Now back when I was a kid...

That's right... I said it... back when I was a kid.

So the nightmare on our street (that is Halloween) is finally over. I don't know if I've blogged about this in the past... if I have and you remember... tough.

We lay to rest another Halloween freak show on our street. To understand where I'm coming from is to experience it. I can assure any and all of you reading this post that you have NEVER experienced Halloween like this. I am of the mind set that it's gotten worse as the years have gone on... worse in the sense that it's become more and more crowded.

This is where I show my crankiness and sound like an old codger... maybe I am one... maybe I'm not. MAYBE I'm on my way to codgerness.

I can remember back when I used to trick or treat... back when there were not hours set for trick or treating... I can remember one instance where I came home and emptied my "bag" and went back out! Way back when you were worried about getting a razor blade in an apple. HA! You can't afford to hand out apples these days and honestly, who has THAT kind of time to insert razor blades into apples. I will take it one step further... for us here to hand out apples... as in one apple per trick or treater... I would literally have to have an apple orchard in my backyard. More on that in a bit.

Now I enjoy candy (not as much as I used to) but my tastes have become somewhat more sophisticated... or snobbish perhaps. In any event, never in my life was it, nor will it, become one of the food groups in my diet... that's reserved for Coke. I find myself wondering where the caring has gone. What I mean by that is when did it become common to just throw on everyday clothes, grab your pillow case and expect candy... expect candy without saying the magic words... Trick or Treat. I really hate that. At the same time, you don't want to make a big deal about it for fear that there'd be some type of retaliation to your property. Again... showing my age a bit.

Julie and I have instilled in our kids that you HAVE to say trick or treat and thank-you... if you don't you will hear it from us... okay... mostly me. They also have to dress in something that they wouldn't be seen dead in on any other day. In other words a legit costume.

If you couple the laziness factor (those who don't "dress") with the sheer mass of candy seekers... it really dampens the old Halloween spirit. Get it? Spirit... Halloween?

It's become so much of a hassle to fight our way though the crowed sidewalks over recent years that we've taken to leaving our street so the kids don't get trampled... this year being no exception. We usually hit our immediate neighbors before Julie packs 'em in the truck and drives them out of harms way to an area several blocks away from the chaotic amusement park atmosphere. Emmah did not dress this year, so I stayed home and was to hand out candy.

Earlier in the day Julie was running a few errands and she decided to stop and get a bag of candy to hand out. Consider our past week when you wonder why we're buying candy ON Halloween. Now our usual modus operandi is we go out with the kids and then when done, we come home to hand out candy. So after hitting out immediate neighbors Julie pulled away and I went in, it was 4:15. Our trick or treating hours were 3:30 to 6:00. I decided that based on the amount of candy we had I would go out around 5... I honestly (and seriously) thought about going out later than that. Julie purchased a 5 1/3 pound bag of candy... a "cheap bag" at nine something dollars. We also added to that some candy that the kids decided that they didn't like/want that they collected from a parade that came down our street earlier in fall that they (the parade people) were tossing. In all it was a bowl with more than six pounds of candy.

I can't rightly say how many pieces were in that bowl, but it was a really big bowl... 13 quarts to be exact... and it was filled to the top. Not "overflowing" but full. 13 quarts of candy should go a fairly long way... right?

Wrong...

Now mind you I contemplated going out closer to 5:30 than 5:00. Against my better judgment I did go out at 5.

By 5:15 I was out!

For those "keeping score at home" that's 6+ pounds of candy gone in fifteen minutes... ONE PIECE AT A TIME! If I were to extrapolate that out (and who doesn't love to extrapolate?) to the two and half hours of trick or treating... we'd have to have something like 72 pounds of candy!

And my arm would be in a sling...

Why so many candy seekers... and there are lazy seekers. A couple reasons I suppose. One... our neighborhood. Two... the haunted yard that our neighbor sets up every year. We (those of us veterans that live on this street) don't hand out candy via the door... it's just easier to set up shop outside of the house in a chair and a conveyor belt.

Oh well... until next years "event"

Happy Halloween

Home at last, home at last...

thank God almighty we are home at last. With no disrespect to MLK... we are home.

Emmah's home and feeling better than when we went in on Monday... just a wee bit tired and wanting to catch up on some ZZZZs.

