Celebrating the Good, In the Midst of the Bad

This little girl is strong! She captured our hearts from the second we saw those two pink lines.... and she continues to every single day. She's hilarious... a HUGE personality.... and she's going to do something BIG in the world.... no doubt about it!

 

 

I find it crazy that I draw strength from her strength.... and I find positivity in our new life of never-ending treatments, in HER positivity about these treatments....and even though every time I look in those big brown eyes.... I have to force myself to keep it together.... I do it (mostly).... for her! She needs a strong mommy right now...so that's what she'll get!

 

It is still definitely sinking in....that these treatments are a permanent fixture for us....and for her. Typically with illness, your treatments are a few weeks, months maybe.... it really is hard to grasp the reality that we are in.

 

We are encouraged by the progress we have seen in her cough and other symptoms.... but I am very burdened and disappointed to report that the $7000 "super drug" is so entangled in red tape... that my sweetie, now two weeks later, has not received it. Every day it's a new hoop to jump through....and it's left me feeling more helpless than I have ever felt before. I've always been of the mindset that "nice wins"....and each day that I've called, I've tried to kill them with kindness, thinking somehow this might move things along and help us get her this drug... unfortunately, after two weeks....today I had to let my desperation be known (in the most polite way I knew how) and I THINK (fingers crossed... toes too!) that I may have gotten somewhere!

 

Please, please, please pray with me that we get this medicine WEDNESDAY! They are projecting that as the date! I'm not sure how much longer we can wait otherwise!

 

If I could turn back the hands of time, I would a million times! I thought long and hard about getting her another primary insurance policy (with prescription coverage) at the same time we did Kenton in December.... but ultimately decided, I was over-reacting... letting my worry creep in too much.... and since we really did not think we would be living this nightmare.... we decided to just get it for Kenton. A big mistake I now know... and one I will get the pleasure of reliving over and over until we can get her the right insurance coverage in place. I'm afraid it will be a very long 8 months.

 

We have had some pretty exciting things to celebrate the last week or so! We participated in our first Cystic Fibrosis Great Strides walk... and had over 60 of our family and friends come to show their support... many that traveled several hours to join us. I never remember a time where I have felt more loved. It truly lifted our spirits and reminded us of the amazing support that God has placed in our lives!!





We raised about $7500 for the cause in just the short few days we had before the walk! Fundraising is so very important.... many believe that we could possibly see more "miracle drugs" for CF victims in this lifetime....possibly even a cure....and I am ready to do my part to raise awareness in any way I can! It's our best attempt at turning our lemons in to lemonade!

                 

Many of you that know me well, know that God brought the most unexpected of business opportunities in to my life about one year before my life got really crazy.....and 28 days before our world was rocked with this diagnosis for our sweetie... my twin sister and I became Executives with this company. Little did I know that the weight loss and energy these products have brought to my life, would become secondary to what the business would do for my family. My husband has an amazing job....and is a wonderful provider for our family.... I never want to take anything away from that....but his income was used for all of our EXPECTEDS..... the financial blows that the UNEXPECTEDS have brought in to our lives, could have been devastating without my income as well. But God had our story written long before we did. He knew what we needed before we did....and he provided for us....in the most unconventional of ways..... as he ALWAYS does.

This company has brought the most amazing people in to our lives..... people who pray for us, organize meal trains, donate products that my daughter desperately needs for her immunity, and it continues to just amaze me.

Today, I was snuggled on the couch with Kambree doing a treatment.... and we were covered in a blanket with my company's logo on it....and she said, "Mommy, are you so glad that you are an "X" girl?" (something she has called me since I started)...and it brought me to instant tears... because I am.... sooooo very, very, very glad.... that God brought this into my life....at just the right time. I was snuggled with my new blanket.... almost like a child with their "security blanket".... and it struck me...our true security, of course, lies with our trust in God, but I could not help but think how much earthly security this company has brought in to our lives.

Without it, our lives would be so much different. I'd likely be eating myself into a severe depression.....and then I'd be sleeping to avoid the reality that I'm in. I wouldn't have nearly the number of friends and support that I have now... friends that are truly more like family.... lifting me up every single day. Sending me encouraging scriptures through text.... organizing prayer luncheons, singing praise songs to me over the phone, reminding me just how awesome our God is.  I shudder to think how much debt we could have accumulated with all of our medical expenses.

Initially it felt weird, and I had to stretch myself... but I said YES... and this company has changed my life in so many incredible ways. It's going to allow us to provide for our children in ways we may have struggled before. This company is going to allow us to GIVE in ways I could never have imagined previously. I've got a running list of ways I want to bless people---and as soon as we can get our kids squared away, I can't wait to see how God will use this and me next! He has expanded our circle of influence a hundred times over....and we have so many people we can now lead....and love....and serve.... and there is really no job more gratifying that that.

