Mommy left for orchestra practice at 7. Younger Bro went down at 7:30. The Boy and I fell asleep on the chair at 7:40, and I woke at 9:30. It's now 11:30, and I'm trying to get him asleep. The benedryl I took with my nighttime meds is kicking in, but if I get up, he's going to freak.
The Boy's getting blood today. I know how surprising that is to you, Faithful Reader. I mean, he gets blood so rarely - only once or twice per week! I feel very badly for The Wife, who's stuck in the Valerie Center with two babies, one of whom is tethered to an IV pole. Sigh. Hopefully, she got to nap with the boys at some point.
I knew this changeover to Horizon would be a royal pain in the tuckus... considering that referrals are now being lost all over the place. Sigh. Frustrating. Another thing is that, apparently, my wife's school district didn't cut off her insurance in January, like we thought. I guess that's good news, except for the fact that every single doctor's bill filed between January and now will need to be re-filed.
This is why you don't pay any medical bills (outside of co-pays and other reasonable expenses) until the collection agents come knocking at your door. Sigh. Thank G-d I have teacher's health insurance: when bills come in for over $100K (like the month of July, with Younger Bro in the hospital for six days, and The Wife in for four, and The Boy in for, like, 25 days), my stomach does all kinds of interesting flips in the pike position. Thankfully, when all is said and done, we'll only owe a couple of grand - not great, but MUCH better. Money under $100K I'm not authentically concerned about - my wife and I are hard enough workers that we'll find a way to work it off, and I think we'll wind up under that by the end of his treatment. Not by much, but under that.
It was a nice day today, all things considered. I taught well during the school day, had a great marching rehearsal, and a great barbershop chorus rehearsal. I even had a good drive back and forth today, and I got to listen to the Yankees' 9th inning comeback victory. It's a long day, and I'm in the serious need to decompress.
The only problem is, my primary method of decompression these days involves playing with children. I need those The Boy hugs and those Younger Bro hugs. Granted, The Wife's hugs are pretty darn good, but it's different. There's something about hearing "Dah-DEE! Dah-DEE!" when I come up the stairs, and there's something about being met at the front gate by a grinning, excited toddler that is healing to the soul. Younger Bro has started smiling at me on a more regular basis, so I can expect to coax a smile out of him, with a little bit of effort.
He still won't sleep with me, though, and I'm disappointed about that. As The Wife says, Younger Bro really prefers to put himself to sleep by crying by himself. It's so weird, because it goes against every parenting instinct I have. With The Boy, I'd pick him up, snuggle him close, and was guaranteed to put him to sleep relatively quickly. With Younger Bro, if I'm in the room, he won't fall asleep. I'm hoping he'll work that through, because I love holding babies and watch them yawn themselves to sleep. It's satisfying. I have a vague, nagging fear that being forced to put him under those lights for the week after his birth somehow spoiled our connection and our ability to snuggle him to sleep. I know that that's probably overblown, but there you go.
Tomorrow night is my solo night with both boys. I'm looking forward to it. Maybe we'll go for a walk after I get home. We'll see.
The Boy is developing his normal, low white count diaper rash. It's a pretty horrendous -looking thing: little red bleeding spots on the perineum. We have Butt Paste to help the rash heal faster, but nothing works better than good, old-fashioned naked time.
The Boy is kind of indifferent to naked time sometimes. Other times, he'll pull a diaper out of the drawer and chase us with it. The biggest thing is that he can hold his output until a diaper is put on.
That leads us to believe that he's kind of ready for potty training, or at least the start of it. We'd be happy if he'd learn to pee in a cup - it would make all of our lives easier during hospital visits. He won't sit on the potty willingly, however, and we won't force the issue. We have standing bribes of jelly beans for the attempt, however, and Daddy's use of the potty is frequently fun family time for him. Sigh.
Well continue to encourage him to use the potty, without puttin pressure on him to do it. Dr. Rifkin said that milestones like these will take longer due to his treatment schedule, and we can believe it. We're not in a rush, not nearly enough to traumatized the kid any further.
Any suggestions for getting him to sit on the potty? We know that he knows what it's for:
We left the hospital at ten last night. I moved us out by myself, as The Wife was not feeling well. He came home and played until it was time for the midnight diaper change, when he cuddles up with Mommy and fell asleep. It wound up being quite an easy night for The Boy and me, but a difficult one for The Wife, as Younger Bro was up for most of the night.
