Nothing To Report...

I thought that I'd take a moment to report on nothing...

Okay we're still here, as in home... for the time being anyway. When we went in on Monday, it was jointly decided (by the doctors and us) that it might be best to let Emmah get on more solid ground, that is to say give this cold or whatever some time weaken a bit and give her a chance to get her feet under her. We are going in tomorrow, Wednesday, and they are going to reevaluate her then... so there's the potential that she will get admitted tomorrow. I mean she is feeling better and the fever has left the building... but better safe than sorry... right?

It's really a double double edge for us... They say that transplants work best when they are close together, but at the same time you don't want to send her in on a downward slide either. She's still considered on schedule even if she doesn't go in until next Monday. The other edge of course is the obvious one... who wants to go back in and do it all over again? The flip side of that is the other school of thought... we need to get it done so let's get in and get done and behind us... let's be finished with it!

One last request here... we'd like it if all that visit here could, or would, take a moment to sign Emmah's guest book... you have to go over to her blog to do it though. It would mean an awful lot to all of us if you could take a moment to sign. Click on the MY GUEST BOOK link at the top of her page... after that it's pretty straight forward.

We do ask of you though... should you opt to sign the guest book... that when you are asked to choose an identity, that you select other and just leave your name. You can always sign your name in the body of the text at the end of your entry too... or go crazy and do both...

While you're over there (Emmah's blog) check out the newly posted photo album.

Hmmm... so it would seem there was something to tell after all...

KUIYTAP

A watched fever never breaks ...

Well, Emmah's fever still lingers ... comes and goes ... and comes and goes. It did get up to the "calling" point Friday night (after a long day at clinic), but Dr. Kletzel (who surely appreciated our paging him at 3am) did not feel that it necessitated her coming in to the hospital. So, for now, we continue to monitor Emmah's overall condition and the temperature that likes to vascillate.

Though Emmah was feeling woozy during clinic on Friday, and though she did spend most of her time Friday afternoon and evening keeping the couch company, the general feeling of malaise seemed to subside enough on Saturday for her to read a book, and play with her Leappad (and set a new personal best of 20 states in the Eureka! game) and enjoy a piece of blueberry coffee cake made belatedly in honor of Dad's birthday (which y'all may recall was spent in the hospital this year).

Today she is slated to spend some time with Gramma Karen over the lunch hour and enjoy some afternoon "tea" with her cousins. With readmission looming in the not too distant future (i.e., possibly Monday night), we are hoping to give her morale one last positive boost before having to cope with the rigors of chemo once again. The doctors will be reassessing her condition Monday afternoon before making the determination as to whether or not it would be prudent to start the next round Tuesday or allow her additional time to recover from her viral infection.

Stay tuned ...

What A Difference A Day Can Make...

Yesterday was a day... as today is a day and tomorrow will be a day too... It's funny what a difference a day can make... I know it's sounds cliche-ish... but it is true.

Yesterday this was Emmah... out playing in the yard... sledding and enjoying the warm weather for a few hours.

Today she's kinda coming down with a cold... well has come down with, and it has a matching cough. For a limited time only, it has a low grade fever attached with it too... 100.1. She's on the borderline... if we get two readings of 100.5 in a 24hr period or if it spikes to 101 she has to go in. She's not eating like she needs to and isn't even close on the drinking, so we called and she's going to go back on fluids. We... along with the Doctors at CMH... decided to see how she would do off the TPN... we made that decision on Monday when she and I were at clinic and were going to reevaluate on Friday... her next clinic visit. That was a couple of yesterdays ago. Anyhow... since that time, she's not been able to hold up her end... so in an attempt to not have to go in before it's time, she's going back on fluids... not TPN mind you, that's liquid food... she's just getting regular fluids.

And that leads us to...

Tomorrow... hopefully it will be an uneventful day with regards to Emmah... that's even if we make it through tonight.

Well... in my last posting I mentioned the confusion regarding when we'd be going in next... it is in fact Monday the 26th... chemo will start the 27th... Tuesday. It's only fitting that she be in for her birthday... I was in for mine. Based on how things went with the last rescue, they've gone ahead and penciled in a release date already... hope they didn't jinx us.

That's gonna do it for now...

KUIYTAP

Well... like Julie said, they've been sprung!

It is nice to have our family running at full dysfunctionality once again... and to celebrate, we took down the Christmas tree yesterday. It was just a tad dry and was dropping just a few needles... we won't talk about the dust that had accumulated on it. We are truly dysfunctional and a wee bit quirky... I don't know of anyone who takes their tree down like we do... either by pruners, or this year a sawzall! Oh Yeah! We've cut them up every year but this year we've decided to save it to burn this fall in the firepit... the firepit that still has to be built.

We feel guilt wash over us when it's time to rid the house of the tree... I mean it was, after all, perfectly happy in the ground before we came along and cut it down and once it's services are no longer needed, we cast it out to the alley... we experience this guilt every year. Then this year... because of circumstances beyond our control, it didn't even get a proper decorating... a couple of strings of lights that only covered the top 2/3 of the tree and a hand full of ornaments that were received as gifts this year.

Sorry... I digress.

It is nice, in a weird way, to be able to be enjoying this dysfunctionality... we're making the best of it since Emmah's stay will be short... two weeks short. BUT... this is, as they say, the home stretch... that and it's the last chemo session... hopefully forever! So let's get it done and over with and behind us!

