Saturday, June 12, 2004

Thoughts of Donna.... 

...haven't mentioned on this blog (did on my previous one) that I've had the good fortune to meet the webmaster of Fibrohugs.com, Ken Euteneier (who has fibromyalgia himself) and his wife Donna. There was a fibromyalgia conference in Colorado Springs in 2002, and I got to spend a fair amount of time talking to them about the ups and downs of running a successful website and find out a bit about their hometown of Regina, Saskatchewan, Canada. It was inspiring to meet people so dedicated to raising awareness and providing crucial support for those with chronic illness. And so funny! We laughed late into the night.

Last year, Ken began a site for people with cancer, never dreaming that just a few months later, Donna would be diagnosed with multiple myeloma. They both faced this challenge with great courage, bolstered by prayers from literally all over the world. The hosptial treating Donna was 150 miles from their home, which meant long commutes for Ken, who was trying to balance illness with childcare and running a glass-etching business out of his home. Donna had to be quarantined frequently during her treatment, so there were times Ken couldn't see her when he wanted to.

A fibromyalgia conference had been planned in August 2003 near Regina but had to be cancelled after Donna's diagnosis. Several of us who had made reservations decided to get together anyway. We were from various parts of the US and Canada. We spent some time at a nearby spa and socialized to our heart's content. One of the evenings we were in Regina, we went out to dinner with Ken and his boy Mike. Ken was all smiles, but I could sense the heavy heart and exhaustion behind it. After we ate, we decided to surprise Donna, who was at home but under quarantine, and at least wave to her from the yard. She appeared at the door, tears of happiness in her eyes, looking a bit tired but strong. She came out onto the front porch for awhile so we could talk with her. I got to give her a hug.

As the months passed, Donna passed through the first round of chemo with flying colors. Things were looking up. She had had her own stem cells harvested before the chemo and was to undergo a procedure to return those cells to her. Then they got the awful news that the cancer had returned much sooner than expected. More aggressive measures were called for, and the hazards to her survival became greater. Recently, she was given the option to discontinue treatment, which would mean certain death, or to undergo a risky stem cell transplant from her brother, who was a perfect match. She was told she might not survive the surgery. She decided it would be a worthwhile gamble. The surgery itself was a success, and doctors were calling it a miracle. But something unexpected happened. Donna began to show signs of a stroke or something similar. Then last week, her heart stopped. Doctors were able to restart it, but she slipped into a coma. There was a chance that one of her medications was the culprit, so they discontinued it with the hope that when it left her system, she would revive. So far, she has not awakened.

Now Ken is facing one of the most difficult decisions of his life. Donna had requested some time ago that should she ever be in a vegetative state that she not be kept alive by machines. They are waiting until Monday to determine if she is likely to recover from the coma. If she is not, the family may opt to have the life support shut off. Ken continues to be amazing through all this. He loves his wife so much, and it must break his heart to see her suffer. But his faith remains, and it will give him the strength to do whatever he must do. Both of them have been a great inspiration to me.

I wish I wasn't so far away. I feel helpless. The very least I can do is tell others that there are good people in the world and that we should take whatever opportunity we have to appreciate them.

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