Wednesday, December 30, 2009

5 more days...

Today was a wonderful day. Yes, we have a hellish deadline coming with Monday's surgery, but we again show how resilient young life can truly be. We all woke relatively early - well, all except The Boy, who is enjoying an 11pm bedtime and sleeping in. Mommy had a dentist appointment and Grandma had swimming class, so Daddy and the boys were left to fend for ourselves. We managed to survive. I made The Boy's "egg cheese! Egg cheese," even if he actually had to wait a little while for it. He ate three whole eggs worth!



After breakfast was good, old-fashioned play time! The Boy did his best to destroy the loving room, and Younger Bro struggled to avoid his morning nap. Today was interesting in that 90% of my child time was with the baby instead of The Boy. Usually it's opposite that, and I was glad for the change. YB is a charming, fun baby, and the better I know him, the happier I am that he's in our life. Granted, I'd still love for him to snuggle me to sleep, but that's just not in him yet. There's time, and i've met few toddlers that I can't convince to sleep in my lap.



When the girls got home, the playing got better. I chased The Boy around for a little while, which he loves! I chase him through a couple of rooms until I catch and tickle him, then he chases after me. I "hide" behind a door or counter or something, he finds me, and I jump out and yell, "Boo!" He falls over laughing, usually.



Lunch was nice. The four of us sat in the kitchen together, and just talked while we ate. Granted, YB didn't have much to say beyond "Da da da da" and "Bla bla bla bla bla," but he tries. The Boy chimes in about the noodles or beans, but he doesn't have that much to say, either. It's still nice to hear their voices. It's interesting that I find it a minor concern that The Boy puked up his entire lunch and some of his breakfast. We saw the signs, caught the vomit, gave him Zofran to help him feel better, then gave him a fresh plate. No harm, no foul. Is that odd? Do normal 2-year olds do this?

More playing after lunch. At 3, I unexpectedly had my oral exams for my Master's from Western Governor's, and - surprise surprise - passed! That, and three quick forms, and I was done done done with my degree. All that's left is the diploma form. Finally, after two years and two months...



To celebrate, The Wife and I went out to dinner, and we used a gift card that someone gave us a while ago. Nothing fancy - just Houlihan's. It was still nice to get out. I wonder what parents who don't have cancer treatments talk about, without scheduling, surgeries, counts, hospital visits, nurses and doctors? The Wife recounted the story of a cancer mom who took her kid - who had just busted his leg - to the emergency room ad was calm. Most parents would be freaking out... but a busted limb, while unfortunate, is nothing compared to surgery and chemo recovery.



We got hom for a nice little cookie cake that said congrats to me. The Boy ate the icing flower but was uninterested in the cake... yet asked for "More cake!", meaning more icing. Anything that turns one's mouth colors is good by definition. While he ran that sugar high off, I organized more boxes and such. Only about seven more boxes before we're straightened enough to accept more from the locker!



Five more days until the surgery. Dental work on Thursday; no plans for New Year's yet. Any year that ends with the same number or more sons than I started is a good year. Really not looking forward to the surgery, but I'm intensely curious about what caused those lesions.



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Monday, December 28, 2009

Frustration...

So, we called, first thing in the morning, just like good little boys and girls. The surgery scheduler said that she'd track down the surgeon and get us a surgery time. Our oncologist was onboard with that. We waited. Around 2, she called. It turns out that the surgeon hasn't returned into town yet from his Christmas traveling, and he wouldn't be back until next week. So, we have a surgery time scheduled for an unspecified time on Monday, January 4.

Great. That's just... great.

I suppose there's some benefit for having a rested, relatively stress-free surgeon, as opposed to one who has made the rounds of holiday parties and is still hung over. However, I'm starting to have flashbacks to scheduling the surgery at Children's Hospital of Philadelphia. That surgeon was a royal pain in the ass with which to deal, and I do NOT want a repeat of that. We need to have confirmation that the 4th, indeed, is when he will be operated on; that the promised scan will occur before then; and that we have the hospital location correct. (His office is at a satellite branch of the hospital.)

Also, I >>really<< don't want this continual pushing-back of The Boy's surgery. Last time, after September scans indicated some spots, and October scans indicated growths, the surgery got pushed back from September... to the beginning of October... to the middle... to the end... and finally to the beginning of November. And, instead of removing spots, they removed a fist-sized tumor.

That will NOT happen again, at least not without me rearranging someone's face with extreme prejudice.

