Monday, March 22, 2010

A little too interesting...

So, Carmine's birthday party on Sunday was a big hit with my boys and with us adults. It was a mega-affair, as I judge them: a whole bunch of people, a community center common room, a face painting lady, lots of balloons, some fun floor padding, a pinata, and a crafts table. The food was wonderful, the people were really nice, and we had a great time!

(Don't get me wrong - it's not like it was one of those affairs where they overspent or anything. It was very, very tasteful and very, very fun and appropriate for all of the kids. I just don't know that many people with children like they do, so anything over 6 or 7 kids is huge to me.)

Highlight of the day: The Boy, with the Spider-Man face above. He actually requested it! He was in the chair, with getting a Batman drawing on his hand, and he wanted the Spider-Man face that some of the other boys got. When he got into a mirror, he was in shock! He spent about five minutes staring at himself, moving his mouth and turning his head to verify that it was, indeed, him. He also was playing very nicely with some of the other kids and with Younger Bro.

So, fast forward to today. The boys went to the clinic for Flashes of Hope, the photographing-cancer-kids-and-their-families charity. When we ran into the doctors, Dr. Graves told us that the blood screwups from the past couple weeks were due to an interesting viral infection that causes antibodies that make his blood clot at room temperature. It's uncommon, but not so much among the cancer patients. More info here, at The Wife's blog. Because of this and a few other reasons, they were never planning on admitting us this week.

Basically, Dr. Graves is working on doing a few cycles of chemo at substantially reduced doses and with a longer break. As we expected, we're looking at the end of The Boy's chemo, sooner than later; gut feel is still before the summer.

We'll have a nice weekend with Grandpa from New Jersey, then head out to Harrisburg for the two Passover seders. Then, back home for chemo #18. Rough guess says we get through chemo 20, maybe 22, and we're done.

Sunday, March 21, 2010


At Carmine's birthday party:

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Location:Lancaster Ave,Swissvale,United States

Sleep Talking

This afternoon, during his nap, Mommy and I switched places so that I could go exercise. The Boy looked up at her, said, "Tsadik sofit," and snuggled back to sleep. That's really funny. The tsadi sofit is the tsadi letter when it's used at the end of a word.

Do you think he's dreaming about letters?

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Saturday, March 20, 2010


The Boy was in short-stay last night from about 2PM until midnight, getting blood and platelets. That's kind of frustrating, because we didn't have a good idea that we'd be getting both yesterday, considering how badly our at-home counts have gotten screwed up over the past two weeks.

Let's see: LOST entirely two Mondays ago; clotted on Thursday, had to be done in person on Friday - that's when we got platelets; clotted on Monday, had to be repeated Monday afternoon (still haven't seen results from this); clotted on Thursday, had to be repeated Thursday afternoon, clotted again, necessitating yesterday's trip to the clinic. Wonderful.

Best part? The nurse in short stay refusing to give the counts to Grandma because he's "not allowed to release the counts without the doctor's permission." Idiot. We need those counts to prepare for the weekend and to prepare for the next week.

Anyway, we got blood and platelets yesterday, which means that chemo on Monday is in doubt. It's not likely that he'll rebound his platelet level up to 100,000 by then, although stranger things have happened. I'm intensely curious to get his counts, but I don't think there's any way to get them before Monday afternoon. We'll see. I'll send a few e-mails today and see what I can shake loose.

Either way, next week / weekend should be fun. The Wife, Younger Bro, and the grandparents are headed to Philadelphia on Friday for a wedding, leaving me & The Boy & Grandpa, who's coming in from Jersey on Thursday night. Should be interesting, having to do neupogen while The Wife is away. Hopefully, we'll get some help; I'm not sure I want to stick him with a needle.

Not to mention, I have a full day of work on Friday, and we don't know where The Boy will be - maybe chemo on Thursday, maybe not. We'll see. I love cancer, as it's made us much more flexible.

Thursday, March 18, 2010

Nice thoughts...

On the bus on the way home from work...

I actually sang The Boy to sleep last night. Usually, he doesn't want songs from me - just Mommy. But, I asked him if he wanted songs last night, and he replied with a faint, breathy, "Yes..." I sang the lullabies from Mary Poppins and Dumbo, using iPhone to look up lyrics.

