It is now BMT Plus 14 and things have been going well. At Day Plus 10 Anabelle’s Neutrophils finally hit zero which meant that she now no longer had an immune system.  Her Neutrophils should start rising at about BMT Plus 21 days, which would then show that the engraftment is working. (Fingers, toes and everything else crossed).

She has now developed Mucasistis and is suffering from a sore mouth and it is also affecting her digestive tract right down to having a sore bum. The experts from Tissue Viability came up and provided some silicone based cream to apply to her bum instead of the 50/50 we have been using. She is also now on morphine to help with the pain and it is doing a great job at keeping it at bay. (She’s not sharing it though!!!). Although we had shaved her head it actually started growing back and we were actually wondering whether we were premature in doing this. However it is now falling out quite quickly with the evidence all over her bed.

We have been having a few visitors to come up and help relieve the boredom.  Through a mixture of the play specialist, nurses and volunteers we have been able to get out for a bit. The Play Specialist (who is invaluable) got Anabelle a puppet and they are now inseparable, she has it with her all the time except at Bath time. Bath times have drastically improved with her and she no longer screams the room down when being bathed but likes to sit there and splash around with her ducks and leaving the room in a wet state.  Her general temperament has improved the longer we have been here and when she’s not sleeping she likes to cruise around the cot dancing with the radio on. We make idiots of ourselves by dancing around with her!!! When people walk past the window she gives them a massive smile and brightens up their day.  Some people actually walk past just to get a smile out of her. Even when the nurses need to carry out their observations she now holds her arm out waiting for her blood pressure to be taken!! The only thing she isn’t a massive fan of is the mouth swabs and we have to pin her down to carry those out. We have also had visits from the Music Therapist and Speech Therapist. Her signing has developed and would put Mr Tumble to shame!!!

Her levels are being constantly measured and a couple of times her blood and platelet counts have dropped. She therefore has had to have additional transfusions to counteract this. Again nothing to be concerned as the experts here have got it under control. The Doctors and Specialists are very pleased with her progress.  


Two hoodies together!!

The other day we had a bit of a scare as we had been advised that her test (she is constantly being tested for bugs and nasties as she has no immune system) had come back positive for Paraflu. The Analyst wasn’t happy with the sample though and feared it may have been contaminated.  So a further test was done. As a matter of precaution whilst we were waiting for the second results to come back anybody that would come into our room had to wear a mask. We felt as though a red cross had been painted over our door!!! If the second test had come back positive it would have meant additional treatment, moving rooms and Anabelle having to sit in a tent for 6 hours. Fortunately it came back negative. We breathed a sigh of relief at that one but it also made us realise that things can change quite quickly when she is in this fragile state. We are however constantly amazed as to how well she is coping and very rarely crying throughout this journey which is more than most people have to face in a lifetime.