Wednesday, December 31, 2008

5 for 5 this morning...

1) The new 1TB hard drive is SATA, which I don't have in my machine.
2) The new DVD-RW drive isn't compatible with my motherboard.
3) The new 4GB of memory doesn't fit in my motherboard.
4) The new processor fits, but I can't get the heatsink off the motherboard without breaking it, so it might as well NOT fit.
5) The machine now won't turn on.

That's $250 worth of parts that are useless. For a little more, I could have gotten an entirely new machine.

I shouldn't have gotten out of bed this morning.

Tuesday, December 30, 2008

Call me "Pukey McPukesalot"

Cute morning, as The Boy was in a wonderful mood, waving hi and bye-bye to everybody in the house. All smiles, all hugs, lots of babbling and chatting with nobody in particular. They left around 8:30 to head to the Valerie Fund Center, leaving me here to wait for the Nupagen.

Nupagen, you'll remember, is the drug (administered by injection) that jumpstarts the bone marrow. It's something that The Boy will be on for the duration of his treatment so that he has a fighting chance of actually replacing the red and white cells that he's losing. The nupagen is delivered via courier to our house, which means that someone must be home to take it - they can't leave it at the door because of medical reasons. Without insurance, it's crazy - it's like a thousand bucks per dose or something crazy like that. That means that they'd be leaving something like $25K worth of medicine on the front doorstep... I think not.

So, they left me at home to wait for the nupagen, which is supposed to be delivered at some point between 8 and 11 this morning. Hopefully, as it is now 10:22 and no sign of nupagen. I'm supposed to leave here around noon to meet B at Jimmy Buff's in Florham Park for lunch. After that, I'm attending a youth chorus rehearsal, napping a bit (I hope), then heading to Dapper Dans, which will hopefully be better attended than last week.

Whatever. So far this morning, I've washed the kitchen counters and floor, the dining room floor and the humidifier, as well as straightened up some and finished the thankyou notes. When I'm done with this, I'm going to get back into grading some playing tests.

The Boy puked in the car on the way to the Valerie Fund Center and again once he arrived. They're ordering nupagen there, so it's a little less important that I run a nupagen dose up to the hospital (assuming it actually arrives). Considering the state of his blood counts (low, lower and lowest), it's not entirely surprising that his system is working in funny ways. We'll see what happens.

EDIT: The nupagen was delivered at 10:53. Nothing like waiting for the last minute. And, in solidarity of security, he rang the doorbell, left it on the ground and walked away. Granted, the front door was open, but still.

Monday, December 29, 2008

Two New Things

1) Most exciting, ever: The Boy was giving me nice tackle-hugs, and every time he did, I said, "I love you!" He actually said "Ah rur yooooo," which can be loosely translated as "I love you!"

Hey - it's tenuous. I'll take it, though.

2) If I had to be a Disney villain, it'd be Gaston. He's funny and very entertaining. The other are weird. Most scary Disney villain ever? The deacon from "The Hunchback of Notre Dame." The way he cut down the Hunchback's mother at the beginning was frightening. He only got scarier as the depths of his insanity were plumbed - characters like him, who believe that they were inspired by G-d to do the evil acts because the evil acts are done with good, G-d-fearing intentions, are horrendously frightening.

But, I would choose to be Gaston. "Now that I'm grown, I eat 5 dozen eggs... so I'm roughly the size of a BARGE!!!!"

Conan! What is best in life?

Decent accomplishments today: spent four hours arranging, organizing, collating and copying parts for my three bands. Spent 90 minutes grading playing tests (although I think I might be confusing some tests with other tests - not sure if I'm regrading a cassette side that I've already done. Sigh). Spent a few hours watching Rutgers narrowly and interestingly defeat NC State in the "papajohns.com" bowl. Spent a little bit of time straightening up.

Left to do tonight: jog and lift some weights - not much, just two or three exercises. Put the recycling and the garbage out (BIG task, considering the XMas / Channukah recycling). Take the computer desk & monitor and put it on Freecycle, then put the crib out there. If I can, I'll vaccuum and wash the kitchen & dining room floors. Then, maybe, I'll watch an episode of House and sit down and read a book. Maybe.

All is contingent upon The Boy, as per usual. He went in for counts today, and they determined that he needs blood. His levels are VERY low. But, because of the timing, they took blood to type & cross and sent us home. He'll go back in the morning for his blood. The problem? He's bleeding from the access point. Not a lot - but enough to be concerning, particularly since it's going to be more than 12 hours until he's in front of the doctor.

What does that mean? Likely, a trip to the hospital tonight. We'll see. That will, of course, put the kibosh on everything except the garbage and recycling.

(The title? From the immortal "Conan the Barbarian". The general says: "Conan! What is best in life?" He responds: "To crush your enemies, see them driven before you, and to hear the lamentations of their women.")

Sunday, December 28, 2008

Grump.

I've been snapping at everybody today, for no particularly good reason. Why? I don't know. I'm bored, but I don't feel like doing anything. I'm tired, but I don't feel like going to sleep. I'm hungry, but I don't feel like eating anything.

The biggest mistake I made today was taking a nap. Not that I had a choice, understand; The Boy is the most amazing tranquilizer that exists. He lays his head on your shoulder, and you're guaranteed to be asleep inside of ten minutes. It's really quite amazing. Plus, he's very "adult" in his sleep habits; he knows what he likes and doesn't like. Likes: snuggling up on your shoulder or splayed across your midsection. Doesn't like: an arm draped across his midsection or a hand resting on his thigh. Likes: using his hand to touch your hand, arm, shoulder, face, etc. Doesn't like: when you touch him, stroke his head or arm. He does like having his back rubbed, I think. He's cute, though: he takes your head off of his body without waking up, readjusts his posture on your shoulder, and falls back asleep.

What do I have to do:
1) pay the bills & file a month's worth of bills and books (approx. 1.5 hours)
2) upgrade my computer with the processor, ram, new DVD-RW drive and 1TB hard drive that's been sitting in my computer room since the Black Friday sales (approx. ??? hours - maybe 3?)
2.5) Move the crib from its current home in the music studio to its temporary home in the comic book room, and find a new home for the computer desk and computer monitor which are in there, because they will never be used again. (approx. 30 minutes, if I'm screwing around)
3) thoroughly clean and vaccuum the downstairs, which hasn't been done since the summer (yuck) (approx. 45 minutes - I work quickly)
4) sweep, vaccuum and wash thoroughly the floor in the kitchen and dining room. (Side note: is the wet swifter good enough for our sanitary purposes, or should we invest in a mop and a tougher cleanser?) (approx. 20 minutes)
5) organize and bag six months' worth of comics (approx 1.5 hours, plus or minus reading time of issues / runs that I really like)
6) grade two hours' worth of playing tests and prepare 6 total band pieces (2 per grade) for use on the first day of school. This includes my new grading system for the playing quizzes, which is an individual sheet for each student that they keep for the school year. (Approx. 4 hours, but could be 5 if the copy machines are still balky and unreliable)
7) Write thank-yous for a new charity that contacted us and gave us some money, for some late Christmas gifts and for some AWESOME fudge that my niece baked for us (J the younger - you SERIOUSLY rock my world) And, I need to get a thank-you to Aunt P in Paris. (approx. 15 minutes)
8) Reprogram my Garmin with the Yoda voice.

All in all, it's just one day's worth of work. But, I'm lazy, sloppy and worthless right now. My body and brain have just shut down, and I need to wake up and get moving again. Argh. And, I need to NOT irritate my wife and mother-in-law until they kick me in the hoobeejoobees.

Again.

Saturday, December 27, 2008

Cuteness

The Boy has gotten very good at blowing kisses. He does it when he's in a very good and smiley mood, at the immediate family. He's also gotten very hug-centric: he enjoys throwing his arms around people's shoulders, and he actively seeks hugs as he's playing around.

Today, he was kneeling on The Wife's lap, and he would giggle, growl and throw himself at her - a full-body hug. Then he'd push himself back up, giggle, and do it again. Regularly, when I crawl across the floor at him (growling, of course), he giggles, crawls towards me, pulls himself to standing using my shoulder and hugs me. Very cute.

He now points the remote control at the television when he pushes the buttons. The only button he pushes regularly that causes an effect is the "pause" button on the TiVo - it's a big yellow button in the middle of the remote. He also is very good at pressing the button on the telephone (landline) that tests the volume level of the ringer.

More and more, he's pushing away from things and standing on his own. He even, occasionally, takes a diving step or two to reach for stuff - not walking, more controlled falling.

When he's in the hospital and the television goes off, he points to the t.v. and grunts at it. It's very cute.

He's starting saying "Daddy," but still says, "Mom!"

He's very good with a spoon, with either hand. We give him yogurt and oatmeal for breakfast, and he uses a spoon in each hand to eat. Although, today, he got the idea to dump the yogurt into the oatmeal to make it taste... I hesitate to say better, but different. He's also quite good as asking for "jooosh", which means juice.

And, he's very good at opening presents. He's even seeking out the areas that aren't taped by turning the package to different sides!

The Valerie Fund charities were very generous to us this holiday season. More on that later.

A Night Out?

My wife and I have been trying to get out of the house for an evening, but events have been conspiring against us. First, it's darn exhausting to spend a week at the hospital. My wife and I are very goal-directed, so we spend a week handling everything we need to handle and deal with the consequences later - lack of sleep, lack of cleaning / straightening up at home, lack of organization, lack of dotting the i's and crossing the t's at work, just skipping all of the little details involved in life until The Boy is home from the hospital. Afterwards, it takes about four or five days to get caught up with rest, cleaning, working and living.

Not just that, but taking care of The Boy is a wonderful, time-consuming thing. Aside from the whole cancer thing, he's a normal boy - loves to crawl around, play with toys, play with people and work for hugs from anyone nearby. That takes time and energy - but, that's a normal expenditure of energy, same as everyone else.

The whole pregnancy thing also takes quite a bit of energy from my wife as well - like tonight, needing to rest before we're going to run to somewhere like Applebee's for dinner. Again, not an unusual expenditure of energy.

But, combine those three things...

I dunno. I'm tired, too, but all I really did today was fold three or four pieces of laundry and play "Assassin's Creed." Not a great use of time, but at least I'm that much closer to finishing the game! (Only the third part of Jerusalem to explore, then fight the big bad boss. Maybe an hour and a half left until I'm done with the game.)

