The last 12 months since Josh's diagnosis of incurable Cholangiocarcinoma have been a scary traumatic ride that we cannot get off. He is 35 and the love of my life. The money raised so far has allowed us to get Prof. John Bridgewater, a real life hero and specialist in CCA on board as well as special testing that found Josh has a genetic mutation called FGFR2. This meant Josh could start a targeted inhibitor drug Pemigatinib which he started after Chemotherapy stopped working in June. Sadly, his most recent CT scan has shown progression meaning this drug is no longer working. Josh is also now experiencing liver pain as the main tumour is quite large.

The last few weeks have been an indescribable hell. By some miracle (the timing is honestly incredible) Prof. Bridgewater has a trial open for a 2nd line FGFR2 inhibitor called Tinengotinib. Accessing this trial was not straightforward, due to the issue of it being in NHS England. After a lot of fighting/advocating/begging to get approval from NHS Wales, we got Josh got on the trial with one day to spare, he is patient 50 out of 50 and once screening is complete he will have an 80 percent chance of accessing this drug.

We spent yesterday (27/11/24) in London and we finally got to meet our Hero Prof Bridgewater in the flesh, SWOON). We have also paid privately for a liquid blood biopsy, an expensive but incredible blood test that will tell us why Pemigatinib has stopped working, how the cancer is mutating and what else might work. On paper, Josh shouldn't still be here, but we are continuing to do whatever it takes to ensure he defies whatever odds are against him. This will mean lots of back and fore to London and time off work unpaid as we have no more sick leave to take. We have no life insurance, we have a home, a mortgage and a life to live as best we can. Amongst the darkness there are incredible glimmers of hope and happiness and we would be so grateful if you could continue to support us on our journey.