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In the middle of the mystery

Sorry I haven’t been posting blogs lately, things have been a bit manic adjusting to a new reality of hospital trips and new levels of exhaustion. This last week has been tough in terms of adjusting, but we are remaining focused on God and know He is at work.

I had posted a couple of video updates explaining what has been going on, but I’ll give a brief summary here incase anyone missed them! Obviously Bristol was cancelled due to Henry having a rare fungal infection called fusarium. We are so thankful this was spotted before we travelled and Henry started conditioning for the transplant. The outcome could have been devastating as we may have lost him. I give thanks that all these tests exist and are carried out. It took us a bit of time to process that Bristol was postponed and we are now in a battle that we didn’t think we would be in.

Henry is now on a new medication to fight this infection, and we are taking trips to the hospital for this to be infused through his lines. It’s a long process, the medication takes 2-3 hours to infuse, then an hour flush afterwards. He needs it twice a day with 10-12 hours between each. So our routine has changed a good bit. We have been driving to the hospital every evening at about 7:30 so Henry can get the medication started around 8:30. Amazingly he settles so well in the room and doesn’t often wake for the nurses when they are putting the flush on or taking the lines down. It usually finishes shortly after midnight and Henry sleeps through til the morning. The first few nights he was wanting to party in the middle of the night, but he is way more settled now thankfully! Then in the morning at about 7:30 he gets his bloods taken and the medication infused again.

Initially we thought he would need to stay in hospital, but we are actually allowed home with him during the day for a break which helps us so much. It lets us rest if Henry has had a tough night, and it lets us all be together for a bit.

Henry has been doing so so well through this already, although this seems to be confusing the doctors! Usually with this infection there would be symptoms like fevers, sickness, tiredness etc, but not Henry. He is getting on as normal, his usual happy self. His strength is amazing and he is now more settled with the hospital environment, the nurses and doctors, the PPE and even getting his obs done! It’s not usually the thing you want your child to get used to, but remembering what’s ahead in Bristol we are thankful he is settled with it all as it will make it easier hopefully. We are aware that Bristol will be so much harder, but we remain thankful for how Henry is keeping now. He is definitely a fighter.

As part of the checks, Henry had his eyes tested, an Ecco (heart scan) and an ultrasound earlier this week to check that the fungus hasn’t spread and I’m glad to say it hasn’t! Praise God!

Unfortunately, as I mentioned in the previous video update, Bristol didn’t give the green light for the medication being changed to allow us to give it to Henry orally at home. They want to see significant improvements before deciding this. However that’s more difficult as he is not showing any symptoms, so the only way to check this is another CT scan the week commencing 1st June. This will hopefully show that the lesions they are seeing have reduced in size or totally disappeared. Please pray!! Although I’m not entirely sure what will be decided if there is no change. The doctor said yesterday it could be the JMML too, so confusing! Henry is a little mystery! But I don’t want to think too far ahead. Please pray that the medication does the job and this infection goes away. Please pray that they don’t need to investigate further with a more intrusive method, there was talk of flushing his lungs again but I really don’t want that happening.

I mentioned in some video updates about numerous questions racing around my mind since hearing of Henry’s recent blood levels. When Henry was diagnosed his white blood cell count was 90. For Henry’s condition they usually sit around 40-50. This week they are at 20, and I think normal is between 10 and 15. This just confuses me so much. But I know it’s God at work cause Henry hasn’t been on any specific treatment for JMML. The only medical cure is the bone marrow transplant. However the medical teams are confused. They say there is clear evidence that he has JMML though, but I suggested doing another bone marrow biopsy while he is under anaesthetic for the scan, just to really see what the bone marrow is doing as this ia what the transplant is for. I know I’ll never have the knowledge the doctors have about all of this, but I just want to feel more confident about it all and understand as much as I can. So please pray for this scan and biopsy. I am praying so boldly that it shows nothing. No infection or JMML. God is capable of the impossible, and I am believing and trusting for a miracle.

We as a family have been completely overwhelmed by all the prayers, messages, love and gifts we have been receiving. Some of the gifts have been anonymous which I absolutely adore but I wish I could thank you directly! Our church has been an amazing support, family and friends and our amazing prayer warrior group. You are all such an amazing blessing to us and having you in our lives gives us strength and joy. I honestly believe there have been real kingdom friendships started and I’m so so thankful.

I’m gonna be very real here. This last week has been so so tough. My heart is broken. I beg and pray to God every night at Henry’s cot that Henry would be healed. I’ve cried so many tears, I’ve shouted so many questions, mostly filled with confusion and anger, and I’ve poured out my heart. I just don’t understand why all this is happening. I can’t make sense of it. We were so ready and willing for Bristol, but instead we have to go through this storm first. I don’t know why my son, an innocent young boy, has to endure all of this. So much of our lives have been on pause now, and sometimes the selfish side of me comes out and I just want things back to the way they were before the diagnosis. I look at other families, and I’m not saying this to make anyone feel bad or anything, I’m just being real with my feelings. But I look at other families and for a brief moment, I want that. I want normal. I want joy. I want peace. I want my son to be healthy and all of us to be at home together making memories. I know that very few of us have normal lives and we are all fighting our own battles, whether we show it or not. But we want to be able to go out and about, go to the park, go for walks, and not feel this heavy weight of what’s ahead anymore.

But then I hear God and get a glimpse of His heart and His calling on us. He doesn’t want us to be normal. He wants us to be difference makers. He didn’t cause all of this to happen, yet He listens to and feels my anger when I shout at Him and He takes it off me. It‘s not just our hearts breaking through this. God‘s heart is breaking too. He never leaves us and never will. He is walking and carrying us through these storms and turning every circumstance around for good. He is at work every moment, even when we don’t see or feel it. Yeah sure, I get moments of anger and beg that enough good work has been done so my son can be healed. But there‘s so much more to come from this. This journey is saving lives and touching hearts, and it’s God working through us and shining a light in the darkest moments for people to see. I do get some really low moments, especially at night and more so now that I’m not with David at home, but there’s opportunity to lean in to God closer and learn more about His heart, and the purpose for all of this.

I’ve always said I want God to be seen through this. And I keep reminding myself that God has chosen me and David to be Henry’s parents. What a privilege. God chose us, knowing the plans and journey we would be on. He has such a purpose for it all, and I’m believing no matter how hard or dark it gets, God will get us through it and there will be so much goodness and joy flowing from it.

It’s a very strange wrestle when you are going through this and watching your son hooked up to medication and remembering he has blood cancer. It hurts. The pain is very real and continuous. It becomes your life. It’s the new normal. But then I think of all the goodness God will bring out of it, and align my heart with His, and joy takes over and I feel a huge amount of peace. God is in control. God is teaching me to let go. To focus on Him and His plans for Henry. There is a great purpose for Henry‘s life.

I said before that I look at other families and I want that. I want normal. But in this last week I’ve realised I want God and His plans for us even more. I don’t remember life before all of this, and I know I’ll never be the same again. But I’m glad of that. I truly believe through this dark season, God has awakened me. God has revealed so much to me and because of this I trust Him completely with my life, and Henry’s life. I don’t want to go back to my lukewarm life of just drifting along and settling. I want to step in to God’s purpose for my life and watch how He works in Henry and watch the plans of his life unfold. My prayer is that through this more life’s will be awakened, and we will be forever changed because God has started a work.

Greater things are yet to come.

I’ll raise a hallelujah in the middle of the mystery.


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