Below her mum, Gemma, shares her story.
Phoebe experienced pain mildly, in her right leg. Pain that built up over days and weeks, which wouldn't go away at night and stopped her from sleeping.
She fell on ice while out with her friends in January 2021 and bruised her knee. The bruising went away but in March 2021, Phoebe started to complain that she was experiencing pain in the same area and that the bruising felt like it was deep inside her leg.
On April 20th, Phoebe messaged me to ask me to make an appointment with the GP because the pain wasn't going away and was getting worse. She explained that she was in constant pain for the last couple of weeks, but it hurt most when she walked and went up the stairs, and it still hurt when she was sat down or laid in bed.
I called the GP to make an appointment the following week. On the Monday, the day after a walk where the pain was so bad she had to keep stopping, I pulled up to the school to drop her off. Phoebe burst into tears, saying she couldn't face going up the stairs because the pain was so terrible.
That night we took her to the A&E department at the local hospital. We saw a lovely doctor in urgent care who said he thought it was Osgood-Schlatter disease (growing pains) but would refer her for an urgent x-ray the next day.
We attended the x-ray and were told that someone would be in touch with the results. The following day I received a call from the MRI department calling Phoebe for another scan. As I was driving to work that morning, I got another call from our GP.
She never actually said that Phoebe had cancer, but she said that we would take it a day at a time. The diagnosis was the last thing I expected to hear.
That afternoon I received further phone calls from the consultant asking us to go in the following day for more scans, blood tests, and a meeting with him. The next day was a long day - scans, meetings, blood tests, more scans, and then the news that the consultant expected osteosarcoma. Finally, that evening, we were admitted to the ward.
That night as Phoebe and I laid in unfamiliar beds on an unfamiliar ward, she asked me if I was pregnant. We found out six days before that we were expecting a baby. In the weeks that followed we travelled down to the Royal Orthopaedic Hospital (ROH) in Birmingham for more meetings with consultants, scans, and a biopsy.
After Phoebe's biopsy we met with her chemotherapy consultant at Manchester Children's Hospital to determine when she would start chemotherapy. We had a couple of weeks reprieve and as we were supposed to get married in 2020, but couldn't because of Covid, we got married in that break. Not in Italy as originally planned, but in our local church with a reception for 30 people at Pizza Express, Phoebe's favourite place to eat! That day was a good day. We mini-mooned in the most beautiful cottage in Bamburgh, Northumberland.
Those weeks gave use all the strength and distraction to keep enjoying life as much as we could.
In June 2021 Phoebe had her Hickman Line inserted and started the first two cycles of MAP chemotherapy (methotrexate, doxorubicin, and cisplatin) pre-surgery. As Phoebe was fairly well after her first cycle of chemotherapy, we were able to go to the Lake District for the day in July. The Lake District is one of her most favourite places. We took her best friend, Grace, and went on Grace's family boat on Windermere. That day was amazing. I remember feeling so happy seeing Phoebe laughing and smiling.
We saw everything from a completely different viewpoint and appreciated every single second of that summer's day.
During Phoebe's first round of chemotherapy, we had a wonderful bay buddy who was about the same age as Phoebe. He was diagnosed whilst on the ward, but he never stopped smiling and caring about others. Although we knew we were on an oncology ward, we still believed that everyone would come in, have their treatment, and then leave. So, when our bay buddy passed away suddenly four weeks into Phoebe's chemotherapy, it was heartbreaking and a total shock. It shook the foundations of our world, of what we thought we knew. We still think about him often as well as his mum, dad, sisters, and brothers.
Going back onto the ward the first time after that was difficult. Every ward stay was hard until Phoebe went in for her second cycle of chemotherapy and began to suffer terrible side-effects, particularly mouth ulcers (mucositis). The decision was made to delay her chemotherapy while she was put onto a morphine infusion, because the pain from the ulcers had become so unbearable. That resulted in an almost two week stay on the ward, broken up by a move from the second floor onto the third floor. We always felt that the long stay was a turning point in how we felt about the ward.
Our Teenage Cancer support worker, Macmillan nurse and team of nurses on the ward made each visit to the hospital so much more bearable. They were wonderful, inspirational people who became more like friends. We went from hating it, to feeling a sense of home-from-home. A safe place, a happy family.
