The world stopped spinning when we heard the words no parent ever wants to hear: our one-year-old daughter, Billie, had leukaemia. It felt surreal, like a bad dream we couldn’t wake up from. Holding Billie in my lap, tears flowed silently as the gravity of the situation crashed down on us.
Our journey began a month earlier, when we thought Billie had a simple sickness bug. She stopped eating, so we took her to the A&E, where they diagnosed her with gastroenteritis. However, her condition worsened in the following days. I knew something wasn’t right, but couldn’t pinpoint what it was. When her usually reliable 12-hour sleep patterns vanished, replaced by a constant fever and cold-like symptoms, we returned to the A&E. We were sent home again, this time with a diagnosis of a respiratory viral infection.
It wasn’t until 24 hours later, after a series of tests, including a full blood count, that the devastating truth was revealed: Billie had acute lymphoblastic leukaemia (ALL). Telling my parents was the hardest phone call I’ve ever made. The words felt foreign, echoing in my own ears as I struggled to comprehend the reality of the situation.
In the aftermath of the diagnosis, my life took a dramatic turn. I quit my job as a research facilitator to be Billie’s full-time caregiver. Our world became consumed by treatments, hospital visits, and hospital stays. Every outing, every social interaction became a calculated risk, as Billie’s weakened immune system made her vulnerable.
Billie’s chemotherapy, specifically vincristine, was harsh. It paralysed her vocal cords, constricting her airway to the size of a ballpoint pen. A tracheostomy was the only solution, allowing her to breathe. Thankfully, she could still eat and drink normally, her appetite remaining strong – from chocolate pancakes to broccoli, she loved it all. However, the silence was deafening. Our little girl, who was just starting to find her voice, was now completely mute. She couldn’t tell us what she needed or wanted, which was frustrating for both her and us.
Then, a stroke of serendipity came in the form of CBeebies’ Justin Fletcher, better known as Mr. Tumble. He used Makaton, a form of sign language. With the help of YouTube tutorials, we learned the basics. Billie even created her own signs, some hilariously offbeat. For example, she claps her hands and points her fingers up in the air to indicate pizza – a unique, but effective way to communicate. We are even planning to enroll in a Makaton course to further enhance our understanding of this valuable communication tool.
Life, however, offers little respite. Billie can only be left with those trained in caring for her tracheostomy, which restricts our options to Zac, my father, and me. Her older sister, Ada, who was only four at the time of Billie’s diagnosis, has also had to adjust to a drastically altered routine. At such a young age, it’s difficult for her to fully comprehend what’s happening, which has been challenging for her.
Throughout this ordeal, my childhood best friend, Hannah, has been our unwavering support system. She’s organized outings, sleepovers, and school runs, providing a much-needed sense of normalcy. But her support went beyond that. This year, she took on the London Marathon in support of Leukaemia UK, a charity dedicated to research and advocacy for better, kinder treatments. She raised an incredible £4,000, exceeding her original fundraising goal by double.
Every day, 27 people in the UK are diagnosed with leukaemia. While it’s still relatively rare, it’s the most common type of childhood cancer, accounting for nearly a third of all cancers in children under 15. Yet, like many families, we were unaware of the warning signs. Looking back, we see that Billie displayed classic symptoms of leukaemia – fatigue, fever, and recurrent infections.
That’s why we’re sharing our story now. Had we known then what we know now, we would have pushed harder for a full blood test, potentially speeding up Billie’s diagnosis. While it might not have changed Billie’s outcome, it could be a life-saver for others, both children and adults. Early diagnosis truly saves lives.
We hold onto the hope that Billie will make a full recovery. The survival rate for those under 15 with ALL is a promising 90%. However, this experience has brought to light the need for more effective treatments. Billie’s tracheostomy could have been avoided if the treatments weren’t so harsh. She received a type of chemotherapy typically reserved for adults. More options specifically tailored for children would mean fewer families facing the agonizing difficulties we have endured.
We are still grappling with the profound grief of losing the life Billie would have had. The reality of cancer changing her life forever is a difficult truth to process.
All we can do is cherish the good times, especially when Billie is well enough to engage in activities we might take for granted. We desperately hope that her tracheostomy will be removed when her treatment ends next year. With speech and language therapy, we hope she’ll find her voice again, especially before starting school next September. We want her to live a life like her classmates, to be happy and healthy.
Most of all, we long to hear Billie’s little voice again – tantrums and all. It’s a simple wish, but one that holds immense significance to us.
