11yr old son to have lower leg amputation

[popey]

Hi My name is Diane and one of my twin sons was diagnosed june 19th as having synovial sarcoma (Cancer) in his left foot, they have tried to get it out but cannot get it all out. He has to have lower leg amputation because the cancer is rare and aggressive. His op is on Sept 5th at Stanmore London, any advice would be gratefully received as naturally he is frightened. Diane

[stonecutter]

Hi popey. Welcome to the forum. I wish it was under happier circumstances, but sadly all of the members here at this forum are here because they have been affected by amputation in some way. I'm very sorry to hear of your son's medical condition.

I myself lost my left leg below the knee due to an industrial accident, but there are several members here who have lost limbs due to cancer. I imagine you'll have plenty of replies to the thread within a day.

My quick response to you is that it's not going to be easy but it will get better as time passes and your son heals. He will quickly learn to live with his new prosthesis and learn to do most things that he has done in the past.

Again, welcome to this forum.

Trevor

[popey]

Thank-you Trevor, I am very glad i joined this site
Di

[barclay]

Hi - Popey, be positive with him. Losing a lower leg is not great, but it's not the end of the world either. He will be able to live a fulfilling life, an option he doesn't have keeping the leg. Start looking into resources, support groups, technicians, the ins and outs of the health insurance - the more information you have now, the less terrifying it will be.
As Trevor said, many people are able to continue with their past activities, even sports, maybe not at Oscar Pistorious' level :-), but well enough to complete with other hobby players. I play tennis for example and do scottish country dancing.
As best you can, take it in stride and he will follow.
Wishing both of you the best!
Cynthia

[cherylm]

Hi, Popey...Absolutely keep a positive attitude with your son! A below-knee amputation is not a "terrible" thing...it's more a matter of adjusting to slightly different ways of doing things than anything else. If he feels your confidence in him, he'll be confident in himself, and that's more than half of the battle.

One more thing--and this may sound strange to you--but if he must undergo an amputation, it's a good thing that it's happening while he's young. He still has a brain that's flexible and open and able to pick up new tings quickly...and he still has all that youthful energy that we grown-ups watch and marvel at! His adjustment will be much, much easier than if he'd had the surgery after he was "grown and set in his ways."

Do try to do your very best to keep him in prosthetic legs that fit well (which, I'm afraid, can be a challenge with a youngster), and never discourage him from trying to do anything that a "normal" boy of his age might want to do. He IS a normal boy...his "normal" is just slightly adjusted from that of other boys. Barring any other health problems (the cancer is probably more troubling than the loss of a lower leg), I can just about guarantee you that he'll back back up and around and being active as ever before you know it.

Any questions you have, please post them here...there will be someone who will know the answer. And DO keep us posted on his condition and progress!

[ann-]

Hi Diane
Am sorry to hear about your son and his forthcoming op. I have been reading the responses here and think they are all giving you good replies.

I myself lost both my legs below the knee when I was about a year older than your son, mine was an accident and difficult though things were to begin with, I very quickly got back to a very normal life and looking back now over forty years later, (and as a mum myself), at my teenage years I remember them as being very happy, I was really very active and don't remember missing out on much that my friends, at that time, were doing. At the time, apparently, someone told my parents that if there was a 'good' time that something like this had to happen, this was the time, and as the years have gone by I have realized that they were right, I notice, and you will probably notice with your son too, that children who more or less grow up as amputees have a very different take on the situation to that of many adults who lose limbs later in life, they usually adapt very quickly and often come to think of the prosthesis, almost as part of them, to me mine are my legs and though I have some memories of my real feet, nowadays I don't really give having or not having them too much thought.

As others have said keep the positive attitude going, positivity is what I remember most from when my accident happened, even though, as I now understand, things were for a while uncertain, everyone was very positive to me about the future and the things I would be able to do whilst focussing on things day by day, for it very much was one day at a time, one step at a time, but I did get there and have done pretty much most of what people told me I would, and probably more too .. I've had a few ups and downs along the way, but for the most life is pretty normal.

I imagine at the moment your little lad is just really scared about everything, especially the operation, remembering how I felt at that time I was mostly frightened, I actually got more frightened of treatments and procedures the longer I stayed in hospital, so am guessing your little boy might have already gone through difficult treatments for his condition, so might very well have similar feelings.

From my own experiences, be very prepared for him to take out his frustrations on you and probably ask you some quite difficult questions, there will probably be some very good days and some frustrating days. I remember quite clearly asking my mum what they had done with my legs, and why god let this happen to me, I don't remember now actually what she told me, but I do remember the way she answered all my questions as best she could.

Your son may have different worries as a child to those that adults might have, one of my big worries was how they were going to fit the prostheses on to my legs, I had some vague memory of peter pan and captain hook and thought they were going to literally screw them into me and they were going to hurt me. Prosthetics are much more out there and in the news these days, so might not be an issue, but might be worth trying to talk to him about things like this.

Maybe if you get the chance before the op, or shortly afterwards, see if he can be shown the type of prosthesis he is likely to get, or perhaps meet another child who is a year or so down the line with his prosthetics. Or maybe talk to him about Oscar Pistorious, or watch other amputees who may be competing in the paralympics, it might help him to realize whats possible ... but he may not want this though, at this stage but maybe you gather the information and talk to him about it or show him when he is ready.

I do wish you and your little lad the very best and I hope his surgery goes well. I know Stanmore is a well respected orthopaedic hospital, so I am sure they will be geared up to treating children and give him good care, even so, don't be afraid to ask them questions, perhaps write down the questions you all have and take in a list, its something I've done in the past.

As others have said, if you have any questions post them up .... if I can help I will reply. Let us know how he goes on as I am sure we will all be thinking of him.

[snowyh]

Hi, popey. I commend you for seeking out the amputee community for advice in addition to talking to doctors, therapists, prosthetists, etc. I lost my arm at age 15 due to bone cancer (osteogenic sarcoma). Couple of points:

• Kids take their emotional cues from adults. If you are calm and positive about going through this rough patch, it will help your son to cope.
  
  
• Kids adapt to change faster & more completely than do adults. They aren't so attached to what their futures will be, so it's easier for them to accept the twists & turns of life.
  
  
• Don't appear to be hiding anything from him--no whispers with the doctors, etc. He needs to feel that there will be no more surprises that he doesn't know about yet.
  

That's my 2 cents.

Helen

[popey]

Thank-you Helen so much, I really am grateful that you have taken the time to reply. I try every so often to talk about it, but at the moment he is not ready. you have bought up some very valid points. I have learnt to be honest and frank with him, it isnt any good sugar coating what you say as it comes back and bites you. once again thank-you

Will keep you updated
Di xx

[popey]

Hi Ann
Thank-you so much for your reply, i am so happy to read a positive story. This has spurned me on. We go on holiday on friday to France, then back to stanmore for his op on 5th September, will use the 2 weeks holiday all of us together to hopefully put him in a positive frame of mind. At least we will get the cancer out of him, and luck willing it doesnt come back.
Thanks again
Will keep you posted
Di

[popey]

Hi Cheryl

You are so right the cancer is more troubling, the amputation is a by product of a nasty disease. Hopefully with all the help and tips you lovley people have given me the easier it will be . thankyou for your very positive post.
will keep you updated
thank-you
Di

[popey]

thankyou Barclay, for all of your positive comments, will keep you and everyone posted
regards
Di