Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

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

Posted by   + Show Post

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 (31-40):
EmilyWilsonn
by Bronze Member on Jan. 20, 2013 at 2:05 AM
I'm so sorry you have to go through this, and I sincerely hope she pulls through. I don't know if this is any consolation, but a friend of mine was diagnosed with cancer at 13, and through a rough patch she was said to not live past her 15th birthday. She's 24 now and very much alive and cancer free!

You have not failed, you are doing everything you can and are a great mother for caring and loving your baby so much. I wish your daughter a smooth recovery!
Posted on CafeMom Mobile
JrsMommy07
by on Jan. 20, 2013 at 2:05 AM
I am at a loss for words :-(... hugs and prayers moms no parent should have to go through this
Posted on the NEW CafeMom Mobile
Anonymous
by Anonymous on Jan. 20, 2013 at 2:06 AM

Praying for you and your family. 

Bird16_J
by on Jan. 20, 2013 at 2:07 AM

You are very welcome!!! That's the least I can do for you! So many hugs and prayers to you guys! I hope she has a WONDERFUL birthday! Happy Birthday sweetheart! You are an amazing young lady and this will be the best birthday yet!

Quoting melakay1981:

Thank you and yes prayers are welcomed


Quoting Bird16_J:

I am so very sorry momma! Hugs to you and to her! Just live everyday the best you can! I'll be sending you lots of good thoughts and prayers  for both her and you that things will be alright!





Anonymous
by Anonymous on Jan. 20, 2013 at 2:07 AM

(((HUGS)))

If her last one back clean, isn't there a good chance this one (on the 31st) will too? I'm confused...

Take it one day at a time.

melakay1981
by Platinum Member on Jan. 20, 2013 at 2:07 AM

Things like this do give me hope that the Dr's are wrong....Thank you


Quoting EmilyWilsonn:

I'm so sorry you have to go through this, and I sincerely hope she pulls through. I don't know if this is any consolation, but a friend of mine was diagnosed with cancer at 13, and through a rough patch she was said to not live past her 15th birthday. She's 24 now and very much alive and cancer free!

You have not failed, you are doing everything you can and are a great mother for caring and loving your baby so much. I wish your daughter a smooth recovery!



Kathy112761
by on Jan. 20, 2013 at 2:08 AM

So sorry to hear this, just live and cherish each and every day, keep fighting, miracles happen every day. Keeping you and your daughter in my thoughts and prayers. 

melakay1981
by Platinum Member on Jan. 20, 2013 at 2:09 AM

This cancer (grade 4 glioblastoma) is the most aggressive brain cancer there is.  Every scan that comes back clean is great, but there is only a 3% chance that it will not grow back within the first year.  Most people with this only live around 14 months, we are just now 6 months into this.


Quoting Anonymous:

(((HUGS)))

If her last one back clean, isn't there a good chance this one (on the 31st) will too? I'm confused...

Take it one day at a time.



MommyLove23
by Silver Member on Jan. 20, 2013 at 2:09 AM
I will be praying for her and your family every day..Stay strong mama.
Posted on the NEW CafeMom Mobile
ColleenF30
by Lube Girl on Jan. 20, 2013 at 2:11 AM

I am so sorry Mama *hugs*. Enjoy every moment...that is the only thing I know.

Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)



Featured