Hi all,
My 11 year old was diagnosed with hydrocephalus and a tectal plate glioma. After an etv for the hydrocephalus the hospital forgot to look at his mri to check the flow after the op.
Originally we were told the glioma would likely be benign but they can't biopsy as it's in the brain stem. Regular mris are needed to monitor. Not ideal but okay. On first discovery of this is may this year the paediatric oncology head advised an mri with contrast. Since then he has had mris then 2 surgery's for the hydrocephalus and then 1 more mri. The latest mri they forgot to look at. I rang up to chase it, I left it because thankfully he is well in himself but now I have chased it, we have had a new barage of appointments. So had paediatrician this week ( bk to 1st doc to say he should have mri in the first place). Finally 5 months later an appointment for mri with contrast. And an appointment with neurosurgeons. And an appointment with christies.
It's christies that has got me, as he had an appointment with them in December, but they've now moved it to in 2 weeks time. This obviously freaked me out. But also, online it says christies doesn't deal with children under 16 so I'm confused!
Sorry, hope that makes sense, I'm just a bit thrown. I thought hydrocephalus caused by a benign tectal plate glioma. Not great, but not serious. Do christies see under 16?
TIA 
Hello Sazbo82
I am Brian, one of the Community Champions here on the online Community. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying your post will be "bumped up" to the top of the page and I hope seen and answered by other members of the group.
Living in Oldham I am under The Christie myself and it's my understanding that children with cancer under 16 are under their local NHS Hospital until they reach 16 when their care is transferred to Christies.
In view of the circumstances I think I would be contacting Christies to question the appointment making sure they are aware of your 11 year old's age I hope this helps and you do get the appointment and treatment they need.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Thank you brian. I really appreciate your response. I hope you are doing well! I have found out manchester children's hospital is working with christies and so I get why we have that appointment now.
He's had mri with contrast today so just a wait and see situation now. Still don't know why it's all been brought forward. Just hoping the hypointensity flare is minimal.
Thanks again brian, we are local in rochdale! 
Hello Sazbo82
Thank you very much for replying - it's a hard journey we are all on but the more we support one another then the better off we all are. Sad to say cancer is a bond and it's only those with it or have it who understand.
The information in your post helps me to help others on their own journey so thanks for that.
I wish you well with your results from the MRI and hope for the best for you.
I am under The Christie and although I live in Royton I have my appointments at The Christie at Oldham Royal and in fact I am doing great thank you. (You can read my journey by clicking on my name or avatar).
If you do need any extra support you can always call in the Macmillan Centre in Oldham Royal (just inside the main entrance) and there's always "Maggie's".
Our support line is always there for you on 0808 808 00 00 (8am to 8pm 7 days a week) for extra support.
Do let me know how you get on.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
