Nf2 and Lew

Update posted by Jo74 On Oct 19, 2013

Next appointment is on Thursday at Manchester children's hospital in the oncology and haematology unit. Lewis is meeting another new team of specialists. Discussions will be taking place as we think this is relating to the avastin treatment.

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Update posted by Jo74 On Oct 19, 2013

Lewis was seen in Aintree Hospital last week and needs surgery to remove a stitch which is protruding out of his forehead. We are going to try and wait for the time being until we know what is happening with the sciatic nerve tumour

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Update posted by Jo74 On Jun 08, 2013

After attending an appointment with Lewis last Wednesday we came away with more bad news. Lewis has a sciatic nerve tumour that has grown and it has sacral nerves 1 and 2 embedded in it. There were various consultants at the appointment and all agreed that this tumour is inoperable and also would not withstand conventional radiotherapy that this country offers. The only course of treatment that they could offer is a drug called avastin, administered intravenously every fortnight for up to 3 years. However the consultants have no idea whether it would even work for him. If not treated this tumour will cause paralysis of his right leg and loss of bowel and bladder movement. We have contacted proton therapy institute in Jacksonville and they have treated these types of tumours with good results, but not with an Nf2 patient. 

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Update posted by Jo74 On Jun 08, 2013

Recent results from lewis's MRI scan have shown that the Proton treatment has had an effect on the tumour that was treated, there has been a slight shrinkage in size and we are all excited about the news. Thankyou UFPTI for everything.

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impossible is nothing!

Guest

Backed On Oct 19, 2013 Amount Hidden

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I really hope u raise a lot so you can have the op. I have nf2 and was moved by reading your story...all the best xx

Kelly

Backed with £5.00 On Sep 16, 2013

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I'm wishing you all the luck in the world x

Ben

Backed with £15.00 On Sep 16, 2013

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I wish you all the very best, keep strong lots of love. X

Amanda & Savannah

Backed with £20.00 On Sep 16, 2013

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Guest

Backed with £65.00 On Sep 10, 2013

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Sarah

Backed with £20.00 On Aug 15, 2013

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Karen Keene

Backed with £10.00 On Aug 03, 2013

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I have a grandson who has NF2 so I know something of what you are going through. I pray God helps you to get your target.

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Backed On Jul 17, 2013 Amount Hidden

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Backed On Jul 17, 2013 Amount Hidden

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Paul Bruder

Backed with £200.00 On Jul 16, 2013

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