Saturday, November 29, 2008

Weekend Update, with Musical Daddy!

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

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

Sigh.

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

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

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

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

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

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

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

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

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

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

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

Wednesday, November 26, 2008

How did this happen?



Yup. My boys sure do swim real good.

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

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

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

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

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

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

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

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

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

Boy. It hurts just thinking about that one.

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

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

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

Monday, November 24, 2008

Milestones

Cool thing:

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

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

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

The Waiting Game, again...

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

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

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

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

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

Barbershop Show This Afternoon

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

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

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

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

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

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

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

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

But, I digress.

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

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

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

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

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

Sunday, November 23, 2008

Little Pants

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

They are very cute.

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

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

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

Saturday, November 22, 2008

Giggle Man

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

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

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

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

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

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

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

Chubby Cheeks...

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

Sigh.

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

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

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

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

Friday, November 21, 2008

Evacuation Drill

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

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

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

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

Frakking cancer. Stealing one more thing from us.

Thursday, November 20, 2008

Fallout

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

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

There goes my iPhone. Sigh.

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

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

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

Tuesday, November 18, 2008

Holy cow.

Two-year chemo regimen.

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

Wow.

Our lives just took another 90 degree turn.

Wow.

Just, wow.

Quick Hit...

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

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

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

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

Sunday, November 16, 2008

Return to Normalcy

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

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

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

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

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

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

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

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

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

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

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

Friday, November 14, 2008

Family Time

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

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

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

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

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

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

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

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

Thursday, November 13, 2008

Life As We Know It...

Right now, there are toys covering every square inch of space in the living room, and I'm honestly thrilled about it. The only way that particular spread could possibly happen is by the whim and effort of a determined baby, and that's a hopeful sign. Last week, and early this week, he would not willingly move or sit on the ground because of the pain. He'd play quietly with a couple of his cups, or something like that, but that would be about it. If he's really moving around - like a normal kid - that makes me feel a bit better about the whole thing.

Granted, my house is a complete and abject mess. There are dishes piled up in the sink. (Not mine, because I haven't eaten a meal in the house since lunch on Monday, and it's Thursday night.) There is laundry in several different places, and none of our bags have been unpacked from the hospital stay. The bathroom has not been cleaned in a week, although I did clean the kitchen last Thursday night when I stayed over from the hospital. The rug has been vaccuumed (our little area rug), but none of the other floors have been cleaned. There is a thick layer of dust over everything, and numerous sticky spots on floors and tables and countertops. The lawn is covered with leaves, and dead flowers hang from unpruned plants in the garden. It's frustrating to me, because I don't feel like doing a goshdarned thing when I get home from school.

I'm a little concerned about this cough that I picked up at the hospital. I've been a lifelong asthmatic, although I'm starting to think that it's a different form of asthma and breathing difficulties than what I've been treated for. With luck, the new asthma doctor that I'm seeing on Tuesday will be able to help me find a more appropriate management plan. But, my cough right now is concerning to me. It's a tightness across my chest, which leads to a wracking, painful, useless (because it doesn't move anything around or help me at all) cough. I'm almost positive, at this point, that it's turned into bronchitis. I'm afraid, at this point, that it's trending towards walking pneumonia.

Wouldn't that be perfect - trading my son's hospital bed for my own.

I'm continuing to get frustrated and depressed at the progress of The Boy's treatment and development. The cancer thing is starting to feel more and more like this great Sisyphusian stone: everything we think that we've rolled the stone up the hill, the gods knock it back down again and force us to start over. I'm honestly happy that this surgery is done. It feels like a milestone: it feels like, for the first time, The Boy is cancer-free. Real life then intrudes. How long is it going to be before we spend another week at the hospital, because he gets sick? How long is it going to be before we're sitting in a closet at the emergency room again for 8 hours as The Boy gets fluids and antibiotics? How long is it going to be before we have a scan that the doctors are "concerned" about?

It is never going to end. I understand that. Even when the cancer is over, we're going to have Damocles' sword hanging over our heads: we'll have a healthy, beautiful baby boy that can be struck down at a moment's notice, with no symptoms or warning. This cancer could recur suddenly and mercilessly. This cancer could travel, mutate, spread.

Am I a bad person, to have such a vivid imagination? Am I wrong to be afraid that I'm going to spend the majority of the rest of my son's short life in one hospital after another? ...going from one round of surgery to another? ...taking test after test after test and scan after scan after scan?

