I need your Prayers

[ConGregation]

Hi Gooter.

[auggybendoggy]

mr duke,

how are things goin? Emma is now home and on the road to recovery but she wont drink. She hasnt drank above 1 ounce but once and over a period of 8 days now.

 

she hates drinking because her pallete allowed liquids to go up via her nose. You know when you take a drink and laugh and it goes up to your nose. That was an all the time occurance so we believe it made her liquid defensive. We did find a bottle that worked pretty well but now with her mouth all sliced up she doesnt want any liquids in there.

 

Man what a headache.

 

Aug

[MrDuke]

Aug,

 

I've thought about you many times this week but have been afraid to call you.

Not that I'm intimidated, but I'd like to have 30 un-interupted minutes to talk with you and I can't seem to get the time. My phone just keeps ringing.

Danielle won't take a certain medicine and I've spent 4 days trying to formulate a compound that she'll take...(about the only advantage of having your dad being a pharmacist).

I thought about you and how your daughter may have swallowing issues. I'm sure the docs are on top of this but it never hurts to ask a few questions.

Can she handle food products with thicker viscosities such as pudding or jello?

If so, you can purchase a thickening agent (Thick-It) to create pudding-like products from any liquid she likes. I'd stay away from high-sugar products, though.

I had some patients with similar swallowing issues so I'll dig up my old notes and see if any of them might be helpful to you.

Give me an idea of what and how much she can tolerate.

I know she'll have to learn to eat, drink and swallow all over again and that will be difficult for all.

I pray that God gives your family strength and the doctors wisdom.

 

As far as Danielle goes, Keli posted her latest day's events on her website.

I'm really confused about my emotions (not gender confusion, Bean!). I have such an inner peace about this whole thing that I don't consider bad news "bad". It's just news that I have to incorporate into my life. Of course, when I hear good news, I go nuts!!!

But the fear is gone, that's for sure. Maybe this is the "acceptance" stage you hear about but I think it's more of a "faith" stage.

 

As a dad, my analogy to this test is this: Be the rockwall on the oceanfront. Somedays will be rough and somedays will be easy but you WILL take a beating everyday. Stay strong. As all things do, you will wear down over time, which is ok. God will give you the strength to endure. As long as you are strong for your family through the day-to-day stuff, that is what is important. (Besides...nobody can see the rocks crying when it's dark outside).

 

I'm praying for you and your family, Aug. I know I don't have to say it, but I will--Stay as strong as you can, be the rockwall.

 

Call me at work if you want help with her swallowing...or just to talk. 330-836-6306.

[auggybendoggy]

duke,

I will call.

 

Emma is doing well as far as we can see but her mouth is like a bank vault. It only opens at certain times.

 

I have been able to get her to drink milk from a glass if I share it with her then she gets happy to have daddys food

 

We're kinda afraid cause we read on another cleft palete repair site (a hospital in texas for cranial facial) and it says DONT put anything solid in their mouths. Dont let them put their fingers in their mouth. The reason is the skin that is grafted inside is thin and can tear easily until it heals into one layer. But the incisions (slices) are weak even at this stage and so were afraid she could have a tear which means another surgery. OH NO!!!! I truly think it was tramautizing for her.

seeing her in such misery with her toung stiched and taped to her cheek was horrible to look at.

 

But with that said so far she looks good. Shes learning how to swallow again and breath differently.

 

I'm glad to hear the inital hit of the news you received is settling. I can only imagine how you must look at her like never before. Thats a good thing. Her heart is for you and your familys. It's a faith we all lose at some teenage point

But the reality of life and love is amazing is it not?

 

Thanks for the prayers everyone, my wife and I truly appreciate it.

 

Auggybendoggy

[MrDuke]

Aug,

 

That pretty much matches up with my notes. The patient I had was 9 months old and started out with small amounts of thin fluids. It's almost contradicting because I remember the mom saying the water usually ended up going up towards his nose instead of down his throat. That caused distress and anxiety but couldn't be helped because thicker agents might tear the tissues.

Austin danced a fine line because his tissues were healing so he couldn't handle anything other than thin fluids, but once he hit "the point", he had an easier time with thicker agents (the bolus stayed together and went down all at once).

