Had a message last week from Dylan’s godmother, the lady that did CPR on Dylan back in 2016. The date had skipped me by this year as I had a lot on my mind, but wow.. ten years.
Ten years since we nearly lost him for the first time, ten years since he stopped breathing on the church hall floor, ten years since we were rushed to A&E and I was told he wouldn’t survive, ten years since the QMC team came over to Derby to get him and ignored all the A&E staff by trying to save him, ten years since the day I was introduced to his Oncologist and replied with the very memorable “thank f word for that” at the diagnosis of Cancer. Ten years since we were given hope, on the same day he nearly died. Ten years since he started the treatment protocol that saved him multiple times over. Ten years since that terrible morning and the awful three months that followed.. but it was the day we were given a prognosis, and however bleak, it was better than what we had previously been told. Some of the memories are seared into my brain and in so many ways it feels like yesterday.
The boy that wasn’t supposed to turn 3 actually turns 13 in two months. That’s actually crazy!
So much has happened since then, things I’ve not updated on here. He relapsed again, he finished his FOURTH lot of treatment back in August. He was actually supposed to have his port removed yesterday but he sadly got cancelled on again due to an emergency.
We are back on watch and wait, hoping this horrible disease that has started to enter his soft tissue in his brain, stays out of the danger zone. We are lucky his lungs haven’t been affected again as I don’t imagine he would survive if they were, but he is now high risk from ND which is neurodegenerative disease. His last round of treatment was considered a ‘salvage protocol’ which is the treatment after first and second line treatments fail. They still cannot identify which genetic fault he has so he is still not a candidate for gene inhibitors in the UK which is infuriating as he would be in the US but alas we’ve fought this battle at panel to no avail. So we keep watching, waiting and hoping it doesn’t reactivate, or if it does that we catch it and stop it quick enough that it doesn’t cause too much damage. And we hope he will eventually ‘grow out of it’ when his body stops producing these faulty childhood cells.
