Well, we’re back at last. It’s been a long three weeks and we’re all happy to be back at home with baby James again.
Sophie has recovered well from her operations, she doesn’t seem to be in too much pain anymore although her tummy is still playing up. She’s lost a lot of weight so we’re really trying to get her to eat so that she’s strong enough for the chemo.
Sophie also seems to be a bit more settled now which is a relief to see. She was not her normal happy self after the second operation. Unsurprisingly having two operations so close together took its toll and she became quite scared and wanted to stay in either her pushchair or bed as these were her safe places where no one could hurt her. So it’s been lovely today to see her playing normally and not getting really upset all the time.
At our final meeting on Monday the surgeon was pleased with how well Sophie had recovered and we had the results of the all important AFP (tumour marker) test. Her AFP level was 9 before surgery, 24 two and a half weeks later on the Friday after her second operation and 16 on Monday just gone. When we got the result on Friday we were initially surprised and disappointed because we had wanted it to have dropped below 9 post surgery. However, after we (well Andrew – I was too worried!) thought about it logically it makes sense, as AFP will normally double each week when the chemotherapy has worn off. By the time Sophie had her second operation the chemo had been out of her system for two weeks and we know that there were at least 4 active tumours in her right lung so during those two weeks they would have been growing. When the tumours are shrinking due to treatment (chemo or surgery) the AFP will roughly half each week, so the fact that the AFP dropped by a third on Monday from Friday shows that the surgery has worked as it’s dropped without chemo. We’re hoping it will be around 10-12 by Friday when she’s next tested, then continue to half each week after that until we get as near to zero as possible. We’re now both feeling much more reassured that the operations have been successful.
The next steps now are to meet with Sophie’s oncologist on Monday to talk through how many more cycles of chemo they’re going to do and to find out when the next CT scan will be. Right now though we are focusing on enjoying normal life for a bit.
Ruth and Andrew