There is no way in hell that I should outlive my son.

I know that his histologies and pathologies are favorable, and there's a greater-than-likely chance that, once he's done with his chemotherapy, he will remain cancer free until he dies in bed at the ripe old age of 96, hopefully in bed with a 25-year-old stewardess. I know that there are plenty of people who have had what he had, at younger and older ages, with more severe damages and treatments, that have survived.

It's frustrating to me. "Have survived" and "living a normal life" are not things that The Boy should have to strive for. Those should be rights. He shouldn't have to live with this hanging over his head. He shouldn't have to live with bimonthly (or so) CT scans and ultrasounds for the rest of his life.

More later. Gotta go - just ran upstairs to grab The Boy so The Wife can actually sleep tonight.

Wednesday, November 12, 2008

Well, that just sucked.

Decent day today. My wife took the first half of the day off, I took the second half. Our school days don't exactly coincide, so I had The Boy with me for a period and a half. Well, one period, technically. He sat on my lap and made occasional faces at pungent run-throughs of music. Afterwards, I showed him off to the various teachers and administrators at my school so they could see how beautiful he is.

We went to CVS, and one of the medicines - clonidine - requires a suspension solution. The CVS pharmacy has to special order it, so they wouldn't have it until tomorrow. This was told to me after I waited ten minutes for them to finish up the medicine (after I was told on the phone that it was waiting for me), then another 10 minute wait while they called around to find somewhere.

Kudos to them, however, for finding a pharmacy in Chatham - the Liberty Drug on Main St. - that mixes the stuff. So, I called and faxed and placed the order. Then, he and I passed out cold for a little over 2 hours.

When my wife came home, we lounged around together for a while. After watching an episode of House, we went to Chatham to pick up the medication. Clonidine is a blood pressure medication that The Boy will be on until the stent is removed from his kidney. I told the pharmacist - nice guy, named Dana - about The Boy's surgery last week at CHoP. He made the usual platitudes about CHoP, which I neutrally agreed. "...but, I don't know why they didn't tell you about us. We're on a list that they have."

Yet another piece of information that CHoP left out. Man, the hits just keep on comin'.

We also found out, right about that time, that our babysitter isn't available for the next two days. My brother and his wife didn't called us back tonight, so they're out. My father can watch The Boy without a problem, but - since he doesn't do diapers - he's out as a solution. Band Guy's wife is at class until late and didn't call back, and our other buddies have a cold being passed around the house and don't want to give it to The Boy. Great. The Wife will take tomorrow, and I'll take Friday.

Friday, Dr. Narang from the Valerie Fund Center wants to see him for an ultrasound, so they can make sure that the fluid buildup in the surgical arena is dissipating as expected. If not, they can't give chemo until it's gone - bad idea to leave potentially bacteria-filled fluid in a sensitive area of the body immediately after surgery, then knock out The Boy's immune system with chemo. She also told us that they would be consulting many doctors on the Wilms Network before changing his chemo, as we expected.

Man, she talks fast. I'd pay a hefty amount of money to get her a few drinks and see what she'd say. I'll bet that she is hilarious - like, Chris Tucker in Rush Hour kind of funny.

Tonight was not fun. Well, the burritos we had for dinner were awesome, thanks to the WHS marching band for the gift certificate. We gave him his Norvask, and he puked it up with his dinner. The rest of the drugs were a real struggle to get down his throat - like, hold him down, hold his nose and squirt the drug in until he swallows. I feel dirty after doing that.

Still. I know it's for a good cause. I'm going to bed, though. I'm exhausted.

Tuesday, November 11, 2008

Haven't Lost My Mojo Yet...

Over the past couple of months, I've occasionally found myself growing quite frustrated with my inability to soothe The Boy when he's needed it. It's been a source of anxiety for the three of us, that The Boy needed Momma to soothe him about 85% of the time. Intellectually, we know that it was just a phase that all children go through - kids in the first few years tend to pendulum back and forth between the two parents depending on their immediate emotional and physical and intellectual needs. So, whatever, I knew the worm would turn eventually.

Today was a nice reminder that I am, indeed, a comfort to my child.

The Wife left me & grandpa with The Boy at about 8-ish last night. At 10 (when I was dozing off, sitting in the crib with TB), grandpa left, and I was left alone with a reasonably mobile, definitely alert baby for the first time in a while.

No problem.

