ALL about Caleb

we're home. caleb's fine. getting weak & pale. steroids & chemo are kicking in. he can't go near crowds anymore. no more wal-mart or mcdonalds or any other stores for him. :( time to stock up on hand sanitizer. like doc says, we can't live in a bubble so we'll just have to do lots of hand washing. we're in the process of moving to my aunt sharon's house. she graciously opened her house to us & she will stay with my grandparents until we can figure out what we're gonna do. hopefully we'll be ready to leave about March & maybe rent at that point. we'd still be saving money renting. we were already selling the house in the first place so that we could build but when caleb became diagnosed we decided to keep it on the market so we could save some more money in case of an emergency. i think we're doing the right thing...

we are in san antonio right now back in the exact same hospital room when caleb was first diagnosed at the methodist ch/ren's hospital. we went yesterday for his chemo & were ready to leave (& anybody who knows me knows it takes me about 15 minutes to leave somewhere) when he started shaking cause he was cold. i pointed it out to nurse who said he was probably hypoglycemic from not eating all morning (his appetite has been waning). she took his blood pressure & he was fine but she had us go back to the room again (there have 3 bedrooms set up for a cozy atmosphere)& i laid him down. when we first got there at 10:10 his temp was normal. when she checked him again it was 99.5 (it's not considered a fever until it's 100.5). then 10 minutes later it was 101.4 & so they accessed him. i grabbed the thermometer about 10 minutes after that & it was 102.5 (he had alot of blankets wrapped around him too). still very scary how fast it shot up. i tell you, those prayers are working!!! i know the prayer circles are still going for him. i mean, of all times, what better place & time to get a fever than at his own doctor's office instead of uvalde on the way home or home itself. it was awesome cause nurse had some antibiotics ready for him & then we came under a tunnel from methodist plaza to the hospital. is that cool or what? i bet alot of you didn't know that that existed cause i sure as heck didn't! so anyway, doc came for his rounds this morning & said we need to stay until sat morning. the port cath in his chest can have build-up & doc says he's sure that's what it was cause of how fast caleb got sick immediately after the flushing. he was glad at how fast caleb recovered cause he said some kids don't fare so well when they go through this. this morning he said his concern is what if there may be lingering bacteria & 3 days should be enough time to make sure it's all cleared out. that's fine with me!!! i'd rather be here than have something happen in del rio!!! but caleb's fine right now & i'm not worried cause even if he were to get sick again, like i said, we're in the best place we can be! :)

caleb had his shot on wednesday. he was a trooper. he cried a little bit but he was fine immediately after. no soreness. his behavior has been really good. he's off the steroids this week. he'll be back on them next week. caitlyn has been doing great too. i'm so proud of her. her favorite thing right now is doing puzzles. she's awesome at putting them together (25-30 piece puzzles). she drew me a sunflower & i could make it out. she knows how to somewhat color within the lines. i call her my little artist (she's left handed like her daddy & paw-paw [my dad]). she also LOVES to sing. it's hilarious.

things are a little better. called the dr's office friday & got approval to give tylenol (need permission cause they need to know what i'm giving him at all times; tylenol could mask a fever. i'm not allowed to give him children's motrin which was my favorite pre-dx cause it cured any fever they had). so anyway, went today to the methodist ch/ren's hosp. they have a clinic on the 3rd floor for the oncology/transplant/transfusion patients where they give special meds or treatments that aren't available at their doctor's offices. so they gave him the shot of pegasparagase sp? (PEG) & it went pretty well. i told him beforehand, "they're gonna give you a poke in your thighs", and he started crying but it was over very quickly & his legs weren't even sore. we were out of there in about 1 1/2 hours & then went to visit doc & nurse marian cause she asked us to drop by to give him some cookies (they're awesome there). we'll go back wednesday i think for normal cbc & iv push & iv drip if i'm not mistaken. have to look at the protocol they gave me to double check.

