Hi Erica
Yes the outdoor walks are lovely. I honestly never realized how much energy a walk requires after going through the Transplant !
Last year I could just get up and walk without any pre planning but wow this is so different.
However I’ll get there , a bit at a time. The weather is great just now so it definitely helps.
Onwards & upwards is the motto.
I hope you’re well and managing to enjoy some late summer / early autumn sunshine.
Fiona x
Hi @SarahMum & Danae
How are things going ? Hope Danae has been enjoying all the lovely foods that she picked to have , while at home.
Best Wishes
Fiona x
Hi @Fifimac
Thanks for checking in. We were having a lovely time at home (eating and mooching) until last Saturday afternoon. Danae started to feel ‘meh’ - she had a temperature so we had to go back into hospital via ED (that was fun on a Saturday night?!)
So she has been pretty rough with an infection but today is her first day of feeling and looking brighter which is great. Neutrophils are starting to come back in (with the help of injection) 0.5 today so they are helping.
How is life at home @Fifimac . I hope you continue with onwards and upwards? It is quieter down in Cornwall now we head into Autumn (not that I have seen much more than the D’s hospital room for the past week). We hope to be allowed out soon…
And hello @Fullofbeans - start spreading the news - you NY babe you 
. Hope you had a truly fabulous time in the Big Apple 
?
Hope everyone else is all doing okay out there? Look after yourselves lovely peeps and will keep you posted
Sarah and Danae xx
Aw, so sorry to hear Danae had an infection, @SarahMum. They’re the bane of our lives. But glad she (and no doubt you) are feeling a bit better today. Abd glad to hear the neutrophils are going up. Those injections do the trick. But oh blimey - A and E on Saturday night! Danae’s determined not to miss out on her nightlife, no matter what her situation - but that is a bit extreme!
Yes, lovely to have a quieter Cornwall, huh? If only you could both get at it, from behind the hospital window! I remember looking out at about this time of year, and wishing to be able to breathe the fresh, autumnal air. Hopefully you both can very, very soon.
Well, NY was certainly an experience! Unfortunately, I got… an infection! Yes, really. 
A covid lookalikey. So I had my fun and games somewhat curtailed. But actually we went there for my son, whose dream holiday it was - and he was still able to have a blast with his dad. And I managed bits and pieces. The e-scootering was a highlight! (mainly because at 30 mph in a city heatwave it cooled my feverish brow .) But hey - I suppose we all get ill at least once on holiday in our lives, so c’est la vie.
Well, best pick the said spoiled lad up from college.
Love to you both, and hope you’re 100% very soon Danae. X X
Oh, @SarahMum infections make me feel so rough, so poor Danae, and they really are par for the course and as @Fullofbeans the bane of our lives.
What a time Danae chose though to go to ED on a Saturday night, I won’t even ask about that experience.
I am glad Danae’s neutrophils are starting to come back up now.
I loved your wording ‘We hope to be allowed out soon’ the two of you really are a brilliant team.
I trust you are still wearing your carers badge and the ‘other other duties’ aren’t too onerous.
Yes, ‘Look after yourselves lovely peeps’ and loads of virtual hugs zooming towards you both. xxxxxxxxxx
Hi guys
Thanks for your replies @Erica and @Fullofbeans Sorry to hear about the infection @Fullofbeans whilst doing your thing in NY city. Glad you managed some experiences and saw some of the city. Great that your son had a blast and got his dream holiday.
So, we been back at home for a week now and Danae is looking good. I also have an update which is positive (as well as a little bit scary). Here goes…
We have had a meeting with Danae’s lead consultant. He shared the fantastic news that Danae’s minimal residual test came back from Guy’s as she is in remission 
. He was very honest and went on to say that nobody was expecting that due to the horrible gene mutations she has. So, he went off and spoke to the top Acute myeloid leukaemia (AML) consultant at Guy’s whose laboratory undertakes all the residual tests. He checked the database of all tests and there has only ever been one other individual with the same genetic mutations that has had a remission result.
The team have considered everything and have proposed that Danae does not go down the stem cell transplant route now. They are now proposing one more round of chemotherapy and then 12 months maintenance therapy using the targeted Midostaurin drug. She would also have 3 x monthly bone marrow biopsies and all of these would go to Guy’s for the residual test. If it does come back it would be picked up quickly and she would then definitely have to go for stem cell transplant.
