We went to the hospital today for Henry’s daily meds to fight off this possible fungal infection. While David was in the ward with Henry, I phoned the social worker to find out what was happening regarding Sunday and Bristol. There have been some big changes...
My lovely social worker said that she couldn't tell us anything, but what she could say is that the doctor wants to speak to us today. Totally respected her position, but my eagerness for finding out more grew! Unfortunately as only one of us could be on the ward, I remained in the car park and just prayed. Gave thanks for all God has done so far, and acknowledging that He is ahead of us in all of this. He knows the plans and we are to trust.
I phoned and texted parents and friends to ask for prayers while we waited. Honestly, I felt in my gut that we weren't going on Sunday. But I kept my focus and prayed. I opened Spotify to play my 'solitude' playlist and began to worship. Now, I think when a playlist runs out, similar songs start playing that are not necessarily on the playlist, but however it happened, the following song started to play...
Listening to the words, it reminded me that God is the only one who brings me peace. Especially after the last fews days and in those moments that I tried to control things. I need to keep my eyes on Jesus. Please listen to the words in this song, it's beautiful and really felt I had to hear it, maybe someone else does too.
So I continued to pray then the social worker called back to say the doctor would be with David in 10 minutes. Henry was still getting his meds at this point and was very settled.
David texted to say the doctor had been. Bristol has now advised to postpone the transplant due to what had happened this week, and the question mark over what they are seeing in Henry's chest. The doctors are pretty sure it's not an infection, but without being completely certain, we cannot take any risks. If we proceeded with the transplant making a wrong assumption, when Henry reaches transplant day after the chemo, he will have no immune system. If an infection was there and he had no immune system to fight it off, it would be too late for the medical team to treat and we would be looking at a very different outcome. I dread to think of that, so I am beyond thankful that all of this has been discovered and these changes are being made. Ultimately, it's for Henry's good. Regardless of what we want or that the medical team are ready to get going, Henry's health comes first. The transplant is serious and risky enough, we don't need any other risks to be added to the treatment.
We are now to go to Bristol for admission on 17th May. 4 weeks away. And in the meantime, Henry is to get his meds and antibiotics as well now, daily. Thankfully these are given through his lines, so he doesn't get distressed during this. They are going to plan for a nurse to come out to our house to do this at least 4 times a week to limit the amount of times we are taking Henry out of the house due to Covid-19. What an amazing team!! We are to still go up tomorrow again, but they are going to try and organise the nurse to come out to us on Monday, Tuesday, Thursday and Fridays until we go to Bristol.
So yeah, big changes. But honestly, I felt relief and a real peace. Yes we are keen for Henry to be treated and cured of JMML, but we always said we want him to be as strong and healthy as possible for going through this tough treatment. We now have 4 weeks at home with our precious son, more family time to enjoy and memories to make before we step in to the storm. After what has happened this week, I don't think we would be in the right head space for going to Bristol, so this time also lets us prepare our hearts and minds for what is ahead. It has given us time to breathe and refocus. The travel and accommodation plans will also be arranged now with all this in mind and it will most likely work out better for us.
I believe there are more lessons that God is going to bring us through over the next few weeks that will strengthen us even more. There is so much goodness to come from this journey, and the timing for everything has all been down to God. Every single time. Including this change now. There's so many reasons for it, and I'm believing God is changing it so more lives can be saved through it. God knows exactly what is going on. God's timing is perfect. And that gives us so much peace. I'm reminded to be still, trust, lean on God and let Him have control of everything.
Henry continues to react well to the meds for whatever is happening in his body.
Bold prayers for healing, be it before treatment or through treatment.
We can enjoy this additional time at home, remembering to keep our focus on God.
Every person involved in this journey stays healthy and safe.
All the preparation continues to go well and without issues.
The families on the ward we are going to in Belfast and Bristol remain safe and well.
Give thanks for all the medical teams working through this pandemic.
Give thanks to God for always providing and changing plans for the best! We want His way only, and His name to be glorified in all of this.