Over the last few days I've been surrounding myself with music, online sermons and articles that have reminded me, even more, how great our God is, and that the seasons of pain we experience actually have a purpose. We also got some good news at the hospital today... so wanted to share it all with you!
Firstly...
Thank you so much for all the messages and prayers. I know I always say it, but that's because I can't actually thank you all enough. It really lifts us in our spirits and feeling connected helps so much right now. It really touches my heart to know so many are holding Henry up in prayer and are asking about him, people who I have never met before! The kindness just floors me every time and I'm so thankful that through this journey already, we have connected with so many people and have gained such amazing friendships. You are all so amazing and we thank God for you! May He bless you all so much!
Hospital Today
We headed to hospital today again for Henry's daily meds, and I think God was teaching me again about my need to control (facepalm)... Things didn't go exactly how I wanted. Things took a bit longer than usual. I let myself get uptight, but I realised sooner and tried to handle it a bit quicker! I know it won't be a switch for me to stop being a control freak lol, but I'm a work in progress! I need to focus my thoughts on the bigger picture sooner, there are so many other sick children in that ward who need the nurses attention as well as Henry. I need to realise that there are other people that need cared for and the nurses can't split themselves in two, or three, or four! But I will get there, slowly... promise! (I'll need to buy them all a big tub of chocolates or something, bet they think I'm a nightmare parent lol!)
Me and David have to wear masks in and out of the hospital now, something Henry seems to find amusing, but at least it gets him used to them as he freaked out when he was surrounded by nurses with masks on! On the way in, I passed his doctors who were able to tell me the first bit of good news! They mentioned that on first investigation of the sample they took from his lung during the bronchoscopy last week it seems he does not have a bacterial infection! Praise God! So we only have to give him that antibiotic for another 5 days then he can stop it. Now, there is still the question mark over the fungal infection, as this takes longer to be tested/investigated, and Henry will keep taking the antibiotic for this up until Bristol. Previously the Belfast team did say it doesn't look fungal, so I'm holding on to that hope and praying that all they are seeing in Henry's chest is the JMML. We don't want any further hiccups or delays. I do wrestle with Bristol, wanting it to happen now, then not wanting to face the storm of it yet. But bottom line is I want my son healed as soon as possible, and if that means through transplant, then let's do it! Although I still believe there is a greater reason for this delay and it's not just the medical reasons. God wants to teach us more before it all starts. We need to prepare our hearts more and align ourselves with God.
So Henry got his meds and he is still coping so well with it all. He stays on the bed, watching Raa Raa and throwing his toys about. Then lunch comes in and he goes hyper! A lovely nurse came in to chat to me and she explained that the community nurses would be getting trained tomorrow in using the pump that Henry gets his meds through. We chatted about the home visits and we were told yesterday that they could come out 3 days a week which was amazing! This means Henry won't be exposed to the virus as much. She said she would sort out the prescriptions and the supplies we need to have at the house for these visits, and once Henry's lines were all sorted we were all set for home. The nurse said she would hope to get the supplies to us tonight, and she did! All the bags arrived and she floored me with more good news. They are able to come out to us 5 days a week meaning we would only need to be at the hospital at weekends. Praise God again!! This limits the risk of Henry getting the virus even more and I am beyond thankful! They are coming out tomorrow for the first home visit so praying all goes well and Henry settles as well as he has done up until now (toys may be a distraction and he may want to run about as he's at home!)...
We also haven't heard the doctors voicing any further concerns about his blood levels, so we are remaining thankful that he is staying stable with those, but we are acknowledging that it's God at work. He has been in EVERY single detail of this and will remain to be.
Bristol
We received a letter today from the consultant in Bristol. It was really a letter to our GP but we were copied in to it which is great as we can have all the information about Henry's treatment and their assessment of him. There was some further information about his donor match which we were overjoyed at. We knew the first donor match we found was a 12/12, but unfortunately they couldn't be used as they were going through another procedure at the time. But it seems this donor is a better match than we originally hoped, well, that is if we understand the letter lol! It says they are from Germany, and it states 10/10 (11/12)... so this appears to mean that they are 11/12 match! So we are praying they are a better match than we had hoped and it'll be a more successful transplant for Henry! However, a 10/10 match is still amazing, and I cast my mind to those people still looking for their donor match and I pray so much that they find theirs as soon as possible. We are so thankful Henry found his so easily, but there's so many who don't. Please hold those people up in prayer.
Pain has purpose
Ok, so no one likes feeling pain. I can hold my both hands up high and say I really don't like pain. But unfortunately, we are not guaranteed a pain free life. I'm pretty sure everyone experiences it throughout life to some extent. When Henry was diagnosed I often question God about it all. Why is this happening to my little son? Why is this happening to us as his parents? Why does Henry have to suffer through this treatment? Is there no other way? All the typical questions I'm sure. But thankfully, through a lot of conversations with God, I am at a place now that I know this JMML condition is not of God. He didn't give Henry this. It's not punishment for something we did or didn't do. It's just the nature of the world we live in. There is sickness, pain and darkness throughout the world. But there is also a faithful God, an amazing Father, who is full of love, kindness and light, who we can run to and cry out to for help in these dark seasons. And He never leaves us. He is always there waiting for us. He fulfils his promises every time. But only in His own timing. And His timing is perfect.
God has been teaching me, through the ways He knows I will get (He created me after all!)... and the other night I clicked on Craig Groeschel's recent church message 'There is a reason'. I really feel like I was meant to listen to this at that particular moment. My head was in a weird place as we were meant to be in Bristol and I was unsettled. But what Craig shared really focused my mind on things above, and fired me up for what God is going to do through this season He is carrying us in.
I've always believed God turns everything around for good, and uses every circumstance and experience to save lives. There is a purpose for everything, including pain. Henry's diagnosis and treatment has a purpose. As much as I hate the thought of Henry experiencing any pain, I believe that it will serve a greater purpose, and God has such a calling on his life. Already in Henry's life he has touched so many people and I am always praying that through all this, already, lives will be saved. But I also believe Henry will continue saving lives after his healing. This treatment is only temporary and we will get through it with God.
“And we know that all things work together for good to those who love God, to those who are the called according to His purpose.” Romans 8:28
Craig mentions that sometimes God's preparation comes packaged as pain. Through this pain God is doing a work in us, before He can do a work through us. We need to change our perspective when going through this pain so that we can see the purpose in it before the pain itself consumes us. So I'm holding on to this truth. We will experience pain on a scale we haven't felt before, but God is holding us every step of the way, and I will remind myself of the finish line and the victory. Great works will come from this season in our lives and I can't wait to see what God is going to do through it and through us.
I have shared the message below... it is so so good! And I really believe someone else reading this will benefit from listening to this, just as I did.
Prayer Points
Give thanks for the home visits happening, that there doesn't seem to be a bacterial infection in Henry's chest, and the donor match is better than we thought!
Henry continues to stay stable and responds well to treatment.
We can rest and switch off more now that we don't have to go to hospital every day.
Protection over the medical teams and those workers on the front line.
Lives continue to be touched throughout Henry's journey and seeds are planted that God can start work on.
We remember to enjoy ourselves and have fun as a family regardless of the storm ahead.
All the preparations for Bristol go well according to God's plan.
Thankful for the work God is doing in us through this. He is moving us out of our comfort zones (including me doing video updates!!) which we need to do.