Monday, November 30, 2009

First Night

Last night was my first night at the house without my family. Only a month to go, right? Well, a month and a year's worth of work.

There's more stuff here than I remembered, but most of it is stuff that we're going to donate / sell / give away. We're going to give away the crib, the old car seat, and the toddler bed, try to sell some bookshelves, an air conditioner, an air filter, and a carpet steamer that we never figured out how to use. All of my clothes are still here.

The to-do list is pretty large. Wash the walls all over the house. Touch up the paint in the bedrooms - don't have to repaint them, thank G-d. Spackle, sand, repaint the living room, dining room, kitchen, hallways, downstairs room. I'm not painting the walls in the downstairs living room, because the wood paneling is kind of kitschy and retro. Lots of stuff to throw away. Recycling tomorrow night. Whew.

Last night, I kind of wandered around the "empty" house, finding things to throw away and moving other stuff around. I'm a little bit overwhelmed right now, so I'm in the process of making a list a checking items off of the list. Sigh.

I hate being away from my children and my wife. I miss them already. Not having a wife and little people to snuggle... it's no fun!

Sunday, November 29, 2009

Funny Boy

So, I have these little red ear plugs (been sleeping with plugs for 15 years - I'm a very light sleeper) that we get from the hospital. They come in plastic bags. Last night, during a break in play time, The Boy comes back in the room with some candy that he had acquired from Grandma.

He climbs up onto the bed and eats the candy. A minute later he holds a piece out for me. I open my mouth, and he pops it in.

He ate candy. He fed me an ear plug.


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Last Day

Take two on this, as BlogPress froze and neither saved nor posted this entry. Today was my last day here, as I leave tomorrow to head back to New Jersey to finish staging the house and my last 17 days of work. I'm not looking forward to this, as it's a really long time away from my family. I've been away for a day or two, but never dreamed of being away for a month!

Still, today was a nice send-off day. The boys let us sleep past 8, which almost made up for the hours awake in the middle of the night. Younger Bro was particularly cute at 2:30am, playing with his toes after originally falling asleep in my arms. We spent the morning playing around the house.



At lunchtime, we all got a little antsy and went downtown for a walk. We went to Dunkin Donuts for some coffee, then spent some time walking in the sunny, brisk weather. The Boy fell asleep during the walk, and we successfully transitioned him to Grandma when we got home. YB, meanwhile, fell asleep on the floor when we got home, allowing Mommy and me to do some necessary unpacking and rearranging.



The boys woke up and did some good playing with all of us. The Wife and I went out to dinner, using a gift card given by a friend. It was nice to talk about other stuff rather than the move and how our life sucks! I'm glad we went, because I had kind of forgotten to eat most of the day.



When I got home, I got some quality Boy time. We wrassled for a solid hour! It was nice playing with him as if he was a normal 2-year old! He'd tackle me, and I'd fall over. Then, I'd tickle him helpless, and we'd both laugh hysterically. Repeat. Many times. He was hooting and hollering the whole time! There's nothing quite like a happy toddler for making noise.

Bedtime was a bit


of a disaster tonight, as the boys did their tag-team crying thing. Menta note: moving AND changing sleeping arrangements is not smart. One at a time, folks! Still, it was a great night.



I know this month will be hard. There's a lot of work to be done, and it's impossibly difficult to imagine being away from him for so long! He needs me; I need him more. We'll web chat, but it isn't the same.

I also know we're doing the right thing. The hardest lesson to learn has been the necessity of large amounts of man power, which we simply don't have in NJ. That doesn't make this physically easier, but it does make it somewhat emotionally easier. I just hope my sons and my wife remember me when I get back!



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Saturday, November 28, 2009

Some pictures

The Boy's formal Thanksgiving attire:


Younger Beo, in his highchair for the first time:


One Boy Wrecking Crew:


Two-fisted eating:


Younger Bro plays with a friend:


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Friday, November 27, 2009

Busy couple of days...

So, Tuesday afternoon, Grandma arrived and kicked me home at 3:30. I picked up the truck at 5:30, and had a devil of a time backing it up into my driveway. No worries; finally got it.

Wednesday, I ran out of school to start the loading procedure. Rob, Taylor, Joe, and Alex came by to help me load. They all spent a minimum of 2 hours, up through around 5 hours for Rob. It never ceases to amaze me, the depth of people's generousity. The movers arrived late - closer to 3:30 than to the proscribed time of 2:00 - but worked amazingly efficiently, having the 24-foot truck packed floor to ceiling in under 2 hours! Granted, it helped to have three to five other people helping out.

