Thursday, July 31, 2008

Chemo day - Week 4

Just the vincristine today, so we know (relatively speaking) what to expect. Lots of fatigue, some constipation and eventual hair loss are the side effects that we know are going to happen. Considering that he hasn't started losing the hair yet, we might still escape that one - but the oncologist has told us that the hair is pretty much a done deal.

It's a shame, because his hair is a foregone conclusion, anyway. I started losing mine at 18, and the men on my wife's side are mostly bald. It'd be a shame if he lost his hair before he had an opportunity to enjoy it.

But, I digress.

We were at chemo for a long time today. We hung out for a few minutes before the nurses weighed him, took his temperature and blood pressure (narrowing down on the bp medication after this week), then went back to the playroom. We hung out there for about 45 minutes, then went in for the doctor's exam, then the nurses came in and administered the chemo. Not too bad, considering that we were also spending time with my wife's aunt, who is in town to help us out. She's graciously volunteered to take The Boy to chemo once per month during the fall.

The doctor had some good hopeful news for us. He said that there's a chance - with this chemo regimen having been administered to a large number of Wilms Tumor patients - that the chemo will destroy the tumor without having another surgery! My sense is that this isn't a particularly high chance, but even a 20-80 chance is glad news, indeed. The CT scans are going to happen according to the original calendar, during week 8, which is right in the middle of my new school district's Band Camp. Not a big deal - a long hospital day, but no overnight stay required, thank G-d. I'll stay at band camp and my mother-in-law will spend the week helping my wife.

The summer program finished today. It's a really, really chill program with cool kids, so - while I'm glad to have my holiday start (I don't work during the first two weeks of August) - I'll miss those kids. I'm not going to have the ability to work up north much this year, so I won't see them much until next summer. I brought The Wife and The Boy with me to the program today, and The Boy was a big hit. He's so cute...

Lesson tonight, then we might go see a concert. We might go see a kids' musical tomorrow morning, and we might go see a concert tomorrow night. Depends on the boy. He napped from 1 until 3 earlier, and he fell asleep around 5:15 (it's 5:30). Should be fun, whether we go out or whether we stay home.

Wednesday, July 30, 2008

5 for 6 today...

Today, The Boy successfully used the potty five times out of the six opportunities. That's a pretty good ratio - I don't think my father has that kind of day anymore.

He also tried to eat mud that Band Guy tracked into my living room, but that's a different story. He gets his brains (using the potty) from my side of the family. He gets his "adventure" (eating mud, eating bugs) from my wife's side. Obviously.

And yes, I choose to disregard the fact that my genius, beautiful niece, who is the (other) apple of my eye and heart of my heart, used to eat bugs regularly when she was a baby. She was a preemie and didn't know any better. Besides, it was funny.

(If you haven't checked out Amazon's .mp3 downloading service yet, do it now. There's some great deals and about three hundred free tracks available. There's a bunch of foreign albums available for, like, 90 cents an album. It's pretty cool. My "unheard music" playlist - stuff with a playcount of "0" on my iPod - is back up over 200 because of Amazon's service. The free stuff, combined with $2 and $5 albums, has given me a John Lennon collection, Naxos Music early music special edition, Red Hot Chili Peppers greatest hits, Diana Krall's last album and the first two volumes of ESPN Jock Jams. To be fair, I bought the last two at a garage sale for a buck each.)

Okay. I'm done screwing around. Back to work.

Karma's a b----...

For those that know me & my personal history, this is immensely entertaining. The jerkballs actively deserve this, and I hope they sue their beady little eyes off.


ANN ARBOR, MI — Tomorrow, July 31st at 10:00AM EST, a New Jersey Federal Court will hear oral arguments in a legal challenge to a public school district’s policy totally banning Christmas music, including simple instrumentals without words, during year-end celebrations in its schools.

The Thomas More Law Center, a national public interest law firm based in Ann Arbor, Michigan filed the federal lawsuit on the grounds that the school district’s ban on religious music conveys a government-sponsored message of disapproval and hostility toward religion in violation of the Establishment Clause.

Richard Thompson, President and Chief Counsel of the Law Center, commented, “The New Jersey school district’s anti-religious policy is yet another example of the militant hostility that many public schools have towards Christians and Christmas.”

Robert Muise, the Thomas More Law Center attorney who will argue the case commented, “The Constitution prohibits school districts from adopting policies that disfavor religion. Contrary to popular myth, our Constitution does not require complete separation of church and state; it affirmatively mandates accommodation, not merely tolerance of all religions, and forbids hostility toward any. The school district’s policy is plainly unconstitutional.

The case was filed by the Law Center and the American Catholic Lawyers Association, on behalf of Michael Stratechuk, who sued on his own and on behalf of his two school-age children on the grounds that the policy deprives the Stratechuk children of the right to receive information and ideas, an inherent corollary of their First Amendment rights to freedom of speech and academic freedom.

On September 30, 2005, the district court dismissed the Law Center’s complaint, claiming that the Law Center failed to state a claim under the United States Constitution. The Law Center appealed the ruling to the U.S. Court of Appeals for the Third Circuit and the Circuit Court reversed the district court, vacating the lower court’s decision and remanding the case for further proceedings.

In its opinion, the Third Circuit held that “ecause a categorical ban on exclusively religious music, enacted with the express purpose of sending a message of disapproval of religion, appears to state a claim under the First Amendment . . . , we conclude that the complaint . . . survive[s the] motion to dismiss.” The Third Circuit also awarded the Law Center its costs for having to bring the appeal.

The New Jersey School District policy at issue in this case was previously featured in a book, The War On Christmas, by Fox News anchor, John Gibson.

The Thomas More Law Center defends and promotes the religious freedom of Christians, time-honored family values, and the sanctity of human life through litigation, education, and related activities. It does not charge for its services. The Law Center is supported by contributions from individuals, corporations and foundations, and is recognized by the IRS as a section 501(c)(3) organization. You may reach the Thomas More Law Center at (734) 827-2001 or visit our website at www.thomasmore.org.

Tuesday, July 29, 2008

Tuesday's Gone...

(Wow... pulling a Lynyrd Skynyrd song title that's not "Freebird"...)

Don't get me wrong - I love Tuesdays. Tuesday's a good teaching day, for the most part, for me. And, I teach three lessons with three kids who are cool and talented and fun. And, I have my barbershop chorus rehearsal at night, with a GREAT bunch of talented guys. Tuesdays are great days.

The only problem is, I leave home at 7:30AM and get back at 11PM. That's a LONG time, nowadays, to be away from home.

Big change from real life, B.C. Before, that would be the norm - neither my wife nor myself would be at home between the hours of 7AM and 9PM on any given day of the week. Not any more, with The Boy around - neither of us wants to stay away that long!

I got some good time with him this morning, for breakfast. We woke together at 6:30, and we had some playing time while breakfast was being prepared (by me). We ate together and had some good conversation - mostly me kvetching about the Yankees' lack of consistent hitting. I changed two diapers and had an all-around good morning with him. But, I haven't seen him much today - and I'll get a half hour with him in the morning before I leave again tomorrow!

I feel like I'm missing so much when I'm not around. For instance, my wife told me that he pooped in his potty TWICE today! That's pretty cool, and WAY more than I have done. And, even better - I missed the time that he crawled off the potty and peed on the floor. That's entertainment.

Tomorrow will be a good day. I'll be home at lunchtime, and we'll play together before my marching band meeting (at my house, thankfully, to go through unit planning specifics for the ensemble). Afterwards, we'll nap together and walk to the comic book store. I'll work out, and he'll play in his playpen - we'll enjoy that funny "gravity" game that he likes to play (drop a toy out of the playpen and laugh hysterically; Daddy picks it up and hands it back. Repeat as desired). We'll have dinner together and watch the baseball game.

