The Race Is On...

to see who wins the "what the hell" award. If you're an astute reader, you may have picked up on the stronger language. It is no longer the "what the hey" award... it's all going to hell.

Let me set the scene here for you...

Julie's at the store, kids are upstairs, Ana's napping and I'm cleaning out the kitchen sink and washing some dishes. The three older ones appear in the kitchen and I ask where are Rachael and Lyndsey?

"Upstairs."

I say, "They can't be left alone, someone needs to get them down, they can't be trusted."

Emmah and Nick tromp back up. Upon doing so, I hear some commotion going on and stupidly ask, "what's going on?" Emmah comes down and asks, "where are the (baby) wipes?" I naturally ask why, what do you need them for? "We need to wipe the poo off Nick's bed."

The WHAT off the what?!?

Seems Rachael "went" upstairs and apparently felt the urge to go "fishing". According to her... in her own words... she "wanted to see what it felt like" adding "it felt pretty good". She then proceeded (I think) to wipe her hand on Nick's bed. Bypassing completely the sink (as well as the need to wash her hands in said sink merely two feet away) en route to Nick's bed .

After chastising her, I asked why Nick's bed? Why didn't you wipe it on your bed?

Her answer... "then I'd have to clean my bed".

Oh what fun it is to be a parent...

Oh What Fun It Is To Be A Parent...

It's worth repeating... oh what fun it is to be a parent.

Not wanting to be outdone by Rachael or Lyndsey, Jakob throws his hat into the ring for the "what the hey" contest.

I'm sitting at the computer organizing photos from the Make-A-Wish trip and I hear the door to Jake and Rachael's room close... then open... then close once more. Jake often gets up to go to the bathroom somewhere around midnight. Anyway, I hear the door and think to myself... right on schedule. Strangely though, I don't hear him coming toward, or into, the bathroom... which incidentally is located right behind the office where I'm sitting, they share a wall. See he kinda sleepwalks and that will become obvious here in just a sec.

In the past, he's staggered into the bathroom and gone with the lid closed. One time, he just stood right in front of the sink and peed right there on the floor. (Nick peed IN the sink once) A couple times during this past week or so, he's actually made the trek downstairs to go in the downstairs bathroom. Ahhh... but tonight was to be different. Why leave the room at all?

I hear the door but I don't hear him behind me in the bathroom. Thinking that perhaps he's taking the really long way by going down the front stairs, I decide that it's time to stop what I'm doing and investigate. I make my way to the bedroom and open the door. He's standing there buck-naked, with a deer in the headlights look... I startled him when I opened the door, peeing directly into the dirty clothes hamper.

Hey, that's better the dresser drawer or the closet... just trying to put a positive spin on.

Might be wise to start sending Rachael to bed in rain gear... and for Jake's sake without scissors.

Ya Missed A Spot

Seems like Lyndsey felt the need to "even things out" a bit with regards to her hair. A little more off the front and some off the other side of the head.

Remember the "not me" ghost from the comic Family Circus? Well, "not me" resides quite comfortably here. We put the scissors away and "not me" took them back out last night.

"Who took the scissors out?"
"Not me."
"Not me."
"Not me."

This is when "I don't know" steps into the room and sez to "Not me", "I'll take it from here."

"How did they get out then?" "How did Lyndsey get them?"
"I don't know."
"I don't know."
"I don't know."

"Lyndsey... why did you cut your hair?"
"I don't know."

Sigh... I don't know either.

Just In Time For The Holidays...

So picture this, it's Sunday evening, things kind of winding down as we approach the bedtime hour. Thinking about having a few moments to yourself before having to turn in yourself.

Then it happens... you notice something is amiss with Lyndsey.

It's her hair and it looks like it's been cut and not as in the haircuts that she and Rachael just got Friday afternoon either.

No, this is looking like a homemade upgrade.

So after some light scolding for playing with the scissors followed by some light interrogation with us wondering where in the heck did she find the scissors, Lyndsey blurts out that Rachael cut her hair.

Hmmm... really? (had we known that Rachael was qualified, we could've saved some money)

"Oh Rachael!"

"Rachael, who cut Lyndsey's hair?"

"I don't know"

Book'er Danno... case closed.

A lot of crying ensued with face down and hands covering the face... I was half tempted to hand the scissors to Lyndsey and say here ya go, give Rachael a haircut. In fact I said aloud that maybe we should let Lyndsey cut your hair Rachael. To which Rachael replied, "Lyndsey's not old enough." Are you Rachael? "No" said through her hands and tears.

If we hadn't just paid money to get them cut we might have been picking up Rachael's hair off the floor right now.

At least there's a little time before family Christmas photos...

Every Now And Then...

12-01-07 (now)


12-01-06 (then)


I really don't think I can add much to the pictures here... they say everything that needs to be said.

The 12-01-06 pic is two days after her 10+ hour resection surgery in New York, she's minus a tube or two already. Seems a distant memory, fading into the seldom visited files of your brain, until seeing the picture... brings you right back.

KUIYTAP

What's That Sonny... Ya Gotta Speak In Muh Good Ear...

Since I can't say it loud, I'll just say it big...




Happy 4oth Birthday Julie, welcome to the club.

Follow That Setting Sun...

This will stand as the first chapter in Emmah’s MAW (Make-A-Wish) trip… there’s a lot to tell and a lot to remember and for me to sit and type everything out and have you read it all at once is going to be a bit over the top, so piece by piece it’s going to be. I won’t exactly know how many pieces until I get there.

Exactly… now how was the west won?

Why it was with a carload of kids and stuff… and stuff. Stuff that filled every single nook, niche and cranny inside the car, a fanny pack (a roof pack) and a hitch tray. It was almost comical, the truck looked like it had two abscesses, one on top and one coming off the back end. We stashed stuff anywhere and everywhere that didn’t interfere with the driver’s area, I mean we stashed stuff IN stuff. I knew of nothing that went on behind us, for all I knew the road was caving in after we rolled over it. My rear view mirror was a useless instrument; at least for what its intended purpose is, it pretty much ended up as the eye in the sky for all the back seat passengers. I honestly wondered if we’d have to weigh in at the stations along the way. At one of the stops for food (one of many… imagine that) we stopped at the place that has that clown with the big red shoes and the yellow jumper as the face of the company. The girl working the drive up said that we must be on vacation. I wonder what ever gave her that idea… can’t fool them… no sir.

Turns out the easiest way to fool these people, is to actually place your order.

A few thousand miles later (4985.7 to be exact), we are indeed back from Emmah’s Make-A-Wish trip having traveled through a total of 12 states. Illinois, Missouri, Kansas, Colorado, New Mexico, Arizona, California, Nevada, Utah, Wyoming, Nebraska, Iowa, and finally back into Illinois. New Mexico was a cheapie since we only took a short road to get to and from Four Corners. Nonetheless, our tires were rolling along New Mexico land and the money that exchanged hands to get into Four Corners was exchanged in New Mexico. A lot of the aforementioned states were seen in various states of darkness.

