Oh @clareemmett a great big welcome, I am so glad that you have found us and I cannot imagine what you have all been going through as a family. You, of course, have your strong maternal feelings as well which really come through in your post.
I thank you also for raising the financial impact dilemma on you and your family. Finances are often not talked about.
I copy some links from the Blood Cancer UK and Macmillan Cancer Support websites for you, they are in no particular order.
The Blood Cancer UK support line is there for you on 0808 2080 888.
. Acute myeloid leukaemia - Caring for & supporting a loved one - Blood Cancer UK Online Community Forum
Blood cancer and young adults | Blood Cancer UK
Blood cancer: money and work | Blood Cancer UK
Blood cancer: mind and emotions | Blood Cancer UK
Practical support for carers | Blood Cancer UK
Emotional, financial and physical help for people with cancer | Macmillan Cancer Support
Supporting someone with cancer | Macmillan Cancer Support
I hope others on here will share their experiences.
Have you thought about asking your GP for any help for yourself. I found some CBT talking therapy really helped me, but it was not a quick fix and is not for everyone.
It must have been so scary for you when your daughter had 4 āgrand malā seizures let alone everything that has happened to your daughter.
Please do not get too wrapped up finding a parent of a young person with exactly the same diagnosis, see the tread above.
I think you will find that a parent/carer of a young person with any blood cancer will probably share very similar fears, feelings, thoughts, emotions and practicalities to you.
I know I have focused on supporting you and not on your daughter, but from what you have said it sounds as if she is getting the medical/rehabilitation treatment and has come a long way, give her time.
I realise you have a lot on your plate but perhaps try and spend a bit of attention on your son, spoil yourselves.
Please do keep posting and I know I have not answered your question, but perhaps you might all need supportā¦
Just seconding this @clareemmett . This is a lovely place and I have found posting here since my husband was diagnosed in October with Acute myeloid leukaemia (AML) a real blessing and outlet for me personally. I have āmy own threadā and I really enjoy posting updates and am so grateful to the posters who take time to listen to my ramblings.
Just wanted to send my love to you all. It really sounds like youāve done a stellar job of holding everything together for your children. Make sure youāre saving a moment or two each day for yourself. I donāt have the answers for you - I really wish you did but if you did take to posting regularly, then I look forward to following along on your journey. Wishing you all, all the best. 
Hello Erica,
Well I made it home after bone marrow transplant for 3 whole days and saw my kids who broke down and sobbed. Now Iām back in with raised infection markers 
So back to the mental struggle whilst also feeling rubbish. Taking it 12 hours at a time, get through a day and then get through a night
Oh @Jilly how wonderful to see your kids and they to see you for three days.
I have heard of several people having raised infection markers after a transplant, yes, I bet you are feeling rubbish on so many levels.
I think here is a safe space for you to be able to say what it is really like for you.
Be very kind to yourself and please do keep posting.
Oh @Jilly , how are you doing today? What day are you on now and are you still in hospital?
Thinking of you all
Hiya,
Sadly still in hospital. Iām day 30 post stem cell and feel ive gotten worse not better in here.
Frustrated but had a chat with the team yesterday. Todayās a new day so trying to reset and feel brighter. My appetite has gone - hospital food inedible and my mood is on the floor
Oh @Jilly I am so sorry to hear you are still in hospital and that you are feeling so low.
Trying to reset and feel brighter, perhaps is easier said than done especially if your appetite has gone and you are not getting the nutrients you need to build your strength up.
I bet you feel frustrated, but perhaps keep talking to your team really honestly.
look after and be ever so kind to yourself and please do keep posting.
@Jilly how are you doing? Hoping you are slowly continuing to improve.
Hiya,
Iām home so much better for my mood. Feeling weak but day at a time. Fingers crossed my bloods behave. Thanks for checking in. Hope all well with you and your husband
Hi @Jilly Yes, it sure is a day at a time and I reckon slow and steady wins the race.
I still have the habit of feeling better, then overdoing it and relapsing again.
Look after yourself
Thanks Erica, I had my first clinic appointment and one of the others waiting said I looked great for just over 6 weeks post transplant which was lovely. I certainly donāt feel it but at least the breathlessness is easing.
Will remember to keep being kind to myself and not expect too much too soon.
Thanks for this forum itās been a lifeline. Will keep posting
Jill
This is so great to hear. I bet the kids were pleased to see you? My husband was incredibly fatigued after getting home from transplant. He is on day 59 now and heās obviously still fatigued but he is more awake & able to do things in small chunks of time. Be kind to yourself and rest up.