Last evening, Younger Bro was crawling quickly to follow The Boy as TB went from room to room. The Boy was very cool about it, stopping to say, "Look, YB, ---------!", showing the baby whatever was interesting in that room.

The Boy has started trying to dance and sing along with Barney. He's also mad into Thomas. Not so much into Elmo and Sesame Street anymore.

Last night, he upended a box of juice and squeezed it onto the carpet. Interesting bit: by his actions after that, he showed that he knew he misbehaved and was sorry about it. Pretty good for a 2-year old.

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Location:Forbes Ave,Pittsburgh,United States

Wednesday, March 17, 2010

Catching Up

You can tell that it's been a healthy week for us, because I haven't updated my blog in almost a week. When it's an unhealthy time, then we spend a lot of time in the hospital. Hospital time means hurry up and wait, which allows for maximal blogging time. Non-hospital time moves a little bit faster, or at least a little bit differently.

This weekend, and this week, has been a wonderful stretch of weather. While we've had a couple of days of rain, we had nothing like the floodwaters that have hit northern New Jersey. (Thoughts and prayers go out to my friends who are now swimming from their houses.) Even through the rain, the temperatures during the day have been in the 50s and 60s, which has allowed us maximal time outdoors. We've been making due quite nicely with the Frick Park Blue Slide Playground, which The Boy really, really, really enjoys.

Saturday night, The Wife and I both had concerts. I was singing with the Steel City Harmonizers, and she was playing with her orchestra. Both shows went well. On Sunday, we just kind of recovered - spent a couple hours at the park, played with the kids, that sort of thing. Nothing besides normal life happened that day: dirty diapers and clean pants, baths, "Tackle Daddy!", some naps, and eating lots of noodles.

Monday, I had an interview to teach 8th grade math at, basically, the best middle school in the city. It's a maternity leave position, until June 15, and it's an emergency start: the teacher left for her maternity leave three weeks early due to some complications, so they were left a bit up the creek. Considering that most of the people interviewed were... involved... (if you're a teacher an unemployed in March, there's probably a reason), and considering that I am an exceptional interviewee, they hired me! It doesn't hurt that I'm experience in the classroom, and yet cheap (because my certification hasn't come through, I'm on substitute pay, which is a lot cheaper than classroom pay).

I'm not sure how I feel about the whole thing. Don't get me wrong: I'm excited for the opportunity. If there's ever a place to teach mathematics, this school is it. And, it is strikingly fortunate that I got the job: my wife, subbing last Friday at that school, happened to run into the principal when she happened to be talking with somebody nearby about the immediate need. Good timing and all that. I know that I'll work my butt off, and even if I'm not as polished as an experience math teacher, I know that I'm a better teacher than 95% of the people out there. I'll put in my hours of research, try a few things (some will fail, some won't), and do a better-than-average job filling in for the teacher.

But, I'm still nervous about the whole thing. Considering the fact that my last job had administrators that were openly hostile about The Boy's situation and the need for me during emergencies, I made sure to tell them that up front. Normal chemo, normal transfusions, normal stuff like that is not an issue. Mommy & Grandma & the crew will handle it. Emergencies? I'm there. The Boy gets a 103 degree fever at 3AM? I'm there. Period. End of story, no discussion, no negotiations. My general rationale (besides that I'm a sub and on sub's pay instead of being paid as an authentic faculty member) is that my heart and my thoughts will be enough in the hospital that I will not be remotely effective as an educator.

It's hard. I'm a prepare-for-the-worst type person, and it's hard to prepare for a full-time job and to be there for my family in the fashion to which >>I<< need. I know what they need, and I know what I need, and I'm concerned that working a full-time job will seriously impinge on my emotional needs in this case. They did in my last job (soulless administration and co-workers), and I think I'll always be paranoid about it. It has nothing to do with the teaching, and nothing to do with the children, and nothing to do with the particular administrators with whom I've met this week; it has everything to do with the constant level of fear, worry, stress, anxiety, and outright terror, under which my family has lived for nearly two years. Having lived through one family death when I was NOT there to help (my brother), and another family death when I was there to help (my mother), I know that one screwed me up long-term much more than the other. I know that I need to be there for The Boy's emergency issues; 50% for his needs, 50$ for my needs, and 50% for the needs of the rest of the family.

