| 156 | | 
Name: | Debbie
(debbie.cruxton@btinternet.com)
| | Date: | Thu 19 Nov 2009 21:53:43 GMT | | Subject: | transplant | | | Maddy is now 4 years on haemo-dialysis and 2 years on call for a transplant. Still cancer free 6 1/2 years from diagnosis. Hopefully not much longer for that transplant but we are not holding our breath as transplant rates are way down. | | | | | |
| 155 | |
Name: | Ken West
(ken.west@bt.com)
| | Date: | Sun 06 Sep 2009 01:24:27 BST | | Subject: | Hi ...and New Website!! | | | I would like to second what Fiona has said about your new website, which I have just seen.
Great job Monica and Andy!!
I hope all 3 of you are doing fine at the moment (In 'Childhood Cancer Awareness' month).
http://www.zazzle.co.uk/childhood+cancer+awareness+gifts
Very Best wishes,
Ken
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| 154 | |
Name: | Monica
(monica@wilmsathome.org.uk)
| | Date: | Tue 07 Jul 2009 18:47:11 BST | | Subject: | New Website | | | thanks Fiona for the nice comment about the new website. Please everyone start to use the forum (sign in only). We hope to add a chat facility to the forum soon also.
Many well wishes
Monica
Wilms at Home
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| 153 | |
Name: | Fiona
(s_f_adams@hotmail.com)
| | Date: | Mon 06 Jul 2009 13:08:39 BST | | Subject: | new look website | | | The website looks great. Well done Monica and Andy | | | | | |
| 152 | |
Name: | Lisa Dhami
(lisa_dhami@hotmail.com)
| | Date: | Tue 16 Jun 2009 21:54:41 BST | | Subject: | Anyone had similar experience? | | | Our 4 year old has been diagnosed with stage 4 wilms - it is in his lungs and at the bottom of his heart. The first cycle of Chemo has failed the tumour has grown and spread to his liver. They are now giving us more intensive Chemo but we have been informed that if this does not work that there is not anything else they can do but make him comfortable. Has anyone else had a similar experience? It is a terrifying time for us and a long 5 week wait. | | | | | |
| 151 | |
Name: | Olga Lyu
(cleosnake@yandex.ru)
| | Date: | Wed 18 Feb 2009 17:32:59 GMT | | Subject: | Consultation | | | Hello! I'm an intern pathologist in Russia. Not quite far in the clinic where I study there was a case of Wilms tumor in 65-year-old woman. Immunohistochemistry reveals high expression of Ki67. But there were some opinions about this tumor: Wilms tumor or mesoblastic nephroma. If it is possible, could you consult this case? And what are conditions? Thank you! | | | | | |
| 150 | |
Name: | Martens Veronique
(paul.deer@telenet.be)
| | Date: | Mon 29 Dec 2008 21:18:53 GMT | | Subject: | Sick newborn | | | I live in Belgium and on the 12th of January 2008, my 8 week old baby girl was diagnosed with stage I Wilms tumor. She had a nefrectomy and 10 weeks of chemotherapy (Vincristine).
