Sunday, February 28, 2010
We've had good counts for a week, and we have not had major snowstorms preventing us from doing stuff. And yet, I feel a lot of pressure today to make sure he has a good day.
I understand that it's more for me than for him. He's quite content to stay home, watch a couple of movies, and spend lots of time spreading toys around the house, tackling various adults, tormenting his brother (or being tormented by), and trying to con candy out of unsuspecting adults. And yet, it's not enough for us.
Right now, The Boy is out with Grandma and Mommy at the Aleph-Bet Store (the Jewish Store). They're finding some fun toys, treats, and games for him. This partially celebrates the Jewish holiday of Purim and gives us some extra stuff with which to teach the aleph-bet letters to him.
(Hey, my kid might be a Reform Jew by necessity, but I'll be damned if he's going to be anything less than an extremely-well-educated Jew. If I have anything to say about it, he'll know the language, the stories, the songs, and the prayers. I don't want ANYONE to say that his non-Jewish father was anything less than supportive and helpful in his religious education.)
Later, we're going over to the JCC for the Purim Carnival. It's meant for bigger kids, but we'll attend the Megillah reading and watch the other kids play on the big-kid toys. It's important for him to see all that stuff and to see other kids socializing while his counts are good. If he wants to try something age-appropriate, he can; I don't think there's going to be much, as the toddler Purim stuff was Thursday.
Maybe the three of us will go out to dinner tonight; or, the four, depending on Younger Bro's mood. We want to have a nice day, before the hospital stuff starts.
Saturday, February 27, 2010
Younger Bro, who is now a week shy of 8 months old, is showing quite a few firsts. Yesterday, he pushed himself from lying to sitting for the first time. He did it once in his crib, and I think it scared him enough to start crying! He did it a couple of other times during the day as well. He also used the sheet on the mattress on the floor of his room to pull himself on top of the mattress; that was a few days ago. This morning, he clapped - intentionally - for Mommy, for the first time! Clapping babies are very cute. In addition, when we went out to breakfast, he drank through a straw for the first time this morning. He wasn't able to do it consistently, but he did it a few times.
(It's easy to think that, when a baby does something once, they can do it at will. It takes them a few days or weeks to make a skill intentional! They do forget what they did, frequently. It wouldn't surprise me if he didn't push himself to sitting for a few more days.)
His second tooth is in and the same size as the first tooth. That's new. It took that tooth quite a while to break through. He's also doing lots of babbling still, with "Da da da da da" being his favorite (as it should be).
The Boy, meanwhile, has been rapidly developing his sense of humor and his boy-ness. "Tackle Daddy!", "Tackle Mommy!", and "Tackle Grandma!" are his favorite games to play. He only does the full-on, full-body dive onto me, though, mostly because I think it's hysterically funny when he does. He'll do a little bit of playing with YB, although he's very, very aware of the baby's fragility. YB is not aware of a baby's fragility, as on Thursday, he had two great takedowns of The Boy during crazy baby time.
The Boy also does this funny little thing where he runs into you, says, "Oh!," laughs a little bit, then says, "I'm sorry!" That's actually kind of sophisticated; it's a little comedy routine that he developed, which is not necessarily age-appropriate. We know that he uses a fork well; what's funny is how he's been over the past week or so. He picks up food with one hand, puts it on the fork tines, then eats it with the fork. Not quite what we had in mind, but perfectly age-appropriate. He's also very picky about which dish he wants to use for which meal; he knows what bowls and what plates he has, and he only wants specific plates for specific foods.
He's got an "Elmo Live!" doll that we finally unwrapped. Of course, The Boy isn't particularly interested in hearing Elmo tell stories and tell jokes. Instead, he's knocking Elmo over. Elmo says, "Uh-oh, Elmo fell down! Can you help Elmo up, please?" When he straightens Elmo up, the doll says, "Thank you! You're Elmo's best friend!" Then, The Boy knocks him down again. Repeat ad nauseum.
The Boy has also discovered a love of climbing: over and under stuff. He likes trying to climb on top of the coffee tables in the house, and he climbs onto the couch to look out the windows and behind the couches and things. He also likes climbing under tables, particularly the coffee table in the living / play room and in the dining room! It's cute, except when he's climbing on top of the glass table, so that he can stand on the glass. Sigh.
He's said, "_______, where are you?" for a little while. This week, he's also found it amusing to ask for objects. "(Letter A toy), where are you?" I am reasonably sure that he doesn't think they'll answer or come out, but I know he thinks it's kind of funny.
His reading of the Hebrew letters is getting scary-good, scary-quickly. I guess we've been focusing on it for the past couple of weeks, but he's picking things up quite quickly. The Wife just told me that he was reading something of Aunt W's the correct way - right to left instead of the customary English way of left to right that we've been teaching him. I have no idea how he figured that out.
I think that's enough for the moment. Monday starts chemo #17.
