It is now 365 days since William received his stem cells and his new immune system. He continues to amaze and delight us. We have all come so far in the last year and it means so much to have had you share our WAS journey.
This will be our last entry on this blog. I pray we will never have cause to start another but we have found it quite therapeutic chatting to our computers and sharing our experiences with you all.
If you ever wonder how we are and think of looking at the blog, give us a call or send an e mail instead.
If you have stumbled across our blog and find yourself in need of someone to chat to about bone marrow transplant or Wiskott-Aldrich Syndrome then do send us an e mail.
with love
Catherine, Robert and William xx
Sunday 28 September 2008
Sunday 21 September 2008
We walked (and cycled) to the beach....
Wow! Together we have raised over £10,000. Jeans for Genes and The Sick Children's Trust both want to pass on their thanks to you all for your efforts and to your generous supporters. You are an amazing bunch!
Lots of pics at www.justawalktothebeach.org
Lots of pics at www.justawalktothebeach.org
Friday 5 September 2008
News
As they say, no news is good news and William has continued to do remarkably well. We are not back up to GOS until February and the one year BMT anniversary is looming but before that it's Just a walk to the beach.
Just in case, dear readers you don't know to what I refer, this is our fundraising event for Jeans for Genes and The Sick Children's Trust. Many of our amazing families and friends (or as I think of them extended family) are travelling over 2,200 miles and getting sponsored to walk and pedal their way, carrying a surfcraft to Saunton Sands in North Devon for the big finish on Sunday 14th September. How mad are they? We are thrilled by their involvement and bowled over by their support. So thank you all, for everything and good luck and safe travels to you all. For more details see www.justawalktothebeach.org
We will post piccies here and on the Just a walk website so keep your eyes peeled.....
Just in case, dear readers you don't know to what I refer, this is our fundraising event for Jeans for Genes and The Sick Children's Trust. Many of our amazing families and friends (or as I think of them extended family) are travelling over 2,200 miles and getting sponsored to walk and pedal their way, carrying a surfcraft to Saunton Sands in North Devon for the big finish on Sunday 14th September. How mad are they? We are thrilled by their involvement and bowled over by their support. So thank you all, for everything and good luck and safe travels to you all. For more details see www.justawalktothebeach.org
We will post piccies here and on the Just a walk website so keep your eyes peeled.....
Monday 30 June 2008
Update
Happy 65th Birthday Dad and Happy Birthday Nick!
We are all doing great! William is well. Recently he had a high temperature which resolved without antibiotics, that immune system is really doing it's stuff. We also thought that he might have been getting chicken pox after a close encounter but we gave him a precautionary extra dose of immunoglobulins and he didn't, phew! Mum has had her last dose of chemo (fingers crossed) and is recovering from that, she has been amazing through it all. We are just trying to do 'normal' things and make the most of everything. We went camping the other weekend in, yes you've guessed it north Devon and even managed to fit in another 'Just a walk' press interview!
Thanks for checking in on us.
Love to you all.
We are all doing great! William is well. Recently he had a high temperature which resolved without antibiotics, that immune system is really doing it's stuff. We also thought that he might have been getting chicken pox after a close encounter but we gave him a precautionary extra dose of immunoglobulins and he didn't, phew! Mum has had her last dose of chemo (fingers crossed) and is recovering from that, she has been amazing through it all. We are just trying to do 'normal' things and make the most of everything. We went camping the other weekend in, yes you've guessed it north Devon and even managed to fit in another 'Just a walk' press interview!
Thanks for checking in on us.
Love to you all.
Tuesday 3 June 2008
3rd June
This brave and inspiring man has only just come to my attention, where have I been? This is a very honest and massively moving account by Adrian Sudbury about his battle with leukemias and through bone marrow transplant. He is using the time that he has left to raise awareness about bone marrow transplant http://baldyblog.freshblogs.co.uk/
Sunday 1 June 2008
Just a launch on the beach
We had a fantastic day on the beach at the launch party. To see some pictures go here....www.justawalktothebeach.org/pages/morepages/gallery.htm
We had a digital camera treasure hunt, won by Andy and co (some very impressive sprinting to the carpark to get the camper van shot clinched the deal). Special mentions must also go to Ben and Sophia for moving the least and getting all the shots, zooming in on a camper van on the road was certainly a clever move, Nick and Bryony also showed exceptional dedication when they went to the beach shop and asked if they had a turtle that they could photograph (and after some rummaging in the store room found that they did!)
