Alyssa’s Story

When I was 12, I started feeling really tired. I’d fall asleep during break and lunchtime at school, which wasn’t like me at all. At first, my GP thought it was glandular fever, so I was given antibiotics — but nothing improved. Eventually, I had blood tests, and in May 2021 they told me I had pneumonia. I was admitted to Leicester Royal Infirmary and put in intensive care for a week. That’s when my parents were told I had Acute Lymphoblastic T-cell Leukaemia — a rare and aggressive blood cancer. I received my first round of chemotherapy while still recovering from pneumonia.

Once I was stable, I moved to the Teenage Cancer Ward in Leicester for standard treatment. But after a bone marrow aspiration, doctors told me the treatment wasn’t working. I had to start more intensive chemotherapy to prepare for a bone marrow transplant. My brother wasn’t a match, but eventually a donor was found in America. Just as we were preparing for the transplant, I caught shingles and my health levels weren’t right, so everything had to be delayed.

In November 2021, I was admitted to Sheffield Children’s Hospital — one of the few hospitals in the UK that does bone marrow transplants for children. I stayed there for five and a half weeks. “The radiotherapy made me feel really ill. It was lonely going through all of this just out of COVID.”

I went home in December 2021, but in January 2022 we found out the transplant hadn’t worked. That’s when my family and I were told there were no other treatment options, and I went home for palliative care. “I understood what was happening but didn’t want to believe it was happening.” I celebrated my 13th birthday as a family of four, knowing what was going to happen. My parents didn’t stop looking for options — they searched for clinical trials in the UK and abroad.

Then everything changed in February 2022, we heard about a clinical trial at Great Ormond Street Hospital (GOSH) called the TVT Trial. I became the first child recruited, out of an original ten, and they are still recruiting children for the trial now.

The trial was intense but shorter than standard treatment. I had chemotherapy and radiotherapy sessions to prepare my body, then tiny engineered T-cells were infused. First, these cells duplicated and killed the C107 cancer cells, then chemotherapy removed the remaining bad cells. The new cells were engineered to attack only the marker cells, so they didn’t destroy all my healthy cells.

Because my bone marrow was wiped out, I had no immune system, felt constantly tired, and my mobility decreased. I wasn’t immunised against anything, so even small illnesses were dangerous. “The side effects were intense but for a shorter period of time.”

I stayed at GOSH for four months, starting in May 2022. I went to hospital school three or four times a week, joined book clubs and Zoom sessions, and did physiotherapy twice a week. By the end of July 2022, I was finally able to go home. But in late August, my body started attacking itself, and I had to go back to intensive care for a week.

In September, I went home again and I am now living a normal life. I went back to school in Year 10 and began preparing for my GCSEs. “I’m back being a normal teenager. I live my life, I argue with my brother. I’m grateful I’m here and able to do things I never thought I would be able to do.”

Now, at 16, my treatment consists of blood tests every three months and regular check-ups for side effects.