Friday, February 27, 2009

Change of plans... or zzzzZAP!

As The Boy was in the Valerie Fund Center, getting his counts checked, our oncologist got a note from the Big Kahuna Wilms Tumor guy that he wants The Boy to get radiation instead of chemo. So, we're off of chemo for this weekend. We have a meeting Monday morning with Dr. Chen Lu to discuss his radiation.

(For those that don't get the reference... Chen Lu is better known as the Marvel Comics villain, "Radiation Man." That's probably how I'll refer to our radiation guy for a while.)

My understand - and, Logical Mommy, please correct this & edit the post if I'm mistaken - is that we'll be getting radiation for a week or so. Allegedly, the biggest potential side effect is a change in his growth pattern in his midsection. Great. I've got stubby little legs because of my asthma steroids, and The Boy will have the reverse. Sigh. So much for giving him my hand-me-down suits. The day-to-day side effects should be less than the chemo, which is good. This will not cause a change in his chemo regimen's length or severity. Chemo will continue as planned.

I'm scared. I really am. I know my father had a good experience with radiation - it saved his life when he fought with prostate cancer. For some reason, this is far more terrifying than the chemotherapy.

Thursday, February 26, 2009

Communication is Essential

Turns out, the Tumor Review Board never even got around to discussing The Boy's radiation possibilities this week. Sigh. If that was the case, then why didn't they tell our doctors - and why didn't we find out about this earlier? That's just annoying and inconsiderate. I mean, it's not like we have to move OUR ENTIRE LIFE to Livingston for five days at a time or anything.

Whatever. What's done is done. The Boy will be at the Valerie Fund Center tomorrow at 9AM for counts. Assuming his counts are acceptable, he will be admitted and chemo will be drawn. This weekend is the five-day, the cytoxin and the etoposide. Grandma is driving to the hospital from Pittsburgh, bless her heart. Grandpa will meet The Wife at the VFC at 9AM to help out.

Biggest deal? Getting the stuff from the car to the hospital room. Here's what we're bringing: the big red suitcase with The Boy's stuff in it, a plastic container with the floor mat in it, the laptop & novels, The Boy (very important) and a change of clothes or two for the adults. All that stuff, while carrying a baby, is difficult to manage. It is also nice to have another adult present when assembling The Boy's floor mat, iPod setup (there's a great cord that plugs into the iPod, the television and the power outlet so he can watch "Goodnight Moon" five hundred times over the weekend - thanks, Uncle Apple!) and room setup.

They bring a bed in addition to the crib. The Boy is supposed to sleep in the crib, but he doesn't. He sleeps in the bed with whichever adult is present. It solves lots of problems, considering that he associates the crib with blinding, searing pain.

Sigh.

Part of me hoped that they'd skip this weekend. Call me selfish. I wanted a walk to the diner & breakfast with him on Saturday morning. I wanted a walk to the comic book store together tomorrow afternoon. I wanted dinner with Uncle B & Aunt L on Sunday at our house.

Waiting for Godot, part 38

The thing that I hate most about the cancer recovery is the waiting game. The Tumor Review Board met yesterday and discussed The Boy's case, but we have heard nothing. My wife called the doctor this morning, and the doctor has heard nothing at this point. Here's what this means: we don't know if we're going to chemo tomorrow morning or if he's going to radiation tomorrow morning or neither.

Just to review, here's what happens when he has chemo (all plans are on hold): Grandma flies / drives from Pittsburgh to Livingston, NJ; Grandpa spends the morning at the hospital; Chai Lifeline charity brings food & meals & a Shabbat dinner for us; Uncle B & Aunt L bring dinner on Sunday; Musical Daddy cancels his after-school stuff on Friday, Monday & Tuesday to help out.

The fact that all this stuff is on hold is really frustrating. It's hard to get plane reservations at the last minute for Grandma. It's hard to get a bunch of meals prepared at the kosher place for us on no notice. Plus, knowing that he's in the hospital changes my weekend plans. There's cleaning that gets done when The Boy isn't around (toys, floors & stuff). There's stuff that I need to pack and prepare for the hospital.

Frustrating. Why do I expect to receive a call at around 10PM tonight telling us that chemo is on for Friday?

Sunday, February 22, 2009

Wonderful evening...

Uncle B & Aunt L canceled out on us tonight, so we were left by our lonesome. We wound up having an (unscheduled) wonderful evening, regardless - we miss them, but we'll see them in a week, so no biggie.

We did get a little rest in the afternoon when I got home, then I did some writing for school. We went to Big Lots to spend a 20% off coupon. Big Lots, if you've never been, is a Crap Store - it's a glorified dollar store, that sells everything from cosmetics to soda to groceries to furniture. It's all cheap stuff. We like the dish soap and dishwasher soap in particular, although I bought some cheap batteries for school and some Little Debbie coffee cakes.

