Monday, August 31, 2009

Younger Bro update

So, things kind of reached a head this weekend when it came to dealing with Younger Bro. He's been a fairly miserable baby: he hasn't fed comfortably, he's been very, very gassy, he hasn't liked being held by most people, nothing soothed, him, and he's absolutely hated me since he was born. Very, very unhappy little man, that's for sure. He's just not been able to settled down and to get comfortable.

From The Wife's standpoint, it's been absolute torture. He's been chewing his way through her breasts, having opened wounds 7 weeks ago that have yet to heal or to improve. We thought the thrush thing was a good diagnosis, but the help that it provided was small and short-lived. Every time he fed, he was reopening the wounds, making it immensely painful for her. Huge credit for her persistence, when 99% of mothers would have given up. Not The Wife - not only is she a tough, stubborn broad, but she's bound and determined to feed her children ONLY the right stuff.

This weekend, we all had a minor meltdown on Sunday because of the incessant screaming and carrying on by the baby. Even The Boy was having issues with it, which is completely unlike him.

Long story short, The Wife called a lactation consultant this morning and went in for an appointment this afternoon. Turns out that he has "Tongue Tie"! For those too lazy to click the link, it's a not-uncommon condition that has the tongue anchored to the floor of the mouth by extra skin and muscle. The most common treatment is a minor outpatient surgery, wherein they snip the extra stuff. It shows generally good results, although it is possible (and somewhat likely) that Younger Bro might need further surgery and other corrective therapies when he is older and dealing with complex language issues.

This is, on one hand, a huge relief. Friday is the day for the snipping, and things should improve immediately. It's challenging, because Friday is the day that Grandma and J head back to Pittsburgh, but we'll muddle through somehow.

On the other hand, WHAT THE AITCH-EEE-DOUBLE-HOCKEY-STICKS DO WE HAVE TO DO TO HAVE ONE GOSH-DARNED NORMAL FAMILY EVENT HAPPEN? We can't have a one-year-old party without a cancer diagnosis, Thanksgiving and Christmas without hospitalizations, a bris without a holy war erupting, and a 2-year-old party without infant meltdown.

Sigh. "Today, I checked my 2-year-old into the hospital for chemo and found out that my 8-week old needs oral surgery to eat and to speak normally. FML."

Seriously. My life sucks. What's next?

Chemo, Morning 1

The night was not so hot for any of us. The Boy got some Grandma for most of the night, starting at 1AM. That's a couple / few hours earlier than he usually does. I'm still convinced that he's having nightmares or flashbacks that scare the crap out of him. The Wife & I didn't get to sleep until well after 1AM: it was the first opportunity we've had in a couple of months to just sit and TALK, and we had a very emotional discussion about... well, everything.

The morning went surprisingly smoothly. Up at 6:30, packed and showered and medicined and all that, and in the car at 7:30. There was a brief delay at the bagel store, but we were at the hospital by 8:20. In admitting, we went right to a window, then right upstairs. We missed the elevator by 10 seconds, only to run into our pediatrician coming out of the next elevator. Fortuitous timing! We asked a few questions, then upstairs.

We're in 4206, which is a room we like because our AT&T phones actually get reception. We got The Boy settled, weighed, EMLA creamed, and happy with apple juice. I got the rest of the stuff from the car, and then I set the room up the way we like it. At that point, I went home and passed out for an hour and a half.

Woke up, put 20% of my dissertation into the formal outline required, and am now procrastinating making telephone calls. I have to find the title of my car, or discover how to replace it. I had to arrange for extra trash pickup because of party garbage. I have to call for an asthma doctor appointment then discover how my new PCP does referrals. Then, another quick rest, and back to work on my dissertation. I think I can knock off at least one more part of it today and the rest tomorrow and Wednesday. It's written, I just need to format it correctly and flesh out some answers and cut out some unneeded analysis. No worries - five more hours' work.

Day at the Park


Today was a nice, slow, boring day. Cleaned up the house. Napped a lot. Went to the park.

That was cool. The Boy had a nice two hours running around at the park, with some kids a little younger (16 months old) and a little older (his big sister, who was "5 and three quarters"). He had a really good time, even if it was a little depressing for us as parents.

Highlights: he finally crossed the "bridge" on the playset! He crawled across, because he didn't trust his feet to work, but brave little man made it all the way across and back, twice! He climbed the steep steps to get to the little curvy slide, but he chickened out when it came to the big curvy slide. That's okay.

The big accomplishment of the day was crawling through the tube-thing. That took him, like, fifteen minutes to work his courage up, and it took a few kids almost knocking him over to crawl through. But, he crawled all the way through. He needed some help getting out, but that's okay. The important thing was that he did it. I'm so proud of him!

He also pushed me on the merry-go-round, which was neat for him. He didn't go on the swings, though.

The depressing thing was how far behind the other kids he was! He looks so little, with no hair. His height is average or below for a 2 year old, which is a big change from HIM before treatment and from his younger brother. But, he's SO skinny and bald that he looks so young! Plus, his motor skills are just... behind. There were a couple of other 2 year olds that were (literally) running rings around him, climbing on stuff, and just better at that sort of thing. Frankly, he showed the same physical levels as the 16-month old that he palled around with for a little while.

Actually, that's fairly heartening. If he's "only" that far behind, then it shouldn't take too long to get him back up to speed... as long as we can stay OUT of the hospital! Name of the game, though, isn't it?

We're in for chemo tomorrow morning. Say a few prayers for us. This shouldn't be a big deal, but one never knows.

Saturday, August 29, 2009

Happiest Day in a Long Time!!!


GeoTagged, [N40.65957, E74.39115]

The party, in every way, shape, and form, was a true success! As my mother-in-law said, it was the happiest day in a long time.

There were four families at the party besides for us, from Younger Bro's age to around 6 or 7. All of the kids were on their best behavior all day! It was SO cute, with lots of little ones spread out over the floor.

We had to have the party inside because of the weather, and all of The Boy's toys were played with thoroughly and completely. The Elmo balloon that I bought on a whim was a huge hit, as were the drums. No one whined, everybody shared with the younger babies, and everyone left having eaten their fill.