Friday, February 26, 2010
We've had quite a good week, here at Casa de Musical. The Boy's counts came back quite good, as I relayed in my last blog entry, and we've taken full advantage of that. Mommy stayed home sick on Tuesday, which was good because of the horrendous night for the rest of us. Trying to make it through the day with two children FAR more awake than the three adults caring for them and for each other... let's just say that it wasn't the most parentally productive day.
However, we did have The Boy's speech evaluation at the Children's Institute here in Pittsburgh. This was an exciting time, because The Boy and I got to meet all of Grandma's friends. She works at the Children's Institute, and we met lots of her coworkers and friends as well as her student, J. The speech therapist was very nice and very competent, and she performed a near-miracle: she got The Boy to talk, talk, talk! Matter of fact, he wouldn't shut up the entire time we were with her! (Grandma later said that she was telepathically sending him the message of "Zip it, or you won't qualify!") The therapist said that, indeed, The Boy didn't qualify for speech therapy. She noted that he is quite intelligent and quite aware, with a rather large vocabulary and understanding. In addition, he has perfectly age-appropriate command of the sounds of the English language - R's and L's and stuff like that.
We're worried about the potential for more hearing loss, and about the potential for the hearing loss to affect his speech. Higher frequency hearing loss frequently can cause some speech impediments, particularly in S's and Sh's and Ch's, as you can hear when you listen to a deaf person speak. The therapist said that she heard no delay or retardation of those sounds' development, so there wasn't anything to accomplish via therapy. We'd be quite happy with some supervised practice, but that's not the most productive use of everybody's time. Okay.
After the evaluation, we had lunch in the cafeteria (and more opportunity for Grandma to show off a handsome, well-dressed, charming young boy). The Boy polished off an entire "Big Grab" bag of Doritos as well as some strawberry milk. The rest of the day went by uneventfully, with just a lot of tackling ("Tackle Daddy!") happening in the house.
Wednesday, neither boy felt particularly good, so we didn't get out of the house very much. The boys and I have gotten in the habit of playing together in their room, which is nice. I put some music on the stereo, and we play games together. Well, we play in the same room with each other. Younger Bro typically is chewing on some foam letters or numbers, or trying to move around the room to get something else. The Boy climbs on the beds (there's a trundle bed in the room), plays with the books on the bookshelves, or with toys on the train table. It's quite fun, and it makes nice bonding time for the 3 of us. The Boy even occasionally will play with YB, which makes me really happy!
YB, by the way, has been truckin' along quite nicely. He pulled himself to a sitting position in the crib this morning, in between nursing at 6:00 and Daddy coming to rescue a screaming baby at 6:20. He also pulled himself to standing using one of the toy tables this morning, as well as crawled three steps forwards to try to get this computer on which I'm typing. He's quite near becoming mobile, and he's quite near being able to pull himself up at will! I'm excited for that, because I think he's going to be an interesting kid.
Thursday, the boys and I had a nice afternoon. We took a ride to CostCo and bought some groceries, then went to the comic book store and to drop some checks off at Cousin Ben's office (the dentist). They, in particular, were quite happy to see The Boy. They had seen lots of pictures and heard lots of stories, but hadn't met him yet. At CostCo, the boys were quite cute, playing with each other in the cart until YB got fussy and needed to be carried. Thursday night, the boys, Mommy, and I went to a Purim special hosted by the young children's people at the JCC. It was cute, even if The Boy is still not a social creature.
More on that later. The Boy needs help playing with couch cushions.
Tuesday, February 23, 2010
Anyway, I got home around 10:15, chatted with Grandpa for a few minutes, then went upstairs to assess the sleeping situation. The Boy was watching the Aleph-Bet Telethon episode of Sholom Sesame (Israel's Sesame Street, from 1991) with Mommy, and Grandma was in her own room (alone, for once). I did my nighttime stuff, and The Boy and I watched some Barney before he asked for "Homer, please!" He fell asleep five minutes into the episode; I finished it, and turned the light off. I fell asleep around 11:30.
I woke up at 12:15, itchy as all heck, for no apparent reason. The Boy was snuggled up in a cute little ball, and he was HOT. He was resting uncomfortably, also. I took his temperature (which he didn't like at all), and it was 100.4. Oh, crap. What should we do? Making a long story short, we did nothing. He was his normal self all night, and he ate a full dinner and drank juice and water all night without anything weird happening. Since I didn't want to pack everything for a 2-4 stint at the Hotel Children's, I decided to wait, try to fall asleep, and wake up in an hour or two and retake his temperature.
Long story short, no one in the house slept. The Boy was restless and grumpy until long after Grandma came and took him (around 3:00). Younger Bro woke up at 1:00 (just to make things easier) and stayed awake. The Wife was trying to help me control the damage, and she only made herself sicker than she was - who knows how to call a substitute teacher for a substitute teacher? They fell asleep around 3:45 or so. The Boy and Grandma finally fell asleep around 4:00 in front of Tubby the Tuba downstairs. I took a shower at 3:30 to try to wash off whatever was itchy and fell asleep between 4:30 and 5:00. Ook.
