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CT scan tomorrow and some ear trouble!

It’s confirmed that Henry is going for his CT scan tomorrow morning and hopefully his bone marrow biopsy while under anaesthetic. The last few days have been tough, Henry now has some ear trouble!

After being on this medicine, voriconazole infused through his lines, tomorrow it’s time for his CT scan to see if this medicine has made any changes to the lesions so we know what our next steps are. I mentioned in my last video update about this fungal infection being the doctors best guess. Tomorrow will hopefully confirm all of this, however there’s a few possible outcomes. It could either show the medicine has worked and the lesions are reducing in size or going away, or no improvements have been made at all. If there are no changes, it either means we need to be on this medicine for longer, meaning a longer period of time at hospital, or it’s the JMML. However I don’t think Bristol will risk going through with the transplant without being completely certain, and even though it’ll lengthen this journey we are on, I’m still so thankful they are not wanting to put Henry’s life at further risk and all these checks are happening. The main thing is Henry has remained so stable through it all, allowing the medical teams to treat all this in the best way they can. I know God has been in it all and has held Henry so close.

The last few days have been tough. I think exhaustion is kicking in more and that’s when I feel the enemy attack most. I’m more isolated and my thoughts grow dark. Being in the hospital is tough. Once Henry goes to sleep it’s very quiet in this room. I often go to sleep myself, or I sit up and wait for his machine to beep meaning the meds are finished, just incase he wakes up. In this time though, I have a choice to make. I can either give the enemy a foot hold, and become consumed with fear and dark thoughts. It’s happened before and it’s horrible. Or, I can be still. I can read and watch things that shout about how faithful our God is. How He keeps His promises. How he never leaves us. How He is holding and carrying us through this storm. What breaks our hearts breaks His too, and I am so much more aware of the value and love He places in each of us. We are all His children and He will never give us more than we can handle. But He reminds me that we were not made to carry the pains of life alone. We were never guaranteed a pain free life, and I’ve learned that whatever pain we experience has a purpose. God will always turn it around for good. These are the truths I remind myself when this hospital room gets quiet and lonely. If I could I would shout them out loud, but then I would have a grumpy Henry. But when these truths are my focus, peace consumes me. I feel at home. I feel God filling this room with His presence. The enemy has been overcome and I refuse to give him any space in my thoughts. Sure, I’m not perfect, I will slip up and be slower at focusing on God in the darkest moments. But I have a perfect God who has a perfect love for me and my family. I am His. David and Henry are His. And that is where my focus will always land.

Yesterday was one of those days I was a bit slower to focus, and I allowed my thoughts to wander to weird places. I was exhausted. But I was also feeling and wanting to scream ‘when will this stop?!’... Late last week Henry scratched his ear while he was sleeping. It’s the ear he always rubs when he is sleepy, so at first I didn’t think much of it and just thought it was a scratch that would heal. But this scratch turned in to a large cut and became infected. The nurses took swabs just to check it wasn’t fungal and linked to anything else he has. We were given cream to put on his ear three times a day, and then another medicine to give to him orally four times a day to fight the infection. I was crushed by it all. My little boys body being pumped with so much medicine, I just felt it was too much. But I have to still give thanks. I’m thankful this medicine exists. I’m thankful that Henry doesn’t let any of it phase him. He is a true warrior, and all of this shifts my perspective. If my son can handle this and get through it, then so can I, with God walking us through it.

His ear is looking a lot better than it was, and we were just told tonight we can stop the cream, yay! So now it’s just a wait until the scan tomorrow. Henry is first on the theatre list which is great! He will get his meds as usual in the morning and hopefully the scan goes well. It may take a day or two for the results to come back, but I ask for you all to stand with us and pray to our faithful God. Let’s ask God to heal Henry. I ask for no lesions to show in his chest. I boldly ask for his bloods to show as normal and no more blasts or abnormal cells showing. Our God can do miracles. He can move mountains and silence storms. I give thanks for all that He has done up until now but I ask, with tears in my eyes for my son to be healed completely.

I’ve said all along and I know it’s Gods will and way throughout all of this. I know that He is calling me to let go and trust. If this journey has to continue and Henry is to be healed through treatment we will go. We will obey and go through the storm while continuing to shine God’s light in the dark. We want lives to be saved. Not just Henry’s, but all the people we have met and will meet and encounter. God will do great things.

I will let you all know when we get the results from the scan and biopsy. I am so thankful for all of you supporting us and praying for Henry. I feel so overwhelmed by the messages being sent and I will try to reply you all, sometimes it’s just hard to get the time and energy to. But I do read them all and they are such a blessing to us. I love you all and I pray you are all safe and well.


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