Hope

It comes round so fast, it’s only another 2 sleeps until my little girl has to undergo surgery again. The last time was less than 10 weeks ago, how can that be right or even fair?

The melanoma in situ that was totally and fully removed needs to be re-excised to meet guideline margins, it’s a procedure that needs doing but is not an emergency as all cells were successfully removed, it’s more of a precaution and to meet national guidelines on such things. We as parents and the medical team all agreed that it could wait until she next has a GA, all knowing that at some point in the future she would more than likely need more BCCs removing.

Whilst waiting for the results from her last surgery and all the relevant doctors discussed the results, planning what would be our next move in this game of XP chess. More BCCs have appeared growing at a rapid rate, so fast that it has meant that less than 70 days have passed and we are 2 sleeps away from yet another surgery.

I’m glad that the melanoma is going to be re-excised with the larger margins as it takes away any worry I had about waiting for it to be done over the next few months, I just thought it wouldn’t be so soon, perhaps even in the new year, ending this year with no more surgeries.

Nothing is ever simple, nothing ever goes to plan, nothing is predicable when living with XP. We live a constant merry go round of tissue sparing, only taking away the most urgent lesions and suspect moles whilst leaving behind normal looking ones, what is normal on a child with XP? she has so much damage on her face from the exposure she experienced before diagnosis but at the same time she is still growing and developing her own natural moles and freckles, picking out the damage and potential cancerous lesions is a minefield, all whilst keeping scaring as little as possible as all this is happening on her tiny face.

She turns seven next month and this surgery in two days time is her seventh, you may think that’s not too bad ‘one a year’ but remember she was only diagnosed two years ago so those 7 surgeries have been compressed into the past two years. All removing cancerous cells from her perfect face. The scars tell a story of bravery, courage and a determination to fight. They also portray a tale of sadness, a stolen childhood, a need for protection.

Each time Livvy has surgery it reaffirms the need for protection, protection from the one thing that is everywhere everyday – UV light. Since diagnosis two years ago we are fairly confident that very little if any UV hits Livvys skin, her home is protected, her school is protected and she happily wears her protective clothing if we are outdoors or in an unsafe environment. Therefore all these cancers that are appearing are as a direct result of the damage done before protection, we are hopeful that we are coming to an end of new lesions and cancers appearing, at some point in the near future we should start to see the results of living in an UV free bubble. I thought we’d hit that barrier a few months ago, it seems every time I think it is her last surgery more candidates start to appear on her already tired, damaged yet perfectly beautiful skin.

Let’s hope and pray that this is the last lot coming through and by Christmas we are free from surgery and can concentrate on moving on without the worry of old damage appearing as cancer cells. At times it feels like that’s all we have, hope. We will hang onto that hope with both hands for as long as it’s there as that’s the only way we will get through each new surgery, with the hope that it’s the last one. We can’t change the damage that was done before, we don’t really know for sure when the damage will level out, we just hope it’s soon.

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