Other than that, it was an uneventful day. We got some boxes out of the storage locker. I relocated, inventoried, and restacked many items, probably a solid 25% of the house-stored items; I really think that, with the surgery rescheduled, I'll be able to have the house re-ordered and begin moving things from the storage locker back to the house by the end of the week. I got in lots of nice playing, and The Boy and I had our infamous "Elmo Daddy Yes!" time. (That's the code words for "Daddy and The Boy take a nap together.) We had a nice family dinner, with Younger Bro going to town on several broccoli florets - green beans tomorrow, maybe!

Now, we have the specter of my family's first visit, and trying to get the conflict between my family and my wife's family simmered down enough to survive the visit and the surgery. The last thing I want to be doing is to have to play goalie at potshots from both sides, or to have to choose where to spend my time, or to have to deal with other people's issues while my son has potentially catastrophic surgery. Ugh.

Sunday, December 27, 2009

MLIA

(Stands for My Life Is Average - a fun website that I just discovered.)



Today was, so far, an utterly average day. I'm literally thrilled about it!



At 5 this morning, The Boy woke up and decided that he didn't want Daddy anymore, and he toddled off to find "Nama." That was fine, because Younger Bro needed more attention at that moment. He came into bed with us, and proceeded to do his eating thing. About 20 minutes later, I felt two hands pulling at my pajamas, then a damp little mouth chewing on my side.



It beats getting bopped on the head. I guess.

I snuck off to the boys' room, because I really wanted to pull covers up to my chin without smothering a child. We all simultaneously woke at 8:30, then went to breakfast.



I'm leaving out the part about The Boy's 10:30pm noodles and 12:00 ice cream. Lord knows he needs to be fattened up.

After breakfast, we went to the mall and walked around for a couple of hours. We had a nice, relaxing afternoon.



The Wife took YB and Grandma to a baby shower, leaving The Boy and I. He's been playing while I've been unpacking and cleaning.



Oh, yeah: YB had his first solid food yesterday! Broccoli! It was extremely cute. And, we know he ate some. We have evidence.



(broccoli in his diaper, we'll say.)
Granted, he doesn't completely get the eating thing:






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Friday, December 25, 2009

Children's Hospital of Pittsburgh

The Room: The room in the PICU was... well, a PICU room. The bed and the surrounding equipment is a bit cramped, because there are a lot of monitors that have to be plugged in. Nobody expects that the PICU is comfortable. The room up in the hemo / onc ward was quite a departure from the room in St. Barnabas. The room is much larger than we're used to, about half again as large as the other hospital. There is a couch in the room, as well as one padded chair. There isn't really a chair to attach The Boy's booster seat, which could be a problem eventually. For now, he ate sitting in bed, with the table pulled in front of him, or he ate sitting in the booster chair on the floor.

The floor and the door are wooden, which is a more friendly touch than the institutional linoleum we're used to seeing. All of the rooms have bathrooms with a spacious shower, which is REALLY nice! There isn't a refrigerator in the room, though, which is a negative. The parent lounge - which has a kitchen table, microwave, large refrigerator, and a coffee machine with lots of coffee that parents or nurses make - is suitable for those needs. All-in-all, I like the rooms much better, here.

The Food: At St. Barnabas, every patient received a customized menu (if they were pediatric, or nephrogenic, or cardiac, or whatever) that was filled out in the morning, for dinner and the next day's breakfast and lunch. The meals were brought at whatever times they arrived. Each room has a small refrigerator, and each floor has a large refrigerator / freezer that was kept stocked with juices, jellos, and pudding. At ChoPitt, the patients call food services and have the food or snack delivered up to the room in 45 minutes or under. They have a wider variety of meals, and the meals are much more customizable. Snacks are available from the food services with a telephone call. The nurses can bring some juice, jello, or popsicles when requested, particularly during the off hours, when food services is closed.

The down part? If you're like me, and sleep as long as The Boy sleeps, then you have a grumpy and hungry toddler for 45 minutes while they're delivering "egg cheese bagel!!!! Egg cheese bagel!!!" It just means that some planning and anticipation is required.

An interesting thing at CHoPitt: when you're done with the tray, you don't take it anywhere outside of the room. You put it in a cabinet; the cabinet has a second door, outside the room, where food services folks can retrieve the dirty trays. They have a similar system for dirty linens.

Which do I like better? I don't know. They both have plusses and minuses. I like the customization of Pitts, but the 45 minute delivery time is a bit of a pain sometimes. The advantage goes to Pitt, mostly because they provide coffee for free for parents. At Barnabas, I had to have the right food services person deliver the food in order to get comp coffee.

