- Diagnosed with lymphoma

Esther's story

Esther Pekepo, an 18-year-old secondary school student from Auckland, was juggling her Year 12 studies with her hobbies, including dance and soccer, when mysterious lumps began to appear on her body.

“The first lump appeared on my chest, and it just kept growing until it was the size of half a golf ball. At first I thought it was a bruise but it just kept getting bigger and harder. Then other lumps started popping up over my body, on my stomach, my back and my chest. I think in all I had about ten lumps.”

Esther went to her GP, who prescribed antibiotics and sent her for blood tests which came back clear.

“My temperature was all over the place, I would be boiling hot, then freezing cold, and I was also really, really tired. As I was a bit depressed at the time I thought that perhaps my body couldn’t keep up with my mind. I was also having real trouble sleeping,” she says.

Esther kept returning to her GP over the next three months.

I remember the GP saying to me you’re too young for this, and wondering what that meant. Then it got to the point where I couldn’t sleep, could barely eat and barely walk as lumps had started appearing on my inner thighs.

She returned to the doctor’s surgery and was seen by a locum GP.

“He took one look at me and said something is really wrong here”. I was admitted to hospital straight away. They immediately started to do lots of tests and kept me in overnight.

“Heaps of doctors kept on coming in and out and looking at me. I felt like I was in an episode of House (a popular television programme),” she remembers.

“I just kept wanting to know what was happening and when I could go home. I had a big dance event coming up and wanted to go to the practice, but actually there was no way I could have done it.”

After extensive testing Esther’s haematologist explained that she had T-cell panniculitis, a form of lymphoma. She was grateful her guardians and family members were with her when she received her diagnosis.

“The doctor told me that my immune system was affected and that they would put me on medication. At that point I didn’t know how serious my condition was.

“I remember thinking thank God I’ve got lymphoma and I don’t have cancer.”

It was not until Esther returned home a few weeks later that her guardian broke the news to her that lymphoma was a form of blood cancer.

“Hearing the word cancer was just such a shock. It hit me really hard, it was like a slap. The doctors might have told me earlier about it being lymphoma but I don’t recall hearing the word cancer. I think that I could have dealt with it better if things were a bit clearer.”

Esther began a course of oral chemotherapy, had regular blood tests every day, and was in and out of hospital. She was determined to keep up with her studies.

“It was hard going. It was a while before I was able to walk again and I also had to learn how to write again, as my hands couldn’t grip anything,”

“I decided to focus on sitting one exam for English which I managed to pass,” she grins.

Esther also met Waiariki, a girl of her own age at CanTeen, who was diagnosed with lymphoma two days after her.

“It really helped me to share our symptoms and have a good laugh about everything that we were both going through. It was so strange, we had so much in common, we both liked to laugh and liked to dance and our favourite colour was purple. It was like we were one mind in two different bodies”

Gradually as her treatment progressed Esther began to feel better each day and returned to school to resume her studies, but had to keep physical activity to a minimum.

I didn’t want to tell anyone that I had cancer, I needed to understand how to cope with it before I shared it with other people.

Esther confided in close friends and family who were supportive of her.

“Actually a lot of people didn’t know I had lymphoma until they saw me in the LBC video for World Lymphoma Awareness Day. They were like, “why were you in that ad?” And I was like. “because I have lymphoma,” says Esther.

Esther is taking one day at a time and gradually regaining her strength.

“I’m back dancing again but I can’t do sport yet, as I still get quite tired. Sometimes I wonder if it’s because of my diagnosis or if I’m just unfit,” laughs Esther.

“I know I need to learn my limits, but I’m definitely pretty good at pushing them,” she says.

In recognition of her amazing spirit, Esther was recently awarded the People’s Choice Award at Onehunga High School’s senior prize giving.

“I was so surprised that people saw all the good in me. I thought the award should go to everyone!”

Esther has some insightful advice to other young people diagnosed with a blood cancer.

Don’t let it scare you. The only difference between yesterday and today is that you have lymphoma, you’re still the same person. You don’t know what’s going to happen, so take each and every day as it comes, just keep going.

“A wise friend once told me, every morning when you wake up the day is untouched, no one knows what’s going to happen, anything could happen. Touch the day with how you want it to go,” says Esther.

“I’ve taken lots of positive things out of having lymphoma. I had to hit rock bottom and be scared, and get over having cancer, to see the better things that are around me.”

“Lymphoma, yes it is a heavy burden, but ones strength and ability to remain positive through a time like this is the most overpoweringly beautiful gift you could ever acquire.”