Anyone familiar with Pontine Gliomas??

Please add Alyssa Rose's name to your prayer list. She was dx 02-12-05 with a dpg. She has fought a hard battle. Her left side is slowly shutting down. I see you are studying these, does anything help? She is 5yrs old.

I read that you have info on BSG's. My grandaughter is 5 with one. Has had rad and chemo. was dx 02-12-05 everything was real good and now it's growing.Nothing is helping

My thoughts and prayers are with Alyssa Rose.
Please email me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----
Maybe there is something that I can say or do to help. I will not discuss these children on this web site, only in private through email.

My prayers are with you Alyssa!!!!!

I am so sorry not to have responded in so long. my husband and i are bulding a house, and i do not have my computer up and running yet. yes you are correct, my daughter pass away in april of 2005, its been one year and one month.

thank you for that msg. Im crying. you really say it well. love your child love your self love your life. My 4 yr old, was our oldest, passed of dpg july 04. My husband our daughter and our new addition baby boy have molded into a new healthy (as can be) happy family... we call it the new normal. To all families with dpg, love your child through it and honor his/her memory by keeping yourself and your family together. heal yourself

Eileen, I lost my angel on April 6th, 2005, and if you need any info on the reality of this condition please feel free to e-mail. --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----
I will talk about anything you need to know. thanks, robyn calvert

That is the way it should be, discussed through email and not broad casted on this message board
the reality of this condition and what these children endored before there passing away.

Wanting to know how Maria is doing. I have been reading her web site but it has not been up dated in a while. Hope everything is going OK.

I have been keeping up with Maria's story. It is nice to read that she is doing well. I have also noticed that she is going to St. Judes Hospital. There services are free to your family. I hope with all the money that is being raised some will be donated to St. Judes Hospital for the care that Maria is recieveing and also to help with the care that other children are recieving. If it was not for St. Judes Hospital there is no telling where these children would be and Maria. More research needs to be done on these tumors and others cancers that continue to take childrens lives and it takes money. St. Judes runs strictly on donations, So please keep that in mind. Take care, my thoughts and prayers are with you and your family.

Hi Parents,
In reading everyones message, I have to say that I am glad that I am not alone in my grief. On Wednesday 6/7/06, my daughter had her first MRI. We went to All Children's Hospital in St. Petersburg, FL. The best hosptial... I was told after that appointment by the Doctor that my daughter had an non operational tumor and that the Onocolgy Doctor will have recommendations on what our next step will be. I was not inform until a couple hours later what her tumor was. The I was given the shock of a life time, that my daughter (my beautiful little girl) will probably die next year. I can not even begin to feel all the hurt that this is causing. I have a little boy that is 9 months also and feel sadden about him not probably going to remember his sister at all. My husband and I are now discussing everything, down to the last moments she will have. Some please tell me how in this world I am going to say good-bye to her!!!!