Tuesday, March 31, 2009

Late Night Thoughts...

Is it just me, or do most people do their best thinking late at night, when they should be sleeping? I know that I certainly do. When I tell people that I want to sleep on it, I'm really not kidding - my brain works the best when it's given a chunk of time to decompress and follow through to the end of a thought meme.

That doesn't explain why I feel the need to cram so much media into my head on a daily basis - multiple podcasts, music, television shows, movies, books & magazines. That probably addresses deep-seated insecurity issues, but I'm not willing to go there.

Anyway.

The Boy was very, very cute yesterday. When I got home from my teacher's workshop, I was more than a little bit stressed out and irritated. Teacher's workshops, for the uninitiated, are a waste of time for the non-(math/science/social studies/language arts) teachers. Everything is geared towards the "academic" subjects, and the other subjects are basically told "adapt what you need to adapt, but sit down and shut up regardless." Yesterday was no different. We learned about "useful websites," which meant websites that had absolutely nothing to do with music.

(Correction: one website had words to sing to memorize a few social studies or language arts things. That's "musical." Granted, it teaches as much about music as refilling wiper fluid teaches about fixing a car, but it still technically involves music.)

So, after spending 120 minutes subtly checking my e-mail and keeping up with the Yankees game, I got home to a wonderful sight: a funny little boy calling "Daddee! Daddee!" and running up to the gate. What a great way to be welcomed home! We had such a fun time in the afternoon and early evening, eating dinner, playing with a ball, wrestling a bit, and chasing each other around the house. He was fun, smiley, and talkative. He started to peter out around 7, when I left for Panera Bread and two hour of schoolwork; The Wife said that he fell asleep around 8PM.


Today, I got home from school in time to catch the last bit of occupational therapy. I'm not entirely sure what they were doing. The OT was helping The Wife play with The Boy, drawing on the chalkboard and the marker board, play with toys, carry books around, and drink juice from a sippy cup with straw. She did spend copious amounts of time complimenting The Boy on his progress: his walking is looking much, much better, with FAR less drop-foot and duck-walk than he was showing earlier. In addition, she said that he's advanced in his drawing - he can scribble back and forth and make swirlies on the board, which is a 2-year-plus skill at 19 months. Not surprising to me; ego aside, my wife and I are on the far end of the IQ bell curve, and I expect nothing different from either of my sons.

(And, yes, you heard me say that my son knows the swirl. That's pretty remarkable at his age.)

Anyway. It's getting close to midnight, and I have school followed by a 2-hour rehearsal tomorrow. I'm going to liveblog my evening with The Boy, if anyone's interested.

Monday, March 30, 2009

I love my wife...

My school is about a block away from Trader Joe's, a really cool grocery store. When my wife goes to Trader Joe's, she will stop by my school and call me - let me come out and give The Boy a hug.

Today, he wasn't so much into the hugging - but he did give me a kiss on the cheek. What a cute kid.

The Boy is a STAR!

Ain't he cute?

Sunday, March 29, 2009

Swing and a Miss...

Today, we tried to bring The Boy to The Wife's orchestra concert today. They were playing a romantic overture, a viola concerto and the Berlioz Symphonie Fantastique - not the most adventurous program, but a decent program nonetheless. The Boy just wasn't having it today. He started chirping around three minutes into the overture, and he only got louder from there. I didn't want to be THAT GUY with THAT BABY, so we waiting in the hallway until he calmed down or until the intermission came. The intermission came. We said hello to Mommy, then The Boy and I went home.

The rest of the afternoon went fairly well. We played - or, more precisely, I chased him around the house - for a couple of hours. We did have some nice snuggle time while watching Classical Baby - The Dance Show. Mommy's home now, and we're making some dinner.

He's been very good, yesterday and today, at saying "Thank you" when he gets something. The cute thing is that he also says Thank You when he hands something to one of us - he doesn't quite understand the concept. He's also giving kisses - like, real smacks on the cheek. Afterwards, he smiles very proudly.

Very cute.

Saturday, March 28, 2009

Adsense

Just got an e-mail telling me that Google's Adsense reached $10 for the first time. When the account reaches $100, we'll apparently get a check...

So, click on the Adsense ad on the left side of the page, please. It'll make us money. You don't necessarily have to buy anything, but - if you do - I'm told that it's quite good to us.

And, if you haven't clicked on "Follow This Blog," please do so. You do have to have a Google account, but the accounts cost nothing. They don't spam.

Thanks!

Afternoon Delight

After The Wife got home from her errands, we rested for a while, then walked to the comic book store. The Boy spent time plucking the New This Week signs off of the wall and giving them to Miss L, the store owner.

When we got home, we played with the sidewalk chalk for a while. The Boy loves climbing around and making marks on things. The Wife told me that he was saying "please" and "thank you" when they gave chalk to each other.

