Today: A bit of head scratching…..

Hello again. Wow what a week. Its been amazing, confusing, stressful, tiring, scary, fun and inspirational!

Since my last today update (can be viewed here). Seth there have been a number of days where Seth has had a temperature which has resulted in increased respiratory rate, heart rate and blood pressure, but he has remained happy and positive in himself. As a result of this we have had a CT scan this week under general anaesthetic. The results of this show two areas of infection in the top of both lungs. Obviously this is a concern and it means that he needs the transplant soon if he remains without any form of protection as it seem the antibiotics he is on is managing it to an extent but they may not cope long term. They did manage to get a good sample of mucous from his chest whilst he was asleep so hopefully something grows from that and we are able to identify what exactly it is on his chest….fingers crossed!

I’d like to remind you of something I said in a previous post (here):

“They will give a drug called ATG everYday for 5 days starting Monday 9th March. This drug wipes out all the T cells. Then we wait. There is a possibility that Seth’s own neutrophils will come back, but they may not. He may be left with an empty bone marrow if the T cells have been able to cause enough damage. So them coming back and giving him a little bit of protection is best case.

Or the bone marrow may come back as donor cells…this will cause more head scratching and frowning from the consultants!! Let’s be honest Seth really likes to confuse things so let’s not rule it out even if it’s thought to be unlikely!!”

So, here i was talking about them giving Seth a drug called ATG. This drug kills active T cells. The aim was to get rid of the cells from the last transplant to allow his bone marrow to have a break and his body to return to normal function. The intention was that he would start to maintain red blood cells and platelets again and there was a small hope that his own neutrophils would return to provide some protection over the next few weeks while we wait for transplant.

So, over the past few days Seth’s bloods have shown a very small insignificant increase in his neutrophils (not enough to provide him with any sort of cover), BUT also an increase in his Lymphocytes (T and B cells) which means that the T cells they got rid of are now coming back……… this is where it gets complicated….

This could mean that his bone marrow is now producing T cells (donor ones as he will never be able to produce ones from his own DNA). These could be well-behaved T cells and provide him with protection and a working immune system (however, we are not seeing any significant increase in other immune cells at the moment).

OR his bone marrow could be producing T cells that are not well-behaved (like the ones that were killed off by the ATG). These would come back and cause Graft Versus Host Disease again. Seth has damage to his skin from Graft Versus Host Disease and he has damage and infection in his chest. So these  T cells may cause problems there, which we do not want.

So at the minute we don’t know whats going on!!!! They are taking blood to look into what cells are there in more detail to be able see more of what is going on, and this week he has his gallbladder removed and a few other bits done in surgery. Whilst he is recovering from this we will be monitoring what is going on with his immune system and skin and discussing the plan with the doctors.

This week Seth has moved rooms to his transplant room. He is in stricter red isolation so we are washing our hands more than ever which is making them red and sore, but that’s nothing in comparison with what Seth has been through so we’ll get on with it!

Also we have had the amazing #wearyellowforseth day. Which Seth loved. He was visited by local firemen who gave him a real fire suit and brought the fire engine outside his room. They then got lifted up to his window. (https://youtu.be/n9OSXjLLwHM). He loved every second. He has also receive gifts from various people, which has kept him busy.

But he has especially loved looking at everyone’s pictures! The dogs dressed in yellow has made him laugh out loud, he has been asking to look at more and had an amazing day Friday spending most of the day out of his bed and on his feet.

If you want to see ALL the pictures posted to ALL social media you can at http://www.wearyellowforseth.com.

Saturday morning he wanted it to be yellow day again – because that was his favourite day! So thank you everyone!  We really had an amazing day and the positivity shared on that day will help us keep Seth positive for a long time. YOU ALL DID GOOD!!!

Seth received some balloons from someone and LOVED them!

Seth and Me sporting our matching t shirts!