Tuesday, September 30, 2008

Chemo, Week 12

The van came to pick us up at about 9:15 this morning for our appointment at the Valerie Fund Center. The Wife went to services this morning while we went to the hospital. My father and niece met The Boy and I at the center; they arrived about 15 minutes before we did. We arrived at the Center at 9:45-ish.

They took The Boy's vitals (temperature, blood pressure, weight - 23 pounds, 15 ounces) and hooked up to an IV fluid and Zofran, which is The Boy's anti-nausea medication. They took some blood to get his counts as they accessed his port to get the IV started.

It's kind of interesting, actually. When I take The Boy into the examination room, he starts to panic a little bit. He knows what usually happens there. The playroom is fun, and he has no problem whatsoever when he's in there. (As a matter of fact, it was quite amusing. He was a one-man wrecking crew in there; no toy was un-played with by the end of the day. And, the cute wooden toy train playset was completely demolished as in a Godzilla-attacking-Tokyo manner.) But, when we enter the exam room, he gets clingy and grumpy. When the nurse comes in, he starts to panic, and when he gets laid down on the exam bed, he freaks out entirely.

This, I'm not happy about. He starts screaming, crying, drooling and snotting. It's really quite difficult for all of us; the natural human response to a crying baby is to pick him up and soothe him. The response in that situation is to hold him down and stick a needle inside his body. This is not fun. We access the port with the needle, the nurse sticks in saline solution and works it in and out of the body (until a solid blood flow is created), takes two things of blood and attaches an IV tube. The tube gets taped to his body at the source and pinned to the inside of his shirt.

We went back inside and played for a while as we waited for the blood counts to come back. This took about an hour or so. As it turned out, his blood counts were still quite low. His hemoglobin and platelets were fine, more or less. His white counts were lower than they wanted, but the doctor decided to go along with the chemo. The "big" drug (the dactinomycin) does not suppress the white cells at all, and the chemo winds up being once every three weeks from this point forward. So, once the drugs arrived from the pharmacy (they don't order the drugs from the pharmacy until the counts come back, because the drugs are so potent and dangerous), they gave it to him.

The shuttle was an hours' wait from that point, which was annoying. But, he played for a while and snuggled for a while. The chemo drugs start to slow him down almost immediately, so he did a lot of slow moving stuff during that time. When the shuttle came, we loaded up and went home, and he slept for a few hours once we got home.

It's a long, hard day, to be honest. It's difficult to be there for him the whole time and to be strong for him. I wish that I could get through this without the amount of stress that I'm having.

Eh.

Diaper Hell tonight. We're on "even plus 30" - next change at 12:30.

Monday, September 29, 2008

Cuteness personified...

Yesterday afternoon was a good day, for sure.

The zoo outing that the Valerie Fund Center had planned got rained out, so The Boy and I got some extra time at home in the afternoon with The Boy. We got home (The Wife went to the supermarket) around 12:40 and played around on the bed for a little while. It was really cute: he'd "tackle" me, then I'd "tackle" him, then he'd "tackle" me, and so on. All rounds of tackling would end with tickling and raspberries and giggling and laughing. It was immensely cute and fun for both of us. When Mommy came home, she joined us for a while before we went outside to the living room to watch the football game and eat lunch.

The coolest thing that he's done recently is put the plastic shapes through the appropriately designed holes in the toy. He does it three or four times in a row, then he'll lose interest and start throwing things. That's also fun, incidentally. The Boy and The Wife took a bit of a nap together after lunch, while I was doing... I don't remember what I was doing, but I was working on something.

After he woke up, he was - again - really cute and engaging. He was playing with us, handing things back and forth and imitating us and trying to use the toys in a different way that just banging, throwing and chewing. His span of attention is appropriately short, but it's pretty good for a kid of his age.

I'm looking forward to getting to spend some good time with him over the holidays in the next two days. The chemo is going to suck tomorrow - big one, with two bad chemicals - but my father & niece are planning on coming by to spend time with us. The Wife is planning on going to services on Tuesday morning. The Boy'll probably go with her on Tuesday night. I'll stay home and play God of War II - I'm almost done.

Ugh. My brain is moving slowly today. The kids are out of their minds - day before a vacation day is usually pretty brutal when it comes to concentration, and this is no exception. Well, one more class to teach, 5 or 6 jazz band auditions to listen to, and we're done.

Sunday, September 28, 2008

Turning the corner...

For the first time in weeks, I woke up this morning without a sore throat. My "vocal rest" teaching day on Friday, and my "taking it easy" approach at marching band on Saturday really paid huge dividends. I'm not back to 100% yet - far from it - but I can finally see the light at the end of the tunnel.

What they don't necessarily tell new teachers is the fact that teaching is very, very hard on the voice. You need to project a loud, clear, interestingly varied vocal tone to the back corners of the classrooms, in order that students hear and understand what you're saying. The additional factor of musical instruments merely makes it more challenging to be heard.

I've been pretty well vocally trained, and I usually don't have issues with my voice. But, when you're out of teaching for a year, and when you stopped singing for a couple of months because of a summer spent caring for a sick child, it can take a long time to rebuild those muscles to work all day AND to sing all night. It's been pretty horrible dealing with it.

While I can feel myself working back to normal (my voice is still feeling the effects of the cold from which I'm recovering, but it's only a temporary weakness), I need to remember to take it easy for a couple of more days. Thankfully, this week is well set-up for it. Church today was mostly low-voiced music, and I have Tuesday and Wednesday off from school thanks to the Jewish holiday of Rosh Hoshanah. This means that, assuming I can get through Monday without having to raise my voice above a soft speaking level, I should be in pretty good shape for Thursday's long day of auditions, school, marching band and church choir practice.

Of course, if there were less on my plate, and I was - say - sleeping more and had less stress on my life, then things might be a little bit different... but, let's not go nuts.

Saturday, September 27, 2008

rainy night in Georgia

We woke this morning to find a baby separated from his diaper and a wet bed. Sigh. It might have been better had it not been 6:30 am, but that's a half hour later than normal, so I can't complain much. Still, it's quite annoying to awake in dampness. It's been a long time since I wet the bed!!!

This isn't the first time he's taken his diaper off, but it is the first time in our bed.

The house is an absolute atrocity today. Three baskets of laundry from last Sunday, a toy explosion in the living and dining room and dishes piled high in the sink make for a gross house. We'll clean it today, I'm sure. It's been a tough week. To top it all off, The Wife and I are both getting colds. Makes my voice that much healthier, you know? At least we got the dry cleaning from two weeks ago inside.

I'm trapped for a while. There's a baby draped across my midsection who seems quite comfy. Who am I to move him?

Friday, September 26, 2008

He's just a big guy...

