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Edward’s Story

Welcome to our CaringBridge website. We created it to keep friends and family updated about Edward. As most of you know, Edward was diagnosed with bone cancer on January 4th, 2011.  As of January 21st we had a new diagnosis, Mesenchymal Chondrosarcoma.  The good news is that, it is confined to just the one bone, the right femur and it is treatable.  Surgery is scheduled for Wednesday, January 26th.  Edward will have a difficult journey over the coming months.  Prayers and support from family and friends are what will help carry all of us through this difficult time in our lives.

Mesenchymal Chondrosarcoma is treated first with surgery, then with chemotherapy.  We have the pre-op visit with the orthopedic surgeon and the anesthesia department in Philadelphia on Monday. Edward will be at school on Tuesday.  Surgery to remove the tumor and replace the bone is scheduled for Wednesday.  This will be followed by chemotherapy to eradicate whatever cells might be left.  Our goal, which I've been told is reachable, is still to have Edward walk into 5th grade as though nothing happened.  Please check in periodically for updates.  Again, your prayers and support are what will help carry us through this difficult time.

Latest Journal Update

Some News

First, we heard from Dr. Chou (the oncologist) and the first of the genetic test results from MSKCC came back.  There was a mutation identified in the tumor that may be targetable.  The mutation is in a tumor suppressor gene called PTCH1 and the mutation is that Sonic Hedgehog is attached to it...I am not kidding!!! I looked it up...There are three proteins in the "hedgehog signaling pathway family" (that can affect the PTCH1 gene).  These proteins are named Desert & Indian (after real types of hedgehogs) and Sonic (after the Sega video game character ).  I guess someone in research had a sense of humor.  Anyway, back to what's really important...since the possible treatment is only in a Phase 1 clinical trial (very risky) and Edward isn't showing any evidence of disease (he's NED), the doctor's all agree that treatment is not recommended at this time.  They did, however, schedule Edward's next PET/CT scan for this coming Friday.  So please keep Edward in your prayers that he remains NED.

Second, late this afternoon Edward had his audition for the Garden of Dreams Talent Show (the follow-up to the Make A Wish Talent Show).  Unfortunately, it did not go quite as well as he had hoped.  The audition space only had a 9 foot ceiling and it had lights and a boom microphone in the performance area (see pic).  This made it exceptionally hard for Edward to juggle his clubs.  His performance was good, but not flawless.  In addition, my camera wouldn't work when I tried to take video of the audition (turned out the battery was in wrong).  I turned it around and again tried to take video but the camera wasn't set correctly and all I ended up getting was one, slightly blurry, still picture...the one I posted.  Anyway, even though it wasn't perfect, the judges seemed very pleased with Edward's performance and they were really excited to see him because in 15 years they have never had a juggler perform.  So, it's possible that the unique nature of his talent may help to keep Edward in contention.  We did find out that they were auditioning 100 acts today and will be choosing only 18 for the show in June.  We don't expect to hear anything for at least a week.  I'll let you know once we do.  

We also won't get Friday's scan results back until next Monday.  I'll keep you posted on those too.  Thank you for all of the prayers and please keep them coming.

With Love & Hope,
The Migliores