Little victories... little victories.

Movin' on from here.

KEIYTAP

And we're back...

To be fair I guess one would have to actually leave in order to be back... but in the empty ghost town of a cavity I call my head, I was already packed, one step out the door and gone as we discussed our discharge.

So as fate... God... or whatever other external force is "imposing" its will and having its way with us, we are still here.

Waaa Hooo...

Emmah had been on a 24/7 every three hours Dilaudid infusion to help with the mouth pain. Since all the cultures had come back negative and the H1N1 was negative and the x-rays looked normal and she's been without fever since Monday afternoon, there was no clinical reason to keep her here. The overall consensus/diagnosis is that the pain and the redness in her mouth/gums is a "bruise".

The only real concern now was pain management and her WBC. They decided to stop the infused Dilaudid.

Her mouth, in her own words, was tolerable. Then as if on cue, her side started hurting. They still wanted to get her off the Dilaudid via IV and wanted her to take it P.O. In doctor lingo P.O. means by mouth. I don't get how they get P.O. to mean by mouth. So logically (as I started to think about this) one would think By Mouth... BM... hmmm... oh... that's no good BM already has a meaning. I still don't know though how P.O. stands for by mouth.

Hold on a sec, let's get to the bottom of this (this is the educational part here) P.O. = Per Os or as stated by dictionary.com Per Os = By way of the mouth, as in the administration of medication. There we have it... now we all know.

Anyway, they've started her on Dilaudid P.O. and it seems to be working enough. In addition to the Dilaudid, she's going to have to take an antibiotic... P.O. ... which isn't exactly thrilling her.

Then something weird happened... a piece of gum... as in gum tissue came out of her mouth. I know... eeew. They looked at the void it left... it was a small piece of tissue, but as you might suspect one doesn't expect things like gum tissue coming free. At any rate, the doctor looked at her mouth and said that it looks "fine". Emmah's a little freaked out, but I'm hoping to get out of here tomorrow.

Only tomorrow will tell.

KEIYTAP

Up Down...

And we're still around.

Still at the hospital.

I'm going to advocate for getting out of here, but we shall see how that goes. I have a roommate that doesn't seem all that interested in going home. So it's going to be a double "sell job".

She got blood yesterday and platelets this morning. Her WBC (after sitting at .2 for a while) went up to .4 and then back down to .2 yesterday... today it's back to .4. Hopefully this is the real deal and it's on the rise... for real.

I'm getting a little tired of watching Disney Channel... Hannah Montana and I Carly... and the like. I'd also like to reiterate something here... contrary to popular belief, I CAN'T sit on me bottom all day long it doth protest.

So biding my time is how I'm spending my time and wondering why it is that Emmah is resistant to leave... or even hint that she wants to leave. I think that at some level she rather likes being "doped" up and being waited on hand and foot and having the TV basically to herself and no fighting crying arguing whining siblings to have to contend with.

While I can't say with certainty how her mouth feels... it is her mouth after all... I am having a difficult time believing that the pain that she's experiencing is unchanged since Monday. The caption doesn't match the picture exactly. The only thing I have to go on regarding mouth pain is a cavity or tooth being sensitive or an abscess. They always ask to give a pain rating on a 1-10 scale... 10 being the most intense. When her Dilaudid (pain med) starts to wear off... her rating is 6-7-8... when it's working... it's more like a 2. Again... I find it difficult to believe that there's been no change.

This just in... I may not have to advocate for anything... they might be sending us home. Time will tell... I'll keep ya posted.

KEIYTAP

Not to be lost nor forgotten...

Like the title sez... not to be lost nor forgotten on all the rigmarole that has transpired these past two days is Ana's birthday.

She turned 3 already yesterday...

HAPPY BIRTHDAY ANA!

We'll be home soon... maybe.

Day 2 of 3?

Okay, so it's almost 24 hours since I last got on and there's not too much to report.

Her cultures (to this point) are negative. Her H1N1 swab test result... negative.

Her temperature today has been ranging 36.4 to 37.7... again for us lay Fahrenheit people that 97.5 to 99.8.

The x-rays that they took yesterday weren't exactly what they were looking for and so today they wanted to take more except this time just the mandible instead of the whole head.

X-rays negative too.

Her WBC doubled... don't get too excited though it went from .2 to .4... but at least it's on the rise.

