Flipping heck my brain hurts it has had such a stretching over the last week or so with all the intense research. It really has been like chucking a jug of lard on a running machine and expecting it to run a marathon. I will be the first person to say that child rearing is the hardest job I have ever done – no other has driven me to the brink of madness and the comfort of drink in the same a way! It’s emotionally and physically taxing and that’s enough quite frankly but it is not necessarily a tax on the brain (questions on quantum physics from Cassidy aside).
So the last week of - trawling the internet reading medical data and reports that are pretty indecipherable, sending emails to Singapore, Italy, Denmark and the States about clinical trials, speaking to the Vice president of a pharmaceutical company that calls you from New York to discuss a possible drug option while Kitty hangs off my leg asking for sweeties – well it’s all been a bit too much for my flab bucket of a brain. Though, emotion of the current situation aside, it has also been really, really interesting and I’m feeling so much more informed about Paul’s disease.
One of the promising looking drugs that I have found online is one called ‘Pralatrexate’. It’s been popping up everywhere and after a bit of digging I have found out it’s been on trial in the US and looks really optimistic as an alternative to the current chemo options for Peripheral T-Cell Lymphoma. But they are currently waiting on a decision on licensing for public use from the Food and Drug Association and that may or may not happen in September. I had a great conversation with the vice president of the pharmaceutical company who have invested in this, he explained all the red tape issues and the hopes of it being licensed and also that they are actually trialling the drug again in conjunction with another type of chemo at the moment. He said if I want to explore the possibility of bringing Paul over then he would help me find an ‘investigator’ (I think this is the person who runs the trial for each institution), to see whether he might be eligible. Which is obviously amazing, but also very daunting when thinking that we might have to relocate to the US for a while.
But, in the meantime Paul has had his chat with the consultant yesterday about the plan in terms of his next drug option and blow me if they didn’t say they thought that ‘Pralatrexate’ was the way forward. They have suggested the same regime that he would have followed had he got onto this trial in NYC! Apparently although the drug isn’t licensed yet they can apply for it on compassionate grounds because of the promising outlook of the drug for Paul. How amazing is that? Not only has it confirmed that UCH is just the most shit hot medical institution ever but it has also reassured me that my hours spent researching have been worthwhile……
So we have to have a meeting with the consultants next week but all being well he may be able to start the regime pretty quickly. Shit I thought that the docs were going to advise palliative care and tell us it was all over but it isn’t. Even if they had I would have told them they are mad and they don’t know Paul and we are not ready to lie down and die– but as it turns out I don’t need to. We have been given a glimmer and that’s enough for us. So fingers crossed that all goes smoothlyish next week
All chant : “For the love of love – give Paul and Hannah a fucking break!”
Thank you x