Latest MRI Results

Makenzie had an MRI scan a few weeks ago... It came back showing some new growth. It is small but it is in two nodules or areas of the tumor. She has been on this current medicine for about a year and a half. She has done very well on it with no side effects. Her oncologist called tonight to let us know that we have two options. We can continue this medicine and repeat the scan in three months or try a new medicine. Radiation is still on the back burner because of the potential permanent brain damage due to the tumor location. SO... we are asking for prayers. Please pray the the tumor will not continue to grow. That the doctor will know what is the best option and that we will have answers as to what is best for her as well. Pray for her to not have fear. She is scared to try a new drug because you never know what side effects will be. We thank everyone who has helped us so many times. We are so blessed. We are also so blessed to have Makenzie in our lives. She is such a good example to all who are around her. :)

Thank You!

Here is Makenzie, her grateful family, and the amazing lawyers who are responsible for convincing our insurance company to cover the medication that Makenzie needs to control her tumor. Because of these guys, Makenzie still gets to take her medication each night before bed, the medication that controls her tumor with no side effects and allows to enjoy each day as a "normal" teenager. And, her parents don't have to stress over how to provide it... there really is no price on that comfort and we will be eternally grateful to these men. No words can adequately express our gratitude.

Mission Accomplished

It looks like that one final attempt (see previous post) was successful. The insurance company faxed our attorney a letter yesterday agreeing to cover all of the claims they had denied while Makenzie was participating in the clinical trial and to cover the expensive medication Makenzie needs going forward. Happy news!

Well, in a final effort to avoid suing our insurance company, which could take a year or two, we (our new attorney, really) sent off one final, strongly-worded demand letter this past Friday demanding that Golden Rule pay the past denied claims for the period of time Makenzie was participating in the clinical trial and continue to provide Everolimus (the medication she needs) for her in the future. We gave them until the 23rd of May to agree to pay before we file suit. The best result in this situation is for the insurance company to simply reverse their position and agree to pay. That way, Makenzie gets her medicine. Otherwise, we have to find a way to pay for the medication for a year, maybe more, while we sue the insurance company. To anyone who reads this... we ask for your prayers that the insurance company will do the right thing and just agree to pay.

Kenzie continues to be well. She, and all of us, are looking forward to school ending in just a couple of weeks.

Encouraging developments

So.... some encouraging developments. We think we may be able to get the medication from Canadian pharmacies for about half the cost, $4400. That's illegal, but apparently the US doesn't prosecute people who buy less than a 90 day supply at a given time for personal use. And, there is a possibility of switching insurance companies to a company that would agree to cover the medication, unlike our current insurance who refuses to cover it... which we believe to be in violation of the insurance contract. We are looking into that. But any switch, if we made it, couldn't take place until July or August. So, if we switched, we still have to figure out between now and then.  One irritating thing we discovered is that the amount that insurance companies pay for the medication we need is less than $3000 for a 3 month supply. But we can't buy it retail at that price. The cheapest we've seen is the Canadian pharmacy. Anyway... the situation looks a little brighter than it did a couple of days ago.

Teenagers

I can not believe how long it's been since we updated.  A lot has happened since then.  Makenzie became a teenager in March.  I am still trying to figure out how that happened... and so fast!  She is a beautiful young lady and we love every minute with her.  Thirteen things we love about Makenzie

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.  :)