Sunday, May 31, 2009

The Natural Choice

Granted, I'm not most men. I'm running into a choice that has plagued men in our society for thousands of years: work vs. presence. It's very frustrating, and I hate that this is happening.

Basically, here's the deal: I'm not going to see him at all on Monday, at all on Tuesday, and at all on Thursday. My concerts at school on Monday and on Thursday have me back at school between 6 and 6:30, which makes coming to the hospital problematic due to rush hour traffic. I'd leave school at the normal time, get to the hospital at 4, and have to turn around and leave at 4:30 to get home and dressed in time for a 6:30 report. Not so good.

Tuesday, the marching band is playing the national anthem at a minor league baseball game, and the after school rehearsal starts around 3:30 or 4:00. If I go with them as scheduled, we have rehearsal, then the bus ride to the stadium, then the game, then the bus ride home, then the car ride to the hospital. So, we're talking roughly 11 or 11:30 that I'd arrive at the hospital, in time for The Wife to be back in the room with The Boy at 6:50 to allow me travel & shower time for school on Wednesday. Not so good.

This is frustrating for me. I have several deep-seated issues about being elsewhere while The Boy is in the hospital, dating back to my older brother's death in 1986. I hate being at home or at work while The Boy is in the hospital. It's actually physically painful to me. But, what am I going to do?

For the concerts on Monday and Thursday, nothing. Do my thing. For the ball game on Tuesday, I'm going to have to do something different. We'll see what I can do. I might be stuck due to chaperone issues. Then again, I might not. It depends. This isn't exactly driving a group of middle schoolers to an amusement park. This is driving a bunch of reasonably mature high school kids to a baseball stadium, where it's difficult to get in trouble.

I guess it doesn't help that I'm nervous about the concert, nervous about kidney-killing antibiotics, nervous about starting my master's project, nervous about the baseball game, nervous about attending the awards assembly for my beloved niece on Tuesday night, nervous about the new baby coming, nervous about this and that and this and that and this and that.

If this were a simpler world, The Wife would meet me at the ballpark with The Boy, and we'd hang out there together as a family: him running around entertaining the high school kids, her sitting around being pregnant, and me enjoying a rare tension-free, competition-free night out with the marching band. The only issue would be setting up the bassinet for the new baby and cleaning the house for the bris.

If this were a simpler world. Ha. Six words, all the meaning in the world.

Staph Epi

That's the diagnosis: staph epi. That elusive second culture has finally come back with results. As The Wife and I have chronicles, the health issue we're contending with is the bacteria already present on his skin and in his body. This means that, until we / they figure this out, we aren't done with this staph thing.

Whatever. Staph is serious, but we know how to treat it. The biggest issue is that the vancomycin, the epi antibiotic, is harmful to his kidney. Can't win for losin'.

My MLB app is showing that the game hasn't yet started, when it started ten minutes ago. I was going to get up to hunt for tbs on the hospital tv, but The Boy rolled over in his sleep, grabbed my arm with both of his and threw one leg over my midsection. So, I'm stuck.

No word yet on how the epi affects tomorrow's chemo.

Saturday, May 30, 2009

"Thanks", Grandma...

Grandma found a new DVD, "The Adventures of Elmo in Grouchland," which is 73 minutes of saccharine goodness. Thanks. We appreciate you feeding our son's Elmo fixation. We'll remember that when we leave all the drums and bangy toys with him next time.

In all seriousness, Elmo isn't that bad. The message is fine, and Elmo's a sweet kid. We could do a LOT worse than have our son turn out like Elmo.

Friday, May 29, 2009

Walkathon

The Valerie Fund Walkathon is Saturday, June 13 - a mere two weeks away. It's not too late to donate, to help "Team David"! Go to https://www.thevaleriefund.com/walkathon and sign up to walk or to run, or just to donate. Just make sure that you pick donate to a team, and pick "Team David"!

I just ran 3 miles in 32 minutes, which is a decent pace for me. I'm not a fast runner, but I think I have pretty decent endurance. I get there. My stride is too short; comes from running on a cheap treadmill. I get the job done. I'm planning on running in the 5K which starts at 9:30AM, then joining The Wife and the walking team.

I should probably plan on having a change of clothes and a truckload of deodorant.

Anyway. Come run with me. I'm not fast, so don't worry about me leaving you behind.

Frustrating.

So, basically, we've discovered that the infections that have been keeping The Boy in the hospital (since April 20!!1!!1!) are being caused by bacteria on his skin and in his system, not by catching something from us or from someone else. That's good, in one sense - it's not our fault. That's bad, in that - until we somehow get this under control - we're playing Russian Roulette every time his counts drop in the middle of a cycle.

This is #8 this weekend, out of 30. Sigh.

The Boy is doing well. He's playing again, and spending large chunks of time being a Couch 'tato. ("Can you say couch potato?" "TATO!!!!" It's very cute.) Mommy's with him right now.

So, here's my schedule: test for math school immediately after my school. Then, hospital. Leave hospital around 8 to go home and run. Morning, breakfast with wife, schoolwork. Allergist appointment at noon. Appointment up in Little Falls for marching band stuff from 2:30 until 6. Hospital to actually see my son for a little while, then home. Sunday - mass first thing in the morning, then back to church at 3:00 until 6:30-ish for an Evensong mass. Then, hospital. Monday morning school all day, brief rehearsal after school, then concert at night - big, long, brutal performance with me directing 4 bands and 170 kids standing on stage in a jacket and tie under stage lights for an hour and a half. Home, pass out, back to school Tuesday morning for jazz band celebration. School, then marching band for the baseball game, then back to hospital to get ten minutes with a (likely sleeping) baby and no time for barbershop rehearsal. Oh, yeah - that's the day I start teaching my master's degree project. You know, the one that I haven't written a single lesson plan for.

Wednesday, doctor's appointment at 5. Thursday, concert at school that I'm only marginally involved with. Friday's an easy school day, then a Saturday graduation party and Sunday barbershop show, the Monday concert at school that I'm not involved in but still need to attend. That's a brutal couple of weeks, during which I'll be absolutely no help to my wife and not present at all for or with my son. That's kind of depressing.

It's the time of year, I know. It's still frustrating. I hope that some of these days he'll be home, so that I can save an hour's drive and spend that time WITH him.

Wednesday, May 27, 2009

Back in the Hotel...

102.9 temperature under his arm this morning means they left for the Emergency Room around 7:10 this morning. It is especially disappointing because this sort of thing generally means a long hospital stay, and we were supposed to have chemo tomorrow. Such is life.

He's been mostly a couch potato today, which we're okay with. If his temperature is this high, then he shouldn't be moving around too much. Right now, The Wife is at home, gathering her things for a nighttime stay. The Boy's temperature is down to 101.3 under the arm (thank you, Tylenol), and he's sitting on his playmat playing with the little piggy bank toy.

