Saturday, January 31, 2009

Day one & two of Chemo 1.4

So runs chemo stage one, cycle 4. This is a carboplatin (the one he gets over six hours) chemo on Friday and Saturday, and etoposide on those days and Sunday inclusive. Etoposide is the drug that requires blood pressure checks every fifteen minutes because it can cause a serious drop in blood pressure. That hasn't been a problem yet, even though The Boy is still on his blood pressure medications.

So far, it has been a pretty uneventful chemo for him and for me. I dropped them off at the hospital on Friday morning - I sacrificed my now-normal Friday morning practice time to go to breakfast at the diner. That was annoying because I actually had to get up to get another cup of coffee - a major no-no when you want a nice tip from Musical Daddy. I drove them to the hospital at that point, which was a mistake because I wound up being late to school. Next time, I think we'll have breakfast in the hospital cafeteria. That way, I can leave the hospital fifteen minutes earlier and make it to school on time. They checked in without major incident and got settled in room 4201.

I hate room 4201 as much as I hate ... um... I think it's 4210, the room next to the other door to the step-down wing. I hate those rooms because of the sound of the doors opening and closing at all hours of the day and night - and the doors to the outside are LOUD. Particularly if the departing party isn't smart enough to have the nurses let them out. Then, a loud alarm sounds and a voice says, "Door will open in 30 seconds. An alarm has been sounded and security has been notified." They have that, I suppose, because - even though the kids are supposed to be secure - emergencies happen. The nurses will rarely close the doors to the rooms, which means that these sounds echo through everything that happens.

I arrived at the hospital at around 5:30, roughly at the same time as my wife's parents. I was delayed because of impromptu meeting / conversations with my supervisor and colleagues at school. Grandma was bustling about, doing the Grandma thing, and Grandpa was doing the Grandpa thing.

I definitely appreciate and am continually amazed at the level of support and help that my wife's parents give us. Don't get me wrong. I love it and appreciate it more than words can say. But, when there are four adults and one toddler, I really feel superfluous. I know that The Boy loves me, and I know that he knows that I think he's the greatest guy in the history of the world not named Joe DiMaggio. I treasure all the time that I can spend with him, but there's only so much that can be done in a small hospital room, already crowded with an adult-sized bed and a hospital crib, with four adults.

So, I stuck around until a little after 8 o'clock. I played with him for a while, ate dinner with him and shared a treat or three. (Yesterday, I took off from recording my food in the food diary, and I'm reasonably sure that I hit the no-no mark of 3,000 calories without breaking stride.) I did get to see him push himself up to standing without grabbing onto anything, which was awesome. I got to see him do some coloring, which is always cool.

The first day of chemo, for obvious reasons, is always the easiest. He's not bored of the hospital yet, and he's not bored with his hospital toys. He's excited to see Grandma and Grandpa and not angry at the nurses yet. The drugs aren't affecting him yet. No problems were reported.

The Wife and I left at around 8 o'clock and went home for the evening. I exercised, then we watched Battlestar Galactica. Best show on television, without a doubt.

This morning, I went to region band auditions. The region band consists of grade 6-8 players from central New Jersey. They audition on scales, a prepared piece and sight-reading. The best players are selected to form a band, which meets four or five times under the auspices of a great conductor and educator. The concert is a fun cap for a great educational experience. I had six students audition today. The directors help out at the auditions to make the process work. I arrived there at 7:45AM and left at around 1:30. I went home to shower (lots of sick and coughing people) and change clothes, then I headed to the hospital.

Wanna hear something weird? The Starbucks in Millburn doesn't brew decaf after 12:00PM unless specifically asked to do so by a customer. I am not a Starbucks fan, but I have, like, $75 in gift cards from students and friends, so I am temporarily a Starbucks fan. Besides, I can speak Starbucks when I order - "Venti half-caf with room for milk" means half regular-half decaf, large coffee, with a half-inch of room at the rop. I would stop at the Millburn Starbucks instead of the Springfield one because it's a more convenient location; but, the four minutes that it takes to order (plus the inconvenient walk from the nearby parking lot to the store), makes it too much of a time-waster.

I arrived at the hospital at about quarter to three, and The Boy and I enjoyed a snack of "ips" and "dip." I know I'm not supposed to encourage "ips" instead of "chips," but it is SO darn cute! Kind of like my niece, "J" - she used to say "Pasketti" instead of spaghetti. It's very funny to watch The Boy get a chip out of the Pringles can - he reaches in up to his shoulder to reach the bottom of the can. After our snack, we enjoyed some crazy baby time while I chatted up the Chai Lifeline volunteer, R. She's nice and The Boy seems to like her. The Boy finally settled down around 4 for a nap, and everyone but me left. I napped with him until 5.

Neat feature of the new iPod: it's got a mini speaker inside of it, so no headphones are needed to watch a television show at a low volume. I watched the end of an episode of "Legend of the Seeker" and the recap episode of "Lost" that ran two weeks ago. At this point, The Boy woke up and Grandma and Grandpa came back.

He saw his dinner (no comments about the ineptitude of the dining services person who couldn't pull the table bottom out without wrecking stuff AND THEN walked all over The Boy's playmat) and wanted some, but freaked out and pushed it away when we served it to him. Now is the point that he's getting nauseous - it's Day Two of chemo, after all, and carboplatin is nasty stuff. Grandpa and I cleaned the playmat where the idiot walked on it (okay, I lied about the comment bit), then the two of us left.

Grandma reported that he threw up a bit while taking his medicine, which wasn't a shock. He sometimes does that when he's NOT feeling nauseous already. I did a couple hours of schoolwork, then run some and blogged. I'm going to be asleep by midnight, I hope. See you more tomorrow.

Thursday, January 29, 2009

Talk this way...

The Boy took about five or six steps last night, in the "Mimi Maternity" store at the Bridgewater Commons Mall. He & I were waiting for The Wife to finish buying her temporary-fat clothes, and I was walking with him. I let go, and he kept going. When his butt hit the ground, he clapped along with me; in such a celebratory moment, he gets tossed in the air. He enjoys that very much.

