Monday, December 31, 2007

Better Every Day!

Andy's playing catch-up. You know that physically, his only real setback is walking. Developmentally, talking. He's been a bit behind socially, but he's really catching up on it. I can't really explain, you just have to see him. But yes, he is definitely catching up already.

If Andy's not walking by the end of January, he'll go to physical therapy. No big deal really.

Better every day! Happy new year! Enjoy your 2007 memories today. I won't.

Sunday, December 30, 2007

Still Doing Great!

Yes, I spoke too soon. Andy's not depressed at all. He's doing great. Better and better every day. This makes me very happy.

So the Patriots did it. I never thought I'd say this, but congrats Pats. You did it. They are a special team. I just wish happy-ass wasn't their QB.

So I have a cool new iPod nano and what am I doing? Listening to a 30-minute Wall St. Journal podcast. I suck. And I'm a nerd.

Happy Sunday everyone!

Saturday, December 29, 2007

Better Day I Guess

Anyway. Andy had a much better day today. He was acting like a 16-month-old today. Maybe I spoke too soon saying I thought he looked depressed. I dunno. But we were all much happier today.

Happy 30th Bethre!

Friday, December 28, 2007

Andy's Slowly Adjusting

This was the longest we have been in the hospital since that first stay. It's taking both Andy and me a while to adjust, but especially the boy. I still hesitate to throw diapers in the trash, for example. Because in the hospital they weigh them before pitching them.

But even moreso, Andy's being pretty slow to adjust to being a kid again. He would rather sit on our laps doing absolutely nothing than play with his brother and sister.

If I didn't know better, I'd say he was a bit depressed. And I wouldn't blame him. Andy has a very difficult life right now. He's in and out of the hospital. He gets poked and prodded. He has to have an IV pole wherever he goes. He's forced to sit still while he gets his blood pressure taken. It goes on and on. This is very rough on a baby.

Hopefully he'll snap out of it. I don't like seeing him like this.

The good news is that he's better today than yesterday. He was better yesterday than the day before. He was better that day than the day before. You get the idea.

I hate cancer.

Guess where Julie spent Christmas Eve? The Emergency Room! Yep! But it was for something normal for once. She stepped on a piece of glass and had to get it removed.


Don't be surprised if there aren't many more posts between now and 1/7. Not too many more updates to give on the little guy.

It was interesting how people kept asking me, "Where's the Kanadian?" all day on Tuesday. And I know they weren't talking about my friend because she's only half Canadian (with a C). Everyone referred to Greg as "the Kanadian" (with a K). I love it.

Thursday, December 27, 2007

iMarketing and a Close Call

First the lighthearted stuff. I bought into iMarketing. I think. Ya see.... When I was a teenager I had a Walkman. I pretty much destroyed that thing. It went with me everywhere. Later I had a Discman. But it was too big and bulky to go everywhere with me, although it did go quite a few places.

Then came 1997. I discovered the MP3. Maybe it was 1996. Whatever. I came up with the idea of taking a flash card, attaching electronics to it and putting a headphone jack in it. But I was too lazy to patent the idea and was sure it would only be a matter of time. And sure enough, it was within a couple years that the first MP3 player came out and it was very expensive.

Not too much later the iPod came out and all iHell broke loose. iMarketing at its finest, ladies and gentlemen! Ya know what? The iPod is not the best MP3 player out there. There are better. But guess what? Everyone wants an iPod!

At one point recently I mentioned to Julie that I'd like to have an iPod. Not any ol' MP3 player. An iPod.

As it turns out, thanks to more than a little help from our friends, Julie was able to make that happen this Christmas! I couldn't believe it.

Now ya know, I have an MBA. I like to think that I'm marketing-savvy enough to see through the iMarketing tricks. But I guess I'm not. I wanted an iPod. *sigh*

The 3rd Gen iPod Nano is pretty cool. Excellent UI. iTunes is a really good software platform. They really have something special going on with the iPod, I'll give them that.

Now everywhere I go I have these damned earbuds in my ears. Just like when I was 12 listening to Open Up and Say Ahh on my Walkman. :)

In a total change of gears, I was thinking about Andy today. Ya know, that was a close call. Very close. Too close. We could have lost him. I'll come right out and say it. My baby could have died. If he would have had to wait that extra week to originally get to the doctor....

Ok, I can't live in Ifville. Ifville doesn't do any good. I just can't believe how close it was. Sure we knew it at the time but now that it's all over and we're no longer in the position where we have to deal with it... Wow. That was a very close call.

Then again, we have close calls every day. Every time one of my kids gets in a vehicle they are one mistake away from death.

Ifville. It can be a fun place. It can be a tragic place. I used to have a place there. I sold it. I'm not going back to Ifville. Screw that place.

I hate cancer.

Wednesday, December 26, 2007

Happy Boxing Day! [Updated]

[Update]: Andy's ANCs are in the normal range!

It's been a nice, lazy day-after at the Kelley house. Andy went in for counts today. His white blood cell counts are over 9. That's normal! We're waiting for his ANC numbers still. That's the kind of cells that fight bacteria. That's the really important one.

If his ANCs are reasonable, he'll receive Neupogen for 2 more days. And that's IT! That means possibly only two more days of having to give him shots! Yay! He also wouldn't need to be seen again until 1/7 when he goes in for hearing test and CT scan.

Everyone, I had a blast! And so did you, I can tell! It's a shame we had to miss Sunday, but Joey, Emma, and I had a blast at the Key festivities on Monday, as did the rest of us Tuesday at our house for the Gambill / Kelley / Swederwdeaiywalefhnnasekl;thewo;iragjafwerqio34 festivities. Even Mommy let go a bit on Tuesday!

I was talking to one of my Kelley aunts on Tuesday and commented that I always thought the Christmas after losing Grandpa Kelley would be the worst Christmas ever. I never in a million years thought it would be the best Christmas ever! This was a very special Christmas. One that will not soon be forgotten.

Thank you all for doing your part in making our Christmas a special one.

Tuesday, December 25, 2007

Merry Christmas!

It's been a great Christmas! I'll let those involved comment and do all the talking. I'll just say this: Best Christmas Ever!

So... Everyone.. Comment. How was Christmas? Keys? Kelleys? Gambills? Jokersts? Swederskas?

