Thursday, April 28, 2005

Pictures Posted

Thursday, April 28, 2005 2:50 PM CDT

http://pg.photos.yahoo.com/ph/shibelle007/my_photos

The above link will take you to my photos at yahoo. 192 new pictures to look at!

The albums:

Choir Trip Pioneer: Kenny's 8th grade choir trip
Amy's Birthday/Puppies: Amy Ullmann's 9th birthday, pictures in Kelso, pictures of Sophie's puppies, and a few baseball pictures.
Spud's Birthday: We celebrated at MomJudy & DadBob's house. Pictures of Spud, Caleb, Annalee, and of course, the ultimately photogenic combo of Missy and Zach.
Music: Missy Peterson, Shane & Tracy Longmire, Jeffrey Townsend, & Skip Pritchard in their healing ministry.

I hope you have fun seeing them.

For chemo updates, see journal history. Dave is at work today! YAHOO!

Wednesday, April 27, 2005

Music

Wednesday, April 27, 2005 11:11 PM CDT

Okay.
Answered prayer #3: No side effects. Dave is feeling good. A bit tired, but pretty good.

No, right now he's feeling fabulous. His face is lit like a Christmas tree. I haven't seen him glow like this in quite a while.

It's music. Music and good friends. Missy Peterson had the idea...let's get together and sing. So she came, brought Shane & Tracy Longmire, Jeffery Townsend, & Skip Pritchard. It was wonderful. Healing. Powerful.

Dave is aglow. Thank you friends. As Skip prayed, "We know that whenever two or more are gathered, You are there." How blessed we are.

How blessed we are.

Infusion Part II

Wednesday, April 27, 2005 4:20 PM CDT

2 pm (see journal history for previous entries today)

CPT-11 is in. Dave's feeling fine, a little wobbly, heart rate still low, but overall okay.

Alex came to see us. She always makes me laugh. Good thing she has such an understanding boss!

Now we rest. And pray. And hope. And love. And believe.

Thanks for being with us!

PS. Terri...how's this for COUGAR???

Infusion Time

Wednesday, April 27, 2005 1:11 PM CDT

Anti-nausea meds in, avastin in, cpt-11 soon to come. Dave's doing well. His heart rate is only 40, tho, so they're watching that. Doc thinks it's withdrawal from the thalidomide. Dave's dad came by to sit with Dave while I run home to get the music. Need to listen to Matthew West "Happy" while at the Cancer Center!

Answered prayer #1 (well, #1001 really, but for today..) The insurance will pay!!! Hooray...and if you know anyone who works for Premera Blue Cross, hug them!

Answered prayer #2: The nurse, Katie, was able to easily find a vein. We'll be doing a port soon.

Thanks for everything, ya'll. KOKO!
Love, Shelley

Tuesday, April 26, 2005

Plan in Place

Tuesday, April 26, 2005 6:45 PM CDT

Met with Dr. Sacks. After much research and even more prayer the CPT-11 & Avastin will begin tomorrow. It's a 4-5 hour infusion process.

Please, please pray.

Pray that this treatment will work, that it will halt the growth of the tumor, destroy the cancerous cells, and spare the healthy cells. Pray that Dave will feel good and remain strong and that his blood counts remain steady. This combo should have fairly minimal side effects. Pray that our insurance will agree to cover the $4000 per week it will cost. While you're at it, we could also use a good vein :-) !

Thank you for your diligence, your dedication, your love. We see the love of our Savior shining in your faces, working through your hands and your prayers. Our God is an amazing God. "Even when my hands are heavy, I will lift them up to You!" We lift our hands, our voices and sing His praise. His grace is sufficient, He is our haven, our hiding place. Tonight we rest, tonight we pray. Tomorrow we fight.



A Cherokee elder was teaching his grandchildren about life.

He said to them, "A fight is going on inside me...it is a terrible fight and it is between two wolves."

"One wolf represents fear, anger, envy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego."

"The other stands for joy, peace, love, hope, sharing, serenity, humility, kindness, benevolence, friendship, empathy, generosity, truth, compassion, and faith."

"This same fight is going on inside you, and inside every other person, too."

The children thought about it for a minute, and then one child asked "Which
wolf will win, grandfather?"

The old Cherokee simply replied.... "The one you feed."

Even When

Tuesday, April 26, 2005 1:57 PM CDT

Artist: Seven Places
Album: Hear Us Say Jesus
Song: Even When

This week, I prayed, one time
My phone, it rang, I put You on the other line
And now my thoughts they drift around
My knees remain unacquainted with the ground
Unless my faith is put to the test and I am forced to bow
Although I'm in this flesh it doesn't mean You shouldn't have the best
from me, from me

[Chorus:]
Even when my eyes are dry
even when my soul is tired
even when my hands are heavy, I will lift them up to You
It's not about how I feel, oh Lord I am here for You
I exist for you

I close my eyes but all I see
Is a background of black, bouncy squiggly lines
And this week's mistakes coming back to mind but
I will lift my voice and make a joyful sound
Forget about me, I only get me down
Although I cannot see it doesn't mean I shouldn't sing to You, to You

[Chorus]

You've given me Your life and have held mine together yet I find
Excuses to slouch in my pew
But when glory divine
Is sitting in my very presence, the least that I can do
Is give my all to You, give my all to You

[Chorus]

Saturday, April 23, 2005

Decisions to Make

Saturday, April 23, 2005 4:14 PM CDT

Babe Ruth Try Outs Today!

