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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Saturday, May 19, 2012

Update of Week

Its been a long week, of which last weekend I broke my ankle, so it has made the week even seem longer.  Emily is doing well, her WBC and ANC have been great this week, however, her platelets and hemoglobin have been a little on the low side.  Not low enough to cause for transfusions, but also not enough to start chemo (her 3rd round) yet.   She will go back Monday morning to have counts checked and see where things are.  She was last checked on Thursday and her hemoglobin had dropped a bit so it could be a possibility she may need a transfusion Monday.  Who knows at this point though.

Emily turns 5 on May 30, and she is so excited. If you interested in sending Emily birthday cards (because she loves mail), you can send them to 
PO Box 5383
Midlothian, VA 23112

We are celebrating her birthday party tomorrow and thank you so much to Fairy Godmother Project, the Richmond Chapter, for helping making it all possible for Emily to have to have the best birthday party! Emily will have a surprise, this is been something that she hasn't been able to do since she was in school at CCDC back with all her friends, so she is going to be really excited when The FunBus pulls down our road. Thank you to Karen for going the extra mile in making sure that the FunBus is extra clean for Emily so she won't get sick.  Fairy Godmother Project wasn't done there, she also helped get a Moon Bounce House for Emily that will be here tomorrow and Laura from FGP is also going to make Emily a Princess Cake.  Thank you again Fairy Godmother Project for making this a wonderful day for Emily. 
TO ALL OF EMILY'S FRIENDS from CCDC, I couldn't reach all of you, if you read this and would like to stop by, please email me at ShannonHubbel@hotmail.com.  The party is tomorrow (Sunday, May 20th) at 1pm!!!!

Thank you also goes out to Emily's and our good friends Sue and Jojo. They made a long trip yesterday from Pittsburgh, PA to come and be with us this weekend.  Today in a little bit we will be leaving to head to Jessie's HipHop Recital and see her dance.  Pretty excited to see her dance, and family and friends will be there to watch. While we are at the dance recital at the high school, there will be some games going on in the fields in which I learned earlier in the week, that there is a wonderful mommy whom we have never met and her amazing kids are doing an Alex's Lemonade Stand Foundation for Childhood Cancer in honor of Emily! Emily counts will be good, so she will be able to go and see her sister dance and also see the kids who are doing this in Emily's name. Thank you Heather.

If you are interested in donating to an amazing foundation, please do so here in honor of Emily, 
http://www.alexslemonade.org/mypage/82521

Lastly, many people are writing to the governments in their area to make a difference about childhood cancer.  I honestly hadn't thought about sending one out with all that is going on, until I saw many people were writing to the Governor of Richmond and mentioning Emily's name.  So here is my letter:

May 18, 2012

Shannon Hubbel
Mother of Emily Hubbel

Governor Robert F. McDonnell,
office of the Governor
Patrick Henry Building 3rd floor
1111 east Broad street
Richmond, Virginia 23219
Dr. Mr. McDonnell,
I am writing you today to tell you about my daughter Emily Hubbel, and many other kids in the Virginia area who are fighting a childhood cancer.  Emily was diagnosed 12/23/2010 with a rare childhood cancer that forms in your nerve tissues, neuroblastoma.  There are many other children in the Virginia area, such at Wes, and Emma, Connor, Drew, Meesha and many other names that have a childhood cancer.  Childhood cancer robs these kids of their childhood, and Emily would be the first to tell you this.  She was diagnosed when she was 3 years old and now at almost 5, she lost a whole year of her being a toddler enjoying life and playing, rather in the hospital.  She is still battling this horrible disease that many other children pass away from. To name a few that have passed away would be Hayley, Trevor, RJ, Ila Jean, Krysten and many many more.  Do you know why these kids are passing away?  These children have passed because there is a lack of funding from the government for these rare childhood cancers, lack of treatments that are available because of no funds.
I did read your bio and see that you have 5 kids all whom are healthy and over the age of 20 and how important schooling is to you.  A healthy child is definitely what I would like for my daughter and all these other kids fighting childhood cancer.  Many people are writing to the governors in each state trying to reach the government and make it known how important childhood cancer is just like Breast cancer is and we need some awareness to raise funds so that our children are not passing away.  I hope that we will see that you are the first governor to say, “I support Emily Hubbel in her fight against childhood cancer and all those other children and I will be the first to make this change!”  The government needs to protect our children .
The past 17 months my husband, Doug, and I, along with many other parents have had to make decisions to give our child poison that goes into their blood, chemotherapy, with hopes that it will clear this disease along with other treatments that may or may not work. Many families, like us, have to travel outside of our home areas to find doctors and hospitals that will treat our children, and these were decisions that many parents never thought they would have to make as a parent. As parents we thought we would be making the decision what kind of dress would she be wearing for dance, or watching them playing ball, or taking them to a father/daughter dance, instead many children are in hospitals laying in bed getting chemotherapy, or not feeling well or have fevers.  It is so hard to tell my other children who are 10 and 2 what is happening with my 4 year old and why these children are suffering the way they do and if we had the government to protect our children, there would be hopes.
As a mom who watches her daughter receive chemotherapy, I hope that this letter pulls a heartstring and I ask that you try to put you and your wife in the shoes that my husband Doug and I are in. You can never put our shoes on and know what our children go through, but I ask that you try to understand what so many kids deal with on a day to day basis living with childhood cancer.  I beg that you be the first to stand up for what you believe in, and support childhood cancer, so that we can have more awareness, more funding and more treatments.
Thank you for taking the time out to read my letter, if you would like to speak personally with me, you can reach me at  XXX-XXX-XXXX or by email at ShannonHubbel@hotmail.com.

Best regards,

Shannon Hubbel
Enclosures
We will continue to keep you all updated on how things are going and provide lots of pictures from Emily's birthday party.

Have a great Saturday.

3 comments:

  1. Happy Birthday to Emily! My son Chris is going to the Alex' s Lemonade Leadership Camp this summer. It would be wonderful for our family to support Emily' s stand. Chris has had several friends have cancer.
    I am keeping you guys in prayer. Sorry to hear about your foot.
    Michelle Gruber, RN ( mom too)

    ReplyDelete
  2. Happy Birthday to Emily! My son Chris is going to the Alex' s Lemonade Leadership Camp this summer. It would be wonderful for our family to support Emily' s stand. Chris has had several friends have cancer.
    I am keeping you guys in prayer. Sorry to hear about your foot.
    Michelle Gruber, RN ( mom too)

    ReplyDelete
  3. Emily,
    I hope you had an amazing birthday party and you were feeling well.

    Praying and praying for you often.
    <><

    ReplyDelete