hollywood sign. Eleven months ago we tried hard not to stare at the bald children, the children in wheelchairs, the children hooked up to IV poles hung with bags of blood or bright-colored chemo drugs. Eleven months later we are incapable of staring because the scene is so familiar that it seems quite ordinary. And besides, Parker is as bald as a billiard ball, so we have come to see it as a debonair sort of look, rather stylish and au courant.

From now on we’ll only go to the clinic for chemo about once a month. Starting a little over a week ago, most of Parker’s chemo will be given to him at home, orally. He’ll get three different chemo drugs in varying combinations, 103 doses total, spread over a 77- day course, “rest” a week, then repeat. The 77 day course will repeat eleven times, so all we have to do is crush up a few pills into cherry syrup and get Parker to swallow them …1,133 times. Simply back it up with 6,617 separate doses of supportive medications to minimize the side effects of the chemo, and presto, we’re done. On our last visit, Parker’s oncologist cheerfully told us that she has calculated his last day of chemo should be December 13, 2007.

And how is Parker, the tiny tourist who has traveled to and from the clinic, awake or asleep, willing or not, every week for one third of his lifespan? He is thin and pale and bald, but he is still genial, still delighted to see his favorite nurses, even the ones who stuck needles in him on his last visit. The 27-pound embodiment of limitless optimism, Parker approaches each clinic visit as if this time it will be fun, despite a mountain of experience to the contrary. He’s the kind of kid who believes there has to be a pony in here somewhere.

We’re not scheduled to return to the clinic for chemo until two weeks from today. By then, the ménage-a-trois mannequins in the Hustler display window will probably be wearing the fall line of G-strings and tank tops. We have driven past the three of them (two female and one male) decked out in Halloween masks, in Santa hats, and in Uncle Sam striped top hats for the fourth of July, as a year’s worth of holidays have come and gone during this period of weekly treks to the clinic.

We don’t know what to expect in this new phase. Some children have a harder time with the oral chemo, some get new unpleasant side effects, but for many it is easier, less of an assault to the body. Some children get their hair and appetites back, as welcome as an old friend who relocated out of town but decided to move back to the neighborhood. We hear that some parents are lucky enough to re-find their sense of humor. It’s a new phase on the journey, but for now at least, we hope less of the journey will be spent cruising along the Sunset strip. We’ll keep you posted.

Update: December 14, 2007: The Measure of Our Days. This is Parker’s fourth Christmas season as a regular at the CHLA hematology-oncology clinic, the place where everybody knows his name. Nurses sound like doting aunties when they exclaim at how tall he’s grown, how much he’s changed since he first came to the clinic as a 21-month old toddler. Now Parker is five years old, a self-described super-hero who charms every adult in his path, ready to take on the world. Well, world, watch out. Parker Ehlers received his 91st round of IV chemo this week. That’s the LAST scheduled dose. He’ll finish oral chemo tomorrow (more doses under his belt than you can count). Treatment is over. The best gift that we’ll be receiving this Christmas is Parker, unmedicated, his own authentic self. Some time in the next few weeks Parker should start waking up in the morning feeling fine, no nausea, no aching, no numbness. You have to wonder how he’ll react to this novel feeling. He can’t remember back to a time when his system was clear of drugs. I’m not sure we remember back to a time before that, either. Three and a half years feels like eternity when your child is held hostage by cancer. Three and a half years of poisoning him to cure him. Inpatient stays and clinic days never passed quickly. Spinal taps and bone marrow biopsies never got any easier. It will feel very good to stop forcing ourselves to tolerate facilitating all these things. So, have we crossed the finish line into a safe place? When can we say Parker is “cured”? Optimistically we asked Parker’s oncologist. He replied “ask 20 oncologists that question and you’ll get 21 different answers.” Not the cheerful closure we were looking for, but we’ll settle for Dr. Tishler’s assessment that Parker’s prognosis is bright although it comes with no guarantees. That serves as an excellent reminder that none of us is guaranteed anything on this journey, we’re just doing our best to take care of one another as we go along. Parker and his big brother Jeffrey are a constant delight to us. They both laugh easily and often and clearly feel surrounded by love. Our family life is simpler and happier than most because to us any day not spent at the hospital is a very good day …we’re hoping for many, many good days. There aren’t enough words to express our gratitude to the people who have held us up during these years. We have received kindness and prayers beyond measure, poured out unceasingly. That has given us the strength to understand that although “perfect” and “safe” are not attainable on this earth; “love” and “hope” are what we really need to carry on. Wishing you buckets full of both this Advent, season of love and hope

Pharmaceuticals: Asthma in Children

According to a 2001 report in American Family Physician Vol. 63:1341, asthma affects nearly 5 million children in the United States. Asthma is now the most common chronic illness in children, affecting 1 in 15 persons under the age of 18. Asthma accounts for 3 million physician visits, 570,000 emergency department visits, 160,000 hospital stays, 8.7 million prescriptions, and 10 million missed school days per year for children under 15 years.

Many environmental factors can trigger asthma attacks, including allergens or irritants. On September 9, 2004, a relevant article on that subject appeared in the New England Journal of Medicine (Vol. 351:1068-1080), Results of a Home-Based Environment Intervention among Urban Children with Asthma. In a study of 937 children aged 5 to 11 years, representing seven major U.S. cities, they found that reductions in the levels of cockroach allergen and dust-mite allergen on the bedroom floor were significantly correlated with reduced complications of asthma. Another study in New Zealand reported that over 1 in 4 children with asthma at age 9, had wheezing that persisted from childhood to age 26 or that relapsed in adulthood after remission (New England Journal of Medicine, Vol 349:1414-1422 October 9, 2003 Number 15). The factors predicting persistence or relapse were sensitization to house dust mites, airway hyperresponsivenesss, female sex, smoking, and early age at onset.

Understanding environmental and other relevant factors, and taking medications to reverse or prevent bronchospasm in patients with asthma is important in the management of asthma. Proper diagnosis by a qualified physician, good communication and understanding of symptoms, complying with dosage instructions, understanding accompanying labels and supporting information, adhering to a treatment plan, and implementation of activities and countermeasures specific to the individuals situation, are all crucial to the management of asthma.

It is possible for a physician to prescribe an asthma management regimen to reduce symptoms, and control the disease so that even the youngest patient can take part in normal activities. The challenge for researchers is to help validate, educate and communicate what information is required from multiple perspectives, including those from pharmaceutical companies, doctors, care-givers, pharmacists, patients and parents. That challenge can be readily met with a combination of in-depth telephone interviews with doctors and patients and parents, and with follow-up ethnographic studies with families/patients and with doctors and medical staffs. Additional interviews with representatives from the pharmaceutical companies, managed care companies, and with pharmacists may be necessary on the front-end.

Using ethnographic research, we can learn what goes on in a “typical day” and explore what impacts patient behavior. It is becoming an important source of information about how patients actually use medicines and how they feel about their physicians, their diseases, and their current lifestyle. Those involved will gain insights they probably never before imagined. The process helps people understand what expectations patients have for medicines, how they take them, and what factors influence adherence to practitioners' recommendations, and even insights into behaviors that were never intended. The research provides insights into how how individuals handle their own illnesses through self-treatment as well as treatment by care providers.