I drove the truck out of the driveway at 6:00PM, and I arrived in Pittsburgh (370 miles) at 1:30AM. I slept until 7, then grabbed a quick breakfast and started organizing things. The stuff came through remarkably well; the only losses were one leg of the boys' dresser (snapped off), part of the bedframe (metal twisted up), and the piano's tuning as we non-professionals tried to move it inside. All in all, not bad, and the dresser could have been solved by taking the legs off earlier.

Six guys helped us unpack the truck. We loaded lots of stuff into my in-law's garage (I guess it's "our" garage now, but that hasn't sunk in yet). We loaded lots of furniture upstairs. We loaded lots of stuff into a storage locker. There's still lots of stuff in the house in New Jersey - all of my clothes, some holiday decorations, the pulley attachment for the gym, my computer desk, my comics, the crib, the toddler bed, The Boy's bed (there's a trundle bed that he's using right now), and my formal clothes (barbershop uniforms, tuxedos, that sort of thing), tools and painting supplies, and - most importantly - my television, TiVo, and Playstation. In short, another truck's worth of materials.

My assumption is that, when we finally LEAVE and the house is on the market 24 hours per day, I'm going to leave a few things behind - some of the area rugs, some towels for the bathrooms, things like that. Things to make it looks a LITTLE bit like a home. I'm not sure what we're going to do about the swingset, but one thing at a time. Our storage locker is big; it can likely hold all of the pieces of the swingset, if we can find someone to break it down & re-assemble it.

I will be leaving on Sunday, getting a ride from a family friend of The Wife's. When I get home, I will begin the procedure of re-painting, re-organizing, catelogueing and giving away the stuff that needs it, and fixing anything that needs to be fixed. With luck, I'll be done by New Year's.

At Thanksgiving yesterday, we had a very nice dinner. The Boy ate and ate and was happy. Younger Bro sat in his high chair for the first time, playing with a chew toy Aunt C bought for him. I think this is going to be a happy time.

Tuesday, November 24, 2009

Just moved upstairs




Just got moved up to pediatrics. The Boy is in good spirits, once I convinced the nurse to actually give him Tylenol. She was taking his temperature under his arm, but not getting the thermometer far enough underneath, so he wasn't reading as febrile. Sigh.

Daddy knows best. When will they realize that?

He's happy, with a treat and All-Star Alphabet playing.

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Plan B

So, The Boy is being admitted. Don't know how this will play itself out; the doctors know of our moving situation and are trying to accomodate. They also care about The Boy and don't want him in danger.

Tentative plans: Grandma is already on her way. We put her with The Boy & Mommy with Younger Bro. I load and drive the truck out tomorrow, then drive Grandma's car back on Thursday after everything is off-loaded. It sucks, but we can't have it too easy, can we?


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Colossal Timing

The Boy woke up crying at 3:30 this morning. Since that's relatively unusual these days, we figured - correctly - that he had pooped and wanted a new diaper. I changed him and put him back to bed, but stopped before I left. Long story short, he's running a 101 degree temperature and we're back in the emergency room.

Aside from the awfulness of his illness, this is awful timing. The entire house - and I mean everything - is packed for the big move. Grandma had a 10:00 flight to make the drive west this evening with The Wife and both boys. I'm supposed to pick up the truck at 5 in Plainfield, and the movers are coming tomorrow at 2. The hospital bag is somewhere in the garage, buried under or behind a ton of packed boxes and furniture. Not to mention that we don't have clothes out for anyone right now...

And, the fact that I have to get my concert notices out this week, and schedule my oral exams for my math degree, and the fact that hospital policy means that I'm going to be here 24:7. More soon.

Sunday, November 22, 2009

Boxes, Boxes Everywhere...

Yesterday was a smashing success. It reminds me of how lucky and how blessed we are, because so many people love us so much that they're willing to spend large chunks of a Saturday helping us load stuff into cardboard boxes. Thanks to our friends who came out to work with us: Erik, Evan & Kate, Alla & Matt & the kids, Linda, Tracey & Cody, Uncle B. My garage is entirely full of boxes & furniture & stuff, and the former workout room is packed to the brim as well. The important stuff (furniture and piano) will be loaded first into the truck on Wednesday, then we'll pack as many boxes as possible into the truck. Looking at the amount of stuff, we'll need another truck, but it's worth it to us to do that. I mean, I like my lawn mower and my edger and stuff, and I want all of that stuff to be in Pittsburgh with us.

