ALL about Caleb

nothing like meme's kleen kitchen's chicken. yummy (thanks mom!). so anyway, just got back from cbc visit. dr's pleased w/ caleb's granulocytes (infection fighters in the white blood cells) & now we're gonna move into the next phase in 2 wks. this is the first time we get to skip a week. yay!!! but i'm not looking forward to "delayed intensification" which is just what it sounds like. in 2 wks he'll be getting an lp (lumbar puncture aka spinal tap-i don't know if i've ever mentioned it but the lp is done from time to time to check the clarity of his spinal fluid & to administer meds through that area cause leukemic cells like to hide in there & in the cerebral cavity) & some vincristine & some new drug doxo-something...i've gotta do my research...nurse said it looks kinda like koolaid & its a 30 minute drip. the lp means npo (i hate those days!!! npo means no food or drink all morning until after the lp). but that is nothing compared to 2 wks after that...he'll be taking some heavy chemo for 4 days in a row & then 4 days in a row the following week & he'll be on his decadron (steroids) for 7 days. i don't know how we're gonna work that out with our jobs but we'll figure something out. i hadn't even thought about our weekly visits during the school year. it'll wane down soon enough to once a month but we don't know how far down the line that'll be. it's like we've been on a holiday with this "interim maintenance" cause he's been like a normal kid except that he looks like mr. clean. the last time we went through this was at the beginning so it's like "here we go again!" only this time at least we're somewhat prepared with what to expect. he's gonna be neutropenic (which means he'll be very prone to infection due to the chemo) & nurse said he's gonna hit rock bottom. not looking forward to it at all...

if you know my mom, please don't tell her about anything i wrote about her cause then she'll try to hit me with a chancla. ;)

caleb's counts were great today!!! hooray! his white blood cells are up & the granulocytes make up 25% of them (granulocytes fight infection) as opposed to 15% the past couple of weeks with a lower wbc count. red blood cells & platelets are stable. now, a quick note before i continue (actually-i added this paragraph in after i wrote the following)-in case some of you don't know, this is an on-line diary that i choose to share with family, friends & the public to share caleb's progress, mainly about our trips to san antonio. i share the things that stand out or seem significant & may even use this as a place to vent. i try to stay humorous cause that helps make things better or else i think i'd go crazy; so if i leave things out or if i seem negative please remember those things. most of the things i write aren't proofread either so i want y'all to know i'm not illiterate. behavior was another thing. yikes! each day is a different mood for caleb. today & yesterday-talk about hyper...& it sets caitlyn off to mimic his behavior. i had an eye appt at north star mall today so we had time to go return a shirt for my mom at her favorite store-marshall's. they were fine at first then they got restless so we had to leave & get something to eat. then we went to the mall & they wanted to be EVERYWHERE. caleb was being his charismatic self saying hi to everybody which was fine but he talks so loudly. i get loud & hyper myself when i'm with him so i guess that's where he gets that part from... my mom thinks he's withdrawing from the steroids though cause it's such a significant change. it's funny cause he's so used to "the dr's office" that he just charged right into the room with me to get my eyes checked. he just made himself at home. then we went next door to eyemasters & he wanted to run around the mirrored pillar over & over & over & over & over again & again & again. it made me dizzy. then he went to join grammy & caitlyn who were sitting on a mall bench & i got back to business & then i hear "caleb!" "CALEB!". and there was poor mom with two toddlers making circles around her trying to chase each other. after about an hour (there were problems with the insurance-doesn't that figure?) mom wanted to stop at mervyn's so i talked to them about behaving. so there we go into the store & before you know it the two boogers made a beeline for the purse section (which i found out is a wonderful maze for kids wanting to ditch their parents). now i don't care for spankings & grammy doesnt either (so she says although i remember differently from my childhood) but at this point my mom was in full mexican mom mode (i'm glad she didn't have a chancla)& was like "darzelos unas nalgadas!" & she gave a light swat on his rear & i was dumbstruck like "duhhhhh" then she's like "give her one too" so i gave caitlyn a light swat. & of course, this didn't even phase them. the whole time all that was going through my head was how i'm such a bad mom & what was that lady at the sales counter thinking of us giving a leukemic kid a spanking! ay-yie-yie! i was so embarrassed at the sight we must have been & so there we go dragging them out of the store. later we went to the ross store (i wanted to make it up to my mom & told her to go shop away while we waited in the van but of course grammy couldn't leave them when they were asking to join her) so there we went again. boy we're gluttons for punishment ;)! cailtyn pooped herself & was freaking out cause i had to throw her undies away & told her nobody knew, only me & her (& now the rest of the world!)& that i had extra in the van. their behavior was ok because they were in baskets but then after a while caleb had to go pee & didn't want to get back in the basket so forget it. we drove back to del rio. caitlyn conked out but he stayed awake until right after bracketville. & he talked the who-o-o-le way! uh-oh-that was 3 hours ago, and what perfect timing...he's just woken up & is calling me. gotta go!