Now we're inside, watching the video of "Passover at Bubbe's." Not one of my favorites, I can tell already. The Boy is draped across my belly, sucking his thumb and driftig towards sleep.

Dollars to donuts says that the magazine people call soon.

Harrassment

I've just received the tenth (count 'em, tenth) telephone call from a service to renew some magazines, all since 5:00 yesterday afternoon. Best part of this one was the fact that I had just fallen asleep with The Boy after wooing this particular nap for an hour. Now I'm awake.

I wonder how many telephone calls it takes before it becomes legal harrassment or stalking?

Friday, March 27, 2009

Mental Note

When the toddler brings you a can of soda, don't open it up right away.

Sploosh!

Lesson learned.

Interesting Day

Got home at 4, after my dentist appointment. The Boy and The Wife were drawing on the driveway with chalk. It was very cute, considering that The Boy was pretty well covered in chalk by the time I got home.

We tried to rest for a little while, but he was having none of it. After an appropriate length of time, we gave up. I had dinner ( I was starving ), and we went to CostCo to walk around.

He did a nice job. He walked for a while, and he seemed to enjoy walking the aisles and looking at stuff. After an hour, we came home.

I was downstairs updatng the iPodwhen I heard it starting. it turns out that one of the nurses at the Valerie Fund Center tried to force The Boy to take his pre-transfusion Benadryl orally, and he was not interested. When The Wife tried to give him his medicine tonight, he responded with violence and threw up the medicine and everything he had eaten since lunchtime. Great.

After we got that cleaned up, we gave him a quick bath. He hung out with me in the bedroom in only his diaper, until I noticed that he had taken the diaper off and was walking around nekkid. That was very cute until I saw the poopy diaper on the floor.

Some days we just can't win.

Thursday, March 26, 2009

We are lucky...

Tonight, The Boy came with The Wife and me to a Dapper Dans board meeting and to a choir rehearsal. At the meeting, he & I ate dinner, which went as per normal. No worries, and he played in the family room with Mommy after we finished eating. The choir rehearsal went... well...

We are SOOOO lucky. We have a kid that can play by himself AND enjoy listening to music, particularly live music.

He was wonderful. Everything was good - he bounced between my wife and me, wanting to be held for a little while before wanting to explore. He got ahold of a roll of paper towels, which was funny, and he enjoyed playing with the magnets on Mr. K's file cabinet. He explored the contents of the top of the desk, and he climbed around a clothing rack while playing with his toys. He enjoys pulling books out of shelves, and he did that with the music racks. When he started pulling pencils out of music folders and trying to draw on the music, we had an issue; however, it was relatively easily solved.

He's just a good boy. He's good natured and has a sweet disposition. He can entertain himself for a long time (for a toddler), and it makes our lives SO much easier. For instance, I couldn't imagine the cancer treatments with a child who is uncooperative, demanding and really dependent.

All right. It's 11:40. I'm tired and need to go to bed. Today was morning jazz band - school - rehearsal - board meetings - rehearsal, and I'm exhausted. Tomorrow is going to be a fun a day, with interesting things happening, and I'd like to be somewhat awake for it.

Wednesday, March 25, 2009

42

My brother David would have been 42 years old today.

I'd like to say that I knew him well, but I was only 11 when he died. He was A Big Brother, one of three; he was nicer to me than P was, but not as nice as B was. I remember his laugh, and I remember wrestling with him a few times. I remember getting yelled at by him, because he wanted his books treated a certain way. He and I both enjoyed Dungeons and Dragons, although - truth be told - he was better at it than I ever was. I'm not very imaginative in that fashion.

I remember spending time with him and his girlfriend. They were nice to me most of the time, even though I thought that they made out a little too much. I was just too little, too young, too wrapped up in myself to really get to know him well.

He was my father's favorite. Why wouldn't he be? He was the most popular and had the most friends. He was also the only one of us that had a long-term girlfriend in high school. He loved taking things apart and putting them back together again; sometimes with left over pieces. He loved fantasy novels and was a HUGE Lord of the Rings fan; I probably get my love of those books from him, as he was very generous in lending copies to me.

When he died, he was a month shy of his 19th birthday. It's hard to believe that almost 25 years have passed since then! It ripped my family apart, and it took a long time before the fabric healed itself. I think we're stronger because of it, although it's not the family bonding method that I would truly recommend. Now, with a child who is fighting against a life-threatening illness, I have a much better understanding of what my parents went through.

We named The Boy after my brother in the Jewish tradition of naming babies for deceased relatives; we gave The Boy my grandfather's middle name for the same reason. We balanced out the loss of a young life with an old life to appease the superstitious. We'll see.

I miss David. I wish I knew him better, and I wish I had more stories to tell. Heck, I don't even know how many of my memories of him are accurate and aren't just fabrications of a young, grief-stricken imagination. He was my brother. I grew up with him, and I loved him.

Happy 42nd birthday, big brother. I think you'd have loved your nephew.

