Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
just thought I’d pop in and say hi, my daughter was diagnosed with ALL in may, just before her 30th birthday, and her daughter was only 4 months old. She had not been ill, she had a random blood test for something completely different and her counts were unusual so they investigated further, she was diagnosed on the Monday and started the steroids on the same day, started the chemo the next week.
Katy was well throughout the treatment- she was on Uk ALL 14 protocol and got into remission after the first treatment, however her tests showed she would probably relapse at some point so went for the SCT option. Luckily my daughter was a 10:10 match, but they said if her siblings weren’t a match they would have found a donor and just carried on with treatment until they found one .
Katy had her transplant in October and is doing ok, it’s still early days yet but they’re happy with her, they all absolutely know what they’re talking about so you need to put your faith in the doctors - and as a nurse myself that sometimes takes some doing!
It is a massive shock as everything happens so quickly, you don’t really get time to get your head round it, and with young children as well- lucky we live only 4 miles from Katy so we can have the little one whenever she needs us, but you will cry, rant, scream at anyone who tells you to have faith ( just like I’ve done) but your son and you all will get through it-
This is Katy last week at my granddaughters first birthday- so life does carry on
Please feel free to contact me anytime but there are people on here who have been around longer than me and are very knowledgeable and I have found it a great support- the forum is not for everyone either, so don’t be worried if your son doesn’t want to discuss things or listen, my daughter won’t join the forum as she says it’s not “her thing “ but she will occasionally ask me to ask people on the forum a question because she knows everyone on here is here because we’re all connected in some ways- blimey I think I’ve just had a dose of verbal diarrhoea there!
Glad to hear your daughter is doing well. I was also on the UKALL 14 protocol and I am now approaching 6 years post SCT. Hopefully she will keep going from strength to strength.
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