Posted on Monday 4 May 2020

Leo’s story – “I’m a million percent more worried about him at the moment”

Leo was diagnosed with acute lymphoblastic leukaemia (ALL) in February last year when he was 4 years old. Here, Leo’s mum Lisa shares their story of what treatment is like while the UK is in lock down.

It’s all a bit of a worry, but in a way, we’re used to staying in more than other people! We’re in the third cycle of maintenance treatment so we’ve been at it for over a year now. Leo’s very up and down with the meds, we’re trying to find the right dose without his bloods crashing, but apart from that he’s doing well in himself.

Our clinic appointments are now being done on the phone, but we are having to go to the hospital for some things. I went on my own at the end of March to pick up Leo’s medication. The thought of it was terrifying. The thought of actually walking in there filled me with dread, but once I got there it was fine. They had it all set up really well.

They gave me three month worth of meds, we normally get two weeks’ worth.  Looking at it it’s a lot, but it’s fine! We’ll do telephone clinic every two weeks, just to keep on top of his bloods. He’s been into hospital for chemo which, after much stressing it went absolutely fine! And we’ll have to go in again at the end of May for theatre. We’ve been told it will all still go ahead and they’re going to treat us as planned. The theatre is for Intrathecal chemotherapy. It goes into his spine every three months in case the leukaemia comes back in this spinal fluid.  He has this done every three months.

I feel very lucky that CLIC Sargent nurses come to our home to take Leo’s bloods, which means we haven’t got to go to the hospital for that. So that’s amazing. They are brilliant, they are always at the end of the phone if I need them.

I’m a million percent more worried about Leo at the moment. Throughout his treatment we’ve been isolating him but now we’re all staying in and not going anywhere. My husband isn’t in work, he’s on statutory sick pay for 12 weeks because nothing has been said about parents who have to care for children who are having to isolate. We’ve been told by our consultant not to go to work but he still can’t get paid, so that’s a massive worry. But the thought of him getting it outweighs anything. We’ll cope, we’ll deal with it as long as Leo stays clear of this.

We’re managing with things like shopping OK. We’ve got deliveries coming, and I’m lucky, my mum lives round the corner so she can drop things off or I can nip round and pick up bags from her doorstep. We’re making do!

One thing I’m really worried about is steroid week – as part of his treatment cycle he has steroids for a week and during that week you never know what he’s going to want to eat. But he’s extra hungry. So if we haven’t got it in the house it’s going to be an absolute nightmare. Each time he’ll want something different to eat but that’s all he’ll eat. We just don’t know what it’s going to be! Facebook is going to come into its own!

We’re on maintenance for another two years.  I feel sorry for the families that are being newly diagnosed at the moment because in the beginning you’re in hospital a few times a week. We’ve at least had time to get used to this new life before all of this has happened.

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