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Opinions and Decisions

Thursday, July 28, 2005 6:00 PM CDT

Things are deteriorating rapidly. It's frightening and heartbreaking. We got a wheelchair for Dave today. He's unable to walk even a short distance, and he's a big man, 6'2", so I can't help very much. He had another fall last night. He decided to get up and go to the bathroom without me and fell. No injuries, luckily he missed all the furniture and the bedroom is carpeted, but it scared me good. I said, "WHAT were you doing??" He said, "Well, I was trying to win you some money." I said, "Money??" He said, "Yeah, I was entering the stupidity contest." So as you can see, our Dave is still there. He's amazing. So strong, such a fighter. His body is betraying him at every corner, and he just smiles, hugs and tries harder. He finds humor in the tough spots, and although they call me the caregiver, it's the other way around. He cares for everyone around him. He reaches out, comforts, reassures, hugs, smiles, and makes us laugh.

We went down to the summer football camp today. As most of you know, Dave is a football coach. Has done football coaching at Walla Walla High School for 13 years. Our son, Zach, who's 13, today his team won the championship, his watermelon relay team won, and Zach was awarded best 8th grade player of the camp. It was beautiful. The kids at camp gave Dave a huge cheer. It was a shining moment for Dave and Zach, father and son on the football field together, beaming with pride in themselves and each other. Dave has had such an impact on so many young men through his teaching on and off the field. His patience, love, integrity and gentle strength show in everything he does.

Dave's enjoying visitors. He has never had a bigger smile than when he saw Erik, that was good for the soul, although I missed my dance partner. Denise and crew came, too. Denise and I wallpapered while Bob and Erik re-did the bathroom floor. We've also been lucky enough to see Bonnie and Denny, Dave says he needs his bite monitor back, Den! Aunt Nita, Uncle Ken and Grandma were here, too. Dave really brightens up when someone comes to see him. Jeffrey came and brought his keyboard, what a healing night for Dave...and for me, thanks Lisa, Teri and my ever-faithful, Deb. He was glad to see Cindy today, and Amy, you are an absolute gem!

Meanwhile, we're still waiting to hear from UW, UCSF, and Duke. Got a call from UCSF that we missed, called back, he'll call tomorrow. ***Update: he called back today. He's recommending VP-16 and Tarceva. He's also not completely sure that the CPT-11/Avastin has truly failed, because the regimen was screwed up with the hospital stay and low blood counts.

We'll have to make a decision soon, and it may be our last shot. Dave's not strong enough to withstand much more on the treatment front. It's scary how quickly things are declining. Not much more than two weeks ago, Dave was playing football with Zach and Kenny in the yard. Now he struggles to feed himself.

Dr. Prados & Dr. Spence have given these options in the past: hydroxyurea, rapamycin, gleevec (Dave's tumor tested non-responsive to gleevec), accutane, VP-16, celebrex, or interferon. I wrote to Dr. Stark-Vance and asked if she had any experience with any of these or combos of these and if she would recommend one course of action over another. The only thing she said was that she'd recommend a combo rather than a single agent, and that she knows Duke uses a combo of hydroxyurea and gleevec, but that she hadn't seen any success with that yet.

So, thank you for all the uplifting, caring notes. I appreciate you all. I haven't time right now to reply to everyone individually, but please, know we read the notes and are warmed by them.

It means a lot to Dave when people sign the guestbook. We have a little ritual, before bed, we call up the website, (well, actually now I have to write them down and bring to Dave), but we read the entries from people that day, and then we pray for everyone who wrote in that day. It is a magical, peaceful, healing time of day for us. I am continually amazed. Even with all that's going on, Dave wants to get to the guestbook, not to see who's written to him, but to see who he can pray for today. He's been that way from the very first. In January of 1997, he woke up from surgery, looked into my eyes and said, "Not today." Which is our little private joke...when we were dating, he used to ask me to marry him every day. Not willing to close any options, I'd say, "Not today!" So it was his way of telling me that he was still Dave. Anyway, after he said, "Not today," a while later, he asked, "Well, what did they find in there?" I told him it was cancer. He thought for a minute and said, "There are going to be some kids at the high school who will have a hard time with that, we need to pray for them." That's the kind of heart he has. Later he said, "Hospitals are for sick people. Get me out of here." That's the kind of spirit that's been our biggest ally in this fight.

God, please, please, we need him so much. Please, please heal him.

PS. Please pray for a woman we know from the list, she has two girls, and her husband, who suffered from a brain tumor, ended his own life. They are devastated.

Also, for one of my little toddlers, Nolan, and his family. He has been diagnosed with leukemia and his family is staying at Ronald McDonald house, far from home, enduring chemotherapy treatments for this little one who isn't even two years old yet. His prognosis is very good, 85 percent cure rate from what I've been told, but they have a long road of difficult treatments ahead of them.

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