We were all awake at 7:30, and we ate Rice Chex for breakfast. After some playing, The Wife took the baby to Yom Kippur services. The Boy and I napped until around 1:30. After some snacks, I took the boys for a long walk.
After the walk, we all went to the local Chili's. They have a night every year where they donate all of their profits to St. Jude's cancer research. The boys were in prime form tonight, but the restaurant folks were happy to see a cancer patient. They gave him a shirt and a necklace, and they even comped the meal for us. How awesome is that?
Nice, restful day. Back to the grind tomorrow. Here's a picture of The Boy at dinner, where he ate mostly salad dressing flavored by corn on the cob.
Here I sit, on the hospital bed with The Boy, waiting to be given his last dose of mesna, so that we can go home. I'm really excited about this, even though it means an awkward night of every other hour diaper changes in his new sleeping schedule.
The original plan was to discharge us at 4, and give the last two doses orally at home. The hospital can't dispense that medicine, so we're stuck here. The Wife is at home, suffering the ill effects of mastitis. She was going to come help me pack, but the poor thing is exhausted. Complicating things is the fact that I pulled that muscle in my upper back again, but I'm pretty sure everything will be fine.
The day was uneventful. I got back to the hosptal after watching my band earn a 75 score last night at around 11. The Wife came back at around 8:30 this morning, and I had a nice singing day. In the afternoon, The Boy alternated between napping and playing, and he's just settling down now. I'll finish packing when I'm sure he's settled, and I'll bring stuff downstairs when he's unhooked from the IV.
The Boy has had a relatively easy stay so far, with the exception of the fact that his chemo didn't start until around 9 last night. That's annoying, because the mesna that follows the last chemo will now likely keep us in the hospital until Monday morning or early afternoon. Thankfully, I have no school on Monday, which makes it easier.
The Wife has a fever right now. She thinks she probably has an infection related to nursing - something that can happen as a result of going too long in between nursing on only one side. I stayed home from choir to take care of her, and I'm wondering if I'll be in school tomorrow. Probably, but we have to be cautious. If she's infectious, she can't be around The Boy.
She's now talking to a family that was just diagnosed with a Wilms Tumor also. That's a shame. I hope they have an easier time than we have had.
Not going to choir tonight meant that I didn't get to see The Boy. I miss him. I webchatted with them for a little while tonight and last night, but it's not the same. It's now been two days, and I won't see him until tomorrow night. Sigh.
In the meantime, I had some good quality time with Younger Bro. He's getting to be quite the interesting young man. Here's a picture:
We're being admitted as soon as The Boy finishes getting red blood cells. The folks who are on our caring team - please look for an e-mail tonight (around 7). We're going to need a lot of help from Friday afternoon until Sunday afternoon, in particular!
Today is one of those moderately frustrating days in the life of a cancer parent. The Boy is at the Valerie Center, getting a blood count done. If his platelets are high enough (his white cells already are, but a 69 in platelets on Monday just won't cut it), then they'll admit him and start chemo today. If his platelets are not high enough, they'll likely transfuse him red cells and then send him home. Depending on the number, The Boy will go back tomorrow or Friday or Monday and likely be admitted.
So, Grandma is on standby in Pittsburgh, waiting for the "Go" or "No Go" call. Grandpa is heading to the center at 10 to help out with the transfusion or the move-in, depending. And, as soon as we get word, I'll send word out to our usual helpers for Saturday through Monday help.
Grandma is only going to be in town until Friday, as Sunday night through Monday night is Yom Kippur, and she's hosting 40-ish people at her house for the break-the-fast meal Monday evening. This means that we're on our own for the weekend - not necessarily a big deal, but made into a big deal because Saturday is a football game and marching band competition. This means that I'm at rehearsal at 9:30AM, the football game starts at 1, and our step-off time at the competition is 9:30PM. This means that my day is done - at minimum - at 10:30PM, and could potentially run until around 2AM, depending on whether or not I'm able to leave after our performance.
Factor in normal Sunday mass at 9:15AM until noon (when I can be back at the hospital), and it's a very busy weekend for me. That makes it difficult to be an active participant in The Boy's care, which means that we're going to need a lot of help. If we're admitted today, we'll be going home on Sunday night or Monday morning, which would be fine. I hope we're not admitted on Friday, because then we're looking at a Tuesday night / Wednesday morning release, which is no fun at all for me.
