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Update on Amber (12 year old with brain cancer) in orange at the bottom.

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Monday she will be 11, I do not know how to deal with this.  I feel like my world is crashing down around me today.  I sit here and look at pictures from when she was a baby and wonder "why", she is such a sweet, caring and smart kid who is so loved, why her?  I think about what I was doing 11 years ago at this time, I was getting ready to welcome her into the world and I swore I would do anything I had to to protect her and I have truly failed.  The cancer she has will most likely get the best of her within the next year.  I am not saying we are not going to do everything we can, but the Dr.'s do not have much hope for her.  I have no idea how to deal with this.  Right now if you saw her you would not know there was anything wrong with her, she even made the honor roll both marking periods this year, she is having a huge swimming party and is living everyday just like you or I would.  I just fear the future.  I just needed to vent for a minute.


I just wanted to thank everyone for all the prayers and kind words.  I will update as soon as I get the results which will hopefully be on the 31st.  Anyone who would like to add the facebook page I made for her is welcome to.  I update on there frequently and post pictures. https://www.facebook.com/Prayforamber


EDIT:  There are a lot of people wondering what kind of cancer it is, I probably should have put that in the post.  She has brain cancer (grade 4 glioblastoma).  To clear up any confusion, she had the tumor removed on July 2nd, she went through 33 radiation treatments and will be on oral chemotherapy for 1 year providing that she tolerates it (so far she has tolerated it well).  There is only a 3% chance that it will NOT grow back the first year.  We are 6 months into this, I think that is why I am so scared.  Even if it does not grow back the first year we will have this worry for the rest of her life.  Again thank you for all the prayers and kind words.  I wanted to add that she had her birthday party yesterday and she had a blast!  She got a bunch of gift cards so we are going on a shopping spree one day this week, she is so excited! 

Got some great news today!  Her MRI came back excellent!  We need a few more like this and then we can relax a little bit.  This is something that we will always have to be concerned with but I will take any victory we get right now.  I think she is going to be in the very small percentage of people who survive this long term.  I am feeling very positive right now.

Wanted to give an update since it has been forever.  Today was 1 year since her surgery and she is doing excellent.  Her next MRI will be on July18th and she is not having any symptoms at all that would make me think it is going to come back bad.

Her scan came back clean :)  but she had to stop chemo due to an allergic reaction that she had last month, she only had one round left and the Dr did not seem to be worried about stopping it early.  She is not completely out of the woods but this is really great news considering they only gave her a year to a year and a half to live last year.  Thank you all for your prayers and support through all of this.

Newest update

I have not updated on here in a really long time, things are not going to great for Amber :( The tumor grew back in October, they removed it and tried a vaccine clinical study.  She had another MRI scheduled for Jan 2nd and they found that the tumor had grown back in the same spot so she had it removed again.  Jan 22nd (the day after her 12th birthday she had another one removed, they tried a different chemo pill which failed her and the tumor grew back again in Feb.  We have decided to stop treatment , the cancer is just too aggressive and is not going to stop growing.

by on Jan. 20, 2013 at 1:53 AM
Replies (751-760):
whoodathunk
by Silver Member on Jul. 24, 2013 at 9:26 PM
1 mom liked this

I will pray for Amber and your family...I hope she is doing well!

melakay1981
by Platinum Member on Jul. 24, 2013 at 9:31 PM

She complained about her ear buzzing for a few hrs one day, we thought nothing of it.  a week later she was she was screaming at the top of her lungs that her head hurt.  Took her to the ER and they said it was migraines (they never ran any tests).  2 days later we took her to a different ER because she started screaming again except this time she was vomiting.  They did a CT scan and found a blood clot the size of an orange on her brain.  She was life flight ed to Children's Hospital of Pittsburgh, they did a test(cannot remember the name of it right off hand) to see if it was an aneurysm, it was not.  They had to do surgery the next day to find out why her brain was bleeding, they assumed it was a tumor and they were right.  It was removed and tested, now we just have to hope it does not grow back.


Quoting shajdinyak:

Prayers! do u mind me asking how you found out?



shajdinyak
by Silver Member on Jul. 24, 2013 at 9:35 PM
awful...I am so sorry:(praying for all of you!

Quoting melakay1981:

She complained about her ear buzzing for a few hrs one day, we thought nothing of it.  a week later she was she was screaming at the top of her lungs that her head hurt.  Took her to the ER and they said it was migraines (they never ran any tests).  2 days later we took her to a different ER because she started screaming again except this time she was vomiting.  They did a CT scan and found a blood clot the size of an orange on her brain.  She was life flight ed to Children's Hospital of Pittsburgh, they did a test(cannot remember the name of it right off hand) to see if it was an aneurysm, it was not.  They had to do surgery the next day to find out why her brain was bleeding, they assumed it was a tumor and they were right.  It was removed and tested, now we just have to hope it does not grow back.



