Thanks again everyone for your such kind wishes. We are home and all together again after 7 nights at BCH😃. Its been quite a week - the worst since initial diagnosis and weve had to make some big decisions. We decided on Friday to take Fin off the clinical trial - this meant that he could get his Hickman line removed so we could eliminate that potential source of infection and by removing the trial drug we could eliminate the possibility that it was the trial drug making him ill. We thought it would be a couple of weeks before surgery to remove the line but. after further very high temperatures on Friday and Saturday night he went into emergency surgery on Sunday to have it taken out. He has brightened up very quickly since removal and even though they havent got any proof everyone feels it was almost certainly a line infection that has caused the recurring illnesses over the last 6 weeks. The thing we are most hoping is that we can now focus on getting his standard chemo a) on time and b) increase the dose in line with the ideal treatment plan. We have got to the stage where it felt we were gambling the proven chemo for the unproven drug and the stakes are way too high. It also gives us more scope to explore complementary or alternative remedies to try and keep the tumour from reoccurring. So, its a bit of a scary crossroads, there will be less hospital visits and NHS treatment but we are sincerely hoping Fin will experience significant improvements in his quality of life compared to the shitty last 6 weeks and we will continue to try everything possible to get our brave boy better. With big thanks and love from The Churches xxx
Posted on: Tue, 20 Jan 2015 21:12:32 +0000