(Again, I'd like to note: never once has he thrown up on me when I've tossed him around a bit. I'm smart enough to be able to read his physical cues. Back to your regularly scheduled blog.)

At home later that night, he took a nasty face plant. (Or maybe that was Monday night. Not sure which.) He wasn't really doing anything. He was just standing there, then BOOM! Face first into the ground. He wasn't thrilled about that at all. I was exercising at the time. So, I guess that was Monday night, because I didn't exercise last night until after 9 o'clock.

Last night wasn't such a great night. I was messing with the new iPod (went with the big iPod Touch, because The Wife wants to play with the old iPod Touch, and I want the toys in the new one - the speaker, the exterior volume switch, that sort of thing) for a while, then I sat with The Boy for an hour while The Wife practiced. Her orchestra practice was cancelled. At 9:10, she took over for me and I exercised. I sat down afterwards to watch Lost, and with about 7 minutes to go, she just lost it.

No pun intended.

He was feeling very sensitive last night. It took an extra long time to get him in bed and to get him asleep, and when one of us left the room, the squeaky floor woke him up again. About the fifth time that happened, she just flipped out, herself. Whatever. I sat with him for about an hour, until he was calmed and asleep, then went outside to finish Lost. Bad part of the story was that I wasn't asleep until almost 1AM. Good part of the story was that The Wife got a bit extra sleep that she obviously really needed.

It's something that we've had to learn the hard way: when one parent is fed up and done and tired, the other must take over. No questions asked, no comments made, no extra bullsh&& given. They can tag back in when they're calm, but the other parent must drop what they're doing and jump in the pool. That's not a cancer-baby thing, but it's become exacerbating and exaggerated since The Boy started his treatments. I think that's one of the reasons why The Boy has such an even temperament: he's never around an angry or upset parent for very long at all. There have been plenty of nights when he's been passed back and forth like a joint; and, certainly, plenty of nights (like last night) when the toddler-bed experiment would only last until 3AM before he's back sleeping with us. But, we're determined that we are going to be even-tempered around him.

It helps that I'm not afraid of rolling up my sleeves and picking up the baby, and I'm not worried about being elbow-deep in poopy. (Is it "poopy" or "poopie"? Weird.) Many fathers are, and many more than that are really, really not in touch with their baby's moods, needs and quirks. I pick up on what The Boy is feeling pretty quickly and can adjust relatively easily.

Going in for counts today, because chemo starts tomorrow. Three days of chemo, so hopefully we're home by halftime on Sunday. Then, the scans before the next round of whatever - radiation? chemo? Both?

Wednesday, January 28, 2009

Snow Day, Snow Day!

Ahhh, Young Padawan... you are learning.

That's directed to my wife, who just said, "I didn't used to want to take a nap. But, now [that I'm home full-time with The Boy] I just won't fight the power." Join the Dark Side, baby. Looooooove the afternoon nap. Caress it... it's the best part of the day.

Today was a snow day. Interestingly enough, the telephone first rang at about 3AM from my wife's old job's autodialer. I got my phone-chain call at 5:30AM, and my district's autodialer got me at 7AM. Still managed to get everyone back to sleep until 8:30.

The Boy was delighted to see me when he woke up. He bounced between my wife and myself in bed, just jumping back and forth until he got hungry enough to yell at us. We got breakfast together, and I went outside to shovel snow. The Boy and The Wife came outside for a little while and played in the snow until it started raining. I finished up shoveling and came back inside.

Afterwards, we dealt with our iPod problem. Weltman, the company that put it our new furnace, had swiped one of our iPods. I guess the workers decided that it was a nice tip or something. Of course, we didn't see the workers take it, but considering that I'm really, really anal retentive about my electronics, and it disappeared the day that they were installing the furnace.... well, that is circumstantial evidence that is acceptable to me.

Today was a wonderful day indealing with them. They've done a wonderful job making me feel like I'm the thief, not them, including our person telling me that they had done nothing wrong because "we background check all of our people!" Apparently, the background check missed something. "No, we didn't."

So, please remember that - "Weltman Plumping." They did wonderful work - the furnace is great and works wonderfully. They just swiped my iPod.

Anyway. We spoke with a couple of detectives from town about the iPod, who said that they were going to interview the workers. Hope so.

We also paid for the new garage doors and windows today. We're very happy about their work - Essex Door Company. Quick work, and big differences were made. This was a lot of work that got done on the house in the last couple of weeks. But, considering that we're going to be in the house more each week than we used to be, and considering that we're not going on vacation for a couple of years, it's fine.

We had lunch then, and we all settled down for a nap that last three hours (for him) and two hours (for us). When I'm done with this, and we're done with Scrubs, we're going to the mall to get a new iPod. New iPod Touch (2nd generation 32GB) or iPod Classic (120 GB)? Don't know yet. Whichever their rotten insurance will pay for.

Monday, January 26, 2009


Over the last two days, we've had two helpers come by to the house to lend a hand. The first was a volunteer from the Chai lifeline who came by on Sunday and played with The Boy. The general objective is to have someone who can come to the house once or twice a month and let The Wife and I do whatever we need to do: housework, shopping, grab a cup of coffee, whatever. The second was a lady from our temple who spent a couple of hours at the house while The Wife took The Boy for counts; we had some workers at the house, putting in some new windows in The Boys room.

I still feel a little bad about accepting people's help like that. It's weird, because the last few weeks have been really, really great - no unexpected illnesses, no bad days, just lots of fun, games, smiles and snuggles. Because things have been going so well, I almost don't remember what it's like to have everything fall apart around me (see: Thanksgiving). With luck, it'll be a LONG time before things get that bad. I guess it is good that we're getting a few new helpers lined up for the next Bad Time, but it still makes me feel somewhat awkward.

I had one of THOSE conversations at school last week. I'm a tad egotistical, so my assumption is that, since I "came out" about The Boy's cancer, everyone at the school has figured it out. I was chatting with the nurse about The Boy and I started talking about his treatment, when I realized that she had no idea what I was talking about. That took a nice five minute conversation and turned it into a fifteen minute conversation. Sigh.

