This is our reality

You think you have everything under control, you think you have the upper hand, you think you are winning against XP then – bang – it hits you in the face like an unimaginable, unexplainable force.

Just the word is enough to leave me feeling sick and motionless. Time stands still for a few moments whilst the word has time to travel from my ears to the part of my brain that deals with the understanding of words. The word sits there in my head whilst the world carries on for those few seconds. My brain frantically trying to decode the words being said to me to mean something different but no matter how hard it tries the end result is the same – melanoma.

We have the results back from Livvy’s last surgery, I knew from the three suspected lesions that at least two would be more BCCs (basal cell carcinomas), this is something we have come to terms with, it’s expected and we can deal with it as they arrive. We know what we are dealing with we know how they work, we are always one step ahead of them waiting for them to appear and treating them as quickly as they come. Melanoma was not on the horizon, it was a far distant thought, not now, not aged six.

BCCs are somewhat predictable and easy to manage, they are far from ideal but since diagnosis two years ago we have come to live with them and they no longer leave me speechless every time a new one appears, I’m not sure how many BCCs Livvy has had removed, I lost count many months ago, but it’s more than a few.

It was the same consultant dermatologist that rang me to tell me of Livvy’s latest results that rang me on Friday 13th June 2014. It’s almost two years to the day and I find myself sat listening to words that don’t seem real once again. Her calm reassuring voice is a welcomed relief to help shelter me from the blast that was coming. Phil and I had discussed the possibilities of Livvy having a melanoma in the future but it was so far off in the future that it wasn’t worth discussing, what can you say about something that we both prayed wouldn’t become a reality.

Although we found this one early and it is in situ and totally, fully, completely removed it has still left us with a heavy weight in our hearts. It feels like after two years of living with xeroderma pigmentosum, coming to terms with our new world, learning our own strategies to keep Livvy safe, just as we get comfortable in our new world, it’s thrown us an unimaginable blow. We knew it was coming, we just thought we had some time to prepare ourselves, but once again what the world has in store for us is not the same as what we had planned. Although this time the melanoma was found early and has been contained before any lasting damage could be done the feelings surrounding it has taken us emotionally back two years. It’s taken us out of our comfortable safe space and reminded us what we are living with daily.

At times it’s hard to stay positive, it’s hard to stay focused, it’s hard to pick out the best bits of our world. It’s too easy to see the negatives, we will, as we always do, come out of the other side of this, fighting and ready for the next stage in our XP journey but right now all my energy is going on keeping Eddie and Livvy smiling, protecting them from the news we’ve received and allowing them to enjoy being carefree children. It sounds so simple but believe me right now that feels like the hardest thing in the world, when everything else is pulling us down. I’m hoping that with the cooler wet weather that’s been forecast for next week it also brings back the hope and determination to beat XP we had before. Right now there feels like there is little relief in all directions.

It’s so easy to forget the reality that we live with, protection has become a way of life for us. We protect Livvy from every inch of possible UV exposure, it’s become second nature for us to protect her. It’s easy to forget the reasons why we are protecting her until we get the results from an innocent biopsy, our world comes crashing down and we are faced with reality. This is our reality.


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