MrDuke

Good News!!!! One day at a time.

You did exactly what we needed... It makes us feel better knowing people are in our corner. Keep 'em coming!! My wife is starting to read this thread and it makes her happy. AND WHEN SHE'S HAPPY....I'M HAPPY, know what I mean?? Thanks,man Duke

I was just gonna say that. Honda motors are practically bullet-proof. You'll get an easy 150K out of 'em. Unless, of course, you wind it out to 8 grand every time. Ask MadBean, he knows which cars have more problems than others.

R2D2 or C3PO?

I have an acquaintance that's a labor lawyer. I could give you her number but the labor laws in Ohio may be different than where you are. There are enough "exceptions" out there that I hesitate to offer advice even though I've hired and fired plenty of people. I would listen to MrX and contact the Labor Dept of your state.

Update: She didn't need spinals and biopsies like I thought so that makes me happy. Those aren't scheduled until next week. Her ANC tanked out at 100 (1000 being critical) so she is in the "bubble", so to speak. Remember that movie about the kid in the bubble?? Didn't you just hate it? How ironic is it that I wish I had one of those things right now!! She had a rough night and slept with Kel. This morning has been average...we'll see how it plays out. Kel and I seem to be getting along better. This separation is a true test of our marriage. I'm stuck over at my parents doing NOTHING and she's at home struggling to do EVERYTHING. I think we're getting along better because she knows that I am really struggling with the fact that I cannot contribute. All I can do is pick up the phone and listen to her vent and listen to the chaos in the background from the kids. I wish I could be knee deep in it--having my ankles being run over by a stroller, stepping on Legos, pulling my son out of the dog cage that he loves to be in...all of it. Normally when you're knee deep in it, you're screaming, "Knock it off...I can't wait until it's your bedtime!!". Now, I yearn to be involved and I can't. Quite a change in values and perspectives, eh? It almost feels like I'm a ghost roaming the house. They can't see me, but I can hear them (on the phone) and see them (if I visit after bedtime). I almost feel like a guardian angel, unable to speak but always thinking and watching out for them. I want to interact with them SO BAD but I know I can't because I'm sick. Thanks to Fatty, my perspective has changed from a submissive "why won't anyone cut us a break" view to a stronger "Satan enjoys my misery, don't give him the satisfaction by taking refuge in God's arms" view. I CAN'T EXPRESS MY GRATITUDE IN WORDS FOR THAT ADVICE. I feel stronger. I feel calmer, more at peace. I have focus. After re-reading all of this, I seem to be on quite a roller-coaster of emotions. I'm sure I'll have more bad days in the near future, but I'll get through them by referencing these past few days and seeing all of your words of support. I truly mean this with all of my being, God Bless You All. Brian

That's GREAT NEWS!! Still praying.

American mild wings or hot, tongue-transplant wings

I feel better today, partly because of some self-realization and partly from everyone's outpouring of concern. Thanks to all for your genuine concern and your posts--they really do make me feel better about myself and my family's situation. I wish I could personally thank every one of you...maybe I will at fragfest. However, I must be honest in saying that I am disappointed with each and every one of you for not warning me about the outcomes of drinking with Fatty and I hold each one of you accountable for my headache today. Lesson learned: Only court supervised visitation is recommended. Rev- Your post made me cry (and, no, I'm not ashamed to say that)--thank you. Sometimes you just amaze me by going above and beyond. Fatty- I am grateful for last night. Thank you for allowing me to vent my frustrations. I have a great deal of respect for you, even more than before. Your a good man. Nothing like laughing over some H stories,eh? Thomas A. -- My apologies for not personally acknowledging your post. I missed it which is strange because I check this site frequently. Thank you!! Heartless -- so which is it?? "not so" or "so". I am humbled by your comments. I certainly don't feel like the person you described--it made me feel better, Thanks. Playaa-- You keep me going sometimes...the right post at the right time. God Bless you, man. Gooter -- heh,heh...Gooter...LOL OK...I'm back in the fight. Attitude is better, faith is better, headache is better. I'm staying at my parents right now because I have a chest cold and I can't be around Danielle due to my coughing. Difficult, but manageable. Tomorrow is a big treatment day including spinals and bone marrow biopsies. We'll see how this roller-coaster plays out tomorrow... Later, Duke

Very strange. I know everyplace is different but I would say you'd get a slap on the wrist for having bikini girls and that would be the end of it. Have they taken anyone else's HD?

