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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Sunday, September 16, 2012

Great Past Week

Emily's 2nd day of Kindergarden!!
Emily had an amazing first week of school.  All of the students were really good with her and she wanted to go back everyday.  We are so happy that she enjoyed her first week of school.  We are so thankful that Emily is in such a great place with great kids and such a loving teacher. 

Brianna on the other hand, had a hard time at school this week.  It was new for her, and new to be around a lot of kids that she isn't used to being around and just adjusting to not having a binky.  We are thankful that she is in a good place and they are working with her. We know it will take her some time and she will get used to it.

Jessie is doing well in 5th grade.  She has more homework this year, but to be expected with 5th grade.  

Overall this past week, was a great week and the girls did really well. We explained to Emily tonight that this week she would be in clinic all week for another round of chemo.  "I thought I was done with chemo!" We explained to her we thought she was done too and how she has 3 spots left and we need to get rid of them. Emily took the news well and we told her how proud we are of her for being such a good girl.  

Earlier this week, we heard some awesome news from Dr. Sholler. Dr. Sholler received approval from National Cancer Institute that Emily is eligible to receive CH14.18 compassionate use with an Echo and Pulmonary Function Test. These two tests need to be completed and sent over and hopefully can start CH14.18 within a month.  So, Emily will do another round of the Nifurtimox trial, 4 days of chemo with the Zometa, Day 5 Neulasta shot and then 3 weeks after the chemo, we will head back to Helen DeVos for scans to get ready to start Antibodies.  We are so happy that Emily was approved for compassionate use of the antibodies, this has been our goal to get Emily to antibodies.  After antibodies, we will have Emily on the DFMO trial that Dr. Sholler has, but that is to talk about when we get there. 

We are hopeful that with this round of chemo that her counts do not drop below 500 because if they do, she will not be able to go to school. It is likely that they will drop, but we will still remain hopeful. We did explain that to her, but we will see how things go. It has been absolutely amazing not seeing Emily laying on the couch these past few weeks, Dad and I have seen Emily run and play, laughing and having a good time.  It has been amazing and watching the energy she has. Yesterday we spent almost a full day playing outside, and the girls running and having a good time, and it was great to be outside with them and let them have fun (besides worrying about the West Nile). We didn't think she would make full days at school this past week, but we did and we are just so amazed that she did so well. Emily had her PFT on Friday, which was quite interesting, but she did pretty well with it.  We learned that Emily is 30 pounds, that is right, she is 30 pounds.  She hasn't been 30 pounds since diagnosis back in December of 2010, so we are hopeful that we can keep this weight up. 

So, please send all your positive thoughts that this round of chemo knocks out the 3 spots left and that Emily handles this round well. We also want to continue to thank all of the amazing people out there who continue to think of Emily and our family and for sending your thoughts and love to us, they mean so much to us.  Thank you again for all that you do.
Good night.  We will keep you up to date on how Emily is doing this week on the 7th round of the Nifurtimox Trial.  Remember to hug and kiss your kids and tell them how much you love them.

September is Childhood Cancer Awareness Month, spread the awareness.


  1. YAY ....sounds great to hear such positive news...you ROCK, Miss Emily!!!!!

    Julie Hamlett

  2. Yay, so glad to hear such positive news! You ROCK Miss Emily!!!!

    Julie Hamlett

  3. Great news! Praise GOD!

    Continuing to pray for you Emily. Keep strong girl and fight this thing. ;)


  4. Glad to hear everyone had such a great time at school.

    Ms Emily, I just love your hat collection. You and them are like totally awesome!!

    Take care of you :)