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, April 23, 2011

Saturday, April 23, 2011

Emily waiting to go home and for the IV to finish

Thank you everyone for your wonderful wishes and your sweet thoughts of getting us home together as a family for Easter!  It is absolutely wonderful to be home all together!

Thursday we left the hospital about 130 pm after Emily getting one more double dose of GCSF and platelets. On the way home, we received a call from the sitter that Brianna had a temperature of 101.5! GREAT! Doug and I quickly got Emily home and I went to pick up Jessie and Brianna and take Brianna to the doctor! Thankful it was just an ear infection in the right ear and she has two teeth coming in on the top.  Awesome, it was nothing major and something that we dont have to keep the girls seperated. While I was gone with jessie and brianna, Emily was on the front porch with daddy waiting for me! As soon as I got home Emily was on me and wouldnt let me do anything, I was holding her and she was laying on me! Daddy even fixed dinner because Emily wouldn't let me get up and do anything!

Emily still doesn't have any energy and still sleeping a lot! She is easily irritated and upset quickly, actually Doug and I were talking and wondering if possibly she could be a bit down!  She is a mommy and daddy's girl and is all about us, but she just doesn't seem happy! We don't like to see her this way, it actually breaks our heart! We are still trying to get her to eat!  Dr. Kahn said she should be ready to start 5th round of chemo on Wednesday, I told him no it needed to at least wait until Friday! Emily has lost entirely way too much wait, she is a serious twig, we can see her ribcage and backbones and no way is she going to start round 5 which is the same as round 3 where she didn't eat for days and was throwing up constantly! They are crazy! So we started her back on periactin to get her appetite back while she is also taking single IV doses of GCSF and diflucan at home! She complained still a lot about her gums hurting, we also think she got some in her esophagus so we are going to do the Traumeel a little bit different this time! Still do it on the days of chemo 4 times a day and then 2 days after chemo since it is still in her body for at least 48 hours after chemo pump has stopped!  She did get another bleeding from the mouth the first night home, but I think it was where the one popped in her mouth and the next morning we didnt see any sores except for a little one! So Emily ate some eggs yesterday and lots of Organic Rice Dream milk and a little bit of macaroni and cheese organic last night!  (did I tell you it was so nice to have a home cooked meal last night? Doug and I really need to figure out stem cell transplant (bc Emily could be there from anywhere from 15 to 30 days)!

So again thank you all for the wishes of being home together!  Emily doesn't have enough energy to go camping this weekend so we are staying home and just enjoying each other!  It is a lil too much on Emily to go anywhere!

Thank you to my parents, nanny and pop for coming out for a few hours last night so that Doug and I could go out Easter shopping!  With all that has been going on we haven't been able to get the girls anything for Easter! So we went out last night and pretended   To be the Easter bunny! I think the girls will be happy and it wi be a great Easter! Nanny did call me after being gone about 2.5 hours that Emily had woke up crying for mommy! So we hurried home!

Please continue to pray for all those having to deal with this! Cancer is no joke and not fair to place such a burden on any child or adult! This has been a life changing ordeal that I dont wish on anyone! Please continue to pray!

Love this quote: "always kiss your children goodnight, even if they are already asleep!" by H. Jackson Brown

Happy Easter


  1. Aww poor baby! She must be a very strong & brave girl. You all are still in my prayers, I will not stop praying! Wishing you all a very blessed happy Easter. Lots of hugs & love from my family to yours! God Bless! 0:)

  2. Hello sweeetness. Hope you begin to feel better soon and hope you'll be able to eat something. You need all that food for strength! I will continue to pray for you little one and wish a miracle cure for you. I pray that God will cover you the blood of Jesus from the top of your head to the soles of your feet and heal your body. Love and hugs and wishing you a happy Easter from North Carolina. Stay strong little one. God is with you and watching over you.

  3. Awww..I just wanna give Emily hugs & loves, but not too tight, just soft ones!:)
    I hope you & your family have a beautiful Easter!
    ~Mippy :)

  4. Nikki, AustraliaApril 26, 2011 9:19 AM

    My 9week old son is having his 4th cycle of chemo tomorrow. You have been inspirational as you put into words the same feelings I have, the why, how, not fair etc. Plus the love, it is the positive thing keeping me sane! My love to from one mum to another and love to Emily xxx