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 :)
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