It has been quite an anxious week. Whilst we were eager for Charlotte’s scan to be carried out, there has been a considerable amount of trepidation and concern with the potential results. In the last 2 months Charlotte has been suffering, all be it inconsistently, with headaches and discomfort which we believe is as a result of a malfunctioning shunt. At a specific point when it occurred, it happened to be hours before Beck was to speak about “Charlotte’s story” at an undisclosed venue in front of Sydney’s “A List” community in order to raise funds for Sydney Children’s. Fortunately the shunt cleared itself and Beck was able to deliver one of her exceptional speeches at an event that raised over 1 million dollars. On top of the rigors of being a mother, a Sydney Children’s Hospital “Champion” Master Speaker, Rebecca is also completing her Master’s in education. Throughout Charlotte’s journey Rebecca has maintained her master’s degree and sustained HD average (simply remarkable). This is the final year, her most recent assignment was also due in the weeks before Charlotte’s scan and amongst the numerous fundraising obligations, Beck still managed to maintain her HD average with a view to pursuing a doctorate.   

Given the abnormal events happening with the shunt, coupled with the possibility of relapse, it is very difficult not to think and prepare yourself for the dreaded result of the next scan, I constantly find myself preparing for the worst mentally, rationalising one thousand and one possible scenario’s that will present given a bad outcome, yet obviously, always hoping for the best.

Fortunately after the scan that was carried out on Tuesday we received the great news on Thursday that the cancer had not returned. Further discussions with the medical team revealed they would not replace the shunt until its absolute failure, so Charlotte may endure further periods of discomfort before it is replaced. It is with good reason they do not replace the shunt on a whim, as this operation is a high risk procedure, although not in the realm of Charlotte’s medical history!

Charlotte is quite well, if you were to see her she is remarkable, you would not know anything has ever happened.  However in reality she is gruelling and unrelenting to deal with on a daily basis, it is extremely tiresome for Beck to deal with. She does not rationalise well, her concentration is very poor, her moods are viciously extreme, much of this is what one would expect from a frontal lobe disturbance such that Charlotte has endured. In saying that she is an amazingly charming and beautiful girl. It is also very difficult to rationalise discipline between Madeleine and Charlotte and withhold a balance of equity given Charlie’s different requirements.

It is with trepidation that I look to our/Charlotte’s future. Fortunately she has a mother who is well versed through her studies to understand the complex nature of the brain and I trust will achieve the best possible outcome for Charlotte. The other big advantage is Charlotte’s overwhelming tenacity and determination.

As always, I thank you all for your continued support. I am not very good at replies but I want you to know it is sooooo appreciated,

Kind regards,

Rod and Beck