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Heather Mills - Amputee Forum
joyv11

Alexander in Scotland

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Hi to everyone, my first post.

I am Alexander's mum.

He is 12 in August and last Tuesday he had a below knee amp for ewings sarcoma which is a type of bone cancer.

We are near Glasgow in Scotland. I have info from the Murray Foundation but if anyone can put me in touch with any other sources I would be very grateful.

Wish you all well.

Joyce

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Welcome to the forum Joyce and Alexander, :)

I am afraid i cannot help very much apart from advising you to keep scouring the internet for sources of info, there is quite a lot out there.

There will be plenty of people here who will be able to help you more and i am sure they will be along to post soon, keep checking because with the different time zones members post at what seem odd times to us.

I hope Alexander is well after his op. One good thing about being young is that resiliance is high.

Keep us posted on his progress and post any questions and queries you have yourself, even if it is just to let off steam when either of you are stressed.

Please let Alexander post here as well once he is up to it, there are other children who look in that may be able to give him tips and advice and share their experiances. It is a great outlet.

Once again welcome to you both. :)

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Welcome to this forum,

I'm sorry about the bad news about Alexander, but he's still alive at least. The good news is the amputation won't stop him from having a full life. I lost me leg when I was 3 due to a birth defect and I'm still able to run, hike, ski, sail boats. I have not found anything in life that I can't do because of my leg.

Talk to my parents if you need suport from a parent who's child has ost a leg Thier screen name is ampskiers mom an dad.

TTYL

Eric

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Hi Joyce and Alexander,

WELCOME to the site - its a great place to find information, advice and above all SUPPORT.

I'm 35 and have a right below knee amputation - last November 5th. I've been up and about since December and can do almost everything I want to. I can even go body boarding in the surf!! I have to be able to - I've got 2 sons aged 7 and 9.

Alexander will be fine - it's amazing how resilient children are - and it sounds like he's got a great Mum too.

I hope that you find all the information and support from this site that you need and GOOD LUCK.

Sue - Cardiff - UK :rolleyes:

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HALLO JOYCE

I HOPE ALEXANDER IS COPING WELL AFTER HIS AMPUTATION.

I LOST MY LEFT LEG (ABOVE KNEE) AS A RESULT OF A ROAD ACCIDENT WHEN I WAS ONLY 5.

I HAVE BEEN ABLE TO WORK FULL TIME, DRIVE, GET MARRIED AND BRING UP 3 CHILDREN ETC. ETC.

I ATTEND WESTMARC LIMB FITTING CENTRE AT SOUTHERN GENERAL HOSPITAL IN GLASGOW WHERE PROBABLY ALEXANDER WILL BE A TREATED AS WELL.

I HAVE ALWAYS BEEN TREATED WELL WITH KINDNESS AND CONSIDERATION.

YOU MIGHT ALSO LIKE TO CONTACT THE LIMBLESS ASSOCIATION, ANOTHER SUPPORT GROUP FOR AMPUTEES.

BEST WISHES

MAUREEN

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Hello Maureen,

Nice to see you on the forum, coming to the aid of a local person. Great timing.

Thanks as always,

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Hi Joyce,

Sorry to read about your sons amputation.

My son (9 years old ) Josh will be having an amputation in June.

Maybe Alexander and Josh could become email buddies ? They would have something in common to chat about .

Debbie

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Hi Joyce,

I wanted to welcome you to our forum family and say we are glad you found us. This is a great place for support, venting, asking questions and caring people. I've been an amputee for almost 37 years and (born missing my right foot)and can tell you that Alexander will have a great life. Let him be a kid and do everything that he so desires well within reason.

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Hello again

Thank you for your welcoming replies, the board has a nice feel to it, I have used other forums as I myself was treated for cancer 2 years ago and I used support forums then too. They were pretty mixed tho' some good and some not so good.

Debbie, once Alexander (or Zander as he likes to be called) has got his head round this I will try to get him to post some messages.

Maureen, we have had a visit to Westmarc and that IS where we will be going so you never know we may get to meet some time. I will try the Limbless Assoc as you suggest. Having some bother with DLA as we applied for it in February and they sent a letter yesterday saying they still haven't reached a decision on DLA aaaarrrrggghhhh what evidence do they need to pay out this as they have had written stuff from oncologist and ortho surgeon. Don't even seem to be able to get a disabled badge for the car as you have to be in receipt of higher level DLA to qualify for that too, the wheels of the benefits system sure move slow and I am a novice to all this as we have never claimed for anything in our lives.

