Reena’s Story
Our lives changed dramatically in December 2022, when Adelyn, then just two and a half years old, was diagnosed with leukaemia. It started with a fever that did not respond to treatment, and deep down, I sensed that something was wrong. Adelyn became severely dehydrated, her temperature would not settle, and her energy began to fade. I requested an urgent referral from her GP to the emergency department. We waited nearly 24 hours to see a paediatrician, during which time Adelyn had no intake or urine output. With no beds available, I held her until, finally, at 3 a.m., she was seen by a doctor.
We were a happy family of four with dreams of a bright future, but the news left us heartbroken. We learned that her treatment would span two years and six months. Initially, Adelyn was admitted to Crumlin Children’s Hospital for a month and later transferred to Mercy University Hospital in Cork. With no immediate family nearby, our son Abel stayed with close family friends. Though he managed well at first, the separation soon distressed him. It was his first time away from home, and seeing how much he missed us, we applied for an emergency visa to bring my parents over from India. By February, they were by our side, and Abel was finally able to come home.
During this time, Adelyn’s condition was unpredictable. While she was often at home, hospital stays every few weeks became routine, with each admission lasting three to four days. Both Charles and I stopped working to care for her, which created financial stress. For the first 11 months of treatment, Adelyn required a Hickman line and an NG tube, which she relied on so heavily that she almost forgot how to eat by mouth, leading doctors to eventually remove it. She still has her Hickman line for chemotherapy. Managing her nutrition remains challenging, and we monitor her for signs of low blood sugar levels even at night, meaning we rarely get an unbroken sleep.
Despite these challenges, our friends, church fellowship, and community have given us invaluable support. We are also deeply grateful to the incredible haematology team, including Dr. Ryan, CUH safari unit nursing staff, Crumlin haematology team and day unit for their dedicated care for Adelyn. Adelyn’s preschool, Cheeky Cherubs in Bishopstown, has shown great understanding and support as well, even though she cannot attend regularly.
His visits have become a highlight for both kids, providing them with a safe space to play and express themselves. John even had a heart-to-heart with Abel about his feelings, which has been crucial, as Abel must wear a mask in public and limit his interactions with other kids because of Adelyn’s immunocompromised condition. John’s support has been reassuring for us as parents as well; he listens and truly understands our journey.
In August, we were also given the opportunity to spend time at Daisy Lodge. It was the first time since Adelyn’s diagnosis that we felt like a family again, free from the weight of worries. The experience was deeply healing, and the complementary therapies offered us a renewed sense of relief and hope.
I work as an intensive care unit nurse at Cork University Hospital. Although I move daily between the intense demands of caring for patients and the care Adelyn requires at home, the UCC faculty, my GITU manager and colleagues have been incredibly understanding, especially given the unpredictability of our days. With Charles currently not working to focus on Adelyn’s care and Abel’s activities, life is demanding, but we are managing.
There is light at the end of the tunnel.
As a family, we are passionate about raising more awareness for leukaemia and for the organizations that support families like ours. Our gratitude runs deep, and our wish is that other families receive the same hope, kindness, and support we have been blessed with.
