The treatment we have been dreading was upon us. Romy didnt know it but this was the most toxic yet, and came with a long list of side effects both short and long term. Without her stem cells being returned to her after the high dose chemo her body would not survive the toxicity of the treatment. Even with the Stem Cell return, the treatment carried up to 5% risk to life. The week of the high dose chemo itself was actually ironically quite a nice week in some respects. The only difficulty during this week was some nasty side effects emotionally of a drug normally used for epilepsy that Romy needed to prevent seizures. A steroid to prevent nausea, dexamethasone, also gave Romy awful episodes of aggression and we abandoned it after one dose in favour of alternative anti-sickness medication. On the plus side however, one dose of dex gave Romy an appetite she hasn’t had for the whole 8 months so far. She ate for a whole week like we haven’t seen her eat the whole time, and I can’t quite believe I look back so fondly on that week where the most toxic drugs were being infused into her little body every day. I hadn’t realised how happy seeing your child eat food again could make you feel. After four days of Busulfan chemotherapy being infused, a 15 minute infusion of Melphalan concluded the high dose chemo. It sounds very simple, but the whole week followed a careful schedule of stopping and starting hydration fluids, starting prophylactic medication and administering the chemotherapy at very specific times.
Helen & Tom
