Just pics

"I can't believe people I've never met made me this pillowcase!"

Ready for a night out on the town.

"What?! Why are you just now telling me this!"

Comfy cozy

Good week

Just a short update. Bela is still doing well, drinking lots of breastmilk, mostly from me or bottles. It may be more bottles than me soon though. I seem to be "drying up", but I'm going to try some supplements. We'll see.
Her platelets continue to climb. They checked yesterday and they were at 66,000.  Hopefully they'll be 75,000 by Monday so they can start Chemo.
I met another mom from the Hem/Onc floor yesterday on the ride down in the elevator. Her teenage son was diagnosed July 6 and since then has only been home 3 days. I met her today for the first time even though I've seen her son many a time "doing his laps" around the floor attached to his IV's. We got to talking about how as parents we say things to the doctors and think things we never imagined saying or thinking before our kids were sick. We don't want them to have chemo but, considering the alternative, we actually PREFER to see them throwing up, because then we know the chemo is working.

Bela starts her second round of chemo tomorrow, but before that they will perform a lumbar puncture with insertion of chemo as a preventative measure, a routine procedure.

We had a wonderful last few days taking her out for walks everyday.  She's been very happy and playful.  Thanks for all your prayers.

We're going to run a half marathon!!! Help!

My Fundraising Page

Hey everybody!  Beto and I are went to an informational meeting last night about Team in Training and met some really wonderful people, including a cancer survivor who ran his first marathon while undergoing chemotherapy. What an inspiration.

 We are looking forward to making new inspirational friends with Team in Training to raise funds for the Leukemia and Lymphona Society.  We will be running a half-marathon January 20, 2013 in honor of Bela and our friend Diane.

 Please follow the above link to our page.

We appreciate it!  We are so excited and motivated.  Thanks for considering this cause!

This is what I'll be doing while my mom and dad are out there running their butts off, literally!

Amazing day!

First of all, THANKS to our good friend Layla for spending the night! What a gal!

Today was quite a day! In the morning Hyundai came to present a check to the Jonathan Jaques Children's Cancer Center.  Santi got to go in Bela's place.  The kids placed handprints on canvas and on an honorary labcoat presented to one of the oncologists. There were news crews there with all their camaras. Pretty fun.  

 As far as Bela's progress, we are beyond pleased.  Her platelets are climbing little by little.  Right now they are at about 65,000 and need to be above 75,000 for her second round of chemo to start.  The prediction is Monday she will begin round 2. 

Some more good news is that she tested negative for "residual disease" which rates what chance she will have of a relapse in the future.  This is very good because, obviously, she is at very low risk for cancer ever coming back, but also because they won't have to increase the intensity of her chemo.  She will even receive two days LESS of one of the drugs this next time. so Praise God!!!

Bela with Auntie Layla

 She is taking a lot of milk and breastfeeding very well.  The occupational therapist will be signing off later this week, sadly because she's awesome, but that means Bela is doing well on her own.  When she is not on continuous feeds through her feeding tube we can walk around freely in her room, which feels weird but wonderful! We even got an OK to take her out on walks around the hospital!!! OH MY GOSH! It was the best day ever today!     

 Let me add something about how awesome the nurses are. They say they literally fight over her and who can feed her when we can't be there. The other day one of the nurses felt so bad about taking my dinner tray away before I got there, she bought me dinner in the cafeteria. I though she was just going to get me an extra tray, but she paid with her own money! Who does that? Also, today when we walked in there was a new outfit for her on her bed that another nurse bought for her.

 Her nurse today and I talked a long time and one thing that stood out to me is that she said there's something about Bela's "ora".  "She just has this strong sense of peace about her that attracts people to her!" , she said.  That's the Holy Spirit, I know. I told her she literally has 1,000's of people praying for her.  I look forward to moments like that where God opens the door to talk about Him and how He's working.                                                                      

Santi (R) Putting his handprint on the canvas

One of the oncolgists with the handprints on her honorary labcoat.

Goodie bag!

Bela next to my baby picture. Scary!!!

Hmmm Stacey, how soon can you get me outta here?

Precious time with Bailey!

Physical therapy

The nurse pimping out her wagon for her first walk.  She was like in a queen's carriage!

Putting her in.

He's the best big brother

We're only outside her room but we're so excited!!!!

She was so relaxed with her hand on her knee. Obviously not one to wear her emotions on her sleeve.

Getting closer to the exit!

I think this is our very first all family foto!

Elevator! Can you smell the outside yet?

EXITING THE BUILDING. I HAVE BUTTERFLIES!

WE MADE IT! 

Dancing, running, jumping for joy!

Doing his victory dance in honor of Bela

I'm eating outside. I'm awesome. GOD is awesome!

Never noticed how beautiful all the palm trees are there!

Finally on the way back up to her room she realizes what just happened. 

