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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Monday, May 16, 2011

Monday, May 16th update

I'm trying to look at the positive side of things but it is hard to when all I want to do is be a big baby and lay on the floor and scream, kick, punch someone or something because we just found out she is being admitted! When we got here her fever had gone down to 101.6 and the doctor noticed her left ear was red! It was our thought that she might have an ear infection and that be the culprit! But can't say for sure because her WBC is 1000 (.1) not yet able to register a ANC! This means she won't be ready for surgery this week!  My heart aches as this morning she was crying no fever I don't want to stay at the hospital! It's like being on eggshells shhhh don't say upstairs she may hear! Again o fear it will be benedryl again! 

Right now we wait for platelets because they were 7000 (.7) so she needs to get a transfusion! Then she will be admitted to a room and get another dose of antibiotics! She has received one here in clinic! Let's hope that this fever breaks and she will only be here for a few days!

Now the part that kills me is knowing next weekend is a holiday weekend and Emilys birthday on may 30th! Emily will now be scheduled for surgery on may 26th it sounds like! Which means she will be in hospital on her birthday! Several things suck for that.... Her wooden swingset will not be up and the birthday party for 4 gets old will not happen! I'm trying to be strong and hold together but it's hard to! Where is the wall that I can put a hole in, where is the tissue I want to cry in and Emily will not see! I know that things could be worse but this is hard on us!  Sorry for being upset but this is hard, hard on us, hard on Emily!

Will keep it updated on what's going on! They dis blood coultures also so those take 24 to 48 hours! Please send hood vibes for short time here, good vibes that dad and I hold it together and good vibes that Emilys counts rise quickly!

3 comments:

  1. Well Shannon I know this isn't much but when I am hit the bag tonight I will think of you. If I could just wave a wand and make this all go away I would. I am so sorry and I feel bad too that I can't help you. I want to be there for you Shannon. But for now I always think of you and your family!!! You and Emily both are so strong and she is so lucky to have a Mommy like you!

    Penny

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  2. I know you do not know me but I saw your story on another blog and have been following for a few months now. I know what you mean about how you HATE cancer, we lost my mom to a rare stomach/esophagus cancer on Dec.22 that was bad enough i can not imagine having to have a little one go through that it just makes me cry thinking about it! I know what you mean about having to be at the hospital my mom found out she had cancer in march 2 weeks after i had my first child, they immediately started a strong chemo/radiation combo to try to shrink it because surgery was not an option unless it shrunk so she went through that which was awful i HATE chemo too. They said it had shrunk and was no where else so a very serious, long surgery was scheduled in july to remove it at IU med surgeon came out soon after he started telling us it had spread to three areas and he could not get it all we told him to try his best and do what he could from then on the hospital was our life 2 weeks there home a week 2 weeks in hospital home a week then back in the hospital and 4 procedures later they gave my mom no hope and no more options and sent her to hospice where we lived for 3 1/2 months, sorry for the long story but i just wanted you to know that i truly understand how hard it is to be in the hospital and take care of the one sick but still have family at home that need you too, it is so hard and i pray for you guys daily! Just try to keep your head up and remember it is all in God's hands and he has a plan for us all! Keep helping Emily fight this awful disease she is the sweetest little girl with great determination in her. She will beat this! Keep your heads up and keep praying and know that others are praying hard too! Love, Michelle from Coloma,MI

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  3. Shannon I am so sorry! But just think how happy she will be when she finally gets to see that swing set. Lots of hugs to you all and praying for you all!!

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