King Kevin Posted February 5, 2018 Share Posted February 5, 2018 Mate just logged on ,opened the thread with trepidation but hoping for good news about Joel .Thoughts are with you ,never ever give up [I know you won't] Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 5, 2018 Author Share Posted February 5, 2018 44 minutes ago, rynny said: Sorry to hear John, hopefully someone can help. As always if you want to pm me you can. Thanks mate,it’s be going wrong for a few weeks tbh,I’ve just had my eye on Mr Irving coming back in March,hoping things wouldn’t develop till then. Try and stay positive and see what we can do,I’ll let you know what they say this morning. Cheers Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 5, 2018 Author Share Posted February 5, 2018 49 minutes ago, McRamFan said: Wish I could help. Knowing you’re with us helps mate... honestly. Link to comment Share on other sites More sharing options...
angieram Posted February 5, 2018 Share Posted February 5, 2018 I can't really add to what others have said, just hang on in there and love each other. Link to comment Share on other sites More sharing options...
BarrowRam Posted February 5, 2018 Share Posted February 5, 2018 Just read your post John. I really hope something can be done for Joel. Everyone on the forum is with you and your family. Link to comment Share on other sites More sharing options...
Mafiabob Posted February 5, 2018 Share Posted February 5, 2018 Wish I could help much much more mate. Always here for a chat Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 5, 2018 Author Share Posted February 5, 2018 We’re stuck till Irving returns,Joel’s appointment in March is the best we can do,he does go in at least once a week but practically they can do nothing. The plan is to just build him up physically and mentally,nothing negative everything is going to great even if it’s a bag of ?. I’ll let you know in a couple of weeks when we’ve had a look at his MRI. Last night was a low but we’ve moved on from that now. Thanks for the messages and support. Link to comment Share on other sites More sharing options...
RoyMac5 Posted February 5, 2018 Share Posted February 5, 2018 1 hour ago, coneheadjohn said: Last night was a low but we’ve moved on from that now. Thanks for the messages and support. So relieved to hear you say that. While there's life there's hope. Hope you can convince Joel he needs to see the Rams in the Prem? (Don't mention last time! ) Fingers crossed that he finds the thing to keep him positive, I guess no-one can be positive all the time in the face of such hardship. Take care, all the best. Link to comment Share on other sites More sharing options...
Pearl Ram Posted February 5, 2018 Share Posted February 5, 2018 Not trying to be sickening but somebody sent me this when I was at my lowest ebb, it inspired me so much I had the quote tattooed. Hope it brings you some positivity. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 5, 2018 Author Share Posted February 5, 2018 10 minutes ago, RoyMac5 said: So relieved to hear you say that. While there's life there's hope. Hope you can convince Joel he needs to see the Rams in the Prem? (Don't mention last time! ) Fingers crossed that he finds the thing to keep him positive, I guess no-one can be positive all the time in the face of such hardship. Take care, all the best. Thanks mate. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 5, 2018 Author Share Posted February 5, 2018 8 minutes ago, Pearl Ram said: Not trying to be sickening but somebody sent me this when I was at my lowest ebb, it inspired me so much I had the quote tattooed. Hope it brings you some positivity. Cheers...I like that. After Joel’s last op a guy approached him in the hospital and gave him this card,now I’m not religious at all but I thought perhaps there’s some truth in it. It’s stuck on the fridge now. Link to comment Share on other sites More sharing options...
Pearl Ram Posted February 5, 2018 Share Posted February 5, 2018 I love that, I’m not religious by any means but I’m all for anything that can strike a chord and help someone roll up their sleeves as it were, on one of their better days. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 5, 2018 Author Share Posted February 5, 2018 11 minutes ago, Pearl Ram said: I love that, I’m not religious by any means but I’m all for anything that can strike a chord and help someone roll up their sleeves as it were, on one of their better days. I felt sorry for the guy because Joel was sat all mashed up in a wheelchair and anyone who approached him ran a risk of death(more from Mrs Cone). Once we were home and I found it I wished I could thank the guy. What a kind inspirational thing to do. Link to comment Share on other sites More sharing options...