Today after school, one of the other teachers (who also didn't know) asked about my "I'm a member of Team [The Boy]" button. To save the conversation, I just told her that The Boy was having some problems that we're working through, which is why the buttons were made. Tough thing, because it's a delicate balance between answering enough so as not to appear standoffish and answering enough to start a fifteen minute conversation about how my life sucks. Where's the line? I'm not sure.

Things I never thought to consider in my pre-cancer life: accepting volunteer help. Accepting gifts from different people, including many that I don't really know. Thinking about different stories to tell people so they don't feel awkward or full of pity or whatever.

Daddy's Boy

As I predicted, the pendulum has swung the other way. The Boy has been a Daddy's Boy since the weekend started. He's swung back from being a Momma's Boy - although he still goes to her for copious hugs and cuddles, of course. But, he's always seeking me out when we're at home, yells for me when I'm not in the room, and always wants to see and to touch whatever I'm doing.

I love it.

There is nothing about a "Daddy's Boy" that I dislike. I love that he wants to play games with me. I love that he wants to play trains with me. I love that he wants to crawl places with me, and I love that, when I carry him around, he imperiously orders me to go in the direction he wants. "Daddy be a horsey," indeed.

Today, The Wife stopped by school to drop my cel phone off, which I - ever so intelligently - left at home this morning. He was quite sad, apparently, when I kissed him goodbye and they left for the Valerie Fund Center. He made his feelings known to any and to all who were nearby that he wanted Daddy. While I don't wish a cranky baby on my wife, I think that it's awesome that I'm a favorite of his.

(Sounds silly, doesn't it? I wasn't worried, really; it's just nice.)

Thanks to everyone for clicking on the "Follow This Blog" tab on the left. It's kind of cool. It turns out that you do need a google account, but it doesn't cost anything to register, so keep them followers coming!

His weight today was 24 pounds, 9 ounces. He's a Fatty McFatfat, which is awesome. He's got that chubby back in his cheeks, and he's working on that double chin and chubby little belly.

All right. Got to go.

Saturday, January 24, 2009

Follow me!

When you can, please click the "Follow this blog" link on the left side of the screen. I'm curious about how many people are actually reading this thing on a regular basis. I'm not entirely sure if you need a Google account or not, but click on it and see what happens. Thanks!

Relatively boring day today. He had a good night last night - woke up twice, but both were the "quick-hug-then-tuck-me-back-in" wakeups that result in a quick back-to-sleep. He woke at 5AM, but was calm and snuggly until about 8:00, when we were up for good. We had breakfast, then snuggled and played until we left for lunch with a student of mine. When we got home, we watched last week's episode of House, then I did some reading while we played on the bed.

Cuteness: when I give him some Trader Joe's "Cats Cookies," he starts feeding them to me one at a time.

Man, I just got nothing tonight. I've got a little cold than I'll be over by Monday or Tuesday. I'm making good headway on my math schoolwork, I think. Time for bed.

Wednesday, January 21, 2009

Back to our regularly scheduled program...

Here is how the afternoons have been going: I walk in the door, and The Boy is waiting for me at the top of the stairs. He smiles and waves and palya as I take my shoes off and Purell my hands, then he moves to the side as I open the gate. I take my jacket off and give copious kisses and hugs to my family as I do the jacket thing.

I say to him, "Where do you want to go?" he points emphatically down the hall. At the end of the hall, I ask again, and he points at the bed in our room, usually with some sort of vocalization involved. I take him inside and, with a dramtic wind-up and countdown, toss him onto the bed and Babyquake him. He crawls away and gets the Tivo remote and emphatically puts it in my hand and points at the television until I turn it on. He then sticks his thumb in his mouth and rests on my shoulder.

My thought process always goes like this: I'll wait until he's asleep, then I'll go do work.


I'm out a short while later. Mommy joins us and has the same thing happen to her.

Best. Afternoon. Ever.

Warning: Political Post

I do my very best to avoid discussing Important, Controoversial Things on this blog, like politics, religion and baseball, because I don't want to get into arguments with anybody. The important thing in my life, and the important thing behind this blog, is The Boy; getting The Boy healthy is the number one priority in my life, and things like politics are distant irritants in comparison. But, yesterday was an interesting day.

I think yesterday was a "Flash" moment. I think and hope that it'll be one of Those Days, that you'll remember where you were and what you were doing when he was sworn into office. I mean, think about it - even a year ago, if somebody told you that a black man would be elected president, what would your response be?

Interesting thought: if Obama wins a second terms, then The Boy will grow up only knowing a black man as president. Wouldn't it be nice if he thought we were all weird for thinking it's a big deal that a black man / woman / Muslim / Jew was elected president?

Most often, our "Flash" moments are negative: JFK gets assassinated. John Lennon gets shot. The space shuttle Challenger explodes. War is declared in the Middle East during the Super Bowl in 1991. Students take an assault rifle into the school in Columbine. The World Trade Center gets destroyed by terrorists. Finding a lump in your infant son's belly, and being told that he had cancer. Being told that he was embarking on a two-year chemo treatment.

Wouldn't it be nice, if this turns out to be a "Flash" moment that does NOT involve death and destruction? I have a few: a couple of kisses with different girlfriends. Meeting the woman that would eventually become my wife. A couple of moments at my wedding that, with due respect, I'm not going to share with you. Watching my son being born.

I admit to having voted for President Obama. I consider myself a Republican, but an "old-fashioned" conservative. I believe the government's job is common defense (the armed forces) and to take care of those that cannot take care of themselves. Other than that, I do not want the government involved with my life or others' lives. I feel that my party has betrayed that over the last fifteen years or so and become a party that wants a bigger and more expensive government that is more involved in everybody's life. Plus, Sarah Palin scares the crap out of me - I know that our current society seems to reward ignorance, but somebody who has that little respect for science and for education has no business being involved with national office. (Click the link to find one example. She's ignorant and proud of it.)

With luck, the intelligent wing of the Republican party will return to that more classic conservative value, self-reliance and private charity and private responsibility. That's what I believe.

But, I digress.

Best of luck to the incoming administration. You'll need it. President Bush screwed things up to a fare-thee-well, and it's likely going to take years and years to undo his mess. (Interesting that he has a lower approval rating than Nixon, post-Watergate, did.)

Politics over. Back to baby.

