Ashton's Story

Ashton was only 12 when he was diagnosed. He's my only child, my everything. Being a goalkeeper at Crewe Alexandra and playing cricket, Ashton was no stranger to knocks and bumps. In October 2020, Ashton made a save during football training and ended up in the physio room with a bag of ice on his leg. Doctors informed us that he had pulled a muscle. After three weeks of physiotherapy we noticed that the swelling on his lower right leg had increased slightly. The club physiotherapist suggested a trip to A&E, just to be on the safe side.

When we arrived we were sent to the hospital GP, who said Ashton had severely torn his muscle. I expressed my concern as I thought a pulled muscle would slowly be getting better by this point, not worse. We were sent home and told to rest.

A week later I was not convinced we had been given the right diagnosis. I suspected Ashton had a broken leg. After a Zoom call to my GP, and with the support of the club physiotherapist, we agreed that something wasn't right. We were sent to hospital again, but this time to a ward, bypassing A&E.

On 28th November 2020, Ashton had an X-ray and an ultrasound. It was during the middle of the pandemic and we were grateful to be seen. Several doctors filled the room and asked me to tell them what had happened so far. "While Ashton gets dressed would you like to step outside?" The moment those words left the doctor's mouth I knew something was wrong. Ashton has a large mass on his right fibula and he's going to need treatment.

I don't know why, maybe it was the doctor's tone and persona, but the first thing I said was 'worse case scenario, is it cancer?' and he replied yes. The shock I felt in that moment, the utter devastation, fear and panic, is nothing like I have ever felt before. I took a moment to compose myself, I didn't want Ashton to know until we had a course of action. I am grateful that I took this time to process the diagnosis. We were transferred to the children's oncology ward at the Royal Stoke University Hospital that evening pending further tests. The next day Ashton had a CT scan and MRI, confirming suspected osteosarcoma.

"I remember being awake that evening, thoughts and fears rushing through my mind. How could I live without my son."

We were sent home to rest, told not to Google anything. Ashton was to be transferred to Birmingham Children's Hospital for a biopsy the following week to confirm his diagnosis. The following day the hospital called. We were told that Ashton's Covid test, which was taken as part of the new protocol, was positive. He had no symptoms. We were now locked down, isolated at home for 14 days. I was beside myself and my sister came to stay with us. We were isolated from friends and family at a time when we needed them most. I was confused and felt frustrated that Covid protocol was being put ahead of Ashton's life. We had just been told that Ashton's cancer was high-grade, meaning that it was fast growing and aggressive, yet we were told to stay home.

Two weeks later Ashton was in London to have his biopsy. By this time his tumour had grown, and was now around 16cm in length. Birmingham had closed their surgical ward due to Covid, so we travelled to the Royal National Orthopaedic Hospital (Stanmore) which would now be Ashton's surgical hospital.

In December 2020, Ashton was told he had osteosarcoma. We spent the previous month preparing him as much as we could, trying to normalise the 'cancer lingo' makes things less frightening for him.

We explained that doctors may call his swelling a 'lump, bump or tumour', they may call his treatment 'medicine, drugs or chemotherapy' and they may call his condition an 'illness, disease, or cancer.' We wanted him to know that it didn't matter what terminology was used - he had a poorly leg and the doctors were going to do their best to make it better. When Ashton asked 'do I have cancer mum' our world came crashing down around us. You haven't got cancer Ashton, we told him, your leg has cancer and your body needs to fight as hard as it can to help your leg get better.

No matter how hard I tried to prepare him, it would never be enough. I'm glad I had the previous month to come to terms with what was happening, as it meant that I could give him my all when he needed it most. I was better equipped to put my emotions aside to support him and explain what was going to happen next.

The next four weeks were a whirlwind of scans, tests, bloods and operations in preparation for chemotherapy to start in January. On Christmas Eve we were at Birmingham Children's Hospital having his Hickman line put in. Everything went well and we were lucky to make it home in time for Santa.

Ashton was scared about having his line in; at 13 he was worried about looking different, but after the operation he said it wasn't as bad as he thought. He was happy with it because it didn't hurt and looked discreet.

In January 2021, two months post-diagnosis and after Covid and Christmas delays, chemotherapy finally started. Osteosarcoma offered a uniform, outdated treatment across the board. High dose methotrexate, doxorubicin, and cisplatin. A toxic cocktail of drugs with an endless list of side effects. Ashton was in hospital for three weeks as the first four doses of chemo hit him hard.

