Adjusting to life with recently diagnosed three year old with Acute Lymphocytic Leukemia (as told by his mom, Michelle)

10.31.2005

Happy Halloween! Caleb just got off his 5-day steroids. I hate decadron!!! He is so sensitive to it. He just goes completely downhill. The first couple of days he's fine, then he goes kaput. Lethargic. Just lying there. So sickly. Pale. Yuck! But he's starting to come around. We went trick-or-treating. I had to carry him most of the time. That's o.k. He had a great time anyway. Caitlyn was loving it. She was a beautiful Cinderella. They made out like bandits w/ candy. I'll try to post some pix as soon as I get a chance. Otherwise, everything is fine. They both have coughs right now. I was worried cause he was coughing really yucky last night & this morning. He's been taking some pediacare cough medicine (cleared it w/ dr first)& she's been taking some z-cof. All four of us got our flu shots (dr said we all needed to do it). I'm wondering if that has anything to do w/ their getting sick. Thank God his counts are up!

10.17.2005

Just an update...the twins have been great!!! Acting normal, playing like normal, getting in double trouble like normal!!! Caleb's hair is growing back. At first glance the peach fuzz looks dark but you can see the ends of it growing back almost a blond color. That would be so-o-o funny. Doc did tell us that it could grow back the same or completely opposite in regards to its texture/style/color. And it could always fall out again if he gets some vincristine. I don't think he'll be getting any vincristine during long term maintenance (ltm). Ooh, something exciting. Make-a-Wish sent us an application (courtesy of our awesome onc. nurse). Caleb has said he wants to go to Disneyworld. That would be super nice!!! We're hoping to go in the summer. Hopefully some of my immediate family will get to meet us there when we decide to go. My parents already said they would go (mom'll probably fly & anybody who know my dad knows he will not fly...). My brother & his wife may go if he's not out at sea during that time. My younger brother will probably tag along w/ my dad. Hopefully my mother-in-law will make it...I asked my aunt if she thinks she can come too. I think that would be so much fun, to be surrounded by people we love at the happiest place on earth.

10.03.2005

counts are super up...yay!!! white blood cells had been lingering at 1.0 for a long time & now they're 3.5...granulocytes (infection fighters) are at 50% which is pretty awesome, considering...and caleb isn't pale anymore & is eating (not very much mind you, but it's something) meat (chicken) again. he still doesn't touch red meat (he's still picky but hopefully we can work on that). doc doesn't want to see us for 3 weeks. yay!!! had a scare though. forgot decadron makes him super constipated. he was struggling. it was huge!!! i freaked out cause i thought he was going to have a hernia. really. chris walked through the door as that was going on. i had been sitting with caleb for about half an hour when chris took over. my poor baby was in pain. it sucked. he usually takes miralax (stool softener) every other day. we're gonna step it up to everyday. he was very swollen. it scared me. i had chris page the doctor (i love caleb's doctor & nurse-they are ALWAYS immediately available...they really care)& poor doctor was already asleep at 9 but he told chris that caleb should be fine & if it was a hernia we would know cause he would be in severe pain. and i can't leave poor mija out. she gets left out though w/out anybody realizing. we try to make it equal but it's so difficult. caleb demands so much attention. every chance we get, we try to give her over attention to try to make up for it...she's also very independent which makes it that much easier to give her less attention (she's been dressing herself for a year already) & she finds things to occupy herself (coloring, computer, dolls, puzzles, movies). yup, all these she does by herself. she can maneuver the mouse on the computer to play her "kids games" on nick jr. & gets her puzzles (24+ pieces) & figure them out in a heartbeat (even new ones) & selects the vhs or dvd movies she wants & puts them in the vcr or dvd player in her room. my poor baby girl. i hope this doesn't have long term effects on her behavior later down the road.

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