Thursday, I'm bringing him to school with me. The Wife & I will show him off for a little while, because he's fun to be around. We're meeting our Aunt at the hospital - she has graciously volunteered to take The Boy to chemo once a month during the fall while I'm busy with the new job and marching band.

Isn't that great? One always expects family to come through in the crunch, when they're needed - but, it's still REALLY nice when they actually do come through. It's gratifying, and it further reinforces the fact that I made the right decision when I married my wife. Not only have I married a beautiful, intelligent, talented lady, but I married into a big, vibrant and supportive family.

All right. It's time for bed. Long day - fun day - tomorrow.

Monday, July 28, 2008

Babyproofing, part 3

As I've been following my dextrous little monkey around the house over the past several months, and as we've been gradually babyproofing the house, I've figured out a secret that babyproofing experts don't want to tell you:

There's no such thing as babyproofing.

The only way to make something truly and completely babyproofed is to lock it in a room in your house. I mean, put it in a room, close the door, and padlock the door with a really good Masterlock. That's it. Oh - and, make sure that the lock has one key, and that key is swallowed. A determined child will try every combination until they find the proper one, or wait until you're asleep and borrow the key, or find the slip of paper in your wallet that has the combination written on it. But, I digress.

We put some "child-proof cabinet locks" on the kitchen cabinet. These have been advertised as being childproof to about age three or four, when - perhaps - you're slightly less concerned about the kid drinking drain cleaner.

(Childproofing tip #1: store all deadly chemicals under lock & key in the garage - then, don't let your kid in the garage.)

The Boy, when he finally noticed them, took them off the cabinet in approximately 2.5 seconds. Now, to be fair, we had to use two of them, linked together in a chain, because of the peculiarities of the cabinet handles; and, his method of entry was blunt force, but, still... that's pretty quick. So, what do we do about it?

Well, nothing. Two major reasons:

1) We have a drawer in the kitchen with toys, pots and pans inside. The Boy knows that toys are contained inside this drawer. We're intelligent enough to rotate the toys every once in a while, so he's finding new things in there on a regular basis. Because of that, when he's in the kitchen, he's going to (mostly) head for his drawer, because it takes less effort to find fun stuff than the locked cabinet.

2) We don't let him in the kitchen by himself for longer than it takes to walk in there from another room in the house.

Reason #2, above, is the real secret to babyproofing. No product on the market is going to allow you to have a house that your baby will roam around in by himself and not get hurt. Babies are going to get hurt if left by themselves for any appreciable length of time.

(Example: the other day, The Boy was sitting peacefully, playing with one of his chew toys. For no reason, he proceeded to "enjoy" a face plant on the carpet. He wasn't crawling, he wasn't reaching for something; he just tipped over. That happens sometimes. I read somewhere that scientists believe that babies are affected by gravity differently; or, he's inherited my wife's clumsiness. Either / or.)

The secret to babyproofing, then, is this:

Reason A: to make the bad things difficult enough to play with, that the good things become more attractive to them;

Reason B: to minimize accidents (bumpers on sharp corners, gates on stairwells, et al); and

Reason C: to delay them long enough so that you can grab them before they start playing with the pretty liquids under the sink.

Once I realized this, babyproofing became a lot easier. The Boy is - G-d willing - never going to be left alone in the upstairs - at least, until he's in middle school. Then, we'll talk. Therefore, I'm not particularly worried about the toothpaste, deodorant, toilet paper and Lysol wipes under the sink in the bathroom. He's not going to be in there by himself. I'm not worried about the wine rack, behind the easy chair; he's not allowed to play behind the chair. I'm not worried about the music studio; he won't be in there by himself until he's independently practicing a musical instrument. At that point, hopefully, I won't worry about him trying to eat the iPod cords.

We installed a good baby gate on our stairs, and we don't have sharp edged furniture anywhere in the house (no end tables, coffee tables, anything like that). The television is a popular target of his, but - again - he's not left alone. I have some cabinet locks for the bathroom anyway, and a few power strip-enclosers, which I haven't yet installed. I've put outlet covers on the electrical outlets, because that sort of thing runs in the family.

(Two of my older brothers were at the doctor's office, because the older one needed an appointment. The younger one was playing on the floor quietly - first sign of trouble - while Mom was talking with the doctor. All of a sudden, there was a SNAP, and he shot across the room. Apparently, he found a penny somewhere and decided to stick it in an electrical socket.)

I'm sure that there are special things that we're going to have to do because of his chemo and such, but none come to mind, yet. We keep a fairly sanitary house - clean but disorganized - with hardwood floors, so we don't have carpet issues to worry about. We'll see.

What do you think? What babyproofing things have you HAD to do, and what things did you do that were useless?

Sunday, July 27, 2008

Review: gDiapers


I had heard about gDiapers before The Boy was born, possibly before he was even conceived, because I was discussing the family history of sensitive skin on both sides and someone recommended them as an equally convenient alternative to disposable diapers. I tabled the idea because they looked to be too expensive and still a bit too difficult. I was also unsure of Musical Daddy's willingness to put up with the extra steps. I needn't have worried.

Fast-forward...past the first 2.5 months where The Boy was constantly breaking out from disposables and we made the switch to cloth diapers. Past month 7 or so when the poop started to look like poop and we needed a way to flush it (by the way...you're really not supposed to throw poop in the trash). Here we are in cancer treatment land, and we are faced with the prospect of a baby who, every few weeks, will receive intravenous medication that will cause his urine to turn red or pink. We also noticed that for the brief time period before the surgery, when The Boy was in disposables, he was getting a rash from Pampers. So this sensitive skin stuff isn't in our head.

I purchased the starter kit for $25 at Whole Foods. The gDiapers starter kit includes 2 "little g pants", 4 snap-in liners, and 10 flushable inserts. Plus a swish stick and a little hook for hanging it. Not bad for $25, considering the cost of fancy cloth diapers. The instructions are pretty simple--shove the flushable insert into the liner (it is MUCH larger than the liner and is supposed to cause the liner to "bow" instead of being straight. Don't fold the liner.). Snap the liner/insert combo into the pants.

Put the diaper on the baby. Here's the first snag: these diapers velcro in the back instead of the front. Probably even more difficult on younger babies but not a picnic on The Boy either. I wasn't sure if I was getting a snug enough fit.

Change about as often as you would any other diaper. The insert is removed from the diaper. You tear the insert and let the insides fall out, and then you swish it a bit, and flush. The next snag: this may be gross especially if there's poo. You may want to rotate among covers to let them air-dry. Wash with normal laundry or with normal diaper laundry if you cloth-diaper. Since we were using gloves during toxic pee time, it was less gross to rip the insert. But babies are gross in general, so you get over it.

There was a poopy diaper, which was not contained very well. It didn't escape the whole diaper but it did get on the pant, rendering it unusable until the next washing. The rest of the diapering experience with these worked fine. No leaks, no other issues.

The whole process is more complicated than disposables and probably as difficult as cloth, minus laundry. However, price-wise it is somewhat expensive. The inserts run about 50¢ each, which is more than disposables, plus the cost of the pants and liners, which you'd have to buy in three sizes. That said, it costs only a little more overall and you neither have to do extra diaper laundry nor throw away a bunch of stuff that will take about a hundred years to decompose. If you throw away a gDiaper insert, it still breaks down relatively quickly.

There are also some options. Some people who use cloth diapers find it easier to use gDiapers when they travel.

Overall, I find gDiapers to be a good product for "sometimes" especially the times that we're using them. They are effective. They are cute. They are a bit difficult but not too bad...if you're looking for a part-time or full-time eco-friendly option, these work.

Saturday, July 26, 2008

Cute man!

Here's The Boy, interacting with the Child Life specialist at the Valerie Fund Center. Ms. Laura is a really cool lady, and her job is to help the kids feel better about their treatment and to have fun while they're there. She's the favorite person of all the kids at the Center, because her job is to play and have fun. The nurses all have to do painful and terrible things to the kids; the Child Life specialist lays with them and helps them to feel better.

