I always seem to ask for prayers, support and advice from this group, so just for once I would like to share a journey that has light shining through it.
My son over the past eight months has had a spinal tumour removed, eight weeks later had a tumour in the cerebellum removed, three weeks later started a six week course of radiotherapy to treat another spinal tumour, eight weeks after the completion of radiotherapy - taking us to the 24th March this year - he had the spinal tumour that was treated with radiotherapy removed. All of these surgical procedures were necessary, as the situation had suddenly become very urgent very rapidly.
Eight months ago, my son was walking - badly - but was walking, he was loosing feeling in his left leg, his right leg was starting to feel 'wrong' and his balance was pretty poor. Prior to his last piece of surgery he was unable stand.
A week ago I watched my 21 year old son take his first steps......again! Today he stood to make himself a hot drink. Friday last, he walked 100 - 200 yards, with a walking frame, and plenty of sit downs. It took him 45 mins - but to use his own words "I walked!" The physios who are working with him, hope that he will be walking with the frame around the ward in the next four weeks, or maybe even with crutches! Next he is to try walking up some stairs!
I just wanted all of you who have followed my sons story, who have included him in their prayers, have offered hope, support and advice to us as a family to know that your prayers have been answered, your postive thoughts heard!
THANK YOU!
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Just wanted to share some good news!
- By Myway
- Posted April 23, 2009 at 3:43 pm · 6 replies
- In Finding emotional support
- Shared with the public
6 replies
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- By raekel
- Posted April 24, 2009 at 10:31 am
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what a wonderful achievement. thank you for sharing your story. best wishes, raeanne
- By Beverly2
- Posted April 24, 2009 at 5:46 pm
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I'm so happy for you!
Thrilled actually!
Tell your sweet boy that we pray for him often and think of him always!
- By love2learndream
- Posted April 25, 2009 at 10:52 am
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Hi! I just wanted to say congrats! Every bit of positive helps us all take baby steps. Just one step at a time and keep up the excellent work, no matter if there are hard days or not.
I am new to this site, not even diagnosed with VHL (yet), and am anxiously waiting for my first genetics appointment. I will share my story soon and in hopes that I can inspire you, just as you have now done for us/me. Thank you for sharing :)
Also, as a parent...congrats on your hard work and how sweet it is to see your baby walk again. I am so happy for and with you! Give your baby lots of hugs from all of us and keep that positive energy flowing.
Loves & hugs to all,
love2learndream or Brenda :)
- By dani
- Posted April 25, 2009 at 11:35 am
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I'm the same age as your son, and I became a quadriplegic at the age of 18 after surgeons removed a tumor the size of a man's thumb.
It takes a lot of hard work, but with help and encouragement, I'm sure he'll go much farther. My hero is a former physical therapist i had in rehab. She went from sitting in a wheelchair barely able to move and now she goes hiking and white-water rafting. :)
- By Myway
- Posted April 26, 2009 at 10:13 am
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Thank you for your words - I shall pass them all on to my son!
Brenda, I shall be thinking of you as you wait for your genetics appointment, and it's outcome, just know that this site is here, and all who visit it have something to give - it is special.
Dani, thank you for sharing your inspiration/hero. Sometimes, I do believe, we need to know that no matter how dark something appears to us if we look hard enough there is light.
Raekel and Beverly2 - thank you!
- By pupa
- Posted April 26, 2009 at 9:09 pm
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Dear My way
I too have that the road with my son traveling all over the world to have surgeries preformed, and I must say we have always been blessed with support from strangers who have become partners in the pain we share. they have comforted my son and I feel lucky .. I pray for all but my heart goes out to all the vhl sufferers
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