Interestingly enough, he didn't nurse at all at night - I mean, he took no milk until the next morning.The ultrasound went well - he complained loudly about the test, but he held his body very, very still and allowed the doctors to do their thing. Since we were unhooked, as I said below, we wandered for quite a while before settling in the atrium.

For the rest of the afternoon, he napped or dozed or just hung on me like a little monkey. All he needed from me was to be with me: he'd read over my shoulder (so to speak) or watch TV or just stare off into space. It was a really nice feeling, and it was comforting to me to know that I could help him feel a little bit better.

Even tonight, when we got home, he boosted himself off of my wif'es lap to come to me, and "crazy baby time" was divided equally between the two of us.

Darn, it's great to be home. Even the painful, wracking asthma cough that I've developed feels a little bit better. We're both taking half days from school tomorrow - The Wife the first half, me the second - so that we can sleep some extra and snuggle some extra. Personally, I intend to walk down to the comic book store with The Boy, then walk up to the post office and CVS, then walk home - a nice, normal walk around town for the two of us. Depending on the weather, of course - it needs to be sunny and reasonably temperate.

I'm exhausted. Good night. Tomorrow, I'll unpack, figure out the next stage of The Boy's treatment, and put my life back together. Well, the latter will wait until Thursday.

Cute pics...


Taken last night - pictured is me & The Boy, with me trying to share some food with him. I think it's just a little big of rice.









Trapped in the crib!!!








With The Wife & our Chai Lifeline representative

The Light at the End of the Tunnel...

...in this case, is NOT the oncoming train.

That mystical, mysterious pathology report was given to us by Dr. Comcast this morning. Well, more precisely, it was given to me, because The Wife was at work and The Boy was sound asleep in the special chair / carriage thing in which he was riding.

It turns out that the pathology report merely revealed that both tumors were "treated Wilms tumor" - meaning, the same tumors that we knew and loved and were already treating with chemotherapy. The cells showed changes due to chemotherapy, which is what we hoped to find. Translating a bit, this means that the tumors were not new, resistant, or different stages than what we had before.

So, while the results are still going to out on the national Wilms network, we are not currently expecting an immense change and / or intensity increase in his chemotherapy. I'd be shocked if there weren't another drug or two added in, don't get me wrong - but this is better than it could have been.

As I told my brother, some times it really sucks to have a vivid imagination and a plethora of inner creativity.

The Boy and I had a sausage party at the hospital last night - no wimmen, thankyouverymuch. Girls have cooties. It went surprisingly well, considering that he was initially irritated that he couldn't nurse in the middle of the night (he hates picking hairs out of his teeth). He got over that quickly and didn't want the bottle of milk that I offered him several times in the night.

The ultrasound was 8AM this morning, which means we left our room at 7:45. They unhooked him from his tubes, leaving just the port access. The ultrasound was fairly painless - he was more irritated that strangers were touching him than anything else. Afterward, the nurse said, "Take your time getting back - we don't have to hook him back up until his antibiotic at 10." So, he and I got lost for a little while.

We went up to the Connelly Center on the 8th floor, which is a nice library / media center for the kids at the hospital - from babies to teens. They had a bowl of fruit there, and The Boy tore into the grapes like he was on a mission.

(Cue the Blues Brothers soundtrack: "I'm on a mission from G-d.")

When he was done with the grapes, he endearingly held onto the last half-grape that I had given him for the ride down the elevator. We walked a bit before settling on a seat in the middle of the atrium area of the 4th floor, where we shared a bagel and some other stuff before he fell asleep and Dr. Comcast gave me the status report.

When he woke up, we finished lunch, had a bottle of momma milk and changed into some new clothes. Now, we're both sitting in the crib. He's napping (sort of) and I'm blogging. His face is pressed into my chest, and his right foot is alternating between resting on the crib bed, resting on my leg, or kicking us both. Whatever.

Second best news: if the ultrasound doesn't show fluid buildup, we're going to go home!!!!1!!!11!!1!

Monday, November 10, 2008

Funny school story... #2

Why teaching middle school is funny:

Here's something one of my students said to me. If this student were in high school or college, it would be funny for a completely different reason:

"Musical Daddy, I got crabs this weekend! 8 of them! One of them has a claw as big as my thumb!"

Frustrating, yet again...

So, the surgery team stops by & shakes my wife awake by grabbing her leg. She's irritated about this, but it doesn't particularly surprise me. She can be really, really difficult to wake up, and the less sleep she has, the deeper the sleep. Earlier that same evening, I called her name in a classroom-teacher voice four or five times before she woke up and came to help me with The Boy. It is more than possible that they called her name out and tapped her on the shoulder several times before resorting to more aggressive means.