Testing

The Boy is currently asleep on my chest. I tried to do the whole bedtime thing with him: relaxed playing after 7, teeth and vitamins, in his room to change into pajamas, read his books... Nope. Wasn't happening.

Then again, it has been three weeks since he has slept in his bed. What do I really expect?

I don't know. Tonight was frustrating. I'm not entirely sure what to do with him. I've been spending so much time at work and school lately. It is kind of depressing, actually.

Just a bump in the road. No biggie.

Tuesday, March 24, 2009

Tuesday, Tuesday, Tuesday.

The Wife dropped my car off at the local Firestone at 7AM this morning to get the oil changes, tires aligned & checked over. She then came home to go to the hospital to be with The Boy; the in-laws picked her up from the service station, and my father-in-law was to drive me to the service station. The Firestone people called me at 10:30 to give me info about the car; I was teaching and couldn't respond. Long story short, the car's not ready and my in-laws are leaving in an hour. So, if I can't get a lift to the service station at 5:00, after the auditions, then I'm taking a cab over there.

Chemo started late today - not surprising, as the pharmacy at the hospital is notoriously slow getting medicines out. This means that we won't be done until after 9PM this evening. The good news about that is that I can leave my rehearsal early so that I can pick up The Family from the hospital. The bad news is that Diaper Hell begins at 11 o'clock or so, and there's no letup in my schedule over the next couple of days. After an 18-hour day today, I'll be up most of the night doing Diaper Duty, then have a 12-hour day tomorrow and an 18-hour day on Thursday. Sigh.

Yesterday, The Boy was really, really funny. He resembled a ping pong ball: he bounced from one side of the room to the other to the other to the other, non-stop, for hours at a time. He was happy and laughing and playing, even if his appetite was not great. I enjoyed watching it, and playing with him, very much. What a cute kid!

It's a little more difficult to keep him in the hospital room now that he's more mobile. He doesn't really want to stay on the playmat, and he certainly doesn't want to stay in one place for very long. On the good side, the fact that he's walking means that he's spending FAR less time touching the hospital floor.

Eh. We'll see. I just don't have much to say right now.

Monday, March 23, 2009

DIfficult Couple of Days

So, over the next two days, I don't anticipate to see The Boy for longer than a couple of hours. I'll see him this afternoon for a bit, but I have auditions & barbershop after school tomorrow so won't be able to help out in the slightest. That'll be the tough part, getting him moved out of the hospital without much help.

Last night, he was "Mr. Up-All-Night" again, but this time without the whole screaming-in-pain thing. One out of two ain't bad. He took a really, really long nap in the afternoon, which I suppose threw his sleep schedule off. We'll see.

Full school day, some after school stuff, then head in to the hospital until it's time to go home and do math work. Sigh. I think I'm coming down with something, but it could be the fact that I've had one decent night's sleep in the last several weeks.

Sunday, March 22, 2009

Grumpy.

I'm irritated today.

I'm not irritated for any particular reason; I'm just feeling prickly. Little things, which would normally slide off of my back, are sticking in my craw, and I'm ready to start fights. My humor, which is normally somewhat... edgy... is trending towards the vicious.

I'm tired.

I got decent sleep last night, all things considered. While it's hard to wake every other hour to take care of diaper business, I still got a solid five or six hours of sleep. That should be enough, considering that I got eight hours on Friday night.

Whatever.

Reviews are coming of two important things: the Battlestar Galactica series finale, which was Friday night; and Watchmen, the movie made from the comic book series. In short, I loved them both immensely and can't wait for the director's cut DVDs.

The Boy was fine. He didn't fall asleep until 11 o'clock, which we expected considering his nap schedule in the late afternoon yesterday. He didn't stir during the 1AM changing, but he woke at 3AM and screamed like he was bitten. That would be the second night in a row that he did that. After twenty minutes or so, I got him calmed down. The pediatrician came (she had to finish a spinal tap before coming), and that irritated him further. We gave him some Tylenol.

He was grabbing at his feet and his legs. I'm not sure if that is where the pain was located or if those things happened to be convenient to grab. When I touched him, he freaked out. He was back to sleep around 4, and I followed soon after.

It wasn't the worst night I've spent in the hospital with him, and it wasn't the best. I did allow myself the luxury of letting the nurse do the 5AM changing so that I could skip waking up.

Thursday, March 19, 2009

Chemo This Weekend

We are going to be in the hospital from Friday to Tuesday for chemo. On one hand, I'm not too happy about that, as chemo just plain sucks. It's hard on The Boy, and it's hard on us. It's just plain not fun.

On the other hand, it does make certain things easier. For instance, Saturday morning, I have a fighting chance of getting eight hours' worth of sleep. Not so simple with The Boy sharing space with us, you know? It'll also be easier to watch the Battlestar Galactica series finale on Friday night, and we'll use the boy out of the house to give the upstairs a thorough scrubbing. I'll also catch up on some schoolwork, which I haven't been able to do over the past three weeks.

