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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

Surgery!

We ended up delayed yesterday because the surgeon had an emergency at another hospital. We finally sent her in to the OR around 4:15. Surgery was a success according to the surgeon. It took about 8 hours finishing around 2:30am. We've all slept and slept this morning. Some pain early, but she is resting comfortable watching my little pony. She is complaining of thirst, but it could be up to four days before they will let her have anything by mouth, so we have some swabs to keep lips moist(the new NG tube is now working in reverse to keep her stomach empty). She came out of the OR with 4 implanted catheters, a drain, and two good size incisions. Her monti channel is just above her belly button. Ideally we will get her in a chair this afternoon, but the surgeon is giving us a little extra time after such a long night. Her hospital stay will depend on the return of bowel function and the ability to eat a regular diet. On a negative note, her rectum was completely impacted even after a bowel prep. The surgeon said she might need a MACE procedure (a catheterizable channel to flush her colon) at some point and in fact almost did one while she was under, but she had so much going on that he didn't want to add something else. I'll be putting in a call to her GI today or Monday to see if we can aggressively get ahead of constipation in hopes of avoiding another surgery down the road, but we will see. Thank you all for your prayers, we are going to rest and get her healed.