/ 15 April 2023

Confronting grief, Part 3: Hope crests and crashes

On 8 March, Mbali Hlela Bulunga, a 12-year-old girl, passed through a portal of pain and went to her peace, after first being diagnosed with leukaemia six years earlier.

On 8 March, Mbali Hlela Bulunga, a 12-year-old girl, passed through a portal of pain and went to her peace, after first being diagnosed with leukaemia six years earlier. In this series of three articles her mother describes the journey undertaken by her family as they sought to keep hope alive. Read Part 2 here

Mbali’s first second round of treatment first seemed to have worked. And then, six years after her first diagnosis of leukaemia, we had to face what no family is ever ready to face. 

On 7 April, we began the second period of treatment at the Unitas hospital. We knew the routine. Mbali’s father has multiple sclerosis and a sudden flare-up meant that this time around he was not able to sleep with her at the hospital in the evenings. 

His mother, who has always treated me with love and respect, even during the difficult period when our marriage had crumbled, offered to sleep with Mbali at the hospital during the week so I could care for my older daughter at night. I spent the weekends with Mbali, day and night, as my sister had come up from KwaZulu-Natal to help out. 

At the beginning of June, Mbali contracted Covid while in hospital and had to be put in isolation in the intensive care unit (ICU). I was not even allowed to go into the ICU until I had presented a negative CPR test. Even after the negative test I could only wave at my daughter through a glass door. A mother has no more powerful drive than to care for her children and not being able to even be present was very difficult. Anxiety gnawed at me with increasing ferocity as I couldn’t sit beside Mbali, hold her, talk to her. After almost a week, I was eventually allowed to go into her room with full personal protective equipment .

This time the plan was for Mbali to finish chemo and then do full body radiation to kill her bone marrow so she could get a transplant from her sister’s healthy bone marrow. 

On 22 July the transplant process started. Mbali had the usual graft versus host disease symptoms. She had diarrhoea and mouth sores. Her hands and feet shed skin like a snake. Her skin changed colour. People thought she had vitiligo. The taste of food changed.

By the end of August, Mbali was home, barely able to walk, but home. It looked like she was coming through her second journey with cancer. In September, she started getting cytomegalovirus (CMV), one of the viruses that are expected after a transplant. The medical aid eventually approved the hugely expensive medication to treat it. She did well on the meds and the CMV levels went down. In August, she started her horse riding lessons again. She loved horses and horse riding. She slowly cycled on her bike. She felt free while riding and I felt that she was riding into the future. My heart sang.

In November, we learnt that Mbali was in remission, the cancer was gone. It was the happiest day of my life. Joy burst through the walls of the fear that had locked us away from ordinary life. On 29 November, Mbali rang the bell in the Unitas paediatric oncology unit again, celebrating the end of her second journey through cancer. 

December and early January were wonderful — Mbali was doing well, looking healthy and going out with her friends, going to birthday parties. Seeing her leap into a swimming pool with glee sent my spirit soaring.

But it was difficult for her to go back to school after cancer treatment. She was behind with the syllabus, friendships had morphed and she was physically weak. Carrying a heavy bag and walking up and down stairs was exhausting. She looked different and children can be cruel.

On 9 January, she had the normal check-up at the hospital and we were told everything was fine. On 16 January, the school called and asked me to fetch Mbali early because she wasn’t well. She said that she couldn’t breathe properly and her asthma pump and nebuliser weren’t helping. I took her for a check-up. The doctor who was on duty that day thought that she was having anxiety attacks and therapy was recommended. 

Mbali was very tired, hardly eating and just not herself. It was clear to me she was dealing with more than just panic and anxiety attacks. She had wasted into an almost skeletal thinness. Something had taken her strength.

On 30 January I took her back to the hospital. She was so weak that she needed a wheelchair to get to the ward. As I walked into the paediatric oncology unit, after opening her file at admissions, I could see nurses hurrying up and down the corridor. I wondered what was going on and which child was the cause of all that commotion. 

As I entered the ward, I realised that the commotion was by my baby’s bed. There were nurses all around, putting in drips, connecting her to oxygen. And then, just like that, we went back up to the ICU. She stayed there for three days.

The doctors couldn’t agree on whether Mbali was having an asthma attack or whether she had an infection. Eventually they decided that it was asthma and began intensive treatment.

We were in the ward for almost two weeks and it seemed as if we would be going home soon. While we waited out our time another child in the ward died. A family, who were holding on to the hope that a pregnancy brings while their 12-year-old daughter battled a brain tumour, lost the baby at six months. A nine-year-old boy had a foot amputated.

