It’s been a while…

Wow … it’s been a while since I ventured here but as we head into week 11 of a shielding lockdown some old memories and feelings have been stirred, something drew me back down memory lane and lead me here.


Herbie is now 11, one year older than the maximum life expectancy he was given by Professor Paul Veys back in 2014. As Covid hit the UK our life was plunged back into a world of protection and worry that we had lived in for so long back in 2014-2018. Despite now being on just one profalactic antibiotic 3 times a week he still needs extra protection from Covid and so we are isolating again much like we did in May 2014. So what’s news?

Well Herbie is a lively, quirky and loveable 11 year old, his hair is back to the long thick locks he had prior to transplant and he’s a happy, healthy, carefree kinda chap. Over the past few years he has been seen regularly by the team at GOSH but this year we said our goodbyes to Dr Qasim (who has been so fantastic for over 7 years ) as he sent Herbie back to shared care with Oxford and an annual GOSH follow up clinic. It was an emotional moment for us all. There have been many moments like that in this journey, times that mark the end of an era and signal that we have made progress towards normality of some description. Saying goodbye to our Community Nursing team was a similar milestone but still we weren’t prepared for the swell of emotion.

This month we celebrated 6 years since transplant. Rufus is now 12 and taller than me! Herbie is 11 and just about to leave primary school. It’s ironic in a way that his first year of school was abruptly cut short due to NEMO and now his last year of primary is the same!

Life is good, even with this lockdown.

So here is a little something I made for him on the anniversary…

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