There is no reason to apologise for the radio silence @SarahMum you have both got so much going on medically, emotionally, physically and practically.
I think having tears in your eyes is so natural, the unknown is really scary. You are not only a carer but a loving mum with all those feelings, thoughts and emotions in there.
It must have been so lovely to have had Danae home.
Nintendo switch is a brilliant idea and to hear her laughing must be magical, even if it is at your expense !!.
You are both on an exhausting rollercoaster.
Thinking of you both loads and sending you both lots of love xxxxxx
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Awwww thanks so much @Fifimac
All the very best and loads of love and best wishes right back atcha. Do keep us posted on your treatment
Take good care
Sarah and Danae xx
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Hi @SarahMum
I just saw your message about Danae being home for a break before she started her last chemo.
Your message says a lot , the news is encouraging for you both. Iām so pleased to hear things went well with the bone marrow test.
Keep smiling and being as positive as you can beā:blush: weāre all here to bounce off 
Big hugs x x x
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Thanks so much @Erica
It feels so good to check in with you lovely peeps 
. Hope you are heading into the weekend with smiles and sunshine 
Take care and will keep you posted xx
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Hope all is well with you?
Are you able to provide any insight into my questions in my last post regarding Midostaurin please?
Thanks
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Hi @SarahMum, how are you doing? Pleased to hear that Danae has done well with her last round of treatment and is enjoying the Nintendo switch! Hope youāre doing okay- appreciate itās not an easy journey.
Our nurses arenāt working this weekend, but if itās okay with you, we can see next week if they can offer any information for you (@BloodCancerUK_Nurses).
You may have seen this already, but here is the Macmillan information page about Midostaurin, just in case itās useful at all.
Take good care of yourself, and do keep posting.
Best wishes,
Tanya.
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Thanks @TanyaBloodCancerUK I think things are going okay. Danae was told she could go home but is too anxious to do so at the moment as she is neutropenic again. The consultant was also a little apprehensive because of distance between home and hospital. That made us both nervous but we shall seeā¦
Another week of Midostaurin and she then has a break (ha ha) The Transplant coordinator came in yesterday and we now have possible transplant datesā¦24/08 or 07/09. This is dependent on the 9 out of 10 match proceeding. So, still lots of ifs and I am not gonna lie - I feel super scared for Danae. The stem cells will be frozen so they are here readyā¦
She has done so well in her second round. A nurse who retired after a lifetime working in the NHS came in on his last shift the other day to say farewell. He said that it had been an honour and pleasure to care for Danae and that she is an ambassador for young people who have cancer due to the calm and positive way she carries herself and has since being admitted. She shed a few tears when he left as it meant so much. I love my girl sooooooo much and am super proud of her 
So, junior doctor strikes start today so very quiet on the ward. We will see what consultant has to say todayā¦
Hope everyone else out there is doing okay? I read your messages out to Danae - she really likes hearing from you guys so thanks for that
Oh - and a new set of balloons in her room to hopefully make you all smile. Peppa is on the cocktails! 
lol
Sarah xx
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Wonderful to hear from you @SarahMum, Danae and a bit tipsy Peppa Pig, swaying about there.
I can understand Danae being a bit nervous about coming home at the moment.
The Transplant Coordinator really makes a transplant real doesnāt it and I always think the unknown is so scary.
I think what that retiring nurse said (which they did not have to) is such a compliment to Danae, I am nearly shedding tears here, she is a credit to you and you to her.
Both of you look after yourselves and none of that drinking that cocktail, which looks rather yummy to me.
Virtual hugs and please keep posting xxxx
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Dear @SarahMum
Thank you so much for the update and for the spectacular balloon picture, that made me smile.
I apologise I have only just replied, I was off for the majority of this week but I am here over the weekend if you should need to talk.
May I ask how Danae is tolerating the Midostaurin? On average, it is well tolerated and clinical trials have also revealed this along side itās efficacy.
