AML and other blood cancers in infants

Dear all,

I am 17, and called Carmen. I have a wonderful baby cousin. Her parents were hoping for her for a long time, and it was amazing when she was born, especially as she was over 6 weeks premature. She has only just turned 1, yet has travelled the world practically. about 3 weeks ago, she went to the hospital as medications for her ‘ear infection’ weren’t working. moved to GOSH (great ormand street hospital) and began chemotherapy for Acute myeloid leukaemia (AML) (acute meyloid leukaemia) expected to be in hospital until november. We were all so shocked!! Acute myeloid leukaemia (AML) is really rare in children. I haven’t seen her since last year, unfortunately.
Cancer has been rife in our family, but i don’t have memory (being only 17) of a person with cancer in hospital, let alone a baby. We are not supposed to talk about it much.

Please feel free to share your experiences here!!

xxx You are all so amazing and cancer isn’t fair to anyone, none of this is your fault. It is a rough hand, but everyone will have moments in life that they feel like the unluckiest person on earth xxx
Carmen

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Hello again Carmen AKA @YouAreAMiracle, what a lovely message. Sounds like your baby cousin is well cared for by her loving cousin Carmen! You’re so right that these experiences of cancer are like a journey in themselves.

I’m so sorry to read of your many experiences of the big C, and at such a young age. I wonder if I may ask, how have you been dealing with these illnesses so close to home? I do hope you’ve had space to express how you feel being around these illnesses? Do you have friends and others you trust to talk this stuff through with? Sometimes it’s hard to talk to family about things they’re also living with. Lots of strong feelings, often going unsaid.

Thank you for your kind words. I do hope you and your cousin are doing well through all this. Hopefully the forum will feel supportive for you.

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Hi @YouAreAMiracle great to hear from you again, you are such a caring cousin. @Duncan has given you a great response.
When a baby is so young and helpless, it must be so difficult for you.
As I said before please us our forum as a place where you can say how it really is for you.
It sounds as if you are all dealing with what is going on differently. There is no right or wrong way but it might be a very lonely place for you
Really look after yourself and we are here for you.
So is the Blood Cancer UK support line on 0808 2080 888

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@Duncan thank you, I haven’t told anyone yet, but I think I will tell my friend soon. As it has been the Easter holidays, I have only just got back to school.

@Erica Thank you!

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That’s great that you have a friend to talk about this with. I’d also say if your school has a counsellor or member of staff you particularly trust then try to speak to them as they might be able to extend deadlines and so on. That could help take some pressure off you at this stressful time.

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@Duncan , Yeah, I don’t think I am going to need to extend deadlines right now, but I have considered talking to the counsellor. My household are currently planning for us to visit my cousin but we probably won’t be able to see my cousin, because of the treatment times and she keeps having super high temperatures, and we obviously don’t want to risk infecting her. But we will be probably able to see her parents. I have got a notebook that I am putting everything about her treatment I know in.

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Just received an update via a photo. Her hair is now officially very very short, which makes her look a bit sad, but she occasionally manages to eat.

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That’s excellent that deadlines aren’t an issue at the mo. One less thing to worry about, right?! I’m glad to hear you’ve considered talking to a counsellor. I should add, and I don’t mean to be patronising, but I’m sure you know that seeking someone to talk this stuff through with is a sign of strength rather than a negative—I understand how therapy can seem like it’s for other people with bigger worries, but it can be really helpful at times just like this.

Sorry that you likely won’t be abe to see your cousin due to her treatments and so on, but maybe that’s for the best right now while she is being seen by so many doctors and specialists and probably going through some uncomfortable tests. She’s probably very tired from all that, let alone her illness. But I bet when her immunity is stronger, and she’s got used to all the comings and goings at hospital, visiting will be more tolerable for her.

Keep writing notes and expressing how it is for you, @YouAreAMiracle. You’ll be able to look back on this time and see how you were doing long after the worry has decreased. I hope you’ll see how supportive you’re being despite your own stress. Your family and cousin are lucky to have you, Carmen!

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Hi again,

A few questions and a piece of good news.

Last weekend, i went to go see my cousin, and she was allowed out of hospital for a while. Her second round of chemo begins in a few days. It was lovely to see her, though her hair has been cut and she looks sadder than she used to.

I have just realised that my cousin is technically not an infant, as she is over one, so the title of this thing is slightly misleading.

I know chemotherapy attacks fast growing cels, thats why many peoples hair fall out, but arent’t all cells in a baby fast growing as babies grow so rapidly?

When do people on bone marrow etc. list get notified if someone would like to use them?

Best wishes,

Carmen

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Hi @YouAreAMiracle I will copy your post to the Blood Cancer UK nurses, just in case anyone can help at all. @BloodCancerUK_Nurses
However your cousins medical team or parents are perhaps the best people to answer your questions, if you have access to them
Perhaps write your questions down in your notebook as you think of them.
I hope your friend is a support to you… I went to a counsellor too.
Please do let us know how you and your cousin get on.
Look after yourselves

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Hi @YouAreAMiracle,
I hope you are doing okay today? I am really pleased you have been able to visit your cousin and I’m sure she would have been delighted to see you too. I also appreciate this must’ve felt quite confronting for you. How are you coping with everything?

Unfortunately, regardless of age it is very common for chemotherapy to damage the hair follicles and cause hair loss after the first few cycles of chemotherapy. The good news is- It is likely once treatment has ended her hair will grow back quickly.

Can i ask, has your cousins medical team stated that they will be carrying out donor searches for a possible stem cell transplant? Usually, when it is decided that a patient
needs a transplant, close family relatives will be checked first to see if they are a
match for the patient. This is called tissue typing. In the instance of a match the medical team would be in touch to discuss the process typically weeks before the stem cell harvest would need to take place.
In case it’s helpful i have popped a linked here which explains the donor process in a little more detail- Donating your stem cells to a relative | Anthony Nolan.

Along with your family, friends and school- please do know that if you ever need to talk things through our support line is very much here for you- 0808 2080 888.

Look after yourself, Lauran

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@LauranBloodCancerUK
Um, i am not 100% sure she is having a transplant. I think she is having a few rounds of Chemotherapy and then the situation will be re-assessed.
Thank you, Lauran

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