Monday, December 24, 2007

Long (But Good!) Day

So after not sleeping last night we've had quite an exciting day. While we were waiting for Andy's blood to come upstairs I put him down for a nap. He polished off a bottle and we both slept for about 2 hours while his blood ran. Upon waking we were greeted with a ton of Cecil Whittaker's pizza (my favorite). Some Cecil salad too. Andy actually ate! It was a family who spent 2 Christmases there, so they now bring up pizzas on Christmas Eve.

One of the oncologists had his 2 kids there. Andy was very jealous. It was cute.

After eating the pizzas we waited another 10 or 15 minutes for his blood to finish. Then we came home! Yay!

OK'd per the oncologist, Andy stayed home with mommy and they both napped while Joey, Emma, and I surprised my mom by showing up at her house. She was soooo happy to see us. So we were able to have our Key Christmas! Yay!

Now I'm exhausted. And I still have presents to wrap. Julie and he sister wrapped a poopload of presents last night. I just have a few odds and ends left to get wrapped. But I'm exhausted.

And Julie's performing surgery on herself in the kitchen. She stepped on broken glass and the glass is still in her foot. I have a feeling this will end bad.

Merry Christmas Eve!

Christmas is a 2-day holiday. Christmas Eve and Christmas Day. Today is the first day of that holiday. So Merry Christmas Eve, everyone!

Andy is going to get a half unit of blood today. Hopefully it should be coming up soon. Afterward, they're talking about sending him home. Let's hope this happens. If it happens, I may take Joey & Emma to my mom's for the Key festivities. If it's okay with the doctors. I know Andy can't go, but we'll see how it goes.

I got about 2 hours of sleep last night, Andy got about 3 hours. I'm tired. I'm very very tired. The boy just wouldn't sleep.

He's passed out now. I'm going to do the same. If anyone wakes me up I'll punch them in the ear.

Sunday, December 23, 2007

Baby Steps

He's taking baby steps in the right direction. White blood cells are "up to" 0.98, but his ANC count is starting to go up finally. That's the type of white blood cell that fights bacterial infections. We were told that he's "on his way to being able to go home tomorrow." What this means is that it's not beyond the realm of possibility that we'll be in the hospital on Christmas.

Meanwhile, they're discharging kids left and right. The entire 4300 wing is gone home or about to go home.

Every day it's getting more and more difficult to wake up to the news that we're not going home today. If we're still here when Christmas is over, that news will be easier to swallow. I guess we should start making plans for spending Christmas in the hospital. Hopefully those plans won't come to fruition.

Every morning I dream that I wake up and learn that his white blood cells are way up and that we'll be going home. Sometimes it's as high as 7, sometimes it's around 4 but it's always good enough to go home. And it never fails, I always wake up after that dream and either look at the piece of paper to my left or go out and ask his nurse about his counts. And, well, you know the results.

Hey Lorraine. I like a million dollars! :) I got the cashews and I got the joke. I'll try not to eat them all in one sitting. Thanks for the cashews though! There is no better snack in the world.

Saturday, December 22, 2007

Counts Back Down

Not drastically. Then again, when you're already at 0.69, you can't get much lower. He's 0.62 today. Yeah. That means we're not going home today. All week long I've been telling people that we should be going home "tomorrow" and I can't see us being here any longer than "the day after." The problem is that every time "tomorrow" comes around, there's something wrong, either with his temperature or his counts.

So today I'm not using the word "tomorrow." When people ask when we're going home, I'm giving it a hard date. I'm telling them we'll be going home Sunday, December 23 with no more of this "tomorrow" crap.

It's getting pretty difficult to deal with the news every day that we won't be going home and that he will be feeling like Greg for yet another day. Oops. Sorry, made a substitution. He'll be feeling like crap for another day. Did I say Greg? Well, same thing.

Greg & Babs, how's The Land of the Deutch? Jason & Amy, how's the first Christmas season going as parents? Barry & Missey, how's Christmas in Chiefville? I bet your all doing great! I gotta say that, all things considered, we're doing pretty good. Andy's being inundated (sp?) with toys on a daily basis. Joey & Emma are being spoiled rotten. Mommy is nice and warm. I'm just enjoying the fact that my son doesn't have cancer.

So Mommy keeps trying to get out to finish her Christmas shopping. But every time someone comes over to watch the brats she comes up here instead of finishing her shopping. I wish I could help, but I can't. Joey & Emma just can't stay up here for long enough for her to do her shopping.

Hey Humane Society people... THANK YOU ALL! I'm not going to expand on it any further because I don't think you want me to. But thank you. Very much. We love you!

This has been a tough week on the 4th floor parents. I'm not sure what all has been going on but I've seen a lot of bad news being thrown around this last week. Or maybe I'm just noticing it more now because I'm not so preoccupied with Andy's condition. Of all weeks. I don't want to go into any more detail because... well, unless you're used to dealing with it. You don't need to hear it.

Spider Pig, Spider Pig. Does whatever a Spider Pig does.

Friday, December 21, 2007

Channel 5 + Basket of Hope + Andy Benes + Oz [Updated]

[Update] Yeah, he was on the 6:00 news. Actually it was the back of his head, the back of my head, and a profile shot of Benes. hehe. :) Pic attached (scroll down). I have one more of Andy with a few nurses but I need to get permission from the nurses in the picture before I post it. Also, I found out who Mickey Carroll is. He was the munchkin violinist. We now have a Mickey Carroll-autographed Wizard of Oz DVD too. ;) Check out how tall and how short compared to me. Funny!

Watch the Channel 5 news tonight for Andy! I tried to stay off camera because I'm fat and bald and not camera-friendly, but Andy got quite a few shots in (of on under beside). Basket of Hope brought Channel 5 and Andy Benes and Mickey Carroll, a Munchkin City resident from the Wizard of Oz (basically a short paid extra from the movie I think), up here to give presents to the kids. Andy got his picture taken with Andy and Mickey. That is, Kelley with Benes and Carroll. I should be getting the pic in my e-mail soon I'll post it.

We're Benes fans in the Kelley house. Always have been. He wasn't a Cy Young pitcher and he didn't win a world series like some of Andy's other Cardinals visitors, but he stayed in St. Louis after retiring and became a big part of the Cardinals organization from a PR perspective. We like him because he's good people. It was nice to meet him.

