They say there are two Worlds?>> The Living, and the dead////
They also say there is a bridge between them both..
Called Love.....
To Thurlogh and his wonderful family, no more pain, rest and keep me a good seat!!!
If I get up there????
Rhys is well,,, however my thoughts are for a young Irish lad named Turghel (apologies for spelling), he had his transplant a few months back, and recently had problems. He then seemed to beat it and was taken out of ICU.. We recieved a phone call today telling us that yesterday sadly he passed away... Every week I used to bang on his window and continiously ask if there was anything I could do for them or him?? A proud family, tomorrow I go to his funeral before he flys back to his home land...
I always feel that could have been Rhys, we are so lucky, and my heart goes out to his family, in the darkest moments of the transplant you prepare yourself for the worst , but I think nothing can prepare you for that, we live on hope, and thank our lucky stars for each day.
It is not the done thing to call us with such news and for that I thank the person who did,,, they knew I would be in on Friday for our weekly visit, and they knew I would be looking for the brave young man.... We continue to live for the day, and again I am sure all our thoughts are for Turghel and his wonderful Famliy especially his brave Mum Sinead, who was a tireless positive Mum who loves her beautiful baby boy. I will miss you all..
Bye all the best for all our NEMO children around the world and they're brave families
I wish I was a better blogger, however I do know a man that is--------Baldysblog--------- Adrian is devoting the rest of his short life to getting people onto the Bone Marrow Register.... We are going to help in whatever little way we can!! He is a shining example of unselfishness!! Lets get the whole of Wales behind Him and show what a great nation we are,,,,, even to an englishman!!!!!!!!!!!!!!
Manic Week!! Sorry to put everyone through with my ugly mug on TV!!! However Rhys was great!!! I just hope that it inspires people to move forward onto the Registers, or help the Bubble foundation and take notice of what a great things we have on our doorstep, without all your help Rhys would not be here now!!
This Morning TV show have invited us down. Denise Robertson is the President of the Bubble foundation, so I am hoping we can plug them and also Baldy (Adrian Sudbury) and most importantly the register.
I wish sometimes I could just get on, under the radar, quietly, but I cannot, we have been through so much, and knowing other parents face the same thing has driven me into a media frenzied idiot. Todays News is tommorrows fish and chip wrapping, so i have only one chance in my life to make a very small difference, and the next month is it. And then a nice holiday somewhere with no TV and computers is going to happen, it would be wrong of me!!
Dont forget Tuesday Morning ,, this morning!! Day time tv (Ugh), maybe I should shave my head??? What do you reckon,,, how much?????
All the best to our NEMO families across the world!!! cure4rhys@gmail.com start donating and I may shave,,,,? please dont as my mother will kill me
Go on Wales!!!!!!!!!!!!!!!!!!!!!! Hammer the Boks
This time last year I went to the Conference and gave a speech, Rhys had no Bone Marrow match and life was tough. RAFA immediatley organised a campaign to get Donors right across the RAF. We have been able to keep our house and live in Newcastle because of the help we have recieved by RAFA and the Royal Air Force Benevolent Fund.
It was an honour this year to go back and to talk again, but this time I took Rhys!! A boy who 18 months ago was told he was terminally ill, and thanks to everybodys help he has lived to tell his tale!!
The still serving in our Armed services are not only happy with serving our country overseas in the most inhospitable of places, they come home and want to help more. As Air Vice Marshall (rtd) Phil Sturley rightly noted, our troops have been at war longer than World War ll now. It is a privilege to meet such a wonderful and brave group of people..
Rhys had the time of his life!!!! I have never, ever seen him have so much fun!! Everybody spoilt him rotten!!
It was a real eye opener on just how far he has come, he has always had a Spark, but I feel it is now growing into a flame, I was glad to see my bed!!
Thank you Phil Sturley and all at RAFA HQ that made it possible for me to say thankyou, it is important for your guys to see the end product!!!!!
We now have a future and that is thanks to everyone who reads my ramblings
We were Going to try to come home 'under the radar' so to speak, and only tell a few close friends. However I still think there are statements to be made. To thank everyone but also let the British/Welsh public know how important it is to give Blood and get on the Bone Marrow Register. I guess this is because of a boy called Adrian sudbury (baldys blog), who sadly is going to die as his BMT has failed, however like all good troopers is not going to leave this world with out making a statement. And it dawned on me that we should not just fall back to normal life, we should keep trying to educate others that they can save lives. Rhys would not be here now, if it was not for the Guy in America!!
I have argued with Directors of the Anthony Nolan Trust and the Welsh Blood Service that they're age groups are not medically correct, I have also argued that if it was called a Bone Marrow Transfusion that they would get more and more Donors, they have no clear medical argument and are not will to change things.
I know your saying who does he think he is? They are fantastic organisations and we are very grateful, but things move on but if no one creates a dialogue, the public will still think TRANSPLANT means cutting limbs off or taking organs out and PAIN...