Tuesday, we spent one last whole family weekday: out to breakfast, two hours plus in the playground, lots of napping and tumbling around and fun and happiness. Younger Bro crawled up steps for the first time, and The Boy played with a couple of different kids. It was a nice farewell to the "break" from teaching that I just "enjoyed," and the start of a new phase of our struggle.

Sunday, March 14, 2010


Two poops in the potty in the last three days, including one today for Daddy! Hooray!

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Location:Reynolds St,Pittsburgh,United States

Friday, March 12, 2010

Nothing unusual.

Platelets finally came around 2:40. Mommy came by after school and spent time with us until we drove home at 3:45. I had a quartet rehearsal for Saturday's show, as I'm tagging in for a couple of numbers for a sick man. Then, dinner and studying for tomorrow's music Praxis exam.

Tomorrow: leave 6:45 for the exam. Done at 9:30. Home to sleep (I hope), then at my show at 2:30 for rehearsal and sound check. Still have two songs to learn. Dinner at 6:30, sing at 7:30, afterglow to follow.

Above: The Boy offering his Batman book to Younger Bro. Nice, huh?

Interview on Monday about a math job. Not sure what I think; am excited about the opportunity (great school, great kids), nervous about the prospect of not being there for The Boy (or of running into another soulless beast like Linda King or Doug Schwarz). I do enjoy teaching greatly, and having money is nice - start to rebuild money for a down payment on a post-chemotherapy house, you know?

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Location:Reynolds St,Pittsburgh,United States

Platelets Today

Getting platelets today - his platelet level was 9,000, which is about a jillion platelets off of normal. So, we're doing what hospitals love best: waiting. Waiting to get accessed, waiting for platelets to get sent up, waiting for the pre-medication.

We're watching Mary Poppins on the hospital's on demand system. Still a great flick, even on the 30-something-ith viewing. Dick Van Dyke's accent is amazing.

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Location:44th St,Pittsburgh,United States

Tuesday, March 9, 2010

Tuesday magic

The night started with a massive puke while I was getting my video game. The Boy stayed with Grandma while Mommy washed the sheets, and we slept in the boys' room for the night. I woke up to this view of Younger Bro:

After breakfast, I walked down the street to the doctor's office to get a TB test done. There's an 8th grade math class that needs a sub, so I might spend a few weeks there - get my feet wet, to see if teaching math might be something that I could actually get behind. To be a teacher, you need one of these on file. Get stuck with a needle, wait two days, and get the form signed. Walk back home, play with boys until YB goes down for a rest and The Boy falls asleep on my lap, then it's time to break in my new video game.

It's amazing. Like, Avatar-level beautiful. Fun, too! I played chapter one of twelve, which took me around 45 minutes. We played, had lunch, tried to nap again with no luck. So, I packed The Boy in the car and went to the Frick Park Blue Slide playground.

(Of course, here's where my iPhone stopped doing phone things, like receiving calls and messages. So, we were off the grid for a couple of hours until we got home and reset the machine. Argh.)

We had such a fun time! The Boy made a new friend, L! This boy was born 3 weeks after The Boy, and his little sister is only a little younger than YB. The parents are both teachers in local districts; I met Mom S. S is a cool lady and a Lost fan, which I can get behind. The boys played for around 90 minutes, and they really played together: chasing each other around, tagging each other, cheering each other on! L even said, "Mommy, I love The Boy!" it was very sweet. That's also the first time I've seen him really socialize with another kid, and I'm happy about that!

On the way home, we stopped at Dunkin Donuts. I got coffee (The Boy drank about a quarter of it), and The Boy got a munchkin, which he happily devoured. He napped for a couple of hours until dinner, then played with Grandma until I got him at 9 for stories, songs, and bedtime.

Did I mention that the lab / hospital lost the blood sample from Monday? Sigh. How frustrating. They got the other two that Mary Fran dropped off, but they lost The Boy's.

Naptime closeup:

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Location:Reynolds St,Pittsburgh,United States

My wakeup this morning

Aren't I lucky?