So, we picked ourselves up off the floor. Slept on it, asked a few more questions and this is now the route Danae has chosen. I am still feeling scared and very emotional about it all but I guess if it is going to come back it will. I wish that it never will and that my beautiful girl can get back to her life - she truly deserves. But if it should then we know she has tried everything and stem cell is definitely the way to go.
They explained that stem cell donors will continue to be explored as no good match has yet been found (the 9/10 match withdrew which was hard for us too)
Sorry for long message. I would really appreciate your thoughts/feelings on this as I feel so close to you who regularly respond and would value your input. #confused #emotional.
I hope all goes well for you all? @Fifimac - how are you doing at home?
Take good care lovely peeps and catch up soon
S @ D xx
Hi @SarahMum
Hi Sarah & Danae
It’s good to hear your news, especially the negative MRD result 🫶🏻 that is amazing and very reassuring for you both.
Do you know the specialist’s name from Guy’s ?
Just before I went for my transplant my MRD was above 1% and they felt this was too high so the Consultant in Glasgow told me she had spoken with Dr Richard Dillon … he was an expert in Acute myeloid leukaemia (AML) , well renowned Nationally and around the world.
He suggested a type of chemo to reduce my MRD then hopefully go for Transplant.
Thankfully it did the trick and as you know I had my transplant.
I have read about him and he seems very knowledgeable in Acute myeloid leukaemia (AML) and well respected in his field.
I hope it has given you & Danae a lift and life can maybe start to take on some form of normality going forward.
3 monthly Bone Marrow tests are reassuring,
( although they’re not pleasant )
We never truly leave the care of our marvellous NHS & Haematology Teams after a diagnosis like we’ve had but it helps to know that they are always there when needed.
I’m so happy that things are going in the right direction at last for you both, Danae so deserves this good news. I hope you both continue to go from strength to strength 
Keep in touch when you can … this is like a wee extended family we have on this group.
We’ve all been through so much.
Much Love
Fiona 
x x x
Oh my goodness, Danae and @SarahMum, that is utterly amazing! Just one other getting complete remission with these genes! And Danae’s the second - just staggering! I’m overjoyed for you both! And it is so well deserved after you have been so brave and stoical, Danae. And you, @SarahMum. Young people really do need a break with this horrible illness. It’s so unfair on everyone, but particularly on young people, who should be getting on with growing, learning and having fun. Oh, big, huge virtual hugs to you both. This is the best news! Thank you for telling us. It has lifted and cheered me enormously.
I can understand the worry you may have about the position you are now in though. Deciding no to the transplant, and let’s see how it goes. But you have absolutely nothing to lose. Danae was having the transplant, but now she’s not unless it returns. If it returns, she’s having the transplant and you’re back to where you were a few days ago. And that position of a few days ago really isn’t so bad. SCTs are a fantastic treatment. Gruelling yes, but life- saving for a big proprtion of people now. If she needs it, she can have it. She has the best treatment there is, in reserve. I think that’s a strong and very reassuring position to be in. You need not live in fear with this knowledge. Both of you can get on with your lives, knowing there is an extremely good treatment available to you yet, that some doctors even call curative these days. If I were in Danae’s position, I would have made the same call. Why have that last, tough treatment if perhaps you don’t need it? Keep it up your sleeve should you really need it.
Also, as you say, should there be a return of the illness, the team have extra time now to find the best match. A 9/10 match is pretty good - but let’s hope some new people register in the meantime, for everyone who’s in need of a special match in the future.
Out of interest, has the other person who achieved complete remission, maintained their remission? And for how long so far? If your consultant was able to tell you a figure of two or three years plus, that really would have encouraged me enormously, because they say the chances of a return decrease dramatically as these first years tick by. Five years would make me whoop with joy.
Well, I should continue the celebrations if I were you! Danae is cancer free, same as me and Fifimac. Sounds strange to you, perhaps? But you are! And you’re nearly free of the worst treatments. You’ve done it, Danae and @SarahMum! CANCER FREE!
I’m so, so happy for you both! Whoop whoop! Loads of love 
X X X
Hi @SarahMum and Danae this sounds like good news to me and a sensible way forward.
As @Fifimac says we never truly leave the care of our marvellous NHS & Haematology Teams after a diagnosis we’ve had but it helps to know that they are always there when needed.
3 monthly bone marrow tests are reassuring (although not pleasant) and mean that Danae is actively monitored every 3 months.