I realize that doesn’t exactly sound like a winning combination to tame the west… you’re right, it’s not. Makes it sound like we were sneaking across the country with all this darkness of night stuff. Truth being told we weren’t exactly inconspicuous or subtle with our arrivals or our departures, but it just wouldn’t be a Gudeman Family camping trip without setting up the tent (almost every single time) during the hours of the recently vanished sun. As if the image of the rolling circus (that would be us pulling in, disembarking and then setting up) wasn’t enough to grab the fellow campers’ attention… of course, you would have had to have some type of night vision to see us… Ana was always quick to oblige at getting their attention by announcing to the beautiful silence that she had in fact arrived too. Ana had back up, The Hungry Hound Gang singing their title track... What’s for dinner, I’m Hungry? It is their new smash follow up hit to three of their most popular songs, I’m Tired and I Gotta Go Potty and I’m Thirsty… all three have gone double platinum already. If that wasn’t enough to rankle the campers within earshot, then those people should be canonized. There were a couple of times we pulled in really late… not just late, or later but really late.

…we did all those other kind of lates too by the way.

The trip started out by us packing as most trips do even before embarking on something as small as just a weekender, though this was going to be no weekender. This was going to be the opposite of a weekender… it was going to be a weeker, a three weeker. Three weeks, eight people, half our house and one SUV. The weather started getting rough, the tiny ship was tossed, if not for the courage of Mom and Pop the mission would be a bust. After finally getting everything squirreled away including the kids (we had to pack them too) Julie and I plopped our well worn rears into our seats. Julie was to drive us as long as she could and I was going to take over then… meanwhile, as she was driving I was to nap. We steamed out of our alley 2 no 3 hours after the original departure time of 4pm.

See we had this idea (mine actually) that since we’ve been unsuccessful in every single other trip departure in getting out on time, we decided to change it up. Normally, we’d plan on leaving very early, say like 4am for example. Drive all day and then collapse that night at our destination… exhausted. Your day then was naturally shot being spent on the road. Sadly, in all of our other attempts to get out on time we never made them either. For those that really know us, I realize that isn’t a great shocker. So leaving hours and hours after your dream start time, um… puts you further and further behind schedule. This time was going to be different! I said let’s turn it around, we leave in the afternoon and drive all night and arrive at our destination before noon and still have most of the day left to enjoy. The kids should sleep most of the drive then too thus reducing the necessity for potty break stops.

All great in theory… it’s putting the great theory into practical use or practice that spoils the glory of a grand idea. So as I stated, we are all now rears down and buckled, ready to roll… let’s get this heap’o’stuff rolling down the alley. There was much rejoicing as we said see ya all later, spirits were high and kids were hungry. Then the old voice in your head (which turns out to be my own old voice, not sure who you all hear when you hear voices) sez something like is the stove off? Or… is that window/door locked? You get the idea. So we turned around having traveled a couple of miles to double check the house. House secured.

Okay, let’s get rol… “I gotta go potty!”

“Me too!”

“I’ll try as long as we’re here…”

“Me too!”

Ooohkay the seats were just starting to warm and just like that they were empty cooling off. Okay… everyone done? Good, let’s get in and let’s get goi…“I’m still hungry…”

“Me too.”

“Can we stop at McDonalds?” Sure…

So McDonalds it was… screwed up the order, not once but twice. Okay, food’s keeping the kids quiet and content, let’s get going for real now. Julie puts it in reverse and starts to pull out and asks me if I had the atlas. I looked at her with a look that told her that I did not pack said atlas.

Hahahahahahahahaha! sniff… cough… sniff… Hahahahahahahahahaha! sniff… cough… cough…

After we stopped laughing a decision was made. Instead of going home, losing another half hour in travel time with the potential to lose more time (as there would have to be some kind of treasure hunt to find our atlas) we thought it best to go to the Target right next door and pick up a new one. At long last, we are finally heading south on I-55, destination Missouri (about five hours after we wanted to be on the road by) but hey… who’s counting? Now that I’m done eating (but sharing my Mcgas with the rest of the car) my job has now become to get some sleep. I know you’re all ahead of me on this one; I couldn’t sleep a wink… even after such a feast too! Leave it to me to screw something as simple as sleeping in a car up. I sense this is going to end up being a problem at some point. As fate would have it (and fate has a very high success rate in things of irony) I started to maybe get to a point were I was perhaps feeling like I could potentially snooze a tad. Okay, I was getting sleepy, but there was a problem, Julie and I had already switched. See I thought I may as well drive as long as I couldn’t sleep so I talked Julie out of the driver’s seat. That strong-arming (as Julie calls it) took place in the lovely little town of Lincoln, IL, a town between Bloomington and Springfield, somewhere around or just past 1am.

What were we doing there? Well people needed to go potty! We saw a sign for a gas station and got off… in the darkness of the middle of nowhere Illinois. At the end of the ramp another little sign pointing in a left direction to said station. Turning left… driving… driving… driving… Where the hell is the station already? There’s the Lincoln Bank, Funeral Home, tractor dealer… okay, ya got me… but still no sign of the Citgo. Oh wait, I see another small sign, another left needs to be made leading us headed into a residential area. You’d think that the station would stick out, well; perhaps in the daylight it would have been easier. Better yet, it might help if the lights to the place were on and it was OPEN! The only place that was open (and not really an option) was a bar adjacent to the station out of which the locals were making their way out of... performing the last call shuffle.

This is where the beauty of being a male comes in handy (perhaps one of only a few, but it’s a damn good one in situations like these) come with me boys, we're going to go mark our territory. The girls on the other hand haven’t been shown how to… um… squat and go without a bowl. So it was pee on a pull-up time for the girls. Emmah had a bit of a problem and got back in sans pants… they needed some drying out time. I get the feeling that the aiming thing comes a tad easier for those of us equipped with um… hoses. There, that takes care of everyone… everyone ‘cept Julie. She is on a find and seek mission to find somewhere for herself to go. See we had kind of assumed when we pulled up that the location (and thusly the access) of the bathroom was in the locked building. Stood around a bit, eyed a door between the station building and another building, the two building creating a dark hall and it was this hall that the door was. Moving on and trying to find someplace else was NOT an option and so came the plan. Julie in a last ditch effort thought “why not try the door, maybe it’s unlocked” that’s right folks… it opened right up.

Who knew? I mean after all it was... um... dark.

Can you believe it, all that and we’re not even past Springfield let alone out of Illinois.

KUIYTAP

Next up... getting out of Illinois and to Cascade, Colorado

To read the next chapter follow this link... (Finally) Here Comes The Sun

Is It Really Time For Another Birthday?

In short... yes... Analiese a.k.a. Ana's

I know, we have so many people in our family it's like every other month, SOMEONE here is having a birthday. She celebrated her one year anniversary of her birth by jumping to her feet, running over to us saying out loud, "I've been sandbaggin' ya all, I can walk and I can talk... see!" Okay, so that's not how it happened... not even remotely close to anything like that. She did manage to get out a few sentences of her own speak, and a lot of crying.

Par for the course in a day in the life of Ana...

This truly is one of those moments that we said, "Wow, that was a fast year." The reality of it is that when she was born, we were still entrenched in Emmah's chemo... then the resection, then there was the rest of the chemo and the stem cell transplants and... well you get the idea. I know that as the years roll on and on and on, they seem to go faster and faster and faster... this one was like a blink.

Anyway...

Happy Birthday Ana, may it be first of many, many, MANY more.

Time Waits For No-One...

Hello and welcome back - oh wait, it's me who's back.