She is now 14,5 months old and is doing very well! | | | | | |
| 149 | |
Name: | Lorraine Galloway
(GALLOWAY_L@sky.com)
| | Date: | Sat 16 Feb 2008 17:37:31 GMT | | Subject: | 10 years post treatment | | | My son Scott was diagnosed with bi-lateral Wilms Tumours at 8 months old. In a fews days (19th Feb.) he will be 10 years post op.( left kidney and partial right kidney removed) and treatment. He will also be celebrating his 11th birthday on next Saturday - something I wasn't sure we would get too, but here we are 10 years on . Love to all, take care of yourselves and families. Lorraine xxxx | | | | | |
| 148 | |
Name: | Debbie Cruxton
(debbie.cruxton@btinternet.com)
| | Date: | Tue 29 Jan 2008 15:51:03 GMT | | Subject: | The 2 years are up! | | | Maddy had her 2 year scan 10 days ago and we have finally had the results. ALL CLEAR. This means she can now go on the transplant list. we are so relieved as no one thought it would happen. My mobile now will always be with me and fully charged. Trying to relax about it though as the wait is probably going to be a lengthy one. | | | | | |
| 147 | |
Name: | helen blay
(helenblay@ntlworld.com)
| | Date: | Mon 05 Nov 2007 20:46:11 GMT | | Subject: | wilms | | | Thought it was about time for an update on Charlie. After much waiting and many phonecalls, Charlie was admitted to Kings College Liver unit on wednesday of last week for endoscopy. They found that he has developed several large varices in this throat and stomach that needed banding and injecting. They also performed a liver biopsy. Because of the severity of the veins the endoscopy will have to be repeated in 4 weeks and 8 weeks, possibly more depending on how Charlie reacts. We spent 2 nights on the noisiest ward I have ever experienced, and as a family we all feel shattered. We've had lots of tears from the children, Charlie 9 and William 6 and I feel like I've got flu- although I know from experience it's just exhaustion from keeping going and holding it all together. We have been blessed with 5 years off treatment and relatively non-invasive hospital appointments, this has come as a shock. The Doctors have put Charlie on beta blockers to help lower the blood pressure in his liver and medication to stop acid production in his stomach, in an attempt to stop the varices from bleeding. Charlie is making a slow and steady recovery and can't wait to eat normal food, having only been able to eat slop for the last few days. Will post more when we know more, love to all, Helen xx | | | | | |
| 146 | |
Name: | Debbie
(debbie.cruxton@btinternet.com)
| | Date: | Mon 15 Oct 2007 23:46:56 BST | | Subject: | transplant | | | Maddys latest scan has shown she is still all clear. we have been meeting the transplant team at the Evelina at St Thomas's in London and if the ct scan in January 2008 is clear she will go immediately on call for a kidney. It will be two years this week since we were given the news she had relapsed for the second time and she may only have weeks to live. Thankfully with guidance from the North American co ordinators she was given a lifeline and the nephrologists agreed to dialysis her even though she was given little chance of survival. However my beautiful brave daughter has beaten the odds and will hopefully be the first in the UK to go on to have a successful transplant after 2 relapses and loosing both kidneys. | | | | | |
| 145 | |
Name: | Mandy Kelly
(Mandytaylor80@btinternet.com)
| | Date: | Fri 14 Sep 2007 19:35:06 BST | | Subject: | Eve - 4 years Stage IV (Kidney %26 Lungs) Wilms | | | Just want to update you on how Eve is doing. We are now 2 months on after finishing treatment and having her Hickman lines out. Eve is doing fantastically well and a very happy, lively 4 year old who has just started full time school, ballet lessons & Irish dancing - phew..... and also back swimming :)
She had her first check up after finishing treatment which all went well but we are now waiting for scan and CT appointments to come through which will be nerve wracking! We are so grateful to get back to some sort of normality enjoying a holiday and another one planned for October but the checkups are a worrying time which we will have to deal with. I wish everyone the best for whatever stage they are at through this frightening time. Mandy, Richard & Eve | | | | | |
| 144 | |
Name: | Monica
(monica@wilmsathome.org.uk)
| | Date: | Fri 07 Sep 2007 17:52:09 BST | | Subject: | Endoscopie- Looking for help! | | | Can anyone help with information on endoscopies to band varices? A family whose child has experienced damage to the liver due to chemo side effects and now needs to undergo an endoscopy is looking for information on this for their son.
Can anyone help?
Many well wishes
Monica
x | | | | | |
| 143 | |
Name: | amanda mcurray
(amanda040675@yahoo.co.uk)
| | Date: | Wed 05 Sep 2007 14:41:38 BST | | Subject: | wilms | | | Was wondering if any one has had any hearing problems after there kids came of chemo. Sian has to go for a hearing test on friday as she cant seem to hear out of her right ear. Would be grateful if any one who has had the same thing happen to there kids. bye for now x | | | | | |
| 142 | |
Name: | Monica
(monica@wilmsathome.org.uk)
| | Date: | Tue 04 Sep 2007 17:52:46 BST | | Subject: | After treatment | | |
We wanted to let you all know that our Ewan is now over 3 1/2 years post-treatment and everything fine. Ewan had scans yesterday and everything clear. That feels great after so much fear and worry when Ewan was diagnosed in 2003 with Wilms stage 4 (also affecting the lungs). We are still worried leading up to check-ups but we are also hopeful that Ewan will be able to live a healthy life.
Many well wishes to all of you
Monica
x
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