Oh no. That’s so frustrating and NOT what any of us want, is it? And as you say, utterly stomach churning. I feel a level of anxiety as I have not had my 90 day chimerism or any bone marrow biopsies…… My consulatant is quite a maverick, which is what we like about him. He has broken several ‘rules’ to get me where I am today. But the downside is that he is relaxed about the chimerism and bone marrow tests! I think I may have to ask him outright to do them, as a reassurance……! He tells me I’m doing well and that he is happy with my blood count tests (although quite a few of them are still abnormal!).
Please do keep us all posted about how you are, the Azacitidine and Ventoclax did an amazing job getting me into complete remission, so I’m sure they’ll do the trick obliterating those remaining cancer cells. And the donor cells top-up will be ‘belt and braces’.
You are so right, all this is terribly overwhelming and the bumps in the road seem to be a ‘normal’ part of the journey. Stay positive as you work through this blip. I tell myself that Spring is coming and better days ARE ahead of us all xx
Thank you , we are on a unique journey and only other people going through a similar journey can understand how we feel. You’re so right , completely stomach churning.
I have a schedule from my transplant centre with all the dates of when I’d receive bone marrow tests, chimerism bloods etc.
It seems every area works slightly differently, but your Consultant does sound like he’s not overly concerned so that makes you feel better.
Were you in London area for your Transplant ?
My Transplant was done in Glasgow.
Anyway, you have a lovely Sunday and I hope you pick up soon. I’m visualising you getting the make up on and taking on the days.
Lovely to hear from you. Take care x x
Thanks. I live on the coast in Essex, but have had all my treatment and the transplant in London. It’s quite a hike to get there!
Just thinking about getting up (!) and reaching for the foundation cream……… 
Oh @Fifimac what a b****r, I bet it was a stomach churner when you were told.
I am so sure that some days feel overwhelming, that is natural, that rollercoaster of thoughts and feelings.
Really look after yourself and keep posting how you are.
Heya lovely people. Happy New Year! I am sorry to learn that there have been a few bumps in the road for you @Fifimac . I admire your honesty and positivity. I think we could all do with some of that for 2024…
All is good here. A slight blip for Danae a few days ago where she had scary heart palpitations and we ended up in A&E. They didn’t find anything and were very thorough. The bloods taken there showed positive figures and neutrophils were up to 2.5. I found it heartbreaking that she told me she doesn’t trust her body anymore. So, we have made a plan and are going to start swimming and gentle gym together. I hope this will help her realise that she can work towards getting stronger.
She has also ordered some new wigs so I think we could all take a leaf from your book @Ledgell and get dressed up and out there strutting our stuff 
lol
It is also Danae’s 21st birthday on the 22nd so I am planning a big one 
xx
Stay strong and smiling you special people
Love The DD xx
Hi Sarah & Danae
So nice to hear how you’re both doing !
I think it’s very understandable that Danae doesn’t trust her body , tell her she is definitely not alone in feeling this way. So much has happened over the past year that was totally out with her control physically. It makes it very real & scary at times.
I am so pleased that she is keeping well, anxiety can mimic many physical feelings let alone the mental side of anxiety.
You must feel anxious yourself Sarah as it’s heartbreaking watching your beautiful girl go through so much. You are both amazing. 
Can I ask about swimming ? I loved swimming, but I’m apprehensive to try it due to infection risk !
Do the Drs say it’s ok ?
Keep doing what you’re both doing and here’s to some amazing 21st celebrations !!!
Much love x x x
Welcome to the forum! I am so sorry to hear your daughter has been diagnosed with Acute Myeloid Leukemia. Your story is very similar to mine in that my daughter was 19 when she was diagnosed with Hodgkins Lymphoma. She had just finished her first year at university and during the summer holidays found out she had Lymphoma after discovering a lump on her neck. She, like your daughter, stayed at home for the year to begin chemotherapy treatment. Obviously to hear that your child has been given this diagnosis is heartbreaking and something you hope you never have to go through - for me I had already been through Lymphoma myself so my daughter knew what to expect. I went into practical mode and dealt with all of her medication, appointments etc. To be honest she dealt with everything amazingly and took everything in her stride. They really are more resilient than we give them credit for!! She was given the all clear in December 2015 and went back to University in September 2016 and completed years 2 and 3 ending up with a first class degree in 2018.
I completely agree with @erica that I would encourage her to keep in touch with the University and keep them up to date with what is going on. I remember my daughter made the decision very early to defer her place at university and effectively have a gap year. Do you know what your daughter’s treatment will involve and for how many sessions?
The year my daughter had off from University was a very special year and in a weird way it enabled us to have lots of Mum/daughter time (my husband was also there but he worked away at the time) and we planned lots of lovely days out and activities, depending on how she felt at the time.
We are now 8 years on now and my daughter feels like it hasn’t happened to her now. It always amazes me how resilient she was I hope your daughter is getting on ok now too!
PS Forgot to say, hubby is MUCH better now. Thank you 
Hi DD, yep, a happy. healthy peaceful 2024 to you both and all on our forum.
Yes, Danae, I can really understand you saying that you do not trust your body anymore.
Oh, new wigs sound exciting.
I have already had my birthday for this year, who wants to go out for a meal when you haven’t even finished our mini Colin the Caterpillars from Xmas.
Our son came round after he finished work and we had fish and chips from the chippy.
Perhaps as @Fifimac says it might be worth checking out swimming with Danae’s medics.