Besides, the people at my wife's now-former district were unbelievably generous in their contributions to help us. Her principal actually stopped by personally yesterday. Again, it shows us that G-d helps in unexpected ways. I think this might be a sign that we're doing the right thing, but it's hard to tell.

Funny story: The Boy was doing a kind-of duck walk, and I said, "The Boy, do you need a new diaper?" He said, "New diaper... you bet!!!! you bet!!!" It was very funny and very, very cute. He's been quite good at telling us when he needs a new diaper because of poop, and I'm happy about that.

Saturday, November 21, 2009

Breaking Radio Silence, Part Two.

If you haven't read part one yet, click here.

So, we had spoken about the move to Pittsburgh after The Boy received his relapse diagnosis last November. We decided to stay because of my family, because of the Valerie Fund, and because of my job.

The Valerie Fund has now, for all intents and purposes, been taken away from us. It is an amazing hardship to find caretakers with similar ideas about sterilization and germ avoidance as we have. This means that, two to three times per week, we are exposing the kids to new, strange germs. I know that we can't keep them in a bubble, but The Boy's care requires us to keep him kind of isolated for two and a half weeks out of every three weeks. It's not fair, it's not easy, but it is life and living for him. Beats the alternative.

I won't get into professional discussions here. I'll just say that The Boy's care needs have over-ridden my ability to stay in this particular job.

So, all of the major reasons for me coming back to, and staying in, New Jersey have dried up. The Boy's care has been difficult on my work performance, my family isn't in a position to help us (my father has been amazing, to recap), and the Valerie Fund has become difficult because of a lack of suitably-trained (in sterilization) adults to care for the two boys and my job. The Wife's job situation wasn't much better than mine, unfortunately, and it wasn't likely to improve soon. Damn economy. Factor in the immediate difficulties of taking The Boy for his checkups, and we have five more days to pack up all of our belongings and get them the hell out the door.

We'll move The Wife and the boys with Grandma. I'll go back to Jersey, and clean up the house: throw away all the trash, donate / give away / circular file anything we don't need in the next year or three, paint the inside, touch up the outside, fix anything that needs to be fixed, and put the house on the market on January 1. One of The Wife or myself will get a new job (I hope it's the wife), and the other will stay home with the boys. Grandma will be able to be more of a part of The Boy's care, and they'll be in a better financial place - Grandma will miss less work and not have to travel 350 miles for each chemo treatment. When one of us finds a job that we like, we'll buy a house and move close to work.

I'm disappointed in the way things have worked out, believe me. But, my life has really and truly hit rock bottom, in pretty much every aspect. (The words of a friend of mine, "Every time I see you, I remember that my life isn't so bad," echo through my head here.) Something has to change, or I'm not going to make it through the end of The Boy's treatments intact. My professional life, my musical life, my vocal mechanism, my general health, my incredible lack of sleep (operating on two nights of more-than-7 hours of sleep since August), my personal life, my relationship with my family since Younger Bro's birth... it all sucks, to be honest. Right now, I'm broken. It's time to drop back five yards and punt the football before irreparable harm to my body and to my spirit happen. I need to go somewhere where, every once in a while, I don't have to be strong; where I can rest, every once in a while; where I can see my wife more than one night per week; where I can see my second son for more than fifteen minutes per day; where I can re-establish some sanity in my professional life and development.

Is Pittsburgh that place? I don't know. All that I know is, it cannot be any worse than it is for me here. Something has to change, something has to improve. In baseball parlance, the worm must turn, and we're hoping that this is the impetus.

So, if you don't get many blog entries from us for the next several days, you understand why. Every moment of Wednesday, Thursday, and Friday has been spent packing and organizing and straightening: one pile of stuff to go into storage, one pile of stuff we'll need at Grandma's House, and one pile of stuff to go to the Salvation Army.

Wish us luck and G-dspeed, please. We need it.

Friday, November 20, 2009

Breaking Radio Silence

The cat's out of the bag, so it makes no sense to wait any longer... here's what's going on:

1) I'm quitting my job as of January 15.
2) The Wife and I have finished our paperwork to earn Pennsylvania teacher's certificates.
3) We've been actively hunting for new jobs out in Pittsburgh / Allegheny County.
4) In four days (Tuesday afternoon, to be specific), The Wife, The Boy, and Younger Bro will be permanently moving out to Pittsburgh. I'll join them after my contract is complete on January 15.
5) After they leave, I'll be sprucing up the house and putting it on the market.
6) The Boy's care will resume at Children's Hospital of Pittsburgh.