The Wife's old neighbor in Jersey also came, and they stayed late and helped us clean the toys and put the extra food away. So, while the kitchen still needs a thorough cleaning, the house is mostly clean and straight.

What a wonderful day and celebration of The Boy's birthday. When you've had a young life with as many issues as he has had, any celebration becomes huge. It doesn't have to r fancy and elaborate - a BBQ with toys and a swingset is sufficient but necessary.

We needed this, and we got what we needed. Spirits rejuvinated, we are now ready for the next challenge.

Friday, August 28, 2009

Chemo Monday, Birthday Party Tomorrow!

This has been an interesting week, as per usual. On Monday, we were all set to do chemotherapy - Grandma took The Boy in to the Valerie Center for counts, I was at band camp with my friends in north Jersey, and we were all set with helpers ready to go all week long. Then, the telephone call: no chemo, counts too low, chemo next week.

We were glad about that, honestly, because we did NOT want him going in on Thursday or Friday and missing his party. Considering that we're losing ANOTHER week (more on that later), waiting an extra five days is not that big of a deal. The important thing is waiting until he's actually healthy enough to be poisoned, and that he's healthy enough to have his party.

We need this party. Not so much just The Boy - frankly, he's too young to really understand his birthday, and he's definitely too young to anticipate a party as something fun. We, as the parents, need it. We need to feel NORMAL for a little while - have a few family members, some friends with small children, and throw everyone together with a grill and some cake. We need to have a celebration of The Boy's life.

My mother-in-law has made an excellent point, one that we've been kind of clinging to for the past week: every birthday he has is a double cause for celebration. There are so many places over the past year and two months where we could have lost this wonderful, sweer, intelligent boy. There are so many infections that could have turned, so many opportunities to pick up a deadly flu (any flu, with no immune system, is a bad thing) or something unforeseen... so many opportunities for a bad reaction to sedation or anaesthetic, so many opportunities for Bad Things to happen. This birthday is a victory, a pause to relax, reflect, and collect ourselves, and a festival of LIFE.

My schedule for the next couple of weeks has definitely changed. My commitments to my after-school activities is substantially decreasing, and I'm not headed to PA for band camp this week. This is a wonderful opportunity for me: I'm away from home less, and at home with The Boy and Younger Bro more often. I regret not having a role to play with the band, but there comes a time to step aside and let others bear the banner.

Cuteness: when you ask, "How old is The Boy?", he says, "Two!" It's neat.

For your entertainment:

Monday, August 24, 2009

No chemo this week

Platelets are still too low. We're a go for next Monday, I think, so at least The Boy's party is still a go for Saturday.

Sunday, August 23, 2009

Chemo tomorrow, we hope

We're planning The Boy's week out tonight... we're actually taking Dr. Rifkin's advice and drawing up a spreadsheet for who is supposed to be where for this week. I've got half-days of band camp (Tuesday through Thursday is 10-2, which is an inconvenient half-day time, but life's frequently difficult), so I'm not going to be around much for this round of chemo. Grandma will be here tomorrow, then she's going home and returning Thursday morning. So, it's up to us to figure out what they high holy heck is going on!

Basically, we want to make darn sure that The Wife is never left alone at the hospital with both babies for longer than an hour. That just kind of makes sense, you know? Two small children, a 10x14 room... the mind boggles. Once that's covered as much as we can cover it, the next step is to try to make sure that nobody is left alone with The Boy for longer than three or four hours without some help, overnight notwithstanding. That seems to have been done.

A hearty shout-out goes to St. Peter's... we're calling in another group of people to join Team David for the stretch run. 20 more chemos to go, you know, and things just got made harder because of the second baby. So, in addition to my family, The Wife's family, Chai Lifeline, Alan G-d-bless-him Rubin & his people, and Aunt W's friend Justin, we're bring the Episcopalians into the fight. And, after all, when you need someone knocked firmly on their rear ends, you call in the British. We've got two folks from St. P's coming this week, and we'll hopefully be able to get a few bodies each chemo time from here on out.

So, tomorrow, I'll be leaving for northern Jersey band camp, and they'll be headed to the Valerie Center. If his counts are good enough, we're in... don't know if they are or not. We'll see.

Saturday, August 22, 2009

Nothing much new to report.

The Boy had a "meh" kind of day today. He was acting like a real toddler today - had a couple of major meltdowns, had a couple of majorly cute moments. You know the drill.

He was up early today, and The Wife and Grandma took him to Trader Joe, CostCo, and the Farmer's Market. I wanted to take him to Toys R Us, but he freaked out. He was long overdue for a nap. Getting him to go to sleep was a production and a half, involving much screaming and carrying on.

When he woke, we went to Toys R Us, and he was enchanted. So much stuff! I bought him a little tricycle - he really liked the pink and lavender one, but I just couldn't. It's a little red Radio Flyer whose pedals he can actually reach! He seems happy with it.

Tonight, we watched half of Coraline, the movie made from Neil Gaiman's book. I bought the bluray, so we watched it in 3d, which was kind of cool.

All in all, a boring summer day. Good for us.

Friday, August 21, 2009

Bloody lip + Low platelets = ???

Well, his platelets aren't THAT low, just on the low side.

The Boy was playing downstairs with me when I got a phone call from a buddy with whom I haven't spoken in a long time. He left to go back upstairs, tripped, and two teeth cut his lip.

It's not a big deal. It's something toddlers and young children do all the time. It was just a tad more dramatic because of the moderately low platelet count. No panic - just put direct pressure on the lip while restraining a child in agony. He went to Grandma for comfort, which is fine by us.

>roll eyes here< Kids. What are you going to do?

Thursday, August 20, 2009

Beach!

No pictures, but nothing missed. The Boy was less afraid of the sand than last year, trying to suck a sandy thumb notwithstanding. Terrified of the water, tho. Younger Bro was happy with the sound of the waves and with the feel of the sand and sun. Go figure.

Family vacations should be fun if this keeps up.

Small Miracles

The Boy slept in his own bed all night long! He even woke up a couple of times and put himself back to sleep! He finally woke up at around 6, which is pretty darn good for having gone to bed and FUH-LIPPED out at the process at 9!