Was playing with it. Now he threw it across the mat.

He hasn't eaten much of anything today, but he's drunk a few things of juice. That's a good thing. He keeps clutching at his port; it seems to give him a consistent ache, with an occasional flash of pain. I think that the port might be infected. I don't know what they can do about it, other than pump him full of antibiotics and / or replace it.

We'll see. The Wife will be back in an hour or two, then I'm going home to run and to do some schoolwork.

Tuesday, May 26, 2009

Diet (& Exercise)

We found out today that The Boy needs to be on a "renal diet," meaning - loosely and simply translated - a diet that is low in sodium and low in potassium. I'm not especially worried about it, but it is going to cause some different things in our household procedures.

A little background: if you don't know me, you don't know how strict I am about what I eat. I was raised as a "clean your plate" kind of kid, so I tend to be extremely cautious about what I put in to my body. When I finished grad school, I was 6'2" and 220 pounds - far too heavy for my frame. I started exercising and, within a year, was down to a decent 205. The Wife & I followed the "Rock Hard Challenge" from Muscle & Fitness Magazine, and I dropped to 172. Long story short, I'm back up to around 205 to 210 right now, but most of it is "good" weight.

I'm an exercise freak, as you've noticed. Love running. Love weight lifting. Love using my body as much as possible.

The most important part of any diet plan is the exercise. I ask that The Wife not bring bad stuff into the house, except one or two little things for treats, because I'll eat them. Most days, I keep track of my food in a food journal - my livestrong.com account is open, and the user name is "chucksax." Check me out. I'm pretty good, even though it's been a few weeks since I've put anything in. That'll change soon.

The bottom line is that I eat a really good diet, particularly for a guy in his mid-30's. There's not much on my plate on a given day (except for Diet Mountain Dew, possibly the most toxic "foodstuff" known to mankind) that isn't healthy, organic, or both. So, when we're told that we need to have low sodium and low potassium in our diet, among other things, I can shrug my shoulders and agree.

Out: Ketchup (BIG deal), avocado, eating most restaurant food, eating pretty much everything frozen. Salsa. Pretzels & 99% of potato chips (seeya Pringles!).

Okay. Not a big deal. I'm a believer in the old "if he can't eat it, don't bring it in the house" philosophy. If it isn't in the house, we're less likely to eat it. We can still have bananas because The Boy hates them.

Let's see... ketchup vs. hospitalization and death. I think we know the answer to that one.

Besides, mustard belongs on hot dogs, not ketchup. Although, hot dogs are out... it's not going to be an easy road for him through the course of his life, that's for sure. He's going to be singled out A LOT for the foods that he can't eat.

Given the choice? We'll deal with it. I will NOT lose my son because of food.

Saturday, May 23, 2009

Boring, WONDERFULLY boring, Saturday

This morning, The Boy let us sleep until almost 7:15, which was blissful. It might have been later - he seemed quite content to watch Sesame Street reruns on the bedroom TiVo (anyone from TiVo wanna help us get an inexpensive deal on a 2nd TiVo? We've got a lifetime subscription on one, but this one isn't hooked up to the TiVo service, and it's annoying) until I got up because my bladder was about to explode messily.

We dressed and did teeth and medicines, then we walked to the diner for breakfast, stopping at two garage sales along the way. We're looking for a double stroller, but not in a tremendous rush. The "Townwide Garage Sale" is in two weeks, and we'll do some damage there. He was an absolute young gentleman at the restaurant, and he charmed every single person there when he walked with me to the front and handed the lady the money.

Parents - a great place to teach your kids about restaurant etiquette is breakfast. The food comes out REALLY quickly, and it's inexpensive, compared with the other meals. The other people there are generally in a better mood and are generally better disposed towards young'uns. Plus, breakfast foods are fun - eggs, and pancakes, and French toast are awesome.

After breakfast, we played for a while at home until naptime, and then the three of us napped together until around 1:30. Family naps rule. I just hope that Baby Bear thinks the same thing! We had a quick bite for lunch and went to CostCo.

CostCo is a nice walking place. It's relatively climate controlled, and there's lots of big, wide aisles for babies to get some walking done. There's lots of stuff to look at, and lots of other kids to interact with. We spent WAY too much money at CostCo then headed home.

I did some schoolwork, then chased after The Boy for a while while The Wife rested. She's starting to enter the "uncomfortable" part of the third trimester, and it's taking its toll on her. She's fine, just tired and achy. Now, I'm going to do a couple hours of schoolwork while she puts him to bed, and then we're probably going to watch a movie. Maybe even have some snuggles. Probably just watch a movie.

Why does Elmo EVER ask Mr. Noodle anything? I'm surprised that Mr. Noodle is actually dressed when Elmo visits with him.

Friday, May 22, 2009

Not as much fun as I'd like...

In a nutshell, The Boy's remaining kidney is going. We don't know when - it could be a few months, it could be a few years. But, it's as close to a medical certainty as they'll give us that the kidney is going to need to be replaced.

There's lots of protein in his urine, there's a huge potassium problem (normal blood level is supposed to be 0.2; his was 8 yesterday, down from the teens the day before), and there's a huge blood pressure problem.

The chemo treatments are extremely toxic to the kidneys, but the thought is this: if the cancer gets out of control, The Boy will die. If the kidney gets out of control, it can be replaced. Damned if you do, less damned if you don't. There's no good solution here.

I don't know why THIS one finally got to me, I feel gut-punched. This one has me freaked out. Probably because, if he's going to take anyone's kidney in the house, it's probably going to be mine. (No sense taking The Wife's kidney - she's already too healthy. No need to screw that up. I've already got issues with other parts, but my kidneys and blood pressure are sterling. I handle being sick better than she does.) So, it's now something that will likely significantly affect my health. That's a little freaky.

(Right. Like I've been the picture of mental and physical health throughout this whole ordeal. As I've said on a number of occasions, someone is going to get kicked in the nuts for this one.)

I don't want to work myself up before I have to leave for work, so emotional reactions later.

Wednesday, May 20, 2009

A little better...

His fever is still high, but not in the danger zone. It's in the "don't plan to be home in the next 12 hours" zone, but not in the "let's hook him to an IV and blast him with obscene doses of antibiotics" zone. I think the nurse is somewhat to blame - in five minutes that I was in the room before The Wife got back tonight, I saw her come in, touch him twice without washing or Purelling his hands, and then put a poopy diaper on the sink top where toiletries and sippy cups were resting.

Hello? You have a college degree in nursing?

They all can't be Tisches. Tisch is my favorite. She's cool. Then again, Debbie is all right, too, and Ruby reminds me of the Prophet in the Matrix.

