Acute myeloid leukaemia

Hi All. I am Mum to my beautiful 20 year old daughter, Danae. She was diagnosed with Acute myeloid leukaemia (AML) last week. She is in her second year at university but is now at home with me. We are awaiting the start of her chemotherapy treatment (possibly the end of this week) Any positive thoughts/advice welcome :hugs:

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Hi @SarahMum a great big welcome to our forum and I expect you are both in complete shock and fear and it is certainly not in your life plans.
I have a different blood cancer and I was diagnosed 19 yrs ago.
I am so glad that you have found us, but perhaps try and not to google too much.
The Blood Cancer UK website has a lot of information and if you would like to talk to someone the Blood Cancer UK support line is there for you both on 0808 888 2080.
You are both now part of our forum family and I hope others will be able to share their experiences.
Even though a lot of us might have different blood cancers many of us share the same feelings, questions and practicalities.
Perhaps encourage Danae to keep talking to her University so they know what is going on.
Please keep posting and in the meantime (the waiting is horrible) please look after and be kind to yourselves

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Hi @Erica
Thank you so much for your response and top tips. We are staying away from Google and have a plan to take each step as it comes…. Tomorrow we go to the hospital for more blood tests and to put the line in. They will then tell us when D will start her first round of chemotherapy. I think we both want to get going as the waiting is stressful. We are also trying to do normal things. Yesterday we went for a walk on the beach and today we are going to bake a chocolate cake :blush:

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Hi @SarahMum

Sorry to hear about your daughter’s diagnosis.

I have just put up a post Is there life after Acute Myeloid Leukaemia which will hopefully help.

The treatment is tough going but everyone responds differently and the only advice I can give is take everything day as it comes and stay positive.

Wishing you daughter a speedy recovery x

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Hi @SarahMum

I’m so, so sorry your daughter has been diagnosed with Acute Myeloid Leukaemia, and in her youth too, when she should be enjoying herself at uni - you must be terrified and devastated, as must she. I wish you weren’t experiencing this, but as you are - welcome to this forum, and please ask for help and support whenever either of you need it. At any time.

I was diagnosed with Acute Myeloid Leukaemia in Aug '20 at the age of 50, so I understand how scary it all is, and how nasty the chemo can be.

But I can see some great positives here. Your daughter is young, so her chances of a full recovery are at their highest. I presume also that as she is young and at uni, her general health must be pretty good too? Youth and good health make a big difference.

And she has you for lots of love and support. That’s so important. You can see for example that she eats her very favourite treats when her appetite is struggling, or watches her favourite comfort movie when she’s down. You can make a huge difference as her mum. Not everyone has that sort of support and it will be a factor in the length of her recovery.

And she’s at uni! She’s had a glimpse of all the fantastic opportunities life can offer her, and the freedom, and the friendships. I’m pretty certain most young people will be raring to get back to that, and will be highly motivated to work on their recovery to speed up a return to their normal life. This might include really trying on the eating front, if weight loss has become an issue, or working hard to keep moving if muscle loss occurs.

Also, perhaps being at uni will help her to get over the trauma faster when she’s better. With all the distraction of a uni social life, and exams, and the catching up and deciding on her future, hopefully she won’t dwell as much on the frightening days of her illness, and will be able to move forwards more easily.

There are many positive stories on this forum. Have a look at today’s post by Muzza, for example - a truly inspiring outcome.

And also, Leukaemia Care’s many, many positive stories - told by leukemia survivors - really lifted my spirits as I was recovering. I’d advise not googling Acute Myeloid Leukaemia too much, because so much info is incorrect, out of date or based on tiny samples of people it’s fairly worthless. I’d recommend sticking to official websites by the experts, such as this.

And btw, I made a fantastic recovery at over twice your daughter’s age. My life is back to normal. There is plenty of hope to be had.

Sending you and your daughter much love, and the best of luck with the next round of chemo.

Fullofbeans X

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Hiya @Fullofbeans What a positive and helpful post - just what was needed today - thanks :blush:. I am super proud of my daughter, her positivity and strength- looks like they will stand her in good stead in the forthcoming months.

I will keep positive and posting here too - but for now thank you and have a fab day!

Sarah xx

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Oh @SarahMum a walk on the beach and baking a chocolate cake sound wonderful to me!!!
Please let us know how tomorrow goes and make sure you ask all the questions you both want to.
Next it is eating the chocolate cake, it sounds scrummy.
Have fun together

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Morning. So, yesterday was a long day. The morning went well - more bloods taken and a reassuring and positive chat with the teenage and young person nurse (she is so lovely :blush:). We were then allowed outside on good behaviour. Got some lunch but I left my car ignition on and because battery is old it went flat :weary:. I have breakdown and a guy came out quickly but that meant that my daughter had to go to fertility appointment by herself whilst I sat out in the car park with engine running to recharge battery.

She came out really upset :cry:. I think there was too much information and a realisation that time is not on our side. We travelled home quietly.

When we got home she got a call from the hospital. There are now more leukaemia cells and they have made the decision to start treatment today. So we are awaiting a call from ward to confirm a bed and will head up. It looks as if the decision has been made for us regarding her fertility (this element really upsets me and makes me angry :rage:). BUT, the most important thing is Danae and starting treatment to get her well.

So, we see what today will bring…

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Wow, what an absolutely exhausting day for you both @SarahMum I trust Danae gets a bed soon and perhaps it is worth having a chat with the teenage and young person nurse about fertility and treatment starting so quickly.
I expect if you are anything like me your thoughts and emotions will be all over the place like the rollercoaster you are both on.
The main thing is that you are both very kind to yourselves and look after yourself and I do hope the car battery holds up.
Please post when you can, you can be really honest with us about how you are.