I see that it's coming up two months since I've posted anything, not like that matters, merely an observation is all. I also realized that I didn't post anything to commemorate Rachael's 5th birthday on the 20th of September... shame on me for that one. Happy birthday sweetie, daddy's sorry.

If you've visited Nick's page, you'll have seen that he's announced that we're back. I realize that some of you might not have even noticed that we were even gone... we were. As Nick said, we're back from Emmah's Make-A-Wish trip. I plan on writing all about it with pictures, but now is not the time.

It is with a heavy heart that I type these words. This past Saturday morning, the 20th of October, we lost a good man... Julie's dad passed away. He was just a couple weeks shy of his 78th birthday. Hopefully they're having one helluva party for him up there. Luckily, we were back Thursday and in time for Julie to see him Friday evening.

He will be greatly missed...

Smell That?

That rancid smell that is penetrating your nasal passage is the smell of the White Sox, or if you're over here, it's a fading musty smell wafting up from our recently drained indoor pool... a.k.a. our basement.

The scent of fall is in the air, it's been there all along, we just couldn't smell it through all the humidity and rain that we've had to encounter recently. Looking over the upcoming forecast, the weather (in a word) looks delightful. There's a word that we don't use enough... Delightful... said it again, no really, I actually said it aloud as I typed it. Say it with me... DE-LIGHT-FUL.

I know it's been a coon's age since I last posted something of length or substance. Can anyone tell me exactly what that phrase means anyway? Coon's age... I guess, for me anyway, it just falls into the category of just one of those sayings that we hear from time to time. I recently heard another... as drunk as a bunch of Indians. So I asked exactly how drunk is that?

Yeah... he didn't know either.

September's just waiting in the wings. As I look at the lower right hand corner of my screen here (and hover the mouse over said corner) I see that tomorrow marks the end of August... my *shudders* 43rd August. September just so happens to be my favorite month with October being a very close second. I love the fall... the crisp dry air, the changing of the leaves, cool nights that don't require my electric meter to spin like a tornado in order to enjoy a nights sleep. It also means that school is back in session.

The kids went back on the 23rd of August, so it's been a week already. Emmah's started Jr. High... 6th grade. Nick is in 4th and Jake is in 1st. Rachael is holding out for a better deal... she's in arbitration and is considering becoming a free agent. She misses the cut-off by a few days and so is taking part in home school Jeff & Julie style... mostly Julie right now, unless Rachael wants to learn how to put up clapboard siding. We initially were going to pursue getting her in (she's way ready for kindergarten) but in the end decided not to. Now with us working with her, she's going to be more than ready come next year.

As time marches on, there are things that as a parent that you are unprepared for. Things that you didn't exactly know were going to happen, or things that you didn't think would be said. This just happened to me the other day and it was said by Emmah, to me. I first need to do a bit of set up though.

Sorry, was just interrupted by a confused 6yr old little boy. He was doing the I gotta pee dance, but wasn't sure in what direction the dance floor was. I was quick to show him to the commode since there have been times that he doesn't seem to remember where to go, or does but forgets to lift the lid. Darin, if you're reading this, you might want to take note... perhaps teach the twins to pee in the tub.

Back to Emmah... Emmah seems to be making up for lost time and has to decided to jump (both feet) into school again. School starts at 8am, but she wants to be a teachers aide... that requires her getting to school at 7:30. Incidentally, this works out better because with her starting at 8 and the boys starting at 8 and the schools being in the opposite direction of each other it meant that everyone had to get up to get the kids to school... I'd take Emmah in the van and Julie would take the boys and everyone else in the truck. The 7:30 start time allows me to take her and then come home and pick up the boys and take them... the morning school shuttle service.

As usual, I digress...

Part of the deal was that in order for her to be an aide, it meant that she'd have to be diligent about getting to bed early enough... she does need her rest since she's still in recovery. Let's just say that she's a bit sluggish in the morning... I for one can totally relate. As stated, she's a bit sluggish and I end up nagging and pushing just a bit... the morning nagging isn't exclusive to just Emmah though... the boys can be sloth-like too. Anyhow, the other morning as we were getting ready to leave, she came to me and exasperatingly said because of my rushing her, I made her forget to put on her bra... which was followed promptly with a 180 and a dash off.

That's when it hits ya... pwang... right on the nose.

How do you prepare for that?

Lemme answer that... you don't and you can't.

Sigh...

What else...

Recently, I've had a couple of encounters with a very domesticated wild woodchuck. He lives under my neighbor's front porch, but seems to be in our yard a lot. One day last week, I heard some rustling in the bushes and I look to see him just sitting there looking back at me. I really didn't (and don't) want him (or her) in our yard.... he shows no fear of humans at all and the last thing I need is for one of the kids to get too close. It naturally positions itself in a place that isn't easy to access so that leaves me with limited options.

My first unsuccessful attempt was intimidation... I got as close as I could (without crawling back there myself and leaving me in a compromised position) and made a motion towards him. Picture if you will an overweight 42 year old trying to intimidate a woodchuck with a stomp and a loud HA!... GIT!

I think he was laughing too.

So I kind of felt like Carl Spackler (Bill Murray) in Caddyshack... "I think the foolin' around's pretty much over" A quick glance around told me that my weapons were limited to some left over logs that were sitting in the flowerbed. I had Nick cut up a branch from a tree that I trimmed and there were several 12-18 inch logs, 3" in diameter. So I toss one in his direction... kicks a bit of dirt at him and he doesn't so much as blink. Okay tough guy... here's another for ya. This one lands inches away from him, but he stood fast and didn't even flinch. I tossed a third and then a forth... it was the forth one that made him take a step. A single solitary step. If I had a BB gun, I'da popped a BB on his furry rodent backside. I mean he deserved it as he sat there mockingly staring at me as if to say you gotta do better than that pops.

So I ask, how much wood would a Jeff chuck if a woodchuck ducked chucked wood?

Other than that, it's pretty much the standard issue events going on around here.

KUIYTAP...

Hip hip hooray...
Time's come today...

Join in a big cheer...
Old enough for (root) beer...

Blueberry muffins devoured...
In less than 1/10 of an hour...

A smiling face shows he's fine...
For today Nicholaus turns 9...

HAPPY BIRTHDAY NICK!!!!!

Scratch... Yawn... Sniff...

I thought better of making the title Yawn... Scratch... Sniff...

Well, as the old saying goes... no news is good news.

And so it is... at least around here.

Not too too much has changed over the last two months... he said sheepishly. By glancing at the last posting here on the main page, I see it's been close to two months... I did post something on my page on the 22nd of June, so it hasn't been two months since I posted anything at all, just here.

I plod along on the house... I would be a touch further, but we ran out of siding and have had to wait and wait and wait for the next order to be delivered. Through a series of snafus which include misquoted price per linear foot (under cost... which incidentally got the order canceled) to a purchase order that didn't get forwarded on... in this case to the supplier... in all it red flagged three times, and not once did they call to let me know that it was in limbo. So at long last it's getting delivered tomorrow all 7,008 linear feet of it. Julie has seen the light... this time pre-primed. So two months for something that should've taken two weeks... just another banana peel tossed underfoot and about a month lost on putting up siding. On the upside, it's given me a bit of a break... but honestly, there isn't time for that now... Sept. 27th will be here before we know it.