One of the duties in which I've been remiss has been outlining a couple of the cool things that The Boy has been doing lately. As with many, I can get so wrapped up in the cancer thing that I forget all of the other cool, joyous things that occur on a daily basis.

The Boy has figured out that you can put stuff inside other stuff. For instance, he's discovered the hollow arm of the easy chair, which is where we keep the remote controls. Recently, he's started pulling the remote controls out of the hollow arm and putting his toys - usually little plastic shapes from one of his stacky-things - in the arm. He will then take the remote controls and put them inside his little wagon-thing.

He's also discovered that it is possible to put things on top of tables. He took a couple of remotes today and put them on the lip of the TV stand - I wonder if that means that he understands that, usually, those remotes control something on the television? More than likely, it was just an excuse for him to get within reaching distance of the television set.

He's also tall enough to pull the bathroom drawers out and look inside them. He can't quite reach the stuff inside, but he's close.

He's also figured out the whole button-pushing thing. He's got a Sesame Street thing, which has buttons that, when pushed, release the characters with a cute song. He's mastered the Cookie Monster part and gets the Elmo part regularly. He hasn't quite figured out the Oscar the Grouch part, because he doesn't have the twisting thing down correctly. Ms. R tells us that he's figured out all of the "Pop-Up Pals" buttons on the toy at her house. Plus, on his "laptop," he actually will push a few buttons before he pulls the thing closed. He understands that they do stuff and make noises!

Today had the potential to be a horrendous day for me. I lost my voice late last night at choir rehearsal, and I had a full teaching day and marching rehearsal today, before a football game tomorrow & big choir day on Sunday. I've also been feeling a little under the weather for the past week - stress, lack of sleep, funky eating habits and being around the germ factories masquerading as children have finally caught up to me. Early in the morning, The Boy had a HUGE poo - like, right up to the edge of the diapers-sized, "I'm a pound lighter" sized poop. I dropped him off at the babysitter's house, and - just as I was pulling into the school's parking lot - I noticed a big poo stain on the sleeve of my shirt.

You know what? Once you've been pooped on, the problems of the day don't seem so bad.

I washed my sleeve off the best I could, and had a great day teaching with a "vocal rest" plan that I shared with the kids. Every class was productive, and marching band went well (disclaimer: I did go home early to help with The Boy). I should start the day getting pooped on more often...

An even funnier story...

So, The Boy's diaper rash was just not getting any better. (That's not the funny part.) The Wife took The Boy to the Valerie Fund Center yesterday, to get the blood counts in the vain hope that he'd be getting chemo. Since his counts were, basically, non-existant on Monday, there wasn't a realistic chance in you-know-where that he'd be getting chemo. We asked the doctors and nurses about why his rash didn't seem to be improving much, and they started to hunt down a solution.

Making a long story short, it turns out that Ms. R, the babysitter, had been using the emla cream as diaper cream. The emla cream, if you didn't know, is the stuff we put on the port to numb the skin to make the port access needle painless. So, in essence, Ms. R was numbing the baby's whole diaper area each diaper change instead of using the antifungal cream.

Numb nuts, indeed.

Thursday, September 25, 2008

Funny school story...

So, I drop The Boy off at Ms. R's this morning. It's a short day for the babysitter, because The Wife is picking him up at 11:30 for his visit to the Valerie Fund Center. Okay. Drop the diaper bag off, drop off his snack bag, drop off the baby, head to work. Telephone rings twenty minutes later. "Do you know where the diapers are?" Whoops. Turns out, when my wife said this morning, "The diapers are done in the dryer!", she really meant, "Pack some diapers from the dryer into the diaper bag." Whoops. Run from school to home, pack the diapers with the liners, run to the babysitters (st00pid elementary school drop-off traffic... I hate it so much...) (that's a Simpsons quote, not an indication that I hate elementary schools or their students), run back to school. Argh.

Standing in the hallway today, four band / orchestra kids come walking down the hallway together, Reservoir Dogs-style. The one on the left is, like, 6'3". The one next to him is 5'10", the next one is 5'4", the last one is about 4'10". (That's the great thing about middle school. You have the kid who's ready for the high school basketball team in the same grade as the kid whose feet don't touch the ground when they sit in a chair.) Orchestra Dude, my colleague, says, "Wow - you guys look like a bar graph!"

Heh. The fact that it was unintentional was the funniest part. They were amused as well.

Wednesday, September 24, 2008

News Update

My baby snores.

It's cute.

Time after time...

I just found myself saying "Good morning!" to people with the honest impression that it was morning and not 3PM & the end of the school day. Ugh.

So, when I was a freshman in college, there were these really cool, party-type trumpet players who were seniors or fifth-year seniors. I hung out with them a bit, when I wasn't hanging with my homeys from The Quad. One day, after dinner (around 7PM), I was hanging out with them and listening to some Mahler symphonies, when one of them woke up and came out of the bedroom of the apartment. He looked like absolute dreck - bed head to the extreme, bloodshot eyes, etc. He cracked open a beer (he was 21) and sat down in front of the TV. "Man, I've got a lit paper due in a couple of hours. Stupid 2nd period classes."

His roommate threw a couch pillow at him from across the room. "You idiot. It's 7PM. You overslept by about twelve hours."

The guy said, "Really?", looked at his watch, put his beer down and went back to bed.

Ahhh... the good life. When it was possible to oversleep, and when the only things to worry about were lit papers and practicing the horn.

Chemo this week...

On the one hand, having The Boy's numbers too low to get chemo means that we won't have to go through Diaper Hell this week. On the other hand, not getting chemo this week means that next week - which was supposed to be a testing-only week - I'm going to have to take a half-day from school on Thursday to get him chemo. Gripping hand, I'd rather him stick to his schedule because I want the surgery and the accompanying tests to happen sooner rather than later.

Extra bonus points if you can identify the "gripping hand" reference. Hint: obscure science fiction novels.

The Boy's got a strip of diaper rash up his bum that is - seriously - tomato-red. It must hurt and itch like a fiend. I get that "not-so-fresh" feeling just by looking at it. Not surprising - yesterday, he had, like, six little tiny poops. Since he has no immune system to speak of, it is not shocking that that bacteria took quick root and went to town on his skin. Poor, sensitive little dude. He yelled at me - rightly so - when I changed his diaper (twice) this morning because I wasn't gentle enough with the rash area. Sigh.

Thinking ahead, I'm sure he's going to love that I'm blogging about his butt. But, that's life. I've spent a lot more time looking at The Boy's junk (meaning, diaper area) than I've spent look at my own. Eh. Whatever.

Rain all weekend might mean an easier marching band schedule for me. I could use it. Stress is a killer.

