Eleri’s mum, Bethan has shared their story following a diagnosis of osteosarcoma
The first symptom that Eleri complained of was a pain in her leg waking her at night. She was an avid gymnast and had been practising her routine whilst simultaneously trying to ‘get her splits’ – we put it down to a sprained muscle. With hindsight, Eleri had been displaying other symptoms that we would never have associated with cancer. She had been very tired leading up to Christmas 2017 and her behaviour had become difficult. Again, we assumed her tiredness was because it was the end of the school term and, as I was working full time, she had been going to so many after school clubs. We decided that I would hand in my resignation, take Eleri out of some of her clubs and let her relax at home. Hopefully that would combat her fatigue and in-turn help her behaviour settle down.
We visited a number of GPs on a number of occasions, each time detailing textbook symptoms of primary bone cancer.
The first was during the Christmas holidays on a trip to see our family in Wales. As we sped down the M4 to Newport with the Celtic Manor looming on our right-hand side, Eleri woke screaming complaining that her leg was hurting. She always slept in the car and sometimes got herself into awkward positions which would cause cramp or pins and needles, so we weren’t overly worried, but resolved to take her to the doctor anyway. The doctor listened, noted what we were saying, made Eleri walk around his office and examined her leg. He concluded that there wasn’t anything wrong and if it happened again to take her to accident and emergency. Eleri skipped out of the office and that afternoon we went to an indoor play area where she had a wonderful time ‘zorbing’.
After Christmas Eleri continued to complain of pain in her leg. Again, we visited the GP and the examination seemed very thorough. She checked Eleri’s legs, knees and hips. She booked an X-ray because she felt there might be some under rotation in the hip that could be causing the problem. If that wasn’t it, it was likely to be muscular and we should go to see a paediatric physiotherapist.
The X-ray showed that there were no problems with her hip – we now know that the picture stopped just before the highest point of the tumour. Had Eleri’s whole leg been X-rayed they would have detected the tumour.
We resolved to wait for a physiotherapy appointment. Eleri was now waking most nights complaining of pain and had started to lose weight.
In the week beginning the 26 February 2018 the UK was gripped by ‘The Beast from the East’. It was particularly cold weather front that saw temperatures plummet. I received a phone call from school saying that Eleri had become hysterical when taking part in a PE lesson. She had been doing shuttle runs whilst warming up for netball. The mixture of the cold air and pressure on her leg had meant that it had become incredibly painful to the point where she was screaming in agony. I booked another emergency appointment at the GP and took her that afternoon.
At this point, I didn’t know what to think. Eleri had been complaining about her leg, but it was inconsistent.
She seemed to complain at what I call ‘transition’ times. When she had to clean her teeth, shower or change her clothes, she would complain and say her leg was hurting but didn’t seem to complain at other times. Sometimes it hurt and sometimes it didn’t. Also, she never seemed able to tell us exactly where the pain was. Sometimes it would be in her knee and sometimes it would be at the top of her leg. We were also having issues with her eating – some days she would eat hardly anything no matter how we tried to persuade her. I thought it could all be behaviour related and had started to look into child psychologists. My thoughts that all this was behavioural seemed justified when she won a gymnastics competition. How could she have anything major wrong when she could compete and win?
My scepticism was further amplified at the visit to the doctor after the incident in PE. Again, the GP did a thorough examination. There was no obvious swelling and the movement in her leg seemed completely normal.
When the doctor asked Eleri to walk, she did and showed no signs of a limp, even though by this point she was limping on it inconsistently.
The doctor also put pressure on the area where Eleri said the pain was and Eleri didn’t seem to flinch. The doctor was unconvinced there was any need for further X-rays and said she would write to physiotherapy in an effort to bring forward the appointment. We left with me questioning Eleri’s truthfulness and her adamant that she wasn’t lying.
The remainder of that week saw Eleri deteriorate quickly. She ate very little and was lethargic. She would come in from school and fall asleep on the sofa. She didn’t want to do anything or go anywhere.
On Saturday 3 March 2018, after more behaviour incidents, I took Eleri to accident and emergency where they eventually X-rayed her right femur and picked up, what they thought, was an old fracture above the knee.
The orthopaedic team were called and as we could not think of a trauma that could have caused this injury, they said they would be referring us to specialists for further investigations.
