For every one who bid, donated or just took an interest in his story, here is an update on Aaron from his amazing wife Saraya:-
'Sorry we’ve been quiet this week guys, it’s been quite a difficult week. The amount Aaron varies day to day is wild really, he’s been needing 24 hour care most days so I haven’t had time for much else. I know I’m behind on messages but will catch up in the next couple of days. Most of that is due to the problems with his eyes, some days it is too much to even open them, whereas others he is absolutely fine with an eye patch on the bad one. But he is still getting those good days and making the most of them.
We are currently back in Germany for immunotherapy but only for a few days this time. Last time he had the immune priming and immune education, and this time he is having the first immune activation part. Fingers crossed. He’s been using eye drops to reduce the pressure behind the eyes so was safe to fly this time, much easier than the 14 hr drive last time!
Aaron has a lot of cancer at the moment, lots of new lumps have developed in the past few weeks, and so ideally he needs his tumour burden to be reduced in order for the immunotherapy to work as well as it possibly can. Chemotherapy can hopefully do this and also works synergistically with immunotherapy. If you use chemotherapy to kill cancer cells, it stimulates the immune system and brings immune cells (or T cells) to that area, helping with the immunotherapy. So today the German and UK doctors spoke to each other, and the UK consultant has agreed to give Aaron a new chemotherapy at home alongside his immunotherapy here. We don’t know when that will start but I’m expecting to hear back from them tomorrow and hopefully it won’t be too long.
It’s Aaron’s 30th birthday on Friday which is a pretty amazing thing, a milestone he has often thought he wouldn’t reach. We have something exciting planned that we are hoping to launch on his birthday so look out for that. Friday will be an unusual birthday as he needs a blood transfusion because his haemoglobin is really low and he’s symptomatic, so we’ll be at the hospital all day but hopefully it’ll make him feel a bit better ready for our lovely friends wedding on Saturday!
Something amazing happened last week, during a meeting with our friend a couple of weeks ago Martin Vickers MP said he would do all he could to raise awareness of Aaron’s situation. He stuck to his word and the following week he brought Aaron’s case up in the House of Commons when they had health questions, he asked health ministers what was being done to introduce this type of treatment to England. He was assured that innovative new treatments will be at the centre of the new long term plan for the NHS. This might not seem like a big deal, but it really is for everyone in a situation even slightly similar to ours and for the future of targeted cancer treatments in the UK. He will now be meeting with the national cancer director on our behalf. These questions need to be asked and the issue needs to be pushed for change to happen. Hopefully he will continue to support us in doing so.
Fundraising has been absolutely amazing the past couple of weeks, and I know so much is planned in the next couple as well. Sorry we haven’t always got as much time as we’d like to thank people, we just hope you know how much we appreciate it. All of this is only happening because of the support and hard work you guys have shown!
Lots of love as always guys, Saraya xxx'
Thank you again for all your interest and good wishes, fundraising is now at over £174,000 which is incredible and we are absolutely determined that we will reach our £300,000 target.
Sounds like he's still suffering badly, do hope he can enjoy his 30th on Friday.
I spoke to him this afternoon, flying back tonight then straight into Leeds tomorrow, hopefully they will do the transfusion before Friday. I am driving up Friday afternoon, will be lovely to see him for his birthday
The latest news on Aaron isn't great, but as ever he is still fighting. He recorded a song a couple of weeks ago, which he wrote and performs himself along with some of his mates, it's inspirational to me and hope some of you will download and have a listen, it's his struggle in his words. Check it out on Bandcamp, just search for Aaron's Battle.
Update from Saraya below copied from Facebook
'So much has happened it the last few days/week that it's hard to know where to start.
