Winning the fight: Dagbreek Vice-Prim opens up about his cancer

Sitting on his couch in his Dagbreek room, with very little hair on his head but a big smile on his face, Johannes Esterhuizen seems ecstatic about life.

What he experienced over the last two years is not a headline story, it’s life. An extraordinary life, mind, and body that got turned and twisted by leukaemia.

No, his story is not breaking news. The only apt description for it is ‘a miracle’.

The run-up

Johannes Esterhuizen (22) grew up in Somerset West with loving parents and an older sister. Throughout his high school career at Paul Roos Gymnasium he raked in one achievement after the other, in sport and academics. Johannes got dealt the best hand in the game of life – super intelligent, fit, handsome. And he knew it.

“Before 2015, I was completely driven towards my own personal gain. I was arrogant. All I cared about was to be admired and to be rich and successful.”

The broad smile on his face shrinks whenever he makes a reference to his “overconfident old self”.

The talented Esterhuizen decided to study Actuarial Science at Stellenbosch University and stay in Dagbreek Men’s Residence.

It was during this time when his passion for running started. It didn’t take Johannes, or ‘Jo’ as his friends like to call him, long to go from an avid hockey player to a star 800m-athlete.

“But in my first-year things started to change. I met amazing people who made me want to become a better person.”

As he spoke about his friends, family, and passions, it became clear that this 22-year-old is not just another average Joe. He has that thing that makes you want to listen to him.

“The older Dagbrekers and my athletics-mates changed my outlook on life,” he said as his face lit up. “It shifted from living a life of success, to living a life of significance.”

When Johannes started his third year in 2017, he was happy, fit and excited about sharing the gospel and becoming a mentor for others, so much so that during the June vacation he went on a solo missionary trip to townships in the Eastern Cape. He planned to apply for Dagbreek House Committee and also ran his first half-marathon.

Everything changed after that holiday.

“One day in August I was sitting in class when I felt what feels like little marbles under the skin of my neck.”

He did what any student would do. He called his mom, who told him to go to the doctor.

Suddenly, Johannes frowned.

“So, I had to get an ultrasound in my neck. It’s funny how something that is normally used to show new life in a mother’s tummy and bring happiness to a family, also revealed my cancer-ridden lymph nodes.” At the time, they still did not know what was wrong.

When he looked at the nurse doing the ultrasound, she immediately tensed up.

“The only thing she said to me was that I was going to have to go for a lot more tests. It occurred to me for the first time that it could be something really serious.”

TB from the Transkei?

“When I drove back to res that night, I remained calm. Until I had to tell my flatmates what was going on. They immediately burst into tears, and I couldn’t hold it back anymore either. We held each other and cried.”

After seeing a few doctors and a surgeon, it was narrowed down to being one of two things: Johannes either had TB in his lymph nodes or lymphoma. He immediately thought of the cramped taxis in the Eastern Cape, which made TB a real possibility.

He laughed when he said, sarcastically, that that must have been the only time when a person truly wished for the results to come back saying TB.

“My first operation was on the same day of the Dagbreek House Committee caucus. Needless to say, I was extremely calm during my speech as I was still a bit high on the anaesthesia!” said the charismatic 22-year-old.

The results from the operation came back the next day. The growths in his neck were not TB.

He didn’t cry, or scream, or stress. He went for a walk up Coetzenburg Mountain – his favourite running route – and sang.

“I told myself that everything was okay. I knew that God is always in control. I didn’t know what was coming, but I was okay with it. Whether I was going to make it or not. I was calm.”

His piercing blue eyes catch the morning sunlight coming through his res window every now and then.

At this point, Johannes’s doctors thought that he had lymphoma. Only after they extracted and tested his bone marrow did they realise the cancer was not coming from his lymph nodes. The cancer was everywhere. It was in his blood.

A few faulty cells

The doctor explained to Johannes and his parents that he had acute lymphoblastic leukemia, also called ALL.

“He explained that everyone has bone marrow, which produces new blood cells every day. In my case, my bone marrow produced a few bad cells in this daily process, which my antibodies wrongly ignored. The bad cells started to accumulate and spread.”

These faulty cells caused Johannes to be booked into an isolated, four-week, chemo-intensive treatment, immediately.

“The first thing I asked was whether I could please have a spinning bike in my room so that I could keep on working on my fitness.”

Jo also realised that he was going to have to frequently update all his friends on what was happening to him while he was alone in isolation.

“Facebook was too public, and WhatsApp groups are annoying,” he explained. He decided to write daily emails to describe how he is feeling, what treatment he is getting and whatever he felt like sharing. He sent those to all his close friends, but it quickly escalated.

“Eventually my short emailing list consisted of over 160 addresses. And then those friends forwarded my emails to their friends,” he explained smiling. “It’s just crazy. I’ve had instances where complete strangers would approach me and ask me how I am doing these days because they followed my emails.”

Whenever Jo looks up and smiles, his whole face smiles.

After a period of the intensive treatment, lumbar puncture chemo and another operation, Johannes was weak, but doing alright. Treatment could continue at home instead.