A good friend done Everest for the Anthony Nolan Trust, and wanted it to be mandatory to be on the Bone Marrow Register,, why not???? If you are lucky enough to be a match then is your chance to say no (confidentially), but I now know there are far too many good people out there that would do anything to save a childs life!!!!
Rant over,,, July sometime we go home!!!! It will be fab but also very sad, as Newcastle has given our son and future back to us and we have met some wonderful people..
Rhys is doing exceptionally well, and Prof Cant thinks that that should be it now??? Wonderful news!!
Rhys has been through Hell and back, and then back again, but thankfully has come out the other end and for that we are grateful, we know our friends have not been so lucky Jack and Katy.
Mummy I miss my other house, and my friends at my school...... but when we go home I will miss Martin,,,,,,,,,,,(best friend)..... If I could make 2 of me, one could go home and one could stay with Martin............ Thats a good idea!!!!!!!!!!!!!
And some Smack head nicked my bike!!!!!!!!!!!!!! G rrrrrrrrrrrrr!!!
Our love and best wishes for the future to our roving reporter at the BBC Nicola Smith!!! Congratulations on your engagement!! I will buy my hat, and Rhys looks forward to the big day!!!!! Our journey has brought us together with some wonderful people, I feel lucky, it has been a humbling experience, it has been a pleasure to work with you, you deliver integrity, passion and a real belief in what you do!!!!!!!!!! Although sometimes a bit too perky for a grumpy old man like me!!!! Now I know I left my homing Eagle somewhere???
Rhys is now on 1 weekly visits,,,,,,,,,,,,,,, which is decidely odd?? However wonderful!!!! The Prof and Dr Mario, do not give their optomism freely!! And they are optomistic!!!! I shall never lay my guard down, however, they are far more intelligent than I feel I will ever be, thank all of our gods for that!!!
All is well we are fattening Rhys up!! I never ever want to see him lose that much weight again!!! We are allowed to meet people and take him to the park etc, life is good!!!!!!!!!!
As always out best to Giovanni, Connor, Kelsey, all the kids on ward 23, my new mate Gavin that has the same unfortunate diagnosis as Rhys, However I believe he is in the best hands in the world!!!! And we are all here for him and his family, any hour, any day!!!
I hope those are not famous last words!!! I have been holding back on good news due to a couple of things, firstly Giovanni and his family are having a real tough time and I dont like say much whilst this is happening it seems unfair, but our thoughts and love are with them all as are all the NEMO families and the families that read this blog! Secondly,,,, you always worry that you dont talk something up...
However they are not my words,,,,, they are of someone much higher on the pecking order of all things NEMO and Bone Marrow.... THE PROF,,, Andrew Cant and side kick super Mario Abinum are extremely pleased with the way Rhys has dealt with this al by himself without the use of steriods and any other intervention. The Prof thinks that his body has done exactly what they thought it was going to do and does not see why in his experience it should happen again, he has some fancy bloods to be done on Tuesday which will tell us exactly how his T Cells are reacting. The Prof seems always to be right, not just with Rhys but throughout Europe. Rhys is putting on good weight, and is growing taller!! It was only a short while ago when i actually saw him as a very ill child, but now thank goodness he is back to his normal tricks... My parents have just come and gone, and the boys have had a lovely time with them, Morgan is now known as Geordie Morgan due to his worrying northern accent????
I would love to think that will be that, however there will always be a shadow following us, at the moment we are just enjoying our time together, and having a bit of fun, it is nice to hear the place with some laughter..
Our thoughts and love are with Giovanni, Connor and all the other boys having a hard time, but also for a friend and neighbour we have just found out has been having a tough time!! Good Luck Guys!!!!!!
I got an e-mail earlier from Michael he is Giovannis Dad over in the USA.. Giovanni is one year post transplant and has developed problems and is currently in ICU. We all wish them the best of luck and knowing how tough these kids are, we are all confident he will pull through.
A year today Jack hagelin Died, our thoughts are with his loving parents, Roy and charlotte who remain in touch and are always there for advice. XX Love to your family Guys
As a parent of a Child with such an extremly rare condition, we all seem to travel from one drama to the next. I guess I will never be able to relax. Looking at each anniversary, or each problem overcome, as milestones in our childrens lives. I guess the answer is to be thankful for each day with our children.
Thankfully Rhys seems to be getting back to his normal self, he is eating a bit more and wanting to walk further and participate in more and more.. His stomach is still horridly distended, and he limps and staggers form place to place, but the fact that no matter how hard it must be he still pushes on!! Long may it continue!!!
Well we all survived the North East to South West Cycling adventure, I have to admit we were lucky with the weather for the first 3 days, it was cold but the wind was with us, but coming into Wales was a toughy..
