It's just not right

I am having a very hard time reading about the boy and his family that refused Chemo, so his Dr. decided to call in Children's Services and the boy was removed from his home. Then a judge stating that this child has no understanding of what he is going through since he is only 13 orders the child to receive Chemo. The chemo can kill the child before the cancer will, plus chemo for children is just watered down chemo they use on adults, so the doctor's and drug companies are all ready playing with our children's lives and making a huge profit as well. All this really bothers me a great deal. Primarily because my daughter Aimee was 12 and she was 100% aware of her illness with DIPG (diffused intrinsic potine glioma) or as most call it an inoperable brainstem glioma. She did so much research on alternative medicine, natural remedies, since conventional medicine said there was NOTHING they could do for her and she was going to die anyway why bother. Kinda like they didn't care, about her so they gave up and were willing to let her die. Should I have taken them to court for neglect as well. Since this has been forced into play, I feel it is just a matter of time before the courts and our government remove all rights of a parent when it comes to the care of their child.

This would then bring me to a new meeting of the FDA, with Doctor's who are now trying to put into play that they want to do biopsies on newly diagnosed DIPG children. Most of their presentation was based on research held in France. I can sorta see where they are coming from, in wanting to do biopsies, in order to get better tissue samples with no Chemo or Radiation in the child's body which would change the tissue sample. The thing that bothers me the most is that by doing so it will NOT help the child in question but be used for future scientific purposes. This procedure may kill the child or cause disabilities. Even though it is not 100% guarantee that the will survive the procedure how can they even want to put a child's life on the line for science. How can this be considered right. When a parent is first told your child has maybe at the most 6-12 months to live, but we would like to preform a biopsies that may KILL them NOW or cause damage that would bring their quality of what is left or their life way down. How can a parent honestly make a very informed decision when hit with a question like that. I am against this mostly because there is no way I would have taken the chance to lose even one day with my daughter who even though the doctor's only gave her a maximum of 6 months gave me 14 of the most incredible months of my life. Looking back I am so thankful and blessed to have had that time. We were also very blessed that she never received Chemo so her quality of life during this time was much better then it could have been. I guess what I am really tiring to say here is that I am sure that it will be just a matter of time before the FDA and courts demand that the parents take the chance and demand that their child have a biopsies done. To me this is so wrong. This is not right and we as parents really need to ban together to make sure this does not happen for scientific purposes. I donated my daughters brain after her death for scientific purposes which to me is when it should be done, don't ask me to take a chance and give up what little time I have with my child that is not fair to either of us especially, her. How can you look her in the eyes and say your going to die anyway so why not let us do a biopsies today which you may not even come out of, just so we may use your tissue sample to save a child 10 years from now. I am sorry and yes I may be selfish here but MY child deserves to have the best possible life she can for as long as she can. NO ONE CAN TELL ME SINCE SHE IS GOING TO DIE ANYWAY WHY NOT TAKE THE CHANCE. MY ANSWER, I WOULD HAVE MISSED OUT ON 14 OF THE MOST INCREDIBLE MONTHS OF MY LIFE. Plus, she would have never be able to start her dream to find a cure WITHOUT killing a child, to stop childhood cancer and brain tumors. I really can't understand how some parent's who have lost a child to DIPG, but never had this done on their child can support the doctor's or FDA for wanting to do this. My question to them would be if you were presented with this question at the time of your child's DX would you have done this? And having the time you had with your child, looking back would you really be welling to take this chance on their life. Or is it that since it doesn't apply to you but someone else you will support it. And suggest that newly DX children and parents should really think about it. I can only hope and pray that this issue never comes to the point where our government steps in and orders a parent to do this or your child would be removed from your custody. THE DOCTOR's & our GOVERNMENT our not GOD no matter how much they think they are. I will stop at nothing to make sure this DOESN'T EVER happen.