Rourke spoke to Dr. Yeager this morning and Eden is officially N.E.D!!!!! I cant tell you what a wonderful blessing this is to us! The last few months have been very calm because the MiBG treatment was done and there was nothing for us to do but wait and we felt comfortable that the treatment would do its job as it did the last time so this last week was extremely stressful going back into the pits of Nuc Med for scans and once again watching the image of her little body show up on the screen and holding my breath looking for spots to light up.. People always ask how do we do this day in and day out and some days i can honestly say I DON'T KNOW and then one smile from her or hearing that amazing little giggle and the world is right again and i know there is nothing in this world i wouldn't do to know i can see that smile again tomorrow. I think and pray every day for so many parents who no longer have that and i know how lucky we truly are.
Many people have emailed in the past few days confused as to our "concern" about clean scans.. Please understand there is nothing in this would more important then clean scans to us but even though we cant see the Cancer Cells in there they are for sure still there. No doubts in anyone mind and it will come back. It is imperative that we get her back on a treatment plan ASAP to try and keep the Cancer quite for as long as possible while her body heals and the Dr.s continue to look for a Cure. Doing nothing is not an option. The problem with finding a study for her is there aren't any open at this time for a child who is NED. We will probably ask to put her on one based on Compassionate use. This status is used to allow children into studies they would otherwise not qualify for. They have very strict guidelines for studies for a very good reason.. If they were to allow children who are NED onto a study it could upset the results of the study if favor of the drug just as if they allowed children with extreme amounts of cancer it could upset the results the other way.. When a child is allowed on a drug on a compassionate basis the results will not be included into the study. Dr. Yeager is working with Dr. Mosse in Philly as well as Dr. Reynolds in CA and next week we will be meeting with them to discuss what is next.
Thank you for all of your prayers! We couldn't do this without you.