Charlotte had chemo and a photo shoot for the Daily Telegraph last Thursday and was home just after dinner. She is a busy girl but life out of hospital is far more pleasant for Rod, myself and Madeleine too.

She has been well and has enjoyed being at home with Madeleine and going out when the weather permits!  Today she had an MRI under general anaesthetic to check for tumour growth and the build-up of fluid on her brain. Well, there is no tumour re-growth (YEAH>>>>!!!@##$$$$) but more fluid is building which will need to be dealt with. Her team is in discussion about what to do and when to do it. So we are eagerly awaiting a decision and discussion about the shunt, chemo and how soon etc..

 

Charlotte is doing well. Many people have been asking how she is feeling, what she is doing and saying, etc. Well, she is sensational! Energetic (mostly) cheeky, tiring, she speaks really well and with general confidence, she is embracing the 2s and loves her food when she is not nauseated. In fact the first words she spoke, as she was being wheeled back on the bed to the ward were; breakfast Mummy?! We left the house at 6am this morning and she was first on the list; so she hadnt eaten since 7.30 the night before. The porter and nurse laughed!

 

Thanks for all the messages and phone calls about the article, Hope for Charlotte on page 11 of the Daily Telegraph  Friday last. The discovery of the gene NOL-3 and the need to switch it off in order to have treatments work in malignant gliomas and medulloblastomas is crucial in developing targeted therapies for sufferers and the potential to lead to other advances in tumours like Charlottes (anaplastic ependymoma). Similarly, thanks for the messages, texts and calls yesterday and today. We were thrilled with Charlottes MRI results. There is a sense of absolute relief when they tell you that there is NO tumour. Charlotte is fighting a difficult battle; we just want her battle to be worth it. I long for her to be free of chemo, the tumour and the confines of medical intervention. She is such a joy to look upon, share and exist with, but she still has a long way to go.

 

If you have the chance at parenthood, look upon it with a sense of mystery and awe. You are given the joy of watching life afresh, and the chance to help another being take flight into the riches and mystery of life. The very clay of which our world is made is for a brief moment placed in your hands.  - Kent Nerburn, Simple Truths

 

Much love,

 

Beck and Rod xo