This entire situation has been developing for several months. Basically, what spurred this on is a combination of two things: The Boy's care, and our professional situations.

The past month has been utterly brutal, in terms of The Boy's care. I'm not sure if my words here on the blog have been sufficient in explaining exactly how painful this time has been for us. The week that he spent in intensive care ranks right up there in Crappiest Weeks Ever, and it took a physical, mental, emotional, and spiritual toll from me that I am still paying. We have been unbelievably blessed with helpers here, starting with my father (who lives near St. Barnabas), Alan Rubin, and the Chai Lifeline folks, and lately the folks from St. Peter's have rolled up their sleeves and done more than I can believe. Our friends have really stepped up, as well, and they've shown me how the worst of times can bring out the best in people.

Aside from my wife and myself, The Boy's primary caretaker has been Grandma. Don't get me wrong - he loves my father, and my father is one of the very, very, very few people that he willingly approaches with open arms. The Boy loves Grandpa SO much! But, Grandma has been his constant companion through this amazingly difficult chemotherapy regimen and through many of his worst sicknesses. In addition, The Wife's family has really stepped up to the plate in a major way. The rest of my family is not in a position to be able to help us right now. It's not casting judgement in any way, shape or form; it is an observation. My brothers have families, kids in college, economic troubles of their own, and family issues of their own with which to deal. The Wife's family has fewer issues and no other children, which means they have been able to afford participating actively in The Boy's care.

For instance, I was at the hospital 22 hours per day for the first seven days of The Boy's last hospital stay. That is just brutal. The Boy can't just sleep at the hospital with anybody; he doesn't work like that. In addition, we weren't able to dig up strings of volunteers this time. If we were in Pittsburgh, near my wife's family, then Grandma would have been able to shoulder more of the load WITHOUT a 360 mile drive. In addition, she knows more folks that are able to help in the daytime than we know here. This move is to make The Boy's care easier.

The straw that broke the camel's back and forced the move to happen NEXT WEEK is the hospital's new policy: no children under 18 unless they are patients in any inpatient or outpatient center, including the Valerie Fund. With Grandpa being diagnosed with pneumonia last Wednesday, he's out of the picture for the indefinite future. (His prognosis is good, by the way. He sounded MUCH better on Thursday, when we stopped by for dinner. He's moving very slowly and carefully, and he's coughing like the dickens, but he's recovering. He's just not going to be chasing around a 2 year old by himself for a while.) This means that, in order to have The Boy attend his 2 to 3 times per week checkups, we'd have to pass one of the boys - either The Boy in the Valerie Fund or Younger Bro outside of the hospital - to whichever caretaker we could find.

(Never mind the illogic of that - taking an infant who is kept in a sterile environment with his immune-compromised brother [safe from swine flu] and passing him from caretaker to caretaker [dramatically increasing his chance of getting swine flu]. It's bureaucracy, and it's only a shock that St. Barnabas waited so long to take a stupid, kneejerk, ultimately ineffective move. If Younger Bro is a carrier of the disease, then so is The Boy and so are his parents. So, by letting the parents inside the Valerie Fund, and by letting The Boy inside the Valerie Fund, they are allowing swine flu inside. Way to go, St. Barnabas. Nothing like making a well-reasoned, medically-sound decision.)

To be continued.

Whew.

Things sure move quickly sometimes. It feels, right now, like we are on a roller coaster with an indeterminate ending. It's not a feeling I particularly like. Let's just say that I'm looking forward to Thanksgiving and having a day to relax.

The Boy did not go in for chemo this week, like we somewhat anticipated. His platelet count dropped, from 40 to 37 from Monday through Thursday. That's distressing because we stopped neupogen on Monday, and his platelet count should be regenerating. Still, he's not in a "transfuse platelets" level, and that's good.

I wonder how far we are from the point of "discontinue chemotherapy because The Boy is not regenerating his counts." My guess is, not that far. My emotions are torn. We've known kids who end treatment early and stay cancer free; we know kids who have finished treatment and relapsed. We know everything in between as well. It's a version of Russian Roulette, with the stake being my son's life.

Not fun.

Thursday, November 19, 2009

Distressingly Interesting

The Wife woke up yesterday with a 101-degree temperature, necessitating a sudden change in plans for the day for me. I stayed home to help her care for the children instead of going to school. We played while she rested; I took the boys for a nice, long walk. It wasn't the most restful day she could have, because she's ultimately the only one responsible for Younger Bro (the whole breastfeeding thing, you know), but I did my best. Better than a sharp stick in the eye, as my father says.

