Makenzie Moore

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. :)

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.

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.

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.

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.  :)

My cute little BABY Brayden is now 6... He is such a sweet little boy.  He was sick this year on his exact birthday.  Threw up all day and never complained one time. He tried to act like he was not sick.  6 things we LOVE about Brayden...

FUNNY...  He always has something funny to say. He is witty and always has a good comeback.  One time Chris was asking him things like...
Chris: where did you get your blonde hair from...
Brayden: Heavenly Father...
Chris: where did you get your blue eyes from
Brayden: Heavenly Father
Chris kept asking him different things like that with the same response... The last thing he asked him:

Chris: where did you get your toots from?
Brayden:  Satan

SHY:  He didn't talk to his Kindergarten teacher until a month and a half after school started.  She said she loves him because he always gets her jokes.  He got his first goal in Soccer a few weeks ago.  We asked if he scored and he said no.  Does not like the spotlight to be on him

WILD:  He is a little dare devil.  He learned how to ride his bike about 6 months ago and he is SCARY to watch.  He will try anything.

SWEET:  He LOVES to cuddle. We know he is tired when he brings us his 3 blankets and asked to sit with us.  Loves his brother and sister.  He likes to help me with anything.

Wii :  He is really good at Wii and will play it as much as we let him.  He is really good at it.

PICKY:  Likes things a certain way.  Very picky eater. Wants us to brush his teeth. Only likes wild cherry Capri Suns. Has to have the "soccer player"  on the front. ONLY likes to wear soft shorts  (ie...basketball shorts) .  Doesn't like anything slimy on his hands.  That includes shampoo... He gags when anything slimy is on his hands.
These are ALL things we LOVE about Brayden.  HAPPY BIRTHDAY!!!!!  B

That's right...  12...  I can not believe that Makenzie is 12... and all that comes with it.  New for Kenzie is:

braces

new glasses

make-up

Young Women's (youth program for girls at church)

Babysitting

paying for her own cell phone... to name a few
12 things about Kenzie we love!

1. Beautiful (in and out)

2. Spiritual... my mom has always called her an old soul.  She is definitely wise beyond her years. I think she is raising us instead of the other way around.

3. Notebooks... always carries a notebook. Always writing down everything.  Takes notes at church and studies the topics she hears at church.

4. Funny... Most people don't know that Kenzie doesn't really have a filter.  Sometimes anything goes... if you could be a fly on the wall... great entertainment sometimes.

5. Crafty... Loves to make crafts and is very creative

6. LOVES her family... Tries to make sure everyone is loved with lots of hugs and sweet comments.

7. TEXTING QUEEN...  We got her a cell phone last Christmas.  It has been nonstop.  Great way to keep in touch with cousins and grandmas.

8. Good example...Her brothers LOVE her and she is always trying to set a good example

9. Favorite color is PINK.

10. Great at figuring out how to play a song on the piano. plays the flute in school

12.The best daughter anyone could ever want...

WE LOVE YOU KENZIE!!!!  HAPPY BIRTHDAY!!!!

It has been forever since we have updated. I am teaching Makenzsie how to update it and she will probably do a better job than me. She did the last post and I think she sounds like a grown up.  I guess she was born an adult. We had a fantastic weekend. Carson was baptized (by his dad) a member of the Church of Jesus Christ of Latter Day Saints. We believe that we are baptized at the age of 8... it is an age that they are starting to understand good choices and bad choices and that they are accountable for their own actions. We are super excited that Carson has made that choice. He is such a good example to all of us.  ALWAYS trys to make good choices and we are so happy he is a part of our family. He was baptized on the same day as his friend Jillian. They both looked so cute. For the program Makenzie sang with her grandpa (Jesus once was a little child), Cousin Courtney played the piano, grandma led the music, Jillians Grandpa gave the talk and sister Wright welcomed them into primary, Bishop Pace spoke, sang I am a Child of God for the closing song,  Grandpa George said the closing prayer.  I am so grateful that friends and family came from near and far.  We really appreciate everyone that came.  Here are a few from the day. The ones in the dessert we took at the location of where the new Temple will be built in Phoenix.