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.