After that, we went to Arirang, the hibachi restaurant near us. It's fun - the chef cooks the meal right on the table in front of you. The Boy loved watching him juggle the spatulas and toss the food around, and the onion-flame thing was a big hit. So were the flashing birthday lights. The food was an immense hit - he ate his body weight in sticky rice. (Mental note: figure out how to make sticky rice for Littlest One.) He had steak, too. He loves steak. He was, I would like to note, a perfect gentleman all evening.

He's doing more walking, both on his own and holding our hands. He likes it, for the most part. It was easy getting him to sleep tonight because he was so exhausted from the shopping trip and the dinner out.

It has been really, really nice pretending to be a normal family for a little while. It has been really, really nice dealing with bedtime issues, and tantrums, and stuff that normal parents complain about. Next week, things get interesting, radiation or not.

Saturday, February 21, 2009

Pretty predictable.

The only thing that I've noticed about being a Dad is that, if you pay attention, most of what The Boy does is pretty predictable. Infants like routine, and they like things to be Just So. My wife continually cites an article she read stating the obsessive-compulsive nature of young children. I agree with that entirely. He wants things to be a certain way, and when they are, he is happiest.

Breakfast this morning is a perfect example. We normally go out to breakfast on Saturday mornings. It's tradition. He expects it and enjoys it. To make things work better, we gave him a snack immediately upon waking. This allowed us to focus on getting ourselves ready and getting him ready quickly and efficiently. We got to the restaurant and ordered quickly; we know the menu so well it only took a quick look to remind ourselves.

The biggest difference is that we used a booster seat instead of a high chair. He liked it much better. He sat in it willingly and played while we waited. When we got the check, he walked (holding my hand) all the way to the register before sitting and refusing to get up again.

It's actually pretty cute. When he's done walking, he just sits and looks up at me. He doesn't fuss - much. He just waits. He will not stand up again until he's rested. We walk him as much as possible, because he needs the strengthening.

Tomorrow, Uncle B & Aunt L are coming over. It should be fun

Friday, February 20, 2009

My weekend's clear... now what?

I was expecting to be in & out of the hospital from today through Tuesday. Not so much anymore. So, now what?

Here's the "fun" bit about having a kid in chemotherapy: the complete and utter lack of a consistent schedule. As soon as we got yesterday's news, we had to:
1) move a plane flight by my mother-in-law coming from Pittsburgh; 2) reschedule Aunt M's visit from Harrisburg to take over for mom-in-law on Monday morning; 3) reschedule Grandpa's Friday, Monday and Tuesday back a week; 4) figure out how I'm going to juggle musical rehearsals and helping get The Boy out of the hospital in another week; 5) reschedule a couple of visits from friends, or move them from the hospital to our house.

Keep in mind that next week's chemotherapy is entirely contingent upon the Tumor Review Board's decision. We're not sure when they are meeting, and we're not sure if such decisions take one meeting, two or more than two meetings.

(Tumor Review Board. What a name. Sign me up for that one... I can just see the meetings. Folders handed out with pictures of tumors, like "America's Next Top Model." Urgh.)

I am not complaining about having to do this rescheduling. It is a joyous event, to have good counts for one more week. No nupagen, no transfusions, keeping those beautiful, long eyelashes for a little while longer. No Diaper Hell, no making six trips to the hospital every day and no overdosing on caffeine to keep myself going. No cleaning the floor and the toys two or three times per day, no crappy (relatively speaking) television set with not enough sound playing 24 hours per day except for the random shut-offs that happen.

I think we're going to go out to dinner tonight, to celebrate having one more week of good counts and no nupagen shots. I have a doctor's appointment after school, then I'll rest with The Boy for an hour or so. After all, he gets very angry when he can't put me down for my nap. We'll go to the hibachi place on route 22, where my sister-in-law bought us a gift certificate for the holidays. The Boy will really like watching the chefs cook the food, I think! And, since his counts are good, we can relax a bit and enjoy the evening.

Then, episode 6 of the last season of Battlestar - 4 more after tonight, then the best show on television ends. Sigh.

Thursday, February 19, 2009

No chemo this weekend!

Change of plans... The Boy's case is going in front of the "Tumor Review Board" next week. They're going to decide if he gets radiation. Because he has so much of his kidney left - 80%!!! - radiation is now an option. Normally, radiation on a single-kidney person is NOT okay. In this case... it might be.

Urgh.

Chemo is pushed back a week. At least.

Radiation is a good thing, though. Just ask Bruce Banner... Peter Parker... Otto Octavius... Ronnie Raymond & Martin Stein...

Quick hits...

The scans came back "No Evidence of Disease," which is exactly what we were praying for. Only problem? The issue of radiation has been raised again. We're tentatively scheduled for a five-day chemo stay this weekend, but all could change with a telephone call today.

Ah... just what we love best: not knowing what the frak is going on.