Still, this uncertainty is part of our everyday life now. We're used to it, but it still rankles quite a bit. Worst part of the whole thing? I'm not going to see The Boy from breakfast this morning until Friday night, if he's admitted - I'm going straight home so I can take care of Younger Bro while The Wife goes to orchestra today, then tomorrow head straight from school to marching band to choir practice until 9:30, then school & marching band on Friday, and THEN I can go to the hospital. I hate being away from my son for that length of time.
I know he needs me, but I need him every bit as much.
Younger Bro, in clothes and diaper, weighed in at 16 pounds, 10 ounces today. That's 2 pounds, 6 ounces more than his 2 month checkup on August 28. Even if you subtract for the clothes and (clean) diaper, that's still an awful lot of 2-month old baby.
I love chubby babies... they're so ROLL-Y! He's been nice and happy over the last two days. Yesterday, I had him for a couple of hours over the course of the day, and he was alternating between smiling at me and chewing on my finger. That boy loves him some fingers... he's even doing a good job getting at his fingers and thumb!
That's what my wife calls it, when I'm recovering from a tough week or about to embark on one. I will, consciously or not, kind of cling to The Boy for a little longer than normal. He is so wonderfully good for me and to me. It's the most wonderful ego boost that having a small child gives you: this little person just wants attention, hugs, and approval.
I will NOT be a parent that says, later, "I wish I had hugged my children more." nope. Not me.
Today was a nice day. The Boy and I snuggled for a while. We both napped. I woke earlier than he did, so I read the paper while sitting with him, then did some housework. He got up around 4, and Mommy and The Boy played violin while Younger Bro and I played some fun games together - I rediscovered the "cheeky cheeky chinny chinny" game, and he spent time alternating between smiling at me and chewing on various parts of my hands.
We went to the park, and The Boy befriended a 4.5 year old boy, whom he followed around for a while. That was really nice, particularly when it got him walking across the little bridge. Two weeks ago, he was too terrified to go across it. He eventually got to crawling across, and today walked across it four times, applauding for himself each time. Very cute. Not a great crowd at the park today, but he had a good time anyway.
Tonight was easy for all. Nice dinner, Mommy left with YB to go food shopping. The Boy played nicely and eventually fell asleep in my lap during Boy Therapy time. Maybe I'll take him to Back to School Night tomorrow. It could be fun.
I like Rosh Hoshanah. It's a good holiday. It's not a death-type holiday, it's just a celebration. We left Friday after school and drove the boys down to Harrisburg, to spend the holiday with Aunt M and Uncle B. It was really, really nice down there. We were given the third floor of the house, which consisted of two bedrooms and a bathroom. We arrived a little bit before dinner, enjoyed a great meal, and slept quite well, all things considered. The Wife slept with Younger Bro in one room, where the queen-sized bed was not quite big enough for everybody. I slept with The Boy in a single bed in the other room.
The next morning, Aunt M took The Boy to temple, and I walked with The Wife and Younger Bro a while later. I wasn't there for long, as The Boy indicated, in no uncertain terms, that he wanted out. Considering that he had been so good for the hour or so he was there, I had no problem doing what he asked. Younger Bro stayed for a while; just like Uncle B, his godfather, he seemed to enjoy being at temple. After a late lunch, we hit the road and arrived back home at 7:30 or so. We made a quick stop to Dunkin Donuts for coffee for me, and a longer stop to feed Younger Bro and stretch The Boy's legs.
Today, The Boy napped from around 12:45 until just now - 3:50. We spent the time cleaning and straightening and preparing, as this week is a difficult week. In addition to a likely hospitalization for chemo late this week, I've got Back to School Night on Monday, marching band rehearsals Tuesday through Friday in addition to my night jobs on Tuesday and Thursday, and a game and competition on Saturday, putting me out of babysitting from 9:30AM until around 10PM-ish. Long week.
Fun enough evening tonight. Yet another long day - school to marching band, then The Wife leaves after 30 minutes to go to orchestra practice. Still, since The Boy's counts were good, he spent an hour at marching band with me, which was fun.
I'm fairly sure that he enjoys coming to the rehearsal, and I'm fairly sure that the marching band kids enjoy having him around. He doesn't distract me from doing my job - if I need to go across the field, I just pick him up and carry him. He gets juice during the water breaks, and he REALLY enjoys counting out loud with the band. Actually, I think a couple of the band members were inspired to count because of him - he was counting out loud, and they wanted to help him. The fact that it helps them with their performance is only a positive, I think. Anyway, I hope he's not a distraction. I'm sure I would have heard about it if it is a distraction.