Rev, I don't even know what to say right now...what to do. It DOES means a lot to me that so many are praying for her. I thank everyone for their prayers. It's just getting harder to experience this day after day. It's relentless and never seems to get better. Every new day brings another little problem and those little problems are adding up. This morning was worse: she woke up and her legs hurt so bad she didn't want to walk. I can't even tell you how bad I felt. I just left and went to work early. Do you know how guilty I feel for leaving my wife to deal with that? For leaving my daughter while she hurt??!! I'm crying about it right now...It's killing me. My anger is increasing every day and I don't like it. I just feel rage. I feel this calling that I have to do something, but I don't know what that something is... or where it is. I have no direction, nothing to focus on...other than watching her go through this. Add in the fact that I'm supposed to be comforting and supportive to my wife, daughter and son...which I don't feel that I am, and it compounds my feelings of anger, inadequacy and guilt. I feel like I'm letting my family down. I'm supposed to be the cornerstone, the bearer of the weight and I'm not doing the job. I'm just losing it. I am physically and mentally exhausted. I don't want to do anything or go anywhere (not that I have time to). Our doctor has us on medication, but it does not help. In fact, it makes the nightmares worse. I should follow my own words of advice and take comfort in God, but I don't and I don't know why. My thoughts are irrational now and I am ashamed to say I feel doubt. How much pain can one take? Why all the suffering?? WHY DOES A CHILD HAVE TO SUFFER!! WHAT DID SHE DO??!! WHY CAN'T I TAKE HER BURDEN, HER PAIN, HER SUFFERING??!! I'm hurtin', Rev. I'm really hurtin'...

Update: Today is Danielle's b-day and my little one turned 3 today. I can't say I'm happy, I can't say I'm thankful to make it to today, I can't even say I feel blessed... I've just had enough of this crap. The chemo is affecting her ability to walk which causes her to fall down without warning. That just kills me and I want to scream with every bit of being in me, "ENOUGH...SHE'S HAD ENOUGH, JUST STOP!!!". But it doesn't stop... it just never stops. And what does she say?!! "I'm ok, daddy, I'm ok. Just a little fall." That innocence and resilience makes me hurt that much more. Every day this cancer changes her into someone I don't want her to be. The hair loss, the walking problems, talking problems, eating problems, bone pain, mouth sores, GI problems, sleeping problems, healing problems... I hate it. I can't enjoy watching my son grow up, I can't enjoy time with my wife, I can't enjoy time AT ALL. Everything seems to be difficult or leads into an argument in some way. I would never tell my wife this, nor would I let Danielle see how all this affects me. But, I'm really losin' it.

Right back at ya, man. Be strong for those who need you.

Heartless, Everytime someone gets something from reading about this nightmare, it gives me comfort. Thank You! Kids are precious...hug'em up every day. Can't chat much now-- going through a REAL hard time. I'll chat more later. God Bless You ALL, Duke

Thinking and praying.

gOOters I went out and got CS:S last night at 10 pm in an icestorm and I was up until 2:30. Not very impressed at this point but that's probably just "resistance to change". Update to all: Today is the first day of the new protocol. The docs plan to hit her hard with methotrexate and vincristine. If things go well and she sleeps the next 24 hrs, I may jump on tonight and let you beat up on me. If things don't go well, well... we'll see what happens. She is very upbeat and acts like a normal 3 YO, only a balding one. We are cautiously optimistic on her condition and my anger level is dropping. I don't know if it's us adjusting to our new "norm" or if we're truly getting things under control. I feel better and I'm not as quick to snap at people, which is a good thing since I work in the retail sector. I plan to take my wife out to dinner and maybe a drink or five afterwards. Maybe we can be human beings again. Still waitin to hook up with Fatty and Mrs. Fatty (I'd never say that to her face) What's your status, chief? Everyone healthy? I gotta buy you a bday drink.

