Another hour passed us by as we sat on the hospital ward, I looked out of the window as dusk fell and the lights of the Shard lit up the night sky. We had held Livvy’s hand as the general anaesthetic had slowly worked sending her off into her own peaceful world where she was blissfully unaware of the magnitude that was about to take place on her own perfect face.
We didn’t want to leave the hospital whilst Livvy was in theatre, we needed to be close by, as a parent you feel weak and helpless. Staying close by was the only thing we could do, to be there as soon as Livvy needed us. To hold her hand, stroke her hair to comfort her, and to tell her all will be ok.
We sat on the ward in a side room away from the hustle and fast paced world of a children’s hospital. We counted every hour, not knowing how long it would be until we would see our daughter again, or what she would look like.
Before Livvy was taken down for her surgery we met with both surgeons to go over what we had previously discussed with regards to which lesions were to be removed and by what means. A few more lesions got added to the list bringing the total number of skin cancers to be removed to 12. Mohs surgery is the most effective way to remove such skin cancers although to remove all 12 in this way would be a lengthy procedure, it was decided that the skin cancers not directly on her face such as on her ear and in her hair line would be removed with a margin using the conventional surgery technique that Livvy has become so used to. These could be removed whilst waiting for the mohs results, therefore no time would be wasted during Livvy’s GA.
As each hour passed us by we had to remind ourselves how many skin cancers were being removed this time which would inevitably prolong the surgery time. I think the most that Livvy has had removed at any one time previously was 4, taking around two hours from leaving her in the anaesthetic room to being reunited once again in recovery. It was only this logical part of our conscious that stopped the worry and panic setting in as we reached six hours surgery time. It was when we rang Eddie who was at home with his grandad that the reality of how long the surgery was taking set in as we watched Eddie’s face turn to worry as we said goodnight to him without Livvy by our side, we reassured him that she was in good hands, we know Livvy’s surgeon very well, as does Eddie from his many visits to the XP clinic with Livvy. I think by having someone in there with Livvy who Eddie could call by their first name was like having a friend watching over her, Eddie took some comfort from this as he laid his head down to sleep. We promised him no matter how late it was we would send him a message letting him know that Livvy was ok and awake.
As the clock started to head to six and a half hours the doors of the small room which we were sat in swung open as one of Livvy’s surgeons came in. Relief like no other filled the room as she told us Livvy was in recovery and someone would come to get us as soon as Livvy was awake. She told us that all 12 skin cancers had been removed successfully, 8 using mohs technique and 4 using conventional surgery. She showed us photos of Livvy from every stage of surgery, I’m glad she did as I think it helped for when we saw her lying in recovery, her nose completely covered in dressings. Three skin grafts were needed on her nose, her perfect tiny nose. Afterwards Phil told me he hadn’t liked seeing the photos of Livvy, they made him feel a sickness deep in his stomach, looking at his daughters face which resembled something you would expect to accompany a news article about someone being glassed in the face on a drunken night out.
It feels like a life time ago that we had sat watching the clock for almost 7 hours yet it was only three weeks ago. Before Christmas we visited our local hospital in Nottingham to have the dressings removed, the skin grafts are healing well, all other wounds look sore but neat and tidy. As always Livvy astonishes us with her courage as she peeled all the dressings off immediately wanting to look at herself. I took a photo of her on my phone to show her although I’m not sure that the nurse in the dressings clinic thought it was a good idea as she frantically tried to clean it up as much as possible whilst I wrestled with my over flowing bag looking for my phone.
I held the phone up to Livvy’s face as the biggest smile beamed from ear to ear, you would think she was posing for a holiday snap and not to examine her face after a pretty big and complicated surgery. I turned the phone round to show her and her smile stayed in place as she started flicking though our family photos showing the nurse photos of her beloved guinea pigs, she had seen how she looked and that was all she needed.
Don’t get me wrong the days that followed surgery were tough, it took Livvy a good four days to get back to being ‘Livvy’ as she sat in a daze with a sadness about her. I’d watch her looking at her dressings in the mirror and tell her that everything will be ok, the pain would fade and her wounds would heal. She would hold her tears back as I tried to wash the dried blood from her hair, the sadness in her eyes was evident as the swelling and bruising took over her right eye. I’d sit watching Christmas movies with her in silence not knowing what to do for the best other than being there when she needed to be held. As the days passed us by slowly the happy, smiling, crazy Livvy that we all knew re-emerged, the length of the surgery clearly had its effect on Livvy, normally she would bounce back after a day but this one took a little longer, six hours of anaesthetic is a long time for anyone let alone an 8 year old child.
I hope that 2018 is to be Livvy’s year, a year with no surgery, a year full of fun and adventures without skin cancer or surgery hanging over her. We are having a New Year’s Eve party at home tomorrow and I can honestly say I’m looking forward to saying goodbye to 2017 and welcoming in a brand new fresh year, starting the year as we hope to carry on – skin cancer free.