I would HATE to have that job. I don't know how I could do that. It must be an amazingly difficult thing to do, to keep a positive and happy outlook on life while dealing with so many sick children, including the number - WAY too large - that are terminal cases. Teaching is hard enough. But, she's really, really great, and I'm looking forward to watching her relationship with David grow over the years.

This really was a more difficult chemo treatment than the others. He's been very, very tired - three naps (little ones) today, ten hours of sleep (with three wake-ups, all brief) last night, three naps on Friday. His appetite has been less, and he's still suffering some acid reflux issues.

Then again, so many other things are going well for him. He's crawling around like a maniac, doing everything a baby is supposed to do. He's been playing "The Great Hunter" for the past couple of days - trying to pick up and eat bugs crawling around. (Bad thing that the bugs are around; I'm hoping that it's just ladybugs and not a roach. I saw a roach today, but that's the only one that I've seen in a year or so. We'll see what'll happen.) He's also made a habit of pouncing on unsuspecting parents - the second that I've turned my head, I get jumped on by a cute baby.

Enjoy one more really cute picture:

Friday, July 25, 2008

The times, they are a-changin'...

Oh, man, that brings back memories... I remember going on the "Bulletin Board Systems" to hang out when I was younger. And, by hang out, I meant to carry on discussions through boards with a lot of local people. It was great - the people there didn't care that I was 12 / 13 / 14 years old, they just cared that I had an opinion that could be reasonably and rationally defended. In many ways, the people I hung with were like the good folks over at Galactica Watercooler, a podcast I love. Age doesn't matter, race doesn't matter, education doesn't matter... just a person's ability to discuss thoughts and to experience new literature.

To show how things change - this would be, oh, 1987 or 1988. A bunch of friends of mine from the bulletin boards got together at Eagle Rock Reservation for a big picnic - like, 25 or 30 of us. My mother drove me to the Reservation and walked me to the park.

Then, she got in the car and went home, leaving me, a 13-year-old, with my "internet" friends.

Could you imagine doing that, today? Granted, it was a BIG group of people - not two or three weird fat guys in overcoats, glancing into the woods furtively and drinking from metal flasks.

The day went wonderfully - full of fun games (frisbee, volleyball, water-gun fights) and food and discussion, trading books and much teasing about silly things and conversations that had taken place. I was the youngest one there by a couple of years - most of the people were early-20's to late-30's, with a few high school students and a handful of college students.

I don't know what happened to my friends, most of which were on a BBS called "Through the Looking Glass." I remember a British fellow who joked that he had no modem - merely two whistling aardvarks. I remember the nice woman that ran the system, and a guy named Buzz that was a couple of years older than me, who gave me a straighten-up-and-fly-right e-mail that stopped me from becoming one of those "n00bs sux" guys (thanks, Buzz from Livingston, wherever you are).

Nowadays, though... if you left your 13-year-old with a bunch of adult friends he met on the internet, DYFS would come and take your kids away - and, likely, rightly so. It's a different world, today.

Hello over in Egypt!

Fantastic to finally figure out our reader in Egypt (and I'm kicking myself for not getting it earlier). Before Facebook and MySpace, before AIM and MSN messengers, there were the EW-Too talkers. Nothing but a text terminal and a bunch of your bestest buddies and I'm glad to say that I've been in contact with many of these people for 13 years. This particular friend has always been interested in Egypt and it's pretty cool that she's there now.

So, hello, and thanks for keeping up with us!

When the workload is divided between four people...

...the nights become a lot easier. Funny about that, isn't it? When the duties are split up, life becomes easier. My mother-in-law took the 1:30, my wife took the 3:30, my father-in-law rocked him back to sleep from 4:30 to 5:30, I took the 5:30 change. And, life is good.

Now? He's crawling around the living room, getting into everything, just like he's supposed to be doing. Today, I'm going to take him with me to work, because having a baby with me (when talking about the possibilities of schedule vagueries due to cancer treatments) makes things that much better. When they can put an incredibly cute face to the name, things get smoother.

Whew. The tough part - the first night - is down.

Thursday, July 24, 2008

Argh.

So, I had a nice blog entry done at a computer in the Valerie Fund Center (the outpatient children's oncology center at St. Barnabas) about our experience today, and the internet ate it up. Here's the skinny on everything, so far.

Today was more difficult than the previous treatments. We laid him down, rinsed the port, took blood, injected the first medicine, and hooked him up to an IV unit, getting anti-nausea medication and fluids. We then waited a half-hour or so to get the readings on his blood counts; they were acceptable. He crawled around the children's plaroom during this time, doing his best to taste every single little block in a container of 75 or so. It was quite cute.

The doxorubicin, or "Red Devil," is a little more serious than the other drugs we're taking, I think. (Then again, we're only taking the dactinomycin every four or six weeks, also. So that one seems to be pretty bad as well.) He isn't supposed to move around too much while he's taking the doxorubicin, because if it gets into the muscles and tissues, Bad Things will happen. He's too young to sit still and watch television, so we took turns carrying him up and down the hall, looking at the pictures. He took fluids for another half hour or so afterwards as well.

So, rough time frame - 11:15 arrival, numbing cream (because we lost the original tube) took until 11:45 to take effect. 60 minutes to take the first medicine and wait for the blood counts. 45 minutes to take the Red Devil, and another half hour or so of fluids. 2:15 out the door, home at around 3 o'clock. Long day.

He fell asleep in my wife's arms in the hospital, which is why I had time to blog. But, still.

We met the potential babysitter for next school year. She's really nice, and - pending reference checks - we're probably going to go with her. The Boy took an instant liking to her and was all smiles - but, he was all smiles all day today. Afterwards, we walked to the bank, the comic book store and CVS, where we discovered that, frequently, they are not hiring people from the far right of the bell curve to work the registers.

My in-laws just arrived, which I'm happy about. We can use the help.

Monday, July 21, 2008

Come Monday, it'll be all right...

I've been moderately obsessed with Jimmy Buffet, since I lived with a Buffet fanatic in my sophomore year in college. He was a theater design major, specializing in lighting; I lost track of him when he transferred to one of the Virginia schools after our sophomore year. Anyway, at every party, and every night when just hanging out, we listened to Jimmy Buffet. So, at this point in my life, I know all or most of the words to pretty much every Jimmy Buffet song, pre-1997. I've even seen him in concert - we painted a pickup truck grey, with teeth, duct-taped fins to the top, side and back, and we drove a shark to the show. I bought the Rock Band Buffet track pack the day that it was released...

Interesting day, more or less. The Wife gave The Boy plenty of naked time today, and he's rewarded her with peeing in the potty twice today. (Once in the morning, once in the evening.) That's pretty cool, even if it's accidental at this point. She even had him outside for a little while, on the advice of her mother - Grandma said that a little bit of sunlight (the baking, brutal, 800-degree sunlight in central New Jersey) would be good for the rough, bleeding fungal diaper rash infection that he's been fighting since last week. (Nothing better during Chemo time than having a bleeding rash on your rear end!)

Regardless, it was still extremely cute to see baby butt standing on the lawn in the back yard. Particularly since he enjoys his naked time as much as any of us do; and, he's inherited my bum. (Which is good - I have a sweet tuchus, or so I've been told.)

He took a REALLY LONG nap this afternoon - from about 2:30 to 5:30, which suited me fine, as I slept with him from 3:00 until 5:00. (Delayed, because I was finishing up "The Proteus Operation", by James Hogan. This book is cool - in 1975, the United States was the last democratic nation left in the world. Hitler had conquered the entirety of Europe, including the Soviet Union, by 1947, thanks to atomic bombs given to him by time travellers from 2025, who came from a world where World War II never happened - cooler diplomatic heads prevailed in the 1920's, preventing the depressions in Europe and America and fostering an atmosphere of world peace that threatened to put the old oligarchys and economic elite out of business. These time travellers went back to 1929 to put the Nazis in power, so they'd have a world to control. This 1975 America found this technology from stolen German documents, and sent a team back to 1939 to try to change things and put the world back on its rightful course. I love alternate history / time travel stories like this, and I had 20 pages to read while The Boy fell asleep.) At 5:30, we walked to CVS to pick up some prescriptions for me, then ate burritos with The Wife for dinner.