I know that I don't have much room to bitch right now. My mother-in-law has been keeping The Boy with her, like, 20 hours a day.

All I gots to say is dis: DisneyWorld in a mere 24 months.

A Refreshing Dose of Normalcy...

Last night, my brother, his wife & one of their daughters came by to visit (the other had left that morning to go to Atlanta, to visit with her father). It was a really nice visit: my wife cooked dinner, they brought copious presents for The Boy, and we had a nice night with each other.

The best thing about the night was that, for a little while, my family felt NORMAL. We didn't feel like we were a cancer family, trapped inside the house because of an immune-compromised toddler. We were just a normal family, spending time with the extended family.

One of the interesting things (that I've discussed before on this forum) is that people really and truly hesitate to call or to visit, fearing that they would be a "bother." To our friends: you are not a bother when you call. You are not a bother when you drop by to visit. To the contrary, we love visitors and we love callers A LOT!!!1!!1! Anything that takes us out of our chemotherapy-induced haze of existence is, by definition, a good thing.

We're not saying that we want overnight guests - unless, of course, you're willing to stick around and help out with stuff like overnight stays in the hospital and stuff like that. But, we love visitors. Even if you can only come by for fifteen minutes, please feel free to stop by and to say "Hi!" It'll make a positive difference for us.

The caveat with that is, of course, if you're sick - have been sick recently - have someone at home who is sick - then please do NOT come by. Call instead. Exposure to sick people means a two to four day hospital stay, which is no fun at all. On a related note, I am 50% through the process of installing one of those wall-mounted Purell dispensers - one of the ones that's automatic, hold your hands underneath and it spits into your hands. I'm excited about this. It's fun.

To the tune of "I Have a Litle Dreidel": "I have a little poopy, it's big and made of food; and when it's good and ready, then you will know I poo'd."

Heh.

Friday, December 26, 2008

iPod Follies

I'm kind of OCD when it comes to my iPod and the things played on my iPod. As in, I'm really picky about making sure that things are played to their completion, so that the "Play Count" number and time get recorded. If you stop it with even one second left, the Play Count doesn't tick over, you see. So, I love to see how many times I play stuff.

In my music, the highest playcounts - over 60, each - come from the Ron Meixall vocal warm-up CD that the Big Apple Chorus used to use. I alternated between that one and one by Roland Wyatt, and my top 15 spots are held by that. After that? "Goodnight Moon," the video that was put on my iPod just before The Boy's last hospital stay, with 44 plays - tied with the learning track for "Hey Good Lookin'" and Vocal Spectrum's "Cruella De Ville."

The highest non-barbershop, non-learning, non-warm-up tracks are Max Q's album, "For the Children," which is in the high 20's. The highest pop music play counts are the Weird Al Yankovic "White and Nerdy" video (20) and Metallica's "Enter Sandman" (19). Just in case you're interested.

Thursday, December 25, 2008

A fairly good use of time

So, to complete my whole day yesterday, I got a text message on my way into the second mass saying that The Boy needed a transfusion and would likely not be released that night. Perfect. Just made the day that much better.

During mass, I looked down the aisle and saw a really, really good-looking brunette standing near the back of the congregation... turned out that The Wife decided to come listen to the choir at mass. She had pretty decent timing; although she missed the "Masters in the Hall" piece we did as a prelude. At the end of the service, she & I went to the hospital, where The Boy had finished getting his blood (hemoglobin levels of 5.9, which is REALLY low). After a couple of hours, we actually got the go-ahead to come home! We arrived home at 11:45PM, and it took about an hour and a half to get him settled.

Prior to mass, I did have a very, very nice dinner with my brother and his family. It was really nice to spend time with them, considering that I was so bummed out that I wasn't going to spend Christmas with my family! I can't believe that my niece is 18 years old yesterday... just amaing.

Today, on Christmas, we did absolutely nothing. I mean really, authentically absolutely nothing. The Wife made pancakes for breakfast, which was awesome. She makes amazing pancakes. Afterwards, I went back to bed. When I got up, The Boy and Grandma & my wife fell asleep. I used that time productively: I finally finished the game, "Lair," on my Playstation.

I've had that game since October 2007 but hadn't played it since, like, February. It's a cool game: you play a dragon rider, and you move the control and tilt the controller to move the dragon around and breathe fire and stuff. It's got 15 missions, and I had finished 11 of them by February. I finished the last 4 today. I'm going to finish the last third of "Assassin's Creed" next, then I have "Rock Band 2", "The Simpsons Game", "Devil May Cry 4", "Lego Indiana Jones" and "Heavenly Sword" to play. Heavenly Sword will likely be after "Assassin's Creed" due to its short playing time.

(Assassin's Creed isn't what you think. It's really quite cool. You play an assassin, yes, but you kill bad guys and not good guys. You can't win the game if you just kill normal people or good people. Plus, they actually used maps of 11th century Jerusalem, Damascus and Acre, to make the game.)

So, we had dinner from some of Uncle Tom's frozen kosher meals, and then webchatted with my brother in California. We've been watching "Shark Tale," which was given to The Boy from the charity. The Boy isn't so into the movie, although he does like the music. I'm not so into the movie either - I voted for Iron Man but were outvoted.

Tomorrow is Cleaning, Straightening and Organizing Day. Fun!

Wednesday, December 24, 2008

Depressing Christmas

So, here I am, sitting in my own house on Christmas Eve. It sure doesn't feel like Christmas, and I'm really kind of bummed out about it. Strike that - I'm pretty frakking depressed. Christmas is my favorite holiday of the year, and my home has all the Christmas charm of... well, I don't know what. The Grinch's lair, I suppose.

I love Christmas. I love decorating my house with lights and my stupid blow-up and light-up snowpeople. This year? No lights on the trees - haven't had time. Only one snowperson on my lawn, because the other two kept getting blown up the street by the crazy wind and weak little pins that were "holding" it down. I love putting up my Christmas tree and decorating it, and putting other fun decorations around the house - lights on the bannister, stockings (two Yankees stockings, an ESPN stocking and a BIG stocking for my presents) hung up and holiday-appropriate statues on the television, table & dispensing soap in the bathroom. This year? There's a Santa cap forlornly draped on the banister, and my in-laws took down one of the four stockings because the baby gate wouldn't open all the way.

My father's in California, and my brother's family is way too busy dealing with their church duties and a difficult mother-in-law to be able to spend much time with us. My friends are all with their families, in different parts of New Jersey, and don't have much time for us either. A few phone calls, which are nice, but that's about it.

Granted, my son will be coming out of the hospital soon. That's a great Christmas present, all things considered. But, you know what? This Christmas sucks eggs. Big time.

Blech. My favorite holiday of the year, flushed down the toilet. I'm really unhappy about this. I'll get over it - in the long run, the only one hurt by this is me. I can deal with it. My wife doesn't really "get" Christmas, and her family would strongly prefer that I not soil her household with a Christmas tree. So, there you have it.

I know, I know. My son's got cancer, and I'm upset that I don't have a plastic Christmas tree in my living room. Boo hoo. I'm allowed to be self-pitying every once in a while.

Gotta go. Time to shave & shower. I've got two masses to sing tonight.

It sure doesn't feel like Christmas, though. I tell you what.

Tuesday, December 23, 2008

Hooray!

The Boy will be coming home at 2PM tomorrow afternoon, more or less. That makes us happy.

And, the Yankees signed Mark Teixera to an 8-year contract. That makes me happy.

Funny kid stuff...

So, I will again discuss the fact that I have been very, very lucky in my teaching career, having many students who are good, kind and generous people. Yesterday, a gaggle of my 8th grade students gifted me with some books for The Boy, of which I am extremely appreciative. (Wasn't I just complaining to my wife that we didn't have enough books to read together at the hospital?)

So, I brought the gifts up to his hospital room yesterday with the intention that The Boy open up a couple for us to read. When I arrived, and The Boy started playing, he was playing with a toy piggy bank that Aunt C had given him. This piggy bank has ten large plastic coins that, when you put them into the slot, music plays and counting stuff happens. You can easily pull a door open in the side of the pig and access the coins. He loves to put the coins in the slot to make the music play, then open the side of the pig and take them out again. He played with that on his playmat.

I handed him the first present, and he gleefully and slowly ripped the paper off of the present and tore the paper into little shreds. He took the book, picked it up, dropped it at his side and resumed playing with the bank. I handed him the second present, he cried, ripped the paper off, threw the book to the side and resumed playing with his bank.

Kids, right? All he really needs is a wrapped cardboard box to play with, and he's content at holiday time.

Monday, December 22, 2008

Interesting.

When I got to the hospital this afternoon, Cousin J was there with The Wife and her parents. They didn't go home to rest like I expected, but they did get out of the room for a few hours to spend some time together. I'm happy about that.

Anyway.

Cousin J is turning 18 in a couple of days, so we spent some time discussing that, rehashing old memories and talking about college and high school and stuff like that. It's always great to see her. The Boy played very nicely with her until she left a little before dinnertime.

The Wife had her ob/gyn appointment, and all is going as planned. All tests came back as expected, which we're happy about for obvious reasons. I've been asked whether I want a boy or a girl, and I have now amended my statement: 10 fingers, 10 toes, all the brain cells and NO TUMORS. That's what I want. The sex is irrelevant.

He flipped out around 5:15, when he just ran out of patience with the chemo and the blood pressure cuff and that sort of thing. Considering that he had some problems with his port a little later - nothing serious, just a loose needle that needed to be replaced - it wouldn't surprise me if some of the medicine escaped the normal path and burnt him a bit. I calmed him down nicely, I think, and we continued to play and to hang out.

Dinner was Chinese food from the kosher Chinese food place in West Orange. I'm not a big fan - the taste, frankly, is bland, particularly considering the amount of calories contained in the food. Whatever. I had an egg roll and continued to do schoolwork while The Wife and Grandma entertained the baby.

When I left, he waved enthusiastic bye-bye and blew a kiss at me, which was WAY cute. He didn't cry at all, but he had plenty of hugs and smiles and giggles for me. It's nice that he's growing intentionally affectionate: he has no problems calling people over to him for the express purpose of giving and receiving hugs, and he has no problems crawling to someone for hugs.

I just finished jogging and writing out some parts for school tomorrow. I plan to arrive at school at around 7 and run some photocopies before jazz band. At that point, we'll load the busses and put on three shows at the three elementary schools that feed into our school. After school, I'll go home and nap and do some light housework, then head up to Dapper Dans rehearsal. After rehearsal, I'll spend the night at the hospital.

