Thursday was a long tiring, hot sweaty day in London, as we attended Archie’s BMT consultation.
I’m afraid to announce we didn’t receive the news we expected, and therefore we’re digging deeper for a little longer.
So, the good, the bad and the ugly.
Let’s start with the ugly – In essence Archie’s organs are still badly scarred through iron overload. What does this mean? If Archie was to proceed with a BMT as early as next week, the risk is, Archie would unlikely survive the operation, with figures as high as 80%.
The bad (albeit manageable with lots of help) – Archie will now switch his daily medication through a syringe driver from 10hrs to 24hrs, 7 days a week with a higher dose. How will this help? By increasing his dosage further, we will attempt to reduce iron overload over a short period of time, but this carry’s risks which will need to be monitored frequently. In addition to the increase in oral medication, it’s a big ask!
The good! Archie was amazingly receptive and showed real courage and determination as he leaped over this hurdle towards the next. His bravery has excelled once again, whilst accepting a multitude of risks, along with battling another several months of blood transfusions, weekly trips back and forth to see the doctors, hospital for tests and so on.
We are truly proud of Archie and his brother as this has been a tiring 8 Year’s and we’re still fighting day in day out.
We are incredibly grateful for the support we have received throughout our campaign to date, it has made a huge difference, and it will continue to make a huge difference as we battle on ahead. We may get tired, but we don’t give in.
Thank you and please continue as you have, to provide the support towards a journey that will shine through in the future, hopefully in the coming months ahead.
P.s. Archie has some of the finest Doctors and Nurses in the country behind him all the way. Both in King’s Lynn and London. They don’t make the decisions, they guide us and act upon our interests. They‘re fantastic!
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