After hearing that Bristol is now postponed, we went to the hospital at 10am today to speak to the doctor about treatment and next steps. Another hard hit today and a lot of emotions...
It turns out Henry has a rare fungal infection called fusarium, and for treatment he needs a different drug infused through his lines over a 3 hour period, twice a day, for 8-12 weeks. Yup. Potentially another 3 months for this treatment, then Bristol. Henry had the first dose of this earlier today, but is being admitted over the weekend as he will get the 2nd dose overnight as the time between doses needs to be consistent. So we are heading up shortly for the first overnight. They will then speak with Bristol on Monday to discuss things further. We were told that there may be another way we can give Henry this medicine. They will discuss if they can give it to him orally instead of through the lines as it will be quicker and may mean we can give him it at home perhaps.
So yeah, things have ramped up again. The last 24 hours have been a total rollercoaster and I’m an emotional wreck. When I heard that news today I was totally floored. And as I was still sort of processing everything from yesterday and Bristol being postponed, it hit me so much harder and I must have cried for 2 hours in the car park. I felt so broken and weak. I cried out. Contacted all those close to me who are praying so boldly for Henry. Then I felt the anger and confusion and hurt, and my heart felt like it shattered. I just shouted at God. Asking why mostly. Then ended my rant to Him with ’I guess I’ll never understand... but pain has a purpose.’
I’m still in bits, but remembering to give thanks that this has been discovered and can be treated. The main thing is that Henry gets better. Me and David just need to circle around him and give him so much love. I just pray for complete healing. God can see all that is going on in Henry’s wee body. I pray for God’s hands to touch him and take all of this away. I pray for strength, peace and wisdom. Please lift Henry up in your bold prayers. God can do miracles, and we need one. I’ll remember though, even though it hurts, that it’s God’s will, not mine, and whatever lies ahead, there’s a greater purpose for it. At the moment it’s hard to see, but I’ll just go through one day at a time and lean on our faithful God. It’s a longer wait now, but He’s in the waiting with us.