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Location:Reynolds St,Pittsburgh,United States

Monday, March 8, 2010

Stuffy stuffy weekend

Highlight of the weekend: Younger Bro was sitting on the floor, playing with the rings from one of the stackable ring sets, minding his own business and fully engrossed in his task. The Boy, in full impy mode, comes up, puts his hand on YB's forehead, pushes, and yells, "Tackle Younger Bro!" YB hit the ground with a loud, audible thud (The Musical Family is possessed of much harder-than-normal cranial bones), with the predictable, loud result. This was immediately followed by a reminder to The Boy that it is okay to tackle Daddy, okay to tackle Mommy, but not Grandma or the baby.

The other highlight of the weekend came at the park on Sunday afternoon, where we went despite the inches of snow on the ground. The Boy was playing on the climbing sets joyfully! By the end of the day, he was crossing the rickety bridge on his own, with no help! It took about a half-hour of "work" to encourage him to do this, but it was well worth it.

I also can't forget YB's first time in a swing. He enjoyed that very much, just as much as getting to move around the play area a little bit.

Counts were done today at 10AM, but results weren't available as of 4PM. Sigh. The rest of the day was spent in bed, as I'm stuffy as all get out - like, dizzy to stand up kind of head-cold stuffy. Lazy, lazy day, although YB spent a good chunk of it crawling around the living room. He hasn't quite discovered exactly how free he is to move around, but he will soon enough. I'm concerned, because I have the feeling that he's going to be a lot more kamikaze than his brother. We're exploring how to best utilize the baby gate thing.

Funny picture of The Boy from midafternoon today:

Heading out now to go to a midnight opening of Best Buy to get Final Fantasy 13. Wish me luck.

Edit: forgot to put up the pics before I left, but mission accomplished. The only thing I missed was The Boy's projectile vomiting from a sound sleep at midnight, precisely when I was buying the game. Sigh. Here's a picture of The Boy throwing a fit on the floor when I wouldn't let him take three bowls with which to eat one granola bar:

Saturday, March 6, 2010

Chemo 17, Aftermath

They were supposed to do a blood draw on Thursday to look at The Boy's counts. While nobody expected any changes from Monday afternoon (pre-chemo)'s counts, I asked them to do a check so that we had a baseline to compare after the next draw. The orders to draw blood got mixed up with some other orders, so that instead of a blood draw in the early afternoon, it didn't happen until immediately pre-chemo, at 5:30. This meant that, if anything needed to be done, it wouldn't happen until later. Not a big deal, we thought - how could his counts drop from excellent on Monday with only two days of chemo - long before the chemo should have an effect?

I should know better than to make those statements. I should also know better than to forget about a blood draw order; I should know to bug the nurses early and often, so that the counts actually happen. Sigh.

Long story short, we wound up staying the extra night because The Boy's red blood count dropped to 7.0 from Monday's 9.1. (Is that concerning? Yes, but we're not thinking about that right now.) By the time the type and cross was done and the blood ordered, post-chemo, it wouldn't be until 9:00 or 9:30 that the blood would start, which would mean being done at midnight. We're not going to go home at midnight, only to settle into Diaper Hell night. So, Daddy spent one more night in the Hotel CHoPitt. I was smart enough to ask them to give the pre-meds (Benedryl and Tylenol) at 10:30; The Boy napped most of the afternoon, which meant that he would up and active nice and late. Benedryl at 10:30 meant that he would actually sleep normal nighttime hours. (Well, normal hours for The Boy, not for a normal toddler.) He was in the playroom from around 7:30 to 10:00, doing his level best to play with every single thing in the room. I didn't want to interrupt that, so we waited until he was ready to slow down. Benedryl plus Tylenol, and he was out for the night.

The next morning, I ate his breakfast (he had a banana and a bite of pancakes), then Mom came to pick us up. We went to Costco with both boys later that afternoon, and we had a really nice Shabbat dinner with Grandma, Grandpa, and Aunt W. The Boy cries like heck when Mommy says the blessing over his head, but he enjoys drinking his "wine" (grape juice) from his kiddish cup.

That night, we started setting his new bedtime routine: the television went off for good at 9:00, and the three of us (Younger Bro having been in bed for a couple of hours) stayed on the bed. We played some games, had some Crazy Baby time, and then - wonder upon wonders - The Boy let us read him some stories! Daddy read the "Goofy, Move Star" and "Mickey Mouse's Picnic," and Mommy read "That's Not MY Dragon!" At that point, we were all exhausted, and we all went to bed.