We managed to finally rid ourselves of the storage space (money) black hole. Not that we wanted to continue paying month after month after month, but the last straw came when there was going be another price increase taking us over the $250.00 mark... totally outrageous. The increase was going in to effect on the 23rd of this month... so this past Monday. We emptied out the unit over that previous weekend and had a few loads left Monday morning before we could call it empty. Julie did a great job of getting all the tedious little stuff out (I had my share of it, but I hate that stuff) and I handled the big stuff... we took turns loading up the van, but don't tell anyone... it's still full from the very last load. So when 10:30am rolled around on Monday morning, I waited at the unit (they have to inspect it) and sent Julie off to say that we are out of here.

They told her that we were going to have to pay about $8.00 for the day. See, the gate is operational from 6am to 10pm... the office is closed on Sunday and didn't open until 9:30am Monday morning. Our hope was to be empty before the office opened... we missed by an hour. Anyway, they wanted us to pay the eight bucks... that's the cost of one day. They said that they could have rented out the unit. Ummm... hello... it's only ten-thirty in the morning... you still have time... and never mind all the other empty units our size. Needless to say Julie protested and eventually won out. Julie said that there was another customer in there (no doubt looking at our unit wondering why it wasn't ready an hour ago) and she figured they gave in to shut her up and get her out.

What else...

Oh... Emmah's Make-A-Wish wish has been granted. Her wish was to replicate our camping trip from 2001... so that's what we're going to do. We have started the planning recently... it will be a tad bit different than the '01 trip, but a long road trip just the same. We will be pulling the kids out of school for it since they will be back in as we will be heading out after the school year starts. It will also be different in that we have an eight seat vehicle and each seat will be filled with a butt. Which means eight butt's worth of clothes and gear too. Last time, we were in a seven seat vehicle and filled only five... Jake was just a baby then. We will be giving a true test to the trucks DVD player. We'll see if we can pull our stuff together and get out on time this time. Every trip... and I mean every... we always leave hours after we planned on leaving. I said to Julie that we should start packing now to ensure that we'll not have to pull an all-nighter to get on the road. I imagine that if we were to do so, that it would ensure nothing... just a bunch of kids wondering where all their clothes are... pretty much like they do already.

Emmah has started the last phase of her therapy... the bio-therapy. She's taking a high dose of isotretinoin... also known as accutane. It's two weeks on two weeks off for six cycles... she'll finish around mid-December.

Jake lost another tooth recently and Ana has cut her two bottom. Speaking of bottom, Ana is a bottomless pit... that kid can pack it in. Of all the kids, she's the slowest to develop. Not that we're worried... merely an observation is all. She's sitting and rolling over, but that's about as far as it goes. I could be mistaken, but most of the other kids were starting to crawl by now (9 months) and Rachael was practically walking on her own already. I say it's cuz we had her in the hospital. It was a sluggish birth and in order to ensure that she was okay... they put a screw into her head while in utero. It was a pressure transducer that they literally screwed into her head, but she's still cute... not so much she's screaming her blinkin' head off... which is about half the time that she's awake... which coincides with Julie being busy and not giving her the attention that she wants. I will do in a pinch and it works on down from there.

We recently took the truck in for some nagging little things... like a squeal from the passenger front tire. Julie took it in a few weeks back to get an oil change... I said that while they have up on the lift, have them rotate the tires... and while they're doing that, can they give the brakes a visual inspection. There were other things that I wanted checked out, but the main sand in my shorts was the brakes, that and I wanted them to inspect a leak. I spotted some hydraulic fluid on the ground in the same area of the squealing tire. FYI... I did check the brake fluid level and it was low, but not too low. Julie came back and said that they said that the brakes had about 30% wear left on them and that sometimes the humidity can cause them to squeal like that and what I saw was condensation run off from the AC and not hydraulic fluid. I said BS, I know the difference between water and hydraulic fluid and it's the wear indicator not the weather... we need new pads.

A week or so passes and I said that this is nonsense... I took it back in. In addition to our existing problem, it still had an outstanding recall on it... from January! They finally got the parts in and said that they would do the recall and while up, they would look at the brakes again. Well what do ya know... the outside pad had 30% left on it, but the inside pad had only 10%! Perhaps it was weather related after all... the weather was so nice that the mechanic wanted to get out of there! So for just under $250.00 later the front brakes are all better... the rear still has 50% and will probably will get done before the camping trip. Makes me wonder though... would they have stood behind the 30% story if there was extensive damage done to the rotor... if I hadn't brought it back in so soon after? I say that we would've been on our own even though it was due to incompetence and lack of effort on their part. I always assumed that a brake inspection would include looking at the rotor and both pads on each tire. But you know how that other saying goes... the one about assuming.

With that, I will assume that you've had enough.

Until the next time...

Keep on Keepin' UIYTAP

Fuzzy Wuzzy Wuz An Emmah...

The dome doth not greatly shine anymore...

I won't be long with this... Emmah's head is no longer hairless. She is sporting a down-like fuzz on her head right now and the race is on to see who will have longer hair by Christmas... her or Ana. My money is on it being just about a tie.

Somehow or another, she's managed to get a fever... guess all that hair is holding in all the heat, it topped 102 at one point... so she, Julie and the two youngest spent half the day at Children's. They needed to draw blood and send it off to look for any signs of infection... we won't know the results of the cultures for a couple of days yet.

Over all, she is doing well... though she had a long day at clinic on Friday... well actually a long day of travel. Traffic was bad due to a couple of accidents and as a consequence of that Emmah didn't eat or... more importantly... drink enough. I'm of the belief that dehydration is more the culprit than a brewing infection, but time will tell tale on that.

I'll try and get some of the albums updated with new pictures, but I ain't making any promises.

That's about it from here... just working on the house and taking pride in our neighborhood.

Off We Go Into The Wild Blue Yonder

Hey y'all... I know it's been a while since I've posted anything exuding my usual charm and wit... but it's hard to post with a nail gun in one hand and a piece of siding in the other.

Julie had asked me to finish up her post from Friday the 11th... read A Momentous Occasion... but I decided that I didn't know what else to add... I mean it seemed pretty complete to me. That and our writing styles don't mesh well. Then I thought I'll just hit the publish button and write something of my own... please contain yourselves.

Emmah's radiation is indeed over and done with and she did handle it like a champ... just like everything else that she's had to go through these past (almost) 10 months. I don't see Julie pining to make that drive to Northwestern everyday anymore, so it's a good thing that it's over.

Like Julie mentioned... she was the recipient of not one, but two Mother's Day celebrations and her participation to said events was made possible by Gramma's ability to take Emmah for the last radiation. Yes I could've taken Emmah but... never mind, it's a convoluted story. Anyway during their time together (Gramma and Emmah) an idea was hatched... the aforementioned Gramma-Emmah weekend... to which a twist was added. Emmah had decided that she wanted to surprise Julie and Jake with a Mother's Day/birthday celebration brunch... so we enjoyed that this afternoon.

While in the midst of preparing, Emmah found time to take two baths... two much needed baths! Gramma dug out the comet and s.o.s. pad and scrubbed her down. Emmah had a lot of dead skin that needed sloughing off and the comet and s.o.s. did the trick... okay, you got me, Gramma didn't use a s.o.s. pad, she used a wire brush. I don't rightly know what was used, I imagine a lot of rubbing and elbow grease. Brian knows all about that, just ask him about the time that mom tried to scrub some pigmented skin off his neck. I wasn't aware that having a neck THAT red was safe.