We are very happy and proud of him.

Wednesday, August 19, 2009

Bonus fun!

Today, The Wife and I took the boys for a walk after dinner. We went to the comic book store, which is the Happiest Place on Earth! (Forget Disney OR Tijuana.) Afterwards, we took the long way around to get back home, stopping for treats at the Quick Chek. I bought a big chocolate chip cookie and a Vitamin Water. Is that contradictory?

The Boy, The Wife, and I sat on our front steps, ate the cookie (not The Wife, who's on a strict detox diet until The Boy's birthday party), and played a bit. Our neighbor two houses over was walking with her grandkids, two boys aged 3 and 2. They were riding tricycles. The Boy was THRILLED to see them! He was so happy and excited to be around more small children. It was really, really nice to see.

He even took his bike out to ride for a little while, which is something he does not do often. He can't reach the pedals yet (maybe we need a smaller tricycle?), but he tried nonetheless. He had a fun time chasing the other boys around on their bikes, running after them (in his own style) as they went back to their Grandma's house.

The striking thing to me is the difference between The Boy and the other boys. The younger one is three months younger than The Boy, but he might as well have been a year older. He was taller and thicker by a bit, and so much more physically active! He was running and pedaling and jumping. The Boy doesn't do any of those things, except for run (kind of).

It did my heart good, to see The Boy playing and laughing and excited. He ran around quite a bit, and I could see him thinking about and imitating the other boys' actions. It really makes me want to spend more time around other kids - if we can.

It also makes me really think, and to become more than a bit sad. At the time of his diagnosis, The Boy was sleeping in his own bed; cruising around quickly; and very tall and thick for his age. I know that wondering is useless, but I wonder what he'd be like. I can actually see him: big and strong, with unruly brown hair, running and jumping and riding his bike all over the neighborhood. I see him being a leader among the other kids, and really enjoying playing with others.

If only.

Younger Bro update

One of the unfortunate side effects of The Boy's difficulties this summer is that I have not had a lot of time to spend with Younger Bro. He doesn't know me, at 6 weeks, nearly as well as The Boy did, and vice versa. Pretty much every time he was handed to me, or I picked him up, he would howl like a banshee until I passed him off to The Wife. It was unfortunate, but I figured it was part of life. You know, the kids are sometimes in Mommy phases and sometimes in Daddy phases. I figured this kid was in an extended Mommy phase.

Not so much.

Long story short, it turns out that thrush, a fungal infection, had set in my wife's system. It's not a HUGE deal, healthwise. I get it all the time in my throat, as a result of the oral steroids that I take. No matter how carefully I rinse, or what I rinse with (water, Act - a "base" rinse, Listerine, etc.), the fungus sets in about every five or six months. But, it got into my wife's system and Younger Bro's food source.

A couple of little pills, a change in diet back to the detox no wheat no dairy no nothing, and within 24 hours, he was a different little man. The change was extraordinary.

I've always been good with babies. Like, my nickname is Baby Tranquilizer. Pretty much any screaming baby that gets picked up by me calms down pretty quickly. I was actually losing faith in my abilities before this medical issue was diagnosed and dealt with.

We know that order was restored in the universe: when Younger Bro was screaming yesterday afternoon, I picked him up and cuddled him. He sighed, farted, looked at me, then closed his eyes and went to sleep. As it should be.

With luck, this will help things get back to where they should be. I'm convinced that Younger Bro is going to be more of a Wandering Jew than his older brother is, which isn't a bad thing at all. It'll still be challenging for my wife, being alone with two small children in the Valerie Center or a small hospital room. But, if this thrush was really causing the wounds to stay open longer on her breasts and causing him to feed poorly and gassy, and causing him significant discomfort, then things should smooth out.

Tuesday, August 18, 2009

CT Scan: Stage Five


GeoTagged, [N40.76274, E74.30299]

Or, over-hydrate and wait. We are at the Valerie Center, waiting on the labs to return results of blood and urine samples. Two hours here, and we should be going home soon.

I hope.

My father and niece were here, which was nice. My dad brought coffee, which was nicer.

CT Scan Stage Four


GeoTagged, [N40.75873, E74.32351]

The scan was uneventful. Twenty minutes, and we're back in the recovery room. The Boy is awake - sort of - and eating a breakfast of grapes and rice chex. Off to the Valerie Center for hydration.

CT Scan: Stage Three


They finally came at 9:00. I kind of bitched-out our nurse after my last blog post, which wasn't great but was cathartic. The anaesthesiologist came, wheeled us down, and opened the room. The Boy FUH-LIPPED out.

There is nothing more heart-breaking than watching your screaming, hysterical child succumb to sedation. It just sucks.

45 minutes later...


GeoTagged, [N40.65169, E74.39942]

Nothing has happened. Still waiting. Two people have come and gone next to us since we got here. I'm about to lose my mind. Argh.

CT Scan, Stage Two

The nurse for us just as I finished the last blog entry. She took us to the next waiting room, where she took The Boy's medical history and list of medications. I'm happy that, right now, I can rattle off his entire litany of medications off the top of my head. I know that once marching season starts, the changes will make it more difficult, but I'll enjoy feeling like Super Daddy while I can.

Whenever I meet a non-Valerie Fund or stepdown nurse, I'm struck by how lucky we are in our caregivers. Not that this nurse isn't competant or knowledgable, but she isn't to the level of Tisch or Sharon. Then again, Sharon is a nurse of her own level.

The Boy is in his gown, which he enjoys wearing. Elmo is on, the violin episode. Did I mention that one of my students is here, getting some surgery? Hope it isn't on his mouth - he's a really good trumpet player.

Stage One

This morning, I woke up, updated iPhone, ate breakfast, got dressed, loaded the car. Grabbed The Boy, changed him into a disposible diaper, disconnected the IV, flushed his port, and put in a heparin drip. Loaded the car, stopped at the Cop Shop, drove to the hospital, checked in to Same Day Surgery (where the scans are), and now am sitting, listening to CNN or something, with a dozing The Boy on my lap.

