Kennedy Shane Ellis

Eight year old, Kennedy Shane Ellis, is the daughter of Dustin and Krystal Ellis.  At around 13 months the Doctors  notice Kennedy was not gaining weight.  She had never been a good eater but at this point there was no cause for alarm.
      As the months had passed she continued to not gain weight and would not eat.   She would have some vomiting on a regular basis.    Dr's checking everything in her digestive system with no luck at finding anything.   Dustin and Krystal did everything they could to get to the bottom of her weight loss.  She lost so much weight you could see her bone structure and it was alarming:(   Dustin and Krystal begged for help.  At that point, 15lbs and 18 months old, they placed a G-tube/Feeding tube in Kennedy in hopes to get some nutrition in her.
   She vomited pretty regularly and the pump on the tube had to be administered at such a slow pace she was attached to the pump 20 hours a day and still was vomiting.  
    The thing that lead Dr's to do an MRI was that Kennedy was looking at things with her eyes sideways and with the G-tube she still wasn't gaining and still vomiting pretty regularly.
    August, 2012 at just 19 months Kennedy was diagnosed with a very large 5.8cm Pilocytic Actrocytoma.  The Dr.'s felt that was the type of tumor choosing not to do a biopsy at the time because of the dangers to Kennedy.   She would immediately start chemo.  
     In the meantime Kennedy was still vomiting and not able to tolerate the amount of fluid going into her G-tube so a G/J tube was placed. This would bypass the stomach and go straight to the small intestine.
     Within a few months Kennedy would become worse.  She would vomit several times and hour.  After and MRI they realized the tumor was rejecting  the chemo and caused the tumor to grow to approx  6cm.    At this time she was put on high dose steriods.  For the next 3 months Kennedy didn't have a very good quality of life, she would mostly lay and moan it was obvious she was miserable, but she was not old enough to talk and that left us once again with a guessing game.  This was heartwrenching and caused alot of worry.  At this time another MRI was done and they found fluid in her ventricles so Kennedy  would have shunt placement in her brain to relieve the pressure.  Since she was going to be in surgery for her brain already their onchologis Dr. Batra thought it would be a good time to do a biopsy December 2012.
    The biopsy would show that Kennedy had the more aggressive tumor, Polimyxoid Astrocytoma.
A new treatment was givin, oral chemo.   It was administered in her G/J tube by her mom and dad ever 6 hours for 72 hours  every 42 days.  Her next MRI would show this  chemo was working and our family was so happy.  The tumor started to shrink.  That was a very happy day!!!
    After 15 months of chemo the tumor became small enough that Kennedy got to take a break from chemo. 
Because the 15 months of being on chemo was a huge time for a baby/toddler to develop, Kennedy had many developmental set backs.  She suffered from Neuropathy in her arms and legs which made it difficult for her to even take a simple step.  For months she was unable to go from standing and sitting.   She would cry when changing her diaper or pants because of the pain in her legs.  She was able to get her strength slowly back and the pain slowly dissappeared.   She has lost most of her vision in her left eye and has glassed to help her  not strain her right eye so much.  She also has had thyroid issues and currently is taking medication for that.  Her teeth had taken a tole too as all of this was going on during very critical developmental time of her life.  With that said,  she was able to have a great summer 2014:))
     December of that same year Kennedy had a regular MRI, checkup.  The MRI showed Kennedy's tumor had grown.  Our family was devistated as here we go again with chemo.  Kennedy is doing chemo now every Monday.   They had to do a lower dose because a full dose keeps lowering  her blood  count.   She had an MRI in February due to some headaches and her chemo is working:)))  It  was stable with a possiblity of shrinkage:)
    Although Dustin and Krystal do what needs to be done, it has been a financial strain to them.  They go to Riley evey Monday and sometimes more than one time a week, as she has Endrocrinology, dental, and eye appts regularly.    
     So, I, Kennedy's Grandma Dana has set up this acct in hopes to suppliment some of the financial strain this has caused.  They have had so much love and support over the last 2 years and trust me, they and I will never forget any of you who have helped.   This journey is so very hard and the love and support they recieve is so overwelming.  God Bless all of you and Thanks for all you do:))
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Dana McClain Ellis 
Crawfordsville, IN
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