The Truth 365: Be the Voice for Children by Watching and Sharing this Film

This is difficult to watch but very important. Please watch from at least minute 39 if you don't have time to watch all of it. Thanks.

The Spirituality of an Onion

You know, it's funny...(not funny "haha"), that my child had cancer. That's not a typo...she does NOT have cancer, she HAD it.  Be warned , these thoughts came to me around 2am this morning while caring for her here in the hospital. I think of my spirituality as an onion. Yes, I know for you Shrek fans out there this may shound familiar. Nothing like exhaustion to make you think of spirituality and Shrek at the same time.

When we first learned Bela was sick we were told that "it's amazing what you can get used to." After the shock of the news of her having Leukemia wore off, we got used to the waiting...then she kept getting sicker and sicker, we didn't like it, but it wasn't so shocking anymore. Then she started getting "better".  Diahrea, vominting, fevers and a feeding tube became just part of our lives. When we first started on this journey, I have to admit, I was on the very outermost layer of the spiritual onion.

Of course, when tragedy struck, I quickly upgraded to the inner most circle of trust within my relationship with God. As Bela started to get better, looking back I realize that I prayed less, read my Bible less, and just accepted as"normal" whatever would happen to her as a result of her chemo.  Then she would go back into the hospital after being home for two weeks and we'd start all over again. ";Please God just let her live, "I'd beg" . Back to the center ring of the onion. But really, should we ever get "used to" our trials? Should we only be at "the center of the spiritual onion" when someone we love is suffering or on their death bed?

 I realized for many of you out there I'm "preaching to the choir". Why is that? How in the world can I be toward the outer ring because "oh, Bela's fine..she just has a little infection...blood in the stool, no immune system at all, in isolation..." and I spend less time praying and studying the Bible. Only when she can't sleep at night, she's fussy, has fevers, oxygen...the "really bad stuff" she had at the beginning...I'm comparing...Our trials become leveled..."Well, she's sick in a hopsital bed with Leukemia, but she's not as bad as she was 5 months ago!!! She'll be fiiiiiiiiine". 


 I am reminded everyday that there are some families who are not rejoicing over the healing of their child right now. There are two patients that I know of that may have to be transfered to the PICU, which means the child has digressed to such a critical state that the doctors on this floor cannot do anything more for him/her at this point. 

Bela had to go to the PICU twice, the first time for just a couple of days, but the second time for one week.  Praise God that He healed her.  I don't ever want to forget how close we came to losing her. I've learned that every day is a gift. We don't ever want to be further from God just because everything is "hunky dory". 

But what about those families who's children aren't healed? For whom there is no miracle? Is it just the way of life, as it has been for centuries? How do those families reconcile their child's death with their faith? I don't know. I've not been in that situation. I don't have an answer, but all I can say is that
I am so grateful to God for healing Bela and that she gets better everyday. However, I know we came so close to that not being our reality and am humbled that only by His grace.

Bela will receive her 3rd(?) platelet transfusion today of this round. I've lost count of how many blood and platelet transfusions she's had since August.  They, and their donors, literally have saved her life.  I wish I could meet each of her donors and at least give them a huge hug and my words of gratitude. 

She is recovering from a C-diff infection and a cold. The C-diff causes her to have lots of loose stools, resulting in tears in the skin in her diaper area, which leads to bleeding in the stools.  The doctors aren't worried, it's all part of having c-diff.  She is eating and sleeping and playing well.  Seems like her blood counts are starting to make their upward trend.  She also has a bad "ringworm" like rash on her face and the anti-fungal cream isn't working. Hopefully today we find out if there's another couse of action the doctors can take to cure it.

Thanks again to everyone for all of their prayers!!! Your encouragment and love has gotten us through this.

May we all always stay only closest to the centermost ring of the onion.

Just when we thought we were almost done...

Bela was diagnosed with the common cold virus and a possible C-Diff infection today.  Otherwise she is doing well. She has had some high fevers but with Tylenol they usually go down quickly. She hasn't been able to keep any milk down though, so tonight she was just given Pedialyte.  Seems that even just after she eats, everything just comes out, at both ends.

Not so happy but Kelly is!

With her new friend Dean

With Sydney and Austin too

Looking at pictures of Santi

Keeping the books with the head nurse

"Get me a coffee"

The "roof" of her bed

In the playroom in one of her many donated hats

Sleeping "comfortably"?

6 month birthday pictures Jan.5,2013

Update

Bela is still doing well.  She is losing weight though, too much. She can still wear 3 month old size no problem,and she's six months now!  they aren't letting her sleep through the night anymore. Instead they wake her up every three hours to eat. And by "they" I mean her nurse because i won't be waking up every three hours to feed her, it's just not the way the good Lord intended.  Heck, she probably won't wake up either. The girl can eat in her sleep!

She finished her chemo on Thursday and so far she's not had any fevers and is not yet on any antibiotics. She has been vomiting quite a bit, which is another reason they want her to eat more frequently but less volume each time.  Other than that she plays a lot and is just a happy baby.