So the only perplexing thing is the mouth being sore. Their thinking is that it's bruising but no one can say for sure. In any event, it's weird.

There's talk that we will get to go home tomorrow, but I'm not holding my breath since I've heard it before. I will believe it when I'm signing papers allowing us to go and am in the truck.

That's about it from here... for now.

KEIYTAP

Unexpected "vacation"

That screeching sound you hear is our life stopping and changing course yet again.

It's nothing that we haven't experienced before... one day/moment things are fine and the next it's a 180 and we're left wondering how does this happen so quickly?

Yesterday late morning and early afternoon Emmah was laughing and goofing around with Nick... hmmm... should've known right then that there was something wrong. Anyway, she was actually running... that's right running... running and laughing. Then after lunch sometime she started to complain that her mouth was hurting. Then there was the business of a fever that cropped up... not good. As of this morning that fever was a gaudy 102.9... 102.3 right before coming in.

So here we sit... me in my camping chair Emmah on the bed. I started bring my camping chair because it's more comfortable than the chairs they have here and if I'm going to be sitting all day long, I may as well be as comfortable as possible.

She's getting fluids and an antibiotic... they've sent off cultures and labs and it's suspected that she will be in need of platelets. What remains to be seen is if we're spending the night or not.

It's now 9:25pm and I'm getting back to finishing this which I started this morning.

This just in... we're "trapped" in the hospital.

We were given the choice to go home... I tried to reason with Emmah, but she didn't want to go home and so here I/we sit.

Now that we are here, we are "stuck" for a 48ish hour minimum stay until the cultures have their chance to incubate and see if anything crops up. When we arrived at our room, her fever had gone, but as of last measurement, she was 37.6 that 99.6 for us lay people. So it's not normal... then again it's not 102.9 either.

We're getting the "full package" deal while we're here... all the bells and all the wires.

There's a twist to our story here. We received word today that someone in Lydsey's preschool class tested positive for H1N1.

We don't believe that Emmah has H1N1, nor do we think that anyone has it... but as a precautionary measure they are going to check Emmah for it and do a full viral panel and start her on Tamiflu... all precautionary of course. Emmah got the swab jammed up her nose and I think that I saw it pop out of her ear. We till wait and see what that shows... I suspect nothing, but we will know soon enough. If it comes back negative for H1N1, then they will stop the Tamiflu.

Night

KEIYTAP

Something other than hospital trips...

In the interest of posting something that's not all doom and gloom (I guess most of it is not so much been doom as gloom) I've got to catch up on a few "fun" things that we've managed to do this year in spite of the bad news we received regarding Emmah. I also must point out that our definition of fun is somewhat tempered by our situation.

So before anyone gets on me to finish writing about the Make-A-Wish trip... you probably forgot about that one... I will get around to it. I'm writing about our trips to Williamsburg and our most recent trip to the tourist trap that is Ohio and how they're connected.

First Williamsburg -

This past May was the band trip... originally it was scheduled for Myrtle Beach, but due to the wildfires at that time, they thought it best to rethink it. I would also like to add that there was also a band competition involved in this trip. So it was business and pleasure for the kids. The rethinking made them think that Myrtle Beach was off the menu. I don't know what led them to make the decision they made by going to Williamsburg, but that's where they ended up going. I find it interesting that they managed to find a competition out there too... perhaps it was just moved. Of course I'm not too immersed in the world of Jr. High band competitions, so for all I know there could be one going on right now.

They did very well and took 1st over all and either 1st or 2nd in everything else and ended up coming home with several trophies.

We were at that time trying to harvest stem cells out of Emmah... you may or may not remember from previous postings. At any rate because of that (the attempts at getting her harvest worthy) there were many transfusions... blood and platelets... seemingly like every other day. Emmah's body decided that it wasn't going to sit still for it and protested by "hiving up".

Since early on in treatment, Emmah had been pre-medicated before receiving blood products and this was no exception, but in spite of the medications, she still hived up... pretty severely, but not life threatening... nothing anaphylactic. Still we didn't like the idea of her traveling on the bus and being 900+ miles away from us, so we loaded up and decided to take the clan camping simply so that we'd be there if anything cropped up... and ensuring that since we were there, nothing WOULD happen.

