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Anaplastic Astrocytoma

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

I have been looking alot of places on the web and here on CSN to find other children or parents of children with AA3. I have talked to a few, but I find it hard to believe that there are so few. One of the oncologist from our last hosp told us that there was only a hand full of documented AA3 pedi pts in the country. He said it was an adult cancer. If you are a pt or caregiver of a AA3 pt plz, lets talk. I need to know that we are not alone.

dldboo
Posts: 1
Joined: May 2011

Hi, My name is Dawn and I just found your post by accident. Where exactly is the tumor? I have knowledge of the Anaplastic Astrocytoma III but on the brain stem...please advise before I proceed any further.

God Bless you

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

My daughters tumor was in her cerrebellum. Her last MRI was clear, thank God. She has had 3 surgeries. the first initial surgery and then 2 others to remove new tumor growth. It is not in the same place as what you have knowledge in but, I would still like to talk with you. Thanks

goodboy
Posts: 2
Joined: Jun 2011

I just read your post- my son just finished treatment for AA 3, and i have also only spoke to 1 other person (pediatric) who has had AA 3- would love to connect to you- how old was your daughter? How long is she 'cancer' free? thanks

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

I'm sorry that you are going through this awful journey too. My daughter was 12yr old when 1st diagnosed. She is now 13. It has been 15 months since diagnosis. How is your son doing? I have so many questions for you. Where is your sons tumor?, were they able to remove it? what treatment did he just finish? what facility does your son go to? We live in NH so we go to Boston, Mass. We go to Dana Farber/Jimmy Fund. They are so awesome there. They give us so much hope. I really hope to talk to you again.

megansmom
Posts: 8
Joined: Nov 2009

I recently lost my daugther after a 18 month fight with anaplastic astrocytoma, we had clear MRIs and then suddenly not clear. She was only 16 yrs old! The cancer came back in three places one of which was in the Dura, so they could do nothing to cure her. I am so thankful for the time that we had after the surgery with her feeling good and enjoying life. I miss her so much, and wish so badly my baby did not have to feel so awful the last 3 months of her beautiful life. I know your journey and hope for you that you continue to have treatment options. I have monitored your posts and it was good to see the recent ones. I will continue to monitor your posts and pray for you. I know how hard the process is and how difficult each step is. I also know the worst outcome and pray you have a much better future then we got. Our baby was able to leave us messages notes to tell us how much she loved us and notes for her sisters to receive in the future. It is not the same as her being here but it does help a little. Our children should not have to go through this and we should never have to lose them before us. I watched her come in and go out of this world and held her close to me everyday between,it was just not long enough.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

You brought tears to my eyes, I am so deeply sorry for your loss. I pray everyday that God will take care of my girl and he will, whether it is here or in heaven. I have heard many stories like yours and I fear that this will be how our journey goes as well. I have been trying very hard to concentrate on today and not think to far ahead but, thats what parents do. it has been 15 months since diagnosis and so far so good, but this cancer is sneaky. My question for you is how do you handle everyday now? I'm not sure if I can handle her passing away and I just don't know how people go on after losing a child?

megansmom
Posts: 8
Joined: Nov 2009

We have two other daugthers and Megan left us with instructions to make their life as great as hers, everyday is hard! We spend a lot of time just being a family, you do second guess every decision you make. I will never hold her babies and she wanted babies so bad and never got that. She was a wonderful student and wanted to graduate from High school and did not get that. She had a lot of wonderful friends, and seeing them still helps some. I know she was a gift but I that kind of gift should not be taken back. SHe was able to let everyone know how much life and what you do each day is everything. As a Mom I believed we would fight and I wanted her to believe that fight would get her a future. She when to school and we tried to make everyday as normal as possible, I hope that was the right thing. I keep telling her that if your given tomorrow live it. Honestly I want to cry all the time, but I can't my girls need me and Megan wanted them to able to go on and have a wonderful life. We do cry and I do think of what I and they don't get in the future becuase we don't have her. She left us all notes and I read that and remember why I am still here. My youngest daugther is 7 and her words are so helpful. She believes that for us time is long and slow and we miss her so much, but for Megan time is not the same that when she sees us again it is like no time has passed. I pray that my dad, brother and all the grandparents hold her for me everyday. We have letters that she wrote for her sister for important days like when they turn 16, graduate for High School, and get married so it is like she is there a little bit. She also picked out earrings for us to give them on their wedding day. She was an awesome girl, and my friend I miss her so much, and it only gets worse everyday. My only comfort is that she is able to dance and sing and have fun again no more being sick. The last months were not good she did not get to walk anymore, she could not use her left arm, and she really just had had enough. She however stayed alert and able to communicate with us until one day prior to her death. I don't know why this happened to us, I am a good mom just like you, and my children and Husband are good people. You do need to hope and believe it will be OK otherwise you are just waiting until the end, and that does not one any good. LOve her and suck in every minute, and I will pray that she has a long life full of love and memories. Megan's favorite song was If I die young, it speaks right to me, it is like she is talking to me. I would love to keep in touch with you, I will watch for further posts, and listen to Madison's Mom there is hope!
Stacy

jules_korte
Posts: 3
Joined: Jul 2011

Our daughter was diagnosed the end of April with an Anaplastic Astrocytoma 3 it is in the pons of her brain stem and is affecting her right optic nerve and the left side of her body. She has endured 33 treatments of radiation with chemo. She is currently in a case study but we are looking for something else. Any advice would be welcomed as we search for a treatment that doesn't involve her being on chemo for almost a year strait.