Thanks to everyone elso for replying, it is nice to know you are not letting this hold you back. Alexander was/is a very active wee boy and was into snowboarding judo and football before all this happenned.

I may be a tad paranoid but I have noticed that some of his friends have stopped calling, I don't know if it is because they know he is in hozzie a lot and they don't know when to call or whether their mums are discouraging them... maybe just paranoia on my part.

Sorry for the long message, see you all soon

Joyce

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Hi Joyce and welcome to the forum, where people are very friendly and enjoy helping others all they can. Sorry I'm not familiar with resourses from other countries, but I'm sure someone will come along with good info for you.

I hope Zander is doing well. He sould like a very active young man and that's good. Today there isn't anything he can't do, once he set his mind to it, so try and stay positive and he'll be just fine. It's a day by day process, to get where he wants to be again and with a lot of Love, determination and practice he'll get there, I'm sure. :)

Someitmes people/kids will shy away until they realize that there is nothing to fear. With the help of you and Zander sort of explaining a little at a time to them, perhaps will make the situation a bit more comfortable when they come over. It'll be okay, just remember the three P's- Positive, Patience and Practice!! :D Good Luck and please keep us updated on his progress.

Sheila LBK

Maine USA

Keep Smiling :)

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Hi Joyce & Zander,

I totally agree with Sheila. You have to encourage the friends to keep in touch & visit. They're probably unsure & a bit scared right now to. Put their minds at ease & assure them that Zander is still Zander. Nothing about him has changedexcept for the leg. If they're around from the beginning it'll make it that much easier for them to understand & be there for him. It'll help him through rehab. He's got a lot on his mind & he's only almost 12. I have a son who'll be 12 in July. It's a transitional age.

So, it's up to you, Mom, get those friends over, let Zander know that they want to stop by, & involve their parents as well. Sometimes the adults can be worse than the kids! ;)

My best to both of you,

Linda

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Hi Joyce,

Have just read your posting. I live in Cheshire and am waiting for a date for my amputation.

I applied for DLA on 5th November last year and was turned down. I phoned them up and was told it was not successful because my doctor had written on the report - mobility GOOD, he was a new doctor and I had only seen him once, but he must have been blind, I was on crutches and he saw me take three steps into his surgery. Anyway I wrote to my consultant and he said he couldn't understand their decision as my condition was unlikely to change. To cut a long story short, I was awarded the DLA last week. The reason I got the higher rate was that I needed help to prepare a meal i.e. carry pans, food, etc., this may make a difference to Zander as he is a child. The Blue Badge I was awarded last October, but I have been after one for about five years. The moral of my story is DON'T GIVE UP!!!

I am sure his friends will come round, I suppose they don't know what to say to him at the moment, keep us posted how he is getting on.

Keep smiling :)

Love Pam

Cheshire, UK

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Hi Joyce and Alexander - I lost my leg in 1995 due to Synovial cell sarcoma - so I don't know about Ewings,sorry. However this is a great site so it should help you - welcome by the way - when alexander is up to I'm sure he'll get lots of information by reading all the different posts. Your question about people calling is difficult because of their ages - it may help Alexander to call his friends and bring the subject up as a lot of people just don't know if you're ready to talk about all that has happened. It would brreak the ice and maybe help his friends to get comfotable. I know what he is going through and it may be awhile before he's ready. Please say a big hello to him from Canada and to keep smiling :) Thinking of you all Wendy

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Thanks again for more replies.

Well, we bit the bullet and phoned round three of his friends and they are coming today. We will be going to pizza hut at lunchtime so I hope it all goes well and his friends see that he is still the same boy. Luckily it is a wet day here so it will be inside play such as the ps2 etc and it won't be as if they want to go out and play football.

Wendy I am so glad that you have recovered so well from your type of sarcoma, this gives me hope.

Liliquoi, I will check out that sports site. Thanks for that one.