Last Saturday was amazing, Aaron managed the full day at our friends wedding and had a brilliant time. It was clear that the good days were become fewer and harder though and Sunday brought a very bad day. Monday we went to Leeds for a couple of days for hospital appointments and saw Aaron's consult, it was a very sad and stressful couple of days. Basically the immunotherapy takes a while to work and so Aaron was taking these extra tablets that I described before as a sort of protein blocker, to try and reduce the tumour burden quickly. Unfortunately these tablets did not work and the cancer is still growing rapidly. So what happens now? Well essentially we need to buy Aaron more time so the immunotherapy can start to work (it takes many weeks). The only thing left that can do that is more chemotherapy. We were advised that the UK consultant did not think Aaron should be given the new chemo and it could put him into the last few days of his life. The German doctors do agree that the chemo is risky but not quite as much. Essentially Aaron was left with 2 options, he could decide he'd had enough of treatment altogether, take high dose steroids (which would cancel out the immunotherapy) to make him feel better in the short term and enjoy what would likely be the last couple of months max of his life. Or take the risk, try the chemo and hope it buys him the time he needs for the immunotherapy to start to work. Aaron is in no way ready to give up so he's decided to have the chemo. Because the German doctors seem more positive about the chemo and the whole situation in general, plus because he'd need to be here in 2 weeks anyway for the immunotherapy we decided it would be best to go back to Germany for the chemo. It was thought that if he did want to do that he'd only have a small window of probably a few days that he'd still be well enough to cope with the journey, so we packed up and headed back over with both of our mums yesterday. Aaron will need blood transfusions and a few other bits and bobs to get his body to a level where he can have the chemo, and then will hopefully start it on Monday.
He's exhausted, terrified and very poorly but he's still strong as hell and fighting with everything he's got! I'm trying my hardest to keep his spirits up and remind him that we've still got this, sometimes things just have to get harder before they get easier. It helps that you always meet other patients here who have amazing recovery stories after being in the most dire situations, and after the doctors in their own country have given up on them. A reminder that if they can do it so can we!
As for fundraising, us being quiet seems to make no difference, you guys are incredible and just keep it going for us no matter what, which is exactly what Aaron needs when he’s this poorly. There’s so much stuff going on this week it’s absolutely amazing and we can’t thank you all enough. Without it Aaron would have had to stay at home and give up fighting, you guys have given him this chance.
Aaron also wants me to remind everyone about the song he wrote and made with the help of his talented friends. It’s available now at aaronsbattle.bandcamp.com and he says he’d be grateful if you could keep sharing the link. Let’s get it out there and show the world how amazing this town is.
Now we have arrived and are settled hopefully I’ll have more time to get on top of things and keep you all updated.
Lots of love as always guys.x
Thanks for reading, just sharing and knowing his story and bravery are out there help.
Such a heartbreaking story that's difficult to read until you appreciate what a tremendous fight young Aaron is putting up to conquer this evil disease.
Coming close on the heels of the tragic passing of dear little Jack Jeffreys who will always be "one of our own", I'm finding it hard to get caught up in another desperate battle for life by another young man who should have his whole life yet to be lived.
But I send to Aaron every good wish that the next round of treatment he so badly needs proves to be a success and that he may start looking forwards once again with renewed hope.
Please pass on our love to him and Saraya with the hope that the next news you relay to us here will be positive.
Such a heartbreaking story that's difficult to read until you appreciate what a tremendous fight young Aaron is putting up to conquer this evil disease.
Coming close on the heels of the tragic passing of dear little Jack Jeffreys who will always be "one of our own", I'm finding it hard to get caught up in another desperate battle for life by another young man who should have his whole life yet to be lived.
But I send to Aaron every good wish that the next round of treatment he so badly needs proves to be a success and that he may start looking forwards once again with renewed hope.
Please pass on our love to him and Saraya with the hope that the next news you relay to us here will be positive.
Thanks for sharing the latest Jane. So sorry to read that Aaron is having such a tough time, things looked so promising in Germany, so hope the chemo works well enough to give him another shot at the treatment he so desperately needs. His fighting spirit has got him this far. so know he has the will to live, will be praying doctors have the ability to keep him going until they can save him. Please pass on love and all best wishes to him.
Thanks for sharing the latest Jane. So sorry to read that Aaron is having such a tough time, things looked so promising in Germany, so hope the chemo works well enough to give him another shot at the treatment he so desperately needs. His fighting spirit has got him this far. so know he has the will to live, will be praying doctors have the ability to keep him going until they can save him. Please pass on love and all best wishes to him.
