My son just 18 just been diagnosed with A.L.L

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Hi I’m new here , my son has been diagnosed with A.l.l , he’s just finished phase 1 we have to wait 10 days now then he has to have another bone marrow and we go from their , I’m heartbroken Broken heart don’t no what each day is gonna be like it’s killing me seeing my son go threw all this I am at his bed side morning noon and night I do suffer bad ptsd anxiety depression and am on all sorts of mKissing hearts but seeing my son so I’ll I haven’t got chance to sort my health out he needs me more than ever I sleep next to him in a chair with my cpap machine I just have nobody to talk to I’m scared to speak incase I upset my son as he dosnt let me speak to doctor I have lots of questions should I pull him to one side and tell him my fears and ask questions I want to ask x To everybody sufferinKissing heartright now I’d like to say keep fighting and f you cancer my sons gonna smash ur head in Kissing heart we’re in liverpool clatterbridge x 

  • So sorry to hear this.I went through the same things with my 24 years old son but my daughter was there and we used to take turns.Get a folding sofa, you can lay down.Yes, speak to the doctor about his prognosis as he is q young adult and have a right to know but don't discuss with your son.I used to speak to the doctors in a separate room.Speak to the hospital as you can get someone to help out in house work.You need to look after yourself as your health is important for you and your son.Feel free to message me xx

  • Hi

    Sorry to hear about your son and hopefully you have managed to get some answers from his medical team since you posted. I was diagnosed with ALL in 2012 aged 42 and went on to have treatment and make a full recovery and now almost 10 years later continue to live life completely normally. I run my own business, play sport and travel etc. I am sure your son being young will also go on to have a good outcome. I appreciate it is hard as the carer and the best advise I can give (according to my wife) is take 1 day at a time. The treatment can be tough but it is quite doable. Any questions feel free to ask and good luck to you all. 

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • Hi

    Just thought I would see how your son is getting on and how you are holding up?

    Paul

    What is a Community Champion?

    You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

     

  • He’s not to bad just home sick and having chemo in spine as we speak thankyou for asking I’m just taking each day as it comes and reading up on A.l.l missing my family and friends x but I need to be by my sons side we’re in it togeather xx my older so. Is coming intomorrow to see if he’s a bone marrow match x 

  • Hi Sophie 

    my son was diagnosed in June it was and still is a massive shock. There are so many questions, why my son, why is this happening, why can’t I help him. You fell so helpless and also have to stay so strong and positive. My heart is broken and there is absolutely nothing I can do but trust in science, medicine and the doctors. People come up to me and say he’s a strong young lad he will beat this but no one truly knows if he will and sometimes I just want to say “ do you know something I don’t know” I truly understand what you are going through. You are not alone x

  • Hi and thankyou for commenting I feel exactly the same as you,you have just described exactly what I feel too .we are still trying to process it as you will be too  x did you want to just run run run as far away as possible I did and many others do who I have spoken too I just went home and sobbed untill i had no more tears then my heart was telling me get up and stay by his side and make sure am on top of it looking on Google search got a book pen and started writing what his meds were etc and what they were for every time oncologist comes in they say anythink you want to ask ? And I go to speak and my son stares at me you no the look we give children when their being naughty lol so I keep quiet so I’m scared to upset my son as what he’s going threw is indescribable so as long as we making progress the questions can wait till time is write I will pray for you all as that’s all I can do now it’s his journey but I’m by his side every morning night just take each day by day and if I can help in anyway by being in the same boat I will xwe are all in this togeather xx

  • Hi Sophie

    my son doesn’t actually realise how sick he is. He hasn’t looked anything up and I get it. Where as I did the same as you read up on everything “ make sure you only get info from Macmillan as other sites can scare monger”. He refused to go to hospital today as he was so tired and sick. Because they can’t see a wound they believe they are ok. I have now put my sons medication into a dosset box as he found it really difficult to deal with the mediation as some were daily and some were 3 times a week. Keep on talking to your boy but I also know that my son keeps his feelings from me as he doesn’t want me upset. I worry the cannula might get caught and even though he is 24 I get him to message me even when he gets out of the bath so I know he’s ok. Have you got family and friends around you as weirdly I like listening to their good and bad news as it is something else to think about. You also have to look after your mental health. When my son was diagnosed I felt so guilty if someone made me laugh or I felt happy about something. Thinking of you x

  • First of all thankyou so much for talking to me , it’s very very hard for us as their mothers not to worry it’s our mother instincts kicking in men hide their pain we do need friends and family around we alL do I’ve got no body here my friends are going threw a lot them selves I try help them all x to keep my mind occupied x I also feel guilty if I go out for a ciggy which is my reliever  im a recovering alchoholic and done 10 years off it that’s least I have to worry about as long as I have my puffer and ciggy am ok x You will be so scared now as I am too x unfortunately their adults now and us as mothers still worry worry worry it means we are amazing mums and woman because if we didn’t worry like we do then we wouldn’t care x im a bad worried as in 1999 my baby girl I dreamed of from a child passed away of sudden infant death (cot death) their was no reason why so I’ve had that on my mind for many years 24 Shola  would be now so when I found out callum had this luekemia my defence mechanism came up and we have soldiered on taken each day as it comes don’t talk much as he’s just turned 18 and been told he has blood cancer so I just stay with him so he Dosnt have the worry of me drinking and to support him he’s gone very paranoid too very snappy at me won’t let me ask doctor questions always gets annoyed if I clean the room or ask questions so I have to sit their saying nothink x praying for all our warriors x

  • There really are no words for our child being diagnosed with cancer. My son was admitted back to hospital yesterday and I’m a mess. No one will tell me anything as he is an adult but to me he is my baby x

  • Hi Paul I’m starting to feel frustrated so is my son we keep getting told different things like he had chicken pox now their not the something else but don’t no what I’m scared tired and happy at same time x what are the nurses in red x ? Question x please