After years of treating sick children, including those living with cancer, a medical doctor, Kerryn Neilson, 32, had to face what many of her patients deal with on a daily basis after she was diagnosed with a rare form of blood cancer - T-cell acute lymphoblastic leukemia (T-ALL).
T-ALL is a type of acute leukaemia that it is more aggressive and progresses quickly. It affects the lymphoid-cell-producing stem cells, and is more common in children than adults.
Neilson says, she first discovered a small, painful lump, or lymph node, at the back of her head. Initially, she thought that it was an infection. After blood tests came back normal she continued with her life until she started getting large on her neck. Today is World Cancer Day, an international day marked to raise awareness of cancer and to encourage its prevention, detection, and treatment.
Neilson, who was diagnosed with cancer in May now encourages people to take action immediately the minute they see signs of cancer. Though she has received a bone-marrow donor in the US to treat her condition, but she can't have it unless she gets into remission.
The paediatric registrar, who already had three regimens of failed chemotherapy is now putting her hope on a new cancer drug called Nelarabine, which will hopefully bring her to remission. She is crowdfunding to get the treatment in the US after SA doctors told her that they can put her on a palliative chemo regiment rather than curative. The FDA-approved drug is only available in America and Europe, and is not yet registered in SA.
The mother of two still remembers the day she found out about cancer as if it was yesterday.
It was during a family trip to Germany in May last year that she started noticing large painless lumps in her neck, which were confirmed as cancer on her return to South Africa.
The cancer was not immediately detected, and she had to see different specialists before her diagnosis. She still vividly remembers that fateful day.“I felt utter disbelief. The physician confirmed something that I had already suspected but did not want to accept. I ended up crying in his office .
After I left his office to get further tests I felt like I was walking through the hospital in a dwaal. I was sobbing the whole way and strangers kept coming up to me to give me hugs and to comfort me,” she recalled.
Her life flashed before her eyes. “I was too young to have this diagnosis. I feared that my kids would grow up without me and eventually forget me and how much I loved them. This still terrifies me the most," she said.
While Neilson, who is paediatrics registrar, at Chris Hani Baragwanath Hospital, loved her job and enjoyed working with kids, she had to temporarily halt her studies to focus on her health.
“I loved medicine. No one in my immediate family was a doctor, and since the age of five I knew that I wanted to become a doctor...that decision never changed," said the mother of two who confesses to have a soft spot for children.
“Working with children is rewarding as they're really resilient and often have great outcomes with proper care."
She recently started a campaign called Kerryn's Leukemia Fund though Backabuddy crowdfund, to raise funds for this chemotherapy drug and cancer treatment.
"There is no guarantee that this drug will get me into remission. Right now, there is nothing else that can be offered to me in order to achieve remission. If it works, I will be able to have a bone marrow transplant from a donor in the United State, which is potentially curative, but I need to get into remission first
She admits that cancer has made her afraid at times, and forced her to think about every little detail about her life.
“It is so easy to get caught up in the day-to-day grind.. My life was crazy. I would be up and start work before my family had even woken up in the morning, and almost always I returned after dark. And that was on nights when I was not on a 28-plus hour call.”
“As much as I was achieving everything I had set out to do, when the news of this illness landed I was suddenly faced with the reality that I do not have unlimited time to spend with my family and this has made me reassess my priorities,” she says. The disease and all the hardships it brought has not only strengthened her faith, but has also earned her family support.
“My relationship with God is better. My faith is stronger. People may think that I could be angry with God, but I feel like having cancer has shown me what is important in life and has given me the opportunity to rectify things before its too late. My family and friends provide so much support and are always checking on me. My children are my ultimate driving factors as I want to be around to watch them grow up,”She spent the past few months in hospital and often in isolation and unable to see her family.
"That has been an emotional battle but as a family, they have learnt to adjust to the situation. When I am home I often have no immunity and am very prone to infections. The kids have had to learn to always wear face masks around me and wash their hands before touching me.”