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

Tuesday, November 30, 2004

Start of School

Monday, August 30, 2004 11:05 AM CDT

Hello friends and family,
Thank you so much for your continued prayers. School has started and it's been quite a whirlwind at our house. Kenny is in 8th grade, Zach is in 7th and Kate is in 3rd. They are all really enjoying school and their teachers. Kenny & Kate are so happy to be back. Zach is a bit more reluctant. He has a killer schedule: Explorer Language Arts, Explorer Literature, Explorer Science, Algebra, Social Studies, Band, PE and an exploratory class called Money Matters. He's gonna have a ton of homework! And Algebra goes on his high school transcript...so that's a little nerve-wracking. The boys are both doing football, so we don't even see them until 5:15 pm. That's been hard to adjust to...for mom anyway. Kate starts jazz and ballet in 2 weeks.

Dave has been at work full time, and at football practice every day. He's been really tired the past 4 days, and having a lot more headaches. Pray for pain relief and he also asks for prayers that he doesn't have to go back on the steroids. He hates that stuff.

We're still waiting to hear from UW, and getting frustrated on that end. I'll make more calls today.

WaHi had the Blue vs. White scrimmage Saturday and we all went and had a lot of fun. It's great to be at football again! WaHi plays this weekend in the Qwest Seahawks stadium in the Emerald City Kickoff. We'll be playing a team from Olympia. Should be a fun weekend for all.

Thanks again for all your support and prayers. We read the guestbook every night before bed, and are so grateful to each of you!

Love, Shelley

Sick, sick, and more sick

Tuesday, November 30, 2004 2:16 AM CST

Dave is still doing well. His labs were today and they are still good. His pulmonary function test was last week, no results yet.

He's pretty tired, and still has that nagging cough and a bit of a sore throat.

Now....the rest of us, well, that's another story. Kenny broke his perfect attendance record of 6 years and was sick the whole week of Thanksgiving and missed school. He was soooo mad. I stayed home with him and got it, too. No strep, though, the doc says it's adeno-virus. Kate came down with it middle of the night, well, actually Sunday morning. I was down for 5 days solid, felt horrible for another 3 and am still coughing. Kenny was the same, so I expect Kate to be down til Thursday or Friday. She has it in her eye, too. Ick. Should have known to up the vitamin regimen when I said,
"Gee, it's been ages since the kids were sick!"

Zach went to Seattle with the Dammarell family to see Drew Bledsoe slaughter the Seahawks. He also got to go swimming, horseback riding, stay in a suite, eat room service and apparently avoid all germs. After the fall he's had, I'd say nobody deserves it more! He had a great time. Thanks Linda, Tom and Jacob.

The NINE fairy hats are all finished for the recital, (100 glue sticks later--no, I'm not kidding)...now just the santa hat and skirt...and only one of those! Going to bed!

Love you all.

Sunday, November 21, 2004

Not Sick

Sunday, November 21, 2004 2:13 AM CST

Saturday night, Dave's not sick. He's very, very tired, but no nausea or anything. We rested today.


Thank you, thank you for all the prayers.

Friday, November 19, 2004

BCNU

Friday, November 19, 2004 4:09 PM CST

Well.....

the BCNU is in! They did everything right this time, including protecting it from the light. And Dave's still not sick. I guess this is good.

He went to Kenny's basketball game right after chemo was done (Thanks Brother Bob for sitting with him through the infusion). Then he came home and ate a Big Mac and some of Janet's fabulous apple pie. Graded some papers and eventually went to bed. He's at work today.

I'm sure that he's Clark Kent's twin. Or at least his cousin.

Zach is off crutches...limping quite a bit, but we don't think the toe is broken. Bruised some, but not too bad. The nail is broken at the base, so that's the ouchiest part. Zach said his goal is to not get injured again this year. He said this, then promptly walked into the wall at the top of our stairs and proceeded to stumble down the stairs. How is it that this kid can pitch a baseball into the mitt every single time and catch a grape in his mouth from 20 feet away while diving across the bed, but he can't walk straight??

KOKO! Love you all, Shelley

Tuesday, November 16, 2004

Oh Boy...

Tuesday, November 16, 2004 5:33 PM CST

I tell ya what. God's got some weird sense of humor. Got a call from PiHi today. Two of them. From the nurse.

#1 Zach hurt his foot and is on crutches. We'll probably go to the doc when he gets his arm checked next and have it x-rayed to see if he broke his toe.

#2 Kenny had two odd episodes of shaking today at school and they're wondering if they are seizures. About 30% of kids with autism begin having seizures when they hit puberty.

My heel is better. I can wear shoes and walk...although I do kind of lurch like Frankenstein.

Dave is coughing so much he's puking.

So far Kate is safe.

As the hound on Aristocats says, "Kreiminitly!"

