myxopapillary ependymoma

Nickyskates77

Hi I am new to this site. My 10 year old son maxopapillary ependymoma has returned after he had a gross resection surgury in his L5 to s1 spinal cord when he was 7.

The doctor  said it has hemoraged thats probably when the pain started they operated and were hopeful they got it all. Now it has returned in the same spot in three small tumors. We recently had an MRI of brain and that was clear except for his archniod cyst that has not bothered him. They wanted to make sure there was no other surprises.

 Now the radio oncologist suggest a treatment plan of proton radiation therapy. We are very hesitate because he is so young. He loves to play ice hockey and play with his friends. We are looking for any information on where to go next and what to do . I am his father and my wife can probably explain this better.

We have saved his cord blood and are wondering if his stem cells can be of used in fighting this tumor or shutting it down . We are open to any experience you may have had with dealing with this rare childrens disease. We are pretty knowlegable about the Proton therapy. We wanted to try other alternantives since he doesnt have symtoms yet but frightening it has come back so quicly. Our doctors arent even sure that radiation can help in killing the cells or controlling the tumor. We are frightened of the long term effects of radiation therapy. But are also scared of waiting for his symtoms to arise of extreme pain in his back which was how we first found it. Thank You to anybody who reads this and can help. I am sorry for anybody going through any difficulties with there own lives or family members.

We had a recent brain MRI and thankfully was stable .

My son is my life and I love him and we just want the best quality of life for him .

We have thought of Boston Mass General, St Judes , CHOP,.