Friday, August 31, 2007

We're Home!

Nevermind the earlier message. It wound up just being a setback of a few hours. We're now home.

We're Going Home, Redux

Andy's looking fine and feeling fine. The 1 mL of Oxycodone seems to be helping. He finally had a poopy diaper.

What's this mean? It means we're getting his Vinchristine and we're outta here.

His counts are still up, which means grandparents, you're welcome to come by this weekend, either today, tomorrow, Sunday, or Monday. Aunt Lauren & Uncle Ryan are also welcome. Anyone else.. well.. sorry. Not until the next chemo cycle. :(

We will be having Emma's 2nd birthday party this Sunday at 1:00. Because of chemo, we can only have Grandmas, Grandpas, God-Parents, Ryan, and Lauren.

Day 23

Andy's doing great. I think bumping him up to from .5mL to 1mL of Oxycodone was a good move. That seems to have taken care of his problem, and that's still within his dosage given his weight.

Andy will receive Vincristine today, officially ending the first round of chemo.

I expect we'll be going home today, and by tonight I will be sitting at my computer, playing Tiger Woods Golf 2007, drinking a Killian's Irish Red.

I took off of work today. Too busy of a day with goings-on at the hospital with Andy. I put in quite a few extra hours last night and should be able to top off the remainder later this weekend. God love my manager for letting me get away with doing things like that during this trying time. My boss and I used to go back and forth a lot, we had some differences of opinion for a while. Slowly over the last year, we've begun to be able to see eye-to-eye a lot more. He's turned into a great guy to work for. (He doesn't read this website, so I can say this stuff without being perceived as sucking up) :)

Andy's sitting in his bed playing. I walked out to get some ice and came back in to him waving at me, saying hi, then saying dadadada. He's really back to himself.

A word on charities...

I'm normally on the "giving" side of charity. It's quite an adjustment to being on the "receiving" side. I can't wait until this is all over so I can get back to being on the "giving" side of charity. It's a much better feeling.

United Way time is coming around at work again. You know, the charity that your bosses guilt-trip you into giving to so that they can make their goals and look good to the public.

If you donate to the United Way, I would urge you to fill out the part of the form that you can give to a specific charity. Namely, the American Cancer Society. However, I would rather you take the money you would have otherwise given to the United Way and give it to Friends of Kids With Cancer, Basket of Hope, St. Baldrick's, National Children's Cancer Society, Cardinal Glennon Children's Medical Center, or anything else that will help, in particular, children with cancer.

I have nothing against the United Way. What they do is great. I have to say, though, that I do not like the way they campaign in the workplace and the way that many employers (mine is NOT one of them) pressure you into giving. Give to the United Way if you wish. However, I'd just rather see that money go to something more specifically aimed at helping kids like Andy.

And speaking of charities, we'll be sending out appropriate thank-you cards (all 10,000 of them) when this is all over. And to all of the charities that are helping us, we'll give back when this is over. And to all of the friends and family who are helping us, I know you won't let us give back, but we'll find ways to give back.

After I posted yesterday, in regards to my grandfather, I realized that I need to just take that hit when it comes. I was worried about my grandfather before this with Andy, I can't afford to take it on again with this going on. If anything derails me, my family will fall into chaos and I just can't have that. I like to take some credit for the fact that my wife and my other 2 kids are all keeping their wits about them and are still leading somewhat normal lives given what's going on.

Thursday, August 30, 2007

Another Shot to the Chin

Ok, lemme preface this by saying that in 2006, I lost 2 grandmothers, 2 cousins, an aunt, and a good friend. This is all that popped into my tired brain right now, I'm sure there's more to add to that list.

Over the last couple of years I've grown very accustomed to death. Just when I think nobody else can die, boom! Someone else I care about dies! Some of them were a long time in the making, some came from out of nowhere.

Lately things have not been going so well for my Grandpa Kelley. On one hand, the man is 81 years old. On the other hand, despite everything that happened in 2006, I thought he would always be here. I don't know why, I just did.

Screeech! Backup a bit further. I don't want to go into great detail, but let's just say that the man is the reason I am the person I am today. For better or for worse, I am who I am because of him. Grandpa Kelley and I have always been very, very close. Expect a very, very long post at some point in the future explaining my relationship with Grandpa Kelley.

Again, I'm not going into great detail. But as I was finally falling asleep an hour or 2 ago for the first time since I woke up 31 hours beforehand, I got a call saying that he has less than 3 months to live. *Edit* God love my father, he just can't seem to get anything right when he tries to repeat things. Nobody ever said anything about 3 months. The truth of the matter is that he has "months" to live, be it 1 month or 15 months.

And there's no room for grief right now.

I sure wish life had a rewind button.

No calls, no visitors, please. I need a few days to myself. I may take a few days off from the entire world, including this website.

Except, of course to work. *grumbles about not being able to use EMTO*

Hello Me, it's Me Again

We're back in the hospital. In fact, we're in 4302. That room sound familiar?

Ok, so here's the whole scoop.

Andy showed signs of pain on and off yesterday. Possibly the port re-access from the night before, or possibly the intermittent pain from the Vincristine taking effect, or possibly he's building a tolerance to Oxycodone, or maybe his surgery wounds are still aching. My guess is that it's all of the above.

He really started getting fussy around 9:00pm. His temp was hovering right around 99.7-ish, so I started paying closer attention.

Finally at around 11:00 when he wouldn't go to sleep I called the on-call oncologist. He said to give him more Oxycodone. That did the trick... for a while.

Because of what was going on, I took his temp at midnight then again at 1:00. By then he was still sleeping and his temp was in the normal range (less than 100), so I decided to go to bed. Since Joey was passed out in my bed with Julie and Julie went to bed with a massive headache, I decided to just sleep in Joey's bed. Joey & Andy share a room.

As you may or may not know, it's not easy for me to get to sleep. I finally fell asleep around 1:50.

At 2:00, Andy woke up crying. I changed his diaper. He became inconsolable. Screaming, crying, he was in pain. His temp was 100.2. That was my cue. I called the oncologist, he said to get him to the ER.

A $50 ER co-pay, 8 (yes, EIGHT!) wet diapers, 1.5mL (yes, one point five mL) of Morphine, 4.5 hours, and a LOT of screaming later, we're back here in good ol' 4302 with all vitals back to normal. Andy is FINALLY sleeping.

And nevermind sleep, it's time for me to get to work since I'm so low on PTO, can't afford to take off work without pay, and won't have time to make up these hours. *grumbles about not being able to use EMTO* I guess I'll sleep tonight... hopefully.

* EDIT * Please do not call the room before 10:00 this morning! I don't want the phone to wake Andy.

Wednesday, August 29, 2007

Day 21

Not much to report today. Doctor's appointment went well. He's looking good. His counts are dropping, but are still in decent shape. That said, we shouldn't have any visitors for the time being.

He will be getting his Vincristine at 1:30pm this Friday.

Next Thursday, 9/6, he will be admitted for his Cisplatin, which begins the next cycle of chemo. He'll be released Saturday, 9/8.

If we're going to have a grandparents-only birthday part for Emma, it will have to be Sunday, 9/9. It cannot be the following weekend. We'll get back with you on this.

Not much else going on. I'm hoping to go into the office tomorrow. I'll be riding my bike to work tomorrow. That will be fun, good exercise, and best of all, much less frustrating in terms of traffic.

Tuesday, August 28, 2007

We Just Saved $50....

...and we didn't have to go with Geico either! ;)

The tube coming out of Andy's port tore. Long story short, it's a combination of mine and Joey's faults. I quickly clamped it so he didn't bleed all over the place, and called his home-health nurse. She said to take him to the Glennon ER. "Oh Great," I thought. "I get to spend a $50 co-pay and sit in an ER full of sick kids with my son who's on chemo for at least a couple of hours.

Julie got the bright idea to call the on-call oncologist. He arranged for us to skip the ER and go straight to the 4th floor and have the nurses put in a new needle.

