Looking for Luck

[buzz for boys]

Me again having a little mini breakdown!!

Tommorow we are going to a new hospital with Cameron who believe they can get him an artficial eye in. This is soooooooo amazing for us but Im so worried it will end in disaster and all the positive things we have done to build cams self esteem will be smashed if it doesnt work out.

I started out with a little man who wouldnt leave the house and after a lot of hard work and perservarance we have finally got him to accept him for who he is. Then a new hospital comes along and says we can fix how he looks but no guarantees. I have to give it a go as he will very soon be starting secondary school and I would never live with myself if we didnt at least try!! But on the other hand if he is happy at the moment should we rock the boat ??

We were told last week that Cam has 2 new growths but they then discussed yet another pioneering treatment and operation plan. It just all feels like we are climbing a mountain that just keeps get bigger !!! I know I should be grateful that they retracted "We cant do anything else !!" and I am but I just dont feel right about the appointment tommorow and it so needs to go well so I dont risk having a very unhappy little man on my hands again.

I guess what I really want to know is am I doing the right thing taking him tommorow to try to get an artificial eye in or should I Just cancel it and not rock the boat ??

 

[scottish mum]

no advice hun, just go with your gut instinct. Will be thinking of you all tomorrow

 

[Dimplenose]

What is the timescale for the new treatment? - it would be a shame to go through the stress of getting the eye fitted only for a new treatment to mean he can't wear it for a while. Perhaps the treatment should be sorted first.

I have to give it a go as he will very soon be starting secondary school and I would never live with myself if we didnt at least try!!

But if you really feel like this then you should give it a go now

 

[buzz for boys]

What is the timescale for the new treatment? - it would be a shame to go through the stress of getting the eye fitted only for a new treatment to mean he can't wear it for a while. Perhaps the treatment should be sorted first.



But if you really feel like this then you should give it a go now

He will start the new treatment in the next couple of months we are building him up at the moment so he can cope with it. He will start with having steriod injections and then they will do an operation which is in 3 stages. The first removes any growths and surrounding tissues, 2nd they will take a graft of tissue from insde his mouth and put it in a pocket they make in his head attach a blood supply and leave it to grow and establish a healty blood supply for 2-4 weeks. 3rd bit they take the new healthy tissue through his skull into his socket leaving a blood supply from his head. The theory is because the tissue is from his mouth and the blood supply from his head then new growths cant form as non of it is actually relying on his eye!
Problem being it is only theory !!!

So by this time next year we should know if its worked or not but first we need to get cam at a point where he is fit enough and strong enough for more surgery - hence the temporary fix of a new hospital helping to make his appearance easier for him!!

 

[joolz1910]

Oh Louise, this is such a difficult decision to make. Would it be possible for Cam to have the treatment and after that discuss the cosmetic side at a later date? I can sympathise over the secondary school issue but in my experience it isn't always kids with an obvious 'problem' who get bullied. My gut reaction would be to keep him confident and happy with who he is for the time being. I'm guessing that's how you feel too. It has to be your decision - I'm sure that whatever you decide will be right.

 

[Pinky166]

Not really any words of wisdom, as I can't begin to imagine what you have been/still going through but wanted to give you some & . x

 

[mandymouse]

Lots of love and luck as you make this difficult decision Louise

 

[jjk]

go with your instincts Louise, thinking of you x

 

[Tinks1984]

Good Luck Louise, whatever decision you've arrived at for today

 

[katiec]

What a horrible position to be in and I wish you all the very best.

Has Callum said what he wants to do? Maybe this will make your decision easier?

Best wishes

Katie

 

[Ware Bears]

and

 

[taylor91]

Good Luck with your decision. I hope all goes well with whatever you choose

 

[tennisfan]

Good luck with whatever you decide

 

[T16GEM]

Just wanted to say good luck for today in whatever you decide

 

[Jets fan]

Gosh, only just read this. The upside of this is that he will get treatment and it shows that they are constantly thinking of him. As with anything medical, they are developing new things every day.

Good luck and big hugs to Cam

Tina x

 

[strawberry blonde]

Good luck for today Louise

 

[Goofyish]

 

[buzz for boys]

Thanks all x x x

Well i took Cam as what ifs are always the thing that will keep me awake at night !!

It was an amazing appointment the people we saw have so much experience in facial reconstruction. They did say that nothing has any guarantees but that they will try their best - Ive never asked for anymore than that!!

They spent a lot of time talking to Cameron and explaining everything to him before taking a mould of his eye socket. They managed to get a "waxwork" eye into his socket and it stayed in place for a good 15 minutes so it looks like they may just be able to manage to get something in!!!

We go back in 2 weeks to see what they have managed to make.
For today there is a tiny bit of hope that we can at least improve his appearance to make life easier for us all when we go out and about x x x

Thanks again for all the replies xxxxx

 

[Tinks1984]

It's nice you've got something positive from today Louise and that you managed to take Cameron and feel okay about going in the end.

Let's hope they can sort something for Cameron. Even if they can't though, he comes across as a wonderful little boy and hopefully nothing will ever stop him being out and about. Hugs and pixie dust to you all

PS. Lets keep the 'Jeff Hardy Effect' going for a longgggg time!

 

[katiec]

Glad you had a positive visit today - even if you dont go through in the long run its better than bad news!

Hope the good news continues.

Katie x x x