Hi my 23 year old daughter has recently been diagnosed with Acute myeloid leukaemia (AML) and started chemo today.
She has a learning disability but understands what is happening. She is being so brave but I am terrified.
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Oh @SophieMae a great big welcome to our forum family.
I am not surprised that you are terrified for so many reasons.
The biggest being, I believe, is that you are a mum and all that special bond that brings.
Also all that scary language that I have never learnt.
The unknown and powerlessness are really horrible too.
If you put Acute myeloid leukaemia (AML) in the search bar at the top of the page you can search Acute myeloid leukaemia (AML) threads. I attach just one, rather a long one actually.
Acute myeloid leukaemia - Caring for & supporting a loved one - Blood Cancer UK Online Community Forum
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Perhaps just try to take it a day at a time, I know it is not easy, but it is certainly all I can cope with.
Treatment might mean that your daughter feels better one day and not so good the next, and all you can be is beside her so she can be honest with you how she is really thinking and feeling, I reckon it is your greatest gift.
Perhaps you will need support for you to say how it really is for you and I have found this is the place for me.
If you have family and friends that you can talk to them, all the better.
The hospital might have a group, a Macmillan or Maggies Centre (or equiv), via your GP etc.
The hardest one for me is asking for and accepting help.
Please try and look after yourself as well as you obviously look after your daughter.
Please keep posting I look forward to hearing more about you.
Be ever so kind and really look after yourself
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Hi Erica. Thank you for replying to me and for your words of encouragement and support. Day Sophie is feeling much better and even managed to have a few bites to eat!
The doctor has said the chemo will have helped her to feel better today but day 7 could be tough. Iâm going with the mindset of taking each day as it comes and take the good days as they come. 
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Hi @SophieMae.
Iâm glad your daughters day was ok today. I can imagine you must be so anxious about everything and knowing she may feel poorly in a few days is hard.
I think in situations like this, taking each day/morning/hour as it comes is definitely the best way, otherwise things become even more overwhelming than they are already.
How are you doing today? Have you got
People around who can support you through this as well?
I really hope you find value in the forum. So many will understand and I hope you donât feel so alone.
Please keep us updated on how you both are.
Youâll be in my thoughts X
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@SarahMum has documented her journey with her daughter here. Hopefully she will join in the conversation soon.
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Itâs natural to be terrified as a mum we want to protect our kids from everything.
Thatâs good that she understands whatâs happening
It is taking one day at a time and asking questions if you donât understand something
Sounds like your daughter has a loving mum and you will get through those days that seem harder than the rest.
Do the things you love together on the good days and cuddle up on the not so good and enjoy whatever it is you enjoy
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A huge big welcome & hug from me. Iâm really so sorry that your daughter is having to go through this.
My husband had Acute myeloid leukaemia (AML) , he is doing great so far. Bravery doesnât even come close to explaining what patients and their families who experience Acute myeloid leukaemia (AML) deal with. It is impossible to comprehend until you navigate it.
Ask for help and support - from your family, friends, on here but especially from the medical team. What help is there for your daughter? Extra counselling? Maggies & Macmillan were fabulous for us, she will have clinical nurse specialists who will be able to âhand holdâ over the next few months,
Happy to answer any questions if you have them but just want to send you a big hug. Things do go back to normal, and I remember thinking how ridiculous that thought was in the thick of things. Be patient and kind to yourself especially as a care giver and parent.
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Thanks everyone for all your kind words of support an encouragement.
Toadmum has your husband made a full recovery? I do hope do.
Sophie seems to be doing ok so far 
I donât feel well today, sore throat, achy so havenât gone over to the hospital for obvious reasons. Sophie was cross with me as she doesnât want to be on her âownâ Iâve been with her 12 hrs a day every day so far so this is really hard.
Her dad had this bug last week so couldnât visit but I was there. He canât get to her till tomorrow night after work. ( we live almost 2 hrs away from the hospital) Iâm staying in hospital charity accommodation for now.
This is so tough. I feel so guilty not being with her. Family and friends all work during the day.
The Teenage cancer trust nurse is on site and popping in when she can but the ward staff are too busy to sit with her.
I just want this nightmare to be over for her.
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Heâs made a full recovery and had a transplant as part of this. He is still under care and monitoring from his medical team but weâre about 6 weeks apart from hospital checks now whereas for a good while he was either living in hospital or visiting daily. It might be too overwhelming for you but you will be able to find my thread on here which I created not long after he was initially diagnosed.
