Mycosis Fungoides

Unless you know someone with this condition, you're probably thinking, "What???"

Yesterday we learned that our son, Caleb (who is 10), has a rare cancer called "mycosis fungoides". He's had skin irritation, rash, and occasional infections for 2-3 years, but only now has a doctor figured out what it is. He will begin ultraviolet light treatments 3x-a-week starting on July 9 and they hope to have it in "remission" before school starts.

Here are some praises to go with this prayer request:
First, the median time from first skin symptoms until diagnosis is six years. While we could be frustrated that our pediatricians over the last 2-3 years never figured out what this was, the dermatologist we're working with now, Dr. Kang, told us that most pediatricians would never see a case of this in children and it would be normal to just treat the symptoms. So, we're thankful that this was identified in less than half the typical time.

How did they find it? Well, that's another praise. We were blessed to get referred to Dr. Kang, a dermatologist with Kaiser Permanente, who also participates one day a week with a group of doctors at Oregon Health Sciences University. After Dr. Kang did a biopsy from a patch on Caleb's back and then wasn't sure about the test results, he set us up to bring Caleb to OHSU to a weekly consultation/study group in which he participates. Caleb (and Lani) went there last Wednesday at 7:00 a.m. and had about 40 doctors and specialists examine him in groups of about four at a time. Out of that collaboration came the diagnosis. This is not only a rare cancer, but is exceedingly rare in children. So again, we're thankful that this has now been identified and treatment can begin.

Dr. Kang warned us to be careful about reading about mycosis fungoides on the web because he knew that it sounds very dire out there. He is quite hopeful that with this early detection and with Caleb's age, that this can be quickly put in remission. Still, there is a lot that we don't know about it yet. We've written out a bunch of questions to ask the doctors when we do our "orientation" appointment week after next.

Here are some sites that provide information about mycosis fungoides. Be warned that this sounds really bad. We don't know yet what all this means in Caleb's case.
rarediseases.about.com/od/rarediseases1/a/101004.htm
emedicine.com/med/topic1541.htm
answers.com/topic/mycosis-fungoides?cat+health
webbmd.com (search results for "mycosis fungoides")
clfoundation.org

Please lift us all up in your prayers. I feel like we just started a journey down a long and unknown road. I know God will be with us all the way, but I just don't know where we're going! (Isn't that true about all of life!)

Bike Riding Family

We live really near this awesome trail, the "Springwater Trail Corridor", but we've hardly ridden our bikes on it since moving here last August. I love to take Molly for runs on it, but we just hadn't biked. . . until now.

This last week, now that we're all on Summer break, we started getting bikes and equipment all ready for our family to ride. I picked up a pair of mountain bikes on Craigslist for a great price and then fixed flat tires on two bikes this week, got a super-soft seat for Lani, a new helmet for Micah, and lubed and adjusted all the bikes to fit our current sizes. I'm still watching for a different bike for Hannah because one of the Schwinns that we've had for awhile is a little under-sized and also in need of lots of adjusting to really run well.

Last night and then again tonight, we all took a ride on the trail. So far, it's been fun and a good family thing. We went east last night and west tonight on the trail and got to see a little more of it in each direction than any of us had seen on walks or runs. We've seen scores of rabbits (and mosquitos!), several deer, and lots of beautiful scenery. I'll have to take some pictures and post them in the near future.

A new first for me

Last night I sang two Beethoven works with the Portland Symphonic Choir (along with the Portland Chamber Orchestra). We did his "Choral Fantasy" and then the infamous "Symphony No. 9" It's almost embarrassing to admit as a chorister that I had never done the 9th Symphony before (seems like most of my fellow choir members had done it three or four times). Anyway, now I can say that I've had that experience! It went quite well with the audience giving us a long, rousing, standing ovation. And when the maestro extended his hand toward the choir for our acknowledgement, it was like a huge surge of cheers and applause, so we must have done well (we'll have to see what the critics write in the local papers -- probably coming out tomorrow). It was difficult to sing because of the high range and loud dynamics, but it sure was exciting. And now it won't be long until the next time I sing it because our choir is scheduled to do it with the Bend Chamber Orchestra in Bend on August 25.

You can always check out the Portland Symphonic Choir at www.pschoir.org

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Only four more days with students this school year (and then two work days). Summer is nearly here!!!