Anyway, he's still cute. He still loves Dah-dee. And he gives GREAT hugs and kisses.

Darn...

I hate being right all the time. It's really a curse.

99.6 under his arm an hour ago. Down a bit now.Frustrating.

If we're still here next week, I'm going to kick something.

Lunchtime

I've stopped at home, as the drug store delivered The Boy's neupagen and it needs to be refrigerated. The Boy is still in intensive care, and they're trying to find the right mix of things to reduce his blood pressure to manageable levels. We're not getting out this afternoon, but - with luck - this evening. More likely tomorrow or Friday.

I made it to work on time this morning, which was made more difficult by the fact that a bank of elevators wasn't working at the hospital on my way out, adding about 15 minutes to my travel time. I got home, showered, brushed my teeth, and changed clothes and made it to school with about two minutes to spare.

Work's... work. It's hard to concentrate on things. My music teachers always called me a functional depressive, though, so I'll muddle through. Drum major auditions this afternoon, then honors banquet with Cousin J., then back to the hospital & let's see what happens.

It's quarter to 3...

And I'm still awake. So is The Boy. The Wife noticed that those two bottom molars - the last 2, I think - are finally peeking through, so that is what might be adding gasoline to this particular fire. Anyway, for the last 3 hours, it has been two minutes of sleep, followed by ten minutes of crying.

Frustrating, for sure. He's not a complainer and never has been, but here we are. Several times, he's fallen asleep only to have been woken by the baby next door. Mostly, it's been pain. Just now, again, he grabbed his toes and foot and calf and said "owie."

As expected, I'll be lucky to get an hour's sleep tonight. With a 16 hour day tomorrow, and another long one Thursday.

Awake again. Gotta go.

Tuesday, May 19, 2009

Here we go again...

The Boy started screaming in pain at around noon and still hasn't really stopped. He was saying "Owie" and grabbing at his right leg, the leg that got his nupagen shot yesterday. The Wife called me at 2:50 in hysterics. I was home at 2:53.

We called the doctor again, and while on the phone, The Boy tried to climb off the bed and go wandering. He immediately started screaming, so we loaded the car and left. We got to the hospital at 4, got an x-ray and ultrasound which revealed nothing.

But, his blood pressure is through the roof. Like, 140/105. So, they are checking us in for observation. We expressed concern - since his total white count was 0.2 yesterday, we are hyper-aware of the probability of catching an infection. We would really prefer that our son not catch a potentially fatal disease while in observation for blood pressure.

So, we're going into the PICU tonight. I'm not enthusiastic, because it's not likely that they'll let him sleep in a bed with me. This means that no one is going to sleep tonight.

Sigh. I regret missing the marching band auditions today, but my wife doesn't get hysterical very often. Tomorrow is not going to be fun for anyone.

At least the Yanks won tonight. That makes it a little better.

Nightmares?

The Boy had nightmares most of the night last night. He'd start to cry in his sleep, or shout out in fear (you know when your kid shouts in fear or pleasure or pain or whatever - at least, if you're paying attention). Then, he'd wake up, sit up while crying and / or screaming, and latch on to one of us until he'd fall back asleep. Last night, he wasn't a Momma's boy or a Daddy's boy; it was pretty well split down the middle. The only frustrating thing for me was, because I am a stomach sleeper, it was hard to get a decent sleep. Whatever - snuggles from The Boy are definitely worth it, particularly when he needs them. There'll be plenty of time when he doesn't want to be in the same room as us, so I'll fill my bank account with snuggles while I can. Last night, he needed them.

How does one comfort a child from nightmares when he is only 25% verbal? Some of the things that he has to go through are horrifying. I mean, your parents sticking you with a needle every single day, doctors and nurses poking and prodding, having ports accessed and deaccessed, having immensely painful chemotherapy administered, becoming very, very, very sick on a regular basis... it's only a shock that he doesn't have more nightmares, that he's normally such a happy boy.

I wonder what he'll be like when he's older. What emotional and mental issues are we inflicting upon him?

Monday, May 18, 2009

Danger Zone

So, The Boy's CBC came back with mixed results today. His red blood cell count was quite good, at 10.something. His platelets came back low at 25. His white cells were in the basement. Functionally, he has no immune system at this current time.

Scary part? His valley doesn't end until Friday. Friday will be ten days after his last chemo day, which means that he will start to recover. So, he's not going anywhere for the next couple of days. And, we do some heavy praying that he doesn't pick up any germs or viruses or anything.

Welcome to the world of chemotherapy side effects. "I know! Let's cure cancer by pumping these children with SO MANY toxic chemicals that we kill their immune systems! That's a GREAT idea!"

Grrr. Try telling a toddler that he can't do stuff - can't go outside, can't play downstairs, can't, can't, can't, can't, can't. How frustrating for everyone.

Sunday, May 17, 2009

Little Stinker...

It really is funny, listening to the biggest little "fib" that The Boy tells. When he's pooped into his diaper, it's pretty obvious - the smell saturates the room fairly quickly. We say, "Did you poo?" And he responds, "No no no no no...", which we all know is really untrue. He's quite adamant about it.

I'd be interested to find out how he interprets the question to get that response. My guess is that he hears the equivalent of, "Do you want to stop playing and get your diaper changed?", in which case a response of "no" is perfectly appropriate. I potty trained late for that precise reason, my focus on the task at hand. The Wife asks him now, "Do you need the potty?" which seems to elicit a response closer to that which we seek, namely that he has to, or has just created, poop.

I know that truth and reality are extremely fluid to young children and toddlers. I'm "looking forward" to coming home and finding a marker in his hand, a trail of ink coming down the wall and floors to where he's sitting, and receiving a response akin to "I didn't do it." To them, they didn't do it. They don't mean to lie, necessarily, they just don't remember doing it or don't understand the importance of it.

That hasn't happened, by the way. I'm just using it as an example. I read it in a magazine or something.

This afternoon, when Mommy left for her concert, he crawled up onto my shoulder for hugs and comfort. Mommy leaving - even though she always comes back - is quite traumatic. The little rat then fell asleep, leaving me trapped in the armchair for two hours. That was fine, because my father and I watched a stellar baseball game between the Yanks and the Twins - nice to see the bats and the bullpen finally waking up. Also, a little bit of history - the last time the Yanks had three consecutive walk-off wins was 1931.

When he finally woke up, we played until Mommy came home, then they ate dinner and I slept. After that, I ran a few miles, did some schoolwork, and am now going to cuddle up next to my baby boy and go to sleep.

An Utterly Normal Weekend (so far)

It's been extremely nice, so far this weekend. It's been... well... normal. No problems, no issues, no visits to the Hotel St. Barnabas. No health issues, no fevers, no chemotherapy, no IVs... just The Boy being a little boy and doing the stuff that little boys are supposed to do, like throw balls and tackle Daddy and watch Elmo and go down the slide and go on his swing and knock over piles of previously folded laundry and, in general, make the house look like a 34 1/2 inch hurricane hit it.