LOL, You won't kill me again??!! You'll be lucky to kill me once...and THATS if I turn the corner and happen to run into your knife. Bring it on Junior!! I don't even have CS:S yet--I hear it's quite an adjustment. Trying to get the Mrs. to open the checkbook is like pulling teeth but maybe I can convince her that the goober/cooter/gooter man is involved and she'll lighten up and let me buy it. Is it better to buy or download? I heard it was better to download but I don't know if there's merit to that. I hear ya on being busy. I might get 20 minutes a week and that's late at night. I'll jump on an iceworld map just to keep the rust off. No news is good news on the little one. Now the younger ankle biter, well, that's a whole 'nother story...the little monster. I'll PM you when I get CS:S (and practice a bit)... We'll hook up for sure. Besides, I owe Bean a few jabs so I'll let him know too. Thanks man, Duke

We usually get pretty good service when we go out but I'm sure everyone has a horror story about bad service. Maybe you smelled bad or something

Happy B-Day!

12/30/04 update: Danielle is done getting spinal taps and bone marrow biopsies for a month or two. What a relief!! She started IV methotrexate once a week. The doc said they up the dose every visit until she has bad side effects. Wow, how do you swallow that information?? What do you do when you KNOW someone's going to hurt your child like that? Needless to say, my anger is at the "nuclear" level. My counselor said that playing CS could be a nice stress reliever so I plan on beating up on you guys soon. I'm anxiously awaiting the "knife in the chin" from Gooter (heh,heh...Gooter). He said she probably won't get sick or have sores this week, but probably next week. Christmas went well and was a joyous time for us. I hope all went well for everyone. Thanks again to all of you. Duke Beaner--when are you coming up to visit?

Update: Tuesday was rough. We received new information and protocol guidelines on the study we enrolled in. The study may (MAY) increase her survival odds by 1-9%. However, it's a tougher road to travel. That was one of the hardest decisions I've ever had to make. You commit your child to two more months of hell for the chance of better survival odds. Talk about rolling the dice!! Everytime I see someone type that, I think of Danielle. She had bad vomiting Tuesday afternoon so we had to deal with that. Today (12/23/04) is much better. We hope to spend Christmas with some of the immediate family. Aug--I think about your family often. How is everyone--including you and Mrs. Aug? I hope the situation is less stressful and that she is improving. Norguard-- Thank you so much for your posting. I agree with Aug, you are an eloquent writer. I really gain strength from everyone's postings and I come here often, actually daily, to draw strength. Yours just put a smile on my face...Thank you!! Please feel free to check in often...I really appreciate all the words of support. Christmas is upon us: remember the real reason we celebrate it and embrace the gift!!! If you have kids, go hug them and spend some time with them...If you don't, go call someone you love or someone you haven't talked to in a while. God Bless, MrDuke

Yes, it's a long road. 2&1/2 years of it. If she has a relapse, the 2&1/2 years start all over. But by the grace of God, things have gone well. It's bitter/sweet because every day is another day closer to the end of treatment, but every day is another day I can spend with my daughter. So in some cases I want time to fly, and other times I want it to stand still. Brian

2&1/2 years is what we were told. I spoke to quite a few cancer parents and they said the first 8 months is the worst. After that, it's fairly manageable. So being optimistic, we're really at 45/240. That's almost 20% through the worst...not bad, not bad at all. Thanks Rev!

Fast update: Counts are good, cancer still in remission, and no side effects (other than hair loss) as of Friday morning. Today is day 45 out of 910 days of treatment and we're going strong.

First and foremost, you have my prayers and support. If you need to chat, PM me and we'll hook up... You can vent as much as you want. I know it's frustrating when someone says...I know someone who had (whatever you/your family member has) and they pulled through just fine. It is human nature to try and provide comfort by telling a relating story that has a good ending. But to the family going through it...sometimes you just don't want to hear it. So I won't go into any details. I WILL pray that his heart condition is of the benign type and I pray that it reverses itself. YOU hang in there and check here often for support. I'll tell you firsthand that it makes a difference...but you already know that. Duke