I posted a short video update yesterday saying how the doctor mentioned that when she looked at the scan she could see slight improvements, but had to wait for the final report to confirm it all. Well, earlier today we heard the final report, and we must give thanks!
Henry had his CT scan and bone marrow biopsy on Wednesday and it all went to plan. He fasted from midnight and I prayed that he would go to theatre first thing in the morning. My prayer was answered. He went to theatre at 9:10am after signing some consent forms and hiding anything drinkable and edible! The policies are still in place due to Covid that I couldn't take Henry down to theatre, so the nurses came to get him in full PPE. This always breaks me, and I think it would break any parent. Seeing your child being carried off to go to theatre, not being able to hold their hand and comfort them while they go to sleep, or being there when they wake up. But amazingly, Henry didn't cry when being carried, and the nurse said he didn't cry at all on the way. Thankfully it was only me who cried! But I'm so thankful for the team of nurses on the ward who checked on me and made sure I was ok. We have been at the hospital so long now, the nurses feel like extended family to me now. I admire all that they do and I adore how they are with Henry.
The scan and biopsy didn't take long at all. A nurse came to tell me about half an hour later that Henry was moved to recovery. He stayed there for a while as he was exhausted. Another half an hour or so he was back in the ward with me and it didn't take long for him to come around after a bottle and some Rice Krispies!
The doctor wanted a few more swabs taken because of the infection he has on his ear, but this is all good and it's healing well with the medication he is on for that. It never really bothered Henry, I think it just looked worse and I'm thankful the medication is working!
So since Wednesday we have been continuing the medication through Henry's lines for the fungal infection and he is still coping so well with it. He has also been sleeping better, meaning I get a good sleep too. But the anxiety of the results was starting to build and I started to prepare myself for hearing that there wasn't any improvement. At least that way I wouldn't be too disappointed. Although every moment I had, I prayed boldly and asked God to heal Henry and bring good news! Well... that's what happened!!
As I mentioned in yesterday's video update, the doctor came to see us and said that she had looked at the scan and her initial report was that there were slight improvements. I then asked if that confirmed that the medication was working and that Henry has this rare fungal infection, fusarium. She said it looks that way, but she said we would need to wait for the final report. I was overjoyed!! I had prepared my mind to hear that there were no changes, and I heard this! Having to wait a bit longer for the full report didn't bother me too much. We are experts at waiting now!
Today brought the confirmation! The doctor came in to see us and said that the team agree with her findings and not only are there slight improvements, but some of the lesions have disappeared! Praise God! He is at work and Henry is being healed of this rare fungal infection! It's still so confusing as Henry hasn't shown any symptons for the infection, but I am believing God has been at work and kept him strong through it all. The bone marrow biopsy also shows that Henry's bloods and JMML are stable which is allowing us this time to fully treat the infection before Bristol happens. I am so so thankful to God and the medical teams! They have now emailed Bristol to report back to them as they are requesting the medication to now be changed so that we can give Henry it at home orally. Please pray for this as it would mean we can all be at home together, get back to our normal routine and have another breather and some normality before Bristol happens! They don't think we will hear back today, but I had assumed it would be Monday anyway as that's when they have their conference calls with them. So we will be continuing the medicine through Henry's lines this weekend and until Bristol agree to change it.
We have actually been coping pretty well with the hospital trips. Over the three weeks we have been doing this, there has only been a few nights that Henry has been unsettled. So we have been getting enough sleep thankfully! He has adapted so well and so quickly to all these changes already. He has totally amazed me! Of course, we would much rather be at home together, but if we are told we need to continue the medication the way we have been, then we know we can handle it. It is also further preparation for Bristol. I know when it comes to the transplant it will be so much harder than what we are dealing with now, but I believe God is easing us in to things and teaching us so much before it all happens.
God has remained so faithful. There have been tough moments and dark nights, but that's when we draw closer and lean on Him, and He always brings comfort and peace. Every night I watch Henry go to sleep and pray. I give thanks to our amazing God for all that He has done. He has blessed me with a son who is teaching me so much about strength, courage and bravery. I've also been blessed with an amazing husband. David has been helping and challenging me on how I see things, changing my perspective so I align my focus on God first. He has also been looking after Henry during the day and allowing me to rest more. I lay on bed or on the sofa and hearing David playing with Henry and the giggles of him, my heart could just burst with joy. I am truly blessed with an amazing wee family.
Then there's you guys! I am so overwhelmed by all the support, prayers, messages, gifts... I could go on. You really are loving us so well and I can't thank you enough. My amazing prayer warriors standing with us through this storm. God is hearing all of our prayers and is truly answering them. I will let you know any further updates regarding any change of medication and what the next steps are. In the meantime give thanks to God for all of this. We will continue to pray for Henry's healing, and keep trusting God every step of the way. His will, His way.