One of the chemo agents, the Thiotepa, made her skin turn brown... like a tan... but that tan wasn't fading... it wasn't peeling either it just kinda got darker and stayed... mostly on her scalp and under her arms. It was more like... hmmm like mud... actually dried up mud... let me explain. Mud when it's truly mud/muddy is smooth, but when the moisture is withdrawn and kept away for a long period of time, the mud dries up and the ground cracks into small odd shaped dirt islands surrounded by the cracks. Emmah's top layer of skin on her head was kind of like that... these tiny odd shaped islands of dark dead skin hanging on only to the little sprouts of hair. Gramma scrubbed it all away and now we can see how much hair there really is coming in. Nothing like a good scalp massage to get things going up there.

For the first time in almost 10 months... we will have for the most part a normal life for a while... not sure how to act, but willing to learn again. Emmah will still have clinic visits, but once a week or something like that. I'm not sure of the forthcoming scan/test schedule... and she will be starting retinoic acid soon, but it should be a far cry from what we've been dealing with. Not to worry though... I imagine that I will be spending my time on a ladder or plank... with a 20lb tool pouch tuggin' at my waist trying to take my pants down... which would be the most action I've seen in a while. Having a nail gun, a hammer, a piece of siding and/or a paint brush in my hand... all at the same time... will be keeping me plenty busy in this time of normalcy.

All this talk of work is making me sleepy... perhaps it's due more to the approaching hour than the work talk that's made me sleepy... either way that's a wrap.

Oh, one last thing...

Take your mouse on over to Jake's Blog... he's excited to share something with you all.

Until the next time I stay up past my bedtime...

KUIYTAP

A momentous occasion ...

...not only because of the Mother's Day serenade at Rachael's pre-school
or because of the Mother's Day Tea Party given by Jakob's Kindergarten
(of which I was the lucky participant)but because today marked the last day of radiation therapy for Emmah,
which she handled like a champ.
She will proudly boast that she made it through it all without ever taking Zofran,
the nausea medication that was prescribed.
She is a bit tired, but is celebrating by having a Gramma-Emmah weekend,
which includes a long-awaited and salivated over cinnamon roll and a long overdue bath
(that was delayed by PICC line healing and radiation markings we did not want to lose).
The last visit to clinic showed she was down 1 kg (which equates to 2.2 lbs),
so with radiation out of the way (along with the nausea it was inclined to cause)
we will be focusing once again on getting her back to a healthier fighting weight.
Emmah's eyebrows have sprouted up seemingly overnight
and her batting eyelashes are coming in a close second.
Her head is boasting mostly peach fuzz,
but hopefully it will see more growth in the coming weeks.

On to the next phase ...

And so today marks the start of the next phase in Emmah's journey to recovery ... radiation therapy.

Although she will actually spend more time riding in a car and sitting in the waiting room (actual radiation treatments run approx 20 min or so), this therapy packs a pretty big punch. The areas being treated are the tumor bed as it appeared before resection (plus a 2 cm margin) as well as a small area of her neck where there is still an enlarged lymph node. Unfortunately, some other body parts will be in the line of fire and will be forced to take some of the brunt of the treatment as well.

Her poor left kidney, which is finally back to its normal self after being pushed around by the tumor and after being a bit traumatized by the surgery, will likely end this treatment as a shadow of its former healthy self. Since neuroblastoma tumors generally arise from the adrenal gland, which is in close proximity to the kidney, the kidney seems to inevitably fall within the field of radiation. I have heard of some children who end up losing their whole kidney, so in comparison, losing only some of the kidney does not seem as bad. Still, you have to feel bad for that poor kidney of hers ... it has held up so well for her and we are forced to beat it back down once again.

Also, since the main tumor resided in her abdomen, much of the radiation will be focused there, which may result in some more nausea and loss of appetite (which of course only makes sense because she has reached a point where she is feeling well and eating with relative gusto). Hopefully it will not be too bad for her ... the word from the experts is that this should be a walk in the park compared to the chemo and stem cell transplant experience.

Will post updates as we move along ... radiation lasts for 12 business days, so this will take us through the 11th of May. Please pray for strength for Emmah (and the rest of us) and picture her having the wonderful summer that she missed out on last year. Thanks to everyone for your support ... it means the world to us! I have 2 packages of and several loose "Thank You" cards that I have been carrying around for months with the intent to write something a little more personal ... one day I will actually get them mailed, even though any words I would write could not possible capture just how thankful and appreciative we are.

You're Putting What Into Me?

I thought it might be interesting for everyone to see the list of things that have/had been given to Emmah in the name of treating her. This is comprehensive list of what was given/received during just this past (last) rescue/transplant and not the full run of her chemo.

Meds

Vancomycin

Acyclovir

Meropenem

Tobramycin

Fluconozol

Phenergan

Dilaudid

Adivan

Benadryl

Dopamine

Solumedrol

Neupogen

Zofran

Emend

Prevacid

Decadron

Tylenol

Morpahine

Pentamidine

Chemo

Etoposide

Carboplatin

Melphalan

Blood Products

Her own stem cells

Platelets

Red Blood

Other

Saline

Heparin

TPN

Now... I'm almost (that's almost) 4 times as old as Emmah and I can say with a fair amount of confidence that I haven't had even 1/4 of what she had. I'm guessing that I could count on one hand how many different things I've taken... well... okay... perhaps it would take two. That's not to mean that I would've had the same things... I'm referring just to the number (28) different things. I don't think that we even have that many different meds in the house.

Anyway, gazing at that list makes my head spin...

This Easter we are thankful for all our blessings, which include, but are not limited to: being able to spend Easter together as a family and all of our friends and family members who have supported us along the way and have helped make the past 8 months (can it be 8 already?) do-able.

With the chemotherapy behind us, we are hoping that Emmah too can experience a re-birth of sorts, in keeping with the theme of Easter and the spring season.

A very Happy (and Hoppy) Easter from all of us to all of you!

Moving Along...

My apologies to everyone for not posting that Emmah was home... I was too wrapped up in the glory and dysfunctionality that is home... besides, I felt it was something that Emmah herself should do, and so I made her do it.

By checking the counter info, I can see that there are a faithful few that have been checking in... perhaps it's more out of curiosity than anything else... but you're checking in nonetheless. So here's an update from the home front. Emmah is still slow to recover. Having just gone through all that she just went through I don't think that should come as any surprise... I can't even begin to imagine and I'm the one that was the closest to her through it all having been with her.

The next step for her/us is the radiation treatment, and not taking anything lightly or for granted, we interviewed /met with the two potential candidates... the two pediatric radiation oncologists in the area. We spoke with the one that would be treating her at Hope on Monday. Today we spoke with the one that would be treating her for Children's... which consequently would be through Northwestern. I think that Julie and I came away with a better feeling about Children's/Northwestern. We have no doubt regarding the competency of either doctor... just in some ways it comes down to a numbers thing... Northwestern sees the most cases like this in the Midwest... period.

So it's time to get all previous scans and reports in order and schedule the ones that need to be done before starting this segment of treatment.

Well... that's about all for now

KUIYTAP

Homeward Bound... Day+13

Lucky 13...

