Last week while in Longview to shoot the IHS Knowledge Bowl team at a meet (for next week's feature page) I had the opportunity to spend some time with the Jones family to make some pictures to go with the lead story on the front page this week.
I've known Brad and Sarah some over the years and his parents Rick and Cheri live a couple houses down from us in Ilwaco, so I've been aware of Conner's struggles with CF and prune belly syndrome basically his whole life. The family now lives in Longview and though it truly saddens me to say it, it looks like his fight may be coming to an end. They have apparently exhausted all medical options at this point and the medications aren't having the same effect they once did. Knowing all this I was really torn about going to get pictures. I mean, what is appropriate?
While Conner was administering multiple inhalers to himself I got this picture, which I liked the best, as he looks contemplative and brave, IMO. He also looks like a boy older than 6, which I think has some truth to it too. I had others where he was actively using his inhalers but they felt too invasive, so I chose against them.
I liked this one a lot too, as it was by far the best connection picture with him and his family. Once again I was mindful with what I was showing as he was using another type of inhaler that projects a steamy mist — very clinical looking — and the way he was sitting his tummy was uncovered and the outward effects of his prune belly syndrome were obvious. Once again I had to decide what was relevant, what was appropriate.
What was perhaps most notable about my time there that night was how welcoming and kind they all were. I mean, they certainly don't have to let people like me come in and take a bunch of pictures, but I never felt uncomfortable once inside, and I thank them for that. You can follow the family and Conner's journey on his mom's blog devoted to the story HERE, it's a really honest take on being a parent.
Here's how I put together the front page this week, I think the package came together really well, and Amanda's story is really good.
I have to add that I have particularly resolute feelings on this subject
I HATE CYSTIC FIBROSIS
It is so unfair, but I guess most severe illnesses like this are, but I hate it. Eight years ago I lost a very good friend named Brandy Stroeder to CF, a girl who gained regional, if not national, fame for her fight against the Oregon state health care plan that would not cover the multiple transplants she needed to survive. It was one of the first stories I shot after getting hired by the News-Register in McMinnville in 2000, and I continued to shoot the story essentially the whole two years I worked there. She died in April 2002 a couple weeks before I left the paper and her funeral was the last assignment I shot for the N-R. It was heartbreaking to be covering it as a news story while developing a strong friendship with her and her family, only to have it end with her at the top of the transplant list.
I've never put together a really nice gallery of the final edit of the story (mostly because I never made really high quality scans of the best stuff which was shot all on film), but I did put together a small portfolio of it on Photo.net several years back. It's actually still there, but since the Web site was redesigned a couple years ago it runs backwards now for some reason, so if you want to check it out you can HERE, but to flip through it in linear fashion you need to use the arrow key on the LEFT side of each picture. In recent years I have considered seeing if the Portland chapter of the CF Foundation would be interested in maybe doing a gallery show of the pix, but I have fallen out of contact with Karen Case, Brandy's mom, and I wouldn't want to do it without her blessing. But who knows.