Please do keep posting, looking forward to hearing your lovely progress
Thinking of you @Jilly , hope you are getting on OK this week!
Hi all,
Hope youāre well.
I just discovered this little gem of a forum and wanted to say thank you for your kind words and what a blessing to read from people who experience similar things.
I was diagnosed with Acute myeloid leukaemia (AML) on 29th Feb (at least there is no date to celebrate every year ;-)) and the mutation is a rare one apparently (MLLT3-KMT2A) so I was told straightaway I would need a transplant.
Being āyoung and fitā (30yo) I was also told I would be receiving the strongest treatments available and that unfortunately I would probably not be able to have kids (The hospital manage to organise for me to have a ovary removed just before the transplant to keep some hope of becoming a mum at some point).
I am now D+52 and I ve been home for a little bit more than a month. The transplant stay was my shortest one in the end even if it was probably the most challenging mentally.
It seems Iām doing ok but I am now getting into the mood of feeling anxious about potential relapse and I find it hard to not have a proper āprognosis catch upā before D100.
I have avoided googling anything related to Acute myeloid leukaemia (AML) during the whole treatment as I was afraid to find distressing info but I am so glad I just found this forum so I can finally meet people who experience similar things.
I think this could definitely help me from a mental point of view.
@Caroline30 @Jilly @Toadmum I hope you (your husband) are all ok 
Hi @Mmepages a great big welcome to posting on our community forum and I am struck with how much has happened to you this year.
Perhaps the shock of it all really hit you when you returned home after treatment.
Suddenly the mental sides come through when you are back in your own environment without the hospital care going on.
Perhaps donāt underestimate the fertility aspect either.
Congratulations for not Googling too.
However this is an online community forum and meeting up is not encouraged for everyoneās anonymity and privacy. Therefore people can share how it really is for them safely.
Some hospitals do have groups who meet or charities like Leukaemia Care have buddy schemes etc. Support and information - Leukaemia Care
I see you have already found people whose posts have been useful.
Anxiety about relapse is natural.
My thoughts and emotions have been all over the place since diagnosis.
In time I have found they come to a better balance as ālifeā just comes to a better balance.
Please do keep posting as I want to know how you are doing and be ever so kind to yourself
Hiya,
My infection markers are elevated again this week just as I hit the day 56 milestone 
trying to avoid admission by attending daily for iv antibiotics so 
.
Hope everyone is doing ok? Iām really struggling with anxiety, never had it before mostly related to the prospect of being admitted again. Every time the bloods improve I do more as team suggests and my CRP climbs. Itās frustrating. But thatās part of the process I guess.
Hi and welcome. Iāve really found this forum useful and easy to be open and honest with those who understand what youāve been through.
Iām 2 months post transplant for Acute myeloid leukaemia (AML) and although my 2 chemo cycles were long and tough. My transplant was also shorter stay initially but the hardest mentally and physically. Plus I readmitted after just 3 days for a further 2 weeks which was soul destroying.
Iām learning to be patient with myself have up and down days. I donāt think about relapse as the graft is still taking and such early days. But I know I get a bone marrow at 3 months so itāll be a thought come October.
Iām lucky I see my consultant at every clinic I go twice at a week. Iām based in Manchester for my care. Heās really good at explaining tests, allowing questions, discussing my Chimera result so far etc. my advice would be openly voice your concerns in your follow up or message your CNS / key worker so they know your worries about relapse. Iām finding lots of people seem to have anxiety post transplant about a lot of things, I think because youāre mentally drained at this point. Youāve given so much physically and emotionally and I personally found I am running on empty. Before it was all about getting remission then work up for transplant, but now itās just manage the effects and learn the new you.
Big hugs and keep talking on here itās a great space. Jill
Thanks @Jilly you worded everything so much better than I did.
Take it steady with the infection.
Yes, it really seems to be the emotional/mental side that really hits us and try to re-fill those goodness tanks.
Be very kind to yourself as well
hi - quick update from me as I really relate to fellow travellersā experiences at this stage (post transplant) I am day +87 post Stem cell transplant and find the biggest challenges are anxiety, lack of appetite food weight loss and consequent body image. on the plus side energy and ability to exercise have been gradually improving and my bloods have always behaved since I was discharged on day +13. touch wood. i am now just managing to walk 20k plus a week. itās very difficult to manage our expectations of ourselves i think and adjust to long term changes. xx
20k+ a week sounds brilliant to me @Gerard and your anxiety sounds very natural to me.
I reckon slow and steady wins the race, perhaps it is still early days, you and your body have gone through a lot medically, emotionally, physically and practically.
Look after yourself and please do keep posting.