So keep an eye out for Andy (Kelley) on the Channel 5 news tonight! Not sure if it will be 5:00, 6:00, 10:00 or all three.

I Hate Chemo

I really hope I never have to go through it. I really hope nobody I care about ever has to go through it again.

Andy's counts are still way, way down but are starting to come back up. So the good news is that they're starting to come back up which may be our ticket home. But the bad news is that they're still way down. White blood cell counts are up to 0.69. Yeah. "Up" to 0.69. That's really bad. They may be low enough that he'll have to hang out another day. Usually they let him go when counts start to rise, but considering how low they are... dunno.

Remember the first time around how I started getting a little too used to hospital life? Almost dependant? I think it's starting to happen again. Getting too used to it here. Actually starting to like the security, the routine, etc. I think that means it's time to go home ASAP.

Work, by the way, is going well considering I'm in the hospital. I'm still having to unload a lot onto my coworkers, but at least I'm getting in 39.99 hours a week. Yeah, just barely 40, but still... Boy it's gonna suck having to make up all these favors to my coworkers.

I take that back. With him sleeping so much, I probably already have my 40 hours in. Working on a big project. Oh well.

The sleeping bear is awake. Time to go.

Thursday, December 20, 2007

...But the Good News is....

Ok, so yeah, the last post was pretty bad news. The good news.... Andy's oncologist came into the room with a big smile on her face, even though she's not the one on service now. She said she wanted to beat the oncologist on service to the punch telling us the news. She told us...

Wait. Nah. I'll let ya steam for a while, wondering what the good news is. I'll throw in some filler here. Andy seems to be feeling a bit better now. He had some Tylenol. In addition, I gave him some ice cream which he LOVED. He's starving his little butt off. The ice cream felt good on his mouth sores. It even numbed him enough that he was able to eat most of a hotdog! Ice cream. What a cure. Whoda thunk?

And to whomever said there are angels in the rafters at this hospital. Yeah. I like that. Good way of putting it.

This is nuts. Every time I turn around, some group is bringing Andy a toy, blanket, book, etc. It sux being in the hospital this time of year, but at least he gets a lot of goodies! Oh and you should see the gingerbread house from Friends of Kids with Cancer. It's amazing! We should post a pic of it.

Okay, I've tortured you long enough. The good news is that his AFP numbers are back. You'll recall this is is an indicator of liver cancer. Normal is < 10. He was something like 1.2 million when diagnosed. He's now 24! Yeah. 24. It should be < 10 in a month or so. This is really pointing to the fact that the cancer is gone and there will be no more chemo!

CT scan and hearing test on 1/7. Then another CT scan 3 months later! Yeah! Wow!

There's Always Next Year [Updated]

[Update] The new furnace is in and working like a champ! And I found a place to spend my tax refund! Mastercard! ;)

Andy's white blood cell counts are down to 0.4. That's low. Very very low. Low as in if there were no such thing as hospitals or doctors, he would probably be playing slot machines with Grandma Key in God's casino.

The Christmas festivities are out of the question for Sunday and Monday. We may be able to do our little thing on Tuesday with her family and my dad, but that's up in the air right now. It will depend on his counts.

There's always next year.

Wednesday, December 19, 2007

This Sux [Updated]

[Update]: Andy's white blood cell counts are 0.7. Normal is 7.0 - 12.0. Ouch. No visitors pls.

Andy's counts took a nose dive over the last 24 hours. They're bad enough that I cancelled a meeting I had at work today and Andy's not leaving the 4th floor at all. This is really making him mad. Every time we go past the elevators, he gets mad.

He'll probably need some blood either today or tomorrow. This chemo cycle is really kicking his butt. I'm glad we're in the hospital.

I would guess he'll be coming home Friday or Saturday. His counts should start coming back up Friday-ish. He'll be close to normal Sunday or Monday. This means we may possibly have to skip the Christmas festivities on Sunday. I really doubt we'll miss anything on Monday though. It would have to be really bad to miss Tuesday.

When Andy's not sleeping I'm holding him with his head on my shoulder. He really feels bad. It's very trying on me as well, emotionally. This is my baby boy. I hate seeing him like this. Yeah, I know he's cancer-free, but it hurts seeing him like this. Last time I saw him in this condition was in August or maybe early September. Yeah, he's that bad.

The new furnace goes in tomorrow! They'll be out between 7:00 and 7:30 to get it started and my dad said it's about a half-day job. I gave Julie some face masks to have them wear when they're upstairs if appropriate.

More later. I need to get back to work while the boy is sleeping.

Tuesday, December 18, 2007


So Andy spiked a mini-fever at midnight. 101.8. Some oncologists would say he has to stay another 24 hours, no ifs, ands, or buts. Some would say, "Well, you live close. Give him Tylenol and go home. Call us if problems." Some are in the middle. The one on service right now is a middle-grounder. It will depend on his counts. If they look good, he'll probably go home. If not, he'll probably stay. Considering we don't have heat at home, I'm not that crazy about the idea of going home.

When you were in college, or maybe high school, did you have an instructor / professor / teacher play the communication game? That is, everyone gets in a circle and the instructor whispers something into the student's ear to his left. That student then gives the message via whisper to the person on their left. Continue around the circle back to the teacher. It may have started out as something like, "It's chilly outside" and ended up as, "Nuclear winter is upon us."

My dad would have been the worst offender. He couldn't keep a story straight if it were tied to a ruler. But we love him anyway.

They didn't shuffle things around to get to our furnace today. They shuffled things around so that they could get to our furnace Thursday.

Ok I'm back. Had to take a break to talk to the doctor. The doctor asked my opinion. It hurt me to say it but I told him that between the 101.8 last night, him not drinking very much, and no furnace, I'd feel better if he not go home. So we'll be hanging out at least one more night. When I go home, I don't want to come back.

Hey medical people! Yeah you. I know you're reading. I have a question. The medium-sized child keeps burning herself. I think she's like me. I don't process heat until it's too late. I could touch a burning iron for a second or maybe even two before the pain registered. And by then, it's obviously too late. Is it possible that heat isn't registering in my spinal cord, being forced to wait for the brain? Is there a name for this condition? Any advice to keep Emma from hurting herself if she has the same thing? Could this also be part of why spicy food doesn't really bother me?

Back to work while Andy's sleeping. More later. If I feel like it. Missey, give the rugrats a big hug and kiss from me. Give Barry a pimp slap from me.