Today, The Boy and I slept until 9:30! Grandpa had gotten up early and ran to the Cop Shop to get donuts, bagels, and coffee (G-d bless Dunkin Donuts for their coffee, keeps the free world running). Everyone else had eaten already, but they stayed to eat with us. After breakfast, we played upstairs in the boys' room until Younger Bro went down for a nap and The Boy went to rest with Grandma. The Wife and I went to the eye doctors for our first eye checkup in... well, a long time. Her eyesight got a bit worse, and she got new glasses. Mine is basically the same - a little weaker in the left eye, but not different enough that new glasses are needed. The eye doctor was a cool guy - he grew up in New York City and was a fan of New York baseball, so a 15-minute eye exam took a half hour due to baseball discussion.

When we got home, Mommy went to the gym. Younger Bro had been up for a long time and was ready for some alone time / nap time, after the three of us (me and the boys) did some hard playing downstairs. The Boy and I went outside to play; we drew on the sidewalk with chalk and chased the little wagon around (it holds the chalk) and played with some outside toys. Then, I shoveled some snow out of the way, and The Boy helped a bit before deciding to throw a toy down the front steps, climb down and put it back together, and repeat.

When Mommy came home, we had gotten YB down from his rest and did some playing. After Mommy and I ate (the boys had eaten a little bit earlier), we packed everyone in the car and went to the Pittsburgh Mills Mall. The boys went into the play area there and had such a great time! The Boy was climbing around and watching the other kids, occasionally talking to someone or trying something he saw the bigger kids doing. YB played a bit and made a few friends. One of the boys, Nicholas (probably around 5 or 6), took a big interest in YB, playing peek-a-boo, tickle, and similar games.

The Boy took himself out of the big kids' area and into the toddler area, which has a small slide, some play houses, and a big lady bug pillow. He went up and down the slide about 50 times, tackled Daddy on the pillow, and went into and out of the houses. After a couple of hours total at the play area, we went to Borders and poked around the books for a little while.

Funny story: I got a nice, warm, chocolate chip cookie and a cup of coffee from the snack shop. I shared some cookie with Mommy, and offered The Boy some chocolate chip cookie. He said, "Oooh - chocolate chips!", ignored the cookie, and looked inside the bag. "No," he responded to another offer of the cookie. I said, "Are you sure you're my son?" (My love of cookies is legendary around the house.) He looked up at me sweetly and said, "Coffee, please!"

We packed into the car at 8:00 and headed home. We watched some Thomas until bath time, then read the Goofy story twice, a Batman book twice, and Mommy sang some songs and told a story. Bedtime: successful twice. They're asleep upstairs while I'm blogging. I think I'm going to read my newsfeeds, shave and shower, knock off a chapter or two of the Brad Meltzer book that I picked up from Costco, and go to bed.

Now listening: the "I Am Sam" soundtrack, which is a bunch of contemporary artists covering Beatles tunes. The game is Final Fantasy XIII - I don't have it yet, but I'm trying to rewire my life to allow for an hour or two per week to play. The book is Brad Meltzer's The First Counsel. It's new to me.

Thursday, March 4, 2010

Chemo 17, Day 3

The amazing and frustrating thing about hospital time is how events blend and combine and bleed into each other (excuse the unintentional pun) into one large morass that makes it nearly impossible to remember exactly when one event occurred in relation to the others. This is what makes communicating with hospital folks so difficult. It's not that we forget what happens; we just forget to whom we told it. The following conversation happens quite a few times during hospital weeks and their immediate aftermath: "Wait... didn't I tell you that (something) happened?" "No, you didn't." "Oh. Who did I tell?" (side voice: "Me!") "Well, I MEANT to tell you."

So, what happened today? I'm not entirely sure. The Boy had a decent night's sleep, waking around 8:00 or 8:30. Breakfast consisted of half of a banana, then we watched Mary Poppins until audiology came at 10:15 to come get us. The Boy was in a much better mood this time than last time, and he actually played a few games with the audiologist before sticking his thumb in his mouth, his head on my shoulder, and shutting down. That's progress, I guess. They did the same ear pressure test that they did last time, and The Boy fell asleep in the middle of it. That caused some problems; his comfortable position is head on my left shoulder, facing out, right thumb in his mouth. This makes it easy to access the right ear, not so much for the left ear. He won't sleep on the other shoulder the same way, and he won't turn into my neck; so, we sat him on my lap to continue his nap. It worked great until he started snoring, making a big chunk of the test invalid. Sigh. Toddlers!