The cafeteria in CHoPitt is more extensive than Barnabas, but only by a little bit. They have "Seattle's Best" coffee instead of Starbucks, which is a plus. On the down side, Barnabas has much better desserts. You can buy a food delivery from food services for $5, to be delivered with your kids' tray, but you have to go down to the cafeteria to buy it.

The nurses: Just like at Barnabas, it's a mixed bag. Most of the nurses are really sweet people; if you work in pediatrics, then you have to enjoy what you're doing. There are great nurses, okay nurses, and nurses that we want to avoid. The nurse we had on Tuesday night is one in which I'm not a fan: the every-8-minute-interruption from 1AM to 4AM is a real problem, particularly when we were NOT dealing with the serious part of The Boy's treatments. Barnabas has the advantage, mostly because they had Sharon in the Valerie Fund and Tisch upstairs. We just haven't found the Sharon and Tisch at CHoPitt yet.

Parking and Entry: At Barnabas, we knew how to get free parking in the lots. Also, I knew all the security guys, so I never stopped at the registration desk. Free parking plus quick entry is a real plus. At CHoPitt, people have to stop at the front desk and wait to get a name badge printed out by the folks behind the desk. I've waited 15 minutes there for entry, which is frustrating. Let's just say that they aren't in a rush there. Parking is $5 a day, or free if you go in the outpatient clinic. I suppose that, once we know everybody, we'll be able to get free parking on weekdays by getting outpatient to stamp our tickets, but we're not there yet. Barnabas has a clear advantage there.

Other Stuff: Younger Bro is welcomed on the floor, not prohibited like at Barnabas. That's a BIG plus. They understand that the hem/onc siblings are safer WITH them than stuck in someone else's care, and we appreciate that immensely. Obviously, the baby doesn't go into the PICU, but that's just common sense. In addition, The Boy was encouraged to go for walks around the floor when he was healthy enough to move. At Barnabas, he was encouraged to stay in his room. It's nice to let him walk around, or carry him around. They also have playrooms for the hem/onc kids that are separate from the normal playrooms, and a playroom for isolation kids. That's a BIG deal, particularly if they wind up ramping up The Boy's treatments post-surgery.

I had a lot of fun pulling The Boy around in a big, red wagon on Thursday. He really enjoyed that, and he also spent about 90 minutes in the playroom wrecking lots of stuff. Those are both good things.

In addition, we spoke with physical therapists, respiratory therapists while we were inpatient. He got respiratory therapy every 4 hours - albuterol through a nebulizer - and chest therapy, which was basically pounding on his back to help loosen stuff up. That was nice to see. We also were loaned a nebulizer, and the hospital pharmacy refilled all of our prescriptions for him on our way out.

The Doctors: I liked the PICU doctors very much. The lead attending was a real no-nonsense kind of person; when she spoke, she spoke with authority and conviction, and her underlings jumped when she told them to jump. The attending under her looked like Joss Whedon, which was kind of cool.

The hem/onc floor attendings and residents were the normal mixed bag. I scared away a couple of first year residents ("Go get Mommy or Daddy, please, so I can get some answers."), and the second and further year residents quickly learned to mind their P's and Q's when I was around. One of the 4th year residents took a real interest in The Boy's case, and checked in quite frequently on him. The lead attending on the floor reminded me very much of the guidance counselor from my first job: a crusty old dude who has no issues telling it like it is.

I didn't get to meet any of the attendings on The Boy's oncology team, nor did I meet any of the attendings on The Boy's surgical team, so I can't pass judgement. It is cool that his lead oncologist is a fellow iPhone addict and responds to emails, usually, within minutes. I don't know if he'll be as cool as Dr. Rifkin, who is a certified sci-fi nerd, but the iPhone helps.

Apparently, the hem/onc ward frequently gets visited by local sports folks. I think it'd awesome to meet some of the baseball players in town... 8)

Big negative: no local Chai Lifeline office. 8(

2nd Best Christmas Present

We got home yesterday, around 4 o'clock. The only holdup was waiting on nephrology; Dr. Moritz wanted to make sure that the new blood pressure medications were doing what they were supposed to do. We chased The Boy aroud the house for a little while, then he napped from 5:30 until around 7. We played until 11, when he slept with Grandma.



Full hospital impressions will follow later, when I'm at a keyboard instead of my iPhone.



This morning, I was again woken by a teeny-tiny little fist beating on me. Younger Bro and I played for a while, then we all got up to help The Boy use his nebulizer for the albuterol prescription.