It's nice. It's really, really, really. nice.

Friday afternoon, I got home from school and the three and a half of us (Musical Daddy, The Wife, The Boy, and Baby Bear - technically, 3 3/4 of us) walked to the comic book store, towing The Boy in the red wagon. He loves the wagon, even if he won't wear a hat in the sun. Not good, considering that a side effect of chemotherapy is a sensitivity to the sun, but unavoidable. One cannot reason with a 21 month old. Anyway, we put a piece of chalk in the wagon with him and go for a walk.

At the comic book store, it's cute - he takes the "New This Week" signs off of the comic stacks and brings them to Miss Lena. Not to Daddy or to Mommy, but to Miss Lena. He'll bring them to Mr. Jack when Jack's working, but it was Miss Lena on Friday. Very funny; we need to bring him there on Tuesdays to collect the signs before Wednesday's comics deliveries.

We got home and rested for an hour before I had to leave to go play the musical up north. The Wife decided that that Friday would be a good night to go to the show, and she was right. They came up north, and once The Boy woke from the long car ride, he was a perfect gentleman for the entire 2.5 hour show! He loves the singing and the dancing. He was awake for most of the show, and he stayed in The Wife's lap and watched. He was such a good boy... not entirely surprising, considering that he's likely feeling the effects of chemo and feeling pretty chill, not his normal, energetic self.

Saturday morning, he was up at 6:15. We convinced him to stay in bed, watching Sesame Street on TiVo until about 8, when we gave him a snack and then went out to breakfast. He ate very well. He enjoys the "one egg meal" at the Scotchwood Diner, which is one egg (with ketchup, of course) and home fries, no meat. After breakfast, we came home and played for a while, until The Boy and I took a nap. The next several hours, once I woke, I did schoolwork while The Boy finished his nap and played with Mommy.

While Mommy rested, The Boy and I went outside to play. He is warming up to his swingset, but slowly. We did some swinging, which he was kind of lukewarm about. (Wow - Nathan Lane on Sesame Street. He's awesome, and singing a duet with three pigs.) He likes the concept of the ladder to climb, but The Boy's a little bit afraid of heights; he's nervous and scared in the little play space on the top of the set. Like, he won't stand, and he won't crawl... he just sits and whines a bit. That's fine. I was up there with him for a little while. He enjoys the slide very much, though he doesn't enjoy climbing up to go down the slide. Cie la vie.

We played in the sandbox for a while, also. He loves his sandbox, and he's getting good at using the shovel to pour sand into a bucket. Then, he enjoys dumping the sand onto his lap.

Here's a fun thought, suggested by a co-worker of mine: "Here's what you do: give your kid a big piece of watermelon, then sit him down in the sandbox. It's awesome. It's the closest thing to legalized tar-and-feathering, and, since the kid is laughing, it's legal. Just get the hose to spray them off when they're done, or you'll clean sand off the floor for a month."

Anyway, I left soon after to go play the closing night of the show. It was lots of fun to go back up there this week. I really, really like those guys and the people in that community - they're good, solid, interesting folk. Plus, there's a lot of potential in the kids in that area. I wish that things worked out differently while I was there, but such is life. I still love the people and consider many of them to be life-long friends.

This morning, I woke up in a puddle of baby pee. Looks like the diaper didn't work as well as usual. Sigh. He's still cute. Grandpa is coming over today to spend time with The Boy. I'll probably use some of that time to do schoolwork, but I probably should sleep.

Still. It's been a good weekend.

Friday, May 15, 2009

One of Those Weeks... but not THOSE weeks.

This week is one of the weeks during which I see my family for about an hour per day. It's a little frustrating, but it's one of those things that goes hand-in-hand with a career in music. There are times when things are insanely busy, and this is one of those weeks. I'm playing in the pit orchestra for the musical "Damn Yankees" at a North Jersey high school. For a 6:30 call, I have to leave the house at around 5:15. That time covers the hour-ish commute and a stop at Starbucks.

I'm still not a big fan of the Evil Empire, but their coffee is growing on me. I got, like, seven or eight gift cards for Starbucks for Christmas from my students, which was really nice and thoughtful. So, that means that when I need coffee for hospital visits, nighttime shows, et al, I stop at the 'Bucks because I have gift cards.

One of my students actually gave me a $50 gift card for Starbucks. That lasted me, like, two months. ($2.09 for a venti Pike's with room, you know.)

I also like the "Single of the Week," which is a card that lets you download a song from iTunes for free from Starbucks. I've found a couple of really neat things there.

Anyway, my schedule all week has been this: home from school at 3:15. On Monday & Tuesday - hospital days - leave at 3:30 for the hospital, leave the hospital at 5:20. Wednesday through Friday, leave for the high school at 5:15. (Tonight I can actually leave at 5:40, because it's a 7 o'clock call.) Home at 11:00. Not the best baby-friendly schedule.

The Boy has been delightful all week, as is to be expected. He's been lots of fun in the afternoons, playing on his swing set and, yesterday, going with us on a walk through the park. Today, I hope we'll go on a wagon ride to the comic book store.

Considering that we've been at the hospital every day since April 20 - that's 23 straight days, for those keeping score at home - it's been heavenly to have a couple of days without hospital trips. Just, home. We can pretend - for a little while - that we're a normal family who does normal things.

Tuesday, May 12, 2009

Valerie Fund CBS Ad!

The Boy is the first name / picture shown. How cool is this? If you've followed this blog for any length of time, then you know how wonderful this center is, and how much they have helped my family and my son.

Sign up for the walkathon, if you haven't already. Just make sure that you select "Team David." I'm running, The Wife (who will be 8.5 months pregnant at that time) will be walking.

Monday, May 11, 2009

Schooling

Just finished reading Logical Mommy's post on student performance after high school, and I think she missed one very important point and did not emphasize one point strongly enough.

First, it's important to understand that many students should not be in the grades that they are in. Simplifying that further: if a student is "supposed to be" in 6th grade, but is performing at a 4th grade level, then maybe, just maybe... they should be in 4th grade. Maybe promoting them just because they "passed" is not the appropriate maneuver.

In school, it's always easy to tell the kids that aren't in the correct grade. They're always smaller than the other students, usually be a fairly significant margin. It's the sixth grade boys, usually, who are a shade over four feet nothing. They should not be in sixth grade, and it shows: their performance in academics, in the arts, and in physical education is markedly behind the other students. I can always tell those students by the art displays hanging in the art wing of the building: unlike the other students' creations, theirs look sloppier, less-thought-out, and worthy of elementary school instead of middle school. (It's not indifference; that's easy to tell. It's lack of maturity and ability to handle the task.)

