A question of ethics

Facing a panel of experts on the hospital ethics committee was tough, but reassuring. We met with them the other day to debate the rights and wrongs of putting Fabian through, yet more, experimental therapy. As parents, we had to argue on his behalf our personal conviction that further treatment is both ethical and justified. We also spoke on behalf of his 3 siblings, whose voice also needed to be heard as they have carried much unspoken pain these last 8 years. Our excellent consultant made a strong clinical case for the new science he is proposing. In fact Fabian is spearheading a whole new approach in the type of immunotherapy that future leukaemia sufferers will receive. Less than two years ago, none of these options would be available to us, so whilst being hugely grateful for what we have, there is also the sense that in a few years time, even more advances will have been made that increase curative outcomes. We’ve yet to receive the panel’s recommendation but their initial feedback was that the burden of treatment does not outweigh the benefit and that it would be appropriate to proceed. This gives us great reassurance that we are all doing what is best for Fabian and our family so now we are ready to press on.

Later that day, he was due to have a marrow aspirate to check the level of disease – vital to see what is going on. But it was not to be. Just shortly before going to theatre, he sneakily found a couple of biscuits and munched them down, instantly rendering an anaesthetic too dangerous. Try making a 12 year old fast all day – not easy! It was also a shame because they had planned to remove his gastrostomic tube which has become a real nuisance. Fabian is concerned that once removed, the resulting hole in his stomach will make him look like he’s been shot.. Cassia will donate her blood next week and that will be sent to the lab for modification. At this stage, no-one knows if it will be needed but the process takes two months to complete so needs to get started.

On the 2nd March we celebrated Fabian’s 12th birthday. Many of his friends came for the party which began with a trip to watch the Lego movie, a truly rollercoaster film. Back home, we received an unannounced visit from a Korean pastor who had come to pray for Fabian’ healing. It was truly moving as children and parents all crowded into the lounge to join together in prayer and God definitely turned up for the party!

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