Last week we celebrated Rhys's one year post transplant!!
Day Zero is a momentous occasion, this is when a child, person's immune system has been effectively knocked out.. Zero Immune system, this allows the new immune system to take effect without hindrence.. A tough time,, the days before I was worried that the Donor may pull out, get knocked over or even the flight going down, I guess you have a far too much time too think in those cells. Thankfully the day past!! Thank Goodness to his donor A male from the USA!! We have been allowed to send him a card but it has to be anonomous??!! So I wrote it in Welsh!!!
A young, young boy named Daniel had a tranplant the same time as Rhys in the next cubicle... He sadly died recently, we were close to his parents, very close!!! We are lucky!!! And our heart go out to his loving doting parents. Although they lived in Ireland they were always by his side.. He had lots of issues and his spirit never gave up, his heart failed him under intense and constant pressure!! He can now rest, knowing he is loved and will never be forgotten.
Rhys continues to Blossom!! He loves life and is seizing each and every day!! He is learning to swim and constantly has his head in the fridge!!!! And is chubbing out very well!!! He just ran past me with a plate full of jaffa cakes!!
One year ago yesterday, Rhys began his Chemotherapy.. I really did not know whether I had just signed his death warrant, as the Prof told me, 'Rhys was going to die very shortly' if the tranplant did not take place. (so no pressure there).
I remember the days preceeding, were just a battle to fight for every last possible minute with Rhys before transplant, we were being pulled from pillar to post by the liaison team for tests and appiontments, I felt my orderly world being pulled apart. This led to many a conflict so much so I was going to pull Rhys out of the transplant.
I knew Ward 23 Newcastle was the 'last chance saloon' as it is for all those kids. And was not a dignified death, however where there is life there is hope, and I believed in the Prof and Mario,, but most of all I believed in Rhys.
So we proceeded, I would like to say that we went in nice, quiet and dignified, but all those that know me, know that is not my way... This was WAR and I treated it as such..sand bags out and digging in! I watched and questioned everyone, and nobody that did not get my respect was allowed in the room, only the best was good enough. I was tough on them, tough on me, tough on my loving wife.
It was horrible watching your own son disitergrate in front of your very eyes... The chemo wipes out your immune system. Your immune system is also your throat lining, stomach lining, intestinal lining, all this was ripped apart in order for us to get to day ZERO... Zero immune system, no protection, but allowing his new bone marrow to be introduced.
Sorry!! Having moved back to Wales, another journey up to Newcastle to empty the Flat, and then a 3 week holiday in France, then another trip to Newcastle to see Mario for a check up.... Seems like time has just flown by!!!
Although tiring it has been a wonderful time!! France was fab!! Let Rhys do all the things he should not have!! As you all know I believe putting a smile on his face is the best medicine, so he swam, fished, played, all the things normal children should do...... The first day we got there I took the Stabilisers off bothe Rhys and Morgans Bikes and within an hour they were riding 2 days later they were cycling around thecampsite (much to Dawns distress), only a few bruises to show!!
Oh yes I nearly forgot, just before we went to France we were invited to fly in a Helicopter by www.fly2help.org
What a great day!! And what a lovely Charity thank you everyone, I am sure you have made 2 future aviators especially Morgan! Thanks Guys a day we will remember for the rest of our lives.
Rhys and I have just got back from Newcastle, 7 and a half hours on a Friday afternoon (nightmare), however we come back with with brilliant news!! super Mario has made a brave move and has taken Rhys off all his TB drugs, so we gain a kitchen unit back!!!! 5 Drugs 3 times a day, and the most foul things you would ever want to taste, however Rhys has been on these for over 2 years now!! Some can cause tendonitus, which we think has caused him to walk on his tip toes since hospitalisation, and they also havethe effect of slowing down his White Blood cells... The hope is that his body is now able to cope with the Mycobacterium itself without relying on the drugs, I am positive that Rhys can cope now and I am personally chuffed that Mario has made this brave decision, and the next few months will tell!!!
In October it will be 12 months post transplant!!! My wish is that the guy who donated his bone marrow to save Rhys has ticked he box for us to contact him!!!
Rhys starts school next week!!!! As I always say Health then education, after so long in isolation it is important for him to get back to his friends that have missed him so much, as I know he has missed them and the social interaction!!!
All our love to all the NEMO families, and everyone that has supported Rhys and his journey, sometimes Miracles do Happen. Just to put things into perspective, whilst Rhys was in hospital 2 years ago spiking fevers, even a few of the Doctors said to let him go home and die in peace with his famliy. However he was treated aggressively and although watching him go through the hell of constant blood takings and biopsy's, it was all worth it! Thanks Stephen Jolles, Bernie O'Hare, Iuean Davies, and all the rest of the Team at University Hospital of Wales, Noahs Ark.
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!!!!!!
