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.
Today we had a very helpful appointment with the Prof in charge of his treatment. He has spoken to his colleagues overseas who deal a lot with paediatric leukemia, and gone through James's case with them. They said that their practice is to continue the Methotrexate in spite of the raised liver function tests, but to keep monitoring the liver closely. They would only consider stopping if the Bilirubin levels go up (James's have never been a problem) or if the liver becomes enlarged (James has so far had no sign of this). In their experience, in every patient they've had with these liver symptoms, after the treatment is finished the tests go back to normal.
In the near future this means James will:
- have his liver tests monitored every second week (along with his normal blood tests)
- see his paediatrician every two weeks instead of once a month
- have an ultrasound every two months or so
- go back onto Methotrexate, and they will gradually increase the dose to the normal levels
This is good news for us because the alternative of dropping the Methotrexate would have definitely increased James's risk of relapsing. So we are grateful. However, it is likely that James will have to deal with ongoing nausea and tiredness if his liver keeps on as it has been, which has been very difficult to deal with. His eating has improved considerably with being off the Methotrexate this last few weeks. The prospect of him being nauseous and struggling to eat for the next two years is quite scary!
Last month James also went to see a specialist at the Sports Science Institute on Prof's recommendation, to see if there's anything more to be done about his leg pains and falling which continues to happen intermittently. He was incredibly excited because he met someone who trains with the Stormers rugby team. This doctor in turn referred us to a physio who happens to be a friend of ours from hospital! She and her colleague assessed James and said that he has good co-ordination and muscles except that he has low muscle tone in the core (trunk, shoulders and thighs). So her colleague's going to come to our house and help us with exercises etc that could help him.
