Thursday, December 30, 2004

Desperation

Thursday, December 30, 2004 10:47 PM CST

Today is a sad day. We're taking down the Christmas tree, and that's always a little sad. It's the time of year we think of Kyle more than usual, too. And today's news didn't help.

Dave's MRI was not good. The tiny spots that were treated with gamma knife have grown hugely since September 30. There is a lot of swelling from the growth and there is mass effect, which means his brain is being squished to the side because of tumor growth. It's pretty obvious the BCNU is not working with growth this rampant.

So we called UW. The doc there recommended carboplatin. We called Duke as well, but Dr. Friedman isn't in the office today. So we went ahead with the carboplatin. It's essential to get something going right away. And if Duke has something else to offer, the carboplatin shouldn't interfere. Worst case he might have to wait 3 weeks to start a different treatment.

We need a miracle, folks. Because Dave's tumor bed (the site where the original tumor was removed) opens to a ventricle, he is not eligible for many of the promising new treatments that are in clinical trials right now. We'll see what Duke says, but it looks like it's a matter of trying different chemos and combos of chemos and antiangiogensis agents (which inhibit blood vessel growth...tumors grow huge numbers of blood vessels to feed themselves).

So please pray. If you've been praying, thank you and please keep going. Pray every day. One trick I learned is put a little dot on your watch...when you see it it will remind you to pray for Dave. If you have a LiveStrong or brain tumor awareness wrist band...wear it every day and when you see it, remember to pray. Put Dave on any prayer chain you know about.

I guess I sound a little desperate. I feel a little desperate.

Lots of love to all of you, Shelley

Wednesday, December 29, 2004

Birthday Boy

Wednesday, December 29, 2004 11:58 AM CST

Yesterday, Dave had his birthday....and an MRI. With the MRI tech from hell he says. 5 sticks before they got it. Pray this was because she is lousy and not because Dave's veins are giving out.

We should get results tomorrow. If blood counts are good and tumor is stable or (please, God) shrinking, then he'll have his next BCNU infusion tomorrow. If blood counts are poor, but MRI is good, we wait for his counts to come up. If counts are okay, but MRI is bad, then we need a plan C...or is it D...just how far down the dern alphabet are we, anyway?? I know we're NOT to Z.

Hope to post birthday pics soon. We celebrated with Mindy, whose birthday is today. Happy Birthday, Mindy!

Friday, December 24, 2004

Eight Years

Friday, December 24, 2004 1:53 PM CST

8 years ago yesterday, I didn't want Dave and his brother to drive to Portland (4 hour trip each way) in the snow just to pick up a table. I wanted him to stay home with me. Since I was so witchy, they decided to leave really, really early, the plan being to get back early, so I'd have less to complain about. So I was barely out of bed when I got the call from the state patrol...."your husband has been taken to the hospital...." Took me an HOUR to find the hospital, finallly they said he'd be fine, come get him. His brother just needed a couple of stitches where the coffee thermos had hit him. Whew. My dad drove me to the hospital a few hours away from home.

When I got there, Dave said, "Something's growing in my head." I thought he'd lost his marbles. I asked the doc, "Is he okay?" The doc popped the CT film over the lights and said, "Not really." The tumor, visible to my untrained eye, was huge, the size of a tennis ball, and pushing Dave's brain to the side. "We noticed his eyes were unequally dilated, so we were ruling out a head injury, and found this." I shook my head...."That has to come out!" I said. "You're right about that the doctor said. I looked at my incredible, amazing husband, young, healthy, strong. It was inconceivable. Unacceptable.

Thus began our BT journey. Dilantin, decadron, surgery, seizures, radiation, dismal prognosis. The whole package. Thankfully that package also included friends, family, prayer, delivered meals, fundraisers, concerts, hugs, hand-holding and six and a half years of perfectly clean scans.

We're in the midst of battle again. We baked a cake yesterday and Dave celebrated his 8th birthday. He celebrates his 42nd birthday on the 28th, and has an MRI that day. We're hoping for another miracle.

We've been given 8 wonderful years. Kate was just a baby when Dave was diagnosed. Now she's 8 1/2 years old, in third grade, and every bit the Daddy's girl she was meant to be. Our sons are growing into fine young men, every bit the image of their wonderful father, following his inspirational example, learning from his continual presence in their lives.

We have been blessed on this rollercoaster ride. There are so many people to thank, so many who have been our feet when we couldn't walk, our voices when we couldn't pray. You're all amazing.

Happy Birthday, Dave!

Thursday, December 02, 2004

Get a Wrist Band!

Thursday, December 2, 2004 4:05 PM CST

There are brain tumor awareness wristbands available now. They are like the Lance Armstrong cancer awareness wristbands, but they are soft gray in color...representing the "gray matter" of the brain. They say "Sharing Hope" and are available on the American Brain Tumor Association website: http://www.abta.org