He should be released on Wednesday afternoon, pending anything unexpected. We'll see.

To heck with everything. I'm exhausted. Update the iPod, take out the garbage, shower, medicines, brush teeth, read a chapter of "The Bourne Identity" and go to sleep.

Quiet house, quieter morning

The morning goes very differently when The Boy isn't there. It's difficult, almost, to juggle the timing of things without passing The Boy back and forth between the two of us - hand him off to The Wife to get his oatmeal & cottage cheese (or whatever), handed back to me to get him changed & dressed, etc. Having to get up, get dressed, eat breakfast and leave is disappointing by myself. On the other hand, I got to school early enough to take care of a bunch of niggling little tasks that have been hounding me for a couple of weeks.

Still, I'd rather have to "worry" about cleaning his breakfast tray and getting him dressed in enough time to steal some snuggle time before we leave.

Today will be interesting. The Wife will relieve Grandma at the hospital at 3-ish. I have some appointments with students after school to play some audition music for me, which will last until 3:30; then I run over to the hospital to arrive by 4:15. The Wife has a 4:30 ob/gyn appointment across the street for which she needs to leave at 4:15. We'll be at the hospital together, then, until Grandma has a chance to go home, shower, rest and relax as fully as possible.

Thinking about the timing, we're going to get The Boy home on Wednesday, assuming all continues to go as smoothly as it has gone thus far. After a 9AM admittance on Friday, they didn't start his chemo until after 5 o'clock! They have been slowly pulling the time back - yesterday started at 4:15, for instance - but they aren't going to get him pulled back enough to get released on Tuesday night. My guesstimate is they want to keep him a minimum of 12 hours post-chemo for observation, which means an early Wednesday release.

I'm okay with that, all things considered. I'm working much of the afternoon and evening on Wednesday - church gig, with some big holiday coming up this week or something like that. Thursday, I'm off.

I think that Thursday, we're going to take OFF off. Like, not leaving the house at all. Stay home, play, watch television (Yule Log! w00t!), play, nap and rest. I haven't had a day like that in - well, I don't remember the last time. It's been a while.

On the other hand, all it takes is another evening like yesterday for us to have a St. Barnabas Christmas. Whatever. The trick is to limit stimulation to him when he's THAT tired. It's not brain surgery, for crying out loud.

Sunday, December 21, 2008

Hannukah Celebration

I admit to being more than a tad grumpy tonight. Part of that was caused by an amazing lack of sleep (how many nights of more than 6 hours sleep have I had lately?), part of that was caused by the normal crushing stress of having my kid going through chemotherapy, and part of it was concern. When I got back to the hospital at 3:30PM, The Boy was just lying down for a nap. He didn't sleep, partially because every time that he was settling to sleep, somebody walked in the room and agitated him in some way, shape or form.

Don't get me wrong; I'm not angry that people came to visit. It was a really nice evening: The Wife's sisters, their sort-of-sister, Grandma & Grandpa & sister-in-law's friend J were in the hospital. It's just that, when he hasn't had a nap and has had three days of nasty chemotherapy, the baby is going to be on a really, really short fuse.

I put a stop to the "everyone pile in the hospital room to say hi" thing pretty quickly. As my father recommended, it's a bad idea to have more than one guest besides Mommy & Daddy. He is as agitatable as I am, and he gets overstimulated relatively quickly. I was also the one that pulled him back in the room when he started to get a little fussy, and I was the one who told the group that they were NOT to stop in and say good night to him.

But, considering that I was the one that kept settling him down when he was disturbed from his nap, and disturbed from being overstimulated, and disturbed in general, I realize that I have to be the bad guy occasionally. I don't want to offend anyone, but I also don't want to have a baby that is that upset and angry.

Kids have limits, you know? And kids who are on chemotherapy tend to smack into their limits much harder and faster than non-chemo kids. Fifteen minutes with the family in the Hannukah celebration was enough to send him to a bad place, particularly considering he didn't have his nap in the afternoon.

He did get a lot of nice presents. I got a GPS device, which is awesome because I love gadgets.

I hope and pray that tonight is easier than this afternoon was. I don't want my mother-in-law to have a difficult night. I've been there: every two hours for the diaper change, it can take 30 to 45 minutes to soothe him back to sleep. Then, it takes fifteen minutes to soothe myself back to sleep, then the whole thing starts up an hour later. Long story short, a night of loud crying and three hours' sleep can result quicker than you can say, "Cranky Little Man."

I'm excited about my GPS. I want to go get lost somewhere so that I can find my way home again.

Saturday, December 20, 2008

I'll never see cotton balls the same way again...

Entertainingly enough, The Boy has figured out what we are doing with the cotton balls on the changing table. You see, the nurses need to carefully monitor his urine, because the chemo drugs can damage his kidney. Yes, we're ignoring the fact that drugs designed to treat kidney cancer can seriously damage the kidneys. Anyway, we pack two or three cotton balls around his thingie to catch urine for the testing. Today, he fished around in the bag while I was changing him. He pulled out a couple of cotton balls, looked at them, and placed them on his thingie.

Very cute and very funny.

And, depressing that he has learned that.

Goodnight, Moon

Grandpa just left the hospital, leaving me alone with The Boy. I've been here since around 1 o'clock - it's 7:30PM right now - and been alone for about four of the six hours. I'm okay with that, because I'm a fairly self-entertaining person. It was nice to have Grandpa & my brother here for a while, because I went for a walk to feed my caffeine addiction and ate and did my teeth and stuff like that.

I hesitate to say this (being a firm believer in The Jinx), but this time has been much, much smoother than last time. He's still happy and playing, which is a big change from last time. I'm not expecting anything more exciting than the snow in the weather report tonight. Instead, I'm looking forward to polishing off a couple of magazines and working on some parts on Sibelius for my school jazz band.

Last night was a pretty decent night, all things considered. The Wife had off from school yesterday due to snow, so she and Grandma checked The Boy in to the hospital at 9AM. They were out of admitting and into a room by 10, but the chemo order wasn't filled until 5:30PM. Sigh. I went home and relaxed for a bit and napped until 5:15, then shoveled the driveway and steps, showered and went to the hospital. I sent my wife home soon afterwards, and I stayed until Grandma and The Boy fell soundly asleep.

I got home around 10:30-ish and was asleep around midnight. We slept until 8:00, which was awesome. The Wife woke with a head cold, so she was grounded for the day. We ate breakfast, and I left for church choir rehearsal up north, stopping at the hospital along the way because I had my medicines there. I was back at the hospital at 1, and Grandma left soon after.

We played for a couple of hours then napped for an hour and a half. Grandpa came soon after. We watched football and listened to some holiday music - Amazon had the Brian Setzer Orchestra's holiday album on sale for $3, so that's what we listened to.

The Wife's sisters are here. They took her for a pedicure, and I'm told that the plan was for some housecleaning. I'll believe that part when I see it. I'm glad that she had some bonding time with her sisters and mother. That's a little too much estrogen for me.

Whatever.

I moved our copy of "Goodnight, Moon" onto the iPod. This is a special by HBO that is based around the book, which everybody knows is a wonderful, charming and special book. This has Susan Sarandon reading Goodnight, Moon; Aaron Neville singing Brahms' Lullabye; Natalie Cole reading Tar Beach; Tony Bennett singing a goodnight song; and a bunch of really, really cute kids talking about dreaming, among others. I'll be interested to see the play count of Goodnight Moon when we're done for the weekend - dollars to donuts says that the playcount for the weekend will be somewhere around 20.

(BTW - this is not a copyright violation. Considering that we own the DVD and brought it with us, moving it onto my own iPod for my own personal use is considered Fair Use. I'm not breaking any laws.)

As long as things keep going so well, I'm happy.

Friday, December 19, 2008

Busy Week!

Not that it's an excuse. It takes, like, 30 seconds to type a short blog entry. I'm just lazy.

The concert Monday went well - I'm very, very proud of my students. The performance on Tuesday went well also - the Dapper Dans are awesome. The party Wednesday night was very fun - The Boy started eating at around 4:30, and he stopped - I kid you not - around 9PM. Little fatty is starting to get his second chin back... Thursday night's rehearsal went well, all things considered, and The Boy's counts came back GREAT!


Chemo today. My wife has no school. I'm not so lucky. That's frustrating, because #1) I want a snow day so I can sleep an extra few hours, and #2) the kids are going to be grumpier than I am.

Tuesday, December 16, 2008

House Changes...

Earlier this week, I bought a Purell hand dispenser to hang on the wall next to the front door - one of those automatic ones, that spits the stuff out when you stick your hand underneath. With luck, having a ready supply of batteries will mean that this thing will be a good fit. I'm going to pick up some disposable masks when I go to CVS tomorrow, in case people come to visit. Tomorrow, a guy from Sears / Kenmore is coming by to look at our furnace and air conditioner. We likely need a new one - something that's a little cheaper to operate and will actually blow heat in the winter and cool air in the summer, unlike what we have now. I don't want to let a stranger in the house without trying to get as much sterilization as possible.

That's all we need right now - for The Boy to get sick right before chemo starts. That would likely not delay chemo this weekend, but it would make it significantly more unpleasant than it's otherwise likely to be. I mean, look at last time - how other stuff other than the chemo made things that much worse.

When they felt that they had to catheterize him on the Friday night, they wound up doing the procedure twice. The first time, he had just emptied his bladder and they found no urine. The second time, they did. He screamed in pain the entire night because of the second time.

When he caught that stomach virus, he was throwing up and feeling more miserable because of it. It was horrible, that's for sure. The throwing up and the virus extended his hospital stay an additional three days.

Man. What do normal parents think about? It drives me crazy sometimes. I can't imagine a normal household. Imagine, if you will, a household where people only think about stuff like catching colds, walking, talking, eating and pooping. Imagine, if you will, a baby blog that discussed baby poop as normal instead of the bright, Mountain Dew green colored poop that will be The Boy's while undergoing this particular chemotherapy regimen. Imagine thinking about seeking playmates and picking up toys, instead of worrying about sterilizing contractors.

Weird.

A Good Weekend & Concert

I'm pretty happy right now, all things considered. It's been nice to NOT have to give The Boy his nupagen shots, and he's been doing really, really well. Today, for instance, he ate like a little piggy: half a pancake, a bowl of oatmeal and a bowl of cottage cheese mixed with jelly for breakfast, with half a glass of juice to boot. In addition, he's been crawling around, and cruising around, and playing with everything in the universe at the same time.

