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Helen (Ellie) Grace’s Story

Hi! I'm Ellie!

I'm 4yrs old and I have faced a lot in my little life. I am a joy to my family and I am a very brave girl. I am a Riley kid and I am extremely blessed to have a great team of doctors caring for me! Thank you for reading my story! Come back and visit often!

Ellie was diagnosed shortly after birth with a large perineal hemangioma, exstrophic bladder/bladder neck malformations, and tethered spinal cord (PELVIS Syndrome). In her first year of life she had three surgeries. Two were to correct her tethered spinal cord, and the third was to remove a portion of her bladder that was outside of her body (bladder exstrophy). The original plan was to have another surgery around the age of three to repair her bladder neck. But...........

Following routine pathology of the bladder tissue they removed, Ellie was diagnosed with  Rhabdomyosarcoma (Embryonal), a cancer of the connective tissue.  She completed a 46 week treatment plan of heavy chemotherapy, and in May of 2012 she had a radical cystectomy, removing her entire bladder and urethra and ALL of the cancer with it!  As of 3/25/13 Ellie is in remission! She has one big hurdle left, surgery to create a continent urinary diversion, scheduled for May 28, 2015. Thank you for following her story! Your prayers and support mean a lot to us!

 Be strong and of good courage; do not be afraid, nor be dismayed,for the Lord your God is with you wherever you go. Joshua 1:9

Latest Journal Update

She's.......

NOT LEAKING!!! Woo hoo!!

We were a little concerned yesterday after we pulled the catheter. Pretty good amount of belly pain, a little leaking, just generally uncomfortable. Didn't even feel like going to Preschool, but today she has been completely dry!! Yippee! She's still having some discomfort from cathing, but I'm sure she's still just a little sore in her channel from the procedure. Here's hoping our fabulous Dr. Rink has bought her a good, LONG time before we need to redo the channel. 

In other news we'll most likely be starting her on bicarbonate, which will bring her acidic blood back into equilibrium we hope and give her more opportunity for growth. 

We are cautiously thrilled that we may have avoided surgery for a bit! Now grow, Ellie, grow!