Tuesday, September 23, 2008

sleepytime down south

when I got home tonight, The Boy was stretched across the bed horizontally. Little stinker. Looks like I've been displaced for the night.

The fever seems to have abated. Wouldn't you know, he woke this morning with a normal temperature. He didn't take any fluids outside of nursing, but he did eat a lot of watermelon. We'regoing to try sending him with my water bottle tomorrow. It's got a bite-and-suck thobgthat he enjoys doing , even if he doesn't quite understand the concept of "straw" yet.

Scary couple of days. Not looking forward to the next time.

Monday, September 22, 2008

Frustration

I did drive to the hospital today and spent some time in the Valerie Fund Center with my wife and The Boy. Turns out, if you read the comments to the last blog section, that the counts were horrendous - no white blood cells to speak of, except for immature ones that aren't doing a great job keeping him healthy. We've spent the rest of the day and night entertaining The Boy and taking his temperature every 20 minutes or so. It was at 99.3 for several hours; the minimum needed for them to suggest admitting him to the hospital is 99.4.

So the question arises: is the fever the endgame of The Boy fighting off a cold, or is the continued fever (48 hours and running) showing us that he can't fight off an infection? They did pump him full of antibiotics while they were wrestling with the port clogging issue. At the end of the night, before he fell asleep, his temperature seemed to be dropping - it was down to 98.7 or 98.9, depending on which result you trust.

Thankfully, he doesn't go to a daycare center, or he wouldn't be going in for a few days. Instead, we'll see what happens tomorrow morning. Now, who keeps him home or takes him to the hospital? The Wife took chemo two weeks ago and is supposed to take him to chemo this week. I took him to the center in the crisis two Fridays ago, to the doctor's on Tuesday and to the MRI on Thursday. She took today to take him to the hospital. Man, this sucks: there's no good answer to that. I hate missing this much school. Maybe she takes him tomorrow, and I do chemo on Thursday - particularly considering that there isn't much of a chance that he'll actually receive chemo on Thursday.

This is what's frustrating. Every day is completely unpredictable. Every thing he does, every thing he feels, is a question mark. It's really quite agonizing and stressful for us - and that makes it worse, because I feel guilty about getting upset and depressed about it and not paying my attention to The Boy. It's overwhelming.

My wife has really taken today's events hard. She expected that today would be a quick in-and-out: show up at the center, take some blood, run the counts, and send us home with a set of care instructions. Instead, they were at the hospital from 9 until 4 and sent home with nothing remotely conclusive to ponder. There's nothing we can do to plan for tomorrow, or Wednesday, or Thursday. For someone like me, who is an inveterate planner, that's torture, pure and simple.

Plus, I haven't done any work for my choruses, or for school, or around the house. Wonderful.

Putting mileage on the car...

As I speak, The Wife and The Boy are at the hospital right now. His temperature stayed high all night and was over 99 this morning (remember, add one because it's taken under the arm), so The Wife took the day off of work and took him to the hospital. Last week was my week, this week is her's... unless we need to take him back tomorrow, in which case it'll be my day, because she's taking him for chemo on Thursday.

Basically, what I understand is that his hemoglobin levels are still low, and his white blood cell count is 6800 - which I don't understand. I don't know if that's good or bad - I'm sure The Wife will clarify that in comments. They gave him antibiotics through his port, but they discovered that the port is clogged - so, while they have him hooked to an IV for fluids, they have some medication working its way inside the port to clear the clog.

Makes sense, if you think about it. Here's this plastic thing inside his body, going right into blood vessels. Our bodies want to seal that stuff off and resume normal function; heparin is the drug that they give through the port to prevent that from happening. But, it is not uncommon for things to get clogged.

Anyway, I'm still at work, so - if you know how high-strung I am - you know that it's serious but not THAT serious. They're going to be there for a couple more hours, which means that I might join them after work. Or, I might go home. It depends. Text messages seem to get through occasionally, so I should find out if she wants me at the hospital or not.

It's also a measure about how serious I think this is, if I'm contemplating going home and getting housework done instead of going to the hospital to join them. If she's got it under stress-free control, then I might go home, mow the lawn, prune the rosebushes, put away the laundry and vaccum the upstairs without having to dodge baby.

Does that make me a bad person? I don't think so. I'm just concerned that, if the grass gets much longer, we'll be dodging lions and gazelles living in the high grass.

Sunday, September 21, 2008

'Round Midnight

The Wife took The Boy in to the living room at around 6:30 this morning to let me catch another hour (my fourth) of sleep, thank G-d. I'm really thrilled that she did that, because I was beyond exhausted. And, here I am, at 10:33PM, watching the last game at Yankee Stadium instead of being intelligently asleep preparing for tomorrow's school day. Sigh. I'll never learn.

On my way home from church today, the telephone rang. It was my wife: "We have a problem." Oh, s&&t. "The Boy's temperature is over 100." I added 5 MPH to the car, and she called the hospital to get a message on the service of the on-call doctor. Making a potentially stressful story short, his temperature fluctuated between 99.6 and 98.6 when taken under the arm. This way of taking the temperature is accurate, roughly, when you add a degree. The doctor said that we could go to the emergency room if we wanted, but if he was playing normally (he was), we could wait and bring him to the center in the morning. Since his white counts and platelets were relatively normal (1000 is normal for white blood cells, and his was barely over that - but, it was over that), we've elected to wait. His hemoglobin is low, but that shouldn't cause this particular problem. My wife will take him in the morning.

The Boy and I went for our walk to the comic book store after we spoke with the doctor. I figured that a little bit of sunlight would do us both good. We rested when we got home, even though he didn't sleep until my wife got home from the supermarket. At around 3:15, we left for the church, where my buddies from the barbershop / a capella quartet 'Round Midnight were singing.

It was a great show, and The Boy loved it. When they started singing, he stopped crawling and just sat on the floor (in the aisle of the sanctuary) and watched them sing. Several other times, when he was cruising up and down the pew, he would stand and peek around the end of the pew to watch them sing something that impressed him or that he recognized.

He really behaved well. He played with his toys, he cruised around, and he entertained my father and me. He also was a big star with the people at church, who are praying for him daily. (Hi, Judith!!! Your chocolate cake is truly a work of G-d.) The only time he made noise that carried was when he grabbed a song book in each hand, in the pew book holder, and shook them violently back and forth. That also startled my father, sitting right in front of that particular action.

It's funny when old people jump like that. Not so funny when it causes a myocardial infarction but still pretty funny.

After the show, we went downstairs for a reception, where The Boy proceeded to wipe chocolate all over the khakis I was wearing. He loved the meatballs (his current favorite food), tolerated the chicken, enjoyed some chips and LOVED the chocolate cake.

When we got home, his temperature spiked again. He's in bed now with my wife and still cute.