(For me, ironically, I think that the Benedryl I took before bed had a bad reaction with one of my other medications, and the normal sedative effect became a stimulant effect instead. It's been known to happen. This is what happens when I don't break my medications up better.)
Today should be fun. Can't wait.
Monday, February 22, 2010
Of course, here's where the "where's the other shoe?" comes in. We had severely reduced chemo doses last time - 50% cytoxin, 40% VP-16. This is about as low as the doses can go before, as the doctor put it, "We're annoying the cancer instead of killing it." Does this mean that this is the does that he should get, and will it be enough of a dose? Or, does this mean that his substantially improved living situation has made enough of a difference that we'll continue chemo indefinitely? I'm eager to talk with Dr. Graves. He's going to be talking with "people" about the situation and get back to us. The next two rounds of chemo are carboplatin and etoposide (VP-16), which are incredibly nephrotoxic. Do we give him that chemo, and at what doses?
Either way, we'll enjoy the good counts for as long as they last. Tomorrow morning, we have a speech therapy evaluation at 10:30 for The Boy. After that, maybe we'll head over to the mall for lunch and some playtime. Science center this weekend, maybe.
Younger Bro, meanwhile, is sick. Bronchilitis - not bronchitis - is the diagnosis. Basically, he's really, really stuffed up. We went to the doctor's office today, after Mary Fran - the nurse who comes to the house to do The Boy's counts - suggested that we might want to see the doctor. We have to nose suction him every few hours, and if he gets dehydrated or if he gets amazingly tired from just breathing, then we are supposed to take him to the emergency room. Sigh. We're not particularly concerned, but it requires some attention. I brought him home from the doctor's office and he chugged a full 3.5 ounces of milk in about a minute and a half before a nice nap. The Wife is sick, meanwhile, and The Boy is coming down with whatever YB has. I think I've had it over the weekend, but I've managed to medicate myself with enough antihistamines to counteract this particular cold. Thank you, industrial strength drying agents!
Sunday, February 21, 2010
Saturday, February 20, 2010
Anyone have any suggestions about this? Here's what we're not willing to do right now: let him "cry it out." Not so good, when we've just gotten his blood pressure under control and don't want to show him more stress than we can avoid. We went through a time of putting the gate across the door and leaving him to scream in his bedroom until he went to sleep; we're not willing or able to subject the entire household to that right now.
I know that this is just a phase, and he'll work his way out of it soon-ish. It's just hard on everyone, especially The Boy. He's sleeping far, far too little at night and having unsatisfying naps during the day. It's really hard, especially when Younger Bro requires attention but The Boy is asleep. I go to take care of Younger Bro, but The Boy wakes up poorly and needs Daddy's shoulder on which to fall asleep.
Help would be appreciated.
Thursday, February 18, 2010
Starting bid: $0.99
Buy now: $19.99
Shipping cost: $14.99 via UPS
Auction ends Sunday, February 21, at 23:12 EST.
Of course, this is a joke. Everybody knows eBay doesn't allow you to sell children.
Interesting how I've matured as a parent: post-nap, both kids were hysterical. YB needed a non-poopy diaper, milk, and a meal. The Boy was still needing sleep but unwilling to nap without me. Loud, loud crying.
So, I changed YB, carried both boys to the kitchen, tried to give a bottle while holding both boys on my lap. No good.
Put YB in his high chair, TB lay flat on the floor in full fit mode. While talking reasonably and calmly to both boys, I nuked some chicken and cut up a half avocado. When I put some in The Boy's place, the lure of a favorite food brought him back to Earth. I didn't force it, just waited him out.
Before I knew it, they had powered through two chicken legs and a breast, the entire half-avocado, and a banana. All was well with the world.
Until I needed to clean up. Sigh. Such is life. Still, I'm kind of enjoying the noisy, messy, chaotic pace of my day. While it's a lot of poopy diapers, there's a lot of baby tackles, giggling, and banging.
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Younger Bro is awake and crying a bit - every minute or two, he complains that he's stuck in his crib. The Boy is asleep next to me. If I go get YB, The Boy will wake up mad mad mad. If I don't, YB will get exponentially madder.
Sigh. We've got to get this kid so that he'll stay asleep when we get up from the bed. Any suggestions?
- Posted using BlogPress from my iPhone
Location:Reynolds St,Pittsburgh,United States
Wednesday, February 17, 2010
Sigh. That's after a full 2.5 minutes of navigating the recorded messages. On the good news front, I actually got through to somebody who told me that our medical card is on the way; just waiting for the whole food stamp thing, which requires our case worker's approval. Sigh times two.
On the The Boy front, we had a nice day. Mommy was home from school because of (surprise surprise!) more snow, so it was a nice, relaxing day. I took The Boy out to the comic book store, which was lots of fun - he enjoyed looking around the store, which was the first time in a while that he actually wanted to look around without being carried ("Daddy carry you!" he says).