The Boy came with my father and me to my concert last night. He was a big hit - my students agreed that he is really handsome and cute. He got scared by the 6th grade band. I'm not entirely sure if it was because the sound was too loud or because the percussionists were out of rhythm. I suspect it was the latter. He made it through the first two bands before falling asleep (G-d only knows how).

Busy rest of the week. Tonight I have a caroling gig in Livingston, then a school thing for Molly on Wednesday, then a rehearsal while The Wife has a concert on Thursday, then The Boy starts chemo on Friday morning.

Hope he's out by Christmas. I want to put my tree up soon, before my mother in law gets here. It annoys her when the tree is up, which makes it that much more fun for me.

Friday, December 12, 2008

Oh, What a Night!

...late December, back in oh-oh-8...

Tonight was the holiday party at the Valerie Fund Center - well, held in the auditorium at the hospital, but sponsored by the Valerie Fund Center. What an AMAZING night.

They had a comedy-magician there, who was wonderful. The tricks were par for the course for that sort of thing - the steel rings, the card tricks, spinning dishes, light juggling, et al. He was talented and able. He was really cool at the beginning, traveling around the room and doing light entertainment and tricks for the early arrivers, like we were. His jokes were wonderful - very quick-witted and Whedonesque. I love that sort of Joss Whedon / Kevin Smith / John Stewart quick-witted, three-layers-of-connection humor.

They had face painting for the kids - I guess for the adults, too. The Boy is a little too young for this sort of thing. Besides the whole "sit still and don't move your head" thing, he doesn't really recognize himself in the mirror yet. So, painting his face won't entertain him because he doesn't GET it. Whatever - next year, he'll love it.

They had arts and crafts - one table of decorating a sticker-snowman with other stickers, and another table of drawing and coloring. This was staffed by teenagers, who I assume were volunteers. The Boy liked the whole sticker concept and enjoyed playing with them. Mostly, he'd try to stick the stickers on the paper and, failing that, would stick them to his head. This stems from the "get the remote balanced on Daddy's head" game that we play all the time.

They had a disc jockey who is one of the pediatric wing security guards. The music was WAY too loud but well-chosen and an appropriate mix of styles, genres and artists for the varied crowd.

The food was not to be believed - lots of yummies. Cupcakes with about five inches of icing on top. Cookies of varied shapes and sizes. Two types of cocktail franks, baked ziti, chicken of various types. Plus, all the soda that one would want, and decent coffee. Plus, chocolate on every table.

They also showered the kids with gifts to take home - not just the cancer patients and former patients, but their brothers and sisters as well! The Boy got a new one of the drum that he loves to play with, and a toy guitar and a house-thing with lots of buttons and noises and stuff. The drum, we're really excited about. He loves that drum in the playroom. It's his favorite hospital toy.

Maybe we set this aside for hospital use only?

Anyway.

They also had Santa Claus there. We don't do the Santa Claus thing, which I'm not too happy about. But, I knew there would be sacrifices when we chose to raise The Boy outside of my cultural-religious background. Cie la vie. If that's the worst thing I lose, we're doing okay. As long as I can decorate the house and a tree, then I'm happy.

Tomorrow is an all-day barbershop thing, which I'm lukewarm about. It will be fun, I guess. We'll see. I kind of know everything I really need to know about directing a chorus - I mean, it's not like I haven't been directing groups for - oh - the last decade. It is nice to have a reminder about stuff, particularly during this time of extraordinary busy-ness. I've been neglecting my barbershop duties lately, just like I've been neglecting my housework.

I think I'd rather stay home and clean. If my chapter hadn't written a check for $60 to send me, I'd blow it off and stay home. I'll sleep until 8 o'clock instead - it's two towns over, which is a nice change for a barbershop event. It will be fun, I know it will - once I get there, I'll enjoy it greatly.

Good news!

The Boy went in just for counts today, and - surprise of surprises - he was only there for counts! No transfusions, no tests, no admittance, no nothing. Show up, get his finger stuck for blood, go home. Dassit.

Wonder of wonders. I think that's the second time, total, that he's been in JUST for counts, without something else going on.

I should have had our babysitter (who took him) grab me a donut. But, I didn't want to jinx things. You understand.

Holiday party at the Valerie Fund Center tonight. Lots of bald children running around like crazy folks. Should be fun, and I'm glad we can actually attend.

(What kind of world do I live in now - where, at a party, it won't be strange to see a bunch of guests with IVs?)

Thursday, December 11, 2008

Yawn.

Long day. Longer bunch of days coming up.

The Boy is fine. He's actually a tad better than fine, right now: he's active, happy and eating like a horse. This morning, he polished off a bowl of yogurt and a bowl of oatmeal, the latter by dumping it over onto his tray and picking up the pieces individually. The dip-the-spoon thing worked great until it cooled enough to congeal. After that, he kept trying to bogart my pancakes.

School was interesting today - an a cappella group, "Ball in the House," came by to perform for the school. I heard the show one and a half times - one that I actually sat through and listened, and the second that I was in and out during the performance. The good part? I love a cappella music, and any chance I have to promote a cappella (and male singing) is gleefully and enthusiastically taken. The down part? With two school days left before the concert, I hated losing half of most of my periods due to the assembly. Still, if those twenty minutes REALLY make that much of a difference to the concert, then I screwed up back in September.

After school, I spent a couple of hours moving risers and setting up chairs and stands. Tomorrow morning, I have special rehearsals with 65, 39 and 70 kids in the auditorium at school. The outer rehearsals are two periods long each - making 80 minutes plus passing time. Granted, most of that first period will be settling kids into the correct chairs (and making the changes in the seating chart that I need to make). Still, I'm praying that the stage setup that I left at 5PM today will still be there at 7:30 tomorrow morning - or I'm going to lie on the ground in a fetal position, sucking my thumb and crying until the chairs magically reappear.

But, I digress.

I got home around 5 o'clock and woke the baby up when I walked into the house. That was fine, as I wanted me some baby snuggles. Baby snuggles I got. At dinner time, I felt really, really, really guilty. Being starving (amazing what two hours of moving choral risers, band chairs and percussion equipment will do for the appetite), I polished off one and a half servings of steak in about fifteen seconds. The Boy was absolutely crazy about eating steak tonight, and he ate half of my wife's portion and demanded more.

Considering that we're on doctor's orders to feed him what he wants to eat, I realize that I should have saved some of my steak. I feel kind of bad that he was asking for more steak and we had none to give him. Live and learn - next time, I'll save some. It wouldn't have affected my appetite or satiation at all to have a silver dollar-sized portion for him, and it might have made his night a little better.

After dinner, we gave him his Nupagen shot. All of us hate this. I strip his pants off, my wife sterilizes his leg, grabs a hunk of flesh and sticks the needle in and empties it. The Boy screams like a banshee before she comes near with the needle, because he's not stupid and realizes what's about to happen. Afterwards, he and I console each other with hugs and snuggles, and eventually he forgives us. I left for choir soon after.

I cringe to think about what it's going to be like when he goes through his terrible twos, like I'm hearing about with one of the secretaries' grandsons at work. What's The Boy going to do? Refuse his medicine? Start ripping tubes out of him when he's in the hospital? (That can be catastrophically bad.) Start swinging at nurses when they come at him with medical intent?

Throwing a temper tantrum wouldn't be the answer. He'd go flat on his belly & get stuck with a needle in his butt for his time. That would actually make life easier for us. He'll need to be more creative with his tantrums.

But, time marches on and he develops despite our best efforts to chemically destroy his immune system.

It begs the question: who is the person who first said, "Cytoxin... hmmm... this chemical will render you sterile, hard of hearing, sick and dead. I know - let's stick it in cancer patients and see what happens!" That guy should be in the hall of fame next to the dude who first realized, "Hmmmm... fungus.... if I take this and chop it up, it'll taste GREAT on a pizza."

Wednesday, December 10, 2008

Unpredictable...

So, we're home. His counts have come up enough that there's no sense keeping him in the hospital. Kid his age, he needs to move around and get into stuff and throw stuff and crawl and walk and things. That's better done at home. The only catch is that we've got to bring him in for counts on Friday morning, and likely a transfusion if his counts aren't moving in the right direction.

(And, if so, we're likely to do this all over again - a post-transfusion fever and a weekend in the hospital. Sigh.)

At least I get to sleep at home... this afternoon, I did get to jog and to nap, and I even had dinner with my family. The concert went well, and I think I made some friends with staff at Roosevelt. We'll see.

The Wife's going to try to get The Boy to sleep in his room tonight. Maybe I'll even get to play some snugglebunnies... not likely, but who knows?

A good night, I guess.

Last night, we had a caroling gig at Mountainside Hospital. There were 20-something guys in the chorus, and six people in the performance room. Sigh. Although, the nurses told my father, later, that all the televisions on the floor were off - meaning the people in the rooms were listening to us, even if they weren't able or weren't willing to head down to the performance. Whatever. It was still fun.

Got to the hospital post-gig at around 8:45, then did my usual shower & pre-bed stuff. The Wife left around 9:30 - more like, was pushed out of the door. When either parent dithers around during leaving (whether is LM or me), The Boy goes nuts and won't calm down for a while. He calmed pretty quickly. He fell asleep around 9:45, and I followed at 10:00, after trying to watch last week's "Fringe."

There was a brief wake-up at midnight as he was getting his vitals measured. Neither of us woke at 4AM for his vitals. We woke next at 6:30AM. ZOMG, a full night's sleep in the hospital! Holy crap! Also, incidentally, my second 8-hour sleep night since before the surgery. I'm still tired.

After work today, I'm going to come home and nap for an hour. Then, I'm going to jog a mile or two, clean the house, clean myself, and go to the orchestra & choir concert at school. Then, I'm off to the hospital to take the overnight shift. The whole thing starts again tomorrow. Sigh.

Tuesday, December 9, 2008

Okay.

He's fine, more or less. They have him under observation because, after the blood transfusion (his numbers were REALLY low, which explains his lethargy on Sunday), he spiked a fever. When we got to the hospital room (it generally takes a couple of hours for them to prepare a room), his temperature was 103 according to the thermometer - I don't really believe it, because he didn't feel THAT hot.