Anyway, they told us that the drain bulb would be removed yesterday. Then, as per usual, they competely forgot about us for the rest of the day. In the early afternoon, my wife noticed that there was some leaking around the edges of the drain tube, so she had a surgical resident paged. The guy came, looked at it, and told us that that problem would be solved when the bulb was removed later in the day. When I arrived at 7:30, the drain was still in.

I flipped out in the direction of our nurse - not at him, because that's mean, but in his general direction - and told him to get a surgical team doctor down here or get me a solid reason why before I hunt one down myself... and I'm likely to be less polite about it if I have to do it. The surgeon was there within a half hour, which is - by far - the best response time of our stay in Philly. He told us that the bulb was still working, the leakage was a weird thing that had explanation or recurrance, and while the bulb was still working, the drain tube wouldn't be removed. Okay, I understand that.

My next question was: why did we have to find out by "accident" that The Boy had a CT scan scheduled for Tuesday - and that there was no way that he would be released before then? The doctor (this same guy) had let it slip out in conversation with my wife earlier in the afternoon. This procedure is standard and was scheduled at the same time as the surgery - but, nobody told us. Not that we expected The Boy to be coming home quickly (particularly considering the pain he was in as late as Friday night), but it would have made our lives a LOT easier at the beginning of our stay to know that it would at least last through Tuesday evening.

This seems to be standard operating procedure at CHoP: no communication, slow response time and vague, imprecise answers. It's frustrating as heck.

Interesting note: yes, my sister-in-law works at St. Barnabas in the accounting section. But, two to four times per day, a patient advocate comes in and asks us about our needs. At CHoP, we've been there for seven days now and never once spoken to a patient advocate - and this was after I sent that scathing e-mail to them earlier this month.

Be careful where you send your kids, folks. This place has a great reputation, for sure. And, there are some wonderfully talented doctors and nurses here. For the most part, we have seen laziness (our nurse Saturday afternoon came into our room twice in her 8 hour shift - the rest of the time she spent chatting and reading the internet at the nurses' station), sloppiness (the lack of attention to the NG tube), lack of communication and basic unprofessionalism and lack of consideration for the patients.

Saturday, November 8, 2008

w00t!

The Boy has been cleared to start eating again. So, slowly and slowly and slowly, we'll start to introduce clear liquids and breastmilk back into his diet. He's a little booby monster, and I really believe that 5 minutes of nursing will provide the same effect as a morphine shot.

He nursed for a few minutes, then promptly fell into a deep, restful sleep. Hooray!

Chemical Warfare

The Boy has the worst-smelling gas that I've ever had the misfortune of experiencing. This is called, "Here's what's been percolating in my colon since Monday night, Daddy!"

Yuck.

Lunchtime...

I just inhaled one of the huge meals that the Chai Lifeline brought for us, and I'm seriously debating about finishing the half meal that my wife left from her lunch. She's having some stomach issues (hmmmm.... could they be stress-related? Naaaaah.....), so she didn't eat much. The nurse (and a nursing student, a dude, who is shadowing her for the day) came in and was helping The Wife give him his medicine (a bladder anti-spasm medication), change his sheets (the stupid drain bulb keeps opening and leaking on the sheets every time The Boy or I sit on it), give his head and arms a sponge bath (lucky kid - our nurse - the female one, although the male isn't bad - is cute) and take his vitals. His temperature is the lowest that it's been, although his blood pressure is concerningly high.

He's still getting IV nutrition from a bag that looks like it holds my favorite soda, Diet Mountain Dew. It has that particular neon green color that doesn't actually exist in nature. Let people mock me as they may, but I've long extolled the virtues of Diet Mountain Dew.

Since he's unhooked from all of his monitors, I'm going to take him for a walk around the floor. He's not sick-sick-immune compromised, so it's okay for him to wander around a bit. I'll get a wagon, and pull it with one hand and his medicine tower (with the IV antibiotics, two types of IV nutrition and a third bag of fluids) with the other.

He's so cute. The nurses are already in love with him, and they've just met him. I keep telling him that he's a chronic flirt, but nobody believes me.

Mr. Up All Night

Back at CHoO for more of the same old, same old. My wife has been asleep since around midnight. I got an hour or two sprinkled throughout the night, with the rest of the time devoted to pain management and infant care.