Pam, I will keep chasing the DLA. Where I work my patients are getting every benefit going for mental illness and relatives get travelling expenses to visit them and everything. I am glad I am not at the desperate stage yet but all the travelling up and down to hosptals and the extras soon mount up.

Sheila and Linda, thanks for your insight and support. It is not an easy time and although my workmates and friends often ask how things are I don't like to burden them too much with all thats happening.

Lots of Love

Joyce :)

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Hi Joyce ans Zander! :) I was just wondering how your day went at pizza hut? I really hope things went well for you! Wendy

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Hi Joyce,

How are things going ?

Has Zander had a fitting for his prosthetic yet ?

When the time is right I have found a great contact in Canada.He is the same age as Zander,a below knee amp and he is really into sports. Just email me a private message if you want contact details.

Debbie

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Hi Wendy and Debbie

Thanks for your messages.

Well Zander's friends came over and they had an o.k time. I could see that one wee boy (his bestest friend) was a tad uncomfortable at first but they were soon all having fun. The only thing was that because he does not have a prothesis yet they were limited to what they could do.

He has also had a couple of days at school and the very young kids (5, 6) were so blunt...WHAT HAPPENED TO YOUR LEG!!!!. Zander just said he had an accident and they were happy with that.

Anyhow, I will contact you Debbie and give you our email address as I am sure Zander really needs someone his own age to talk to right now. Too many adults mulling around him just now. I sowed him this site a few days ago and he had a laugh at some of the funny bits but also checked in at the phantom pain bit as that is a wee problem at times.

Love and hugs

Joyce :D

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You said that Zander is into snowboarding. I'm a skier but I know that amputees can snowboard. Here's a picure of ME skiing down a very steep hill called Ganet Chief. It doesn't look steep in the picture but it is

post-12-1086788224.jpg

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Hi Joyce,

Its great to read that Zander is back to school the kids will get more comfortable with the situation with time.

Josh is to have his amp just before our next school holidays. He will have 3 weeks off before he goes back to school.

Hey Eric ...... have you ever been snowboarding ?

Debbie

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Hi to everybody

I hope you are all well.

We have been offline for a while as the hard drive went, its still not fixed so I am on an old computer we have. Lost all my sites, can't get into my emails so sorry for not replying to folk (esp Debbie) I have not forgotten, just dont have the facility at the mo.

Zander went to Westmarc last Monday but it was a waste of time as he still has a cast on. He had the tibia capped with his big toe bone and they put a cast on to protect it till it heals. This is supposed to stop the tibia growing any more.

He has also restarted his chemo so will be getting that for another 6 month.

We got the DLA and have also got a blue badge which makes getting about a lot easier.

Again, hope you are all well.

Love

Joyce :D

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Hi Zander & Joyce!

Glad to hear from you :) Good luck with the chemo treatments Zander - you'll do just great - just remember to keep smiling ;) .

We'll be thinking about you and remebering you in our prayers.

All the best! Keep Smiling! Wendy

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Hi Joyce and Alexander

I am sorry I think I might be writing this late

but welcome and I am so sorry to hear about alexander

Im lesley,17 and a RBKA for a year now

Welcome and these bunch of people are so sweet and you will defintely get answers to your questions here

Lesley

RBKA

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Hi Znader and Joyce, its nice to hear from you.

Keep you chin up Zander, i know chemo`s not nice but you will get through it and the time will fly by.

Sorry to hear about your pc troubles, its one of those, you don`t miss it till its not there things , isn`t it.

Good luck, i`ll be thinking of you.

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Hi Joyce,

Glad to hear you have got your blue badge, it does make life a lot easier. Are you going to apply for motability now you have got your DLA? I went out and ordered a car, only to be told I couldn't have one because I had only been awarded DLA for one year, do they think I am going to grow a new leg!!!!!! I have applied for an extension now, don't know how long that will take.

I hope Zander is getting over his operation and his friends are still calling to visit.

Hope you get your PC up and running soon, I know I'd be lost without mine.

Keep in touch.

Love Pam

Cheshire, England

XXX

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Hi Alexander and Joyce,

I'm a bit late too, but wanted to welcome you both to the forum. :D

I'm so glad you joined us, this forum has continued to grow and improve! Between us, we have many years of experience of being an amputee, and can continue to advise, motivate and inspire one another.

All the best, especially to Zander.

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