ALL about Caleb

Today was very trying. I had a slight case of insomnia last night & finally went to bed about midnight. Woke up at 4:30. Hit the road at 5:30 (after getting some greatly needed java) with my brother Mike and a very sleepy Caleb. Poor Mike with his excruciating back pain. What a trooper, he brought his meds along to help kill the pain (even though I know he suffered greatly). Thanks Mike!!!! Actually, the trip up there was pretty nice. Even the visit at the doctor's office. The nurse accessed his port (the port catheter is a semi-permanent line in his chest so he won't be pricked with needles multiple times). It's like a little plastic disc & you can see it slightly jutting out when he has his shirt off. Each time we go it's "accessed" by the nurse sticking the needle into his chest (I have to put on a topical anesthetic in Hondo for it to be numb by the time we get there). That's where the blood is drawn each time we go & how one of his chemo drugs is given. Yes, it's still pretty traumatic for him each time but I think it's finally getting better-he wasn't screaming so badly today. With the topical cream it doesn't hurt, it's just the fear of seeing the needle coming towards him that freaks him out. Who can blame him? Then, the spinal tap & intrathecal injection had to be done (to see if the spinal fluid looked clear (good) or cloudy (bad)...it was clear by the way-yippee! & so that the other chemo drug (methotrexate) could be administered). He's put under for the spinal stuff within a matter of minutes & wakes up pretty quickly too but then I have to wait for him to take a nap so they can monitor him & THEN we can leave. And poor baby suffers with nothing to eat or drink all morning long (& of course, if he goes without then we do too). We got there at 8:40 & left at 1:30ish. But his red blood cells were low so he needed some & we had to go to the Methodist Children's Hospital right across the street. That's where he went all crazy. I guess he thought he was done after the doctor's office...and he remembered the hospital from when he was first diagnosed....so I guess he was having these terrible flashbacks or something. Once they hooked up the blood & got it going he calmed down. He sat on my lap & got to watch cartoons & ate his Chicken McNuggets & was happy. But the happiness didn't last long. He's been in pain. He couldn't stand today either. Doctor said to monitor him, give him Tylenol as needed for the leg pain. (BTW-Thnx for the comments DJS-keep them coming-you give me peace of mind!!!) The trip home was yucky!!! We had to stop twice. My back is hurting from trying to support all 44+ pounds of him by trying to keep him off his feet when he needs to do his business. It's hard to see him suffer like that. When we got to Del Rio we picked up Caitlyn. She had a great time with Aunt Alice (Thank you so much Aunt Alice!!!). Caitlyn got to go to the store & is so nice cause she bought Cheetos for Caleb & chips for mommy & daddy. I had spoken with her earlier on the phone while I was in San Antonio & she also got to talk to brother. I can't wait for Caleb to be able to go out in public cause I know she desperately wants to go to Chuck E. Cheese. That was supposed to be our annual birthday thing with them, to go eat at their favorite place in the world, but of course...life happens! So as soon as we get the o.k. from Doc, that's the first place we're headed, mija!!! Got home & thank goodness my mom & Aunt Alice showed up to help me with the kiddoes (Chris was still at work). Gave him a bath soak cause it looked like a diaper rash might develop (again) & that was hard for him. He used to love baths until about 2 months ago. (In a previous post I didn't mention my Aunt Sharon who went to S.A. with me a while back. Thanks Aunt Sharon!!!) So finally, they went to sleep. I'm going to bed. G'night!

O.k. I have a few minutes. I just served them pancakes & they're happily stuffing their faces in from of the television (yeah, I know, wierd...we've been switching breakfast & lunch while he was on steroids & even though he's on different meds some of those habits are still lingering). Well on the last post I had great news cause he was walking...well, he had fallen twice that day. The second time must have been harder than I thought cause yesterday we were back to square one-he was in great leg pain when he tried to stand on it. I thought it was a combination of his being sore (that was the most he's walked ever since this all started) and the falls. So the whole day he sat. Having him go potty was/is the hardest. I think he'd rather do potty (#1 AND #2) in his pants than tell me cause he doesn't want to stand on his leg. I called the doctor this morning & he said I could give him Tylenol. He'll examine it tomorrow when we go for our visit.