That was it! Quick trip to Glennon, skipped the ER, we're good to go. ;)

Day 20

We're adjusting to the new routine. Andy's on his TPN from 7:00pm - 11:00am. So he's IV-free most of the day.

It is very difficult to telecommute. Not because of Andy. Because of Emma. She is.. well.. 2.

All in all, things were much easier today than they were when we were in the hospital.

We have an appointment tomorrow to see the oncologist, and at that time we'll setup an appointment for his chemo on Friday, which will be the last chemo of this cycle.

Monday, August 27, 2007

See? That wasn't so hard!

Thank you, kind lurkers, for posting! ;)

I'm going to keep with my tradition of not responding to posts directly, but to hint at them indirectly.

Ok, there were a few good things to come out of the 60s, and I'll give ya your muscle cars. Didn't the Zep get their start in the 60s? Hmm.. what else... Ok, some of the music wasn't bad. Oh yeah, and the first of Gen X were born in the late 60s, so the 60s weren't all that bad I guess.

But the 90s are still better. You old fuddy-duddys! Now let me borrow a $20 because I just had new subs put in the back of my Honda Civic. (ouch, that one almost hits close to home) :)

Glad to see you all still have a sense of humor along with me. And I'd like to thank Jay & friends for their prayers on Sunday. We're home Monday, so I think that may have done some good.

Glad to see the neighbors joining in the fun! ;) I was thinking about the block party, and unfortunately we won't be able to contribute much to the festivities. Depending on Andy's counts, I'm thinking that, at best, Julie and I will be able to come out alone, one at a time, for a short period of time while wearing a face mask (think SARS masks). Yeah, it sucks doesn't it.

I'm going to enjoy my home. See ya all, and keep the comments coming! I love hearing from you all.

Day 19 - Big News

Ok, time for a quick upswing on my emotional roller coaster. Andy hasn't had a fever in over 36 hours, so he's off antibiotics. They were going to monitor him for another 24 hours, but since his counts are still up (dropping but up) and since he looks so good now, they're sending him home!

For those of you who don't know, Andy has been on TPN through his port. That's how he's getting his nutrition and is now looking healty again without having eaten much of anything.

A few days ago, when we were originally supposed to go home, they arranged to have his TPN delivered to the home and have a home health nurse help us out. So starting tonight, he'll continue to get his TPN, even at home, through a much smaller (and quieter!) IV pump and with the assistance and training of a home health nurse. The best part is that my insurance is covering this 100%! My insurance, day to day, is very annoying, but when it comes to big event such as this, I thank God that we have my insurance!

He will continue to be on a laundry list of drugs. They're taking him off Tylenol with Codeine and giving him Oxycodone. Yeah, that's the stuff that the teenagers are on now. But he's been on it for pain here in the hospital and it's working great, and in this dosage we don't have to worry about addiction.

So that's it! Looks like Andy and I will be sleeping in our own beds tonight!

Ok, all you lurkers who read but never comment, speak your mind! Say hello! I know you're there! ;)

A Special 9th Birthday

The girl in the room next to us turned 9 today. To protect her privacy, I'm not going to throw out her name or room number, but I'm sure if you sent a card or a little something to the 4th floor nurses station and told them to give it to the birthday girl in the room next to Andrew Kelley, they'd be able to figure it out. :)

*Edit* I'm not sure why she's here but I don't think she's a cancer patient. So if you do send her something, don't mention any specific disease or problem.

I Need to be Angry

I'm very angry and need somewhere to focus that anger. There are a few things that should bother me a bit, but given my situation where emotions are amplified, they are really eating me up.

I've tried being angry at myself, but it only hurts my family.

I've tried being angry at God, but that will only make him pissed, and the last thing I need right now is a pissed off omniscient being.

I've tried being angry at the tumor, but that doesn't accomplish a thing. I almost feel as though the tumor is laughing at me for being angry at it.

I've tried being angry at my employer (all references as to where I work have been removed from this website, by the way) for having unfair EMTO policies, but that'll just get me in trouble at work, or worse.

I've tried being angry at my dad for not believing me when I tell him things regarding Andy's condition or saying I'm talking too "serious and business-like" but that will only make things worse in the end.

I've tried being angry at people in general for taking the whole "don't come around if you have any symptoms at all" with a grain of salt, but that will only make things worse, and I think everyone finally got the picture now.

I've tried being angry at the IV pumps for beeping and waking Andy up, but that only made me take it out on a nurse named Ann, to whom I owe an apology but haven't seen since.

I've tried being angry at the asshole Richmond Heights cop who drives car number 7213 for his predatory policing of Bellevue Ave., thus being a disgrace to the badge on his chest, but he'll get what he deserves at some point, I'm sure.

Speaking of this, I've tried being angry at Mayor Slay and everyone else responsible for the good-in-theory-but-unfair-in-practice redlight cameras in place in the City of St. Louis, but all that does is make me look like a fool. (c'mon STL, you're a classy city. Do it right or don't do it at all.)

I've tried being angry at those who are too lazy to hold down a job yet seem to live in luxury (how???) while I work my ass off and struggle to pay bills, but all that does is make me mad at Clinton for allowing welfare to get where it is today.

I've tried being angry at Clinton for allowing welfare to get where it is today, but all that does is make me laugh at him because he has a funny voice.

I've tried being angry at Andy for being such a light sleeper lately, but I just can't be mad at him.

I've tried being angry at everyone who picks the wrong time to call. In particular, about 3 minutes after he falls asleep. But they don't know that he just fell asleep.

I've tried being angry at my 4th grade teacher because she treated the boys in the class unfairly, but that has absolutely nothing to do with anything.

So, I'll do what anyone else my age would do in my situation. I'll be angry at the entire early baby boom generation, just because it's so easy to do, and you love to return the favor. So screw you, boomers! Go retire already! Woodstock sucked! the 60s sucked! The 90s were the best! Kurt Cobain was a God! (I can't believe I just said that. eww)

Ok, now I feel better. Thanks early boomers, you're always fun to be mad at. Now call me lazy and slothful and I'll call you family-hating workaholics. Now tell me MTV and Nintendo fried my brain as a child and I'll tell you LSD and/or "the bush" fried your brain as a young adult. Then I'll make you take me out to dinner at a nice restaurant so you can buy me some food because I don't have enough money right now since I'm saving up for a PS3 to plug into my 60" HDTV. (oops that one hit kinda close to home)

Sunday, August 26, 2007

Hospital Stay + Heat Wave = Weight Gain

Before this crap started happening, I was starting to get to a point to where I was taking better care of myself. Among other things, I had been walking a few miles. Not daily, but as often as possible. I also picked up a bicycle and was planning to start riding it the 4.2 miles to work, in no small part because of the 64/40 construction and the loss of my on-ramp and off-ramp, Bellevue.

Then this god-awful heatwave started. Next thing I know we're in the hospital. At least during the heat-wave I wasn't completely sedintary. But heat wave + hospital, and I'm sedintary. Add to this the fact that, for the most part, the hospital food is grilled or fried, and I've gained quite a few pounds. I can feel it and I can see it.

Now that the heatwave is gone, or going away, I can at least get out and walk a bit when someone is around to watch Andy. However, my calf muscles have begun to atrophy on me. I can walk a 15-minute mile, then my calf muscles start to really burn. And by "a" 15-minute mile, I mean one 15-minute mile. I don't even really get the cardio I want because of my calf muscles.

I figured it out that, from the elevator door, out the hospital door, it is almost exactly .5 miles down to Grand & Russell. So the last couple of days I've just walked there and back. I hope to be going to somewhere around Grand & Arsenal and back by the end of the week.

Hopefully I'll be at least burning off the fried calories I'm taking in... Or part of it. This is gonna take a while to work off, that's for sure.

Ok, dinner time. Off to get a burger & fries.

Day 18

Andy hasn't had a fever since midnight. This means that it is possible that we could be at home in 24 hours. While it's possible it's not probable. However, if his fever doesn't come back, I have a feeling we'll be home by this time Tuesday.

