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Helen (Ellie) Grace’s Story

Hi! I'm Ellie!

I'm 2yrs 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 will have a nice break before surgery in July to build her a continent urinary diversion.  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

Ellie's Big Day!

Ellie's surgery to create a continent diversion is tentatively set for 5/28. Our surgeon wants to check with her other specialists and consult with tumor experts around the country just to make sure it's the right time (this is the surgery that was cancelled at the last minute two years ago). It's a big surgery, but we know it will provide the best quality of life for her. No more bag!!!! Her surgeon will create a new "bladder" using her existing conduit and an additional portion of small intestine. He will then create a catheterizable (is that a word?) channel out of bowel or appendix. She will empty this internal system with a catheter. I'm both excited and terrified. The bag is getting harder for her. Her skin itches, it comes off, she has to wear a leg bag. This will be a lifestyle change for all of us. She will have to be emptied regularly and will have a higher risk of Urinary tract issues, but she does anyway. Her surgeon said if it was his child, he'd do it. I agree! 

Comments

3 Comments

Linda Six
By Linda Six
Praying for you all and His perfect timing for this procedure. It is a miracle what they can do now with medical issues. Praying for all of your family and especially precious Ellie.
Ellen Dolinar
By Ellen Dolinar
Thank you for continuing to keep us up to date with Ellie and the family. I don't everyone realizes that this journey has not ended and there is more to deal with. God Bless Ellie and the ENTIRE family.
"Big Ellie"
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Missy Ortman
By Missy Ortman
Praying for you guys! Ellie will love her new freedom! CIC is super easy and just becomes part of the daily routine. At 4 Lincoln is able to insert the tube himself (with our supervision) and our 11 year old can CIC him for the baby sitter if needed.
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