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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 (661-670):
skagley
by on Jan. 24, 2013 at 1:34 AM

I know you have had a ton of replies, but I wanted to add my two cents. I am a breast cancer survivor. When I was diagnosed, the outlook was dismal at best. I was 29, a single mom to a 2-year-old (my world), and I was terrified. I lost several aunts to breast cancer, and I lost my grandfather to a glioblastoma. I understand, to a degree, what you are going through - at least, what your daughter is. 


I do not know your beliefs prayer-wise, but my entire medical team is convinced that it was a miraculous healing. I agree with them. We began praying the day I was diagnosed, and we haven't stopped. I've been cancer free for almost a year - after 7 operations, 5 months of chemotherapy, and 28 radiation treatments. My cancer was so severe I had to have chemo to reduce the tumor's size before they could do surgery. At 30-years-old and with only one child (and a desire for more), I had to also have a complete hysterectomy to prevent the possibility of metastases to my ovaries (a path that killed an aunt AND cousin). 


I tell you all of that to share this...prayer can and does work if you believe. It's not 100% foolproof, but it is worth trying. Visit http://www.churchofthehighlands.com/ and submit a prayer request. I think it is under the Resources link. We have a MASSIVE prayer team of over 1,000 individuals (big church). I'm not sure of the exact number, but I know it's HUGE. I submitted prayer requests weekly through my treatments, for every surgery, each step. I have no doubt that it was the grace of the God I believe in that spared me from complete misery and sickness through my chemo treatments and that gave my daughter and I what we needed in the way of support during the process. I still ended up losing my job when my medical leave expired, and I'm struggling with several health issues as a result of the drastic treatment I underwent (the most grueling chemotherapy drugs on the market - they don't call it the 'Red Devil' for nothing!!) I still have to have semi-annual echocardiograms for heart damage, and I will the rest of my life. I have reached my life maximum for radiation treatments because of the type of radiation I received...and I'm still standing, and on the inside, I am a much stronger woman than I ever imagined I could be. 


I give you both a huge hug. I will be praying for this sweet girl, and I'm joining the facebook page. If you would like, PM me your address (if you feel comfortable), and I'll send her a little gift...and take the perspective that she is already a survivor-in-training...it makes it easier to cope when you look at it that way. Much love to both of you, and if you need to talk, please feel free to contact me any time. I'll be happy to talk, text, Skype - whatever you need to help you get through this!!


(ETA: Since you mention nutrition supplements, look into CoQ10, too!! I know it has shown good results with breast cancer, although the research is still limited. It causes the cancer cells to enter apoptosis, a self-destruct sequence, so they kill themselves without affecting the surrounding healthy cells. http://en.wikipedia.org/wiki/Apoptosis It is a little pricey, but you can find it on Amazon.com for a more affordable price. )

melakay1981
by Platinum Member on Jan. 24, 2013 at 1:44 AM

Thank you for your kind words, I am so sorry for everything you have been through.  I honestly think I have prayed more in the past 6 months than what I have my whole entire life.  I have been very positive through most of this but there are just some days where the fear is so overwhelming.  I have noticed that I seem to get scared around the time of her MRIs and close to holidays and important dates such as her birthday.  I will be submitting a prayer request like you suggested, she is on many prayer chains around the world.  That was something that was very important to me and the main reason I went public with her story and started the Facebook page.  We set up a PO box for her, her address is

Amber Mardis

PO box 31

Mineral Point, PA 15942


Quoting skagley:

I know you have had a ton of replies, but I wanted to add my two cents. I am a breast cancer survivor. When I was diagnosed, the outlook was dismal at best. I was 29, a single mom to a 2-year-old (my world), and I was terrified. I lost several aunts to breast cancer, and I lost my grandfather to a glioblastoma. I understand, to a degree, what you are going through - at least, what your daughter is. 


I do not know your beliefs prayer-wise, but my entire medical team is convinced that it was a miraculous healing. I agree with them. We began praying the day I was diagnosed, and we haven't stopped. I've been cancer free for almost a year - after 7 operations, 5 months of chemotherapy, and 28 radiation treatments. My cancer was so severe I had to have chemo to reduce the tumor's size before they could do surgery. At 30-years-old and with only one child (and a desire for more), I had to also have a complete hysterectomy to prevent the possibility of metastases to my ovaries (a path that killed an aunt AND cousin). 


I tell you all of that to share this...prayer can and does work if you believe. It's not 100% foolproof, but it is worth trying. Visit http://www.churchofthehighlands.com and submit a prayer request. I think it is under the Resources link. We have a MASSIVE prayer team of over 1,000 individuals (big church). I'm not sure of the exact number, but I know it's HUGE. I submitted prayer requests weekly through my treatments, for every surgery, each step. I have no doubt that it was the grace of the God I believe in that spared me from complete misery and sickness through my chemo treatments and that gave my daughter and I what we needed in the way of support during the process. I still ended up losing my job when my medical leave expired, and I'm struggling with several health issues as a result of the drastic treatment I underwent (the most grueling chemotherapy drugs on the market - they don't call it the 'Red Devil' for nothing!!) I still have to have semi-annual echocardiograms for heart damage, and I will the rest of my life. I have reached my life maximum for radiation treatments because of the type of radiation I received...and I'm still standing, and on the inside, I am a much stronger woman than I ever imagined I could be. 


