Cycle 4 of Romy’s anti GD2 infusion came and went uneventfully. We enjoyed another pancake day, then at the end of the fourteen day schedule of Retinoic Acid which always follows each GD2 cycle, Romy started to show some signs of something not being right. She occasionally got into a ‘froggy position’ on her belly with her knees right up at each side of her body. This is the position she always used to adopt in the weeks before being diagnosed and seeing this will always be a trigger for us as parents. We then noticed blood and mucous when she passed stools, but there seemed to be no explanation for this. She had no temperature or any other symptoms of anything obvious. The ward took samples to be tested for the standard things they always test for when a child in treatment presents with symptoms, including C-diff. We waited anxiously for any answers, however as Romy displayed no other symptoms of this nasty infection (in fact she merrily sat eating her lunch box while waiting to be seen on the ward and clearly still had a good appetite with no diarrhoea or obvious discomfort) we were all convinced the sample would come back negative for C-diff. In our anxious, constantly hyper-alert minds, this left relapse as the only other potential cause and I felt sick with worry. The following day the lab result came back with a positive result for C-diff, and a flood of relief for us. Before any of this, I never imagined living a life where I could feel so happy to be told my child has C-diff, but the news was wonderful, order was restored once more and I could breathe again. Romy was prescribed ten days of antibiotics and we returned back to the flat ready to start weaning her back onto her medications ready for Cycle 5.
Helen & Tom