In late August we headed back to ROH for Phoebe's surgery to remove the tumour which affected her knee and part of her lower leg (tibia), replacing them with a titanium implant (endoprosthesis). The surgery went very well and Phoebe celebrated her 14th birthday on the ward. She celebrated by getting out of bed and walking for the first time post-implant!
Just a week after returning home from Birmingham we were back in Manchester to start the last 4 cycles of chemotherapy. These rounds were much harsher on Phoebe. We had many more unscheduled hospital visits when she was having treatment due to underlying infections, temperature spikes, and low blood counts. Those were the worst because it made it impossible to plan everything and it felt like the whole world was carrying on around us and we'd just stopped. Phoebe missed a few important parties; we missed a wedding we were supposed to go to.
The emotions around missing out are hard to deal with when you're sat in hospital feeling miserable and seeing photos on social media of the celebrations. It's not that you begrudge them, it's that you resent not being able to be a part of them. But we tried hard to stay positive.
During round three of Phoebe's chemotherapy whilst in Manchester, Phoebe's baby sister, Zara, decided that it would be a good time to arrive. My waters broke whilst I was on the ward, but as Phoebe had finished her course that week and had just needed a blood transfusion, we were able to get home before I had to go back into hospital to be induced. By then, the end of her treatment was within touching distance, and Zara's arrival kept her going through the tough weeks that followed.
Again, Phoebe experienced more unscheduled hospital stays due to underlying infections that couldn't be pinpointed, always rolling her treatment finish date back. She was fed up with laying in a hospital bed all day, but she managed to stay positive on the good days and made her sense of humour.
Finally, on the 31st January 2021, the three of us (Phoebe, myself and Zara) headed onto Ward 86 for Phoebe's final round of chemotherapy, and on 3rd February she rang the "End of Treatment" bell. Her treatment lasted 8 months in total. She still had twice weekly physiotherapy appointments at Manchester Children's Hospital up until May 2022, and in June 2022 she did a week of intensive physiotherapy at ROH in Birmingham. She's had five follow-up appointments since finishing treatment and, so far, the scans have been all clear.
Phoebe missed out on so much socially and school-wise whilst she was having treatment, but she is well and truly making up for it now! She has been able to do things she never thought she would be able to do again - going to gigs, days out with friends. She even went on a sailing trip to Scotland with the Ellen MacArthur Cancer Trust and that was such a big thing for her to do.
It pushed her out of her comfort zone, but she gained back the independence and confidence she thought she had lost.
She has not let her "disability" limit her. She has made a phenomenal recovery following her treatment. She can't run a marathon (but then she wouldn't choose to!). She can't really do any extreme sports, and trampolining is a big no-no, as are rollercoaster rides where your feet dangle.
What gave Phoebe strength? Phoebe's baby sister has given her strength. Her faith in God. Her determination to beat it for the bay buddy that we lost. Her determination to not let the cancer change her life or make her disadvantaged. The steroids she was on made her incredibly hungry and I think Deliveroo made some good profits out of us during her treatment. Choosing what food she'd enjoy on her chemotherapy stays seemed to give structure to her days, in contrast to all the uncertainty. Phoebe has the best group of friends around her... particularly her best friend, Grace, and Grace's family.
As a family we feel like we're experiencing a more "normal life". We still have the same ups and downs as any other family. Among the "ups" was pumpkin picking, Zara's first birthday, and a break to the Lake District. The "downs" involved having to say goodbye to our beloved Dalmatian, Chops. He was diagnosed with osteosarcoma in September 2020 and had an amputation.
It was the strangest thing when Phoebe was diagnosed with the same cancer just 7 months later. I felt like they really related to one another with what they went through, so when he left us at Christmas, we were all devastated. We are still trying to adjust to life without him.
Our advice to others is to keep going. I know there's little choice other than to keep going. It's like everyone is fitted with a coping switch that flicks on when you are delivered a cancer diagnosis. Some days are hard, but they don't last forever. In the words of Charlie Mackesy: "one day you will see just how brave you have been."
I am incredibly thankful to the healthcare professionals who picked up Phoebe's cancer so early on. I sometimes wonder if we had taken Phoebe to the GP instead of A&E, whether the osteosarcoma would not have been picked up until much later. From diagnosis to now, we have been hugely supported by the Bone Cancer Research Trust. Raising awareness and supporting the Bone Cancer Research Trust can truly save lives.
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