Boring day. Lots of time on the phone. Cute boys.
Tuesday, February 16, 2010
The house stuff, to the best of my knowledge, is done done done. We're set to close before the 22nd (when the buyers' mortgage guarantee runs out). The walkthrough was supposed to be today, and I haven't heard anything about it. The only things that I might be expecting are regarding a couple of tables in a storage area and a big green garbage can (that had been our recycling can). Either is easily taken care of by people around us. The important stuff is all done and cleared.
Our taxes for 2009 are done and submitted. I claimed The Boy as a "disabled dependent," considering that one of us cannot work in order to provide proper care, and the fact that we spent around four months total in the hospital last year, and that his condition has been 20 months and counting. That helped. It was with a certain malicious glee that I typed our hospital bill numbers and copays and medicine bills into TurboTax.
Our professional stuff is, for all intents and purposes, complete. The only thing that we both have to do is retake the Music Praxis test on March 13. Meh. I have to review some of the music history crap and remind myself what the difference between a German 6th chord and an Italian German 6th chord is. Don't care. I'll be fine. On the general skills Praxis, which I need for my math certification, I got a 188 out of 190 in the math and writing sections, and a 185 on the reading section. That's disappointing, considering my perfect score on the math skills Praxis. Whatever. Everything else is done. I don't think we'll see the actual license itself until October or November, but we'll see.
The organization of the house is, for all intents and purposes, done. We still have to find a better place for all of the musical instruments, but we can actually do that now. As a matter of fact, I'm probably going to do that tonight. I'll leave a few up here for The Boy to play, and The Wife's and my main instruments, but the rest are going into cold storage. Then, the computer can go in that back corner, and I don't have to worry about Younger Bro munching on iPod power cables while dismantling his toys.
The Wife is still working her substitute music job. She enjoys it more than she lets on; while it is exhausting, it's non-medically-related exhausting, which is good for her spirit. She's not a homebody (I am), and being cooped up with two children by herself for HUGE stretches of time really hurt her spirit. I'm having a much easier time of things, because I have so much help from Grandma and from an assorted cast of saints that regularly come by. Plus, we're in a (knock on wood) better health time of The Boy, and that helps. And, plus, neither of us is getting slammed by soulless, shortsighted supervisors and high school band teachers.
The boys are doing well. Younger Bro is working on pulling himself to standing; he can't do it yet, but it surely isn't for lack of trying. He's a big kid, almost as heavy as The Boy. That might make it a bit harder for him to actually pull himself up; I'm sure that it was a lot easier for The Boy to pull 18 pounds to standing rather than Younger Bro's 22 or 23 pounds (guesstimate on his weight). He loves eating, and he loves eating chicken and lamb (Grandma's favorite).
The Boy is - well - two years old and feeling it. Today was a very rebellious day for him - throwing things around and banging on things that he isn't supposed to bang or throw. Resisting mealtimes, naptimes. I think he's not feeling particularly well due to the c diff infection and is taking it out on the rest of us. Whatever. I'm not going to blow my cool because he tosses some books or a tv remote.
Next big task: public assistance. I need to get my butt on the welfare dole in a hurry, as evidenced by the $183 bill for three of my five prescription medications. The other two meds are the expensive ones... and I haven't seen a pulmonologist since October. Our caseworker, Mr. Irons, has done little except for lose applications and grudgingly fill out the application that was hand-delivered to him, but not actually submit anything or get us the support that we desperately need despite eight weeks of trying. I'm going to try to complain to the state capital and see what's happening.
Sunday, February 14, 2010
The Boy had a fairly nice weekend. He got home from the hospital and took his c diff medication well. Tonight, he did a lot of running around and "tackle daddy, okay!" He had been feeling warm and had a bit of a temperature, but we're not worried too much.
It'll be a slow week. Because of his c diff, we can't really take advantge of the 2 or 3 days of good counts to do anything, although we might go to Costco tomorrow to take the Wii back.
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Location:Reynolds St,Pittsburgh,United States
Saturday, February 13, 2010
I haven't followed hockey for a number of years, mostly because being a rabid baseball fan is a 365 day a year job, these days. One thing that is causing me to rethink my position is the amount of charity work that the hockey players do in town. I've heard about more Pittsburgh Penguins visiting Children's than the other two big teams in town, by a large factor.
(Granted, several Pittsburgh Pirates might have come to visit but not been recognized. It's a shame, but I'm hoping that I can bring some Yankees luck to Pittsburgh and get the Pirates moving again, at least to a .500 club.)
On Thursday, Penguins defenseman Jay McKee came to visit the oncology ward, and he stopped in the playroom and spent some time with The Boy. He did some coloring with The Boy, and he wrote his name while The Boy pointed out the letters. I'm really cool with that, and Mr. McKee has made a fan out of me.
