It all starts on Friday...

More changes! We received a call today from one of the nurses at the Royal to discuss some appointments Henry has over the next couple of days, and we also found out that we are going to Bristol sooner than we thought...


Henry has been continuing with his daily meds and has been coping very well with them. If anything he is getting more hyper and so much stronger. This gives us so much strength also, well, mentally anyway, he has us run off our feet most of the time!


As we are so close to treatment now, Henry has to get his virology done tomorrow (just some blood tests really) and may need to get a coronavirus test done as we prepare to go to Bristol. He is then due to go to theatre 9am on Wednesday morning for his CT scan. Prayers appreciated this goes to plan. He has to fast before this so no breakfast on Wednesday morning. I'm really hoping he goes to theatre early as last time it was delayed, however I know it's something I can't control (learning to let go!)...


Then the nurse asked if the Bristol team had been in contact with us. I said no, and wondered why... so she continued to tell us that she was in the conference call with them this morning (they have one every Monday) and it was decided that we are to go to Bristol on Friday instead of Sunday... well wasn't I floored, again! After a moment of shock I asked why and it was due to the accommodation, not the treatment. There wouldn't be anyone at Clic House over the weekend for the induction, so we would need to arrive there on Friday for this. I was relieved that it was not because of Henry's treatment needing to start sooner, however I panicked a bit as we now have less time to prepare and pack now. It all feels like the date has crept up on us again so quickly, even though it was delayed before.


I came off the phone and I fell apart.


I'm the kind of person that just breaks down when plans change, and there have been so many changes throughout this journey so far. Although I do think I'm getting better at handling it! So with every lesson at least I'm learning! I guess the situation is tough enough, the ongoing shocks are just adding to the stress of it all. But after speaking with David and some amazing friends and family, we started to focus on the positives. The next days will be very busy, with Henry's appointments and with packing everything, there will be little time to sit and overthink and panic and let fear in.


We are now travelling to Clic House on the Friday but Henry is not being admitted to hospital until Sunday lunch time. This allows us a bit of time to settle together in Bristol before the treatment starts. We will be able to get all our stuff organised, get used to where we will be living, and spend more time with Henry before he goes in to isolation. It won't be as frantic as it would have been before. If we were travelling on the Sunday, we would be going straight to the hospital for admission, so it would have been so much more hard hitting and exhausting. After talking through all the positives, we know that this change is for the best, and God has a bigger reason for it.


We have believed all along, and I have said so many times, that God is in control. He can see way more than we can see, He goes before us and we believe He is making these changes for the best. So we are leaning in to Him, trusting Him with it all, and letting go of any control.


The nurse from Bristol phoned later today just to confirm everything so we were able to talk through some questions we had about the isolation room, what we can or can't bring in with us when we are with Henry, and how admission looks. She assured me again that everything will be fine and there is a team of people there to look after all of us, not just Henry. I am seriously so thankful for these people. Their hearts and what they do, it helps prepare me and give me the confidence that Henry is in safe hands. I pray for God to keep them safe and protected, but also for God to guide their hands, guide their decisions throughout Henry's treatment. I also pray for God to start a work in them, and that our family are witnesses to them.


In regards to deliveries when we are out there, Clic House have a champion in Morrisons who will be able to deliver our goods to us without issue! So thankful! All we have to do is let them know what we need, and they will get it to us in an hour! How amazing is that! Answered prayer as we were worried about how we will get food etc due to lockdown. Also, the parent who is on the ward with Henry, they will get meals provided to them. Seriously blown away by the care and support we will get throughout Henry's treatment.


We are still waiting on confirmation details for the transport. There is still a chance that we can all go in the air ambulance, we will find out tomorrow. However, as I mentioned in the last blog post, David getting the boat and then driving is not a bad idea. We have actually decided it would be better. So weirdly we are hoping that they decide only one of us can go with Henry. I know, something we were so freaked out about before is now something we are praying for! But whatever happens, we know it's God working for the best, and it reduces the risk for everyone involved.


I will update you all on this tomorrow, and how Henry's appointments go! Please keep praying, I've added some further prayer points below...


Prayer Points


  • Give thanks for these changes and the reassurance that God is in control, and for the medical teams, social workers, Clic Sargent teams involved.

  • Thanks to God for always guiding us throughout everything that has been, and all that is ahead, and that we remain aware of his goodness even in the darkest times.

  • Protection over everyone involved and the other families going through similar treatments, and that we will be witnesses to them.

  • Final travel arrangements are confirmed and it's God's way.

  • Henry's virology and CT scan go well without any issues.

  • For strength and peace as we spend the next few days preparing for Bristol.

  • Henry remains as healthy as he can be for treatment.