I feel bad about putting most of the hospital stays on my mother-in-law and my wife, but it's somewhat unavoidable. This math degree - which, for the record, I am not going to finish when I suspected - takes up a lot of time, and it's nearly impossible to get work done at home with the baby at home. Combine that with the whole "job" thing, and life becomes that much more difficult.

I cry a bit about the restart of chemo. The Boy's made, like, seven or eight major milestones since the last hospital stay, and I'm sure that it's because he wasn't on chemotherapy. His eyelashes are back, his eyebrows are back, and he's grown some peachfuzz on top of his head. All that'll be gone by next week. He'll be back to feeling crappy, and we'll be back to giving him shots of nupagen.

Here we go. Nose to the grindstone again. Three months down, 21 months (plus any additional radiation treatments delaying things) to go.

Then a lifetime of paranoia.

Fun.

Wednesday, March 18, 2009

Mr. Up-All-Night

Hard playing this afternoon at a playdate, no nap in the afternoon... this should equal an early bed time for The Boy.

Nope.

We did share some ice cream, which the currently preferred method of giving him his medication. He's now prancing around the room, shaking a couple of Trader Joe's pressed fruit bars and spinning around in circles. I'm not intending on giving him any more food, but it's certainly likely that he'll earn some by being cute or just by being smart enough to rip open a package.

He's spending most of his time walking around now, and lots less time crawling. His walking has gotten quite good, all things considered. He had occupational therapy today, which went well.

On the good news front, it looks like I have a job for another year. The economy is costing a handful of jobs from my district, but I'm pretty safe. At least for one more year.

Monday, March 16, 2009

Wash his mouth out...

This isn't what you think. Contrary to the fact that I have difficulty controlling my vocabulary, I've been pretty decent about not cussin' in front of the baby. My wife's been good about it, also. We've slipped up - we're only human - but not more than many families.

This afternoon, I was playing a video game on my iPod Touch while The Boy was exploring in the bedroom. The Wife was in the living room. I heard him unwrap something and take a bite, then exclaim loudly. This was followed by a little vomiting. Turns out, he unwrapped and took a big bite out of "Burt's Bees" soap. Heh.

His appetite wasn't too good at dinner time, which might be normal toddler fussiness or the remnants of soap on his teeth. Whatever. He's eating now, a rice cake with some honey.

Heh. Wash his mouth out with soap. Heh.

Sunday, March 15, 2009

OCW

A few years ago, a lady used to say was "OCW," which stands for "Our Child Won't." This was, of course, in response to certain kids choosing to behave like knuckleheads, as children will. You parents are chuckling at this, I hope, as you realize that the best child will occasionally lose their mind. She obviously was inexperienced when dealing with children, and - frankly - hasn't grown more experienced despite having one of her own.

Anyway, as my wife put it, this morning The Boy was "That Kid." He was a knucklehead at the diner this morning. He was trying to play with all of the stuff that he shouldn't play with, and he was loud and extremely vocal. Not such a huge deal, although it was combined with a lack of appetite. This meant MUCH more time that he spent messing with stuff instead of eating.

Sigh. Whatever. Ironically, it was a saxophone teacher that I had in college that taught me about this exact situation. His son was a little older than David when I began studying with him, so he was dealing with some of the same issues that we, and all parents, deal with at this age. He said that the biggest challenge was remembering that every kid is going to act like a knucklehead and that this behavior does not reflect back on you as a parent. People that give you dirty looks because a kid is throwing a tantrum or having a hard time at a restaurant are ignorant or childless or both. Kids are going to behave badly on occasion.

So, we didn't freak out, and we're not mad at him. We didn't try to control his behavior, which is not possible at 18 months. We didn't get frustrated and yell at him, and we didn't try to make him sit down and be quiet - also something not really possible at 18 months.

Later on in the afternoon, The Boy and I and The Wife went outside to play. We changed his bike around so that he could actually pedal and move around on the bike. It was mixed results, as you'd imagine. He doesn't quite get the whole pedal concept, but with some help from us, he kept his feet up. He'll get it soon enough. Stupid vincristine. The video was from the cell phone, so the quality isn't the best.



The next video is The Boy climbing the stairs and pressing the doorbell. He's very cute.

Saturday, March 14, 2009

A Nice Walk

Everyone's asleep but me.

I took The Boy for a walk to the comic book store, cleaners & Quick Chek (when The Preggo wants chocolate chip cookies, The Hubby gets her chocolate chip cookies), and he fell asleep on the last leg of the trip. That's fine. I maneuvered the stroller inside the house (trickier than it seems, as the wife's car is in the garage) and left him downstairs to sleep. The Wife took the opportunity to nap while we were out.

