Charlotte and I arrived home on Sunday afternoon. I was thrilled and Charlotte seemed somewhat displaced. Rod was at work and Madeleine was still with my parents. Charlie was tired, sullen, unsure about the intense heat; after a week in a very cold isolation room and extraordinarily clingy. She was so traumatised by the week gastro, a leaking port, two operations, a haemoglobin transfusion, chemotherapy and more than eight attempts to access and reaccess her port without anaesthetic that she screamed when I tried to put her down for an afternoon sleep. She was so distressed about being in the cot and on her own that she climbed over the top and fell to the floor. So, there we were both sobbing on the cold floorboards in Charlotte’s room. She was distressed and I was freaking out about her level of determination and level of trauma. What has always been a favourite and calm place to be was, no longer. She was later greeted by both the grandparents and seemed a little more settled. Her evening sleep went the same way and we were paranoid about leaving her in the cot. She sobbed and screamed for much of the night. Charlotte has been with Rod or I the entire time over the past seven days so being left on her own and in a cot which was where she had been for most of the procedures, was all too much.

Today was mildly better and Madeleine tried very hard to accommodate Charlotte’s fussy nature and need for constant attention. Mum and Dad brought the portable cot over, which is quite deep and has no rails to mount or climb over. Hopefully, we will all sleep better. Our day was also brightened by a visit from Meagan with an amazing and generous gift from the staff at St Pats. Words can not really tell you how truly grateful we are. I guess it is one of the reasons I have always loved the school - I work with extraordinary and selfless people. It is really hard to explain in words how eternally grateful we are for your generosity. Hopefully, one day we will be able to tell you in a better way.

Charlotte is quite a mess at the moment. She has very little hair, has lost a lot of weight, has so many scars and wounds from the operations and has that pale and dark circle, chemo look about her that I try very hard not to well-up each time I look at her. Hopefully, tomorrow will afford more smiles and peace for Charlotte. Go knows she needs it!

Thanks to all those who have visited, messaged and called, Justin, for your personally delivered meals to the hospital, Vanessa you are my angel and to our wonderful parents. We are very lucky. Each day we realise just how much support we really have.

Love,

Beck and Rod xo