Phoebe’s mum, Laura has shared her daughter’s story of strength, determination and resilience.
In August 2020, Phoebe started to complain about pain in her right leg. The pain was on and off, and as Phoebe has always been known for being quite dramatic and laughs along with us about it now, we took her leg pain with a pinch of salt and didn’t think a great deal about it. Even before seeking medical advice, we thought it was probably growing pains. She was 12 and she had shot up recently, so we assumed she would be ok.
The pains started to get more frequent, but still not every day. They were on and off, and particularly when she had done sport, so we still thought it was more than likely growing pains, made worse by doing sporting activities. Phoebe then started complaining that she was in pain at night and that it was stopping her from sleeping.
At the beginning of October, her dad rang the GP’s surgery and had a telephone consultation with the GP. There were no face-to-face appointments available due to Covid-19, and it resulted in a ‘growing pains’ diagnosis. We were told to give Phoebe paracetamol and ibuprofen to help with the pain, which we did.
We had no reason to think anything else because back then, we didn’t know of any of the signs and symptoms of bone cancer.
Unfortunately the pains did not go away, and in fact, were getting worse, despite giving regular paracetamol and ibuprofen as advised. At the beginning of November, Phoebe’s dad had another telephone consultation with the GP, who again said it was probably growing pains, but that they couldn’t rule out shin splints as another possible diagnosis, Phoebe was advised to avoid strenuous sports and to rest her leg and continue with the paracetamol and ibuprofen. Again, we weren’t overly concerned because it just never occurred to us that a sore leg could be anything more, or anything as serious as cancer.
In November 2020, we had a letter through to say Phoebe had an appointment at the Specialist Rehabilitation Centre in Preston. Phoebe had been referred by the GP to be fitted for insoles, as they suspected her leg pains were down to flat feet.
We rang the centre to find out more, and they said they had just received a referral from the GP. This is the first we’d heard of this, but we were relieved that she was finally being seen by someone face to face.
There was a cancellation, so Phoebe was seen the next day. At this point Phoebe did have a noticeable limp, which had developed over the past couple of weeks and the pain was now more constant. Phoebe was taken to the appointment by her grandparents, as we were both at work, and had no idea what was about to come of it. Phoebe limped into her appointment and the physiotherapist took one look at her feet and said, ‘I don’t think you’re here for flat feet there’s nothing wrong with them’. He asked Phoebe what her symptoms were, and after she had described them to him, he felt below her knee with the palm of his hand and immediately said he needed to get his consultant.
Luckily, as we know now, we had someone who recognised the signs and symptoms straight away.
The consultant examined Phoebe and asked her to go for an X-ray. The consultant explained there was some swelling, that heat was coming from the site of the leg pain, and that this needed to be investigated further. To us there was no visible sign of swelling, but they knew what they were looking for. Luckily, Phoebe was seen by professionals who knew exactly what to look for. If they hadn’t done that, that day, we may have gone months down the line.
I received a telephone call whilst at work from a very worried Grandma to say that Phoebe had been seen by a physiotherapist, who quickly dismissed flat feet and had called immediately for a consultant and sent for an X-ray. I thought maybe there was a break in her leg, still completely naïve to the possibility of anything as serious as cancer.
Phoebe was given crutches and told under no circumstances to weight bear on her affected leg.
Phoebe’s X-ray was done within the hour and Phoebe went back to school that afternoon. On my way home from work I received a call from the consultant to say he had reviewed Phoebe’s X-ray, and that he would like to see her in clinic the following morning, preferably with a parent.
In that instant, I knew something was wrong and instant panic set in.
I thought if she had broken her leg, why haven’t they just put a cast on. I asked for more information on the phone, but he said he wanted to speak to me in person and with Phoebe’s dad. I had major panic and did my first google of symptoms and we had no sleep that night with worry.
As Phoebe and I sat in front of the specialist the following morning I could see in his eyes that he was about to deliver bad news. Although he couldn’t give an exact diagnosis there and then he explained the X-ray was concerning and he had ordered further tests, bloods, an urgent CT and an MRI.
He asked if I had any questions and I asked what the worst-case scenario was, and having Googled the symptoms the previous evening, asked directly whether he thought this could be a sarcoma. He said yes, it was a possibility. At this point, Phoebe asked what a sarcoma was, and the specialist explained it was a type of cancer. Originally, they thought it could be Ewing sarcoma.
As hard as I tried not to cry it was impossible. Tears streamed down my face, which in turn made Phoebe cry too.
The specialist asked if we needed some time to take it all in, which we did. Phoebe had a CT and MRI scan the following week. We were called back to see the consultant within 24 hours of both. Sadly again the news was not what we had hoped, the scans only strengthened their suspicions. Everything seemed to move so quickly once someone picked up on it.
Phoebe’s scans were sent to the Royal Orthopaedic Hospital in Birmingham for review by an orthopaedic specialist because that’s where they had planned to do the biopsy. We then we had a week’s wait which felt like forever. After a week we got a call, and we were told that because of COVID-19, children were not being seen and that Phoebe’s scans would be sent to the Royal Victoria Infirmary in Newcastle. We were so worried we would have to wait another week, but had an amazing surgeon in Newcastle who called us as soon as he received the scans. It was literally that same day. An appointment was arranged for the following week and Phoebe had her biopsy on 2nd December 2020 and a Hickman Line was fitted at the same time.
Seven days later we were given the news that turned out world upside down. Phoebe had osteosarcoma.
Within days she was at Manchester Children’s Hospital who are her primary care giver, and she had repeat scans. She had a full body PET scan and they found out that it had already spread to her lungs. She started her first MAP chemotherapy 7 days later, on 14th December 2020.
Phoebe underwent 2 cycles of chemotherapy before her surgery, each cycle lasting 5 weeks. Limb salvage surgery took place at the RVI in Newcastle in March. The surgeon removed the primary tumour from Phoebe’s tibia, and because the tumour wrapped around her leg into another bone, a large section of that bone was removed also. They took away the knee joint which was attached to the tibia and a small section above the knee joint. It has all been replaced by a custom-made metal prosthesis.
Phoebe has suffered some permanent nerve damage and will never regain full use of her lower leg/foot but this is a small price to pay, and we were extremely grateful that the surgeon was able to save her leg.
April 2021 Phoebe finished cycle 3 of chemotherapy. She has 3 cycles left so we’re at the mid-point.
Despite the horrendous side effects of the chemotherapy drugs, she’s doing really well; her tumour pathology showed 99% necrosis and there were clear margins all around, which meant it had responded extremely well to the chemotherapy. She’s had to keep her leg straight for six weeks so far, so she’s quite frustrated because she can’t do a lot for herslf, and she’s eager to get back to normal as soon as she can.
Phoebe has been incredibly strong throughout this whole journey, and she has amazed us all with her determination and resilience. Whilst the journey is far from over yet, we are quietly optimistic that Phoebe will recover and have a very bright future ahead of her.