Jess's mother Shirley shares her story
If courage, strength and optimism could have saved Jess then she would still be here with us today. Part of me wishes she had completed her diary. It brings back her voice and gives us strength to know what she was thinking. However, the gruelling treatment schedule which started soon after put a stop to that. Teenagers facing the severe chemotherapy necessary for primary bone cancer are given a drug called Nabilone to knock them out, to avoid experiencing some of the more severe symptoms. Jess was just 13 years old when she wrote this. Imagine what she would have achieved given the chance to grow up, do her GCSEs, A-Levels and go to University. The other part of me will always be forever grateful that Jess didn't have to find the words to describe what she went through. I hope that, one day, the trust that she had that someone could save her will be a reality for all other children fighting cancer.
This one-off diary entry was written by our daughter Jess after she had been diagnosed with osteosarcoma in August 2009.
Five days ago I was told I had an osteosarcoma, which is bone cancer, in my hip. I have to have 10 weeks of chemotherapy; then an operation to have the tumour removed, and also a hip replacement, because there isn't going to be much left of my bone once they've scraped off the cancerous bit. Then after I've managed to walk about, I go back to Addenbrookes (from the Stanmore Royal National Orthopaedic Hospital in London) for 20 more weeks of chemotherapy, and then I should be all clear."
It's going to be a long haul, tough in most places, but I'm willing to do anything to get better, even if it means I will have to feel worse before that happens, or I won't be able to do the sports I loved doing anymore, like running and playing football. I can still swim and hopefully cycle after my op though, so it's not like I'm going to be completely out of action for the rest of my life. And also because I'm young, they have high hopes in how everything's going to pan out for me.
For some reason none of this has upset me much. I'm not sure why, maybe because I know that the hands I'm in are the best in the UK, maybe even the world, and that they say I'm going to get better in a year, and I trust them. Although a year might seem like forever to someone my age, in the great scheme of things it's nothing. I can give up a year of my life to get rid of my cancer and live a long and happy life, right?
That's the other thing that's keeping me going I think. The fact that some people live with cancer their whole lives, and the chemo drugs are so strong that they get so miserable that they don't even realise that the pain from their cancer is gone, because it's replaced with the sickness. Even though I'm unlucky right now, I'm not gonna be unlucky for the rest of my life. And another thing that's motivating me is my family and friends. The thing about this illness is that it's not just you that's affected by it, it's everyone around you. Everyone is really shocked and they don't know how to react or treat you.
My family were all brilliant. They didn't try to be all smiles and too happy for me, which would have made me feel a bit cut off, but they didn't cry too much either. They were just the right balance, being worried but optimistic. Our close family friends took everything well - some of the kids got upset and some of the adults too, but that just showed me how much everyone cares about me, and wants me to be okay. That's motivating in itself, because you want to get better not just for your own sake, but for everyone else's too.
My close friends at school were also amazing. I only told 3 people before school started again in September, and they were all so supportive of me. We laughed about it and were shocked about it, they never were afraid to ask questions to my face, which made me more comfortable talking about it and also it helped when I was explaining things to doctors, because I could get my head around it and understand the condition. Then I went into school on the first Monday back in September, starting year 9, and my teacher told everyone in my class about the cancer. I think some cried, but most of them were just shocked. No-one really looked at me when I came back into the classroom, maybe out of embarrassment, maybe because they simply didn't think it was a big deal, since I'd looked fine.
That was one thing that really got to me; why did people think I was joking when I told them with a smile on my face? Just because I was optimistic didn't mean I was joking - I was just ok with it. Mostly everyone took it well, with a smile on their faces and a hug, and it was really good to have that with me, on the day that I'd be explaining the most.
The teachers were all really lovely too, asking if they could come and talk to me at some point, and I got 2 offers from 2 teachers that they could come in and home tutor me, or hospital tutor me, and send me books and DVDs to entertain me. One was my English teacher, who lived right near Addenbrookes, and her house was welcome to us if we wanted a proper shower or a good meal. The other was my French teacher. As I was going into year 9 and I was doing Fast Track, I was doing my GSCE in French at the end of the year. It meant year 9 was going to be a really gruelling year for those in Fast Track, and for me especially now. Or maybe it'd be easier, since I was in a class of 1 all the attention would be on me. And obviously, year 9 is when you choose your options for your GCSEs. If I missed that, I wouldn't have had anything to do when I got back to school permanently, because I wouldn't have chosen which lessons I wanted to do for the next 2 years.
So it was quite a bad year to be hospitalised, but there was nothing I could do about it. So I was just going to get on with it and take it as it came...
It all started when I was in school, and I was cooling down from my athletics training, a few laps around the track, when I felt a bit of a twinge in my knee. It was kind of underneath my knee cap, at the bottom near my shin. But I didn't really even think about it, because it's guaranteed that you're going to have a few aches and pains after running. And the pain did go, right after I'd stopped my lap. So that was that and I forgot about it. I can't remember it actually getting worse all of a sudden, or when I started to get pain in my hip exactly, so it must've been really gradual, from my athletics training and PE and generally using my leg a lot.
I'm pretty active (not quite as much right now!) so it was annoying when my hip started to hurt when I went upstairs, or when I landed too heavily when I turned around or something. And eventually I started to sit out of PE and I didn't go to the clubs I usually went to. I didn't even take part in sports day!
After about a month of the pain, we went to the doctors, and they told us that what I was experiencing were a type of growing pain, called Trochanteric Bursitis. They put me on painkillers for 2 weeks, and treated me a bit like I was wasting their time. So I tried the painkillers, and when that didn't help at all, my parents and I went back to the doctors. This time they decided to put me onto the waiting list for the NHS physiotherapist, and they also referred me to a rheumatologist. But the waiting list was about 6 weeks for both of them, so my mum booked me in for a session with a private physio. She saw me really quickly, and we could tell she was good at what she did.
On my first session she just asked me lots of questions about when I first noticed the pain, what kind of pain it was, what did it stop me from doing, that kind of thing. Then I had to demonstrate the movability in my leg. The thing I had the biggest problem with was twisting my foot outwards. The physiotherapist told me she thought it was some kind of injury, maybe from the impact of my long jump or sprinting, but definitely not growing pains like the doctor had said. I had two more appointments with her before I went on holiday to Devon, and on the last one she mentioned that crutches might be a good idea, so that I could keep the weight off my leg. My physio also gave me lots of tips for keeping comfortable (that would also help my hip) on the long car journey to Devon, like changing the angle that my hip on, so that it wouldn't 'lock' into place.
The physiotherapist referred Jess for a simple X-ray before we left for our holiday which made it clear there was something badly wrong. We were re-called for an MRI scan soon after which confirmed the diagnosis of Primary Bone Cancer. Jess died 16 months later on the 8th December 2010.