Do children diagnosed with ALL cancer surviv.are there children who are survivers
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Dear @Bm1
Thank you for posting and welcome to the forum. I really hope that you find it an informative and supportive space.
May I ask is it your son that has Acute Lymphoblastic Leukaemia (ALL)? If so, have you been able to speak to your sonās Haematology Consultant or Clinical Nurse Specialist (CNS) about prognosis?
A general answer to your question is that yes, children diagnosed with ALL can survive. I would add that survival is dependent on disease risk which the Consultant can speak more reliably about. These conversations are important to have with the treatment team as they will know the clinical situation in detail.
Here is our information on Childhood acute lymphoblastic leukaemia (ALL) - what is it, symptoms and treatment | Blood Cancer UK, within this webpage, there is a particular section on Childhood acute lymphoblastic leukaemia (ALL) prognosis | Blood Cancer UK
I do hope that this helps and please do get in touch if you would like to talk to one of us in Support Services Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Hi @Bm1
First if all, Iām so sorry your son has been diagnosed with ALL - you must be in a very difficult place right now. Iām glad youāve come to ask for support - this forum is so valuable in that regard.
I donāt know anything about ALL unfortunately - I had the other acute leukaemia, Acute myeloid leukaemia (AML)- but I do know that leukaemias are now so much more treatable than when I was growing up. I actually had my leukaemia just a couple or so years ago, and after chemo and a stem cell transplant, Iām really well- and I was diagnosed at 50. Children though are much stronger and more resilient, and every trick in the book is thrown at them to get them through it.
Hopefully someone with direct experience of childhood ALL will get back to you, but in the meantime, please keep talking to us if youād like. Iām a mum, and Iād have been in a far worse place if my then 14-year-old son had had leukaemia rather than me - itās every parentās nightmare.
Hope youāve got some support around you, and get a clear plan from the haematologists soon. X
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Oh @Bm1 I am so glad that you have found us, I cannot imagine how you are feeling and thinking and it is so much worse when it is your chid and you are powerless to make them better.
Research and trials have come on leaps and bounds in recent years.
I cannot better @GemmaBloodCancerUK and @Fullofbeans responses to you, but to reiterate that we are here to support you and so is the Blood Cancer UK support line.
Please do keep posting I look forward to hearing more about you both and the main thing you can do is to really look after yourselves
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Thank you so much. He is responding well to chemotherapy.he completed his first section and he is in remission.its hurts so much to see him in pain. Filling helpless and canāt help him in anyway to fill better. He had a swollen spleen and liver and couldnāt even sit. His mother disappeared when she heard of his diagnosis and I have to struggle and fight with him in thisā¦ it has drained me in every perspective. I even looked for such groups in Kenya I couldnāt find one but am glad I found this
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Oh, @Bm1 oh, I feel for you, feeling helpless must be so, so hard, especially when he is in pain.
You also have to work through the fact that his mother has disappeared.
Yes, you must be completely drained in every perspective.
I am presuming you are in Kenya and I am sorry you have not got a local support groups.
As I said before it is so important to look after yourselves so you can look after your son, please do keep posting when you have a chance
Yes am in Kenya, i
will do just that. Thank you
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Hi, just found this forum
My beautiful teenage daughter was diagnosed with leukemia on 22 September 2023, and it has been a nightmare 10 months.
For 10 months solid she was an inpatient at alder hey, and has only been living at home for the past 6 weeks. Even now, she has to return to the hospital everyday, 7 days a week for a 2 hour anti-fungal infusion, due to developing a rare fungal infection last October.
Lily turned 17 on 10th May, and has been so devastated by all this, as we all have. We had a family holiday to Majorca last August, and little did we know what was round the corner. It just came completely out of the blue. We returned from Majorca on 12th August, and she kept saying she had a really sore throat and was worried it was septic tonsilitis. On the bank holiday weekend, last weekend of August 2023, she came upstairs and said she felt like she couldnāt breathe, and so I rang an ambulance and blue lighted her to the local A & E. She had done her GCSEās that summer and had got a place at the local FE college to study Hair and Beauty (bitter irony, as little did she know she was set to lose all her waist length blond hair). The A & E department ran some blood tests and couldnāt understand why she had hardly any white blood cells and neutrophils of 0. something. During years 10 and 11 at school, she had frequent absences because she was always ill with a sore throat/chest infection/cough/cold, where nobody else in the household was ill. For 3 weeks, they continued blood tests and were clueless, coming up with things like āAplastic Anemiaā. After 3 weeks of puzzlement, they decided to do a bone marrow biopsy, which I knew wasnāt a good sign. A consultant rang me one night after 3 weeks and said they were transferring her to Alder Hey as they had more resource for children, and he still thought it was aplastic anemia. Then came the bombshell, on the day we were transferred to alder hey.
She was diagnosed with ALL (Acute Lymphoblastic Leukemia) on 22nd Sept last year, and my world collapsed. I honestly felt like I would die of a broken heart.
And I still feel this way.
She had 5 weeks of aggressive chemotherapy last Sept/Oct, and I was staying over in her hospital room one night when she had 4 āgrand malā seizures, each lasting 2 and a half minutes, was transferred to intensive care, in a coma for 3 days, and when she woke up she said she was paralysed from the waist down.
Her nerve endings are coming back and she is having to learn to walk all over again, on a zimmer frame and crutches.
She had waist length blond hair, and is heartbroken as she is now bald (she had planned to study a hair and beauty course last September).
She has completed 5 weeks of chemotherapy, 9 weeks of immunotherapy, and another 5 weeks of chemotherapy, and is now on āmaintenanceā, which is lower level chemo.
She will be receiving treatment until October 2025. We are all broken as a family. I donāt think I will ever mentally recover from this.
I went back to work in January, and work 3 days a week, mostly from her hospital room using the hospital wifi, and caring for her in between, as she canāt do anything for herself.
Its heartbreaking. And my 13 year old boy has found it very difficult, as Iām mostly at the hospital and hardly at home.
Although we had hoped she would be in a position to start college this September, having deferred her place from Sept 2023, the reality is that she will need a further year of rehab before she is able to progress onto college.
I am utterly desperate for success stories, parents of other teenagers who were affected by leukemia who have come out the other side, and whose teenagers have gone on to lead normal lives.
Anybody who can give me some inspiration, please do
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Hi @clareemmett I am really glad that you have found us and posted with what has been happening to you, your daughter and son over the last year.
You must be absolutely exhausted emotionally, physically, psychologically and practically and torn in all directions. Your instincts as a mum are in a mix too, she is lucky to have you.
It is so difficult as your son needs you too.
If you feel you might like some help Macmillan cancer support offer some services as might your GP.
I found some talking therapy helped me.
It sounds as if your daughter has also been through so much at such a young age and I hope others on here can share their experiences.
The Blood Cancer UK support line is there for you on 0808 2080 888
Be kind to yourselves and please do keep posting
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Hi @clareemmett
I attach a couple of links for you which might be wat you are looking for
Childhood leukaemia | Blood Cancer UK
and there are a couple of stories in Leukaemia UKās stories website which what be of interest
Stories Archive - Leukaemia UK
xx
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