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Mom Confessions Mom Confessions

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 (41-50):
melakay1981
by Platinum Member on Jan. 20, 2013 at 2:11 AM

We are making it extra special this year, she loves to shop so she got a bunch of gift cards for the mall for Christmas and we got her a $100 gift card for Justice (her favorite store) and a $25 gift card from her little brother from Bath and Body works.  She is going to have about 5 different stores to shop at, so me and her are going to spend the day at the mall on Tuesday.


Quoting Bird16_J:

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!






Shaybay218
by Bronze Member on Jan. 20, 2013 at 2:11 AM

This...and I will go to our father in Heaven right now to pray for you and your family! 

Quoting .Funfetti.:

Miracles happen everyday. Hold on to that hope tight, and give her the best birthday in the world. 


SkinnyWrapsDiva
by on Jan. 20, 2013 at 2:12 AM

No words can ease your sorrow but please know I will keep you and you beautiful baby girl in my prayers. My heart is aching reading this. Big Hugs to you my dear.

Anonymous
by Anonymous 6 on Jan. 20, 2013 at 2:12 AM
I'm so sorry. Don't give up hope. And enjoy every moment! I will pray that you get many more years to enjoy your sweet little girl...
DevinAnnesmom
by Sarah on Jan. 20, 2013 at 2:13 AM
No problem at all. I'll be praying for Amber and waiting for a positive update :-)

Quoting melakay1981:

Thank you, her name is Amber



Quoting DevinAnnesmom:

Oh my goodness :-( My heart is breaking for you. That has to be the hardest thing in the world to go through...every moms nightmare. All I can say is love that little girl with everything in you and fight for her. You haven't failed. The fight isn't over yet. I'll be praying for your daughter. May I ask her name?




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WesternNYmom
by Platinum Member on Jan. 20, 2013 at 2:14 AM

I am so sorry.

melakay1981
by Platinum Member on Jan. 20, 2013 at 2:14 AM

I will update for sure


Quoting DevinAnnesmom:

No problem at all. I'll be praying for Amber and waiting for a positive update :-)

Quoting melakay1981:

Thank you, her name is Amber



Quoting DevinAnnesmom:

Oh my goodness :-( My heart is breaking for you. That has to be the hardest thing in the world to go through...every moms nightmare. All I can say is love that little girl with everything in you and fight for her. You haven't failed. The fight isn't over yet. I'll be praying for your daughter. May I ask her name?






mommieof3_752
by Gold Member on Jan. 20, 2013 at 2:15 AM

I am so sorry mama. I can not imagine how you are feeling right now. She sounds like a very strong child...she is trying to live life and make the most of it...that is an amazing thing. I honestly do not any words that could make a bit of difference right now. Enjoy her and love her just the way you have been....try not to let her see your pain and worry....just help her enjoy life and you enjoy it with her mama. I wish you and your daughter the best of luck. If you need someone to talk to you are more then welcome to message me. Im a good listener....sometime just talking about things can help. 

cjsix
by Platinum Member on Jan. 20, 2013 at 2:15 AM

 That says you have a very good children's hospital and a great doctor! Praying that God will show them what is needed to help your little girl and that you and your little one will have the strength you need for the coming weeks and months and will comfort you as you journey on this difficult path.

Quoting melakay1981:

St. Judes told me they would be doing the same thing that is being done at childrens hospital so they will not see her.  If it grows back I have the Dr's personal cell phone number and I am to get back to him immediately if it grows back

 

Quoting cjsix:

 huggingHugs Momma...I'm so sorry. cancer is a terrible opponent to fight against. Have you checked with St.Jude's Hospital?

 

 

 

Bird16_J
by Gold Member on Jan. 20, 2013 at 2:16 AM

Heck yeah!!! That sounds like an awesome birthday!!! Super jealous she gets to go shopping especially Bath and Body works! One of my favorite stores!!! lol I'm sure she's going to have a wonderful time!!! You'll have to tell us how her b-day goes! I'm actually really excited for her!!

Quoting melakay1981:

We are making it extra special this year, she loves to shop so she got a bunch of gift cards for the mall for Christmas and we got her a $100 gift card for Justice (her favorite store) and a $25 gift card from her little brother from Bath and Body works.  She is going to have about 5 different stores to shop at, so me and her are going to spend the day at the mall on Tuesday.


Quoting Bird16_J:

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!








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