Tia’s story. Diagnosed with leukaemia at just four years old.

Tia was diagnosed with leukaemia at just four years old after experiencing neck and leg pain. Tia went back and forth to the hospital for several visits before she had a blood test, which showed that something was wrong. Tia was transferred to Great Ormond Street hospital where her parents were later told she had leukaemia.

Tia sadly relapsed twice and has had to have a stem cell transplant so has been in and out of hospital for six years now. Throughout her experience, Tia and her family have been supported by Young Lives vs Cancer. Their social worker has supported them both emotionally and financially to help face everything cancer has thrown at them.

Tia was diagnosed with leukaemia at just four years old

“It went from going into the doctors and not knowing what’s going on with her to being rushed in, ambulance, bloods, going to a different hospital and then great ormond street hospital after a few days. I had dropped her off at nursery and told her what happened. A couple of hours later I got a phone call from the same doctor she said ‘a professor’s going to call you, it’s something to do with her bloods’. An hour later, this haematologist called me and said ‘i need her in right now’ he said ‘pick her up from nursery and bring her straight away’ he said ‘i need to run some bloods again, she has anaemia’. I still didn’t think it was cancer, he said she has anaemia. I said ‘why the urgency?’ he said ‘we don’t know why she has anaemia, it might be something sinister’, I said ‘i don’t know what sinister means, I don’t know what you’re implying’ and he said ‘i need to do another set of bloods’

“An hour later I had a few medical professionals ask for my husband to turn up with me to meet us in a room. When we went into the room they told us ‘we’re sorry to say Tia has leukaemia’ That was within a few hours – the official diagnosis didn’t happen until we went to GOSH a few days later.”

Tia’s parents wanted to make sure she knew what was happening as well so decided to tell her once they got the diagnosis.

“I explained to her ‘your blood cells specific ones are not working properly’, I tried to say it in a child friendly language so she was able to absorb the information. We said it was leukaemia. She knew straight away everything that was going on with her.”

Tia was put on a treatment plan to have chemotherapy for two years. Her mum and dad would switch between staying at the hospital with her and looking after their son, Tia’s brother.

“We alternated so I would sleep with Tia and my son would be with his daddy and then I would go early in the morning so my son sees me in the morning then my husband would swap then I’d drop off my son then come back and be with my daughter so we’d both be with tia for a few hours during the day and in the afternoon I would go and pick up my son prepare dinner put him to bed and then I would swap with my husband so he would sleep at home and I would sleep with Tia again and we did that for a good two years.”

Tia’s parents had to stop working to juggle childcare, which left them with a drop in income on top of the extra costs they also had to face while Tia was in hospital.

“There’s all the food you have to eat out, you’re not at home to prepare and then on steroids she’s always craving all sorts. It was difficult initially we had some savings we used that and then we had to take benefits.”

Tia’s family have been supported by a Young Lives vs Cancer Social Worker since she was first diagnosed. They have been able to help the family navigate the impacts of a cancer diagnosis such as the extra costs.

“She helped with all the forms for the blue badge and dla – even getting the blue badge that was really helpful for needing to park outside GOSH because you can’t take public transport. When you’re so stressed out you don’t have the time and you’re not in the right mind set to do all these things, to know what you can and can’t get, it’s nice to know someone else is watching out for you, advocating for you and supporting you.”

Author: Emma

Posted on Monday 18 September 2023

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