Yasmin’s mum, Louise, has shared her daughter’s inspirational story of strength and despite everything Yasmin was going through, most days she would still have a smile on her face.
Yasmin’s symptoms first started around September 2019. The main symptom was an aching pain in her left leg, particularly around the top of her left knee. This started very intermittently and seemed to disappear as quickly as it came on, and with Yasmin doing kickboxing (currently a green belt) and swimming, we put it down to growing pains or a strain.
I recall Yasmin complaining about the pain on New Year’s Day as we had been for a walk with our puppy at White Horse Hill, and by the end of our walk Yasmin was in a lot of discomfort. Once again, the pain subsided. However, a few weeks later having been to kickboxing on the Tuesday and attending a sports camp on the Wednesday, on the Thursday evening in January, Yasmin was climbing up the ladder on her bed and said she felt a sharp pain and called me upstairs. There was an obvious swelling in her thigh and the next morning I phoned the GP right away.
Sadly, Yasmin was misdiagnosed by our GP, and after 2 consultations over 3-4 weeks, we were told it was a ruptured muscle or strain. It was only on the advice of a sports physiotherapist we were introduced to, via Yasmin’s kickboxing instructor, that we went to A&E where it first became apparent just how serious it was.
On arrival to A&E we were called through for an assessment after explaining her symptoms and informing them a sports therapist told us to come in. Firstly, they did an ultrasound and could see from this there was a growth of some sort and the doctor said he wanted to do an X-ray too as he said the bone didn’t look right. After reviewing both the ultrasound and the X-ray, we were told we’d been referred urgently to the Nuffield Orthopaedic Centre. They said they’d have the specialist review the images and contact us the next day. I had a phone call at 7.30am the next morning, saying Yasmin had been booked in for an MRI and chest X-ray that afternoon.
Following the MRI and chest X-ray, we were called back in again on the Monday, after an agonising wait over the weekend. It was during this Monday morning meeting, on the February 10th, we were told that it looked like Yasmin had osteosarcoma of the femur but would require a biopsy surgery the next day.
A week after having the biopsy, Yasmin was officially diagnosed with osteosarcoma in her left femur, but thankfully the chest X-ray was clear, and it hadn’t spread beyond the primary tumour site.
Things moved very quickly from here, with lots of meetings to discuss next steps and the surgery to have her wiggly fitted (Hickman Line for the chemo) and her ovary surgery, for the removal and cryopreservation of one of her ovaries for future fertility.
It was such a lot to think about, but our life as we knew it had turned upside down.
I will never forget that meeting when we were told exactly what we were dealing with and remember so vividly how Yasmin sobbed her heart out; sobbing so hard and asking her consultant if she was going to die. It was during this meeting we were told about the chemotherapies Yasmin would be put on, and that she would require limb salvage surgery. The surgery would involve the removal of Yasmin’s left femur, which would be replaced with a magnetically adjustable titanium endoprosthesis, which would be adjusted as she grew.
Yasmin’s treatment and surgery all took place at the John Radcliffe, Oxford Children’s Hospital.
Kamran’s Ward became our second home, where we were pretty much inpatients for 3 weeks out of 4 for 10 months. Yasmin’s first round of chemo started on March 6th, one week before the world went into lockdown.
Her treatment included 6 cycles of MAP with 3 rounds of chemotherapy in each cycle, (Cisplatin, Doxorubicin and Methotrexate). After the first two cycles Yasmin’s surgery was scheduled for 4th June. The aim by this stage was to shrink the tumour to make it easier to remove. It was a huge milestone as following surgery we knew “the cancer” or most of it was out of her, but we also knew we had the huge task of getting Yasmin back on her feet and to learn to walk again. 4 more cycles of chemo followed, plus the additional immunotherapy. But, so far, we’re relieved to say, it’s worked out as planned, the horrific treatment has done its job - there is no evidence of disease (NED), and she is progressing well with rehabilitation.
Yasmin experienced significant side effects from the chemotherapy. In addition to nausea and vomiting (which fortunately was soon under control with lots of drugs) the most significant side effect which couldn’t be prevented was the mucositis. Yasmin had it so bad that her mouth and lips were so full of ulcers she couldn’t eat or could hardly drink. It soon became clear from after vomiting that she also had ulcers in her throat and down her oesophagus, as she started throwing up blood. As a result of one period of sickness and mucositis, Yasmin lost 5kg in a week. One time she was in so much pain from the mucositis she had to be admitted and was put on an IV of morphine, but she then also suffered urinary retention as a side effect of the morphine and ended up having a catheter fitted and switched onto oxycodone, which was such a traumatic experience for her.
Yasmin also suffered with constipation and at one time was taking six sachets of Movicol a day to try and relieve it. As treatment went on, other side effects included the need for countless blood and platelet transfusions. Her platelets dropped frequently, and she suffered extensive nose bleeds too, which meant she ended up having to have her nostrils cauterised. Yasmin also started on Mepact immunotherapy part way through treatment, which thankfully as time went on, she coped with and tolerated very well. However, during the first few weeks she suffered chills and significant shaking, like mini seizures and spikes in temperature, but these soon passed, and she felt better after a cuddle and a power nap.
With diagnosis and treatment during a global pandemic our new family and friends became the other families we met on the ward. These parents and children helped us through some of the darkest days of the chemotherapy side effects and the unknown. Yasmin was blessed to have so much kindness and support around her that it made our journey a little more bearable.
Yasmin’s chemotherapy treatment finished in December 2020, and our consultant called us on Christmas Eve with the news we were praying for, Yasmin was cancer free. But with the addition of mifamurtide immunotherapy treatment, she was finally wiggly (chemotherapy tube line) free in May 2021.
It’s still early days but the physical impact seems to outweigh the emotional or psychological impact of her treatment. She struggles with not being able to run around properly with her friends in the school playground, she misses not being able to do her usual sports and activities or join in PE like she did before cancer. This is mostly now due to restrictions with her leg length, knee bend range and reduced strength, but the progress she has made just in the past year is remarkable, and I am sure in another 12 months she will be back doing all those things she has missed so much, and just being a carefree kid.
We have been in total awe of how she’s handled everything. For a now 10-year-old going through what she has and most days still managing to have a smile on her face, is unfathomable really!
Yasmin’s strength has been what’s kept us so positive, her resilience and determination is like nothing I have ever seen before. And even during her odd “off day” she soon bounced back thanks to our family and friends, plus many incredibly kind and generous people in our local community who supported us in one way or another.
Our advice to others who receive a similar diagnosis, is it’s inevitable that it will feel like the end of the world, you’ll feel that your family has been dealt the worst of the worst kind of blows, but with a positive mindset and determination, you’ll get through it, you’ll get through the horrendous treatments and their side effects, you’ll even get through surgery and the additional challenges that come with it, especially if you have to learn to walk again. But your journey and your resilience to power through and beat this thing, will someday be someone else’s inspiration to get them through and help them to realise they too can beat it.
Awareness is so important. Yasmin was sadly misdiagnosed by her GP. If GP’s were better educated on primary bone cancers we’d have had a quicker diagnosis, but we were fortunate that we had a second opinion from a physiotherapist, otherwise our story might have had a very different outcome. I hadn’t even heard the word osteosarcoma before our diagnosis, so greater awareness in general is important for early diagnosis and to ensure your concerns are heard, with facts you can share.