So we've been home for over a week now and I'll be honest, it still feels very strange! As thankful as we are that we are back home, the exhaustion levels feel like they are only properly hitting now, and all the emotions that come with it.
Firstly, Henry has been doing really well since coming back home. His form is great and he's wanting to walk around more and more, something I was nervous about as he was in bed in hospital for so long. But he has truly amazed us, and so many other people.
We are still going up to the hospital every Monday and Thursday morning to get his bloods checked and his obs done. So far they have remained stable. They are not where they should be but are definitely heading in the right direction. So thankful for this! They decided to stop the steroids completely as he has been on them for a long time now and they bring their own side effects. He started these when he started developing graft-versus-host disease in Bristol and they worked so well to keep that sorted. Although since being off them, he hasn't been totally the same. He hasn't shown any initial signs of the disease coming back, but his appetite and fluid intake have decreased a fair bit, and his sleeping has been a lot more unsettled. To keep his fluids up we have been advised to give him more water through his NG tube as he is not as fussed on his bottle or juice.
We were getting a bit concerned, more so due to feeling more isolated and not having a medical team as close by as when we were in Bristol. Today we spoke with the doctor and nurses about how he has been, and they reassured us that it's typical behaviour when coming off the steroids, so they didn't seem too alarmed which reassured me. They still think he is doing and looking amazing, so this gives me peace. It will all just take time, and as exhausting as it is, we give thanks that he is still doing so well after the treatment he has been through. God is still very much at work and protecting us all.
As much as we are feeling thankful for Henry getting through his treatment so well, I can't stop thinking about the families and the other children still on the ward going through their treatment. It truly felt like a wider family there, filled with the bravest people I've ever seen, especially the kids. My emotions have been all over the place in the last few days. Perhaps caused by the exhaustion, but I get waves of saddness, joy, guilt, gratitude, fear... it's a very weird space to be in. I feel sad that childhood cancer is so common and so many kids go through the worst treatments. Even though the treatments are there to help, it's so hard on them at such young ages. Then I feel joy. Such a deep joy that Henry got through it so well and at an age that he won't remember the pain (at least I pray so, always)... then there's huge waves of guilt. This is one I wrestle with a lot. I want to shout about my son and how well he is doing, and I do, but then I feel like I shouldn't too loudly cause there's other parents out there who have lost their precious little ones. The wrestle is, I feel I have to shout about God's good work. He has been so faithful this entire journey, and when I think of all He has done for us and all he has brought us through, I just want to burst and shout with joy. We went through those dark times, when I had the worst thoughts like I was going to lose my son, but God poured His light and love in to the situation and circumstances, in to my thoughts and heart... and He brought us through like He promised. This is when I feel complete gratitude. God truly is the God of miracles.
But lately, fear has been creeping in again. And I know God doesn't give us a spirit of fear. It does creep in when I take my eyes off God for a split second. And it's the fear of anything else happening to Henry. It hasn't been long since his transplant, and I guess being away from Bristol has let the fear set in a bit, then the exhaustion levels have heightened it. I remember hearing what the other families on the ward have went through with their kids, so many have relapsed and had to go through treatment again. But I keep reminding myself that Henry's condition was different, every kid is different, and as much as I continue to pray for the other kids, I pray so boldly that Henry remains healed after this. I ask you to continue to pray with us. And to also pray that we keep our focus on God and praise Him until the fears are silenced. We will keep trusting.
It's so strange being back home and being on the other side of Bristol after waiting for it to happen for so long. It will take a while for it to sink in and life to get back to some type of normal. They are saying he could be on these medications for 6 months post transplant which brings us up to January. Please keep praying that Henry remains stable and his blood counts start coming back up to normal. I'll keep you all updated when I can. These last few days have been exhausting so I will continue to try and blog weekly.
For now, I want to leave you with a verse and a song I've been focusing on when I feel my thoughts straying...
For you are my high fortress, where I’m kept safe. You are to me a stronghold of salvation. When you deliver me out of this peril, it will bring glory to your name. As you guide me forth I’ll be kept safe from the hidden snares of the enemy— the secret traps that lie before me— for you have become my rock of strength. Into your hands I now entrust my spirit. O Lord, the God of faithfulness, you have rescued and redeemed me.
Psalm 31:3-5