Here we go!

Monday, August 17, 2009

Home infusion?

The Boy was hooked to an IV at dinnertime tonight by a home infusion nurse. He's going to get fluids for 12 hours prior to the CT scan, when they'll load him up with IV contrast to get a better, more detailed picture of the kidney and former-kidney areas. Hunting for those potential cancer cells, you know? Keep your fingers crossed.

Anyway, it raised an interesting issue - how does one keep a 2-year old on a leash that is REALLY PAINFUL when it gets ripped out? Well, we started by sitting him down for dinner, then leaving the house and going right on a walk. Two steps out of the door, and I whapped Mommy on the head with a car door, necessitating her sitting down inside and nurse the partial concussion that I'm sure I gave her. (I didn't. She's fine.) The boys were asleep inside of ten minutes.

We stopped at CVS, where the two sleeping babies were the star of the LONG drug line. I was asked, "Oh, they're so cute! Are they good?" I responded, "Well, the little one isn't. He pulled a knife on his brother, and we've had to bribe a few judges to keep him out of juvie hall." Whatever. She continued her half of the conversation by completely disregarding my participation, telling me that one kid is always... didn't catch the word, not good? ... in comparison. Whatever. Anyway, another lady was quite nice up until touching The Boy on the hand. Ummm... hello? Sleeping, BALD with no eyebrows two year old hooked to an IV? MAYBE there's something going on there? She was nice, just unobservant.

Anyway. I bought myself some M&Ms (because I finished the rough draft of my dissertation yesterday) and enjoyed the silence by eating my M&Ms and drinking a Vitamin Water. We got home, and The Boy snuggled with me while watching Sesame Street... until he wanted to get down and wander.

Here's the interesting thing: he KNOWS he's on an IV. He KNOWS that he can't get too far from the bag. It was at a point where, when going down the hallway, he walked backwards to keep an eye on the bag. On one hand, that's cool that he's aware... on the other, it's a shame he has to be.

He went down for the night at 10:45, thanks to his nap. We'll be up in six hours to leave for the hospital. Interesting, educational night for me.

Also watched the movie Changeling. Great flick. Not what I expected, but MUCH better. Just amazing.

Sunday, August 16, 2009

Milestones reached this weekend...

It's really quite amazing. When we're NOT at the hospital for weeks at a time, when we actually have sustained time at home to establish a consistent routine, the boys tend to make amazing growth progress. Who would have thought it? (Sarcasm. Maybe.)

The Boy had a really nice milestone week. First, over the last day or two, we've been spending a lot of time playing in the baby room. It was The Boy's room, but not really, because he never slept there. Right now, it's where the changing table and all of the boys' clothes are located. There's the changing table, a twin mattress on the ground, and The Boy's train table (last X-mas's present from Grandpa). I'll come in and sit on the mattress and play with one or two boys, depending on who's in a decent mood. The Boy has been fascinated by a "Elmo's Valentine" book, which has Elmo giving a valentine to the Sesame Street valentine box, then the valentine's adventures from one person to another until it eventually gets back to Elmo. Riveting reading, really! Anyway, it's fun for The Boy, because the valentine itself is removable from the book and can be insert in each page in the hand of whomever the story is discussing.

So, the big moment came today: while I was doing math work at the kitchen table, The Boy came up to me with a book and said, "Read!" He sat on my lap and listened (and participated) to the entire story! Then, he got another book and listen to it, then got the Elmo book and read it with me twice. The first book? "Pooh Loves You!" It was really cute and really nice.

The Boy has also been running around the house, to the best of his ability. It's still more of a quick trot, but he's definitely moving really quickly.

Today, he came up to me and said, "New pants!" When I said "The Boy, do you need new pants?" He said, "Yes! New pants!" He had pooped and wanted me to change his pants! He also responded "Yes!" to a couple of requests as to whether he had pooped. That's exciting. He even wanted to sit on the potty tonight! He didn't do anything, but he did sit there for four times through the alphabet song.

He's also been trying like heck to learn the ABC alphabet song. One of his toys - a froggie bus with letters all around it, the Learning Friends Phonics Bus - has the song sung slowly enough for him to hear and to learn! He only gets a few of the letters, but he seems quite intent on learning the entire song. He loves it when we sing it to him!

The other thing that's nice is the complete lack of television that The Boy is watching! While he has watched an Elmo thing each day, it's only one program and only around nap time. Today, we both napped through Elmo in Grouchland. I don't really mind him watching television - particularly in the hospital, when it is in our best interest to keep him still because chasing him around with the IV pole sucks majorly - but it was at a point, a little while ago, when the programs were on 23.5 hours per day. That's too much.

Just a nice week and weekend. Tomorrow, he'll go to the Valerie Center and get accessed, and home infusion will come at night to hydrate him and set up IV contrast for Tuesday morning's CT scan. Then, assuming all is well, chemo will start on Wednesday! That'll take us through Sunday or Monday, and I start pre-band camp while doing some work with my friends in North Jersey; then, The Boy's birthday party on the Saturday, and then band camp from Sunday through Thursday, and then the school year starts on the following Tuesday!

Saturday, August 15, 2009

Routine matters

It's amazing what we grow to see as routine nowadays. We were just finishing dinner: I was sitting talking with The Boy, and Mommy was attending to Younger Bro. I saw The Boy make THAT face, and - without thinking about it - I held his plate under his chin and caught his vomit. Mommy instantly got the Zofran ready, even though that's closing the barn door after the horses have already run away. She gave him the Zofran, I got him a new drink and a plate of Rice Chex.

No muss, no fuss. The only one that was upset was Younger Bro, because he Was looking for Mommy Snuggles.

I'm still sitting with him, and he's eating the aforementioned Rice Chex and some rice cake with honey - just the thing to settle an upset tummy.

Alphabet Puzzles

http://www.youtube.com/watch?v=n00uQ7z

I love my iPhone. This was at the Valerie Center.

Bad parenting?

http://www.youtube.com/watch?v=HYHpnf1_nzs

In my defense, he asked for it (literally).

The Boy spells his name!

