New Patient Story Anonymous

Back in 2014 I had a Sunday job at my local dressage yard, so when I began to have aches and pains in my right shoulder I dismissed it as pulled muscles and ‘growing pains’. After Christmas the pain hadn’t gone away and more symptoms began to appear. The inside of my upper right arm was unmistakably numb and I had begun to twitch quite vigorously. After our concerns had heightened the most worrying appeared: my right eye lid had dropped significantly and my pupils were noticeably different sizes. However, the most worrying factor was that all my symptoms manifested on my right side and this became very alarming. I was sent to school with an emergency doctor’s appointment scheduled that afternoon.

After an optician’s test to rule out issues with my eyes, my doctor sent me to my local hospital for further eye tests and an MRI scan.

Monday 27th of January I had my MRI. I had barely gotten dressed before a doctor appeared in front of my mum and I and demanded we go straight up to the children’s ward. Being only thirteen this was all mildly exciting, until we heard the words: “We have found a ten-centimetre mass in your daughter’s chest…” – my chest. That night I was urgently transferred to Birmingham children’s hospital onto the Teenage Cancer Trust ward.

In the following days I had bone scans, X-rays, CTs, biopsies and some bone samples taken. All these tests led to the diagnosis on February 6th – Ewing’s Sarcoma of the upper right chest. My tumour was wrapped around my first rib. My pain was due to the tumour pressing on my nerves, and the numbness and eye droop were due to nerve damage. Within a week I had a central intravenous line fitted and I had my first session of VIDE chemotherapy.

With my tumour so tightly compacted around major nerves and veins surgery was out of the question. And so, the possibility of me receiving Proton Therapy treatment was on the table from the start. At this point in time the only centres the UK had access to were in Florida and Oklahoma in America. I was prescribed 6 treatments of intense VIDE chemotherapy followed by 6 less intense VIA sessions. But my reaction to the chemo was incredible – after only 4 cycles my Ewing’s had reduced in volume by over 80%. Surgery was now an option and by this stage my case had been assessed by the committee and I had been approved for Proton Therapy treatment in Oklahoma City.

An eight-hour surgery successfully removed my tumour, my first rib and a small section of my lung. After a rest period of a few weeks I was whisked away to Procure Proton Therapy Centre, Oklahoma City for proton treatment. My Mum, Dad and I were to stay there for three months while I received 28 sessions of therapy. The American experience was incredible and I am so lucky to be granted such a new and pioneering treatment. My chemotherapy continued while I was there every three weeks for three days. Meanwhile every weekday I had a 45-minute session of proton therapy.

The actual experience of proton therapy is very similar to conventional radiotherapy (I would believe). I had three pieces of equipment made for me upon arrival: an aperture, a compensator and a body mould. The mould was to hold me still in the position the team wanted me in so that I would lie comfortably but immobile.

In January 2015, my treatment ended. My scans came back clear, and they’ve remained so ever since.

As I was only thirteen at the start of my treatment, I never thought to consider the issue of fertility. We were not aware of the devastating effect chemotherapy can have on your ovaries and I was never offered the chance to freeze my eggs. However, recently I was funded for a trial in Oxford to cryogenically store one of my ovaries. I am one of the first and youngest to try this technique, and we’re still waiting for the results as to whether my follicles still hold eggs after being damaged by ifosfomide. But every day advancements are being made and so my hopes are realistically high.

September 2017