We are outta here... and Lord willing, this will be my last posting from a hospital room. I'm going home and Emmah will once again be staying at Kohl's house with Julie and Ana for a bit longer.

In the words of Porky Pig...

Bdb Bdb Bdb That's all folks!

Day +10

It's day +10 and more things are being taken away... another antibiotic (vancomycin) is being stopped. I for one am glad... it's a very strong broad spectrum antibiotic and one that she needed to be pre-medicated with benadryl for. I'm requesting that this weekend they turn down the pain med some since she can't go home on it... her bottom and throat aren't sore anymore... it's just her tongue and mouth.

I see that there is rain in the forecast for the next several days or so, so that must mean that we're going to be getting out of here soon... and well the plan as of this morning is that they're thinking early next week we should be able to move to Kohl's house. So there is light at the end of the tunnel. If you've been checking in on Emmah's page and checking her numbers, you'll notice that the important ones are slowly on the rise... and that's all we can ask.

That's it for now...

Hope Springs Eternal...

Happy Spring...

Day +8 or day two with a white count… a meek white count, but a white count nonetheless. Yesterday was day +7 (duh) and in keeping with the last rescue’s day +7, it was the first day that showed the WBC without the less than symbol, so too was this day +7. Yesterday’s WBC was 0.14… today is 0.15 and according to the doctors this morning, it means it’s for real… that is to say that the cells have landed. They also mentioned that all the cultures (to this point) have all come back negative… if nothing grows… they will start peeling back the antibiotics. Not a moment too soon for my liking. Just because nothing grew though doesn’t mean that there was nothing there… it means that they (potentially) didn’t find it.

Comparing this rescue to the last one… there are similarities. So here’s to hoping that things continue to be similar. If things hold to the same course then we may only have one more week or so in here… but that’s putting the horse in front of the cart at this point. Just like the last time the GCSF (aka Neupogen) was started yesterday… and if things go like the last one… day +10 should be around the time we see an ANC… a couple of days should tell the tale. With mouth sores and her bottom still being sore… the occasional bout with nausea and pining to go home it’s as the Talking Heads once said… Same as it ever was.

She did end up on the PCA (several days ago) and it’s funny to me that they’re like pushers… constantly checking in to see if she’s getting enough. Pain management stops by several times a day asking if “we need to increase it”. Truly no offense to the staff (said it before and will say it over and over, they’ve all been fantastic) but they remind her “don’t forget to push the button”. It’s just funny to me is all, I know that they just want her to be comfortable… as we all do… it’s just the approach reminds me of a pusher. Psssst… hey, you wanna feel good?

They noticed a bit of blood in the urine this morning… due to low platelets… and so she got a transfusion. Just in time too… she spent the better part of the late afternoon into early evening stuffing tissue after tissue up her nose to stop a bloody nose. Then once it stopped… she sneezed… yup, more tissue and more waiting. Stopped it again, but then she felt the need to blow her nose. I know.

Well, it’s back to all the fun that can be had in a 10x12 room with a TV that gets a handful of channels and a fuzzy speaker. A hospital wireless network connection that is well… more of a dis-connection. That is to say it seems to me that the connection status changes every time a door opens or closes in this place. To put it another way… breathe in… connected, breathe out… disconnected. In, connected, out not connected. Oh well, at least it stays connected long enough for me to tap a few lines out.

Sometimes…

And We're Back...

Sorry to all that were fretting over what was happening and what would happen next. I thought sleep was a tad more important since I was up for the better part of 36 hours.

I'm going to keep this short and to the point... we're back in isolation. We moved back upstairs yesterday afternoon... yesterday morning they said that she "looked too good to be here" ... here being in the PICU and said that she's needs to go back up.

So that's that... things are back to normal.

Not exactly how we planned on crossing the finish line, but at this point, I will take what we know as normal.

KUIYTAP

3AM Update

Your 3am up late update...

- Dopamine off

- BP 107/69

- HR 125

- still a fever

- one thing at a time...

Beware Of Calm Waters...

What a nice day... just sailing along singin' a song... ahhh... feeling the warmth of the sun on your face, the breeze in your hair... just drifting along. Relaxing image isn't it?

That was kinda how things were up until Friday night into Saturday. The smooth glassy surface started to get a few ripples on it and it didn't take long for it to start getting choppy which quickly gave way to rapids. Who knew we were heading for the falls without any paddles?

Okay I don't want to give a totally hopeless picture here, but things could be better. We're in PICU for at least the night. It would appear that the "engrafting" fever might be more than that... only time will tell. The main culprit is concern over her blood pressure... it was low... like 80's over upper 30's low 40's low. That and her heart rate was in the 160 range. So that started a chain of events. Unrelated was a blood transfusion... I only mention the transfusion since it was something that they wanted to wait 'til it was done before moving on to plan B and or C.

Plan A was to boost her fluid level to see it that would do it... it didn't. Then she got the transfusion (she needed it aside from this event)... that didn't do it. Plan B eventually became plan C... anyway it was time to move to plan B... dopamine. They started out slow and low and gradually increased to a level they on the 4th floor were no longer able to monitor (hospital policy) she was at 12... don't ask what that means... I'm not going to explain... it's inconsequential. They started her at 8... no change... went to 10... no change, then to 12... still no change and eventually to 14. Anyway, when they reach 10... she needs to be moved to the PICU... it's policy... so when the hit 10 mark and still had to go up, it was time to move. Arrangements were made and so we went.

Once we got in here and got her hooked up to the PICU monitors and such, her blood pressure was too high. Time to wean her off the dopamine a bit... so right away, it was dropped to 12, then quickly 10, then 5 and right now, it's at three and the pressure is still good. At some point tonight/this morning, they will take her off it and see if she can maintain. They also determined here in the PICU that she was a bit dehydrated... even with the TPN... so extra fluids are being given. Hasn't helped with the accelerated HR but, and I'm no doctor, I think the advanced rate is due to the fever... well the fever is player anyway. So here I sit in her room watching her sleep and still battle the fever and what ever else is going on in her battle weary little body. I don't figure on getting too much (if any) sleep.

I never thought I'd be saying this, but I long for the comfort of isolation.

KUIYTAP

Off The Treadmill & On To The Rollercoaster

Now that we're off the chemo treadmill it's "all aboard" the nausea racer with all its ups and downs and twists and turns.

As mentioned in previous posts, she's not a fan of Zofran, Kytril or any of the other anti-nausea meds and I for one can not speak for their (non) effectiveness. I can only go by what I see... and what I see is Emmah wanting to just jump to the finish line and not take the steps needed to get there. It's easy enough to do for any of us no matter the circumstance. If ever there was a time to make that leap though it'd be now. I'd say that she's earned it... I just wish I could carry her there and not have her have to do it herself. Ahhh, and now we see the problem... she has to do it herself. She was doing well... and she still is... it's just the stepping has slowed and there's a lot of standing around gazing in the direction of said finish line.

I can only imagine what it's been like... after all she's still a child fresh off her 11th birthday and I've only experienced it vicariously through her. I have tried to strike a balance of what is perceived as medically helpful and what is mentally helpful to Emmah's state of mind... and let me tell ya, it ain't been easy. Obviously some things have to be taken... and they have... but I usually back off and let the staff do the dirty work or be the bad guys since I still have to go home and live with her. A side note... the staff at Hope and CMH have been great and have (for the most part) let us call the shots regarding what she does and doesn't have to take. That being that there are things that are considered helpful and thus optional and we were never pressured into taking them... so kudos to both staffs.

