**Today has been one of those days when too much information is dangerous, tiring, confronting, devastating, exhausting, upsetting…..a relief!

The morning began with Charlotte’s screams at 4.30am, after she was woken for her 4am obs. She remained awake, despite all efforts by the lovely Sui Wan (Nurse), to get her back to sleep - without having to wake me up. When I woke it was a cacophony of sound in C1 North with the other patients joining Charlotte’s dolcett tones. All jokes aside I was in a lovely sleep whilst I test drove the new armchair that the Children’s Hospital was considering purchasing for the parents. After, my one A4 page /Recliner Chair Review/ I don’t think that purchase will be going ahead good but not good enough! It would need a sound proof chamber to rate in my book. With no intentions of returning to sleep Charlotte accompanied me to the shower (in a pram) and she ate another huge breakfast.

Physio at 8.30am went well. Charlie is keen to walk, bend and sit on her own but we are taking it slowly in order to build her confidence, once more. Following a big morning sleep she awoke in a good mood. The neurologists spoke to us today about her anti-seizure medication and living/caring for her in the event of seizures. A daunting and challenging thought! We also signed a consent form to have Charlotte’s tumour used for research by the Centre for Children’s Cancer and Blood Disorders at SCH and the Children’s Cancer Institute which we hope might be useful in determining the cause and progression of treatment for future patients. It would be wonderful if others did not have to experience this journey, ever.

It has been two weeks since her operation and she is doing fabulously.

However, we have had no word on her pathology. After asking if the Head of Oncology could speak with pathology and at least give us an idea of what has been happening, we finally had a visit from David (Oncology) who gave us the disappointing news. Whilst the pathology has not been completed it is pretty certain that Charlotte’s tumour is malignant. As Erica (Neurosurgeon) has told us, it is BIG and BAD! We were prepared for that news but hearing the word malignant out loud was devastating.

It is unlikely that the full pathology will be available until next week as it has been sent to the US for another Neuro-pathologist to analyse the sample. The doctors need a more definitive idea of the type and nature of the tumour to develop the best plan of attack for Charlotte.

It is looking like Erica may go in again to get as much of the tumour as possible, (and that may not be all of it) followed by a course or more of chemotherapy. The nature and type of the tumour will determine the type of chemo. Some chemotherapy does not work on certain tumours, etc….

This next operation will be more intrusive, complicated and dangerous for Charlotte. We have a happy and fully-functioning 16 month-old and we are frightened for her future recovery. How much can one little girl cope with? Then, there is chemo too!

When we took her outside yesterday, for the first time in weeks, the wind blew and she clench her teeth, squished her nose up, smiled, and shivered as the wind whirled through her hair. I am enjoying those moments with her every minute. Her smell, her smile, her cuddles without medical tubes, her love of food (any), even her waking screams. Pray for our little girl because she deserves to feel the wind through her hair and those simple pleasures for the rest of her life.

Love and thanks,

Beck and Rod xxoo

/"Learn from yesterday, live for today, hope for tomorrow." /Albert

Einstein