o.k. so maybe it's not that fun. unless you get some unusual pleasure out of it. i do. & you get a free t-shirt out of it sometimes. & free cookies & dixie cup kool-aid (at least in my past experiences). so anyway. sign up, please if you're from Del Rio...or actually, anywhere you are cause the local blood banks could always use blood I'm sure. so anyway, this Friday which is the...24th? from 12-about 4pm the bloodsuckers will be at wackenhut. call 778-0096 & ask for the medical dept for more info. in all seriousness though-my first time giving blood was when i was a resident assistant at utsa (chisholm hall) about 10 years ago. it wasn't too bad, really-i'm the biggest chicken when it comes to needles so for me to say that means alot-& i've given blood plenty of times thereafter. the irony? at that time i put my name on the bone marrow donor registry. i got a letter about 2 years ago at my parent's address cause i was a possible match & they needed to know if i was still interested. i told them of course!!! all my immediate family was visiting my grandparents & my grandma asked why i would do such a thing. i'm not making this up...i told her what if my kids were to be afflicted with something (my cousin had hodgkin's disease so the reality felt subconciously close i guess)...i would want anybody & everybody to help....if all it meant was a shot or even minor surgery & i could save a life from something as little as that- i mean, what greater gift can you give? and look what happened!!! hopefully caleb will never need a bone marrow procedure done. minorities are badly needed on that list. my plea to you is that if you are able to make it on friday, please put yourself on that list...you can always say no if you get cold feet up until the very last minute to be a bone marrow donor. so that's my little soapbox...oh! but if anything else, please try to make it out to give blood! thank you!!!!! p.s. they never contacted me back about donating bone marrow so i'm glad that man never needed it after all.

I'm pulling my hair out!!! Caleb started his steroids (dexamethasone aka decadron) again yesterday & today he was showing it. He's been VERY irritable w/ some major mood swings. Literally from one second to the next he'll be screaming his head off & then he'll be very loving. My poor baby. It's hard knowing it's not his fault when he goes Dr. Jeckyll & Mr. Hyde on me. He'll be taking them for 3 more days (5 days in a row every 28 days is the cycle for the steroids). His liver seems to be fine & his counts are stable. I forgot to share a story about yesterday's ov. Whenever he's accessed, the nurse has to prepare it first by cleaning the port cath area on his chest with betadine (sp?) swabs & then alcohol swabs. Caleb has started "helping" her by cleaning the other side of his chest with the same things (he even uses a glove like her). She has a New York sounding accent & she'll tell him "Now stay out of my business" when he gets too close to her area. So yesterday she moved her hand close to his area I guess & he tells her "Stay out of my business Nurse Marion". We all started laughing. That's so Caleb though!

spinal tap today. all went well. same ole-same ole. this is wayyyy off topic but i've gotta share this story because i feel like something is going to get done & maybe it will help any of you dealing with hospital crap: 3 years ago when the twins were born in brownsville they were in nicu (neonatal intensive care unit)-routine for preemies. there were 3 separate account numbers (one for my hospital stay, one for caitlyn's & one for caleb's). we paid off all of them by june (thank goodness for double coverage!). so anyway, later we get a bill for 419.35 on caleb's. after months of hasseling between ins companies & the hospital, we paid out of our own pockets on a personal credit card just so it could be done & over with. at that time we moved back to del rio. half a year later i was reported to a collection agency for $2000+ (despite what they say, we never got a bill for that). after dealing with the collection agency (which of course is working for the hospital & treats us like dirt) i collected all my documentation (dates/time/rep names & their id numbers & extensions) & i asked for an audit from the hospital. nothing got answered. nobody ever contacted me with those results; instead i got a call from the collection agency. now my spectacular credit rating is ruined because it is now on my reports (i will let them know it's being disputed-alas, i've been through that before too). believe you me, i am pissed. the hospital has never been cooperative in routing me to somebody specific to speak with so i did more research & found out they are "hca affiliated". i looked that up on-line & found an ethics hotline number for hospital employees & told the guy my situation (there are a few inconsistencies that have always looked fishy to me & have been pointed out in my letters sent by cert mail to the hospital & collection agency). so after a while the guy was entering stuff into his computer he told me to hold on a sec cause it looked like he stumbled on something...then he said he was really glad i called...i told him if we owe that money, we'll gladly pay it, but i need the proof which has never been provided. i'll keep y'all updated-i'm just so excited cause this has taken so many hours over the phone over 2 1/2 years & i feel like i'm going to be "exhonerated" so to speak. so advice: keep dates/names/extensions/notes after each phone call & question anything on the itemized statement that might look like a typo or a simple data entry error.