This morning, we went out to breakfast at the diner, as we enjoy doing on Saturday mornings. It went fairly well, with the exception that The Boy's appetite and food choices have again shifted. I wonder how much of that is normal toddler capriciousness and how much of it is chemo-related and radiation-related. Yesterday, he ate, like, two full eggs and half of an omlette. Today, he ate one egg and not much of anything else. Not much of a lunch, either. zomg - I hope he's not coming down with something.

We know that his counts are low and lowering as a result of the radiation. They were still within acceptable bounds on Friday, and we're going in for more counts on Monday. He seemed to come through the radiation pretty well, all things considered; but we won't know the real effect on his counts for another day or two. We're on track for chemo next weekend, with the possibility that the chemo will be the following week instead. Since this is a five-day, if we don't start chemo on Friday, we might start it the following Wednesday instead. We have to spend three weekdays in the hospital, so it doesn't really matter if it's Wednesday through Sunday or Friday through Tuesday. I know that next week is a heck of a lot better than this week; I could not have envisioned a chemo stay combined with a grueling show schedule. The only thing happening next week/end is the finale of Battlestar Galactica, which - while important - is not necessarily something that requires a lot of family planning time. The past two weeks, being busy every night until 11 or so, has required a lot of family planning time.

He's walking a whole lot better now. When he's not tired or grumpy, he will usually walk to wherever he wants to go. It's cute: he takes five or six steps, falls on his butt, pushes himself to standing, repeat as needed. Occasionally, he gets going for a long time without falling. The biggest issue is the "drop foot" or "duck walk," which is a direct result of the vincristine and, hopefully, reversible. What has happened is that he has significant nerve damage in his hands and feet, and he has a lot of trouble controlling and moving the toe-half of his foot. When he lifts his foot to step, his toe dips toward the ground. This means that he has to lift his knee and his leg higher so that he doesn't trip over his feet; therefore, his walking style is more complex than it needs to be and also more difficult to execute. He is, after all, walking with the figurative leg tied behind his back.

We're under physical therapist orders to tickle his feet, which I will gladly do. We need to do anything that will encourage him to flex his feet and his toes so that he develops the feeling and the control.

He has figured out how to climb into and out of our bed, which makes things a bit more difficult. He won't just rest with us unless he really feels like resting; instead, he'll wander around the room and play with the DVD player, the clothing drawers, our clock radios, etc. He still wants to relax with me and to nap with me in the afternoons, for which I am continually thankful. The snuggle time is worth its weight in gold.

We are a happy family. Even through all of this crap, I consider us to be a very happy family. My relationship with my wife is strong. The baby is happy and fat; he laughs a lot and enjoys playing with either one of us. We do lots of fun things as often as possible, like horsey rides (on Daddy, not horses) and reading books and going for walks and going to the library or the comic book store and meeting friends and the rare play date. It's certainly not a normal or conventional family right now, but we're doing fairly well. We do need to watch less television, but - considering the amount of time that The Boy needs to be relatively immobile - that's not the worst problem we could have.

Friday, March 13, 2009

One Down, Two To Go

In fifteen minutes, I'm leaving for the second night of the show. My father is coming to the show and bringing his lady friend, and my wife might bring The Boy for a little bit. It's a three hour show, so it's not exactly something that we'd expect him to sit through. I'm a little bit leery of paying ten bucks for 30 minutes of show, but... whatever. It helps the school and, indirectly, goes towards my salary.

It's really been a heck of a week. I'm not used to this kind of schedule anymore: teaching a full day, having two choruses at night, and running an extra fifteen or twenty hours of rehearsal. You can tell that I'm getting old; I used to be able to do that without taking an extra breath.

It's been difficult because of The Boy's schedule. The fact that The Wife has had to be awake at 4:30 or so has meant that the two of them have been off-kilter in their sleep schedule. This has caused a disruption in naptimes and a disruption in bedtimes. Twice this week, I've been awake with The Boy from 11PM to 1:30AM or so.

I've played pretty well, for the most part. Monday was absolutely horrible; things got better quickly. I am looking forward to sleeping in tomorrow morning and doing our "normal" Saturday morning thing, and I'm looking forward to having an easy day, pre-show. I'm even more looking forward to next week, relaxing at home at night whenever possible.

Anyway.

If I leave now, I can get a cup of coffee and a Vitamin Water before the show. Caffeine is a good thing; as a pit orchestra musician, one needs to be aware of sudden tempo changes and sudden jumps of, say, thirty or forty measures. I have 142 pages of music to play, with oodles of opportunities to embarrass myself and to never play with the high school again. With luck, I won't.

Wednesday, March 11, 2009

Who is that bald man?

Today was one of those days: school, meeting, auditions, performance. I was home for fifteen minutes to pick up some instruments and change my shoes, then I was off to the high school for the musical dress rehearsal. I did get to see The Boy for a couple of minutes. He was not particularly interested in me, as he had just woken up. Whatever. He's still cute. I got home tonight at the same time as my wife, and I helped a bit in the putting on of pajamas. Now, I'm going to pass out for six hours before starting another long, long day. This one, however, will contain a nap in the afternoon.

