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Family Stories – Lexie Bolsover

Lexie was first diagnosed with osteosarcoma in April 2019 after finding a lump in her lower left leg. She had a rare genetic disorder, Rapadalino Syndrome, which is often linked to two types of cancer, including osteosarcoma.

After finding the lump, Lexie’s parents, Sue and Brian, contacted the geneticists who were already working with Lexie for her genetic disorder and arranged an x-ray through their GPs. This was the start of their cancer journey

Lexie and her mum spent most of the first year of her treatment staying on ward 4 at the Great North Children’s Hospital. Lexie had 5 months of MAP chemotherapy treatment and then, in September 2019, an operation to remove left fibula, muscles and nerves from her lower left leg. These were replaced with muscles and nerves which were removed from her back and grafted in to her lower leg. She spent 10 hours in surgery, which felt like a life time away from her for Sue and Brian. The surgery was followed by more chemotherapy which she finished in March 2020, only to be told in April 2020 that the cancer had spread to other areas of her body.

By November 2020 the cancer in Lexie’s leg was so extensive that she had to have her leg amputated and a prosthetic limb created. Lexie’s spirit, determination and sense of humour helped to see her through these immense challenges; her mum told us

Sue said: “They did a biopsy and confirmed our worst nightmare of cancer in her left leg. Then we met Quentin [consultant oncologist at Great North Children’s Hospital] and she started chemo straight away.”

“She was discharged just 4 days after her amputation operation, which is unusually fast. They cast her with a limb and she had it home within 5 weeks; she’s so headstrong and very determined. The majority of the time she puts a great face on. She hasn’t seen friends for 3 years now. The staff, the nurses and doctors have become more her friends than her real friends.”

“I remember the ward being a really happy place when we went in for the first time, not what I expected. We’ve had some great laughs with the nurses, Lexie loves to prank them. She’s a bit sassy.”

In December 2020 Lexie started a new drugs trial, “It’s meant everything that she’s been able to access the trials, I don’t think she’d be here otherwise. It has given us a lot of hope.”

We just take it step by step. She’s due another scan soon and we take each day as it comes and enjoy the quality times. The downside to this is that we don’t know if there are any more drugs after this. We’re still in the unknown. We’ll keep going and keep fighting, it gives us hope each and every day.”

Lexie’s brother Owen, only 18 months older than her, has been a great support. “He’s really into mountain biking but his activities have dwindled away, spending time at home with her or travelling up to see her. They are very close, fight like normal brother and sister, but they are very close.”

The challenge of dealing with cancer and COVID

The family were already feeling isolated when COVID hit. “You literally protect your children from everything, a cold or cough, COVID is no different for us. Life is just the 4 of us in the house, we don’t really have a social life. We have a caravan but we don’t go out when we’re there because we’re so scared she’ll get an infection. Everyone else has done it for the last year (isolated) but we’ve done it for years. You’ll sacrifice anything just to make sure they’ll stay well or as well as they can be.”

Working life has also been a challenge for the family, who run their own business. Fear of bringing infections home and the pressures of having to travel to hospital, or stay over for weeks on end, makes life very difficult. “The first year we were like two single parents, one staying at hospital with Lexie and one at home with Owen. Other parents at the hospital became our support network. It’s been really difficult when we’ve been in since COVID hit because we weren’t allowed to socialise. Also, lots of those parents we got to know at first are not there now because their children have passed away.”

A new focus for Lexie was to raise funds for childhood cancer treatments and trials to find new drugs. “We need to get some new treatments for kids, drugs that are not so harsh on their bodies.”

Lexie designed some hoodies and bags to sell, and only a few weeks on raised over £600 for research.

Lexie’s comments – “The nurses and doctors are lovely, kind and funny, this has helped with my time in hospital. Swimming is an important part of my rehabilitation and it gives me some of my life back.”

Update June 2021

Lovely Lexie sadly passed away in early June 2021.

We heard from her family that Lexie loved being part of our launch as Children’s Cancer North and was really delighted when she saw her pictures on our website and on our social media.

Her family have given us permission to keep her story here, for which we are very grateful. As a small team it’s impossible not to be affected by such a sad event – Lexie was vibrant, motivated, resilient young lady.

Her passing sadly highlights that whilst around 80% of children do survive their cancer, 20% of children don’t. It’s what drives us all in our mission to make life better for children and the families affected by this horrible disease.

Rest well, Lovely Lexie

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Family Stories – Lexie Bolsover

The challenge of dealing with cancer and COVID

Update June 2021

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