Monday, October 21, 2013

Pray for Healing

*** DAY +12 POST TRANSPLANT ***

     Aaron, Hazel's Daddy came for a visit yesterday, and he brought out the first smiles I have seen from our little Hazelnut in over a week.  It was so wonderful to see!  She was still pretty tired and unwell, but we had quite a few moments where we saw her spunk shining through.  She played for a little while and spent some time just being silly, and it was absolutely glorious. I savored that moment because these last few days have been exhausting!  Hazel is not sleeping very well at night, which means I am not either.  So we have two tired ladies trying to navigate this world of transplant.  I think we both are done with it!  Today, her smiles have faded, she does not want to get out of bed, and just looks all around bummed out.  The GCSF serum that is used to boost her white counts can make her feel achy and have bone and joint pain, and since her counts are up, they are discontinuing it.  So hopefully she will be in better spirits tomorrow. Although her counts have been absolutely outstanding (praise God!) and her mouth is looking better, she still seems quite uncomfortable.  I have tried to get her to eat and drink, but she says it is too painful.  I am sure that it still doesn't feel good, but I think it has now become an anxiety issue.  Because she has been in so much pain over the last week, she is now terrified to swallow anything.  This even includes her own saliva, which keeps pooling in her mouth and she is drooling like nobody's business.  The mucous is no longer as thick and she is no longer gagging on it, so her sores are getting better, but we are not quite there yet.  She also seems afraid to urinate and pass a bowel movement, so it's yet another thing for us try and treat and to be worried about.  They tested her urine for any signs of infection, but thankfully it all came back negative!  She has been complaining that her tummy hurts quite a lot, which I assumed was from the mucousitis; but today she said her tummy had "too much" in it.  So I asked the doctor if the IV nutrition (TPN) that she has been receiving can make her feel uncomfortably full, and they said it is definitely a possibility.  So they are lowering her dose of TPN and I hope she may feel a bit better and will want to start eating something again.  With her counts being as high as they are, the doctors advised that we start weaning her off of the TPN and morphine with the hopes to slowly get her back to normal.  If this can all happen successfully, we may be heading home early next week!  Please pray for this to happen and please pray for healing.  It has been so hard to see my quirky, energetic, silly and joyful girl be so down and out.  I don't want to see my baby hurting anymore!  And I have not seen my other children since October 2nd and am yearning for their hugs! 
        

27 comments:

  1. I'm praying this sweet child will feel better and find trust that food will taste good and her tummy feels better real soon. She has endured so much. It'll be nice when you go home where she can be a child and sister again in her mind and heart. God Bless you all. You keep up the faith and believe in your doctors. They seem wonderful.

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    1. I feel so sad for Hazel and hope she feels better soon and I know as a mom with a sick child it is hard for you and makes you sad because you have little control over what is happening I've been there and even though my daughter is grown up we will be heading to the hospital for some more test tomorrow and I will be there right by her side I wish the best for Hazel, you, and the rest of the family you will always be in my prayers.

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  2. We will keep praying for you and Hazel. May God bless you both and then rest of the family!

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  3. Lil hazelnut is in sure prayers through all thing in Jesus it will get better she's a fighter

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  4. Prayers continue. God Bless little Hazel.

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  5. praying for you both.

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  6. Oh, baby girl, you can do this!!! Prayers for you and mommie. Stay strong!! Hearts!

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  7. You need to try this new product I saw called Phytodefense. I don't know if it works or not, but it looks like it is very healthy to take and might boost her immune system. I pray for little Hazelnut!!!!! She is beautiful and I pray she gets better soon!

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  8. Praying things get better soon. But at least it is looking up a little at a time!

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  9. Hazel, I check your page daily to see how you are doing. You look so sad, I know its the medicine. I am praying very hard that you kick that Cancer. Also I would really love to see your smile, so I will also pray that the medicine stops hurting you. STAY STRONG PRAY HARD

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  10. I am praying for you and your family. I can only imagine what it is like to not to be able to be with your other children. I am sure little Hazel misses them too. When she gets home I am sure she will be much happier. All the things Hazel has endured and she just keeps on keeping on....................she is so amazing!!! God Bless you all!!!!

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  11. I wish I can take her pain, no child should have to suffer. Stay strong beautiful Hazelnut. I'm praying for you baby girl.

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  12. Still praying for your precious Hazel every day, and I send her my strength. Try to stay positive, and remember that you have so many praying for Hazel's complete healing and also that your family will all be together at home soon!

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  13. Hazel and her family are in our prayers.

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  14. Prayers for Hazel. Not only do we share the same hometown, but we share the same diagnosis. I had a neuroblastoma on my kidney and ureter when I was 2. 5 years of chemo and radiation later and I was considered cured. I am now 47 and am an RN. I pray for you Hazel, and hope you know, God makes those of us with NBs stronger than other people.... you got this

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  15. look for me if you want on FB Karie Houck-Harder. There is also a neuroblastoma survivor page on FB if you have not found it already.

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  16. So sorry your sweet baby is having to go through this and I know it breaks your heart. Praying for Hazel's healing and that she gets to go home. God bless you and all the family!!

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  17. Hazel, You are so strong and I am praying for you and your family. Keep up the good work and get back to your silly self. I also want to remind you how beautiful you are even though you don't wan tot smile right now. You are truly a miracle from God and I can't wait for you to get better so you and your mommy can go home.

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  18. Well it's another hurdle you and us all face. Sounds like she's just about to turn it all around. I'm sure you are missing your family so much but you must focus on your little Hazelnut. Good news is just around the corner and of course me and Arla are praying for Hazel. All our love to you all. Susie Fein

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  19. We are praying for Hazel. She's almost there so just a little while longer. All our love Susie and Arla

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  20. Fast and speedy. You are almost there. Stay strong

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  21. Keep the faith little sweetie....Praying for you and your Mommy.

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  22. Stay strong. May God bless your family.

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  23. Little Hazel,
    I'm sending you the biggest hug ever. I have two little girls and you are just about between their ages. You are loved and prayed for everyday; God and His angels are watching over you.

    Get well little princess!

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  24. My best wishes and prayers for little Hazel, may god pure her

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  25. Keep Going! That's it...just keep going!
    peter hastings

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