What the heck am I doing wrong? Why can my wife and mother-in-law get a decent amount of sleep with him, and I have to spend the better part of 40 minutes per hour with a screaming, in-pain baby? Why do I get these eyes from him saying, "Daddy, make it stop! Fix it! Get me food, too, while you're at it."

How frustrating. At least this time, the pain meds were delivered on time. I'm frustrated with the NG tube, because I think that it is causing the problems: baby is starving, cries because he is hungry, works himself into a lather, injures himself, cycle starts over again. Three yards forward, 2 yards 35 inches back.

Why do I have the vague, nagging suspicion that they screwed something up during the operation which is causing the dramatically increased recovery time? By night four last time, he was crawling around, eating and carrying on like the cute little imp that he is.

Friday, November 7, 2008

On a clearer mind...

The world looks a lot different after two consecutive days of 7 hours' sleep, let me tell you. It's actually pretty amazing. I still have a nice stress headache working right at the base of my skull, but I'm considerably less grumpy than I have been.

I'm not saying that I'm not grumpy, mind. Just that I'm less grumpy.

The nurses at CHoP have been fine. I don't mean to imply that they've been negligent or inattentive or anything. They've been sweet and knowledgeable for our entire stay. Granted, they've paid a little more attention to our roommates, but that's to be expected in the current circumstance. Our first roommate was the youngest of three kids, and mom had to go home at night to take care of the other two and go to work in the morning. That left the baby (5 months old) by herself for a lot of the time, and that's really, really difficult for everyone. I know that if we had left The Boy alone at 5 months old, he would have screamed like a banshee for the entire time we were gone. Our second roommate, who came in on Thursday morning at 1:00AM, was a late-night admission, so the mother got no sleep at all until she fell asleep from 8 o'clock to around noon or 1 o'clock. The annoying thing about that was the people that would call the room telephone and let it ring 12 or 13 times, disturbing everyone except the sleeping lady. (Telephones wake The Boy up quite easily.)

Folks, if you're calling a hospital room and they don't pick up after three or four rings, hang up. Particularly if there's a roommate in the room.

It just reminds me how lucky we are, to be in a situation where one of us, always, can drop everything we're doing to spend time with The Boy at the hospital. We never have to leave him alone, and we never have to leave him unsupervised and under a nurse's care. The nurses at St. Barnabas and at CHoP are caring and attentive; but, they miss stuff. They miss discomfort. If attention isn't drawn by someone else, they can miss vomiting and pain for a long time. They can make mistakes when it comes to medicines and doseages. If someone is there, then those mistakes are lessened or eliminated, and important stuff (like The Boy puking up stomach fluids because they weren't suctioning them out for 12 hours or so) gets handled quickly and efficiently.

I'm not casting judgement on those other two mothers - Faith's mom (who had two other kids) had to take care of the rest of her family and her job. Jada's mother probably was running on pure adrenaline for the 12 hours prior to Jada being put in the ICU. I'm just thanking G-d that we have the option of staying with The Boy the whole time.

The advantages CHoP has over St. Barnabas: Playstation 2's in every room; little cans of soda and Oreos in the food pantry on the hospital floors; diet Dr. Pepper in the soda machines; my cell phone actually works; Chai Lifeline r00lz. Advantages St. Barnabas has over CHoP: less bureaucratic issues (by a LOT); more friendly doctors and nurses; free parking; 90 minutes less drive; the child life specialist stops in daily and says hi, even in ICU; the patient representatives stop in and say hi a couple of times per day, even in ICU; sister-in-law in accounting and one of my chorus guys' stepmoms works in the main building. Plus, the Valerie Fund Center totally pwns anything at CHoP that I've seen.

(Definitions: pwns - pronounced like "owns" with a p in front of it, "powns," not like gowns - means totally dominates, kills, wipes out. Usually used by online gamers to describe whipping up on somebody. r00lz - pronounced rules - stronger version of the word "rules")

I want to get the doctor's appointment over with quickly - although it will be nice to have access to a new asthma doctor, I hope. I love Dr. Weber in Glen Ridge - he's great, but that's 50 minute drive in a time where I can't drive there. I'm having breathing issues this week (thanks so much, change of seasons) and would like to stop them.

I'm nervous about marching band, because I've been gone for the better part of a week. I don't know where they are or what they're doing. I don't want to be a sink, particularly in the all-important last big rehearsal before championships.

