Hello @SarahMum
It is so good that you have both been open and honest with each other about your concerns. All that you are feeling is totally normal, the completion of treatment is often a time when more support and reassurance is needed for both patients and their loved ones.
I would suggest to keep talking, use all the resources you have and don’t forget if you need a chat, I am here also.
Take good care
Gemma
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Ahhh thank you @Toadmum 
. I hear you on the asking questions front 
. I also need to remember that she is a grown adult and not my little girl anymore (although I think our children will always be our little ones 
)
Thanks also for the additional treatment info.
Hope all goes well for you and your husband
Sarah
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Thanks @Erica 
. You do such an amazing job of caring for all of us on this forum too xx
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Thank you so much @GemmaBloodCancerUK Your advice and support is always much appreciated
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Hi all, hope you’re all doing ok. I just wanted to chime in and say I totally relate to the fear of stopping treatment @SarahMum It was a different situation, but right up until the end with dad I was trying to get him to take his tablets. Even though I really knew it didn’t really matter any more and that he was in his last days. But there’s comfort in know something active is being done to keep the cancer away. And not having that is scary. So I think your reaction is totally normal.
Danae’s dissertation topic sounds really interesting. I’ve worked in fundraising and marketing in the charity sector for 13 years and we talk so much about the importance of language. There’s also a significant move within the sector to ensure messaging and language is crafted with those with lived experience of the cause/issue. So her dissertation will be really on point for that too. I don’t know what she wants to do after uni, but if it’s anything vaguely related to what I do then I’d be more than happy to have a chat with her.
Wishing everyone a lovely event free week!
Ilona
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Also @Erica asked in another thread how I was, but if felt more appropriate to reply here.
We are doing ok. It was what would have been mum and dad’s 57th wedding anniversary the other day, which was hard. But we had a meeting with the accountant to bring us down to earth! He’s lovely though and has known the family for years.
It’s mum’s birthday on 5th November, so I’m taking her for a spa day on the 4th. Not really something we usually do…I was much closer to my dad than mum…but I think it will be nice.
Otherwise we’re starting to get back to normal now. The “Dadmin” as I’ve called it is getting more manageable. I’m hoping my partner and I will be able to move back into our house in a couple of weeks, although it very much still looks like a building site when I went yesterday. We’ve booked 5 days in Berlin in February for my birthday, so looking forward to that too.
Oh and mum and I have tickets for the Blood Cancer UK carol service at St Pauls Cathedral on 17th December. Mum, dad and I always went to see a show around Christmas time, so this felt like a fitting one as the first one without him.
But the grief comes up at the strangest of times. We were watching the Korean zombie horror film Train to Busan the other day and there’s a bit where a father cries…I had never seen my dad cry until his final few months. So that set me off. I miss him terribly and still can’t quite believe he’s gone. But I’ve had such good support, I’m very grateful for all the friends (and strangers) who have helped.
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Oh @Ilona what a lot you have going on and most an emotional rollercoaster.
Thanks so much for posting so honestly.
I have heard that the Blood Cancer UK carol concert is a brilliant evening.
Look after and be very kind to yourselves and please do keep posting
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Hello everyone
Thank you all for your wise words and support. Here I am - a lot calmer because…. I have my curly girly home for a week 
All is well at the moment. I went up to be with Danae for her bone marrow biopsy at Warwick. I stayed overnight and we had breakfast together. I then headed home on the train. Later that evening, I received a voice message that Danae was in A&E. She had developed a fever so went through protocol and had to go to A&E. They were reassuringly thorough and ran all the tests (bloods, xray, urine) All (thankfully) clear so they let her go back to uni digs. I felt awful because I was so far away but she was sensible and followed all the medical advice.
So, this week is a reading week at uni. So my gorgeous girl is home for a week:smiley:. She is resting up and I am feeding her favourite meals. I am off from work on Thursday and Friday so we shall head out to the coast for some Vitamin Sea 
.
We await the MRD results from biopsy but for now, will enjoy time together making special memories
Tomorrow is her last dose of Midostaurin (after a year). We are going out to dinner to celebrate her taking her last dose. Am I still worried and frightened? Yes. But we need to live for now and enjoy every day.
We hope that you guys are all doing okay out there. May life treat you kindly.
