I bet that will really cheer her up then 
gir home next week X
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Hi @SophieMae
Good to hear from you with an update. My daughter was in for 7 weeks after first round. I remember asking the doctors every day if there was any sign of neutrophils. It was devastating to be told no and then it happened. I remember us bouncing around the room when the bloods showed 0.1!
I got so concerned about my daughterâs mental health/wellbeing that I negotiated with the team a short trip outside whilst waiting to go home. Perhaps you could do the same? We got a wheelchair and headed out at the weekend when the hospital was quieter. We went to Costa for a treat and sat in hospital garden. It felt like the best! It also gave Danae some confidence that she would be okay in the âoutsideâ world again.
Anyway, not long nowâŚ. Take good care of yourselves and we will look forward to an update once you are home (if you have time 
)
Sending every good wish 
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Oh we have just had the best news!!! Neuts are 0.85 today and weâve been told Soph can go home later today after her bone marrow aspirate!!!
We are so happy!
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Oh @SophieMae that is the best news.
Enjoy yourselves.
Take it steady, both of you
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Thatâs amazing news!!! So pleased for you both X
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Hi everyone, sorry Iâve not posted in so long. Just wanted to say hi and I hope everyone is doing ok?
Sophie has now had 3 rounds of chemo and although she was in remission after the first, the 2nd bone marrow biopsy showed NPM1 still present.
She is now waiting for a Stem cell transplant. We see the team next Monday at QEHB to discuss.
Sophie is very up and down emotionally, I still donât think she fully understands it all. She keeps saying things like âI donât want any of thisâ âI wish it would all just go awayâ
She has been home 3 weeks now since round 3 and doing well health wise.
Blood counts have been slow to rise this time which has been frustrating for her as weâve had to be really careful about what she can do/where she can go etc.
we have tried to do some nice things and keep as upbeat as possible. I feel like Iâm walking on egg shells sometimes but I totally get how frustrated she gets.
All in all Sophie continues to be so amazing and strong. Weâre all so proud of her x
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Oh @SophieMae so glad that you have posted.
It must be so hard for you both.
I think Sophie is acting so naturally and coped with being in hospital and having treatment so well.
I know you have this special bond with Sophie and it must be so hard for you not being able to make it better for her.
I find I can be really honest on here and say how it really is for me, please do use us.
Be very kind to yourselves and perhaps you are both being amazing and strong
Please do keep posting how you both are doing.
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Hi @SophieMae.
Itâs really good to hear from you and to get an update.
It must be very hard for both of you and I understand the up and down emotions. Itâs so great that you are there for her and keeping upbeat. However, it must be hard to watch her going through this so Iâm glad you can use the forum to talk through it all.
Please keep us updated on how the stem cell consultation goes and take good care of yourself x
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Hi @SophieMae
Thanks for the update. I was thinking about you guys the other day so good to hear from you
I totally understand how you both are feeling. Maybe try and focus and say out loud the positives. How well things are going health wise for now. How this will help when the next stage arrives.
Do look after yourselves and keep us updated when you can
Sarah
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Hi all, hope everyone is doing ok!
Just a little update and I guess a little reassurance if possible?
Sophie was discharged yesterday at day plus 13 following her Stem cell transplant. She did amazingly well. A little infection after the ATG but she soon got over that!
Weâre all amazed and a little surprised how well sheâs doing after we were told how ill she might get. So grateful she wasnât.
It was late when we got home last night so only read the discharge letter properly this morning.
I noticed yesterdayâs wcc was 27.6 which has freaked me out a bit. It was 26 at diagnosis!
No one commented on it yesterday so Iâm assuming itâs not a problem? Just wondered if anyone else has had a high wcc post transplant?
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Hello there @SophieMae
It is really good to hear that Sophie did so well during her transplant admission, it must be so lovely to have her home.
It is understandable why you were alarmed about the white count being higher than the normal parameters but as you said the medical team will have considered this reading prior to discharge.
Post the transplant, there can be reasons why the white count is raised, but it is best to check with the transplant team particularly as you are concerned. Sophieâs body will be having an immune response to the transplant which is normal and can show with a higher total white count.
The white blood cell count can also be affected when the patient is given a growth factor injection which is administered to stimulate the white count in order to support count recovery and reduce risks of infection whilst vulnerable.
If you would like to talk this through please do get in touch Blood cancer information and support by phone and email | Blood Cancer UK and I am sure you get some reassurance from the transplant team.
Best wishes and I hope Sophieâs recovery continues to go well.
Gemma
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Good morning, Iâve not been on here for a while. Sophie was doing so well post transplant, bloods recovered nicely etc and got the old Sophie back. Then last week we were told her latest BM biopsy showed 15% leukemia cells in her marrow. We are devastated as we really thought sheâd beaten it.
Sheâs now started Gilteritinib targeted therapy with the hopes it works. The consultant said itâs 50% success rate which scares me to death!
Has anyone else had this?
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Hi @SophieMae
Itâs good to hear from you and get an update. However, I can only imagine how hard that news must have been for you all.
Itâs good that youâre back on the forum and I hope others will be able to share their experiences with you.
remember, the support line is there for you if you need it. How is Sophie doing?
Nichola X
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Thanks for replying Nichola, Sophie is a bit up and down emotionally as we all are.
She canât understand how itâs still there after four cycles of chemo and transplant and to be honest we are all confused, scared and dreading the future. 
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Oh. @SophieMae I hate statistics like this, I am not surprised that you are both feeling devastated and scared to death.
Perhaps just use us on here to say how it really feels for you and take it a day at a time.
Yes, as @Nichola75 says do ring the Blood Cancer UK support line on 0808 2080 888 for a chat if you need to, they are lovely
Heya @SophieMae
I bet you are all feeling a little scared. Some advice someone gave on here was to flip the data - so concentrate on the 50% positive rather than negative. Hard to do at times but I found it definitely helps.
I agree with the suggestion of speaking to the @BloodCancerUK-SupportTeam . I spoke with @GemmaBloodCancerUK at a point where I was so low and frightened for my daughter. Gemma was super kind and supportive 
It helped me because it was someone who knew stuff but was distanced from the immediate situation (if that makes sense)
Do look after yourselves and keep posting when you have chance.
Sending positive thoughts 
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How are you doing @SophieMae ?
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Hey, Sophieâs having some side effects either from the Gilteritinib or coming off Cyclosporine? aching legs, pain in hands and feet also really dry skin on her face and itâs very blotchy. I called the Bone marrow transplant nurse yesterday and theyâve sent some steroid cream for her face.
We see the consultant tomorrow so will see what he says.
Itâs so scary as she acting like she did at the beginning just before she got diagnosed.
Iâm hoping itâs just the meds but part of me is dreading tomorrowâs bloods.
Thanks for asking xx
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Hi @SophieMae yes, I am like you it is a real trigger when I see or feel just like I did when I was first diagnosed, I think it is very natural.
Fingers and toes crossed for you both and please do let us know how you get on.
Be very kind to yourselves
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It must be very hard when it feels like and that anxious feeling around appointment times is horrible!
Iâm hoping that your appointment goes well tomorrow and will be thinking of you both. Please keep us updated when you feel ready.
Sending lots of love X
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