Temporary Trip

I'm at home right now, taking care of business. I went to choir practice tonight, and tomorrow I have a doctor's appointment and marching band. Good thing about the doctor, because my old asthma doctor iant refilling my prescriptions anymore. I've grown rather fond of breathing.

The Boy is in a different room. When I left, he was sitting up and doing some playing. The NG tube is still in and will remain until his stomach starts working. The pain management seems to be better. He is a little more comfortable, and they reduced his morphine drip twice today. Last time, they stopped his pain meds 24 hours after the surgery, but this was more invasive. Meh. I'll be happy when the tube is out and he is off medication completely.

Then, the wait starts to find out the changes to his chemo.

No word on when he's coming home yet. Best guess is Saturday or Sunday.

Wednesday, November 5, 2008

Headed "Home"

...no, not really home. Just to the apartment which is temporarily serving as home base for the week. My wife and I have the night "off," because Grandma is staying with The Boy. Cell phones are on in case there's a pain management decision that needs to be made, but the addition of valium to the morphine seems to be doing the trick for the moment. The problem, we've noticed, is the muscle spasms that were causing him pain. With the valium, there are no spasms.

I expect that I'll actually get a solid six or seven hours' of sleep. I'm planning on heading north tomorrow for choir rehearsal / doctor's appointment / marching band rehearsal / check on the house / buy a power adaptor for the ipod thingie.

Naptime!

At 10:30am, I left the hospital with The Wife and slept for four hours at the apartment that the Chai Lifeline is donating us for the duration of our stay in Philadelphia. It's a really, really nice apartment - three bedrooms, tv in the living room, washer/dryer in the bathroom area & a kitchen with snacks. The only complaint I have is that the headboard and baseboard are six feet apart, and I'm six foot-two. Whatever - it's still better than that fold-out chair-thing that is in the hospital.

While I was away, they took the epidural tube out of The Boy's back. One less medication... he's still on the morphine (a continuous drip because of his discomfort), though. The Wife and her mother have been holding him for the last hour or so. He seems more alert and more - well, he's not normal, he's not even close to acting normally, but he seems more alive and less like the Matrix-baby he was last night.

He's still got the ng-tube in, which is the tube that goes through his nose and down into his stomach. It's one of the hardest things about his recovery, because it's the least comfortable thing, which is saying a lot. Hopefully that will come out soon. It's there because the whole gastric system goes to sleep when it's manipulated like it was during the surgery, and they don't want acids to accumulate down there.

Poor little man. This is a harder recovery than the first time. The Pain Team doctors were pretty cool, though - one dude stayed with us for an hour while we were stabilizing his pain management, who is in a similar life situation as I am - young wife, five month old baby, etc. I think they might have gotten it right, finally!

5:40am

...and I'm still not asleep. I haven't been up all night, but it sure feels it. I've caught ten minutes here, twenty minutes there, five minutes elsewhere, etc, for the entire night. Not to mention the always popular "get the baby to sleep just in time for the team of doctors to wake him up again," which happened in the time it took to type the first sentence on my iPod touch.

What's the difference between and oral and rectal thermometer? Taste.

I'm not impressed with the picu care at CHoP.

Edit, 6:03: the nurse just put him back in my arms. All is right in the world.

deepest, darkest night...

it is now 3:10am, and I am more awake than I could be. The Boy alternates a half hour or so of sleep with ten minutes of fussing and screaming. The cycle then repeats. The hardest part? Standing next to the bed as he screams in pain, waiting for the Pain Team to approve more medicine for him. Most of the time, he is soothed by seeing me near him and holding my hand. Sometimes, he isn't. He puked up a big chunk of mucous, which was exciting.

I wouldn't wish this on anyone. This just sucks. No way should he have to suffer like this. It is wrong on every level. Thank G-d my wife is sleeping.

The nurses have been okay - very nice to us. The resident is - well - a resident. We were all young, slow and stupid at one point. I hope they get here with his new meds soon. Watching him scream until he passes out isn't as much fun as it sounds. Matter of fact, it pretty well blows.

Tuesday, November 4, 2008

He's baaaack...

The Boy is out of surgery and in his room at the PICU at CHoP. He's still asleep from the sedation, and he's got a drain tube and an epidural tube still in him. (In other words, no cavorting in hot tubs for a bit.) There isn't space in our room for the inflatable bed - we're sharing a room with a beautiful five month old girl named Faith.