Sunday, November 14, 2004

Prayer Requests

Sunday, November 14, 2004 11:47 PM CST

Dave has his next infusion on Thursday, November 18 at 1:00 pm. If you can, please pray. Pray for: protection of the chemo itself so that it gets into Dave's veins fully potent, that the chemo will attack and kill all remaining tumor cells and that Dave will tolerate the infusion and subsequent nausea well.

I hurt my foot on Friday. Thought I cracked a bone in my heel, but it's quite a bit better today. Pray I'll get well so that I can take care of everyone else!

We see the original doc for Zach's arm tomorrow and the second opinion guy next Tuesday. Please pray for Zach's arm. He's doing his exercises faithfully, and is already regaining a lot of motion, but it's far from good.

Thank you so much for the way you faithfully hold us up in prayer.

On the fun notes, Kate is preparing for her dance recital, which other than making 9 costume hats, is a lot of fun. Kenny is enjoying basketball, his coach is a gem. He has a home game on Tuesday.

Sunday, November 07, 2004

Zach's Arm

Sunday, November 7, 2004 1:10 AM CST

Dave got his blood counts on Friday. They look good. Hooray and thank you for all your prayers...they worked! Or rather, God worked!

New prayer request. Zach's arm is not healing well. They took off his cast 3 weeks early, because the bone is bowed. The doctor wants Zach to exercise his hand and see if it can be pulled back in line. Zach has lost almost all mobility in his left hand. He's quite upset because that's his catcher's glove hand. His arm looks quite crooked as well. We're going to seek a second opinion this coming week. Please pray for wisdom for the doctors and complete healing for Zach. He's devastated that the injury may affect baseball.

Denise and kids are here for a visit. Soooo much fun. And Kenny has been quite hospitable. What a rare treat! Amy and Kate are joined at the hip, I think.

I have reduced my hours at work...it's just been too much. My supervisor, Melinda, has been encouraging, supportive and helpful. I'm hoping that being home when the kids get home every day will help lend some stability. Please pray for some sense of peace for the kids, it's been pretty chaotic. Pray for us around this decision, too, please, as it will stress us financially, but with Dave working such long hours at football, it just seems the right step to take.

Wednesday, November 03, 2004

Rock Me To Sleep

Wednesday, November 3, 2004 2:57 PM CST

This song reminds me of the comfort and rest we get from our Father, if we only ask.

Rock Me To Sleep
By Tom Hunter


All I can hear are the crickets
And the whistle from some lonely freight
I've been working so hard to make everything right,
But for now, it'll just have to wait.

(CHORUS)
'Cause tonight I'd like you to rock me to sleep.
I'd like you to sing me a song.
I'm tired of trying to figure things out
And I'm tired of being so strong.

I've never been too good at asking--
I'm more apt to do it alone.
And it's strange how a lot of us think something's wrong
If we can't do it all on our own.
CHORUS

It's funny how times when you're hurtin'
Make what's so familiar seem strange.
So when you need help, it's hardest to ask
And it always takes so long to change.
CHORUS

Monday, November 01, 2004

KOKO

Monday, November 1, 2004 12:45 AM CST

Life rolls along at the Meyer house. Well, rolls may not be a bumpy enough word, but you get the idea.

Thanks to the generosity of the Pribilskys and the Wrights, we now have a wonderful new washing machine. We are so grateful....and laundry is actually fun again.

Bob's been trying to fix the hot water heater. We still leak, but we have hot water for showers, dishes and LAUNDRY! So we're blessed.

Dave is feeling pretty good. He's lost some weight and doesn't ever really feel hungry, but is trying to keep eating. His skin is really dry....his Ms. Clean wife has been pushing the washing of hands and the use of Purell at school, so he's added a hand cream to the regimen!\

Thank you for the prayers, please keep them coming. Dave has an appointment this week for labs. We hope his blood counts are holding steady. He's mostly over the virus he had, but the cough remains, and concerns me.

Conferences and football playoffs are coming...always a hard time of the year for Dave. Prayers for strength and energy and efficient TA's are needed.

Blessings to all of you who hold us up so faithfully. We are blessed beyond measure. We had a little Halloween gathering last night, and it was wonderful to be surrounded by friends. It was a happy night...pics to come.

Wednesday, October 20, 2004

UW

Friday, September 10, 2004 7:57 PM CDT

Hello all,
Finally heard from Dr. Spence at UW. Re-explained Dave's case to him. He is going to call Dr. Sacks with his recommendations. We will also be submitting Dave's scans and history to Duke for a second opinion again.

So finally things are moving.

Not much else to tell. Dave will probably be having an MRI in October. Don't know when yet.

Saturday, October 16, 2004

Test Results

Saturday, October 16, 2004 12:15 AM CDT

Dave's balance is better the last two days. He saw the doctor on Friday. The results of his bloodwork were great. No problem with his counts. His lung test was "fine" whatever that means. I'm still concerned about this cough that he can't shake. The doc doesn't think he has pneumonia.

We had a fun night last night. Dave stayed home from the game since it was in Wenatchee. Some of Z's friends came by and we played Dutch Blitz. It was a blast. Kate and her friend, Katie, did a fashion show, and we listened to the Currents on cd!