We'll see. I have some things to talk about, not boy-related but music-related. Not now, though. It's 11PM, and I've been on the move since 7AM.

Monday, March 9, 2009

Lifestyle

I just read my wife's blog, and there was a little conflict with another set of parents during a religious ceremony. Basically, their kid was fascinated by the costume that The Boy was wearing, and - long story short - was trying to touch him. She wouldn't let the new boy touch The Boy, for obvious reasons; you know, that whole chemotherapy - radiation therapy thing. The parents just kind of moved away from The Boy when The Wife told them that he was a cancer patient. They couldn't, apparently, get over the fact that she was so strict about not letting the boys touch each other.

It just got me thinking about the lifestyle change that we've undergone. We strongly resisted changing very much when The Boy was first diagnosed. We played things very cavalierly, and we paid the price for it: The Boy was frequently sick in the fall, culminating in that horrendous 10-day hospital stay over Thanksgiving that put me in the emergency room. Now, we are fully involved in The Cancer Lifestyle.

The house is sterilized regularly. The toys get cleaned once a week (or so) with a germicide. All dishes and cups are run on the "steri-dry" setting of the dishwasher; many clothes are washed on hot instead of warm. We don't wear shoes in the house, we use Purell often enough to dry the crap out of our hands. Juice and water are prepared differently - no reusing cups, no drinking anything that's been left out, leftovers are gotten rid of quicker. More soap is used all over the house. When we go out, everything that The Boy touches gets cleaned, first - we bring our own wipes for the tables and chairs with which he'll be in contact.

People don't touch him. I don't shake hands with people if I can avoid it. I don't let poeple touch me, even if it offends them. Whatever - I'll live. If they want to shake hands, I'll hold my hands up and tell them that I've been sick and coughing into my hands, and that's usually enough for them.

Life is different, for sure. We're a LOT more careful about everything. It's paying off - I know that everyone in the house has been a whole lot healthier this season than usual. It's a lot harder, also.

All right. I'm exhausted and need to sleep. I just got my butt kicked by the bass clarinet part of the musical, and it's going to take me some time to get over that.

I'm a bad, bad person.

I'm a bad person because I slept an extra hour this morning. Normally, I wake up at 6:10, lounge in bed for ten minutes a snuggle with whomever is around, then leave for school around 7 o'clock. This way, I can practice for a half hour or so before the start of the school day. Today? Nope. Woke up at 7, ate a quick breakfast and was at school at 7:50.

Granted, I did help out (about 3% of the work to prepare The Boy) with getting The Boy ready for treatment. Being more specific, I took his pajamas and diaper off and helped my wife put the disposable diaper on him. That was pretty much it. We do have this down to a science, though: she wakes, showers & stuff, which I watch The Boy, then she loads the car, we get him dressed, and they leave. Then I go back to sleep.

Last night was a struggle. It was one of those nights where he was NOT going to sleep in his bed. We tried, we really did: even together, reading him a book or two and giving him lots of snuggles, he still screamed and fussed and bolted for the door at every opportunity. Considering that he's in the middle of radiation and not feeling well, and considering that he had a major meltdown earlier in the evening due to a combination of radiation feeling-crappy, bleeding diaper rash, and teething, we decided that discretion was the better part of valor.

Why fight him? Why force him to stay in his room, crying and screaming and frantic? It's kind of cruel. The Boy has to deal with enough crap in his life. Who are we to force more upon him? We were both exhausted, so we went to bed at 9:00 with The Boy. Well, 9:30 - I played a half hour of Rock Band.

Today he had radiation and a pediatrician 18-month checkup. (Ha!) 33 inches long, 24 pounds. We knew that already, considering he gets weighed and measured twice per week or so. I'm hoping The Boy will nap with me this afternoon - I >really< need to sleep a bit before the rehearsal tonight.

Sunday, March 8, 2009

A fun, if busy, weekend.

This is the first weekend of Show Month. I played soprano sax, clarinet, and bass clarinet in my school's production this weekend, and I'll be playing clarinet, bass clarinet, and baritone saxophone in the high school production next weekend. This means late night rehearsals, extra afternoons out of the house, and way less sleep than usual.

The show this week was really, really reasonable - an hour and a half from beginning to end. Not a lot of padding and fluff: When one song ends, the next song begins. Lots of playing and no breaks means a quick show. I'm glad about that, because The Boy started radiation on Thursday. I appreciate the extra time. Next week, we won't be so lucky: no snow day taking one day of rehearsal and an hour longer per service. Monday night rehearsal, Tuesday night Dapper Dans (and return the soprano sax to the buddy who lent it to me), Wednesday night dress rehearsal, Thursday through Saturday performances.