This blog is about the WHOLE White World....and I don't for one second want to let Cystic Fibrosis define our entire lives! It's a sad part of it....a heart breaking part of it... and one that has left a lump in my throat for about 3 weeks now (who's counting?)....BUT there are a lot of WONDERFUL things in our lives too..... and we will most certainly celebrate the good, while we are dealing with the bad!

Danielle and I got the privilege of presenting at our convention this past weekend....and we created a video to show how much our lives have changed since we began our Xyngular journey in April of 2012..... our husbands and kids even participated in the fun with some messages we included.

Watch it....and cry HAPPY tears with me for a change.... because I think you will be able to tell from the video.... that this is a HUGE source of happiness in my life! Our stories have all been written.... we just have to live them out... and this part of my story, has been a pretty amazing one to live!

Changed Lives

Love you all... that's it for now..... I'll keep you posted on the arrival of the meds!

XOXO
Deanna :)

One Week Down

Today marks one week from our hospital visit. This week has had it's share of happy times....and not so happy times.

Kambree is adjusting fabulously to her "new routine"....although it started out a little rough.

There was lots of negotiating and begging.... "Just let me have my cough". It was very hard to convey to her, just how important the treatments were, without scaring her....but the last few days, she seems to have settled in. The treatments are taking around an hour twice a day.... which may not seem like much.... but man, it is!

 

 

This weekend we got to watch her "Rock Around the Clock" at her first dance recital.... and it was about the sweetest thing ever. I watched her smiling so big, front and center....and just kept asking myself how it can be, that such a vibrant, seemingly healthy little girl, could be so sick.

What could be better than that??? One thing, for sure. Seeing her get baptized. A few months back, Kambree prayed to ask Jesus to live in her heart, it was beautiful..... and truly the definition of JOY for me. She was asking a lot of questions about baptism, and decided it was time to show the world, that she was " a NEW girl". Jason got the privelege of baptizing her, and it was perfect! A perfectly timed, perfect event, to remind us where our ultimate peace and hope from.

 

 

An all around beautiful Sunday, was followed by a pretty darn awful Monday. I was sitting in Martial Arts class with my kiddos...when I got a call from a now-familiar Kansas City number. It was Kambree's doctor, calling to let us know that they got the results back from her culture, and that Kambree has two different lung infections. She said, we were now in "rescue mode" as these infections would slowly destroy her lungs. She added 3 more prescriptions to aggressively treat the infection..... 2 in pill from (she has finally learned to swallow them, and is shopping for a new Barbie with Daddy as I type this, as a bribe....errrr, reward! ;)) The non pill antibiotic, has caused us some major panic.... unfortunately, until December 1, when the national health care program opens up their enrollment, Kambree is without prescription coverage. Up until the need for this inhaled drug arose, our script costs had been minimal.... the cost for the new drug..... wait for it......

 

$7,000.00 a month.  A MONTH!

 

 

When we had the scare with Kenton, we got him another primary  policy set up, for this very reason. We were informed that prescriptions for CF could be thousands and thousands a month, so we were proactive.... secured him another policy, and now, my son is sitting pretty.

 

BUT, as it turns out, BIG SIS is the one that desperately needs the additional policy... and we missed the open enrollment period by a month..... open enrollment closed on March 31.... we got her diagnosis on April 28th. I've called... I've begged, I've pleaded for an exception... they do exist for some, and there is a qualification process.... unfortunately, her new diagnosis doesn't qualify her. If she were to get married, we'd be golden..... but receive an earth shattering diagnosis..... no go.  (I'll remove my snark now.) If we were to drop her from our family coverage (which is quite awesome coverage, with the exception of the lack prescription coverage), we MIGHT qualify.... but there is no way we can drop her, on the governments word that they MIGHT agree to an exception if that occurred.

 

So here's the good news... I've made you sweat long enough. Due to our situation, there is a very good chance that the company who makes this LIQUID GOLD LACED WITH DIAMONDS prescription... has agreed to gifting us the first two months. We still don't have it in our hands, and are going through the process, but after another conversation with our CF team at CM... they are VERY confident, it's taken care of. Will you pray with us, that this comes to pass....and SOON. Kambree desperately needs this medication.... and no dollar amount in the world will stop us from getting it for her!

 

 

It is possible that after 2 months on this medication, she won't need as a daily part of her routine..... some do, some don't..... so for now, we are taking it one step at a time. We do know there are other resources, grants, etc.... to help folks like us in these nightmare-ish situations..... and we are very encouraged by the fact that we know we can get her another policy, with amazing benefits, in 8 months..... lucky for us, they are not allowed to take pre-existing conditions in to account.... so the rate they offer us, will be based of her age and gender alone. Whew!

