One step at a time

Today sees 3 years since Livvy’s diagnosis of Xeroderma Pigmentosum.

And so, to mark this milestone Jodie has kindly invited me, her husband and Livvy’s father, to write a guest post on her blog, for which I am honoured. Jodie manages to always get her point across so eloquently and beautifully in her posts so I have some big shoes to fill and I’m not sure I’m up to the task to be honest, but anyway here goes.

So, if you are a regular follower of Jodie’s blog you will remember her post titled Friday 13th June 2014 where she so eloquently told of the nightmarish news we received about our daughter Livvy’s diagnosis, from Jodie’s perspective, the thoughts and emotions running through her head. Well with today being the 13th of June once again, I have chosen to attempt to tell the same story of what it was like from my perspective when we were told on that fateful day of the news that would change our lives forever.

Firstly, I would like to rewind to 10th May 2014, just 34 days before Livvy was diagnosed. This was the day that I left my family behind, albeit only temporarily and boarded Qatar Airways flight QR 022 from Manchester Airport bound for Doha in the State of Qatar, after having quit my job of 20 years and making a leap of faith and taking a new position in Qatar.

Jodie, Eddie and Livvy were very excited about this new adventure and the prospect of starting a new school, and life in an exciting new country all whilst making new friends. The schools in Qatar are very busy and are often full and so its usual to place your children on a waiting list and then bring the family over when school enrolments are confirmed. So, Eddie and Livvy where enrolled to join Doha English Speaking School and it was just a matter of time I thought, before they would be allocated a school place and the family would join me for our new adventure to begin together. At that point everything was ‘normal’, well as normal as could be for a family that were separated by 3,500 miles of land and sea, however this was a known and accepted sacrifice and one that would soon be over when school places were confirmed.

In the meantime, I started my new job and stayed within walking distance of my office in a local hotel called the ‘Amari’ which was comfortable and convenient.

In the middle east, the working week starts on Sunday and finishes on Thursday with Friday being the holy day of rest and prayer, therefore a day off from work. So, on Friday 13th June 2014 I was in my hotel room, doing some ironing in preparation for the week ahead. I had arranged to view some properties in the afternoon so that we could start to get a feel for the type of properties available which we would eventually live in, and how suitable each one was for our pets (Jack our dog and our two cats were due to make the move across the world with us too).

It was normal to FaceTime Jodie and the Children, in fact we would spend hours with FaceTime just left on as if I was in the room with them which was nice. On this Friday morning, my iPad buzzed into life at approx. 11am, which was 9am in the UK, which I immediately thought was strange because the kids had to be at school at 9:00am, so knowing that Jodie doesn’t usually call at this critical time of the school departure I sensed something was wrong.

What I was about to be told by Jodie changed my life forever.

I was numb, my brain was struggling to comprehend what I had just been told, as you would expect Jodie was in pieces and this made the news even more shocking to receive. My baby girl had skin cancer! It was incomprehensible, surely something was wrong? The words were just not sinking in, the world was passing by in slow motion as I grappled to process what I had just been told.

I remember Jodie and I taking Eddie and Livvy to the local hospital only a few weeks before which resulted in a biopsy being taken from a sore on Livvy’s nose that just wouldn’t heal, I remember it was around easter time because the nurses at the hospital gave Eddie and Livvy Easter Eggs and Livvy also ended up with some Disney Princesses perfume for being extra brave (no wonder the NHS is in debt).

I needed to hear it for myself, the consultant that had just called Jodie was the one we had met a few weeks earlier. I rang the hospital and got through to the correct department. I found myself talking to a junior doctor who was sticking to hospital protocol and not discussing any results with me over the phone. I think perhaps the junior was in a little too deep and informed me that she would get the consultant to call me back. I hung up and paced the floor of the hotel room. A few minutes later my phone rang, the consultant confirmed all that I had already been told by Jodie. She knew I was in Qatar and told me I needed to come home. Then it hit me and I broke down in uncontrollable floods of tears, tears for my little girl and all the lost opportunities this would mean for her, tears for the uncertainty surrounding her future.

I remember calling Jodie’s father and telling him what had happened and asking him to get round to Jodie as soon as possible, his reaction mirrored mine and we shared a moment of total emotional outpouring together, under normal circumstances this would have seemed strange, but for some reason did not due to the seriousness of the matter.

Panic set in, I just wanted to be there with Jodie and the children to protect them and to make everything better, I called my boss and told him the devastating news and that I would be returning to the UK immediately, he was just brilliant about it all and was fully supportive throughout my whole time over there. In Qatar nobody can enter or leave the country without an exit visa, and these were only issued by the Ministry of Interior and were strictly controlled, the Ministry was closed for the weekend and wouldn’t reopen until Sunday morning. I’m not sure how he managed it but within the hour he called me, and then emailed to me a signed and approved exit visa so that I could leave the country that very same evening on the first flight back to the UK.

I booked the first flight leaving Qatar to the UK which left the same evening and arrived in Manchester the following morning. I thought about what I would do with all my clothes and possessions that I wouldn’t be able to fit in my suit case, I had too much to take back on one flight and I wasn’t sure if I would ever return to Qatar, as crazy as it sounds I took all my clothes and other things onto the streets and gave them away to less fortunate immigrant workers passing in the street, in the faint hope that if I did a good deed then the almighty would look down on me and lessen the extent of our suffering, crazy I know, but the truth.

I wanted to know more about this Xeroderma Pigmentosum, and so I googled it, the images that stared back at me on the computer screen will remain with me for the rest of my life. If you want to understand what I mean, try it, type in Xeroderma Pigmentosum and click on images and you will see what I thought the future had in store for my daughter. It’s simply horrific! Although three years on this is not the image of Livvy and will never be thanks to her medical team, but three years ago all I knew was my little girl had a confirmed diagnoses of skin cancer and a clinical diagnosis of XP – the future felt uncertain and bleak.

The first few days back home were very very dark, both emotionally and literally, it was as if a death sentence had fallen on the family, the house was dark because the blinds were all closed. The world outside our house seemed so frightening and deadly, I felt numb, it’s my role as husband and father to protect my family but I felt helpless and just numb, for the first time I couldn’t make it better I didn’t know how to it was so far out of my control and that scared me.

Slowly we started to come to terms with what we were faced, we learnt more about XP (and it wasn’t as bleak as that first google search). We are now three years into our journey, we’ve had so many battles, heartache and tears along the way. I feel we are doing the very best we can to protect Livvy, to make the environments she is exposed to at home and school safe and to make her life seem as normal as it possibly can under the circumstances. We have a long way to go but I know that as a family unit we are an invincible force to be reckoned with, we will overcome the challenges we are presented with, we have no choice but to do our utmost for Livvy and Eddie and to keep looking forward to the future, one step at a time.