In other words, it's going to be a long, long night for me. Not a bad thing, necessarily, because I'm interested in following the election results. Plus, I have enough tv and movies on my iPod that I can entertain myself all night long. I'll sleep during the day tomorrow.

Here he is:

liveblogging the day...

Click on the title on the blog entry to get the rest of the story - this has been updated a whole bunch of times!

9:40am: We've arrived and checked in. The Boy is graY with hunger, but we can't give him anything to eat or drink. Sigh. Traffic was light, and we made great time. Voting went easy this morning: our district had no line, while the other two districts in town were wrapped around the gym twice. I guess our area has no civic responsibility. Squeezed the car into a spot far too small. Anticipating a long, scream-y wait. Family won't be here for an hour, so it's just the three of us.

11:20am: in a secondary waiting room, waiting for exams by nurses and doctors and for lab work to be checked over. He is REALLY angry because he is starving and tired. No word on when the surgery actually will happen. I haven't had breakfast yet, just a muffin at Starbucks, but I can't imagine eating until The Boy goes in for surgery, because it would be cruel to eat in front of him.

12:40pm: stuck in the second waiting room because there is a code red or fire somewhere in the building. When the light stops flashing, The Boy will be taken. We've met all his doctors and he has been given his loopy pills. Hope they don't wear off before he leaves.

1:25pm: He was taken in around 20 minutes ago, and we just finished a lunch donated by a local Jewish charity - bagel, pastry, pasta and salad. My brother, father, mom-in-law are here with us. We expect a 3 hour surgery.

1:55pm: the stint in his kidney is in and the epidural path is set. There is a nurse that circulates around theopsratinf rooms and relays info to the families.

3:29pm: the organization that bought us lunch is called the Chai Lifeline, a nationwide charity organization. They are also lending us an apartment to use for the week - it's a 3-bedroom apartment that can be used by up to 3 families at a time (one bedroom per family, natch). Noone's there tonight except for us. There's also a secret Jewish locker upstairs that has snacks, which we now have the combination for. (I knew that marrying into the Jewish Conspiracy [tm] would be a good thing for me & my family!!!) Anyway, we're still waiting. No new word, which - I guess - is good news.

3:35pm: The nurse came by. They have him opened up - mostly - and are sending lots of samples to the labs, but they have not accessed the kidney area yet. Sigh.

5:19pm: He's out of surgery and okay, thank G-d. They removed the two tumors: the regrowth was roughly pancake-sized, the tumor on the right kidney very small. He's still asleep right now, and we'll see him when he's done. He'll be in the icu tonight (at least). I'm relieved - to be honest, I was terrified that he would never make it out of the operating room. Not sure when I can see him, but just knowing that it'll be soon (relatively speaking) is comforting. Dr. Comcast came out and told us the good news. We won't find out anything about the tumor regrowth for a while, and in six weeks, we'll have to have the stint removed from his kidney. That might mean a trip back to Philly, or they might be able to do it at St. Barnabas. We'll see.

Sailing to Philadelphia - fo' REAL reals, yo.

We're heading down in about a half hour - I'll load the car, we'll go vote, pick up breakfast and hit the road. Our "report time" in Philly is 10:30AM.

The cynic in me says it's 10:30AM for a report time to schedule the surgery. Watch. They'll screw us over one way or the other. Watch me slug somebody (metaphorically speaking, of course - I would never actually lay hands on another person 'cause it's wrong and all that) if that happens.

Small breakfast, though. I'm up about 10 pounds since the start of marching season. That's what happens when you eat like crap and don't exercise and are on the wrong side of 30...

Argh. Nervous. Didn't sleep well or much last night. Ready for the surgery to be over so we can proceed with the rest of The Boy's treatment. Scared about these people gutting my kid like a fish.

Makes the election seem small and unimportant, doesn't it?

Monday, November 3, 2008

Once more, into the breach...

Here we go again: I'm preparing to be absent from school for the next two days, and I'm preparing to move my entire life 120 miles to the southeast for an indefinite length of time (less a doctor's appointment and marching band on Friday). This all is contingent, of course, on The Boy's bloodwork, which will be done at 1:30 or 2:00 this afternoon, with counts coming back in at 5-ish. To make matters more interesting, he's still got a nasty cough, runny nose and achy body from the cold he's been fighting since the middle of last week.