The first curveball

“At home one night, I woke up needing the bathroom. The next thing I remember is my mom standing over me with a cool cloth over my forehead. I had passed out.”

Jo had to go back to the hospital and start with brain radiation.

Every now and then he takes off his cap to rub over his clean-shaven head, which he prefers over the hair-growing-back-in-patches look.

“My diet also had to change because of my weakening immune system. No fresh or raw food, as it may contain bacteria which causes infection. Which meant no biltong or sushi!”

Johannes lost 17kg within two months.

This happened during October 2017, Jo’s birthday month.

“The last good day was the day of my 21st birthday party. It was really special, even though I didn’t feel so good. All of my biggest supporters were there.” That broad smile again.

A crippling body

Jo wasn’t himself anymore. He was weak, unmotivated and sickly all the time. He lost control of his movements due to a constant tremor.

“At first, I used a walking frame, but later on I had no choice but to be in a wheelchair. My legs would just give in when I tried to walk.” The star athlete with the long, wavy locks was gone.

In November 2017, Johannes’s condition worsened. The reality of cancer was slowly creeping in.

During a weekend away with his family, the doctor called him with the worst possible news: the cancer had spread to his nervous system, which means it could possibly spread to his brain.

“This completely broke me. I was fine with having cancer and using it to be God’s example to others. But I didn’t want brain cancer. I want to be able to think and read and engage with others.”

Jo’s condition was rare. His doctors had to consult international researchers to figure out a way to treat him.

“They put me on a different type of chemo – by the fourth day of the new program, I couldn’t distinguish between dreams and reality anymore.”

He sits staring at the floor. Hands clenched together.

“I remember I was extremely nauseous, and the doctor gave me anti-nausea medication. But then I started to get severe panic attacks as a side effect of the anti-nausea. So I started to take anti-anxiety medication. I had to go back into isolation treatment, and for the first time in my life, my positivity had run out. This was because the anti-anxiety medication’s side effect…” he paused, “was depression.”

“I told myself that I’m worthless, that God has left me, that I was going to die and go to hell. Nothing on earth could make me feel better.”

Jo’s face changed as he said that.

“That was by far the worst time of my treatment.”

The doctors started to prepare Johannes for a bone marrow transplant at the start of 2018, which was the only option left.

The worst time

The day was 15 January 2018.

Johannes was lying on the couch at home when he had something that seemed like a stroke.

After a day in the trauma unit, four days in ICU and two weeks in isolation Jo woke up. The chemo had caused inflammation on his brain which caused the stroke.

He woke up, but with the brainpower of a three-year-old.

He got sent home. Treatment had to stop, and the doctors told his parents that they don’t know if Jo would ever recover and be normal again.

From January to March 2018, Johannes was being fed, bathed and taken care of by his parents and sister. He has no recollection of that time at all.

German thunderstorms

During March 2018, Jo’s family decided to go to Still Bay as a little getaway.

“That was when I started to remember again. Walking on the beach and breathing in the fresh ocean air.”

Jo went back to the hospital in April 2018. His doctors were stunned to see him walking, talking and being himself. Jo smiles when he said that the doctors called him a medical miracle. They seriously doubted that his brain would make a full recovery as it did.

He had to get a bone marrow transplant as soon as possible. First, he needed a donor.

“Finding a bone marrow match is about 1 in 100 000. So, we immediately started looking for a donor internationally.”

Miraculously, they found a 100 percent match for Jo in Germany.

“The odds of that happening is nearly impossible!” he exclaimed. “At that point, I knew that if God had got me this far, there really is nothing He can’t do. I trusted Him completely.”

The process of transplanting bone marrow is as follows:

1. Harvest stem cells from the donor.
2. Wipe out Jo’s cancerous bone marrow completely. His body stops producing new blood.
3. Within a four-day window, the stem cells need to be couriered from Germany to South Africa and injected into Jo’s blood – otherwise, he dies.

The transplant was scheduled to happen in June 2018. Everything was in motion.

On the third day of the four-day window, Jo was supposed to receive his new stem cells. But the planes in Germany were not taking off due to heavy thunderstorms.

“All I could think was ‘Lord? Really? What else?’”

Around 10 PM that night, Jo’s dad was on his way out. When he walked past reception, a lady with a large cooler box suddenly rushed through the hospital doors to the reception desk.

“According to my dad, she said in a very heavy German accent that Mr. Esterhuizen’s stem cells have arrived.”

The transplant took place on the fourth day of the four-day window.

Johannes had one of the speediest recoveries that his doctors have ever seen. He was discharged by July and was able to watch the FIFA World Cup from the comfort of his own couch. He hiked the Tsitsikamma trail over December and he is currently completing his degree in Actuarial Science.

Sitting on an old couch in a fairly small Dagbreek-flat, Johannes seems ecstatic about life.

“What I want people to know is that I am not the incredible one. I am not responsible for my miraculous story. God had a plan for me. He is amazing, not me.”

He is also Dagbreek’s Vice-Primarius, despite not serving a complete term on the house committee. He is fulfilling his passion to mentor, by working closely with the newcomers and sharing his story with others.  

He hopes to start running again soon.