we went for our visit today. doc says he doesn't know what it was that made caleb's liver out of whack but we're gonna go ahead & resume his at-home chemo drugs (mercaptopurine & methotrexate) at half doses & he wants to resume seeing us weekly for monitoring. next wednesday caleb gets another spinal tap. we were also set up for an audiogram to check his hearing cause he tends to speak very loudly & likes to hear music & t.v. super loud. i told mom he does have something wrong...it's called selective hearing!!! he's quite a ham. he was loving it at the ear doctor's office...talking up a storm (in his loud voice mind you). all these people were laughing & he just ate it up. where does he get that from?!? i tell people he's back to his old personality & then some. he's too independent for his own good (last week he just walked away with the med tech & left me behind in the lobby). caitlyn stayed with mom in del rio. they went to the store & saw this toy volcano-sprinkler that caitlyn liked. she told my mom that she needed it. hehehehe-way to work grammy kiddo! ;)

caleb just fell asleep 1/2 an hour ago (at midnight). yikes! what's up with that? he's doing just fine & his behavior was good today (yay). no call from doc yet about the liver thing...

we went to san antonio (me, my mom, caleb & caitlyn) yesterday for the ultrasound & came back to del rio. went back to san antonio today for the results (we didn't spend the night cause i don't think i could stay sane with the kiddoes all afternoon & night cooped up in a hotel room). caleb has been acting out BIG TIME!!! he's been very agressive & really dislikes me right now (he hits & talks back). it's been hard cause he was never like that before. i attribute it to me being the bad-mommy-who-gives-yucky-tasting-medicines. but anyway, i'm dealing with it. this is kind of wrong but i kind of felt better when he started acting out with my mom (hehehehe...sadistic, huh?). but anyway, turns out those funky numbers with his liver were REAL!!! scary. doc said that those huge numbers (from the cbc draw last wednesday) were cut in half by the time the next cbc was done on friday so whatever it was started to clear up. doc said that caleb was definitely exposed to something as he found remnants of a virus that can cause mononucleosis & he mentioned the epstein-barr virus (yes, the kissing disease...i thought i wouldn't have to worry about that til high school! :) ) so he's gonna run more tests. the ultrasound came back clean (whew-big relief!); hepatitis was ruled out (which is a risk with blood transfusions of which caleb has already had 3 bags thus far). he'll let us know in a few days what the results are. it may be that caleb was fighting off an infection (i tell mom that God's working his little miracles) cause because of chemo, caleb shouldn't have had the antibodies to fight off an infection, yet he came out just fine. i asked doc if the episode a couple of weeks ago (where we eventually thought dehydration/hypoglycemia) could be related & he said it's quite possible... i'm not worried cause caleb has been just fine & then some. he's more hyper than caitlyn again. mija is doing ok. he's been very bossy with her & i have to encourage her to stand up to him & not let him try to manipulate her. we're trying to work with his behavior. we ran into a young mother at the office who's 5 year old daughter is into her 10th month of leukemia (& of course, my kids are quick to point out...look at that little boy mommy...thank goodness caleb is nearly bald too or i would've been even more mortified than i was!)so my mom got to talk to her cause i was called into the room already & my mom said that the mother went through a period of agression with her 5 year old as well so I guess it's just a phase of the leukemia...that her daughter just recently started getting back to "normal". that poor lady...had to move in with her parents to make it financially & is divorced with her ex-husband in iraq right now. it makes me even more grateful to know how lucky we are to have sooo much support from everybody!!! i asked my mom how other people do it...those that don't have any kind of family or financial support. it makes me feel bad because i can only imagine how difficult it must be for them...