Wednesday, October 13, 2004

Lung Tests, Chemo and Blood Counts, Oh My!

Wednesday, October 13, 2004 5:24 PM CDT

Today, Dave's balance is off. He's extremely fatigued. Went to school and had to call for a sub.

He had his PFT yesterday, we should get results when we meet with Dr. Sacks on Friday. Unfortunately, Dave's been battling a virus, so he's been coughing and hacking like crazy, so I don't imagine the test will be too accurate. He'll also have labs done.

These tests will be repeated in 5 weeks, when he's scheduled to have his next infusion, to see if he's able to have it. PFT and white/red cell counts have to be okay to do the infusion.

With the BCNU, turns out it was stored and mixed correctly. We're still not sure about whether it was protected from the light after it was mixed, but we know it was not during the time (2 hours) the infusion happened. Next time, we asked the pharmacy to protect it from light and it will be cloaked in light-blocking material as it is administered.

That's about it for now.

Monday, October 11, 2004

Throwing Up Is A Good Thing

Monday, October 11, 2004 11:56 AM CDT

Well, is it good news or bad? Dave threw up yesterday. Hooray, I think. He felt okay to go to the football meeting yesterday and is at work today. So we just KOKO. Mom and Dad are here for a visit, it's been good to see them and the kids are so excited they get to sleep in the motorhome!

I'll be talking to the cancer center folks today to find out about the BCNU and how it was mixed/stored, etc.

Love you all.

Friday, October 08, 2004

Can't Catch a Break

Friday, October 8, 2004 9:21 PM CDT

I told Janet this morning that I was waiting for the other shoe to drop. Dave is still doing okay, he's feeling a little weak in the knees, and did gag once when he was coughing, but still cautiously okay.

The problems: received an email from a doc who specializes in bts. What follows is the text of an email he sent me.

"The thing to watch for is lung function.. get a referral to a pulmonary specialist for a baseline breathing test now, then repeat it frequently to catch the first signs of lung problems.
BCNU infusions are tricky if the nurses don't do it all of the time... it has to be in a glass container - not the plastic bags used for everything else, and protected from the light, and only lasts about 8 hours after they mix it unless it is refrigerated. If you notice they aren't following those rules, tell the doctor. The reason I mention this is I once talked to someone who also said he had no nausea and the bcnu wasn't working and he saw my page on bcnu (http://virtualtrials.com/bcnu2.cfm) and noted that he was getting it in a plastic bag, exposed to the light over a long period of time. He argued with the doctor who said it didn't need to be in glass, and they checked the package insert, and found it to be true. They
then tested it and found the iv bag only had a small % of the bcnu that it should have had.
Al."

Dave is getting the PFT (pulmonary function test) next week and before each new round. The BCNU was in a glass bottle, but I have no idea how long it was mixed and how long it was exposed to light, so the bad news is, the BCNU might have been compromised, and that might be the reason he has no nausea. We will call the doc on Monday and find out about the light exposure and how long it was mixed.

Big thank yous to Dale Smelcer who came and worked on Kenny's window today. Bless you, Dale, and LaDessa for offering him!

Love you all, Shelley

Praise the Lord!

Friday, October 8, 2004 10:57 AM CDT

PRAISE THE LORD! HE IS SO GOOD TO US, AND PRAYER IS SO POWERFUL!

Thank you for your prayers, they are working, Dave has been protected from any nausea. He feels fine and is getting some extra sleep today.

He is so amazing, so inspiring. I'm so thankful to have such an incredible person in my life. He's the best husband and father I have ever seen, bar none!

MAKE A JOYFUL NOISE! Whoo hoo!!!!!

Thursday, October 07, 2004

First Chemo

Thursday, October 7, 2004 8:09 PM CDT

Chemo is in!

So far, so good. It took 4.5 hours instead of 2. Some of that time was for the anti-nausea drug to drip in. Dave had no pain during the infusion, which was good, and the IV was placed easily. That's usually the case, he has good veins, but the MRI tech last week really messed up his left arm, but good.

Robin came by to pray with us before we went to the cancer center. That was a blessing. Janet prayed with me before I left work. We are so grateful for Robin and Janet who always have the right words to say to uplift and comfort us.

We're awaiting the nausea, it's 6:30...nothing yet. Dave says he's fine and won't be sick. Stranger things have happened.

Our house is falling apart. We have a beautiful new roof, but Kenny's window fell out last night. I mean the window just fell out. The whole thing.

Now we just pray the chemo is killing EVERY LAST ONE of the tumor cells.

Thanks for the prayers today. You should have seen Dave during the infusion, he had his headphones on, listening to Third Day, and his face was peaceful, serene.