The Boy seems to be responding to radiation reasonably well. The first night, he fell asleep in my arms at around 7:15PM. He slept through until The Wife woke him at 5:15 to head out for the next treatment. This early-to-bed, combined with the arrival of my wife's sisters (SsIL - Sisters In Law), meant that he was NOT willing to go to bed Friday night. He stayed up to watch Battlestar Galactica with me then fell asleep around 11:15PM. Saturday, he napped his normal amount but still was awake at 9:30 when I got home from the performance. The Wife & SsIL couldn't get him down, and they theorized that he was waiting up for me. I had a little more success: thanks to the new iPod Touch's internal speaker, I put him in bed and we watched some "Goodnight Moon" video. He was asleep in ten minutes.

Today was a good day. I was out from 8:15 until 4, going directly from church to the matinee performance. When I got home, The Boy was just awake from his nap. We played outside for a while, scribbling all over the driveway and front steps with road chalk. It was very cool: when The Boy came inside, he was covered in chalk dust, sand (from where I sanded the steps during the snow last week), dirt from the lawn, and dust from touching my car when he tried to draw on it with the sidewalk chalk.

Again, I emphasize: it is REALLY, REALLY AWESOME to have normal things happen with The Boy. I love the fact that he was dirty when he came inside. Little boys are SUPPOSED to get dirty on the weekends! It's in the breed. I'm glad that his counts were good enough to allow him to play outside and touch stuff, although I cringe when he crawls on concrete and asphalt. That can't be comfortable on the knees.

The only medical complications that we've noticed so far is a LOT of pooping. Like, he had five large-sized poops today. We're not concerned because he is eating and drinking normally, such as eating his body weight in pancakes at the pancake breakfast Saturday morning. He was bleeding a bit from the skin around his rear - basically, diaper rash gone bad. He had naked time and a bath to help it. He's also teething, which doesn't help. I'm not sure if that's related to the chemo (the poop, not the teething), but I'm not sure that it's NOT related.

I'm not sure if the sleep disruption is related to the radiation treatment. I suspect it is. We'll see.

The radiation will last all the rest of this week, making it seven treatments in total. They've been very understanding of his needs, and The Boy has the 7AM treatment time all week. That's good, because he has to be NPO for the treatment because he needs to be sedated. It is impossible to explain to an 18-month-old why he can't eat, so we're trying to avoid the topic entirely.

(That was the issue on Thursday. He had 2PM radiation so needed to be NPO after 8AM. They walked at the mall then spent some time at my school banging on the drums. It wasn't fun for us, but we made it without a serious meltdown.)

The only down part? They have to leave for the hospital around 5AM. The good part about that, in my selfish ways: when I'm awake in the morning, I don't have to worry about being quiet or subtle for fear of waking people.

Thursday, March 5, 2009

"X" Marks the Spot

Quick post right now; more during lunch, I hope.

The Boy had a successful day yesterday. Check out my wife's blog for exact details. Suffice it to say that it scared the crap out of me to get a telephone call of: "Musical Daddy, call the occupational therapist to cancel - The Boy hasn't woken up from sedation yet." Oh, great. I'm sorry, you've interrupted the Emperor's groove.

Last night, I watched him while my wife went to orchestra, as usual. It went amazingly for the first 90 minutes - LOTS and LOTS of fun! Laughs, giggles, wrestles, snuggles, horsey rides, books, trains, talking, walking, everything. It was awesome. The next hour and a half? Not so much fun. He was having none of the whole "bedtime" thing, despite the fact that I, personally, was exhausted. Sigh.

Trying to shave & shower while an 18month old is screaming is not fun. Fortunately, he likes playing with my wife's hair ties and the little disposable bottles of baby soap. We eventually settled down in bed, and I read while he snuggled. It wasn't fun.

This will be an interesting week. I have show rehearsals and performances every day between now and next Sunday (ten days from now). The Wife's sisters will be in town to help out - I'm a little nervous about that, because the sisters can hit the house like a hurricane. I'm not in the mood to clean up the trailer park, you know? Still, since I'm away for so long, it'll be nice to have someone around to spend time with The Wife.

All right. Gotta go. Jazz Band rehearsal in an hour, and I need to warm up. My lead alto player has region band rehearsal. I think I remember how to play saxophone well enough to sit in with the band.

Tuesday, March 3, 2009

Should I be worried?

The Boy has asked, just now, to drink some of my Diet Mountain Dew. Should I be concerned? I mean, it's pretty horrendous stuff.

At least it's not carbonated. That might mess with his belly.

Bye-bye! (Cuteness)



The Boy says "Daddy," "Down," and "BAAA-EEEE!!!" Very cute. Stick around through the 30 second mark for a cute surprise.

Sigh.

It was nice having the snow day yesterday. I finished my literature review - well, mostly finished it. I did skimp a bit on the details. My mentor made a great point - it's more important that I get it done now than get it done perfectly. I don't have time to screw around. So, it's time to play the letter of the law rather than the intent.