A student nurse came down with us to observe the proceedings. I felt a little bad for her, because she wasn't able to see a successful toddler test. She saw The Boy fuss and be uncooperative with that particular test. The funny thing? She actually thought that a mildly fussy The Boy was a "rough time" down in audiology. Heh. Let her just wait - The Boy, at his worst, is around a 3 or 3.5 on the 1-10 tantrum scale.

After audiology, we went back to the room, and he rested for a little while. We went to the playroom when he regained his energy and played for around a half hour before a poopy diaper ended the proceedings. We played with Ethan, with whom we played earlier in the week. The Boy actually played WITH him, which was nice to see. When we returned to the room, we played on the couch in the room for a while before returning to the playroom. At the playroom, one of the physical therapists with whom we've worked came to visit a little bit; not an official visit, more of a consult and discussion. That ended within a few minutes, as The Boy asked to go back to the room and rest. (Literally: "Go that way, rest with Daddy!") He slept for three hours.

Immediately before the nap, we did get to see Dr. Graves, and he expressed his delight at The Boy's GFR reading of 67. Basically, as long as his GFR stays where it is, and as long as his counts respond as well as they did with the last chemo, we're in good shape to continue the chemotherapy indefinitely. I'm not sure how I feel about that. The Wife and I have been talking, and we asked Dr. Graves about the likelihood and the dangers of stopping chemo at the end of this maintenance phase - just, going off cold turkey.

We're tired, you know? It's not physically tired; it's being tired of living with cancer on a day-to-day basis. We're tired of having this hanging over our heads, coloring our every thought, word, and deed, preventing us from planning more than a day or two in advance, and putting our careers and our lives on hold. Don't get me wrong - he's worth it, and then some. I would be quite content, in 50 years, to say that I raised two fine young men into adulthood, battling cancer for as long as is needed. But, if we could put it behind us, it'd be worth it.

As we expected, Dr. Graves reminded us that his cancer had come back already, and if it came back a third time, it would be incredibly difficult to destroy. (Sort of like cockroaches.) We knew that. He, like us, wants a permanent eradication of the cancer, not a temporized solution. And he, like us, wants a full and complete child, instead of a shell that has been demolished by chemotherapy. So, we again put our trust into the hands of another, roll up our sleeves, and head out to work.

During his nap, The Wife came to the hospital. We had a nice visit, actually getting a chance to have a conversation! That doesn't happen nearly often enough. She's interesting and funny, and I like her. Besides, she brought dinner. The two of them played upon his awakening, and we discovered that The Boy needed blood.

So, here we are, one last night in the Hotel CHofPitt while he gets blood. Theoretically, we could have gotten the blood around 9, pre-medicated, and finished it around 1 or 2AM and gone home, but that's just silly. We started the pre-medication at 10, when The Boy was winding down. Nothing like Benedryl to accelerate the bedtime process! And, I'm blogging before watching some Burn Notice and going to sleep.


A couple of points of information, in order to understand how cute this is...

A tzadik (pictured right), in the Hebrew tradition, is a good and righteous person; a person who does not sin. It's also a letter in the alef-bet, the Hebrew alphabet. (Yes, I'm aware that the letter is actually tsade, but bear with me. I'm goy.)

Tof (Pictured left), pronounced "tough", is the last letter of the alef-bet and does not, as far as I know, have an extraneous meaning.

We've gotten The Boy interested in his alef-bet by making a big deal when he picks up the tzadik or tzadik sofit (the way the tzadik looks when it ends a word). We said, "The Boy is a tzadik!" He finds that funny, and so the tzade is his favorite letter in the alef-bet.

We have an alef-bet puzzle with which he plays. It's a foam puzzle that allows him to snap the pieces out, and he likes pushing them out and saying the names. Today, he pushed out the last letter and said, "Tof!"

I said, "Tof! The Boy is tough! Is The Boy a tough boy?"

"No, The Boy is a tzadik!"


Wednesday, March 3, 2010

Chemo 17, Day 2

Today was an eventful day for everybody! Chemo on Tuesday started around 5, and I got back to the hospital around 11PM after The Wife got home from her orchestra rehearsal. (I got to watch Lost almost uninterrupted by baby, which was marvelous. What a wonderful show!) Grandma left, and The Boy and I played until he fell asleep around 11:30PM. It took me until well after woot o'clock to fall asleep; not sure why, but it probably had something to do with too much Final Fantasy 2 on my iPhone.