Tuesday, October 05, 2004

Results

Tuesday, October 5, 2004 6:01 PM CDT

We met with Dr. Sacks today. According to his interpretation of the films, Dave's MRI was not what we had hoped. The scan shows what Dr. Sacks and Dr. Moraldo think is new growth in the lower part of the frontal lobe. This is growth since the scan in July. It's too early to tell if the gamma knife is really working on the spots that were treated in August, but these findings indicate new growth beyond what was treated with gamma knife. It's diffuse growth that enhances, the word they used was "speckled" so the growths are not large, but there are many spread around. The enhancement means that these areas are composed of fast-growing cells. This is not good news.

There was one part of Dr. M's report that offered an alternative point of view, saying that it could be radiation necrosis (proliferation of dead cells from the gamma knife), but that it is much too soon for that. Dr. Sacks says that it's too soon to see results from gamma knife and that the findings represent disease progression. Well, perhaps all the prayers accelerated the gamma knife? That's what we'll keep praying for. We all know Dave is not typical in any way!!

We start BCNU on Thursday afternoon. Chemo is really the only way to attack this diffuse growth. Dave will take off Thursday and Friday, and hope to be well enough to go back to work on Monday. They said that this particular chemo causes a lot of nausea and vomiting, even with an anti-emetic like Zofran. Please pray that he will be able to tolerate the BCNU and that it will completely obliterate those tumor cells. Pray also for protection for his lungs, as BCNU causes pulmonary toxicity. Also for his veins, Dave has good veins, but BCNU causes hardening of the veins, and it's likely they'll have to put in a port at some point. Also for his blood counts, as BCNU is very hard on the bone marrow....we have to watch his white and red counts, and his immunity will be compromised. Lastly, BCNU causes leukemia to develop in years after treatment. Pray Dave will be spared this effect.

Thank you to all who have rallied around us. Dave is continuing with his very positive attitude, certain that the BCNU will be the thing to do the trick. I keep saying he's amazing, I just don't know another word that describes him so well. He truly is.

Friday, October 01, 2004

MRI

Friday, October 1, 2004 0:41 AM CDT

Dave had his MRI today, September 30. We get results on Tuesday. We're praying ferverently that the gamma knife is working. We'll also find out on the 5th when/how he'll start the new chemo.

Bob and crew have been roofing like mad. In two days, they tore off the old roof, put up tar paper and flashing and have about 1/2 the shingles done. They are amazing.

Thanks so much to our church family. I'm continually overwhelmed and humbled by how much support we have received.

Thanks beyond measure to Mom Judy and Dad Bob. Thanks also to: Bob Hull, Dan Burbank, Dale Johnson, Doug Hayes, Bill & Peggy Cox, Darlene & Harvey Wellington, Deborah Prior, Richard Greenwood, Skip Pritchard and Jason.

Thanks to Wendye Bren, the cookie lady, for your caring and your "neat rows" therapy!

Thanks to all who brought food for the roofers.. Jana Scudder, Peggy, Deborah, Darlene, Mindy, Judy and others I didn't get told about. Including the person who brought the scalloped potatoes!

Thanks for the folks that rallied around Zach to cheer him up after his broken arm. Kirsten Pribilsky, you are an answer to a prayer. Thanks Karen McDaniel, Alex Falcon, Mindy Meyer, Dale & Ginger Johnson, and Lynn Ferrell. Thanks to his teachers for caring. Thanks for the note, Steve Walk. Thanks for the help on the comforter, Nancy Klicker. Thanks for taking my carpool day, Alex. Thanks for listening, as always, Deb.

I know I'm missing people. If you read this and know of someone who helped on that old roof project that I missed, please let me know.

We are so very grateful. Words are inadequate.

Saturday, September 25, 2004

Gosh

Saturday, September 25, 2004 3:03 PM CDT

***NOTE*** NEW PHOTOS ON THE PHOTO PAGE!!!


Well, everyone says hang in there, and I'm trying, but not doing a very good job.

Zach is happy not to have to have surgery. His pain is responding to the meds, but maybe a little too well, because he overdoes it and we all pay the price in a few hours. Like last night he went to the WaHi game. big mistake. He was in agony later on. He's frustrated, and I'm exhausted. He can't do anything on his own, including bathe, go to the bathroom, eat, brush his teeth, etc. I'm up with him several times a night for bathroom trips, pillow adjustments and meds. Reminds me of when he was a baby, but I'm quite a few years older and not tolerating it too well.

Dave is experiencing all the headaches and fatigue they said he might. He said, "I hate it when the doctors are right." He slept in until almost 1:00 pm today, and that's unheard of. He's so tired, and in a lot of pain and is going to ask the doc for some meds. If you know Dave, that says something. He HATES meds. Maybe he and Zach can share vicodin. They say the effects of gamma knife can be felt for even a year afterwards. Let's hope not at this level!

His MRI is September 30, not October 5. October 5 is when he meets with the doc and gets MRI results and arranges the new chemo.

Kenny is also not coping well. He's had a run-in with the custodian, the principal, his math teacher and got kicked out of football practice. He is very smart-mouthed right now and defiant. "So?" and "Whatever" are favorite phrases.

