Bela's checkup

Fell asleep like this on Glenda for two hours! I think that might be the longest nap she's EVER taken!

On Monday our good friends Christa and her boys Roman and Levi came  up and we (minus Bela) all went to the Long Beach Aquarium together for the day. Christa had a cold. we don't make all our guests wear masks.

Roman (L) and Levi.  They are such great kids and we all had so much fun!!!

Lovin on daddy

with her Ya-ya and favorite glow worm

Bela had her first check up today since she's been home.  She's doing great!  Dr. Z was very happy with her progress.  Her blood counts are all going up and have a ways to go but they are where they are expected to be for now. She is almost in the 50th percentile for her weight now and she's starting to grow some hair back:  her eyelashes, her eyebrows, and on her scalp.  In just the right light you can see that she has a darker scalp now that looks like what a boys scalp looks like right after he shaves it real close. Since her immune system is still compromised, we can't take her out to crowded places but we can go on walks and to the park.    She is scheduled to have her next check up next week.  She still has a bad patch of ringworm on her cheek that has spread a little to her forehead but that should clear up as her immune system improves.  

A picnic at home

Santi loves front yard picnics

Snuggle!

loves it outside

four teeth on top, two coming in, and two on the bottom!

Questions

Man so many kids are dying of cancer.  Seems like everyday I find out on facebook of at least one, and I know there's more.  Sometimes I just have to pull myself away because there are literally thousands of facebook pages now set up to follow the journey of all of these kids.

I know that this is nothing too new, but so we just find out more about these cases because of social media?  And I know cancer is not the only disease or way that children die.  And I know that everyday thousands of people die.  Which leads me to think, maybe death isn't something to be surprised at?  Yes it's horrible to lose a child and very sad for anyone to lose a loved one, no mater what age.  But in other countries death is more common place.  People know it's just a fact of life and they don't seem as shocked by it, or at least not as shocked at what we in western culture may be shocked at.

God never promised us tomorrow, nor a life without pain and sorrow.
 
Beto and I were just talking today about how since Bela was diagnosed we seem to know exponentially more families with a child who has cancer. Well, before, we knew only one. Are we just more aware, more sensitive, paying more attention, or all of the above?  For people in professions that see sickness and death everyday, is this the path their thinking takes? I don't know. I'm just thinking "outloud" tonight some things that have been on my heart and wondering you thoughts?

Before Bela was diagnosed I have to be honest I hadn't really suffered anything so traumatic.  I know I am blessed to have lived a good 33 years without anything quite so devastating. I know this probably isn't the norm and many people have had their eyes open to suffering much ealier.

But, to end with the Truth:  Jesus has OVERCOME!  He is our peace.  Our comfort. 

Half-Marathon Proof

Beto finished about 40 min before me.  He's a natural runner!

We did finish our half-marathon on Jan.20.  We ran with Team in Training to raise money for the Leukemia/Lymphoma Society.  Together Beto and I raised just under $10,000, so thank you to all who donated!  We got to stay at the Anaheim Sheraton with other team mates and attended the TNT pre-race dinner the night before. That was very inspiring...we ate dinner with about 500 other participants, most of whom have survived a blood cancer or know someone who had or has it.  we got to hear from a sister of someone who passed away from cancer recently.  Hearing her story reminded us all of why we had trained and why we worked to raise funds for a cure, and why we were about to run 13.1 miles!  These pictures were taken by friends and sent to us last week.  The race started at 5am and we first ran through Disneyland so everyone would be finished and so the park could open at its regular time.  We woke up at 2am to get ready because we had to meet our team in the hotel lobby at 3am, then walked to the starting line where we checked some things to pick up after the race and then found our starting line.  There we waited about an hour for the race to start. It was nice to be done around 9am before it got too hot.  It was great that the race wasn't one week earlier when temps would've been in the 40's here in LA at 3am!

Post race.  Right here all I was thinking was ..."shower.sit.eat.sleep" in that order.

Pre-race was fun. We were all anxious but ready.

Beto running through the cheer tunnel  to the pre-race dinner.

The cheer tunnel was amazing!

Disneyland around 5:30am filled only with runners and employees.

CANCER SUCKS!!!

Today Beto and I attended the funeral of a six year old boy who recently passed away from cancer.

