ALL about Caleb

so i thought we were in the clear. turns out he's back on decadron (steroids). i hate steroids!!! he's very sensitive to them & doesn't act himself. on top of that he has his pill (mercaptopurine) & his methotrexate (5 small pills taken every monday). last night it literally took me one whole hour to get him to down the 5 pills. i don't know what happened. he used to be able to down them on his own. earlier this afternoon he gagged after having been given the first dose of decadron. this evening he almost gagged. he never used to do that. it's so scary cause what if he throws it all up? yikes!!! i can't let that happen.

spinal tap was done today. yay! i thought we would automatically go into the next phase but it seems we have to go back on monday again. then it'll be a couple of weeks, then several weeks. it'll wane to once a month & then i think every 3 months (or maybe it's spinal taps every 3 months). we'll see. but caleb's doing great & caitlyn is too. :)

we'll try again this coming monday. chris will go this time. caleb's counts were pretty high (enough to where there are no restrictions on activities) but it needs to be just a little higher...

went to san antonio. no go. looks like it may have to be monday the 26th. his counts are fine, they just need to be a little higher. he has no restrictions. yay! so i took him to sams with me. i found a learn how to dance country dvd. i want to learn how to do the twirls & stuff. i made chris promise that that's what we'd do on the nights we don't have a sitter. i'm so excited! his mom was (is still?) a good country dancer but when i told him to ask her to teach him, i guess he was wierded out by it...i don't know, somehow i can't picture them practicing in her living room w/ caleb watching. i put it on this evening & caleb & caitlyn were dancing w/ me. it was fun. they were both into it. oh yeah, went to the e.r. yesterday evening. caitlyn slammed caleb's fingertips with the front door. i was getting his meds out of the car. i didn't want to risk anything. x-ray showed nothing. he was in some pain. you can literally see the line of door on his finger. he's o.k. now. i had called dr. lazarus & he said caleb could take whatever pain meds if needed...none were needed.

went to san antonio. no go. looks like it may have to be monday the 26th. his counts are fine, they just need to be a little higher. he has no restrictions. yay! so i took him to sams with me. i found a learn how to dance country dvd. i want to learn how to do the twirls & stuff. i made chris promise that that's what we'd do on the nights we don't have a sitter. i'm so excited! his mom was (is still?) a good country dancer but when i told him to ask her to teach him, i guess he was wierded out by it...i don't know, somehow i can't picture them practicing in her living room w/ caleb watching. i put it on this evening & caleb & caitlyn were dancing w/ me. it was fun. they were both into it. oh yeah, went to the e.r. yesterday evening. caitlyn slammed caleb's fingertips with the front door. i was getting his meds out of the car. i didn't want to risk anything. x-ray showed nothing. he was in some pain. you can literally see the line of door on his finger. he's o.k. now. i had called dr. lazarus & he said caleb could take whatever pain meds if needed...none were needed.

it's 11 p.m. need to get up at 4 a.m. to drive to san antonio. hopefully tomorrow's the day to start maintenance. he'll be npo cause he has a spinal tap. hopefully his last for a very very long time. then once a month trips. yay!!! i'm so tired of the weekly trips. actually, now that i think about it, we may still have to go once every two weeks for a particular medicine. heb & walmart do not necessarily carry what we need. after some confusion early on in this whole ride, we feel more comfortable going to one particular pharmacist up there in san antonio. i told chris then that that's the only place we'll ever go for his meds, even if it means special trips, so that's the way it's gonna be. my mom & i are gonna take the kids to san juan in the valley pretty soon (the church where people make their promesas to God) & i'm hoping to visit some people while i'm there (we used to live in brownsville) so that'll be really nice. an old college friend had twins a month ago. i was telling her that an ex-boyfriend has twins, she has twins, my best friend's sister just had twins in february or march, there's a new co-worker at my school who has toddler twins. what's in the water :) ? oh, yeah, i read in the paper about the little boy juanillo finally coming back to del rio. i'm so happy for him & his family. he's a miracle child. and there's the really premature baby i had mentioned a while back. he was in the paper several weeks ago. he's back with his family here in del rio too. he's a miracle child too...that's so wonderful!!! somebody's listening up there. sometimes we take things for granted & have to take a step back & really think about our blessings. (the survivors of hurricane katrina come to mind as i thought of that). so on that note, may everybody think about how lucky we are to have our jobs & families & have a wonderful monday!

aaahhh. one down, one to go. it was awful. had to turn everything off except their nightlight & listen to their crying. i felt bad & went back & made a deal w/ them: stop crying & i'll sit in their room w/ them which they accepted. mija was tired so she conked out rather quickly. this other one (who I KNOW is going to be diagnosed w/ ADHD when he's in school) is leaning over my shoulder & won't stop talking. he reminds me of my brother jitito when he was little. the exact same thing. that's what i get for being mean to him growing up. ;) he's still talking. he's been talking nonstop. & i'll say mmhmm or yeah to keep him happy. i just asked him what he wanted me to write about him or if he had anything to say: he says he's "... going to be the red power ranger, i mean the green power ranger, i mean the red power ranger for halloween." it's not even friggin halloween & that's what he's talking about. oops, gotta go, now he's starting to whine cause he wants me to cover his bed...

ok. that post was kind of psycho. i just want them to go to sleep at 8:30 like they used to!!!

i'm f*****g losing it. i can't take the crying. why can't they stop crying?!?!?! i'm going crazy. where are my meds...

caleb needed another bag of blood when he went on tuesday. his counts are slowly going up. doctor says that we'll try again monday to see if he's ready to go into maintenance, but he doubts it. caleb needs to go prepared with his topical anesthetic on his spine & on his port anyway in case his counts are up. doc says it'll more than likely be that following week. i freaked out last night cause the kids were playing in their room (and they play rough) and i saw caleb fall straight back. i couldn't see exactly how he landed but i knew his head hit the tv cart. sure enough i ran in there and he had a big purple bump starting. he only cried for like 15 seconds & he was laughing again! i put cold packs on it & he didn't like that but it helped and the bump went away. caitlyn has been a toot lately. i've had to put her in time out several times cause she's been mean to him. last night i talked to both of them about being nice to each other & not five seconds after i told them not to hit each other, in an instance of oppositional defiance, she punched him lightly in the chest & then looked at me to challenge me! arrghh! he's not mr. perfect either & he can be mean to her too so he gets his licks in once in a while. it's not too bad though. everything is actually going pretty good. life is getting back to normal again, for me at least. chris is the one being shortchanged right now, working 4-midnight & being with the kids from the time they wake up through 3 pm. we've been going back & forth about whether or not to put them in daycare. it seems that it's going to be very difficult to find somebody to watch them at home.

he finished up his chemo better than expected. he did need close to a bag of blood the other day but other than that everything's great. he's had a few mood swings & he's been very cranky today. he hates his new medicine (6-tg/thioguanine). it's a large pill for him & he hates to swallow it. i suspect it must have a yucky aftertaste cause he REALLY hates it... supposed to take him up on tuesday. we'll see how it goes. hopefully his counts will recover quickly so we can move into the maintenance phase (once we're in that phase, the san antonio visits should be just once a month). for now, the visits may be 1-2x a week until the counts recover...