In terms of the drug interacting with Ciprofloxacin, this is not something I am familiar with but I would expect that this must have been discussed with the microbiology team. I would suggest asking the Consultant of alternative antibiotic options as it doesnāt seem like you have reassurance there. Here is the link for:
Midostaurin | Interactions | BNF | NICE
I also found this booklet from our colleagues at Leukaemia Care that may be helpful: Midostaurin-for-Acute-Myeloid-Leukaemia-AML-Web-Version.pdf (leukaemiacare.org.uk)
Do let me know if I can be of any more help and I am here tomorrow from 10am-1pm if you need to chat through this.
Sending best wishes to you and Danae,
Gemma
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Hi @SarahMum
Iām so pleased to hear Danaeās got a 9/10 match - thatās incredible news. And possible transplant dates too. I realise at this moment that must fill you both with trepidation, but hopefully a few months afterwards, life will really be looking up.
And well done Danae for being so calm and positive! And well done to you too, @SarahMum - Iām sure your attitude, love, support and presence have contributed to that.
I hope Danae gets home for a bit soon. I live quite far from my hospitals (am near Landās End) so it was a concern with my consultants too, regarding how fast I could get to hospital if I needed too. I had my transplant at Derriford, so they arranged accommodation for me at a very nice lodge near the hospital for 2 weeks. This was for immediately after discharge following my transplant, so that I could attend thrice weekly appts for the first two weeks. Perhaps youāll get something like that to make life easier? Hope so.
Thinking of you both. Hope those pesky neutrophils are rising now. X
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Thanks so much for this information. You are always so super helpful and positive. Thanks
I will put an update below
Sarah xx
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Hi @Fullofbeans
Ahhh thanks so much for your response. I can appreciate worries re: your location but a beautiful area to live in - lucky you
I hope life is treating you well? I have just read your reply out to Danae who said, āAh, I like Fullofbeans - they are always really positiveā. . Thanks
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Hi All
Thanks for your messages. Unfortunately, we arenāt heading home yet. Danae has temperature 
and they think she has an infection as she was really constipated (a possible side effect of anti-sickness) They think she may have a tear internally so she is now being dosed up on morphine and will need to have a mri scan to check all is well internally.
Bless her - she finally got sooooo excited to go home and this has happened.
Hopefully things will improve over next day or 2 - she will then finish Midostaurin on Friday and we can then go home to start growing neutrophils.
I bought her a sunflower to cheer her up - meet Sally the Sunflower everyone
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Sunflowers are my favourite @SarahMum, they always seem to brighten up the darkest of days so am sure Sally will do this for Danae.
So sorry to hear that Danae has to stay in, but hopefully they can manage this event promptly for her. Worth getting it sorted now and give it healing time prior to transplant admission.
Sending best wishes to you both,
Gemma
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Poor Danae (and you) constipation is horrible and can be very painful. It sounds as if the hospital are on top of the situation.
You were both soooooo excited hoping she might be able to go homeā¦
It literally is a day at a time
As for Sally the Sunflower, she is absolutely so cute.
If you saw The Calendar Girls film or musical (story about Leukaemia) there were sunflowers popping up everywhere.
Look after yourselves and virtual hugs to Danae and yourself
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Ah, so sorry to hear this, @SarahMum. Iām sure youāve noticed in all the posts on this forum that unexpected ailments so often seem to get in the way of going home. It seems to be the First Law of Acute myeloid leukaemia (AML) Treatment: Thou shalt not go home on a first attempt! But at least the infection didnāt materialise just as you both got home - that would have been a bit soul destroying. Good that it was caught whilst there.
What a beautiful sunflower! So cheerful. Does Danae have one of the rooms with huge photographic murals on the wall? I had a surfy mural, and then in my next room, some dramatic granite cliffs, which made me feel closer to home. Yes, itās lovely down this way. If you both ever stray over the border once Danaeās better, and would like a local guide to eat a cream tea with, just give me a shout.
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I had no idea The Calendar Girls was about leukaemia, @Erica. And somehow, I have never got to watch it. I must put that right very soon.
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Ahhh thanks @Fullofbeans . Yes, her current room has a picture of a granite church somewhere up on Dartmoor.
We wouldnāt need to cross the border as weem Cornish maids . Top end of the county though. Will keep you posted
Thanks xx
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Thanks Erica
I did watch the calendar girls but have forgotten it was about leukaemia. I shall make plans to watch it again and no doubt will see it in a whole new light.
Catch up soon
Sarah
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too.
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