In short, it was an interesting weekend. It again raising the question of symptoms that are normal childhood colds, normal childhood complications (teething complications, etc) and chemotherapy side effects. Is the temperature a result of teething, or a growth spurt? Is it the remnants of the cold he fought last week? Or, is it an infection that settled in because his counts have fluctuated over the last week? What about the vomiting yesterday, in the car at the competition? Was it normal childhood "random vomiting"? Was it something he ate that disagreed with him? Or was it a result of the chemo? There's no realistic way to tell at this point, which is frustrating as heck for us.

Ugh. I'm reminded of my father's words: "[Children] don't come with an instruction manual." That's the truth. There's no manual for dealing with pediatric cancer - just general guidelines.

Yankee Stadium has its final baseball game tonight. This is another situation where, while I'm sad to see The Stadium go, I'm happy that a bright new one is opening up. I believe that Yankee Stadium is one of my two or three most favorite places in the entire world, and I hope that my son has similar experiences with the replacement ballpark.

Saturday, September 20, 2008

Interesting Week...

So, The Boy went in for his MRI on Thursday. This test was to provide more information for Dr. Doolan at the Children's Hospital of Philadelphia; supposedly, it will show him that the second tumor is benign. We haven't heard the results yet, but we expect them on Monday. Aunt M came in from Harrisburg to help out.

We arrived at the hospital at 8:20 for an 8:30 appointment at the Valerie Fund Center. This was Week 11 of his chemotherapy, which is a week that has no medication. The Boy didn't need his port accessed, just a finger stick to get some blood for counts. We hung out at the Valerie Fund Center while we waited for attention, and they told us that they wouldn't stick him at the center. Instead, they told us to take him down to the MRI and they would take the blood while he was sedated.

After a few little mishaps getting The Boy checked in, we found a nice spot to wait. Aunt M took The Boy walking down the hallway to the preparation / wakeup room. Eventually (only about 30 minutes later), they took us in to the preparation room. We walked through a major labyrinth to the MRI room, and I laid The Boy down on a stretcher. The Boy screamed at us for doing this, and the doctor put a mask over his face. Within about thirty seconds, he was asleep and we were hustled to the MRI waiting room.

He was in the machine for about a half hour or so, give or take. We waited in a tiny little cubby off the main hallway, and I read a couple of music dork magazines. The big cage / crib passed by, which we figured (correctly) meant that he was done with the MRI. He was absolutely zonked out. That makes sense, because an MRI requires the patient to be absolutely still (which a baby can't do, of course). They took us to the recovery room, where a nurse waited with us for The Boy to wake up. It took about twenty minutes, more or less. As soon as I told Aunt M that I was headed to the bathroom and took two steps, he screamed and, well, that was that.

Side note: as a teacher, we learn to train our bladders. For instance, I have classes four straight periods, from 9:46 to 12:40. That means, if I have to use the facilities at 11:00, then I'm pretty well out of luck. So, after a while, we learn to pee at certain times and to hold it for an hour or so when necessary.

But, I digress.

He was pretty well drunk when he woke up. Like, he sat up, wobbled and fell down again. It actually was pretty funny, in retrospect, but a bit scary at the time. When I picked him up, I had to hold him like a newborn - one hand on his head, arms fully around him. This was one of the times when I was really grateful that Aunt M was there, because she helped out a lot all day, particularly while we were waiting for The Boy to wake up and to recover. We took him to the recovery room; the cool thing about that was that I sat in a wheelchair and held The Boy while they took us to the step-down recovery room.

That was pretty impressive, actually; I weigh about 220 pounds after lunch, and The Boy weighs 20-something pounds. Our nurse could not have weighed more than 120 pounds in a wet wool sweater. The fact that she was able to push me was remarkable!

The step-down recovery room was a four by four niche with no furniture in it. I sat in the wheelchair until it became a hazard; The Boy was trying to sit and crawl and stand - while stoned from the sedation - with metal doohickeys sticking from the wheelchair. The nurses brought us some packages of poundcake, which The Boy ate with relish. (Not with the condiment relish; I mean that he really enjoyed the sugared treat.)

I wasn't too thrilled with the "step-down" recovery room.

The interesting part was when they came to take the IV tube out of The Boy's hand. He was eating his poundcake at the time. He watched them take his hand, take the tape off, pull out the IV needle and put gauze on the wound. He didn't make a peep, just watched the nurse work and munched on the poundcake. What a kid. I would have been crying like a little girl.

We brought him home at that point, and he fell asleep quickly. He slept a lot of the remainder of the day and quite a bit on Friday and today. The sedation with do that to you, particularly to a kid who has hemoglobin levels as low as The Boy's levels. He's been relatively easy to care for, except for a vomiting spell today just as The Wife arrived in Piscataway to watch my band march.

I'm hoping to take The Boy to see 'Round Midnight at a performance at my church tomorrow afternoon. The Wife is teaching at that point, so she won't be joining us. This week is a big chemo week on Thursday, with The Boy getting the doxorubicin - one of the Big Bad medications. But, this week was hard - Friday night football game, competition today, concert tomorrow means no rest at all. This week will be a bit easier: easy rehearsal Tuesday afternoon, Dapper Dans Tuesday night, no marching band for me on Thursday. I have a lesson to teach Monday, with some nice kids. I'm nervous about teaching it, because I'm tired and grumpy, but it's a neat family.

Wednesday, September 17, 2008

Random thoughts

I can see it in The Boy's carriage: "I'm so little, but I take up the WHOLE bed!!!" It's amazing that he can push around adults who outweigh him by around 200 pounds (in my case).

Tonight we had macaroni and cheese, which was the first time The Boy had had it. He loved it, as any good American boy would. (Only dirty commies don't like mac and cheese, or pizza. It's just the way it is.)

There was "Are you smarter than a 7th grader?" at school today. I bombed, like, big time. I didn't know the number of regions of France (22, apparently), didn't know where the next Olympic games are being held and something else. Forget which. I'm dumb, apprently.

Have you noticed that, anytime a tv show says, "viewer discretion is advised," that that show is likely interesting?

I was tackled by The Boy several times while we were wrasslin' earlier. It's funny: he starts growling at me (like, a literal puppy's growl) and tackles me, chewing on my shoulder until I fall down. He also spent time chewing on my nose, and - when I stuck my tongue out at him - he tried to bite my tongue. Weird.

It was definitely a fun night.

The Light at the End of the Tunnel...

...is a reflection off of our heads. The Boy is starting to lose his hair, and that's really making me sad. Since it's so late in the chemo process (week 11, officially, is tomorrow - and is, thank G-d, just blood work and no chemicals), we were hoping that he would avoid the whole hair loss thing. No such luck. As we were enjoying a family snuggle yesterday afternoon, my wife was running her fingers through his baby hair and emerged with a handful. This was repeated a couple of times subsequently.