What does this mean? I give the surgery a 40% chance of actually happening on Tuesday. I think it is more likely that, because he's sick, they'll push it back a week - or check him into the hospital until he's better, then do the surgery - or do the surgery anyway and hope no infection sneaks into his body. And, we won't find out until close to dinnertime.

We've had our bag packed for the better part of a month, at this point. I have my "reading" bag ready to go, and the computer bag is also ready to go. Before we leave, I want to make sure that any dirty dishes are in a running dishwasher and all trash has been taken outside. The heat needs to be turned down to around 55 degrees to save heating oil, and new sheets need to be put on the bed (figuring that we're likely to be stumbling home, exhausted beyond belief). Also, the mail and the newspaper need to be stopped indefinitely (again), and my neighbors alerted to keep an eye on the house for me.

All of which will - more than likely - turn out to be a moot point, when - after dinner - we'll likely have to call everybody and tell them that it's all off, again, and to be ready next week or the week after, when they'll do the surgery.

Painful.

Sunday, November 2, 2008

Just a Boring Sunday...

...which is, in all reality, exactly what we wanted today. We forgot that today was fall back day, so we woke up at the normal Sunday time (7:45AM, which was 6:45AM) and bemoaned that we didn't have enough time to go out to breakfast before my church gig. Granted, it isn't a good idea to take The Boy out while we're waiting for him to heal before the surgery, but we like going out to breakfast. When I left the house at 8:15 (7:15) for a 9:30 arrival at church, I realized 20 minutes into my drive (don't ask) that the clocks had gone back. I called The Wife, she and I decided not to take The Boy out, and I went to breakfast by myself.

The Boy played, then napped, then I got home. My wife went to CVS and to pick up a sandwich, and The Boy and I played for a bit until she got home. We ate, we snuggled, we played, and I left for Evensong mass. He napped, she cleaned a bit, and I got home for dinner. Now, he's sitting in his chair, eating some Panera Bread sandwich (we have no food in the house and don't want to cook until we get back from Philly) and watching the football game - Giants are up, 28-14, in the middle of the 4th quarter.

Boring, boring, boring. That's good. He needs it. We need it. >>I<< need it.

In a few minutes, he'll be done and we'll let him play for a while. Around 8 (an hour from now), we'll start putting him to bed. At 9, I'll do my bedtime thing in the (likely vain) hope of getting to sleep around 10. Then, Aunt M will take The Boy to the doctor for a 1PM appointment tomorrow, where we'll find out if we're actually having surgery.

Sigh. It's not like our lives are on hold or anything.

Saturday, November 1, 2008

Insight into my psyche

As I was lying on the rug in the living room, gabbing with The Wife, I looked up at the ceiling and realized that my body was splatwd out in rough approximation of the ceiling fan. I speculated aloud, "If my neck were longer and I was hung from the ceiling from my belly, I could be a ceiling fan."

She responded, "Llamas have long necks."

"But they make lousy ceiling fans. Still, that would be funny. See if there's anything on YouTube under 'spinning llama."

At that point, she dutifully called me "special" and continued her reading.

There isn't, which was very disappointing.

I still maintain that spinning a llama suspended from the ceiling would be entertaining and a good use of time.

Just a quick visit...

Turns out last night was just a "quick visit" - we left for the hospital around... um... 8 o'clock-ish and got home around 1:30AM. They put us in that "iso" room again, which is nice - it's got a couple of doors which cuts the noise out from the surrounding rooms and it's got its own bathroom. They gave him fluids (like, 250 mL in an hour) and some antibiotics, took a blood count and let us hang out. Eventually, we found out his ANC was over 700, and they sent us home. We passed out around 2 o'clock and woke up close to 9:30.

It was a hard night. He puked up huge amounts of fluid and food, all in an interesting florescent green color. It wasn't quite Mountain Dew green (nothing in nature is that color), but it was a different color than he expected. My wife was worried, while I thought it was pretty much just mucous. All night, he was mewling with aches and pains and sick feelings, without being able to make himself comfortable in any position. When we got home, we gave him Tylenol and more Zofran, and he eventually fell asleep and remained so until after 9:30.

Today was easier. He napped on my wife for much of the late morning, until I got home from marching band. He and I went for a nice, long walk around the neighborhood, culminating in a fun little romp in the front yard grass. Tonight, we had burritos from DeliveryNow.com, and we're watching "The Emperor's New Groove," a seriously underrated Disney flick from the early aughts. Then, we'll watch an episode of House, before I spend an hour doing housecleaning.