The Boy has been running a borderline fever for the last day: right around 99.3, which is "Go Time" for a hospital stay. The only things that prevented us from taking him in last night were: he's already heading in today (Thursday) for a checkup and counts, and he was playing like a normal kid all day and all night.

Tuesday, February 17, 2009

Scans today

Today is the big CT scan, and we're concerned. I mean, nothing seems to be showing up right now, and we have no reason to suspect anything. But, whenever a scan like this happens at the end of a stage of chemo, one's mind always starts to wander down dark pathways. Are we going to find tumor regrowth? Are we going to find tumor moving to the lungs or anywhere? Are we going to find more of the tumor swallowing his remaining kidney?

I don't think so, The Wife doesn't think so, and the doctors don't think so. But, then again, nobody suspected that he'd relapse in October.

Monday, February 16, 2009

Hooters!

Went with Uncle P & Cousin J to Hooters for lunch today with The Boy. We had a very good time: he was charming and pleasant. He was fascinated with the balloon that they gave him, yanking the string to make it bounce up and down and using it to play "bop bop" with Musical Daddy. He also did a lot of coloring, thanks to the crayons and placemat that they gave him - who'da thunk that Hooters would have a children's side? Plus, he charmed the tops of the waitresses around us.

Not literally, although I wouldn't complain if he did.

Best experience? The lunch was a result of a friendly wager between Uncle P and myself. I took the Steelers for the Super Bowl, he took Arizona. No spread. I won, so I dressed The Boy in his Steelers diaper to rub it in at today's lunch. No sooner had Uncle P said, "I hope he poops [the diaper] up good," then I smelled something wafting through the air... and had to change him using the women's room at the restaurant, because changing facilities didn't exist in the men's room. Sigh. Strike one blow for women's lib. Anyway, juggling a baby, a poopy diaper that had to be rinsed before put away and a diaper bag, with a pulled muscle in my back, was not fun at all.

Then, when we got home, I got a full fifteen minute nap while The Wife was introducing The Boy to sidewalk chalk. Hooray! I'm waiting on a clarinet lesson student to show up. Should be fun.

Sunday, February 15, 2009

Lazy Day, part 16

We went to IHOP for breakfast this morning. I didn't head in to church, because I woke up and couldn't talk, or move. After a quick snack for The Boy, we went to IHOP and enjoyed a fast food breakfast. He ate half of my eggs, half of my wife's eggs and half of her pancakes. He didn't like my pancakes - the healthy nut & grain pancakes. Got home from IHOP in time for a big poo (one of four poopy diapers on the day, although to be fair two of them were just little poo residues) and lots of playing. At around ten, we retired to the bedroom to rest for a while, because The Boy wanted to go there.

The two of us napped while The Wife went food shopping. We woke up in time for lunch, then returned to bed pretty quickly afterward. The Boy and The Wife napped for a solid couple of hours while I finished filing papers downstairs and started our taxes. When they finally rolled out of bed, we realized that he had spent most of six hours in bed this morning and afternoon. Whatever.

The next two hours were spent with the normal sort of playing he's done. Every once in a while, he'll push himself to standing without grabbing onto anything. He'll look around proudly for a moment, then take a couple of steps forward to grab a toy, or a bench, or the couch, or a parent. There was even a neat moment when he picked up his drum by the mallets (which were attached to the drum by a string) and carried it six or seven steps across the room! It's pretty darn cool to see, because he is really buying into the whole "walking" thing. The amazing thing is that his walking is 100% at his own pace and his own style.

After dinner, we drove up to Grandpa's house. Uncle T had brought us a cooler full of food, and I didn't get to pick it up after church. The Boy played with some cool wooden toys at showed Grandpa some of his new tricks. Then, we stopped at Uncle P's house and played for a while. The Boy ate a couple of animal crackers, then he puked it out all over my pants. But, he showed off his walking and his horsey-riding skills.

Now, it's midnight and he's still awake. We kept him up too long. Sigh. One more insomniac night. You'd think we'd have learned on Friday.

Saturday, February 14, 2009

Life updates, and New Baby Spoilers

If you don't want to know the sex of the new baby, here's the summary update, after which you should stop reading: 1) I'm sick, have been sick all week; 2) The Boy's been a little jerk for the last couple of days, including stopping sleeping; 3) the new baby is healthy and fine.

I spent Thursday at the high school, and the high school director spent the day at my school. Suffice it to say that he had a better time than I did. I'm not used to being mocked by students in a malicious fashion, and I'm really kind of upset about it. While I understand that being the fourth guy in four days to work with a group of high school students has its own problems, I know for a fact that I bring a new and different perspective to teaching than my colleagues. I was not prepared to have an orchestra class being actively mean to me! Worse, the wind ensemble - the top performing group in the high school - was just as mean. Kind of shocking, really. One expects that students with that much talent would have rehearsal etiquette to match. I was pretty darn excited to have the day end, because it was one of the first times in my teaching career that I just wanted to go home at lunchtime instead of finish my day.