Afterwards, he and I went downstairs, and I got an amazing several hours of snuggling with The Boy. It was very, very nice. I love those moments when he kind of wakes up, looks at me, then allows himself to fall back asleep.



The fact that he's a sbugglebug helps us get through this hell as much as it helps him, you know?



YB was quite fun all morning, too. He was even chewing on the kitchen countertop, which I found hysterical.



I'm in bed right now, trying to shake the splitting headache that I've had for three days. Have a wonderful Christmas, folks.



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Wednesday, December 23, 2009

Almost Human...

That title, "Almost Human," actually describes both The Boy and Musical Daddy. The Boy is acting like a real two-year old: playing, talking, complaining, "Nonononono," and stuff like that. He slept well last night, mostly because I played goalie and started bouncing people back into play instead of letting them annoy The Boy for no real reason.

Musical Daddy, on the other hand, left the hospital at 9:45AM, after having slept for 45 minutes total (in three chunks), then for another half-hour or so after 8AM. I got the most thorough teeth-cleaning I've ever gotten, from The Wife's cousin, who is a dentist. I stopped at Dunkin' Donuts on the way home for a breakfast sandwich; I considered the decision justified by G-d because the parking space I used still had 15 minutes left on the meter. I got home at 11:15, talked with Mommy for a bit, then changed into my pajamas and went to sleep at 11:45.

Woke up at 5:15.

So, it's almost 6 o'clock, and I've gone nocturnal again. Sigh. I'm going to shave & shower, then run to the comic book store and Trader Joe's before heading back to the hospital for the night. Should be fun.

No news about The Boy. Considering that the surgeon never came, it is likely that we won't have surgery until next week. No word as to whether or not we'll have some time at home before the surgery; likely not, as The Boy was still spiking a fever late at night. It's hard to say what they're going to do, as there isn't the pressure to get everybody home before Christmas in a Jewish household.

I'm not entirely sure how I feel about having absolutely no Christmas this year. We've always kept a kosher home, since we moved into our house in 2004; but, by the same token, the one accommodation that I've asked for is a Christmas tree. I love Christmas decorations, I love Christmas music, and I love Christmas presents.

By the same token, right now, I'm more than a little bit numb to the whole world right now. I'm not entirely sure what day of the week it is; heck, after sleeping the entire day away, I'm not entirely sure what time it is and whether it's day or night. For the past two years, we've spent Christmas - and most of Channukah, for that matter - in the hospital, and we've spent most of the month of December in the hospital. This means that I haven't done any decorating, any caroling, any anything. Therefore, it doesn't really feel like Christmas. Factor in the fact that my entire interaction with my family over Christmas will be over the telephone or the webcamera, and that just kind of cements the fact that December 25 has turned from my favorite family holiday into just another hospital day.

I'm reasonably certain that we're not going to spend every December in the hospital. I'm reasonably certain that, at some point, I'll be able to have my tree and my decorations - I brought my fun 6-foot inflatable snowman with me to Pittsburgh, among other fun stuff. Right now, it doesn't seem it.

Yet another thing cancer has stolen from us.

Playing in the New Sandbox...

So, The Wife spoke with the new nephrologist today, who said that he didn't want to mess around with The Boy's medications while he was recovering from something. Yeah, that lasted a long time... like, about three hours.

They're messing around with The Boy's medications while he's recovering from... whatever it is he's recovering from. (Yes, they still haven't given it a name.) They're canning the minoxidil and replacing it with isradipine (please excuse the spelling). Yawn. I've seen this movie before.

Here's how the plot goes: The Boy gets admitted for a neutropenic fever. His blood pressure goes through the roof, because he's off his medications or his medications don't work well while he's under extreme stress and NO rest. They mess around with his medications until they find something that works well enough, then they send us home. Repeat as needed.

I'm not a big fan of tonight's nurse. She's a subtle as a sledgehammer, meaning that The Boy wakes up every time she walks in the room. She's also one of those that needs to talk down to me because I'm a Dad, and that really pisses me off. I know that most fathers are barely aware that they have children, and that I'm an exception... but, come on. Really?

I'm quite irritated at the moment. Tonight has been a terrible night, when it's come to outside disturbances. From 1AM until 4:15AM, someone came into the room every ten minutes to do SOMEthing. Take vitals... change an antibiotic... respiratory therapy... more vitals... check this... check that... Long story short, The Boy didn't fall asleep until after 1AM, and I didn't fall asleep until after 3. That sleep lasted from 3:15 until almost 3:25, when the nurse came in to take the CBC. (Oh, and she doesn't shut off any of the alarms on the machines while she works. That's just great.)

