Bristol Date 5th July

Yup, we are heading to Bristol this Sunday! We had it in the back of our heads that it was a possibility, but it's a different story when someone gives volume to it and says to you that it's really happening. And with everything that has been going on lately, it sounded overwhelming and brought about a mix of emotions.



We hadn't heard anything about Bristol yesterday, just that we were waiting to hear about the swabs taken of Henry's skin as it has got a bit worse over the last few days. The last two nights Henry has been taking Piriton, on top of all his other medication, to try to help the itching and prevent him from scratching his cuts. The dermatologist came to see him today with another consultant and thankfully they said he didn't require a skin biopsy at the moment, and these look to be a result of his anti-fungal medication and his exposure to sunlight (his skin is super sensitive while on this medication!). So we will be given another cream to apply to his skin and we are praying this will sort it out once and for all.


Our usual doctor came round to see us today and gave us the Bristol news. She confirmed that yes, we are heading to Bristol on Sunday as the team over there are keen to start treatment. As I said in the last post, what's happening in his chest looks like his condition and the infection has been sorted. Really hoping and praying this is the case, and he doesn't have an infection going in for the transplant. I would appreciate your prayers also.


We were told that this weekend could be a possibility, but hearing it spoken rather than just among a million thoughts is quite hard-hitting. It brought a mix of emotions. As we have been waiting so long, and after being postponed a few times before, there was a bit of relief and release that we actually now have another date and this one is looking a lot more certain. But fear did creep in, and I think anyone else would feel that too. There are so many unknowns in regards to what is ahead, how Henry will cope with the treatment, working with a new medical team (which will be weird as the current Belfast team feel like family now!), and just the general upheaval of being away from the comfort of home and loved ones. But we have always said that the sooner this starts, the sooner Henry will be healed, and we are confident healing will happen! No matter how many waves of doubt, fear or anxiety build and rage towards us, cause I am sure these will come and go throughout, we will keep speaking to the storm, shouting God's truths at it and praising His name. God will have the victory and Henry will have an amazing story on the other side of all this.


The amount of lives Henry has touched already has just given me so much joy I can't explain. No matter who has come in contact with him, they have left with a smile on their face or in fits of laughter. And I pray this remains so. Henry is such a warrior, he just keeps getting on with it, clapping at the nurses and doctors when they have assessed him and done tests. He takes everything in his stride, and he will inspire us to do the same. It's a tough storm ahead, we are well aware of what's involved and we will most definitely learn more when we are going through it, but we have God, our faithful Father, holding us at every moment. This last week I've been speaking more truths out over the situation, training my mind to keep focus and not to wander, and remembering just how amazing and loving God really is. He never leaves us. He never fails. God's got this, and He will give us the strength we will need.


We are still to go to the hospital for his medication in the evening and morning, I'm going to speak with the doctor to see if we can get a night or two at home before we go to Bristol, but will need to just do what they advise. All of us need a COVID test which is happening on Friday so here's hoping we are all negative at this stage!!


I'll do another post later this week when it gets closer to going to Bristol, but I wanted to share these details with you for now, and ask for your prayers for what's ahead.


Love you all, God bless.