In a weird sort of way, I was looking forward to this. It struck a cognitive dissonance that a child that has such health issues always LOOKED so healthy. I've expected him to look as sick as he is, as sick as the chemo is making him. Now that the hair loss is here, I'm very, very sad about it. But, at least we won't feel guilty that our kid looks so perfect while the other cancer kids look sick.

Does that count as a nuerosis, to feel guilty about The Boy looking healthy when he isn't? We saw a kid - obviously in chemo - at the mall last week, and we would have loved to chat with the parents a little bit. But, we didn't, because The Boy looked so healthy, happy and radiant that we didn't feel like explaining that "it's the GOOD type of tumor.

But, I digress.

I'm looking forward to the MRI tomorrow, because 1) big, noisy machines are cool, and 2) it'll be nice to spend some time with The Wife's aunt, who is an immensely cool chick, and 3) it'll be nice to have the doctor tell us some (hopefully) good news about the remaining tumor. I don't expect prompt results, so I'm certain that I'm going to be irritatable for the weekend, waiting and waiting. Life's difficult.

Good news from this morning: he ate a BIG breakfast. His entire poached egg, a quarter of a slice of bread and a lot of juice. This was more breakfast than he's eaten over the past week! I also think we're getting into a little habit of having five or ten minutes of snuggle time before we leave in the morning - like, 7:15 to 7:25 or so. I like that very much.

Monday, September 15, 2008

Help.... wanted...?

My wife and I have received some very nice telephone calls and conversations lately, all with people asking how to help. And, man, we're having the damndest time answering it.

We definitely need help right now: we're both feeling very overwhelmed at the current time. It's difficult taking care of a normal, active 1-year old with two working parents and no grandparents living particularly nearby. (That's not an indictment of our parents, who have gone well above and beyond the call of duty since The Boy was diagnosed with his Wilms Tumor back at the end of June.) Because of marching band (see yesterday's post) and my side jobs, I'm out of the house a lot during the week, leaving my wife to cope with The Boy by herself.

It's not like he's particularly demanding. He likes some cuddles, but he likes his naps. He needs constant supervision while he plays, though; even though he hasn't quite learned how to play with somebody yet, he likes playing nearby others. Plus, no matter how much you babyproof, there's still going to be stuff that he should avoid (which means that that stuff is like crack to him). But, still, it's difficult or impossible to find time to 1) relax and unwind from the demanding workday of a middle school teacher and to 2) take care of the house in an appropriate way and to 3) take care of decent exercise habits.

So, what do we ask for? We don't need money right now. We got our first two hospital bills - one for about $500 for his stay in the hospital for the first surgery, which is actually pretty reasonable. I want to ask for an itemized bill (to make sure that I'm paying for what we should be paying for), but that's not out of the question. The second bill is just stupid. Our insurance company says that $3000 of services in July and August aren't eligible because 1) they had no referral from our pediatrician (false), 2) The Boy had secondary insurance from his father (false - my new insurance didn't kick in until September 1), 3) the medications are not necessary for treatment (uhh... false) and similar reasons. That won't stand up to a review, so I'm going to see if the Valerie Find Center can take care of it before I start writing letters. (Of course, there's no telephone number on the letter.) Plus, our relatives and friends have been very, very generous to us. Long story short, money is okay at the current time.

Food is kind of a funny thing, mostly because we keep a kosher house. People can't just bake a casserole and drop it off, because we can't cook it in the house and we can't keep it in the refrigerator. We need to be careful of Kosher meals for a different reason: our freezer is full of the stuff we normally eat (frozen waffles for my breakfast, some tv dinners that have been there for a couple of months and frozen veggies and meat0 and isn't big anyway, and our refrigerator is usually pretty full with our normal foodstuffs. Since we're big on the whole organic / Kosher thing, we usually have lots of veggies and fruits and meats and stuff in the fridge. Plus, The Wife enjoys cooking and can cook, even while caring for the baby.

Really, the hook & crook of the help is with some of the housework - help getting the house cleaned (bathroom and kitchen especially) and vaccuumed. That's not really something that you can ask for, though; it's difficult to imagine asking people to show up at your door wearing cleaning gloves and carrying a bucket. "We're here to clean your toilets!"

Uhhh... yeah. What? No. Okay.

Don't get me wrong - at this point we wouldn't turn down the help. It's just that we have a really difficult time imagining ourselves asking that of friends and family. Lawn care, maybe? That's different than asked someone to run a Lysol wipe on the rim of the toilet bowl.

Laundry and ironing pose similar problems. I think that we're going to take our ironables to the cleaners for the next two months while it's difficult for me to iron because of scheduling. We might look into dropping our laundry off at a local laundromat for washing, as the washing and folding parts do take up plenty of time. But, even so, that's not a lot of time and not challenging to do with the baby. Cleaning the bathroom and kitchen is much more difficult with The Boy around. Even vaccuuming isn't that bad, once you get over The Boy's quest to take out every toy that you put away, as quickly as you put them away.

I don't know. What do we ask for? We're simple people. Other than my propensity for gadgets and gizmos, we don't do anything. We don't go anywhere. We don't eat exotic foods (other than Indian, every once in a while). We don't go to concerts. We're just boring people, intentionally so. I don't want to ask people to watch The Boy, because I don't get to see him enough as it is. It's not a break to have others watching him, because I want to spend time with him and with my wife, together.

I dunno. We had a 25 minute conversation with a local lady who runs a group that helps families with sick kids and still weren't able to come up with an idea of a list of things. We're so much luckier than other parents: she told us the story of a local family whose kid had a brain tumor at age 3 that was the size of a baseball or something. The community wound up creating an organization that paid this family's mortgage, because one parent had to quit their job to spend their days at the hospital for, like, a year or so. That's not us, thank G-d. The Boy isn't THAT sick, thank G-d. Neither one of us has to leave our jobs or take leave from our jobs, and our insurance plan is really quite good! That's one of the reasons why we haven't gone to any support groups yet (other than the whole lack-of-time thing) - we don't want to sit in on meetings and have to say, "We're lucky because our lives have not been entirely destroyed by our child's illness - we've had to miss some work and change some vacation plans, but that's about it. Oh, yeah. We lose sleep every week after chemo. That's pretty bad, right?" Granted, the stress is a freaking killer, and not knowing what the fudge is going on is really, really challenging also. But, we're very, very lucky and hyper-aware of it.

