Love in the face of adversity

TALI FEINBERG

Their story is one of courage, hope, inspiration and mind-boggling adversity, as they went through more in their short time together than some couples experience in a lifetime.

On their wedding day, the young couple looked like any other under the chuppah – glowing with health and happiness that they had finally found their be’shert. Although it appeared to be perfect, Craig had been battling cancer for many years, and it quickly intruded on their newly married life.

When they first met, Craig was in remission. But soon into the relationship, he was re-diagnosed. Craig received several cycles of chemotherapy followed by an allogeneic (donor) stem cell transplant on 4 February 2015. Three months later, he was cancer-free.

“In true Craig style, two days later he went down on one knee and asked if I would marry him,” recalls Nicci. “We got married on 25 October 2015 surrounded by family and close friends who were on this journey with us.”

With Craig’s health challenges behind them, the couple planned to start a family. “When Craig was first diagnosed with Hodgkin’s lymphoma, it was advised that if he ever wanted to have children, he would need to store his sperm, which he did,” said Nicci.

And so they began fertility treatment. After two rounds of treatment, their dream came true.

A few weeks later, Craig’s health started to change. His skin became blotchy in places, his legs and muscles started to cramp and things just didn’t seem right. “His oncologist said Craig was experiencing Graft-versus-Host Disease (GvHD). This is common after a stem cell transplant as it means that the transplant is successful and that the donor cells are becoming more prominent than the host cells,” explains Nicci.

“In no way does it mean that the host has rejected the donor’s cells. In fact, they want you to have GvHD as it’s a sign the transplant was a success and it reduces the risk of the cancer returning.”

GvHD is unpredictable and it can affect patients in many different ways. For Craig, it made his skin tighten around his body and he had excruciating pain in his legs. Craig was admitted into hospital several times and was put on morphine drips to alleviate his pain.

Seventeen days before their baby was due to be born, Craig went into multiple organ failure as the tightening skin around his torso started to put pressure on his vital organs. He was put on every possible means of life support and was put in an induced coma.

As the days drew closer to their due date, it became clear that Craig was not going to be present. Thankfully, Nicci’s sister Martine was allowed to support her. Their special friend Adam recorded the birth, which was what Craig had planned to do.

The doctors had told Nicci that there was a possibility that they would be able to wake Craig for the birth, and the day before, they started to reduce his sedation medication. During the birth, Martine video-called Craig’s brother, who was with him. “My sister turned the phone to me and I saw Craig with his eyes open. Throughout the whole procedure all I could do was focus on Craig,” she remembers.

“From the moment our daughter, Gemma, was born, I knew she was going to be my strength and I would protect her in every possible way. Gemma was brought into the world under the most stressful and unnatural circumstances, but she will only know peace, serenity and love.”

The family could still not be reunited as Craig had picked up a bacterial infection, which could be passed on to Nicci and ultimately, on to their daughter. “The first week was the hardest of my life. First-time mom, no husband at home, feeling very emotional, vulnerable and still in disbelief about everything that had happened. Despite all the turmoil, when I was with Gemma, I was as calm and engaged as any ‘normal’ mom. My child was not going to feel the worry I was under.”

Craig met his daughter for the first time three weeks after she was born. “It was a day we were praying for: We were a family. Following this, and depending on Craig’s strength on the day, I would take Gemma to the hospital so we could spend time together. Craig would be wheeled out of ICU with his drips, oxygen and other peripherals, and we would sit outside in the fresh air.”

After spending 68 days in the Donald Gordon Hospital, Craig was discharged and moved to Auckland Park Rehabilitation Hospital, where he spent eight weeks in an intense rehabilitation programme. Craig wasn’t able to walk – he had lost all muscle mass in his body, and his skin was still so tight around his joints, it made it almost impossible to move. He came home in a wheelchair, but he was home for good.

A carer would look after Craig during the day and Nicci would take over in the evenings. Ironically, Craig hardly slept during the night due to discomfort, while Gemma was a brilliant sleeper.

In June, Nicci returned to work full time and Craig went back to work twice a week. But as the weeks went on, Craig’s health started to deteriorate. The couple discovered that Craig’s lungs were functioning at 24% – the tightening of the skin that he had from the GvHD was starting to happen to his lungs.

“It was recommended that we see a doctor in Pretoria, who said he had never seen such a severe case in his entire medical career.”

Craig now needed to be on a CPAP machine at night to help him breathe. He had an oxygen tank at home and a portable oxygen machine when he went out.

On the night of 3 August 2017, Craig was struggling to breathe, and their worst fears were about to unfold when Craig was re-admitted to hospital.

“No one should ever experience or witness what we went through that week Craig was in hospital,” says Nicci. “Six days later, Craig’s suffering was no more and he was finally at peace. Craig was surrounded by everyone who loved him and who he loved. When I saw that dreaded flat line, I dropped my head and said: ‘That was a good fight, my boy. Well done. We are all so proud of you.’”

Nicci continues: “Since Craig’s passing, I find myself being an outsider in society. There are those who avoid eye contact with me in the shops. Others stop and say: ‘It’s so sad’, or ‘You poor girl’ and my absolute favourite, ‘You knew he was sick’. These people clearly didn’t know Craig and although he was sick physically, the light he brought into our family overshadowed his illness. As the poem by Alfred Lord Tennyson goes, ‘It’s better to have loved and lost, than never to have loved at all.’

Most of all, it is Nicci’s inner strength and positivity that has defined her journey. “I truly believe Craig keeps me going every day. I saw him in excruciating pain and discomfort and despite that, he lived each day as if there was no tomorrow. If Craig could do this, then so can I.