Have an absolutely brilliant, very special, birthday Danae and both of you get out there and strut your stuff…
Go for it you DD. xx
Hi All
Thanks for your lovely messages 
. Apologies we have been a bit quiet. We have been celebrating a VERY special 21st birthday 
.
Yes, my lovely daughter is now 21! We spent a night at a beautiful hotel in Falmouth and enjoyed a 2 hour hydrothermal spa experience. They upgraded our room and gave us complimentary cocktail vouchers. So, we have certainly celebrated in style. Check out the cake… The jelly was made with strawberry daiquiri 
Hope everyone is doing okay out there. We were at the hospital for clinic this week. Bloods looking good - neutrophils were a little low but they think that’s due to Midostaurin. Next BM biopsy is in 5th Feb and that will go for MRD test.
Take good care you lovely lot and will catch up soon…
DD xx
Happy 21st birthday Danae 
a very special time for you both
Wow, @SarahMum and Danae, you DD,
What a way to celebrate a 21st Danae.
My sister and her niece and family live in Falmouth, a beautiful part of the world.
The hotel sounds absolutely fabulous and a very fitting place to celebrate, especially with a very well deserved upgrade and complimentary cocktail vouchers.
I have never seen such a decadent cake.
Danae I am glad your bloods were looking good, I am surprised they were not pure champagne and chocolate cake.
Please do let us know how the 5th Feb goes.
Oh, I am still looking at that cake.
@SarahMum how is your work going?
You really are our DD, keep enjoying life and reporting back
Hi @Ledgell
How are you getting on ?
Hope all good , just a wee check in
Take care x x
Ah thank you 
I have been wondering how YOU are too! Hope you are starting to feel more reassured……. As we keep saying, this journey is full of twists.
I am doing well, apparently. Still so SO tired. Nothing really prepares you for this kind of fatigue, does it.
I’m now at Day +137, and off the CICLOSPORIN completely now. I only had my 90 day chimerism a couple of weeks ago, so I’m hoping for the results of that to be available when I go to my clinic appointment with the consultant tomorrow. Obviously I’m hoping for the result be 100% donor cells (was 88% at the 60-day test)………
I can’t honestly say that I’m feeling loads better, but we have to celebrate the small steps I guess. And the uncertainty that will remain for quite some time to come can play havoc with the emotions! I call it the ‘uncomfortable in-between of not knowing’.
We managed a short hotel break last week in Norfolk as it was my husband’s birthday - our first break away in the last year (apart from hospital ‘breaks’! It was great, but I’m struggling to recover my energy this week. Hey ho. At least we proved I can do it!!
Please do update us on your news- you pop into my mind quite often.
Xx
Glad to hear you got to Norfolk @Ledgell, but as you say it takes it’s toll which takes a while to recover from.
Yes, it’s a long and winding emotionally, psychological, physically and practical road,.so as you say celebrate the small steps.
Yes, fatigue can feel debilitating but over the years I have to know myself better and how I tick. My fatigue can be with stress, emotional, phycological, physical, medical or practical. It can come on immediately or up to 48hrs later.
I saw a lovely cardiologist today and more questions and tests than answers, but he did say I had the fitness of someone 20 yrs younger than I am, I’ll take that!!!
I will copy @Annie666 and @Suan1952 as they were asking how I was too, which I really appreciate all of you.
Be kind to yourselves.
I’m so glad you are coping Erica, it is small steps and I’m still at the beginning. I read some of the things on here and really feel for the people who are struggling. We at least have each others support which is so very helpful.
Hi @Suan1952 that is what our forum is all about !!
Well all I can say is thank you to everyone for their support and advice.
Hi @Ledgell
Glad to hear you are “ getting there “ it’s a long & bumpy road for sure.
Sorry to hear that you’re suffering with fatigue. I feel like some days I want to do more but eventually I have to give in and sit or lie down for a while.
Getting away for a short break must’ve been nice and introduced a bit of normality. Our lives have revolved around hospital stays or appointments for so long , it’s so good to get back into the real world.
I’m feeling not too bad, suffering a bit more with an anxious mind. I’m trying to get on top of that, but it’s not easy.
Hopefully you got good results at your recent appointment, look after yourself.
Best wishes x x
Good morning lovely people
A quick update. I was at work in a (Teams) meeting on Wednesday when I got a text from Danae. Her consultant had called to say her last MRD test had come back from Guy’s and was negative 
. I felt a bit silly because the tears just started rolling down my face (in the middle of a meeting!)
It is such wonderful news but it made me realise how we both ‘hold our breath’ and hope until we receive the result. I am not sure that will ever go away? Maybe a little further down the line?
We also had clinic appointment - consultant shared Danae’s bloods are normal. That put a big smile on our faces too So, another clinic appointment in a month and biopsy in 3 months.
So my gorgeous girl now has plans to head up to visit her uni friends and attend a Spring ball! She is then heading off to Spain for a trip with her cocktail society friends. It was her previous trip a year ago where her cancer journey started. I remember her calling me from Portugal saying she felt really rough and me telling her to take things easy and get an early night. Wow - what a year? Again I have tears - I have been feeling so emotional of late. I then feel bad because I know that Danae is getting an opportunity denied to others. I am delighted for her positive news and can only hope long may it continue…
Apologies, I had to get that out and this forum continues to be a safe space where I feel I can do so without judgement.
I hope that everyone is doing okay? We think and talk of our forum friends often and I still read out responses to Danae.
So continue to be kind to yourselves and loved ones. Keep posting and sharing.
Sending love and positive vibes
Sarah xx