Thanks Jean, we are all just praying that his body can take the chemo required before the immunotherapy starts to work. I will pass on the love, it really does keep him fighting knowing he has so many people supporting him x
Hi, been quiet for a little while as very up and down in Germany. Just when I have news of a good day a bad follows or vice versa however news has been stable for a few days so thought I would update with latest post from Saraya
What’s that!? 3 good days in a row!? Yep.
Don’t get me wrong the days still aren’t easy for Aaron. He’s unsteady on his feet so can’t really do anything by himself which is obviously frustrating for him, and he still has to deal with more than most people can probably imagine each day, but he’s been a lot more alert and mobile the past few days. He’s also had much less pain and is over the worst of the chemo side effects, his bad eye is still awful but the good eye has settled back down.
We’ll be staying here for at least the next couple of weeks until it’s treatment time again, they want to keep a close eye on him and make sure he’s getting platelet etc transfusions quickly when he needs them. So he’ll just be getting his bloods done each day/a few times a week depending how it goes which won’t cost us a fortune.
The plan is keep him as well as possible and build up his strength as much as we can ready for the next round of treatment.
Of course there will be good days and bad as always but hopefully many more of the good to come ready to kick arse again come treatment time.
He’s been tired today but we did have a decent walk yesterday and he’s still in great spirits.
So good news at the moment, fundraising has been brilliant and still loads going on. Its actually my daughters birthday today and instead of presents she asked anyone who would normally get her one to give her the money for Aaron instead so hopefully that will push us over the £210,000 mark
Hey everyone, I think it’s fair to say so far we’ve had a very up and down week. I’ve felt absolutely exhausted over the last couple of days. I’ve needed more platelets today and getting a blood transfusion tonight. It’s all very scary. Terrifying in fact. But so happy I have my beautiful wife here to keep me going. She is literally washing me everyday. Just looking at her keeps me strong. And knowing I have my army at home really helps me get out of bed every day. I know I can beat this, it’s just bloody hard work getting there!
Just wanna thank you all for everything you’re doing for me at the moment. As usual there are far too many names to name and it’s all very overwhelming. I hear there’s a lot planned for the carnival this weekend so can’t wait to hear all about that!
Unfortunately we’ve got to stay in Germany for a few weeks longer as the clinic are trying to keep me fit enough for the next round of chemo and immunotherapy (after the next one we should start to see improvements). I’m sad to remind you that it all costs money which is something we’re getting pretty low on right now. Any support is appreciated as always. Sharing this post is just one way you can do that.
I do a lot of thinking about Aaron and his battle, I'm not a religious man however hopefully my thoughts are as good as prayers. And I'm thinking of you all. Come on Aaron
I do a lot of thinking about Aaron and his battle, I'm not a religious man however hopefully my thoughts are as good as prayers. And I'm thinking of you all. Come on Aaron
Comments
Shirt £200 @ryanj
Ball £160 @ryanj
Photo £35 @Rob7Lee
Just in case anyone else is tempted
I'll DM the two successful bidders @ryanj and @Rob7Lee and arrange payment/delivery.
Thank you so much to everyone and I'll keep you all updated.
Special thanks to @HantsAddick and @Tracey Leaburn for the donations of the items for auction.
Jane x
'Sorry we’ve been quiet this week guys, it’s been quite a difficult week. The amount Aaron varies day to day is wild really, he’s been needing 24 hour care most days so I haven’t had time for much else. I know I’m behind on messages but will catch up in the next couple of days. Most of that is due to the problems with his eyes, some days it is too much to even open them, whereas others he is absolutely fine with an eye patch on the bad one. But he is still getting those good days and making the most of them.
We are currently back in Germany for immunotherapy but only for a few days this time. Last time he had the immune priming and immune education, and this time he is having the first immune activation part. Fingers crossed. He’s been using eye drops to reduce the pressure behind the eyes so was safe to fly this time, much easier than the 14 hr drive last time!