The eating has fizzled to a stop... actually, it's more like she wants to take flight instead of crawling to run and running to fly. She wants to bypass the blandness of crackers (and the like) and go right to the hard stuff... Spaghettios. My pleas of taking it slow fell on deaf ears... she wasn't having any of it. So the other night I obliged and made her some... half a can of which she ate half that. We got the chance to see it again a few hours later. She then was saying that she wanted a Pizza-Hut personal pan pizza. Huh? I said that from here on out, we need to slow down a bit. She agreed, but I know she doesn't want to. She was doing better... in my opinion anyway... when grazing on crackers all day long, but who can blame her for not wanting to make it a staple of her diet... even if they are Club crackers? I'm pretty certain that the body will tolerate the crackers, it's the mind that wants more.

She's had few other incidences of hugging the pink tub since coming off the chemo and she's put herself back into the Ativan/Benardyl mindset. Getting her to eat anything from here on out will be a challenge. Somehow though, I did manage to get Zofran in this morning... right before her Ativan and I know that she will "blame" the feeling better on the Ativan and not the Zofran... I think the Zofran does do something, but it is limited in what it can do.

Okay, I started this post this morning... as the day's gone on, there's been some change. Her throat is sore, no mouth sores yet... just the throat. We were told during the first rescue that they look for what they call an engrafting fever. Perhaps it's on its way... she had a temp of 100.00 but the next one was back in the normal range. The fact that she had one at all... to me anyway... is a good sign. Generally fevers are not a wanted thing, but in this case, it's a sign that the cells have landed and are seeking residence... provided it doesn't get too high. Whenever she spikes a fever of... hmmm and I should know this by now, but I don't recall, I think it's 101.5... they have to draw labs and get it cultured to ensure it's not an infection. If that is in fact the case here... that's it's an engrafting fever... then she's on about the same schedule as the last rescue.

I know I've said this about a thousand times already... so once more won't hurt. I will be glad to get this over and done... to put it behind us never giving even so much as a sideways glance back. She's using the suction tube again since it's hurting to swallow, but it's nothing like the last time. She's also requested morphine again... not on the PCA... so it's not a constant feed but just on a need be basis that she's getting. She's spent the better part of the day in a drug induced sleepy state... sad to see, but if it helps her get through, then that's what we'll do.

Until the next time I'm feeling "inspired"

Cast Into Isolation...

Getting reacquainted with an old friend… room #419… that’s where we are now having been moved down the hall yesterday.

All systems are go for the rescue today… Julie’s even gonna check it out and take a front row seat for this one… it’s must see thera-py. We were told yesterday that it wasn’t going to take place until 1pm. So that’s a tad later than the last one… the last one was @11am. Seems it's a busy day for the stem cell team having three transplants/rescues taking place… Emmah being one of them.

Just watching Emmah these past few daze, she seems to be in a better place than when she was before going into the last one. Even though this go round of chemo was for 96 straight hours… she still has had three days to recoup whereas the last one had a 6 day chemo schedule which only allowed a one day recoup period and it was moving day at that.

The food is still of marginal interest to her, so that is a plus. She is eating… somewhat anyway. I can only manage to get her to eat one meal a day, still not able to get her to nibble all day long. She’s not drinking like she needs to be… hopefully, that will change before too long. Proper hydration is really important and she doesn’t want to have to go home on the fluids again… we shall see.

She spent the weekend enjoying her birthday here at club CMH. The night nurses/nurse decorated her room while we were sleeping hanging little happy birthday signs and things of that nature. She didn’t seem too impressed, but then again, she was still getting her chemo when she awoke and saw it. To put in perspective, I was more excited/enthusiastic than she was… at least outwardly… that the chemo was done. She (understandably) goes through these phases of quietness… talking quietly, averting her gaze when talking and so on. It’s been that way as of late… my guess, and really this isn’t too hard to figure out… she’s grown tired of this whole ball of wax here… the whole process has gotten old.

Back to her birthday…

Once she came around and was out of her sleep stupor, a group of nurses and child life volunteers came in bearing gifts… even a singing of Happy Birthday… that even Dr. Tse got into too. After opening her gift bags, she was handed a personal size cake. Just when you think that the fun is all done, Uncle Brian showed up with a gift too… freshly bagged from Best-Buy… (just teasing UB) it was a game for her Nintendo DS. He hung around for a couple of hours and then was on his way. The visits didn’t end there though… grandma came out to visit too and she stayed for a couple of hours as well. Julie and Ana also came out and brought cards and food from home… which pleased Emmah. That was Saturday…

On Sunday, Julie came back out… this time will the rest of the clan. We all spent another few hours partying living large on high quality food stuff… McDonalds.

Not much else to tell… hoping the status quo doesn’t change… it’s been pretty mundane to this point. I will again post her daily counts on her blog page for those interested.

I for one can’t wait for the hospital sitting to be over… I’m shocked by how much all my clothes have shrunk over these past six months… everything ‘cept my shoes.

That's gonna do it for now, until the next time.

The Melting Of Emmah...

'Twas the last day of chemo
And the captives of the room
Passed time lamenting
Hoping passing days just zoom...

Caring nurses hung toxins
Each with great care
While Emmah sat dreaming
Future days and flowing hair...

The good doctors smile
Inquiring to her condition
Always leaves me thinking
How would you be if in her position?

As the last bags hung
The ending’s finally begun
With the line close in sight
Need to just make it this night...

So to join in our fun
Do not come undone
Just top off your lungs
Say with us IT'S DONE!

We know isolation awaits
Gazing near future dates
But tomorrow's a lucky seven
It’s the day Emmah turns eleven...

(actually today by the time most of you read this)


Ahhh... the perils of late day postings, but that's when the creativeness flows best... of course you need to consider my writings here as something creative in the first place. I mean over the years of changing kids diapers I've viewed (and smelled) things that have been pushed out that could be considered creative... so it's all subjective.

Today was a good day it began like the others... we woke up.

She took her last Emend today as well as got the last of the Decadron. She decided that the Zofran wasn't working anymore, so we're stopping that one again as well. She had eased off of the eating some Thursday afternoon into evening... as in she ate nothing after the EC had left. This morning started out the same way and try as I may, I couldn't interest her in eating anything. I told her that she needs to keep on trying cuz she weighed in at 31.75kg... for the rest of the metric challenged, that's 69.9967682 pounds. So I told her that she was one cracker away from 70 pounds... 70 pounds is our personal benchmark weight or fighting weight.

The great thing about mornings is that they are followed by afternoons... I finally got her to eat a cracker and by the time evening rolled around, she was an eating fool. Another cracker... and a piece of homemade garlic bread and some of the leftover hamburger helper that she was pilfering from me. Add to that a couple sips of Coke and you have a genuine feast going on. I shouldn't make light of the fact that she's eating. Getting her to eat anything at all is a major breakthrough as eating during chemo treatments is unheard of for her.

She spent time whipping up on the social worker/teacher playing a game called SET... the family game of visual perception... so I took this opportunity to slip away and take a shower... during which time the teacher left. Feeling rejuvenated (and smelling a tad better) I took a stab at the SET game and was quickly disposed of... she whipped me too.