Not that I'm one to talk. I'm certainly not handling all this gracefully. I'm short-tempered, irritable, overly sensitive and easily offended. I go back and forth between yelling and crying and can't seem to find a balance. Please pray for me in this area specifically if you can.

Oh yeah, and we just found out that we can't wait until next summer to replace our roof. It has to be done now. Thank God for Bob and Judy. Today they also fixed the valve on our hot water heater. We thought our washer was leaking, but it was the hot water heater. Whew, the valve was better than having to get a new washer.

Didn't I already say "uncle?"

Friday, September 24, 2004

Good News

Friday, September 24, 2004 5:47 PM CDT

FINALLY!!!!!

SOME GOOD NEWS!

We met with Dr. Hutson this morning, he examined the x-rays and said that Zach will not need surgery. Zach is quite relieved.

Dr. H said that it's easier to cast when the swelling goes down a little more, so Z will get his permanent (8 weeks) cast on Monday.

Today Zach said, "What about PE? What about my clarinet? No football....gee, all I'm gonna be able to do is WORK!" Poor kid. :-)

Thanks for the prayers. We were supposed to travel to the mountains this weekend, but looks like Zach isn't going to be up to it.

Thursday, September 23, 2004

Uncle!

Thursday, September 23, 2004 2:45 PM CDT

Well, here's a new patient for you to pray for. Seems like when it rains, it pours, and we've been living in a hurricane for about a year.

Zach was carrying the football in a game in Pasco yesterday. He was tackled, and his left arm got mixed up in the wrong place. They called an ambulance, and he went to the hospital, and sure enough, it's broken. And broken pretty badly. Both bones are broken. We'll see an orthopedic surgeon to see if it needs surgery to have pins placed. The guy at Lourdes thought it probably would.

So Zach's football season is over. He's very sad, and worried about basketball. He'll be in a cast for 8 weeks.

He's also in a considerable amount of pain. They gave him vicodin, so he's resting pretty well right now.

For more photos, you can go to http://photos.yahoo.com/shibelle007 there are a few albums there.

On the Dave front, he has an MRI on October 5. Please pray that it shows the gamma knife is doing its job. He will meet with Dr. Sachs the same day as the MRI to arrange the BCNU chemo infusions. He'll probably start the next week.

Okay, I've had enough. Uncle. Mercy. Somebody toss me an umbrella.

Monday, September 20, 2004

Anniversary

Monday, September 20, 2004 5:33 PM CDT

Well, I talked to Dr. Friedman from Duke. He agrees with Dr. Spence. He feels like Dave is in good physical shape so he should try the BCNU before resorting to any clinical trials. I'm not sure how I feel about it all. I've been depressed since talking to Dr. Friedman, but maybe it's for the best. We're now checking with San Fransisco to see if they say anything different.

Dave is amazing. I talked to him just a bit ago, and he said, "OK then, here we go. I can do this." He's ready for battle. All I can do is cry. Evy might not use her mom's word, but I will. It's a pisser.

Friday, September 17, 2004

Chemo

Friday, September 17, 2004 7:41 PM CDT

We met with Dr. Sacks yesterday. The options from UW don't look very good to us. Dr. Spence is recommending BCNU. BCNU is an IV chemo that has been around since 1972. It's not terribly effective IV, although it has shown some promise inserted into the tumor cavity at surgery in gliadel wafers. The side effects are many. First, all the classic chemo stuff, severe vomiting for hours after each dose, loss of hair and suppression of the bone marrow, meaning immune suppression. The usual dose is every six weeks, but due to the fact that Dave's been on chemo at such a high dose for so long, even though his counts have been good, Dr. Sacks doubts he'll be able to rebound very well, and every six weeks would be optimistic. The other side effect is pulmonary toxicity...basically, it causes infiltrating fibrous growths in the lungs and can lead to respiratory failure.

The other options are CCNU (an oral chemo) and PCV (an IV chemo), they all 3 have similar (dismal) success rates, and Dr. Sacks feels that the BCNU is the least toxic so that's where to start.

We're in the process of talking with Duke. They have some promising trials. Gleevec is a chemo that attaches to a genetic marker in certain tumors, Dave's could be tested to see if he's a responder. There is also a monoclonal antibody treatment which involves using the DNA of the tumor cells and injecting a radioactive substance that would specifically attack the tumor DNA. It is very experimental, but we know of some people who tested it in the early stages 4-5 years ago and are still around to tell the tale. It would also mean that Dave would be radioactive in North Carolina for 6 weeks in isolation. Not fun.

Guess we'll see if Dr. Friedman thinks Dave is a candidate for any of the newer treatments available at Duke.

Please pray for wisdom for Dr. Friedman, and pray he will have something to offer us.