(One thing I do very well - I can usually predict his temperature to within .1 or .2 degress farenheit. No way was he at 103. 99.8, 99.9 tops.)

Whatever. He's there anyway. The Wife is with him tonight. Dr. Rifkin said we'd be there until his numbers improved to her satisfaction. The nurses say a minimum of 48 hours. I say until the weekend.

Nothing better to help Concert Week along than being tethered to the hospital. Boy, this is going to be a fun couple of years.

All I've got to say is - thank G-d that my father, my brother & his family, and the rest are able to cover time for us at the hospital until The Wife is done with work. Neither one of us can miss time - these next few days (for me) and two weeks (for her) are crucial.

I'm bringing a coffee machine to work tomorrow. I'm tired of paying $2 for a cup while I'm there. It's time to buy in to the Dark Side for the next whatever.

We expect him to be fine. But, wow - this cytoxin & etoposide are nasty, nasty stuff.

Monday, December 8, 2008

Frustrating.

The Boy is being admitted again. His blood counts were REALLY low today, so he received a transfusion. Then he spiked a fever. So, here we go - in the hospital again.

What the heck are we going to do? I can't miss any more days - I have a concert in a week, which is my first concert (and first impression) at school. The Wife can't miss any more days - she's only got nine left, period.

Frustrating.

Sunday, December 7, 2008

Quick Hits

Typing blog entries on the iPod Touch is not as easy as typing on the keyboard, but I'm lying in bed with my family and don't want to move.

This was a good weekend. The Boy wasn't active the whole time, but he was in a good mood the whole time. Today, he napped in his toddler ned, which is new as of yesterday, along with a couple of ceiling fans and dressers that my brother and I installed yesterday. The Boy's napping was significant because he hadn't slept in his room since before the start of his treatments. We are going to make an effort to make his room a more joyful place, to ease his transition to sleeping alone.

He is becoming more communicative. "App" means apple or apple sauce, and he can say "joos" for juice. He also will crawl up to his high chair and yank on thestraps to indicate hunger. Pointing is fun, as well.

He was very snuggly all weekend. Even at the comic book store, he crawled up to L and gave her some snuggles. Not a bad thing. Typical one week post-chemo reaction - tired and sleepy but not unhappy.

The house, today, is much better organized and set up than it was a week ago. And, it is nice not to be in the hospital this weekend. Next weekend is busy: barbershop on Sat, followed by a holiday party. Monday after is my concert and The Wife's, then chemo set #2.

Saturday, December 6, 2008

A Good Day

Today didn't start promisingly. The Boy ate a Trader Joe's cereal bar for breakfast, which was what he chose to eat. He threw it up about fifteen minutes later, all over his and my clothes as we were starting the final departing procedure. Sigh. So, I called the center and prepared to bring him in for a check-up.

The doctor bitched me out about the food choices that we made. Turns out, the chemo combined with the stomach virus ripped the lining of his gastrointestinal tract to shreds. What this means is that he can only really digest simple foods for the time being - potatoes, rice, apples, that sort of thing. Dumb Musical Daddy is trying to feed The Boy gluten free cereal bars and such. S-M-R-T, smart, smart, smart.

Anyway. I went to school, made the plans to get him into St. Barnabas and left school a little bit early. No biggie. I arrived at the hospital at about 1:15. My brother was there with The Boy. I gotta say - my brother and his wife did great by us this week, for sure.

Granted, TB was in a great mood today and felt like winding my brother around his little finger. Point of order: the three of us were sitting on the floor, playing with blocks. The Boy crawled over to my brother, used his shirt to stand, then put his arms out and hugged him. Game over, man, game over... My brother was dead in his tracks, completely at the mercy of this cute little man.

We got home around 3:30, after discovering that his white blood count was 0.7, which is REALLY low - basically, a step above no immune system at all. He and I played for a bit then napped until Mom got home, and we played for a bit afterwards. The Wife made all of us dinner, and I left for my marching band dessert.

It's interesting how The Boy is becoming more interactive with us. He conveyed extreme hunger tonight by crawling over to his high chair and yanking on the straps. When we picked him up and brought him back into the living room, he crawled back, pulled on the straps and looked at us expectantly. The Wife made a cream of rice with honey bowl for him, which he loved.

When I got home tonight, he was asleep on her lap. He opened his eyes and reached for me when I came close. I grabbed him, changed him into his night diaper and pajamas, and tossed him onto the bed. The three of us had great crazy baby time for a while. Our new bed frame has a shelf behind the bed, where the remote controls are kept. I'll be interested to see how things are going to work with the baby and that shelf. Anyway, he would crawl over us and up to the shelf to pick up a remote or a water bottle or whatever.

So, I'm playing with him at this point. He turns his back to me, crawls to the shelf and picks up the Vitamin Water bottle I had been drinking earlier. He crawls back, sits down, holds the bottle by the top and proceeds to hit me on the head with it repeatedly, grinning widely at Mom. This is hilarious, naturally, so we're laughing our rears off (they came back, with friends) and passing those laughs to him. Really funny moment. He's quite creative and intelligent, and he's already developing into a bit of a wiseass.

He gets that from his mother, I'm sure.

Thursday, December 4, 2008

We're home...

...which is good news. The Boy got home this afternoon at around 6 o'clock.

I got home from school around 4. Today was a tough day. Last night, at the hospital, he and I had a hard time at night. I finished up my computer work and tv watching at around 11-ish, which was good. I slept for a half hour until woken up by our night nurse, who came in to take The Boy's blood pressure.

For some reason, the night nurses give The Boy his medicine at, like, nine o'clock. That's frustrating, because we're trying to convince a sleepy, grumpy toddler to take gross-tasting medicine. Plus, this particular night nurse - who I had on Friday night when I stayed over - is as quiet and subtle as the oft-spoken bull in a china shop. That doesn't help.

But, I digress.

The rest of the night was spent alternating between a light doze, interrupted deep sleep and soothing a wet or recently changed baby. At 5 o'clock, I finally gave up and started packing up in the potentially vain hope that we'd be going home today.

The hardest thing about this whole cancer treatment is the arbitrary nature of time. Stuff happens when it feels darn good and ready to happen, not in any kind of logical or predictable manner. It makes life extremely difficult and puts a premium on flexibility. This is, of course, completely antithetical to the lifestyle of public school teachers and band directors in particular. Our lives depend on dependability, on schedule, on routine and predictability. I can tell you, to the minute, where I will be, with whom I will be and what I will be doing (within reason) at any point during the school day between now and the predicted end of The Boy's treatment.

So, here comes the cancer treatment, and suddenly EVERYTHING is thrown into doubt. At any given point, we have had to drop everything and rush him to the hospital for emergency treatment. At any given point, we have had to delay treatment or surgery or whatever for weeks. At any given point, we have stopped our discharge plans and settled back into the hospital. Very, very, very, very, very difficult for me in particular.

But, I digress.

I arrived at home at 7 o'clock to get my deodorant (particularly important because I hadn't showered in 48 hours) and my saxophone and my lunch, and I arrived at school at 7:15 as per usual on Thursdays. I practically fell asleep teaching a class at around 10:45AM, so I jacked myself up on coffee. That lasts until the end of lunchtime, when (of course) they stop making new pots of coffee and throw the old stuff out. Gotta get myself a coffee machine. Struggle and make it through my last period class by playing a lot of trombone and being excessively praising to the kids. They think I'm acting weirder than normal, but they were happy because we played beginning to end in most of our concert music and that's a change from normal. After school, I discussed marching band awards (thanks for the call, Band Guy, b/c I forgot entirely about the Marching Band Desert Friday night) for about 20 minutes, then I ran some photocopies of necessary stuff for tomorrow's lessons, cleaned up my stuff, then got word that The Boy was actually coming home. I got home at 4 o'clock and passed out cold.

At 6, I woke up and showered - a 15 minute shower, which is really long for a bald guy. They got home a few minutes later, and I snuggled The Boy for a minute before he started to play with all of HIS toys in HIS living room. Then I jacked myself into more caffeine and went to church choir practice, stopping for a Quick Chek sandwich and cookies on the way. Now, it's 11:20, the caffeine is worn off, and I'm still typing on this computer. Why? I dunno. Just trying to procrastinate going to bed, because tomorrow is another busy day, and after school I have to face the fact that my house looks horrendous.

I mean, it's not like we were just away from home for over a week, or anything like that, right?

Wednesday, December 3, 2008

Waiting for Godot

Here I am, lying on the inflatabed at the hospital at 9:30PM, with a baby snuggling up close by my right side, a hot laptop on my lap and Futurama on Comedy Central across the room. I did have a half hour of sitting time by myself, which was nice.

I love the fact that The Boy loves sleeping with us and derives such great comfort and support by our physical presence. I don't like the fact that, these days, he won't sleep at all without a person underneath him. That makes many things very, very difficult. It pretty much ties one person to the bed at all times, making conversation, talking on the phone, watching television, or snuggling with my wife very difficult. When I'm here by myself - or when anyone is here by themselves - it's very, very challenging. Getting up to go to the bathroom can be traumatic for everyone involved, particularly if he's close to the edge of the bed.

He is very, very cute, though. Lying there, his eyes partially open and rolling up inside his head... it's funny.

He probably will be released tomorrow. We hope. My brother's family is coming in around 6AM to relieve me, because I have 7:30AM jazz band at school. In addition, I have a meeting with an assistant superintendent 2nd period and with the principal 8th period. So much for prep periods, and me with a concert in two weeks. With luck, they'll release him around 10 o'clock, and Aunt M will take care of him until The Wife gets home from school. I have choir rehearsal tomorrow night, which I'm going to try to get to - I need the money, and I'm feeling well enough to sing for a couple of hours. (After all, I've been out of the hospital now for nearly 48 hours!)

Postion shift. He moved from next to me to across my chest. Makes typing a little more difficult. We'll see how long this lasts. I want to get something to drink and some tummy medicine - a little leftover reflux from my issues this week. I didn't eat dinner tonight, but I had a big lunch and decent breakfast. I'm not happy about eating around 1400 calories a day since Sunday, but I guess it's good for my weight loss diet. Particularly since I've been making an effort to drink four or five full plastic water bottles at work in order to stay hydrated.

Sick and Tired of the Hospital...

In this case, a literal translation of "sick and tired." Sigh.