Just a reminder of what's to come. Andy gets his Vincristine again this Friday. The following Wednesday, that's a week from this Wednesday, he will be admitted to the hospital to begin the process of pumping him full of fluids. The following day, week from this Thursday, he will receive his Cisplatin and get bloodwork for his AFP counts. The next day, a week from this Friday, he will be coming home, chemo cycle #2 started. Soon after, we will have the results of the AFP counts which will give us an idea as to whether or not the tumor is responding to chemo.

Andy's buddy Adam started today against the Braves. Looks good so far. Top 8, 4-1 good guys right now.

Nothing new going on. Just a lazy Sunday on the 4th floor.

Andy won't take a nap, of course.

I've had better days, I've had worse.

Saturday, August 25, 2007

Parole Denied

Because of Andy's "tenchaper" (as Joey would say), we'll be here a bit longer. His fever broke a bit earlier this morning, but for the most part, he's had a fever since the small hours of the morning. Sometime between 1:00am and 3:00am, to be exact. At 1:00, he was fine, at 3:00, he was 103+.

Still not sure exactly what's causing the fever, all blood tests are coming back negative. Hard to say at this point.

It's looking like it will be Monday or Tuesday at the earliest before we leave the hospital. Let's say he wakes up tomorrow with no fever. Then the earliest would be 24 hours from tomorrow morning. However, they will want to make darn sure, so they will probably keep him another 24 hours. So realistically, I'd say we're probably looking at later in the week before he can go home.

Andy's counts are dropping now or will be dropping soon. What's this mean? It means we'd really rather not have visitors until his counts are up. Yeah, this includes grandparents. Yeah, this includes siblings even. There's no point in taking a chance. With his white blood cell counts so low.. well... it's just not worth it. So as much as Andy and I would love to have your company, hold off until further notice.

Day 17

Day 17 should be a long day. As you read in the *Important* post, Andy ran a fever last night of 103.6. I think he's still hot right now. This should mean that we won't be going home today and possibly not tomorrow.

So yeah, this scared the crap out of me. I keep hearing that infections can be fatal, and next thing I know he's running a > 103 fever. Normally with a child I don't worry about a > 103 fever unless we can't break it. 103 isn't nearly as bad for a kid as it is for you or me. It's about like you or me running 100 or 101.

On to top of the fever, Andy threw up this morning at 3:30. His belly his bothering him now, but he also just received his medicine.

Blood tests are in, hopefully soon we'll find out what's causing this fever. I"ll update when appropriate.

Be sure to read *IMPORTANT* for chemo rules of the game. I don't know how much clearer it can get than simply, "Don't come around if you're sick, think you may be sick, or have been around anyone who's sick." Also, remember I"m not singling anyone out, but there have just been too many rules being bent lately. No more.

* IMPORTANT * - Rules of Chemo

It's 4:30am. Andy's been up and down all night. I've been up with him for the last hour or so. He's running a fever of 103.6. He's throwing up. It's possible he's getting sick, or maybe his port site is infected. It's probably the latter.

This is a good time to go ahead and throw out a few reminders. I've been lax on this lately because people are starting to see me as being too strict about things in general with him. But he's my son, so it's time to be strict again, and if you don't like it.. tough!

Remember, an infection can potentially be fatal. Let me reiterate. An infection can end Andy's life. Yes. You heard me, an infection can kill him. In his weakened state, if he just gets a simple cold, it could give the antibiotic-resistant bugs in his system a chance to attack. What does this mean? It means stay away if you're sick, think you might be sick, have been around someone who is sick, etc.

Let me re-iterate. If any of the following apply to you, STAY AWAY:

  • Coughing
  • Sneezing
  • Runny nose / stuffy nose
  • Sore throat
  • Fever
  • Any other cold / flu symptom

If you have been around anyone with the above symptoms, STAY AWAY!

This means YOU!

You may be saying, "But I'm his (fill in your relationship to him)." I don't care. STAY AWAY!

You may be saying, "But it's just a little (fill in your symptom)." I don't care. STAY AWAY!

You may be saying, "But it's probably just allergies." I know mold is up right now, but until you have 100% proof that it's allergies, STAY AWAY!


All that aside, I don't want to accuse anyone because chances are very good that he has an infection somewhere in his body, it was not introduced to him by a visitor. He's shown no symptoms. All of his visitors who have been "bending" the rules lately (except one) have been sick with the same cold that Andy and I already had, which is part of why I've been allowing you to bend the rules.

I guess we're not coming home today.

Friday, August 24, 2007

I'm Very Surprised

Yeah. I'm shocked. If I woke up tomorrow with my face stapled to the carpet, I wouldn't be more surprised than I am right now. Unlike Clark, however, I'm surprised in a good way. Except for yesterday, which I'll try to make up over the weekend, I've actually been able to work this week. In fact, as of 2 minutes ago, I even managed to put in an extra hour today, helping to make up for my lack of work yesterday.

When this all started, I figured I'd try my hardest to put in as many hours as possible from the hospital. I didn't think it would be possible though. But ya know something... If I find the right projects to work on, it helps pass the time in the hospital.

This whole thing might work out afterall.

Day 16, Morning (Updated 10:50am)

* Update * - We'll be going home tomorrow, not today.

First of all, welcome to our newest group of readers. Apparently an e-mail went around to the 4th floor nurses with a link here. Everyone say hi to Andy's nurses!

So it's looking like Andy may be going home today. I told our nurse that if it is too late in the day, we'd rather go home in the morning. I learned last time around that, mainly because of the 3 kids (Andy included), it's actually easier to just stay another night than to go home in the evening. So we'll see.

By the way, he's getting his Vincristine today instead of tomorrow (that's the next part of chemo).

Andy continues to be fed through his port. His pain meds and nausea meds seem to be doing their job very well. And Giada is on the Today show right now. She'd be a lot more attractive if she wasn't so snobby. You can just tell she's a snobby bitch by looking at her.

Andy's getting pretty restless. I think he's ready to go home. He's still sleeping more than usual, but I'm starting to think it may be boredom. I'll update as necessary.

By the way, when you get a chance, check out the Cardinal Glennon Child Life Department Donation Wish List. Donate some stuff. Just make sure it's new stuff, not used.

And I still hate the beeping of an IV pump.

Martina McBride annoys me.

Thursday, August 23, 2007

omg i hate the word "blog"

always have. but I've always loved the concept of a blog. Let's call it what it is: a journal posted to a website. Maybe we can get blogspot to change their domain to heh

I'm gonna have to discontinue the use of the word blog. I just can't handle it anymore. I hate the word with a passion. I hate it.

Greg, I'm glad to see I finally got under your skin with my metaphor. I was going to kick it into overdrive starting tomorrow until you said something. And yes, Greg, I can tell your posts. They stand out like eurotrash soccer hooligans at an Amish mass.

Now, I pose a problem for you. You approach the event horizon of a black hole. From your own perspective, NOT the perspective of an observer, time becomes infinite. You have infinite mass. So basically, the event horizon of a black hole, as perceived from the event horizon not from an outside observer, exists at the end of time. Yet we can get there now. But it doesn't exist now from its own perspective, it exists at the end of time. But from our perspecive it exists now. So we can immediately go from now to the end of time if we can get to the event horizon in one piece. Of course tidal forces would rip us apart, but you get the drift. Or something like that. I'm sure I have it wrong, but you get the idea. Wrap your head around that one as you drift off to sleep.

(sorry, my night time reading was on Hawking Radiation for some strange reason)

Possible Parole

Our parole hearing is tomorrow. Hopefully we will be granted parole with house arrest. In other words, it looks like we'll be going home tomorrow (probably evening), and sent home with an IV pump and appropriate equipment to be able to continue to give him nutrients through his port, only from home instead of from the hospital.

Now, for some potentially good news. Let's say we should be cautiously optimistic about this. Over the last couple of days, I think I've noticed the size of his tumor decreasing a bit. Mommy seems to think it feels a bit better as well. Ya know how I keep telling you all not to diagnose Andy for me, right? Well, same thing, I'm not going to make diagnoses for the little guy. That's why I haven't posted anything until now.

