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

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

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.