The Boy is still in the hospital. He's just not eating and not keeping anything down when he does eat. The good news is that he's keeping them down for longer, but he's just not keeping food or milk or anything down permanently. The doctors aren't going to release him until he's as close to 100% as he's going to get, which means he's in the hospital for today and likely tomorrow as well. With luck, he'll be home by the weekend.

This is about the lowest we've been, morale-wise. Dr. Rifkin told us yesterday that, essentially, we can expect to spend as much time in the hospital over the next two years as out of the hospital. (What are we going to do with the new baby? I have a feeling that s/he will be raised in the confines of the hospital as much as at home. Should be interesting. Watch him/her become a doctor.) In addition, we're both sick, we're both exhausted and at the limits of our emotional endurance. Our house is a mess, our kitchen is filthy and we haven't eaten well or regularly in a week.

We have enough food - between my in-laws' generousity and the largess of the Chai Lifeline, we have a refridgerator so full of food that it will likely go bad before we eat it all. We just don't have the appetite to eat or the stomachs to hold food down right now.

It's amazing how quickly life can change. It's amazing that, on June 23, we had a happy, healthy, bouncing, fun little man, and 24 hours later, our lives took a violent left turn. And, four months after that, our lives are now irrevocably different. So long, having guests over the house (...unless they're 100% healthy and willing to scrub themselves sterile upon entry), hosting birthday parties for little ones, taking The Boy to play rooms and play dates (unless they're with other cancer kids who have sterile environments), taking The Boy to the park on days when the park will be crowded. Hello to frequent, obsessive hand washings, scrubbing down toys and floors and furniture, obsessive vaccuuming and scrubbing after and around and before every meal, wearing a mask when we feel the least sniffle coming on.

Man, this sucks.

Monday, December 1, 2008

Far, far too interesting...

So, The Boy had picked up a little stomach thing on Friday, which lasted into Saturday and gave him truly amazing colors of poo and puke. I mean, those fluids (and both were fluids, no solids) were a brighter shade of green than the Diet Mountain Dew that I like to drink, which is a shade that, I thought, doesn't exist in nature. Yesterday afternoon (which is Sunday), I felt myself starting to fade a bit. I excused myself at halftime of the Jets game from the hospital and went home to lie down.

I lay down, tried to go to sleep, and was hit with the most intense pain that I'd ever imagined.

This was horrible. I had some diarrhea, but didn't throw up. Instead, I alternated dizzily walking to the bathroom with lying in a fetal position on the bed. I wasn't even watching tv or reading a book or anything - I just lay these, moaning in agony. The Wife got home around 8 and hovered anxiously over me, trying to help. Finally, around 10, she forced me into the car and took me to the hospital.

I don't clearly remember the next several hours. There were images here and there: me complaining about getting an IV line put in (the only other time one was inserted was some minor surgery last summer, and I passed out immediately after it was put in), getting the painkiller shot and immediately vomiting a lot of fluid, arguing with a nurse that a 98.9 temperature was significant for me (I normally run a rock-solid 97.1 and never get fevers), watching five minutes of a bunch of tv shows before falling asleep again. Eventually, the painkillers kicked in and I regained a portion of sanity. They moved me into an observation area for the rest of the night.

This morning, they took me for an ultrasound, because they were afraid that my appendix had ruptured or my gall bladder had exploded or something like that. The tests were all negative. My organs were the picture of health. I got home around 2:30 in the afternoon and have been asleep most of the seven hours since.

The Wife has what I had, albeit a less painful version. She's got a temperature and no energy at all. Grandma doesn't have the stomach issues, but she's exhausted as well. The Boy seems to be okay, although he's apparently started throwing up again. They're keeping him one more night in the hospital to make sure he's adequately hydrated.

All in all, a far too interesting day. I really need a day or two more of bed time, but I have to go in to work tomorrow. I've missed SO MUCH time (most of them Tuesdays, for whatever reason) that I can't afford to miss more. I'd have gone in today if they could have gotten me home quickly enough... I'm honestly concerned about my job for next year, all things considered. I haven't eaten since 2 o'clock yesterday afternoon and am not hungry in the slightest.

We'll see.

Saturday, November 29, 2008

Weekend Update, with Musical Daddy!

Eh. A Saturday Night Live joke, even if SNL ceased relevance around twenty years ago, if - indeed - it ever actually was. Still.

This hospital stay has been... well.. a hospital stay. Not great, but not terrible. We've been lucky in that The Boy's chemo requires him to have experienced nurses, so we've gotten the cream of the crop. That's a good thing, particularly since Grandma has stayed three of the four nights and will be staying the fifth as well. He is still on track for coming home on Monday for...wait for it... The Rest Of His Treatments.

Sigh.

Wednesday was a bad night. They found bacteria in his urine, and they had to catheterize him in order to get a sample of urine directly from his bladder. This way, they could tell if it was a true urinary tract infection or just bacteria from around his stent. The first time they cath'ed him, there was no urine in his bladder. They did it again an hour or so later, and that trigger a LOT of pain and discomfort and nausea.

It doesn't help that the sweatshirt I'm wearing is older than some of these residents. When did they start giving stethoscopes and white coats to twelve year olds?

He alternated bouts of hysterical screaming with sleeping. My wife and mother-in-law were there all night and didn't have a good time.

Thursday was a great day. He was happy and active most of the day, and The Family arrived for T-Day dinner. We had it in the lobby of the pediatric floor. I slept through the actual dinner with The Boy (he was asleep, too) but we both ate our fill later. Thursday night was uneventful, with the nurse handling all of the two-hour diaper changes for Grandma.

Friday was my Black Friday shopping day, and I'm pleased to say that I was 4 for 4. I got the Playstation controller from Radio Shack that I wanted, and I got a lot of good clothes for cheap at Kohls (with the requisite 90 minute wait in line at the register - thank G-d for iPods, because I watched an episode of "Chuck" and half of the Shield series finale). I drove out to Ikea and spent some savings on a bedroom set, which I got for about half price. It's nice to have matching furniture in the bedroom for the first time ever. Then I bought discounted tires at Sears and joined my family in the hospital.

Friday night was my night in the hospital and was, fortunately, uneventful. I piled through a bunch of magazines and plowed through a bunch of children's shows on my iPod for The Boy. I did the diaper changes instead of the nurse, mostly because I was as OCD as usual and set my alarm on my iPod to go off every two hours. She was very helpful in entertaining him when I went potty, and she got me really hot water (for his bottle, which he didn't "need" until 5AM and could likely have gone without had I not brought it up). She was nice and helpful, though, during the two times that he peed in the midst of a diaper change.

That's scary because these chemo drugs are Big Nasty Mojo stuff and can't touch my skin and REALLY can't touch my pregnant wife's skin. All kinds of Bad Stuff can happen, so having that extra person there REALLY helped!

Anyway, The Wife and Grandma arrive around nine, and I went home around 10:30 and assembled 3/4 of the furniture that I bought. The house is still a mucking fess, because I haven't disposed of the old furniture - the dresser that was The Wife's dresser is REALLY heavy, and I need someone's help like my brother or one of my buddies. I finished and cleaned up around 8 o'clock and was at the hospital at 8:30, where The Boy and I played until we both fell asleep from 9:30 until 11, when The Wife and I left.

Tomorrow, Grandma's brother and wife are coming for a visit, where we're getting some hand-me-downs. Very nice of them. Inconvenient, because there's no definite time they're getting in from the city; Grandma needs to rest, because tomorrow night and Monday (when we're at school) are the only times that we REALLY need her. My father is in Florida now, so we need all the bodies we can muster. I'll be there after church. I have some school work to do, but nothing really pressing - just some transpositions and information sheets and such.

The chemo has gone relatively smoothly, but this is what I expected. The only major side effects are nasty diarrhea so far. Next weekend is when the bad effects will hit, if experience is any judge.

We'll see. Neither The Wife or I can afford to spend many more days out of school between now and Christmastime because of the busy, important concert season.

Wednesday, November 26, 2008

How did this happen?



Yup. My boys sure do swim real good.

The Wife is pregnant again. Deuce is due on July 4, 2009. It's a pretty good picture on the ultrasound - you can see (his) head and body, and see that he's exceptionally well endowed.

(Okay. That's probably the umbilical cord. A guy can dream, though, can't he?)

You can actually see the amniotic sack outline in the picture, which is pretty cool.

This does complicate things quite a bit, even though it is truly joyous news. For instance, The Wife will always be changing the baby with gloves on while he's in treatment and even between chemo. They can't both fall asleep with him on top of her, because Bad Things can happen is The Boy's diaper leaks and the fluid gets on The Wife's skin and stays there.

(Think about it. The chemo seriously impacts fast-reproducing cells. What is a fetus BESIDES fast-reproducing cells? Ugh. Miles Vorkosigian might be a wonderful guy and an absolute genius, but I don't want him for a son if I can avoid it - and that's a best-case scenario.)

But, still. This is happy news, and we're excited as hell about it.

The Boy is in the hospital right now. Chemo started officially at ten thirty. There was a holdup - the urinalysis revealed bacteria in his urine. It could mean one of two things: a urinary tract infection (UTI), which needs to be treated with antibiotics because an infection in the kidney or bladder is BAD; or, bacteria that has gathered around the stent and will disappear when flushed out with fluids for a couple of days. Either way, he's getting tons of fluids and antibiotics, but they don't want to delay chemo any more.

The Wife and Grandma are at the hospital. I was supposed to bring The Wife home with me, but she fell asleep. Considering that she slept through a port access and test and some poking by doctors, I think she's out for a while.

...at least until they catheterize The Boy. THEN she'll wake up.

Boy. It hurts just thinking about that one.

And So It Begins... (again again again)

The Boy is being checked into the hospital today. He has a hearing test scheduled for noon, so they have a baseline to compare the potential hearing damage to. Sigh. Just what a musical family needs - a kid with no hearing.

I think I'm staying at the hospital tonight. We'll see.

Monday, November 24, 2008

Milestones

Cool thing:

The Boy has figured out the whole "wheels" thing. He's got a couple of toys with wheels, and by "a couple," I mean around five hundred. He's figured out that the wheels roll. This morning, with a little school bus with frogs with musical instruments riding, he crawled up and down the hallway, with one hand rolling the bus along the ground. How cool is that? He's really PLAYING with stuff! With a little toy ambulance, he rolled it up and down my leg earlier while he was trolling for attention. It was very fun.

He also ate about half of the serving of french fries that I got at Friday's tonight. Little piggy-wiggy. Still, as the doctor said, "Whatever The Boy wants to eat, The Boy should be allowed to eat."