So, The Wife left for orchestra, and I had the two boys. The Boy promptly pooped while he was finishing dinner, so the poopy diaper assembly line started: Younger Bro first, change, spray, put aside. The Boy, change, spray, put aside. Didn't put a diaper on The Boy, as his rash is still pretty nasty. Younger Bro played for a little while and let me do the dishes, and he started fussing a little bit. After about twenty minutes of walking, providing white noise, and the rest, I finally put him in pajamas and let him sit and listen to his lullabies in his bassinet. Whammo - asleep in moments. The Boy then fell asleep in my lap and stayed that way for an hour and a half. I snuck out from underneath him and did some school work - called a drummer buddy of mine, burned a CD, filled out some purchase orders. Shaved, showered, teeth... medicines for The Boy, changed him, then put him down.
The last three nights, he's pooped within 30 minutes of being put in his room. Tonight, he did it again. We're convinced that he's doing it on purpose. No way to prove it, though.
He's now been standing at his gate for an hour and screaming. Dr. Rifkin said to be patient, that it would take him extra long because it takes all kids on treatment extra long. Man, this is a killer, though. I would have been asleep an hour or two ago if it wasn't for this screaming. At some point, I need to start getting more than five hours' sleep.
Today, I go from school, to marching band, to barbershop chorus, with nary a break in between. This means leaving the house at 7:30AM (7AM once jazz band starts, in a couple of weeks) and getting back in at around 10:45PM. Same thing on Thursdays, except I can get home closer to 10:10, and I can stop home in between rehearsals. It's a long day, but I'm doing fun stuff, so it's not bad at all.
The worst part is that I don't see, and thus can't help, The Wife with the boys. That, I don't like, particularly since The Boy and I are so attached right now. In trying to combat that, we had a nice day today. I went home for lunch, which is always fun, even if this week's lunch coincided with physical therapy, so I was more of a distraction than a help.
During marching band, The Wife brought the boys to rehearsal for a few minutes. It was really nice to see them for a little while, and The Boy loved listening to the band count and loved seeing all of the different instruments. He even played on a quint for a note or two! I think the students enjoy having him around, because it's VERY cute when he toddles out yelling "Dah-dee! Dah-dee! Dah-dee!" into the field.
Tomorrow, I'll walk in the door as The Wife is leaving for orchestra. That'll be fun, getting to spend some time with The Boys and trying the new bedtime procedures with them both.
On Thursday, I think I might come home from lunch again, but - then again - I might not. When I come home from school, I'm taking my clothes off downstairs and showering so that I reduce the chance of spreading infection from my school to my home. If I come home from lunch and do NOT do the same, then I'm essentially counteracting that preparation. Sigh. Maybe I wear scrubs on the way into the house in that case? I don't know. There must be a simple solution. Any ideas?
The Boy is currently standing at the gate across his bedroom door, alternating between playing and whining at us. This is the third night that we've done this, and I'm not entirely convinced about this one. Mostly because he's a stubborn little cuss, and he is more than willing to sacrifice himself and his sleep to make his point to me. Sound familiar? I'm the other one in the family that is more than willing to shoot himself in the foot to make a point. Anyway, the first night, he screamed for five of the eight hours he was in his room. The second night (last night), he screamed for four of the nine hours he was in there. So, it's better than it was.
The reason we put the gate up was because, quite simply, he bounced out of his room too quickly and too easily. He'd be in his room for less and less time as the weeks have gone on, culminating in about 15 minutes in his room on Thursday and Friday nights. Whatever. Not a big deal. When he starts to get too mad, we go in to the room, hug him, kiss him, and calm him down. There's a chair in there (with a power cord for iPhone) where we sit until he's completely calmed down and dozing, then we get up and start the merry go round all over again.
Dr. Rifkin says that making these kinds of transitions is very, very difficult for kids in treatment. It's hard making the life altering milestones during chemo: sleeping in his own room, potty training, that sort of thing. We'll see how it goes. She also said that, if it doesn't work, we shouldn;t get too hung up about it. My prediction? Younger Bro will be in his own room earlier and more thoroughly than The Boy will be.