The sandcastle competition was certainly sandy. An impressive number of castles were built, beautiful flags displayed and a mermaid crafted. However the winners were Nick and Bryony with their inspired coffee and cake castle.
Thanks to Grandma Sue and Granma Ruth for their exemplary judging.
The leaky bucket relay was hilarious. The sea was so far away that we dug a well to race to but water supplies were limited so buckets of sand made their was back rather than water. After some questionable but highly effective tactics by Nicki the girls team were victorious.
Nicki made our delicious 'just a walk cake' with caster sugar sand, soon mixed with real sand but was much enjoyed by everyone.
Can we have a big cheer... 'HOORAH' for Tasha and Jim who cycled for 8 hours and covered about 50 miles over Exmoor to be with us on their Tandem. Sadly they didn't make it in time to get to the beach party but their achievement was amazing. To their enormous credit they also cycled back (another 5+ hours) to the station battling gale force winds, rain and thundering traffic on the Monday as many campers fled a stormy Devon.
We had a great weekend, barbeques, a pub lunch, noisy student neighbours, lots of flapping canvas, soggy stuff, catching some waves and a lot of splashing about, fabulous cooked breakfasts (cheers Ben!), walks on the beach and a few beers and most importantly amazing company. Thank you all for coming and supporting us and being the fabulous people that you all are!
We had a digital camera treasure hunt, won by Andy and co (some very impressive sprinting to the carpark to get the camper van shot clinched the deal). Special mentions must also go to Ben and Sophia for moving the least and getting all the shots, zooming in on a camper van on the road was certainly a clever move, Nick and Bryony also showed exceptional dedication when they went to the beach shop and asked if they had a turtle that they could photograph (and after some rummaging in the store room found that they did!)
The sandcastle competition was certainly sandy. An impressive number of castles were built, beautiful flags displayed and a mermaid crafted. However the winners were Nick and Bryony with their inspired coffee and cake castle.
Thanks to Grandma Sue and Granma Ruth for their exemplary judging.
The leaky bucket relay was hilarious. The sea was so far away that we dug a well to race to but water supplies were limited so buckets of sand made their was back rather than water. After some questionable but highly effective tactics by Nicki the girls team were victorious.
Nicki made our delicious 'just a walk cake' with caster sugar sand, soon mixed with real sand but was much enjoyed by everyone.
Can we have a big cheer... 'HOORAH' for Tasha and Jim who cycled for 8 hours and covered about 50 miles over Exmoor to be with us on their Tandem. Sadly they didn't make it in time to get to the beach party but their achievement was amazing. To their enormous credit they also cycled back (another 5+ hours) to the station battling gale force winds, rain and thundering traffic on the Monday as many campers fled a stormy Devon.
We had a great weekend, barbeques, a pub lunch, noisy student neighbours, lots of flapping canvas, soggy stuff, catching some waves and a lot of splashing about, fabulous cooked breakfasts (cheers Ben!), walks on the beach and a few beers and most importantly amazing company. Thank you all for coming and supporting us and being the fabulous people that you all are!
Monday 12 May 2008
Monday 12th May
It’s been a while, but as they say no news is good news. William is progressing really well. We went up to GOS last week and can now visit Granma and Poppa (and their exotic birds) and go to shops and toddler groups! We have stopped all his meds (not counting the penicillin which he gets forever!) now (probably including the sub cut immunos just waiting on the latest results) so now his new immune system really gets put to the test so fingers crossed. Back to GOS in 3 months all being well. We have updated our car and now have a big blue surf bus ((as Rob likes to call it) in reality it’s an 7 seater Fiat) lots of space for camping equipment and dog! We have been enjoying the sunshine and being a family and working hard on Just a walk to the Beach. We’re getting excited about the Big Launch Picnic, the weekend after next and have an impressive hand crafted 3 metre high flag! Will post again after the launch picnic……
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