Just plain and simple--I'm worn out

We get our days off to a wonderful start! I have to admit that it does take me a few minutes to fully wake up and get out of bed, but once I'm up, I'm feeling great. Renewed. Rested and ready to tackle the day. How could I not, when the things I wake up to are so wonderful!! There is sunshine peeking through the curtains. Kateli reaches over and gives me a great big hug, a kiss and says "dias mami" (good morning); a smiley baby about to be plopped down on my lap for his morning feeding; followed by a smile from my hubby and usually I get a good morning kiss (I think that depends on how bad my morning breath is :)! ). As if it's not enough to make my day, I always anticipate Kateli's great big smile and giggle when she first sees her little brother in the mornings. She says "mano, esperto!!" (brother is awake!) and reaches to grab his little hand once he's in bed with us--she plants a big kiss on his little tiny hand, and just gets the giggles!! We sit in bed for a little while, watch Veggie Tales "The Story that saved Christmas" or "smas" as Kateli calls it--all the while Kateli is snacking on something, and Joshua is nursing. And then we finally make it out of bed....

The rest of the day goes something like this....
* meds for Kateli
* Juice some fruit for the kids
* Fix Kateli's real breakfast, which ranges from "rroz and chicha" (rice & sausage) to "agna" (lasagna) to sometimes even "pancakes"
* Make myself something quick to eat
* mix cereal for Joshua
* we all eat together after saying a quick prayer
* Clean up dishes
* Joshua takes a nap, while Kateli and I Play (about 9:30am)
* Kateli asks for a snack
* Joshua wakes up (about 10:30am)
* Kateli asks for another snack (cheese in a bag)
* Kateli takes a morning nap, Joshua and I play (about 11:00am)
* Kateli wakes up (about 11:45 or noon)
* figure out what we are going to eat for lunch, Kateli usually wakes up hungry
* Fix lunch and we all eat (about 12:30P)
* Pop in a movie and sit on the couch for a little while; Joshua plays
* Kateli asks for another snack (this time "arroz" or rice in a bowl or ham)
* Kateli asks for more arroz--I persuade her to eat apple or some type of fruit
* Joshua goes down for afternoon nap (about 1:00p)
* Try to do something constructive with Kateli, color, read, look at books, go in the backyard etc etc
* Kateli wants to watch more TV and asks for yet another snack (about 2:00pm)
* Kateli goes down for an afternoon nap (about 2:30pm)
* I GET SOME QUITE TIME TO MYSELF!!!!! YAHOO!!!
* Kateli wakes up, asking for yet another snack (3:30 or 3:45pm)

oh, I can't even do this anymore!! List what the rest of the day looks like because it would all just reasd "kateli asks for another snack" "kateli wants another snack"...and so on and so on!! By this time, I'm so worn out...I''m so ready for Dan to be home. I'm tired of the constant trips to the fridge to get snacks. I'm tired of watching my poor little girl just be starving all the time. I believe her requests for food are legitimate, and so I oblige. At the same time, I've seen my poor baby go from her petite frame, high energy, playful, and smiley self to a child that just does not look very comfy in her own skin--don't get me wrong, the smiles have not faded from her sweet little face and her spirits are still high!! She's constantly doing something or saying something that makes me tickle!! But she's put on a few pounds that make it a little difficult for her to want to do much more than sit on the couch and watch TV, or sit on mommy's or daddy's lap, or be carried around all the time. Before all this even started, bedtime was always a fun time for us. She'd give me smooches and head upstairs with daddy behind her. She'd climb the stairs, and at each step she's yell over at me "night night mami" before she treaded to the next step. She'd hurry up the 15 steps to go take a bath, the entire time smiling from ear to ear. Last night, heading upstairs to bed was a little different. She started out climbing the stairs, took the first step, got up to the second step and turned to me and said "pesa, mami. Hold" (translates to "heavy, mommy, hold") extending her arms towards me. I got teary eyed, as I picked up my little girl and hugged her as tight as I could--letting her know how much I love her! She says "no bath, Kateli" and she doesn't even want to change into PJs. We still read books and sing "me so" and she goes to bed just fine. But the enthusiasm for her baths and bedtime is just not there--she's so worn out by the end of the day.

Her hair is starting to thin out and that makes me so sad. Strand by strand it's falling out. Katherine's hair is already fine and she doesn't have that much, that I'm sure soon it will all be gone. So, I ask myself why does that make me so sad?? I know that it's going to grow back, after all it's just hair, right? The simple answer is, yes. But I don't think it's the actual hair loss that makes me sad. It's the reason why she is losing it. It's an intense treatment, and hair loss is just one side effect of, I'm sure more than one of the drugs she is getting. Chemotherapy is serious, but so is Leukemia. So, we'll take the hair loss, and trust that while the drugs are harsh, they will do their job and rid her body completely of this disease. After all, hair or no hair, Kateli will continue to shine through this whole ordeal. We'll get used to it. And she'll look beautiful with her little bald head. The positive is that spring and summer are around the corner, no hair means wearing hats outdoors, but it also means being a little cooler!

A little update on yesterday's appt with the doctor. There was no scheduled bone marrow check, so we just went in to get her chemo shot. Of course, nothing goes quite as planned and we ended up in the clinic much longer than I anticipated. Turns out that drawing blood for labs yesterday was a bit more laborious than usual. The nurse accessed Kateli's port (that's what they call it when they poke her to insert the needle in her port), and began to draw blood--well, nothing was coming out!! So, she said that a lot of times what happens is that hemoglobin will accumulate at the port entrance ( I guess) and so they have to administer a medicine losen it up. Of course the med was not on hand, and so they had to order it. When it finally arrived, the nurse attached it to Kateli's port and it had to sit there for about 30 mins or so, before she was able to draw blood. Finally the nurse was able to get blood drawn for labs, and then we had to wait for the numbers to come back before they would administer the chemo shot. So, we waited. Patiently we waited. Luckily, since there was no marrow to be drawn, Kateli was able to eat breakfast. I did pack a bag of cheerios, though, just in case. Guess what?? we went through the bag and were still sitting in the waiting room. Of course the satiation from the cheerios only lasted a little while, and we didn't get out of there without Kateli asking for "ham and cheese"....:) So, we did meet with the doctor. I asked a few questions, got some answers and the rest are pending until we get back genetic test results. The good news...Kateli goes off the steroids next week!! Her last dose is on Tuesday morning, and then we are off!! For those of you wondering...yes, this means that her normal appetite will return and we WON'T be eating ALL THE TIME!! The doctor said that next week he should have back the genetic test results and planned out Kateli's treatment for the next 4 to 6 months, the consolidation or post-induction part of the overall treatment.

SPECIFIC PRAYER REQUESTS:

• Please pray for energy and stamina for me to keep up with Kateli's food requests; as well as getting her to eat fruits and veggies. She still has a week on the steroids, and I was informed by the doctor and the nurse this wednesday that it's only going to get worse before it gets better--the eating that is!!
• Please pray that the genetic test results do come back by next appointment and that the doctor has time to thoroughly go through the information to come up with the best consolidation/post-induction treatment that kateli will follow for the next few months.
• Please pray that the genetic test results come back with good news--apparently the genetics of the leukemia cells play a huge role into it's curability and chance of relapses.
• PRAISE!! Kateli's blood count numbers are up!! Please do pray that they continue to stay high, or out of critical ranges!

Once again, thank you for reading our blog and most importantly for your continued prayers for our family!