When I set out to write this blog and start my journey of sharing our life with all that wish to read, it was meant to be a happy place and that is what it will remain. However, every now and again I revisit a place that’s not so happy, I guess with another surgery fast approaching I’ve been thinking about how we got here and revisiting the day we found out. I don’t want to put a downer on things by sharing my memories with you, the reader, but to celebrate with you how far we’ve come, my world fell apart around me on that Friday morning. With the help of many friends, our family and a fantastic medical team we have rebuilt our world and I believe we are stronger for it.
The days and weeks that followed diagnosis were hard, harder than anything imaginable but without them we wouldn’t be where we are today. It’s hard to revisit those days but I feel it’s important for me to identify how well we are doing, life as I knew it ended that day, but almost two years later we are still here smiling. I also feel it’s important for you as the reader to understand how we got to where we are today, as our past shapes our future. So make your self a cuppa sit back as I take you back to Friday 13th June 2014.
I’ve never really been superstitious and I don’t think I am now. Although I do believe someone is looking out for us and as Phil always says, ‘we have lucky bones’, we have always lived by that saying, if things are going bad we look at each other and say everything will be ok we have lucky bones.
But, what a day to get a phone call that shocked us all to the core, it knocked our world off its axis and changed our lives forever. As they say, ‘you couldn’t write it’, if it had been in a movie you would turn to each other and say ‘it was believable until you see the date!’
I remember all of that day in the finest details (up to the point where I drunk myself silly and fell asleep crying into my pillow). It was around 8.30 in the morning when my phone rang. I remember opening the front door as it rang, I left the children playing just outside the front door with the morning sun shining down on them. It was the dermatologist consultant that we had met a few weeks earlier. We got referred to her as Livvy had a spot on the side of her nose, she’d had it a while and it would start to go but then would come back again, it never totally went, then she started picking at it! The GP was unsure what we were dealing with but felt uneasy about the amount of freckles on her face, the pattern and spread of them wasn’t ‘normal’. I couldn’t really see the freckles I just saw my beautiful daughter, however when I look back at photos now, she had so many and they were so dark.
So, the dermatologist took a biopsy and she rang me on that Friday morning with the results. She wanted to see me as soon as she could without Livvy. She never mentioned Cancer, but I knew, I think I asked her if it was but never said what the ‘what’ was, I couldn’t say the word, she said it was. We were talking in code but we knew exactly what we were talking about. I asked if I should take someone with me as Phil was in Qatar, she said yes you need someone with you.
And that was it, my baby girl had cancer, I rung Phil and told him. He rung the dermatologist and demanded to know the results over the phone, he needed to know if it was cancer. He wanted to know if he needed to come home. He got the answer yes to both questions. He dropped everything and rang me back, ‘I’m in a taxi I’m heading to the airport, I’ll call you back when I have a flight’.
I had to get the kids to school, I held the tears back as I drove the short drive to school, I was doing well until I walked into Livvy’s classroom, I looked around for her teacher but she wasn’t there, it was another teacher from a different year. Our eyes met and my tears started flowing. She got me into a different room away from the children. I told her about my phone call. ‘No, it’s not right, you can’t be sure’ she said in response. Her face went pale. My legs started to give way. I held onto the wall. I wanted to be sick.
I left Livvy and Eddie at school, it was the hardest thing to do, I wanted them both with me where I could keep them safe but I had to find out more, I needed to see the dermatologist and get more answers.
My Dad rung me when I was on my way back home, ‘I’m on my way, Phil’s phoned me’ he said down the phone, all I could scream was ‘she’s only 4, how can she have cancer, she’s only 4’.
I tried to ring my friend, her phone rang out, where was she? She always has her phone with her! I drove past her house as I arrived home, she was just getting out of her car from the school run, ‘where’s your phone?’ I asked her, ‘I forgot it this morning, what am I like’, she started going on, I cut in and said Livvy’s got cancer.
Her happy carefree smile washed away as my words hit her.
‘Livvy has skin cancer, Phil’s at the airport and Dad is coming over, I need to go to the hospital’
I was still sat in my car, she told me to go home and she would come straight round after telling her husband where she was going.
We sat in my kitchen in shock. I made us a drink and we sat there going over what had been said on the phone. Picking at every detail trying to make sense of it all. I had to be at the hospital at 12. Dad arrived and joined us in the stunned confused world we had entered. My friend’s husband came over.
‘Jeddars’ he said as he hugged me, I didn’t want comfort I didn’t want anything I wanted to go to the hospital and be told they got it wrong. He asked if there was anything he could do to help, there wasn’t. So he cut the grass! He said Phil doesn’t want to be coming home to a lawn that needs cutting and he kept himself busy cutting the grass. It made us laugh as we watched him walk back and forth in the June heat cutting the grass. We had a crisis on our hands and he cut the lawn, it still makes me smile now.
12 o’clock arrived and I found myself sat in the consultation room with my mum and dad. I got all the answers I needed and more, I cried, as did the Dermatologist.
I asked if Livvy was going to die, ‘No, it’s going to take a lot of people a lot of time, but she’s not going to die’ I took strength from that line, and it stays with me today, we have met some amazing doctors, nurses, surgeons and many other health care professionals, the list goes on and on. They have all played their part in keeping Livvy safe and well. We owe them all so much and are so grateful.
I returned to school, Mum and Dad took the children home whilst I stayed to brief the teacher that I had met that morning. I told her how they suspected that Livvy had Xeroderma Pigmentosum and told her as much as I knew.
I was glad it was the weekend and that Phil had secured a seat on the very next plane that was heading for the UK. He was due to land in Manchester the following morning. Mum and Dad left me and returned home, I was ok until I was left in the house all alone with the children and so many thoughts rushing round my head. I went and knocked on my neighbours door, I cried, I told her, she came and sat with me in total disbelief. I couldn’t tell the children, what could I say?
After some time I braved it and told the children that the doctors think that the sun is making Livvy get spots and that they could make her very poorly so we need to keep the blinds closed. They took what I said and went off to play, they could see I was upset and I guess didn’t want to make me more upset by asking questions. They both looked a bit confused and scared.
The kids went to bed and the day was drawing to an end, my neighbour stayed with me. I remember her making me a cheese sandwich and making me eat it! Two other friends came over and we drank wine in the garden with the last of the summer sun shining down on us. We talked about everything and nothing, I cried, I laughed, I had so many thoughts in my head that I couldn’t think anymore.
One by one the girls went home as the early hours of the morning crept up on me, I didn’t want to go to bed. What if they did get it wrong! I didn’t want to go to sleep until someone had rung me to say they got it wrong. If I went to sleep then forever Livvy would have had cancer on that day, I waited and waited for the phone to ring. For someone to say it’s all over we got it wrong, go to sleep and in the morning life will be normal. We had lucky bones this couldn’t be happening to us we have lucky bones. Of course no one was going to ring me, and I started to doubt our lucky bones. I must have fallen to sleep and in the morning Livvy still had cancer.