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BenLenBo's picture
Posts: 145
Joined: Feb 2012

This was sent to me by a friend-

For all of us who have a wonderful son that you love
with all your heart! :o)

I'll always need my son no matter what age I am.
My son has made me laugh...made me proud...made
me cry...hugged me tight...seen me fall...cheered
me up...kept me going strong...and driven me crazy at
times! But, my son is a promise from God that I will
have a friend forever!

Our son Benjamin starts his next to last Temodar treatment
in a few days. So far, he is doing amazing, MRI's are still
clear and he looks great, for which we are most thankful. It is
hard to view this site and not cry for the pain and suffering
so many with brain tumors are going through. God Bless!

Posts: 1
Joined: Jun 2012

I am new to this site. My son is a 21 year survivor of myxopapillary ependymoma. Damien was diagnosed at age 5 and I was told he would not make it past 10. He is now 26, still in treatment. He has gone through all the radiation treatments and many, many chemo treatments. He has tumors in his brain, back and behind his heart/lungs. Most are dormant and will never go away but one is being stubborn. Damien is getting ready to start a new chemo, RAD001. He is experiencing incontinence due to pressure from the back tumor on his nerve. I'm hoping this will correct itself with the new chemo. I live 700 miles away and it is so difficult at times to listen how frustrated he is and how he would like to have a normal life. It has been just him and I for a long time. The poem above is spot on. My son is a gift from God and I truly believe he is here for a purpose. Now only to convince him. That is the challenge. We are all so truly blessed and should be eternally grateful we have each other.

If there is anyone who has suffered incontinence due to tumor pressure and has any suggestions I would love to hear. My heart and prayers go out to everyone!

Posts: 5
Joined: Sep 2012

My son also has myxopapillary ependymoma.  He is 7 years old. I recently started a group for parents, grandparents and patient advocates to share treatment information and ideas for children who have myxopapillary ependymoma.  Please join us here:  https://www.facebook.com/groups/myxopapillary/



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