 

We are in a deep valley right now...no doubt. I've seen other moms walk similar roads....admired their strength from afar, read their blogs, and had often wondered, how I would hold up in a situation like this.  Would I be angry? Feel forsaken?

 

I'm neither. I just can't be mad at God. When I look back at my life, he has blessed me with FAR more happy, overjoyed, cup spilling over moments, than heartbreaking ones.... and I know, without a shadow of a doubt, that God has a plan for each of us. He knows how this ends. He hears my desperate pleas to take this all away. He's heard me begging him to breathe new life into my little girls lungs....and I know he has the power to do it....but that doesn't mean he will.  

 

 He is the giver of life..... he is the taker of life. The road in front of us is very steep, and I know will have a lot of heartache along the way... but He has surrounded us with so many friends and family to help carry the burden, and He himself is with us, living in us, and now living in her!  

 

Please continue to pray for us:

1. Pray that we will get this new medicine.... QUICKLY.... and affordably!

2. Pray that it works like a charm.... and rids her of all infections!

3. Pray for my family! Kambree is not just a daughter to Jason and I... she is a granddaughter, a niece, a cousin, and a friend to many. While they all feel the need to be strong for us... I know they are hurting deeply.

4. Pray with us for a CURE. This is a horrible disease, and they have made significant gains on life expectancy due to funding raised by the loved ones affected. They have new medications that are supposed to be "miracle workers"... they are learning so much, but this all takes money. We are participating in the Cystic Fibrosis Great Strides walk this Saturday---in Kambree's honor.... as White's Warriors. We would be honored if any of you wanted to contribute $5 or $10 to finding a cure!  Ultimately, that is what Kambree will need....without that, all of our attempts are truly just to improve the quality of life and prolong it as best we can!  Here is the link: http://fightcf.cff.org/site/TR/GreatStrides/58_Heart_of_America_Kansas_City?team_id=26177&pg=team&fr_id=2101

5. My sweet, sweet grandma passed away Monday night... making a bad day, 100x worse. She hadn't been in her usual amazing health for several months, but this still came as a big blow to the family. She is going to be greatly missed. Kambree took the news very hard! We will lay her to rest on Friday.

 

 

Thank you all, so very much for your support. Two tired and weary parents, are lifted up by your sweet comments, cards, food, and so much more!

 

XOXO

Deanna :)



 

 

 

 







It's Sinking In...

Unfortunately, I haven't woken up from this bad dream, so each day, I seem to be accepting it more... not liking it any more.... but settling in to the situation. We have so much to learn. We are no doubt overwhelmed, but we are blessed beyond measure with amazing friends and family who have showered us with support, prayers, meals, phone calls, cards, and flowers----and we have a Savior, who whispers in our ears daily, that He loves her. He loves us. He is with us. This is news to us, but not to him. He knit her together in my womb. We are in a valley now, but we've been on many mountain tops.... and we will continue to praise him in BOTH.

Shortly after my blog on Tuesday, I got the call with details on our next step. We had an appointment at Children's Mercy yesterday. They encouraged us to bring support people, and my parents were able to arrange to join us. We hadn't told Kambree much more than that we were going to the hospital where we take bubba, and going to have to figure out how to help her with her cough. She was pretty disappointed to not be hanging out with cousins like bub and sis got to, but a trip to the movie store with daddy for some traveling entertainment, and a sweet goodie bag from her cousins perked her right up.

The appointment went something like this....

Doctor comes in... introduces herself, Kambree introduces all of us.

Doctor sits down. Says, "We all know why we're here, right? Does she (Kambree), know why we're here?" 

I say something about a cough, honestly, not sure what came out, and she proceeds.

"Cystic Fibrosis is a life-shortening disease..."

and I am scrambling for my iPad for some quick distraction for Kambree.

She goes on to describe the disease, says we need to assess her current condition, and figure out how we can best treat her to give her the best quality of life.... to prolong her life.

So as it turns out, all my time googling "false positives on sweat chloride tests" was surely wasted. There was no discussion of alternate possibilities. No discussion of IF. Just the facts. Our daughter has Cystic Fibrosis. 

It is so surreal still at this point. All of the anguish, praying, blogging..... I did about the fears of my son.... and then BAM! A quick test at St. Francis on Monday morning.... and definitive answers that will forever change our lives just hours later. If this was to be the outcome, I will say, I am grateful it didn't turn in to month's of waiting and wondering. We did the test....and got the shocking news.

Back to the appointment.

Initially, the doctor thought we would start with one treatment, and gradually add on things to allow us and her time to adapt to the new routines. After assessing her further, she decided we needed to be more aggressive, and so for now, we have 3 different treatments to do twice daily.

Over the course of the appointment, they taught us each "treatment" and instantly it started working--by working, I mean loosening the mucous, to where she could get it out. The coughing became almost constant and (pardon the tmi) they taught her how to get it out.... and she spent the entire 3.5 hours we were there, coughing up, horrible mucous and spitting it out. (this continued in the car ride home, in the middle of the night, and is still going!)

