Rachel says: ‘As a twelve-year-old I loved sports, but suddenly I was tired and looked pale. On June 19, 2008, my mother took me for a blood test. When I was home alone, a man came to the door. He introduced himself as Dr. Macgillyray. He sat down in the kitchen and together we called my parents: “I think she has leukemia.” I didn’t know that word. Within an hour I was in the Royal Hospital for Sick Children in Edinburgh, my second home for the time ahead.

Royal Hospital for Sick Children

The first month went by quickly. I stayed in the hospital, received a port-a-cath and my first chemotherapy. The entire treatment lasted two and a half years. In the beginning I felt quite okay. Many visitors came with gifts, and I could eat whatever I wanted. My hair fell out, but that didn’t bother me.

That changed later. I started to feel worse: tired, nauseous, infections, no appetite and eventually a feeding tube. If my temperature went above 37.2°C, I had to stay in the hospital for at least 48 hours.

Endless side effects

In addition to nausea and vomiting, I had other side effects. The muscle in my left foot weakened, so I wore a splint. Painful mouth sores sometimes made eating impossible, and infections kept me isolated in my room.

After vincristine and intrathecal methotrexate I developed stroke-like symptoms. In a panic I was taken to the emergency room. I couldn’t speak normally. I wanted to say things, but no words came out of my mouth. This lasted for a few weeks. To this day I still struggle with the fine motor skills in my hand.

Learning about cancer cells

I wanted to keep working toward my goals no matter what. When my hair began to grow back and I could once again do the same things as my friends, I felt better. At school I loved art and biology. I was still young and didn’t yet know what I wanted to do after school, but these subjects definitely sparked my interest. I learned more and more about cancer cells. Eventually I applied to university to study molecular biology, and later I moved to Aberdeen to study immunology. It was one of the best experiences of my life.

PhD in leukemia

When I finished my master’s degree, I wanted to pursue a PhD in leukemia, preferably in childhood cancer. A position opened in Newcastle and I was accepted. It felt fantastic. After one year I moved to the Netherlands to continue my project at the Princess Máxima Center. I found it very exciting. I had no idea what life would look like there.’

‘A new life’

When I moved to the Netherlands I was 23. Luckily, I already knew a few people from the research group, which made the transition easier. The first few times I walked into the Máxima Center I felt overwhelmed. Many memories came back. At the same time, it was very comforting to see children having fun. I think the way the Máxima Center is designed especially for them is very special.

Working at the Máxima Center

I work as a product specialist in the cleanrooms to produce specialized cell and gene therapies for children with cancer. So much has changed and improved, both in care and research. It feels good to know that my work can truly make a difference. In the future I hope to further expand my knowledge of cell and gene therapy.

Looking back

Although it didn’t feel that way at the time, sometimes it seems as if everything happened for a reason. That may sound controversial, because not all children are fortunate enough to survive. But sometimes I look back and realize how everything eventually fell into place, even though it didn’t feel that way then. Experiences like this can change your perspective on life, although I don’t live every day as if I have to embrace it. Life has good days and bad days, but I am grateful for the life I have and for where I am now. I can never thank my family, the nurses and the doctors enough for everything they have done for me.’

Sinusoidal obstruction syndrome (veno-occlusive disease)

Possible late effects

Veno-occlusive disease (VOD)