I spent the rest of the afternoon wrestling with my computer at school, because I fried the file system on the hard drive. Whatever. I went home, tried to sleep and failed because The Boy was not having a sleeping daddy. The Wife tried to take him out of the room and let me sleep, but he crawled back on the door, beat on it and cried until I came out and picked him up. I stayed home from choir, because my throat was killing me. I actually fell asleep at a decent hour.

Friday was a relatively normal school day. It was REALLY nice to be back "home", as it were, in MY school and MY band room and MY kids. I went home after work, and The Boy had just fallen asleep for his nap. I dropped my computer off at the repair shop (the computer guys at school are way too busy and underfunded to be able to save the documents on the machine. It is really worth $150 or so of my own money to save the hundreds of man-hours of documents on that hard drive). When I get the machine back, I'm also going to soup it up with some more memory. It's a nice machine - 2.6 GHz pentium 4 with a decent hard drive (when I don't screw it up) and no memory. Whatever.

I got back home just in time to help The Boy wake up from his nap. I asked The Wife to take him outside again, with a repeat of Thursday. Okay, that's fine. We ate dinner, played for a while, and he started to fade around 8 or 8:30. We took him inside to go to bed.

The bed-preparation time is beginning to illustrate that he's entering his "Terrible Twos" phase. He does NOT want to take his medicine. He will not eat apple sauce, like he is used to getting his morning and evening blood pressure medication. To make matters worse, he will NOT take the bactrum, the prophylactic antibiotic he has because of the port in his chest. Last night, he spit the medicine out. We're going to try some different ways to give it to him, but it's been a real struggle.

He's also screaming and flailing every time we lay him down to change his diaper. It makes it that much more difficult to avoid poop getting flung everywhere. Considering that he's pooping a LOT - like, four to six times per day, he has poop in his diaper - that makes it difficult to manage him.

But, I digress.

We brought him into his bedroom, and The Wife read him his stories. He was calm and still, yawning and rubbing his eyes. I took over for her while I did some of my schoolwork. Making a long story short, after I was in there for 45 minutes or so, he was AWAKE. He did sleep for a few minutes, but it didn't take. He got out of bed and started to play with everything in his room. We closed the door and I sat in the room with him and tried (unsuccessfully) to prevent him from destroying toys. Eventually, I got frustrated and brought him outside.

I should tell the truth. I didn't get frustrated. It was 10:00 and Battlestar Galactica was starting. He had another poopy diaper and a half, and finally fell asleep in the last ten minutes of the show.

He slept until nearly 8:00 this morning and woke up cranky and grumpy. He cried incessantly until most of the way through breakfast at the dinner, refusing to be comforted by either one of us, some trucks, some stickers and a coloring book with crayons.

We got home from the diner and tried to give him his medicine - no good, except for his blood pressure medication served in ice cream. Maybe we can get a pill-form antibiotic and serve that with ice cream, until he figures that out and won't eat it. (I can't imagine him not eating ice cream, but that's beside the point.) I tried to nap with him in the late morning, but it again didn't take. I think we'll go out to CostCo and walk around for a while in the hope that that calms him down.

The new baby seems healthy - the correct number of fingers, toes and bodily organs with no tumors that we could find. (Hooray!) The Wife had them look carefully at the kidneys just to see if anything weird was visible. They then went hunting for the sex of the baby. The fetus was shy at first before flipping over and exposing himself to the ultrasound machine:

It's a BOY! A baby brother for The Boy! I guess I'll have to come up with a name for the new little one when he is born. Maybe it'll be The Boy and The Baby, or The Boy and The Other Boy or something.

We're thinking about names. We have three lists: NO, Short List, and Shorter List.

Wednesday, February 11, 2009

Therapy

(No, not for me, although G-d knows it wouldn't be a bad thing.)

The social worker came by today to let us know the general plan. They want once per week therapy for each of physical therapy and occupational / play therapy. This will be accomodated as best as possible, considering The Boy's chemo, checkup and sick schedules. With luck, they will have enough flexibility to be able to adjust as needed.

The physical therapy is for the nerve damage caused by the vincristine, among other things. There's nerve damage in his feet and hands which should not be permanent. It's not significant, but it's significant enough to have caused strength and motor control issues. This is why he's not walking and why it has taken him so long to figure out how to climb onto the couch and bed and chairs.

The occupational therapy will help with his fine motor control and with his attention to task. They will also help us with his response to our spoken words. Hopefully, they will also show us how to encourage his vocabulary and sentence forming to develop.