Musically, those students also stand out. They lack the coordination of their peers and always show less skill on their instruments. It's not entirely limited to boys, but the numbers skew that way. The last statistic I read said something like 85% of special education students are boys. The worst thing that the George W. Bush administration foisted on this country was the "No Child Left Behind" Act, because it says that schools' funding is directly related to how every single student performs on the standardized tests, including those students who are severely handicapped and have severe learning disabilities.

Think of the special ed kids that you grew up with. You knew them: the kids always acting up in gym or shop or art, because that was the only class you had in common with them. Now realize that your children's school funding from the government depends on their performance on the tests.

But, I digress.

If students were more accurately assessed and were taught grade level appropriate material, then the school system would likely work better. That might mean that some students do not graduate high school until they were 21; that might mean that some graduate at 16. There are social issues to work out (such as the 14 year old in sixth grade, hanging with 10 year olds who are smarter), but I think that, long term, those are less than passing a kid through school then acting surprised when they are incapable of handling normal college work.

Which leads me to the emphasis on the last point, namely parenting. I come back to a statement that I make frequently: a person of average intelligence is simply not very smart, and half of the population is below average. The "bell curve" exists for a reason: half of all parents are below average parents.

We would be best served by requiring "parenting classes" when students start kindergarten. Let's put forth a couple of postulates to argue about:

1) Your child is not your friend. They might be, later in life, but when they are under 18, your job is NOT to be their friend.

2) You are going to piss them off on a regular basis. That's your job. Your job is to tell them to turn off the television, hang up the telephone, turn off the internet, and get to work. It's time to do homework, read a book, practice their musical instrument, whatever. If they have no homework, your job as a parent is to FIND some for them to do. Quiz them on a chapter in their history book. Argue an interpretation of their English book. FORCE them to think.

3) Sports is NOT that important. If your child is spending four hours every single day at practice, then all day on Saturday and Sunday at games / meets / whatever, and if they aren't getting their homework done and are exhausted all day at school, then, guess what? They can't handle sports. This isn't true for all kids. Some can handle it very well. If your kid can't handle their homework, housework, family responsibilities, AND the travel team, then one of those things has to go. Join a rec team, join an intramural team, or take them to the track to run around in circles for 45 minutes a day.

High school sports is severely dysfunctional. I'm not going to get into that now, because it's upsetting to me. But, the problems are getting worse, and those problems are extending into middle and elementary schools. When parents are attacking referees because of something that happens in a peewee league, then the system probably needs to be blown up.

4) Punishment is NOT the answer. Punishment doesn't do anything. Instead, when you remove privileges, provide a set of criteria - a rubric, if you will - for those privileges to be earned back, along with consequences when it doesn't happen. "You will earn your video game system back when you bring me five test grades of 'A.' You will earn your cel phone back when these chores are completed for two straight weeks. When the chores are missed, the counter resets to zero; this means that the cel phone will be taken away from you until such time as we reach two consecutive weeks."

Then - here's the hard part - you have to stick to it. Are there times to allow exceptions & exemptions? Yup. They are called "special occasions" and should be special enough to warrant a change in behavior.

Anyway. Off the soap now, because it's 11PM and I'm tired.

Swine Flu?

Shamelessly stolen from The Logical Mommy's Facebook page...

The Swine Flu: A Crisis? You Decide!!!

It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly. Here is what has happened already:

--Over 100 schools have closed.

--President Obama called on all schools with possible swine flu cases to "strongly consider temporarily closing."

--Congress approved $1.5 billion in emergency funds.

--Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to prevent the spread of this flu virus."

--The Department of Education and the CDC have held conferences to give updates and advice for handling the crisis.

--WHO Director-General Margaret Chan has raised the alert level to phase 4.

--Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been distributed to several states.

--Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We'reworking together at 100 miles an hour."

--Congress has asked Homeland to consider closing the Mexican border.

Here are the numbers: There have been 84 documented cases in the U.S. There has been one death, a two year old boy with underlying health issues.

Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it.

This is a crisis and deserves a fast response. Sick children, and the death of even one child, is a great loss. But I am a little confussed. I would like to point out some comparisons.

1) Since the outbreak in the U.S., there have been 84 cases of swine flu, and one death. Compare that to the fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of the year.

2) The media tells us that the 84 cases and one death from the swine flu is a "crisis" and "epidemic". But do a google search on childhood cancer, and you will find the media consistently to childhood cancer, with 40,000 current cases and 2,500 annual deaths, as "very rare".

3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth. You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of most childhood cancers is still unknown.

4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death, then pulling back hoping they stabilize, then hitting them again. Over and over and over. Maybe a year, maybe 7 years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then you wait and pray that it all worked. "Remission" only means they think they got. "Relapse" means they were wrong.

5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered to children, using a medical assembly line system called protocols. The great need for individualized care is ignored because it is not economically sustainable.

6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 84 infected people, that is $18 million per person. Childhood cancer received a TOTAL of $30 million over a 5 year period. That works out to $750 for each child currently fighting cancer.

So does any of this scare you more than the swine flu? It should. The emergency response to the swine flu had be great. But where is the emergency plan for childhood cancer? And where is the media attention? There is none.

Some might say these are not a fair comparisons. Well, in one way they would be correct. The $1.5 billion for the flu has been paid. The $30 million for childhood cancer was approved by the federal goverment as the Carolyn Walker Pryce Childhood Cancer Act, but has never been funded. Other issues of greater crisis keep taking priority, such as $120 million to distribute free condoms in 3rd world countries (Yes, really. It's in the stimulus package).

Some might still say my comparisons are still unfair, that I am not comparing apples to apples. But, just for the record, the U.S. apple growers got $170 million in the stimulas package.

Honestly, I am not criticizing the response to the Swine Flu. It is an appropriateresponse. I just do not understand why our children with cancer deserve less.

Please remember:

1 in 300 children will be diagnosed with cancer before the age of 20.

12,600 children are diagnosed each year.

3,000 will die of cancer each year.

Cancer is the #1 disease killer of children ages 1-19.

The cause of most childhood cancers is still unknown.

Only 3% of cancer research money goes toward childhood cancers.

There are currently 30,000-40,000 children fighting cancer in the U.S.

The number of children diagnosed with cancer has increased every year for the past 25 years.

Teenagers and young adults (ages 15-22) are the only age group that have flat or declining survival rates from cancer.

In the past 35 years ONLY ONE new cancer drug has been approved for pediatric use.

Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers.

For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.

Teenagers have the highest cancer fatality rate of any age group under 80. Their cancers tend to be much more rare, therefore lacking established treatments. Their cancers also tend to be far more advanced when diagnosed.

