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Daisy L's story

Daisy was diagnosed with acute lymphoblastic leukaemia on 5th September 2016 at the age of four.  Her dad Andrew tells their story so far:

It all started with a purple rash

Monday 5th September 2016 was going to be a special day, it was our daughter Daisy’s first day in reception year at primary school. Daisy had turned four just a week before. A short time before this we had noticed some changes in Daisy, she had started to feel tired when doing simple things like walking to the shops with us. On the Saturday before I was due to take Daisy to gymnastics class, while getting her ready I noticed a purple rash on her chest. It didn’t fade under the glass test so I immediately took her to the local walk in centre which concluded in a diagnosis of ‘burst capillieries’ and nothing to be concerned with. Going back to Daisy’s first day of school, we were all excited and off Daisy went for what was supposed to be a very special day. In the afternoon my wife Emma took Daisy for a GP appointment to look at her eye as Daisy had been getting regular styes. While there, Emma explained the other symptoms Daisy had been experiencing so the GP took a look. At this point I would like to thank the doctor for being a wonderful ‘old school’ doctor as she didn’t mention at the time what she knew but sent Daisy and Emma off to have some blood tests at the General Hospital. The doctor knew what was behind these symptoms.

The worst day: diagnosis day

I was on my way home from work when I received a phone call from my wife to say I should make my way to the hospital as Daisy is having some tests and they may be there a while. At this point Emma had been told what Daisy was being tested for but she didn’t want to tell me as she knew I would have panicked. September 5th 2016, sometime around 6.30pm, Emma and I are taken to a room with a consultant and a nurse bearing a box of tissues. Nothing quite prepares you for receiving the news that your child’s blood test results have come back positive for leukaemia. Daisy had to spend the night in hospital with Emma. I went off to gather some bits they would need for a hospital stay, my head in a total spin! The next day Daisy gets transferred to another hospital for a bone marrow test which confirms she has acute lymphoblastic leukaemia. We are given a ton of information and asked to make so many decisions and Daisy is immediately started on treatment to begin the fight against this terrible illness that has taken a hold of our little girl.

 

Ringing the end of treatment bell

I could write for hours about every step that you go through, throughout the course of treatment your child endures while being treated for cancer but for one it is rather difficult to re-live and also I would like to finish by summing up and ending with some positivity. After two years and two months of intense treatment, sickness, hospital visits and stays, fevers, cannulas, Hickman Lines, NG tubes, MRI’s, X-Rays, CT scans, transfusions, hair loss and stress I can now happily say. On 5th November 2018, Daisy got to ring the end of treatment bell! Thank you to all the nurses, consultants, play workers, charities and all the other families we have met along the way that have helped to make this journey a whole lot more bearable than it might have been. A big thank you also needs to be given to our three year old Bonnie. This has all taken over a lot of her little life so far and she has just been amazing in keeping me grounded for one thing. Thank you to our family as a whole who’s love and support has been immeasurable throughout this.

End of Treatment Bells are placed into hospitals for children and adults with cancer to ring after their gruelling treatment.                                                                                                                                                                                                                                                                                                                                                                                   

Update May 2019

It’s been six months since our Daisy got to ring the end of treatment bell. During this time we’ve had her routine clinic appointments but also some unfortunate admissions due to high temperatures and bugs! In fantastic news, Daisy is now back in full time school and she’s back at swimming lessons which she wasn’t allowed while her Hickman line was in. Daisy’s energy levels are up, as well as her appetite!

Daisy had her six month review at Addenbrookes on 21 May and all in all the consultant was happy with Daisy’s progress. Her height and weight are on track and her checkup was all good. I asked the consultant what Daisy’s chances were of relapse and was happy to hear at this point it’s less than 5% and within another six months it will be less than 1%. Daisy will continue to have clinic appointments to monitor her progress but these will become less frequent as time goes on.

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