I am happy that we starting this! This takes quite a load off of my mind. He does respond to some things - for instance, when we ask him if he's hungry, he will crawl over to his high chair. When we offer him (verbally) a rice cake and some honey, he gets really excited and flaps his arms around in an adorable fashion! When we offer him something he does not want, he says, "Noooooooo...." in a growl and pushes it away. He does understand, and he gets around fairly well. We would be more comfortable if he was developing in a more timely fashion.

On the cuteness scale: he climbs into his little toddler-sized chair and sits down, the King upon his Throne. He loves drinking his juice and having a snack from His Chair.

Blech.

(Is "blech" pronounced "blech" with a ch as in chips, or "bleck" with a hard K sound? The debate continues.)

Last night, I didn't get to sleep until around 3:30AM. I hate when that happens, mostly because I spend lots of time tossing and turning in bed until I get frustrated enough to head into the living room. This, I'm sure, causes extreme irritation in the rest of the family, as evidenced by The Boy waking up enough to yell at me on a half-dozen occasions. Richly deserved, but I shouldn't have to be scolded by a 17-month old punk kid because I have a touch of insomnia. Now, I'm at another school for the day, my team teacher took the day off (I did the same thing to him, so I shouldn't be surprised), and I'm pouring hot coffee down into a demolished stomach so that I have the patience not to strangle a kid.

They're not my students. I'm just borrowing them for the day. I have no right to return them to Band Guy with a few less dummers. (Whoops - did I leave out the "r" again?)

On the other hand, The Boy woke at 6:30AM, bright and smiling. The Wife didn't. What a morning! I think he's more of a morning person, like I am. Time will tell.

Updates to follow. My teaching schedule today is more spread out than my usual. Normally, I have four classes in a row, right in the middle of the day. Today - prep period, class, prep period, class, lunch duty, class, lunch, class, class, go home. Well, go to my school and get some stuff done.

The Boy's IEP meeting (it's not a special education plan, but as a teacher, that's what I respond to) is today at 1 o'clock. We'll find out his therapy schedule at that point. Updates will follow.

Tuesday, February 10, 2009

I hate being sick.

I'm not very good at sitting still. Yesterday, I didn't feel like moving at all - more to the point, I was unconscious for most of the day. When I was awake, yesterday, it was perfectly okay to spend the time staring up at the ceiling or marshaling my energy for a deathmarch into the kitchen to get another Vitamin Water. Today? I'm at a solid 35% of normal, which means I feel JUST good enough to move around the house and watch TV and do some light computer work. The only thing I got done was clearing out some shows on TiVo and some updated scales sheets for my students. Exciting, no? No.

The Boy was very, very cute today, and he was exceptionally snuggly for most of the day. It makes sense - his blood counts are at the low point of the cycle from Monday through Wednesday, so he probably has no red blood cells in his body. That would certainly explain his general energy level... he doesn't seem to have what we had, considering that he's still eating like a little piggy-piggy. Thankfully.

This morning, I was trying to nap. This effort was not aided by a bouncy 17-month old. I asked The Wife to take him outside, and this was the wrong move. She was more than willing, but he was NOT. He crawled down the hall, tried to push the door open, and sat and cried piteously outside the door. I mean, this was the saddest crying that I have ever heard in my life! When I opened the door, he was so happy and excited to see me! We both did nap, a short time later.

But, really - have you ever really thought about the responsibility of being a parent? I mean, besides the whole "raising a child to be a socially productive person" thing, which is scary enough. This little person loves his Mommy and Daddy with his entire heart, body and soul. We, right now, are his entire world and universe. As a matter of fact, The Boy, in particular, cannot imagine anything outside of us. We are his blankie and favorite teddy bear. Man, that's heavy stuff.

I hope that I'm never put in a position where I'm going to breach that faith and that love. I know that I will be, and I know that I will. I just want to be aware of that incredible trust, so that I will only breach it at my, and our, choice. (That refers back to a series of science fiction novels, starring a character that was famous for his honor - except the rare times that he breaks it, which is always at his choice, instead of being forced upon him.)

This afternoon was spent alternating between napping and playing, and we finally emerged from the bedroom at around 3:30-ish. A lady at from the temple came by for an hour this afternoon, to play with The Boy while The Wife did some cleaning. The toys got cleaned and the floors got vaccuumed. Now, I'm sitting with The Boy as he eats his dinner; The Wife is cleaning in the kitchen. (Barefoot, pregnant and in the kitchen... heh. Heh.) I'm not going to chorus tonight, because I'd actually like to go to work tomorrow - the next two days are "switch days," where I am another teacher. Should be fun and interesting, and I want to get through it as much as possible.

My diet yesterday: 2 bottles of Vitamin Water, two servings of chicken broth. My diet today: 2 more bottles of Vitamin Water, two plain bagels (one for lunch, one for dinner) and a serving of Cream of Rice. Oh, and the green tea that I'm drinking right now. Ugh.

Still meh, but headed in the right direction!

