Mum of 4 year old with ALL

Hi, just joined the site. My 4 year old son was diagnosed with acute lymphoblastic leukaemia almost 4 weeks ago. It's been a terrible shock and we're trying to come to terms with it all. He's truly amazing and is taking this all in his stride, we're so proud of him. I'd be interested in chatting to other parents in similar circumstances. To moan, vent, exchange experiences etc

  • Hi Oki,

    I have just joined the forum myself. Sorry to hear about your son. I am not a mother but my husband had acute myleoid leukaemia. We've been fighting it for 4 years. It is shocking when something that terrible happens to you or ones that you love but you need to stay strong, be support and have support for yourself. Talking with others, sharing your fears and feelings definetly helped me, so write if you have need to do so. I hope the treatment will go well.

  • Hi Oki,

    Sorry to hear about your son.  I can appreciate how you feel.  Our son was 16 weeks old when he was diagnosed with acute myeloid leukaemia.  He is now in remission and we are keeping our fingers crossed for the future.  Please do feel free to contact me with any questions / concerns etc.  Best wishes  Joanne

  • Hi, and welcome to this site. I am so sorry to hear about your son and can not begin to appreciate how you are feeling. Its always hard to accept when anyone is diagnosed with cancer but when it concerns someone as young as your son, it must be truly devastating. I have just recovered from prostate cancer and while I was having my 37 radiotherapy treatments, I found it so painful to  see the amount of young people being treated while I was waiting for my treatment. Several days I came home quite upset because of what I had seen.

    That said, I do think children are incredibly brave when faced with the situation your young son is in. I meet a young boy a couple of years ago with the same cancer as your son and he also was so very brave and his parents were really lovely people. I hope your sons treatment goes well and you have every right to be proud of him.

    Please take care and I ask you to please keep us updated on his situation. Best wishes to you all, Brian

  • Thanks all and sorry to find you here. And great news that your son is in remission Joanne! We're hoping for the same soon. He has a bone marrow test for remission/MRD on Tuesday and we should have the results the following week. At the moment, we're trying to take each day as it comes. The hardest thing to deal with so far has been the steroids (dexamethasone) - his appetite is unbelievable and I'm also worried about his weight. I know it's only temporary but it's impossible to keep up with his demands for food, day and night! And for being such a slight boy just a couple of weeks ago, he is filling out at an alarming rate.

    Today has been a down day, he can't really be bothered to do anything so we're going to make an effort to get out and about tomorrow.

  • Hi Oki, Hope your son has now recovered completely and is leading a normal life. My daughter who has just turned four got the most awful gift on her birthday - was diagnosed with ALL. She has been through few chemo therapies of the first 29 day cycle. Steroids have been making her eat quite a lot and she is hungry all the time. I don’t know how to handle that, she has gained 4 KGs in a week and there’s still 2 more weeks of steroids to go. I just wanted to understand if you faced any such issue? I would also like to connect with any other parents in this group who are in similar circumstances to share feelings. Thanks in advance!