When the resident came in for the 4:15AM check, I kind of lost it. "Unless you've got a cure for cancer, walk out and don't come back until after 6. This kid is getting 2 uninterrupted hours of sleep if it kills me." That lasted until almost 4:45, when one of the leads on his chest fell off, and nurse had to replace it, necessitating flipping him over, opening his gown, unsticking the one lead, and replacing it, then massaging the wire until it started to pick up what it needed to pick up.

Man, I gotta get out of here and sleep. I'm going crazy. I have a dentist appointment at 10 that I really don't want to go to, and then I need to sleep until dinnertime. I've had one night of remotely decent (read: not interrupted every 15 minutes) sleep in the last week.

Tuesday, December 22, 2009

Surgical Resident

The surgical resident came in today. I honestly thought that she was a volunteer from the local high school. Anyway, I gave her a detailed summary of The Boy's surgical history and a summary of his oncological history.



It became apparent that she hadn't really read his medical history or listened to me. She examined his belly and said, "The incisions look good!" I replied, "They should. They're more than a year old. If they didn't, we'd be a lot more concerned."

She left, studied his chart for reals, then told me that she'd get Mommy or Daddy (otherwise known as the surgical attending) to come speak with me.



Sigh. Frightened little bunnies, indeed. Scrubs is WAY more correct than we want to think.


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Grumpy and Grouchy

So, I'm reasonably certain that The Boy's getting better, because he has been a huge pain in the butt for the past 24 hours. He has been a real 2-year old, disagreeing with everything, speaking incomprehensibly, throwing and breaking stuff, and pouring juice / cereal / noodles on the floor just because he can.



He is still spiking brief fevers every couple of hours, but the intensity and duration are decreasing. The last one went up to 38.3, which is the lowest crest he's had. The cough is still present, but mostly only after or during a tantrum. (Hence Musical Daddy's theory of the congestion causing the cough, which few of the doctors and none of the respiratory therapists believe. When will they learn that I'm always right?). They took some nose and throat cultures last night. That's accomplished by sticking swabs up his nose and down his throat, and by spraying water up his nose and suctioning it back out.

That went over swimmingly, let me tell you. The last time I saw bucking like that was a rodeo in Branson.

The diarrhea is still wonderfully present - thank you, vancomycin. You're the gift that keeps on giving. That continual spray of water has given him the usual nasty diaper rash. That makes the diaper changes an adventure.



Mommy spent most of the day at the hospital with Younger Bro and The Boy, and it was quite nice. YB was quite well-behaved and fun. He's starting to be quite reactive to us and to prefer one of us at different times. He definitely recognizes Musical Daddy as being fun and giggles, which I like. He enjoys turning over from back to front and front to back, particularly when we're putting pants on him. He can do "baby push-ups" when on his belly, and he's starting to push himself backwards. I'm so excited for him to start crawling and standing! It takes work to keep up, but it's lots of fun.



Plus, YB is now grabbing everything within arm's reach, including trying to get food and drinks from us. (And MD's iPhone, which isn't going to happen.)



Last night was relatively easy. The Boy was up until 11, but he let me watch some of the Giants game before bedtime. He was up and playing at 5:30, which is etter than the previous night.


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Monday, December 21, 2009

5am Playdate

It's 5:15am, and The Boy has been awake for about 90 minutes. Fortunately, he's been awake and playing, with a truck, his stacking blocks, and Playdoh.



It's a nice change over the previous two nights. He's still feeling crappy, and somewhat febrile, and coughing too much. However, he's still The Boy, and that counts for a lot.


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Sunday, December 20, 2009

What a Day...

Grandma and The Boy had a rough night Saturday night. He's been having significant breathing issues, with very fast, shallow breaths and congestion. Lots of coughing, just like my own breathing, pseudo-asthma issues. Mommy and I, meanwhile, went to a musician's holiday party for a while, then got the car stuck overnight in a snowdrift. (No harm. The car was freed in the afternoon.)



He's been spiking fevers, then returning to normal, then spiking again, all while these breathing issues are continuing. The tachocardia seems to be gone, but the machines say that he's averaging 90 breaths per minute, which isn't good.



Still, he got some good playmat time today. That's a good thing. And, I got six hours of uninterrupted (well, except for Younger Bro smacking me on top of my head at around 6:30 this morning) sleep. Also good. The whole situation is not good, although we've upgraded from scared to concerned.