Still crappy today - temperature's still up, not moving very quickly at all and not feeling like eating at all! Fortunately, my wife feels much better than I do and is able to resume normal playing with The Boy. That makes me happy, as I hate feeling absolutely useless. I'm still not up to heading to school, and I'm not sure about Dapper Dans tonight. We'll see. I still don't feel like moving or eating. Yuck.

The Boy is very, very cute, though. Over the last couple of days, we've lowered his high chair so he can use the kitchen table as a "tray" instead of the high chair tray. He seems excited about that, as he's now able to eat like a Big Man instead of a little baby. We'll see how long it lasts - it might last forever, it might just go until he decides to start throwing food around again.

The Wife is hoping that this awful stomach thing is something that we picked up from The Boy and not the other way around. I second that. This affected me terribly, and I'd hate to see him knocked on his keester like I've been.

Monday, February 9, 2009

Meh. Just, meh.

At about 12:30 last night, I suddenly woke up sick. Stomach cramps, nausea, fever... Yuck. I'm home from school today and tomorrow, at least, on the doctor's orders. I'm kind of upset about it, because I'm missing running a sectional for a buddy of mine, and I hate missing more time from school. I missed so many days earlier this year that every day that I miss is a little terrifying! I don't want to miss anything else because I'm starting to get a little afraid for my job!

On the more positive note, tomorrow will only be the third day that I miss for my own illness. That's WAY less than usual. Just can't get any energy or enthusiasm; spent more of the day asleep. Now I'm going back to bed.

Sunday, February 8, 2009

What a Great Day!

No sarcasm there, folks. Sunday was just a wonderful day, from start to finish. It was even moderately productive, as you'll see...

We woke up at 7:30AM, about fifteen minutes after the television set went on. It's set to go on at 7:15 to wake me; it didn't. Sigh. The Boy woke up, gave some hugs, crawled over to the edge of the bed and started pointing in the general direction of the kitchen. The Wife took him and fed him while I got ready for church.

Church & lesson went well - I think I taught well today, which has been a nice change over the past couple of weeks, where I was just establishing a baseline for actual teaching. My student hadn't taken private lessons since the summer, so it took a couple of weeks for her to remember how to play to my standards again. Got home around 2:00, as per usual.

The Boy, who hadn't napped, was adamant about laying me down for my nap. We went into the bedroom to rest, and my father came in the house on his expected visit. I showed off the new stuff in the house - it's amazing how much the garage doors and new windows and new furnace have done for the living quality in the house! We need it more than ever, considering how much time we're going to be spending in the house during the duration of The Boy's treatments. Grandpa & The Boy & I went for a walk around the neighborhood, stopping to grab some coffee and at the comic book store before heading home. It was a little over 50 degrees today, which means that we HAD to get out of the house!!

Grandpa's visit was a short one, and The Boy and I hit the mattress at around 3. I slept until 4, he slept until 5. We both woke up famished - I had a large breakfast and didn't eat lunch, and he hadn't had a snack since a 1 o'clock lunch. He ate an entire rice cake with honey - no mean feat, considering the rice cake was as large as his head. He loves honey so much! His entire body starts vibrating when I show him the honey jar. I might start calling him Pooh Bear because of that!

Mommy came home a little while later. She was at a Mommy's Group hangout; this gathering was without children, which was why she allowed herself to go. (It's a bad idea to expose a baby with a depressed immune system to other small children, you know?) She played with The Boy during the time she prepared dinner while I paid some bills and organized some household papers. Dinner went well until he started hacking and coughing. At that point, the meal abruptly stopped lest he throw up. He didn't.

After dinner, we had so much fun! We played "flying baby," which consists of him grabbing onto my calves and getting lifted into the air, like I'm doing a stomach crunch. It's a great exercise for me, and he really enjoys "flying." We also did some horsey rides, which he loves. He and I colored for a little while, which mostly consisted of him scribbling a few lines then spending fifteen minutes putting the crayons in the plastic bag and shaking them out again, repeat as needed. Grandma called on Skype, and The Boy showed off his new tricks: climbing into his little baby-sized chair and climbing onto the couch!

At that point, The Wife started bedtime procedures, and I did some more schoolwork - teaching work this time, not studying work. He woke up around ten, and I sat with him for a little while until he fell back asleep. He crawled in to join us in the bedroom a little while later, when we were talking too loudly.

He's sleeping now. So's my wife. They are cute.

Saturday, February 7, 2009

Perspective Shift

So, let's sum up my afternoon and evening with The Boy yesterday: get home, lie down for a nap, get a LOT of food vomited on me. Nap for two hours post-cleanup. Dinner is yummy, although he wound up with a mostly-separate meal (hooray, toddler eating habits!). Fun playing afterwards, followed by having his entire dinner vomited on me (yet again). The next hour was spent with him crying and upset, spitting his medicines down his chin (including Zofran, the wonder anti-nausea drug) and snuggling more than moving around - but in his specific ways, which aren't necessarily comfortable. He finally went down for sleep at about 9:30 and woke up for the last few minutes of Battlestar Galactica. He woke up three times for brief moments before finally joining us to sleep at 2AM or so.