Sickness set in straight away and he soon had a feeding tube. He was devastated as this was a very visual symbol of his illness. It was uncomfortable, but after a couple of days he was glad he had it as we were able to administer his meds and food easily. Ashton went on to have another eleven NG tubes. He became a bit of a master, even helping the nurses to fit his own tubes!

At each stage of the treatment he astounded everyone with his resilience and positivity. Sickness, skin lesions, nose bleeds, ulcers, blood transfusions, palette transfusions, multiple infections, fevers, hair loss, headaches, nerve pain, weight loss, extreme fatigue, stomach pains, chest pains, breathing pains... the list of side effects was endless.

We were practically living in hospital with hardly any time at home. Hospital became our home, and the nurses became our family. No visitors, no contact with anyone outside our hospital bubble.

The sheer tiredness of hospital life, the beeping machines, the observations, treatment, and the personal care Ashton needed took its toll. Yet the only place I wanted to be was by his side.

No matter how hard our day was, we always thought of three reasons to be grateful for each day. Some days it was the cup of tea we had that morning, or Ashton's favourite 'I've only been sick three times today.' We had to try and keep our spirits up. Gratitude helped. While we had treatment options, we had hope, and if we had hope we were grateful and kept going.

Days were hard, very hard sometimes. The finishing line felt so far away, and the fighting energy we had in the beginning was slowly fading. We had to believe that better days were coming.

In March 2021, after two cycles of chemotherapy and three months in treatment, we were told that Ashton's leg couldn't be saved.

Treatment hadn't shrunk the tumour and it was now encompassing his main nerves, veins and arteries in his lower leg. Ashton was in more pain and was using walking aids.

On 23rd March, Ashton had a through-the-knee amputation. He felt his dream of being a professional footballer had been taken away along with his leg. His identity, his health, his dreams were all shattered.

Yet he came back fighting.

Twelve months of chemo and immunotherapy, six operations, and Ashton's treatment concluded. By January 2022, his lung nodules were stable. We were told that there was no evidence of the disease to report. Today, he's in the gym, back at his football club, dedicated to his weekly physiotherapy and is determined to get back to his sports.

My advice to others would be that it's important to let your emotions out. It's normal to feel angry, upset, scared... let the emotions flow and cry it out. But don't forget to top yourself up, come back fighting and remember there is hope. You have a whole army of doctors, nurses, surgeons, family and friends behind you. Remember that you are here now, and you are a fighter. You can get through this.

Take it each day at a time, deal with what's in front of you and don't let the statistics scare you. You are a person, not a statistic, and your journey and experience is unique to you.

Reach out to other families, the Bone Cancer Research Trust... there are people waiting to listen and offer support. You may feel alone in this, but please know there are people there for you. You can move forward together with a whole community beside you.

At each stage of treatment, as parents we took time to process any news before we explained it to Ashton. Parenting a teenager through cancer treatment is especially difficult, and emotions are high. I found that I was able to work through Ashton's thoughts and feelings from a calmer, better-prepared place. This meant I could give him more stability and comfort when he needed it.

Ashton's hair has grown back, he's awaiting a new prosthetic leg - a C leg - and he looks healthier than ever, We know our journey hasn't ended yet. Whatever the future holds, we have decided to live our lives with less worry and more freedom. We are grateful more than ever for the little things.

Scan days are always scary, that's why scan days are our treat days! We still have lots of appointments and rehabilitation ahead. We still have tough days as we are dealing with the after effects of the trauma we experienced, but we are getting through it!

"Life is good again and we keep going. No matter what life throws at us, we know if we can get through this, we can get through anything."

Vicky, Ashton's mum

Supporting Ashton's Fund

The amazing #TeamAshton had an incredible start to 2022 by introducing their "100 in January Challenge" - asking 100 people to raise £100 by doing 100 of anything they desire! From 100 squats a day to 100 saves in goal, we saw it all!

Join #TeamAshton to fund vital research into osteosarcoma. Just click on the link below to donate or start your own fundraiser.

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News

​New research aiming to make immunotherapy an effective treatment option for osteosarcoma patients
New funding scheme launched to offer additional support of ongoing clinical trials

Research

Preventing the Growth and Spread of Osteosarcoma
Sarcoma Awareness for Foundation Doctors
Oxford Sample Collection Infrastructure Grant

Fundraising Pages

Text BCRT ASHTON TO 70800 to give £5

You can make a donation or pay in funds raised by cheque, payable to Bone Cancer Research Trust, to:

Bone Cancer Research Trust, 10 Feast Field, Horsforth, Leeds, LS18 4TJ.

Please ensure you make it clear that the donation is for Ashton's Fund so that your donation is allocated to the correct fund.

100% of donations to Ashton's Fund will go to osteosarcoma research.