My grandson has been diagnosed with ALL and has started his treatment plan. Yesterday we were told he has an unusual genetic mutation in his cells . He is only 5. In there anyone in the same situation
We are so worried
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Hi @Angie_Mck and welcome to the forum.
Gosh, you and your family must be in a state of shock and your emotions must be all over the place. I can only imagine just how worried you must be. I hope we can help and support you throughout your grandsons journey.
Unfortunately I can’t share any personal experiences with regards to your grandsons diagnosis but somebody on the forum may have more information.
Has your grandson got a good medical team who have explained everything? There is lots of information on the website on ALL in children. I didn’t want to overload you with it but if you need it, it’s there, along with the support line. Blood cancer information and support by phone and email | Blood Cancer UK
How is your grandson now that treatment has started? It must be hard to watch such a little one go through this at such a young age, although children’s resilience always amazes me! I remember when my niece was in hospital for an infection - she was five. It was really upsetting to see so I do understand in that respect and know how hard it is.
My first impressions are that you are a really strong family who will be there to help and support each other, and your grandson through this.
Please keep posting as we are all here for you.
Sending lots of love 
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I can only imagine how you feel @Angie_Mck . He’s so young to have to face such a horrific challenge in life. I hope that he has a really good medical team but Nichola has pointed you in the right direction for support and of course we are all here to listen if you need us. Let us know how he is.
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Hi @Angie_Mck a great big welcome and I am so glad you have found us.
You and all your family must be in complete shock with so many fears and thoughts whizzing through your minds.
It must be so difficult for you to see your beloved little one so young unwell and having treatment, I expect you feel so powerless to make it all better for him.
@Nichola75 has given you the support line details if you feel the need to talk to someone at Blood Cancer UK…
I have not been in a similar situation to you but what I have found we often share similar fears, thoughts, feelings and practicalities.
Are you a close family and are you all able to talk honestly with each other?
What I would say is that I think children, from a very early age, perhaps need to feel safe, secure and loved and sense fear and anxiety in their family, difficult I know.
Research and targeted treatments for blood cancers in children have come on leaps and bounds over the last few years.
We are here for you, and your family, to share how things really are for you as perhaps only we can understand.
Look after yourselves, accept your very natural feelings and keep posting.
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So sorry to hear this news. My son had ALL aged 3 in 2012. He is now 5 years in remission.
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That’s such good news to hear. Thanks for sharing. It must’ve been a very difficult time for you all x
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Hi @Angie_Mck can’t imagine how you feel. It often feels worse watching someone else going through a tough than going through one yourself. I’ve felt that too. I’ve been much more upset by my brother’s and sister’s cancers than by my own. Your grandson is lucky to have your support and I doubt anybody could do the job better. Hope you find a way through this and things get better.
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Thank you for your kind words . I have only just returned to this page. We are now quite a few months into treatment and our little guy is doing well. His last bone marrow results are showing no signs of any visible disease .
Because he has unusual cells he is on the stronger course of treatment. He has coped ok with the different chemotherapy drugs so far .
Does anyone have any experience on methotrexate. This is his second dose and he’s still quite down after two days. The consultant has said that some kids don’t cope well with it and they stop it or don’t increase the dose
Angie
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I’m really glad to hear the treatment is going in the right direction. It must have been a really challenging few months for you all X
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Great to hear that your little guy is doing well, children are so resilient.
Do keep in touch and I hope that you are looking after yourself as well.
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Hi there, my son had ALL (now 3 years since end of treatment). He was given methotrexate once a week and it used to knock him out too. He was always really tired the day after. Although as he got further into treatment he seemed to tolerate it better. Sending you lots of good wishes, it’s such a difficult time and it feels like just as things are getting into a pattern, something else pops up. I’m sure his team will watch him closely and alter or stop his dose if necessary. Take care xx
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