Zach was great. It was so fun to see. He listened to his mother and swung his new bat LEFT-HANDED again! Worked like a charm. He hit well, and smashed it a few times. Fielding looked great as well. Very fun for Dave to be there.

Kenny had track this morning. Working on the long jump. Got into the car and said, "Whew, I'm outta shape." Funny kid! We were tired, he was in a choir competition in Pasco yesterday, and it was a long night. But the choir did very well and sounded beautiful.

Heard from Duke this morning. Early. Talked to Dr. Friedman early today. He was in early on a Saturday, he's obviously very dedicated and I know he sees half of the brain tumor cases in the country cross his desk. But, man, it was a disappointing phone call. I had talked to Dr F. in Feb after Dave's gamma knife. Said, "We can't help until he shows progression." Saw Dr. Prados, he got Dave on tamoxifen/thalidomide.....good news for a while, then double vision and bad MRI. Sent all the records to Duke. Dr. F. called 2 weeks ago and said, send the scans, the slides, etc. We did again, and waited, waited. Got the call at 6 am today. He said, "Well, how's he been doing since January?" I'm not too awake, so I didn't say, "Well, I told you all that 2 weeks ago..." I just went thru it again. Then he said that he didn't have any clinical trials Dave was eligible for, that it was too soon to say on the CPT-11/Avastin, and that he couldn't offer us anything different or more than Dr. Prados, maybe he'd recommend hydroxyurea/gleevec. End of conversation. Turns out Dave's tumor tested to be non-responsive to gleevec. (Thank you, Dr. Sacks for running that test.) So I guess we're back at square one. Maybe square negative one, because the tumor has continued to wreak its havoc in those waiting weeks, and the double vision is daily now, even with upping the dex. And some days the walking is not so steady. AAAAAAAHHHHHHH!

Dr. Prados mentioned several options: VP-16, Iressa, Tarceva, beta interferon, rapamycin.
The $64,000 question:
HOW DO WE DECIDE WHICH ONE AND IN WHICH COMBINATION???
CPT-11/Avastin is another option, as is PCV. And I talked to Dr. Merchant about a mushroom that has been in use in Japan with good results. Dr. Merchant is beginning research in the US. We may be able to add this to any other combo we use. I don't know what to do, and we've already waited too long.


Right now we're leaning toward the CPT-11/Avastin combo. It's new in use, but has shown some amazing results. 21 patients, 10 months...only one showed tumor growth, 8 had stable disease, the rest had improvement. It is not labeled for use for brain tumors, and will likely cost us abour $4000 per weekly treatment. Next step is to find out if insurance will cover it.


We are on our knees daily, praying for guidance and discernment. Got a call in to Dr. Prados to see what he thinks about CPT-11/Avastin.

KOKO. On a sad note, a few prayer requests. Kate's classroom teacher and PE teacher are married and their child was stillborn yesterday. We are broken-hearted for this little family. Please pray for comfort in their loss.

Also, Mark Daltoso, who was diagnosed with a brain tumor 5 years ago and waged a mighty battle against his tumor, has laid down his sword. He died on April 18, 2005. He was a much beloved husband and father to 4 children. His mother has been by his side throughout the journey, and has been a source of invaluable support to us, as well. Please pray for Mark's family, especially my dear friend, his mother, Marguerite.

Many mother's hearts are hurting.

Wednesday, April 20, 2005

This Is Your Life

Wednesday, April 20, 2005 11:48 AM CDT

When I hear this song, I think of Dave. And when I hear that question, "are you who you want to be?" I know that Dave can say YES!

This Is Your Life by Switchfoot

Yesterday is a wrinkle on your forehead
Yesterday is a promise that you've broken
Don't close your eyes, don't close your eyes
This is your life and today is all you've got now
Yeah, and today is all you'll ever have
Don't close your eyes
Don't close your eyes

This is your life, are you who you want to be
This is your life, are you who you want to be
This is your life, is it everything you dreamed that it would be
When the world was younger and you had everything to lose

Yesterday is a kid in the corner
Yesterday is dead and over

This is your life, are you who you want to be
Yhis is your life, are you who you want to be
This is your life, is it everything you dreamed that it would be
When the world was younger and you had everything to lose

Don't close your eyes
Don't close your eyes
Don't close your eyes
Don't close your eyes

This is your life are you who you want to be
This is your life are you who you want to be

This is your life, are you who you want to be
This is your life, are you who you want to be
This is your life, is it everything you dreamed it would be
When the world was younger and you had everything to lose

And you had everything to lose

Tuesday, April 12, 2005

Disney Pics

Tuesday, April 12, 2005 7:28 PM CDT

New Disney pictures on the yahoo site. Go visit the address above, and click on the DISNEY HAROLDSON-STYLE album. Way cool pics, thanks Evy & Erik. Trying to find a way to upload the DVD that Mindy made. It has pics, video and music....wonderful.

Thursday, April 07, 2005

Scan Results

Thursday, April 7, 2005 2:04 PM CDT

We met with Dr. Sacks today and looked at the scans. The news is not good. The tumor is growing, and pretty significantly. It has crossed the corpus callosum and there are new tumor sites now in the right hemisphere.

This precludes doing any more surgery. The will not do surgery if both hemispheres are involved.

No more gamma knife, either.

We have tried almost all chemos that have any kind of track record at all. This leaves experimental treatments/clinical trials.

Scans went out to Duke today.

Please pray, we are running out of options.

It's miracle time.