Helen (Ellie) Grace Griffith's Journal
Written Oct 29, 2013 1:23pmIt's amazing to look how far we have come since last year! September scans were clear! Next round in December!
Off to find normal
Written Jul 10, 2013 11:20amWe are so thankful for all of you! I will update with scan results periodically, but for now, we are off to enjoy our precious Ellie!
An Unexpected Phone Call from the Surgeon
Written Jul 9, 2013 6:33pm
This morning we received a phone call from Ellie's surgeon with some very unexpected news. Our surgeon, who is very deliberate and conservative in his approach, has spent considerable time over the last few months talking to other pediatric urologists and oncologists. These discussions resulted in a complex care meeting this past week involving opinions with other physicians across the country with experience with Ellie's extremely rare medical issues.
Based on these discussions, he decided yesterday evening to cancel the surgery scheduled for this Thursday which was to create a new urinary diversion for Ellie. In fact, he is going to delay Ellie's surgery for several years, because:
*Using any more of Ellie's intestine at her young age could have a drastically negative effect on her growth. The intestine filters nutrition from food and having less intestine would provide her less nutrition. A two-year old is at a crucial stage of growth and development, and Ellie even more so because of the chemo. She needs every opportunity to grow.
*While her immune system has been recovering, it will be a year at least before it is back to normal. The surgeon's colleagues feel that the longer surgery is delayed, the safer the procedure will be and the greater chance of a positive outcome.
*If her cancer were to re-occur, she would have to go through chemotherapy again with the potential this time for radiation. Treatment would be harmful to the diversion and damage the remaining bowel, making it difficult to use a colon conduit as a surgical solution. It would be better, according to his research, to be as close to "cured" as possible from the cancer.
Based on these three factors, he has decided that it would be better for her to wait two or three more years before having her surgery. To say we are stunned would be an understatement, although we understand his reasoning and support it completely (perhaps his timing could have been a bit better!).
So, for right now, Ellie can take a rest from her journey. She will have scans and oncology checkups every 90 days, and six month check ups in urology, until she is about five years old. Then we will discuss going forward with this surgery.
We so appreciate all of your prayers and support these last two years. We appreciate all of you who signed up to help with meals and to watch Owen for the next two weeks.. You made this difficult journey much easier on our family. Thank you!