Wednesday, November 21, 2012

Why us???

    Maybe some of you have asked this already or wondered when this blogpost was coming. 

One of our friends asked me awhile back, "Do you ever wonder 'Why ME?!'" I've actually thought about this a lot. But not in the "woe-is-me-why-is-this-happening-I-don't-deserve-this-I'm-a-good-person" sort of way.  I think of others, very good people, who have experienced even more extreme tragedy lately.

I think the better question is "Why not?" Why not us? Who's to say we are exempt from this sort of thing? God didn't promise us a trouble free life, but He did promise to be with us in the troubles.  I will even go to the extent of saying I feel sorry for those who don't experience something like this at least once in their life.  We've truly seen the grace and mercy of God. 
I'm not saying I enjoy seeing my daughter suffer. Don't get me wrong. If I could've had the choice to opt out of this hell, I definately would've.  But we didn't have the choice, but we've been so blessed by all of the prayers, love, concern, compassion, care, and encouragement from all of you, the hospital staff, our family, friends, and even people we've never even met.

I am sorry for not writing in so long. I've sat down many a time to blog but have been too tired or too hurried or waiting for that perfect theological insight that would blow all of you away! All I can say is {insert perfect theological insight here}.

Bela is doing extrememly well. Better than the last round. Had minimal fevers a few days ago when she started round three. Last Thursday she was RE-admitted to the hospital. That's right, she got to go home for 2WEEKS!  I know a lot of you knew already no matter how hard we tried to keep it on the DL(that's "DownLower" for those of you not in "the know").  We had an amazing time at home. Went to get Christmas pictures taken with Santi. Santi didn't leave her side the whole two weeks. He's totally the protective big brother already! We took her on her first trip to Bake n Broil, Ralphs, and some other places, but mostly we just stayed at home relaxing, and NOT making multiple trips back and forth to and from the hospital. We did miss the staff a lot though. Bela did NOT like the car. If freaked her out at first.  She hardly slept during the day, I think because she wasn't used to her basinet mattress and because it was too quiet. She's used to all of the background noise the hospital produces.  She loved just hanging out with us and slept beautifully at night, a good 12 hours usually.  She loved her cloth diapers, of course.  I didn't do too bad having to flush her broviac. The Broviac is the central line placed into her chest with two lumins, or tubes, protuding out.  If they aren't "flushed", or cleaned, with heparin once a day the lines will go bad. I was scared at first but it wasn't so bad.
There was a nurse that came once a week and helped us to change the "dressing", or protective tape, over her broviac and clean that area. I WAS too afraid to give her a bath, however, and have to confess that we didn't bathe her the two weeks she was home. Needless to say, the nurses were a little peeved, especially since she returned to the hospital with a horrible case of excema all over her head! But hey, she was all smiles! I mean at this point, what's a little excema? It's all cleared up. Amazing what a sponge bath can do. Don't judge!

So going back to the part where she gets readmitted. That was last Thursday night. Friday afternoon she had her LP(lumbar puncture) in which they extract spinal fluid to test it for leukemia cells and insert chemo into the spinal column for preventative measures. At the same time she had her Bone marrow aspiration in which they extracted bone marrow to test it for leukemia cells. So far we've still not received any word on those results. 
She started chemo Friday night and finishes tonight! She has one quick push of a drug called Bortezimab(sp?), and then we wait for her counts to recover. Based on her timeline from her second round we are hopeful she will be home for Christmas, maybe even before the 24th since she's done better this time than the last.

Thanks again for all of your prayers!!! I will try to be better at updating daily so as not to lose so much of her story. Please pray especially for protection over her heart and brain.  They tested her heart last Friday with an echo and EkG and so far so good. But the long term effects of all her "cocktails" is what concerns me most. Only time will tell.

And one last thing. Remember that beto and I run our half marathon Jan. 20th.  We have a fundraiser for the Leukemia/Lymphoma society Dec. 8 at 7pm at the Long Beach Church of Christ, 3707 Atlantic Ave.  Here's a list of what to expect at the event, $10 at the door

Auction items such as:
    -signed drumstick by Rick Allen, drummer of Def Leppard
    -one hour airplane ride from Long Beach airport over the southland for you and a guest
    -Up to 8 tickets to magic Castle Hollywood with gift certificate to use for food
    -a variety of items from hair salons, Trader Joe's, clothing stores, toy stores, etc.

Food!
Music by Cazz! Find him on itunes.
Handwriting analysis!
Photo booth!
Live screenprinting on shirts with original design!
Leukemia survivors will share their experiences and one of Bela's doctors will give a brief overview of what is leukemia, etc.to raise awareness.
It's all for a great cause. join us and bring as many people as you can!






Santi got to help Bela out during physical therapy a few weeks back. The therapists are awesome and so patient with him!

Beto painting Santi's hand for the canvas.

Putting his print on our canvas. Now it's complete!

With the Halloween dolly someone brought her.  This is Halloween day.

I feel good!



"Trick or treat!" Love these socks from aunt Glenda(my sis) 


Practicing for prom pictures already! In her "Tinkerbela" costume

"I can feed myself thank you very much"

Going home! Dr. Patel is so funny he insisted he got the first picture with Bela.

Leaving the floor

All comfy cozy in her getup that ya ya bought her.

Best staff ever!

more of the best

Two of her awesome oncologists!

here we go!

Into the van!  It was so surreal, I'm surprised I didn't ball my eyes out.

Holding on for dear life. Didn't like the car very much.

"CHANGE ME NOW!"

Can't get these onesies at Target, folks.

one happy baby

Practicing for her role as Jack the dog

Someone help me! There's a giant Guatemalan head on me and I can't get up!

Bela looks up to him already...literally

"For gosh sake don't shoot I'm part Italian!" 
Capitan SPAZ

At home!!!

"I like to move it move it!"

THEE BEST big brother!

On the look out in his cave for pirates



He doesn't leave her side when they're awake


They're not watching TV. They're watching ya ya dance her jig!


You're kissing my face off kid!

 

2 comments:

  1. Hey!!!! Sistah! This is me, not judging. Taking a bath just takes time away from other things, right??? gotta have perspective on the important things in life and you just gave it. Thanks.

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