Tuesday, January 20, 2009

It feels weird...

Yesterday was just - well - boring. We didn't have enough stuff with us to entertain The Boy, The Wife and me for the ten hours that we were at the Valerie Fund Center. Good thing his numbers were low enough that we spent a good chunk of the day napping. Still, it was boring, so we were all a little keyed up and ready to be HOME when we got there.

Prefacing the rest of the story, it feels GOOD to be dealing with "normal parent" problems for a little while, even though I only got about five hours' worth of sleep in the seven hours since I went to bed.

The Wife put him down around 8 or 8:30, and he pitched an absolute FIT. It wasn't the sort of the thing that two parents could help - matter of fact, this was one of those things that the other parent needs to run and hide for a while. I went downstairs, tried for my 3 miles and fell a quarter mile short. Sigh. By the time I finished (35 minutes later), he was asleep and The Wife was on the computer. We cuddled up and watched some television (the penultimate episode of House before the new one) and lights-out a little before 11. 12:45, he was awake. The Wife comforted him for a half-hour, and then had to go to the bathroom - which caused him to pitch another major fit. I took him until about 1:45, when I handed him back to The Wife. He was awake again at 2:30 and again at 3:15.

The 2:30 wakeup was cute, though - he crawled into the bedroom and said, "Up! Up! Up!" I took him back at 2:30, and he was asleep in five minute. The Wife took care of the other one. We're a team, you know - when one gets tired, they tag the other one into the ring. I won't say which one is Hawk and which one is Animal, but I think we're almost as good of a team.

No wakeup at 4AM, though, thankfully. When he woke at 5:40 and pitched a minor fit, I picked him up and took him into bed with us because he's cute. Let's hope tonight is better.

Watching the swearing-in at school today. Should be interesting.

Monday, January 19, 2009

Boring, sort of.

You know it's been a long time since I've blogged when my wife ( put in about ten entries since my last one.

With one exception, this past five days have been blissfully, wonderfully boring. Nothing remotely exciting happening on The Boy's front, or in my / our lives. This is a welcome change, and I've been mentally on vacation since - well, Thursday night.

The exception: we got our new furnace put in on Thursday. It went very smoothly, and the new machine works wonderfully. The only down bit? My white iPod - the one that we use when The Boy is in the hospital - is missing from its spot next to the computer since Thursday. I'm positive I brought it home from the hospital, because I updated it on Sunday night. I'm also equally positive that I didn't take it anywhere, because that's what I use the iPod Touch for - all of my movies, tv shows, podcasts and currently interesting music are on the Touch. I've ripped apart my bedroom, the computer room, the living room & dining room and the cars looking for it. My fondest hope is that one of the workers moved it when they were cleaning the vents and they'll tell me where it is; but, when the president of the company doesn't return your call, one starts to wonder. I'm going to wait until I speak with him (IF I speak with him) before I start a smear campaign, but if it isn't resolved to my satisfaction, then the entire state of New Jersey is going to hear about the workers that stole the iPod of a baby in chemotherapy.

Other than that, it's been boring. The Boy has been healthy, other than needing blood today - necessitating a ten hour day at the Valerie Fund Center, because we had to do a CBC, a type-and-cross and then get platelets (1.5 hours) and red blood cells (2 hours). The Wife and I have been healthy and getting reasonable sleep. Sister C & Brother C from Maryland came to visit this weekend, which was nice, even though Brother C ate something that violently disagreed with him. (We hope. That's all we need is another stomach virus.)

(Interesting note: this year, I've missed one day, total, that I've been sick. In my career, I've averaged at least one per month. I'm guessing that it's the extra naps that The Boy tackles me, holds me down and forces me to take.)

The Boy has done a few new-ish and cute things. Saturday, he took three lurching, diving steps towards me, unassisted. He's become more and more communicative, including asking for "up, up" and then pointing to let me know where he wants to go - including, cutely, letting me know when he wants to watch TV and take a nap with me. (He's okay with napping, as long as I'm doing it as well.) He understands "high chair" and "hungry," including crawling from the bedroom to the dining room and standing up and pulling on his highchair straps when we say, "You want breakfast?" to him. Yesterday, he pulled down an apple cereal bar when we were too slow with dinner and ate the entire thing.

Okay. the caffeine from dinner & the Mountain Dew I drank is starting to kick in. Tonight, I'm going to try to run three miles - first time I've been above two since... um... well, a long time. Certainly since I hurt my knee in Denver at the barbershop convention (whacking it into a fire hydrant).

Wednesday, January 14, 2009

Sneaky little imp...

...tried to fall asleep without being in his bed. But, I'm onto him!

Mommy left at around 6:45 to go to her new orchestra rehearsal, leaving me with The Boy at home. Sausage party!

Short night for him. We finished dinner, cleaned up, had a snack, played for a bit, and he flipped out like he was bitten. Not sure what it was - just freaked out. He wouldn't listen to stories, listen to music or play. He just cried. Eventually, I gave up and brought him to the Playstation to play Pixeljunk Monsters, which is a very cute game, visually, with the most soothing music imaginable. He almost fell asleep.

I caught him, though. And we moved into his bed. He cried out in protest, but he's completely out in just the time it took to type this - and I'm a quick typist.

Silly little imp-y man.

Night #2: Not as much success, but decent

I went home for lunch yesterday, which was really nice. The Boy was already in his high chair eating, and I quickly demolished a sandwish and knish. Afterwards, I got a solid ten minutes of playing-with-the-baby time, which was a real treat. When I got home from school that afternoon, I found out that he hadn't napped except in the car, which doesn't really count.

That, I can fix. I'm good at the whole nap thing.

So, the three of us lay down together and napped. I was up forty-five minutes later to leave for chorus rehearsal. The wife was up a little while later, The Boy somewhat later.

Fast forward to 11PM, when I arrived home. I did the usual bedtime stuff for me, and climbed into bed and fell asleep quite quickly. At around 2, he woke up, crawled into the hallway and started to cry. I got up and grabbed him. The interesting thing? He hugged me like he was afraid that I would disappear forever! I mean, this was a whole body hug. It told me that he was really scared and agitated. That isn't a state that I want my high-blood-pressure cancer-patient son to experience.