Got some bad news: the Valerie Fund outpatient center is now, also, not allowing children under 18 except patients. This is a royal pain in our rear, and one that is causing us to seriously rethink a lot of things. Announcement on Sunday night or Monday.

I question the logic of being forced to pass The Boy or Younger Bro to a variety of handlers (all of whom have their own potential exposure to flu viruses) instead of being in a sterile, contained environment with their parents only. But, what do I know? I'm not a medical professional, just a guy with two master's degrees.

Monday, November 16, 2009

Bachelors

Stayed home from school today - still not feeling well. This is just the bounceback from two weeks in the hospital, I'm certain. Anyway, we used the excuse to keep The Wife and Younger Bro away from the hospital, and The Boy and I are at the Valerie Fund.



His blood pressures are really high, but that might be because of a medicine miscommunication. We'll see. Anyway, we are hoping that his white counts are high enough to discontinue neupogen. Here's hoping.


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Saturday, November 14, 2009

Finally, a Great Night

They told us about The Boy's discharge orders at around 3 o'clock. Long story short, it took around 2 hours for them to get their stuff in order, including sitting at the nurse's station for 20 minutes.

We sat in rush hour traffic on the way home, arriving at home at 6. The Boy had around 2 full servings of rice noodles with dip.


We played for a little while, then watched some Sesame Street. A bath was poorly received but desperately necessary, as The Boy was rapidly becoming the Smelly Kid. Little Stinker then fell asleep on my lap as we read a story and then cleared some TiVo space.

We went to bed around 10, an I watched this week's Fringe and Stargate Universe. Fringe is an over-the-top X-Files, and is very good despite moving the underlying big plot quite slowly. Stargate Universe is a spinoff of the Stargate SG-1 show, and it seems to be everythingthat Star Trek Voyager tried, but failed, to be.

We woke up at 8:30 this morning. It never ceases to amaze me that I can actually sleep nose-to-nose with The Boy, but never with anyone else. Weird, huh? He ate 3 eggs for breakfast, pooped on my lap, and is now watching Sesame Street. He found the abacus that Mommy bought for him on Thursday.



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Friday, November 13, 2009

Going HOME!!!!

We are awaiting the nurse to come, do temperature and neupegen, and let us go. Hooray!

We're not entirely out of the woods yet, because his counts still aren't the greatest. But we get a few days at HOME, and that's what counts.

The Wife and Grandma are in Atlantic City for the night, leaving us swinging bachelors at home to cause trouble and break stuff.

The Boy waiting patiently:



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Thursday, November 12, 2009

So Much For My Nap

Got to the hospital around 4:30, and after a half hour or so of playing, The Boy indicated that he wanted to rest. Yes!!!

Understand - it's been two full weeks of less than 4 hours of sleep per night, and two months averaging six or less. I'm three steps beyond exhausted, all the way to near-delirious at this point. So, when I knew that I'd catch a half hour nap, I was thrilled.

5 minutes into my nap, the burse came in, chattering away, and there went that. Finished up, got her out, went back to sleep.

3 minutes in, Aunt C called.

4 minutes later, dietary came with his dinner, and that was that.

Ugh. Left my wallet at home, so I'm not getting coffee tonight. Gonna be a long evening.


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The Boy & Me on New York Baseball Digest!

Sunday night, The Boy and I were on a great local radio show, "New York Baseball Digest," hosted by Mike Silva, a Twitter friend of mine. Listen for us at around 52 minutes into the show, as we tell The Boy's story and how meaningful the Yankees' win was for us. This is a neat radio show, hosted by a guy entering the business who has already cultivated some amazing contacts. He also really knows how to conduct an entertaining interview, my performance notwithstanding.

Here's the link for Mr. Silva's website.

Some hope, maybe?

Today, The Boy's white count was up to 0.8, which was ALMOST enough to do a differential - that is, counting the number of neutrophil white blood cells, with that number being separate from the immature white blood cells. That's a strongly encouraging sign, and one that means that we might actually get to go HOME HOME HOME soon!



The Boy had a pretty decent day yesterday. Some clowns came by to entertain him, and he was laughing hysterically at them - always a good sign! They were nice guys, as I ran into them on my way into the hospital. They gave him this awesome Little People construction toy, with two plastic boulders that went bouncing around the hospital room quite entertainingly.