A 5-year study at Children's Hospital Pittsburgh of UPMC recently concluded that teenage cancer survivorship is lower due in part to a lack of access to clinical trials. They concluded: "Patients who are enrolled in clinical trials offering the most advanced cancer treatments do better than patients who receive conventional treatment. Adolescents and young adults with cancer are less likely than younger children to be enrolled in clinical trials."

Carrie copied this entry off of the PAC2 Website www.curechildhoodcancer.ning.com

Sunday, May 10, 2009

My Momma

My mother passed away in June, 2001, after a long battle with lung cancer. She started feeling symptoms - pneumonia and the like - back when I was in high school, in the early 90's, but fought the good fight for about ten years before being taken from us at the age of 62. When she passed away, in the presence of me and of my father, her husband of just over 42 years.

My mother was an extraordinary woman. She finished a year of college, but dropped out to work and support her husband, whom she married at the age of 19. She worked while he finished school, then gave birth to four boys (she did, not him). She raised us with the help of her father & stepmother, who moved to Florida in the late 70's. While my father travelled on the road three days per week, she raised us by herself. Tough broad, because we four boys were more than a handful - all of us smart, stubborn, and creative. A dangerous combination, truly.

Mom got involved with local politics in our town fairly quickly, once they moved in the house in 1968 - incidentally, going into labor on the day of the move. My father still claims that she did it to avoid moving stuff. Anyway, long story short, she was the first councilwoman elected in West Caldwell, NJ, in 1979. This broke a hundred-year tradition of men-only councils, also ending the post-election celebration at Frank's Chicken House, a local jiggly joint. Growing up, I never thought it odd that my mom's picture was in the newspaper every week, nor was it odd that my mother was taking meetings with most of the Republican politicians in the state of New Jersey.

Don't boo and hiss that she was a Republican, because she - and my father - are old school conservative. That is, the government's job is defense and to take care of those that legitimately can't take care of themselves. Among Mom's accomplishments include a re-opening and expansion of the West Essex Vocational School, and the opening of NJ Transit bus lines from Newark to West Caldwell, to allow people greater access to suburban jobs. She gave hundreds - maybe even thousands - of people the ability to care for themselves and their families, at a relatively low cost to the taxpayers. Game, Set, Match... Mom.

Through it all, she remained the strongest-willed woman that I've ever met (no offense, honey). Her ability to deal with people was uncanny, and she had That Glow that those special people get. Her presence in a room caused everybody to notice her, and her character was enough to keep their attention. She was emotional, and passionate, and more stubborn that I could dream of being. I admired her greatly, and she is still my standard for judging women.

99.9% fall short.

I miss my mother. I wish that she was here to help me, to talk me down from the ledge when I need it. I wish that she had met The Boy, because she would have fallen deeply in love with him. I know that she would have been an amazing help with The Boy's treatments, and she would have busted heads in Philadelphia far beyond anything that we accomplished.

Plus, the hard-cord extreme wrestling fan in me would have LOVED to have seen my mother-in-law and my mother butt heads. Not that they would have over anything important, but it would be the classic Immovable Object vs. the Irresistible Force.

Happy Mother's Day, Mom. I miss you.

Star Trek ROCKS

That was an amazing movie. Right up there with "Wrath of Khan," definitely better than any of the non-Khan original series movies. If I didn't have a kid in the hospital and a master's degree due SOON, I would go see it again. Lots of fun, great effects, great shoutouts to the original movies... worth the price of admission.

The Boy is fine. Chemo is easier than the other hospital stays. Grandma & Grandpa have been amazing.

Friday, May 8, 2009

Scrubs Finale (no spoilers)

Scrubs is an amazing show. I won't say "was" an amazing show yet, because I haven't heard that abc was definitely not bringing it back. Still, having seen every episode multiple times, I can say a few things about the show as a whole, and the finale in specific.

Very few shows - actually, none that I can think of - bring me to tears as reliably as Scribs does. Even episodes that I've seen a dozen times have that effect on me: I feel for the people in the show, patients and doctors and staff alike.

It doesn't help that I'm in a hospital as often as we are, I guess. After living through my brother and mother passing away like they did, and living through the diagnosis and treatments of my son, I've felt my fair share of disappointment and dismay. When the people on the show are coping with these issues, I feel like I am as well.

It was a great run of a show. Wonderful, interesting and dynamic characters, truly. Zach Braff and crew created a wonderful world there at Sacred Heart Hospital.

Out with the new, In with the old...

So, more of the "same old, same old." We're in the same room that we've been in for three weeks. We're getting the same chemo we've gotten for six months. We've got the same routine down to a "T." What's the difference? meh. Nothing.

I was given clearance to resume exercising today. I've been off the exercise thing since the beginning of April, when I got the mole & cyst removed from my side and back, respectively. Now that one is a little scab and the other is far less of a gaping hole in my back, the surgeon told me to go nuts. Tonight, I did a nice 50 minute workout - a 25 minute run followed by six quick sets of lifting. It probably would only have been a 40 minute workout, at best, had I not taken a break to figure out why my computer was making odd noises. Whatever.

I got an hour or so's worth of work done tonight, as well - knocked off a three page paper for math school and did some reading. The paper only took me about a half hour, which was a long time considering that most of the project I had already done in a previous assignment for a different class. So, I plagiarized myself, answered the remaining question, edited, then saved. I'll re-read and turn it in tomorrow.

The Boy was quite cute and quite engaging, as usual. We got in some nice snuggling and some really good playing. He's getting to be quite talkative, parroting quite a few things that he hears from us. (Meaning, when I watch baseball, I need to turn my "teacher filter" on. Students of mine, stop laughing at the concept of my "teacher filter." You should see me when you're not around. Kind of like what's-his-name from "Full House.") I swear that I heard him say "Wanna Play!!!" today, which was the first "sentence" that I ever heard him use. The Wife wasn't listening, so she missed it.

Funny bit from the evening: he ate a BIG dinner - the entire serving of rice, about 95% of the chicken leg & thigh, and quite a bit of broccoli. (Nice that he's back on broccoli, incidentally.) Grandma sat down with him to play while she was eating her dinner, and he ate her entire noodle kugel and quite a bit of her apple kugel. It was really funny, considering that - after grabbing two pieces with his hands - he bogarted her fork and finished the job.

We must not feed that child.

It's amazing how our concept of "lucky" and "good" has changed. We're lucky that he's in chemo this weekend, and it's going to be a good weekend with him in chemo.

Tomorrow: STAR TREK STAR TREK STAR TREK STAR TREK. I'm already geeking out.

Here we go again...

Anyone seen that video? The song by Ok Go? The one with the treadmills? It's really quite cute.

http://www.youtube.com/watch?v=pv5zWaTEVkI

They left for the hospital for chemo at around 11:30 or so, and we're back in the same room - 4224 - that we've been in for the past three weeks. This is a five day chemo.

