Acute Lymphoblastic Leukaemia

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Georgesmummyb's picture
Georgesmummyb
Acute Lymphoblastic Leukaemia

My 22 month old son was diagnosed with ALL on 27th Nov 2014. We're in the intensive induction phase and still in hospital. He is very neutropenic at this point and we are just wondering how people cope with everyday life with their little one? We're worried about even nipping to the shops with him when he's out incase he catches something!! We want his life to be as normal as possible but can't help seeing germs everywhere!!!

cmr4478's picture
cmr4478

Hi there, I hope you are adjusting to things and your son is coping with treatment. My son was diagnosed with ALL 5 years ago, he is now 6, 2 years into remission and fighting fit. I remember we didn't go out for the first 9 months after diagnosis but then began to realise that we couldn't live like that, plus he had a twin sister to consider. We made choices about who we saw, where we went and what we did. We avoided swimming, soft play places, confined spaces and farms. We did loads of outdoor activities and to this day he much prefers being outside. He was frequently neutropenic and we would take extra care at these times not to mix too much and avoided crowded places, nursery, shopping trollies, trains etc. the fact is, when they are neutropenic they are more likely to give themselves an infection as they can't fight the bacteria we all have on our own skin. It is so hard right now, but you will weigh up each invite, each party, each family gathering and decide that week if you think it's the right thing for you. Looking back we did miss out on lots but we managed to keep him safe for 3.5 years and got the balance of normality in there too. In time he will need to go to nursery in order to mix and get some social interaction, the key is to educate the other parents about his condition and explain about measles, chicken pox and infections. The parents at our nursery were fantastic and always put my sons health first. I wish you all the luck and hope your son makes a full recovery, the survival rates now are amazing. He will give you the strength you need to get through the next few years. Love and strength to your family x

Georgesmummyb's picture
Georgesmummyb

Hi, thanks for your comment.
We are one day out of hospital now as he was readmitted with an infection in his central line which unfortunately after just two and a half weeks has had to come out! :-(
We're just taking one day at a time at the mo, it does feel a little like cabin fever as we have been in isolation at hospital and now at home too as he is neutropenic.

It is lovely to hear that your little boy is doing so well, I love your picture.

rakz105's picture
rakz105

Upholding you both in prayers.
Hugs,
Rakz