Monday, December 17, 2007

Brr! Yeech! Ouch!

Brr! It's cold in that house! Ok, not too bad really. Julie, always the handywoman, pulled the sheet metal out of the fireplace, hammered it flat, and replaced it. That seems to have sealed it enough that our gas fireplace is now working. The house is comfortable again. But I dread that gas bill!

Yeech! It's gonna cost $1350 plus tax to get a new furnace. Wait. Not yeech! That's a great deal! Plus a $250 rebate from the gas company that will go straight to the credit card company. Methinks there may still be a tax benefit as well, I'll have to do some research. But yeah, $1350 is a lot better than 4800, 3800, 2800, and 2450. Thank my father for doing the digging around and speaking the HVAC language.

Ouch! Andy broke a tooth! Those of you who know Joey know that he broke his two front teeth a couple years ago. Today Andy broke one of his front teeth. Not quite as bad as Joey's. And it didn't really seem to bother him. He broke it on the metal crib in the hospital room. Go figure. Anyway, they gave him Tylenol and a doc will look at it tomorrow.

I'm assuming they'll send us to the dentist. I hope it goes like Emma's last doctor's appointment. They rocked. (Yeah, I know you're all reading this, but I'm gonna brag on you anyway). Emma was playing with the dogs. One of the mutts accidentally scratched her face. It was bad enough that we needed a nurse and/or doctor to look at it. No problems. This was cool though. What's the number one concern here? Yep! The waiting room! Can't have Emma getting sick from the sick kids there and giving it to Andy....

They told Julie to call when she got of the elevators. So she did. They took her in the back door, straight to a room that hadn't been used all day, and got her out the back door. She never saw the waiting room or any of the sick kids for that matter. Great job Joey / Emma / Andy's doctor's office! (I'll let you throw out your own advertisement, I'm not naming names)

So anyway, hopefully we'll have a similar experience at the dentist's office. Actually, now that I think about it, they may be able to just look at it and say it can wait until his counts come back up.

So far so good with Christmas. We'll see how his counts are. As of right now we're being told that we don't have as much freedom as we originally thought, but as long as nobody's sick, we can do the family stuff. It's all going to depend on his counts.

So I was thinking. I have an opportunity to do some good for the world. I can save a small portion of a landfill. Rather than tossing the old furnace, I have a more eco-friendly idea. We'll feed it to Loogie! You remember, the dog that will eat anything? Not chew, but eat! Yeah! So within a couple of weeks, he should have the whole thing consumed. He will then "pass it" and return it to the earth in a more natural way. Thoughts?

Back to the boy, Andy should be going home tomorrow (Tuesday). Hopefully in the morning. He's not hooked up to his IV tonight, so it's been a fun night. That really helps his mood, not being hooked to an IV.

Every time someone leaves the house, Emma says they went to Neendy's hospital, Neendy's doctor. It's actually pretty sad if you think about it. And Joey is now telling people that Andy has no more chemo, that he's done with chemo and therefore is almost done being sick. That, too, is sad. What four-year-old is even supposed to know the word "chemo"?

Wanna talk sad? I counted 5 new families in the last 7 days. Yeah. 5. I think one is terminal. Or maybe just the parents are extremely emotional. Wasn't a pretty site though. Then again, I remember a big group of family, friends, grandparents, aunts, uncles, etc. who were pretty torn up and full of tears when they found out about a little baby with a hepatoblastoma. And we all know how that one turned out! (or is turning out anyway)

If you've ever brought your kid to the Glennon ER, you know what a pain in the butt it can be during peak hours, especially if it's not a huge deal. Tell ya what, though. They know how to treat their chemo kids. Every time we've had to go to the ER, I tell the receptionist that he's Andy Kelley and they immediately get him back to a triage room. You can imagine how busy the place was last Saturday with the snow! I figured, "ok, they'll stick us in a room and this will take hours."


Despite the huge, crowded ER waiting room, they took no chances with the little guy. He was immediately seen not only by a nurse, but by an ER doctor. His port was accessed, they sucked his blood, and started his antibiotic, all in 1/4 the time it would normally take just to get registered! Not only that, the nurses really knew how to handle him, his port, the fact that he's a chemo baby, etc. This was the first time we've come in during peak hours like that. I was extremely impressed!

Speaking of having his blood sucked, all blood cultures are still negative. And we should find out his new AFP numbers very soon. Good and good.

Hmm... That's it for the random neurons firing for one night. Nite all!

I Should Have Known

This is what I get for starting to get a little too happy with the way things are going. Andy's back in the hospital as you know. Going to be at least tomorrow before he gets home. But that's fine because Julie and the kids woke up to a 57-degree house this morning and it will be worse tomorrow. Our furnace is dead. We need a new one.

Oh well. We'll figure something out. We always do.

Sunday, December 16, 2007

Don't Count Your Chickens....

...because if you do Greg will eat them. He likes raw chicken. Raw chicken flavored Munchos ground up inside of a huge slice of quiche.

So here we are in good ol' 4200. Andy was generally fine most of the day, running in the 99.x range. Around 5:00 or 6:00, something like that, we noticed he was a bit warm. 102.0 to be exact. That put us here. And he's pissed.

24 hours, I'm sure. You know the routine by now.

My dad came over today to look at the furnace. Pretty scary when the expert is stumped! That's like taking your car to a mechanic and he says he's not sure what else to do. Not good. Fortunately he thinks he figured it out. No, he's sure he figured it out. We should have a nice and toasty house again tomorrow.


Saturday, December 15, 2007

Another "Last"... Hopefully...

It's 9:00pm. Just got back from what will hopefully be our last trip to the ER. For those of you not in the St. Louis area, it's snowing. Bad. The drive home was horrible. I can't imagine what it would have been like if I didn't live just a few miles from the hospital.

For those of you assholes with 4WD who say, "You shouldn't be on the road if you don't have 4WD" and get all over my tail.... Get used to it. Sometimes we need to be on the road. For God's sake, my son has cancer and had a fever. I had no choice but to be on the road. You're a bunch of @#$*()@#s who think you're the only person in the world. Piss off!

So we noticed Andy felt warm. But he was acting just fine. Took his temp it was 101.6. Took it again 30 mins later and it was 103. By the time we got to the ER it was 101.4.