Now, to find a pint-sized jersey and put a "74" on it...
Friday, February 12, 2010
What a relief, NOT having to go back next week for the closing. What a relief, to have that off our chests - assuming everything goes through! Saving money on house bills, homeowners insurance, taxes... and, knowing that we can use this official closing as the end of a streak of rotten luck and the start of a turnaround.
Younger Bro is with us. We had Babysitters lined up, but they came down with a stomach flu, so we are probably going to bring him to the wedding tomorrow. Sigh. Not what we wanted to do, but at least he's a nice boy. We could have left him at home, but Grandma is already staying at the hospital with The Boy, making it more difficult.
And, The Boy was diagnosed with c diff again today. Sigh. That's frustrating because it has come out of nowhere - he's been pooping normal-type poo all week except for Monday. He hasn't complained about belly issues, but, hindsight being 20-20, there were a couple of things that we could have seen: some grouchiness, some unusual gas. Need more research on C diff.
They are apparently still going to send him home tomorrow, with oral antibiotic. We're going to need to keep the boys apart for a while, as well as keep the gloved diaper changes going. Still, it's better than the automatic 10-day stay that we had at the other place.
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Wednesday, February 10, 2010
So, after last night's late-night movie session (which worked through Toy Story 1 and most of Toy Story 2 before he finally faded at a little after woot o'clock), The Boy slept until almost 10 o'clock. He ate a light breakfast; a decrease in appetite is to be expected at this point in the chemo session. It also didn't help that breakfast was delivered at 8 o'clock and sat for 2 hours. Usually, I time it better. Cie la vie.
Physical therapy came at around 10:40. The Boy was not excited to see her. I wish that we could cultivate a relationship with one therapist, but that's hard to do in a department setting. The Boy walked us to the oncology playroom, and the three of us (therapist, Boy, and Musical Daddy) played some games and played with some toys. This playroom is not necessarily set up to be a physical therapy type place, but we made do because The Boy is comfortable there.
THe therapist left, and we played some more until he pooped. We went back, changed his diaper, and played in the room. We walked over to the couch, and he climbed up onto the couch, exploring the toys and puzzles stored there. The couch is pressed up against the window, so we spent some time looking out the window and playing with the drinks kept there. We played a round of "Daddy, Tackle Me!" until he started getting tired and grumpy. A rest to watch some Sesame Street, then a quick visit to the playroom before another poopy diaper. Back to the room, some more Sesame Street, and a nap. The renal doctor came in at the end of his nap.
After she left, I did some of the new exercises that I learned about from a trainer named Craig Ballantine. He wrote an article some time ago about bodyweight workouts that require no or minimal equipment and can be 10 minutes long; I saved the article on iPhone to use when inpatient. Considering that the workouts take closer to 25 minutes because I have to rest because I have the current physical conditioning of a little girly-man, I think they are worthwhile. At the least, it gets me MOVING.
The hardest thing about hospital time is the complete and utter lack of physical motion. Even chasing The Boy around is slow motion. Most of the day is spent sitting in bed with him, or walking SLOWLY behind him in the playroom or something. I can handle (mostly) the confined space. The motion thing is hard. So, having a brief exercise routine that gets the blood flowing is only a good thing. Maybe I get a pressure pullup bar?
He woke up as I started exercising and was brutally disappointed when I wasn't playing "Daddy tackle me!" We compromised, and he served as back weight for my last set of pushups. Then, dinner, tv, playroom, a few laps of the floor pushing a small plastic grocery cart, then settle in the room for webchat with Mum and Grandma before bedtime.
The only frustrating thing about this trip is the weather. After last weekend's 2 feet of snow got dumped on us, we have had another 8-10 inches today. This has made it exceptionally difficult to get around town, and as such I haven't been home since Monday morning. It's impossible for visitors to come. I also haven't seen my wife since Tuesday morning, and I haven't seen Younger Bro since Sunday night. I love The Boy, but I miss my other son, and I miss my wife.
We're supposed to get more snow tomorrow and Friday. Looks like we might not be heading to the wedding in New Jersey this weekend - at least, not without sled dogs.
Anyway, she woke me up when she knocked on the door, and we proceeded to have a conversation about The Boy. In a nutshell, she hadn't read his case history, just the recent charts. His creatinine levels were back to 0.5 today, which is The Boy's normal levels. This is lower than the 0.7 he had on Monday. Apparently, the GFR is calculated using some form of the creatinine levels, and if the GFR was recalculated using the current creatinine levels, the GFR reveals itself to be close enough to the 58 level he had last month. The GFR test is not an accurate test; gut instinct and an understanding of statistics and statistical analysis tells me that the GFR is best used to judge trends in performance rather than latching onto the number as an absolute.
Side note: Lenny Kravitz is cool. I mean, too cool for words. I picked up a Best Of on Amazon's mp3 store last month, and I'm just getting around to listening to it. Great album, great artist. Very James Brown-like in its study of groove and the rhythmic pocket with only a minor emphasis on lyric and melody. Good stuff.
