top of page

Things just keep getting more confusing

Henry had his CT scan yesterday morning to check how the medication has improved his infection. The doctor shared the results with us a short time ago and it wasn't really what any of us had hoped for.

Last week Henry's health wasn't great, as I shared in the last video update. He had an upset tummy, awful nappies, his skin broke out in cuts on his face and arms, and he wasn't eating or drinking as usual. Thankfully he has improved and is getting back to himself now, and the doctors discovered why all this was happening. The dosage of the medication he is on, voriconazole, had to be adjusted as it was showing high levels of it in his blood. Once this was adjusted he was back to himself after a couple of days. So thankful they discovered this as I thought he was catching so many other things all at once. His skin has improved so the doctors don't think it was eczema, just a reaction to the medication. He still has his leg cast on due to the buckle fracture above his ankle, and this now has to stay on until 13th July, longer than we were initially told, but this means it will definitely be healed. Henry is coping so well with it, it's almost like he knows he has to sit while it's on. The doctor did say he may end up walking on it, but at the moment he's decided to stay safe thankfully! He's enjoying pointing at various things around the room and having me or David fetch them for him lol.

We are so happy to have our usual charming mischievous son back! Giving high fives to all the nurses and blowing them kisses, then head banging to the music on the TV. It makes the time in hospital so much easier when he is in good form.

As I said in the last video, I have been breaking. I wasn't losing my faith, I was just losing my focus and I was letting my feelings lead rather than God. Because my feelings clouded everything and I was breaking under the weight of all that was happening, there were moments when I couldn't understand or see God in any of it. I'm so ashamed to say that now as God is in every single detail, whether I see it or not, and He never fails or leaves us. There have been and will be so many things I'll never understand, but that's what faith is. Trusting a faithful God with an unknown situation and future. Trusting Him fully with Henry and what's ahead. God goes before us in all of this and prepares the way. His way. His timing. There were a lot of important lessons throughout the last week or so, and I know God is shaping us and preparing us for the next stages, that I know will be even more difficult and challenging. God is training us and showing us more and more so we learn to lean in to Him even closer.

Henry went for his CT scan yesterday morning and thankfully he was first on the list again, so he didn't have to fast for too long. I was still not allowed to take him down to theatre, and this time he had a bit of a meltdown when they carried him away. It truly is the worst feeling ever when your child is reaching for you with tears in their eyes and you not being able to do anything about it. But I reminded myself that even when I can't hold him and comfort him, God can and will. God is holding Henry throughout all of this and is protecting him and keeping him strong. And in those moments when I am holding my son, God is holding all of us.

The scan is a very short procedure and Henry was only out of the ward for an hour. He settled back very well as per usual, drinking his bottle and eating his cereal. After some further obs he was able to go home for the afternoon. He had a great day at home, eating and drinking well, having fun with all his toys on the sofa and before we knew it, it was time to head back to the hospital.

When we arrived the nurse had mentioned the scan report was in, but they don't know what it says and it would be the doctor that would tell me about it the next day. Talk about frustrating lol. Knowing someone out there knew what the scan said and having to wait to hear was rather agonising! Thankfully Henry settled to sleep earlier than other nights and let me get some more sleep too.

So today was the day! Henry's meds were connected up as usual, we had breakfast and continued the wait. I was trying so hard to not let my thoughts race about the place. They were darting to various scenarios and outcomes but I pulled the brakes on them. I began to tell myself that it's out of my control. Only God is in control. I'm called to be still, let go, and trust.

The doctor walked past the window and it honestly felt like everything went slow motion as my heart raced and I prepared myself to hear the news.

It wasn't the news we had all hoped for.

The scan had showed slight improvement, but not as much as there had been before. It had certainly not worsened though, which we will be thankful for! But it did show a pocket of fluid in his lungs near his heart which they are not sure of. Looking back at previous scans, it was there too, but the doctors must have assumed it was part of the infection and this medication would treat it. But it is still there. So they wanted Henry to have another heart scan this morning to get a closer look at it. Then they will share it all with Bristol and see what they recommend. It's perhaps the JMML showing, as the medication is not working as well as it was before. We also heard that Bristol don't want to delay much longer and are keen to start the transplant soon. They will obviously keep a very close eye on what these lesions and pockets are in his chest, but if it's the JMML at least the transplant will treat them.

So for now we are just waiting on what they advise and continuing with the current infusions at the hospital until we are told otherwise. One thing that was mentioned earlier that really stood out was that we could possibly be going to Bristol not this weekend but the weekend after. Although I'm not taking their word for it just yet until they tell me for certain!

I've mixed emotions about this to be honest. I'm really concerned about the pocket of fluid but I know the right people are looking at it and they will know how best to act and how to proceed. If the teams feel Henry is strong enough for the transplant, then we will trust them and God and go with it. I'm happier now than I was last week as Henry's health is back and he's eating well again. I also feel stronger in my faith this week, even though we are facing this huge mountain and more uncertainty. I have a certain God who never fails. There will be tougher moments, of that I'm sure of, but I know God will be right beside us every step of the way. We will start to prepare things for going to Bristol soon, but the most important thing we can prepare is our hearts, and ensure they are aligned with God's.

I'll update you all when I know more information about the scans and a date for Bristol. In the meantime, please join us and give thanks for all that God has done so far, and pray for continued healing and strength for us all.


bottom of page