The only thing that I can think of as "help" from people really winds up being company for The Wife and The Boy during the days and nights that I'm not around - for instance, this weekend, I've got a football game Friday night (home at 11 or so) and a competition on Saturday (currently slated to leave home at noon and arrive home around midnight). Maybe that would help, but I also don't want to spring people on my wife that she isn't really friends with. Maybe if people donated a week of their cleaning service - we've spoken about hiring a maid to come in every other week during the marching season, but I've never gotten around to finding one. Easier said than done, I suppose.

Eh. I don't know if it'd be that different if The Boy wasn't sick. I still wouldn't be around, and my wife will still be left holding the baby while she vaccuums. (Ha - everyone knows that Jewish women are allergic to vaccuum cleaners. It says so in the Talmud.) Some days, I almost wish that things were "worse," because then it'd be easier and simpler to ask for help.

To end on a funny note: last night, I was working on the computer as I was bringing stuff from the upstairs to the downstairs. As I started up the stairs with a basket of laundry, several things whizzed past my ears. The Boy was throwing toys in between the bars upstairs, and he had inadvertently bombed me with his toys. This was quite funny to him, mostly because he enjoys testing the theory of gravity on a regular basis.

Sunday, September 14, 2008

Sleepy dude...

Here I sit, blogging & listening to my iPod & watching the halftime show of the Jets game, while The Boy sleeps and my wife works in the kitchen. I have no problem with this arrangement, but I am - at heart - an absolute chauvinist. To be fair, I did work today: I sang mass (and played a little bit of saxophone, which was fun) and ran some stuff to my father's house before watching The Boy while my wife went to a youth orchestra rehearsal. The Boy and I went for a walk in this oppressive heat, mostly because I wanted to get out of the house in a non-work-related trip.

Tonight, I have to make a couple of telephone calls that are work-related and several that aren't. I will apologize to those that have called me and not received a timely call back. I figured out that my basic school week (8:00 to 3:00) is 35 hours - pad 2 hours of work time at the beginning of the day, which is pre-work prep time. Dapper Dans is 6:30 to 10:30, with travel; church choir is 6:45 to 10:15, with travel. Marching band is 3:00 to 6:30, with setup, four days per week (that's 14 hours), plus all day Saturdays - this Saturday was 10 to 6. That's 64 hours this week, not counting unanticipated work stuff. Next week is different - Friday is a football game, which means I'm not getting home until 10 o'clock or so, and Saturday's competition means, roughly, a 10 to 10 day. Then again, Thursday is The Boy's MRI day, which means I'm playing hookey from marching band and perhaps choir, depending on his state of mind.

It could be worse, don't get me wrong. I love my job so far - band kids are the best kids in any school, without exception. Even the "bad" band kids are still interesting and creative young people, and my two choruses are more interesting and more challenging than they were 12 months ago. It's just very, very hard to be away from my wife and my sick baby for so long every day. I want to be there with him, and with her. I want to help out as much as possible. Plus, when I'm home, I'm so tired that I don't want to do much more than sit down and watch tv or something similarly engaging!

On the fun side, I start to see my own single-minded stubbornness in The Boy. As those who know me will attest, I have a tendency to get focused on one thing to the exclusion of all else. This can be good, or it can be really, really bad, depending on what (or whom) is the result of the focus. I notice that with him: when he decides that he wants something or someone, he will move heaven and earth to get it and scream his frustration to the heavens when he can't. With luck he will learn the restraint that I have never been able to learn; my wife's sensible type A-ness is a good thing. My "hell or high water" type A-ness can be destructive. Time will tell.

All right. I've procrastinated long enough. At least this was a good day for my teams: Yankees won (Derek Jeter tied Lou Gehrig for most hits at Yankee Stadium in a career, 7 games before The Stadium closes its doors forever) and Giants won a laugher over the St. Louis Lambs.

Saturday, September 13, 2008

What a day...

so, I was out all day at the football game and get home just in time for the boy to wake from his nap. Very cute. He "stole" my cell phone to play with, then promptly dropped it between the headboard and the wall -first time he's tried anything like that before. Worst part was the freakish speed that he showed. Having done that, we rassled a bit, then he crawled up on top of me and threw up on top of my head.

I need a shower.

Friday, September 12, 2008

A far more interesting day than I'd prefer

So, The Boy had a relatively easy Diaper Hell night - actually, he slept really hard. None of the nighttime diaper changes actually woke him up, which was the first weird thing. Usually, he's up for a little while with at least one of them. This morning, he threw up again before breakfast and was tired and listless. The Wife called the Valerie Fund Center, and they told us to bring him in.

At the time, I was in the middle of my 4th period class. I handed them off to my colleague, told the office the situation and left. I picked him up from the babysitter and brought him to the Valerie Fund Center around 11:00. They took blood to test his levels and they started him on IV fluids.

When he and I arrived, he was non-responsive and pale. It was a little scary, actually.

Almost immediately, he started to look better. After a little while, he was up and crawling around, getting into everything that he could. It was heartening: in a very short order, he got more color in his face and became more responsive and engaged. I felt better quickly because he was improving.

We were there for around four hours of him getting fluids. He finally napped around 2, and my wife arrived soon after. We brought him home - she stopped off at Shop Rite to pick up some dinner and I took him home and we napped for an hour or so.

The nurses & doctors told us that he had a stomach virus of some type which, when combined with the chemotherapy, caused dehydration. He's not supposed to eat anything until tomorrow morning. That'll be a neat trick, but we'll manage. He can still nurse. I'm glad that this one was not too serious, but it was still really scary.

As my wife put it, it's been a relatively easy ride for him so far. We'd hoped that we could avoid the nasty side effects, but we're not THAT lucky. I'm also glad that my colleagues are supportive and understanding and able to help us out as much as they did. Thanks to all of them. My father and my sister-in-law came by for a long time today, and that was helpful. I'd rather the family watch him when I have to go pee than others, you know?

I think I'm finally coming down with the cold that The Boy's been fighting. My throat is just sore right now, as opposed to tired (and I only taught two and a half periods today!), and I'm really, really, really worn out. Then again, stress and fatigue will do that to you. Plus, I haven't eaten anything today - egg and bagel for breakfast, then assorted crap (a donut, 3/4 of a bagel, some pudding, granola bar) at the center until we just had dinner a half hour ago.

Tonight will be an early to bed night. There's marching band rehearsal and a football game tomorrow, so it'll be a long (roughly 10 to 8) day.

Thursday, September 11, 2008

Ch-ch-ch-change...

So, The Wife brought The Boy to the Valerie Fund Center today for a check-up, considering his temperature and vomiting problems of the last several days. They checked him over and pronouced it a stomach bug, then gave him the chemo a day early. She took the rest of the day off from work and went home. After a nap, they stopped by my school and I showed the two of them off - my beautiful wife and my adorable baby. It was nice seeing them, and The Boy had a good time crawling around the REALLY BIG band room. (Well, big compared to our house. Not so big in the grand scheme of band rooms. Not little, just not big.)

