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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 (221-230):
ambitious_MOM
by Bronze Member on Jan. 20, 2013 at 6:42 PM
*hugs* keep your faith cause at the end of the day its God's decision what happens not doctors or anyone else.
Posted on the NEW CafeMom Mobile
melakay1981
by Platinum Member on Jan. 20, 2013 at 11:22 PM

She has brain cancer (grade 4 Glioblastoma) it is the most aggressive brain cancer there is.  There is only a 3% chance that it will not grow back, the first year is when it is most likely that it will.  Most do not make it past 14 months.  We are already 6 months since diagnosis. 

Quoting Anonymous:

I am kind of confused, is the cancer back? What type does she have? How do the dr know it will take her life by this year?


Quoting melakay1981:

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/ambers.prayerpage?ref=ts&fref=ts





melakay1981
by Platinum Member on Jan. 20, 2013 at 11:24 PM

I am so sorry to hear about your dad, none of it is fair :(


Quoting Anonymous:

Prayers for your daughter, you never know...there could be a miracle. My dad is losing his battle with cancer, and I fear this will be his last birthday. I know this cannot be compared with a child, but I am sad about something as well.



cassi_d_m
by on Jan. 20, 2013 at 11:26 PM
I'm so sorry. Prayers are with you and your family!
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melakay1981
by Platinum Member on Jan. 20, 2013 at 11:30 PM

I am so glad his tests came back good.  When my son was 3 (he is 6 now) I found a lump on his neck and they did a biopsy on it and I remember we had to wait almost 2 weeks for the results.  When I called for them the nurse knew the results but the Dr was not in so she could not give them to me, I started crying because I thought it was cancerous, but she assured me in a very strange tone (basically telling me that he was fine) that even if they where negative she would not be allowed to tell me.  With Amber I just kinda knew in my gut that it was going to be bad.


Quoting zebbyzebby06:

Prayers!!!
I was a wreck about a cpl yrs ago or so just when ds had to be tested for lukemia i was so scared a nervous.....i cant imagine what you are going through i pray for your baby (thy are always our babys) and for you and your family.

ds was negetive...ge was having bad bloody noses all the time..that is why he was tested.



zebbyzebby06
by Gold Member on Jan. 21, 2013 at 12:12 AM

 That was ds too, he was 3 and is now 6. Icant imagine going through all that. I will pray for your dd and your family.

Quoting melakay1981:

I am so glad his tests came back good.  When my son was 3 (he is 6 now) I found a lump on his neck and they did a biopsy on it and I remember we had to wait almost 2 weeks for the results.  When I called for them the nurse knew the results but the Dr was not in so she could not give them to me, I started crying because I thought it was cancerous, but she assured me in a very strange tone (basically telling me that he was fine) that even if they where negative she would not be allowed to tell me.  With Amber I just kinda knew in my gut that it was going to be bad.

 

Quoting zebbyzebby06:

Prayers!!!
I was a wreck about a cpl yrs ago or so just when ds had to be tested for lukemia i was so scared a nervous.....i cant imagine what you are going through i pray for your baby (thy are always our babys) and for you and your family.

ds was negetive...ge was having bad bloody noses all the time..that is why he was tested.

 

 

 

littlesippycup
by Ruby Member on Jan. 21, 2013 at 12:14 AM

Oh my gosh girl. Big hugs and prayers. 

melakay1981
by Platinum Member on Jan. 21, 2013 at 12:15 AM
1 mom liked this

Thank you


Quoting zebbyzebby06:

 That was ds too, he was 3 and is now 6. Icant imagine going through all that. I will pray for your dd and your family.

Quoting melakay1981:

I am so glad his tests came back good.  When my son was 3 (he is 6 now) I found a lump on his neck and they did a biopsy on it and I remember we had to wait almost 2 weeks for the results.  When I called for them the nurse knew the results but the Dr was not in so she could not give them to me, I started crying because I thought it was cancerous, but she assured me in a very strange tone (basically telling me that he was fine) that even if they where negative she would not be allowed to tell me.  With Amber I just kinda knew in my gut that it was going to be bad.


Quoting zebbyzebby06:

Prayers!!!
I was a wreck about a cpl yrs ago or so just when ds had to be tested for lukemia i was so scared a nervous.....i cant imagine what you are going through i pray for your baby (thy are always our babys) and for you and your family.

ds was negetive...ge was having bad bloody noses all the time..that is why he was tested.



 



.3xBlessed.
by on Jan. 21, 2013 at 12:19 AM
I'm sorry for this :(
My nephew was 2 years old when he died of neuroblastoma in November. It is the most horrible thing to deal with and witness.
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melakay1981
by Platinum Member on Jan. 21, 2013 at 12:22 AM

I am so sorry.  I have met quite a few parents that have kids that have been diagnosed with neuroblastoma.  It is just so sad.


Quoting .3xBlessed.:

I'm sorry for this :(
My nephew was 2 years old when he died of neuroblastoma in November. It is the most horrible thing to deal with and witness.



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