Hi ... mother of 14 yo boy with brain tumour (JPA) in Thalamus

[Steph]

Hi, I have just joined this site to try to connect with other parents who are looking after a teenage child with a brain tumour (hopefully even the same sort of story as ours) and to try to seek and give support as we travel this journey together. Harry was diagnosed at the begining of last year and operated on in June. They got 80% but the price for surgery was an aquired brain injury (he is right side affected like a stroke). He was symptom free for 3 months and we thought that we had saved him. Then he developed headaches that required the Pain Team to manage. The next few months he enjoyed over summer but he caught croup and now has gone down hill again. New symptoms are increased pain which we are still trying to manage appropriatly, occasional violent vomiting (usually on waking) and tremours and twitches. We are currently in that "no mans land" where they cant identify what is happening so just monitor but he is not well. He is to sick to go to school and is very housebound. I am hoping someone else out there has some answers or suggestions. Steph

[Melanie]

Steph, I have no advice sorry- my husband has a BT in the same place & whilst I understand some of what you are going through- every day I thank god it wasn't my child. I hope you get some answers for him and I hope he feels better soon. I'm around if you want to chat some more- it can be very lonely dealing with this awful disease Mel