Making sure she's ok after her walk.

Daddy didn't recover so well. Santi says "Heart is good, daddy."

Big Day

Bela and I had an especially good day today, bonding. SHE BREASTFED!!! THREE TIMES! I was so excited I told everyone who walked in to the room and teared up about it (I didn't give any demonstrations, though, so don't worry).  This is a really big deal. It means we can bond better, I don't have to pump as much, and when she come home I won't have to solely bottle feed her nor buy formula! It is also healthier for her and me!  We had tried three times before today, last week, and she just wasn't having it. But today, thank God, she did it!  When the Occupational Therapist came, because Bela's sole occupation is to breastfeed, she counted the minutes that Bela fed. In 9 minutes she took 36 ccs, a little ambitious she said, so they made me cut back to 6 minutes the next time (whatever, there's no camara's in our room!) But seriously, I obeyed because I don't want her to take any steps back at this point. TheGI team doesn't want to risk her belly getting big again.

Another huge deal today was that I got to give her her first bath. Beto and I got to sponge bathe her once before, but today the nurse actually helped me and I got to wash her hair too.  This was something that I complained about doing when Santi was a baby but now I realize how wonderful it is to be able to take care of my baby like this. 

Last night I arrived at 10:30 and fell asleep right away. I didn't wake up at all until 6:30 this morning! And then I went back to sleep for another hour! The nurse did give her Morphine last night before I arrived because she seemed very uncomfortable (Bela, not the nurse). But in the past even with Morphine she doesn't sleep that well. She and I both really needed it!

We found out today that her preliminary liver biopsy results are negative but they sent the liver sample to an outside lab and the more detailed results won't be back for about 2 weeks. Her bone marrow biopsy showed evidence of only 1% of mega carrier blasts, which basically means remission, but they will still continue with the plan for chemo. At least they won't have to increase the chemo.  They did NOT do a lumbar puncture after all. One of the oncologists took the option to do it before her next round of chemo begins, which I don't understand. I wish they'd just done it while she was under anasthesia but the dr. today didn't know why the dr. who was on call last week did it that way.  

We thought she would get to come home for about 48 hours before her next round starts, but since her body took longer than expected to recover from the first round and because they want to get started right away, they will keep her there and probably start the next round before next week.  But that's ok. I was pretty nervous about having to flush her line twice a day anyways at home.

Notice anything different about this picture?  NO MACHINES TURNED ON!!! 

She's only on milk!

Not a real smile, a "pooping smile".

waving

After her bath!

Obviously having a good dream

Endeavor

2 cute little fellahs

Passing the time

Santi with the captain

Our view of LBC from the Queen Mary

Entering the ship

Pelican

Santi and Bobby's feet running to the top deck

There were people on roofs all over the place

"Byyyy Buddyyyy....hope ya find your daaaadd!"

Beto got some good pictures even with the sun in the way.

The best picture we could get. It went faster than we expected. Imagine that! It's a jet!

Find the creeper




We had a great time getting to watch history yesterday .  We heard that the space shuttle Endeavor would be doing a "flyover" SoCal on it's way to it's final landing at LAX on the back of a 747.  The historic ship the Queen Mary gave free entry to everyone saying "Endeavor" as they entered.  We were told the flyover would take place around 11:30 at the latest, so we arrived around 9:30 and got a good parking place and a great view on the deck.  There were a lot of people still arriving but I was surprised there weren't actually more.  But by around 1pm when the plane really did fly over there was a major traffic jam in the parking lot of people still arriving!! They were definately on California time.  I also think that the Queen Mary staff wasn't quite prepared for such a large turnout.  We could tell that the Endeavor was arriving even though we couldn't see it because of the people's reactions who could see it.  We were on the front of the ship and the plane came up from the back.  It was like seeing a crowd do the wave at a baseball game.  The people who saw it first starting pointing and using their camaras and slowly those movements trickled through the rest of the crowd. Then when everyone realized it would pass on the opposite side, that wave of people moved steadily in unison to the other side.  Afterwards it was another even altogether to get out of the parking lot that had only three lanes at one exit site.  It only took about 30 minutes though to get out instead of the 2 hours I'd predicted.  But there was more than one fenderbender and a lot of angry, yelling drivers! So exciting to have watched history with you all!!!  I just wish Bela could've been there. I think one of the hardest parts for me of having her in the hospital is that it's just not normal, obviously.  Instead of having her with us, she had to be alone (well, the nurses are awesome) for those 4 hours while we were all gone.  And we have to take turns being with her so someone else can be at home with Santi and do the chores, whereas if she were home she could be playing on the floor with Santi while I do laundry,etc.  I know we will have that luxury soon. We thank you for all of your prayers.  We know this has been a rollercoaster and will continue to be, but we could'nt have done it without all of the prayer support.