(Note to self: the last major insomnia problems came around the middle of Final Fantasy 12. No video games after 10PM.)

The Boy awoke at 5:30 and wanted more Mary Poppins. So, we sat up at 5:30AM, watching Mary Poppins and eating Doritos. (Hey - I was hungry, and the dining services doesn't open until 7AM!) Some of the Doritos came back up, but it was a treat and a nice male bonding moment for the two of us. Around 6:15 or so, he wanted to go to the playroom. (Key phrase: "Daddy - walk? Walk? Elmo SLIP-pers!")

What do you do when you got less than 4 hours sleep and your cancer-patient-2 1/2-year-old son wants to go to the playroom? You go to the playroom. We were there for about twenty minutes before he pooped. We went back to the room for a diaper change, and we both fell asleep until around 9:30AM. At that point, I discovered something really, really cool: the dining services has Cocoa Puffs AND Lucky Charms! The Boy showed some interest in Cocoa Puffs, mixing dry cereal with his banana and eating it that way.

Carboplatin is nasty, nasty stuff. It has an immediate negative reaction in his body. Less than 12 hours after the first dose, The Boy was listless, energyless, with no appetite and lots of body aches. This is also the stuff that causes the hearing loss and the leukemia probability later in life. Thank you, science, for giving us such a wonderful cure to cancer.

We went back to the playroom after breakfast, playing with Lydia - another 2 1/2 year old, but a girl. It's interesting to note the differences, both in gender differences and in social differences, of a child who was later diagnosed than The Boy. He is such a shy, socially awkward kid! I know he'll get over it, but my heart breaks when I think of him enduring some of the things that my wife and I endured in our schooling. The Boy and Lydia played for a little while, then he did his thing and she kicked / threw a ball around with the playroom volunteers.

We both napped after lunch again, and we webchatted with Grandpa upon waking. He talked with The Boy, and I watched the Yankees-Pirates game on tv over his shoulder: a win-win situation. I might get the subscription to go along with my iPhone app, which would let me watch any Yankees game I wanted. Not sure if I want to spend a hundred bucks, though.

The Wife relieved me while I ran to the comic book store, Starbucks, the art supply store (to get some decent watercolors for the playroom - nothing in stock today), then home. Grandpa took me to pick the car up from the service shop (nothing important - just routine, overdue maintenance), and I picked up Panera Bread on the way back to the hospital.

Of course, pulling The Boy onto the bed at the bed caused his tubes to catch on the side, ripping the needle right out of his port - in the middle of getting today's dose of carboplatin. Wonderful. Nothing like a toxic drug spill running down The Boy's skin and onto the floor. He gets cleaned up, and they try to reaccess - nothing. Not able to get the needle in, not able to establish a return. They let him heal for an hour and set up a chest x-ray, which showed that the port was fine but shifted a bit to the side. Re-access, finish the carbo, with only a minimum of extraneous stress to The Boy.

I would like to point out that The Boy stood up for his chest x-ray. That's new - previously, he's always been horizontal. Good for him! Such a brave little man.

The nurse who helped re-establish the chemo gave me a good-natured hard time, as she helped re-access him the last time his needle got yanked out. Sigh. She's a cool chick, though, and I can take a little bit of ribbing.

Grandpa came by just as we re-accessed, and he hung out with The Boy and me for a while, then everybody went home. The Boy and I watched Mary Poppins twice more, and he fell asleep next to me. I showered and got into PJs, and here I am, trying to wind myself down so that I don't have to sedate myself into sleep. Sigh.

Because of the port issue, etoposide didn't start until around 8:00 or 8:30, which means that it's likely they won't start until then tomorrow night. Then, our choice is either a 10PM discharge or stay another night - which we had planned, tentatively, to do anyway.

In short, a nice, boring, eventful day. With the exception of yanking the port out, every day should be like this!

Tuesday, March 2, 2010

Chemo 17, Day 1.5

First, congratulations to Friend of The Boy Sarah, who had another hatchling earlier this week. Her blog - Andrew Tales (The Little Dragon) - is a daily stop for us. She posted pictures of the newest baby dragon, and she is an adorable little thing!

