Wednesday, November 28, 2012

a lot to do today

Sitting in the hospital room right now listening to Bela cry as two nurses try to find a good place to her for an IV. She has to get a s CT scan with contrast to check out her heart. Her EKG came back abnormal earlier so they also did an ultrasound of her heart just a few minute ago. One of her aortas, i think it is, where her broviac is placed, is a little enlarged and her breathing is too fast.

In some ways she is better, and not as bad as her first round. She still doesn't need oxygen nor a feeding tube.  The infection she has isn't the same one she had last time so she won't need to be isolated.  And the antibiotics for it are better for her system than the ones she had to have last time.

 She smiled at me today for the first time since saturday and it made me cry! It was a short lived little smile but a smile just the same. She is pale and her eyes are purple, but they aren't swollen anymore like yesterday. She had some albumin yesterday which helped with the swelling.  She's also on Adivan, Morphine, tylenol, bactrum(an antibiotic), two or three other antibiotics, zantac, and reglan. 

the cardiologist should be in today to see her and explain to me what's going on and the results of her tests.

Please pray for her heart and for this infection to clear up soon.  She just looks so pitiful and miserable.

Monday, November 26, 2012

Round three side effects

Round three is over but now the side effects begin. Bela is not doing so well tonight, although right now she's doing better than yesterday and earlier today.  She got her last dose of a medicine called "Bortezimab" (sp?) that makes the heart race. Her rate was very high all night last night and today, with vomiting, no appetite, and lot of sleeping. No fever, though, so that's good. She was sent down for xrays of her chest and stomach earlier today. The chest xray came back negative but the stomach xray showed "an obstruction", which the Dr. thinks is Teflitis again. She is on TPN, or no breastmilk; only nutritional fluids, and still has a heart rate and also low blood pressure. Just a little bit ago I talked to beto who's staying the night at the hospital and he said she's doing a little bit better.
Apparently I've used up all of my free space here on my blog so until I figure out how to post more pictures I'm going to post most of them to facebook . Sorry for those of you who don't have a facebook account.

Thanks for all of your prayers and please keep them comin. 

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.

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, 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.


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!


Thursday, November 01, 2012

Happy Halloween! actually these are pretty random

That's at like a 90 degree angle, dude!

Year round Christmas Store at Knotts

Date night: Chipotle

I love chocolate milk

Our special mom

Beautiful view from Bela's floor lobby of downtown Long Beach one morning around 6

I love when you can see Catalina island

Palos Verdes

Catalina again

Day trip to Laguna. It's pronounced "GEL-AH-TOE"

Johnnie Rebs!!!

That's right!

My mom wanted to prove to Amy that she DOES decorate for Fall ....lately.

ok here's the Halloween pictures. Santi ready to trick or treat at the hospital. beautiful. But, wait for it....

Buzz, your girlfriend, woof! Just kidding. I don't have a great caption. This just cracks me up

She dressed up as "Tinkerbela"  Our better pictures are on the other camara at the hospital. Something for you to look forward to!

Lesser known superhero:"Spiacula-Man"

awww....didn't notice Beto's eyepatch was on backwards

Bela continues to baffle doctors. I n fact last week Dr. Z said to her, "Bela you just continue to amaze everyone! You are doing fantastic and you look so good!" And to that, Bela responded, "I know, right?!"