In the other end of things - literally - another demonstration of how stubborn The Boy is, including the reason behind the title of this post: today, he had no diaper on for two full hours and did not go to the bathroom. This was after he had Lasix, the diuretic medication, also. So, this non-potty trained kid can hold it in for two hours even after getting medicine that makes him pee. Pretty amazing, no? Over the weekend, same thing - lots of naked time, so he could get rid of that awful diaper rash. No going to the bathroom. Peeing on the floor would have been an improvement, as my wife said.
The Boy's actually asleep. In his bed. This is a stroke of victory for the forces of good.
I say that because things had finally reached a head in the Musical household over the course of the past week. It was getting difficult or impossible to get both boys to actually fit in our bed without causing some serious difficulties for the two adults involved, particularly the one that was nursing a baby. Efforts to get The Boy to stay in his bed were not going particularly well.
So, Saturday night, The Wife finally got irritated enough to take a drastic measure. She put the gate across his bedroom doorway and threatened me if I got him before a reasonable hour - like, 5 or 6AM.
He responded predictably. He is my son, after all. We put him in his cage - I mean bedroom - at around 10 o'clock. He was in late because he napped from 5 to 7PM. He promptly screamed until 12:30AM, standing in his doorway shaking the gate. At that point, he fell asleep on the floor in front of the gate. At 3:30, he woke up again and started screaming.
At some point, predictably, I went in and got him. I don't know how and why I'm such the soft touch. The Wife knew it and predicted it LONG before we had children. I don't get it - I'm quite the hardass about most things in my life. It must be because my parents did such a thorough job of spoiling me, I feel it's my ability to return the favor with the next generation.
Today, he napped from 1:30 to 4:30PM, when I finally gave him his bicitra and woke him. He lazed about for most of the rest of the day, doing some light playing but nothing too energetic. At 7:30, he started to fall asleep again. I will still say, nothing is more magical than holding your child in your arms and watching them fall asleep. It's beautiful, truly!
So, we put him in the bedroom after the appropriate rituals. And, he screamed. He started screaming at 8:15 and screamed until 10:30. He did take a break around 9:20 and played with some of his toys for a little while before remembering why he was ticked off. Eventually, though, he did fall asleep. The telephone woke me up at 10:50, and I snuck out to take a look.
Lo and behold, miracle of miracles, The Boy is asleep, on his bed. Mostly. His feet are hanging off the end, but his head is on his pillow (almost) and his body is on the bed. Hooray!
Maybe tomorrow night, it'll only be an hour of screaming. All I have to say is, my wife is a miracle worker. I don't know how she does it.
You who read this blog regularly know that I'm not in a great place right now. The Boy's illness, Younger Bro's issues, The Wife's lack of healing and discomfort (not to mention the strain on her, taking care of two children while stuck in the hospital three days per week), my struggles with my barbershop chorus, the start of a new school year (albeit one that seems to be going fabulously well at my middle school job - great, great kids and a wonderful working environment and supportive, caring administration), and my own health issues (this horrid, wracking cough that hasn't gone away for two weeks now, combined with sinus stuffiness that has me dizzy most of the time)...
Let's just say that I've been caught up in my own issues for quite some time now, running from one crisis to another with a "batten down the hatches" attitude.
And, it happened again today. I walked into the church where I work, and I was completely and utterly flattened by my experience there.
For a second time in a week, I was in a place where I bore no responsibility of leadership. I bore nobody's burdens on my shoulders, save my own. I had nothing with which to concern myself, save singing. I didn't have to think about it (other than the normal amount of thought, passion, and energy that I devote to my craft - which is considerable, but it's a different sort of energy than trying to, say, lead 193 middle school band students on a daily basis), I didn't have to plan for it, I didn't have do more than be around friendly, supportive, caring people who wanted to work with me.
I was entirely unprepared for this, as I as on Thursday evening. I caught myself, five or six times, wondering when the other shoe was going to drop - when I was going to get called out, or have something awful happen. It didn't, of course. Not that kind of place, not that kind of time.
It's very relaxing, just being a member of something.
When I was changing The Boy this morning, I noticed a nice, new, pitch-black bruise on his thigh. "Platelet day," I thought. The Wife called an hour ago; yup, I was correct. Platelet day. Not as bad as blood day, but still a full day for her at the hospital.
To make things better, the back door of the minivan didn't close on their way in, and the light ran the battery down. It was probably on all night, come to think of it. So, when they went to go to the grocery store in between getting accessed & getting platelets, they couldn't. Perfect.