You can read about the different treatments at www.virtualtrials.com

Tuesday, September 14, 2004

UW - more details

Tuesday, September 14, 2004 10:39 PM CDT

We heard from Dr. Spence at UW. I talked with him on the phone, brought him up-to-date, and he said he'd look into it and call our local guy. Dr. Sacks called, and we have an appointment on Thursday at 11:00 am to see what the recommendation is. We'll be seeking a second opinion from Duke. It seems that UW is not terribly aggressive in their approach, and Duke seems much more so. Luckily, our local doc is also supportive of a very aggressive approach, so we'll see what he has to say. It will be another week before we can get all the scans to Duke again for a second opinion. Luckily Dr. Friedman is very quick to call back. The Duke BT site is http://www.cancer.duke.edu/btc/ if you are interested in visiting. Please keep praying.

Please also pray for the families on the brain tumor list. We have lost 6 people to this horrible disease this month, and it's only the 14th, and two others are on the final parts of their journey. It's heartbreaking. Most of them are very young, with young families, a few are children. It makes us even more grateful for every day.

Love you all, Shelley

PS. Thank you to the lovely ladies who have been there beyond measure these last few weeks. I've had some wonderful lunches, and even more wonderful listening ears...thanks Janet, Laurie, Donna and Deb. I love you guys.

Monday, August 23, 2004

After GK

Monday, August 23, 2004 11:57 PM CDT

MONDAY

Dave went to work today from 8 am to 3 pm and then football practice from 3-5 pm. He came home and looked great. His eyes are less puffy. He had a little headache, but it went away with tylenol. How strong is this guy, anyway?

He's icing his head and going to bed early.

We're still waiting to hear from Dr. Spence at UW. Guess I'll have to rattle some cages tomorrow.

KOKO (keep on keepin' on)
Love you all, Shelley

Dave's Story

Monday, August 23, 2004 11:56 PM CDT

THE HISTORY

For those of you who don't know the full story of Dave's brain tumor saga....here's the copy I just submitted to virtualtrials.com There's more to add, but this is the basic story.

Dave Meyer’s Story

In 1996, my husband, Dave, was 33 years old with two small boys and a baby girl. He was a high school history teacher who coached football and basketball, working out with his teams and riding his bike to school. He was full of life and energy and love for everyone around him. His life motto has always been, “Use things, love people.” He had a few headaches, but attributed them to fatigue. He was considering visiting the doctor, because he noticed during basketball games he’d occasionally be overcome with a funny, surreal feeling and sounds were distorted. But before he could make that appointment, the world crashed in. He was driving to Portland with his brother, early in the morning, December 23, 1996. They hit a patch of ice and the van rolled 3 times. The state patrol called our home to say he’d been taken to the hospital. It took me over an hour to locate the right hospital. By that time, I was frantic, but when I finally talked with the ER nurse, she said, “Yep, they’re cracking the nurses up. Your brother needs a stitch over his eye, but that’s it. You can come get them!” “Whew,” I thought, “That was close!” Little did I know.

When I walked into his room, Dave said, “There’s something growing in my head.” I looked at the doctor and said, “Is he okay?” thinking Dave was one fry short of a happy meal. The doctor said, “Not really,” and popped a CT film over the lights. They had done the scan because his heartbeat was irregular and his eyes were unequally dilated. Even to my untrained eye, the tumor was huge, taking up fully a quarter of his head and pushing his brain to the side. “That has to come out,” I said. “You got that right,” said the doc. “If he hadn’t been in this accident, he’d have been dead in a month or two.” Who knew you could be grateful for car accidents?

So, we were off to the nearest neurosurgery center, which happened to be in our hometown, Walla Walla, WA. We saw the neurosurgeon that night and they did an MRI. They put Dave on decadron and dilantin and sent him home for Christmas.

Dave had surgery on January 6, 1997. There were 20 people in the waiting room, pulling for Dave, all with “sympathy bandages” on their heads. The doctors were unable to remove the entire tumor because it was wound around some major vessels and his optic nerve. The diagnosis was anaplastic astrocytoma grade 2-3. The neurosurgeon had said earlier that if it was “cancer” that it was probably a slow-growing variety, since the tumor had grown so large with so few symptoms. Even though they said cancer, we were feeling pretty confident that it was slow growing and all would be okay. Until I got to ICU. The nurse was a friend of Dave’s from high school and she was crying. She wouldn’t look me in the eye. I knew I didn’t have the full story. So back to the neurosurgeon I went. “Tell me the story again.” Finally, he asked if I was asking for numbers. I said, “Yes, I guess I am.” He said, “With treatment, 80% of the people with this type of cancer live 2-3 years.” My mind reeled. WHAT??? He has 3 small children who need him. This cannot happen. But I knew that Dave had never been at only 80% his entire life. He had to be in the group that lived, he just had to.

I told Dave about the diagnosis. He smiled his famous smile and said, “Get me out of this place. Hospitals are for sick people!” He went home after only 3 days of charming the nurses. A few weeks after that, he made a surprise appearance at a community concert: “Conspiracy of Hope.” This concert benefits a different charity each year, and Dave was instrumental in getting it started a few years before. He sang a song that he wrote for our son, Kenny, who has autism. It was wonderful, and the crowd went wild!

