Day +29 and Day +30
What is happening to us to miss yet another days’ blog? SORRY…………………
Well back into it now with a vengeance. The truth is though, that yesterday was not a good day for Ella. She wasn’t well, because of her tummy problems. When Mr Wynn came in the morning he said that, although he is pleased with her blood results etc, he was going to speak to Sally and Damian about her further treatment, as she doesn’t seem to be responding to the steroids she has received so far. The donor cells and her own are still in conflict. When they met, the news he gave them was that he was contemplating flying Ella out to Holland that afternoon, to receive new donor stem cells which would help to calm things down. Why Holland? Because this is a very new field in immunology and the legislation in this country doesn’t allow it to happen. Finally he had requested the cells to be flown over here and they were due to arrive some time today. It was very alarming to hear this news as you can imagine, but after more discussions it became clearer that this treatment, although pioneering, is the next best step for Ella, and Sally and Damian have put their trust in his expertise and his teams’ skill.
Last night came and went in a flurry, which wasn’t helped too much by Ella’s new pain relief, which was a morphine pump which she controlled herself. Ella managed very well during the day, but during the night, when she needed it most, it was much too difficult to monitor. There is a strict ruling that only the patient can control it, child or not. The result was a very disturbed night, with an exhausted Ella, Mummy and Nanna at the end of it.

Today has been a much calmer day. Ella began by having a bedbath , given by nurse Kelly….much to Ella’s shock. At the end of it though she was relaxed and lying peacefully, trying to catch up on many lost zzzzzzzzzzzzzz’s.
Sally popped out to eat her breakfast ‘down below’ and phoned me to say that she had seen the cells arriving! We couldn’t believe that this had happened twice on the run. They came by ‘World Courier’ and word quickly spread. Mr Wynn arrived and had a meeting with Sally and Damian, to explain the procedure again and gain their consent, and the next thing was the transplant team were in the room and Ella was receiving her second transplant.
This time Kevin, (remember him from the first time?) held the small bag of cells while they went through Ella’s line and we all looked on in amazement, including Mr Wynn. This is the first transplant of it’s type in this hospital, the only others being at Great Ormond Street.
People had told us that when frozen stem cells are in transplant there is a strange smell. Well, there is. Mr Wynn said that it smells like sweet corn, or if you are posh…….asparagus! Of course ours smelled like asparagus. In fact the whole unit smelled of it, for quite a while afterwards. Apparently, it’s the gas the cells are stored in, and once they were in Ella’s body the gas is released through her breathing. How amazing! I love asparagus soup don’t you?
Ella has had a much more settled day. The morphine pump has gone and she now has background relief as before. There is still a long way to go in her treatment, with two more cell doses to be given in the next few weeks, but throughout all this our little angel shines on, inspiring us all with her braveness.
At the moment Sally and I are in the igloo, and Daddy is spending the night with Ella, so of course we know that she is in very good hands. She was very peaceful when we left and Damian will ring us if he needs extra help.
The blog tonight seems to have been serious news, but there hasn’t been a lot of time for those ‘lighter moments’ we seem to have each day……………except these ones!

Who are these two 70's throw backs?

Night night to everyone. Thank you for all your prayers and good wishes, and lots of love to everyone from us,

Ella,Sally, Damian and Annette.xxxx