So, I'm sitting with The Boy on my lap. He waited up until I got home - he's playing the bedtime manipulation thing, mostly because he's going to win that one right now. (I'm sick. Don't have the energy to hold that line.) He's on my lap, looking at me. I say, "I love you, The Boy. Can you say, I love you Daddy?"
Tonight was my first significant chunk of time with the two boys by myself. I've taken them on walks before, but this was the first time that I actually had both boys to myself for a couple of hours. Not as much fun as I'd like.
So, The Wife leaves for orchestra practice at 6:50. By 7, both children are screaming bloody murder. Younger Bro was the more serious, so I tried to soothe him. The Boy worked his issue out reasonably quickly, when he figured out that I wasn't going to give him Rice Chex (he's already constipated, doesn't need more rice). After 30 minutes of screaming, Younger Bro finally calmed down. The clincher was running the bathwater - the white noise sound calmed him down. I'm happy about that. He took some milk then fell asleep. I put him in his bed.
The Boy was watching Elmo in the bedroom by himself during much of this, just kind of playing with a broom for a while. I changed him, finished his meds, and sat him on my lap to watch some baseball. My colleague from work called, and we chatted for fifteen minutes or so - I avoid work stuff on this blog very strongly, but I find it interesting that he trusts a college senior implicitly, yet needs to explain basic marching band technique to a guy who's been successfully teaching it for a decade now. Sigh.
Anyway, The Boy nodded off during the conversation. I changed him - he was stone cold asleep on the changing table - and put him in bed. He squawked at me briefly, then remained asleep and hasn't stirred.
I did a little bit of housework, then started shaving. Of course, with a head full of shaving cream, that was when Younger Bro woke up and started yelling. I finished shaving hurredly, then stuck a bottle in his mouth. He drank half, then fell asleep, woke up, drank more, fell asleep. I moved him into his bed and turned the lullabies back on. Whew. Then, I actually showered.
It's 10:20, and I'm exhausted. Don't get me wrong - three hours with the children is NOT that bad. It's certainly nothing in comparison to The Wife spending the entire day at the Valerie Fund with him. But, considering that I haven't slept a full night in months and have started work after a 16 hour day yesterday, I'm pretty beat. Now, I'm going to bed.
I'm taking the end of my lunch break and busting off a few thoughts. It's certainly different this year, being my second year in district. For one thing, it's REALLY nice to walk in the meeting at school and know everyone! It's nice to be able to pick up conversations started in June, right from where we left off. It's also been nice, because a couple of my 8th graders from last year have stopped by to say hello!
The Boy is at the Valerie Center, getting blood. They arrived at 9:00, and they accessed the port and took the normal tests. His red count was low, but not horrendous. His platelets were okay. His white count was right in the toilet! Not so good, and I'm glad I didn't take him to the park on Sunday. Anyway, they did the type and cross and sent the blood up, and they started the blood at 1 o'clock. It takes 3 hours to do the blood, then another 30-60 minutes to flush his system, then deaccess and home around 5. Long day. Worse when he needs platelets also.
Grandpa stopped by and took Younger Bro for a little while. That was really, really cool. This isn't an emergency situation; The Boy just kind of sat around and watched television all morning, so it wasn't like she was dealing with two screaming children. Still, it was nice for Younger Bro to get outside for a little while. The Benedryl given as the blood starts also helps to keep The Boy sleepy and immobile, too.
The big thing at school today was the whole Swine Flu thing. Man, that's starting to terrify me. I'm authentically afraid, considering that The Boy is right in the age demographic that is apparently most affected by the flu, as are all of my students. And, being an asthmatic, I'm right in the at risk group as well. The Boy's namesake was killed by complications from the flu; if I gave The Boy the flu from school, I don't think I'd be able to forgive myself.
We're going to take some steps. I'm going to get in the habit of stripping downstairs and immediately showering once I get home, hopefully minimizing the risk of me bring the virus home on my clothing. Chances are, if I get the disease, I'll go up and stay at my father's house, although I don't want to expose him to the virus either. Maybe we move a bed downstairs in our house? Ugh, that'd be cold in the winter. A better solution might be to move The Wife and the boys up to my father's house, then leaving me by myself for the week, during which I'll hose down every household surface with bleach before they get home.
It's 1AM on the night before I go back to work, and I'm still awake. I think I'm kind of close to getting to sleep, and I'm happy about that.
