The Pill

There was an eruption in the White house tonight...
Not the usual, kind, that comes after a toy squabble, or a bath or bed time announcement.

One from a momma, who completely, 100%, lost it.

What the Facebook and Blog world don't know, is that Kambree's symptoms have all returned, full fledged. The same cough we were hearing for the 7 years prior to her diagnosis, is back. The constant hacking up of gunk, that was present during her initial treatments, but had virtually disappeared, has returned.

So what does this mean? It means MORE treatments. When possible, they'd like us to add another treatment. It means yet another medication, for 2 weeks, twice a day, and an additional trip back to Children's Mercy at the end of April, to see what's up.  It means more worry for a momma (& daddy). It means more frustration to be spending so much time of your life fighting this nasty disease... and then see a decline. It's struggling with the fact, that in moments like these, regardless of how "healthy" she seems.... and great she seems to be doing... you are smacked in the face with a reminder that your child has a life-shortening disease, that will progressively get worse.

So, back to this pill, that has been added to the routine. First, it's the size of a small dog...and tastes like something left by said dog. It  has been the source of many tears for the last week. No matter how we have sliced it, coated it, hidden it, etc.... two times a day, for the last week, we've had major meltdowns. It was like the official straw that broke the camel's back. Between treatments in one way or another, every 5 hours or so, this pesky pill was where Kambree apparently drew the line.

She's been such a trooper this past year.... had her fair share of objections to treatments, and some "why me" moments along the way... but all in all, she's adapted amazingly. This pill though... seemed to unleash all sorts of emotions. Her meltdowns leading up to taking it, have sucked the life out of me as well. I can't describe how painful it is listening to your daughter wail, begging you not to take it, and saying how much she hates CF.... how much she hates her life. It's been a knife through the heart.

Could it be 8 year old girl dramatics.... possibly... but my "mommy intuition" tells me otherwise.

Tonight.... the most amazing father (& husband) came to the rescue with an idea on "the pill" that I hadn't tried yet. And it worked. Like. A. Charm.  It still took a good 15 minutes of coaxing, but finally, she took that pill like a champ... cut in half.... and dipped in a little honey! It "slid right down" in her own words..... and she got the giggles about how "easy it was" and how "it tasted YUMMY"... and PROMISED me she'd take it from now on that way, without a fit.

And then.... she rushed to my phone, and called Aunt Nell to tell her the happy news. But Aunt Nell didn't answer... so Kambree left her a message. It was so sweet, so innocent, and ended with.... "thank you for believing in me!".... which is where I lost it.

Like totally, husband looking at me with the "who died" face, LOST IT.  I very rarely have let Kambree, see my emotion, and pray to God that I'm not ruining her in some way, by letting her see me that way... but tonight...I just couldn't control it.  I guess, the happy pill taking experience... followed by the sweetest call to my twin, was the straw that broke the camels back for ME... Kambree rushed to my lap....and sat there for a few minutes... asking me, why I was crying...and if they were happy tears, or sad tears... and I had to quickly decided if I was going to be honest, or go with the ol' "saw a sad commercial" trick..... when I could finally talk, I told her the truth. I told her my tears were both happy and sad.

I told her, they were happy because it has been such a hard week of battles at pill time.... and I was so overcome with joy, to have (seemingly, we'll see tomorrow) found a solution to the problem....and sad tears, because I hate how much of her childhood is consumed with Cystic Fibrosis. I told her how sorry I am that she has to do treatments every day and night, and now, some in the afternoon too.... and before I could say much more... she looked at me with her BIG brown eyes, and said, "Don't be sad for me, Mommy! We are going to find a cure! I'm not sad, because I know I'm not fighting alone. I have so many people that love me, and are helping us find a cure!"

BAM! She's right. We have so much to be thankful for. An amazing support system! New technology and treatments that are being developed every day, to improve her quality of life.  We can't wallow, or be sad... we don't have time. We have to stay strong, positive... and put our efforts in to things we can control about CF... like raising awareness, and raising funds... because ultimately, it's those two things ( or divine intervention) that hold the keys to that CURE she is counting on.

So that's what we'll do. Tomorrow (April 9th) is a new day. It's a day where a local restaurant, Jose Pepper's (east) has agreed to give 10% to our CF Walk Team, for any tabs that present our flyer. Wow. So awesome, and exciting-----this happens to be Kambree's FAVORITE place to eat... you have to hear her say Joooooo-seeeeeeeeee PEPPERS!!!!!!!

We also will be in awareness and funding mode for the next 3 weeks, as we have our CF Walk in Wichita on May 2. White's Warriors set a BIG goal this year.... we want to raise $15,000.... seems like a HUGE stretch....but you have to aim high, right!?!?

We are sooooo beyond grateful for so many of you who have already donated, and/or are walking with us, and raising support of your own. Seriously, can't thank you enough. If you would like to, but haven't yet... I'll include the link to Kambree's page where you can do so now....

http://fightcf.cff.org/site/TR/GreatStrides/58_Heart_of_America_Kansas_City?px=2302968&pg=personal&fr_id=3311

I sure never thought I'd be in a situation, to be asking others to contribute for a cause so dear to us... if I could fund it all myself, you can sure bet I would.... but here I am.... asking for any little amount. Even $10 can add up to a lot of HOPE for kids and adults, whose diseases are progressively worsening.... while we are waiting for a cure.  (see my previous blog to know, that truly, truly, a cure is possible in Kambree's lifetime) It's a chance to be a part of something HUGE for 30,000 Americans.... and all of the hundreds and thousands of people that love them!

Thank you all! For praying for us. For supporting us. For following this silly blog/aka my therapy!

The Whites pretty much just love ya!!!!