They (the doctors) knew that she was going on this band trip and so they prescribed Prednisone for Emmah to help with the hive outbreaks. Now to be clear, she was hiving up after the transfusions had stopped... like she hadn't had a transfusion for a couple of days and she's still hiving up. All anyone dared to guess was that it was in fact the transfusions causing this reaction. So it was Prednisone and Benadryl to handle the hives.

In typical family style, we weren't packed and/or ready to go when they were going... they being the band. See our intent was to just tail the buses out there then we'd never be more than minutes away. In reality... we were just minutes away... A LOT of minutes... so much in fact, they have another name for that many minutes... it's called an hour or in our case hours. We had beforehand secured all the cell phone numbers and gave them ours to ensure that we'd be able to make contact with each other. So as darkness fell and we were in the final stages of loading up, we got a phone call from Emmah saying that the hives flared up.

I'd like to add at this time that during the process of our harvest attempt, there was administered a high dose of chemotherapy that was causing her hair to fall out again. Like the previous time that she lost her hair, she was kind of in denial and thus not wanting to get it cut short in an attempt to make it less traumatic, but rather she let the hairs fall as they may... and they did. Finally on the day of departure, she came to her senses and allowed me to buzz her up. This made her head look like a patchy, fuzzy, pasty white orb with red spots/splotches... the Prednisone adding to the orb-ness. I realize that this isn't exactly a Monet image and more of a Picasso, but that's the way it was for her.

So the call comes in... it's Emmah and the hives are acting up again and the Benadryl stopped/isn't working and she can't take any for a while. We're unsettled to be getting the call, but even more unsettling was the fact that they were calling from Fort Wayne, IN… that meant that we were a good 4 hours behind.

Yippee!

After a call to the doc on call and that doc returning a call to Emmah, it was decided that there wasn't any need for any emergency action... like calling an ambulance or taking her anywhere... since there wasn't anything anaphylactic going on. It was about this time that we contemplated/discussed her taking a half dose of the Benadryl every three hours instead of a full one every six. This allows for a more even delivery of Benadryl than the spikes and falls that she was getting with the full dose. At the time of the call, we were in fact minutes away from getting on the road and once things were talked through and settled, we did in fact get rolling.

Now we knew that we were going to be driving through the night... not a highly recommended practice and getting harder as I get older... or perhaps it has more to do with the lack of sleep that always precedes us leaving for a trip. What it ended up being this time was a few stops at a few rest stops along the way to try and take the edge off and enable me to continue and push on til morning light. After a long night of driving, day broke... thank goodness... and we continued on our way knowing that with each stop, we were getting further and further behind them. Then there was the day that it took to get through the DC area.

Ever driven in and or around the DC area?

In a word DON'T! Maybe it's just me, but each and every time driving there is a nightmare. I mean the absolute worst driving (or more specifically non-driving) I have ever experienced... EVER! We finally arrived at the campground, but we were (as is typical with us) under the gun. Daylight was fading and we also needed to get more Benadryl to Emmah.

We got the tent set up enough and headed out to get across town to get to Emmah who was at dinner following their performance... so she was in uniform... a wool uniform... a hot wool uniform. When we got there and she came out, she looked miserable. She looked like a hot strawberry... red with patches of red and compounding the problem is that for that time of the year it was unseasonable warm and humid.

The next day they were going to Busch Gardens and we were still concerned as to the control of her hives. They had extra tickets to Busch Gardens and offered tickets to come to the amusement park... not that we would tail Emmah, but the thought was that we'd be at/in the park should anything arise. We arrived at the motel that they were staying at and Emmah looked great so we decided that there was no need for us to go, but they told us to keep the tickets just the same... since (and I think) they were donated? Emmah went to Busch Gardens and we went back to the campground deciding that we'd keep checking in on her via the phone.

We hung around the campground riding the banana bikes that they had and the kids went swimming and played on the big bouncing pillow. Emmah's day proved to be uneventful and she had a good time. As the weekend was drawing to a close and we readied ourselves for the long return trip, it was decided that Emmah would in fact ride home with us instead of the bus. So that's what we did.

By now you might be saying to yourself (or perhaps not) what does ANY of this have to do with Ohio other than we passed through it?