After dinner, they played outside while I lifted weights and played with them between sets. He went to bed as I finished my workout, and I chatted on the phone with friends for a while before blogging as I burn 20 CDs for my chorus to use at rehearsal tomorrow. He fell asleep late - around 9:15-ish, which makes sense considering his long morning nap.

We've kind of bit the bullet a little bit - we're holding firm on the "falling asleep in his own crib" thing at night. In the wee small hours of the morning, when the whole world is fast asleep, and the baby needs his nighttime nursing (well, doesn't "need," but would prefer), we bring him into bed with us for the rest of the night. I know that we should be working him into sleeping the night without that (really unnecessary at this point) nighttime nursing, but considering that he's in chemo, we're willing to allow him to nurse at night for as long as he needs it. When he's done with the chemo, we'll entertain the conversation of forgoing the nighttime nursing. When chemo starts to really bite into him, we know that nausea and difficulty holding food down will happen; we also know that mother's milk is quickly absorbed into his body, meaning that he'll still maintain hydration and some nutrition even if his food rebounds.

So, we'll see how that works for a while. In the meantime, I'm tired and want to go to bed.

Sunday, July 20, 2008

Today, another good day.

I know that things are going to get more difficult as time goes on - I know that chemo is a cumulative thing, and that there are going to be bad days as time goes on. I know that this weekend is going to be more difficult than the previous couple of weeks because of the doxorubicin; it's a 15-minute intravenous drug (he can play and stuff while he's on the IV, but it'll be in for 15 minutes or so) that will, apparently, turn his pee red, pink, orange or some combination.

But, today was a particularly good day. From the moment that he woke up and continuing through now, he's been in a brilliant mood all day! He's been happy, smiling and fun all day today! I mean, he's been REALLY, REALLY smiley and fun - I don't think I've ever heard him giggle as much as he did this morning, and I've never seen him smile so much.

Not that today was a particularly interesting day. We played from 7AM (when he got up) until the two of us lay down for a nap from 10:15 to 12:30 this morning, then we hung out with my father while we watched the ballgame. He was playing, and cruising along the furniture, and crawling around, and trying to grab different electronic toys! It was extremely cute and fun.

Later, he napped again from 4:30 to 6:30, which means it'll be interesting to see when he'll actually go to bed.

Another side effect of the medication, apparently, is a slight change to his taste buds. The doctor told us that he would start to strongly prefer salty and/or spicy foods to his normal diet. Yesterday at the Red Robin for dinner, he ate a lot of spicy chicken from my wife's plate; he also had his first french fry. This morning, he was not enthusiastic about his eggs until he had the "family spice" - onion salt. Weird, but not that strange.

He did just eat a hot pepper a minute ago and is really unhappy about it. What is it about babies that makes them so cute, even when they're crying?

Saturday, July 19, 2008

Saturday, Saturday, Saturday...

Tonight, we're going to see the Dark Knight, while The Boy stays with Aunt C. I'm a little nervous about that, but I'm an overprotective father and will be nervous about anything. They're meeting up with us at dinnertime, at the Red Robin. Fun!

Another first today: I was crawling at The Boy, and he realized that it was a game, giggled loudly and started to "run" away. It was REALLY cute, and lots of fun. I do it to him all the time, but he's now seemed to figure that it's a game.

Friday, July 18, 2008

Funny little man...

Today, I got done all I wanted to get done: the lawn, cleaning the garage (including the work bench, which hadn't been touched since, like, 2005), the bathrooms & the garden. It was nice that Aunt C was here, because it let the wife and the boy have company during the day, thus letting me get my work done.

So, I figured that, tonight, I would take advantage of a doting aunt to do some schoolwork in the bedroom... no dice. I received a visitor about ten minutes into work: The Boy, crawling at lightspeed down the hallway, coming up to the bedside, pulling himself to standing, and laughing hysterically at me. I can't resist a face THAT CUTE; so, we had some nice Daddy-Baby bonding time, playing on the bed, tickling, hiding from, and just having a beautiful time. He got grumpy for milk, and Mommy wisked him away. He played inside for a few minutes, then came right back into the room with me. He got bored, and wandered off down the hallway. Ten minutes later, he came back for a "good-night" play.

It was really fun. He's just a cute, good-natured kid. I'm lucky.

F&cking cancer.

Again, better than last week...

We got on the even numbers for some reason yesterday, so the planned changes were at 12, 2, 4 and 6 AMs. I got to sleep at 12:15, after an interesting discussion with my wife about the exact schedule. Her first idea was to take the 2 and 4 shifts herself, and I'll take the 6 and 8; but, 4AM is REALLY late at night, and The Boy would wake her (sort of) to nurse, anyway.

Is this every-other-hour thing standard among babies who get chemo, or is this just a side result of ours? Let me know, folks.

Anyway, at 3:15AM, I was awakened by a screaming, cute little boy. I thought I had overslept, so I changed him before I realized that I was early for the change. Okay, no big deal - we're back on odd numbers. He was awake, a bit, so we watched an episode of Scrubs and went back to sleep.

At 5:30, my wife woke up and needed a little help, but she changed him right in the bed and all went back to sleep quickly. At 7, The Boy woke up and decided that he would use Mommy and Daddy as climbing posts. So, we're awake.

I changed him at 7:10, and we went inside to play. After about 5 minutes on the floor, he came over to sit on my lap, when... sniff sniff... oh, boy. Poopy. On a bleeding-raw-rashed rear end. Mommy got up to help, and now Mommy is dumping the baby in bed with Aunt Carla, who arrived last night at around 1AM to help for the weekend.

We're hungry and want to go to breakfast and are not above fighting dirty.

200th post! Hooray!

I love Google Analytics - they tell me what country y'all are from. 27 visitors from Egypt? That's AWESOME! Hello, friends from Egypt. Say Hi - I'm really, honestly and authentically interested in what you have to say. What does Egypt, New Zealand, Japan and Australia (Hi, Jo!) have to say about the whole co-sleeping thing?

Thursday, July 17, 2008

Gallimaufry...

Recently, The Boy has decided that he's afraid of, or angry at, the shower. He will crawl from anywhere in the house to the bathroom door, push the bathroom door open, crawl over to the bathtub, pull himself up to standing, and then cry like he's just fallen down a flight of stairs. I mean, screaming and carrying on and crying like he's been bitten by a rabid dog. It's actually kind of cute, but I hope he doesn't use this as an excuse not to shower later in life.

Right now, he's got a NASTY fungal diaper rash - it's actually bleeding, when his little behind is wiped. Combine that with hard constipation-poops, and diaper changes are traumatic. The poor little guy was screaming at us all day. We have an anti-fungal, but it takes a little while to clear up. I wish he hadn't inherited my skin - I get fungal infections pretty easily. Oh, well. Ya gets the good genes with the bad.

I got peed on tonight. Normally, getting peed on by the baby isn't a big deal - you just damp it with a cloth and move on with your life. However, when he's on chemo, and the drugs that he's on have the side effect of causing sterility or worse, getting peed on becomes a hazmat situation. Strip down immediately, wash the places with warm / hot water, and change clothes. Sigh. Six more months of this.

How much do you tell strangers about your kid's cancer? We excused ourselves from a community event tonight so that we could go home and change The Boy's diaper with proper containment procedures - good thing, considering the poop situation. It's an awkward thing, to kind of quickly wrap up a conversation with a new friend and leave for home. I don't look forward to having the conversations at school in the fall, either; "Mr. May, why do you leave on Friday afternoons, early?" "Uh... no reason."