The Boy asks for the letters in his name:

Younger Bro video

The youngest in Musical Daddy's family kicks around:

Morning Walk & Videos

We had a wonderful morning. The boys were up really, really, really early, so we went out for an early breakfast at the diner together. The Boy was a little grouchy at the diner, but he ate fairly well. He was excited to get an egg on a bagel. Younger Bro was screamy, like usual, but not horrifically so.

After breakfast, we walked over to the Farmer's Market in town, like usual. We finished there pretty quickly and headed over to the bank, which didn't open for another half hour. So, we sat around the big fountain in the center of town, where The Wife fed Younger Bro and I played with The Boy. (Well, I sat on the bench and talked to him while he ran around and played. Same difference.) We went to the bank, deposited a check, then went home.

All in all, a nice morning so far. Disregarding the half hour Younger Bro spent awake with me from 4:30 to 5:00.

Just catching up on some videos of the boys that I took with my new iPhone:

GREAT giggles from The Boy:

Friday, August 14, 2009

Testing some feed updates...

I just signed up with Twitterfeed, and just clicked the correct (I hope) "import blog" link with Facebook, to import my blog onto Twitter and onto Facebook. I'd like to increase my blog's visibility a little bit; partially because I want to get my message and The Boy's titanic struggle out onto the interwebs, mostly because I'm really, really egotistical and want lots of people to pay attention to me.

Not much new to report. The Boy is playing with a little Tonka truck playset, and The Wife is testing a new front carrier out onto Younger Bro, which would work much better if she'd keep walking around like a good little Big Person (in his opinion, natch). It's a very cute carrier, but he's not such a big carrier fan yet. That's okay.

I think we're going to go for ice cream. I deserve it, as I had a really, really busy day.

(Yes, I took a 30 minute doze while watching Sesame Street with The Boy at 5PM. Shut up.)

(That's supposed to be said with that whiny voice that that comedian who does the funny-looking ventriloquist dolls, like Jose the Jalapeno and the purple one. It's the purple one's voice. Wanna help out with the name of the guy?)

Silliness


GeoTagged, [N40.65330, E74.39939]

Right now, The Boy and I are having some major silly time. He's sniffing the carpet for some reason, after sticking his head in the pillowcase with the pillow inside.

He's very funny.

Sweet Face


GeoTagged, [N40.65302, E74.40210]

Younger Bro and I are out for a walk right now. The Wife and The Boy are napping, so I graciously volunteered to take the baby outside for a walk to allow them both to sleep. YB loves the outside and loves to go for walks, so he's good. I'm okay as well, considering how busy my morning had been. I did some analysis work on my dissertation, played with the boys, watched The Boy so Mommy could get an extra hour sleep (it was one of Those Nights last night), then went to school for a few hours and completely reorganized the percussion equipment. Now I'm walking, and I'll finish the analysis work and prepare to write it up. But, once it's written, the dissertation is done but for the editing.

In walking around with one baby, it's a lot easier to watch people as they examine us. Much like his older brother, YB causes many people to smile as they walk past. It's not hard to understand why: he's got the sweetest little babyface that you'll see, and those extra chins and chubby little cheeks are very attractive. People smile at him when they pass, even of they aren't aware of it.

The Boy is having a pretty good day. He has taken a couple big poops, had two fits (one major, one minor), and did lots of playing. His counts were still crappy yesterday: 6.9 red cells, 13 platelets and 0.6 white cells. That's not great, but he has had a runny nose all week, which hasn't helped. I think we're still on track for next week's chemo. We'll see.

He has a CT set for Tuesday. He'll be accessed at the Valerie Center on Monday, then sent home. A home infusion specialist will come at night and hook him up with a device to give him fluids and IV contrast for the scan. Should be interesting. Not really looking forward to getting to the hospital at the buttcrack of dawn.

All right. Someone is stirring. Back to the open road!

Thursday, August 13, 2009

I feel... cheated?

One of my friends said to me, earlier this summer, "Every time I see you, it reminds me that my life doesn't suck nearly as much as it could."

Normally, I'm able to keep a very positive outlook. That's thanks to years of therapy and reading different self-help books about education and personality and dog-headed stubbornness. Right now, I'm not feeling particularly positive or motivated or anything else. Because, quite frankly, my life does suck, and I've been cheated out of yet another summer.

Don't get me wrong. I'm thankful for the things that I do have going for me from this summer:
- a beautiful new baby boy
- an interesting and fun toddler
- a beautiful, smart, hardworking wife who tries to take the world on her shoulders
- a new iPhone (might be higher on the list)
- a Yankees team that plays relentless and powerful baseball
- friends that have been wonderful and amazing beyond any possible expectations
- family that is trying to step up and make a bigger difference
- a school community that is looking forward to getting in class with me
- a 90% completed dissertation, and 100% completed other classwork
- a second Master's degree that is allowing me to earn more money at work
- meeting such wonderful volunteers who have opened their hearts to help us

But, man oh man, it's SO easy to lose track of that in the course of other things happening.
- Younger Bro being readmitted to the hospital, at the same time that The Boy was in incredible discomfort and pain
- ummm... cancer?
- five weeks in the hospital with The Boy, of which I spent at least 75% of the nights
- two surgeries, which might or might not be covered under insurance
- hugely stressful family situation
- again, a hugely stressful family situation. It's that bad.
- a family that thinks my wife is, at best, lazy
- node on my vocal folds that has not allowed me to sing, which probably hasn't healed yet because I >can't< rest my voice
- the complete and utter loss of every single one of my doctors (general practice, asthma, allergies, ENT, dermatologist) because of a change in my insurance
- a newborn who loves to scream WAY more than his older brother
- a missed barbershop contest because of hospital stays
- ONE DAY of actual vacation - a trip to Sesame Place. No shore, no travel, no rest, no respite. Except for that day.
- three total days of exercise since June 20, leading to some moderate and persistent breathing issues

Do you know that I haven't even unpacked my summer clothes? There's two bins of clothing - shorts, bathing suits, polo shirts, t-shirts - sitting in the living room. I have a closetful of short-sleeved button down shirts that I haven't taken out yet. I've worn jeans and khakis (necessary hospital wear because of the relative temperature of the rooms) more often than shorts.