I'm up WAY too late and need to sleep. Jazz clinic & Dapper Dans tomorrow. Long day.

The Waiting Game, again...

Story of my life. This cancer thing is starting to be like the military. Move as fast as you can to get a battery of tests and examinations done, and then wait an undefined amount of time for the results to come back.

The Boy had an ultrasound today. Dr. Narang reported to Dr. Comcast (with whom The Boy had a postsurgical followup examination) that there was still a grape-sized bit of fluid on the kidney.

(Onion News report: an oncologist chooses to have multiple types of citrus fruits in his office in order to compare tumor sizes. "Most of my patients don't know how big a orangilo is.")

What does that mean? No idea. We haven't gotten a call back from the center about whether or not The Boy's treatment will start this week or next. My gut instinct says that if it was a no, we would have heard already. Instead, I think they're going to several separate opinions in order to come up with a practical solution.

We'll see. I guess we'll hear tomorrow. My guess at this point: ultrasound on Wednesday or Thursday, treatment starts Friday.

Barbershop Show This Afternoon

So, my chorus had a show this afternoon. We only sold around 300 to 350 tickets, which was disappointing; but, the show was a success by any other standard. We sang well, look good and had fun. The quartets sounded great uniformly. The afterglow was well-attended and fun.

The only problem? Well, me, in a nutshell.

I'm in kind of a funny position right now. So much of life is spent dealing with The Boy's cancer! We're scheduling tests, scheduling treatments, rescheduling most of our lives to try to fit around all of these things. For instance, the whole Thanksgiving thing. We're hoping that The Boy's treatments will start on Wednesday and that we have Thanksgiving in the hospital. Why? Other than the fact that sooner-start means sooner-finish, we also want the treatments to start on Wednesday because then we won't miss school. I'm having constant and continual conversations with my wife, my father, my mother-in-law, my brothers, my siblings-in-law, the babysitter, various friends and my employers, so that things may be scheduled and dealt with efficiently and thoroughly.

In addition, we've gotten such a huge and overwhelming outpouring of support of the community. From my father's friends, my brother's friends, my mother-in-law's friends, my friends, The Wife's friends and from complete strangers, we've been receiving a constant stream of telephone calls, cards, letters, e-mails, Facebook messages and such. We've been the beneficiaries of such generosity that my heart swells with emotion when I think about it.

So, what's the problem, other than the whole cancer-thing? It's that, every time I see someone, the conversations revolve around giving them the latest news about The Boy. It's about giving them cancer updates and treatment updates and chemo schedules and surgery reports. It's not about baby eating habits, standing on his own (which he did for about 15 seconds today, until he decided that he wanted to tackle me instead of stand - not to lean on me, but a full-body, "knock over Daddy" tackle), disgusting poo that he decided to play with, and the fact that he knows to point the remote controls at the television when he starts pushing buttons AND the fact that he knows how the swipe his finger across the touch screen of my iPod Touch and make stuff happen.

I am so appreciative of the support and caring. Please don't misunderstand me. Without the help of everybody who's helped, we would be freaking out immensely. Having said that, please understand that there are days when I >really< don't want to talk about cancer.

Today was one of them. Today, I didn't care about cancer. I wanted to talk about how proud I am of my chorus. I wanted to talk about how funny my baby is, considering that he spent most of the trip back from the restaurant last night (where he ate in a booster seat and not a high chair, for the first time!!!!) laughing at absolutely nothing. I wanted to talk about the CC Sabathia contract that the Yankees have offered that he hasn't picked up or refused yet, and whether or not the Yanks should sign A.J. Burnett or Derek Lower or neither. (In order: he's waiting until the Winter Meetings to sign; and no, maybe, maybe.) I wanted to talk about the Jets whipping the Titans and the Giants' great start to their season. I wanted to talk about how happy I am in my new teaching job, how - for the first time in my life - I feel like I've found a teaching home where I'm not going to have to fight to justify my job every single year.

I didn't stick around the afterglow of the show tonight. Usually, I'm one of the last two or three guys out of there. I love afterglows. I didn't stick around today, because I didn't want to talk about cancer. Is that selfish? I don't think so, but one is never certain. The Boy had a great time at the pancake breakfast show with his mommy, and he slept through her youth orchestra's concert. He and I went to a special comic book store sale after I got home, and he had a great time. He pulled some comics off of their shelves to look at, and he enjoyed the pictures of some manga. He also ate a munchkin and a half - well, all told, probably about .75 of a munchkin spread out over two munchkins. About 90% of his first munchkin, he crammed into my mouth. The rest of the second munchkin got crumpled in his hand and scattered over the carpet.

But, I digress.

If you ask me about The Boy, and I respond, "Fine, thanks," you and I both know he's not fine. He's got cancer. His health sucks right now, and it's going to suck even worse for a long time, once his treatment starts. The reason I'm saying "fine," is that I'm actually saying, "I really appreciate you taking the time to care about my son, but he's not doing so well right now. However, there's nothing new to report, and I don't want to rehash his last medical report again, so I'll drop this simple answer to you." At that point, please feel free to move the conversation elsewhere: "How's school?" "How 'bout them Giants, going 10-1 to start the season!" "How's your 403B (the teacher's 401K) surviving the stock collapse?" "What are you playing on your Playstation 3?" "How's your barbershop chorus doing?"

It's nothing personal, believe me. It's not that I don't want to talk about cancer with you (most likely). It's just that I don't feel like talking about the SAME THING, giving the SAME REPORT, over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over again.

(Yes, those were typed out and not cut-and-pasted.)

(When I said before that my insurance wouldn't cover the costs of some of his surgery, I was mistaken. We got a copy of the letter from the insurance copy to Dr. Comcast, which said that they weren't paying for part of the post-operative hospital stay because Dr. Comcast's office didn't file their paperwork correctly. The letter also said that they weren't allowed to charge me for it, either, until penalty of catapult. Hooray. One less fight.)

(I was kidding about the catapult part. That's a Simpsons joke. It would make a good punishment, though.)

Sunday, November 23, 2008

Little Pants

We have little, tiny pants on the floor right now.

They are very cute.

We can't wear little tiny pants. They are pants for little tiny people.

Little tiny people can be very cute. My little tiny person is very cute.

Little pants. It's a good part of being a daddy.

Saturday, November 22, 2008

Giggle Man

When I put The Boy in the car for the ride home from the restaurant, he laughed and giggled in the backseat for the first 20 minutes of the 30 minute ride home. That's very, very good to hear, and very, very wierd - I was playing the audiobook "Barrayar" over the iPod, which isn't exactly humor material.

He sat in a booster seat, not a high chair, at the Friday's. It worked pretty well. The only down part was, at the end of the meal, he reached out and used Mommy's shirt to climb out of the chair. That would have been fine, save for the food stuff on his fingers. Oh, well. It was laundry night anyway.

I wrote a handful of thankyou notes tonight. I feel really, really bad about the lack of thankyou notes so far. There's no excuse not to get them out. I just haven't. Granted, I've been a little busy, but there's still no excuse. If you've given me something and I haven't sent you a note, please forgive me and forgive us. We're not bad people, most of the time. Just forgetful.

My sister-in-law, in particular, gets very sensitive about it, and I feel very badly when I miss. I didn't write a thankyou note to a friend of hers who gave me something - and, worse, I forgot what I was given. I think it was a gas card or two. I try to get them out, I really do.

My oldest brother and I have a deal, regarding presents and cards. As long as they arrive before the next major holiday, we're good. If I get his birthday present (Sept. 17) there before Christmas, we're okay. If his Christmas present comes before my birthday (in the summer), we're okay. We're usually within a month of the target date, on either side. Granted, this year, I sent out the birthday and Christmas presents in August, and they opened them all in August, so... the best laid plans of mice and men and all that.

He snuggled right up to me on the bed and fell asleep tonight. It was perfect. He was at a great angle, comfy as heck for the two of us. Heavenly. Babies are such wonderful inventions. Particularly mine: he acts like a Musical Daddy Tranquilizer so often.

st00pid t00mers well pwn ur a$$ u dont no who ur messing with

Chubby Cheeks...

Today, in particular, I noticed that The Boy's face is becoming rounder and chubbier, almost as if he was a baby or something. It's really nice to see him start to fatten up again! Lord knows that he's been eating enough - yesterday for breakfast, for instance, he had an egg with ketchup and an entire challah dinner roll (less a few bites for Musical Daddy, to keep him interested). Plus juice and his medicines, which - come to think of it - I don't think we gave him this morning.

Sigh.

Aunt C is in town for the weekend. This afternoon - in about a half hour, actually - we're meeting Uncle B & Aunt L up in West Orange, along with some other high school friends of ours, to go see the new James Bond flick. Afterwards, Aunt C is bringing The Boy up, and we're going to go to dinner at the nearby Friday's. When we get home, I'm going to get out some Christmas stuff for my chorus show tomorrow (specifically some hats, and probably some lights so I can get started on that this week), write some thank-you notes (finally) and hunt down some music so I can do the "Roosevelt Idol" film for some kids tomorrow - I'm going to sing "That's Life", as performed by Frank Sinatra.

Hey, I ain't Sinatra, and it won't win me the competition (likely), but one goes with one's strengths. I'm sure their "Simon" won't be able to kvetch too much.

This morning, we woke up late and went to a late breakfast at the diner, with Aunt C. The Boy ate his weight in eggs, potatoes and french toast, even though he didn't like the french toast (freedom toast?) until I added the sugar-syrup. (The only thing I don't like about the diner: I want real syrup. Not the Smuckers brand high fructose corn syrup crap.) We got home and screwed around for a while. The Boy wore out The Wife, who is asleep. I left TB with Aunt Carla and lifted weights and am blogging as I wait for my iPod to sync.

I like this nice, boring time. Tomorrow will be fun - church, then Dapper Dans show, then sale at the comic book store. Then, housecleaning. Monday tells us when our life gets interesting.

Friday, November 21, 2008

Evacuation Drill

Evacuation Drill in twelve minutes. This is federally mandated, that every school practice this once per school year. Sigh. Always during my prep, and this'll run over into my 8th grade band rehearsal. They really need the practice, because the concert is roaring towards us like a freight train.