MY problem was trying to gage the viscosity of the liquid....but we worked it out.

 

It sounds like progress is being made but she's suffering along the way. Believe me, I know how hard it is to watch your child suffer. You feel helpless, angry, restless, scared...etc. Stay strong.

 

I've found that looking for the little things, some of which go unseen by the docs, tells you more about the healing of your child.

Watch her eyes and eyebrows-- do they light up more and more as people come in?

When Danielle was in her comfort zone (before all of this), she used to play with her hair. She did not do that in the hospital until the next to last day, but I picked up on it and it told me she was healing. Watch for signs like that.

 

In the mean time, let me know if you need any help with getting meds down her throat. I've spent the last 8 days whipping up weird potions to get things down Danielle's throat. I can come up with something and phone the recipe over to whatever pharmacy you go to.

 

Be the Rock,

Brian

[MrDuke]

To all,

My faith is being tested, yet again, but it's not life and death so we'll be ok.

First of all, rather than ramble on, you can check on Danielle's progress at

http://www3.caringbridge.org/oh/deryck/

She is improving and her side effects are...minimal, considering all that is possible.

I have been working on a pharmaceutical compound (so she can take her medicine without the "yuck") for 3 weeks now and have a big goose-egg to show for it...but I will figure it out. Maybe not in time to benefit Danielle, but some child out there will benefit.

 

The reason I say we're being tested is that on Monday we became the victims of possible identity theft. Our bank account was wiped clean as of Monday. I mean, really, just how much can one family take??!! I'd rather take a knife in the chin from "Gooter", not that he's skilled enough to get that close, than to have to deal with this nightmare on top of everything else.

I tell you this, not for your sympathy, but to learn from it. The compromised card was our check and cash card, not a true credit card. FYI- C&C cards MAY not be protected by the $50 limit law. Periodically check your finances to ensure security and confirm that your C&C card has fraud protection. Also, look at the fine print--it makes a difference.

If by some miracle you know someone who is involved in this type of activity (don't be offended...as a pharmacist, I associate with people on the wrong side of the law so I know the contacts are out there), let them know that, NO, the banks and credit card companies don't always foot the bill and, YES, it hurts REAL people. That's $1500 plus overdraft fees that I have to do without during an incredibly difficult time.

To whoever may be responsible: enjoy the TV from Circuit City, the fine bed linens from Bed,Bath & Beyond and the espresso maker from Starbucks--may God forgive you.

 

 

Fatty-- Sorry I haven't gotten back to you. Things are fast and furious around here. We are free this Monday night to do carryout. We can't take Danielle out so it'd have to be you coming over to our house. Also (sorry to be so anal), if either of you are less than 100% healthy, we have to make it another night.

All of this is assuming you are free. Let me know if it works for you, I'll give you directions then.

 

 

Your brother in Christ,

Brian (MrDuke)

 

BTW, I want to make a contribution to the GC since I spent/plan on spending most of my playing time here. What's the easiest way to contribute? And please don't tell me you take credit cards...I can just see the sarcastic jabs coming.

[Fatty]

You know, having 2.3 children of our own, during this season it's not safe to say that someone isn't either sniffling or been around someone that's sniffling (kids and daycare and me, well I teach so obviously I'm a carrier). I don't get sick hardly ever, but that's not to say I don't have 5th grade germs on me.

 

With that said, let's just wait. That's not anal, that's being a father.

 

As for GC, paypal is the method of choice....feels a bit awkward to even answer that question in this same thread, so let's put that off or PM me or something.

[appalachian_fox]

Duke,

 

Your family, especially Danielle, is in our prayers. Wife and I pray God's will be done and understanding in this time, especially with the garbage of the possible identity theft coming up. I know several people who have been through identity theft, and I can only extend my sympathies and if you do need some possibly advice, though there are people more educated about the process than I.

 

If you need anything to help pay for bills, etc. while the bank straightens out the situation, I think we (I'll speak on part of the whole community) can arrange to help you out. It's not a handout, it's a community coming together to get one of our own back on his feet after being knocked down. It's the least we can do.