Next week, I'm taking him to his one-year pediatrician's checkup. That should be fun, because he's so much bigger and, well, more interesting than he was at his nine-month checkup! The not-so-fun thing is that, on Thursday, he'll be going in for an MRI and a CT Scan at the hospital. I'll take the day off from school and spend it with him there. He'll get a blood test at the Valerie Fund Center beforehand - HOORAY! NO CHEMO NEXT WEEK! - then get knocked out for his zappy-zappy tests. I'd be shocked if my father didn't come by to spend time, but - well - who knows?

I feel better that he got a clean bill of health, although I HATE the fact that Diaper Hell comes after a 15-hour day (school, marching band, church choir) and before a school day (plus marching band). Sigh. Still, it saves Aunt M. from making the trip from Harrisburg (at $3.50 a gallon, you know?), although I'd like to see her because she's interesting.

Argh.

Don't know what this means about the surgery; I'm assuming that we'll find out next week, after the scans. We'll see. Of course, my friends, I'll keep you updated.

Wednesday, September 10, 2008

Doctor's Appointments?

The Wife is going to take The Boy to the doctor's tomorrow. The oncologist thinks that The Boy just picked up some kind of stomach flu, as opposed to chemo feedback. We'll see. I hope it's something that "simple."

I'm having a lot of vocal issues, as well. My voice is getting very tired very quickly, and my singing is only exacerbating matters. That's concerning, considering that I've only sung on Tuesday nights - and not that much - since the end of June. Sigh.

When it rains, it pours.

Taking the temperature...

So, The Boy has now made it a habit: when he's strapped in his high chair, he begins choking, coughing and vomiting. Fortunately, it's usually before the food comes. Not that that makes a difference, as he's eating an extremely small amount in any meal. This morning at breakfast, he had - maybe - two bites of his eggs and a sniff at some waffle.

He's been whiny and miserable over the last day or two. I left school at lunchtime today because Ms. R, our babysitter, didn't have a decent thermometer to measure his temperature; she wanted to give him some baby Tylenol. It's okay, as long as his temperature is measured first. We don't want the Tylenol to treat a fever that's sprung up because of an infection! That would be Bad. Anyway, I ran home, got the thermometer and spent some time with them. His temperature was a little high - 97.9 under the arm, which means around 98.9 or 99 normally. That's high for him - usually, he's in my range - low 97's. (I run a very low temperature - 97.1, usually, and I >>NEVER<< get a fever. I mean, if my temperature goes to 98, I'm at the doctor's office.)

I gave him the Tylenol and some snuggles (Daddy works when Mommy's not around, although he did call "Mama - mama" a couple of times. I'm interpreting that as "I need comfort" more than "I need my Mommy"). It SUCKS to have to come back to work. The poor kid needs Mommy & Daddy time more than my 9th period band class needs me. Well, my wife will be there in another hour, so it's not THAT big of a deal. Still, it really hurts to drive away and leave him behind.

I suppose I'll get used to it, but I can't imagine being happy about it.

Chemo is starting to take root. I see why week 11 has no medication - this could get really, really bad if his body isn't given a break. Our stress levels, right now, are through the roof, because our baby is in pain and is unhappy and there's not a damn thing that we can do about it.

Cancer really sucks, you know?

This is a tough time. We'll get through it, and it'll just be a story we tell to annoy him at family holidays in the future. His brothers and sisters will be entertained by the scars. I just wish it didn't have to happen.

Tuesday, September 9, 2008

Explanation

Of course, in reading my last post, I don't want to misrepresent myself. It's not that he doesn't let me pick him up or change his diaper or give him food. He does, and we do play. He likes the "rough-housing" that we do - the "throw-the-baby-onto-the-bed" & subsequent "earthquake" is a huge hit. Yesterday, for instance, he took a solid 15 minutes of snuggling before we left in the morning because he needed it. I can do that stuff for him; it's just not really possible when my wife is home.

Today & Thursday are also my difficult days. I teach a full day at school, run right out to marching band, run home to grab a quick shower, a cup of coffee and a sandwich, and back out to chorus rehearsals. I'm home at 10:30, to do my usual evening ablutions and try to get to bed before midnight - easier said than done, I'm afraid. Fortunately, Wednesday is an easy day - home at 6:30PM for the night - and Friday will be easy on non-chemo days (which start after this Friday). It's a little intimidating to have, essentially, 15 straight hours of teaching with no real break. I can do it, though - I've done it for years. The tough bit will be when morning jazz band starts and I'm in school at 7AM for 7:30AM rehearsal. Gag me.

So, I'm more concerned about taking care of The Boy when I'm not around to help my wife. I understand that it's just marching season and will be over after November 10th-ish. It doesn't make it any easier, emotionally. She's a tough broad - she'd have to be, to deal with me on a daily basis - but The Boy can be difficult to handle sometimes, when you have no break after work.

We'll see. The two nighttime activities that I participate in are paid activities, and we need the money. (Still haven't seen hospital bills yet... we wait with baited breath.)

Frustration...

We've now started a trend, apparently. Every time that The Boy gets strapped into his high chair, he starts hacking and coughing and throwing up. This is not good. Yesterday, when my wife came home from work (I was watching him, at home), she peeked in on his nap and remarked that, for the first time, he looked sickly.

We knew that it had to happen, eventually. I mean, he just finished week 9 of chemotherapy, which is - here it is again - a cumulative process. At some point, it would have to catch up with him. He didn't sleep much on Saturday night, didn't nap enough on Sunday, didn't sleep particularly well on Sunday night, and didn't nap at all on Monday. No wonder the poor kid looks like heck.

It's frustrating. I'm a guy. I want to FIX things.

To make matters worse, the mommy-attachment thing is growing stronger and - frankly - more desperate. I just can't seem to catch a break with the kid! If my wife is in the house, he won't play with me, won't relax with me, won't sleep / nap with me, won't be comforted by me. It's frustrating. A few months ago, I feel like I was a full 50% partner in The Boy. Now, because I'm not allowed to help him BY him, I feel like I'm a 25% partner at best. I know that this is a pendulum thing - in a few more months, he'll be all about Daddy. But, during this time of need, I want to be able to help. I want to be able to rock him to sleep. I want to be able to cuddle him when he's sick.

Frustrating. Not a good weekend.

Sunday, September 7, 2008

Hey, Jealousy...

(Extra points if you know the song.)

