Update: April 2020
Since our last update, Dylan’s scans have been mixed so we could see some areas of improvement but some areas of where it had got worse. The treatment was definitely working on elements of Dylan’s cancer and we were absolutely hopeful. Dylan continued to go from strength to strength and continued going to school.
I continued to battle with the NHS and in November we got half of Dylan’s treatment finally paid for and delivered by the NHS. We were just going to crowdfund the second half of treatment and everything was going fine. However, then COVID-19 hit and suddenly Dylan’s treatment at Harley Street Hospital was stopped as it had been commandeered by the NHS. That was heart-breaking because the evidence around the treatment we were giving him was based on two drugs, one of which we could only get at Harley Street Hospital. We have no clue now how that’s going to impact Dylan.
Dylan has been put on oral chemotherapy by his NHS oncologist, but as we aren’t able to have a scan at the moment, we don’t know if it’s working or not. Dylan has never followed protocol and he is so far off protocol now that we have no idea if any of this is going to work or not. It’s heart-breaking because we are bargaining with his life here. It’s a hideous situation to be in.
In terms of Dylan, internally he has not clue what’s going on. He’s not showing any signs of relapse which is great as it means the doctors will continue to try to treat him. It will be six years next month that he’s been fighting his awful disease and he’s exceeded all expectations so far. Six years on and he’s still going. He’s eight now and he wasn’t expected to survive this long. We’ll continue to push on for as long as we can. Hopefully we will find the miracle cure.
You can continue to follow Dylan’s journey on his