She will be put on a couple of preventative antibiotics soon that are given even if she doesn't have an infection, but they can't be given too close to her 8th day when she got her Bortezimab. It doesn't mix well with antibiotics.

So we are just waiting still for her counts to go down to zero and then start to climb back up again.  Thanks for all your prayers.



 

Last day of chemo but still not done

Wednesday night was a great night. Slept through the night, both Bela and I. She's been sleeping very well during this round, almost like she's not at the hospital at all.
Even though this is the last day of chemo...ever!!!...(Lord willing), this week coming up may prove to be the hardest. At least according to our experience, the week after chemo, when her counts go down and she's most prone to infections,etc. is usually the hardest, for everybody.
This morning I got to have some quiet time. What? What's that, you ask? Yes, I've been wondering lately, will I ever get to have a quiet time ever again? the other night Santi and Beto slept at the hospital and I realized I've not slept alone in my room in over 5 years!!! I'm surprised I fell asleep so quickly. But then again, it shouldn't be that surprising. Anywho I digress.

So this morning I had a wonderful quiet time and I'm continuing it by listening to Rita Springer radio on Pandora. If you've not heard of her or not heard her music, I highly suggest her for a peaceful and day changing time with God. 

This morning I read Psalm 42.  Most of you may know it as the Psalm that begins with those verses that made that one song famous: "As the deer pants for streams of water, so my soul pants for you , O God." And another song I know comes straight from verses 5 and 11: "Why are you downcast, O my soul? Why so disturbed within me? Put your hope in god, for I will yet praise Him, my Savior and my God."  The verse that I remember most though is verse 7 (the perfect number): "Deep calls to deep in the roar of your waterfalls; all your waves and breakers have swept over me."  Come all ye who are weary.  All ye who are heavy laden, broken hearted, and I will give you rest(those are some lyrics from a Springer song).  That verse has been special to me for a long time, and we'll hold onto it for a long time to come.

Please continue to pray for Bela, especially for her heart. So far, no talk of damage, but sometimes after the fourth round there's risk for heart damage. Thanks!

Happy New Year!

Well, as another year comes to a close everybody's reflecting( or maybe it's just me). I get to the end of a new year and I think a few things:
1. Where did the time go?
2. What did I do with all my time this year?
3. I'm excited about a new year.

there' s something about a fresh beginning. there's something about the beginning of each new day..the sunrise(which I hardly ever see), that smell of fresh coffee brewing, and maybe bacon and eggs cooking, or just toast and cheerios.
But especially there's so much excitement at the start of a new year. Everyone has great expectations, hopes of a new, healthier, more prosperous year, excited about what God has in store for us this year.

We were talking at home yesterday that Bela will be 6 months old this Saturday. So in the same amount of time that just passed, she will be one year already! As fast as these past 6 months flew, so will the next 6, and the next, and so on and so forth. 

Most of you can guess what we're most looking forward to this year...Bela coming home FOR GOOD, no more cancer, having two healthy children!

But you know, we sure were counting on having that this past year! So we don't know what God has in store, but we know that His grace is sufficient.
and it's scary to state that "in public", you know, because then, well, do you ever feel like if you say something like that, then God's going to test you in it? "OK, Laura", He's thinking (in my mind), "let's see if you really believe that My grace is sufficient! You think LAST year was hard???!!! Ha!"

I know that's not the truth, but sometimes I'm scared that at the end of this year, I may have reason to say, "Wow, and I thought Bela's trials were hard!  They weren't NOTHIN compared to [insert 2013's tragedy here]" 

but why think the worst? ok, so yea, the above could happen, but let's just cross that bridge when/if we come to it. And live today because that's the only day promised to us. ok, now i'm getting into cliches. 

But recently Beto and I were talking and he mentioned that he wouldn't have traded what happened to us last year for anything. Because we've met really amazing people that we would've never met any other way. And we've been blessed to the point that now we want nothing more than to go out and bless others in the same way. And now we really can say "We know exactly what you're going through" and can comfort others in the same way we've been comforted. We know what it is to be in need. We know just a little bitmore about how to pray specifically for people in similar situations. 

And we've gotten closer to God, and to each other. we've gained perspective, and we've been changed, hopefully for the better, forever to live our lives differently. This past year has changed us forever in ways we didn't think were possible.

So as I reflect I wonder what is my point? Life live to the fullest every day? Carpe Diem, seize the day, blah blah blah and all that jazz?

What have I learned this past year? That sometimes life is crappy and you don't know if you're going to make it but you have no other choice but to keep breathing and somehow time passes and you survive.

Is that all I learned in 2012?

I learned that I want to take better care of myself and my family. 
I learned that I want to slow down and make more time for God and my family.
I learned that I didn't learn as much as one might think.  It's more that I was REMINDED, in a painful way, of what I already knew but wasn't putting into practice. 

What did you learn in 2012 and what are you looking forward to in this new year?