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Neuroblastoma - 3 1/2 year old was just diagnosed!

Posted by on Aug. 12, 2009 at 10:02 PM
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I just want to share my story so far.. It has only been a week, but my life has changed so much! Last week, August 4, 2009, my life changed forever. We found out my dd has neuroblastoma.. Last wednesday they did surgery on my darling Kayleigh and removed a 2inch tumor from her adrenal gland. She also has lesions all over her bones, and the cancer is present in her bone marrow. They also believe it may be in her spinal fluid, they just did the spinal tap today. She is stage 4 and high risk. She is starting her chemo tomorrow around 9:00 a.m. How can something this awful happen so sudden? We thought we were taking my dd to the doctor last Monday to have a black eye looked at, and were questioned about the black eye being from child abuse! Come to find out all the symptoms she has been experiencing the past couple months, including the black eye, were all from the cancer. It was very difficult the first few days to deal with everything.. We have been in the hospital since last Tuesday and it is predicted we will be here at least another 2 weeks. Then we may get to go home for a week, just to come back for another 3 weeks. It is going to be a continuous process until it's all over with. She will get her aggressive chemotherapy, then 2 bone marrow transplants.. possibly some radiation after that. I know my baby girl is strong, and I know God is with us during these hard times. I know in my heart we can make it through this! If you want to hear her full story, I have been updating a blog every single day on my myspace page: www.myspace.com/valerieandkayleigh and she also has a facebook group called "please pray for Kayleigh Justice." To all the other parents out there struggeling through childhood cancer, please know that with God, all things are possible! HE has promised us healing and strength, but we must first believe, and have faith. If anyone out there needs to talk, I'm online a lot as there isn't much else to do when your in a hospital. It keeps my mind off things sometimes. I will keep everyone of you in prayers! God bless!

This is my daughter only 5 months ago in March. It was her 3rd birthday and she was symptom free. We had no clue as to what was going on inside her little body at this time. **Mommy loves you so much baby girl! You will be better soon!!**


This is my dd now.. I wish there was something I could do.. I wish I could take her place. But I have put it in God's hands and I have faith she will be better soon!


by on Aug. 12, 2009 at 10:02 PM
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Replies (1-4):
BrendaChas3
by Member on Aug. 13, 2009 at 4:16 PM

First, let me say how adorable your daughter is!  Secondly, I am sorry to hear about her diagnogis, but I am glad you joined this forum!  I think once you get pasted the diagnosis, you focus on your child getting well.....and it sounds like you are focusing on the right things.  I'll pray that her treatments go well and her numbers stay high! 

I have a 3 1/2 old son who is now cancer free.  Thank God!!

Brenda

sweetsurprises
by New Member on Aug. 14, 2009 at 8:11 AM

I'm so sorry you are on this journey now.  Where are you located?  My prayers are with you and yoru family - the one thing I do recommend - hold her as much as she'll allow, take lots of pictures - take video of her talking to you...and when she feels up to it - do artwork items that include her hand and foot prints...

Hugs..Teri

cp:johnathondoerr

Sweet Surprises by Teri
www.sweetsurprisesbyteri.com


Did you know that September is Childhood Cancer Awareness Month?  Please wear a gold ribbon in support of our children.  Find out more ways to help at www.johnathonsrainbowroad.org


 

Eris822
by Group Owner on Aug. 14, 2009 at 12:53 PM

Isn't it funny how they always suspect child abuse first? We had the same issue when my son was diagnosed. They thought he had shaken baby syndrome.. turned out to be medulloblastoma. I can only tell you that it doesn't get better, it gets easier.

I say it doesn't get better, because... honestly, it doesn't. At least not for a long time. You still will worry. Once you get into a groove, it becomes very manageable and you just work it into your every day life so that it's like going to the grocery store. You automatically just do things the "cancer way" instead of the way you did them before. I still do and my son is now 2 years post transplant.

I'm really not trying to add to your load, just trying to give you a base for coping. We're not an active group here, but we're all sisters fighting a dragon that we should never have to see in our babies. If you need us, we'll be here.


PoeDunkMae
by Member on Sep. 2, 2009 at 12:06 PM

Just wanted to let you know that you are not along with dealing with Neuroblastoma.

I have a 4 month old son who was just diagnosed with it as well.


His started in his adrenal gland as well, and is in his liver at the moment.  He hasn't needed any chemo yet and we're praying he won't.

You have a beautiful little girl and I'm sure she'll fight through this!

Mae

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