Alice’s dad Nick, kindly shares his daughters story of determination and strength that he describes as ‘True Alice Fashion’ after her diagnosis and treatment of osteosarcoma at just 11 years old, 6 months before starting secondary school.
In February 2017 Alice was diagnosed with osteosarcoma, 5 months before her diagnosis she started having pain in her knee and back. Initially we thought it was growing pains but the pain didn’t go away so we took Alice to see our GP. The GP thought it was potentially growing pains or a trapped nerve but the pain worsened, especially in the night. Alice also started having night sweats.
We decided to take Alice back to see our GP and she was referred to a consultant and had an X-ray of her back, but they didn't find anything of concern and they thought it was potentially a trapped nerve so referred her to a physiotherapist, but things were still not improving. After several appointments an MRI scan was carried out and that is how the tumour in her right leg was identified and diagnosed as osteosarcoma. 20 appointments and 5 months after Alice’s symptoms started.
Once diagnosed, take as much advice as you can from the medical experts, keep on top of understanding the medication and be forceful if you believe something to be wrong.
Alice underwent surgery to replace the affected femur and have it replaced with an endoprosthetic titanium alloy rod. Her treatment plan was over 29 weeks and included 18 sessions of Chemotherapy, which she completed October 2017. The weeks in between treatments were often spent in Peterborough City Hospital as Alice often had a high temperature or needed blood transfusions. Alice is continuing on immunotherapy (Mifamurtide) at Addenbrookes, until April 2018, and will be 48 sessions in total.
Alice has difficulty adjusting to walking since her leg operation but she is having regular physiotherapy to help and is progressing very well. She can now walk for short periods without her crutches. Alice also ticks off each day of her treatment plan.
Alice had a lot of time off from her primary school as her pain worsened ahead of her diagnosis and was rarely well enough to attend in the build up to her diagnosis. After her diagnosis most of her time was spent in either Addenbrooke's or Peterborough Hospitals.
Despite all of the pain she suffered and the time she missed from school Alice still managed to take and pass her 11+ exams and grade 4 ballet and modern exams, even with what we later discovered was a crack in her femur caused by the tumour.
Alice started at Kesteven and Grantham Girls' School (Margaret Thatchers old school) at the beginning of January 2018 on a phased return. Her immunotherapy treatment knocks her back a bit and she has to take a bit of time off school to recover.
The school have been wonderful in helping Alice return on a phased basis. Alice has spent the last year being pretty inactive so it was always going to be a major change to return to school life. As well as having little energy, she also has to use her crutches to get around.
Alice’s immune system is still very low and she also still has her Hickman line in until April for her immunotherapy treatment to be administered. The school are aware that Alice needs to be kept away from children with colds etc. but this is no easy task in a school with 1,200 pupils!
I love having some normality back in my life and getting back to school to see my old friends and to meet new ones. I love learning and I enjoy being back in a classroom.
The teachers have been very understanding and allowed us to choose the most suitable lessons and times for Alice depending on how she is feeling on a particular day. As time goes on, so too does the amount of time that she spends at school. She was recently given the option to miss a forthcoming maths test as she had not attended any of the lessons. In ‘True Alice Fashion’ she said that she would very much like to take the test.
We hope that by Easter Alice will be back to school full time.
Alice’s other major passions in life are music and dancing and she has a talent for both. She is grade 5 piano and also plays the flute and guitar; and has also attended the Grantham School of Dancing since the age of 3
During her long stays in hospital, Alice missed her dancing very much. The dance school has become a second family to her and she spent a lot of time watching dance video's on her iPad. The dance school kept in touch with her throughout and even held a Danceathon for her and bought her some lovely presents. Alice's guitar teacher also arranged a concert in Alice's honour and she had some wonderful gifts bought for her and the family including tickets to see the Royal Ballet perform The Nutcracker.
Although Alice won't be able to dance to the standard she achieved before having her diagnosis and operation to insert the endoprosthetic titanium alloy knee joint, the dance school are very keen to work with her to ensure that she continues her dancing and adapt routines around what she can do. She may not be able to jump and twist in the future like she did before, but she is excited to see how far her dancing can take her with her new 'bionic' leg.
We will be working alongside the Bone Cancer Research Trust to increase awareness of primary bone cancer amongst medical professionals. Alice had 20 medical appointments before she was diagnosed, we feel too many in the medical profession are unaware of the symptoms so diagnosis gets delayed - this needs to change and we want to help make this happen.
DID YOU KNOW?
Mifamurtide (Mepact) is an osteosarcoma drug that is given after surgery and chemotherapy. Mifamurtide currently can only be given to patients whose osteosarcoma has not spread (metastasised) and who are between 2 and 30 years old.
Mifamurtide works by stimulating the immune system to attack the osteosarcoma cells.
The Bone Cancer Research Trust were heavily involved in the campaign to have Mifamurtide licensed by The National Institute for Care and Health Excellence (NICE) in the UK. We continue to be proud that we helped bring about this additional treatment option for patients that increases their chance of a positive outcome.