So, instead of doing the "Ferberize" thing and put him in bed and let him cry, I hugged him and rocked him for a while, until I felt his body relax and calm down. Then I put him in his bed. At that point, he was awake and very awake, so after a half hour I traded places with my wife. True to form, he was asleep five minutes later. He woke up again at 3:45, and she put him back to bed - or maybe I did. I'm not sure. I think I went in there again at some point, because I had my iPod and I checked a couple of websites at around 4AM. Memory is a bit hazy.

At 5:45, he was up again, and we took him into bed with us. That's fine with me - for non-chemo days, if he stays in his own bed from 8 or 9PM or whatever his bedtime winds up being, until 5:30AM or so, I consider that a success.

The only issue is that we need another baby gate, to put across the hallway. He made another mad dash towards the living room at 5:30, necessitating The Wife sprinting after him. That kid is going to wind up breaking stuff if we're not careful... and, likely, he'll wind up braking stuff even if we ARE careful!!! He is wily, impish, focused and remarkably patient. Those are wonderful things, until he decides that he wants to do something we would prefer him to avoid.

Ah... NORMAL baby problems. This whole sleep thing, this whole imp-y behavior thing, it's wonderful to take care of. I can handle wakeful babies and mischevious babies MUCH better than surgery-baby, chemo-baby or cancer-baby.

Tuesday, January 13, 2009

Night one: success!

So, The Boy stayed in his bed, in his room, until about 5:45 this morning. I'm calling this an unqualified success in the "Toddler Bed Experiment."

The Wife put him down in his bed at around 8 o'clock, and he quickly fell asleep. We're starting that whole "bedtime routine" thing - you know, brush teeth, read a couple of stories, sing a song or three, play some lullabyes on the iPod (more specifically, put the lullabye playlist on permanent repeat), and say goodnight. He quickly fell asleep for her by about 8:15, and she went downstairs to practice. I was already downstairs exercising.

At around 9:15, he woke up again, and she helped him back to sleep. At 9:30, it was my turn; at 10:00, I asked The Wife to sit with him so I could finish school reading. He was asleep by 10:10. (She's kind of amazing, like that.)

When I was sitting there with him, it was very cute. When I entered the room, the poor guy had crawled out of bed and was sitting on the floor, crying. I picked him up and hugged him, then - after I got my sugar - put him down on his bed. He started flailing a bit, so I sat next to him and held his hand. He then spent the next 20 minutes in that area in between sleep and wakefulness - that area that has his eyes 90% closed, but instantly aware when an adult stands up and leaves. At one point, entertainingly enough, his thumb didn't quite make it into his mouth, instead hovering in the air about six inches in front of his face!

The Wife got up around one o'clock to address some crying - turns out that he had half-tried to crawl out of bed, but only his feet made it out and he was a little stuck. Other than that, the night was uneventful.

We need to get a pressure gate, so that we can block off the rest of the hallway. I know that I woke up every hour or so, half-expecting to hear him throwing DVDs down the front stairs or something similar (like himself). If The Wife can't get it during the school day, then I'll head out on my way to Dapper Dans tonight.

The important thing is that now we know that he CAN sleep in his own bed. I don't expect every night to be uneventful - far from it. But, now that we know it can be done, we will do it every night.

But, I don't want to lose my naps. Those snuggles with the baby are really, really special to me. I love those hugs. I love when he pounces on me and throws himself across my chest to get comfortable. I love feeling his jaw work against my shoulder as he sucks his thumb. I love the smell of baby, and I love the way baby skin feels, and I love the way that tiny hands and tiny shoulders and tiny legs feel.

It isn't all or nothing, is it?

Monday, January 12, 2009

Assorted cuteness...

So, when I got home today, The Boy dashed up (well, crawled quickly) to the gate, stood and started picking at the screws holding the gate together. The Wife said that he took a screwdriver from the table near the top of the stairs (where I put it after assembling The Boy's train table on Saturday) and fit it inside the screws holding the gate together. Thanks go to Grandpa, for buying him a present that taught him that the screwdriver can be used on screws... it's only a matter of time before I come home from school and find the Playstation 3 disassembled into its components.

Yesterday, I was sitting in the chair, and he hid behind the chair. He stuck his head out, said, "Hi!", then ducked back behind the chair. Repeat four times. It was very funny!

This afternoon, we were sitting in bed, and I was lying on my stomach. He laid across my back to watch Sesame Street, but then climbed up and started bouncing. We bounced up and down a bit, with a look of pure elation and excitement on his face. Very cute. He got mad at me when we stopped and went to go eat dinner.

Easy weekend, tough night

This weekend's treats, etoposide and carboplatin, were given without any fanfare or extraordinary events. Friday morning admission, Sunday evening release, and we were home by 7:00 last night. No worries, no problems, save for a little bit of nausea and vomiting yesterday, which is going to happen with this particular form of chemotherapy. Whatever.

That doesn't mean it was easy, just easier than, say, our first inpatient chemo on Thanksgiving that wound up with me in the emergency room. This time around, it involved scrubbing down his toys and his playmat once or twice per day and not allowing The Boy to play off of the playmat. It involved asking - and demanding - that any person who entered the room wash their hands before touching The Boy, and that any visitor take their shoes off or put on shoe covers. It was constant attention and vigilance. Whatever. He's worth it.

Last night, we came into an interesting quandry. It is actually dangerous for The Boy to sleep with The Wife when he is immediately post-chemo. Most of that stuff will cross the placental barrier and affect the fetus. So, by prior consent, last night was the time to introduce The Boy to the concept of sleeping in his own bed.

...except for the fact that we had to change his diapers (and wake him up) every two hours. Which meant that the hour that Grandma and Mommy spent getting him calmed down and asleep in his bed had to be repeated at midnight and again at 2. D'oh!

At 2, it took an exceptional time to get him back to sleep. Not surprising - I'd be pretty cheesed off at being woken every other hour for a diaper change, also! The Wife finally got sick of it and asked Grandma to take The Boy, which she did. Remembering back to June - consider that we were reintroducing him to the crib approximately five days before his diagnosis - it took about five hours, total, for him to get through the night. It was about an hour and a half at 8 or 9, another hour at 10, another hour at 12, etc. The difference? It was a weekend, we weren't tired from having spent the weekend at the hospital, and I was the one that was responsible for the baby while my wife was doing work-things. Plus, he wasn't as loud at 10 months as he is at 16.