Grandma is not feeling well - a minor, non-communicative infection has her flat on her back for a little while. Grandpa is out of commission with a relatively major chest infection. Younger Bro has a little cold and isn't doing particularly well. So, we're severely reduced in numbers right now. Wasn't that big of a deal yesterday - I went right to the hospital after work, sent the girls and the baby home, and spent the night with The Boy.

He is REALLY into sitting in his booster chair right now. If he was awake yesterday and last night, that's where he wanted to be. He'd say, "Chair! Chair!" Then, he'd say, "Tray! Tray!" Sometimes he'll eat, sometimes he'll play with some toys, sometimes he'll just sit.

He started talking some other words, but I didn't know what they were, so we played the "Guess What The Boy Is Saying" game, by me showing him different items until I successfully guessed what they were. To make matters more challenging, he gets frustrated and will sometimes say "No!" to the item he wants, until he remembers and asks for it again. It turned out that what he wanted was "Mustard!", and then "Meat!" to go with the mustard. I found some meatballs, and he dipped them in mustard and ate them.



We napped from 6:00 until around 7:30, and then he fell asleep at around 10:30 or so. Time in the hospital is very fluid, so we take naps when we can and worry little about bedtimes. This morning, I got up and left for work at 6:45, relieved by Mommy, who is now going to get Grandma to spend time there this afternoon.

I'm hoping and praying that we get out tomorrow. I'm exhausted and need to rest. Plus, Saturday, I have the Praxis teacher's exam to re-take and a very good friend's wedding on Sunday.

Wednesday, November 11, 2009

Some Encouragement

Yesterday, The Boy didn't have Tylenol at all. His temperatures stayed in the 98's all day. What was the big change? The addition of an anti-fungal medication to his cocktail. The doctor didn't think that it would have such a quick effect, but when The Wife was on it back in August for Younger Bro's issues, she felt better in a day as well.

When I got to the hospital after school and a nap, he was awake and more himself than he'd been. We played the "Guess what The Boy Wants for Dinner" game for a little while, which culminated with him dipping beef with gravy into mustard, chewing on it to get the flavor of mustard and gravy (ewww), then letting the meat fall out of his mouth (double ewww). I didn't stop that as quickly as I would at home, because I was thrilled to see him eat ANYthing, in any form. He settled on some Rice Chex to actually consume, which made me happy.

He's a nice boy, even if he definitely, most assuredly, two years old.

Tonight's my night at the hospital. I have a teacher's meeting after school, then home to shower & shave, then to the hospital until tomorrow morning. Need to give Grandma a break. This has been an absolutely brutal hospital stay, and keeping us all in shifts is the only thing that's going to keep us sane.

Tuesday, November 10, 2009

Pressure.

The new Bon Jovi album is on sale at Amazon.com today for $4.

As a native-born New Jerseyian, I feel pressure to buy it and to enjoy it.

I'm not sure how I feel about that.

Monday, November 9, 2009

More of the Same

Day 17 of the neupagin this cycle. That's frustrating, because his white count was at 0.4 yesterday, after hovering around 0.1 and 0.2 for the past week. The Wife knows of a young person whose treatment - the same plan that The Boy is on - just stopped around this time, because her counts just stopped regenerating. Chemo stopped, and the little girl has been NED (No Evidence of Disease) ever since. I think we might be getting a little bit closer to that stage. Granted, he's been sick - E Coli & other things, such as a possible C Diff - but this is getting ridiculous. This will be the third transfusion of platelets over the past week, today, and the third transfusion of red blood cells.

Grandma rode into town to save the day last night, and I got home at 12:30AM and slept in my own bed. It was weird, sharing a bed with someone who wasn't The Boy, and to NOT have nurses running in the room every hour or so to poke, prod, and otherwise annoy us. I'm still exhausted, but it was nice sleeping at home for once.

Grandpa is sick - whatever cold has been floating around, he's got. Ugh. We're operating under reduced forces. No word on a possible going-home date. I'm picking Monday of next week. This is a bad one.

Sunday, November 8, 2009

I Hate This.

Don't get me wrong. He's better today than yesterday, and I certainly love spending time with him. But, here's The Boy right now:




He's just sitting, not talking, not watching television, not interacting. Just peeling the labels off of a couple crayons. It's depressing.

I know that when I'm sick, I just sit around and mope. He is definitely my son in that regard. I just miss my happy, charming little man.

