Jun 01, 2015 at 08:30 pm

29/05/15

Update posted by Kailaidlaw161212 Kai Kai x

It was a dramatic day yesterday at the hospital. We where at the hospital in morning for IV meds, blood transfusion & lots of blood samples that were sent away one to Canada for his immune system and the rest to London, Bristol & Glasgow.Then we had an unexpected meeting with Kai's doctors because Kai's counts dropped so quickly on Monday compared to last Friday's this alarmed us all. This was due to a very small dose 0.08 ml of oral chemo (quarter of his recommend dose) which he was only on for four days. Kai is neutropenic again which is dangerous for Kai for infections also as his marrow is so sensitive to chemo it needs to be replaced ASAP. We will not stop treatment and any chance no matter how slim is a chance. Therefore the powers at be have decided with guidance and input from GOSH & Bristol that they will do a bone marrow transplant in Glasgow in two weeks time.The experts throughout the UK say Kai is in a precarious position and too risky to wait until end of July for treatment down South. Kai could not get any more chemo because it won't fix him and would make him too poorly or his infections could take over and effect any future treatment or worse lose him. We have started looking for accommodation near the new hospital in Glasgow but struggling to find something as of yet but we have many friends and family looking. CCLASP and Kai's social worker are looking too. We have also informed Calvin's carers & social worker for all his equipment to be on stand by. Glasgow have us down for going through in about 2 weeks, we should get an official date on Monday but we are going when Yorkhill is moving to the Southern General which is a massive operation. We should be there the week after they move. So will be new for us all. We will feel like the new kids at school as Edinburgh Sick Kids has been home for nearly 21 months. Will be quite emotional on all aspects for us all. Kai has under 10% chance of surviving but that is better than we have at the moment if we stop treatment. Kai is still strong and fighting so we need to keep going for him & us. 10% is still better than nothing. Kai is amazing so he could be in that % so we have to believe in that. It is going to be hard and come with a lot of complications but that is nothing compared to losing him without trying. They think we will be there 6 months including time for complications but Kai is amazing so fingers crossed.Everything has changed last minute again. This journey is a roller coaster of emotions but to save Kai we need to move fast. We are stressed and hurting that we can't protect our boy but feel better decisions are made and quickly as time is precious now. We have some of the best people in the UK involved. We also have amazing friends and family. So please keep our little smiling superhero in your thoughts ??

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