One of the oncologists asked me what I thought this morning and I explained the above to him. He looked at it and felt around and generally agreed. He didn't say, flat out, that the tumor is going down, but he seems to think that it is possible that the chemo is beginning to work.

This is nothing to get worked up over. Don't get your hopes too far up, just look at this for what it is: another positive sign.

...and nobody's commented on any of my literary references yet. I figured I'd get something on the Ford comment, considering it was right after a comment about red light cameras. Think people!

It pays to be obvious, especially if you have a reputation for subtlety. (Ok class, this is a freebie. That's Isaac Asimov. However, you can draw your own conclusions as to any connections, if any.)

Port is Ready for Use

They inserted the port needle into Andy's port today. We're letting him sleep it off a bit, then he'll be able to be fed through his port. This also means no more finger sticks in the small hours of the morning, since blood can be drawn through his port. It also means he gets the IV out of his hand. This is a good thing.

And here we go. He's passed out and his IV pump is beeping. This is going to suck. Better post.

Day 15

We're still in the hospital. We slept until almost 10:00am today because we couldn't get to sleep last night until 2:00am. Stupid IV pumps.

IV pumps are still waking us up at night and keeping us up for an hour or so.

I'm still stressed about not being able to use EMTO.

Andy's still eating little to nothing.

The wealthy are still living it up by screwing with the middle class.

The liches of society are still sponging off the middle class.

Red light cameras are still screwing with the public.

Ford's in his Flivver and all is well with the world.

Andy's being given nutrients through his IV. A surgeon came in today to look at his port and said it's not infected, so once the irritation goes down a bit, we should be able to start using his port instead of an IV. That will be nice.

Wednesday, August 22, 2007

My little man

so you have not heard much from me on this blog. i really do not know what to say when i am typing but here i go. my son is the best nad toughest kid that i know. he is amazing he is up in the hospital room and getting stuck and poked on everytime he turns around and yet when i walk through the door he is all smiles and even laughing. daddy is happy to see me and so is andy. it is hard every night leaving andy and daddy there to come home. i hate it. i understand why i have to do it but that does not mean that i have to like it. joey and emma are reall troopers through all of this, they act out here and there but most of the time they are very happy and playing and havng fun and they love it when i say that we can go to the hospital and visit. so when i left tonight mimaw and papa where there and they were a good distraction for me to slip out the door. i came home and emma and joey are in bed. the house is quite and it gives me time to think about everything. i realize how strong my son is, how amazing my husband is, and how strong joey and emma are, and even how strong i am. i know tht andy will make it through this because of the strength of our family and our support team. i could not image going through this without the family and friends that we have. you are all amzing too.

when i left tonight they had started andy on his nutrition through his iv. i wil let daddy explain all that.
someone had asked about my feeling about andy's illness. here you go...
of course i wish that it was me and not my child
of course i ask every day why andy
of course i ask when is this going to be over
of course i ask why at all

then i think about and realize that i can ask all the questions i want to and that is not going to make it go away.
i pray that andy will be better and i am there for him and my husband and my other kids with all my heart and mind and soul and i know that we will all mmake it through this

Andy's Special Guest Visitors

Andy just got a visit from Cardinals pitchers Adam Wainright and Mike Maroth! They were both a bit nervous, I think, not knowing exactly what to say, but it was cool that they came by.

Tuesday, August 21, 2007

A Night (and day) in the Life

(begin stress venting session)

If you've ever been in the hospital, you will chuckle to yourself as you read this. Hospital life at its finest. And the poor souls to whom I refer only have the best of intentions at heart. But still.. gotta love hospital life. Julie's hospital visit was very similar. Almost humorous, it is. But it's all for the benefit of Andy. All to make Andy better......

and of course, I'm only discussing the negatives here since it's a stress venting session. there's a lotta positives i'm not even gonna talk about because i'm in the mood to complain, and dammit i deserve it. so does andy, but he can't complain, so i'm taking care of both of us.

So without further adieu, here's why Andy and I are so tired every time you call.

It's 9:00pm. Andy's screaming because he's overly-tired. He hasn't slept in 13 hours. Yep. 13 hours.

He finally fell asleep just in time for the nurse to take his vitals. Like 7 minutes before. No, I'm not exaggerating. I could have asked her to take his vitals earlier, but when he will finally fall asleep is a craps shoot, so no point in making her go out of her way. I can't asker her to hold off, better to rouse him now than let him fall in a deep sleep. So now he's screaming. I can't do anything, and he's slapping bottles away from me when I try to give one to him.

He and I will eventually fall asleep sometime within the next 20 minutes to 2 hours. Again, I'm not exaggerating.

We will both be woken up by the beeping of an IV pump or his alarms (respiration rate, heart rate, etc.) a minimum of 7 times between midnight and 6:00am. No, again, not exaggerating. 7 times at least. I've counted. It will take him just minutes to fall back asleep, about 30 minutes for me. Maybe tonight since we're both exhausted we won't wake up from the beeps. Who am I kidding, we'll wake up.

At 1:00am, he will wake up again when the nurse gets vitals. It will take 30 minutes to an hour to fall asleep again... for him. Even longer for me. Then again, this could be exaggerated, as time stretches and contracts in situations such as this.

At 5:00am, he will wake up again, this time to a lab tech getting blood from a finger prick since his port is irritated. This time he won't go back to sleep until 6:30. 7:00 for me. I asked the nurse to push this off as late in the morning as possible, but got the impression that it will still be early, although maybe not as early as usual.

At this point, the parade begins. Every time one person leaves, another comes in and asks the same questions, only for a different purpose and from different angles. And again, the people asking the questions only have the best intentions at heart, so in no way am I upset with any doctors, nurses, or anyone else who needs to come into the room. I smile, answer their questions, and try to avoid small talk so that Andy and I can squeeze in a power nap before the next line of questioning begins.

At some point the phone, cell phone, and/or pager will start going nuts.

Finally at around 8:00, he and I will both decide it's pointless to try to get anymore sleep, and we're up for the day.

He will once again be unable to take a nap between interruptions and just plain anxiety. And once again he will be awake for 13 hours, and we'll have to repeat it all over again.

Because I am back to work, I will be unable to nap throughout the day because I have a job to do. If I don't do my job, I don't get the insurance to cover this, and we lose the house, vehicles, everything. So I do what I gotta do. Worse yet, I need to be able to maintain the same level of service I provided before this all happened, which puts additional pressure on me and causes even more anxiety, making me even more exhausted and in need of a nap. Not gonna happen, Billy Bob. I still have a job to do, and I take a lot of pride (too much pride sometimes) in my job, so I must maintain my same level of service as always.

This is what it's like to be in the hospital. There's nothing we can really do about it, because it is all for a purpose, but... Yeah, that's life.

I can't wait until our next parole hearing.

Screw parole, I can't wait for our sentence to be over and life to return to normal, tumor-free. I want my life back. So does Andy. Oh my God, so does Andy. Poor little guy. He doesn't deserve to have to go through this. But at least he won't remember it when he's older.

So does Mommy for that matter. She's been wonderful through this. *claps for Mommy*

Now if you'll excuse me, I'm going to get back to watching The Number 23 now that Andy's asleep. This will be a weird movie to fall asleep to. ;)

nite all.

(end stress venting session)

Sorry I broke comments!

I was wondering why nobody posted lately. Ya coulda told me comments were broken. Anyway, all fixed now.

So long and thanks for all the fish.

Hospital Stay & Eating Updates

Andy's not eating, nor is he drinking bottles. They're talking about possibly feeding him either through his IV, his port (once the blister heals), or through a tube. The tube is doubtful given he's a chemo patient with nausea.

They're also talking about possibly sending him home tomorrow, if he looks okay, and sending him home with IV fluids and IV nutrition, meaning we'd have to take care of his IV at home. I'm okay with this, except for the fact that when he goes through tough times, including his non-eating spells, I'm comfortable at the hospital knowing he's in good hands, but I'm a bit nervous when we're at home.

I dunno, we'll see tomorrow. It's easier to work from home than it is from the hospital, but ya know, I have a few more hours of PTO left to burn if necessary, and work is the only reason why I'm not just telling them to keep him in the hospital indefinitely until he starts eating again.