Interesting shift of perspective. Pre-cancer, I would think that that was a miserable night. I would harp on the losing of two meals, the fighting at medicine time and his clinginess.

Post-cancer? Not a bad night. He wasn't in pain, as far as we can tell. He was unhappy, but that was mostly fixed with snuggles and hugs.

Just wanted to let y'all know about how one's priorities and viewpoints shift.

Friday, February 6, 2009

Fool me twice...

I got home from school today around 4 o'clock, like I usually do. It's amazing that, at a time when I've actually almost caught up with the work at work, I can still find an hour's worth of stuff at school. Anyway.

All week, I've changed downstairs when I've come home. At school, the students have been passing around a nasty, nasty THING that has had over 100 students (out of 750) absent every day this week. It's not a "my tummy hurts because I have a test" thing - it's something that has them drag-assy for a couple of days before and after, with big black bags under their eyes. My 6th period class - which is the 7th graders right before lunch - has been devastated by this illness, with around half of the class missing at least one day this week. I've dropped trou when I've come in the house, because I'm afraid that the kids' germs will stick to my clothes and spread to The Boy.

Not to give you images of me going up the stairs in my unmentionables. That's just scary.

So, I get my wife to bring us a cereal bar. I give The Boy a little piece, and he takes one bite and pukes his lunch, snack and one bite of cereal bar on me and the bed. After getting cleaned up and changed, we both nap HARD for a couple of hours. We had salmon and pierogies for dinner; he wasn't into either, so The Boy ate some grapes, an egg with ketchup and a big of other stuff.

Long story short, about an hour after dinner (even after getting Zofran, the great anti-nausea medicine), he released his entire dinner on me. That makes twice he puked on me today. Sigh.

We're pretty sure that (despite good blood counts at the Valerie Fund Center today) this is chemo-related. He'll be on a bland diet for the next couple of days, at least until he goes to the center on Monday. We were a little under the gun tonight, because we used the last dose of Zofran after the second puke, and the doctor had to call in the refills. The Valerie Fund Center's answering service doesn't take messages or page doctors, so I used our pediatrician's personal cel phone (which he gave to me / us about five months ago in case of situations like this) to get him to call in the prescription.

He won't go to bed on time. With luck, he'll be asleep by the start of Battlestar (10PM) tonight.

Hey - anyone on Twitter? If so, let me know - my username is "chucksax".

Wednesday, February 4, 2009

Never Enough Time To Do What We Need...

Last night was an interesting night. I got home from barbershop at 11 o'clock, like usual. The Boy woke up when I entered the house and declined to go back to sleep. More to the point, he was Awake and Ready To Play. Long story short, we were up until 12:45AM, although we did finally stop trying to put him back to sleep by 11:45PM and gave the poor kid some freedom from bed.

It was really, really nice to deal with - here we go again - Normal Parent Problems. Normal Parents complain about their kid not going back to sleep at night. Normal Parents come to work glassy-eyed because they were up with their toddler at all hours of the night playing peekaboo. Normal Parents backtrack on their sleep training to get a few good hours of sleep.

It did suck to get four hours' of sleep before work. I'm not young enough to comfortably get by on four hours' sleep anymore. Thank G-d for coffee.

After work, the three of us watched the new episodes of Scrubs before he and I settled down for our nap. My telephone woke me up at 5:30, and I spent 40 minutes chatting with Band Guy about marching band for next year.

The social worker arrived at around six for our conference. Again, long story short, the county is covering most of the cost for his therapy. It'll cost us around $14 per visit, pending me digging my 2008 W2. It's looking better and better that I didn't work for most of 2008 and that The Wife isn't working now, because it is driving the cost down for us significantly. They are having a team meeting next week, while I'm at school, to discuss this. Okay, fine. The Boy had dinner while we spoke, consuming roughly his body weight in chicken and half of my dinner to boot.

...all of which he puked up about an hour or so later when he got his Pepcid. Hopefully they can mix it better, because this keeps happening. It doesn't do him any good to get stomach acid medicine when he vomits every time he gets it. It would seem to me that that stuff would be doing more harm than good in that situation. It also seems that The Boy has now not had food since his late lunch. Sigh.

He was playful before he puked, snuggly and clingy afterwards. Not unexpected. He got to sleep around 9:30, and I spent the next two hours doing schoolwork. This research stuff is pretty detailed, you know? Now, The Wife is sitting in with him.