@SarahMum and Danae perhaps you will both feel anxious before and during tests, results and appointment that is very natural, I still feel anxious 19 yrs down the road.
As @Fullofbeans says Whoop, Whoop and loads of virtual hugs from me to you both and really push the boat out with your celebrating.
Please do keep posting as I look forward to hearing how you are both doing.
Awww you lot are sooooooo lovely and you are right @Fifimac - this does feel like a very special family of amazing people 
.
It was Dr Richard Dillon that Danae’s consultant has sought advice from. He sounds a bit of a whizz in all things Acute myeloid leukaemia (AML) so that’s really reassuring too.
@Fullofbeans , I did ask about the other individual. The consultant explained that their leukaemia came back, so they went the stem cell transplant route and sadly lost their fight due to transplant complications. May they now be at peace after their battle. Danae is also aware of this but is right in saying that everyone’s blood cancer is individual to that person.
It is lovely to see her making plans and starting to grow in confidence again. I find it hard to put into words but I feel like this new pathway is like a piece of treasure in a box. Every now and again I open the box to look at it, reassured that it is still there and that each time I dare take a peep the treasure shines a little brighter.
@Erica we will definitely keep posting. Next step is up to the day unit on Monday for bloods, dressing change and to see what date they want her in for round 4 of chemo. She is then heading out that evening for a meal with the TYAC (Teenage and Young People with Cancer) gang. They are off to Wagamama’s and she is really looking forward to it 
Thanks again guys for your positive responses and for making us feel more brave and certain for the future
Take care and enjoy the rest of the weekend. @Fifimac - please let us know how you are feeling and things are going now you are home (when you have chance)
Sarah and Danae xx
I hope Monday goes well, @SarahMum, and that you have a fab evening out at Wagamma’s, Danae! That’s such a lovely, normal thing to do. I remember how ‘special’ normal felt after getting out of hospital myself.
I’m sorry to hear the person quoted by your consultants didn’t make it through Stem cell transplant complications. That’s so sad, and actually something we don’t hear about very often. But Danae is absolutely right - no matter how superficially similar our circumstances, we are all so different in a million ways, and our experience is unique to us.
Hope you both enjoy your weekend too, and keep treasuring your treasure, @SarahMum. It will no doubt take a while for you both to process the amazing, wonderful news.
Lots of love X X
And hoping you are going from strength to strength too, @Fifimac. X
Hi @Fullofbeans
I’m doing pretty good thank you.
Consultants at both the Transplant Unit in Glasgow and my local hospital are pleased with my progress thus far
I have had a wee blip that just started a few days ago, been running to the toilet a lot to pee ( sorry for terminology) 
I can go and do the toilet but I still feel like I need to go , it’s quite uncomfortable.
I spoke to the Consultants so I’m being tested for BK Virus & Adenovirus , had to hand samples in yesterday and had blood taken to test also.
Apart from that I’m feeling pretty good, nausea is definitely subsiding and my energy levels are improving. I’ve been cooking ( and eating ) a bit more and doing light housework 
Thank you for asking , I hope you’ve made a good recovery from your infection/ Covid ?
Take care and stay well , how’s your trial going ?
Best Wishes
Fiona x
Oh what a shame, having some sort of infection, @Fifimac. Unfortunately, it’s so common at your stage of recovery - they lurk in our systems, waiting to cause a little bit of havoc whilst our immune systems are developing. I hope whatever it is can be easily treated once identified. And hope you are not in too much discomfort. As I person who gets cystitis at least once a year, I feel your pain. 
But excellent news that both hospitals are pleased with your overall progress, Fiona. Great news! Really well done with the pottering around the house and cooking - I think it’s these activities which do most of the strengthening of legs, building of stamina and getting the appetite going again. Very positive that you’re managing all this and eating more - so pleased for you!
I’m over the infection now thanks, but unfortunately the drug trials team think it was most likely covid, which means I’m delayed in starting the trial yet again (they put the start off until after my holiday because the consultant was ill, which has proved unfortunate.) And the govt has decided not to supply Evusheld to the trial, and instead will now only offer a placebo if patients do not receive the new monoclonal antibody - so the delay and the possibility of no protective medicines at all in my system for many weeks during the winter mean I decided on Friday not to do it, as it could leave me vulnerable. I’ve therefore had my flu and covid jabs today, and am feeling quite achey, as I always do after the covid jab. But glad to have them.
