AML - Teenage

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear about your daughter.

A blood cancer diagnosis can bring a lot of stress on a family and especially when it’s at such a young age but talking with people who are on the same journey will help a lot and will help reduce the whirlwind wind that is rushing in your head.

I did not have AML but a rare NHL so let’s look for the wonderful AML folks to pick up on your post.

What I can say is that in the early days of treatment it can be a rough road as her team work on getting her condition into a position that treatment will start to take effect - this unfortunately can take time, but it is heart breaking to watch,

I have been through two Stem Cell Transplants with Stem Cells from my brother and even if her siblings don’t come back as a match then the World Stem Cell Register will be searched.

If she ends up on the SCT journey we do have a dedicated forum for Stem cell transplants for blood cancers (SCT) where folks from many blood cancers support each other on the SCT Rollercoaster. 

SCT was the only way left to treat my condition and after 17 years living with my incurable Lymphoma I am in remission - result :) 

With blood cancers every individual will follow their very own journey and the success of treatment is very individual, so you will find it hard to get anyone who will give an exact prognosis, even the experts can not do this but the best advice I can give from my 20 year journey is to keep your eyes on the goal, keep seeing all this as reaching the greater good in this and that is she finds remission.

This is going to be a long rough journey but you may find our various Macmillan Support Line Services a great help. Have a look through the link then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

We also have our ‘Ask an Expert’section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

We also have our Online Information and Support Section where you will find some great pages covering the cancer diagnosis, treatment and information pages covering most types of cancers.

Talking to people face to face can help a lot so check to see if your have a Maggie’s Centre as these folks are amazing.

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We are around to help as best as we can.

Hi Krissy, 

Just stopping by to say I had the same chemo regimen as your daughter and went in to remission after my first round of chemo, and have just had a stem cell transplant (in February) using cord blood as no suitable match could be found for me on the registry or through family. I was 27 when diagnosed and am a single parent to a young child, so the stress that my mum felt was almost doubled as overnight she became the main carer for my daughter. Bone marrow results showed I had an aggressive form of AML  so they were aggressive in their treatment. She was constantly asked how she was coping and she said she wasn't and isn't but she just hasn't stopped since. Just think once you're out of this terrible stage of uncertainty and just trying to cope - you'll be due an excellent family holiday. 

I hope your daughter is feeling a bit better xx

Thank you for your reply. It’s now 3 weeks and 2 days since diagnose. She have been the most brave courages, you day 18 years old I know. Through her strength, bravery and determination she is keeping is going. Wasn’t a good day yesterday. Very down in the dumps which she entitled to be. All her beautiful hairs kept coming out in clumps and it was hurting her head so we shaved it. She is still having platelets, blood transfusions IV antibiotics and so on. The first 10 day cycle of 4 different chemos has finished. It made her really sick. If I’m right in thinking, they will retest her bone and core again in another 3 weeks to see if the chemo has brought her into remission. She may be allowed home for a few days and then straight back to hospital for another 6 weeks and cycle 2 we don’t know much after that or what is happening. We are just taking one day at a time. My love to you x

Taking each day as it comes is a great way to do it. My mantra theoigh the early chemo days was "this is only temporary" and a year on hoping that this could be the problem "dealt with" to a certain extent, it's hard to really remember how many good and bad days I had. My advice to her is to sleep when she wants, eat what she wants if she can, let people visit let herself laugh about it. What's important now is that she's allowed to still feel like herself and not Some Sick Person, and hopefully all the treatment they're throwing at her give her the results you're all looking for xxx

Good morning , I would imagine how hard it is to watch a child let alone anyone going through treatment. The treatment journey is full of good day and bad but each day is different so the 'take each day as it comes' is a good initial plan to work with. 

I am convinced that the folks looking on go through as much as the person in the bed as often the patient is not totally aware of everything that is going on around them.

As ever journey is so different it not good to be guessing about 'what is next'. I would always recommend that you talk with your daughters Specialist Nurse...... 'consultants can be hard to pin down' as with clear information the family can plan the battle better.

If you are not doing this already you need to be keeping a note book of questions. When you get the opportunity to talk with her team the note book comes out and you work through the questions taking notes based on the answers (I have a few note books spanning my 20 years)

It is also important to understand that things can change rather quickly. So you are all told one thing in the morning and you are all working out what that means and possibly Googling it to understand more!!!!!!....... then a few hours later, before you have your head round that first information, it's all change and you are back at square one.

This is the blood cancer rollercoaster for you but keep your eye on the end game in all this, all the stuff that is going on is a means to and end.

((hugs))

You're right - its horrible and unfair. I'm so sorry your daughter is going through all this. AML can be so rough on the body and difficult for the mind to deal with. Probably the doctors are saying that, being young, she stands good odds of surviving and thriving, yes?

Keep your spirits up and don't forget to take care of yourself. She will need a hearty caregiver for at least a year and I'm guessing that will be you. 

Stay in touch and we'll share our positive outcomes!