(The kid's got a set of pipes, let me tell you. He doesn't seem to have his father's breathing issues, and he's got his mother's vocal power AND my temper.)

Don't get me wrong - I'm not taking credit for the ease of the hospital stay. I didn't get there until 6 on Friday, and I took The Wife home at 9. On Saturday, we got there at 10 and were chased home by the weather at 4:30 or so. On Sunday, I arrived at the hospital at 5:30 and took everyone home at 6:30. So, this was entirely Grandma and Mommy.

What was I doing? A little of this, a little of that. On Friday, I napped after work and worked on the computer for a bit before leaving. On Saturday, we slept in (first time in a couple weeks for me), then were snowed out of the hospital. On Sunday, I had mass in the morning, and I did lots of housework so that I could avoid watching the stupid Giants get whupped by the Eagles. I wasn't exactly sitting home and picking my nose, but I wasn't sitting in the hospital either.

This week's schedule: dinner with a good friend tonight, visits by brother- and sister-in-law this weekend, counts on Friday.

Saturday, January 10, 2009

IHOP for Breakfast

Last night, we left the hospital around 8:30-ish. The Boy's chemo started at noon and finished at 7 - the first medication, carboplatin, is administered via IV infusion over a six hour time period. The second medication, etoposide, takes an hour, with the nurse taking a blood pressure reading every fifteen minutes to monitor effects.

Well, she's supposed to take it then. Considering that the etoposide was administered right at shift change time - 6PM - they missed two of the BP checks. The Wife and The Boy were admitted at 8AM, and it still took until noon to start the chemo. Whatever. The only real alternative is to check in on Thursday night, and that's not going to happen.

After the etoposide was done, they super-hydrate him for an hour to flush the medication out of his system. Normally, he gets 40 mL per hour of fluids - that's considered "maintenance" levels. It'll go up to 100 mL/hr or 120 mL/hr during the flushing part of the treatment. When that was done, we went home.

I exercised, The Wife studied music that she's going to record for me. Afterwards, we watched the first nine webisodes of Battlestar Galactica, entitled "The Face of the Enemy." Haunting - really great writing and acting. We talked for another hour or so and fell asleep. This morning, we went to IHOP for breakfast and arrived here at the hospital at around quarter after ten.

Grandma and The Boy were napping, because he was awake at 5AM and had a poop the size of a battleship.

The interesting thing? The Boy looks FAT this morning! Not swollen with fluids, like he occasionally gets; I mean, actually, authentically baby-style FAT! It's really nice to see, considering that he's been eating like a little piggy for the last month or so.

I call him "Fatty McFatfat" when he's all chubby like that. He thinks it's funny.

Right now, he's sitting on his playmat with Mommy, playing and watching Baby Songs. He's very cute, particularly with those chubby cheeks and expressive face.

Friday, January 9, 2009

On my way to school...

Chemo Day today. The Boy and The Wife are meeting my father at the hospital within the next hour. The hope is that if they hit the hospital early enough, we can actually get chemo started at a reasonable hour this time. Last time, they arrived at 9AM, and the chemo actually got started at 5:30PM. This time, we hope it'll be slightly more efficient, particularly since one of the chemo drugs is administered via IV drip for six hours.

The first time, his chemo wasn't administered until around 11:30PM, which meant a WAAAAY late night for whomever was staying with him. Not good. We'd prefer to avoid the whole 1 or 2AM chemo finish-up. It's just easier.

Grandma managed to get the nurses to come in and change The Boy during Diaper Hell hours. I've never been quite so lucky, but I'm also a little more anal retentive than she is. More to the point, I'd wake up anyway when they changed him, and I'd wake myself up five minutes before his time, so I might as well do it myself.

Not sure which night I'm going to stay over this time. Usually, it'd be Saturday night, with The Wife bringing breakfast for me on the way to church. This time? Not so sure, thanks to 4-6 inches of snow being delivered Saturday night. I don't think I want The Wife driving in that kind of weather, and I don't think I want her and her mother stuck in the house with that much snow (...and to have to shovel the snow after it's been sitting and icing over for ten hours or so, because Preggo and her mom probably aren't going to grab a shovel and start making snow fly).

There's a chance that he'll be coming home Sunday night. I'll believe it when I see it.

Gotta go - helping with medicine. Wish us luck - the carboplatin is the stuff that can cause hearing damage.

Wednesday, January 7, 2009

An interesting day, kind of.

Today's one of those days. My to-do list started the day at 11 items (I don't put normal, everyday stuff on the list - just the extraordinary stuff), which is okay. After my first prep period, my to-do list dropped to 7; at the end of the day, it was up to 16. Sigh. Three steps forward, seven steps back. Blech.

My former student, Goofy, picked me up at home and took me to the hospital, where The Wife was waiting with The Boy for his procedure today. He would be knocked out, have a camera inserted into his thingie until they found the stent, then grabbed it and dragged it out. Ick. The Wife and Goofy and I sat until he was wheeled in, then waited for the 20-minute procedure to finish. He was awake before we got back to the recovery room, and we were home forty-five minutes later.

I didn't work out tonight because I'm just flat-out exhausted. I did start up the new computer and started to uninstall some of the crappier programs that came with it. We're watching the new episodes of Scrubs, and I'm not quite so impressed.

Anyway. Time to shave, shower & go to bed. Point is, The Boy is fine, thanks.

Tuesday, January 6, 2009

Good start to the week...

I've been really energized so far this week, which is weird, considering that I'm taking in less caffeine in school than I did out of school. I chalk it up to the new diet finally kicking in AND the fact that I'm finally starting to catch up to the pace of my new life. My tasks are not out of control anymore, thanks in part to a "To-Do" list application on my iPod Touch which is making sure that less things fall through the cracks. For instance, my housework is actually doing well right now, thanks in LARGE part to 1) having the extra time on break to catch up, and 2) my wife taking a HUGE part of it on her shoulders. I've gotten home at 4 on both days, which is also a big deal - not having to jet out of school right away means I can get stuff done that, before, was being left alone.

