October 20, 2013

So much to say!

Summer was soooo busy for all of us, from the moment Kassidy graduated from high school, till the end of summer, life seem to go into high gear.  Her graduation party was a success, so many came to celebrate such a special moment in her life. Thank you so much to all of you!

Graduation Party 

Ode to Kassidy

We were able to fit so many doctor's appointment that we couldn't get to with the craziness of year end senior stuff.  We finally got answers after her endoscopy that her esophagus had not been damaged from all the throwing up, no hiatal hernia, but her stomach did have to be dilated with a balloon to allow food to digest better.  This has helped her quite a bit.  Also, she finally received her cpap machine that we so long fought for and sleeps most night with it.  We don't worry so much about her dropping in oxygen levels at night.

The beginning of July, she managed to pull out her broviach port right out of her chest and did not even feel it.  She had gone to take coach Spencer, who was visiting, to CVS pharmacy to check his blood pressure because he had not been feeling well and while she waited in the car, she felt that her shirt was wet.  When she looked down, her port was leaking medicine right on her lap. Oh my goodness!  She was so freaked out that she drove herself to the hospital immediately.  When I met her there, I thought that I would see her bleeding profusely from the port site and that she would need emergency surgery.  To my surprise, the port didn't even bleed at all.  An x-ray showed that no debris was left behind, so we were sent home with an appointment for surgery to have a new one put in.

The Broviach!

Then mid July while we were on vacation, her new port fell out again!  We were a little more calm this time around about it and Dr. B suggested we wait till the August MRI  to make a decision on putting a new one back in.  Her chest was so sore from the old broviach site and new one, that we decided to take the chance and see what her tumor would do off medication for a month and half off her medicine.  And guess what?  August MRI showed stable results.  Thank you God!

Since her port fell out she decided it was time for a little beach time.  It had been 2 years since she had been in the water.

So, now Kass has been off ANP since July 24th, that will be a total 90 days without treatment.  Yikes! She has an MRI scheduled this week on Thursday, October 24th.  The results of this scan will determine if Kass is done with treatment or not.

I have to tell you that I am a nervous wreck about it.  I am afraid! If Kass goes off ANP treatment as of now, she will not be allowed back on the trial because the FDA still has a ban on new ANP patients and the clinic still does not know when the ban will be lifted.  This makes me so sad!  I wish the FDA would get off their high horse and recognize that ANP saves lives.

On the other hand, Kass has been doing great off treatment.  She is less tired and this is helping her with her college classes and job.  Yes a job!  She got one tutoring through a program at UNLV.  She works close to home.  We are so proud of her!  Not only that, but her headaches and throwing up are almost nonexistent.  Soooooooo thankful!  Nausea still comes and goes, but nothing like before.  I am holding my breath.  I have to tell you that I am almost afraid to celebrate it.  Could this be it???  Remission...  We only dream and hope.  Meanwhile, we are enjoying ALMOST feeling normal.

First Day of School as a College Freshman

Please, don't stop the prayers coming.  We have such an important decision to make this month!

We are also so excited to invite you all to the 3rd Annual Kassidy's Army 5K Run & 1 Mile Walk which is gonna be held at Bunker Park on Saturday, November 2nd.

This year we have decided to start paying it forward.   From the moment that we started Kassidy's Army we have always wanted to help others in need like you all have helped us, along our journey.
We have chosen to help Aurora who is a 10 month old baby born with an auto immune disease, heart problem, floppy airway that has required a trach and problems with her stomach muscles that she has a feeding tube.  

Little Aurora & her Parents
Her facebook page: https://www.facebook.com/PrayersforAurora13

3rd Annual Kassidy's Army 5K Run & 1 Mile Walk

Saturday, November 2nd, 2013 

Bunker Park on Alexander and Tenaya Way.

Opening Ceremonies 8:30am

5K Run 9:00am

1 Mile Walk 9:15am

WALKER & STROLLER FRIENDLY
REFRESHMENTS PROVIDED BY OUR SPONSORS
MEDALS TO TOP 3 IN EACH AGE GROUP
RAFFLE PRIZES & AUCTION BASKETS

We are in NEED of Volunteers for registration, setup, water station, finish line and clean up. Please email us at kassidysarmy@live.com


YOU may REGISTER ONLINE at:
http://www.hope4lives.org/kassidy-s-army-5k

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Check out this year's shirts!