Continuing, I learned that the creatinine levels can be affected by dehydration or fasting, such as a 2.5 year old that had only VERY recently had breakfast and hadn't drank anything of substance that day because his daddy pulled him out of bed at 5:30AM to take a trip to the hospital. So, her opinion, based on that data, is that the creatinine level spiked due to those other factors, causing the GFR to nosedive, but a 0.5 creatinine level on tomorrow's blood work should confirm steady kidney function.
Side note 2: this kind of confirms our previous nephrologist's reliance on creatinine levels as a more accurate assessment of kidney function than our oncologist's reliance on the GFR. Not that he uses it as anything other than an indicator, but in his experience with Wilms Tumors, a sudden, precipitous drop in GFR is a bad thing. It looks like medicine, and cancer, are tremendously tricky things, but we knew that.
Continuing, if you're still following me, the nephrologist and I discussed The Boy's treatments. Bottom line, she hadn't studied his case history, so little of what she said was worth repeating until she and I have a followup conversation tomorrow after she does her homework. She doesn't believe that a transplant is imminent, and the renal team, upon further consideration of the creatinine level change, sees no reason that treatment should be discontinued. We also learned that the transplant will not take place until The Boy is a minimum of one year off treatment and NED (No Evidence of Disease). This means that, if we have to stop treatment because of renal issues, we're looking at a year or so of dialysis. Also, this means that we're not going to need to test everyone.
Side note 3: I find it interesting that, when we're at home, I can't get out of bed without The Boy waking up and following me around. At the hospital, it usually isn't a problem, as evidenced by the fact that I'm typing this from a chair. Weird.
Adding this information to the gestalt, we're not out of the woods yet. The onc team has to consider a multitude of factors: nephrology is an important factor, but they aren't the only factor. We, and they, are still concerned with The Boy's lack of ability to regenerate platelets and red cells in between chemo treatments, even at reduced doses of chemo. Getting the feel from the various conversations, The Boy's inability to heal combined with a sudden drop in kidney function would likely have resulted in a near-immediate cessation of chemotherapy, possibly as soon as Friday night's chemo dose. With this new information, we will, in all probability, be continuing chemo through the end of this cycle, which lasts until chemo 18. At that point, he'll be reevaluated and scanned (I'd assume), and we might continue on with another cycle or two. I can't imagine any more than that. Mind you, this is ALL conjecture, because I don't know if our oncology team has come to any conclusions based on the new information from nephrology, and I don't know what will happen when the nephrologist with whom we spoke actually reads The Boy's file and consults with the attending that usually deals with The Boy.
Whew. Lots of big words in this blog entry, and some pretty darn deep medical concepts. If your mind is a little confused about the details, don't fret; mine is, and I've actually been talking to everybody.
How do I feel about this? Darn good question. On one hand, stopping chemo would be nice. it would likely result is LESS hearing damage than we're expecting, and The Boy might actually be able to start having something approximating a normal life. Lack of chemo might mean less time in the hospital for a little while, and that's always good. Besides, I'd like to see what his hair, non-minoxidil version, looks like. His kidney should start to heal and to take a more normalized function, and we should be able to significantly reduce the amount of medication that he's taking. And, no chemo = no neupogen, which is a GREAT thing.
On the other hand, they have 30 chemo sessions for a reason. I'm fairly certain (though I haven't read the original study) that they didn't pick that number out of a hat. I'm concerned that missing out on 12 to 14 chemo sessions is NOT going to be good for his long-term prognoses of staying NED. He's relapsed once already, which is why he's on this protocol, and dodging the bullet in January shouldn't push us into being complacent with early, non-earned thoughts of remission.
Gripping hand, we have to trust our oncology team, that they are going to do as much chemo as they can do without exposing him to so many side effects and other issues. We have to trust that they are on top of the situation, knowledgeable about all foreseeable factors, and able to work with us to make decisions that will give The Boy the best chance to beat this and live a nice, long, cancer-free existence.
Side note 4: This hospital trip, I'm listening to a lot of music form my "unheard music" playlist, which had grown to about 120 songs before this week. I find it entertaining that there was still about 6-10 holiday songs that I hadn't listened it; "O Holy Night" is shocking when it comes on your iPod in February, even when you're expecting it.
Tuesday, February 9, 2010
That's typical of hospitals, though - kind of like the cable company, they'll visit at some point between 8am Tuesday and 5pm Thursday. Sigh.
We spent a couple of hours in the playroom this morning, and we had a nice nap early afternoon. Mommy came by and brought a yummy lunch for us, and she had a nice time playing with The Boy. He was so excited to see her!!
We had some more nice time in the playroom in the afternoon, until he got very tired. Grandma and Grandpa showed up right then, and The Boy snuggled to sleep with Grandma. Maybe a midnight playroom visit? I hope I can watch Lost, although I'm happy that the tv networks replay the shows online. That's how I watched Heroes and Chuck this week.