I know Julie mentioned that we'd be going back in on the 26th, but according to the powers that be... the good Doctors at CMH... we were told that she wouldn't starting the second transplant before day +35, or day 35... anyhow, the 26th is day 31. We obviously need to find out what's what here, I mean they didn't arbitrarily choose day 35... so I called the other day. We're still waiting on an answer... perhaps they'll have one today when we go to clinic.

Emmah has been working on eating and drinking more, and she's coming around... having to yet again, but not enough to be free of her TPN.

I also would like to echo the sentiments expressed by Julie that and express my thanks once again. To all who have helped us... past, present and hopefully into the future when, or if, needed... we couldn't have done it without you all... thanks.

KUIYTAP

Day +20 = Sprung from Kohl's House

Well, today is the day that has been long awaited by all. The good Dr.'s at CMH have given Emmah the green light to head back home (with the caveat that she not participate in any extreme sledding or activities of that nature). We are happy to be back together again ... one big, happy, dysfunctional family! Emmah needs to check back in a couple of times next week, but is free to pursue non-chemo/stem-cell rescue related interests until the end of the month. She is slated to begin the second round of high-dose chemo on Feb 26th. This means she will likely be in isolation for her 11th birthday on March 10th (not the most ideal of situations), but we have promised her that we will be sure to have a proper celebration once her taste buds have regained consciousness and the winter wonderland has thawed. She is very intent on making up for our not being together for Valentine's Day ... heart shaped pancakes are on the menu for tonite (once we get the lines to the dishwasher unfrozen again) ... Mmmmm! Yummy! Thanks to everyone who helped make this past month's journey a whole lot easier and thanks for keeping Emmah and the rest of us in YTAP!

Day +13

Well... it seems that the rumors are true, we're sprung from isolation and the hospital. Not home home mind you, but sprung from here. We... we being Emmah and Julie and Ana... will be staying at Kohl's house, I get to go home and reintroduce myself to the other children. See, she has to be within a half hour of here and so that's why the Kohl's house... it's just around the corner from here. Our hope is that Emmah will get to come home before we start the next one.

She's also basically off everything... still the TPN, but that's it. They will be stopping the neupogen... well stopped... last night was the last one. Her counts will slide back down some, that's expected. The true test is how they respond once off the neupogen... and that response is what will determine when she gets to come home.

Tomorrow will be a party day... Emmah's release and Lyndsey's birthday... just looking forward to getting out of here. So 22 total days... makin' out on the low side of the 3-5 weeks. Okay... we're not out yet... but by this time tomorrow we will/should be.

That's it for now...

KUIYTAP

Day +10 = 73

10 = 73... howz that possible?

Lemme 'splain...

It's Day +10 and today is the first day that there is a number after her ANC, which is a good news cuz that means we're that much closer to getting out the door here. That doesn't mean home mind you, just out of isolation and to the Kohl's house. We've been given conflicting stories, one story has Emmah ahead of schedule, the other has her right on schedule... either way, it's all good.

She's still experiencing sores down under due to peeling skin. The throat discomfort is not as discomforting as it was a week ago. They are peeling back some of the meds. One antibiotic is gone and they are cutting back on the morphine. She for the most part has remained fever free, I mean it spiked a couple of times, but nothing that stuck around. So things are looking better than they were a week ago. All her lab cultures have come back negative... blood and urine. But... they have mentioned that perhaps she can get out by the end of the week... we shall see.

KUIYTAP

Say Hello To My Little Friend... Day +7

So... it's Day +7

What does that mean? It means that yesterday was Day +6 and tomorrow is Day +8. Okay... it means that it's been one week since she got her cells back. It means that she's had a week to "recover". It means that it's time for me to take a shower.

Okay... actually I did that yesterday... but it's kind of like camping... got nowhere to go and not seeing anyone... it's just too easy to wake up and do nothing and let one day roll into the next... not even bothering to change your clothes. I know... disgusting. It had in fact become a contest... to only me I guess... to see how long I could go without one, that is to say who would not be able to handle it first... me, Emmah or the staff. I finally caved and decided that I could no longer tolerate myself and the staff was just being polite. I would've/could've gone longer, it wasn't that bad, but I figured it was high time... and no, I will not divulge how long it was between showers... only the nose, sniff... sniff, knows... but I think I eclipsed my old record.

Hey, records are made to be broken...

Okay... so today is Day +7 and that means it's the start of her Neupogen... all part of it all. Follow that link to see what Neupogen is and does. It's been a long week of a raw throat, sore mouth and sore bottom region. The sore bottom is due to the Thiotepa and her peeling skin and the new skin is kinda raw and well, it's starting in very inconvenient spots for her. She was up 'til like 4am this morning... and has finally fallen asleep... finally.

She is doing better, they keep on saying that she looks great, but honestly, what else are they gonna say, "she looks like crap"? Anyway, she does look pretty good given all she's gone and is going through. Her spirit is lifting a tad now now that the soreness of the throat seems to be lessening... just a tad. She's not suctioning out as much mucus as before, it's mostly saliva now and she's also better able to talk now... too bad, was enjoying the quiet. Seriously though, she is improving and if you've been checking in to Emmah's blog page, where I'm posting and updating her counts, you'll see that her WBC is on the rise... very small, but at least the less than symbol is gone.

Not much else to tell, just waiting and waiting... though, I must say that if one is to be trapped indoors, this is the time of the year to be trapped. I can honestly say that we're not missing the experience of the bitter cold weather that has descended upon the area.

Okay then, until the next posting...

KUIYTAP