She's doing well during her first two days off from school. Not that they've been "days off," per se; she's spent most of the days in the hospital, getting blood counts (Monday) and an ultrasound (Tuesday). That eats up lots of the day and makes 4 o'clock come REALLY quickly. I know that I didn't really feel like I was HOME HOME HOME hOME HOME until about the third week; the first couple weeks (saving for the 3AM baby rockings and marching band rehearsals) felt like vacation. The biggest differences between the two situations are:

1) itty bitty bitty infant vs. toddler, meaning more time spent holding and rocking and singing for me vs. more time spent chasing and talking and feeding
2) NO TUMORS (yet) means WAY less time back and forth and in the hospital for me
3) my lessons, marching band and choruses meant that I was still working six hours per day
4) my math degree stuff kept me busy outside of that, means that she has eight hours per day of less HER stuff than I did.

It's tough to make your life all about another person - in this case, a 16-month old that is barely communicative. Don't get me wrong - he communicates a LOT more than he did even a week ago. "Ip Ip Ip" means chips (or cookies, I think), and he can say "yes" and "no" when he wants. Today at lunch, we held up different items for him to choose from, and he said "no" "no" "yesh" to select what he wanted. And, when I carry him, if I ask, he'll point to exactly where he wants to go. (Interestingly enough, it goes from mezuza to mezuza - the Jewish luck / fortune / faith things that hang outside the two bedrooms and the kitchen. They're pretty, and he likes the way they look and that he can touch stuff that is so far above his head.) He also waves bye bye on command and recognizes that someone putting a jacket on means bye-bye is coming. He said "bye bye" to me tonight, also.

But, I digress.

He's not exactly the wit and charm of the professional dinner companion, is what I'm trying to say.

All in all, she has a MUCH harder job that I did - compound that with being pregnant, and triple that when the new baby comes. I don't necessarily envy her, but I know that I also wouldn't be sad if our employment situations were to suddenly reverse itself - G-d prevent that, as I make more money and have the ideal commute AND have great kids. I hope and pray that she is contented and fulfilled by it, as I was by my year out of the classroom.

Tomorrow is the outpatient surgery to get the stent removed from the kidney, and - with that, with luck - the last stench of our involvement with the Children's Hospital of Philadelphia is removed. (Well, that, and the bulging spot in the middle of his chest that is allegedly a "stich" but is more likely a leftover knot of something that will need to be removed, lest it look like he's growing a second penis out of the center of his chest. We'll take care of that soon as well.) I'm meeting one of my former students (nicknamed "Goofy") for coffee after work, and I think I'll get him to drive me to the hospital to catch up with my wife and son. Tough job for her tomorrow - he's supposed to be no food from 11AM until the surgery at 5.

That sucks, considering that the kid has been eating constantly this week - like, gained a half-pound eating. I mean, The Boy'll have a big dinner, and - an hour later - be yanking at the straps of his high chair for a snack and a sippy of juice. He's got a hollow leg to store the food, that's what I think... or, his stomach is expanding where his kidney used to be. (Too soon to joke about?) No fun to try to keep him away from food. My unsolicited advice? Get him the heck out of the house, particularly since his counts are good. At 2 o'clock, take him to the library for a half hour to run around, stop by the comic book store to say hi, walk around Border's to look at things, go to the nearby mall to do a lap or two, ANYTHING to keep him away from food. He can have clear liquids - which includes fruit ice and white grape juice, fortunately - until 3, so she can mitigate some of it.

But, not an easy job. He's inherited my one-track obsessive focus, which means he's going to be VERY difficult to distract.

Sunday, January 4, 2009

Like father, like son.

Last night, we had a mild temperature scare. After The Boy had spent most of the day snuggling and sleeping on us, he was quite grumpy through dinner and afterwards. He was clingy and whiny, crying when he was put down and not allowed to play with the normal stuff he's not allowed to play with, that sort of thing. Completely undistractable, focused on one thing to the exclusion of all else, much like his father.

So, we moved him from the living room into the bedroom in the hope that it would calm him down. Wrong move, as he threw a major league hissy fit. (Again, much like which parent?) Considering the fact that his nose was runny (due to the crying, we hoped), and considering his behavior, we were afraid that he had caught something from somewhere. Another late night at the hospital was staring us in the face.

We took his temperature and it was 99.3, right at the border of "Call the Doctor Immediately." Mind you, this was after approximately an hour of carrying on. I gave them some Daddy-less Mommy-snuggles and left the room, which is sometimes necessary - he really needed alone time with Mommy, as Daddy was agitating him by Daddy's mere presence. This happens in the reverse often enough that it doesn't surprise us any more. I came back in a little while later, and he was contentedly sucking his thumb and resting on Mommy's belly. We took his temperature a half hour after the first reading (or so), and it was in the low 98's.

Moral of the story? He had worked himself up into such a frenzy that... wait for it... it actually (temporarily) made him physically ill. Or, rather, showing the symptoms of a potential physical illness. Sound familiar?

You guessed it. One of his parents does that on a regular basis. One of his parents doesn't. I'll give you a couple of hints: #1: it's the parent that has gone through a half-dozen jobs in his teaching career because of said tendency to work himself into a righteous fury; #2: it's the parent that is far more moody and depressive; #3: it's the parent that is NOT pregnant.

ZOMG, I hope that he learns to rein it in earlier than I learned. (...or rather, am learning.) It's great to be passionate; it's NOT great when you become so passionate about something that the flame burns those around you. Maybe my therapy sessions from earlier in life can help him... or they might just make matters worse. I don't know.

I wish my mom was around. I tend to get that passion from her, with a healthy dose of my father's temper thrown in. She's be able to help. Sigh.

Saturday, January 3, 2009

Chatting up a storm!

The Boy actually said "Bye-bye" today, to Aunt L & Uncle B, who came by to visit and play Buzz TV, a quiz-show game for the Playstation 3. We were saying goodbye to them, and we heard a high-pitched voice say (with a wave), "Bye-bye!"

It was very exciting.