Again to point out: when people say, "How ya doin'?", all they want to hear is , "Fine." Not, "You know, my son was just diagnosed with kidney cancer, and life sucks at this exact moment."

I was called for jury duty at my last address. I don't even live in that county anymore. Can they still arrest me, considering that I got the notice right before I started living at the hospital with The Boy? Probably, although if they sent cops to the Essex County address of my last residence, they will be sorely disappointed. Surprise the heck out of the current residents, though.

My sister-in-law is coming up tonight. I'm really glad for the help. Tomorrow is Chores Day: clean the bathrooms, pay the bills, vaccuum the downstairs, weed the garden, sweep the garage and mow the lawn. More or less. With a nap thrown in. We might go to breakfast, but we'll likely wait until Saturday morning so we can hit the Farmer's Market in town. Then again, one does not rely on the other.

That sucked less than last week...

So, the nurse figured that they had such a problem finding the mediport securely because of the way that The Boy was sitting on my lap, so they asked us to lay him down flat on his back for the administration of the vincristine. And, sure enough, she was right: insert needle, take two things of blood, one flush syringe, insert vincristine, insert one more flush, then the heparin, and he was done. No muss, no fuss, only a little bit of "get off of me" crying.

Babies do SO love being held down.

That was it. The only reason why we were there for even an hour is because we waited a half hour for the shuttle driver to come back from dropping a family off in Elizabeth. Easy peezy, simple as pie. Thank G-d.

Don't get me wrong - the drug still sucks. But, it's a LOT better than last time.

Next week - the doxorubicin. Nasty stuff.

Wednesday, July 16, 2008

What a week, so far...

This week is called: "No sleep, zombification."

Four hours on Sunday night. Five hours on Monday night. Five hours on Tuesday night. And, one exhausted Musical Daddy who spent the day snapping at his students for being children.

This is just stupid.

I think we're over the hump, though. It's a difficult hurdle to climb: how do we balance The Boy's need for extra comfort during his time of need (he's REALLY beginning to sense that Something's Wrong), with the "normal" developmental stage of not feeding at night and sleeping in his own room / own crib?

On Monday night, I finally got ticked off enough at having to get up every hour that, at 1:45AM, I just picked him up and brought him to bed with us. Then, his nursing could be done like it usually has been done at night - with nobody waking up enough to make a fuss, particularly me.

I'm still vaguely haunted by the idea that it's "wrong" to have The Boy nursing every hour or so, and that it's "wrong" to have him still sleeping with us at 10.5 months. The thing is, I just don't see an alternative!

When we put him down in his crib in his room, it's not too hot or too cold. There's no air being blown on him by a fan or a vent. There's no extraneous noise that doesn't exist elsewhere in the house. There's a nightlight, and the door is cracked so that the hall light comes in the room (as well as normal household noises, which I've been told is good for them to hear). When he fusses, we hug him, sing him soft songs, and either rock him to sleep in our arms or sit by him (holding a hand or just sitting, whichever he wants). Then, he's down in his crib and asleep, and we leave the room.

Five minutes - or five steps - later, he's awake and SCREAMING, and we start the whole 15 minute procedure over again. Every third time, he "needs" to be nursed.

The chemo's side effects include fatigue (!), jaw pain and nausea, among others. There's nothing in there that should cause such a dramatic reduction and regression in his sleeping patterns. The jaw pain, if he's suffering from that, should cause a reduction in appetite, and he's eating more now than he ever has.

Maybe the fact that our schedules are reversed - The Wife is home with him during the day, and I'm home with him at night - is screwing him up. I mean, we went from her school year to the hospital to the new schedule, so I guess it is entirely possible that he's screwed up from that. He's not used to spending the day with Mommy and the afternoon / evening with Daddy.

Most likely, it's a combination of "all of the above." It's just so DARN frustrating! It's seriously affecting my teaching and my abilities to interact with the people around me. My patience is shot, my energy level is non-existent and my motivation is nil.

Good thing he's so darn cute... that smile of his could melt an iceberg in the arctic, it's so warm and fun and friendly.

Sunday, July 13, 2008

Is it the drugs?

Lately, The Boy's been nursing about every two hours or hour and a half during the day, and he's been nursing at least twice every night. This is strange for him; even when he was in bed with us, he'd only nurse once (at most) at night.

He's been a little backed up and constipated the last two days. He's still pooped once per day, but today's was hard as a little rock.

He's not sleepy soundly at all - little noises wake up, and once he's up - he needs to nurse.

Is this the result of the chemotherapy? Is this normal baby stuff? How can we tell the difference? All this stuff is stages that the baby will normally go through - variations in how much and how often he eats, poops and sleeps. That's normal, I guess. But, is this normal baby stuff, or the result of the chemo?

It's so damn frustrating. At 10 months, he's not supposed to have unreasoned fits like he's had tonight.

...so... sleepy...

That, of course, is how my wife and I feel right now. The Boy is absolutely tottering over with exhaustion, but he is just NOT going to sleep.

Yes, on Thursday, he slept for about four hours in the afternoon; but, receiving chemo sucks big time. One of the side effects of Vincristine is fatigue. Thursday night, he slept... well, he slept. We had to change his diaper every two hours. Sometimes he stayed asleep. Sometimes (most notably, from 3AM to 4:30AM), he woke up. He came into bed with us after the 5AM changing and was UP at 6AM.

Friday, he napped for a total of about thirty-five minutes during the day. That night, he went to bed at 9, and woke at 11, 1, 3:30, 4:30, 5, 5:45 and 6:30. Saturday, he napped for an hour in the afternoon, and that was it. Saturday night, he woke at 11 for an hour, then again at 1 and 3:30. Today, he napped for an hour in the morning and for a little bit in the car back and forth to my brother's house.

We're exhausted. I mean, really and truly exhausted. So is he, but he just doesn't want to sleep.

On the fun side, my wife played a lot of drums in Rock Band tonight. She's got good rhythm, for a string player.

Friday, July 11, 2008

I almost feel guilty...

Nights like tonight amaze me. The Boy and I had a joyful 45 minutes of playing after he got home from temple tonight. He was laughing and giggling - I think I tickled him so much that he wet himself.

Then again, he's a baby and does that well enough without encouragement.

It's so much fun playing with my baby! He's a neat guy, and we've got games and interactions that I can't really describe with words. It's just how we communicate with each other. Tonight, it really worked - he was happy, smiling, laughing and having a great time, right up until he stuck his thumb in his mouth, put his head on my shoulder and fell asleep.

It is SO hard to believe that he has this life-threatening, life-altering illness that - two weeks ago - required the complete removal of a kidney. I know that one of the symptoms of Wilms Tumor is that it has no outward symptoms. Those diagnosed with Wilms tend NOT to show behavior changes and outward symptoms. I, personally, look at my baby with wonder and joy. How can he be this sick?

When I hear "pediatric cancer," I think of those waif-thin children in hospital wards on television. They're all bald (which will happen in the next couple of weeks, I know) and sickly and can't move around on their own without help. They're all coughing and hooked up to IVs 24 hours per day, and clowns and things come visit them.

(...and, according to the Buffy episode from season 2, so do demons. But, I digress.)

When I hear "pediatric cancer," I DON'T immediately envision a happy, smiling baby who crawls around the house and tries to get at the electrical wires and DVDs and books and cabinets that Mommy and Daddy won't let him have. I don't envision a baby that sleeps well (as well as any 10-month old) at night and eats like a horse for the three meals per day that he's given. I guess I do envision a baby that nurses 5,286 times per day, like mine does; kind of.

There's times when I'm uncomfortable talking to people about how The Boy is feeling, because I almost feel guilty that he doesn't match the profile that I've come to expect from watching WAY too much television. I know the bad days are coming - the nausea and vomiting, the crappy-feeling, the lethargy and sickness - even if they're not here yet.