It’s a real shame about the trial, but not surprising that we have this short-sighted decision. I imagine the decision to pull the Evusheld has meant lots of people feel too vulnerable for a period to participate now. That’s certainly the impression I got from the trials person I spoke to, But they thought I was making the sensible decision though, considering I’ve been suffering fatigue since my first bout of covid in Feb. I don’t need a triple whammy of covid and fatigue, with a delayed autumn vaccine and possibly only a placebo to protect me. Ah well. It wasn’t meant to be.
Have you started having your childhood vaccines and covid jabs yet, Fiona? Maybe that’s 6 months post-transplant? And are you off the cyclosporin? Reducing some of your other meds now? I hope so. The first month or so is hard work, just on the pill taking front. When I first saw the mountain of pills I had to take, I suddenly felt really like a patient, in a way that the chemo hadn’t made me feel. Probsbly because they seemed like a permanent fixture and had invaded my home, and made me feel like a sick person. That soon changes though! I’m on very few now. Hope you’re getting there too.
Have a lovely weekend, and really good to hear from you. Xx
Hi @Fullofbeans
Glad you’ve gotten over the Covid infection and I hope you don’t have the lingering feelings too long from recent injections 
I have my first Covid injection in October and I have been given a print out of when all the rest are.
Ciclosporan & Magnesium have started being reduced and I know what you mean about the mountain of tablets. It’s really unbelievable when you see them laid out in your own home !!!
Sorry to hear about your trial and the politics surrounding it all !
Like you said though , you’ve got to look after yourself , no point in taking risks with your health.
Enjoy the rest of your weekend and I hope you feel better soon. Lots of rain forecast for my area so there won’t be very much outdoor walking.
Best wishes
Fiona x
Heya Guys
Quick up - all went well on Monday - blood counts looking good and neutrophils are up to 2.5. Put on some weight with home cooking too!
So - Danae goes back into ward tomorrow for round 4 of chemo. Same dose as last time followed up with a fortnight of Midostaurin. We will also learn what the 12 months of targeted therapy will look like…
Scary and exciting. Hope everyone else is doing okay?
Sarah and Danae xxx
Hello @SarahMum and Danae
Such great news about the neutrophils and weight gain through home cooking. Wishing Danae well with her 4th course.
I have kept up with all your news, in particular the fantastic remission and having worked with Dr Richard Dillon (he did all the MRD monitoring for UCLH when I worked there), you are right in saying he is a whizz.
Sending the best if wishes to you both,
Gemma
Very good results, Danae and @SarahMum! Bet you’re both pleased to bits with that. Can’t beat a bit of home cooking once the appetite creeps back. That’ll stand you in good stead for the last round of chemo, Danae. Can you believe it’s the last round? Each one seems so long, it feels impossible they’ll ever finish - but here you are, just about to do the last.
Yes, I’ve no idea what that targeted therapy might be like - that’s where Danae and my paths diverge. But surely it’s got to be far easier than anything so far? I sincerely hope so.
Hope you both really enjoy the rest of your time at home together before the last admission. So nearly there. X
Hi to the Dynamic Duo, yes, nothing like Sarah’s home cooking, it sounds wonderful to me.
Good news about your blood counts Danae and your weight gain.
So back to the ward tomorrow for Round 4 and a you will both learn more about the way forward, yes, it must be very scary and exciting.
@GemmaBloodCancerUK words saying that Dr Dillon is a whizz must be so comforting.
How are you holding up @SarahMum, honestly?
Please keep the updates coming @SarahMum
Loads of virtual hugs to you both xxxxxxx
Hi @Erica @GemmaBloodCancerUK @SarahMum @Fullofbeans
Just keeping up with latest update on Danae’s treatment. I’m so happy that there’s a definite plan going forward, such a relief.
Also Dr Richard Dillon’s expert input aswell , how amazing is it that we are at different ends of the UK but this amazing man has been involved in our care.
He definitely sounds like “The Best” and I feel so lucky that my case was discussed with him.
I hope Danae is getting on ok back in hospital and that she’ll be home soon and getting back to enjoying her life.
You’ve both been through so much together but you’ve gotten through it
I don’t think until we sit and reflect , do we realise what we’ve gone through so far.
Thanks to each and everyone of you for your wise words throughout my journey so far.
Onwards & upwards for us all
PS… love Erica’s Dynamic Duo title for you
Much love
Fiona x