I did get some great Younger Bro time today. He's really starting to want to be with me, which I like. He's giggling in anticipation sometimes, and he gets mad when I stop making him giggle. That boy still loves chewing on my fingers, and he attacks them like a cat pouncing on a mouse. It's funny watching him attack my fingers then take full-jaw chews on them.



The Wife and I went out for breakfast on the way to the hospital, and we took YB with us. He's so happy and fun... He really charmed everyone at the restaurant.



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Saturday, December 19, 2009

It's Quarter to 3...

4:45 chest xray. Blargh.


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Annoying

I hate intensive care. It's the most intrusive, least restful place imaginable. Still, I feel a lot better that we're here.

The Boy is packed in ice bags right now, in an attempt to bring his temperature down to normal levels. It's still over 103, but it seems to be stabilizing instead of increasing. They put another IV line in his foot, as his port is running adrenaline into his Body to attempt to bring his tacicardia (way too fast pulse) in line. It's been up around 200 bpm for eight hours now.

Of course, his pulse drops into the 140's, and he's sleeping comfortably. So, what happens?They put oxygen blowers into his nose. Hello, 210's and a wakeful, pissed-off The Boy. I shouldn't complain - I mean, I got my 20 minutes of sleep.

I just don't want my son crying in pain and begging for juice that he's not allowed to drink.

Happy Hannukah. I'll bet Christmas is going to be awesome.

This one is scary.


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Friday, December 18, 2009

Emergency Room

Update on The Boy: we are currently in the emergency room waiting for a room upstairs in oncology. There is a spot of pneumonia on his right lung and we are really unhappy about that. More information will follow as we learn it.

I am interested to see what the rooms in oncology look like. I have heard great things about them. We are waiting for vancomycin as soon as they hook that up we are going to go upstairs.

The boy has a fever of around 103 degrees and is short of breath, so there's an oxygen tube blowing air at him. He is resting uncomfortably right now, drinking juice and watching Super Nanny because none of us know how to change channels on the television.

I am writing this blog on my iPhone using new software to take dictation. I am speaking the blog, which is really cool and a definite plus new gadget.

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A couple of notes...

So, when The Boy is being 2 years old and responding with "No!" to everything, I ask, "Do you want a car when you're 17?" That's really funny and cute to listen to the no response, except that he's now started asking for "Car 17!"



The other night, he got really upset when we didn't have car 17. I mean, full body, 30 minute fit fit fit. The Wife tried drawing a 17 on a car, but he wasn't buying it.



In other news, he got platelets yesterday, and I got my first experience at the hospital. It's nice! The nurses seem... well, like nurses. I wasn't impressed or distressed by them, which is a good sign.



He's got hair!!! (Just shows to go ya what happens when he doesn't get chemo for six weeks and then get a half dose of carboplatin.)



I also signed up for my reserve box at the new comic book store. They're nice. They had a Christmas tree with some presents, and The Boy went right after the presents. I told him, "They are pretend presents; the boxes are empty!" He understood that.



I've also had some great Younger Bro time since I got back. (The above picture: Kilroy was here!)


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Thursday, December 17, 2009

Quick update

The concert went quite well on Monday. The principal said some very nice things about me, and the students, to a person, lined up for hugs and goodbyes. They were also quite generous with presents, something which always humbles and awes me. Thank you!

Got everything loaded by about 3:00 on Tuesday, including a trip to the Elizabeth YMCA for the women's shelter. They got our crib, window air conditioner, a stereo or two that is hopelessly obsolete but still functional, and some other things.



Loaded the car onto a tow-hitch, and I was on the road at 4. The trip was blessedly uneventful, save for some snow in the mountains. I arrived in Pburgh at around 11:30 and was able to have a nice conversation with my wife. She's smart.



The Boy was asleep and didn't wake when I got him from Grandma. he snuggled up nice and close to me, which was deeply necessary for my mental health. Around 4, he finally noticed me - "Dah-Dee! Dah-Dee!"



The rest of the day went relatively smoothly - unloaded the truck for the stuff staying at the house, unpacked a bit, played a LOT. The Boy was quite upset if I left the room he was in. I get that: last time I left, it was for 3 weeks. He's cautious.



Bedtime was a challenge. I think we might just bite the bullet and get a king size bed that will fit everybody, particularly if the spots do turn out to be new cancer. Positive feelings help healing, and it doesn't seem worth it to leave him screaming and unhappy in his room.



Plus, if it does turn out to be new cancer, then I want every minute with him that I can get.