[Playaa]

If you need anything to help pay for bills, etc. while the bank straightens out the situation, I think we (I'll speak on part of the whole community) can arrange to help you out.  It's not a handout, it's a community coming together to get one of our own back on his feet after being knocked down.  It's the least we can do.

<{POST_SNAPBACK}>

 

roger that

 

just gotta say, step outside yourself for a sec and think about the family. If you really don't need help then fine...but don't turn down help because of pride.

 

you guys continue to be in my prayers

Edited November 19, 2004 by Playaa/Pselus

[MrDuke]

You guys are the greatest!

I sincerely thank you for your offer but someone else beat you to it! The generosity and compassion out there is just amazing.

Our CFO came in personally helped us out...almost cried when he did that.

Man...I am so blessed. Between my family, you guys, my employer, and all those expressing their love and compassion, I know I can get through this.

My thanks again!

God Bless,

MrDuke

Edited January 21, 2005 by mrduke

[MrDuke]

Just got back from the hospital. My 1 year old just fell down the stairs at grandma's and knocked his bottom front tooth out of the socket. Not knocked out completely, mind you, just out of socket--root exposer and all. They couldn't salvage it so they pulled it. Poor little guy. It's not a life or death situation so I just label it as frustrating. Somewhere in the future I'll explain that knocking out a tooth is nothing in the grand scheme of things...he should suck it up!!

If you guys are still praying, I humorously ask for some leniency, or smoke and mirrors, or to keep me off the radar, or whatever will work to get this bad ju-ju off me.

Seriously now, this is turning into something analagous to a really bad poker night...always 3's and 8's.

[appalachian_fox]

Hang in there!

 

*insert picture of cute kitty grabbing onto a branch*

[Fatty]

Mr. Duke, can we add you guys to our pray concerns in our church (Northampton)? Let me know! Send me a PM.

[MrDuke]

Just PM'd you.

 

To All,

I know my wife will update the website but I wanted to let this community know whats going on because you, collectively, are getting me through this nightmare and for that I thank all of you.

 

My daughter received good and gracious news yesterday. Her Absolute Neutrophil Count (ANCs), or the "fighters of infection" were up...WAY UP. Dangerously low is 1000 and she was at 100 due to the chemo. This did not upset me as I knew it would drop. However, she went in for her treatment on Tuesday and her ANCs were 2700!! Let me write that out to feel even better - - two thousand seven hundred (and 00/100 cents,heh,heh).

That means she can go outside, go to church, McDonalds, the playground, the store - - just about anywhere.

 

And on a serious note, I still feel guilty. I feel guilty because Aug is still going through a hard time. I feel guilty because a close "cancer friend" contracted pneumonia and has a small window of survival until she can get a bone marrow transplant...she's 10.

I feel guilty because I received some good news, but there are still people hurting out there that need help and support.

I ask for your prayers for the others that are still hurting.

 

Aug--I hope all is well with your little one. I continue to pray for you.

Remember- Be the Rockwall, you will hold.

[MrDuke]

Just a quick update--

Danielle is swelling up like an oompa-loompa and it makes it hard for her to walk, swallow or breathe. She is losing some of her reflexes due to the chemo which causes the walking problems and choking problems.

Her pain is increasing which makes her grumpy.

I tell you this not to paint a bad picture, although it is, but to let you all know that I feel blessed to have another day with my family even though things may seem dark. Her condition isn't pretty, but I feel it could be much worse--liver failure, kidney problems, etc. so I am accepting these days as good ones.

 

I feel blessed because even though we are going through a rough time right now, there are others who are going through worse times than we are (and I pray for them). They are everywhere--just hurting and wanting someone to say, "Are you OK?". Please don't be afraid to ask someone who's hurting if they want to vent. Trust me, it means a lot.

 

As a father, I am dealing with a great deal of anger and rage. My family is being "attacked" and my core instincts are firing on all eight cylinders to "protect"...but there is nothing to direct the anger and rage at, nothing to look at and say, "THAT is what's hurting my family". So it becomes an internal struggle and it's tearing me apart.

We found a verse that provides me with comfort and I thought I would share it with all of you. It's also posted on Danielle's site.

 

The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Phi 4:6

 

It seems strange to grow close to many of you even though I've never seen your faces, or spoken to you on the phone. But that's not a bad thing. I check this forum daily for your words of support, and I thank you all for it. It helps me.

 

Your Brother in Christ,

MrDuke

[Playaa]

my church in Washington Missouri is holding your family in their prayers.

[gOOters]

Let me tell you buddy that your kid is lucky to have you for a Pops. I dunno why the heck these things happen. And cancer in kids is my tender spot already. Lets just say that if a kid had to struggle with something like this, I pray to God that they always have someone like you in their corner.

 

As a father, I am dealing with a great deal of anger and rage. My family is being "attacked" and my core instincts are firing on all eight cylinders to "protect"...

 

I think it's a HEMI!

 

Still praying for teh shorty and your family...and you.

 

- "gOOter"

 

 

 

P.S. Notice my lack of response earlier, Rev?

[appalachian_fox]

We're all in your corner! Don't tear yourself up inside...I can only imagine how hard it must be to not have a target in this, but dont' let it hold you back. You're doing a great job so far, keep it up. The Shorty's got a great dad rooting for her, keep up the good work. We're here for ya, bud!

[ConGregation]

Still praying. Let God be strong for you.

[MrDuke]

Thanks Gooter!!

Heh,heh...I've been waiting for you to post just so I could say "Gooter" again...heh,heh. My wife and I still crack up over that.

 

Gooter...LOL!!! It's like saying "booger". All you can do is laugh!!!

 

OK...update time!!

 

The oncologist called and we found out Danielle is in remission!! THAT ROCKS!!!

Remission is not the same as "cured", though. Right now, with the best technology they have, they cannot detect any cancer cells in the marrow. However, they know there are still cancer cells in her body somewhere so the treatments will continue.

So the perspective changes to focusing on surviving the chemo, staying germ free while the chemo beats down her immune system, and praying we don't hear the word "relapse".

A relapse is a proliferation of any remaining cancer cells which don't respond to the chemo drugs.

Sounds pretty cut and dry...we'll take it a day at a time.

 

We went to a Christmas party thrown for all the children with cancer. It was very uplifting and was the first time we've been out as a family in a very long time. It felt good to get out and be "normal". I met more families in the same situation as we are in, but a few months further out.

I'm still working on the anger and rage management. I chatted up other dad's and I was told it can last a few days up to 7 months. But it becomes manageable...we'll see.

 

Anyway, that's all I've got for now. You guys keep me going! Thanks!!!

 

MrDuke

[auggybendoggy]

Duke thats great news!!!!! Praise the lord man!

 

Auggy

[MrDuke]

Another update:

 

Danielle needed a blood transfusion so it turned her treatment day into a 9 hour visit.

The new chemo is creating a few sores and blisters in her mouth. Think about eating hot sauce and getting a sore, inflamed taste bud because of it.

 

Her appetite is decreasing and her hair continues to fall out...BUT her personality is coming back and she's laughing and giggling more and more. Overall, that's a good thing and I'll take it.

 

I don't know if we'll post pictures of her without hair. On one hand, I know she'll never remember losing it and she's the one going through all this so I should post it. On the other hand, it really upsets me and my wife because it's a reality check. She'll really look like a bald cancer child. Up till now, she's always been my regular princess going through a hard time. Now she's my daughter who's fighting cancer. I'd rather look at the old pictures where she looks normal. It's really conflicting.

 

On a different note, I FINALLY designed and created a drug formula that allows children to take dexamethasone (or anything extremely bitter) without tasting the bitter aftertaste. It may not seem like a big deal until you, as a parent, have to hold their head still and end up wearing the medicine.

My intention is to file for FDA approval and bring it to market it (with almost all proceeds going to St. Judes research and development).

I have a chemical engineer working with me on the stability issues but I could use some legal assistance.

Do we have any legal begals out there with experience in dealing with the FDA?

 

That's all for now.

 

Thanks again, guys. I know I couldn'tve gotten through this without this forum and your posts.

 

MrDuke

Edited January 21, 2005 by mrduke

[Playaa]

you're still in our prayers at my church.

that's awesome about the drug thing man...keep following with that for sure.

[MrDuke]

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.

[ConGregation]

wow. the treatment lasts that long? Three years?

 

Still praying.