 It was horrible and wonderful and beautiful.  The family's minister spoke a beautiful sermon and the flowers and music were beautiful.  There wasn't a dry eye in the church, especially when they played the slide-show of his life with a song about being gone too soon.

 I cried the whole two hours.  I don't know exactly what it's like to lose a child but I know what it's like to see your child suffer so much with cancer.  He had a different kind of cancer than Bela. I just kept thinking that there are too many children today dying of this horrible disease and it made me angry! And as the preacher said, we don't have all of the answers. We don't understand why some have to die so young and why others survive and thrive. And it could've been Bela. It could've been any of our kids, or any of us. None of us know when our last day will be.  Two years ago I know this family could not, and did not, imagine that today they would be burying their middle child, their little boy.

It reminded me again to really live each day fully and with lots of love, to love and love and love on my kids and all my loved ones with lots of hugs and kisses and laughter.

Please pray for this beautiful family who's hurting so much right now. I have tried but I cannot imagine exactly what they are feeling or what it would be like to be in their shoes.  But I know that they are believers and God is comforting them.  

The glory of God at a park

We went to the park today.  Just me and Santi and Bela. We weren't planning on going to the park but we live just two blocks away and Santi wanted to go.  Bela and I hung out on the grass.
  It was so perfect, simple, and beautiful I almost cried.  This "normal" thing for most people is truly a miracle for us.
Bela loved the grass. I wasn't prepared and didn't take my camera.  She loves to look around, at people, at the trees, the cars, everything. She's very observant.  When the gentle breeze blows [her one tuft of hair], I notice it and think how wonderful that Bela is getting to experience that now.  Things I wouldn't have ever thought of before nor would have enjoyed so much are causes for huge smiles now.

We are settling in and adjusting now.  It's so strange how all of a sudden, overnight, our lives change dramatically once again, and all without much fanfare. I mean, how do you sum up seven months of childhood cancer?  It's like one of those "life events" such as a wedding, graduation, or funeral where afterwards, things are very very different and yet life goes on.

I think, though, that this is how God made us: to be able to not just survive such a huge event, but come out stronger and wiser and yet still able to take on "the mundain" everyday tasks. How in awe I am that Jesus was born in a stable; The Glory of God surrounded by people just going about their lives.  I'd expect more...I don't know...more of a "party-like" atmosphere at home and all around me.  I mean, my child IS CANCER FREE!!! WHY DO I EVEN CARE ABOUT FOLDING CLOTHES RIGHT NOW???!!!  but at home we are just living....we wake up, brush our teeth, have breakfast and before we know it it's time for dinner. Where did the time go? What the heck did we even do today? I know I didn't sit down except to feed the baby.  Oh yea, I sanitized all of Bela's toys...again.  I fed and clothed and cleaned my two kids, myself, my husband (he's self-cleaning though), made meals, cleaned the kitchen, tidied up the house, made some "business-like" calls to the doctors and the insurance agency, took pictures, uploaded them, blogged, got distracted on facebook, and the list goes on and on.  But the Glory of God is always with us and around us.  Let's. just. not. miss. it.

Inside of each of us in our family we feel celebratory. I wasn't able to attend Bela's "going away party" last Friday at the hospital when she was discharged. I was fighting a small cold and I was sooo disappointed.  I'd looked forward to that day for seven months!  There was so much built up, anticipated.  I'd dreamed about that day many many times, and then to not be there, I feel like I didn't get closure.  But I know that the hospital staff will forever be a part of our extended family.

We are getting used to all being home together and taking care of two kids at once. The toughest thing I'd say so far is BEDTIME!!! So far we've tried to stick to a schedule. Usually one of us puts Bela to sleep pretty quickly around 7 while the other one gets Santi ready for bed. On a good night the both of them are sound asleep no later than 9.  

Bela isn't sleeping as well as she was in the hospital, or we just notice how much she wakes up since they're aren't any nurses here to take care of her at night.  She seems to be adjusting to her new bed and surroundings.  I wonder if it's just too quiet here, she is so used to the background noise of the hospital: talking in the hallway, IV machines beeping, getting all her vitals taken, etc.

Beto and I are also getting used to sleeping in the same bed every night, not just Wednesdays when either Christa Johnson or her mom Nuggest would spend the night with Bela.  We thank them for their sacrificial service!