We walked out of the hospital not realising that the orthopaedic registrar already suspected cancer and was putting the wheels in motion to confirm his diagnosis.
An appointment was made for Eleri to have an MRI on Friday 9 March 2018. After the scan we would be going straight to fracture clinic where they would give us the results. I knew it was serious, not only because of the pace at which everything seemed to be moving, but also because the registrar had advised me that it would be good if both myself and Rob were there for the results. I made the mistake of asking if this was serious and if we needed to be worried about anything, to which he replied, ‘we think it could be cancer’.
The MRI confirmed our worst fears, Eleri not only had a form of primary bone cancer but the tumour had already spread all the way up her right femur.
The next few weeks went by in a blur. We were referred to the John Radcliff Hospital in Oxford. We met with orthopaedic surgeons who would be organising the tests to confirm diagnosis and an oncologist who would be overseeing her treatment.
Eleri had a biopsy under general aesthetic which confirmed that she had osteosarcoma. She had a CT scan of her chest and a bone scan to check if the cancer had spread anywhere else in the body. The good news was that she didn’t have any tumours in any of her other bones, the bad news was that she had spots on her lungs.
She had the metastatic form of the disease. We were devastated. Once diagnosis was confirmed, Eleri had a Hickman line fitted and ovarian cryopreservation to protect her future fertility.
Eleri had chemotherapy, her right femur removed, and it replaced with an endoprosthesis that would grow wither her as she got older. After a few months on the first line protocol, Eleri was switched to second line treatment when the spots on her lungs continued to grow. Second line seemed to work, the tumours stopped growing and she was able to have surgery to remove the biggest of them from her right lung.
Our hearts were broken when, eight months after her cancer became stable, the lung metastases returned. This time they were growing at an alarming rate. The only option left was palliative chemotherapy to try and slow the spread of the disease.
We decided not to put Eleri through the stress of more chemotherapy that wasn’t going to save her life. We wanted to enjoy the time we had left without constant trips to the hospital. Eleri hated treatment. Apart from the normal side effects of chemotherapy she also had lots of other complications which made treatment particularly difficult. Everyone’s cancer journey is individual and Eleri’s was arduous. This was the main reason we decided not to pursue palliative chemotherapy. We couldn’t face making her do something she hated when it wasn’t going to save her life.
The decision was unbelievably difficult, but ultimately the right one for Eleri. We spent those last few months going on day trips, holidays and letting Eleri do what made her happy.
As we moved through treatment, we could see that it was having a traumatic effect on Eleri. She developed a fear of needles and her behaviour deteriorated further. It wasn’t just Eleri who struggled, both Rob and I found the process difficult and at times really needed support.
We approached the Bone Cancer Research Trust and received support from their team as well as psychological support available to patients at the hospital where Eleri was treated. But as with all NHS services, it was stretched to its limits. It was difficult to get consistent support for Eleri from the hospital and almost impossible for any family members to access it. I realised that if we needed psychological support but couldn’t access it easily, other families were probably having the same difficulties. With the help of two very supportive friends, we decided to set up Shine Bright Support to raise funds and support families ourselves.
Shine Bright is still very small and are trying to find our way, but our first year has been a success. There are only three of us and we juggle running the charity alongside work and being mum to our children.
We have raised enough to fund a mental health worker one day per week at Great Western Hospital in Swindon. The mental health worker will offer a confidential, one-to-one space for families of children diagnosed with cancer, to access bespoke professional support. We work closely with the nursing team at Great Western Hospital who have advised us along the way that having someone to support families and their mental health during oncology clinic hours would have the most impact on patients and their families.
We want to get as much information out to families as possible and develop peer-to-peer support groups where families can talk to others experiencing the same ordeal. We want to incorporate support for those who have experienced trauma, those who are going through a journey of bereavement as well as those going through the horrific reality of a child having cancer in the present. We also envision having a telephone line run by a mental health-trained first aider to pick up on signs/signals that a person/family may be struggling. The aim is that they will then be referred to a mental health professional who can offer them professional support.
As Shine Bright Support continues to grow, the Bone Cancer Research Trust Support and Information Service are developing their links with Shine Bright, with the aim of being able to access more psychological support for families in hospitals over time for primary bone cancer patients.