anaplastic astrocytoma stage 111...young child

luvmyniece

My 12 years old niece was just diagnosed with anaplastic astrocytoma 2 days ago. Her parents were told she has 50% chance of surviving chemo and radiation....

Let me tell you her back story. Her name is Sydney, she has been a very active and healthy little girl. Saturday while playing with her friends, she phoned her mom to tell her she didn't feel good. In mid conversation Sydney collapsed. She was taken to a larger hospital via ambulance 2hrs away. After a CT scan Sydney's parents were told that she needed to be life flighted to a hospital in Denver. Moments later they were told it was too late and there was nothing that could be done to save Sydney. God had a better plan. Two local surgeons, decided to do the surgery in which they had NEVER preformed with the direction of another surgeon via satellite. The family was then told not to expect Sydney to survive to surgery. A tumor was found at the base of her skull, wrapping around her spinal cord. Sydney was on life support and the doctors again told her parents that she may never wake up. 2 days after surgery Sydney was off her vent and responsive. In just one week, she has sat in a chair, can talk, know what month it is, remember the day she collapsed and most of all she knows her family and friends. The news of this tumor has been very difficult for her family to hear. They are waiting for Syd to get stable enough to transfer to Denver and begin treatment. It's unclear what that will consist of. I've just began to research this, it scares me to read some of the "stats". However I know the lord is with Syd and her family. The doctors gave her a 0% chance just one week ago, and now look at her. Please pray for her and anyone with any advise or information you could share with me about AA 111 in young children would be very helpful. I'm going to do this for her parents as they are just so focused on Syd right now. May you all find comfort in the hands of our Lord.

momsworld

Hi there luvmyniece
I am so sorry to hear about your niece and her parents must be going crazy. My daughter was diagnosed with AA3. She had 2 surgeries to remove her tumor, she then did 35 radiation treatments and was on an oral chemo named Temodar. The 1st MRI after the treatments showed new tumor growth. That darn cancer was growing back during all that radiation and chemo. She had another surgery. The surgeon took her time and what was supposed to be a 4 hour surgery turned into an 8 hour surgery. While my daughter was recooping in the hospital, her doctors told us that there was nothing more for them to do and that my daughter was going to die. I got so mad at them for giving up that I told them all off and took her and her medical records out of that hospital. We are now going to the Jimmy Fund Clinic/ Dana Farber in Boston MA, they gave us hope. My daughter has been cancer free for 7 months, it doesn't seem that long to some, but to us it seems like 7 years. I am so glad that I put my mamma boots on and took her somewhere else. She might not be here now if I would have listened to the first hospital and now she is cancer free. I did the same as you with looking up this disease and it only made me more sad. I believe that statistics is just that, a bunch of #'s. Everyone and every treatment is different and what may work on 1 person, may not work on another. Just try to keep positive (I know it will be very hard) and trust in the lord, that is really what has kept me going. Without God in my life I would be in the nut house by now. Any questions that you may have, I will be totally willing to answer. Don't be afraid to ask.

PBJ Austin

momsworld said:

Hi there luvmyniece
I am so sorry to hear about your niece and her parents must be going crazy. My daughter was diagnosed with AA3. She had 2 surgeries to remove her tumor, she then did 35 radiation treatments and was on an oral chemo named Temodar. The 1st MRI after the treatments showed new tumor growth. That darn cancer was growing back during all that radiation and chemo. She had another surgery. The surgeon took her time and what was supposed to be a 4 hour surgery turned into an 8 hour surgery. While my daughter was recooping in the hospital, her doctors told us that there was nothing more for them to do and that my daughter was going to die. I got so mad at them for giving up that I told them all off and took her and her medical records out of that hospital. We are now going to the Jimmy Fund Clinic/ Dana Farber in Boston MA, they gave us hope. My daughter has been cancer free for 7 months, it doesn't seem that long to some, but to us it seems like 7 years. I am so glad that I put my mamma boots on and took her somewhere else. She might not be here now if I would have listened to the first hospital and now she is cancer free. I did the same as you with looking up this disease and it only made me more sad. I believe that statistics is just that, a bunch of #'s. Everyone and every treatment is different and what may work on 1 person, may not work on another. Just try to keep positive (I know it will be very hard) and trust in the lord, that is really what has kept me going. Without God in my life I would be in the nut house by now. Any questions that you may have, I will be totally willing to answer. Don't be afraid to ask.

My sister's story
My sister is not a young child but I would like to share her story anyway. In December 2008 (at age 25) she started having trouble using her right hand as well has having dizziness. She had an MRI and the doc told her she had some tumors, none of which were operable. She got a second opinion from MD Anderson in Houston and they said they could operate, as they have more sophisticated equipment than most other hospitals. They were able to remove the largest tumor and sent it for pathology. The tests showed AA3, they told us she had 3-7 years to live and there will be no remission. They did chemo and radiation with the belief it would only prolong her life and not get rid of the cancer.

Well guess what? In less than a year she did go into remission!! Her first clear MRI happened in Feb 2010 and they have all been clear since. This doesn't mean the cancer is gone forever but for now we are celebrating the absence of cancer and enjoying every day she is not in treatment.

So here are the morals of my story:

1. Keep faith, no matter what you are told.
2. If you don't like what you are hearing, do not be afraid to seek a second opinion. And do not get that second opinion from someone your current doctor is referring you to, go to a completely unbiased source.

All the best to you and everyone on this board.

PS Hi momsworld, it's always good to hear from you!! :-)