I was trying to be grateful for Mbali’s tenacity, her will to live. And then things suddenly got worse. She had been having a good day on 9 February. She was joking around with her cousin on her phone and decided she wanted to start a TikTok channel on makeup. I was working on my laptop, and then watched the State of the Nation address.  We laughed at the childish antics of the Economic Freedom Fighters.

As we were preparing for bed, I noticed on the machines that her breathing levels were low and called the nurses. They called the ICU nurses and the doctor as they fiddled with the oxygen flow and pressure. I climbed into bed with Mbali and sang to her until she slept. In the morning, as I was getting ready to go take a shower, I saw that the levels were very low, so low that I thought that there must be a problem with the machine. I called the nurses again thinking that they would fix the machine. Instead, they said that she had to go back to the ICU.

Mbali was being her sassy self — refusing to go to the ICU, a very lonely place for a child. She eventually relented on condition that she would come back down to the paediatric oncology ward in the evening to sleep as I couldn’t sleep with her in the ICU. When I got to the ICU, after packing her bag and getting more nappies, I saw a crowd of doctors and nurses around a bed. When I realised that they were gathered around Mbali’s bed a wave of shock ran through my body. After all, she had been fine in the ward just five minutes ago.

I was told to call my family as the doctors were “very worried”. My beautiful daughter was now lying in a bed looking like a warm corpse, with a pipe in her mouth and running down her throat. The doctors said she wasn’t breathing on her own and something was making her condition deteriorate so they had to intubate and put her on a ventilator. 

After a couple of hours, the doctors called us again and said that they wanted to put her on ECMO, a form of life support where cannulas are inserted into the body — one to take the blood out of the body, and pass it through the ECMO to oxygenate it, and another cannula to feed the blood back into the body. The doctors made it clear that ECMO is not a treatment, just an intervention to help Mbali’s lungs to rest and, hopefully, recover. They hoped that her lungs would heal and that, when they found the cause of her rapid decline, they could then treat it. 

Mbali’s will to live took her forward and the ECMO seemed to be working. Her lungs started clearing up. After three weeks, the doctors disconnected her from the ECMO and she was breathing by herself, with the help of the ventilator.

Rushing home to spend some time with Nandi, my older daughter, in our cosy home and then being back with the smells and heartaches of the hospital 30 minutes later made me feel schizophrenic. I love my children fiercely and there is nothing that I wouldn’t do for them. But I couldn’t be a fully present mother for Nandi and the guilt sits in my stomach. 

Sitting in hospital watching Mbali change, seeing all the wounds that had appeared on her body as the doctors tried to save her life, her head swollen to almost twice its size, her eyeballs bulging out was painful beyond my capacity to describe.

When you have a sick child, you learn exactly who your people are, who your tribe is. Many people will disappoint you. Some will hurt you, sometimes breezily declaring that they understand what you are going through and that it will all be okay. Others will subject you to their religious dogma, declaring that a child’s struggle with leukaemia is part of a divine plan, meant for you to learn a lesson, or that a miracle is imminent.

There are also those who will just be there, just sit with you, offer practical support, and ensure that you know in your bones that you are not alone. They will get on a flight, bring a meal, get you a coffee, drop off a bottle of wine, pick up your child from school, send petrol money, give you a hug. They will come to the house and make dinner. 

On 7 March, the doctors said that Mbali was not able to breath on her own, even with the ventilator set to the highest levels, and that her organs were beginning to fail. A biopsy had never been possible, as she was so ill, but they thought that there was scarring in the lungs caused by the asthma, chemo, radiation, Covid-19, CMV, the graft versus host disease and that her bronchioles were collapsing, unable to push the carbon dioxide out of her lungs. 

The following day we were told that we had reached the point at which kindness required the machines to be turned off. The last time I had spoken to my daughter, or heard her voice, was the day she had been brought up to the ICU almost a month before.

When your child is keeping death at bay, each hour is a victory, a precious victory. When you are told that the end has come, the bottom drops out of your world, time stands still and, as far as you can comprehend, the future looms as a long passage of interminable pain.

We were given time to say our goodbyes. I climbed into the bed and held Mbali, stroking her, quietly talking to her. Our family and my tribe took turns to say their goodbyes. There was weeping, stories and warm laughter as we shared memories. We played songs. And then it was just the immediate family as the machines were turned off and my beautiful daughter floated away from her pain.

Nontobeka Hlela works for Tricontinental: Institute for Social Research and is seconded to the office of the National Security Adviser as a researcher. She writes in her personal capacity.

The views expressed are those of the author and do not necessarily reflect the official policy or position of the Mail & Guardian.