I'm concerned about the whole chemo thing. The Boy is used to sleeping with and on us - it is normal to find him sleeping at a 90-degree angle to the two of us, with his head and chest on one parent (usually, but not always Mommy) and his feet on the other. He likes to snuggle like that, you know? But, when he's on the chemotherapy, it's not safe for us to have him sleeping on us. If he pees, and the liquid settles on our clothes for hours, the chemicals can hurt us, particularly The Wife, for reasons that will be explained later. We're going to have to train him to sleep by himself for his time in the hospital.

...and that REALLY pisses me off. One of the greatest joys that I've ever had in my LIFE has been sleeping and snuggling with that baby. I love, more than practically anything I've ever done, napping with him and sleeping with him.

Look at this cost: buying a toddler bed for him. The sleepless nights that it will take for him to adjust to the new bed. The realization that, in order to be consistent, all of his sleeping is going to have to be in the new bed and not with us. The loss of the true joy and pleasure of snuggling a sleepy baby while we fall asleep.

Frakking cancer. Stealing one more thing from us.

Thursday, November 20, 2008

Fallout

So, The Wife is leaving her job at the end of December so that we can better care for The Boy. This is extremely disappointing to us, because her job is a great job for her (teaching orchestra) and one of the better places for orchestra in the state of New Jersey. She's been there for five years and really invested a lot of herself in her work. Plus, she hasn't been such a homebody during her time: she gets bored at home fairly easily. It's inevitable that she stays home, considering the status of The Boy's illness and considering some new family news that we'll announce next week.

This is, of course, scary as crap, considering the nature of the economy. On one salary, we need to pay an excessively large mortgage and all of our bills. Ugh. Thankfully, my salary is quite a bit higher than my wife's was last year, and my marching band and jazz band stipends are higher than they were. Basically, if all things remain equal, we'll be okay as long as I hold on to the Dapper Dans and the church gig. I'll pick up a lesson or two for some spending (comic book) money.

There goes my iPhone. Sigh.

The treatment plan goes like this: The Boy will be checked into the hospital and started on fluids, diuretics and antibiotics. When he's hydrated, he'll be given his chemotherapy medication slowly, over the course of a day or three. After the medication is given, he'll be kept in the hospital for another day or two for observation. It's very important that the fluids be continued while he's receiving the medication, because this stuff can really damage his bladder. When he's released, we'll be closely monitoring his blood levels in between treatments. He'll also be receiving nupagen for the duration of his treatment.

Now, the treatment is in three phases. Theoretically, the whole program can be completed in 30 weeks, if his blood counts stay high all the way through. That's not going to happen. He is going to delay treatment many weeks because of blood count levels. We've also been told to expect many more illnesses, sicknesses and infections because of the newer medications.

I told all of my students about The Boy's illness yesterday. It wasn't to elicite sympathy, although I'm sure that'll help. (smile) It was mostly to explain why I've missed so much time and to explain why I don't want them to come near me when he's sick. We'll see if they remember. I think they will. They're good kids.

Tuesday, November 18, 2008

Holy cow.

Two-year chemo regimen.

Every three weeks, a 3 to 5 day inpatient treatment.

Wow.

Our lives just took another 90 degree turn.

Wow.

Just, wow.

Quick Hit...

Another good day yesterday... he was crawling around, playing with every single toy he owns at the same time. Very cute. Standing up, crusing around, seeing different places where he can put his toys and find other toys - like, inside the arm of the easy chair, down the stairs, under the couch, etc. Lots and lots of fun, particularly when accompanied by random laughing and giggling.

He's developed the habit of pointing at me and laughing when I enter a room. That's what I get for leaving him for chunks of time with my father and with my mother-in-law. Sigh.

Yesterday, he was falling asleep and needed some help - so, I put my head flat against the matress, nose-to-nose with him, and fell asleep. How wierd is that - I can't sleep like that normally, and I can't sleep like that with my wife. But, with the baby? No problem.

Glad he's so cute. Nervous about the ultrasound & the chemo regimen today.

Sunday, November 16, 2008

Return to Normalcy

I feel a little bit more like a real human being and a part of a real family right now. It's amazing how little things make us feel normal again. In this case, it was a thorough scrubbing of our bedroom and the kitchen, the disposing of two weeks' worth of junk mail and a straightening of the living room. Plus, I did a nice, short little workout (ran a mile, did a quick full-body workout - my knee actually feels decent today, though) on Saturday night, and that also helps. My body doesn't feel right if there's no slight muscle soreness.

Things are still a bit screwy - we don't have the rhythm of cooking, eating and cleaning down correctly. Our sleep and nap cycles are still messed up. But, we're on the right path.

This week, I have grading to do (167 students assigned appropriate and reasonable grades for band), a new chemo schedule to adopt (meeting on Tuesday, maybe), some Gapbuster mystery shopping assignments (Wednesday afternoon), my sister-in-law visiting this weekend and the rest of my wife's family visiting next weekend for Thanksgiving. Busy week, particularly since it's very important to me to have a spotless house for my in-laws.

This was a good weekend. Friday was a traumatic night, after we got the news from Dr. Narang. Saturday was better: we did our usual out-to-breakfast thing. Interesting note - we went to Rise 'N' Shine, a little breakfast diner on Terrill Road that we've frequented over the past couple of years. Matter of fact, we've probably been there an average of every other week for three years. We haven't been there much recently, mostly because we haven't been anywhere recently and because the past couple of times we've gone there we've gotten bad service and mediocre food. We went there on Saturday because we hadn't been for a while. None of the servers who'd been there for years (and do know us) acknowledged us with a hello or anything. We were seated and forgotten about. We waiting fifteen minutes, starving at our table, as three tables who were seated after us received their drinks and their food - without us even being acknowledged by a waitress and an order taken. Depressing. We left and went to the diner around the corner from our house, where we were warmly greeted and, when I put in my order, the waitress said, "Ah. The usual, then."

Guess where we're probably going to go next weekend?

But, I digress. After breakfast, we went back to the house and spent the rest of the day in pajamas. We did absolutely nothing - cleared out the TiVo, watched the Rutgers game (flipped to the Michigan game, but they lost to Northwestern), and went shopping at Costco. We would have gotten out under a hundred bucks if it wasn't for the fact that I'm going to start taking the vitamins and supplements that I've taken off-and-on for a few years. That added $60, which brought us over a hundred bucks. We didn't get anything special - a case of Vitamin Water, a case of soymilk, a case of Sesame Street juice boxes (which are good - 100% juice, donchewknow), some grey fuzzy pants for The Wife and I to wear and a multivitamin, a fish oil and calcium supplement and some allergy medicine and Costco's brand of Alleve, which is good for my knee and neck injuries.

Got home, unpacked and ordered Applebee's to go. It was cool - called in the order, drove & parked in the specified parking spots, and waited. A waitress came out and brought the food, took my credit card and returned it. After dinner, I worked out, snuggled with the baby and we all went to bed.

Today, got up & went to church. I love the people at this church, I really do. If I had been a part of a community like this one when I was younger (Notre Dame Church didn't do a good job of roping me in, considering that all the other kids went to the other high school and not mine, so all the kids were already friends with each other in school and didn't have time for me), then I might have been lots more active with the church. These are just wonderful people with great attitudes and welcoming smiles.

After church, I cleaned out my car. A leak has developed in the trunk, so that when it rains the spare tire well fills with water. I vaccuumed out the water and used this excuse to clean out the inside of the car - vaccuumed, straightened, etc. We ate lunch and turned the Giants game on. A guy came over to take blood and urine samples for an insurance exam. He was a bit of a butcher - I actually thought I was going to pass out when he was taking blood, and I'm sure that I'm going to bruise. I don't bruise easily. The Wife went to a rehearsal, and The Boy and I napped for an hour before we played until she came home.

Giants won big over the Ravens. The Boy liked that. The Wife maintains that football fandom is matrilinial. I'll believe it when I see it.

Then, we ate dinner, I cleaned the kitchen, straightened out the rooms and am snuggling with everyone. We read some Winnie the Pooh and are now watching House, and he's asleep.

Friday, November 14, 2008

Family Time

This morning, The Boy and I went for an ultrasound at St. Barnabas. I almost slept through it; he was awake most of the night, so I didn't get more than three hours' sleep. (That's starting to sound like a broken record - "The Boy kept me up all night again." Apple-X (cut), apple-V (paste).) After The Wife left, he and I fell back asleep for what should have been fifteen minutes but turned into 45. Sigh. I also left the cell phone at home, which meant that I had no way to communicate with my father, who met us at the hospital. The procedure went really quickly and well, and we were home before ten o'clock. I fed the boy, gave him his medication, and went to school.

The Boy spent the rest of the day with Grandpa, which was pretty cool. The Boy slept for the rest of the morning. I came home for lunch, woke him up and fed him some grapes, bagel and pastry-thing - the last lunch/meal that the Chai Lifeline folks gave us. When I left, he was playing with his toys (Grandpa, I mean - David was trying to get the toys from Grandpa). He napped for a while longer, then The Wife and I got home from school. I left for marching band.

I spoke with Dr. Narang while I was at marching band. She told us that the chemo would not start on Monday because there was still some fluid gathered in the surgery place. That wasn't necessarily a bad thing, because they hadn't quite gathered all of the opinions regarding his new course of treatment. They want to meet with us on Tuesday, for an ultrasound followed by a consultation with Dr.s Rifkin, Narang and Kalamakar regarding The Boy's new chemo regimen.

(Interestingly enough, guess who is the only group NOT to get their opinions in? You get three guesses, and the first two don't count. That's right: CHOP hasn't gotten in their information. WHY do those people get such an amazing reputation?)

The new chemo regimen is likely going to be a difficult one. Nurse Debbie told us that they were strongly considering a two or three day per week, all-day chemo regimen. What that would likely mean is that our tentative plan of having my wife take time off from work would come to pass. There is no realistic way that she, or I, would be able to miss another day or two per week because of chemo - considering that an increase in intensity is also going to cause an increase in the number of sick days he needs. He's already been spending a minimum of a day per week at the hospital because of illness, and that will only get worse as time goes on.

Okay, that's not definite. Don't get me wrong. I don't know how his chemo regimen is going to go. Dr. Narang, quite correctly, is not going to discuss it over the telephone. So, we get to live in suspense for the weekend.

And, so much for my asthma doctor appointment on Tuesday. Maybe I can play the cancer card and get a better appointment time.

He did giggle today, both on the changing table and during Crazy Baby time. That was really, really nice to see.