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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Friday, October 21, 2011

4 Days Down

Thank you Mary Anne, we love them!

Emily has 4 days down behind her of radiation, which means 8 more sessions ahead.  She is honestly doing well with the radiation treatment end of things, however has a very hard time with the "white stuff", the propofol.  She now knows that the "white stuff" puts her to sleep and she really doesn't like that at all.   She also doesn't like the marks and stickers that they have put on her, but we have had to explain to her just like she had ickies in her tummy, she has them in her legs and we need them to be gone. While she accepts this, she doesn't like the fact that they are there.  So far she has not had any side effects from the radiation, and after speaking with the doctor he doesn't think if she has started any yet, she may not have any. However if she does have any side effects, it could be nauseous and soreness. 

The week has been exhausting, just exhausting, getting up early and having radiation for Emily and then working and with 8 more sessions to go, this has not come to an end yet.  Our main goal here is to get rid of the nasty spots and have Emily clear. 

While there isn't much new to report right now, the only thing that we have really noticed is Emily is very irritable, very irritable about anything and everything. While we are not completely sure if the way she is feeling is from radiation or not, we are starting to think it is the accumulation of chemo.  We used to be able to reason with her and talk to her, however we have noticed that doesn't really work anymore, either we just have to get her through it, or just give her a really big hug and hope it calms.

Wanted to send some love to Mary Ann for making some Emily's Journey Bracelets in Emily's favorite colors, they are wonderful and we absolutely love them.  Thank you so much for your kindness. 

Continue to send lots of love, thoughts and prayers as Emily continues treatment.  We are still waiting on a schedule from CHOP as to when Emily needs to be there for scans and when antibodies will start. 

Good night, give your kids lots of love and kisses!

We went to Spirit Halloween and they had bags and bracelets that you could buy and the funds go to VCU Child Life.  We were excited to see for the first time funds to go toward Childhood Cancer, it was really great to see this!


  1. Praying for you all and hoping you get the support and answers you need

  2. I am glad to hear she is doing well with the radiation Shannon. I am just ready for this to all be over, all of those spots to be gone, and for you to have your beautiful and HEALTHY little girl back!

    Does she sell the bracelets? Would be a good fund raiser. I would buy one!! Love to you all!!