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Mia's story

Mia was diagnosed with acute lymphoblastic leukaemia just before her fourth birthday.  Her dad Andy tells their story so far:

Mia’s missed diagnosis

Shortly after her fourth birthday, Mia was very pale and suggested that her legs were aching. We took her to the GP twice, they blamed a virus and “growing pains”. On the Sunday at the end of that week, I took Mia swimming. As I was drying Mia’s hair, she said “ouch”, I assumed I’d pulled her hair but she mentioned a pain in her chest and then she had a small nosebleed.

This didn’t seem right so I took her to A & E at the local hospital. She had blood tests and we were admitted to the children’s ward to wait for the results. After a while, we were called into a side room and informed that Mia had leukaemia. It felt like a part of our world had just ended. My initial thoughts were that Mia was going to die. My wife and I were in pieces. We soon realised that we had to get on and be strong for Mia.


Strange sense of relief

Mia was admitted to hospital in Cambridge and I went to stay in hospital with her as we live about 40 miles away. She was given a blood transfusion and platelets initially due to poor blood counts. She was given IV fluids pretty much continuously in an effort to get her as well as possible. I remember that she was connected to a drip for the best part of 10 days.

On the very first afternoon in hospital, we met a specialist who suggested that it might be acute lymphoblastic leukaemia (ALL). It might sound stupid to say but we were actually slightly relieved. We’d read up about leukaemia and were aware that ALL was the most treatable type. The next day, this was confirmed. We actually started to feel slightly more positive as we knew that Mia’s diagnosis had the best long term outlook in terms of survival and hopefully a normal life.

We were then fortunate enough to meet Amanda, our clinical nurse specialist. We were given a treatment plan which is basically a plan of how they’ll get rid of Mia’s leukaemia. We found this really comforting, they knew how to treat her, this works 90% of the time so this should be no different for Mia.

Mia gets to go home

Within 10 days, we were told that Mia could go home! I was shocked, how can you just go home if you have leukaemia? The advances of medicine meant that given quite a few bottles of medicine, we could take Mia home and treat her there. We were so happy to be able to take her home. There were numerous hospital appointments and treatments which followed but given the severity of her illness, it was great to be able to be at home and have relative normality.

Mia was able to achieve nearly a full remission fairly quickly, however, the Minimum Residual Disease (MRD) tests still showed some abnormal cells so Mia had to proceed with a slightly more intensive treatment plan. We chose for Mia to have a port-a-cath fitted rather than a hickman line. We chose this so Mia could swim and bathe without the worry of keeping anything dry. Whilst the port has been amazing, we do have to go through the weekly pain of seeing Mia have a needle inserted into her chest. She does brilliantly but occasionally gets upset and angry, we don’t blame her for a second, it’s not fair so why shouldn’t she be annoyed?

Mia actually made it to her first day of school, less than one month after she was diagnosed. I was amazed that she could live a relatively normal life whilst still battling this horrific illness.

Serious side effects of Mia’s treatment

Within a couple of months, Mia started to lose her hair. It was slow at first but quickly got worse. It was devastating to see, it just made her look so ill even though she was doing quite well. Mia started to wear headscarves, baseball hats and even had to wear a cap at night time to keep her head warm.

As Mia got to the delayed intensification stage of her treatment, she did get quite unwell. She had three infections at the same time, she had rhinovirus, a fungal lung infection and a port infection. She had to be admitted to hospital for two full weeks to be able to treat all of her infections. Unfortunately, the fungal lung infection required a longer course of treatment. She had to have IV antibiotics at the local hospital every day until the lung infection cleared.

This meant 100 continuous days we had to go to hospital. This was hard, every day my wife had to take Mia and her younger sister Keira to the hospital while Mia had treatment. This was after school so was very disruptive to home and removed any notion of a normal life for everyone. I’d often take dinner to them on the way home from hospital just to make life a little easier. We spent small fortunes in petrol, parking and even getting them food/drink. Mia’s weight was also beginning to become a concern. We were told that if Mia’s weight went below 13.5 kilograms, then she’d have to have a feeding tube inserted.

Mia’s on the mend

The maintenance stage of treatment soon began. This was much less intensive and Mia has been a lot healthier and stronger over the past eight months. As of May 2019, Mia has put on around 50% of her bodyweight, her hair has grown back to nearly its original length and she looks well. In terms of lifestyle, Mia can attend school most days, she’s physically active and can do nearly all the things her friends can.

Many doctors and nurses have said how well Mia has done and commented positively on our abilities as parents. It’s actually a team effort, it wouldn’t work if we didn’t all try to make it work. Mia is super brave and has amazing control of her emotions, we’ve worked really hard to support this. It’s important to stay strong together, talk to each other and support each other at all times. No matter how hard it gets, it’s important to stay calm and treat Mia just like any other child. She still needs boundaries, support, guidance, role models, attention and love. No matter how much you want to give in and just let Mia have everything and do whatever she wants just to make her feel better, you can’t.

Looking forward to ringing the end of treatment bell

Mia’s treatment is due to finish in December 2019. Whilst we don’t want to get our hopes up to high, we have booked a holiday to a Center Parcs Winter Wonderland the weekend before her treatment is due to finish. It’s important to have things to look forward to and hopefully this will be an opportunity for the greatest celebration to signal the end of Mia’s treatment. Mia should ring the End of Treatment Bell the week before Christmas, this would be the greatest gift we could ever wish for.

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