Anyway.

We're having some bedtime issues. When Grandma is here, it's a big party for The Boy. (As it should be. It's Grandma / Grandpa's job to spoil babies.) He's used to napping and sleeping on Grandma. Last night, he freaked when he found out Grandma went home, and he threw the FIT of all FITS when we tried to put him to bed.

Hopefully he'll get over that.

Tomorrow: ZZZZzzzAP!

Monday, March 2, 2009

While Rick Jones plays the harmonica...

Thanks to the snow day, I was able to be at the meeting with Dr. Wegman, our radiation oncologist. As a side note, I think it's interesting that fate seems to be allowing me to be present at all the things at which I need be present. G-d really does look out for us, even if we don't understand or don't appreciate His Plan. (The Cylons have a plan, too, that only seems marginally more destructive. Sigh.)

Anyway.

We arrived at the radiation center at around 8:50 for a 9:00 appointment. We had received the paperwork in the mail earlier, so we did not have to fill it out while at the office. We went in and met the nurse and the doctor, who spoke with us for around 45 minutes.

Basically, it's a six-day radiation cycle, after which chemo will resume as soon as his counts are ready. The radiation is a low dose but a high area of affect, and the radiation will take place on both sides of his body. There will be a minimum of the "sunburn" effect that higher doses, such as those Grandma and Grandpa received for their cancers. The short-term effects include nausea, fatigue and depressed counts. The long-term effects include potential bone growth issues and a slightly higher risk for cancer in his midsection.

Hey, combine that with the cytoxin's increased risk of leukemia, and we're looking at an awful lot of fun in high school.

The interesting thing is how quickly things are going to start: on Wednesday (two days from now), they'll fit him for a butt mold and tattoo him on the areas that he is getting zapped. The tattoos are small, freckle-shaped things that allow the radiation therapists to line up their shot, and the butt mold keeps him in place. The Boy will be sedated for the procedure in order that he lie still, and he must be NPO for six hours prior to treatment.

(NPO definition - no food for six hours beforehand, clear liquids up until two hours before.)

He will receive, at the time he is tattooed and molded, a deep CT scan to verify the area affected. The whole thing will take forty minutes or so. Pretty quick, no?

The treatments themselves will start on Thursday. They will run Thursday-Friday-Monday-Tuesday-Wednesday-Thursday, and counts will be taken before, during, and after the treatment. The effects of radiation on his blood counts will be cumulative, meaning the counts will shrink as the treatment progresses. Considering he is already pre-treated with chemo, it seems likely that The Boy will receive another transfusion within the next week and a half.

We are hoping that the Tumor Review Board will discuss The Boy's case on Wednesday, as the radiation oncologist needs their input on his exact method of treatment - radiation dose, areas of affect, etc. We'll see.

Well, that's that. I feel better that I was there, even though I'm still freaked out about the whole radiation thing. I don't know why, considering the radiation seems to be more mild than his chemotherapy. Just my own psychosis, I guess.

Now to enjoy the rest of the snow day. There's some playing that needs to be done, and I need to finish my literature review for my class. I want to play some Rock Band with my wife, and we might go for pedicures; then again, I might be effeminate enough without adding that to my arsenal. (I'm far more vain than my wife, always on diets, more concerned about clothes and dressing, a more enthusiastic shopper, et al.)

Sunday, March 1, 2009

Wound up...

Yesterday was fun, for the most part. Grandma was pleasantly surprised to have a healthy, happy The Boy to spend time with this weekend. Instead of juggling him around the hospital room, she gets to play with him at home. It's easier and a lot more fun, you know?

The Wife and I went out to breakfast, to a breakfast diner that has not been good lately. They were a good business much longer than a bad one, so it was nice that they treated us well (...and asked about the baby, which was even better). We got home and played. Grandma and The Wife took The Boy shopping after he & I took a nap, and that let me put in a solid three hours' work on my paper.

(Most of which was wasted, but that's beside the point.)

Uncle B came by around 3:30PM, and Grandma and the two of us watched The Boy while The Wife went into New York to see a show. Grandma was, as usual, wonderful. It was a nice mix of time with the baby and time without - without him when we played a video game that was not appropriate, with him when we did inoffensive games and/or watched a video clip or read comic books.

Please note: we have not actually changed our recreational activities since we started hanging out in middle school. Comics and video games. We just have more money to spend right now.

Trying to get The Boy in bed was an adventure. He wouldn't. Grandma and I juggled him back and forth until we finally "locked" him in the room with Grandma until I was done shaving / showering / cleaning the humidifier. At that point, he was asleep... for an hour, until I took him in bed with me. The poor thing was so wound up and overstimulated. Like father, like son.

Anyway. NBC morning news just said a possible 8-12 inches of snow tonight. Don't like that at all, because we have The Boy's appointment first thing Monday morning and those things are difficult to reschedule.