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My 6 year old was DX with a Pilomyxoid Astrocytoma...

Tracie1981's picture
Tracie1981
Posts: 125
Joined: Mar 2010

Hi, My Name is Tracie and I have a 6 year old little girl that was recently diagnosed with a pilomyxoid astrocytoma. They are saying its spread to her spine and she is now doing chemo and will have another surgery after her first cycle. I know that medical advances to this point are amazing, does anyone have any experience with this type of tumor? Everything I read on it is bad. Thank you and God Bless. Tracie

gophergenius
Posts: 33
Joined: Apr 2012

Tracie, I'm very sorry to hear about your daughter, she is so young. I am hoping the outcome will be very good. I had a pilocytic astrocytoma located in the temporal lobe, but did not spread anywhere. I did not have to have chemo or radiation. A few weird things about mine...this type of brain tumor is found in children, I had a grand mal seizure at 45 and they found the tumor. They are slow growing, but I had it all these years, it probably stop growing and started up again later in life. I did end up with two surgeries because it was wrapped around part of the amygdala, hippocampus and something else(cannot remember!) Then about 2-3 years later I was diagnosed with advanced colon cancer and am in remission now. I know one thing, I have enough "red flags" that I was contacted regarding a genetic test. I hope you do not think I am being pushy, but I had an excellent neurosurgeon that does great work, I suffered very little from the surgeries, if you'd like, I would be happy to give you his name. I am sure he would do everything to save your child and above all reduce any possible suffering. From what I understand, a pilomyxoid astrocytoma is a variant of an pilocytic astrocytoma, How long ago was she diagnosed? How far/how much has spread to her spine? I will be thinking of her and praying for a great outcome. Let me know if you just need to talk.

Tracie1981's picture
Tracie1981
Posts: 125
Joined: Mar 2010

Thank you for your prayers, we just found out on May 30th and its been a rollercoaster since then. Im trying to understand more about the tumor. Im not sure how much has spread, im still waiting to see the scan for the spine. I have the disc I just cant upload it on my computer. The one in her brain is the size of a golf ball, they have already done one surgery to do the shunt and biopsy it. We are as of now, going to UNC for the neurosurgeon, they have done good so far. I know while we were there, there was a few other children dealing with astrocytomas, not sure what kind. Im still not sure whats going to happen, the not knowing part is the worst. Thank you and God Bless, Tracie.

gophergenius
Posts: 33
Joined: Apr 2012

My neurosurgeon was at Hermann Hospital in Houston, Texas. If you feel confident in your surgeon stick with him. I do understand the rollercoaster ride, to bad it truly isn't a wonderful ride at the fair. I had swelling after my second surgery, after I was out of ICU and went home...that was the most painful. I'm sure you know if she is in pain, so, as I'm sure you,ve been told, get her to the hospital if swelling starts. What part of the brain is the tumor located? Please let me know how things are going and any support you need, I'm here to listen.

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Tracie,

I posted about your daughter on the Lymphoma board. Lots of prayers for your daughter and all of you from your friends on the lymphoma board. Stop in if you find a free moment.

Lisha

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Tracie,

I remember you from the Lymphoma board. I saw this post from you and wanted to be sure to say that I am thinking of you and your sweet family.
This is so much for you and your family to be going through. You must be so scared. Try to stay strong, even though it is very hard to do.

You are correct, medical advances have come a long way, especially when it comes to young children.
You have lived through the cancer and chemo experience, so you know it is doable and hard at the same time. But children seem to handle so much more than adults do. They have such strength and grace in difficult situations. I was a Peds nurse many years ago, and I have seen the strength that children have. Truly amazing.

I hope that you are doing fine. I know that you have had some on going health issues too. Remember to take care of yourself. It's so easy to forget your own needs when your child is ill.

Please keep us posted when you have a moment. We are here for you, always.

Prayers and positive thoughts for your daughter and all of you.
I will keep you close in my heart and prayers.

Lisha

gophergenius
Posts: 33
Joined: Apr 2012

Hi, I'm just checking in on you and your daughter to see how you are doing. If you choose to share, let me know how things are going.

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

My daughter is 14 and was diagnosed with AA3 at age 12. You are not alone. If you ever want to talk, I am here, we all are. This is really an amazing site. I think it has kept most of us sane. You and your daughter are in my prayers

katiekatjacob
Posts: 8
Joined: Apr 2012

Hi Tracie, praying for your daughter. I'm in my own battle myself and have found HealthTap to be a good site to find information from real doctors when you are feeling scared or unsure about something.

hHealthTap is for asking health related (going back to work questions) of doctors and specialists. The company has been getting a lot of press lately and has been helping me through my own cancer battle.

I guess HealthTap is coming out with a huge new product today, has anyone tried it yet? I just read this article: [URL="http://blogs.reuters.com/small-business/2012/06/28/tech-tonic-checks-in-with-healthtap/"]http://blogs.reuters.com/small-business/2012/06/28/tech-tonic-checks-in-with-healthtap/[/URL]

Hope you can find answers for your daughter. I wish I had some.

xoxo Katie

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