All in All a fab ride, the first day Steve and I cained, however I seemed to always be lagging behind Superdad!! We done 76.7 miles to York in 4 hours 40 minutes, averaging 17.43 miles an hour. York is beautiful, with all the houses a bit topsy, turvy some 500 years old and more ish.. A nice evening was had until Twice nightlys Kitelys head hit the pillow!! Then it was a case of hoping you worked hard enough on the bike to be too tired to hear the snoring!!! We will work harder on the second day, and the poor boy did work hard in the van argueing with Sally Sat Nav!!!
Second day was the one I was dreading, over the Pennines and the Peak District!! I now know why the call it the Peak District!! Beautiful undulating roads through lovely country villages, but lots and lots and lots of hills.. Having lost Russ once as he was having a domestic with Sally Sat Nav, we decided that night they both needed councelling if they were to continue in the same cab together.... Although the journey was tough we both felt in good shape, but not looking forward to the night in the Youth Hostel with Twice Nightly Snoring!! (yes we lied about our age, just incase of the wise cracks,(youth hostel)... Anyhow Steve britton decided after 5 minutes of the light being out that enough was enough and dissappeared upstairs to the TV Room. I got a real good aim with my trainers, but sadly I only had 2??
On the third day, we took some advice off Roger, one of the walkers that was doing the Pennine walkway, having worked in London he decided to see what the countryside was like, but gave us some great advice and told us to start our next ride at the highest public house in the UK, the Cat and Fiddle just above Macclesfield, with the thought of an extremely cool downward ride Steve and I set off with grat Gusto!! Fantastic and what a beautiful place even though it is England??? (Grand Slam!!) We cycled har that day and though many hills nothing too taxing, so we churned out 95.8 miles averaging 16.6 miles and hour, I was by then slowing down and was thankful to Steves encouragement and leadership, we finished off in Leominster.
After a fantastic nights sleep in The Severn farm B&B in Welshpool, we began the hardest day (well for Me), the rain and wind in our face for most the journey... I think every turn of the wheel hurt me, my hercules tendons hurt, my knees hurt and so did my you know what!! But that always hurt,, thankfully after a couple of hour you become numb to all of it!!! We cycled through Hereford on toward Abergavenny and saw the sight I had been looking forward to since the first mile Croeso Y Cymru!! Welcome to Wales!!! The final 20 miles went by pretty quickly and Russ,s relationship with Sally Sat Nav seemed to be on the mend at last!!!
We finally got to the Newport Celtic Manor at 3.15 pm 68 miles in 5 hours at about 13.8 miles an hour!!
I would like to thank Dylan Matthews for the fantastic hospitality at the celtic and the use of his wonderful facilities!!
Also thanks to Burnt Tree rentals for the use of they van!! It was wonderful and just what we needed. thanks to Powerade for the food supplements that just kept us going all the way!!!! And also thanks to Gareth Howells from Ponrypridd Rugby Club!
A big thanks to Russ Kitely our Driver, who is I know is missing Sally Sat Nav and hopes to continue the relationship in a more formal way later.
A special thanks to Steve Britton, who remains a staunt friend and supporter of Rhys and the family, man that constantly inspires me and is mad enough to come along with me at all of my madcap adventures. later in the week we will find out how much money we have raised for the Bubble Foundation thanks to all!!!! Pictures to Follow!!!!
Rhys had a lovely day, we had a little spark out of him so day by day he seems to slowly be mending. I think all that have met him would have been in tears a week ago. He got a Wii which his brother and I played on and he watched on, (my shoulder hurts?). His mum made a Scooby Doo cake, his hero. We went to Pizza Hut, and he had a small peice but he loved the fact that he went out. He is tired but today he kept at it and did not have his normal afternoon snooze.. Again he is concerned about his muscle, so earlier he picked up his feed pump (which weighs as much as him), and walked to the upstairs toilet in our flat, no mean feet as the lounge is 110 square metres before he gets to the stairs..!! He mad himself walk and carry the thing!! That is the Rhys we all know and Love, blindly determined a mental steel that just leaves me dumfounded.
Tomorrow we go and have his blood taken, fingers crossed for the results!
Next week, Steve Britton and I cycle to the Celtic Manor Newport. We are lucky enough to have Russ Kitely at the wheel of the car cheering us on, mainly FFF ing and blinding at us!!? I know my brother would love to join us however his shift pattern does not allow him. 400 and odd hard wet windy miles, hey ho!! Should be fun!!!
This weekend Wales play France, having not lost once, all the team have met Rhys during his time of illness and have supported our every move, they are great Lads and deserve the praise. I would like to think that they're meeting with Rhys put they're life into perspective and gave them the mental steel they have today!!
Hey I gotta try to take some credit on behalf of Rhy!!! Ha! Good Luck Cymru Am Byth A proud Welsh family Away!!!!!!!!!!!!!!!!!! Grand Slam boys!!! Anyone who want to meet up, Celtic Manor 4 Ish.. Guinness
