Blog
We've just come back from a wonderful four days in Volmoed, in Hermanus (where we've been before a few times). We caught up on sleep (David has only struggled with sleep for one night out of the last two weeks!), had good time with God, praying and reading Tested by Fire by John Piper (available online as The Hidden Smile of God), which gave us fresh encouragement about God's sovereign purpose... cried, played with James and Charis, made spiders, went for walks, went for a family picnic at a beautiful waterfall, collected fir cones, made a braai and some roaring fires to keep us warm in the evenings, watched movies, looked at the stars (and Venus and Jupiter) and felt very very grateful! We've uploaded some photos of the holiday.
After yesterday's good news that James's bone marrow has been given the all clear, we had an appointment with the Prof who is in charge of James's treatment where we were able to hear more fully about the bone marrow test and analysis. We appreciated that both Prof and James's pediatrician seem to understand how difficult this is for parents emotionally!
Today we heard from James's paediatrician that she got the final report on his bone marrow test - and he's totally clear! The cells that they saw on the previous test turn out under closer scrutiny to be Haematagones, apparently also known as Haemocytoblasts - basically they're immature cells, but they're not cancerous, so he's officially still 100% in remission! They're also not caused by a virus. What a relief it was to hear that news! We'll have our appointment with the Prof tomorrow where we'll be able to discover for more details, but it was nice not to have to wait till then!
James had his bone marrow test yesterday. He was incredible bouncy just before hand, but got knocked out pretty quickly by the anaesthetic!
Last week, James had a bone marrow biopsy, which he has every three months. The hospital called us last Friday to say that they had seen something funny in his bone marrow, from the biopsy and they would like to do more tests. So, on Tuesday he had tests on him for TB of the Bone Marrow, CMV virus and Glandular Fever. The tests have all come back negative and so the doctors have said that they want to do a bigger bone marrow biopsy than usual on James to see what is going on with him. It is tomorrow morning at 8am. We would love some prayer - for peace and grace and healing. We have been trying not to react too much until we know for sure what is going on.
After last week's liver troubles there's been a lot of emotional up and down - waiting to hear whether James could still have the Methotrexate, and pondering the consequences of stopping it (with a risk of relapse) or the potential damage to his liver of continuing it.
Last week James started feeling a bit nauseous around food again, and so we asked them to test his liver condition. (This is after his liver apparently recovering from his two episodes last year). The results showed that his liver is struggling again - this time, only one of the four tests was abnormal, but it was 10 times the normal level. This was apparently a fairly clear indication of drug-related liver problems, and so we were told to not give James his weekly Methotrexate this week and then to test again. Today he was tested and the level that was high has dropped significantly, which seems to strongly indicate that his liver is not handling the Methotrexate.
James had a fantastic first day at school today. A bit nervous (the butterflies in his tummy meant he didn't eat much breakfast), but when we went to fetch him he came running out saying "I love school!" It's the honeymoon phase but it's great to start off so well.
It's been a month of refocusing and recovery...
This last few weeks it's felt as though emotions ranging from joys to griefs have been running hand in hand...