We're through the major crisis. He's recovered - pretty much - from the catastrophic surgery which he underwent. The scar is starting to recede into his abdomen already, and he shows no physical signs of surgery. What's left is the long haul - the long, steady, dreary, unexciting, dangerous, toxic and unrelenting treatment. This will all happen, incidentally, while I'm struggling with a new job (making FAR more money than I'm likely worth) and in the middle of the busiest and most stressful band time in the year (marching band).

We've been telling people, "Thanks for the offer to help - we'll take you up on it in the fall." We will. We'll have to. The days and nights after chemo almost wiped us out last night, and that's when we're both not working and able to nap when required. I'm terrified about what it's going to be like in the fall, with the stress of 80-hour workweeks ahead of me.

But, it's still a little bit awkward, talking about Him right now. "How's the baby with cancer?" "Well, right now, he's great - laughing, playing, active. But, don't worry. That'll change - he'll get worse."

Sigh. I know that that lack of knowledge and that innocence is what makes pediatric cancer SO much more survivable than adult cancer. I also know that I should be counting my blessings instead of waiting for the other shoe to drop. But, I'm a worrier.

New Source of (Non-Kosher) Protein...

This must come from my wife's side of the family:

This morning, The Boy was hanging out in our bedroom while I was sorting laundry. I saw him making chewing motions, which could have been him trying to "talk" to me; but, it wasn't. I ran over and stuck my finger in his mouth to root out what it was, and... well, yuck.

It was a ladybug.

Doesn't he know that they're not kosher?

That, also, was not on my list of "fun nights."

We watched the BHS Quartet Contest last night on webcast, which was fun. Congratulations to OC Times, who won the Gold Medal; they're a fun quartet of nice guys who have a lot of talent and personality. The Boy fell asleep on my wife's lap at around 9:00 and was placed in his crib soon after.

We got a LOT better, yesterday, at changing him in his crib / our bed / wherever without waking him. So, we changed him at 9, changed him at 11, changed him at 1 without waking him. I fell asleep around 12:30.

I woke at 3AM to change him and did a miserable job - because he WOKE up. And, he was up until almost 4:30 (when my wife's turn to change him was at 5). Miserable. I was exhausted enough to be near-delirious, and she was nice enough to take my 7AM changing and let me sleep an extra hour and a half (almost). I have an interview at 10AM, which will solidify my job for the fall, so I need to be reasonably conscious.

That was just not fun. This every-two-hour thing, while necessary and understandable, is not fun. I hearken back to blog posts made in October of last year, when the schedule of "every two to three hours, 24 hours a day" was really getting to me.

At least I was smart enough to bring him to our bed at 4 o'clock instead of wrestling with him for the crib. I don't think that I could have handled that.

Thursday, July 10, 2008

Site Update

Just added a widget written by topix.net about Wilms Tumor news to the left, so enjoy. Also, I put Google AdSense on the site - click on the links often, and order stuff if you need it, because we get kickbacks. And, money is good. Also, I put an RSS feeder up for your enjoyment.

Any suggestions?

Well, that just plain sucked.

I got to the hospital today around 10:45; The Boy's appointment was at 9:45, and I taught a half-day of the half-day program up north. He had just been brought into an examination room for the start of the chemotherapy. He gave me a big smile when I walked in, which was reassuring. The Wife had put the numbing cream on him at the appropriate time, the drugs had just been delivered from the hospital pharmacy, so things were perfect.

Side note: The Valerie Center at the hospital is unbelievable. Best for me: the apple crumb donut in the "food" center. The coffee there is "meh" - it's from a dispensing machine, which means that one is drinking, for all intents and purposes, coffee-flavored beverage. It's the right price, though.

But, I digress.

The nurse - there were only two nurses on duty today, because two were away & one doesn't work on Thursdays - was going a little nuts because of the activity in the center. The children's life representative was a sweet young lady who established a great rapport with The Boy; she was there to provide distraction. The nurse took the needle, put it in the port, drew some blood to check that it was in, then flushed the line with saline. Except - whoops! The needle slipped out of the port, creating a big ball of sterile saline solution between the skin and the port.

The Boy, meanwhile, was screaming his head off. He was in my arms, I was holding his hands with mine and using my face to keep his head to one side. (You can't get tears or drool or anything on the needles going into the port, because infection is REALLY BAD.) When I mean screaming, by the way, I mean full-body-tensing, from-the-diaphragm, top-of-the-volume-scale yells. It was terrible.

The other nurse came in and drained the saline solution. (This isn't a big deal. It's just water and would drain on its own; but, she basically squeezed it like a pimple. The water came draining out.) The baby loved that, as you can imagine; she then hunted around for the mediport with a larger needle, found it, and administered the medicine and two syringes of stuff to disinfect and clean the port.

It wasn't the nurse's fault; until the port gets used, it stays far enough beneath the tissue to be difficult to find. It was just frustrating and horrifying to be holding my screaming baby and knowing that there's not a damn thing that I can do about it. It's frustrating that it's taking so long for the hospital to administer the toxic chemicals that will - we think - heal my son from the catastrophic illness from which he suffers.

One down, twenty-three (and a surgery) to go.

8 more hours...

...until the official "Week 1" of the chemotherapy. We're all awake in the house right now, watching yesterday's "Attack of the Show" on the TiVo, because they're showing an interview with The Onion's writer & editor and because they have a segment called "Break Moments of De-Evolution" that highlights internet videos of people trying to kill themselves. The Boy was screaming in agony a little while ago, but he & my wife seem to have settled down and are almost asleep on the lounge chair.

The chemo officially starts this morning. I'm scared about it. I want him to be healthy, I want him to be happy, and I'm terrified about the damage that the chemo might, can and will cause. Side effects are a real pain - pun intended - and we're not looking forward to waking every two hours for the next two days to change him.

I'm teaching until 10 o'clock, then meeting them at the Valerie Center at the hospital. Argh.

Tuesday, July 8, 2008

My wife knows me well...

Last night, I woke up with The Boy at 3AM, put him back to sleep at around 3:20, and never fell back asleep. So, I lived the school half-day with about 2.5 hours' sleep - not a particularly unusual circumstance for new parents. It sucked to be up that late, but I put an hour's time on "God of War II," so it was worth it.

(I love my "Sony" credit card. We get points for every purchase with the card... I traded in a bunch of points and got that game for free. Life is good, sometimes.)

I got home in the afternoon, ate lunch with my family and played for a while. The Boy started yawning and rubbing his eyes, which delighted me - NAPTIME! He's my nap buddy, after all. The three of us lay down, and only one of us fell asleep.

So, The Boy and I went out of the room and left my wife to nap. We played for a bit, then I put him in his playpen downstairs so that I could mess around on the computer. I went to pick him up, and he ignored me. He was enjoying the toys in the playpen too much. I shrugged and brought the diapers and inserts to the clothesline to hang to dry.

(I'm very proud of this new clothesline area. It's one of the stand-up hanger-things, and the bottom rusted out about three weeks ago. My father helped me find a pipe that fit, and I dug a new hole, poured concrete, set the pipe and re-planted the rack.It's the handiest I've been in a couple of years.)

By the time I was done, he was ready to go upstairs. We played "keep the baby away from the fan" for a little while, then he wanted to sleep. I brought him inside, and we accidentally woke my wife a little bit. I laid the baby down next to her, waited until he fell asleep, then went back inside to watch tv. Sleep was not coming, even if I was tired. She came out a few minutes later and told me to go sit with the baby - the room was air conditioned and I was overheating, plus he wasn't wedged in with pillows.

I fell asleep about ten minutes later.

She takes such good care of me.

