Thursday, November 29, 2007

I don’t know what I did, in this or any life, to earn such an amazing community of support. The Boy and I have been going back and forth between Seattle and Portland so much, I had begun to loose my sense of which end of the journey was home, and which end the visit. Things like this make very clear where both my home and heart are

Saturday, November 17, 2007

Happy Thanksgiving

It is a blessing to be
It is a blessing to be here
It is a blessing to be here now
It is a blessing to be here now together

There is a beautiful African man working here at Seattle Children’s who tells me that “Leo” (he pronounces it “lay-o”) is also a name where he comes from, in his language it means “today” or “this day”. Here in the now. So significant in so many ways.

And so, in this season of thanks, we are grateful, Leo and I, for this day; each day. And we are grateful to be here together, cradled in a circle of love that is wider and deeper than we might ever have known if not for this crisis.

Leo and I will be staying in Seattle at least through the end of the month, and just in time there is ‘room at the Inn’ (Ronald McDonald House) Although I find it wildly ironic that he and I would be staying at, well, McDonald’s (or any place associated with it) I am so thankful to have this lovely room with two beds and big windows looking out into the embrace of trees and sky. With luck, Leo will be able to make the shift here over the weekend, in the mean time it is a welcome retreat for me in between proceedures and hanging with Leo.

So, we are here now, and we are not alone, and we are so grateful for all of you.

Kyr & Leo

Monday, November 12, 2007

My Son, the Super Hero!

I have long thought of my son, Leo, as “The Boy Who Lived”.
Literally from the time he was born (breach, with the cord around his neck, and no medical intervention) he has been dodging bullets and surviving close shaves. James Bond has nothing on my boy!

Just a few weeks after he was born, Leo was diagnosed with Alagille Syndrome[1], a genetic disease that effects an array of systems in the body, primarily the liver. As a result, he cannot digest fats and has trouble assimilating fat-soluble vitamins, leaving him perpetually on the precipice of malnutrition.

Despite all this, and a round of hospitalizations as an infant, his health steadily improved, and for over a decade he has led an active life that included exploring Oregon’s wilderness, rock climbing, earning a blue belt in Taekwon Do, and enthusiastically participating in Portland’s bike culture. His irrepressible charm and good health lulled all of us into the belief that he was invincible, and would never need the only known “treatment” for Alagilles: a liver transplant.

This year, however, his health began deteriorating; in a matter of months he went from cycling the Springwater Corridor with other members of SHIFT, to being unable to walk to the bathroom unaided. Leo’s naturopaths were determined to find the best possible care for him, and after researching all the options, referred him to Seattle Children’s Hospital. So it was that Leo and I began making regular trips between Portland and Seattle this Spring, and initially the specialists in Seattle were optimistic about the possibility of treating Leo without a transplant.

The quality of care at Seattle Children’s is vastly superior to anything available in Oregon, and Leo and I really enjoy riding the train up and back, and our bikes around Seattle. Our adventures, as well as the state of the art care, were always more than worth the trip. The only problem was the cost of treatment, by summer we had wracked up several thousand dollars in medical expenses. The only thing that saved us was the hospital’s willingness to accept manageable payment. Meanwhile, the disease was progressing at an agressive rate. October found him severely weakened and, as we would later learn, severally malnourished. He had no appetite, and his body could not assimilate what little we was able to take in. When we arrived for a November 14th appointment in Seattle Leo was so ill he needed to be immediately admitted to the hospital, with all indications pointing to liver failure. He and I have been here at the hospital ever since.

So now we are facing the possibility of needing to pay for a liver transplant, as well as the cost of his current hospitalization and previous treatments.

Leo is beloved by all who encounter him, and has an amazing community working on his behalf: friends and co-workers have worked diligently to find insurance options, and are organizing an array of innovative fundraising events; Seattle Children’s Hospital is working tirelessly to get the Oregon Health Plan to cover his care, and in the mean time are providing state-of-the-art care with little regard for our ability to pay. The one thing they cant do is put him on the transplant list, not until we either come up with insurance to cover the surgery, or come up with about $300,000 dollars. That is apparently the value of a human life, in this instance anyway, and those who have it get to live.

Will our hero able to beat the odds yet again, stay tuned . . .

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