daughter with ALL

FormerMember
FormerMember
  • 17 replies
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Hi, my daughter has been receiving treatment for ALL since early may. She’s on maintenance now till July 2021.   Any tips on coping with this would be very welcome. 

  • Morning

    sorry to hear that your daughter had ALL.. I am assuming that she is now in remission as she is having maintenance chemo. Whilst I was offered the option of maintenance chemo for my ALL I decided to go down the stem cell transplant as my ALL was high risk. I did spend a few months on an oral maintenance chemo when I was waiting for my stem cells. This was a few years ago and things may have changed but I found them easy to take and no real side effects.

    sorry I can’t add anymore than that but good luck and I hope your daughter has a trouble free journey. 

    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.

     

  • FormerMember
    FormerMember in reply to Paul1969

    Hi Paul1969. Thanks for the reply. Glad you are doing good now. My daughter is doing ok in maintenance at the moment. I was hoping for some advice for me and my wife to cope. Is there another section here maybe?

  • Hi

    There is a forum Parents of Children with Cancer which is for parents with children of any age including teenagers and adult children. There will be others parents who are having a similar journey to yourselves and you may find it helps to post there.

    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.

     

  • FormerMember
    FormerMember in reply to Paul1969

    That’s great, thanks Paul1969.

  • Hi  MrT1

    I know exactly how you are feeling. Our son was diagnosed middle of August with ALL only 4 weeks after graduating from uni. Cruel irony after working so hard he should have been starting his life. He even had a job trial lined up which coincided with first week he was in hospital.  He is in remission with the sort of top layer of cells but needs a transplant start of February. Initial date of transplant was for 12th December but his MDR levels weren't quite low enough. He is on a new drug which should help with that and get him transplant ready. 

    Emotionally how to cope I don't know we just try and take a week at a time.

    Hope everything is going in the right direction with your daughter.  

    Hayley

    Hayley 
  • FormerMember
    FormerMember in reply to Cyprusfan

    Hi H,

     Thanks for the reply. very sorry to hear about your son. but glad he is in remission. Thanks for your advice.My daughter is doing good at the moment. She didn’t need a transplant but will be having maintenance chemo until 2021. Which is going to be hard waiting that long to be told she it’s going to be ok. But I still think even after that I’ll still worry about it all. 

    I hope your son gets his transplant as soon has he can and it all goes as planned.

    hope you have a very nice Xmas as well.

  • Hi 

    I find the waiting for test results very very stressful your stomach turns over and you still have to  be strong for them.

    I spoke to my brother in law his daughter is 6 years in remission  for breast cancer he said it never leaves you. 

    Hope your daughter continues on this route 

    Have a lovely xmas to

    Hayley 

    Hayley 
  • FormerMember
    FormerMember in reply to Cyprusfan

    Hi,

     we still can’t really believe it’s actually happened to be honest. 1 day we are sitting around watching the tv laughing and joking. The next day we are sitting around the hospital bed being told our daughter has cancer. As you know Yourself  I don’t think anyone can properly get their head around it. 

    hope your son continues doing well as well.

    merry Xmas and hopefully a better new year

  • Hi 

    I know exactly what you mean!!...nicholas went to A & E with flu like symptoms bad back and pain on breathing....nurse asked him is he usually this pale and asked a doctor to do full blood tests. That was it on Friday 23rd August.  We were in our tourer in Wales it was bank holiday weekend and he waited until the Sunday to tell us. Didn't want to ruin our weekend. (We live in Wales). Drove straight to London on the Monday..stayed in hotels for 3 nights then we brought our tourer up as he had to start treatment straight away. We lived up there for 4 and half weeks.  

    Your right it's hard to get your head around it. 

    Yes let's both hope for better things to come. 

    Merry Christmas 

    Hayley 
  • FormerMember
    FormerMember in reply to Cyprusfan

    Hiya,

     hope you and your family had good Xmas and new year? Sorry took so long to get back to you. 

     My daughter was the same started with bad back pain. took her to the docs on a Wednesday they said she had a high pulse and if we could take her back in the morning to test again. Still high on the Thursday. Doctor said is nothing to worry about but go to the hospital for blood tests. I dropped her and my wife at the hospital and I went back to work. Wife phoned me at about 3ish saying we’ve got to take her to Cardiff hospital. My wife Told me what they said at the hospital and that we needed to go to the TCT in Cardiff. Once we got there everything was going so fast it seems like a blur looking back on it. We stayed in the McDonald’s housing at the hospital for almost 4 weeks. 
    I’m glad I had my wife there though, not sure how I would’ve coped if I was on my own.