I'm such a child. I really am. I get so excited about this stuff... excited, nervous, anxious, you name it. I'm ready to go NOW, even though I'm physically exhausted. And, tomorrow's not a day of rest - home, hospital to meet up with The Boy finishing his transfusions, then on to Dapper Dans. No rest for the weary.
Every time, this happens to me. First day of school, night before concerts, Christmas Eve, my birthday, the night before Younger Bro was born, the night before The Boy was born...
We had a wonderful day today. A truly fitting day for the official end of the summer and the start of the school year. Tomorrow, I head back to work for the teachers only day, and The Wife takes The Boy and Younger Bro to the Valerie Center for a checkup and, likely, type-and-cross and transfusion. But, until then, it was a wonderful day.
Younger Bro was up at 4:30, hacking and coughing. Turns out that the allergy and asthma stuff I've been suffering is somewhat contagious, because everybody's a little bit sick. Nothing more than a runny nose and cough - yet - but, the youngest one has his first illness. Mommy took him out to the living room, settled him down, and they went back to sleep.
The Boy came into our bed at 12:15 last night, a setback for his lone sleeping efforts. I spent about 90 minutes trying to get him sleeping in his room until I gave up; why take the hypertensive child and torture him? Anyway, he and I slept until 7:30-ish, when Mommy saw that I was awake and brought Younger Bro in. We lazed about in bed for a little while, watching some Elmo and an episode of the Simpsons on TiVo, before they got up for breakfast.
The rest of the morning was spent playing pass-the-baby, and it was wonderful. Younger Bro was cute, smiley, and happy, despite his cough. Mommy took him for a walk, and The Boy decided he wanted snuggle time. I am only too happy to oblige this.
My general feeling is that I never, ever want to turn down The Boy when he wants / needs attention and affection. Let's be honest; we don't know how long he'll be with us. We're hopeful that he'll live a nice, long life; we understand that he might not see his third birthday. I know for a fact that, if the worst were to happen, I want no regrets in terms of the time that I spend with him. So, we snuggled and snuggled, had lunch, and he napped in my lap while I dozed a bit and played video games on my iPhone.
At 2, I finally got motivated to move, and I went outside to do some necessary work. I weeded the garden for the first time since the end of July, then used my working momentum to clean out the garage. Not a full, thorough cleaning, but a rearranging, throwing away, and re-allotment of resources. Bottom line is that we got rid of a bunch of stuff and put more stuff on freecycle. When I was done, I took the boys for a walk, and we hiked around the neighborhood and picked up some coffee from Quikchek. It was interesting, because Younger Bro did NOT want to ride in the stroller for much of the trip, and I pushed the stroller with one hand and held him with the other, and he was happy.
We got back home, and Mommy took Younger Bro for changing and feeding. The Boy and I sat outside and did nothing in particular. I sat and listened to a podcast on my iPhone, and he kind of wandered around the garage and the front yard, looking at stuff. He's funny, because when he heads towards the street, we know that he's going to stop. He's just going to the back of our cars to read the license plates. (That's not to say we don't chase after him; he just has a funny habit.)
We came inside for dinnertime, and The Boy opened the rest of his presents from his party. It was fun watching him tear his presents open, then put the presents aside and play with the wrapping paper, boxes, and other stuffing stuff before turning his attention to the present. His favorite present, so far, seems to be an Elmo bath toy, although a Little People racetrack is a big hit.
(Who are we kidding - the biggest hit was the plastic straw-stuffing from one of the gift boxes. He's played with that far more than any of the presents. It's like tinsel from the Christmas tree - we'll be pulling it out of the carpet for a month.)
After dinner, we snuggled and played for a while. He delayed bedtime by asking for a rice cake and honey, but Mommy is singing him to sleep right now. I'm cleaning mouthpieces for school, using hydrogen peroxide and water to get some of the calcium deposits off.
Slow day. After we woke from our nap, we walked to the park. The Boy was in prime form, doing lots of big boy stuff that he'd never done before: crawling into and out of the tunnel on his own, walking (almost) all the way across the bridge by himself, pushing Daddy on the merry go round and riding on the swing! I'm so proud of him.
We're going to the Italian Festival downtown in a few minutes. Should be fun.
Granted, our real labor day was July 5, but whatever.
The Boy finally fell asleep around 2:45 on Friday night, and we both slept until 8. After that, we had breakfast and medicines and went home.
