I thought my toddler had a cold until the doctor started shaking

Freyja HarphamPublished Nov 10, 2024, 2:00pm

Freyja, her husband and two kids in a park — Billie was diagnosed with acute lymphoblastic leukaemia (Picture: Freyja Harpham)

The consultant’s hands were shaking as they told my partner Zac and I that our one-year-old daughter, Billie, had leukaemia.

It felt like the world had stopped. With Billie lying in my lap, I silently cried.

Fight or flight mode quickly kicked in, and it’s not left us since – even more than two years on.

Back in November 2022 – a month before her diagnosis – we thought Billie had a sickness bug. When she stopped eating, we took her to A&E and they said she had gastroenteritis.

Once we got back home, she became increasingly unwell over the following days and I knew something was ‘off’, but couldn’t quite pinpoint what it was.

When she stopped sleeping at night – she’d always get a reliable 12 hours – as well as developed a temperature and cold-like symptoms, we went back to A&E. But we were sent home again, with it being put down to a respiratory viral infection.

Within 24 hours, we were back and – after a series of tests, including a full blood count – Billie was diagnosed with acute lymphoblastic leukaemia (ALL). It was devastating.

Telling my parents was the most difficult phone call I’ve ever had to make. I couldn’t quite believe the words that were coming out of my mouth.

Billie as a baby, sitting on a hospital bed smiling, with a bald head and a tube coming out of her nose and throat — Suddenly, our little girl couldn’t tell us what she needed or wanted (Picture: Freyja Harpham)

In the aftermath of the diagnosis, I had to quit my job as a research facilitator at the Royal Hallamshire Hospital in Sheffield to look after Billie 24/7.

Suddenly, everything revolved around treatment, hospital visits, hospital stays, and deciding if it was safe to take Billie to certain places because her treatment suppresses her immune system.

Billie’s specific type of chemotherapy (vincristine) was so harsh that it paralysed her vocal cords and restricted her airway to the size of the inside of a ballpoint pen. As a result, she had a tracheostomy fitted, which is a device that enables her to breathe.

Fortunately, she can still eat and drink normally – she loves anything from chocolate pancakes to sticks of broccoli – but she hasn’t been able to talk since.

Suddenly, our little girl couldn’t tell us what she needed or wanted, which frustrated her and upset us. She had just begun to find her voice too – so went from babbling and trying to form words, to being completely silent.

Billie asleep on a hospital bed, with tubes going into her nose and mouth — Billie can only be left with people who are trained to use and care for her tracheostomy (Picture: Freyja Harpham)

We found an apt solution in an unexpected way: CBeebies’ Justin Fletcher – also known as Mr Tumble. He uses Makaton, which is a form of sign language.

So, with a little help from YouTube tutorials, we picked up the basics. Billie made up some of her own too, some of which are really funny. She claps her hands then sticks her fingers up in the air for pizza – which isn’t correct at all, but it works so we all do it now!

Zac and I are even planning on going on a Makaton course to expand our knowledge further as it’s such a good skill to have.

But sadly, there’s very little respite for us, as Billie can only be left with people who are trained to use and care for her tracheostomy. This is only Zac, my dad and I.

Billie’s older sister, Ada – who was four years old at the time of Billie’s diagnosis – has seen her routine change too. She’s too young to fully understand what’s happening, which has been hard for her.

Billie in flower sunglasses, a yellow sun hat and yellow dress, in the garden and smiling — Every day, 27 people in the UK are diagnosed with the disease (Picture: Freyja Harpham)

Billie aged three, wearing a pink sweater, short hair and a tube coming out of her throat, standing in her living room and doing a peace sign — Like countless families, we had no idea what its warning signs were (Picture: Freyja Harpham)

Throughout it all, my childhood best friend, Hannah, has been the glue that has held a lot of this together – organising days out, sleepovers and school runs.

As if that wasn’t enough, she took on this year’s London Marathon to support Leukaemia UK, a research and advocacy charity dedicated to finding better, kinder treatments for people diagnosed with the disease. She raised an incredible £4,000 – double her original fundraising target.

Every day, 27 people in the UK are diagnosed with the disease. Although it’s still relatively rare, leukaemia is the most common type of childhood cancer, making up around a third of all cancers in children under the age of 15.

Yet, like countless families, we had no idea what its warning signs were.

Looking back, all the red flags were there for Billie. She was showing classic symptoms of leukaemia, including fatigue, fever, and repeated infections.

That’s why I am sharing my family’s story now. If we’d known then what we know now we would have pushed harder to get a full blood test, which would have sped up Billie’s diagnosis.

Freyja with her husband and two kids, at a wedding, dressed up and smiling — We’re still in an intense period of grief (Picture: Freyja Harpham)

It may not have made any difference for Billie – but it could well do so for other people – both children and adults. Early diagnosis really does save lives.

Of course, we hold on to genuine hope that Billie will make a full recovery, as the survival rate for those under 15 with ALL is a very encouraging 90%.

Going through all of this has made it obvious that we need to look at the bigger picture of how we could make a difference to the people facing a diagnosis today, or in the future.

Billie’s tracheostomy could have been avoided if the treatments weren’t so harsh. She had a type of chemotherapy that is usually for adults. If there were more options for children’s chemotherapy, then we wouldn’t have ever gone through this difficult situation.

Find out more

For more information, visit: http://www.leukaemiauk.org.uk/

By funding cutting-edge research, Leukaemia UK is striving to ensure there’s more effective options for treatment which mean people like our beautiful Billie can enjoy a better quality of life.

We’re still in an intense period of grief. We’re grieving the loss of the life that Billie would have had without this. We know that getting cancer will change her life forever and that’s something that is still difficult to get our heads around.

All we can do is appreciate the good times – especially when Billie is well enough to do something we may otherwise take for granted.

We sincerely hope that Billie can have her tracheostomy removed when her treatment ends next year. Hopefully, with some speech and language therapy, she will find her voice again – especially before starting school next September.

We want her to be able to live a life like her future classmates. We want her to be happy and healthy.