Thinking of you all and sending love and positive energy.
The DD xx
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Hi @SarahMum and Danae, a few ups and downs, but Danae was so sensible and knew exactly what to do, but probably really missed her @SarahMum as well.
I cannot imagine what you went through @SarahMum though, suddenly Warwick and your curly girl must have felt millions of miles away.
Perhaps a learning process for both of you.
Enjoy every minute of this reading week and ‘Vitamin Sea’ sounds wonderful to me.
Enjoy your dinner I will raise my hot chocolate to you both.
Perhaps, in my experience ending treatment (or whatever) does also bring up a mixture of emotions, some logical some not.
You are my DD either together or separately.
Yes, live every day and please do keep posting.
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Awww thanks Lovely @Erica . We have had a lovely evening. Went out for a meal and Danae took her last two Midostaurin tablets. We both shed a few tears 
but I guess it is a HUGE moment.
I bought her a balloon, flowers and some Prosecco to mark the occasion. As always, Danae asked after all the ‘regulars’ who post on here and check in. She loved the thought of you raising your hot chocolate in a cheers @Erica and raised her Aperol spritz in your honour
A positive and memorable evening filled with love xx
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Oh what a very special time you both had @SarahMum and Danae.
Thanks for the piccies.
Yes, a huge moment for you both.
My hot chocolate tasted extra special last night thinking of you two very special people…
You are both DD Stars. xx
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Hello special people
I hope everyone is doing okay. All great here 
. Danae received a call from her consultant this afternoon to share that her last MRD result is negative 
I still find my emotions are all over the place. I am soooooooo delighted and thankful for this news 
.
Aside from all of this, yesterday I FaceTimed Danae and it touched my heart 
. I could see how happy and healthy she looked and sounded.
I love my girl so much. All of my being is invested in her continuing a ‘normal’ and happy life.
I am not sure this update makes a huge amount of sense (sorry!) . But this evening I am thankful for that result and my gorgeous daughter.
Love and thoughts to everyone out there xx
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Oh @SarahMum everything you say makes absolute sense to me.
You have been through such traumatic and brilliant times together, you are so close and you also have your maternal feelings in the mix as well.
I reckon my thoughts and emotions have been on high alert, all over the place and often conflicting since my diagnosis 20 yrs ago.
I never thought about them before then, the were just there in the background.
My son was 51yrs old yesterday and came round. He awaits having 2 impacted wisdom teeth out in hospital and is in pain. I just want to take that pain away and chase the hospital but I know it is up to him.
Yes, loads of love and hugs to you, be very kind to yourself
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This is fantastic news!! So happy to hear it, for both of you. x
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So pleased!! Your updates make total sense! Wishing the absolute best for Danae after everything she went through, and the same for you too. Sounds like it gives you purpose too, are you taking care of yourself too? Lots of love xx 
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Hello there @SarahMum
This news made my Saturday shift far brighter 
. What great news to hear of Danae’s MRD result and also that she is doing so well 
Your post makes complete sense and as always you and Danae make a wonderful team.
Take good care and best wishes to you both,
Gemma
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Hi, new to this forum, the mum of a teenage daughter who was diagnosed with Acute Lymphoblastic Leukemia, completely out of the blue, in Sept 2023, and has had the roughest of rides with chemotherapy which caused seizures and a coma, she lost her mobility, was bed bound for months, spent a year in hospital, is now home and learning to walk again, on maintenance chemo. Its just been dreadful, and I really could do with some success stories regarding teenagers who’ve been through leukemia and gone on to live happy lives
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Hi @Charlotte234 I have responded to your other post xx
Hi Lovely People
I hope everyone has made it through the festive season okay? Danae has been home for Xmas and I have LOVED every second! . The DD spending time together and making special memories 
I also thought I would share something exciting that happened yesterday. I hope it will raise a smile with you all…
I headed out on a bike ride yesterday (along the Camel Trail) annd I bumped into Gordon Ramsey! Lol 
. He was out with his personal trainer on a run. He stopped at a coffee shop so I seized the opportunity and asked him for a photo. I told him about Danae and he was SOOO lovely. He recorded a video message for her (which I will try and upload on here). She was made up when I got home and showed it to her. She was screaming 
lol . It made my day - thanks Gordon - super guy
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