All in all, a boring day, health wise. He ate well, played hard, and snuggled well. Cool moments: "Daddy, what you doing?" "Daddy, what you have?"
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Location:31st St,Pittsburgh,United States
Excellent. I want The Boy to have friends like that.
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Location:Penn Ave,Pittsburgh,United States
Monday, February 8, 2010
Once we woke The Boy, we accessed his port. He hasn't been taking it well of late, mostly because of the variety of people doing it. At Barnabas, there really was only a few people that accessed him on a regular basis, so he was used to it. Here, it's someone different each time, and he's flipping out and bucking each time it's done. Not good, and not the same kid that made the YouTube video six months ago.
The blood draws for the GFR went uneventfully. We went to lunch afterwards, and he ate his entire grilled cheese sandwich and half of my pasta salad! We went up to the clinic and waited around for a while.
They called us in, and we chatted with the head nurse (who's preggo) and our doctor for a while. We made counts, and we were escorted over to the floor. We did the whole admissions thing, and The Boy napped for a couple of hours.
So, here's the bad news: the GFR result was bad. Like, down to 34 bad. Like, bad enough that we're going to have a meet and greet with the transplant team.
Don't read me wrong: we are NOT in imminent transplant time, but it's approaching. We knew this was coming, and we knew that it was unlikely that he'd finish treatment because ofthe severity of those treatments. Simply, his body is reaching the point where it simply can't recover from the chemo. So, we try to reduce doses, but we can only do that so much before we aren't fighting potential cancer cells anymore.
We are almost at that point, and we need to be ready for cessation of chemo and the start of transplants. Which means, the next phase of our journey is beginning.
I can't tell you more about the transplant stuff. I am the simple child, who does not ask a question because he does not know what to ask.
Anyway, Mommy walked in at the end of the discussion, and we had dinner. Then spent time playing with paints in the playroom, covering himself thoroughly with paint in the pursuit of his art. Poopy brought us back to the room, where we are watching Tubby the Tuba until Heroes starts.
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Location:Bowery Way,Pittsburgh,United States
The roads were awful. Penn Ave, which is one of the big main streets around here; wasn't really plowed. Plows went over it, but not since early in the snowfall. The road was a solid sheet of ice, raised higher in between tire tracks. Up the big hill on the way to the hospital, my car slowed and stopped, beginning to slide backwards. Fortunately, Liberty was plowed - one of 3 streets that was plowed well, that I saw - and I took a roundabout way to the hospital. The main registration desk was closed, and the emergency room registrar didn't know where to send me. Good thing I did.
Now, we didn't have breakfast. I figured, 6:30 appointment - 6:45 in, 7:00 IV, 7:15 in the cafeteria. Nope. 7:20 in, 20 minutes to root around with a needle, 5 minutes for me to request a new IV team member and tell them about themselves, THEN we went to the cafeteria. Next challenge: because only 2 cooks were on, they weren't taking special orders and only making the breakfast special. Sigh. Waited for a manager, begged for eggcheese for The Boy, got it. He ate half the eggcheese and 1.5 bananas. Whatever - after the trauma and torture he just underwent, I don't care if he wanted a cup of butter to eat.
Back upstairs, a new IV team member found a vein quickly. It's amazing how much easier veins are to find when the kid is fed and juiced, you know? (Had I known the wait would be so long, I would have run to the cafeteria earlier. More fool, I.) The little stinker had proceeded to fall asleep on my shoulder.
He'll stay here until 10:45, when they'll access him and do the first of 3 blood draws. Then, we'll stop upstairs at the hem-onc clinic to find our marching orders, another blood draw, and hopefully admission for chemo 16.
Wish us luck.
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Location:Penn Ave,Pittsburgh,United States
Sunday, February 7, 2010
After a nice breakfast, I spent a couple of hours attempting to dig us out. I did an okay job, considering that they had not yet plowed our street by midnight last night. The way our driveway is constructed (dipping down underneath the house) made it more challenging, as there are only a few places to store snow. This means only one car is leaving the garage for the next week or so. I also have no idea what's going to happen with the two cars in the street. Should be exciting.
The Boy watched me work for a little while, which was cute. We didn't take him outside, as it is probably more scary than fun to take him in almost as much snow as he is tall.
After shovelling, we took a whole house nap and ate a late lunch. We played, then dinner, then lots of playing, then bed. The Boy was playing some of his favorite games: "Sit up, Daddy! Sit up!" He then pulls at your shirt until you "fall" on him. "Aaaaaah!"
He also has been using a popcorn tin as a drum, which is really funny and really loud. The popcorn is mostly gone; he liked the caramel corn best.