Aaron has a lot of cancer at the moment, lots of new lumps have developed in the past few weeks, and so ideally he needs his tumour burden to be reduced in order for the immunotherapy to work as well as it possibly can. Chemotherapy can hopefully do this and also works synergistically with immunotherapy. If you use chemotherapy to kill cancer cells, it stimulates the immune system and brings immune cells (or T cells) to that area, helping with the immunotherapy.
So today the German and UK doctors spoke to each other, and the UK consultant has agreed to give Aaron a new chemotherapy at home alongside his immunotherapy here. We don’t know when that will start but I’m expecting to hear back from them tomorrow and hopefully it won’t be too long.
It’s Aaron’s 30th birthday on Friday which is a pretty amazing thing, a milestone he has often thought he wouldn’t reach. We have something exciting planned that we are hoping to launch on his birthday so look out for that.
Friday will be an unusual birthday as he needs a blood transfusion because his haemoglobin is really low and he’s symptomatic, so we’ll be at the hospital all day but hopefully it’ll make him feel a bit better ready for our lovely friends wedding on Saturday!
Something amazing happened last week, during a meeting with our friend a couple of weeks ago Martin Vickers MP said he would do all he could to raise awareness of Aaron’s situation. He stuck to his word and the following week he brought Aaron’s case up in the House of Commons when they had health questions, he asked health ministers what was being done to introduce this type of treatment to England. He was assured that innovative new treatments will be at the centre of the new long term plan for the NHS. This might not seem like a big deal, but it really is for everyone in a situation even slightly similar to ours and for the future of targeted cancer treatments in the UK. He will now be meeting with the national cancer director on our behalf. These questions need to be asked and the issue needs to be pushed for change to happen. Hopefully he will continue to support us in doing so.
Fundraising has been absolutely amazing the past couple of weeks, and I know so much is planned in the next couple as well. Sorry we haven’t always got as much time as we’d like to thank people, we just hope you know how much we appreciate it. All of this is only happening because of the support and hard work you guys have shown!
Lots of love as always guys, Saraya xxx'
Thank you again for all your interest and good wishes, fundraising is now at over £174,000 which is incredible and we are absolutely determined that we will reach our £300,000 target.
Jane x
Update from Saraya below copied from Facebook
'So much has happened it the last few days/week that it's hard to know where to start.
Last Saturday was amazing, Aaron managed the full day at our friends wedding and had a brilliant time. It was clear that the good days were become fewer and harder though and Sunday brought a very bad day. Monday we went to Leeds for a couple of days for hospital appointments and saw Aaron's consult, it was a very sad and stressful couple of days. Basically the immunotherapy takes a while to work and so Aaron was taking these extra tablets that I described before as a sort of protein blocker, to try and reduce the tumour burden quickly. Unfortunately these tablets did not work and the cancer is still growing rapidly. So what happens now? Well essentially we need to buy Aaron more time so the immunotherapy can start to work (it takes many weeks). The only thing left that can do that is more chemotherapy. We were advised that the UK consultant did not think Aaron should be given the new chemo and it could put him into the last few days of his life. The German doctors do agree that the chemo is risky but not quite as much. Essentially Aaron was left with 2 options, he could decide he'd had enough of treatment altogether, take high dose steroids (which would cancel out the immunotherapy) to make him feel better in the short term and enjoy what would likely be the last couple of months max of his life. Or take the risk, try the chemo and hope it buys him the time he needs for the immunotherapy to start to work. Aaron is in no way ready to give up so he's decided to have the chemo. Because the German doctors seem more positive about the chemo and the whole situation in general, plus because he'd need to be here in 2 weeks anyway for the immunotherapy we decided it would be best to go back to Germany for the chemo. It was thought that if he did want to do that he'd only have a small window of probably a few days that he'd still be well enough to cope with the journey, so we packed up and headed back over with both of our mums yesterday. Aaron will need blood transfusions and a few other bits and bobs to get his body to a level where he can have the chemo, and then will hopefully start it on Monday.
