Bristol Postponed

I actually can't believe I'm typing this. We were all packed up ready to go tomorrow. We were mentally prepared and all the final phone calls were made today to organise everything and to say 'see you soon' to family. But just as we were having our dinner, the doctor phoned, and everything changed.



So yeah, where do I start? I'm sitting here with such mixed emotions and I'm not sure if my mind knows where to rest and settle! Henry got his daily meds this morning early, giving us a good block of time to get the final packing sorted so we could sit tonight and have some downtime before going to Bristol tomorrow. Some of my family came by earlier, at a distance, to see us before we headed off. Then we packed a bit more, sorted a wee shopping list out for the lovely house manager of Clic House so we would have some stuff there for the weekend. We all sat down for dinner and then David's phone rang. It was the doctor.


After hearing what she said, I'm glad she phoned David, cause he reacted calmly whereas I would have flipped. Henry's CT scan results came back, and the tests from the bronchoscopy have also shown that he has a rare fungal infection. The medication, ambisone, that he is on every day hasn't sorted this, so they need to put him on a different medication now to see if it can sort this infection once and for all. Bristol, and our medical team here, are now postponing the transplant. This has now been delayed three times which is madness. But, I am beyond thankful even more this time. If this was not identified now, and he went through any part of the conditioning period (including chemotherapy) we could have lost him. I am giving so much thanks to God and the medical team for seeing this and making this decision. Also, I'm thankful that we found out now while we are still at home, and not after we travelled cause we would have to do the new medicine and more waiting in Bristol. He will be on this new medication for a few weeks then another CT scan will happen to check if it's been successful or not, then we will know when transplant will happen.


Ok, I am only human... initially I reacted badly. I was an emotional mess. I was angry, confused, scared, worried... but underneath oddly relieved. Then the positives started coming to light more, and joy started taking over. All this time Henry was sitting next to me having his dinner, and he started dancing which filled me with more joy. I could have lost him if we went ahead not knowing this. Then all I could do was cry, not knowing if it was relief, joy, still confusion, exhaustion. All I could do was phone my social worker and family. So many mixed emotions from them too, but they all see why this is actually such good news.


So we are heading to hospital tomorrow morning at 10am to chat with the doctor and discuss the medication, and I assume start it. So please pray this all goes well and Henry doesn't react badly to it.


Also, David asked the doctor on the phone about Henry's JMML and his blood counts. We haven't heard too much about these as it was left they would call us if there was anything concerning. The doctor said Henry's white cell count was in the low 20's last week. WHAT?! They have never been that low! Last we knew they were high 30's. So WOW! God is definitely at work! I ask you to pray boldly that these continue to drop, and let's be so bold in praying for healing before any treatment! The power of prayer is an amazing thing, and God can do miracles! I think the doctor also wants to do another bone marrow biopsy to see what his blood is doing. He hasn't had one of these for a while so I'm curious to find out in more detail what's happening. But let's keep praying!


We are sitting here totally exhausted, Henry is in bed sleeping thankfully. So we are going to kick back, stuff our faces with bad food, and thank God for all He has done and will do. He is truly in control and I'm in awe of His goodness. I will keep you all updated as we find out more, but your messages today and continued prayers and support always overwhelm me. I love you all. Sending virtual hugs!