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Five years on, our family is living free from the restraints of blood cancer

4th Sep 2020

Lisa reflects on the impact that leukaemia has had on her son Hugo, and their whole family. From the path to diagnosis and the grueling side effects of treatment, to Hugo finally finishing treatment. Now, they look forward to embracing every moment of life.

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My son, Hugo, was two years old when he stopped walking, he wouldn’t bear weight on one of his legs. Over the course of five weeks, he became pale, tired, his glands were swollen and he lost his appetite.

He had four visits to the GP and a hip X-ray. The doctors couldn’t put their finger on what was wrong. He was diagnosed first with irritable hip syndrome, followed by a virus and then finally, a blood test showed it was leukaemia in July 2015.

It was overwhelming for our family

Me, my husband and older son, Henry, who was six at the time, were all so desolate that little Hugo had such a huge battle in front of him. But I’m a mum, and you just have to get on with it.

So that’s what I did.

Hugo had six months of intensive treatment. That meant chemotherapy taken orally, intravenously and in liquid form, as well as steroids and antibiotics.

The side effects were awful, especially as he was only two. He had sickness, night sweats, mood swings, hair loss, exhaustion, pneumonia, liver failure and was unable to walk for nine months.

Hugo underwent maintenance treatment for two and half years. He endured four-week cycles including hospital stays, intravenous and oral chemotherapy, and antibiotics. There's been daily medication, blood and platelet transfusions, x-rays, scans and tests.

Because of research, Hugo received the most effective treatment

Research led by Professor Christine Harrison involves studying specific features of childhood acute lymphoblastic leukaemia.

This means doctors can tailor care to the individual, ensuring children like Hugo get the most effective treatment for their specific cancer – giving every child the best possible chance of survival.

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Trying to give our sons a normal childhood

The length of treatment and the constant uncertainty was very hard to deal with. The diagnosis has had an impact on the whole family, not just Hugo. His big brother, Henry, struggles with the amount of attention Hugo gets, and it’s very hard for him to fully understand.

When it wasn’t possible for us to be at home with Henry, he would stay with his aunt and uncle, or his granddad. He still needed to go to school, do his homework, see his friends. We wanted him to have as normal a life as possible.

I found myself having conversations with Henry about blood cells and death. That was something I never imagined I would ever do! I think both my children have lost part of a normal childhood, which is very sad.

Ringing the end of treatment bell

Hugo finished treatment in 2018. He’s back at school now and his walking has improved. He no longer has to use a wheelchair and instead walks the 20 minutes to school and back.

That was a huge milestone for us.

He really enjoys school. He has a lovely friendship group but he’s falling behind a bit. He struggles with verbal comprehension due to the chemotherapy he’s had as a child.

However, he’s a happy little boy, he’s very caring, thoughtful and sweet natured. He’s been through a lot in his seven years.

Having the adventures we never could before

Since he’s finished treatment, we surprised the boys with a trip of a lifetime to Disney World in Orlando, Florida. It was something that I thought of during his treatment, but I didn’t want to tell the boys just in case we weren’t able to go. You never know what’s around the corner.

We also surprised the boys by picking up a puppy. They’d spoken about getting one, but we couldn’t during Hugo’s treatment. They named him Bertie.

https://media.bloodcancer.org.uk/images/Hugo_at_Disney.2e16d0ba.fill-530x395.jpg

Before Hugo became ill, I’d never heard of Blood Cancer UK and knew almost nothing about the disease. But then his nursery held a fundraising fun day to raise money and the charity were so kind and helpful.

They provided teddy bears and T-shirts for the children and I started to use their information and online support, and I began writing a blog for their website.

I’m so grateful for everything they have done in terms of research. I know that one of the projects they fund ensured that Hugo didn’t have to endure any more chemotherapy than absolutely necessary. I’m so grateful for that.

I’m so excited to look forward. There is a whole world of new possibilities out there, so many adventures for us to enjoy, free from the restraints leukaemia has placed on our lives.

I am ready to embrace and enjoy every single moment.

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