His white blood cell counts are down to 1.8. That's low. That's very very low. The results of his differential were such that he was allowed to go home tonight with the understanding that if he has a fever tomorrow, he's getting admitted.

As per usual, they loaded him up with some intravenous antibiotics that should take care of anything. Blood cultures, etc. etc. etc.

Hopefully this will be our last ER visit. Next time I take a kid to the ER they better have a broken bone!

Greg Has Pica

Warm again. Pain in the butt system. You know why I don't know anything about cars, HVAC, and general handyman kind of stuff? It's not that I'm incapable. I spend every day of my life troubeshooting stuff and it's very frustrating. I get enough of that kind of stuff. Leave this to the pros.

But at least we're warm.

Neendy is feeling much better than he was after the last chemo cycle. It's akin to the second round last time around. Not great, but much better. His eating is getting a little better today.

Neupogin starts again tonight. Yeah that's the shot. Andys counts are steadily falling right now, but like I said he seems okay.

So what's going on, am I going to post here indefinitely wth no updates about Andy just making fun of Greg and offending as many people as possible? Yes and no. Yes I'll continue to post about whatever I want and pick on Greg relentlessly. No it won't be here. There will come an end to when the time is right, probably in a month or so. The Greg picking-on will continue, but on a different website. Those of you who care can come by, those who don't can go screw yourself. :) I just find it weird that you like my writing. It's very me-centric on so many levels. The only person who should really be interested is me. But oh well.

I like me. Greg likes quiche. The world continues to turn.

Snow Sucks

For once we were actually looking forward to snow. Nowhere to go, no biggie.

Then we get up this morning and find out that our blower motor isn't coming on. Turns out there's a short somewhere in the system. Our house isn't cold, but it's not warm. Having an emergency call would pretty much mean the end of Christmas... no more presents. Or we can wait for the snow to melt and get my dad out here.

But I don't care because Andy doesn't have cancer anymore! Everything else is a minor annoyance.

So we'll see how it goes. If it stays reasonable in the house we'll wait until the snow melts. If not, we'll make the emergency call.

Friday, December 14, 2007

We're Home! For Good!

Yep. Home for good. Well, technically he could get an infection and have to go back... But we won't let that happen.

The last day in the hospital was surreal. The last day of chemo. Everything was the last. The last time I have to put him to bed at night and let him scream himself to sleep. The last night nurse. The last 8:00pm vital check. The last midnight vital-check. The last 4:00am vital check. The last time waking up in the hospital. The last nurse. The last shower. The last ride around the hospital in his little car. The last chemo. The last discharge and walk out to the car.

The first day of his new life.

It would appear as though God has a special place in his heart for Andy.

WBC Counts Down

Andy's white blood cell counts are already down. Let's limit visitors to grandparents only. Even when we get home. We want the little stinker healthy for the holidays!

I talked to Andy's doctor today about a few things that I've been meaning to ask but keep forgetting. First and foremost, he should have no long-term liver problems. He should be able to take Tylenol when he hurts. He should be able to party it up on his 21st birthday. In other words, he should be completely normal.

Second is his walking. She said she is not concerned at all that he's not walking. It's normal for kids going through chemo to stop development then catch up. If he's not walking by the end of January he'll go to physical therapy. No biggie.

Third is his AFP numbers. They still aren't back. But apparently they won't be at zero, closer to 25 or so. Whatever. We'll see.

Chemo is at 1:00 today, then he gets to go home! Forever! Yay! We're so excited! Very very very excited!

Andy's feeling pretty crappy right now so I'd better go tend to him. More later.

P.S. Greg. You're Kanadian. Deal with it.

Thursday, December 13, 2007

Wow! 3 Posts in One Day!

It's been months since I've had 3 in one day! Greg, I bet you can't utter those words without lying!

With any luck, this should be Andy's last night in the hospital. Ever! You'll recall he had a pretty rough night last night. Because of this I let him take a nap after his party today. He and I both napped pretty hard from 4 - 6. His normal bed time is 7, or 8 at the latest when in the hospital.

My mom and stepdad showed up around 6:30 after Andy didn't eat any of his dinner. He enjoyed being with his meemaw and pawpaw. He ate some leftover pizza for meemaw, so that's good.

Finally he went to bed around 8:30, maybe 8:45. He's sleeping very lightly right now, so we'll see how this goes. I really hope he doesn't throw up tonight. I should be used to that kinda stuff by now but I'm not. It bothers me. Just like the neupogin. I should be used to giving him shots, but I'm just not.

With this being his last night in the hospital, I've been thinking a lot today. It started at his party. The floor manager (title?) asked us if it went by fast or slow. It went slow for Julie, fast for me. Someone else noted that it was nice to see us with all smiles this time, last time he saw us it was quite the opposite.

So yeah, it got me to thinking about a lot of things. I was thinking about that horrible first day here. I was thinking about how that night when I couldn't sleep I decided to start this website as a way to put down my thoughts.

Today I watched a nurse giving a parent the tour of the floor as the parent watched, only half paying attention, with a look of horror on her face. It doesn't seem like that long ago that I was that parent.

Speaking of which, it was weird saying goodbye to some of Andy's nurses who have been with him a lot since the beginning. Ok I'll say it, it was sad. I took my usual walk down to the atrium and lay down on the fake leather couch for the last time. Sure we'll be around and we can come up and say hello, but it's not the same. And I think I'll actually miss my little walks to the atrium at 8:00, 9:00 or 10:00 at night. It used to be I'd go down there to lie on the couch, stare at the ceiling, and not think about the situation. It was therapeutic.

I also noticed something else today. I saw a dad who had adjusted. You'll recall I made an introspective post a while back. Basically I was quoting a song that seemed to fit my mood at the time. I mentioned that I overheard a mother telling her son that he has leukemia and having to explain to him that there's a small chance it could kill him. That son's father reminded me of myself during those first few days. Well, it's been a while. Dad has adjusted to the changes, I can tell.

I remember when that happened to me. It was like a calm came over me all at once. It wasn't an "everything will be okay" calm. It was more of a "this is happening" calm. Time slowed down, everything was in perspective. I remember the moment it happened. I was forever changed after that moment. I'm not sure when it happened to this dad, but I can tell it happened. It doesn't happen to every parent. You can see the parents who have had that epiphany though. Or maybe you can't. But I can. It's about half of the parents.