Interesting: my wife noted that he had developed a little bit of the drop-foot that he's struggled with (thank you, vincristine). My theory? He hadn't walked, essentially, for three weeks. I mean, he can do a little bit of toddling from bed to the high chair, but that's about it. That's going to cause rusty-ness to set in, which took him a day or two to work out.

Sigh.

Thursday, May 7, 2009

Marching Order (Hurry Up and Wait)

So, we're going to go in for chemo tomorrow. The wheels have been set in motion - Grandma & Grandpa are coming in from Pittsburgh, a volunteer from Chai Lifeline is coming in the morning, and I'm driving The Wife and The Boy to the hospital before school. We'll have breakfast in the cafeteria before admittance time.

But, wait... literally. They haven't gotten the creatinine clearances yet. Until they get that approval, we're on hold. So, wait on Grandma & Grandpa, pause on the volunteer, and hold off on the ride with Musical Daddy. We're not going anywhere.

Meanwhile, The Boy still has a catheter inside of him and has his port accessed. The poor thing has tubes where tubes ought not to be. He napped with us again this afternoon. I could get used to that. I won't, because I know it won't last. However, the extra hour or so of sleep is amazingly restful.

I have another 7 minutes to make the decision about choir or no choir. I should go, because I can't go next week because of a show in which I'm playing. I shouldn't go, because I'm exhausted and would like to rest. This weekend won't be restful because The Boy will (likely) be in for chemotherapy. This might be my last chance to take it easy until next Wednesday... if chemo starts on time and if he's actually allowed to go home from the hospital. If If If If If If If If If.

That's a whole lotta pee...

The Boy has a bag strapped to his leg that is collecting all of his pee, from 1:30PM yesterday (when he was catheterized) to 1:30PM today, when he will be de-cath'd. The bag is filling up alarmingly quickly; while he was able to do most normal activities yesterday - walking, playing, the little running that he does, walking through the waist-high grass in the back yard - he will likely be limited this morning, due to the sheer weight of pee.

It's a good thing, as he was starting to look swelled on Monday due to the amounts of IV fluids. He's starting to slowly de-swell, just in time to be re-admitted tomorrow morning. Sigh. Whatever. We do what we must. This morning, he looked swollen around the eyes and the cheeks. He looked better than last night, fortunately. We'll see what happens by the end of the day.

The reason he has SO MUCH pee? Just getting the fluids and antibiotics out of his system is causing an increase in fluids.

De-cath'd at 1:30, and we'll hopefully get the walk in the park working, depending on the weather. If we get rained out, maybe we'll go to CostCo, or maybe we'll just go home. If today is anything like yesterday for The Boy and The Wife, then I'm skipping choir and staying home to help care for each other. If today goes smoothly, then I'm going to choir. I need the money; I need the snuggles more.

Wednesday, May 6, 2009

Days that Don't Suck

I got home from school at 4:20 to find The Wife and The Boy asleep in the chair. I changed clothes and fell asleep in bed. They joined me a few minutes later, and we napped until six. Uncle P came by and did my lawn, which was amazing of him.

We played outside a little bit, then The Boy had steak for dinner. We played for a while, ate ice cream, and played some more. Now, I'm watching Lost while The Wife put him to bed.

Best afternoon in three weeks. I might play hooky from choir tomorrow to spend more time with them.

Days that Suck

They installed a Foley catheter in The Boy today at the Valerie Fund Center. To be more specific, they installed three different Foley caths this morning. The first two catheters failed to collect any urine, and a nephrologist himself had to come in and do it.

That's going to cost me $300, as apparently he's out-of-network. I don't understand that, because he's at St. Barnabas, which is in network, along with all of his other oncology doctors. Sigh.

How much does that have to suck? My wife was less than thrilled with the whole thing, and I'm a little nauseous thinking about it. He was apparently okay with the whole thing, relatively speaking. G-d only knows that that isn't the worst thing that has happened to him this week.

We will be collecting urine for 24 hours and pouring it into a jug. Fun. Yes, ladies and gentlemen, the romantic and unconditional love that parents and children have for each other: we will willingly and enthusiastically collect our son's pee and dump it into a jar for further collection.

Man, I'm just tired. Seriously emotionally numb. I honestly don't know how I'm going to make it through the end of the school year.

A whole (somewhat) new ballgame

With The Boy doing as well as he has been doing since the Thanksgiving fiasco, it's been easy to sit back and think that he's a normal kid with some weird private activities, namely spending a week a month at the Hotel St. Barnabas for some quality time with Grandma. It's months like this that we're snapped back into the very, very cold reality of the fact that my son is desperately ill. Not only that, but it's easy to focus on the whole cancer thing and to forget that he's a kidney patient, also.

As Dr. Rifkin said, way long ago, we are truly choosing our poison. Either we're risking that the cancer is going to kill him now, or we're risking that chemo side effects will give him leukemia or some other nasty cancer later, or we're risking that the chemo and radiation will demolish his remaining kidney and give him dialysis or someone else's kidney at some point between 2010 and 2045. Yes, there's a small chance that he could get through with no cancer side effects and no major lifelong kidney side effects, but there's also a chance that the Kansas City Royals will win the World Series this year.

(For the non-baseball fans, that means the chance is less than or equal to a snowball's chance in h-e-double-hockey-sticks.)

The Boy is on three drugs right now, designed to keep his hypertension under control. Hypertension is caused by the kidneys, of course, because the kidneys regulate blood pressure. Kidney distress like The Boy's = high blood pressure, and The Boy's BP has been dangerously high at points over the past week or so. He's taken them somewhat willingly, for the most part, although last night he fought a bit.

We had to buy a home blood pressure monitor to keep an eye on The Boy. It's somewhat comparable to the hospital numbers; not lifesaving accurate, but accurate enough that if it spikes or dips we can alert the authorities. Scary, no?

He's home, and they got home around 9:30 last night. He'll be back at the Valerie Fund Center at 9, and likely spend the day there today and tomorrow. They need to Foley catheterize him on Thursday, and we need to collect a full day's worth of urine to check for protein accumulation. Yum yum - dumping The Boy's pee into a jar, while he wears a big straw stuck up his urethra. Gotta love it.

But, at least he'll get to play on his swingset today. That's very, very important. And, it was REALLY nice to get to snuggle with my whole family last night at bedtime, even if The Boy is still a Momma's Boy right now.

Tuesday, May 5, 2009

Dangerous question...

If we're having problems controlling his blood pressure, is taking him home a good idea? Or, would it be smarter to leave him in the care of the medical professionals? I don't know. I don't think there's a good answer for this one, to be quite frank.

ZOMG. What a freaking life. As my father says, children don't come with instruction manuals.

Scared.