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Monday, December 14, 2009

Awed and Humbled

This weekend, about 17 to 20 people stepped up to the plate for us, and a major league grand slam was hit. I am awed and humbled by the outpouring of friendship that was shown, as the workdays on Saturday and Sunday started around 8AM and went to 8PM - both days.

Here's what got done:
Painted the living room, dining room, two hallways, stairwell.
Removed the border in the kitchen wall, repair the wall, painted the kitchen.
Removed and fixed a half-dozen tiles in the kitchen floor.
Stripped the wallpaper; repaired the wall with joint compound; sanded; primed; painted the bathroom. MVP of the weekend goes to Laura, who put in a solid 20 hours of HARD work over two days.
Primed (twice), four coats of paint on the formerly forest green music studio.
Wall in the garage repaired, re-insulated, re-drywalled.
Yard raked, mowed, cleaned up.
Garbage and old paint cans hauled away.
Floors cleaned up of paint.
Kitchen and refrigerator cleaned and sparkled.
Floors in most of the house cleaned and polished.

Thank you very much, battalion of friends and workers. You have, yet again, shown us how blessed we are. In the worst of times, in a dark hour, you came through for us, and we appreciate it immensely.

Pictures to follow.

Saturday, December 12, 2009

Big Weekend

The stage is set: the house is prepped, about 95% of the way; the walls have been spackled (not sanded); the paint has been bought, there are four rollers and a half-dozen brushes. The painting should be knocked off pretty quickly. There's some minimal packing to do before I leave on Tuesday; that should be knocked off quickly. I really think we're going to do this thing up quite nicely.

We even found a charity that wants to keep our old things - some kitchen chairs, some bookshelves, some cabinets & tv stands, dishes and silverware. It'll mean an extra trip around with the truck on Tuesday, but that's okay by me.

I can't believe that I'm still awake. It's what happens when friends come to visit, and it's a good thing. It is, after all, why G-d invented coffee....

Thursday, December 10, 2009

Doctors' report

From Logical Mommy's Blog:

We don't know much more than we did before. They did not reach a consensus about what the lesion is, whether it is tumor or a walled infection or whether it is something that is going to disappear. The doctors seemed to think it could be tumor; at least one radiologist thinks that it looked more like an infection. Regardless, here is the plan:

The Boy will go in for surgery once his counts recover. Before surgery, they will do an ultrasound to see if the lesion is, in fact, still there. The Boy had spots on his lungs in a scan done at the end of April that disappeared on the next scans, but those were from his cold that he had at the time. If the spot disappears, of course they will do no surgery. The surgeon indicated that it would be an easy procedure and may even be able to do it laparoscopically.

Once they do surgery, they'll have it analyzed to see what it is.

If The Boy has more tumor growth, they will go on to find a new treatment for him, likely a Phase I Trial (a study of some kind).

On the same subject, The Boy has had awful poo all week. Stool cultures were negative, as was the C-Diff test. I asked about The Boy's liver function tests and if they had been done recently. The doctor said that his liver function was normal for his chemo protocol, but they'd draw another one with his next labs. It is possible that the poo is related to the liver issues.

What they did not say was that they are giving up.

Wednesday, December 9, 2009

Punch to the gut

I've been walking around in a daze for the last 12 hours. It's funny - you'd think, with this being the 3rd time that I've been told that my kid has cancer, that I'd be used to this by now. Nope. Doesn't get easier the second or third time.

I keep thinking: what did I do? What did I do to deserve this? How was I such a terrible person, that I deserve to have my beautiful, smart, charming son go through this hell?

The next person that tells me that "G-d only gives us what we can handle," is going to get punched. Bullsh&t. I can't handle this. My wife can't handle this. I'm sitting in an empty house by myself with ten gallons of paint; I'm not in a position to handle this. I've been away from my family for two weeks; there's no WAY to handle this at 360 miles apart.

I'm dizzy, headachy, exhausted, wired, in desperate need of sleep, but knowing that there isn't a chance in hell that I'm going to GET to sleep tonight. I'm starving, but I have no desire to eat. I want to keep busy, but I don't want to do anything. I would really like to drink a lot of Jack Daniels right now, or to take some of the oxycodon that I have left over from my surgery in April, but I won't do either. I know that I've got an addictive personality, and the last thing that The Boy needs is a strung-out father.