Monday, July 7, 2008

Now I'm really worried... (FUNNY)

So, when The Boy and I lay down for a nap (I'm still selfish and protective of my napping buddy; I love love love napping with the baby), I'll usually counterbalance his "crazy baby" time by putting something on the television. Usually, it's a DVD, with the sound low & subtitles on; it's usually a program that doesn't have high "baby interest." Right now, I'm watching episodes of Heroes (season one) and Battlestar Galactica (season 2.5); these shows have a lot of talking and exposition, meaning boring for babies. So, we're both happy.

Yesterday and today, I put on The Beavis & Butthead "Mike Judge Collection," volume 3. I bought that for my wife for Christmas a year and a half ago, and we never sat down to watch it. Both days, the baby was absolutely hypnotized by the antics of Beavis and Butthead. That's terrifying.

Here's the picture, and the perfect reason why kids shouldn't watch television: cute baby, sitting up with his usual great posture, mouth hanging slightly open, significant amount of drool forming drops at his chin, watching "Beavis and Butthead."

Scary. REALLY scary.

Role Reversal

This morning, I got up and left for work, and my wife stayed home and took care of the baby and the house. It was a pleasant surprise to come home from teaching to find the house clean and a hot lunch prepared for me. I know that I'm not a male chauvinist, considering our normal role reversal this year; but, it was nice to come home to a hot meal and a pleasant family. That's what it'll be like in the fall, as I'll be home from marching band rehearsals around 6:30 or 7.

Thanks to those who have sent me nice notes and e-mails and facebook messages and such over the past weeks. It really helps us, to even read a quick, one or two line e-mail saying hello or somesuch.

Teaching today was quite surreal. It's easy to throw my attention into something like teaching, because 1) I enjoy teaching an awful lot, and 2) the kids at the summer arts program are really cool kids. But, it was an odd feeling. Nothing felt quite real enough for me... I was a little light-headed all day and kind of floated from activity to activity. I know that much of that is due to the fact that the future is so uncertain in regards to The Boy; day-to-day, things are odd and going to get odd-er. I'll get over it and get back into the swing of things; it's just going to take time. I feel a little ...?guilt?... for leaving the baby at home, but he's in the exceptional hands of my wife.

Argh. I wish it was 24 weeks from now.

And, just think - the hospital bills haven't come in yet.

Sunday, July 6, 2008

Are things different, now?

I find myself scrutinizing The Boy on a regular basis over the last couple of weeks, trying to figure out if there are any outward or inward signs that might have lead us to an earlier diagnosis of the Wilms Tumor. And, as all medical literature that I've read has told me, there are no outward signs. One of the symptoms of a Wilms Tumor is that there are no symptoms.

Little things. When he crawls, every other step with his left foot is not a crawl step; he kind of swings his foot flat on the floor and pushes with it, almost like an actual walking step. My wife and I hypothesize that that step helps reduce tension on his midsection and the tumor area. Certainly, since the surgery, he's been motivated to reduce the stress on the surgical incision area.

He's also taking more milk than we're used to him eating. My wife remarked that the two days after the chemotherapy were almost like when he was a newborn: waking every two hours to change and eating mommy's milk almost as often. He's taking naps a little more often, which makes sense. And, with the notable exception of Saturday night, he's been sleeping fitfully and in short bursts, like he's still in the hospital.

I'm nervous about the rest of the chemo and what's going to happen. I'm sad that he's going to lose his hair, and I'm nervous about things like mouth sores and constipation. I hope his personality and character don't change; I want him to stay a sweet, innocent, playful baby for a long time.

Saturday, July 5, 2008

Out of our minds...

Well, out of the house, anyway.

Today was a wonderfully boring day. The Wife took The Boy and her parents out to lunch, to meet my sister-in-law for lunch. She's staying in a nearby town at a friend's house, our house not having multiple guest rooms. They were gone for a long time - enough time for me to vaccuum the upstairs, straighten up the kitchen and a couple of other rooms, and catch a nap. I'm okay with that - I need my alone time, particularly when it's productive alone time.

We had dinner while we watched the end of the chorus competition, and congratulations go to the Masters of Harmony from Anaheim, CA, who edged the Ambassadors of Harmony from St. Charles, MO, by 7 points in a 3000 point scale. Amazing performances, but I like the Ambassadors a lot more than the Masters. No offense meant, I just do.

Then, we went to a neat little bar down the block from the comic book store called "Vienna 60" or something like that. It's a new place, owned by a cool guy named Carmine, and decorated in a 1960's fashion. The wife & I had mojitos, which were really nice. It's the first time the two of us have gone out without The Boy (who was with his grandparents) since, like, um... well, a long time. We played a game called "Fact or Crap," which was fun. I won, in triple overtime.

Then, we come home and find my son sleeping on his grandma... he's such a "ho." He'll sleep with anybody. We'll put him to bed and go to sleep ourselves. The in-laws leave tomorrow, and it's our responsibility to start chemo again.

Saturday Morning

Today was a good morning. The Boy slept through from around 8:30/9:00PM until 4:30AM! It was the first uninterrupted sleep that he's had since a week ago Monday night. Nobody was changing diapers, taking blood pressures, taking vitals, etc., etc., etc. The poor dear really needed it! He fell back asleep at around 6 for a couple of hours. Then, we walked to the diner and to the farmer's market downtown for breakfast and snacks. On the way home, he fell asleep in the stroller; he's still asleep downstairs in that stroller.

It's been a good morning.

Friday, July 4, 2008

Not a bad day.

Now, I know from filial experience (mother, father, mother-in-law & various aunts and uncles) that chemo is a cumulative thing. That is, the effects build upon each other over time, creating a miserable week 24-27. I understand that. That said, today was a pretty good day for The Boy.

After I finished blogging, he fell back asleep around 6:20AM. I put him back in his crib. At 7, the tv came on in the room - The Wife's alarm woke her at 3, mine at 5, and the tv at 7. My mother-in-law took the 1 AM shift. I nudged the wife and said, "It's your turn," and she dutifully changed the boy and brought him in bed with us.

(Which is sad all on its own. I'm used to nudging her and saying, "Please? Please? Pretty please?" That's how we got into this whole child-experience in the first place.)

At that point, we slept until 9:20! Hooray. We all needed it, that's for sure.

Boring morning. I mowed half the lawn, then poured a small concrete base for the clothesline-thing in my backyard - the old base rusted out last week. That's about a quarter or so saved per load... at a cost of about $2 of pipe and $6 of concrete. (They don't sell concrete in "itty-bitty amounts" at Home Depot.) Then I sat down with the wife and watched the first half of the Barbershop Chorus contest on the Society's webcast, which was lots of fun. I'm really, really proud of my boys in the Big Apple Chorus!

The Boy enjoyed the competition. He watched some, he played lots, he napped a bit. Interestingly, he watched the really good choruses and ignored the not-as-good ones. I think that he has accurately picked the top ten choruses, again. Silly boy. He had a good lunch and a good dinner, although I don't think he actually ate as much as he did pre-surgery.

We took him to the park after dinner tonight, and he had a lot of fun on the swing. Best part: we have a little "game" where I lean my face just shy of where his head will be when he's swinging. He always flinches a bit and closes his eyes, then laughs for such a long time. It's lots of fun, and he just doesn't get tired of it! I know I have to be careful, because I don't want to scramble those precious brains with an accidental headbutt. We were only at the park for about ten minutes, because he's just moving slowly right now, compared with pre-surgery.

He's asleep in his crib right now. The doctor told us that we don't HAVE to wake him up the second night for the 2-hour changes, so - this week - we're not. That might change, but ALL of us are exhausted and could use the rest. It wouldn't surprise me if he slept all the way through the night, but we'll change him (as per kind of the doctor's orders) if he wakes for his 1AM milk. We'll see.

I'm nervous, and I'm scared about the whole chemo thing. I'm terrified that he's going to suffer; he's already uncomfortable in little ways. I can tell; it's really true that you know your baby better than others do. I can sense that he's not 100% himself right now, that he's a little bit out of sorts. That's okay; I know that I'd be wacky if they removed my kidney and started chemotherapy on me.