Blood pressure's sky high this morning. Protein's in his urine. He threw up before breakfast, although he resumed normal eating a half hour or so later.

This is starting to get really scary. I mean, I >think< we have it under control, but this makes me wonder. What if the blood pressure isn't being caused by an excess of IV fluids, like we suspect? What if his blood pressures DON'T go down when / if he comes home tonight?

I know, I know. "If if's and but's were treats and nuts..." I don't frequently let myself go down these paths. I'm bothered by that, and by a horrendous nightmare I had last night, where - for no real reason - The Wife just up & left me. I know it was just a nightmare, and likely significant only because I'm afraid of losing my son (and have been for the past 11 months), but it still has shaken me up pretty badly. It exposed a lot of nerve endings, you know, and hearing news like this doesn't help.

It's not often that a nightmare shakes me up like this... Ugh.

Monday, May 4, 2009

St00pid hospital stay...

So, since we're still in jail at the Hotel St. Barnabas, life smacked me in the face at about 9:15 last night. My mother-in-law sent us home early, and I left the hospital at around 8:00. My wife followed about fifteen minutes or so later. I got home, updated the iPod & set the TiVo to download a few more programs (I'm two weeks behind on "Reaper"), then I shaved / showered / toothed my way towards bedtime. As we were watching the first episode of South Park that TiVo recorded in March, it suddenly hit me that it was May 3 and I hadn't paid any bills yet this month.

Most of our bills are set to automatic - insurances, mortgage, cable & telephone, cel phone, student loans, and electricity. However, the two most irritating bills to be late on - the two credit cards that we use - are NOT set to automatic pay. Grrr. One of the cards is never due until, like, the 8th or 9th, so it'll be okay. I'm just hoping that getting the bank to wire a payment today will catch the other credit card in time, particularly since that's the card that the swing set (all $1700 or so worth) is on. Irritating. Considering that I haven't missed a payment or been late on a payment since, like, 2004 or so, I'm assuming that things should be fine - particularly since it's a "my kid's in the hospital so I lost track of the date" thing. We'll see. I hate to play the cancer card, but I'm going to play the cancer card if need be.

Still, it's annoying to have to spend an hour and a half or so updating my bills instead of being at the hospital. I know that's why my mother-in-law is here, but it's frustrating to NOT see my son while he's awake and happy. I don't always want to do my schoolwork and my housework while he's awake; love the sleepy-snuggles, but I love playing with him just as much.

Yesterday, we played ball for a long time. He was sitting on the bed, and he'd throw the ball off of the bed and in my general direction. I'd then catch it and bounce it back at him, frequently off the top of his head. (It's a soft bouncy-type ball.) He'd laugh a lot, then throw it back. He played with everybody in the room, which was REALLY nice to see.

I want more.

Sunday, May 3, 2009

As promised...



The interesting thing about the hospital is how difficult it is to rest in one. There's a constant stream of intruders in the room (nurses, doctors) that come in at semi-random times, usually when it's most inconvenient. There are multiple visits per day from nurses getting blood pressures and temperatures, and dispensing medications. The cleaning staff comes by twice per day, once to clean the floor and once to empty the garbage. The food people come by for breakfast, lunch, and dinner, and to pick up the trays, and to pick up the menu.

In addition, there's beeps and boops from the medication and IV dispensers, from the doorways outside, and from other rooms and the nurses' station. The nurses usually come by quickly when buzzed, but occasionally take some time. We know how to turn the beeps off of many of the machines, but not all of them.

In addition, there's one bed. There's a chair that can pull out / fold out into a "bed"-like thing, but it's horribly uncomfortable and inconvenient. So, it was a surprise when I walked into the room, after doing schoolwork, and found The Wife and The Boy asleep in the bed, and Grandma asleep in the crib.

I've done it, also, but it was funny because she fits better. I was tempted to close her in the crib, but I thought I'd get in trouble.

But, sleep is difficult. So, it was a surprise when I came

Wine, Women, and Song...

Well, Song, anyway. Wine was possible, because they had a bar at the convention, but I'm not a drinker. Women? Not really. Two wives of friends of mine, but they don't really count as women in that sense. I mean, they're not dudes, but it's not like I'm looking.

This weekend was the barbershop convention. The division contest was held in Scranton, Pennsylvania, which is about two hours plus from our home in central Jersey. After school, I stopped home to pack, then I left around 5:00 to head into Pennsylvania. It took a little more than three hours due to weekend traffic, which was annoying.

Here's the fun part: there is a LOT of friends that I have that I don't see much, outside of this and two or three other yearly barbershop events. It's something that I look forward to for months ahead of time, because these are great guys that happen to live too far away for a normal relationship. I look forward to getting together with these guys and spending the night until 3 or 4AM singing tags and songs and just hanging out and being a guy.

Here was my weekend: show up to the hotel, drop my stuff off. Go to the quartet contest Friday night to see the two quartets from my chorus sing, then go to bed. Asleep by 10PM, slept through until 7 the next morning. Did the chorus contest thing (VERY happy with the results - a score of 64 for singing, which is a near 10 point improvement from last year), done at 3. Napped until 6:30. Sang in the evening show, left immediately after singing. At the hospital at 10, stayed for fifteen minutes, home and asleep by 11:30.

Exciting, no? I'm STILL dramatically underslept. It was nice to have a night not kicked by a baby, but it's frustrating to be so far away from my family, in the hospital.

The Boy is doing okay. Chemo was pushed back into next week because of low platelet counts, and he received some red blood on Friday. That's concerning because it's very late in the chemo cycle, but the doctors say that it's a normal delay, likely due to the amount of antibiotics and infections in his system. Mild fever today - a temperature up to 99.4 by the midafternoon. Don't know what it is now, because that was two hours ago. Everyone's asleep right now, including Grandma curled up in the crib, which is worth its weight in gold. A picture will follow.

I think Grandma is sending us home tonight, for which I'm immensely grateful. Don't get me wrong - I'm happy to stay and relieve her. I'll do whatever is necessary. Right now, I'm healthy - but I know that that won't last. I'll crash eventually and be useless for the better part of a week, so I want to get in the work while I'm capable of it. Still, it's nice to go home and have a fighting chance to get some sleep. Not likely, but a chance exists.

Chemo will start at some point. Likely Tuesday, maybe Wednesday. I wouldn't mind Tuesday, as it would give the last night of Diaper Hell on Saturday night. Sunday as an exhausted mess is easier to deal with than Wednesday as an exhausted mess. Plus, we REALLY want to go home. He's doing well - playing nicely, talking up a storm, flirting with the womenfolk. It's cute.

I need more coffee if I'm actually going to think.

There's another family that's working with the Chai Lifeline on the pediatric floor. We've given them our contact info through the charity folks, and I hope they contact us. More cancer friends...