Someone mentioned today at Andy's party that he couldn't remember what Andy looked like with hair. That got me to thinking about when we noticed Andy's hair coming out. As a parent you can't prepare yourself for that. It hurts to run your fingers through your child's hair and pull it out in clumps, knowing it's because of chemo. That's why we shaved it. We saved ourselves a lot of pain by doing so. Also, he's dead sexy as a baldie, don't you agree? He looks a lot like his Grandpa Key, I'd say! You can really tell now that he's bald. Of course that's not the reason he looks like Grandpa, it's just easier to see. I know it bothered my grandpa, but he was one of the 25% of men that made bald look good, whether he wanted to admit it or not. Bald wasn't as cool back then as it is now though. Cool baldness is fairly new over the last decade or so.

Speaking of Grandpa, I was thinking about Grandpa Kelley's passing. I still haven't had a chance to grieve which means there's still some unfinished business. But at least the pain has subsided a bit. Probably in no small part due to the anti-anxiety meds my doctor put me on of in at. I gotta tell ya though, I still have the phone in my hand every Friday ready to call him. Not because I forgot that he's no longer there, but because... well... because I want to on of in at.

My wife, my kids, and I are now all much closer than ever. My wife and I flirt with each other again, hold each other in our arms while lazing on the couch watching TV, and truly can't stand being away from each other. It's like we're 16 and dating! My kids all love each other almost like Wally and the Beav. Sure they fight a bit, but nothing like they used to. It's like the sibling rivalry is on hold, or at least has subsided. Emma's attitude has improved ten-fold. I don't know how to describe our family situation. It's weird. Almost too good to be true.

They sucked some blood to get AFP numbers. They should be getting closer and closer to zero. Apparently AFPs have a long half-life, so that's why it's not all the way to zero yet. For some reason I'm a bit nervous though. What if the AFP numbers are up? Then what? Did I jinx myself by thinking this was almost over? I dunno, we'll see.

Ok, enough for one day. Andy is awake again. Here we go.

Pics from the no more chemo party coming soon! Sometime this weekend, anyway.

No More Chemo Party

Wow, 2 posts in one day again. :)

Andy's "No More Chemo" party was fun. Tons of pizza and sweets! Joey & Emma had a good time. The 4th floor staff sang "No More Chemo" to the tune of "Happy Birthday." They gave Andy a t-shirt with a No Chemo sign on the back. You know, like a no smoking sign, only no chemo. They also have him a cool little congratulations plaque kinda thingy that all of the 4th floor staff signed. Probably easier to just take a picture of it.

Pictures to follow! Thank you to all who are reading who participated!

Another Day in 4301

Wow there are readers all over the place. I'm assuming that when we have our big "Cancer Sucks!" party when this is all said and done, there will be a bunch of people at my house who I don't even know.

Lemme preface what I'm about to say next. If you have kids you know already. If you don't, then you can't possibly understand. You may think so, but you can't. Trust me. You know how strong the desire is to eat? No, let me take that back. You know how strong the desire is to breathe? That's how strong the desire is to protect the next generation. I'm not exaggerating. Millenia of evolution has programmed it into us. Knowing that your child is sick with a life-threatening illness is one of the worst things imaginable. Knowing that it will, in fact, take your child's life.... That is the absolute worst.

With that shoved down your throats, I was going to mention that I talked to a mother in the Costas Center yesterday. I don't want to name too many specifics, but she has it tough. She had cancer and is now in remission. She has lost multiple immediate family members to various forms of cancer. Now her child has cancer. And she has the same illness that my cousin had. She asked me how my cousin is doing with her illness and I felt weird telling her that cancer took my cousin from us. Her reaction was less than positive. Yeah, the survivor's guilt is getting pretty bad now.

So back to the little stinker. Last night was rough. He hasn't been sleeping well anyway. Add nausea to that. I thought he was going to hack a few times but he never did, fortunately. He probably didn't really get to a nice deep sleep until about 1:00 or 2:00 in the morning. He slept until 10:00 this morning.

But at least this is the last time.

Andy's "No More Chemo Party" has been moved to 2:00 today. So we ate a late breakfast. Should all work out.

Andy will get more chemo today and more tomorrow. Then that's it! No more! w00t!

Wednesday, December 12, 2007

At Least it's the Last Time

So we got to the hospital at 8:30am, as scheduled. We were, of course, waiting on the pharmacy for the fluids. By around noon he was accessed and had his IV fluids running. Finally around 2:30 we got to our room, 4301. So basically from 8:30am - 2:30pm I spent my time trying to keep my 16-month-old happy. Not an easy task, especially when he's tired and hungry. So why couldn't we have just come up to the hospital at 2:00? Oh well. At least it's the last time.

During this time though we got our picture taken with Santa and Andy got a little present. That was pretty fun. I talked to an employee of the hospital who has apparently been following along with the website. It's weird just how many people are reading this and pulling for the little guy. Thank you all!

Andy will have a "Last Chemo Party" tomorrow at noon on the floor. We were just going to bring up some cookies but apparently there's a group that brings in pizzas and goodies. That should be fun. I'm SO glad this is the last time in the hospital. Have I mentioned that? :)

So finally around 3:00 I called Julie and told her we need to switch off for a while. I haven't been able to get a single minute of work done today. So here I am. I'm at home she's at the hospital. I'll get some work done now.

More later.

Monday, December 10, 2007

Not in the Hospital

Yeah, you read it correctly. We're home. After spending all morning in the Costas center, we're back. There was a miscommunication last Friday. Andy's nurse was out of the office that day and nobody called us to say no Neupogin. We didn't even think to ask. Bottom line, they can't administer chemo until he's been off the Neupogin for 24 - 48 hours. Something about how they don't want to kill the activated cells. Dunno.

The silver lining is that according to his counts, he may not have been ready to come off the Neupogin Friday anyway.

So we'll be going back Wednesday. We'll be in the hospital Wed, Thur, & Fri.

What does this mean for Christmas? Hopefully nothing has changed. Remember when I said that Christmas Eve falls on the first day of the 3rd week of the chemo cycle so that should be a good day? I fudged a bit. Historically speaking it's the Friday before that his counts come back up. That should coincide with somewhere around Sunday or Monday. This means we should still be able to have a normal Christmas. Yay!