The BBQ at Band Guy's house was great! His son is fascinated by The Boy and Younger Bro, even though The Boy is still awkward around other kids. He's a sweet, gentle boy; most other kids... aren't. BG's son is such a GUY - he's so cute! TB isn't used to being around people like that, yet.
We were a bit delayed headig out because of TB's second nap of the day. This one I took with him. Even considering the naps, bedtime was quite easy, and he stayed in his own bed until around 6.
Today, we might go to the park. But, all of us have a bit of a scratchy throat and runny nose, so we might just veg. Then again, no reason we can't do both.
After finally falling asleep at 11:45, The Boy sprang awake at 1:15 and started walking around the room. He insisted that I draw up a plate of grapes and sit him in his high chair with the grapes and juice.
He's not eating; he's just sitting there and complaining and yelling. It's gonna be one of those nights. So much for being worried about having to wake up every two hours. My total sleep has been 20 minutes since last night.
We're staying one more night here at the Hotel St. Barnabas. The Boy's chemo finished at noon, and he had his mesna medications at 12, 3, and 6. His hydration was complete around 11. Theoretically, we could have gone home.
I wasn't for it, though, even discounting the huge factor of nurse help during Diaper Hell night. The only things he's eaten since lunchtime on Wednesday have been a small handful of noodles, a slice of watermelon, and two bowls of cereal. That's around 400 calories for 2 days. Not good.
I know that that's only chemo side effects, but it's not like he's got an extra couple pounds of chub to burn off.
Good thing we kept him, though. He had a large vomit attack after The Wife brought the other baby home. That would not have been fun to deal with at home.
In other news, he's been a real pain in the butt tonight. Real toddler stuff: fits, tantrums, no no no no no, and just plain orneriness.
(And how is it that orneriness came up in the iPhone spell helper? Is it that common a word?Weird.)
This might just be the extra helping of codeine-laced cough syrup I drank because of... wait for it... the cough I've had all week, but I'm blown away by the "Before 2005" playlist on my iPhone right now. It's a "smart" playlist, set up to have 250 tracks that have not been played since before January 1, 2005. The music, then, is from April 24, 2004 (when I first got an iPod), through December 31, 2004. It's a little freaky.
I was in a big classical and jazz phase at that point, apparently, with a lot of band music (I mean concert band, not rock band) thrown in for good measure. Lots of Stevie Wonder - that was when I just got his "At the Close of the Century" box set. The amount of stuff that I haven't listened to since then is immense.
From a life standpoint, it's hard to remember back that far. Let's throw a quick list of the things that have happened since April 24, 2004: got married; bought a house; fired from one job; got another, got pushed out of that job; got my current and third job since then; had two babies; had a cancer diagnosis for one son and my mother-in-law; bought two cars, one for my wife and one last week; bought 6 iPods since then (one iPod broke, and the second iPod is still working and is The Boy's at the hospital; the fourth iPod came with this computer; the third iPod was stolen, and the fifth iPod was replaced by my iPhone); spent a year as a housewife; watched the Yankees choke three postseason series; worked with four different marching bands; and had two nephews born.
All since the last time I listened to "Beat It." Life is truly odd. But, that might just be the cough syrup talking.
Night 3 of chemo was not particularly difficult. I called 11 for bedtime and was off by about 45 minutes; not too shabby. I got to sleep a little while later, getting involved with The Legend of Neil. Very funny, very NOT for kids.
He woke up a couple of times, but only once seriously. At 3:45, he was up and screaming for no apparent reason. It took about 40 minutes to get him soothed. I think he was just having aches and pains, but there's no real way to be certain.
We were both up at 6 when the nurse came to do blood draws. I love our nurse from last night - she's a cool chick and very competant -but she had the subtlety of a herd of elephants last night. I got my 6 hours sleep, just in 45 minute increments.
The Boy needs blood today - his hemoglobin was down to 5.6, which is mighty low for this early in the process. Sigh. Lunch with Uncle B at 12.
Got here at the Hotel St. Barnabas around 2:30, and the womenfolk left immediately. The Boy and I played for a while, then he sat down to rest. Grandpa came for an hour or so, and The Boy drank half of the coffee Grandpa bought me.
He slept through dinner, then ate the entire serving of noodles. He's finished his chemo for the day and done two of the four Mesna doses. That's the post-chemo, kidney-protecting medicine that they give him. We're now watching classic Sesame Street while he wanders around hitting his head on things.
I expect him to settle down around 11. It's 9:00 now. That's fine. I napped for an hour with him, so I'm good.