Lyra – “It was transplant or die”
In the latest episode of Cure Leukaemia’s Let’s Talk Blood Cancer: The Patients Podcast, host Adam Joyce sits down with, Lyra and her mum, Hayley, as they share Lyra’s journey of T-Cell Acute Lymphoblastic Leukaemia that began when Lyra was just 16 years old.
The First Signs
Having recently started her A-Levels, Lyra was an active teenager who loved running and spending time with friends. Cancer was the last thing on her mind. But what started as a small lump soon became the beginning of a life-changing diagnosis.
When experiencing early symptoms, Lyra did not feel unwell, “I felt physically fine”.
The first sign something was wrong was a lump in her groin. After seeking medical advice, she was initially told it was likely a hernia. Not long afterwards, Lyra attended a running club with friends. One of the parents there happened to be a doctor and offered to take a look.
“She didn’t say much, she just told me to go back to the hospital.” Looking back, both Lyra and Hayley now realise the doctor suspected something more serious.
Over the following weeks, more lumps began to appear. Lyra discovered one in her neck while at work and another while out walking in the park.
Searching for Answers
When Lyra returned to hospital, blood tests were carried out. Hayley called to follow up on the results but was told a doctor would contact them if there were any concerns.
“At that point, we weren’t worried”
When the results came back, the family were told Lyra’s blood levels were unusually high. One doctor suggested it could be linked to eating too many sweets or drinking too many fizzy drinks. For Hayley, the explanation did not make sense.
“She was such an active young girl. It just didn’t add up.”
The family were later referred back to the hospital, where events quickly took a more serious turn.
A doctor examined Lyra and immediately identified several enlarged lymph nodes. “I don’t know how anyone thought this was a hernia. You are not leaving here without a biopsy.”
It was the first moment the possibility of cancer became impossible to ignore.
“I remember asking someone, ‘Can this be anything but cancer?’” Hayley recalls.
“His immediate response was, ‘No.’”
Receiving the Diagnosis
A short time later, Lyra and Hayley were called back to hospital to receive the results. The family had prepared themselves for one possibility.
Hayley remembers “The doctor said, ‘It’s not lymphoma,’” Then came the words neither of them expected.
“‘It’s leukaemia.’”
For Lyra, the diagnosis meant very little at first, “Leukaemia didn’t even register as a type of cancer”.
Her first question, “am I going to lose my hair?”
For Hayley, her first thought, “am I going to lose my baby?”
Before treatment began, Lyra asked for one final day of normality. “She wanted one last night at home before losing her hair and becoming unwell”.
The Embarrassment of Cancer
While treatment brought physical challenges, Lyra says some of the emotional struggles were just as difficult. Losing her hair was particularly hard.“I didn’t want anyone to come and see me, so I stayed in the house.”
Like all 16 years old’s appearance felt incredibly important. She had recently started her first relationship and worried about how different she would look. “I didn’t want people to pity me. I didn’t want people saying, ‘Poor Lyra.’”
Looking back now, she views things differently. “I know now it didn’t matter, but if I was that age again and it happened tomorrow, I’d probably react exactly the same way.”
When Treatment Didn’t Go to Plan
As chemotherapy began, the realities of treatment quickly became clear. Hayley often helped Lyra shower and witnessed the emotional impact of losing her hair. “She would be losing clumps of hair in the shower, I’d try to hide it so it didn’t upset her.”
Desperate to preserve her daughter’s hair, Lyra repeatedly asked about cold cap therapy. “I kept asking the nurses for a cold cap, but they told me it doesn’t work for leukaemia, so eventually I had to accept it.”
The family were originally told that after six weeks of intensive chemotherapy, Lyra would hopefully be able to return to school. Instead, they received devastating news.
Doctors discovered the treatment had not achieved the response they had hoped for. “The chemo hasn’t done anything, It’s only stopped it spreading.”
More Difficult Conversations
One day after treatment, Lyra and Hayley were called into a room with both a doctor and a nurse waiting.
“Lyra was oblivious, But I knew it would be bad news when there was a doctor and a nurse in the room.” The family were told Lyra would need to move onto a more intensive treatment plan, known as Regiment C, and would require a transplant.
Afterwards, they returned to the ward with their transplant nurse, Helen. When Lyra briefly left the room, Hayley asked the question she had been carrying for months.
“Am I going to lose my baby?” Helen’s response, “I don’t know.”
A Cord Blood Transplant
Rather than a traditional stem cell transplant, Lyra ultimately underwent a cord blood transplant using cells collected from a baby’s umbilical cord.
For Lyra “m y options were transplant or die.”
Doctors explained that these cells are incredibly powerful because they are effectively brand new. To prepare for the transplant, Lyra underwent further rounds of chemotherapy alongside Total Body Irradiation (TBI).
Following the transplant, Lyra spent eight weeks as an inpatient in hospital. She then entered a six-month period of semi-isolation.
“I could go for walks and see family, but I couldn’t go back into school.”
Looking Forward
Today, Lyra’s story is one of resilience and determination.
What began as a lump that was initially dismissed as a hernia became a diagnosis of T-cell acute lymphoblastic leukaemia, months of intensive treatment and a life-saving cord blood transplant. Throughout it all, Lyra faced challenges that no teenager should have to face, from losing her hair and missing school to confronting difficult decisions about her future.