A lot of information!
ATTENTION ATTENTION: PLEASE KEEP SAT JUNE 3RD AT 1:00PM OPEN. EDEN WILL BE PERFORMING IN HER FIRST RECITAL. IT WILL BE AT VETS MEMORIAL AND ANYONE WHO WOULD LIKE TO ATTEND IS MORE THEN WELCOME.
Eden had an amazing weekend!! She swam Sat and Sunday until I was afraid she might grow gills. She was able to spend all of Sunday with two of her favorite people Stephanie and Stefanie. Life was good! On Monday she went with her two favorite teachers to Easton and they had lunch and went to Build a Bear and ran into Coach Hicks. How can one little princess be blessed with so many wonderfulspiritss in her life?? She was so excited and exhausted when she got home that she had to take a 3 hour nap and woke refreshed and ready to go. She had clinic this morning and she and Shelly are now hanging out waiting for platelets as they are still falling. We heard that her cultures from Sat were Negative just as we suspected and Shelly asked them to draw them once more this morning just to be double sure.
Rourke and I spoke with Dr. Yeager a few times over the weekend and thought that Eden would be heading to Philly next Monday for MiBG therapy based on those conversations but today we had a Concall with Dr. Mosse from CHOP and voiced our concerns about the amount of Stem Cells she has in storage and were able to change our strategy some. Here is the dilemma: We are seeing good response to the two rounds of chemo Eden has done but there is still evidence of Cancer Cells in her body based on the MiBG done last week. So, Ideally we would go straight to MiBG Therapy to try and get her back to NED, BUT we have learned that Eden only has enough Stem Cells in Storage for one Stem Cell Rescue and its highly probable that she would need them after this first MiBG treatment and we hate the idea of abandoning any treatments in the future that would require backup Stem Cells. As Eden goes further and further with treatments it would be harder and harder to try and collect Stem Cells from her body so we feel it's important to do that now even if it means delaying the MiBG Therapy for a month or so. Dr. Mosse is in agreement with us and feels this is a good choice. She will instead do two more rounds of the current Chemo and a Stem Cell harvest between them. The down side?? Relapsed Neuroblastoma tends to react well to therapies it hasn't seen before (such as the Chemo she is on now) but it is usually very short lived and we are taking a chance that the Chemo will stop working and the Cancer will start to gain strength in the meantime. The other down side is the Stem Cell Harvest is very hard on her. She is given a lot of drugs to boost her Stem Cells and she has to have a very rigid catheter placed near her groin for the collection for as many days as it takes to collect enough Cells. (Up to 4 days) The Catheter will stay in 24/7 and she cannot move her leg so she is stuck in bed on top of being in pain from the Catheter.
I know this all sounds very harsh but this is her life and this is our life and we have to make very hard decisions and we do everything we can to make it up to her in between. She is such a tough little girl and I have no doubt she will come through this with the spirit she has made it through everything else.
Please say an extra prayer for another NB fighter Christi Thomas. She has just finished a very Dangerous experimental treatment in hopes of fighting back the raging Cancer taking over her little body. Her Stem Cells have been given back to her and they are waiting on pins and needles for it to engraft and restart her little body. Christi you are in our prayers!!