Hello everyone, sorry it’s been a really hectic few days which is why no updates. Ada’s tests have shown no major bugs yet and fever and heart rate is mostly under control which is very positive🌞 She’s doing well after her transfusion two days ago, our little vampire🧛♀️She is struggling with quite painful mucositis and a lower GI prolapse (the breakdown of the mucous membranes and lining of the whole gastrointestinal tract).
I won’t go into detail but to use my trademark phrase, her innards are literally becoming outtards, which makes every nappy change a two-man job and takes up most of the day, which is why we have been so quiet. We are managing her pain well at this stage, and the pain team are on board if necessary. We will be in hospital over the weekend and if all goes well will have the stem cell harvest next week, provisionally Tue, Wed and Thu, with the dreaded cycle 3 starting the week after.