While I don't like swimming that much (10 years of lifeguarding can do that), it's a shame that I haven't gotten in any water at all this year - ocean, pool, whatever. Closest thing is the shower.

Man. I'll be okay, I know that. I'm just irritated as all hell.

Wednesday, August 12, 2009

Lazy boys


GeoTagged, [N40.65330, E74.39939]

It has been an uneventful day. Thank heaven for that! I walked to the doctor's office for me, then to CVS and the comix book store. Hung out at home until a quick trip to school to pick up a sousaphone. Now I have a few hours before marching band rehearsal.

The Boy has been very cute today. He told The Wife when he had pooped, which is a tiny step towards potty training. That's about it.

My wife was chatting with someone from Horizon about some insurance stuff, and the lady with whom she was speaking also had a child who had a Wilms Tumor! Turns out that the child - who was on similar medicines but more serious dosages - would occasionally vomit just like The Boy. She wouldn't feel sick before or after, and there was rarely warning (the girl was 6 so was verbal, unlike The Boy). It just happened. So, I feel a little better.

Tuesday, August 11, 2009

Toddler Tuesday


GeoTagged, [N40.68592, E74.33055]

It's actually kind of nice to deal with normal toddler problems, considering that The Boy's counts are in the toilet right now. Here's the bullet point list for the day:

Colored on the refrigerator with a brown crayon

Threw a remote control down the stairs

Threw four major fits today, including the one he's on as I write this

Played shy and clutchy durig physical therapy

Shortened the toilet paper roll by quite a lot

Set the kitchen table with help

Ate a full meal right after puking up the previous meal

Sigh. Me with my chorus rehearsal tonight... good luck, Mommy!

Monday, August 10, 2009

Just another Manic Monday...

Sunday was a wonderfully slow day at the Musical household. We woke and had breakfast, and I jogged and took care of the boys while Mommy and Grandma went grocery shopping. The grandparents left soon after lunch, and we did not much of anything for the rest of the day.

We knew The Boy's counts were going to be low, so we didn't go anywhere special. I took the boys for a walk during the afternoon, which was fun; I used the time to catch up with some friends on my new iPhone, and we were out for a solid hour and a half. Younger Bro slept through the whole thing, and The Boy was quite happy just looking at stuff and hanging out.

At night, The Boy had a huge vomit attack and threw up most of his afternoon snack. Ironically enough, once he had his Zofran and helped everything get cleaned up, he was hungry again. That tells us that he's not feeling sick but suffering from a side effect of the chemo. It just goes to show you that my thoughts on parenting have changed quite a big. Fifteen months ago, we would have freaked out and had a major panic attack about that much vomit. Now? No big deal. Younger Bro goes into his chair, Mommy strips The Boy down and puts him in the tub for a quick bath, and I get the paper towels, Clorox wipes, and dustbin.

We spent the rest of the night trying to put the family issue from the Bris aside. Didn't really work, but I think we can push this aside until the end of The Boy's treatments. Dr. Rifkin had some good suggestions that we are going to try to implement for the next couple of go-rounds of hospital time. It'll be interesting to see if it works.

Today, we spent all day at the Valerie Fund. The Boy had a platelet level of 6 (supposed to be around 75 or 80, I think), a red cell count of 6.6, and a white count of 0.3. All counts there suck really badly. He got red cells and platelets and lasix, which meant that we didn't get home until 7PM. Sigh. While I did get to do some good work on my paper, it was still a horrendously long day. It's just... well, boring. The Boy slept from 12:30 until 4 because of the Benedryl, which is when I worked and when I took a half hour's nap or so. Before and after, we just played. In the morning, he was very clingy and cranky, which wasn't too fun for him. In the afternoon, he really enjoyed wandering around and playing with the toys.

Tonight was surprisingly easy. I took the recycling and garbage out, and we cleaned the kitchen up. The Boy helped me put some of his toys away, and he went to bed without much more than token complaining. Younger Bro had a fun night as well, and I got some nice snuggles. He has such a cute, round face!

Tomorrow will be another slow day because of The Boy's low blood counts. I'm hoping to convince him to start climbing up the ladder in the swingset again, because #1 it's fun and #2 it's good for him. We'll see.

Now, the dilemma. I've gotten NO physical activity today because of the hospital time. Do I do a light jog, or do I just go right to sleep?

Saturday, August 8, 2009

Did you know...


GeoTagged, [N40.92652, E74.18454]

Weddings are loud? The interesting thing is that we're seated at a table with some of the "old" people - parents of students and the parents of the best man. Where we are sitting, the only thing we can hear is bass and a little reflected treble, meaning that any individual song is unintelligible, despite being played with the volume of a jet liner.

You know you're getting old when the volume of music is noticable.

At the wedding


GeoTagged, [N40.92652, E74.18454]

Standing for the Best Man's toast right now... The Wife is having her first drink since... let's see... pregnant, nursing The Boy, pregnant... August of 2006. That's three years! This is my first drink since... um... New Years Day.

We're having appletinis, in honor of JD in Scrubs.

The Boy is okay, except for a vomiting incident an hour ago. Let's see: chemo? concussion? We'll find out.

Beautiful day for a wedding...

The boys are at home with Grandma and Grandpa. We're at a wedding up in north Jersey, having fun. The ceremony is over, and The Wife just finished pumping. We called home, and Younger Bro took a bottle well, and The Boy is fast asleep on Grabdma's lap. We have two hours to kill in Little Falls. Any suggestions?

Interesting doesn't mean good.

Today, The Wife & I took the boys to breakfast at Rise 'n' Shine, the local breakfast place that we stopped liking for a while but like now. Younger Bro cried the entire time he was there, as has been his habit. (He likes motion, and when he's motionless and awake, he's unhappy.) The Boy ate a nice helping of eggs, and I had some wonderful french toast.

After breakfast, we did a whole lot of nothing for quite a few hours. There was some walking around, lots of snuggling, a nap, some cleaning (not by me), some playing outside in the sandbox and in the driveway and in the grass, and a snack of rice chex that was gleefully eaten.