More later.

(Oh, by the way, Chef Tim Lanigan at Glennon has some kickass BBQ.)

Day 13, Morning

Here we are, back in the hospital. Another morning. It was a very long night. When Andy was on morphine, the sleep interruptions during the night and early morning were minor annoyances. Now that he's off the good stuff, they are major problems. When he wakes up for one of these reasons, it takes a long time for him to get back to sleep. And for Daddy to get back to sleep for that matter.

Add to that his occasionally waking up scared out of his mind because he doesn't know where he is.

It's been a long night. It will be a long day. I'm telecommuting from the hospital today, although I'm taking a break to post this. It's pretty easy, physically, since Andy is spending the majority of his time sleeping. It's very trying emotionally, though, forcing myself to keep at it even though I'm here at the hospital. I have a feeling I'll be using PTO for a good portion of the day, however. I'll probably do that until my PTO is burned up, which shouldn't take too long at this point.

Andy was more like himself last night once he got some fluids in him. Lauging, smiling, playing, fighting sleep. He was acting like a 1-year-old baby. He still looks a little rough, but he's still not fully hydrated. It will take some time, I'm sure.

I think we're going to be in the hospital for a while. If we go home, he will become dehydrated again. It's hard for him to eat or drink anything with that huge liver pushing on his belly.

Everyone say a prayer or two for the children on the 4th floor at Glennon.

Monday, August 20, 2007

We Violated Parole

Well, we violated parole, so we're back in our cell. In other words, it's what I thought. The doctor didn't like the way Andy looked and put him back in the hospital for fluids and nutrition. Hopefully we'll be back out again tomorrow.

He is returning to normal though. His personality is really coming back. He just doesn't want to eat or drink much of anything. But he's been like this for a while, so nothing really new there.

That's all for now, more later if necessary and/or appropriate.

We're in 4208 if anyone needs us.

Oh by the way. We get Chif Tim's BBQ tonight! Somehow he caught wind that we love BBQ and offered to hook us up tonight. Yay! ;)

What I Expect Today

Andy's appointment with his oncologist is today. I expect to be re-admitted to the hospital. He's looking pretty malnourished and won't eat very much. His liver is huge and is pressing on his belly, making it painful for him to eat. And because he's on Tylenol with Codeine, his belly gets upset if he takes it on an empty stomach. Chicken and Egg.

And yes, I read the post about a friend with too much chemo getting throat infections, etc. Paranoia.

And yes, I hear what people are saying about chemo, cancer, etc. because they read it on the Internet or heard it from a friend. Paranoia.

Unless you were told something by a Cardinal Glennon nurse or doctor, I don't want to hear it, so keep it away from me. And if you were told something by a Glennon nurse or doctor, then I've already heard it.

Long story short... You're not Andy's doctor, so don't give me diagnoses please.

While I believe in free speech, now is not the time for paranoia, so I do exercise my right to delete posts at will. Paranoia posts will be deleted. Sorry. My website, my rules.

Sunday, August 19, 2007

Adjusting to our New Life (Day 11)

The adjustment is more difficult than I anticipated. Our first full day home has been a bit challenging emotionally. Being a bit burned out, I spent most of my day on the couch. Joey & Emma have generally been well-behaved, and Andy's been in bed most of the day. There are certain realities that had to set in, and are still setting in. It's just a tough adjustment.

The worst part is seeing Andy right now. He's very skinny, very frail-looking, and it's hard to get him to eat. I considered posting a picture, but thought better of it. It's just better if you don't see him for a week or two. (Yeah, I'll make sure I post bald pics after he loses his hair :) )

Not much else on which to report. Day 11 has been a pretty slow day. Andy's godfather stopped by today, which was a nice break in the monotony of things. Back to work tomorrow.

Life goes on. More later, as the situation mandates.... or as my feelings mandate.

Saturday, August 18, 2007

We are home!!!!

Well Andy and Daddy are home!! It was a long evening checking out of the hospital but everything went well and Andy is sleeping comforatably in his playpen. Daddy came home and then went back out to fill some of Andy's prescriptions that we will need overnight. Poor Daddy did not get home until after 10pm.
Anyway everyone is home and happy.

Andy has an appointment Monday and then back in once a week for more chemo and then back to the hospital in 3 weeks.

We will keep you up to date.

We're Going Home! (we think)

I think we're heading home in a half hour or so. His potassium came back a bit high on the last blood test but they think it was a false positive, so they just took more blood. Pending that, we're outta here in the next 30 minutes or so.

Over the next few days expect the frequency of updates to slow down as there won't be many updates. We'll probably get to the point to where there's 1 or 2 updates a week. This is a good thing.

More later.

Welcome Back, Google!

Dice-Man, my vengeance has been heard loud and clear. ;) (if you don't get the joke read the comment on my last post)

I submitted the page for re-addition, it now comes up as hit 1 on appropriate searches. I'm guessing someone will have it removed again, and I'll just keep re-adding it.

So long and thanks for all the fish.

Bye-Bye Google?

I've been telling people that if they can't remember the URL, they can Google andrew kelley cardinal glennon and get here. Now all of a sudden, Google dropped us. Even searching andrew 4 life which used to work, no longer works.

Someone specifically requested that Google remove us from their search engine. If I find out who did it, I will rip your teeth out one at a time, grind them up, and put them in your meals that you now have to drink though a straw. You heartless jerk. May you rot in hell with the low-life who rear-ended my wife's van and ran off.

Yeah, I'm being a little tongue-in-cheek here, but I'm still pissed that someone would request that Google remove us from their search results. Who would do such a thing?

*suspects it is the Myspace user Andrew4Life*

Day 10, Morning

Andy had his chemo today. 5-FU and Vincristine. He's had some nausea medicine and a bit of morphine. He's in a pretty snotty mood today, but that's fine, we love him anyway. :)

I asked the doctor if it's safe for him to go home considering his labored breathing, and the doctor said he's fine. His lungs are in good shape, he just has to work to breathe a bit, so he can go home tonight, if they still feel it is appropriate when that time comes.

Cross your fingers, hope we get to go home tonight!

Friday, August 17, 2007

Closing Thoughts on Day 9

Tomorrow (Saturday, aka Day 10) is a big day. More chemo (5-FU and Vincristine), then hopefully a trip home tomorrow evening! Keep your fingers crossed and hope we go home. I'm starting to miss my bed, and I'm sure Andy will be happy to be back in his own bed with his big brother in the room with him instead of boring ol' Dad who doesn't stay up late talking to him. :)

I gotta say, I'll miss this place. I'm getting used to the routine, the people, the food, the smells... I'm not totally dependant on this place, but I've grown very used to it and very comfortable with it. I honestly think it will take a day or maybe two to get used to being back home. I guess I'm getting institutionalized. hehe. that's what I get for watching Shawshank a couple weeks ago. ;) I can't believe I'm actually a bit sad about the thought of leaving the hospital. But I'm more excited than sad, so that's good. :)

The last couple of nights, by the way, Andy has had cancer even in my dreams. Well, night before last something was wrong but no specifics. Last night he actually had cancer in my dreams. This is good. When I wake up in the morning, I don't have to learn of his cancer again, which makes it a bit easier to handle in the morning.


Joey & Emma

Someone posted asking how Joey & Emma are doing. They're okay. Emma is a 2-year-old girl, so she's pretty difficult. Joey's okay and is looking forward to having Daddy & Andy back home. Really, they're doing okay and will be doing even better once Andy and Daddy are home.

Joey & Emma will no longer be able to go to the babysitter, so things will change a bit for them. They will miss the babysitter and their friends over there, but we can't risk them getting sick and bringing something home to Andy.

We are looking at a period of adjustment for everyone, but I think we'll all make it through.

Day 9, Noon Update

Nothing new to report on, really. Andy had his first dose of chemo last night. No nausea, no vomiting. He's taking bottles again, and we'll try to actually eat at lunch or maybe dinner.

