“Megan would be so proud of what we are doing” – Jane’s story
Megan Kelly was diagnosed with stage 4 Ewing sarcoma at the age of 18, following two years of poor health. Despite undergoing gruelling treatment, she passed away 18 months later in December 2020. In her memory, her family and closest friends set up Megan’s Rose Of Hope, a charity dedicated to making a difference in the fight against childhood cancer. Here, Megan’s mum, Jane, shares her story and explains why supporting the ICR’s vital research is so important.
Megan first became ill in September 2017. She was 16 and had just started sixth form. It began with a virus that lasted over three weeks, she could not shake it off. This was followed by virus after virus, along with constant urine infections. She missed so much school due to ill health that by Easter 2018, she was asked to leave.
By this point, I was concerned. Megan had had more visits to the GP, walk-in clinic and A&E than my other two children combined. Over a period of months, she was diagnosed with glandular fever, scarlet fever and urine infections. With school no longer an option, she started a part-time job, but she continued to feel unwell, lacking energy and losing direction.
I was worried. My gut feeling was that something was seriously wrong. I had fought my own battle with Hodgkin lymphoma when I was 32. It had taken a year before I was correctly diagnosed, and I recognised much of my own experiences in what Megan was going through. But the rational side of me wanted to believe the doctors each time we were told she just had a virus. It was much harder to think that my teenage daughter could have cancer, and it was certainly not something I wanted to hear.
‘I feared there was something seriously wrong’
By 2019, I was exhausted from battling with different doctors. Megan was poorly yet again, this time with hypothermia. I remember saying to the doctor at the walk-in clinic that something needed to be done, that I feared there was something seriously wrong. But she just rolled her eyes and told me that parents could sometimes be neurotic when it came to their children. I started to think that Megan would need to be seen privately to be taken seriously.
In June 2019, we went on a family holiday. Megan, who was usually a sun-worshipper and constantly in and out of the pool, spent the whole holiday sleeping indoors. We barely saw her. By the time we came back at the end of June, she was extremely poorly again.
By now, Megan was 18, so she went to the GP by herself. She called me to say that the doctor had examined her stomach, and after doing so had asked Megan to phone me immediately so I could come to the surgery. She would not tell Megan what was wrong. When I went back with Megan, the doctor explained that she could feel a mass on Megan’s kidney and that she suspected cancer.
The next six weeks were spent waiting for appointments, scans and biopsies. Eventually, Megan was referred to a paediatric unit, and within 24 hours she was given a bed, PET scan and had a Hickman line fitted. A week later, she was diagnosed with stage 4 soft cell Ewing sarcoma, which had probably been there for two years. The cancer had already spread to her lungs and lymph nodes. She was told she would never be able to have children and that she only had a 30 per cent chance of surviving more than five years.
Her diagnosis was not a complete shock to me. Through the power of Google, I already suspected it. The worst thing for me was knowing that she would have to go through chemo. Having been through it myself years before, I knew how brutal it could be.
‘Megan never felt sorry for herself’
I had a very open relationship with all my children, so it was easy to talk to Megan about everything. She was my youngest and my little bestie. The hardest conversations were the ones around her not ever being a mum. She was great with kids and I often believe that had she survived, she would have fostered. She decided to have an ovary removed and stored in the hope that, at a later date, it might be possible for her to have her own children.
Megan was feisty, strong, resilient and solution-focused. She listened to her diagnosis, had a cry, then stopped and said: ‘So what are we going to do about it?’. Of course, there were dark days, but by and large, she was very positive. She never felt sorry for herself.
She started chemo a few days after her diagnosis, and after five days of it she was very poorly. This was the only time I ever saw her break. The chemo regime was on and off for nine months, and because her cancer was stage 4, it was the most brutal treatment. She only ever had a maximum of five days at home at a time. I had always promised myself that I would never cry in front of her. I would be her cheerleader, her punchbag, her advocate, but it was heart-breaking to see her so beaten by the treatment.
Nevertheless, she got up and she did it. She put everything into it. We created a big calendar and crossed off each treatment as it was completed and that helped her to get through it all. Just before Christmas, we were told that the secondary cancer in her lungs had gone, and we were thrilled.
In February 2020, Megan had surgery to remove her left kidney and the tumour that was on it. It was a long operation, and she spent four days in ICU, before continuing chemo. She started to become very weak. She couldn’t really eat and lost a lot of weight very quickly. She required a feeding tube and could no longer walk so needed a wheelchair. It was an extremely frightening time for all of us. In my heart, I think I knew at this point that Megan was not going to make it, but my husband still had a lot of hope.
In June, she went for a scan and we were told that she was in remission. We had always been told that she only really had one chance at treatment, and that if the cancer returned, there was nothing else that could be done. For the next couple of months, Megan was very hopeful. Despite the isolation we all faced due to Covid, she was happy. She was still incredibly thin, but her hair started to grow back and she was able to walk again.
Then, in August, she started being sick and her routine scan was brought forward. The consultant called us in straight away and I immediately knew that she suspected a relapse. It was the worst news: Megan’s cancer was back and there was nothing else they could do for her. We were told she had a year to live.
Incredibly, Megan did not even break a sweat. Despite promising myself that I would never cry in front of her, I broke down. But she just turned to me and said: ‘You know what, mum, I’m fine. I’ve been thinking about this moment a lot and I am at peace with it. I am ready’. Her maturity was remarkable.
She was put on a low dose of chemo to keep the cancer at bay, but after a couple of weeks, she became more unwell. The doctor took me aside and told me it was not working and that Megan only had a few days left. We made the decision not to tell Megan this news. We took her home. It had always been her wish to die at home.
Megan passed away on 9 December 2020. She was 19.
Megan had always been incredibly kind and generous, and in her short life had raised thousands of pounds for charity. During the few months that she was in remission, she talked about doing a skydive to raise funds to help other young people dealing with cancer. She also wanted to organise a rave in the summer of 2021. These events both went ahead, despite Megan not being here – and raised £26,000.
Megan wanted to raise awareness around childhood cancer in a bid to improve diagnosis rates. She also wanted to be able to provide welfare to children with cancer and their families in the form of small grants, for example for days out or to help those struggling with their bills.
To honour her, we set up Megan’s Rose of Hope in January 2022. Our first event was an auction, which raised around £6,000. Since then, our auctions have grown and we have raised more and more money to support young cancer patients between the ages of 11 and 25.
‘Better outcomes will only come from investment into research’
Recognising that children’s cancers are woefully underfunded, we also wanted to support research into this area and, having studied The Institute of Cancer Research’s website, we felt that this was the right fit for us. We wanted to fund research that was specifically directed at cancers that affect young people, and we know Megan would have wanted the money we raised to make a difference. We were recently able to donate £22,000 to support Professor Janet Shipley’s lab and it is wonderful to be able to see exactly where that money is going.
It is clear that when money is invested in cancer research, cures and treatments can be found that will allow better outcomes for patients. I say this knowing that I was able to have successful treatment for my own cancer, thanks to previous investment into Hodgkin lymphoma research. Research into childhood cancer is underfunded compared to adults, because relatively few children are diagnosed with cancer compared to the adult population. We need to develop kinder, better treatments for children with cancer to be able to save more lives.
My daughter had an incredible life ahead of her. She was articulate, beautiful, kind and funny – and I often wonder where she would be right now. I can only hope that she would be incredibly proud of what we are doing in her name.
We are world leaders in the study of cancer in children, teenagers and young adults and have made huge strides over the past decade in improving treatment options for children with cancer.