Remember those passes to Busch Gardens that they said that we could keep? They didn't/don't expire until November. We contemplated making a return trip when Emmah was done with treatment mostly because since her platelets were still low for this trip. They (they being the doctors) don't approve of her going on any rides that would be jarring... there's no need for any kind of internal bleeding or anything like that, so she spent her day there not doing much of anything other than hanging with her friends and watching them. So we promised her and the kids that we'd use those passes and come back out in the fall before they expired.

So it's the fall... and we "owe" a trip. So we started planning a return trip to Williamsburg. The more we planned and thought through it, the more it was shaping up to be another "stressful" trip. Stressful in that a lot of driving would have to be done and things would have to be packed in in order to make the most of our time there. The more we laid things out, the more it was looking like the trip wouldn't be all that "fun".

First there's the business of driving. I didn't want to make it a one day drive again, so we started talking about two days out and two days back. So right there there's 4 days of driving. We were leaving on the 6th and getting home on the 12th... that was the plan. So 2/3 of the time away was shaping up to be spent driving.

Hmmm...

Then there was the business of the passes to Busch Gardens... a ONE-DAY pass to Busch Gardens. So we'd go and most of the kids would be too small to ride the majority of the rides anyway. Then Julie and I aren't in the best of shape (both us have had some back "issues") thus rendering us less than optimal candidates to be riding the rides. So that of course leaves Emmah and Nick to rely on each other to go on the bigger rides. Well... what if one doesn't want to go on a ride... then what? Ask someone? "Hey Mac... you wanna ride this ride with my kid?"

I don't think so.

So let's see... 4 days driving... one day in the park. Hmmm, that still leaves a day to fill... and gee really only leaving Colonial Williamsburg to walk around. We just didn't see the kids being all enthused about walking around Colonial Williamsburg. It was mutually agreed upon (upon further discussion) that this wasn't looking like the best choice.

In the end, we decided that maybe going all that distance wasn't the best idea after all especially if what we were looking for was good quality family time. Something in the 5 to 6ish hour range of driving would be more ideal. Our thinking was such that we'd still have the rest of the day (after arrival) to do something. Yeah... right... this is us we're talking about... we never leave on time and we always (especially on trips) run behind.

But what to do and where to go?

We had been (previously) given a monetary donation by a friend (who to this day remains anonymous... thanks again anonymous friend) and we used it to put towards a family membership to the Museum of Science and Industry. The membership level that we purchased also gives us entry to other museums around the country as members and/or with membership perks. There are museums all over that participate in this program.

I don't rightly remember how the "plan" came to fruition, but we ended up looking at the Columbus Zoo. Then that spurred the idea in Julie to check and see if any museums were on the list of participants out that way. Ultimately we ended up planning a trip to Ohio to visit Boonshoft Children's Museum and the Columbus Zoo with a trip to an apple orchard/pumpkin farm on the return trip home.

So we camped at a KOA in Brookville, OH for the week making the trek... an almost 90 mile trek... to Columbus three times. I know, why didn't we find/stay someplace closer? Well, Boonshoft is in Dayton which is really close to Brookville... like 12 miles or so and the KOA we were staying really was the most convenient. We planned two days for the zoo and two days for the museum. What we didn't know was there was a really cool museum in Columbus the COSI museum (Center of Science and Industry for long). They were also a member... thus adding a trip to Columbus. It really was a cool museum... they both were.

As for the zoo, we ended up getting a family membership (good for one year) because when everything was added up for one day passes, it was only ten dollars less than the family membership... at least the level of membership we were looking at. So now we can go back any time we want... it's just 5 hours away.

We worked around the weather and Emmah's condition (never did make to the apple orchard... we figured that they weren't going to have a wheelchair to "rent" for Emmah to get around) and managed to have a "good time" in spite of Emmah being in pain and Julie flipping out whenever Emmah would wince and then Emmah getting upset that she was upsetting Julie and...

Then there was also the knowing that when we got back that we'd be heading on in to "start something" for Emmah.

So you see, there really was a connection.

I don't know how ambitious I will be in the coming days with potential hospital trips and trying to tie up some loose ends on the house before winter setting in, but (and I am making no promises here) I will try and get a couple photo albums posted from the two trips. I will add them in this post.

As a side note here and totally unrelated; the water heater problem is a problem no more... installed the new one today. Gotta love having hot water...

KEIYTAP

How low can it go?