woo hoo, what did i say? here we go again, & boy was i right!!! he's still not eating very much. he ate a small amount of cereal in the a.m. & had a little bit of water. tried to give him some supplemental drinks (pediasure the other day) & nestle's breakfast drink but no luck. tried to give him some with a syringe. it's funny that he doesn't spit out the liquid meds but he'll spit out the breakfast drink...that shows he knows how really important the meds are even though he's too young to understand his illness. for lunch he didn't eat anything, i was happy when he finally ate toast this afternoon. i called doc's office to let them know. & that's not all...he wants to be carried the whole time!!! my family takes turns carrying him. we went through this last time but he was so weak that he would sit between my legs the whole day & we would watch cartoons together. i think that's what they mean when they say he's gonna hit rock bottom; he'll be super weak around mid-august cause he'll have just finished his 2 wk intensive treatment. so anyway, his behavior is crazy right now. it's not his fault at all, poor baby. in the past couple of weeks i've not been a patient mother but it kills me to see him go through this. he throws his tantrums & i can't let the discipline fall altogether even though i want to. i was being very firm with him cause when he beats this thing we don't want a spoiled healthy brat (that's the advice nurse gives us & a really nice salesman from dodge here in del rio who told us his son had leukemia several years ago...oh yes, we got a durango...same pymt as the van, nothing down, so it's like we're not skipping a beat financially yet we have a reliable vehicle now which is very nice...the van was reliable yet getting to the point where we didn't want any surprises). caitlyn has started acting out too. throwing temper tantrums, that's so unlike her but i'm not too surprised cause she pulled that last time...it's so hard on her, w/ caleb getting all the attention.

mijo had his lumbar puncture today. we got up at 4 am. hit the road at 5:30 & the kids only took about an hour nap. caleb was npo (no food/drink until after the lp)so he was super cranky...nurse said she wasn't going to put him under cause if she did he would wake up all crazy so he cried himself to sleep asking for cookies & chocolate milk (i wanted to cry at this torture but i understood the reasoning). he slept for like 3 hours-he had never done that before so we ended up staying late. he had the iv push of vincristine & his iv drip of doxorubinose (looks like koolaid)& we finally got to leave at 5:30. mija was so good!!! she aims to please & thrives on praise for her good behavior. she's such a trooper. she leaves with grammy when asked & doesn't make a fuss. caleb has to go back on monday to the methodist ch/ren's hosp to get two shots of asperiginase (PEG) which contains like a molecule of antifreeze in it. he gets the shots in both thighs at the exact same time. he had that at the very beginning of this whole ordeal. that is NOT going to be fun. then he goes back on wed for his regular visit. then we go back (8/8) monday through thursday for his heavy chemo & then the next week tuesday through friday. then we wait for him to get better for several weeks cause his counts will be superlow (induced by the chemo which gets the bad stuff but also, unfortunately, gets the good stuff too). my poor baby!!!! then he has to stay isolated for a month after that to make sure he recuperates and (God willing) if everything goes smoothly he'll be fine by October. we're thinking we might not need a sitter if Chris is able to modify his work schedule so that he can watch them in the a.m. & go to work in the p.m. we'll see.

haven't written anything cause not much is happening. just trying to let the kiddoes have some fun before d-day. i'm not sure how this wednesday is going to turn out w/ his spinal tap/iv-push/& iv drip. it's gonna SUCK for poor mijo... like nurse marian said...he's gonna hit rock bottom. we've been taking them swimming as often as we can at uncle bob & aunt alice's house (caleb is fearless-he jumps off the edge of the pool & i guess instinct kicks in cause he's able to hold his breath for that time he goes under-they both wear life jackets that we got 'em last year but he still sinks when he jumps in) & letting them get wet at my mom's in the sprinkler. we went to visit chris's mom & grandma since we won't be able to for a long while...it was our summer vacation...we took them to the zoo. they had sooo much fun!!! it made me so happy to see them enjoy themselves. they were slathered in suntan lotion. nurse said as long as he has that on he's ok (one of his meds makes him sensitive to the sun & he could blister). it's been great... oh-if anybody knows somebody with references (preferably who doesn't have much day to day contact with other children cause of childhood germies) who'd be able to babysit caleb & caitlyn please let me know. it would be around my school hours (about 7:15-4:15). $550/month. responsibilities would be watching the kids & following an easy schedule & feeding them breakfast, snacks, & lunch. more than likely i'll be able to give him the meds before i leave for work. both know how to use the potty (thank God :)!!! ) it might be hard the first month (august) cause he may be neutropenic which is just a fancy word meaning he will be very prone to infection but lots of handwashing & sanitizer should do the trick. i'm not sure if he'll be irritable or weak. but after that it should be cake! he just needs to be "isolated" through october but i don't think i want to put them in daycare at that time cause colds will be going around so the job will be until may. (since it has been considered a "disability", next year i want to try to place them at cardwell. if not, then daycare).