So there ya go. We're not in the hospital. We'll be there Wednesday. The good news is no Neupogin the next couple of nights. That's the shot that we have to give him.

Sunday, December 9, 2007

It's Cold Out There

Ask Emma what it's like outside and she'll tell you. "It's cold out there."

She's really learning to talk well. She loves saying, "it's cold out there." And it sounds so cute the way she says it.

Patience calls her poop squeak, to which Emma responds "beerbeer." Nobody knows what beerbeer means. Walk up to her and say "Poop squeak!" She'll smile and say "Beerbeer!" again in a cute voice. Or say "Beerbeer!" and she'll respond with "Poop squeak!"

I see Greg's back at his antics again. Manpurse-wearing Kanadian quiche-flavored Muncho freak.

So tomorrow Andy goes back to the hospital for 3 days of poisoning. I realized today, as did Julie, that he has no appointment setup. I'll call in the morning.

This SHOULD be Andy's last inpatient visit to the hospital. It will also conclude his chemo! I'm thinking we'll get some cookies or something for the 4th floor nurses and families in honor of Andy's official "No More Chemo Day." I've watched other kids have this day and have silently wished for that day to come for Andy. Yay!

If everything goes as planned, here's how things should shape up. Tomorrow, Tuesday, and Wednesday he'll receive chemo and will be released to come home sometime late afternoon / early evening Wednesday.

Friday and/or the following Monday he will go to the clinic for blood counts. Same thing the following Friday. By this time his counts will be back up... FOR GOOD!

I think there's one more CT scan in there somewhere. I know there's one more hearing test in there somewhere.

Also somewhere in there he'll go back under the knife to have his port taken out. Oh by the way, they'll fix that hernia which is what started this whole thing (see the first post).

Friday, December 28 the nightmare should be over for all intents and purposes.

At some point we'll talk about a "Cancer Sucks" party that will probably involve at least 2 kegs and a very crowded Kelley house. But we don't want to jinx ourselves and start planning this just yet. But just know it's in the future and be prepared.

So we now have some new neighbors. And I think they like to party. I fell asleep last night to the sound of very loud music. I couldn't tell if they had it cranked up or if it was live. I do know that they're drummers or something like that so it was very possibly live music. It feels good to not be the loud one on the block for once. :)

Hey Brockleycrap. I have 3 words for you: Poop and pee!

Saturday, December 8, 2007

(offtopic) Alcoholic Kanadian Fans with Pica

Stupid fan. My dad (an electrician) redid the electrical wiring in the fan. He said what I had was okay, but he made it better. Ok cool. Then we hit the switch. Nothing happened. Yes ladies and gentlemen, the fan has a screwed up motor from the factory. We quickly attached the other fan and it worked like a charm.

My dad said not to buy anything from Home Depot because it all comes from Kanada. Hah.

While he was over here he was talking to his girlfriend on the phone who is apparently very gullible. He told her that Emma has pica, Joey has tourettes, and Julie wakes up at 7:30am and immediately goes for a bottle of tequila.

He kept saying stuff like, "Emma, quit trying to eat the phone!" She sent him some websites about pica and tourettes. Regarding Julie, she told him to let it go and let her bottom out.

That's funny. Of course Emma doesn't have pica, Joey doesn't have tourettes, and Julie's not an alcoholic. :)

Loogie, on the other hand, has pica. My dad called me laughing because she sent him some links on pica. As he was reading about pica, he stopped and said, "Louie, stop eating that!" He turned around and Loogie was eating his rocking chair.

Andy's being a royal pain the p'tooer.

Friday, December 7, 2007


No comments? Am I getting that boring? Nobody has squat to say?

Thank you Suzanne for the link and info for Julie's geneology studies! I appreciate it! Everyone say it with me. 1... 2.... 3... Thank you Suzanne!

I don't know what the f@!# I was thinking. I took Joey with me to Home Depot to get lights for our ceiling fans and to Glennon to get Andy's Neupogin. It didn't dawn on me until a kid in line behind us sneezed. Of course we carry Purell, but still. It scared the crapula outta me.

They upped Andy's Neupogin. 0.15 instead of 0.13. Remember Neupogin is the medicine that we have to give him sub-q every night. It's the one that keeps (or attempts to keep) his white blood cell counts up. I dunno if they upped it because he's a bit bigger or because the newer chemo is more intense on white blood cells. All I know is that one of the side effects of Neupogin is bone pain and I think it does cause some pain in Andy from time to time. But oh well, it's almost over.

Speaking of drugs, Andy is on Zofran for nausea as needed. It's an excellent nausea drug. Last time we filled the scrip, they gave us like 4 bottles, I guess to keep the copay down. This will probably leave us with 2 or 3 extra bottles when all is said and done. I e-mailed the social worker at Glennon to ask if we can donte it. I doubt it, but it's worth asking. It is extremely expensive if you don't have insurance.

Greg is infested with fleas from a camel.

Now if you'll excuse me, I need to go kick my daughter's ass.

Thursday, December 6, 2007

Exposure Risk Time

So yesterday was the first day of my being concerned about exposure. Sure his counts are fine now but in a week they won't be. 7 - 10 days for a bug to start showing symptoms, blah blah.

I've told the mutts at work that I won't be around for another 2 - 3 weeks. Even had to pawn off a small miniproject on a cow-orker (moo). Yet another favor I'll owe. But really the last place I need to be right now is a hospital. Not worth the risk to do something so minor.

Purell Purell Purell.

Speaking of Purell, many of you seem to think that will always be a habit. SCREW THAT! I hate the stuff! I mean it certainly has its uses and it will always be in the house just like it's always been in the house. But Purelling every time I touch something metal? Or every time I realize it's been more than a couple hours. Screw that. It sucks. My hands feel like they're on fire.

Chemo is Monday! Last weekend of peace.

obtw, I got the fan hung in the dining room today. There's still a hole in my living room. :) Of course nothing happened when I hit the switch. But that's for my dad the electrician to figure out. I'm assuming I used the wrong size wire nut or something.

Julie's very interested in tracing her family history. She looked at but they wanted like $15 a month or something. Sux. Anyone have any suggestions?

Barry & Missey... You're not Chiefs fans now, are you?