Pearl Ram Posted February 5, 2018 Share Posted February 5, 2018 5 minutes ago, coneheadjohn said: I felt sorry for the guy because Joel was sat all mashed up in a wheelchair and anyone who approached him ran a risk of death(more from Mrs Cone). Once we were home and I found it I wished I could thank the guy. What a kind inspirational thing to do. There’s some good people out there, if the media didn’t scour the planet to tell us about the bad ‘uns I’m convinced we’d be happier for it. I was staying with my sister, in a bad way, and she must have told a friend how worried she was about me and he sent the picture I posted for her to give me, I didn’t know him from Adam, I had a bit of a lightbulb moment a) from him taking the time to find it for someone he hadn’t even met and b) the words kind of kicked my arse, not that I’m suggesting any of the Cones need that, I mean one day it may just provide you with a little lift on one of the not so good days. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 5, 2018 Author Share Posted February 5, 2018 14 minutes ago, Pearl Ram said: There’s some good people out there, if the media didn’t scour the planet to tell us about the bad ‘uns I’m convinced we’d be happier for it. I was staying with my sister, in a bad way, and she must have told a friend how worried she was about me and he sent the picture I posted for her to give me, I didn’t know him from Adam, I had a bit of a lightbulb moment a) from him taking the time to find it for someone he hadn’t even met and b) the words kind of kicked my arse, not that I’m suggesting any of the Cones need that, I mean one day it may just provide you with a little lift on one of the not so good days. It was amazing how many people came up to Joel and shook has hand or asked him if he was ok. Young guy who had lost an arm in a motorcycle crash came to him asking him if he was ok?? There’s a lot of kindness and good people,it’s a shame there’s ? as well. Link to comment Share on other sites More sharing options...
Chester40 Posted February 5, 2018 Share Posted February 5, 2018 Seeing your children struggle and not be able to do anything is every parent's fear. Not fair.... Your courage and humanity is staggering. I keep hoping you get a miracle. Best wishes as always. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 6, 2018 Author Share Posted February 6, 2018 9 hours ago, Chester40 said: Seeing your children struggle and not be able to do anything is every parent's fear. Not fair.... Your courage and humanity is staggering. I keep hoping you get a miracle. Best wishes as always. Thanks as always mate,not expecting an easy few months and I reckon we should be ready for something unexpected. Cheers. Link to comment Share on other sites More sharing options...
RamNut Posted February 6, 2018 Share Posted February 6, 2018 I had never heard of this condition before. It sounds nasty and difficult to treat. I assume that the cause is a persistent virus? And that surgery has failed to remove all of the affected tissue and so the infection keeps coming back? Is that it? Everyone has to feel tremendous sympathy for joel who has gone through hell. unfortunately we can't do anything to help, other than to hope that the professionals find a cure, and to wish the whole family the very best. puts footy into perspective. Link to comment Share on other sites More sharing options...
Coneheadjohn Posted February 6, 2018 Author Share Posted February 6, 2018 17 minutes ago, RamNut said: I had never heard of this condition before. It sounds nasty and difficult to treat. I assume that the cause is a persistent virus? And that surgery has failed to remove all of the affected tissue and so the infection keeps coming back? Is that it? Everyone has to feel tremendous sympathy for joel who has gone through hell. unfortunately we can't do anything to help, other than to hope that the professionals find a cure, and to wish the whole family the very best. puts footy into perspective. We’d never heard of it either and your assessment is pretty accurate. Cholesteatoma is disease that has to be removed surgically,usually removed without too many problems. Consultants liken-it to an onion that adds layers as it moves eating bone,perfectly treatable with surgery to remove but this has failed in Joel’s case despite multiple surgeries and his last op(you can see the pic)was an adaptation of a brain cancer procedure. They can’t say exactly why the surgery has failed but as I have said previously on diagnosis the cholesteatoma was massive and the damage extensive. When they remove it it they have to drill around it and take extra bone to ensure the don’t leave any extra cells behind. The situation now is that his last surgery they have removed as much of his temporal bone,inner ear bones to the point where there is nothing left hence the consultants decision not to offer any more surgery. After this we’re as confused as anyone,Mr Irving says he might consider putting a larger graft from Joel’s thigh in to the base of his skull,his no .2 says that’s not possible as does Professor Ray in Sheffield,who also says Joel has had an abscess in there that we knew nothing about? We just need to know specifically what’s going on,what can we do about it and when. That hasn’t changed since he was 11/12 years old tbh. All the treatment is horrible and painful. Football has become vital for Joel purely because you have to cling on to the things you love so although for years he’s been having surgery in the early months of the year that has buggered it up,he’s loving it even though he’s not been able to go much. This year is different,just got to hold it together for a few weeks to sort him out...hopefully. Cheers Link to comment Share on other sites More sharing options...
Shipley Ram Posted February 6, 2018 Share Posted February 6, 2018 I've recently come across this thread and was so moved I almost wish I hadn't. I would love to be able to offer you and your family more than my best wishes but I can't. Good luck, stay strong, and I hope the Rams provide good distraction for you all. I've had an terrible 2018, I've spent more time in hospital than out, but Joel's story makes me feel fortuanate. Link to comment Share on other sites More sharing options...
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