22 January 2019 Sophie started immunotherapy Monday afternoon and within a few hours was in severe pain. After a long horrible 2 hours, her pain was finally under control. Yesterday and today her pain was well controlled but this evening she became very uncomfortable. She was having trouble breathing and a MET call was made so that ICU staff could rush up to assess her.
The immunotherapy causes fluid to accumulate around her little body and she is working very hard to breathe. They have given her medication to help make her wee out the fluid but her blood pressure is now quite low.
If Sophie's blood pressure continues to drop, she'll be transferred to ICU to be monitored even more closely. Hopefully we have an uneventful night, but either way its going to be a long restless one for this mummy.
23 January 2020 Thankyou everyone for your messages of love and support. We managed to only just avoid ICU. It was a long restless night but after Sophie's dose of immunotherapy finished around 1 or 2am, she slowly improved. The nature of immunotherapy is that it causes issues while its running, but once switched off the issues slowly resolve.
Unfortunately Sophie has to have her 4th and final dose of this cycle of immunotherapy today. It's a necessary evil as its improved neuroblastoma survival rates in recent years. The likelihood is that the same thing will happen as last night so I'm just waiting to see what the oncologist says this morning.