Next chemo dose is tomorrow. That will be the 5-FU and Vincristine. Hopefully we'll be going home tomorrow (Saturday) night. If not, we're looking at probably Sunday.

Thursday, August 16, 2007

Chemo Started

Mood: Tired

He received his first dose of Ciscplatin, starting at about 10:30. It will drip into him over the next 4 hours.

The tumor is on its way to getting its butt kicked.

I'm off to watch HG2G (nerds know what I'm talking about, the rest of you will have to Google it). Then I'm going to sleep. See ya tomorrow.

Of all things....

Mood: Royally pissed

Of all things to happen, and of all times for it to happen. Someone hit the rear bumper of the minivan today, apparently trying to pull into the parking spot next to us. It's not bad, but just the idea of it. Security was notified, and I told them that if they happen to see a vehicle with a matching dent, I'll pay $100 for the license plate number.

It's not real bad, and it's not as bad as I initially thought from talking to Julie, I guess I just misunderstood her.

Police report on file, report on file with security at the hospital, I guess we're done. All in all, no biggie, and a minor setback. Could have happened to anyone, anywhere, at any time. Not the fault of the hospital at all, only the fault of the lowlife scumbag who did this and ran off.

Cardinal Glennon and a Quick Word

Cardinal Glennon Children's Medical Center kicks ass. That's about the best way I can think of to describe this place. Unique. That's another word. From the moment we arrived, until now as our stay here is winding down to the last day or three, the people here have been exceptional. All I can think of is that they are very strict in who they hire.

Since I've worked in healthcare, I've never really been a huge fan of coming to pediatric hospitals, simply because occasionally my tunnel vision can break and I will occasionally accidentally look around me and see a kid... well.... in Andy's shape. It has always scared me, hoping to God that it wasn't my kid.

But this perspective has changed. I've always known that these kids were being helped, but I don't know, it's just different now. I can't say I'm glad that it's my baby there in the bed hooked up to tubes and wires, but I'm certainly glad that he's here of all places. Now that I see it from a different perspective, I see all of the good that's happening around here.

Everyone from RNs to lab techs to cleaning staff to oncologists and even surgeons have been great. If you've ever been hospitalized you know that you are treated with compassion, but in the end your are just a patient. Especially to the surgeons of all people. This is far from the case here at Glennon. He is treated by everyone as if he is their own child. Everyone is like this, including the staff at the Bob Costas Center, the MRI techs, nurses, and doctors, the 4th floor nurses and staff, the surgery team, and the PICU nurses. Yeah, everyone.

No offense to any surgeons who may be reading this, but surgeons are generally fairly cold people. Sure they're compassionate to a degree, but I think they tend to see us as a collection of working parts that constitutes a whole patient, rather than a living, breathing human. At least this has been my experience. Not so here at Glennon. His surgeon, along with all of the surgery team who has seen him from time to time, have been excellent. His surgeon even led a prayer with us before surgery. Needless to say, Julie and I were stunned.

I'm not really sure what else to say about this place. You'd have to be a patient or a parent here to really understand just how unique and special this place is. Like I've said in the past, I now know that he is in the best possible place he can be. And I also keep saying that this entire experience has completely changed the way I look at my job, seeing as how I work in the healthcare sector. For the better of course.

Now a quick word about something completely unrelated. I'm getting e-mails saying "Hey, you need to copy-edit your posts!" Nah. That takes away the spirit of what I'm doing. I'm posting what pops into my head, and it's therapeutic for me. I don't care if it's misspelled or whatever else, I'm posting it. Remember, keeping you all informed is the secondary purpose of this blog, the primary purpose is for me to put down my thoughts, hence the stream-of-consciousness writing style.

Audiologists are here to give him a hearing test prior to chemo. Once this is finished, chemo will begin. Gotta go. I hope this post meant something to you and you remember it if you ever need to take your child or grandchild to a pediatric hospital in the St. Louis area.

Social & Work Side Effects

If you're looking for an Andy update, look at the next post. Update was provided minutes before this post.

First, work. Julie works for the Humaine Society of Missouri. I work for a healthcare organization. She works with animals all the time, every day, and I spend a good amount of time at our hospitals around sick people. Long story short: she needs to wash her hands after working with an animal, and I need to Purell as I leave a patient care area. That's about it. No side effects there!

Socially, it's a different story. If you come over to the house and even think you might be catching a bug, don't come over! Joey & Emma cannot go to the babysitter. Andy shouldn't go anywhere with us, not even to the store. Some days his counts will be higher than others, and on these days, we can take a bit more risk, meaning Joey & Emma can go to Target if necessary, or these would be the days that we may take Joey & Emma to the zoo or some other fun thing.

I'm beginning to think we won't have a big birthday party for Emma (she turns 2 September 7). It's just sounding like a bad idea.

I still plan on going to Tucson for a 3- or 4-day weekend in November if at all possible, but no kids will be coming with me, neither will Julie.

Hopefully, we should be back in full force just in time for Christmas, though! So at least there's something to look forward to there.

Wash your hands, wash your hands, wash your hands. That's the key to Andy's making it through this as problem-free as possible.

Big News, Day 8 Morning

Mood: Happy

Andy is essentially off the morphine now. He was awake most of yesterday and is awake today. His puffiness is going away and he's starting to look like Andy again. He's a little pissy, and who wouldn't be, but my baby is back. The last hurtle: a smile. I want to see that smile again.

Andy has finally pooped (4 times in 24 hours, actually!) and has finally had a bottle. Things are definitely getting better for the little guy.

Unless something happens to change things, Andy should begin chemo today, which means he should hopefully be home by Saturday. It is sounding like they will do anything and everything to keep him from being nauseated and vomiting, up to and including Marinol if necessary. Yeah, that's prescription pot. :)

So that's all of our news. For those of you who want details on chemo, read on.

Andy will undergo 4 chemo cycles, surgery to remove the tumor, then 2 more chemo cycles.

Each chemo cycle begins with a 3-day inpatient session to issue the Cisplatin. This is the drug that causes nausea, vomiting, and hair loss. What it does is kill any rapidly-dividing cells, hence the hair loss. This is also the drug that severely weakens his immune system. At this time, they will also begin his anti-nausea medications.

On day 3 of each cycle, he will receive his only dose of Fluorouracil (5-FU). This essentially has the same side effects as the Ciscplatin.

Also on day 3 of each cycle, he will receive his first dose of Vincristine. This causes hair loss, among other side effects. Like the other drugs, I'll let you follow the links and see for yourself.

On day 10 and day 17, he will receive more Vincristine.

The cycle lasts a total of 3 weeks, then we go back to day 1 with 3 days of inpatient service, pumping him full of fluids for the Cisplatin.

After the end of the first cycle, some blood tests should show that it is starting to take effect. In addition, we should see the tumor going down (yeah, you can see it just by looking at him).

After the end of the second cycle, they will do another CT scan to make sure the tumor is going down. If it is, they will continue as planned (see above). If not, we will start over again with a differnt type of chemo using Cisplatin and Doxorubicin. If we lived in Europe, this would be the method of chemo which would be used. It is not used in the US because of a marginal risk of some long-term side effects.

If this doesn't respond, then we're looking at liver transplant. We'll talk more about that if it comes to that, but that's plan C and we shouldn't get there.

So that's everything. Thank you all for your continued support.

Wednesday, August 15, 2007

Day 7

Andy is doing better and better. They are taking him off of the morphine totally. Hopefully he will respond well and then he will be transfered from surgery care to hematology care. Then we will start talking about when we are going to start chemo.

The chemo will be 4 cycles all being 3 weeks apart. He will be admitted into the hospital at the beginning of each cycle. He will probably have to stay for at least a day or three. With the first drug that he receives he will have to receive intravenous fluids for about 4 hours each time.
He will have chemo for about 3 or 4 months then surgery and then 2 more cycles of chemo after surgery.

He is doing very well.

Tuesday, August 14, 2007

Out of PICU

Andy is out of the PICU!!! He is back on the 4th floor. He is doing better, he is still on the pain medication and he is still a little agitated. Now we are waiting for the surgeon to release Andy so that they can start the chemo, which still might be a couple of days still. They want to make sure that he is not in pain before they start the treatment.