jules_korte
Posts: 3
Joined: Jul 2011

Our daughter was diagnosed the end of April with an Anaplastic Astrocytoma 3 it is in the pons of her brain stem and is affecting her right optic nerve and the left side of her body. She has endured 33 treatments of radiation with chemo. She is currently in a case study but we are looking for something else. Any advice would be welcomed as we search for a treatment that doesn't involve her being on chemo for almost a year strait.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

unfortunetly treatments do last for awhile. My 13 yr old has been on treatment for 16 months. She is getting tired of chemo and taking a million pills, but for now she is cancer free. She went through 4 brain surgeries and 35 radiation treatments. She has IV Avastin every other week and takes 2 oral chemos everyday along with several other meds. No it is not fun for her or I but, if it keeps her cancer free. She goes for her next MRI August 3, we will then decide whether or not to continue treatments or at least a break.
Good luck and I will pray for your daughter

madisons mom
Posts: 2
Joined: Jun 2011

hi,
I joined cancer survivors to send you a note. I still have a hard time with the whole cancer thing. My daughter, Madison, was dx with a grade 2 astrocytoma 5 years ago this past June 14th. She had what they thought was a 100% tumor resection. In Nov of 2006 the tumor was back and larger then before. She had her 2 tumor resection followed with 33 treatments of radation (tomotherapy) and 11 months of chemo (temodar). Pathology on the 2nd tumor came back as a grade 3 anaplastic astrocytoma. We were told she would not survive a year. They were so wrong. Today, she is a beautiful, healthy 6 year old. I just wanted you to know that there is hope. If there is anything I can do for you, or you just want to talk send me an email. amanda_austin(at)msn.com.
you guys will be in my thoughts

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

I am so happy to hear your story. Some days are harder than others as you know. Your daughter is doing good? I was told by our Dr that we have youth on our side. That the cells in the brain can recover faster than an adults. My daughter has definetley beaten the odds so far. She had 4 brain surgeries and before each one they told us that she would come out of surgery looking like she had had a stroke. She has come out of each surgery just fine. The only side effect is some left sided weakness, but it is only noticeable when the doctor does his coordination tests. She does have some unsteadiness issues because of where her tumor was (cerrebellum) and of course from all the radiation treatments. That is something we can both live with. Where did your daughter recieve her care? Luckily we had a great surgeon on her last surgery. The surgery was supposed to last about 4 hours and it took almost 8 hours. The surgeon took her time and really tried to get it all. The surgeon felt very confident that she had got it all. My daughter is on a 5 drug regimen now consisting, of 3 different chemos. 2 are oral and 1 is IV and a cocktail of other various meds that together should stop tumor growth. The doctors said that she has passed a big milestone as they usually see regrowth by now. It is a big milestone for the cancer center too, for the same reason. I am very thankful for this site because I have been able to connect with moms going through this with their kids. I met a woman by some strange chance that lives within 30 minutes from me who's son has AA3 and I thought that it would be a good thing for our kids to meet and for us to meet and have someone to talk to about all of our fears. Unfortunetly, it didn't work that way. I did meet with her and she is in total denial about the cancer. She thinks of it as a broken leg and that it will heal and be all better soon. I guess what bothered me the most is that she never told her son about my daughter. She never gave him the chance to talk with someone going through what he is going through. I guess we all have our own ways of dealing with things. I would love to talk with you more, thanks.

madisons mom
Posts: 2
Joined: Jun 2011

i agree some days are harder then others (still). I worry about every cough (chest CT 6 months ago - i was informed that brain cancer spreads to the lungs), colds (tons of blood labs), tumble (current issue - madison fell about a week ago and has been super pale ever since - looks like we will be heading back to PCH to have her checked out, again)... She was treated at Phoenix Childrens Hospital and St Joe's in Phoenix, AZ. We had some good doctors and some not so good (very negative). We were also told youth was on our side. We were also told that she would come out of her surgeries with lots of bad side effects, after her 2nd sugery we were told that she would be paralized from her neck down, tumor site is her spinal cord (C1 to T2). 3 days after her first surgery we were back home and she did great, no side effects. 4 days after her 2 surgery we were home, we had a little scare in the hospital because she wasn't using her arms and hands. but that only lasted a few hours and she stared recovering. Today she had (very) minor weakness in her hands, and some tingling in her left thumb, other then that she is doing great.
I haven't met any other families going thru what we had. My family (even my husband) is very similar to the lady you described. All i ever heard was "she is going to be fine", and "what are you worrying about". It drove me crazy. I really just needed someone that would listen to my fears and not judge me for having negative feelings. I made it through ok. I still have my beautiful daughter.
During Madison's last MRI review and neurosurgeon check up, he said that he didn't feel that the tumor would ever come back, but that we would still keep a close eye on her. That was when we were allowed to move her MRI's out from every 6 months to every 9 months.
I wish nothing but the best for you and your daughter. I am so glad she is passing the milestones, and hope she continues to do so.

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