FUN
Talks A LOT
Spirtual Giant
Kind
Loving
funny
Helpful
TEXTER
Teaches herself to play the piano (mom and dad need to get her some lessons)
Strong and a survivor
Goofy
Great hugger
AND A GREAT TEENAGER who loves to put on makeup, and fix her hair and is just a beautiful young lady.
Update on Makenzie's Medical stuff. Makenzie has done SUPER well over the last year and a few months. She went on a clinical trial last year and was on it for almost a year. The medication she took(Afinitor - Everolimus) kept the tumor from growing and caused her no side effects. During much of the clinical trial, our insurance company - Golden Rule - denied coverage for routine medical care things like MRI's and Labs. FRUSTRATING!!!! So we are having to fight with the insurance company about those claims while trying to hold off the hospital billing department... and they are not patient about waiting for payment. Now, because she did so well on the Afinitor medication, her doctor wants to keep her on the medicine for at least another year and the insurance is denying the medicine saying it's investigational treatment... It is an FDA approved medication but apparently not for pediatric brain tumors so they are saying it is investigational. This is the only medicine available for her right now. She has exhausted all of the standard treatments for her tumor. If she goes off this medication, the only other things are more clinical trials and in order to qualify for those the tumor has to grow... When you have a brain tumor that's the last thing you want to hear is that it has grown. Oh yeah.. and the medication is about $8,800 a month... Sooooo we are in the process of trying to figure out what to do and how to go about it. We would appreciate any and all prayers... We are truly grateful for what has been given to us and know that all will work out in the end... It is just making it in one piece and trying not to cry every hour on the hour... done with my vent... here are a few updated pictures of Makenzie on her birthday. :) I thinks she looks so cute in braces. :)
7 comments:
Wow she has gotten so big! She is beautiful!!
I should have said old instead of big. :) Hope all will get sorted out with the insurance such a pain.
Oh my gosh makenzie you are growing up so fast and looking more like your mom every day! So beautiful!!!!!!:) I love you girly! , Brooklyn Burch
Wow! She is certainly looking grown up and beautiful like her mama! Our prayers are with you guys and hope that everything will work out with the insurance and medication. Please let us know when you have your fundraisers and if there is anything we can do from our little corner of the world! Hugs!
It is so great to see how well Makenzie is doing! I hope you will win the fight wirh your insurance company...what jerks!
It is so great to see how well Makenzie is doing! I hope you will win the fight wirh your insurance company...what jerks!
Wow! Makenzie, you are sooo beautiful! I love to see and hear how you are growing! I know first hand that insurance companies can be almost as scary as the illness (almost). Our prayers are with you!
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