Monday, August 13, 2007

Thank you

Well, I am at home again this evening with Joey and Emma, who are being excellent troopers through all of this. Joey is being such a great big bother and Emma I think is just a little to young to understand everything that is going on. I have the best husband in the world but most of all he is the BEST Father. He has not left the hospital to come home since Andy has been there. He is glued to Andy's side. He is the most amazing Daddy. He even gave blood today and was only stuck twice. (that is really good for him)

I want to thank everyone that has helped us. Everything that has been done has been amazing and greatly appreciated. Thank you everyone for all the food. It will not go to waste.

A Very Long Day 5 Update

Mood: Caffeine-Fueled Optimism

Day 5 of the nightmare was a long day. After talking to a few people, I've learned that people would generally prefer a few posts a day with updates throughout the day than one long update at the end of the day. So starting tomorrow, I'll post updates as I know them.

Pain Update
Andy had a rough night last night. He woke up a few times, made a whine, then went back to sleep. At about 2:30 or so he woke up screaming in pain, inconsolable, despite his 0.7cc morphine every 2 hours. His nurse, who was just awesome by the way, and I did everything we could to settle him down. Eventually he settled down and went back to sleep.

This happened a few times throughout the day. There seems to be an ongoing struggle between the Oncologists, who want to be more liberal with pain meds, and the Surgeons, who want to be more conservative with the pain meds. He is now receiving 0.3cc per hour continuously, on top of the 0.7cc every two hours. As of now, they're thinking this is helping the pain, but is making him more agitated. Sometime soon a doctor will be up to make a decision as to how to proceed. Either his pain meds will change or he will receive additional meds for agitation. If you've ever been around someone on morphine, you know they can become quite agitated.

Tumor Update
It is not 100% official yet, but it now seems as though his tumor is definitely a hepatoblastoma, embryonal + fetal. What this means is that the tumor started out as a liver cell that went "oops!" and didn't die. All cells are programmed to terminate at a certain point, but this one wasn't. So it created more cells like it. Repeat process until he has a huge tumor. Considering the negative aspects of it, this is actually good news. It means it's the most likely type of tumor to respond to chemo, and that once it's gone it won't come back. We'll be 100% certain tomorrow.

Work-Life / Financial Update
I picked up my FMLA paperwork from the office today. It was a good excuse to get out of the hospital for a while, although I really didn't want to leave. I was greeted with some unpleasant news. But I should give a small paragraph of background first.

In healthcare, we have two types of time off: PTO and EMTO. Being a non-managerial employee with 5 years of service, I accrue Paid Time Off (PTO) at a rate of just over 4 hours per 40-hour week worked (even though I'm salaried). PTO is used as personal time off, vacation time, sick time, and holidays all rolled into one. So if I get sick or my kids get sick and I need a day off, that's 8 hours of PTO. When Christmas comes around and I want off Christmas Eve and Christmas Day, that's 16 hours of PTO. Get it? There's also Emergency Medical Time Off. Not sure how much this accrues per pay period, but I have 60 hours of PTO and I think 160 hours of EMTO.

I learned today that since the medical condition is not mine, I cannot use EMTO. I can only use PTO, or take time off unpaid. OUCHY! On top of this, Julie is out of sick time which means all these days off that she's taking are unpaid. (before you panic, please keep reading)

We were given a very generous monetary gift. I cannot say from whence it came, but it should be enough to cover Julie's unpaid time off right now. (You know who you are, and I'm getting ready to call you after this post.)

In addition to this, I've put a few things in motion to hopefully counter-balance things a bit. Some of you know some of the things I've put into motion and they sound drastic, but I'm trying to cover every angle, even worst-case scenario. Don't forget that I am well versed in the field of finance, including personal financial management. I'm just covering my bases and not making any drastic moves.

It looks like Julie will have a telecommuting option, and I have volunteered my time to the Humaine Society of Missouri to help get this setup, since... well... it's my job to know this kind of stuff. I'm yet to get a call from HSMO's IT guy, which means he knows how to get it up and running???

In addition, one of the things I set in motion was for my manager and his manager to try to think creative and come back with a few options. Yeah, I'm asking a lot, but that's what I need to do in this situation. I've talked to them and it sounds like we have a lot of options in front of us. I will return to work next Monday and told them we'd sit down and figure things out then.

So, putting it all together, I think between everyone's offers of helping with the kids, Julie's telecommuting, a few options I have in front of me, and a heaping helping of generosity from a few angels in human form, we'll get through this.

Social Update
Thank you, thank you, thank you, thank you, thank you! I don't know what else to say. We've had friends and family in and out all day. A few of my coworkers were here today, and one of these gentlemen led a heart-felt tearful prayer. If any of these gentlemen are reading now, thank you so much for coming. It meant so much to me.

I've been receiving wonderful comments from my online gaming friends. For those of you who don't know what Ultima Online is, it's an MMORPG (clicky for more info). It's a way I relieve some stress a few times a week, and it has a close-knit community. To my UO friends, thank you for all of your support, and when this is all over and Andy's cancer-free, we're gonna have one helluva virtual kegger, courtesy of WBV and friends! ;)

My aunt has been spending considerable amounts of time with us lately. She's almost become my hospital buddy. :) Becky, I know it takes a lot out of you, and we really appreciate your company.

Life Adjustment Update
People keep asking how I'm doing, how Julie is doing, and how the siblings are doing. Let's face the facts, our life has changed now. But I think we're adjusting well. Julie is getting better, I think she was taking it pretty rough at first. I'll let her post on her own feelings if she so desires.

Joey (the four-year-old) is doing well. Yesterday he came up to the hospital, but since Andy's in the PICU we didn't want him to see his brother. I kept trying to sneak off to come up and check on Andy, but Joey knew exactly was going on. Finally I decided to let him come up. Joey came into the room, told Andy he loves him, and rubbed Andy's head. That's how Joey shows affection to his brother, he rubs his head. It's cute as hell. :)

As we were walking away, I asked Joey if he was scared seeing Andy like that and he said, "No Daddy, I love Andy!" I asked him if he was scared about all the tubes and wires going into Andy, and he probably recalled seeing Mommy like that a few months ago when she was in the hospital, so he replied, "No Daddy, those wires are helping Andy!" Yeah, Joey's just fine.

Emma. At some point, between the age of 2 and 2.5, kids become more cognizent of the world around them. They start to see how things work. Emma will cross this threshold with this whole thing going on. To her, it will simply be how life is. I think she will be just fine.

For those of you who don't want to read my inner thoughts, continue to the next section.

Ok, so how am I doing? I seem okay on the outside, am I okay on the inside? Short answer: it's up and down, but generally yes. Long answer: The hardest part is waking up in the morning. Every day I have to wake up and realize all over again that my baby has cancer. It is absolutely agonizing. Unless you've been through it, you cannot possibly understand. So I wake up at about 6:00am, maybe 6:30am, look at Andy, then go back to sleep. When I'm asleep, I don't have a baby with cancer.

Somewhere between 7:30 and 9:00 (yeah, 9:00!!!), a doctor comes in and starts examining him. This is what makes me get out of bed. But guess what? That doctor gives me good news every day! It may not be earth-shattering, but it's generally good. Today that news was that he is progressing well and may be out of the PICU by tomorrow. As the day progresses, I am greeted with more and more good news. For example, the fact that it looks like a hepatoblastoma. This is good news!

Throughout my day, I am greeted with more good news than bad news. At some point, around 5:00pm or so, I am actually happy and in a great mood.

The calls, visits, e-mails, blog posts, and general support from everyone also contributes to this. I can say that Julie and I could not do this without your support, even if it's just a quick one-line e-mail that reads, "I'm thinking about you, Andy, and your family."

As the evening winds down and it's just Andy and myself in the room, I find myself thanking God for all of the good news of the day, for our family and friends, and for everything we have been given. As you may or may not know, I am not a very religious person, so this speaks volumes.

So how am I doing? I'm cautiously optimistic.

