Beating leukaemia twice

Posted on 31 August 2017

Simone Van Kraayenburg had her whole life planned out at 20, and was well into her gap year in England when she was diagnosed with myelodysplastic syndrome (MDS), usually a disease of the elderly. After her first stem cell transplant in 2010, she relapsed and then had to enter the uncharted waters of having a second unrelated stem cell transplant at Mediclinic Constantiaberg. Thanks to the kindness of two young donors, she lives to tell her incredible story.

Simone Van Kraayenburg, 28, has still not met her second stem cell donor, a woman of about 26 who lives in Germany. ‘I don’t know what I will say to her yet. I need to wait for exactly the right words to come to me before I can write that letter, or before I can meet her. Right now she feels superhuman to me,’ says Simone. Exuding a powerful mix of carefree acceptance and a forceful newfound belief in what really matters to her, Simone comes across to those who meet her as superhuman.

Facing a second diagnosis

‘Two years after my stem cell transplant in December 2010, I went to meet my best friend for coffee and before I knew what I was saying, the words just came out of my mouth. “I’ve relapsed,” I told her. “Something isn’t right”.’

Doctors confirmed Simone’s suspicions. ‘I had relapsed with acute myeloid leukaemia (AML),’ she says. ‘We did a bone marrow biopsy nearly every month for four months. On the last biopsy it was decided I needed another transplant. I had less than 50% donor cells.’

Unable to reach Simone’s first donor as he was travelling in a remote destination, she and her treating doctors at Mediclinic Constantiaberg had to consider a second unrelated stem cell transplant. Because of her own German heritage, Simone’s second stem cell donor was also found abroad.

‘The statistics on two unrelated stem cell transplants were quite morbid, but we were out of options,’ she recalls. ‘I had to go for two induction chemotherapy sessions at Little Company of Mary Hospital in Pretoria. Each session consisted of 11 bags of chemo running 24 hours a day. I was kept in isolation for six weeks.

‘By September 2012, I was preparing for my second stem cell transplant at Mediclinic Constantiaberg in Cape Town. I was in isolation for five weeks and my body was very run down.

Dr Shahroch Nahrwar was Simone’s treating clinical haematologist at Mediclinic Constantiaberg at the time. ‘The day before I went into isolation for the second transplant, I had a bone marrow biopsy and I looked up at Dr Nahrwar and said: “Be honest with me, what are my chances?” He smiled down at me and said, “Simone, you just have to fight with everything you have”.’

Not only did Simone fight her way through to recovery, but she also pushed on with her studies, completing her degree in consumer science with several distinctions. ‘My brother often says he thinks I survived because I simply didn’t admit to myself how sick I really was.’

‘It’s now five years after my second transplant and I’m doing really well,’ Simone says. ‘I made the move from Pretoria to Cape Town, and soon after the move I surprised Dr Nahrwar with a visit. He was delighted to see me and couldn’t wait to introduce his colleagues to his “miracle baby”.’

The next step

‘After going through so much – it’s like crawling through a tunnel and reaching the other side – I really want to focus on what truly matters to me.

‘The big news is that I am busy preparing to go travelling for a few months, to write, be inspired, inspire and see what the world has to offer’. Simone plans to eventually find her way to Germany to meet her donor.

‘You can’t put a price tag on what my donor did for me. If she didn’t put everything on hold to lie on a hospital bed for a few hours, I wouldn’t be here to tell this story.’

For more information on how to register as a stem cell donor, visit the Sunflower Fund.

Find out more about donating stem cells here.



Published in Patient Stories

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