On the positive front, the rash is gone, and the lancing wound is much less tender. The fever is still raging, and they're treating him for C Diff again, despite negative cultures. Just can't win.

Grandma is coming in. Thank G-d for the reinforcements, because Grandpa is sick and my brother and his family are MIA. He'll get blood and platelets tomorrow, as those levels have fallen precipitously.

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Saturday, November 7, 2009

The Days Blend Together

When we have a string like this one, it's easy to think that the world is never going to change. The Boy is always going to be sick, I'm always going to be sleeping in the hospital, I'm always going to be apart from my wife, The Boy and I are always going to be apart from Younger Bro. Intellectually, I know that it's impossible. The fever is eventually going to go away.

One way or another.

But, today was one of those timeless, amorphous days. The Boy lay huddled in bed, feverish and grumpy and clingy. I spent most of my day in bed with him or sitting nearby. When we looked up, it was 10PM, and I have church work in the morning.

He's just not getting better. Dr. Kam says that this is within the bounds of normalcy for a neutrapenic fever, but it feels horrendous for our entire family. I've been here all week, except for quick stops home. And, it looks like next week is going to be the same.

Formless days. Timeless days. Days suspended in crystal, one moment the same as the next the same as the next.

Cancer sucks.


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Still with the fever

The Boy is still sporting a 101 degree temperature right now, and it's getting a little bit irritating. It feels like 95% of the issues are being caused by the lesion on his diaper area, and i wonder if much of this could have been averted.

It's frustrating, truly. Every time I feel like he should be getting better - like this morning, when he got a solid 7 hours of uninterrupted sleep before we did the diaper thing - he takes a step backwards on the fever. It is concerning when an otherwise active and engaged 2 year old is just lying in bed and snuggling, with no books, toys, television, or anything.

I know it could be worse, but this is a bad one. I have a feeling we'll end up back in the PICU before we're done.

One of the other bad parts is our nurse today. They really bring out the B and C team on the weekends. This one tends to cackle like a hyena at the drop of a hat. Annoying.


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The Week in Pictures

The Boy with one of our favorite PICU nurses. Note the shape of his face; he's not as swollen as he'll get.


Here's Sumo baby. Note how swollen he is - here, he's carrying around an extra pound and a half or so of water. That doesn't seem like a lot until you remember that he weighs 26.5 pounds most of the time.


This's from today. He's much less swollen, but he looks uncomfortable and unhappy.


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Whew.

This has been one heck of a week.

On Thursday, I had no school. In New Jersey, they give off the first Thursday and Friday of November so that teachers can go to the Teacher's Convention, held in Atlantic City. Since there is absolute bupkis (meaning nothing) at that convention for arts teachers, we never go. Usually, this is preparation for marching band championships, which are traditionally held on this weekend. But, considering that we've been in intensive care all week...

Wednesday night into Thursday was much, much better than I expected. Ms. Clumsy Nurse only woke me up three or four times, which is much better than the previous night. This time, she didn't drag cellophane across the floor with her feet or straighten the medical supply cabinet at 5:30AM. I'm glad that habit was broken.

The Boy spent the entire day on Thursday in bed, alternating between sleeping, snuggling, and watching "All-Star Alphabet." That's a great Elmo / Sesame Street video, starring Stephen Colbert and Nicole Sullivan, who we know from her time on Scrubs. They asked for a chest x-ray in the afternoon. The pulmonologist told us that there were some patches on his lungs that might indicate the early stages of pneumonia, then she went home for the night and told us that we'd know more tomorrow.

Don't you love that? "Your son might have a debilitating, potentially life-threatening and crippling disease, but we'll know more tomorrow. Sleep tight." Frakking hospital staff. Every day occurrence for you, once in a lifetime for us.

Our oncologist told us that it couldn't be pneumonia, because The Boy doesn't have enough white cells in his body to create pneumonia. Thank goodness for small favors. I'm not sure what to think about that, except to note that the antibiotics are supposed to be good for pneumonia bacteria and for the e. coli and other stuff growing the lesion that they lanced on his scrotum.

The diaper changes have been something else. In addition to his scrotum being agonizingly painful to the touch, he's got bleeding, gaping diaper rash due to the excessive diarrhea thanks to the vancomycin and cefepime. Prior to Tisch today, we've needed two or three people to restrain The Boy during diaper changes, because he'd be flailing and thrashing and kicking while he screamed in agony. Tisch figured out how to use a spray bottle and a patting technique to get the area 95% clean; short-term sacrifice in cleanliness with medium-term gain in rash health and long-term gain in my therapy bills for NOT making my infant son scream in agony quite so often.