I empathise completely with you about wanting the nightmare to be over. I think any cancer diagnosis would be a huge shock but the intensity of Acute myeloid leukaemia (AML) from a treatment perspective makes for a huge shock.
Honestly, it takes time to acclimatise - both for patients and for us as caregivers.
Is there some things you could do to make Sophie comfortable when you are not there? Something to keep her hands / mind busy? When my husband felt well enough, he liked crossword puzzles but he also had a little handheld gaming console and TV. He watched countless series / films etc and sometimes all I needed to do was sit with him for a bit and remind him about that great series or film and then heâd be busy for a while.
Would she craft? Journal? Read magazines? Listen to audio books or the radio?
It is incredible that youâve been there for 12 hours a day, and I canât imagine how difficult it is to try to support your child through this but itâs really important to fill your own cup too. Have you thought about how you can do this? I found when
I didnât, Iâd be poorly or I couldnât think straight or found everything super overwhelming. You might notice these points in my journal thread on here.
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I donât mean book a holiday or spa break or something that renders you unavailable but are you hydrating? Eating properly? Listening to something you enjoy on the drive or walk over? Are you talking to people? This one is so important for me - can be on here, friends, family, random people in the waiting room, doctors, support charities or a counsellor?
I found it overwhelming and impossible at points to focus on myself. I felt selfish but it was the best thing in the long run for me and the kids and for my husband.
Unfortunately Acute myeloid leukaemia (AML) when treated properly is a marathon not a sprint. For my husband he had multiple rounds of chemo & a transplant and you need the coping mechanisms to get through this.
Sometimes I / we had a great day, and sometimes I felt I was getting through a minute at a time.
Sorry there was so much info above, I hope even one bit helps you. Just know we are thinking of you all x
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Thank you. Yes itâs so tough. How long has your husband been in remission for now? Iâm so happy he is well again. I have just had a telephone conversation with Sophieâs consultant while he was with her as she doesnât understand all the medical stuff. He said she is in the intermediate risk group. She has NPM1 & FIT3. He talked about possibly needing a transplant but we wonât know the longer term prognosis u til after the 2nd round of chemo.
Just FaceTimed Sophie, bless her she just wants her mum with her.
I am trying to stay positive but itâs so hard.
I was hoping to go home for a night at the weekend while dad is here but she doesnât want me to leave.
Iâm scared Iâll burn out completely.
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He was diagnosed in October 23, and was in remission from December 23. He had to keep having chemo to keep him in remission whilst he got to transplant. His mutations were FLT 3 and NUP98 so a high risk prognosis. His FLT3 mutation was gone within the first round though using midostaurin. He wasnât given an option about having a transplant, they told him almost immediately that he would need it.
He has biopsies every 3 months still to check for any mutations or presence in his blood.
I donât think itâs ever possible to stay fully positive, especially not when there is what feels like a mountain to climb. The main thing is to feel the feelings, and acknowledge them and let them flow.
You canât control a huge portion of this journey, but you can control how you react and care for yourself and how you approach small chunks of time which might reduce the overwhelming feelings and fears of burn out.
One other thought - can you ask for help? can you pay for help eg a cleaner or someone to mow the grass / walk the dog insert chore. If people offer help, take it and be specific with what you need.
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Oh @SophieMae you obviously have such good insight into yourself.
Perhaps only you know how to talk to your daughter, of course she would like you to be with her 24/7, but explain to her that you will be with her as much as you can, but if you do not look after yourself too you will not be of any use to her at all.
Be ever so kind to yourself, you are being emotionally torn in two,
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Hi @SophieMae
I am sorry to learn the news about your daughter but I am thankful that you have found this wonderful and supportive forum 
I think @Erica has shared my posts. I can also see that some of the super supportive crew on here have also added posts/support. Everyone on this forum are amazing and a super source of support.
My daughter was diagnosed in April 2023 with Acute myeloid leukaemia (AML). She was 20 years old at time of diagnosis. She had 2 nasty genetic mutations which meant she was on course for a stem cell transplant. She is mixed heritage so at that point no match was found for her in the world. She had seven rounds of chemotherapy.