What's Next?
For the blog, what's next is shorter posts, posted throughout the day. For Andy, it's looking like he will probably return to 4 North tomorrow. I would assume this means chemo the following day, and he may be released by Friday. I don't know this for a fact, but this is taking multiple sources of information and putting everything together.

Andy will probably undergo 4 cycles of chemo which will last a total of about 3 months, then will go into surgery to have the tumor removed. This will probably be followed up with more chemo. If you're wondering when he will lose all of that beautiful hair of his, it will probably take 2 - 3 weeks.

Pictures! I know you're dying to see pictures! Many of you don't even know what he looks like. Like I said, I haven't been home so I haven't had a chance to find some good pics of him. But don't fret, they will be posted soon.

Again, thank you all for your support, and I apologize for the long post. And keeping with my tradition on this blog, I'm not going back to copy-edit. Any typos will remain typos. Sorry if this bothers you. :)

Sunday, August 12, 2007

Day 4, cont'd

It's 7:00pm. Mommy went home with Joey & Emma. Andy's still in a bit of pain, which is what's making his heart rate so high. He probably won't be going back to the 4th floor tomorrow. I get the impression he could be in the PICU for a few days.

Thank you all for your continued support. It's great seeing you all. And if you're wondering whether or not you should come up, it breaks the monotony, so yeah, come on up.

Andy can have 2 visitors at a time while in the PICU.

Day 4

We're still in the PICU. Andy's doing exceptional. He's still on a morphine / Tylenol combo for pain, but he's doing well. He's been awake a little more today than yesterday, but not too much. And that's good.

He had to get some blood. It turns out he's O-. It's really cool that he's Type O Negative (yeah, like the band). :)

It's possible he may be back to the 4th floor tomorrow.

Mommy will be going home tonight to spend the night at our house with Joey and Emma. I just can't bring myself to leave, so I'm not leaving.

It's looking like Joey probably won't be going to preschool. We don't want him bringing any bugs home for Andy. But that's not a big deal, he'll start kindergarten on time.

All in all, we're still positive. Tomorrow (Monday) is a big day, so we'll probably have a significant update later tomorrow.

Saturday, August 11, 2007

Post-Op Update, Day 3 (and an idea)

Andy came out of surgery at around 10:30 or so, and went to the PICU (Pediatric Intensive Care Unit). This is no surprise, we were expecting him to go to the PICU for a variety of reasons.

So what was going on? He had his biopsy today and had his port installed. So far so good. He's really being a trooper. He's hopped up on morphine right now, so basically if he wakes up it means he's in pain. At SSM, we don't like pain. Not at all. The second he shows signs of pain, he gets a bit more morphine.

We expect the results of the biopsy Monday afternoon, but we're pretty sure it will be hepatoblastoma. This would be good. Since this particular type of tumor is actually liver cells that went awry, it responds better to chemo.

More to follow on this subject.

Thank you all for your support. Please distribue the URL to this page around.

Day 2

Andy is still his usually happy self. He's a bit stressed because he can't get down on the floor and play, plus he wants to be home with his brother and sister. They weren't able to get him into surgery today, but he is now schedule for 8:00am tomorrow. A couple days in the ICU, then we'll be able to get the chemo started.

Big brother and sister came to see Andy today. They were both very happy to see him and he was happy to see them. We had a good time. They just got a bunch of brand new toys in the play room here in 4 north, so we were volunteered to help get them unpacked, put together, and marked "4 North". Joey helped a lot. Joey and Emma had a good time playing with the toys up here, they got to the point to where they were starting to feel comfortable here in the hospital environment, which is a step in the right direction.

Andy has been taking regular walks with us. At Glennon a walk means he hops in a wagon while mommy pulls the wagon and daddy wheels around his IV pump. But he really enjoys his "walks" around the campus, and everyone loves seeing his bright blue eyes. Unfortunately we won't be able to go for any more walks once he's in ICU, but we'll find other things to keep him happy.
All in all, the general feeling was positive today, even from his surgeon and his Oncologist. Everyone just has a good feeling about his case.

We are very happy with everything to do with Glennon. His Oncologist is new, but we were told, in these exact words, "She's a world-renown Oncologist." His surgery was to be performed by the chief of surgery, except that now that it's on Saturday, it will probably be performed by his partner, which we're told is just as good. Andy is being treated like royalty here, as are the rest of us. I think the fact that he's a cancer patient has quite a bit to do with it... that and those big blue eyes of his. Despite all the long waits we've had in the ER here in the past, I can honestly say this is the best hospital experience we've had... so far anyway.... oh yeah, and their new PACS system helps there too. Everyone I talk to from techs to nurses to doctors to my own family is really happy with the system, and the images they were able to show us were just fantastic. They were very sad, too, considering the images show 80% tumor and about 20% liver. It's huge.

So all in all, things are going as well as possible given the cirumstances. All the bases seem to be covered, he seems to be in the best possible hands. The only thing left to really worry about is whether or not he will take to the chemo. But everyone seems optimistic about it.

So that's the Day 2 update. Don't worry, there won't be an update every day, but I wanted to make sure I was able to get out a somewhat positive note when I could.

And incase you're wondering his chances, we won't know for sure until after the biopsy results are in on Monday, but at worst it should be 50% and at best around 85%. Right now, it's looking like it could possibly be the best-case scenario. Keep your hopes up!

Friday, August 10, 2007

The Worst Day Ever

Hello. My name is Dan Kelley. You may know me as Danny Kelley. Or you may know me as Ariesgeek. Or maybe you know me as just Dan. Or maybe you have no idea who I am. Maybe nobody is reading this except for me. Frankly, I don't really care. I'm not really writing this for you, I'm writing it for me.

Thursday, August 9, 2007, is a date that will haunt me for the rest of my life. On this day, just 3 days after his first birthday, my youngest child, Andrew Michael Kelley, was diagnosed with liver cancer.

It is now 1:00am on 8/10. I haven't slept. I can't sleep. Julie (my wife, Andy's mom) and I are at Cardinal Glennon Children's Medical Center with Andy. My mother has our other two kids. Andy just woke up because he was a little poopy. Well, yeah, just a little. Right now Andy's sitting up in his bed, watching the TV wanting a bottle. He will have to cry himself to sleep, because he is not to have any foods or liquids.

Yeah, I said a bottle. Unlike his older siblings, we could not take Andy off the bottle on his first birthday. Ok, I should back it up a little further.

Since Andy started eating baby food, he's been tough to feed, but nothing really out of the ordinary. That's why over the last couple of months we haven't really been too horribly surprised that he hasn't wanted to eat.

As it turns out, the little guy has a hernia. Nothing severe, he'll need surgery, but it's not hurting him. We noticed it a week or so ago and setup a doctor's appointment. At this appointment, Julie asked if that's why he's not eating. The doctor felt his belly and noticed a "ridge". Being slightly concerned, she ordered blood work.

The doctor called me on Wednesday and explained that his results were strange. Some things were abnormal, while other things were normal. She couldn't quite put her finger on it, so she had us bring him into Glennon Thursday morning for an abdominal ultrasound.

Julie called me in tears at about 11:20-ish and told me to get to the hospital, something was wrong.

A few tears and an MRI later, it was confirmed that the little man has liver cancer. It's Stage I, which means it has not spread to any other organs, thank God for that. However, the tumor is too large for them to just go in and chop it out. He will need to undergo chemotherapy to shrink the tumor, then remove the tumor.

Tomorrow... well... today, he is to have surgery to get a biopsy and install a port in his chest for the chemo. Although it sounds relatively minor, this is major surgery. He will be taken directly to the ICU from surgery.

After a (hopefully) 1 - 3 day stint in the ICU, he will receive the first part of the first of three cycles of chemo.

The side effects of chemo are devestating, especially when you read them as a parent.

I'm not going to go into the details of some of the thoughts that have gone through my head the last few hours as I've tried in vain to get to sleep. Instead I'm going to call it quits for now and pick the little guy up, see if he will calm down a little, because I don't think he's going to cry himself to sleep.

Say a prayer or two.