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Hi @SarahMum,
I am so pleased you have found us and thank you so very much for taking time to update on Danae’s situation. You all must be currently swept up in a whirlwind with lots of questions, uncertainties & worries. So i am really pleased to hear that you have a lovely teenage and young adult nurse to support you all. Do know that Danae’s team are on hand to help answer any questions you have along the way.

Additionally, please do also know Sarah that our helpline is very much here for you & Danae should you wish to talk anything through. We are open 7 days a week- 0808 2080 888.

In case it is helpful in anyway, our webpage information talks through different topics which might somewhat of a support over the coming weeks- Blood cancer and young adults | Blood Cancer UK.

I also wondered if our information on fertility would be helpful in any way- fertility and blood cancer | Blood Cancer UK.

Again Sarah please know that we are very much here for you in any way we can be.

I hope today goes well.

Take Care, Lauran

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Oh gosh, what a day @SarahMum. It must be so very hard to process it all. I hope you’re not beating yourself up about the car battery. Unfortunately these things happen, and often at the worst possible time.

In a way, it’s good to get started with the treatment - bit of a mad rush for you both though, but at least there will be other things to think about, and it’s the start of the Get Better process.

I understand the fertility issue is a huge blow, and I’m so sorry. But there is a tiny bit of hope - a small number of women who think they are likely infertile after treatment, do go on to have surprise babies. I had the chemo at 50, and was surprised to learn 6 months later that my hormones had not been affected and I wasn’t yet in menopause. It’s all very variable.

Really hope a bed comes up quickly. Will be thinking of you and Danae, and hoping for a better rest of the day. X

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Hi Lauren

Thanks for your message and the links. We will take a look but it is looking like chemotherapy will take priority over fertility treatment but will ask further questions to medical team.

Thanks
Sarah xx

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Thanks @Fullofbeans

We are still at home waiting on a bed. Danae has been asked to call every 2 hours which she has done - only to be told there is no bed and call again in two hours. The doctors are insisting she comes in today so we have now been asked to come in at 7:00pm. I am not convinced there will be a bed but will wait and see…

The hospital is an hour away and I just feel this is so unfair and completely messing with Danae’s head. But - deep breath :face_exhaling: and we will wait on…

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Oh @SarahMum I am sure the last few days have really messed with both your heads and your maternal thoughts and feelings are in the mix as well.
Unfortunately since my diagnosis 19 yrs ago I have spent so much of that time waiting on medical things, which really does mess with my mind and arrangements and those of others around me.
Yes, deep breaths, stop looking at the phone, diversion tactics and talk nicely to your car.

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lol :joy:. Thanks @Erica Some good news is that I have a new car battery :battery: :blush: so we are all fired up and ready to go!

Thanks again and apologies for being Sulky Sarah. We have decided to drive up a little early and sit on the seafront with a bag of chips :fries:

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You have not been Sulky Sarah in my eyes.
Great news about the car battery, one thing off your mind.
What a brilliant idea to go up a little early and sit on the seafront with a bag of chips (each), mind those seagulls, I can smell the chips and sea from here.

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Hello @SarahMum. Just wanted to say I am thinking of you and your daughter very much. I really admire the sensible way you seem to be dealing with this. It must be such a shock. I have a different blood cancer and I was diagnosed at age 35 which seemed rather young to me at that time, but it is nothing like what you are going through. I am really sorry. For your encouragement my diagnosis was thirty years ago and I am still here. Warm wishes, Willow xx

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I had the exact same thing happen to me when I was admitted, @SarahMum. I waited all day, then got called up there (also an hour away from my home) and then had to wait for the isolation room to be cleaned etc. It’s a long and frustrating day. I think that’s how it often goes, because the previous patient has to wait to see a consultant, get their prescriptions, and be officially discharged, and then the room has to be deep cleaned - all of which take uncertain amounts of time. Really, they should just call people in when the room is actually ready! But I suppose that could be at 8 pm, and no-one wants to be called at that time for a big thing like that.

Perhaps brace yourself for a lot of waiting around in the next 6 months, @SarahMum. I seem to remember each time I was discharged, I waited hours and hours to actually go (usually because of prescriptions.) And then there are the outpatient appointments… Reading is a good pastime to develop, if twiddling of thumbs feels inadequate!

I hope the evening passes quickly and Danae gets settled into her room soon. It might be wise to take a few snacks.

Big hug to you both at this anxious time. X

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Awwww thanks guys and Good Morning. We got a room! Managed to get some sleep :sleeping: on a very quiet ward. We did get a visit at 3:00am from a check in doctor and then peace at last.

The ward team seem amazing and one came and talked to Danae about what to expect (to include daily 6:30 am bloods) I am sure you can all imagine- she is over the moon! :joy:

They have promised us a plan today as everyone has seemed a little unsure of what to do next. I guess they are still awaiting test results and I need to remember diagnosis was only a week ago (but seems like a lifetime already?!)

My employer has been great but I guess I am going to have to think about what I need to do to get through the next six months…? I can’t afford a career break so may consider part time? Even that seems daunting today so will park it for now.

I look at my beautiful daughter is her new pyjamas and my heart breaks for her :smiling_face_with_tear:. But the only way we can go is forward so let’s see what today brings…

Thanks again for all your honest and positive support. It means a great deal and I am so pleased I found you guys

Sarah xx

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Great news @SarahMum that Danae is settling in.
Yes, park work for now and financial concerns, you haven’t got to make a decision today, perhaps just see how things pan out a day at a time.
You can always post on here and talk to the Blood Cancer UK support line on 0808 888 2080 about those things later.
Look after yourselves, Danae is being looked after so please try and look after yourself too.

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