A scary week!

I am so incredibly happy to say that Harry remains in remission, following now 4 monthly MRI scans at John Radcliffe, and frequent checks and tests with his consultant Shaun Wilson. The last scan in July took him to a year in remission since he finished his immunotherapy trial at GOSH. I felt this was a bit of a goal to reach at a year, but know the worry won’t ever go away. Harry is though now at middle school with Oscar; he has grown up (and out a little) and is throwing himself into school life and all the sports he can fit in too. He and Oscar are happy, much more settled boys, and they say it’s been a good year for them!
So Russ’ and my plan still stands for the time being. We are not rushing to go with Harry to the US for the vaccine trial or DFMO, as there is to date still no evidence that they make any difference, but we are continually researching and checking for other options.

We had a bit of a reality check this week when Harry told me he could feel a little lump on his neck which hurt, I could see it and feel it too and it absolutely terrified me. I was taken back to the exact same fear I felt when I was in hospital with Harry at GOSH when he was really sick with a blockage in his gut and we thought he had relapsed. The lump on his neck was obviously a gland which was swollen, and of course that can be completely normal for anyone if they are fighting an infection or virus, but I also knew only too well that there was a chance that it could also be a sign of the neuroblastoma being back. I don’t know how to explain it properly but I was literally doubled up in pain, but yet had to hide it from the boys until they had gone to bed. The next morning, after no sleep at all, I took Harry to see his GP and it was agreed with his consultant too, to take bloods and to measure the lump. The blood test came back normal and the lump is already going down. Thank God. If the lump had been on a gland where there used to be signs of neuroblastoma there would have apparently been more cause for concern, but it was one further up, so we are just keeping an eye on it with the GP. I’m quite sure the boys could see or at least detect the fear but they were both brilliant this week. Totally adore them both and so proud!

Thank you once again for everyone’s continued love and support. The MAH fund has finally reached a massive milestone of £100k! Let’s hope this can one day be used to help in a really positive way for research into Neuroblastoma and to help other families that are affected. The journey for Harry and us is far from over though and we couldn’t do it without you…thank you.