Dave had 33 sessions of radiation. Our entire community was praying for him, bringing us meals, helping with the driving and the kids, bringing meals and groceries to our home. He went back to work right after radiation began. Staff had donated enough time for Dave to take the entire year off, with pay, but he went back to work after only a few weeks. The radiation oncologist said, “Well, what’s the plan here?” And Dave replied, “We’re going to kick its butt!” His strength and attitude are inspiring.

Dave continued to have MRI’s every 3 months. After 6 months, the residual tumor began to shrink away. Pretty soon the scans were deemed “clean” and only taken every 6 months. Dave just continued doing all the things he’s so good at, teaching, coaching, singing and inspiring. He often said, “It ain’t nothin’ but a thang. There’s a reason I’m still here.”

Dave’s tumor showed some growth 6.5 years later, March of 2004. After much consultation, he had another surgery, this time at the University of Washington. Then he began a regimen of high-dose temodar. He took this chemo for 21 days then rested for 7, as opposed to the usual take for 5, rest for 23. And right after he started chemo, we decided to take the kids to Disneyland. Kate came down with chicken pox the morning of our second day there. Isn’t that just typical? Oh well. Even then, Dave managed to smile.

Dave continued on the chemo for 14 months. During all this time, he continued to teach, coach, play music, and encourage hundreds of kids, especially his own three.

Just this last week (8/19/04), Dave was at UW again for gamma knife radiation to treat two tiny tumors that were found on his last scan. On his website, www.caringbridge.org/wa/davemeyer you can see his incredible smile as they screwed the frame into his head.

Today, he’s 41 and grateful for every day. He celebrates his survivor status by saying, “Well, sometimes you have to excuse me if I act like a kid…I’m only 7 and a half in my new life!”

When he first found out about his tumor he said, “My first goal is to be home for my baby girl’s first Christmas. My next goal is to dance at her wedding.” We all have no doubt…he’ll be there!

Saturday, August 21, 2004

After=GK Update

Saturday, August 21, 2004 9:52 PM CDT

SATURDAY

Hello all. Dave continues to do amazingly well. He went to football practice today. 9-12 and 2-5. It wasn't too hot today, only about 87, so that was a blessing.

He does have a lot of swelling on his forehead and puffiness around his eyes today. I think he's probably been on his feet too much. He's putting ice on it and resting now.

Thanks for all your continued prayers and support. Dave says he can definitely feel it. He says he feels lifted up. I say, okay, as long as Jesus doesn't lift you ALL the way up. :-)

Friday, August 20, 2004

Home Again

Friday, August 20, 2004 11:36 PM CDT

FRIDAY NIGHT

TO CHECK FOR NEWS ABOUT THE GAMMA KNIFE, SEE JOURNAL HISTORY

TO SEE PICTURES OF THE GAMMA KNIFE, SEE PHOTO ALBUM

We're home now. Dave was sooo glad to see the kids. He looks really great. He's been on the phone non-stop since he got home.

He's planning on going to football practice tomorrow. They have daily doubles in 100 degree heat, from 9-noon and again from 2-5 pm. He's amazing.

Forgot to tell you all that he wore his Walla Walla Blue Devil Football shirt that says "COUNT ON ME" like he did for both surgeries.

The picture on the front page is a picture of Dave playing guitar at Erik & Evy's house last night. He stayed up way too late singing and playing with Erik, but as he says, "It was good for my soul." He was so happy to be with Erik again and to play music.

Sonja and Canute, Evy & Erik's two children, were also a trip highlight. Canute sang along with Dave a number of times, and Dave danced the Charlie Brown dance while Canute played Charlie Brown's theme song. Sonja played and sang as well, and watched the Olympics with me. It was a very special time, and seeing them, as well as Peter and Mark, made us miss living near Seattle, it's easy when it's not raining!!

Thanks for all your support. Thanks to Denise for sitting with me yet again, and always being there when I need her. And to the grandparents for watching the children. And to Peter for a lovely post-GK dinner!

Please continue to pray that over the next 4-6 weeks, the radiation will do its job and as Diane Phillips says, "annihilate that annoying sucker!"

Love, Michelle

Thursday, August 19, 2004

Harborview III: Back to Chez Haroldson

Thursday, August 19, 2004 9:03 PM CDT

THIRD THURSDAY UPDATE -- CHECK JOURNAL HISTORY FOR PREVIOUS UPDATES

Hi everyone, it's 7:00 and we're back at Erik and Evy's house. Dave came through the procedure remarkably well. He did have a pain pill after they took the frame off his head. He's been icing it, trying to prevent swelling where they screwed the pins in.

Right now, he's sitting with Erik and playing Erik's guitar. It's wonderful to hear him play and sing. He has an incredibly happy heart. It's amazing to see the affect Dave has on people. The nurses at the hospital just love him. His generous spirit touches all those around him. He even helped Denise and I finish the last answer on the crossword puzzle!