Highlight of the day, positive division: I got an iPhone!!!!!11!!1! It's awesome. I updated all of my contacts, which took a few hours, but it's up and running. Next bit is to figure out the ringtone thing - not buying, because, with over 17,000 individual pieces of music in my library, I have a religious objection to paying for ringtones. I'll get it eventually. I'm so happy about this... I've wanted one for a long time, and my in-laws are helping with the increased data plan costs, which was a huge holdup. w00t! w00t!

Highlight of the day, negative division: The Boy fell down one of the seven-step half-flights of stairs. Don't know how it happened - I was looking at my iPhone, and Grandma was bringing a diaper to The Wife, and Grandpa was asleep, and THUD, SCREAM! Making a long story short, he thumped his head quite nicely on the steps. This necessitated a trip to the emergency room, because Dr. Kam (yes, we called the Valerie Center) is concerned about the effects of an injury and a low platelet count. His platelets were at 30 yesterday, and 23 today; that's REALLY low. We sat in the emergency room for three hours so they could take blood for a CBC, examine him a few times, then send us home. Basically what we expected to happen, but better safe than sorry.

So much for my birthday cake, exercising, and getting some schoolwork done. Just waiting until the end of the 14th inning, and then I'm going to bed. 0-0 score between the Yankees and the Red Sox, in the bottom of the 14th inning. Horribly boring if you're not abaseball fan, but absolute heaven if you are.

Thursday, August 6, 2009

Happy birthday to me...

While it is true that I turn 35 years old today, chronologically speaking, I strongly resent the implication that I'm growing up. No way in heck am I growing up, except in a few ways that we won't talk about, for once.

I love my birthday. I love a day where I know I can be special, that people can come up and say happy birthday, that I can get presents from people. I start lobbying for birthday presents, typically, around December 27. I'm an obscenely easy person to shop for, as I say, "Ooo! That would make a great birthday present!" when I see something I would like. Then, I remind anybody who'll listen for two weeks afterwards that I would like it.

For instance, I got a book today that is J. Michael Straczynki answering some 4000 questions about his science fiction writing and Babylon 5, which he created and is, to date, my all-time favorite television show. I told The Wife that I wanted that, for the entire month of March. I also got the Coraline bluray, which I had been threatening my wife that I'd buy for two weeks before she bought it in order that I shut up about it.

I have a big present coming tomorrow, but I don't know what it is. It's been in a box on the dresser in the guest room, but I'm not one to peek. I much prefer the surprise and anticipation. (Hard to believe, I know, but I don't peek at presents. I worked that out of my system when I was, like, 9.)

It was a nice day.

Wednesday, August 5, 2009

Oh, what a day! A great, great day!

Today didn't start particularly auspiciously. After we finally settled in bed - at 5:30AM, natch - Younger Bro woke up at 6:15. Considering that I had been asleep for 45 minutes, I'm not sure that I was as nice as I could have been when I asked The Wife to take him elsewhere so that The Boy and I could sleep. At 9 o'clock, The Boy woke up and toddled to the kitchen for some breakfast, dragging me along via vocal volume. After breakfast, The Wife left to go to the grocery store, and The Boy promptly yakked up all of the juice he drank at breakfast time. Only a little bit of the actual breakfast (eggs), so that was good.

Regardless, we toiled on through the day. I took the boys to the comic book store, and The Boy entertained himself the way he usually does: by taking the "New This Week!" signs off of the shelves and bringing them up to the shopkeepers. I try to tell them which books that they were removed from... they're not TOO annoyed by him, because #1, he's cute, and #2, I've been a steady customer for five years and counting. We got home, had some food (which he kept down), and I got the boys into some "I Love Mommy!" t-shirts that I bought back in March and saved for a special day, like today. Just in time for Mommy to get home!

We loaded the car with the boys and supplies and headed out to Sesame Place. It was truly wonderful! They were very accommodating to us, considering The Boy's situation. They gave him an orange bracelet which let us wait by the exit and get on rides with no waiting. Considering his size, we only went on one "ride," the carousel. He was concerned at first, but I think he really enjoyed it. We did that ride twice, once right when we arrived and once right before the parade. The band also let us get to the front of the photograph with characters line as well. (Can't wait for Disney, with this one.)

We went to see the live "Elmo's World!" show, and it was enchanting. The Boy was hypnotized by the whole thing, absorbing every last moment of seeing his hero live and in person. The best part? Younger Bro got tabbed to be the baby in the "Let's ask a baby!" Funniest part: Elmo said, "Baby, how do you pretend to be a fish?" Younger Bro responded with the fishy-type face he makes when he roots for food, considering he was hungry. It was really funny. He earned a kiss from Elmo, and I got a kiss, also.

The parade at the end was also great! The Boy was dancing to the music, which is the first time I've seen him really initiate and enjoy that dancing. He enjoyed looking at all of the people, seeing Elmo, Abby, Ernie, Bert, Big Bird, Cookie Monster, and Telly walking around on the street and dancing.

End of the day had both boys poop in the car right as we hit the nearest Starbucks, which meant two in-the-car diaper changes. They both slept the entire ride home, and they and Mommy settled down for bed really quickly. I'm still awake, putting pics up on facebook (click for the link to the photos), and blogging a bit. Considering the medium Starbucks I had, I might get some schoolwork done while I'm awake and all is quiet.

I know we might regret having gone, later; the vomiting is a concern, and his legs are bruising in that "i need platelets" way, and his blood pressures haven't been great all week. But, it was such a wonderful day. I think The Boy was just having the time of his life, and I'm positive that he now believes his friends on Sesame Street are real people like you and me, which is hugely cute. We might even get a season pass next year, which should take us 2010 and 2011!

4:30AM, and going strong...

We had dueling criers today at 2:30AM, as Mommy got up to go to the potty and The Boy freaked out, waking the only-dozing Younger Bro and setting up a high-pitched, high-volume duet. The Boy didn't actually fall back asleep, and thus we sit at 4:30AM, with him eating cereal and me cleaning out the TiVo. I probably should be doing work now, but I'm pretty well exhausted and not concentrating very well.

