Health crisis communications eased by Internet
Published 8:53 am Thursday, April 8, 2010
By KATHIE HEMPEL
Her sister Robynne’s cancer diagnosis in November was scary. When in January her nephew Cory’s tubing accident had him rushed to Indianapolis for two brain surgeries, it was heartbreaking. Then a few weeks later when his brother Devan was diagnosed with a brain stem tumor requiring surgery at a hospital in Ohio and a rare cancer – that was near devastating.
What can a family do? So many people want information. Family friends, coworkers, schoolmates added to the extended family make for so many phone calls; most can barely handle them, either emotionally or mentally.
Susan Miller had to do something. It is hard enough to sit idly by during one crisis let alone three in the same family in so short a time. She decided to organize a fundraiser to help the family out with the mountain of extra medical and travel expenses, but how to get the word out?
While today’s technology can be challenging and often annoying, the advent of such sites as Caring Bridge and social networking groups like Facebook are allowing those families stricken by catastrophic situations some respite.
Take the example of a friend in Godfrey, Ill. Betsy and Dale were married in 1991.
Within two weeks of the marriage she was to learn just how serious the cyclic neutropenia, her husband had been diagnosed with at 11, was.
The disease causes the white blood cell count to go down every three weeks, making it difficult for Dale to fight off infection at that time. The horribly lowered resistance lasted about a week each time it occurred and the disease had already claimed the life of one brother and a sister.
Still, the couple built a good life and were active in their church. By 1999 Dale was diagnosed with Henoch-Schonlein purpura, adding joint pain and gastrointestinal issues to his health problems. In 2007 a rare and lethal blood cancer attacked Dale’s already weakened system. He had a bone marrow transplant in an attempt to prolong his life, however, the stem cells rejected his body and they knew the end was inevitable.
Early in 2008, Betsy began posting their story and regular journal entries to CaringBridge.org. The site not only allowed her to keep everyone interested in Dale’s progress updated, but she could notify them of special events occurring to honor Dale. Those who wanted to extend their best wishes back to the couple could do so by signing in using the personalized guestbook.
When Dale was hospitalized, the hospital and ability to visit were posted. Late at night as Betsy kept vigil at his bedside, she could write out her thoughts and read the many messages pouring in on the site. It provided both comfort and relief.
Like Betsy, Susan is taking advantage of the resources offered by means of the World Wide Web. There is a Facebook event listing for the Wagner Nowacki Benefit Dinner to be held April 17 from 5 to 11 p.m. at the Elks Lodge in Niles. Not only can those interested in tickets for the spaghetti supper reserve them, but they receive notice from those making donations for the silent auction.
Word of the event spreads as those who hear of it post the item on their own Facebook events pages. This is the new “word of mouth” over the back fence system of the 21st century.
Robynne Wagner Nowacki and her sons are going through what most of us do not even want to imagine. Middle son Nic, a senior at Edwardsburg High School, is doing a great of helping. The boy’s stepfather, Johnny “Mudd” Nowicki does his best to keep spirits up.
Help for the benefit is coming from many sources: one of Nic’s teachers from Edwardsburg, an old friend Susan hadn’t heard from in 20 years, a woman who works at Lakeland Hospital heard of the family’s plight and offered her help, and of course the Internet.
The family’s story can be found at www.caringbridge.org/visit/robynneandherboys as well. Families who wish to use the site can create their own Web site in minutes at no charge.