Our beautiful girl should be at the park today. She should be squealing as she goes down the slide or yelling for me to push her higher on the swing. She should be going to kindy. She should be making friends. She should be healthy. She shouldn’t ask me every day if she has to have ‘Captain Chemo’ today, or whether she’ll be getting the little feeding tube in her nose again. She shouldn’t know that she has a lump in her head that’s making her sick, and that making her more sick is the only chance we have at winning. She shouldn’t have a scar on her chest where her port, ‘Mr Bump’, sits, with its little tube delivering poison straight into the vein near her heart. She shouldn’t have NF1, and she shouldn’t have a brain tumour. But this is her reality, and it’s a tough one right now.
Emme has an extensive diffuse low grade brain stem glioma, reaching from C5 in her spinal cord right up through the middle of the brain. It’s inoperable because of its location – the brainstem being the center for all our subconscious bodily functions – heart beat, breathing, swallowing, blood pressure, and sleep, and our only chance of controlling its growth is through chemotherapy. And to be honest it’s not a very successful treatment option.
In March this year, we watched Emme go into surgery to have the port placed into her beautiful little chest, and the following day the first horrific round of chemo began. The effects were instantaneous and so very cruel. The weight fell off her tiny frame, food became intolerable, and sickness and pain hit her hard every day. I have never cried as many tears as I did in those early weeks. The day her hair started to fall out in chunks was devastating, and watching it dangling from her little hands was shocking. It was a relief to get rid of it completely and move forward with a brave face. She’s so beautiful exactly as she is. She’s brave and fierce and happy, and she teaches us to be all of those things in the face of adversity every single day.
Emme’s had chemo 10 times in the past 4 months, and she has another 8 months to go. Our hope is that the treatment stabilizes her tumour and that we’ll get a bit more time to find another, better, option for her. There are days when I’m furious and filled with grief that this is happening. Watching her terrified and in pain nearly breaks me. But most days I think ‘we’ve got this’. Because, in spite of everything, our brave girl laughs often and hard, is clever, and curious, and strong, and she lives life large. She IS the silver lining in this journey, and I know with all my heart that we’ll never give up trying to find a better treatment option for her, and for all children fighting their own NF battle.