We have a couple of challenges in front of us: chemo and gfr tomorrow, digging out of the rest of the house today, a wedding back in New Jersey on Saturday, and an alleged closing on our house a week from Thursday. That, and The Wife got asked back to sub for this music teacher for another week (mixed blessing). Won't be boring, that's for sure.
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Friday, February 5, 2010
Anyway, Younger Bro stayed asleep until around 8:00, allowing me to feed The Boy breakfast (egg and cheese today, as opposed to noodles and dip yesterday) and then clean the dishes. We snuggled for a bit, also, which was nice! Younger Bro eventually got up and took a bottle over the next hour and a half. He was grumpy and out-of-sorts, not wanting to play or to be walked around or to eat. He settled down for a nap around 10 o'clock. I got The Boy settled, and then I packed the diaper bag with yesterday's essentials (plus an extra snack for me), dressed and loaded boys into the car, and went to the local JCC.
They have a very cute Sabbath "service" for the small children every Friday. They sing songs, dance around, and talk about what the sabbath actually means. It's very nice. Grandma joined us at the JCC, which made the boys feel better. At the end, they drink "wine" (apple juice) and eat challah. The Boy, again, didn't join in any of the singing or dancing, but he loved the challah and juice. He was ALMOST playing with some of the kids, but he was still Mr. Shy and was very quiet and passive around the other children. We stayed for a little while afterwards, and he was quite upset when we left. He wanted to play more! We went home and had lunch.
I took Younger Bro to the doctor after lunch and got him his flu shot booster. I am offically the wussiest member of the family, as I'm the only one that screams like a little girl. YB, The Boy, and The Wife all take shots quite well. Not me. 10 seconds after he got the shot, Younger Bro was smiling and flirting with the nurse. I brought the little stinker home, and fell right asleep. The Boy settled in with Grandma, and I went to the gym.
After the gym, I actually got ahold of the county assistance case worker that is "taking care" of our case. He told me that all we needed was birth certificates, and we would then be put into the system! (Yeah, right.) Since everyone in the house was still asleep, I ran them over to the office and sat around until somebody actually went and spoke with him to make sure that the papers were, indeed, in his hands and ready to go. We're still not in the system, which scares the crap out of me because ALL of my medicines run out, like, this weekend. No word on when we're in the system and I can get my medicine renewed; my guess is, the latest will be September. (When The Wife or I get a job.)
We never quite got around to family movie night tonight; maybe tomorrow. Tonight, we played quite a bit, and The Boy had lots of fun tackling Daddy. I also finished my game, "Song Summoner Encore." w00t.
The TV show is "Fringe." The video game, now, is "Reign of Fire." The book is "The Best of Robert E. Howard."
Thursday, February 4, 2010
So, we are going to have much more fun this weekend than we anticipated. We started today, when I took both boys to the Pittsburgh Mills Mall. They have a wonderful play area, with climbing stuff like a park, steps on which to play, and a couple of computers set to Sesame Workshop. The computers didn't work, but the rest was awesome.
The day didn't start out awesomely; Younger Bro broke from patterns and chose not to nap at his normal time. Sigh. Plus, The Boy didnt eat much of anything for breakfast, leaving his appetite and general disposition in question. I decided to chance it anyway.
Packing two babies for a trip is a huge logistic process! Change one, get him dressed with shoes and socks. Chase down and change the other. Pack a snack and juice for each, make sure there are enough diapers and a change of clothes. Hand wipes, sterilizing lotion, two bibs, placemat for YB, change of clothes for each? Check. Load diaper bag in the car, load double stroller, grab one kid and load him, grab the other and load him. 20 minutes after the start of the procedure, we are on the road.
Both boys fell asleep on the way out, so we sat in the car in the parking lot for 20 or 30 minutes while they rested. We went to the playplace, and it was a hit? The Boy had a great time, playing for around an hour. There was a handful of other kids around, which was good. The Boy was watching them and mimicking some things they were doing. He had lots of fun, even if he wasn't physically comfortable doing stuff like climbing the ladder, sliding down the pole, that sort of thing. He'd take occasional breaks to walk around th area and read the letters on the signs.
We had lunch at Panera Bread, which was more difficult than it sounded (try pushing a stroller, carrying two plates and a soda, and chasing after an excited 2-year old. "Cheese sandwich!!!!" after lunch, we went back to the playroom for about 15 minutes, before YB flipped out about being overtired and milk-less.
After we got home, all three of us napped, had dinner, and took Mommy to Target. We again had lots of fun! The Boy ran around and played with everything he could reach. The favorite was the big plastic balls in the big bin. He also liked the movies and books thing.
We finally replaced our iPod for the hospital with a 32GB iPod touch. (It's not an iTouch, people. It's an iPod touch.) it'll hold all of the movies and music for the hospital. Thanks, Cousins Dean & Jen!!!!
The Boy again wore Elmo underpants for a couple of hours without making them wet! w00t!!
Tomorrow, I'm going to take the boys to the sabbath service at the JCC at 11am. It should be lots of fun - they had a good time last week.
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