Wednesday, December 5, 2007

Stupid Fan

Our Christmas present to ourselves was new ceiling fans for the living room and dining room. $25 / month for the next 12 months with 0% interest, can't beat it.

Ok, so anyway, I get the old fan off in the living room. That's the fan that was leaning to the side. It turns out that it was leaning to the side not because of bad fan installation but because of bad outlet box installation. You know, the blue box up inside the ceiling.

I should have known with this house. It sure seems that a lot of the improvements made to this house were done so on the cheap and not always exactly done right.

Fortunately my dad is an electrician. He'll be coming over this Friday to look at the box and take appropriate action. Until then I have two exposed wires hanging from my ceiling. They're not live, but it's the idea. It's trashy.

I'm not even going to take the one off in the dining room until my dad gets here. God only knows what I'll find up there.

Oh, and to whomever said "But you may have already done that" (Jason I assume?), ya better watch out or I will do that. All I have to do is root for Mizzou instead of Arkansas! (but of course I would NEVER root against Arkansas!) :)

Crap weasel.

Tuesday, December 4, 2007


Thwack-a-Cow is a fun game. It involves walking up to Gracie the mastiff (aka "The Cow"), holding your hands in a certain way that it won't hurt her , and thwacking her in the shoulder. Do it right and it just annoys her but doesn't hurt her.

Wow. 2 posts in one day. Been a while since I've done this.

Chemo sucks. Andy got a little cut on his nose a week or so ago. Not even beginning to heal. It shouldn't be a big deal at all but with chemo... jeez...

I think I've managed to piss off the Kelley side of my family, just in time for the holidays. But oh well. Haven't we learned by now that if the world would just listen to me it would be perfect? :)

Oh by the way. Remember Loogie the dog with pica? Today he ate a mailbox. And it wasn't his own. heh

I'm trying to remember why I made a second post. Was it to remind you that chemo begins next Monday? Maybe. If I think about it I'll [update].

I'll leave you with this last thought: Most Keno players are escaped mental patients from Kanadia. You figure that one out on your own.

No Real Updates

I forgot to mention that Neendy (that's how Emma says Andy) had his ABR yesterday. No real changes since the last test. His hearing has stayed pretty much the same.

It takes a lot of sedatives to get him down. The anesthesiologist was concerned. He was receiving such a heavy dose that he was essentially receiving general anesthesia without a trach.

He's continuing to gain weight at a steady pace. That's a good thing, and I'm not paying Martha to say that.

But yeah, no real updates. This is the 3rd week of the chemo cycle which is kinda the honeymoon week. Counts are up, nausea and pain are down, life is pretty good for Neendy this week.

Emma just farted and blamed it on Joey.

I was going to go into the office today until I saw an e-mail from a cow-orker (moo) saying that he was going to stay home because he was feeling sick to his stomach. Because the rest of my cow-orkers have been around him I couldn't go in.


Cancer sucks.

Monday, December 3, 2007

Random Neurons Firing

In exchanging e-mails with a friend, a few random neurons fired. These are thoughts I'd like to share.

First of all, don't try to put yourself in my shoes, Julie's shoes, or any parents of cancer kids. Just don't try. Especially if you're a parent. I know this is easier said than done, but please don't try to put yourself in our shoes. When you're in this situation, you deal with it in a way that I hope to God you can never understand. Because to understand it you need to be in this situation. And I hope you're never in this situation.

We deal with it. Yeah I know how worked up you get when your kid gets a cold. I know how helpless and heartbroken you feel when they give you that look like, "Help me! Do something!" And I know that you're trying to relate that to how I'm feeling with Andy. I know this because I've now had 4 people tell me this. But ya know what? We deal with it. We have a different perspective on these things.

Don't tear yourself up over it.

Another random neuron firing... Survivor's guilt. I now have a hard time talking to people whose kids have cancer, especially if they're terminal. I didn't have this problem a few weeks ago. The tumor is gone and chemo is almost done. Andy's pretty much kicked this thing. Now it's time for survivor's guilt. I'm sure it will pass but it's there.

Audiogram today. He seems to be hearing fine, but we'll see. Since the boy now gets paradoxical reactions to chlorohydrate, this will involve an anesthesiologist as well as some heavy sedatives. *sigh*

Sunday, December 2, 2007

Happy Birthday!

December 2nd. Happy birthday Greg! Happy birthday Evan! This would have been my grandpa Kelley's birthday. It also would have been my aunt's birthday who died long before I was born when she was a child.

The Rams game was fun. Unfortunately half the crew either caught a cold or has been around someone who was very sick recently. So it was just my father-in-law, a bottle of Purell, and me. It makes me very nervous being around all those people. Sure his counts are up now, but it's still scary. I remember when I went to Tucson. The thought of having to breathe that dirty airplane air. Normally it doesn't bother me, but the idea that it could possibly be fatal to my son....

The Rams played a great half of football. For some reason those guys just can't seem to play 4 quarters of football. Fortunately they got enough of a buffer in the first half to squeak by the dirty birds.

Andy's audiogram is tomorrow. We'll find out what the latest round of chemo did to his hearing. :-/

A direct quote from Greg: "When was the last time you saw a straight man wear a man-purse?" Greg loves his man-purse. He wears it often. And the quote is directly from him, I didn't change it.

Sorry, I shouldn't pick on Greg on his birthday.

Yes. I should.

You suck Greg.

Saturday, December 1, 2007

Greg Smokes Crack out of Exhaust Pipes

Last night was a pretty good night. My mom & stepdad came over since Andy's counts were ok. They brought chicken. Always good to have chicken!

We took advantage of their babysitting services and took the long 7-block trip to my brother-in-law & sister-in-law's house. It's a nice place. Good ol' city home, ya know? Like us, though, they actually have a backyard. That's unusal in St. Louis city.

I was helping Dweeze move some guitar equipment in when a jam session broke out. Next thing I know I'm over at Dweeze's house drinking HIS beer (haha!) having a jam session. Then I realized that for the first time in 11 or 12 years I'm walking distance from Dweeze's house. This could get ugly. :)

Andy's still feeling up and down. Imagine not only having a cold but having a cold while on chemo. It's not fun. Makes ya feel pretty crappy.

I think I may take Joe & Emma out to lunch today. Just because Andy's counts are up, ya know? Get them out for a bit. May be good.

Maybe we'll crash Dweeze's house. Yeah, that'll be fun.