I know I have been dreaming of this day ever since we started in August and finally... it's upon us. As of my writing this we are a mere 11-12 hours away from the end of the chemo treadmill. I do believe it is a treadmill that Emmah (and the rest of us) will gladly step off of. Perhaps a ceremonial stomping of the empty chemo bags will be in order. Now the rescue and isolation await and Emmah is eager to go home... wanting to entirely bypass the layover at the Kohl's house. She's resting comfortably as I tap away and wrap this up...


Wonder if she's dreaming about tomorrow?

Going Quietly Into The Night...

Day -6

I hate to keep on driving a point, but for the sake of perhaps only my amusement I will... again. What a difference a day can make... well actually a few hours... five-ish to be exact.

Hmmm, can five-ish be exact?

Yesterday, Tuesday, was the start of this last leg of chemo... the proverbial carrot if you will... it marks the end of the line for the chemo. As previously mentioned... we have the dubious distinction of adding yet one more (and last) toxin getting pumped into to Emmah's little veins... Melphalan. It didn't take long for it to introduce itself... within an hour she was hugging her pink tub... a.k.a. the puke bucket... a constant friend and adversary all in one.

Previously, during her last rescue, she was taking Ativan and Benadryl to cope with the nausea... she long swore off Zofran, Kytril (and the like) claiming that they didn't work for her... Zofran and Kytril are specifically for nausea. She got to liking the Ativan and Benadryl since they make her sleepy and they allowed her, in most cases, to sleep for several hours. The draw back to that, at least from where I was sitting, was it kept her in a semi-stupor. It was acceptable to me since she was comfortable and I knew it was temporary... at least until the bulk of the nausea had passed.

They all try, and have tried, their collective bests to coax her into taking something for the nausea, but she's held steadfast and resisted their efforts. After verifying (long ago) that it wasn't a mandatory thing, I for one was not about to get on her bad side and make her take anything. She is old enough and if she feels like it wasn't working, and didn’t have to, I for one wasn’t going to push it on her… besides, if she feels that it doesn’t work, then half the battle is already lost. She was holding off on taking any Ativan Tuesday morning because Julie and the girls (a.k.a. the estrogen club… EC for short) were coming out and she didn't want to be all loopy when they were here... so she suffered until the EC went home around one in the afternoon. I had already given the nurse the heads up to administer it as soon as the EC had gone. They left, she did... and Emmah fell asleep.

Now earlier this same morning, during rounds, the doctors tried again and presented a different drug... Emend... it's taken once a day for only three days and it lasts for like a month or something and it's usually given to the older patients. Though Emmah really isn’t quite in that group, they felt she was on the cusp, but it involved talking a capsule. A what? A capsule... not available in IV form. This was met with an immediate no as Emmah has yet to learn how to swallow pills. As you might imagine, this inability has presented a whole slew of obstacles to overcome. Anyway, they went on and explained that there are three things that make up this new approach. I say new because it was new to Emmah/us. It entailed taking the Emend, getting on Zofran and adding Decadron… they said that they work best when all three are given. Emmah still rejected it. So I kinda took the “oh well” position and said ultimately she’s the one to pay the fiddler. Moving on from this point…

The EC arrive and Emmah is in full glory... rather upsetting to watch. I’m all too familiar the routine and have become somewhat immune to it, Julie on the other hand is not and I could see it was bothering her. Don’t get me wrong, it bothers me too, I’ve just seen so much of it I’m like teflon. It wasn’t the visit that Julie, or Emmah for that matter, was envisioning. With a slight detour to the parent’s lounge to pop a bag of microwave popcorn for the road, the EC was preparing to leave when we ran into someone we’ve befriended here, Sue, and we got to talking. Her daughter, Megan, who’s either 16 or 17, is in for her second transplant as well (different protocol) and had taken the Emend and was feeling great… that was enough for me. I said my good-byes to the EC and set off to inquire if the capsule could be opened up and taken mixed with something… the way Emmah likes it. You see… the ONLY way we can give a pill to Emmah is to crush it up and mix it with melted ice cream. She doesn’t like liquid meds... complaining about how they taste. Then she complains about how the crushed pills taste. She gets so worked up at times causing the meds to react as if they’ve hit a trampoline somewhere in her esophagus… in and back out. We’ve said to her time and again that there’s a reason behind learning how to swallow pills… pills generally taste bad when you crush them and by swallowing them whole, you bypass that taste. Getting her to take any kind of med orally is a major production that is usually preceded with “I wish I didn’t have to take this”.

Sorry, I digress…

I discover that the capsule can be opened and taken… fantastic! Now my next objective is selling it to Emmah… who now is starting to feel the Ativan. I figure that she’ll be less confrontational this way… less being subjective naturally. Not surprisingly she’s a tad bit resistant. In trying to coax her into this, I ascertain why she doesn’t want to give this a try. Ready for the irony here? She’s afraid that she’ll throw it back up. So I ask… What’s one more time then? To which she replies… “I’ll have to take it again and again and again until it stays down”. Makes me dizzy… I asked her what have I ever made you take that wasn’t mandatory? (The answer to that is nothing by the way… ‘cept for this time) I told her that I was putting my foot down and that we were going to give this a try. This was met with some crying and her emphatically saying that she wasn’t going to take it. I let her drift off to sleep and asked the nurse to get it all together, that we were going to do this. A couple hours lapse and now I have it all ready on the spoon with the melted ice cream complete with a cherry on top. I wake her up and slip her the mickey… and she drifts back off to sleep… but before doing so, she sez that she’s not going to take this tomorrow. Little bugger…

Jessica, the nurse practitioner, stops by like five minutes after I got it in her. She’s glad and sez all we need is it in for 30 minutes… meaning if she vomits after that 30min mark it’s safely in. She then tells me that she hopes it’s not too late and that this is more of a pre-med type thing… get it in before starting. Makes me scratch my head and think then why not Monday night with this then instead of after her chemo started Tuesday morning? I mean we were here. The upside to this capsule is that the inside is not a powder but tiny little beads (pellets, balls whatever you want to call them) about the size of a pinhead… hence no immediate taste to them. Much like certain types of the candy topping sprinkles that you might see on a cupcake… or in our house just sprinkles… sometimes eaten right out of the jar.

Well… this is kind of where we came in. With all three meds in and having napped until 6:30 in the evening, she wakes up hungry. Say again? I’m hungry… can I have something to eat? Ummm… sure, how about some crackers? She also told me that she was thirsty and wanted a Coke. Okay… whatever you want. She proceeded to eat 2/3rds of a sleeve of Club crackers and drank about half of a 20 oz. bottle of Coke... further proof that miracles do happen. Being fresh off a five hour nap, she then proceeded to stay up until about 3:30 in the morning… naturally. That also takes us to today… Wednesday… and good news… the eating continues. More crackers, more Coke, some juice, Doritos, and Lucky Charms (sans milk) and a very small taste of my breakfast of hotcakes and sausage.

By the way… in case anyone is wondering, she did take it today without any fanfare even saying that she didn’t taste it, only the ice cream (which incidentally will be vanilla tomorrow… she tried chocolate today) and she will take it tomorrow, Thursday as well. She still won’t give it (the Emend) any props saying that it was the single dose of Ativan that was enabling her to eat like that.

Oy vey!