family pic

family pic

Tuesday, June 17, 2008

saylor update

many of you obrien family supporters have been waiting for an update with us on saylor's surgery at USC. let me explain a little for those of you that havent, and for those of you that have, so this all makes sense.

saylor really doesnt have much of a bladder, she needs augmentation. across the country the pediatric protocall for this is to use bowell tissue to augment the bladder. like any surgery this comes with downfalls. some of the risks included in this usual treatment surgery really swayed me to look elsewhere for another option. i found another potential option clear back in january in a doctor at wake forest in north carolina who led me to a collegue who was working with him on this other option at USC in LA. it basically consists of taking what bladder tissue is there and growing it in a lab and using grown DNA to augment the bladder. its still in very experimental stages and these two docs have been preparing to present to the FDA in hopes that they would approve a phase 3 study for this procedure. the medical conference with the FDA Over this was to be held in late may. so we decided to wait until then in hopes that we would at least know when this may be available. we sent saylors medical records and we were told she is a prime candidate and that they felt encouraged that the study would open in 2008 sometime and would be approved by the FDA and saylor would be rip roarin ready to go! the very few previous cases in phase 1&2 of been a little more than 50% successful. so we waited and waited and waited and waited. then the end of may came and went and here we are in mid june. after several emails to docs i finally received a phone call today with the news that the FDA did not approve things as they stood and they will be required to collect more data and do more paperwork and that he projected that phase 3 would not open until late spring of 09 if at all.

where does this leave us ... how do i even begin to explain the wurl wind in our minds, of questions and decisions we need to make. so for now we have no answers for you.....

5 comments:

Danielle said...

This must be so frustrating. I hope that you are able to find another safe alternative that will work for her particular situation. regards

The O'Briens said...

Oh my. I'm so sorry. I know how bad you wanted this (and how long you've been waiting to hear). You guys are in our thoughts and prayers. We love you all to pieces.

The Chic Chef said...

Wow! Thanks for the update on sweet Saylor. You have so much strength and patience! I am thinking of you. I admire that you and Nate are constanly serving and thinking of others even though you have plenty going on in your own life. You are the true example of enduring trials. Love you.

Engrained Emotions said...

Audrey, my oh my, I cannot even imagine the disappointment you felt when you got this call. I am sorry for this situation you have found yourself in. I do know that there is a plan, and that at some point it will click and you will understand what knowledge will be gained from this.

How hard it must be to endure this long journey you are on. You and your family have inspired me. We have had little interaction, but what a blessing you have been in my life.

My thoughts and prayers are with you.

Debbie Peterson

Sharon Murphy said...

Sorry to hear your disappointing news. At least now you can plan your summer. Saylor is such a sweetie.
sharon