too much information

its all quiet on the Fletcher front. we are waiting for a few appointments but have none booked at the moment. Fletcher is still doing well, his hair has nearly grown back around his scar and his balance still seems to be ok. Shannon is good aswell, she seems a bit happier at school which is a relief.

ive spent the last couple of months searching on the internet for other families going through the same thing. i thought that it would be good to try and help people and spread the word about proton therapy. i also thought it would be nice for people to have someone to talk to who has been through it and be able to answer questions about treatments ect... i know how it feels to have so many questions and not always know where to get the answers from.

i was also interested in finding people who have beaten ependymomas. however im going to stay away from the internet for a while. i find that i cant sleep again and when i do i keep having really awful nightmares about Fletcher, some about being back in hospital, others about phone calls from doctors bringing bad news. ive woken myself up crying a few times, the dreams feel so real. while ive been looking for people who may need my help ive got to know a few other childrens stories and in a lot of cases i cant help feeling that we are lucky but this makes me feel that maybe there is more to come, that we have got off lightly (compared to others), that maybe we wont be so lucky in the future. i know i have to stay positive but the thoughts are there and they wont go away. ive seen families where the children have lost their battle, some were even clear for years before it came back and that scares me so much.  so ive got all these awful thoughts going round in my head. im scared to say any of it out loud so i haven't even told Noel how im feeling. i hate feeling scared all the time but i just cant seem to switch off. i cant be bothered to see friends any more really as there's so much in my head and i feel like i have to pretend to be happy all the time.

ive been restless since we got back from america and i have been thinking about moving but when i really thought about it i realised that i cant run away from this and it will be with me wherever i go. im just going to have to find away to live with this constant worry without driving myself insane.

on a more positive note my brother and his fiance have been over for a week and its really helped having family around. i just hope that the volcanic ash doesn't interfere with the rest of my family coming over in a couple of weeks for Fletcher's birthday. i miss my family and need some time with them.

Comments

[Johnny]

Keep your chin up sis, you have done great and I am sure that the worst of it is now over. The little guy in a way seems better than the rest of us put together! With all that he has been through, the bravery and innocence of youth seems to have carried him through brilliantly. He is not old enough to really understand all that has happened, and as a consequence does not carry the burden of fear, dread and worry that us grown ups have to. I'm looking forward to seeing you all.

Take care, and remember, enjoy everyday, plan for a bright future and wait for the genius to become a millionairess and look after us all!

Lots of love

John

[Jeff Hardy]

Hang in there. It IS an emotional rollercoaster. Try not to get too high or too low, I was once told. Hug him everyday and be happy for every day God gives you with him. Ryan was dx 7 years ago with his tumor and 1.3 yeras ago with leukemia. It has been a tough journey. Keep positive and just be amazed at what a wonderful little boy you have. As I told Noel, email or call me if you have qustions. A lot of what you are going through, so too did we. God Bless.

Jeff Hardy