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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Thursday, December 24, 2015

Dear Emily From Daddy

To Emily from Daddy,

Hi sweetie, I know you have been looking at your blog lately, so I thought I would write you something to remind you of how special you truly are. It has been 5 years since the doctors had told Mommy and I that there was something going on in your belly.  I am not really sure how to tell you in words about that day, but it was a very crazy time for everyone. Everything that you have been through over the years, you always have done it with your beautiful smile.

I remember when you asked me, “Daddy have you ever cried?” Yes, I have a bunch of times when I feel sad. when you didn’t feel good, when you were not able to do things the others kids would do. When you were sad inside, I was very sad too. But these days my tears are happy, when i watch you walk Brianna to class, when you received student of the year, your first cheer practice, when your team won the County Battle. Watching you grow up and become the little lady you are, how you are loving and caring to your little cousin Jenna, the bond you have with Aunt Tricia, the loyalty you have to your friends, and your passion for the things that are so important to you. I could go on and on!

I have learned so much from you over these past 8 years and I am very proud to be your Dad. 

We are so lucky to have someone like your Mommy in our lives, how devoted and caring she is to our family & whenever you didn’t feel well she was always an arms reach away. I just want you to know that no matter how old you are, how good or bad things may be or the path in life that you choose to take, Mommy and Daddy are right behind you. 

I just hope someday that you will be half as proud of me, as I am of you.

I love You very much, Merry Christmas


Wednesday, December 23, 2015

5 Years Diagnosis Date

 It's hard to believe that today marks 5 years from the date that we actually had a confirmation that Emily had cancer.!  Emily was diagnosed on 12/23/2010 with stage 4 high risk neuroblastoma. They had the hardest time actually making the diagnosis just because they felt some things were different than others, but New York Sloan Ketterling confirmed it was the correct diagnosed.

Doctors never gave us a promising outlook on Emily's diagnosis and said she only had 20%! To look back now I don't know if we ever knew that 5 years later that today Emily would still be here with the grim outlook on her life that was given.  We still worry that although we are at the 5 year mark that dad and I could be going through more grueling treatment with her and she not have more Christmas', other holidays and special events to enjoy together as a family. Emily deserves to have another 5 years and another 5 years after that.

While she has never reached No Evidence of Disease, her dad and I are happy with stable, but we still wait to hear those words so that it could means in hopes it could bring down some of our worries of knowing it can come back.

If you don't know Emily, she really is an amazing child! No her dad and I are no biased by any means, we just know who she is and what she is all about and that heart she is is above and beyond most children her age I know. As an 8 year old she knows more than most would her age, and she has lived and gone through more than most adults have.

For the last year and a half Emily has been on DFMO and has lived a stable life, living life to the fullest, attending school and even did cheerleader this year for the first time! We couldn't be more proud of her. We continue to visit the clinic on a monthly basis unless something comes up where we may need to make ER visits.

Today Emily is looking forward to Christmas with her family and happy that she is not in the hospital. She continues to think of the other children who are in the hospital fighting the fight! This post could go sad or happy and honestly I would rather see it happy because if you look at Emily she has that beautiful smile she always has!!

Please continue to keep Emily in your thoughts!!

Happy Holidays!