The Boy has started an entertaining new trick. As many who know me will attest, I'm an affectionate person. I like to hug my friends when I see them - not just give a handshake. I still roughhouse (gently) with my father and brothers. I like physical contact. I hold hands with my wife whenever I have the opportunity, and I like snuggles with my family as often as possible. This morning, The Boy had crawled down to the foot of the bed to stretch out during an extended wake-up time (lo-o-o-ve Sunday mornings). I snuggled up close to my wife and put my head on her shoulder. He crawled up and began pushing me off my wife. When I had retreated to a safe distance, he stuck his thumb in his mouth and flopped on top of her as a little-boy-blanket.

It's very cute. He's very possessive of his mommy. He does not want to share her at all! This isn't the first time he's done it, and I'm sure it won't be the last.

At the party last week, it really was funny watching him interact with Baby Z, who is a year older. The Boy gives kisses and hugs by touching his forehead to the other person's forehead, and The Boy was trying to give hugs and kisses to Baby Z. Baby Z, who doesn't know The Boy and was a little wary of this other little person, was having none of it and retreating faster than The Boy could follow.

Babies are entertaining.

This weekend wasn't as bad as we had feared, chemo-wise. I mean, The Boy did spend some time throwing up last night, which was scary. But, he cried when I gave him the anti-nausea meds and not when he was hacking, coughing and puking. From a fortunate timing perspective, he started hacking and cough when he was in his high chair with a bib on, so all that happened was a change of bib and a wipedown of the high chair table. He ate dinner afterwards.

During weekends like this - the tough chemo weekends - he generally doesn't eat much. Yesterday and Friday were no exceptions. He played with the food on his plate and put the food in his mouth to taste, but he spit it back out and did not eat very much. I think that Diaper Hell week went a lot better than we had any reasonable expectation that it would, but I'm glad that we only had a short marching band session on Saturday so that I was available to help out.

Today, after church, I came home and ate lunch with the family. My wife went grocery shopping, and The Boy and I played until we fell asleep watching the Jets game. (Jets won, 20-14. Both New York teams are 1-0, and Michigan won on Saturday and Rutgers won on Monday of last week. Good football week. I'm hoping that the Yankees will win today, taking 3 of 4 from a horrible Seattle team, making a great sports weekend.) Now, we're snacking until I go outside and put his baby tricycle together.

Saturday, September 6, 2008

Lazy Saturday...

My marching band doesn't have an indoor rehearsal site - particularly on weekends - so I got home about four hours earlier than expected today. It's a little disappointing, frankly - the group was working very well and with reasonable efficiency, so I would have preferred to keep playing. Whatever - it's tropical storm Hanna's day.

Don't really have that much to say today, frankly, but I'll say it anyway. Chemo went well yesterday - my father met my in-laws at the hospital for The Boy's day. His counts were good, he received all his medication, and he peed orange/red for the rest of the day. He slept for most of the afternoon and fell asleep around nine o'clock at night, while The Wife and I were watching a few episodes of House. He slept through night remarkably well, considering that we had to change his diaper every two hours. As a matter of fact, the only diaper change that woke him was the 7AM one!

He's now "helping" my wife fold his diapers. Specifically, she's piled the various diaper parts around her on the couch. He's taken them off of the counch, one by one, and thrown them on the floor. Now he's turned his attention to the pile of folded diapers and has busied himself moving that pile to a new (messier) pile a few feet away. Silly baby.

Yesterday evening, he learned a new trick. He got, from the nurses at the Valerie Fund Center, a really cool toy for his birthday: a little "tool case" with a plastic hammer. You put the plastic shapes in the appropriate holes, then "hammer" them home. He has loved pushing the shapes down with his hands - this creates a pleasing set of noises and lights from the toy. Yesterday, he finally whacked them with the hammer to get them through! It was really cool.

On the "uh-oh!" side of things, he figured out that the arm of the new armchair lifts up, revealing four remotes (TV, TiVo, Cable, DVD) and two Playstation 3 controllers - in other words, a new toy box. Sigh. Not a problem when one of us is in the chair and holds the arm down easily, but... most of the time, we're sitting on the floor with him.

Michigan just beat Miami of Ohio. I think we're going to drive to the comic book store and then to the mall, to walk around. When we get home tonight, I'm going to clean the bathroom and vaccuum the upstairs - maybe even straighten up the guest room (my in-laws left yesterday after the chemo - and, boy, we miss them already). Got to go, because The Boy has decided that he wants to read today's junk mail.

Thursday, September 4, 2008

You put your left hand in...

This has been a real whirlwind couple of days in our lives. I mean, big time! Besides the fact that The Boy has his top two molars coming in, things have been... well... weird.

On Tuesday, The Wife called down to Philadelphia to set up an appointment with Dr. Doolan. His secretary was not in - didn't get back from her vacation until later in the week. The covering secretary said something along the lines of, "What surgery? There's no surgery this week. I don't know who told you that, but it's wrong. There's no surgery." Ummm... okay. What?

Making a long story short, The Wife had an appointment at 11AM down in Philadelphia for an examination, but no surgery. The Boy would not be checked into the hospital at that point, and the surgery would not be on Thursday. And, Tuesday afternoon (because they didn't tell us this earlier), we had to arrange for the CD with the radiology report and all other documentation to be over-nighted to the Children's Hospital of Philadelphia from St. Barnabas so the doctor had the new info. After all that, the appointment then got changed from 11AM to 2:30PM. Whatever.

The Wife & The Boy & Grandma drove down together. The doctor - who was, points in his favor, very well-versed with The Boy's specifics - examined The Boy. He told them that the tumor that was removed was not entirely malignant stuff - some of it was benign tissue. Remember how the cells could turn into tumor or kidney? Some of it was just benign growth of extra cells. Anyway, he also said that the other tumor was not responding to chemo like Wilms Tumors typically do - this one was swiss-cheesing, but not actually shrinking. This leads him to believe that the most likely scenario is that the second tumor is (pretty much) benign mass and not malignant tumor. It still needs to be removed, but it's not as worrisome.

Of course, there's the (small) probability that the tumor is just really, really vicious and doesn't respond to chemo because it needs harsher measures. I'm not allowing my mind to drift there.

The Boy will go through one more cycle of chemo, then a CT Scan and an MRI. The MRI will tell Dr. Doolan whether or not the tumor is benign or malignant better than the CT, although the CT is necessary because it shows how the tumor has grown / shrunk since the original CT scan back at the end of June. This means that four more weeks - including tomorrow - of chemo, followed by one week to let week 13 to take effect, then testing.

There is good news, though: after week 10, The Boy does not receive meds during each chemo visit. Some weeks (like weeks 11 & 14) there is only testing and no drugs. That's good news, because it means that Diaper Hell doesn't have to happen every week. Let's hope.

Work is fine, although it hurts like hell to drop the boy off at the babysitters' each morning. Ms. Randi is really, really nice and experienced, but it's hard to leave him alone - even if I'm irritated at him like I was this morning, for waking me up at 5AM.