We were then thrown an unexpected but very positive curveball. She was in remission. No one was expecting that (to include her consultant) She then went on 12 months of targeted (tablet) therapy (Midostaurin) This finished in November 2024. She remains in remission and continues to have 3 x monthly bone marrow biopsies to ensure nothing changes.
When I write the âsummaryâ above it no way touches upon all that treatment involves and how your daughter and you will feel along the way. Every cancer story is and will be different.
What have I learnt? To be kind to yourself. You cannot be there for your daughter unless you take good care of yourself too. Try not to think too far ahead- sometimes it is best to take each hour as it comes. Write thoughts/questions down as you think of them - that way, they are out of your head and ready to ask your daughterâs team.
Seek support from reliable sources and keep posting on here when you have time. I can TRULY say all the wonderful people who belong to this forum kept me going in the darkest times 
If I can help in any way then please just shout.
Sending you and your daughter love and positivity
Sarah
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Hi Sarah,
Thank you for getting in touch. It was so heartwarming to read your story about your amazing daughter also to hear she is in remission! We are beginning to get an insight into how chemo can make you feel. Sophie has hit the 7 day chemo wall today (as I like to refer it to)! The consultant said sheâd dip on day 7 and my word she has. Sheâs been quite poorly today which scared me a little.
She also spiked a temp which certainly didnât help so more blood cultures.
Shes lost 5 kg in 3 weeks and only eaten a few spoons of yoghurt today. Hoping tomorrow will be a better day.
I honestly donât know how she does this. She copes so well all things considered x
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Heya @SophieMae
It is a tough treatment schedule thatâs for sure. I remember days when Danae would eat 1 cracker. Does she have a fridge in her room? I would buy Danae âkidâs snacksâ that she used to have at primary school - yoghurt Choobs, munch bunch yoghurts etc Anything to try and get her to eat.
The housekeeping team would also have a supply of ice pops on hand that they could leave in freezer compartment.
The Mum guilt is huge huh? I did speak to Danae and we came to an agreement about me staying at the hospital. I would stay on the nights before consultant rounds as that meant I could be there to support and ask questions of the team. I also bought a camp bed that the nursing team let me leave in her room (it wasnât the best but better than the slidey plastic chair?!)
I also bought food flasks and would bring food from home. That made me feel better about leaving her as I was still doing something to show support and love but had some space. It is super important that you look after you in all of this. Some days that can prove harder than others.
Take things easy and keep posting when you have some time.
Thinking of you and sending positive thoughts
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Morning everyone, not posted for a few weeks. Been a rollercoaster ride for sure! Sophie is currently waiting to go home for a weeks break after her first round of chemo but her neutrophils are slow to rise so itâs looking like sheâll be in for a few more days yet. We had lots of tears yesterday as on Saturday we were told sheâd be able to go home tues/weds. Then yesterday told it will be next week.
I wish they hadnât dais a day as she hangs onto things sheâs told.
Has anyone else experienced a slow rise in neutrophils? We were told itâs probably due to the two episodes of neutropenic sepsis Soph had making it slower?
Weâve been in hospital for 7 weeks now and desperate for some positive news!
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Hi @SophieMae I often do not think that some medical people realise how we hang on every word, especially really good or bad news.
Soph has done absolutely brilliantly in hospital going through two episodes of neutropenic sepsis and so have you.
Seven weeks must feel like a lifetime for you both.
You are another real team.
How are you doing and feeling @SophieMae?
Be very kind and look after yourselves.
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Hi Erica, thanks for your message. Yeah I donât think medics realise do they!
The ward have said that we can have our puppy on the ward on Sunday so Sophs looking forward to that!
Hope youâre keeping well? X
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Hi @SophieMae,
I am so glad to hear Sophie has been through the first chemo and sheâs on her way home.
My first stay lasted 7 weeks too and indeed it feels like an eternity. And I was also really slow to recover neutrophils 
(longer than expected for my 3 rounds of chemo) - I lived the same experience of being told I would go home on a Friday to only be released the following one in the end.
It was upsetting but I remember trying to be positive and think that I prefered to be with low neutrophils in my hospital room than at home full of anxiety of catching something. In the end they did let me go home with only 1.1 instead of 1.5 I think because I didnât need any treatment and was âwellâ and it was already an extra week vs the first date planned. I just needed to be careful and it went well, didnât have to go back for 10 days.
I wish Sophie, you and your family the best days home and just a little bit more patience until she can pack her bags - it is in her best interest to wait
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