His fever is still here. All day today, his temperature has been alternating between the 99's and 101's. We did move out of the PICU and into the normal stepdown area, even if we have a crappy stepdown room - it's the room right next to one of the doors to the PICU and right next to the nurses station, where all the beeping and booping computers are located.

It's frustrating, because for every thing that seems to be improving, another problem or issue springs up. We're not leaving here anytime soon. Best guess used to be Tuesday; now it's Thursday or Friday. I don't think we're doing chemo next weekend like we had (very tentatively) planned.

Wednesday, November 4, 2009

The Next Night

Not so fond of our nurse tonight in intensive care. She's the same as last night; and she's as subtle and quiet as, say, a jackhammer or an air horn. She's another nurse who is fine at executing orders, but not creative or knowledgable to figure out why those orders exist.

Today was reasonable. His temperatures are stabilizing around normal, and his blood pressures are creeping back up as well. We might be close to getting out of this area, which would be nice - I sleep better in Stepdown.

The excitement came from a lesion on his scrotum that had to be lanced, which is exactly as much fun as it sounds.

Anyway, I'm here with The Boy, watching baseball. We've been lazing and dozing for the past couple of hours, so it might be a late night.

Picture of hospital, PICU life:



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Tuesday, November 3, 2009

Settling In

I'm heading to rehearsal tonight and probably to school tomorrow. The Boy is still pulling weird blood pressures - 107/24 was the last one - but the fever seems to have mostly broken and fallen to manageable levels.

He's still not himself: his activity level is still nill, and he's not keeping food down. But, I think the shivering, miserable little boy is done for the moment.

Still in PICU until the blood pressure thing works itself out.


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Intensive Care




We got moved to intensive care a couple of hours ago. The Boy's blood pressure has been averaging around 70/25, which is really low. That's concerning. Plus, the fact that they've filled him with fluids that he hasn't peed out yet (no real wet diapers for the past 12 hours), and that he's consumed around 200 calories since around 4pm yesterday...

The cultures are negative, so we're not entirely sure that it's a staph infection. That's good - don't want to go through another port replacement. Flu test is negative, but that doesn't test for H1N1. We'll see. I'm gonna run home in a few minutes to shower and change.

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Really not good...

By the end of the ball game, The Boy's fever was down. He was resting more-or-less comfortably, and he even drank a container of apple juice and ate some Fruit Rollup sticker strings.

Not so good around 4 this morning, when he started shivering again. His fever shot up from 99-something to a shade over 104.

And our nurse is as soft as a herd of elephants, slamming doors, bouncing off of things... so, one more night of 2 hours sleep.


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Monday, November 2, 2009

Hospital Time

We're back in the hospital. The Boy spiked a 101 degree fever, which has since spiked up to 102 and change. The poor thing is violently shivering under a heap of blankets and me, with that worrisome fast, shallow breathing.

The good thing is, the flu test came back negative. The bad thing is, we don't have a darn idea what's wrong with him.

I'm taking tomorrow from work so I can care for him. He just stopped shivering and slipped into a deeper sleep. Good.


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Sunday, November 1, 2009

Just Another Weekend

Had some unanticipated free time on Saturday, which was exceptionally nice. The Boy and I napped for a reasonable chunk of Saturday afternoon because of that, which we both needed.

Friday night, a former student performed a concerto with the Montclair State Orchestra. He was magnificent. Got home really late and got to sleep at 1:00, only to be woken by The Boy at 3 and Younger Bro at 5. I think I took him for a little while at 5, because I had a late start to the morning. So, when naptime finally rolled around, we were needing it pretty badly.

YB has gotten up at 5am for the past several days. Considering that he tends to go to sleep around 7:30, it's not surprising. However, it causes some issues. My wife is not at her best at 5am, and the two of them will usually keep The Boy and I awake. Not so good, when I have a school/marching day or a double-duty church day like today. I'd love for the 2 of them to head outside for a while, but that's not particularly fair to them. This morning, The Boy and I snuck off to his bed to finish the night's sleep. I think that might be the solution.

It's tied in the 9th inning of the World Series, but I'm exhausted and have a long day tomorrow. Sigh. Don't know what to do.

He's started playing in the bouncy chair again:


YB's costume: (We didn't dress The Boy up because of his counts. We put a sign on our door apologizing for the lack of candy; low immune child plus random children... not something to chance.)



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