I give you both a huge hug. I will be praying for this sweet girl, and I'm joining the facebook page. If you would like, PM me your address (if you feel comfortable), and I'll send her a little gift...and take the perspective that she is already a survivor-in-training...its makes it easier to cope when you look at it that way. Much love to both of you, and if you need to talk, please feel free to contact me any time. I'll be happy to talk, text, Skype - whatever you need to help you get through this!!



skagley
by on Jan. 24, 2013 at 1:58 AM

Special days are especially hard, even once she gets past this, they still will be. They are for me, anyway. Hang in there Mama. You are both very strong ladies, and you WILL beat this. I have faith. I'm in Central AL...I'll put something in the mail for her Friday (I'm having a procedure tomorrow), so keep an eye out and shoot me a private message or hit me up on FB when she gets it.  (hugs)

melakay1981
by Platinum Member on Jan. 24, 2013 at 1:59 AM

Good luck to you tomorrow, I will say a little prayer for you tonight and I will let you know as soon as she gets it.


Quoting skagley:

Special days are especially hard, even once she gets past this, they still will be. They are for me, anyway. Hang in there Mama. You are both very strong ladies, and you WILL beat this. I have faith. I'm in Central AL...I'll put something in the mail for her Friday (I'm having a procedure tomorrow), so keep an eye out and shoot me a private message or hit me up on FB when she gets it.  (hugs)



angiepangie727
by Member on Jan. 24, 2013 at 1:25 PM

One of the best things about this website is the support you find when you need it most.  While nobody who hasn't dealt with a child having cancer can ever truly understand your pain, we will all, I am sure, support you, be the rock you need, and the shoulder you can cry on anytime you need it. 

Nobody ever understands why cancer happens. We probably never will, at least, not in our lifetime. Please keep your head up, put on a happy face for your daughter, and come here to us when you need to break down. I hope that your daughter goes through this okay. If she doesn't, we will be here for you then too. Good luck, Momma. group hug

melakay1981
by Platinum Member on Jan. 25, 2013 at 3:39 AM
1 mom liked this

Thank you so much, i am so thankful for the support I have gotten from everyone here.


Quoting angiepangie727:

One of the best things about this website is the support you find when you need it most.  While nobody who hasn't dealt with a child having cancer can ever truly understand your pain, we will all, I am sure, support you, be the rock you need, and the shoulder you can cry on anytime you need it. 

Nobody ever understands why cancer happens. We probably never will, at least, not in our lifetime. Please keep your head up, put on a happy face for your daughter, and come here to us when you need to break down. I hope that your daughter goes through this okay. If she doesn't, we will be here for you then too. Good luck, Momma. group hug



melakay1981
by Platinum Member on Jan. 25, 2013 at 3:43 AM

Me too


Quoting -mamas-:

I'm so glad to hear that! I hope it works as well as im hearing it does!!


Quoting melakay1981:

I found a juice on amazon.  My husband is ordering 2 cases of it as we speak.



Quoting -mamas-:

I don't know where you can get it in the states (I've heard Florida), but Soursop fruit is said to help fight against cancer. It'd be worth looking into.



I will pray for the best for your dd! Happy Birthday to her!





Quoting melakay1981:

Believe me you do not sound stupid, she loves fresh fruits and fresh veggies, she eats those as snacks every single day.  I have been looking like a crazy women for plums because I read about a study that was done with them and it showed great results.




Quoting markswife03:

I'm sooo sorry! I really hope a miracle occurs!





There are so many cancer fighting/prevention fruits and vegetables out there. I wonder if it would help to fill her up with those? I know, I sound stupid, but just want to help in some way.













Sassy762
by CAFE SASSY HBIC on Jan. 25, 2013 at 3:45 AM
1 mom liked this

(((HUGS)))

I am so sorry............

Prayers and healing thoughts coming your way

melakay1981
by Platinum Member on Jan. 25, 2013 at 3:46 AM
1 mom liked this

Thank you


Quoting Sassy762:

(((HUGS)))

I am so sorry............

Prayers and healing thoughts coming your way



ab51304
by on Jan. 25, 2013 at 11:12 AM

I have some information regarding treatments for cancer which are not allopathic.  If you would like this information, please let me know.  I hope the best for you and your family, especially your lovely daughter.  my email is ab51304 at aol dot com.  I would love to share the information with you.  It is backed by medical journals from all over the world.  God bless and good luck.

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