Tuesday is going to be the day. I'm going to get done whatever I get done this weekend, and whatever is left over will be left over. My brother has graciously offered to pay for professional help in finishing the house, which I appreciate greatly. I don't think that there will be much left over to do: get rid of (donate / sell / throw away) some shelves, the crib & toddler bed, and a couple of items like that; polish the hardwood floors; remediate the bathroom walls upstairs; fix the caulking in the bathtub (should be under warranty with Bathfitters); and clean the bathroom downstairs. Honestly, it's not that much.

I want to be with my son. I want to be around him, to see him running around, and climbing around, and being a two-year old before the next round of surgeries and chemotherapies and radiations and whatever they're going to do to end his childhood.

Timetable is moved up...

The scan revealed new growth, on The Boy's liver. While there is a chance that it could be something like a walled infection, we are not particularly hopeful about that. It looks like the cancer has spread.

Needless to say, new tumor growth during relapse treatment is a really, really bad thing. I'm loading a truck on Tuesday and leaving, two weeks earlier than expected. Whatever isn't done on the house, will get done by a professional or not at all. I don't care.

I want to spend as much time with my son as I can, before...

Well.

Just, before.

You'd think I'd learn...

...but no, I haven't. Three cups of coffee over dinner, after a 90 minute nap, mean that Musical Daddy isn't going to fall asleep any time soon. It didn't help that the movie "Taken" really... well, took my attention tonight. Nice action flick - a retired spy daddy goes to rescue his daughter, who was kidnapped by Bad Guys.

I'm also JUST a little concerned about the scan tomorrow. I'm concerned because I'm 360 miles away, I'm tied into a bunch of commitments over the next several weeks that means that I can't run out to P-burgh to visit my family, and I've already heard "we need to talk to you about the results of the scan" from the doctors once in my life. Well, five times, counting my mom (twice), dad, mother-in-law, and son. There is never going to be a visit to the doctor, a tummy ache, a sore throat, ANYTHING, that The Boy gets that isn't going to have my wife and I exchanging meaningful glances. I mean, I'm sure that we'll start to worry less as the years go past, but some part of us is always going to worry.

I'm concerned because The Boy is home tonight, hooked up to an IV unit. He is still learning Grandma's house, and I'm nervous thinking about him with an IV bag, waking up in the middle of the night and trying to go wandering while forgetting that he's attached. In the hospital, he's very cognizant of his hookups; last time, at our old house, he was very aware of his IV. Strange places do strange things to children. If I was there, I'd probably be sleeping with him right now, which would alleviate much of that worry.

I'm concerned because we still don't know the full extent of the side effects from the chemo. What parts of his body are going to be affected that, hitherto, we haven't discovered? When is he going to show complications due to the radiation treatment? Is he going to develop leukemia, like the potential side effects of the cytoxin indicate? If so, when? What about other issues, to the other parts of the blood flow system?

I'm concerned because he has to take IV contrast. He's 2. He's truly amazing when it comes to taking medicines, for sure; but oral contrast is not fun at all. Will he keep it down? Will he puke it up? How many times?

I'm concerned because I'm waiting for the other shoe to drop. Is this going to be the scan that tells me that I'm going to lose my son? Or, is this the scan that says that we have a reprieve? Cancer, after all, is never really cured... just "in remission." Or, "NED" - No Evidence of Disease.

Doesn't mean the disease isn't there. Just that they can't find it.

Does that make you feel better about it?

Tuesday, December 8, 2009

Scans tomorrow....

...and I'm stuck here. Lucky me.

"Scanxiety:" the anxiousness that sets in prior to (normally scheduled) scans of cancer patients.

We're at the end of the 2nd Maintenance phase, which means it's time for scans again. I'm not happy about it, as I'm stuck 360 miles east of my family. Still, we're cautiously hopeful.

Prayers help.

Sunday, December 6, 2009

Runs in the family

The Boy's preferred mode of sleeping:


He gets that from me. I'm a belly sleeper. My wife isn't, due to Monty Python-esque "Huge Tracts of Land." Now, we put Younger Bro down on his back like good, scared-of-SIDS parents. He has learned to flip himself right over to his preferred sleeping position:


Just like The Boy, on his face, legs bunched underneath him, (not-so-)little butt in the air.

Wish I was there to see it.

- Posted using BlogPress from my iPhone

Friday, December 4, 2009

Home from chemo!

Okay, take 2. Blogpress doesn't autosave, and The Wife called to let me know that they're on their way home.

The Boy with the music therapist:


The Boy with some baseball cards:


The Boy, Younger Bro & The Wife. He's in his baby scrubs:


More pics of Doctor The Boy: