Does time REALLY heal?

In a word... NO!

Time does nothing to heal.

It does't fill the void,

nor does it repair a shattered heart.

Most of all, it does nothing to bring back all that we have lost.

Why then do we say that time heals all wounds since the reality is, it seems, that it does NONE of those things? All it really does is dulls the initial inrush of pain and then forces you into getting on with your life. Of course we tell ourselves that "this is how Emmah would have wanted it to be"... perhaps, but I think that if Emmah was given a chance to make it how she wanted it to be, it wouldn't include succumbing to the wretched disease that took her from us way too early.

As we move further away from the moment that Emmah was set free, we're left to sort through our own emotions. I suspect that the most asked question would be why. It's not for us to answer I guess. We're left behind to cope and move on.

In helping to do just that, there will be a prayer service @ 7pm the night of the spaghetti dinner. There will be a slideshow, scripture and time for anyone wanting to share memories/thoughts about Emmah. (I will include the particulars of the dinner again... it will take place on the 26th, so next Friday. The dinner will be held from 4:00 - 7:00 p.m. Tickets are $8/adult over 12 and $5/child 12 and under and children under 3 are free... 805 Western Ave, Joliet... 815-727-9259 also if you are on Facebook, you can visit Angels for Emmah)

In addition to this, there will also be a celebration of life being held on her birthday... March 10th... it will be held at Hufford, her junior high starting at 6pm.

Lastly, there will be one last celebration of life, but that won't be until the fall around labor day and that will be held at one of her favorite places up in Delevan, Wisconsin where we plan on making a memorial garden and planting a tree in her honor. Details will be forthcoming as we get closer to that time of the year.

KEIYH

She Is Free

Heaven has the most beautiful angel of angels among them now... watch over us Emmah and give us the courage and strength to carry on. Our hearts are heavy and aching, but you are free, free from your earthly constraints... free and happy as you should be... as you deserve to be.

Fly away my precious butterfly... come visit our garden often... we will be waiting for you.

KEIYH

Happy Birthday!!!!!

Happy Birthday
LYNDSEY!!!!!!

How many fingers you ask? Why her whole hand now... and for the record, she has five digits on her hand.

Walking the dark path

I've been struggling with what to write and what to post and how to say it and all of that. This started out as a response to an email to a friend and I realized that THIS is actually going to be the post. So Steve... here is my response.

I would also like to add as a side note and something totally unrelated (other than if you make the connection of shitty bad luck) Julie got in an accident in the van on the way back to the hospital Wednesday after dropping off the kids... someone hit her. She's fine... the van is drivable to an extent, but is damaged and it's so old that I'm not sure what we're going to do. We NEED a second vehicle, so while trying to figure this all out here, we need to figure out what to do with that. Sorry, that was more of a vent than anything.

Okay so on to the letter.

Yes, I did in fact spend my birthday in the hospital. Things have been better.

While Julie and I have never been delusional as we've made the battle with Emmah, we've always clung to hope... hope and optimism. Those two motivators are running in very short supply... optimism has basically disappeared, and hope is running pretty close in its (optimism's) wake. We've had two, and I will call them "pre-talks"... we've had two "pre-talks" to the talk. The handwriting is on the wall. It seems we're going to lose her. I can't even begin to imagine my life without her in it. I have mixed feelings since when it finally comes to pass...

It's hard to type through the tears...

In my heart, I want her here, but I want MY Emmah, not some scaled down version. Now what it really comes down to is how do we want it to end? How far and what measures do we want to pursue and what is worth pursuing? They talked about figuring out how to get her home by perhaps sending her to a transitional hospice with the goal to get her home.

After some discussion with Julie, I said that I didn't want her home... it would be too painful of a reminder. I said that unless she gets up gets herself dressed, packs her bags and sez, "Let's go home Daddy" I don't want to bring her home. Seeing her in the family room in whatever condition that she would be in would haunt me. I said that if we stay here... that when THAT time comes, I can walk away from here and NEVER EVER look back. I don't come to this part of town, and I have no reason to ever come here again... I could walk away and close the door. Cue the sunset, fade to black, roll the credits and the end.

I don't suspect that I will be getting out of here any other way than alone. Unless some miracle happens, nothing's going to change that.

When THAT day comes... it will be such a relief of such a burden. For the first time in nearly 4 years we won't have to have that cancer cloud hanging over our heads. I said to Julie, how far do we take this? I mean it seems a foregone conclusion that she's not going to make it, and IF by some miracle any interventions should even help her to hang on a little longer, I feel like it's only prolonging the agony.

I said what if it buys her another two years... sounds good in theory, but in two years we will find ourselves right back at this place and I can't go through this again... there is no way in hell I will make it. I've already started the process of coming to terms with this. I hoped and prayed... I begged God to take me instead... I pleaded with him and we still end up here.

I told Emmah the other night that "she doesn't have to fight for us anymore, that if she want's to fight that it be for her... we will be here for you and whatever you want us to do, we will do, but you don't have to fight for me and mommy." She nodded. I asked her the following morning if she remembers what I said to her last night, she said yes. I asked her if she's scared... yes. I said we're scared too sweetie. I then asked her if she wanted to take her meds today... she weakly nodded her head yes.

That's my girl... daddy's little girl... a true warrior!

Damn it... tears again...

The Emmah that touched so many lives in her short time here seems to be leaving us (her brain wants to fight, but her body is betraying her) and depending on your beliefs of what awaits for us after leaving our physical existence here... she is off to a much better place. I struggle being in this situation, because it most certainly doesn't do anything to help me believe in the existence of God. I think how can THIS be his plan for Emmah and us? This is the most cruel punishment you could ever imagine... the physical and mental anguish that goes along with this is unimaginable. The atrocities of Hitler look pretty mild compared to this. Please understand that I in no way mean to diminish the severity of what Hitler did... it's just suffering in this way, the way that we are, takes torture to a new level.

She is not at death's door... not today anyway, but we seemingly are circling looking for a place to park. It's just a matter of time before we find a space. I don't want to give up, but there comes a time that you have to say we did all that we could but just got beat by a cancer that is voracious and unrelenting. I'm struggling...

The reality is that not one of us gets out of this (existence) alive... no one! We all will die someday. Another reality is that we start dying... and I used to say birth... but I've changed my mind... from the point of conception. That is when it all begins. From that moment on, we start growing into what we know as a person... a baby, toddler, child, pre-teen, teen, adult and then... well the end. I mean that's supposed to be the natural progression... that we make to adulthood and with any luck live to a ripe old age of 100 or so. Children are not supposed to predecease their parents... it's wrong on so many levels.

I want nothing more than for Emmah to be at peace, but if that can't be achieved here... on this planet with us, then she needs to go where ever that peace is. I really really really wish that was still here with us, but it's not looking that will be the case. Things could certainly improve... they could... I mean that's that shred of a shred of hope that I cling to... but it's just that... a shred of a shred. It's like trying to hold water in your hand... though you feel it wet and hot or cold and though try as you might, you just can't get a grip and hold on... it just runs through your fingers.

We don't rightly know when THAT day will come... we kind of hope that she makes it to her 14th birthday, but who can say. We've been chasing fires now and are juggling more and more with her. She's tired all the time and I know that they're saying that it's due to the Methadone... and it very well might be... but then what? She's in pain again?

I don't want to see her go... she's my baby... but if this has become her fate, I'd much rather see it happen quickly.

The hospital has put a butterfly on our door... I only know this because it's at my eye level. I have been witnessing something going on down the hall... a few rooms down. I see A LOT of people hanging around outside the door, I've seen the priest. I may not be the sharpest tool in the shed, but even I can see what's going on. I noticed that there was a butterfly on THAT door as well. Made me sad to see one on ours. Julie inquired about it asking if it means like someone dying... she was told that they put it on there to signal the staff to be aware of the situation and to not just barge in. It doesn't mean death/dying.

I guess it just means that we're looking for a spot to park.

KEIYTAP... KEIYH (Keep Emmah In Your Heart)

Hospital log day - 37

Holy crap... 37 days in the hospital and no real end in sight.

OR day three of the trial...

It's good to know that Emmah can prove to be such a puzzle. First we had the how to get Emmah out of pain challenge, and that one stumped A LOT of people. We kept on going up and up and up on the pain meds while all the while there was no significant sense of relief... hell, there was none. I realize that there's been a lot of time spent and many conversations regarding how to best help Emmah. It seemed that we reached some kind of threshold... I guess that was when she started to go regularly over 1,000mg of opioids/narcotics per 24hrs. To be fair, they had discussed (in passing) the epidural before. So the epidural went in... and didn't provide any relief. Once again leaving everyone scratching their heads and saying "this should've worked".

Days passed and still no real relief was to be had. Then suddenly, as if by magic, she stopped using her PCA. That's the device that allows Emmah to self medicate herself by hitting a button. Anyway, she just quit cold turkey. All she had on board then what ever was happening with the epidural and the 300mg/day of Methadone. And then just like that she goes into the drug stupor... almost a comatose like state.

Too much Methadone is what was determined to be the culprit...

Ahhh, but Methatdone can't be stopped cold turkey, she needs to be weaned.

Hmmm... let's do this this way;

• Problem one... pain management
• Problem two... kidney problem
• Problem three...
  

Actually... problem numero uno Neuroblastoma

• Problem three... getting her in a place to be able to start the trial
• Problem four... her stomach has become distended and she hasn't stooled in like a week.
• Problem five... her urine output is fairly diminished and what's coming out is rather dark.
• Problem six... Methadone ahoy!
• Problem seven... fever
• Problem eight... vomiting
• Problem nine... we're still friggin' here!

So it goes like this, fluids going in aren't matching what's coming out... and nobody seems to have a good answer where the extra is going. She is gaining some weight... and it's presumed to be water weight. There's talk of a NG tube to depressurize her stomach. They've talked about giving her something to block the effects of the narcotics on her intestinal tract... hope would be that it would wake up and get going again. Not sure on the fever, cultures have come back negative. Waiting to get her off the Methadone is a lesson in torture for sure. They think that the Methadone (and this is me saying this) has kicked in. I'm thinking really!?! She's higher than a kite. At this point, I don't care if she ends up in pain again if we stop the Methadone. I mean I don't want her to hurt, but I've never heard of anyone expiring due to pain. Drug complication... yes... pain no.

I'm ready for some smelling salts here... I mean for her, not me.

The kidneys continue to function in that the her levels are good... there just isn't enough urine coming out. Oh... and the kicker? The trial med can cause her to become sleepy!

I realize that this post hasn't been in my typical "style", but I'm really tired... mentally and physically.

Okay... switching gears a little. I'm going to post something here (it was requested kind of/suggested by the person/persons overseeing the operation) it's the who, what and where of a spaghetti dinner/fundraiser that is being held in Emmah's name on the 26th of February at First Presbyterian Church in Joliet.

So that's the who, what and where right there, but I will post what was written in the flyer here and is as follows...

Angels For Emmah

We would like to introduce you to a friend of ours, Emmah Gudeman. Emmah is an 8th grade girl who is full of so many wonderful things! She has a great sense of humor, is a tremendous big sister to 5 brothers and sisters and has the most beautiful smile you'd ever want to see.

Unfortunately, our friend Emmah has been diagnosed with Neuroblastoma. Neuroblastoma is a cancer that forms in your nerve tissue. It usually begins in the adrenal glands, which sit atop of your kidneys. She was first diagnosed back in 2006 and battled like a champion. The cancer went into remission in 2008 and has now come back to cause her great amounts of pain. To say the least, this cancer battle (which, by the way, Emmah calls her "quest") has caused a great amount of pain for the whole family. The pain of watching your child/sister suffer, the pain of trying to financially take care of all the bills as you watch them pile up, the pain of a parent who cannot be EVERYTHING to everyone who needs them...

All of Emmah's sibling have attended Kids Crossroads Christian Preschool. Our preschool family would like to take some of the pressure off of the Gudeman's and show our love for them as well. We will be hosting a spaghetti dinner/fundraiser on February 26th, 2010 at First Presbyterian Church in Joliet, Illinois to just that!

The dinner will be held from 4:00 - 7:00 p.m. Tickets are $8/adults over 12, $5/child 12 and under and children 3 and under are free. At the dinner we will also have a silent auction, a raffle and a bake sale to raise more funds. Silent auction will close at 6:30 and drawings will be held at 6:45. You will not need be present to win. We would like to get as many donations to make as much money as we can for this VERY needy family. Our prayer is that you can help us out with a donation for the silent auction, attending the dinner or just sending prayers for our Emmah!

God bless you!

"And God himself has commanded that we must not only love Him, but our Christian brothers and sisters too." 1 John 4:21

I would just like to reiterate that I'm posting this as it's written in the flyer... I didn't take any creative liberties. Well one... actually it was more of an edit. Sorry Patti but our last name only has one n.

Okay... this just in as I've been busy "slaving" away at posting this. The x-rays still show no signs of blockage, they are going to hold the Methadone for tonight and they are hearing bowel sounds. She's going to be getting some lasix to see what that does, and they've decided that they are going to try using Methylnaltrexone to help with waking up her bowels some more.

Well, I can see this post is kind of all over the place, it's just a testament as to where my head is...

KEIYTAP

Got a bad case of the sleepys

I apologize to all that have been following. I just don't feel like posting and I'm damn tired!

I can see from the increasing hit amount that the "people" want to know, so I will supply the "know" part.

Emmah is still sleepy, the general consensus is that it is the Methadone. I won't even begin to pretend to know how suddenly it's the Methadone taking her down... as they put it, it's the Methadone that's causing her to be so somnolent. It's not an overdose, but we are taking her down. Going from 300mg/day to 180mg/day... one 60mg dose every eight hours. Their hope is that tomorrow, they can get her to like 75mg every 12 hrs.

Her med was not without incident. She vomited after the 1st and 4th pill, but like yesterday, there was no evidence of any pill in her pink tub. I can't believe that we still another 5 daze to have to manage getting those pills down. Oh well, much like everything else so far... we take it one step, one day, one minute... one pill at a time.

KEIYTAP

One, Two, Three...

Blurp!

Damn!

Four and Five.

So she did indeed vomit after taking three. It was determined that she take the other two since there was no evidence of the pills in her pink tub. So I guess they're in... as of 2:50pm central standard time this is.

Now we need to figure out why she's been so sleepy this morning/all day.

They are going to be looking at her blood sugar and electrolyte levels and see how they are.

KEIYTAP

Hold on.... here we go!

After much delay and anguishing and frustration after frustration... delay after delay. We finally have "liftoff".

A pill is a bit of a misnomer... unless you say a pill five times.

So there was some vomiting last night, and apparently a fever. Labs drawn and cultures sent. The upside is it seems that finally the epidural is working... or something is. Perhaps it's all the prayers?!?! At any rate, she hasn't taken a hit off her PCA for approaching almost 24 hrs now... cold turkey.

She's also gotten some acupressure done (as have I) and we will be doing some acupuncture and electro stimulus on her tomorrow. One pill in and she has to go to the bathroom. Still have four more to go. Each and every one causes me great stress praying that they can all live harmoniously down there in her belly and go where they need to go and do what they're supposed to do, but first and foremost... stay down!

KEIYTAP and we will get (and keep) this on the run.