My prediction? The toddler bed experiment won't last until the end of this week. If we can't leave him alone when he's in his bed without him pitching a fit, then we need to do one of two things: let him cry it out, or stop leaving him alone in his bed. The problem with letting him cry it out now is that we feel uncomfortable letting the baby with hypertension cry himself into a frenzy. Also, the normal snot that heavy criers would bring into their stomachs (runny nose, snot goes somewhere) gets puked up by The Boy. So, letting him cry it out bring significant problems. Stopping the toddler bed thing brings the problem of - for all intents and purposes - chaining one of us to the bed while he's in there and effectively ending or curtailing our sex life until he's old enough to understand reasons to use his own bed.

Even though we haven't exactly felt as romantic as we could be, I'm not too fond of the second option. It might be time (with doctor clearance that we're not going to give him a heart attack) to teach The Boy sleeping through the night the way I was taught - close his door, close our door and wear earplugs.

All things considered, I think he'll be out of his toddler bed by the weekend. I don't think the situation - with one of us sitting in there with him until he falls asleep and then sneaking away on a squeaky floor and praying not to wake him up - is tenable. I REALLY don't want to lose another hour's worth of sleep at 3AM to try to put him back to sleep only to have him follow me into our bedroom twenty minutes later.

Monday, February 2, 2009

Early Intervention

As I sit next to a sort-of-sleeping baby, I type this. The Wife spent an hour or so this evening practicing while I did schoolwork. My schoolwork tonight was monkey-work on the computer, so I can respond to a crying baby. Whatever. He sits up every fifteen minutes and wants hugs. I'm okay with that for now.

The early intervention testers came today. Making a long story short, they played with him with different toys and watched him walk, stand, cruise, crawl and eat. They agreed that he was a charming and beautiful baby.

First, the good stuff: his social skills are absolutely appropriate for his age, and he has some wonderful fine motor control. His eating in particular was good, but you all knew that. He is engaging and engaged in his surroundings. His expressive language is appropriate for his age, and his play skills are good. His self care skills - brushing his teeth, combing his hair (well, knowing what a comb is for) and basic abilities to know where his clothes go and assisting putting them on - are good. And, considering all of the s&&t he's gone through, he's not THAT far behind the curve.

But, he is behind. His attention to task is fleeting, in a relative sort of way. (Hm. I don't know if that's chemo-related. I'm positive that I'd be diagnosed ADHD today, and I'm more focused and on-task than most people I know - I just carefully choose the tasks.) His gross motor skills - walking, climbing - are low for his age, and his physical strength is also low. Those are both side effects to the chemo - the physical therapist noted the nerve damage in his feet (which we noticed) and hands (which we didn't notice). He is, however, making good accomodations to accomplishing tasks - things like using his shoulder muscles and body weight when his arms aren't strong enough.

One task that she noted a problem with was stacking blocks. He'd put the second block on top of the first and lean on it from his shoulder to try to make it stick - when no pressure was actually required. That sort of thing.

We have to wait for reports for them. But, considering that I've been in the public schools for nine years, I understand how to read between the lines. We're going to get some occupational and physical therapy. That's kind of a no-brainer: if he's like this during a good time (like January really, really was - as was December), than what's he going to be like in a BAD time? Better to be on top of things now rather than wait for stuff to go more wrong.

How do I feel about this? I don't know yet. Scared. Concerned. Hopeful. Scared. Angry. Resigned. Scared. Intent. Focused. Scared. I'll deal with this the way I deal with everything else: do what I need to do and worry about the fallout later.

In a weird way, I'm relieved. This cancer is so under-the-skin, and this chemo is so... I don't know, incomprehensible is the closest adjective I can come up with. It's nice to have something that I can finally help with. I can do exercises and games and tasks and things like that. That's relatively easy. I can sink my teeth into things like that. When he gets old enough, I can work with him and a trainer to increase any bodily strength necessary - G-d knows that I've studied weight lifting enough that I can safely train him, once his focus is developed enough to go through with it.

We'll see.

Sunday, February 1, 2009

We're home!

So, this seemed to be a relatively smooth hospital stay. In on Friday morning, home at 5 o'clock on Sunday afternoon. I'm glad about that. The etoposide was given this morning, and he got a pint of red blood cells this afternoon. I arrived at the hospital a little before two, as predicted. The Boy was just settling down for a nap, and I kicked my wife out of bed and joined him. My wife and Aunt M packed up The Boy's stuff while I helped him rest. He napped until about 4, then we loaded up the car and came home.

When we got home, he had a snack of half of a rice cake and some honey. It was quite cute: he climbed the steps on the way inside the house, then he crawled over to his high chair and yanked his straps until I came over and sat him in the chair. When I showed him the rice cake and honey, he bounced up and down excitedly and ate the whole thing in about a minute and a half - lightspeed for him.

So, after a diaper change, he and I rested in my room until Mommy and Aunt M got home. Now, we're gathered around the television for the modern religious holiday of The Superbowl. We do have chips and dip, but I'm already at 1700 calories for the day and don't want to HAVE to exercise to get close to my 2200 calorie goal.