My poor mom got a taste of Caleb's wrath last night. She babysat so Chris & I could go out & spend time together (as per doctor's orders!). She called cause Caleb was crying for chicken nuggets. He wanted a certain kind (which we had in the deep freezer). When we got home she was like, "I don't know how you do it." I was like, come on mom-you raised three of us! She was saying her age has slowed her down. My mom's so awesome. When Caleb was diagnosed & Chris & I were "living" at the hospital,she kept Caitlyn that whole week and a half. I bet that brought back some memories for her with the daycare thing & bath nights & temper tantrums. Heeheeheehee! And she only had half of the pair!! I'm really excited. Caleb walked from his bedroom to the kitchen & sat down to eat at his table. Then we walked to his bedroom so we could change his clothing. He had syrup all over himself from the French toast he ate for breakfast. Then he walked all by himself back to the computer room to be Chris. And he has been so much more talkative the past 2 days. (He's not quite back to talking as much as he used to but he's getting there!) For those of you that have been praying for him and thinking about us, I don't know how to thank you or how we could even repay those that have helped out in other ways. I know that God is listening to everybody & has great things in store for Caleb when he's older. I want to mention that there was a newborn baby from Del Rio who from what I understand was taken to the same hospital we were about the time we were discharged. That child was born very prematurely. Please keep that child in your prayers as well!!!

Caleb's on a new drug: 6-mp (mercaptopurine). Although he's off the steroids he's still getting hunger cravings. He's screaming his head off right now! He has been eating & eating & eating all evening so I've been unable to give him the medicine so far. I need to wait at least just over an hour after he eats & an hour before going to sleep (or eating again) so that it can be better absorbed. This leaves over 2 hours without food. This is rough!!! He had wanted to go to his crib so I put him there & now he's screaming for toast. Aaaaaagggghhhh!

Went to San Antonio today. He had a bone marrow aspiration & spinal tap. He's officially in remission (he had a 98% chance of that). The remarkable thing is that he hasn't needed a blood transfusion after the initial week at the hospital. The nurse said that some kids have multiple blood transfusions. Those prayers are working! We will be notified later about the bone marrow results (the %age of leukemic cells that are left). So we get to the office & boy are they cranky because I said since Caleb doesn't get to eat until after the procedure, than none of us are going to eat. So Caleb is starving & Caitlyn starts acting up too...well, we are already in a stressful situation when they're like that...so Caleb is on my lap & my legs feel this liquid warmth. What a rotten time to get PEED on. I had extra clothes for them, why would I need any for me?!? LUCKILY they had a clothes dryer & believe it or not, the pee smell went away.

Today was a good day. I stayed pretty sane! Caleb complains of his legs hurting (because of the Decadron) & he wants to be carried; So now, Caitlyn wants to be carried too. That sucks. It's hard to carry just one of them as it is. We went for a ride earlier. Caleb loves rides; Caitlyn hates them. She wants to stay home all the time. She says she's scared to go out. That's all I need-an agoraphobic toddler. Actually, when I told her we were going to Grammy's house she was o.k. with it. So, today was pretty uneventful. That's good in my book!

Here's my other beautiful angel! 

Here is a current picture of Caleb taken day before yesterday. He's eating a "Mexidog". 

This was taken about a month before he was diagnosed. 