No really... how low CAN it go?

The home nurse came out to draw labs for Emmah and remove her port needle today. It had been in seven days... today being day seven. That's the rule of thumb... seven days. Now with the needle out she can at long last shower/bathe... if only she could stand long enough without tipping over because of a lack of hemoglobin!

I suspected that once the labs were run, that Emmah was going to be in need of a transfusion. I suspected right. Her platelets were at 16... not an all time low for her, but her hemoglobin was at 6.2 or 6.9 (like that .7 is going to make all the difference) and that... I think... is an all time low. Anyway, that would explain why she's been dizzy/lightheaded. Truth be told, we knew all along that her hemoglobin was low. She was at 8.5 after radiation (she still hadn't recovered from that when we started this round of chemo) and she wasn't going anywhere but down from there. So blood and platelets tomorrow bright and early.

Well at least after we get home tomorrow (from an exciting all day transfusion fest at the SPA) she can then take the long awaited shower.

Oh wait... no she can't.

Why's that you ask? (even if you didn't)

I don't think that she will be too hip on taking a cold shower. Why cold? Cuz the water heater decided (yesterday) that it had had enough and it was time to retire. It handed in its 2 minute notice by springing some leaks out the top. It must've been upset... for it was weeping.

KEIYTAP

Slogging on...

So yesterday marked the end of Emmah's chemo... for the week. She will be on a one week on two weeks off kind of schedule. That is assuming that her counts recover in time to start the next round. That's also assuming that the chemo she's taking is doing/does something... I mean let's face it we're not giving chemo just to give chemo.

Once again, we have the knowns. Still... it's the unknowns that are slowly, steadily and surely grinding and wearing us down. We know that the CT showed multiple (3) tumors. We also now have the MIBG scan results and those results match up with what the CT showed. In other words, no surprises. We are thankful once again that there is no bone, or bone marrow involvement and that the only involvement is limited to the tumors themselves.

I'd rather there be no involvement at all!

For me, the hardest part isn't the fight itself... per se... it's the not knowing the answer to said fight. It's the not knowing the final outcome. I consider myself to be modestly "intelligent" but this is one answer that I just don't have and can't even begin to guess or predict. It's like predicting how old you will live... you just don't know until that day happens. I guess the irony in that is... when THAT day comes, the only ones that know will be the ones you leave behind.

So going forward the plan is to not scan Emmah to death but to keep an eye on her symptoms and keep tabs that way. She seems to be doing worse, then we need to change things up a bit. She seems to be doing better... then at least for the moment... stay the course. We will know things soon enough should she get on that trial... she will have to have a full work up prior to starting.

She doesn't seem to be relying on the pain med as much... hopefully that's a good sign.

I don't know if we need a miracle or not, but I'm not against asking for one at this point.

I surely would take one...

KEIYTAP

Spinning out of control... in reality.

You know... sometimes things look great from the outside, but then when you open the door and peek inside it leaves you with a totally different look/feeling. Sometimes that alters everything and sends you sliding mercilessly around like you're on a sheet of ice that's smooth as glass. Hoping and praying that you will stop your sliding without too big of a crash, or that it (the crash) won't hurt too much. Sometimes all you're left with is a swift kick to the crotch (or gut if you ladies prefer) and you're left to carry on in agony hoping that the pain subsides enough enabling you TO carry on.

This is where I/we find myself/ourselves... with the kick to the crotch.

It sucks when you're left with more questions than answers.

It sucks when the apprehensively guarded happy feeling you were experiencing in July turns into "oh no... here we go again".

Emmah has more tumors... (as shown by the CT she got on the 5th)

We went from no evidence of measurable disease (precluding her from the trial/study) to three masses... one being 10cm... in the span of two and a half months. They (the tumors) thumbed their "noses" and grew during (and in spite of) radiation... and they were in the radiation field!

I would saddle myself (1000x over) with the burden that Emmah is forced to carry if I could... but I can't... and that's the hardest/worst/most unfair part of it all. To sit and watch and know that there isn't a damn thing I can do about it other than make decisions on what to do next. That and try to comfort her as best I can.

I'll uh... I'll post more later filling in some the details. I just wanted to let my readership (the faithful few) know that Emmah's back in ring for another round against this heinously repulsive disease.

As always...

KEIYTAP