28th Nov 2023
Another year older! This year marks Jonah’s "9th Birthday" from the date he received his Bone Marrow Transplant. Forever grateful to everyone who helped care for Jonah throughout his fight - and to his wonderful donor Martyn, who gave Jonah the ultimate gift of Life. Pictured together in Nov 2019
28-11-2021
Another year older!
Jonah celebrated his "7th" birthday on Sunday - marking 7 years since he received his life saving bone marrow transplant!
We are all so very, very grateful to his wonderful donor Martyn (though the Anthony Nolan register) and to everybody involved in his care and recovery - the wonderful NHS and the amazing team on Frossard Ward. Every single milestone Jonah accomplishes is a total blessing.
We continue with our Charity and helping others. Please, please get in touch if you or anyone you know could do with a little support.
Don’t forget, it you haven’t done so already, PLEASE sign up to the Anthony Nolan register - For someone with blood cancer or a blood disorder, an amazing stranger donating their stem cells could be their best chance of survival.
If you sign up to the Anthony Nolan stem cell register and one day come up as a genetic match, you could be that amazing stranger. Without you, there is no cure.
https://www.anthonynolan.org/help.../join-stem-cell-register
2020 - 2021
What a strange time it has been for all of us over the last 16 months or so. Covid has certainly changed the way we all live and function for the time being and is something that we have all learned to live with and adapt to.
Jonah’s health continues to improve and due to the current Covid situation he now has annual telephone consultations with his specialists to see how he is getting on. His blood levels are all where they should be and his kidney function continues to increase which is fantastic news as it puts him at less risk of needing a kidney transplant in the future.
He is currently undertaking an apprenticeship scheme which he is now able to do so, now that the crucial years of recovery have passed.
Helping Others - we continue to raise money to Help Others 😊 who face challenging times:
Assisting and supporting families financially
We have assisted several local families with various expenses – from boat fares and air fares, travel expenses and living expenses – which many families unfortunately face when having to go off Island to support their children. This helps ease the burden of additional costs at such an already difficult and traumatic time. We continue to assist any families that need our support.
Support for children
We have gifted IPads and various equipment to children to help their hospital stays a little easier and to enable them to catch up with schoolwork, friends and family
Frossard Ward
We continue to support Frossard Ward in any way we can. We have fulfilled their wish list of toys and games for children to enjoy when they visit the ward, purchased prams, bedding, Christmas decorations, books and various items that the Ward was in need of. We are a contact for Frossard Ward should any patients need our help.
2019
It’s been a while since an update - simply because things have been ticking along nicely and Jonah’s check ups are now annually!
A few milestones have been reached since our last update.
March 2018 - Jonah commenced full-time employment late March 2018 and is very happy in his job, saving lots of pennies and doing lots of travelling.
October 2019 - We celebrated his 21st Birthday with family and friends which was a very special time for us all.
November - Jonah had his annual Echocardiogram and Pulmonary function tests in Southampton and the results are really pleasing. His lung function is a little below par but has improved since last year.
November 28th - a very important date for us as this will mark 5 years since his Bone Marrow Transplant and we will be celebrating Big Time!!!!
March 2018
Update (no news has been good news) 😁
Jonah had his 6 month check up recently with one of the Renal specialists from Guy's Hospital. All excellent news!! His levels are the best they have been and there are no signs of relapse. Such a massive relief and a huge weight off our shoulders as we get so anxious and unsettled towards check up time.
I think we are finally moving forward now with confidence and we continually thank our lucky stars at the outcome of this awful experience. It's scarred us but it won't stop us xx
December 2017
We've had a few things to celebrate and be thankful for over the last couple of months.
October - Jonah celebrated his 19th birthday - such a joy celebrating every new birthday he reaches.
November - Jonah had his first set of bloods tested in 3 months and after an anxious wait the results were all good! His kidney function continues to improve and all his levels are normal. Such a massive relief. His next blood test will be in February 2018.
28th November - a very important date. We celebrated his "3rd Birthday" - 3 year's since his bone marrow transplant! Such an emotional day when we reflect on what we are celebrating.
July 2017 Fantastic News!
Jonah met up with Dr Gilbert (his renal doctor) in Southampton on 31st July for his 3 monthly check up. He was absolutely thrilled with Jonah's progress - his blood levels are all really good and he was amazed at his overall appearance. He then delivered the fantastic news that Jonah can now be discharged from Southampton's care!
He was amazed and overwhelmed at how far Jonah had come in such a short period of time. He wished him all the best for the future and added that it was an absolute pleasure knowing him. It was an emotional visit and we are forever grateful to Dr Gilbert and his wonderful team for getting Jonah back to good health.
