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Dates stick in your mind, and my story is no different. On 26th October 2016, my very active six-year-old girl Jasmine, who was a regular attendee at five different clubs a week, started to complain her right hip and groin were aching. Three days later, she couldn’t walk on her leg at all and was in extreme pain. A call to 111 followed and we were told to go to Birmingham Children’s Hospital with the suspicion of an inflamed hip, a common ailment in children of Jasmine’s age.
The hospital agreed with that suspicion and we were told to give her pain relief and to head back on the 1st November to see how she was. The date came and she was still the same, so blood tests swiftly followed. This is when we had the diagnosis of acute lymphoblastic leukaemia (ALL). Other than the problem with her leg and groin, there were no other obvious symptoms that would point to this diagnosis.
Everything goes through your head when you hear ‘leukaemia’ and ‘cancer’. Will our little girl die or survive? What treatments can they give her? What are the survival rates? How will my little girl cope with all the treatments? My husband and I were devastated; we broke down and cried. Then we had to go and tell our 20-year-old daughter Charlotte the devastating news that her younger sister has cancer. She nearly collapsed on the hospital floor. After that, we had the horrific task of telling her grandparents the news, and also our close family and friends. You could say it destroyed our world. How as a family do we move on from this and how do we cope?
Jasmine was taken straight to the ward, where she started treatment. Her first minimal residual disease (MRD) results were at 3% when they should have been 0.01%. This was extremely high and the doctors said they hadn’t seen this before. Jasmine went on Regimen C, the highest intensity treatment, as part of the UKALL 2011 trial.
Jasmine was extremely upset at the beginning of treatment as she hated taking medicines, hated needles, hated plasters being taken off, and all this was aggravated by the treatment. When she was on steroid treatment, she suffered very bad mood swings and had a huge appetite, which would keep her up all through the night crying she was hungry, even though she wasn’t. Then, when off the steroids and on chemotherapy, her appetite went to lack of appetite, sickness, aching limbs and restless sleeping.
She also lost her hair very quickly, which surprised us all. We thought she would be devastated losing her very long hair, but she coped really well and even asked us to shave it because it was falling out so quickly. She asked me to shave my head as well so we would look the same. So, l did, and raised over £900 for Leukaemia CARE, and as l had long hair l donated my hair to the Princess Trust too. I decided to raise the funds for Leukaemia CARE because it’s a national charity on my doorstep and thought it might help others like us who are going through this difficult time coping with leukaemia.
Our life has been turned upside down. You cannot plan anything because she could get a temperature and end up in hospital, or she has that many hospital appointments you don’t seem to get any free time. However, the support from our family and friends has been amazing. Jasmine’s community nurses that come to the house to change her Hickman line dressing are amazing too. They are so friendly and always give her lots of hugs. Jasmine has to divide her treatment between Worcestershire Royal Hospital and Birmingham Children’s Hospital. The Worcestershire Royal Hospital nurses are brilliant, always making Jasmine and us comfortable.
After four months, she is much better at taking her medicine. Her Hickman line means a lot of treatments and blood tests are through her wiggles, so no more needles.
Jasmine is hopefully about to start Interim Maintenance, we are just waiting for her bone marrow results. At the moment, she is doing really well. There’s not much sickness and she’s eating well, but her next round of treatment is more intense, so that could all change. She has weakness in her legs, which sometimes give way, and she will fall down or get very tired when walking, but she always has a big smile on her face.
It’s hard to describe how we’re feeling as we are virtually on autopilot, but we just hope that Jasmine makes a full recovery. It’s this hope that keeps us going, as well as Jasmine’s determination, her smile, and her strength.