November 10th 2024.
It was a day that will forever be etched in our minds. The day the consultant delivered the devastating news that our one-year-old daughter, Billie, had been diagnosed with acute lymphoblastic leukaemia. My partner Zac and I were in shock, our hearts aching as we looked at our little girl lying in my lap. It felt like the world had stopped, and I could do nothing but silently cry.
As the news sunk in, our bodies went into fight or flight mode, a reaction that has stayed with us even after two long years. Looking back, it all started in November 2022, a month before Billie's diagnosis. We thought she had a stomach bug, but when she stopped eating, we took her to the emergency room. The doctors diagnosed her with gastroenteritis, and we went back home. But in the following days, Billie's condition worsened, and I could sense that something was not right. When she stopped sleeping at night, developed a fever and cold-like symptoms, we rushed back to the hospital. However, we were sent back home again, with the doctors attributing her symptoms to a respiratory viral infection. But within 24 hours, we were back at the hospital, and after a series of tests, including a full blood count, our worst fears were confirmed: Billie had acute lymphoblastic leukaemia.
Telling our parents was one of the hardest things I have ever had to do. The words felt foreign as they came out of my mouth, and I could barely believe what was happening. Suddenly, our little girl, who had just begun to find her voice and communicate with us, could no longer tell us what she needed or wanted. It was a heartbreaking realization.
In the aftermath of the diagnosis, I had to leave my job to take care of Billie full-time. Our lives revolved around her treatment, hospital visits, and stays. We had to be extra cautious about where we took her, as her weakened immune system made her susceptible to infections. Billie's chemotherapy was particularly harsh, causing her vocal cords to paralyze and her airway to become the size of a ballpoint pen. As a result, she had to have a tracheostomy fitted, which enabled her to breathe. Although she could still eat and drink, she lost her ability to speak, and it was a difficult adjustment for all of us. Our once talkative and babbling little girl was now silent.
We were at a loss, unable to communicate with Billie. However, an unexpected solution came in the form of CBeebies' Justin Fletcher, also known as Mr. Tumble. He used Makaton, a form of sign language, and with the help of YouTube tutorials, we learned the basics. Billie even made up some of her own signs, some of which were quite comical. For example, she would clap her hands and then stick her fingers in the air to signify pizza. Although it wasn't the correct sign, it worked for us, and we all did it together. My partner and I have even enrolled for a Makaton course to expand our knowledge further, as it has proven to be a valuable skill for our family.
However, Billie's tracheostomy meant that she could only be left with trained individuals who knew how to care for her. This was only my partner, my dad, and myself. Billie's older sister, Ada, who was four years old at the time of Billie's diagnosis, also had to adjust to her new routine. She was too young to fully understand what was happening, and it was tough for her.
We are grateful for the unwavering support of my childhood friend, Hannah, who has been a rock for our family. She has organized playdates, sleepovers, and even helped with school runs. As if that wasn't enough, she also took on the London Marathon to raise funds for Leukaemia UK, a charity focused on research and advocacy for better, kinder treatments for those diagnosed with the disease. She raised an incredible amount of money, double her original target, and we are so proud of her.
Leukaemia is the most common type of childhood cancer, with 27 people being diagnosed every day in the UK. Yet, like many families, we were unaware of its warning signs. Looking back, all the red flags were there for Billie, such as fatigue, fever, and repeated infections. That's why I am sharing our story now. If we had known the signs, we would have pushed for a full blood test, which could have led to an earlier diagnosis for Billie.
We are still in a period of intense grief, mourning the life that Billie would have had without leukaemia. We know that this disease will forever change her life, and it's something we are still trying to come to terms with. But we cherish the good days, especially when Billie is well enough to do things we used to take for granted.
We are hopeful that Billie will make a full recovery, as the survival rate for children under 15 with ALL is a promising 90%. Going through this experience has made us realize the need to look at the bigger picture and make a difference for those facing a diagnosis now and in the future. Billie's tracheostomy could have been avoided if there were less harsh treatment options for children. She received a type of chemotherapy usually meant for adults, and if there were more options specifically for children, we may not have gone through this difficult situation.
If you or someone you know has a story to share, please reach out to us. We believe that early diagnosis can save lives, and we hold on to the hope that Billie will have her tracheostomy removed when her treatment ends next year. With some speech and language therapy, we pray that she will find her voice again, especially before starting school next September. Our biggest wish is for Billie to live a life like her future classmates, to be happy and healthy. And more than anything, we long to hear her little voice again, tantrums and all.
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