Well, the kiddoes are asleep. Today was hard. Caleb wanted to eat EVERYTHING. The frustrating thing is he'll take one bite out of what I make for him & then asks for something else. And Caitlyn has regressed with her potty training. I was so excited right before Spring Break cause I thought we were finally through that hurdle. She's acting out so much. She has this habit of wanting to cling to my ankles at the worst times, like when I'm preparing Caleb's meds. Caleb has a diaper rash. It worries me. The smallest things can't be taken for granted because the greatest risk to him right now is infection. I think he got it from a couple of cases of loose stool & his quick weight gain from the steroids. If he gets a fever I have to call the doctor right away. Actually, I can't give him any OTC meds unless I have the doctor's approval. He still has some hair left. It reminds me of the fuzz that baby birds have on their bodies. This morning when he woke up he was saying, "Look at all my hair, it's falling out." It doesn't seem to bother him. I had a talk with him a few weeks ago about it. The nurse said that the hair loss doesn't seem to bother boys as much as the girls. The hair is everywhere. It falls in his food sometimes when he's eating & he freaks out about that.

I can't believe it is now Day 21. He's a "Wednesday" kid. Wednesdays are when he gets his IV push of the vessicant Vincristine. That's the one that's making him lose his hair. At the doctor's office a CBC (complete blood count for those of you that don't watch ER)was done & we got good news. His White Blood Count is up, specifically the granulocytes at 65% and his hemoglobin is stable at 8.9 and his platelets are way up to 102 compared to 45 last Wednesday. This is a dramatic difference from when he was first diagnosed 3 weeks ago. The word devastated takes on a whole new meaning when you are the one using it. On March 21 my twins turned 3. The day before I had a small birthday party with immediate family & rented a castle bounce. I knew something was wrong when my son only jumped for a little bit before falling lightly. He claimed that he had hurt his arm & the rest of the time just wanted to sit inside of the castle bounce. This seemed to ruin the rest of his afternoon. He had been pale the past couple of days but I thought it was because he was sick the month before with an ear infection & two weeks after that with strep throat. I thought maybe one of the infections came back. My mother advised me to go to primary care that evening but I decided to wait & go see a pediatrician the next day. I figured, if he's sick what's one more day (I really dislike primary care with a passion only because all last year the twins were sick with ear infections almost consistently every month & although it wasn't always so, they seemed to always get their ear infections on Friday nights/Saturday mornings which meant I spent ALOT of time waiting & waiting & waiting.) So anyway, the next day we were unable to make an appointment with his regular pedi & because of insurance changes I tried a different doctor's office. I asked for him to be checked for anemia & a full blood count. I stressed something was wrong. In the back of my head the word leukemia was haunting me but anemia sounded alot better. I knew a symptom of leukemia was bruising but the ones he had were so light that I only briefly entertained the possibility when I had initially seen them a few weeks ago. I was told I would get a call the next day for results from some of the tests & a few days after that for results of the other tests. I ended up getting a call a few hours later. It was 7:30 & I was at bingo with my sister-in-law, grandmother & aunt. The nurse specialist identified herself. When she asked if I was sitting down I knew immediately why she was calling. She told me she spoke with a pediatric hematologist in San Antonio whom she had mentioned earlier during our visit & said that he needed us to go to Methodist Children's Hospital immediately. I asked her if leukemia was suspected & she said yes. Talk about scary. That's 2 1/2 hours away. Two & a half hours to absorb what's going on. Not sure about how far along the cancer was. Wondering if my child would make it through the night. Crying until I was all cried out & then crying some more wishing I had taken him in sooner. I tell people I did all my mourning then. But I haven't questioned it. I remember a eulogy given at a funeral a few years ago & the eulogist saying it was not her place to question why. I found that so profound that it has stayed with me through this day.

As I type this, my 3 year old son Caleb is sitting by my side and his beautiful straight hair is shedding everywhere. I just changed him into his Bob the Builder t-shirt and it is already covered with wisps. It is now 6 hours later & I'm just getting to rest. Caleb gets very hungry because of the steroids & I'm having to feed him every 30 minutes. Literally. Whether it be a small snack or an actual meal, he needs something.