Emily's Journey through Stage IV High Risk Neuroblastoma. Please check back often as we will update as often as we can.

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Wednesday, November 27, 2013

What's Happening?

Today we are in the clinic waiting for Emily to get her treatment. Right now she is starting round 11 of the Avastin/temodar/irenotecan trial. We know that it is holding her stable, but we also know that we have run her course with this because her spots are no longer changing and two of them are brighter. At this time, it does give us time to review and reach out to other doctors on what is the next best course.  We have a few options that we are looking into.  Our goal as it has always been, is NED,with that goal in mind it's trying to make the next best path.  If we decide on the route of chemo and she has to lose her hair again, we are continuing to talk to her and tell her this can happen. But we have also told her that if it has to happen, Mom and Dad both will shave our heads to support her in having to lose her hair.  Thank you for many of you asking about hats, please know we may still be in touch with you on the hats, and we are very thankful.  With that goal in mind too, we are still looking for data to back what she maybe going into, but because she is no longer in the frontline therapy, all of her options are phase 1 and phase 2 trials, so numbers and facts are harder at this point. We are still looking into the vaccine trials which is the one in Texas, so there is a lot more traveling involved it's that, but we know we have to get her immune system up again, her platelets.  Today they are at 33, so still very low, so with the start of avastin and the chemo starting Saturday they are going to drop again, so she will need to be back Monday or Tuesday to check counts.  We continue to be very thankful for those who make donations, they are very helpful with Emilys travels, medicine and expenses. So thank you. The gofundme is also still available, http://www.gofundme.com/emilysjourney ...

So right now, our plan is round 11, this gives us 28 days to hopefully find the best direction. We will be back in Michigan for scans in January.  Just know It's hard to make the best decisions,  but today we are thankful that Emily is here with us for another Thanksgiving and thankful for everyday she is here and can continue the fight with her beautiful smile. 


Thank you Binkeez for Comfort for sending this wonderful blanket to Emily, she loves it, it is so soft.

November 30 is the last day to use the "Emily10" code on smilemakers.com to get 10%off bandaids and free shipping.  We are able to continue to receive bandaids up through December 5th, because our plan is to present them to VCU about the 2nd or 3rd week in December. As of last night, we are almost at 2000! Our goal is over 3000, so keep ordering and sending them in. You guys are doing amazing. Address is PO Box 5383, Midlothian, VA 23112! 

Shout out: 
OB Gates Elementary for collecting over 350 bandaids
Crenshaw Elementary for collecting over 400
Manchester High School for collecting over 1000
Smilemakers for not only making a donation of bandaids at the beginning but for the coworkers for doing a drive
Coworkers at Dominion in Cleveland, OH and the 8th and Main Building in Richmond, VA for helping
Churches and Apartment complexes and all the many others 
The list could go on and on and we don't want to forget anyone, because even one box brings a smile to the kids here in the clinic!!!!!! THANK YOU!!!!!

Happy Thanksgiving. Remember to hug and kiss your kids and tell them how much you love them!

1 comment:

  1. Praying for the right decision to make choosing the path that will give Emily NED.

    Have a blessed Thanksgiving. :)