He's exhausted, terrified and very poorly but he's still strong as hell and fighting with everything he's got! I'm trying my hardest to keep his spirits up and remind him that we've still got this, sometimes things just have to get harder before they get easier. It helps that you always meet other patients here who have amazing recovery stories after being in the most dire situations, and after the doctors in their own country have given up on them. A reminder that if they can do it so can we!
As for fundraising, us being quiet seems to make no difference, you guys are incredible and just keep it going for us no matter what, which is exactly what Aaron needs when he’s this poorly. There’s so much stuff going on this week it’s absolutely amazing and we can’t thank you all enough. Without it Aaron would have had to stay at home and give up fighting, you guys have given him this chance.
Aaron also wants me to remind everyone about the song he wrote and made with the help of his talented friends. It’s available now at aaronsbattle.bandcamp.com and he says he’d be grateful if you could keep sharing the link. Let’s get it out there and show the world how amazing this town is.
Now we have arrived and are settled hopefully I’ll have more time to get on top of things and keep you all updated.
Lots of love as always guys.x
Thanks for reading, just sharing and knowing his story and bravery are out there help.
Jane x
Such a heartbreaking story that's difficult to read until you appreciate what a tremendous fight young Aaron is putting up to conquer this evil disease.
Coming close on the heels of the tragic passing of dear little Jack Jeffreys who will always be "one of our own", I'm finding it hard to get caught up in another desperate battle for life by another young man who should have his whole life yet to be lived.
But I send to Aaron every good wish that the next round of treatment he so badly needs proves to be a success and that he may start looking forwards once again with renewed hope.
Please pass on our love to him and Saraya with the hope that the next news you relay to us here will be positive.
Jean
x
I will pass on the love, it really does keep him fighting knowing he has so many people supporting him x
What a terrible story.
Good luck Aaron
What’s that!? 3 good days in a row!? Yep.
Don’t get me wrong the days still aren’t easy for Aaron. He’s unsteady on his feet so can’t really do anything by himself which is obviously frustrating for him, and he still has to deal with more than most people can probably imagine each day, but he’s been a lot more alert and mobile the past few days. He’s also had much less pain and is over the worst of the chemo side effects, his bad eye is still awful but the good eye has settled back down.
We’ll be staying here for at least the next couple of weeks until it’s treatment time again, they want to keep a close eye on him and make sure he’s getting platelet etc transfusions quickly when he needs them. So he’ll just be getting his bloods done each day/a few times a week depending how it goes which won’t cost us a fortune.
The plan is keep him as well as possible and build up his strength as much as we can ready for the next round of treatment.
Of course there will be good days and bad as always but hopefully many more of the good to come ready to kick arse again come treatment time.
He’s been tired today but we did have a decent walk yesterday and he’s still in great spirits.
So good news at the moment, fundraising has been brilliant and still loads going on. Its actually my daughters birthday today and instead of presents she asked anyone who would normally get her one to give her the money for Aaron instead so hopefully that will push us over the £210,000 mark
Jane x
Hey everyone, I think it’s fair to say so far we’ve had a very up and down week. I’ve felt absolutely exhausted over the last couple of days. I’ve needed more platelets today and getting a blood transfusion tonight. It’s all very scary. Terrifying in fact. But so happy I have my beautiful wife here to keep me going. She is literally washing me everyday. Just looking at her keeps me strong. And knowing I have my army at home really helps me get out of bed every day. I know I can beat this, it’s just bloody hard work getting there!
Just wanna thank you all for everything you’re doing for me at the moment. As usual there are far too many names to name and it’s all very overwhelming. I hear there’s a lot planned for the carnival this weekend so can’t wait to hear all about that!
Unfortunately we’ve got to stay in Germany for a few weeks longer as the clinic are trying to keep me fit enough for the next round of chemo and immunotherapy (after the next one we should start to see improvements). I’m sad to remind you that it all costs money which is something we’re getting pretty low on right now. Any support is appreciated as always. Sharing this post is just one way you can do that.
Much love
Aaron ❤️❤️❤️
Keep on keeping on, Aaron.
x
At the moment all I can say is if you pray, please pray for Aaron he needs every bit of help he can get.
Thanks
Jane x