Now, The Boy is telling me where his body parts are - eyes, chin, ears, nose, belly, teeth, shoulder, port. He's really quite charming, even when being kind of... well... a toddler. The Boy does enjoy his rice Chex, though.

We're tentatively planning on going to Sesame Place tomorrow, assuming that The Boy's health is acceptable. He had a great day, counts-wise, on Monday; today was a good day, up until he puked up his dinner. Granted, that could have been normal toddler random-pukes, which happen; it could have been something caught in his throat, or that he ate too much; or that something just didn't agree with him. Not sure, but we'll keep an eye on it. If he starts puking again tomorrow, or is just not himself (considering that he's been awake for 2 hours in the middle of the night, it'll be interesting to see exactly what he'll be like), then we'll think about bagging the trip.

(He's now whining that I'm not giving him the TiVo remote. He should know better. The remote control, in this house, is Musical Daddy's to wield. It's my Sceptre of Power, the One Ring. He ain't gettin' it.)

I'd like to take him, because I don't think we're going to get an actual vacation this year, unless we get absurdly lucky with counts in a couple of weeks. Last year, we got a couple of days at the shore prior to a chemo visit. This year, not entirely sure if that's going to happen. It still might, at the end of this particular cycle, considering that we can just bleach the hell out of the hotel room, but I'm not particularly optimistic.

Cute thing: when we burp Younger Bro, just like when we burped The Boy, we talk about hunting for "bubbles." Air bubbles, of course. Now, when we burp Younger Bro, The Boy heads for the little bubble dispenser and asks to get some bubbles of his own.

Great. A grape just got caught in his throat and brought some friends back. Got to go. (This doesn't count towards canceling the trip. This was a "caught in the throat" thing.)

Monday, August 3, 2009

The Calm Before... What?

We had another couple of really, really nice days. Since Saturday, we can almost pretend that... well... we're a normal family, or something. This sort of normal "boredom" - spending all day chasing after the kids and keeping them involved in something reasonably productive and non-trouble-causing - has been a wonderful change of pace.

Sunday, The Wife passed Younger Bro to me at around 6AM for my turn with him. She's been handling all of the nighttime feedings and things without any extra help, so she'll give him to me for an extra hour's sleep. We had a nice breakfast, where The Boy ate - like - two bowls of cereal at the same time. That is, one bowl of strawberry cheerios and one bowl of rice chex.

We played for a bit, napped, and that's when This Picture was taken. It's interesting how, as far as we've evolved, we "regress" to sleeping in piles of people. Honestly? I love it. I love that my boys, so far, want to be close to me. Napping with The Boy - and future naps with Younger Bro - are highlights of my life. We then went to Woodbridge Mall to walk around.

This was not a well-planned trip. I left my wallet (with gift cards) at home, and we left butt wipes and hand wipes and snacks for The Boy at home as well. Considering that he didn't eat lunch, we were concerned; but, we bought him a cereal bar and some animal crackers, and he didn't eat any of it. Whatever. We walked around for a couple-few hours and went home. Didn't buy much; a nutritional supplement for The Wife and some books on clearance for The Boy. (One is called "Daddy's Bald Head," which is appropriate.)

We took a nice, long family nap when we got home, and that turned into dinner. The Boy was awake until around 9:30 or 10, doing not much of anything besides playing and getting into impy-type trouble.

This morning, same thing with Younger Bro. I walked him around, and we fell back asleep while watching "Angel" re-runs, like I used to do with The Boy. Another nice breakfast, with The Boy eating his normal breakfast. The Wife, The Boy, and Younger Bro went to the Valerie Center, which wasn't such a hot move. She had a real time with the two of them, which will be an interesting preview of what's going to happen during the school year. I went to my school to get some work done, and I had a very productive couple of hours.

I got home at exactly the same time as The Wife and the boys; literally, we pulled into the driveway at the same time. I took The Boy, and we rested for a little while until lunch, then the physical therapist came. I updated Younger Bro's bris presents list and collated some recycling while they worked, then we all went outside and played. The Boy had a minor meltdown right at the end, which is the cue for nap; and he and I napped for 90 minutes or so. We got up and played until dinner, then we all went out for another walk.

Because The Boy's counts were so good, we actually went to the park. We ran into a mom and a daughter that we had met a few times back before the diagnosis, and we updated her on the situation (and why we were never around). It felt really good to let others know about our situation! More importantly, The Boy had a REALLY good time playing with the girl, who is a month older than he is.

It was interesting noting the difference between the two kids. The girl was much more physically advanced than he is: she was running and jumping, climbing up the (shallow) slide, and moving much more confidently. The Boy was able to show off his knowledge of letters and numbers to her, and she was impressed; he, in turn, was amazed at how well she went up and down the slide. He tried to imitate her as much as possible.

It was SO nice to see The Boy playing with another kid! He likes people, but he's never around people his age. It's amazing how much more soft-spoken (in volume) he is than most of the other children, and how much more deliberate and gentle he is. I think a lot of that is his shyness around strangers and unfamiliarity with kids, but I think it would nice to have a son that would be nurturing and loving, like he is.

Everyone is in bed right now, and I think I'm going to join them. It's been a really, really nice couple of days!

Saturday, August 1, 2009

Busy busy...

So far, we're having a good time playing "Pass the Baby" with the two boys. Last night, I held Younger Bro until about 1:30, then handed him off to be fed by The Wife, and I took care of The Boy. At 6, we switched back because Younger Bro was ripping at his food in a painful manner.

Eventually, we got everything settled, had a nice breakfast at home, then walked downtown the farmer's market and comic book store and library. We got home, and Mom took The Boy out for a ride. After they got back, all settled down for a nice nap.

The Boy's belly is upset, because he ate nothing but fruit all day today. Thank G-d for prescription Pepcid! He's had some fruit poops, which don't feel good at all. His blood pressures were pretty decent all day, except for immediately before he took his medicines.

Still, it's busy keeping up with both babies. Busy, but fun. They are handsome young men.

Forgot to say - YB was 11 pounds, 1 oz and 23 inches at his one month checkup on Friday. Big, strong dude!