Today is kind of day one of chemo 17, even if we haven't started chemo until late today. Last night was kind of a rough night for The Boy - because of a very late (6PM-9PM) nap he took on Monday night, he didn't get to bed until around 12:30AM or so. He woke up at 7:30, when I had the temerity to get up from bed and go to the bathroom.

I shouldn't say that. In the hospital, he's really, really good about staying asleep when I get up. It's only at home that he won't.

He woke up because of the normal hospital hustle and bustle - the nurse coming in to do vitals, the PCT coming in to do his thing, the telephone ringing, etc. So, he was awake. We also discovered, at that time, that he wasn't actually on radiology's list to do the GFR test. Dr. Graves and the on-call residents had put the orders in, but nobody had actually told radiology. Sigh. More telephone calls ensued, and - long story short - radiology came at 8:45 to discover that no peripheral line had been installed. (Meaning, no IV line in The Boy's arm / leg / whatever.)

So, we waited for the IV team, and they came and did their thing. Thanks to the extra hydration, finding a vein was a snap, although they did not have time to use the emla cream to numb the pain. Screaming boy is not fun for any of us, and - for some reason - I actually got a little nauseous watching the whole thing. Usually I don't, but I think I actually saw some of the vein when they were messing with the needle. Ugh.

Insert radioactive stuff, come back in two hours, then another half hour and another half hour. The radiologists are cool chicks who remembered The Boy from his previous GFRs, and they brought him a Mickey Mouse coloring book (with crayons) and some Spider-Man stickers and some Spongebob Stickers. I'm proud to say that The Boy pointed out Spider-Man but didn't know Spongebob. I think I've done a good job with my son in that regard. (In the picture, Spongebob is on top because he used the Spider-Man stickers first.)

In between the 2nd and 3rd blood draw, we were given clearance to go to the playroom. We didn't know if we could because of the potential for a C-Diff recurrence (nothing back on any cultures, but not looking like it's happening despite some diarrhea earlier this week) and because of his cold. The doctors said that the cough and congestion was from the throat up, so the mayor of the playroom went to work.

We also had a speech consult, which went well. She said that The Boy had an exceptional vocabulary and quite clear speech for a child his age, with good grasp of the consonant sounds appropriate for a 2.5 year old. He was quite charming to her, which I appreciated. She recommended that he go in for follow-up evaluations every 6 months or so, so that an expert can listen to him and make sure that there are no slow-moving changes that slip past those of us that see him day-to-day.

Next up: a nutritional consult, to make sure that the probiotic pills that we have (to combat diarrhea and other bacteria losses due to chemotherapy and antibiotics) are appropriate for The Boy; physical therapy consult, to hopefully get The Boy playing and running around while he's in the hospital; and a consult with a social worker, to find a good family therapist for us. We've been in crisis mode for so long, and looks like we might be through the worst; it might just be time for us to start to re-learn how to interact with each other in a normal, extraordinary-stress-free manner.

And, of course, discussing the results of the GFR with nephrology and with our oncology team. The Wife and I think we've come to some conclusions about the direction we want The Boy's treatment to go; we'll wait before we discuss it in a public forum.

Last thing: HUGE thanks to Grandma, for giving me 10 hours at home today. I exercised, got some amazing Younger Bro time, and even got to have dinner with my wife! Plus, I got to put Younger Bro to bed, which is really, really nice. I'm at home right now, but I'm heading back to the hospital as soon as The Wife gets home from orchestra practice.

Location:S Dallas Ave,Pittsburgh,United States

Monday, March 1, 2010


Daddy! What are you doing?

Daddy's going potty, The Boy.

Oh! Okay. Daddy's going potty?

Yes, The Boy. Just like Elmo says, when you get that feeling, drop what you're doing and go.

Oh! Okay. Daddy, what are you doing?

Daddy's using the potty. (flush)

(The Boy claps enthusiastically.) Hooray! Daddy used the potty! Yay!

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Location:Fisk St,Pittsburgh,United States

Holding Steady

99.5, and he's running around like normal. Sick? Probably, but not worrisomely. (Is that a word?)

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99.4 and climbing. Been up since 4:30. Might not be doing chemo today, but gonna be in the hospital, one way or the other.

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