I'm glad he's so young. I'm glad that it's this particular chemo. I'm glad that it was THIS tumor. I'm glad that he's under the care of these doctors. I'm glad that my friends and my family and my church and my temple have rallied around us. We're blessed in so many ways. I understand this.

I'm still terrified.

This is not going to be fun in December...

Right now, it's 5:30AM. The Boy and I have been awake for a half-hour; I woke at 5AM (first time the alarm on my alarm clock has gone off in a LONG time) to change him. The doctor's instructions were to change him every two hours for 48 hours after each chemo treatment. My wife and I changed him through 11PM; my mother-in-law took the 1AM shift, my wife the 3AM shift and here we are. The doctor did say that we'd only have to wake up through the night during the first night. The second night we don't have to specifically wake him up, but we'll change him when he wakes. Before, we'd double-stuff the diaper and not change him from 9PM until about 6AM. Not anymore.

This won't be an issue while my in-laws are here, because they're really, truly wonderful when it comes to stuff like this. Having my mother-in-law take one of the shifts REALLY makes a big difference. I know that both of us were really exhausted and collapsed after the 11PM feeding, and having to wake every two hours is a difficult concept. If you've never tried it, then try it for one night. Set your alarm to wake every two hours, then walk out of the bedroom and get a drink of water. Count to 30, then go back to bed. The first time isn't too bad; after 3AM, it gets difficult.

Still, only 24 more times (I think) until we don't have to do this anymore. We can get through that.

Entertainingly enough, he's crawling around the floor with a toy in his mouth. We've definitely got a puppy instead of a baby...

Thursday, July 3, 2008

Be it ever so humble...

...there's no place like home. We got home today at right around 4 o'clock, thank G-d. I'm really, really excited about being home. The week is starting to really catch up to me, as I can feel the exhaustion pushing at the fringes of my consciousness.

The doctor came with the chemotherapy drugs at right around 1 o'clock. The process from beginning to end was about a half-hour: saline syringe to flush the line, run the drugs down the line, one more flushing syringe. Anti-nausea drugs mixed with an IV solution, which took about 15 minutes to take. Then, one more flush, some antibiotics, and the IV was removed. The needle was removed from the mediport, and a band-aid was placed over the area.

What now? Well, we have to change his diapers every two hours until tomorrow (Friday) night. Further, we need to be gloved up to do it; the chemo drugs are toxic, and it comes out through his urine and feces. Sounds like fun, no? We'll take shifts tonight of four hours at a time.

We got home and laid around for a little while, then walked to CVS to get his drugs - anti-nausea meds, numbing cream and blood pressure medication. We stopped at the comic book store on the way back and forth. It was nice to see my friends there!

Afterwards, we've been eating dinner and straightening up the house. Stuff needs to be put away and filed nicely; the house is an absolute mess, still, but we have all weekend to make it better.

Visitors are more than welcome, but they will be put to work!

Couple of pictures...


This is a picture of the monstrous crib that The Boy has been sleeping in since last Tuesday night. It's huge, with a sign that says, "Weight Limit 350 pounds."





We call this picture, "Robo-baby." It's immediately after surgery, with all of the tubes and IVs and things.







Here he is in a more recent shot, still in the PICU. You can see the incision scar and the scar for the mediport on the top.

Any minute now...

...the chemo is going to start. I'm sitting here with my wife, my baby & my sister-in-law, waiting for the doctor to arrive for the start of the chemotherapy. It should go fairly smoothly; the drug being administered today is not necessarily the drugs that are going to give him the majority of the problems - just constipation.

Afterwards, we'll wait for a little bit so that he can be observed; then, we'll be discharged. That's really exciting, because I >>REALLY<< want to go home. I want my bed, my tv, my wife, my food, my baby's toys, my baby's crib, etc. Even though the air conditioning is better here than the p.o.s. air conditioning in my house.

Last night was not bad. The nurse woke The Boy at 9PM (he'd been asleep for over an hour) to check his vitals; she didn't mean to wake him, but she did. He had a bottle at 9, and a bottle at 10:15. Eventually, he fell asleep with me on the airbed - he just wasn't taking to the cage (errr.... crib) last night. He slept through until around 5:30AM, then drank two bottles back-to-back. He played and napped and played and napped and played and napped until breakfast came at 9:15. The Wife got back to the hospital right around 10, which was when chemo was supposed to start. It's 10:15 and no chemo. Sigh.

I just want to go home.

And, I want a donut.

Wednesday, July 2, 2008

Good news!

As my mother-in-law says, the concepts of "good news," "lucky" and "fortunate"
have dramatically changed over the past 8 days. We are lucky that we got the
tumor that we got; it was fortunate that The Boy is only 10 months old and we are
lucky that he's such a big, strong and good-natured kid.

We received a bit of good news today, regarding his treatment. He'll be in
chemotherapy for the next 24 weeks, with a 3-drug regimen. They're all "push"
drugs, meaning that they are administered through his mediport quickly with a
syringe, instead of dripping in slowly over the course of hours. The tumors are
stage I and stage II, which means that no radiation treatment is required. The
chemotherapy drugs will have some side effects, but they are mostly minor: hair
loss (I feel his pain, here), constipation and mouth sores. The only interesting
side effect is that one drug will turn his urine orange or pink, which does have
some entertainment value.

We start our chemotherapy regimen tomorrow (Thursday) morning, and he'll be discharged an hour or two later - meaning that, for the first time
since last Monday night, he'll sleep at home. We're really excited about that,
and we're very, very happy that things seem to be moving in a positive
direction.

Thanks for the prayers, hopes and well-wishes. We're still going to need help
getting through the rough patches to come, but the scariest part is, hopefully,
behind us.

Wednesday morning: D-Day?

Funny story: yesterday, The Wife gave The Boy some naked time. He was developing a little bit of a diaper rash, as baby butts tend to do. He sat in his crib and played for a little while, then suddenly stood up, grabbed on and peed through the bars of the crib onto the floor. Good thing the airbed was on the other side of the room! Update: I was just informed that he did it again. I'm glad he's got the whole standing-while-peeing thing down. One less thing to teach.

Yesterday, he got the needle in his mediport changed. This was not a difficult process: he was laid on his back, the old one (with gauze pads, which our oncology nurse told us was a no-no) was removed and a numbing cream was put on the area. An hour later, the new needle was stuck in. We had to wear surgical masks to get it on, because that's an area where infection would be BAD. We need to get used to the whole masks and gloves thing; when we change his diapers for a day after the chemo treatments, the chemicals are in his urine and fecal matter. That stuff can be REALLY bad for non-cancer people.

Today, the nurse will come back and discuss with us how we handle him around the chemo treatments - safety, health and sanitization. We'll record it on Garage Band and put it on-line for people to listen. I'll also use my cel phone to record it - it's got a great voice recorder, which I've previously used to record the A&R sessions at the barbershop contest.

My friends from the BAC sent a Vermont Teddy Bear. It's very, very cute. It's also been really nice to see my friends and ministers from St. Peter's Church; the fact that that community has adopted us so quickly since I've begun work there is heartening and gladening. I've never really felt part of a Christian community before; I never was close with the Catholic community I grew up with, and I grew away from the church for a long time after events in my life. I know I'm raising my son Jewish, and I truly enjoy my wife's temple community; but, I'm obviously more comfortable in the faith that I was born. Our rabbi has also come by a couple of times, which is cool. He's a neat guy, and rabbis are interesting folks. They're equal parts priest, teacher, minister and debater.

Our oncologist came in and told us that the Big Guy Oncologist (who's a lady in Chicago) has our son's tumor information. We're merely awaiting word from her, and we'll get the treatment information and things. Early indications are good and indicate a six-month treatment schedule. But, we'll find out more, hopefully today.

Ugh.

I'm really scared for the poor little guy; I don't want him to suffer.