That was honestly the worst part of the day.... watching her coughing and spitting, over and over again. The doctor was a little alarmed by some of the stuff we saw coming out of her sweet little body....but was proud of her for catching on so quickly on how to get it out. Some of the mucous is being sent for testing for a certain bacteria that we are praying is not found. If it is found, another treatment will be added to our daily routine.

With all of the mucous she has been carrying around, it is really amazing that she has not been getting infections. The mucous can trap bacteria, lead to infections, etc... and my sweet girl hasn't been on a prescription for illness for well over a year, when we added a "shot of super juice" to her daily routine, and I have no doubt in my mind, the immunity support and anti-inflammatory benefits from that product, has kept her healthy. When we told her today, she could have as many shots of "super juice" and Xypstix as she pleased, she was downright giddy!

Her lung function test was "disappointing" she said (although we felt as though she may have been a little embarrassed and not really showing what she was capable of..time will tell). We are really hoping for some improvement here next month.

Based off of the coughing and lung function test, we were all a little concerned about what the x-ray of her lungs would show.... but I am so very happy to report.... the doctor said she was "pleasantly surprised". She did see some minimal damage, that she explained is permanent, but based off of her observations from the rest of the appointment, she was afraid it would have been much worse. I asked if her lungs looked "typical" of a 7 year old with CF considering her lack of treatments thus far, and she said she'd put her in the middle. She's seen better, she has seen worse.

So we will celebrate that they weren't worse! That was a huge weight lifted. We will also celebrate the fact that CF is currently not affecting Kambree's growth. Many (90%) with CF suffer from malnutrition and have to take enzymes with every meal. She seems to be thriving in that regard. We are awaiting results from a nutrition standpoint to confirm this, but assuming they don't show anything of concern, Kambree will not have to go on any enzymes or adjust her diet at all at this time. Praise the Lord!

We finished up the appointment by drawing blood (daddy got to take her for that :( ) and it (and the stool sample and mucous) have been sent off to test for a variety of things. The results from all of this will trickle in over the next few weeks....and will tell us more. (the specific mutations she has, whether she has any nutritional deficiencies, whether her pancreas is functioning properly, whether there is bacteria in her mucous, etc.)

We met so many people yesterday... a whole team of CF experts ready to help us with every aspect of this journey.... and for that, we are so thankful.

Please pray with us about the following things.

1. We've been told that sweet little Kreslee needs to have her sweat test ASAP. I can't even bring myself to make the call to get this scheduled, because I am just beside myself with fear. I don't see any symptoms in her, but until that phone rings with happy news a few hours later, I will be a wreck.

2. Pray that there is no bacteria in her mucous. This would mean adding another treatment to our new daily regimen.

3. Pray that her pancreas is functioning properly, and that dietary changes won't be necessary at this time.

4. I feel that my weeks are already a blur with Kenton's therapies, and adding more to my plate is hard for me to comprehend at this point. Her treatments will take 30 minutes to an hour (today was just under) to complete.... twice daily. Then the cleaning and sterilizing of the equipment will take time too. I know we will adjust, and it will all get done... it has to....but pray that our transition in to this life altering condition is as smooth as possible.

5. At her appointment next month, we will be discussing the need for the "vest". This is a common piece of medical equipment for CF patients.. you wear it a certain time period during the day, and it helps to loosen the mucous, etc..  sometimes insurance companies can be uncooperative in assisting with this.... and the vests are around $15,000. I've spoken with our insurance company about our policy, and the lady felt it was promising that it would be partially covered at least.... so pray that if and when this is necessary for Kambree, that it is not a struggle to get it covered.

6. We have several upcoming appointments for both Kenton and Kambree..... enough to make your head spin..... just pray with us that these go well, and there are no more hidden surprises for the White crew. (Kenton--May 6, gastrointestinal dr in Wichita, Kambree--May 28, CF follow up, Kenton--June 17, pediatric neurologist at CM, Kenton-- July 21, asthma follow up at CM... and I'm sure Kambree will have more appointments as well)

7. Pray for my husband. It's hard work having to be "the tough one".... and I know watching his little princess struggle....and worrying about me, takes a toll on him.

It is so hard to watch your child suffer. It is so hard to feel like there is a "secret" we are keeping from her. It is so hard to know that you have passed a "life-shortening" disease on to your child. It is so hard to focus on TODAY and not let your mind wander about how this ends... but we have to.
We have to be strong... put on our "brave faces" like we tell our children to do...and put one foot in front of the next, over and over again.

I can't thank you enough for your support. Thank you especially if you made it all the way through this one... it was long I know... but what can I say... I have a lot on my mind.

Love to you all from The Whites!