We still feel overwhelmed with gratitude to everyone for all they have done for us and Bela. Especially the prayers. I can't say it enough how humbled we feel to know that we are indebted to so many people, known and unknown to us, for saving Bela's life. Above all God and His Son Jesus we know healed Bela, but He also used literally thousands of prayer warriors and it has made all the difference. 

Showing off his soccer uniform from Tio Seth

Ready to go for our walk.

Santi's self-portrait

Also taken by santi. Bela reminds me of a cartoon character but I can't put my finger on it.

The end of a chapter

It's hard to believe that Bela's home already...surreal.  WE are very blessed that she was in the hospital for "only" seven months.  Depending on the patient and the type of cancer they have, some kids receive chemo for a few years.  

Even though there were times in the past seven months when time moved as slow as molasses and we thought we'd explode if we had to wait any longer, the time went fast too. 

Obviously we are overjoyed that she's home and don't ever want her to have to be in a hospital ever again, but we are also getting used to being home. We do miss the wonderful staff at the hospital and her friends who are patients. We are finally learning what it's like to be parents to two children...who are home all the time, at the SAME time. 

We are relieved and excited to start this next new "normal" chapter in our lives.  Bela still will have to visit the doctor at least once a month for at least six months to get blood drawn and watch her counts.  She won't have her Broviac in her chest taken out for about 6-12 months, I believe, so there is still cause to pray against infection. Beto and I will have to clean the tubing with heparin every day and change the dressing over it once a week. 

Thanks to everyone for all of your concern, compassion, care, prayers, and love. We certainly wouldn't have gotten through these past 7 months without you all.  We thank and praise God for His healing!

So happy to be home!

Waiting for Bela to get in the house!

Bela's home forever!

Baby food face

"Painted" by daddy

Wearing fun new clothes

Starting to push up, might be crawling soon.

Tea Party with the set the hospital gave her at her "going away party"

Family Time

Praying for an upward trend of "counts"

Sorry for not writing in so long. Just happened across another blog about another girl with Leukemia and there is nearly a post for everyday. I wish now that I had posted SOMETHING and a picture everyday, but alas, I am not like some other people. Sometimes I am just too tired or just don't want to share scary, ugly pictures of my child that would make you squirm.
But here is an update I can tell you about, and this will be news to you if you're not following us on "the facebook".  She still has all of her blood counts at zero, basically. She needed another platelet and blood transfusion within the last 48 hours.

Banging her hand down, she screemed, "I WANT MORE BEANS!" 

YUP, Feeding herself already.

I guess this means I broke my vow to not put up pictures that might make you squirm.

Bela feels great. We can tell this by all the smiles and laughs and dances she gives us. She has started to eat rice cereal and tonight: GREEN BEANS! for the first time! She loved them! My sister Glenda got to feed her and she took all the pictures.

As you can see Bela is bald. She was born with a ton of hair.  The large red patch on the left side of her face is Ringworm, the doctors think. They're giving her an anti-fungal cream which doesn't seem to be helping.  When her blood counts go up and she gets more immunity, the ringworm should go away.

She loves to play in her bouncy chair and has started to sit up by herself. She keeps all of her food down and didn't have any blood in her stool this afternoon. She's not in isolation anymore and she loves walking the hall and going to the playroom.

The Occupational Therapist came in today to work with her on her gross motor skills. She is a little behind since she's not crawling yet, but honestly, the girl gets held all the time!  So we need Bela to be on her tummy more. I didn't think about it today but I wonder if Bela thinks that her Broviac is part of her body. She's had it since she was one month old.  I worry that it hurts her when she's on her stomach but the therapist said it shouldn't be a problem.  She has shown some progress towards crawling with her leg movements but her arms and core need to get stronger so she can start doing her push-ups with Santi.

Her counts have taken the longest this time out of all of her "rounds".The chemo from the other rounds is catching up to her. I had predicted, based on the last two rounds of chemo, that she'd be out of the hospital by Jan. 20th or so.  But honestly I am feeling bittersweet about her departure. This is just giving us more time with all of her "aunts and uncles" who take care of her.  She doesn't know any different. For her it's her home.

She has made a wonderful new friend in another patient and all I can say is they play together everyday and have a lot of fun together!

Thanks for all of your prayers! As I look back sometimes over old posts I remember where she used to be and how far God has brought her, and we look forward to never taking another day for granted and how healthy she will be in a year from now when I look back on this post.