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.