Granted, just like his "I love you," it'll probably be two months before we hear it again. But, still.

Avengers Assemble!

Did you know that there was a British TV show called "The Avengers" before the comic book hit big? I didn't either, until a few years ago. I watched an episode or two at that point, and I was unimpressed. I know, I know; one needs to examine television with an eye OF the times, instead of the modern eye. However, I've gotten used to good writing, interesting characterization and non-stereotypical gender roles. As in, I don't want my women existing for the sole purpose of being saved. It's not "The Prisoner," that's for sure.

But, I digress.

Today was an interesting day, in the full Chinese meaning. It started last night, when The Boy, The Wife and I were asleep before 10:30PM - a true rarity in this house. Usually, at least one of us, if not all three, are up until midnight or so (as I am now). We slept until 8:30 as well, making it a night of immense and long sleeps.

The Boy is funny when he sleeps. Occasionally, when he tosses and turns himself into an odd shape, he'll crinkle his face into the "maddest baby in the entire world" face, scream one loud, short bark of something, then straighten himself out and fall right back asleep. Musical Daddy, being a light sleeper of the first order, wakes up, checks the baby over to make sure nothing is wrong, glares balefully at the little one, and falls back asleep.

The Wife, being a sound sleeper of nigh-historical proportions, doesn't stir. This is genetic, I'm sure; she and her brother take after their father. The brother-in-law, incidentally, is famous for two sleeps: 1) rolling off of the top bunk in childhood and remaining asleep after the 4-foot drop onto the hardwood, and 2) remaining asleep in the basement of his frat house while a group of men came in, uninstalled the hot water heater, dragged it out of the room and up the stairs, dragged in the new one, installed it, and left. Truly impressive, and an Olympian feat.

But, I digress.

He had a couple little yelps like that last night, most notably when Grandma & Grandpa left around 7:15 to go have breakfast with my father. We all arose and had breakfast together, sort of; I waited until my wife was done eating cereal before I joined them at the table, not wanting to start a fight with her so early in the morning. (You know how people get really irritated by the sound of others slurping soup? That's me. I'm very sensitive and irritable before I eat in the morning, but I'm not stupid enough to start a fight with an unbeatable foe.)

After breakfast, I did the ironing. It was 7 shirts - 6 of mine, one of my wife's. I like to do the ironing, as I find it meditative and relaxing. Weird, no? Plus, I find that it helps me to get through watching a sporting event. I was ironing during the Game 5 of the 2001 ALDS against the A's, and that's when Derek Jeter made The Play; so, it MUST mean that my ironing is lucky for my teams.

As I ironed, I got thirsty and went to fill my water bottle. Hmmm... no water pressure in the bathroom. No water pressure in the kitchen. Oh, &@#$. Sure enough, an under-insulated pipe in the garage split down the middle and was spewing water everywhere. Long story short, I finally found the water-shutoff (no way to shut off just that part, only the entire system), waited for my father, made two trips to Home Debit and finally ran into a local plumber who stopped by and fixed it, thanks to Grandpa for picking up the check there.

At the SAME time, the HVAC guy came by so that we could sign the papers to get a new furnace & AC unit put in the house. Not that ours died, but I'd really like a furnace that, in general, blew cold air in the summer and warm air in the winter instead of the other way around.

At the SAME time, one of The Wife's friends stopped by, and I was juggling calls from two friends that I'm seeing on Saturday and from Western Governor's University, which wants me to start classes again.

And, to make matters more interesting, trying to give directions to a buddy who brought a few people down to help us clean up around the house. They didn't arrive until hours later, but still... it was AWESOME to have that help. They really did a wonderful thing for us - let The Wife play with The Boy, and I helped put things away, sterilze the eating areas, reorganize shelves and other things. My wife's family are wonderful people, but they hit the house like a Chaos Wave and tend to leave the house somewhat in disorder. They try, they really do; but the kitchen is usually an unholy mess and takes several days to finally get back in order.

But, I'm obsessive-compulsive and hate when the status is no longer quo. Disorganized shelves annoy me to no end.

So, they left, I exercised, The Boy napped. The Wife cooked and straightened. After dinner, we snuggled for a while and they fell asleep. I'm not asleep. I don't know why. Tomorrow's going to be busy, but in a good way (even though I just found out that a friend of mine is moving to the midwest permanently). Then, Sunday is a normal Sunday, and then... back to work, Sparky!

Except, I get to be the Sugar Daddy this time. That's it, woman... meet me at the front door with my robe, pipe and my newspaper. Barefoot, pregnant and in the kitchen! Grar! I am man, hear me roar!

(Ummm... I hope y'all know I'm kidding. I don't wear robes - prefer sweat pants, and I wouldn't change clothes at the door because I like hanging my work clothes up. I don't smoke a pipe - that whole asthma thing, you know. My newspaper is a morning paper. And, when The Wife is barefoot in the kitchen cooking dinner - and she is pregnant - I'm smart enough to only make that joke after she brings it up.)

Thursday, January 1, 2009

Not a big resolution guy.

I've never been the kind of guy that requires an arbitrarily-chosen date to start stuff. "I'll start working out on New Year's Day!" "I'll give up drinking for Lent!" "I'll start my diet the day after Labor Day!" Whatever. I'm not that patient, and if I'm going to start something, I want to start it NOW.

So, I don't have any resolutions.

Last year at this time, I was worrying about bouncy seats in the living room, three hours at a time of sleep, not having a job and helping my wife work through her job. The Boy was four months old.

Now? He's 16 months old, and I'm worrying about his blood counts. He's got a more extreme version of my hair cut - he doesn't have the goatee, or eyebrows, or eye lashes. He's been through two surgeries, with one more minor surgery (to remove the stent) left to go, for this time period. He's just about walking - certainly crawling and climbing - and he's just about talking - with some recognizable words mixed in with lots of babbling.

The Wife has now left her job, and I'm working instead. I'm going to start working on the end parts of my math degree, but I honestly thought that, at this point, I'd be finishing it up and looking for math jobs. In addition, I'm not teaching private lessons any more, but I'm still directing one chorus and singing with another - just for work, not necessarily for fun.

Sigh. What a difference a year makes.