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

The Plan. We Think. (I mean who can really plan with Ellie?) :)

Today Ellie had video urodynamics, a test involving catheters, and contrast, and xrays, and all sorts of fun things designed to measure bladder pressures and general function of her urinary system. She was a trooper. Once she was all hooked up she just relaxed and watched movies. The test was run twice. The first time they saw some high pressures, kidney reflux, and leaking. The second time they closed off the monti with a small balloon catheter and didn't see the high pressures or the reflux, but just a little leaking. Our surgeon thinks it's a channel problem (either the channel has lengthened or the muscular wall behind it is too thin to allow closure of the channel). We talked about the different options and think we will procede like this:
1. He started her on a medication called ditropan. It will relax the bladder walls, so if there are high pressures causing leaking this will lower them. The negative to this medication is that it will also relax her colon potentially increasing her constipation issues. We will continue on her miralax and exlax and start a cone enema regimen to help her colon to empty. The hardest part of managing her constipation is getting her to the point where she can wear underwear rather than a pull up. We have talked about a MACE procedure to help with that. Maybe the cone enemas will allow us to empty her colon and keep her clean without having another surgical channel. We will try the ditropan for 7-10 days and see if it makes a difference in her leaking. 
2. If the ditropan fails to stop the leaking we will try an outpatient procedure that involves filling part of the channel with collagen (deflux). This may tighten the channel and prevent leaking. 
3. Finally, if the deflux fails the surgeon will need to repair the channel surgically, which will involve a recovery much like the surgery in May. If we get to this point we will have to decide if we would like to go ahead and have the MACE procedure done. 

Whew. That's it! There are never easy answers when it comes to Ellie. Our motto is always what NEEDS to be done and what's the LEAST invasive way we can do it. 
We will keep you posted! Thank you for your prayers! 


3 people hearted this



Mike Moran
By Mike Moran
You two are such an example to others dealing with health issues of their children. You deal with what is front of you and trust in God.
Diane Goins
By Goins Gang
What a trooper! I can't imagine all the decisions that you have to make at every turn. We will continue to pray for God to go before you and give you and the Dr.s wisdom. Thanks for keeping us updated!
Melinda Rivelli
By Melinda
Ellie and all of you are definitely an inspiration! We'll keep the prayers coming.
Ellen Dolinar
If you ever think crappy things are going on in your life all you have to do is look to Ellie, who, without a word, can let you know your life really isn't that bad at all! What a trooper? I saw WHAT AN INSPIRATION.

I am hoping simple is the solution for Ellie.
God bless the family.
Big Ellie
Dee Janik
By Dee Enrico-Janik
I am in admiration of this brave child and her family and honored to have Ellie as a student in my Faith Formation class on Sundays! Prayers for healing and health <3
Missy Ortman
By Missy
I am so sorry Ellie is still having troubles! Lincoln started with Ditropan too and sadly it increased his constipation and reduced his sweating to the point where it was dangerous. He has been switched a few times but we found Botox injections (not sure if they can do that with Ellie) and Sanctura and Myrbetriq to be good at helping with spasms. Lincoln is currently on high doses of all three. Our next step is similar to the path E is on. Thank you for sharing your little lady's journey. She is in our thoughts often.