Mad About Harry

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It’s been a while..I don’t tend to be on social media much because I find it difficult if I’m honest, as much as I’ve ap...
15/02/2023

It’s been a while..I don’t tend to be on social media much because I find it difficult if I’m honest, as much as I’ve appreciated every one of your likes, comments and of course all of the donations to Harry’s Trust which I believe has enabled Harry to be with us today. But it’s International Childhood Cancer Day today so appropriate I think for an update.

Since Harry had his surgery in November 2021 he recovered amazingly, he has been at school full time for a whole year now and despite being off sick quite a lot (minor things) he has enjoyed living a normal life again. Harry’s fitness hasn’t quite got there yet and he is still very slight but he feels well in himself and is happy so that is the most important thing to me. He has even played a little rugby at school but not quite back to that yet! His love of cricket is still very much there though, and cooking now!

Every three/ four months Harry has two MRI scans, one for his head and spine, the other for his body. He continues to be monitored closely in all areas but especially in orthoptics (eyes), as this can be one of the first areas that something can be picked up. His thyroid and skin (moles) are also areas of concern but again these are and will be monitored, secondary cancers following Harry’s intense treatment are sadly common. There have been a few scares along the way and multiple nosebleeds and headaches that always make me panic, but thankfully Harry’s last tests have all been clear and just as we want them.

The fear will never go away as a cancer mum (and dad) and sadly we have to live with that and all that it brings, and the trauma of what we have been through, which can often be underestimated, but we couldn’t be more proud of both Harry and Oscar for how they have dealt with all that has been thrown at them over the years. I know too many children that have lost their lives to cancer and it breaks my heart. When Harry is in a position when we can be more sure that he won’t need it, the Trust will make sure that the money raised for Mad About Harry that is left over from his treatment, is used to help others.

Thank you all for reading, caring and supporting Harry, my hero 💙💛

Nina xx

So Harry has yet again defied all the odds and was up this morning (when I took this photo)..he managed the pain without...
04/11/2021

So Harry has yet again defied all the odds and was up this morning (when I took this photo)..he managed the pain without the morphine pump, didn’t need a blood transfusion as they said he may, got up and didn’t even feel dizzy..did a 💩 so they had no reason to keep him in! Russ arrived at lunchtime and ended up bringing him back home rather than having to stay in hospital with him overnight..Harry got home only 24 hours after he had been in recovery!! Simply amazing this bionic boy, literally couldn’t be more proud or love him anymore! 💙💪 Xx

Harry’s surgery was this afternoon and it was a very long 4 hours here..there could very easily have been complications ...
03/11/2021

Harry’s surgery was this afternoon and it was a very long 4 hours here..there could very easily have been complications (and serious ones) but he was in the best hands and it couldn’t have gone better! Harry came round well after the anaesthesia and will be on morphine for a while but is managing the pain and is feeling happy he has a “whole head”! 😊 The scar is pretty big, one to add to his collection! Now we pray for a speedy recovery and no infections, as that is the biggest risk for him. Then in time, Harry wants to get training 💪 Thank you all so much for your comments and messages of love and support, I’ve read many to Harry throughout the day 💙 Nina x

I realise that this update is yet again very long overdue..it’s a good thing from my perspective though that I haven’t h...
02/11/2021

I realise that this update is yet again very long overdue..it’s a good thing from my perspective though that I haven’t had a lot to say, but I am sorry that I perhaps should have shared some of the positive news!

Harry has continued to have his 3 monthly MRI scans and checkups for everything. The spot on his brain that was seen this time last year has not developed, which was the main concern for me so this has been a relief at every scan.

Significant news for Harry was having his port-a cath removed a few months ago, which felt like a really positive milestone. He has also started senior school, which has been great for him so far (once I managed to win an appeal for a place at the right school for him with his closest friends - a battle I could have done without!)

Russ and I have over the last several months been considering/agonising over Harry’s next steps in his recovery. He is still underweight and a long way from full strength and fitness and where he wants to be, but is doing so well. We are nearly 3 years since his relapse and I feel incredibly blessed that Harry is here and in such a good place. It breaks my heart that so many other children with neuroblastoma and other cancers are taken from us too early. We had a choice to take Harry to New York for the Bivalent vaccine trial (amidst covid) and navigate all that comes with that for the next year, with no real evidence as yet that this vaccine does prevent relapse.. or for Harry to have a cranioplasty (first) - which is what we (and Harry mostly) have decided.

Continued in comments, please see below xx

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