Katherine's parents share her story

In August 2007 our oldest daughter, Katherine had just begun her first year in nursery. She was enrolled to attend 3 morning sessions per week with the intension of extending her time at school during the course of the year.

She had always been a healthy and active little girl who participated in a number of activities in and around Stirling including Active Stirling's jumping beans classes and Musical Minor's in Bridge of Allan.

She had been complaining of 'stiffness' in her right knee for just over two months which we initially thought to be over stress of the joint because her discomfort seemed to be most acute after physical exercise. Friends and teachers also suggested that it might be growing pains. After waking one night in severe pain, her father (an orthopaedic surgeon at SRI) took her to see a colleague for an assessment and x-ray the following morning.

Katherine was referred to Edinburgh Sick Children's Hospital where after a short time she has a biopsy done of her tibia (shin bone) which confirmed the existence of a Ewing sarcoma, a form of primary bone cancer. We were devastated. Both being of a medical background we had a good understanding of the implications of this diagnosis on both Katherine, our other daughter Robynne and our lives in general.

On the one hand we found it difficult to accept Katherine's condition. Only 30 new diagnoses of Ewing's are made each year in a population of 55 million in the UK. Most of those cases are found in young people (more commonly boys), aged 14 to 20 years. Katherine's diagnosis seemed all the more bizarre to us being a 3 and half year old girl.

On the other hand, we knew that the diagnosis had been made relatively early. We knew that treatment would have to be aggressive because of the nature of the cancer but if she showed a good response to potent chemotherapy and surgery there was the possibility of avoiding radiotherapy. The tumour in Katherine's leg was very close to the knee joint which is one of the areas which gives rise to the normal growth of the bones in the lower leg. Radiotherapy could damage this area and result in a significant deformity and therefore disability for Katherine.

Katherine has been through a gruelling 10 months of chemotherapy and surgery. Chemotherapy every 21 days has been punctuated by long admissions to hospital between each treatment due to infections or the need for blood transfusions. Her surgery was for us one of the most terrifying and difficult moments of this experience. She underwent a 'limb sparing' procedure which entailed removing the portion of the bone with the tumour, clearing it of visible signs of disease, giving it very high intensity radiation treatment and then reaffixing it back into the normal anatomy of Katherine's leg. This was the first time that a procedure of this kind had been performed in Scotland.

Her Stookie was removed after 14 weeks and she now has quite a lot of physiotherapy to help her to improve her gait. She still has chemotherapy very 21 days and is due to complete her treatment by the end of September. All of us are looking forward to the time when she can get back into the routines and habits of a normal 4 year old.

We support The Bone Cancer Research Trust in order to help raise awareness of this rare but aggressive group of cancers. Unlike Katherine, many young people and children affected by these conditions are diagnosed late due to presenting with vague symptoms that result in inappropriate treatments and/or delayed referrals.

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