By Martin Shave, Tom’s Trust Trustee and father to Camille, Tom’s Trust Young Ambassador
As we are in the midst of Tumour Awareness Month, I am reminded of how a single moment, a single event can change your life forever. Our journey started almost fourteen years ago, in 2009, when my wife and I were taken into a small room at Ipswich Hospital and told that our two-year-old little girl had a very large tumour growing around her brain stem.
The moment that the words left the lips of the consultant will always haunt me; I still to this day have the close-up image of his lips saying those words. I can no longer hear the words, just the movement of the lips in slow motion. I am still haunted from waking up the following morning in a sun-drenched room, crying uncontrollably for what seemed like hours before reaching the realisation that I needed to be the strong one. I am still haunted by all of the things I heard, saw and read over the coming months and all of the lies I told my wife to protect her and to keep the positivity up for both her and our daughter, Camille.
My memories and mental scars are insignificant; they are insignificant because we still have her, she is here, and we are in an incredibly fortunate category. To put this into context, when Camille underwent proton therapy treatment in the US, we were surrounded by a group of families in a similar situation every day for nearly four months. Of all the children who became part of our lives in the US, Camille is the only one who is left. I don’t know if I have ever felt survivor’s guilt, perhaps it should be a more obvious and stronger feeling, but when you are living with a broken child, your focus and emotion is invested in “what next?”.
Camille is a wonderful young lady who will turn sixteen in a few weeks. If you had told me back in June of 2009 that she would celebrate her sixteenth birthday, I’m not sure I would have believed you. However, Camille’s life is hard and when her peers at school will be doing wild and wonderful things for their sixteenth birthday parties, possibly getting drunk with friends, we will be organising a party at our home and inviting our friends and family, because Camille only has one friend.
This is the hidden consequence of Brain Tumours and the harsh treatments that saved her life. A study once showed that of all survivors from paediatric brain tumours who reached nineteen, not one of them had a boyfriend or girlfriend.
When I think back to Camille’s journey, the catalysts that have led us to this point have been obvious, whether that is the months of being isolated from other children, attached to a hospital bed by a plethora of wires, drip stands and the regression of losing the ability to walk. Throughout that period, Camille looked different to the other children she did meet, with a bald head covered in a patchwork of aggressive and angry looking scars caused by countless surgical operations on her head.
Even following treatment, when we entered “normality”, it didn’t matter how much you try to insert Camille into the world that we all take for granted, her differences were obvious: she was less physically able than her peers, meaning she was rarely included at playtime. Camille found concentrating and speed of thought more difficult than most other children, meaning that as her peers accelerated through primary school, Camille was left looking at them disappearing over the academic horizon. We were perhaps too protective as well; every step, movement, event was closely guarded and maybe she wasn’t able to go through the life lessons and experiences that shape our children into the adults they become.
Camille is aware of her circumstance and knows she is different. This is where the support that Tom’s Trust has provided us has been invaluable. Camille has been supported in understanding who she is, why she is different and ways to deal with these challenges that she faces every day. She is actually a strong minded and hilariously funny young lady; the support she has had from Tom’s Trust has helped shape her and given her a chance of getting GCSEs this summer as she finishes high school.
However, the next chapter is another step in a long and difficult journey. She now has to face transition into adult services, both within the education system and within the health system. We are working through conversations with her future college setting and through Ipswich Hospital and have been introduced to some very useful people; but Brain Tumour survivors are different and complex. The thought of Camille landing in an adult hospital ward or travelling miles every day by herself to college are terrifying for Camille and us as her parents.
We would have given anything back in 2009 for Camille to be moving into a college education and reaching adult services, but the reality is difficult and specialist services and support are still required, even when the trauma of a Brain Tumour diagnosis is a distant memory.