So, it’s been 230 days since Seth was admitted to hospital this time. So much has happened in those 7 and a half months. I think we have a different child! A child that is happier, more content, taller, healthier and who feels like everyday is less of a battle.
We still have a journey ahead of us and no one knows yet what challenges we will face. We still do not know if Seth’s body is able to educate the new cells, we still do not know what the GVHD in his skin is going to do or if it will respond to treatment. But we have come so far.
Seth’s consultant gave a good analogy- “you can put the champagne in the fridge, but don’t drink it”. We’re not at the ‘job done’ stage yet.
However, there has been one development this week……
Yep, we have been so lucky as to be able to bring Seth home!!! We said our goodbyes to Newcastle
Our connection with Newcastle is far from over. We have to go back to Newcastle weekly to start with because he needs that monitoring. The doctors are still not 100% happy. But they are happy enough that he can finally come and live in his home with the rest of us!
Some of our friends decorated the house for Seth’s welcome home!
Play your drums and….
Although he is home he still remains in isolation. He is not allowed any contact with children, and only contact with well adults. He’s allowed to go out but not to busy or enclosed spaces, and he is not yet back to school. In England yesterday was the start of the school year for most people. But there was no obligatory photo of Seth in his school uniform. Hopefully we will be posting that in the new year if all goes well!
Seth is so excited to be home. He discovered toys in the play room that he hasn’t seen in a long time, got to see our family dog, play with his brother, and simply sit on our sofa eating popcorn watching his favourite TV programmes!
And then of course SLEEP IN HIS OWN BED!!!
We know our journey is far from over. It is not the first time we have come home hoping for a bright and easy future for our boy. But today is good, we will deal with tomorrow when it arrives!
Thank you to all the staff at the Great North Children’s Hospital in Newcastle Upon Tyne and the Bubble Foundation – you guys got us this far and kept us together as a family. Thank you.