He will continue his monthly visits to the Renal Unit in Guernsey and will see a specialist from Guy's Hospital every couple of months for the foreseeable future.
Well done Jonah - we are immensely proud of you. x
May 2017
Where we are now. Well we seem to have found some form of normality again - and it's amazing! Jonah is really well, positive, healthy and happy. What more could we ask for! He now has his bloods taken monthly as opposed to fortnightly and his most recent visit showed his blood pressure at its best - which is great news as he recently reduced his medication for this and this now seems to be stable.
He is coming to the end of his 2nd year at College (Art & Creative Design) which he thoroughly enjoys and works really hard at. He also has two part time jobs outside of College hours. We couldn't be prouder of him for his determination in everything he does and for his positive outlook on life which could have been so very different for us all.
We are so very, very grateful to everybody for their support, fundraising, donations and positivity through what has no doubt been the toughest couple of years I think we will ever experience.
Jonah modelling at the recent Guernsey Teenage Cancer Trust charity event
05-03-2017 - BRISTOL FOR A CHECK UP AND TO MEET JONAH'S DONOR !
Jonah and Martyn - his Donor
What a wonderful, emotional weekend. This is Martyn - Jonah's Donor. A truly lovely guy who gave blood/bone marrow so Jonah could be here with us today. Just one of the many amazingly, wonderful people who have helped Jonah along the way, including all the devoted Doctors and Nurses, Anthony Nolan, support workers, fellow patients and parents and all the caring people who have supported us in this constant battle.
Thank you all xxx
12-01-17 - HAPPY NEW YEAR!
Jonah continues to progress in the right direction! His latest blood results were very promising and he is feeling very well in himself. It is coming up to 4 months since his last infusion and things are looking up! We head back to Southampton in February for a follow up with his Renal Team and to discuss where we go from there. We're also heading to Bristol in March for an appointment with the Bone Marrow Transplant Team - we are also hoping to make contact with Jonah's Donor as it is now over 2 years since transplant. This will be a very special occasion!
15-12-16 - SEASON'S GREETINGS
It's now nearly 3 months since Jonah's last dose of Eculizumab. He continues to have his bloods tested fortnightly at our local hospital which is quick and simple and we usually get the results back the following day. It's a bit of an anxious waiting time for us along with lots of finger crossing - but we are so pleased to say he is doing really well and his levels are all progressing the right way. His kidney function has also improved. He doesn't need to go back to Southampton until February for a follow up so it's lovely being able to relax a little and we are all really looking forward to spending Christmas together this year. We are continuing to raise funds for the Charity and hopefully will soon be able to Help Others where needed.
Merry Christmas to you all and best wishes for a happy and healthy New Year and thank you for your continued support xxx
18-10-16
Jonah has now moved into adult services - after he celebrated his 18th Birthday on the 8th October! We met with both the Renal Team and Oncology Team and were very pleased with both units. He had his bloods taken (almost 4 weeks after his final Eculizumab) and the results were brilliant. So far so good. We are over the moon with this.
4-10-16
Two weeks today since Jonah's last dose. He was due to go to the hospital today for blood tests but unfortunately has a tummy bug so we will hopefully go up Thursday instead. It is still very early stages but Jonah appears very well despite the bug.
20-9-16 - Last dose of Eculizumab
Big day today! Jonah's last planned dose of Eculizumab.
Such a mixed bag of feelings and emotions these last couple of weeks as today has drawn closer. The excitement and relief that he may be able to remain off of it - followed then by the fear that he can't and it will return. The awful not knowing.
It would just be the most amazing outcome if he can cope without it, if the year's treatment has been enough to get the aHUS out of his system. If he can then start to look at life outside hospital appointments and commitments and become who he wants to be. To enjoy life and to explore the options out there.
After today's infusion, Jonah will continue to have bloods fortnightly for the next 3 months to monitor his levels followed by an appointment with his renal specialist in Southampton mid December. A very anxious time ahead for all of us and I'm dreading the waiting each fortnight for the results to come, to determine which way we are heading.
Good luck Jonah, you have amazed us all with your resilience and strength to recover from everything that has been thrown at you so far. Let's kick this final hurdle out of the way too. 😍😍😍
9-9-16
Great News and fingers tightly crossed. It is planned that Jonah will receive his final treatment of Eculizumab on 20th September. He will then receive fortnightly blood tests for the following 3 months. His Dr and specialist team in Southampton are confident that a year's course has been effective enough in treating his condition (although he is only 1 in 6 cases) so there is no real protocol to go by.
It is going to be a very anxious time for us all and we can only hope and keep everything crossed that Jonah has beaten this and he can remain off the medication.