Quoting shajdinyak:

Prayers! do u mind me asking how you found out?




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kristine8333
by Bronze Member on Jul. 24, 2013 at 9:39 PM
1 mom liked this
Yes youre right. Thank you. All my children have are pictures, our stories. Im glad your lo is doing better! Its truely a blessing!

Quoting melakay1981:

He is in a better place but that does not make it any easier on the people who miss him



Quoting kristine8333:

Thank you : ) i know he is in a better place where he can see & run. Im just sad that he is not here to see his neices & nephews.



Quoting melakay1981:

That is just awful :( I am sorry for your loss




Quoting kristine8333:

I am sorry to hear that and i can only imagine, wouldnt want to imagine any of my children going through that, for my brother died of the exact same thing your daughter has : (


His name was Bradley. My parents first found about the cancer when he was 15 months old (1983). He had a brain tumor. He had numbers & numbers of surgeries/mri's/cat scans/kemo & radiation. And some others that i cant think of. He became blind at 14 yrs old during one of those surgeries. During the 20 yrs he had cancer, i always seen him upbeat, never seen him complain, he tried making everyone else happy through the sadness. The childrens hospital was the best hospital. He just loved life. Everyone prayed. He was just the best big brother to me and our little brother. He died in 2002 at 20 and a half yrs old. It was the worst day of my life, i was in the same room. I can only imagine how my parents felt. I feel for you and wish that the cancer disappears! God bless you all!








skyelyns_mommie
by on Jul. 24, 2013 at 9:52 PM
Im very thankful. I will keep praying that all her MRIs come back good ;)


Quoting melakay1981:

Thank God it was not cancerous for you.  Amber goes for MRI's every 3 months



Quoting skyelyns_mommie:

I'm so happy for her ;) this is amazing news!! I will keep praying for her!!





To a point I understan. In 2005 after being sick for years I found out I had a tumor in my brain. I was blessed that it was not cancer only a fluid filled cysts that was putting pressure on my brain. I've had two surgeries, once in 2005 and again in 2008. Since then I have been in the clear though I still get MRIs every 6months.





kristine8333
by Bronze Member on Jul. 24, 2013 at 9:54 PM
1 mom liked this
You all are in my prayers as well

Quoting melakay1981:

She complained about her ear buzzing for a few hrs one day, we thought nothing of it.  a week later she was she was screaming at the top of her lungs that her head hurt.  Took her to the ER and they said it was migraines (they never ran any tests).  2 days later we took her to a different ER because she started screaming again except this time she was vomiting.  They did a CT scan and found a blood clot the size of an orange on her brain.  She was life flight ed to Children's Hospital of Pittsburgh, they did a test(cannot remember the name of it right off hand) to see if it was an aneurysm, it was not.  They had to do surgery the next day to find out why her brain was bleeding, they assumed it was a tumor and they were right.  It was removed and tested, now we just have to hope it does not grow back.



Quoting shajdinyak:

Prayers! do u mind me asking how you found out?




Anonymous
by Anonymous 54 on Feb. 5, 2014 at 3:00 AM
My dear, having read through and seeing her pictures really brought tears to my eyes.she's too lovely to let death snatch her away so soon.At this point dear,let's resort to Prayers ! Prayer works and miracles still exist. I know vividly of someone whom doctors and even science had written off, she was totally paralyzed and at the 4th stage of cancer too ! But with prayers, she went through all her chemo and radio courses, believe you me, she's still alive ! That's What prayers can do. So please dear,still believe in miracles for anything is possible.It is well

Quoting NanaMomo: I'm sorry :(



I can't begin to imagine the pain you're feeling..



Just be her rock now mama




Quoting melakay1981:

That is what we have been doing and normally I feel very positive, it just hit me really hard tonight




Quoting NanaMomo:

I am so sorry :(





Just spend every second with her and cherish it. Make happy memories.






bluebunnybabe
by Ruby Member on Feb. 5, 2014 at 3:04 AM
Somehow this is the first time I have seen your post. I'm so glad your daughter is doing well.
PandTsmomjuly
by Florence on Feb. 5, 2014 at 3:07 AM

way to go

khmom33
by Member on Feb. 5, 2014 at 3:18 AM

Miracles happen mama!! :) :) So happy to see she is beating this! 

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