Day 37

Hi everyone! I hope you're not missing us too much!

Things have been travelling well. Shane is continuing to improve every day. His appetite has dramatically improved this week! He's now able to eat the same amount as before, he just suffers from tummy discomfort when he does! Some foods are starting to taste better, but other foods still have no flavour. He is starting to enjoy his food though, and eating isn't so much of an issue any more. This is a big relief for us, as meal times have been difficult as Shane hasn't wanted to eat some of our normal meals, so we've basically had to start over again with our meal planning. But this has also been a good opportunity to try new things!

We had a review with the Doctor yesterday and all is continuing to improve in their opinion too! Today the steroids were reduced to 75mgs, and some of the Tacro (immunosuppression) also. Liver and kidney function are all perfect. Shane's Platelets are still very low, so there is high risks of bleeding with any cuts etc.

Shane's skin is looking much better. He has reduced the amount of steroid cream that he needs, but there have been some small patches of skin changes so he still needs to keep some of it up.

Shane has been suffering from a bit of fatigue the last few days. He was a bit ambitious on Wednesday and did 45min on his bike in the living room while watching a DVD. It was an amazing effort, but he's been pretty tired since then. Today we endeavoured to go for a ride, but we forgot how hilly our area really is! Shane did really well, but needed to walk up one of the last hills. Its so degrading for him as riding a bike has always just been so natural to him! But, at least its a start.

So I have been pondering further on Shane's new immune system, Leroy. In 12months time Shane will have to re-do all of his immunisations again. When you think about it, his immune system is less sophisticated than a newborn baby's. They at least have some protection from their mothers, and are generally kept safe from exposure to too many people. That's not so easy to do with Shane. He still needs to get out of the house and go to the shops etc. So we need to be even more careful as contagious diseases like chicken pox could be a big problem. This also applies to things like the common cold. 

Your immune system has a memory, each time you get sick or immunised, your immune system learns to recognise these diseases, so the next time you come into contact with it, you can recognise it early, and remove it quickly. Shane's new immune system most likely won't have any recognition of these diseases. 

Shane's uncle, who is on the bone marrow registry, has been asked to donate! We are thrilled to hear about this! Congratz Kent on having the opportunity to do such an amazing thing! 

xx