Now we wait. They said that we could expect headaches, fatigue and nausea in about 4-6 weeks. That's when the tumor cells will begin dying off. They'll do an MRI around that time frame to see what's happening. They did say that if other small tumors do pop up, they can use the gamma knife again. This is good news, although we're praying REALLY hard that we NEVER have to do that.

Meantime, we'll be blasting it with a new chemo. Hopefully we'll find out very soon what that will be.

Dave has certainly felt your prayers and support today. He said that after they put in all the lidocaine (which was pretty ouchy) and were beginning to place the first screw, he felt overwhelmed with anxiety. Suddenly, he felt a sense of deep peace wash over him and he was completely calm.

I've got to get some sleep. Thank you to everyone, please continue to lift Dave up in your prayers for healing. Thank you to the prayer warriors who met at church today. Thank you to Denise for sitting with me. Thank you Peter, for making us laugh. Thanks to Mark for your hugs. Thanks to Janet for "McDonalds" money. Thanks to Erik, Evy, Canute and Sonja for opening your home to us.

Love, Shelley

Harborview II: MRI Results

Thursday, August 19, 2004 1:02 PM CDT

It's 10:00 am. Dave is in the machine, receiving the radiation right now. He is listening to Switchfoot, Audio Adrenaline & Relient K. He'll be in the machine for one session of 62 minutes and then a second session of 24(?) minutes.

The MRI did not have good news for us. The lesion that they had seen before has grown since July 19. They also noted several other areas of growth. One area that was significant is in the motor area. These other new lesions are very small, but they feel they represent true growth, not just an abnormality of the scan. The good news is that they can treat these lesions as well, so they are going to treat all the tumor growth that is visible.

We'll need to meet with Dr. Spence at UW about a new chemo regimen to take care of the cells that are growing, but are not yet visible on the MRI.

It's very scary news. Please keep praying. Dave is holding up well, and taking strength from all of you.

Love to all. Michelle

At Harborview

Thursday, August 19, 2004 12:05 AM CDT

Hello, we're at the hospital now. Dave has had the frame placed without any medication at all. He's feeling very tough and macho about that! He had a snack (thanks Evy!) and will be going into the machine about 10:30.

Thank you all for your prayers. He's really feeling the support, says he's feeling a great sense of peace.

Will update you on the progress as we go.

Denise and I have almost finished the jigsaw puzzle!

Love you all!

Tuesday, August 17, 2004

Tumor Board

Tuesday, August 17, 2004 1:13 PM CDT

We met with doctors at Harborview yesterday. Dave has a new growth in his right frontal lobe. This new growth is very small, but it was not evident at his MRI in May, and shows on the MRI in July. It's quite scary that it has grown so quickly, and is in a new place. It's also scary that it grew while Dave was on temodar (chemo).

The doctors from the tumor board are recommending gamma knife. Gamma knife is high intensity radiation that is very accurate and focused on the tumor growth. There are 201 beams aimed at the tumor. (See the main page for a link to information about gamma knife, you have to scroll to the bottom.)

On Thursday, August 19, 2004, Dave will undergo gamma knife at Harborview in Seattle. We are hoping that this will halt the growth of the tumor.

He will go into the hospital at 7:00 am and they will place a halo or frame around his head, by screwing it into his skull (ouch! They will give him some IV pain meds). They took x-rays yesterday to determine the exact placement, because they want to avoid the area of his past surgeries, because this area is vulnerable to fracture.

Then they will do an MRI to determine the exact area of the tumor. Then they meet to plan the radiation exactly. Then Dave will be placed into the gamma knife machine. Depending on the shape and size and complexity of the growth, he will receive 1-4 "shots" of radiation, each consisting of 201 beams. They say this takes 1-3 hours.

The first MRI after radiation typically looks worse than before because of the swelling. The radiation will ruin the DNA of the tumor cells so it cannot multiply. So we won't know for 3-6 months how well this worked.

Most people tolerate the procedure pretty well, with minimal headaches and nausea. It can induce seizures, however, so they want him to stay in Seattle on Friday. Long term, there are two scary things. One: Dave has a large blind spot in his left eye, a result of the last surgery in June 2003. This gamma knife procedure could possibly damage the vision in his right eye. If that happens, he won't be able to drive. As you can imagine, he's not too keen on that happening.

Another danger is that since Dave has had radiation previously, he has about a 15 percent chance of developing radiation necrosis, which is proliferation of dead cells. This can cause the same problems the tumor does and would have to be removed via another surgery.

We will also have to meet with the neuro-oncologist in Seattle, because the temodar is obviously not working, and we need to decide what route to take.

So, please, please, pray for Dave on Thursday, pray for the doctors, too. Pray for God to heal him of this new tumor completely.

Monday, August 02, 2004

Caringbridge begins...

Monday, August 2, 2004 3:39 PM CDT

This page has just been created. Please check back for additional updates.

I am moving the journal updates from Dave's Caringbridge site to here. They're easier to link to on the blog. On Caringbridge, they are one big chunk. This was the very first post.