I need your Prayers

[MrDuke]

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!

[auggybendoggy]

Duke,

Still my heart breaks reading this. I too am still with you and again if you need anything pm or call or email. I will pray for her and for your family cause it does not sound like fun. I still remember the reality checks you mention. Seeing emmas heart rate at 220 was SCARRRRY and made me almost panic.

 

Hang in there and keep up the love.

 

also as for the drug...wOw! that sounds awsome, possibly you may be a millionare next year

 

Auggy

[Norguard]

Mr. Duke,

 

I must say that reading this whole thread, my heart aches for you and your wonderful family.

 

I can't purport, or even imagine that I can comprehend what a heartwrenching experience this has all been for you. I'm a little younger than most in this thread, and just now, am beginning to seriously contemplate my first house, wife and child. Something that I don't expect to be blessed with for quite some time, yet... Even so, you find willingness to submit yourself to God, in faith of things not yet bourne, especially in this situation, which would see most parents clamouring for results presently. Something, anything, to validate their parenting to themselves, because they feel threatened.

 

Your situation is as mountainous a testimony to me as I am sure it is to others.

 

I thought God was building the penultimate "testimony of coincidences" through my life, and perhaps I can still take on most young adults, but I was just shown, again, that greater people have stayed rooted through even harder situations, and still clung to God's love to see them through.

 

My employer lost a child, just after birth, last spring and when he lead worship at her service, he sang an old Keith Green song, taken just a little out of context... ...and yet, when I hear your story, the same song pops into my head, in the same context.

 

Perhaps you know it, already, but the lyrics were:

 

Oh Lord, you're beautiful.

 

Your face is all I see.

 

For when your eyes are on this child,

 

your grace abounds to me.

 

I want you to know that my prayers are going out to your family, for continued strength and for peace.

 

 

Sincerely,

 

Sean

[auggybendoggy]

Norguard,

First let me say...you're a good writer

 

now.

 

I love Kieths music. It's inspired me for quite a number of years.

His commitment and seriousness was sooo encouraging.

 

you seem like a nice person sean

 

havent seen you around but welcome if your new perhaps you're older than me to GC

 

Auggy

[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

[MrDuke]

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

[appalachian_fox]

Fight the good fight! And keep the Texas Pete's out of the house for awhile, for gosh sakes!

[MrDuke]

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?

[gOOters]

sigh

 

Im glad your Christmas went well. I am still praying.

 

Regarding the knife, it will probably be in the back of your noggin, as it is tough to see me coming!

 

Actually, Im fairly sucky as CS:S as I am too busy to play much anymore

 

Lets make a date to play for a few hours. After knifing you, I won't kill you again. I'll let you take out your angst on me in the server

[MrDuke]

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

[gOOters]

Be sure you PM me. I bought it because Im old fashioned. Was easy enough to load as I already had STEAM up and running.

 

The single player will amuse you for a long time to come too

[MrDuke]

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.

[Thomas Aquinas]

Sometimes, when I try to imagine how Christ could have the courage and the love to give himself for all of us, I run into a wall mentally. I cannot comprehend how much love that truly is, or how deep it is. I know that God loves you Brian, and your little girl, and I would be grateful for the chance to include you, your family, and the team of professionals working to help your daughter in my prayers.

 

You're cared about by more than just Heavenly Father.

[Fatty]

Ya, we're all good round here. Only have 1/2 electric right now.

 

Are you ready to be taken out for some dinner? Do you have grandparents around? Other family that could hold the fort down while you get away with your bride for a couple hours?

[gOOters]

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".

<{POST_SNAPBACK}>

 

Ya, Im not overly impressed either. Some of the hit boxes and shots registering (or not) leave me scratching my noggin. Plus, I really have a difficult time seeing the bad guys.

 

I will be on there late nights this weekend probably. Itermittently tomorrow too.

 

 

On a different note, I still think and pray about your family. Kids are so tough and resiliant, Im prayin' for yours!

[Heartless]

I just stumbled upon this thread and although I'm not religious, I'd like to say to you Mr.Duke that I'm so sorry for you. Less than a month after you learned that terrible news about your beautiful daugther I was celebrating 1 year with mine. After reading through this entire thread I'm so touched at what everyone had to say and I'm so hurt by the whole story.

I feel way too lucky, I feel like I've been blessed unfairly. I don't deserve to have my beautiful and healthy daughter. But you, listening to what you have to say, makes me see that you really to deserve better than what your life is handing you.

 

I am so sorry that you have to go through so much. I am so sorry. Every tear that falls from my eyes as I write this is another prayer for your daughter, I am so sorry.

 

You are my hero, I would never be able to see my daughter go through such pain and suffering and still be so strong. You are an amazing man with such an inspirational story and it really gives me the incentive to be a better person and to stop taking everyday with my child for granted. I realized after reading this all that she could be gone tomorrow, and that scares me.

 

Please know that I will think about your daughter everyday when I look at mine and I will pray for her. I hope everything turns out the best way possible and I'm glad to hear all the good news. I'll make sure to check the caringbridge site everyday for new updates.

 

Good luck.

[MrDuke]

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

Edited January 13, 2005 by mrduke

[Playaa]

you're in my prayers today duke

[MrDuke]

Right back at ya, man.

Be strong for those who need you.

[MrDuke]

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.

[Playaa]

here's a quote a semi-wise man once told me:

and there is the window the the Lord looks for, brother...and you know it. We can't handle it...on our own.

 

you're in my prayers tonight man

[ConGregation]

I wish I could carry some of your load... bear some of your pain

 

It is at times like these where the only thing you can say seems so... so inadequate. And yet it is the most powerful thing a man could do....

 

I am and will be praying for you.

[MrDuke]

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'...

Edited January 15, 2005 by mrduke

[ConGregation]

<realizes he can do nothing to help. Can say nothing to help. Cannot even empathize or even sympathize properly. Realizes only a tiny portion of a father's suffering. Sees only a sliver of his pain. Feels only an ounce of his burden. A heplessness comes over him but even then he realizes that his heplessness is NOTHING compared to the father's.>

 

I feel the need to tell you to be strong. To trust in the Lord. To let Him help you and hold you. It would be good advice but I would feel like an ant telling an eagle how to fly.

 

So this helpless little ant cannot do anything on his own. But he will do the only thing he can. With all his inadequate strength, he will beseech His God to help. It is all he can do.

 

I will be fasting and praying for you all day.

[Fatty]

PM'd you my phone, Duke. Don't consider calling me sometime. Call me and let's get together. You and I. 15 minutes, an hour, whatever.

 

There's nothing I can say to make the hurt go away. But your boat is rocking, there's a big storm right now. God is there, although you can't see him at the moment...the same God in which you found strength, is there. You shake your fist at the stormy sky, eyes closed by the hard rain slamming into your face.

 

Your family is there too, in the boat with you. Looking at you, needing you to carry them through this storm. They sit huddled together, holding each other, looking for you to somehow steady the boat.....well, cause you're Daddy. To your family, you are everything.

 

I am praying now that you fall to your knees and ask command the Lord to fend off the evil one, the one who delights in pain, division, arguments, doubt. I say command because I believe we're called to pray in confidence, and right now is the time, because I can almost hear Satan snickering.

 

I am joining Rev in his fast and prayer, and I will be honest: my personal prayer will be that of defense, and I will be confident.

 

Stand up.