MMA and Avery

     My cousin Sean lived with us a few years back.  Pre-brain tumor.  He was just beginning to train in MMA, and Las Vegas has some great gyms.  Avery and Sean hit it off.  He would show her some moves and how to protect herself.  She is VERY competitive and we learned early on she would pass out before she would tap out.

   Sean has been training and fighting ever since.  He has been getting better and better.  He is working his way up to bigger fights and more money. 

   But is also has a big heart.  He called us a few months back and wanted to do a fight to promote pediatric cancer.  There was a girl named Tenley that also had a brain tumor that would be at the fight.  They were going to raise money for Make-A-Wish and the Tenley foundation.  AWESOME!  We were in.

   Little did we know, Tenley (who is 9) has the EXACT same tumor as Avery.  A bit different location, but the same kind.  She was diagnosed in July of 2010 (a month after Avery) and did her Make-A-Wish to Disneyworld in April 2012 (a month before ours).  Kind of mookey. 
   Avery and Tenley hit it off at the fight.  It was great to see Avery just goof around and be a kid.  And the fact they have so much in common was heartwarming. 

   Sean won his fight.  Yes, Avery watched and cheered him on.  Along with me, Chris and Nathan. 

My Vida Loca

 

    I know it’s been a LONG time since I  posted.  But here it goes.  We have had a busy/good summer so far. 

     Avery started out being a princess for the Miss Nevada and Outstanding Teen Nevada 2013 contest.  One of the girls from the Make-A-Wish office, Alyssa D'Agostino was competing for the title this year.  She asked if Avery could be her princess?  Of course!!  She didn’t win, but it was a great weekend for Avery. 

Avery met the current Outstanding Teen NV, Elle Smith.  Super cute girl!

 

 

And Randi Sundquist, 2012 Miss Nevada.  We have met her at a few events.  SUPER DARLING!!  Always sweet to Avery.  We are really going to miss seeing her at events!!

Alyssa had lockets for her and Avery made.  Inside there is a wish, castle and Disney charm.  And it’s pink and sparkly!!

Alyssa helped Avery make this “dress” for the fashion show.

More of our summer fun to come!!!!

 

Technorati Tags: Miss Nevada,Miss Nevada Outstanding Teen

You have to be kidding

 

    So  I guess our journey with kids with medical issues isn’t over.  Yes, Avery is going to be life long.  And now, so is Payton.  No brain tumor…diabetes.  She is not full blown insulin dependant.  They consider her pre-diabetic.  We have to monitor her blood sugar levels and she has to avoid all simple sugars.  No soda, juice, candy, desserts.  Except in the case where her levels go really low.  They she has to get some to bring it up.  Her problem is she spikes and her body can’t get the levels back down.   Luckily I love the endocrinologist.  She is both Avery and Payton’s doctor.  Dr. Saad if you are looking for a good pediatric endocryn in Vegas. 

   Any suggestions of low carb desserts would be helpful. 

And yes, we had a BLAST as Disneyland and Six Flags Magic Mountain.  Since the weather was rainy and cold, no one was there!  Seriously.  I have never seen Disneyland so empty.  We were able to ride almost every ride in one day!  A miracle.  And Six Flags, emptyer (I realize that isn’t a real word…).  Hallie was the only kid on the little roller coaster for four times.  They didn’t even make her get off until she wanted to.  It was great.  Thanks so much to Project Teddy for sending us!! 

  

 

They put us up in the Annabelle hotel.  It was super nice and close enough we walked to Disneyland.  Saved us on parking!  I would HIGHLY recommend this place if you are going to Disneyland. 

Make A Wish Gala

   We had another amazing event.  Make a wish southern Nevada throws an amazing party!!

The dresses turned out nice.  Avery’s actually is vintage fabric.  It was from fabric my mother-in law had from her mom.  My mother-in-law had a dress made from it when she was about Avery’s age.  SUPER cool!!  Nathan of course looks annoyed…as usual. 

  We also met up with a super cute girl (women, but she is tiny and a lot younger than me, so I say girl).   Her name is Erica Linz.  We had seen her at a few other events.  I asked her what she did for work, she is a cirque du soleil acrobat.  SERIOUSLY??  She stared in the Cirque movie Worlds Away.  Her and Avery totally hit it off!!  We meet some amazing people.  She is at quite a few events we go to.  She has a huge heart and is helping children.  That makes her even more amazing!

It's Not Over

I went to Endocryn yesterday.  Not with Avery.  With Payton.  I did get some of Avery's results since they see the same great doctor.  Avery is low on vitamin D (REALLY?  We live in LAS VEGAS?  I just need to sit her outside a few minutes a day.) and her thyroid med needs to be increased.  

   Now onto Payton.  She has been having some blood sugar issues.  They had her do a glucose intolerance test.  If you don't know, she HATES needles.  Like passes out, hates needles.  Plus not eating to her is pure torture.  It wasn't fun.  But we made it through.  We knew that her blood sugar drops, but the concerning thing is her levels are spiking.  Over 200. That's bad in case you are like me and have no idea. 

   SO....we get to repeat this wonderful test.  Payton looked like she was going to faint just from that news.  We have to monitor her blood sugar now and pray that this doesn't end up looking like what it is looking like.  Diabetes.  I have a brother in law and niece with it. I know what it means.  Especially for a girl.  So if you can add Payton to your prayer lists, that would be great!! 

   But we are off to Disneyland and Six Flags.  I am going to try to forget about all the medical issues and just have FUN!!  

   Plus it's Chris' birthday today.  Happy Birthday Honey.  Even though you lied to me 16 years ago.  I still love you.   

Finale

   Avery has had her last dose of chemo….hopefully EVER!!  WE are SO glad to be DONE!  Obviously.  We have at least a month of blood counts and watching her.  Then MRI scans to see.  Then in about 3-6 months they will take out her port.  It seems like the longest year of my life.  And actually it’s been almost 15 months since we started. 

   Thanks to all our friends and family who have literally carried us through this.  You are amazing people that have made the journey bearable. 

   And we are going to DISNEYLAND.  Just for one day.  Then Six Flag, which Avery is super excited because she loves big roller coasters!!  Good thing we are bringing a 14 year old to ride them with her! 

  Hope everyone is having a great week too!!

 

   

 

Technorati Tags: chemotherapy,disneyland,brain tumor

Finish line

 

It’s right there….ONE more dose!!  Marianne, one of my super talented sisters, made this for me.  I am going to make a t-shirt out of it for Avery.

I am HOPING she gets the last dose on Wednesday so I can give it to her!! 

Along with that my super talented sister made me this….

Just so you know, you can save it and print it off.  I am going to SUPER size it for my living room!!