/ 10 April 2023

Confronting grief, Part 2: The hard road back to hope

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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 1 here

My beautiful, delightfully cheeky, dancing six-year-old daughter was pummelled by her cancer treatment. The steroids made her angry for no reason. Her face swelled into a little moon. Cortisone made her eat like a famished lion. She could still be hungry after 10 meals in a day. 

The chemotherapy brought nausea, mouth sores, diarrhoea, tiredness, weakness and hair loss. Mbali had beautiful thick black hair, and the hair loss always hit me hard. I always joked that I would take her hair and put it on my head which hadn’t been blessed with the same bounteous hair. Now when I made her bed there were tufts of hair scattered on the pillows. When I washed her, clumps of hair floated in the water. After a while we had to shave off her hair.

Unitas hospital became our second home. The people working at the cafeteria knew us. We knew the rotation of the nurses and had our favourites. We had our preferred rooms because they could only take one other patient, thereby giving more privacy, or because they had better sunlight, or a window that opened. I became fluent in terms like prednisone and MTX. I learnt to know when blood counts were okay and low platelets levels necessitated an infusion or Neupogen to help Mbali’s body stimulate her platelets on her own and when Hgb levels were too low requiring a blood transfusion. I learnt about lumbar punctures and bone marrow aspiration. I learnt how Mbali responded to the different types of chemo and the things to look out for when we were home. In hospital nausea could be treated with Zofran administered by IV but once we were home the nausea had to be endured in a far more debilitating way. When the high fevers came we had to rush to the hospital, sometimes at night, so that the infection could be treated with intravenous antibiotics and the fever brought down with Perfalgan. 

After a very strong, undiluted chemotherapy treatment Mbali started having seizures, something that is terrifying for a parent to witness. She had to be admitted to the intensive care unit (ICU) for about two weeks. 

I fell apart. For a few days the exhaustion and fear had accumulated to the point that I became so sick that I couldn’t even go sit with Mbali in the ICU. When she eventually left the ICU she was hallucinating, seeing things that were not there. The Mbali I loved seemed to have disappeared. I was terrified. I thought I had lost the child I had known.

From September 2016 to about July 2017 Mbali was in and out of hospital or lying at home throwing up, in pain or just missing out on the world as she had to stay at home because of the high risk of infection. She was weak but when she could manage, I took her for short visits to outdoor places to give her some semblance of normalcy, some sense of the world outside the hospital and our home. 

Before Covid made masks an ordinary thing Mbali always had to have a mask over 

her nose and mouth when she went out of the house. Her progression towards a normal life continued. At the beginning of the third term in 2017, she went back to school. It was difficult for her and she was behind on her school work but she was happy to be with her friends again. 

On 14 October 2016, Mbali’s school, the Woodhill College Foundation Phase, held a cake and candy sale to raise awareness of childhood cancer and raise some money for our medical bills. This was deeply appreciated. I am always astounded at how there are so many bills not covered by medical aid, even when a patient is in hospital. The laboratory groups sucked in our money at a rapid rate. 

Cancer patients have blood taken on most days because the doctors need to keep track of chemotherapy levels to ensure that they are at acceptable rates so as not to damage the liver and kidneys. They need to know if the white and red blood cells are at acceptable levels if not an infection might be on the way or a transfusion might be necessary. All this costs money and if you don’t have the money your child’s treatment will be compromised. 

From July 2017 Mbali was in maintenance. She still had loads of pills that she needed to take at home and weekly or bi-weekly visits to the hospital for chemo injections on her thighs and blood tests to ensure that the body was still responding as it should. But the news from the doctors was good, very good. On 28 July 2019 Mbali rang the bell in the paediatric oncology unit that signals that a child has beaten cancer. She rang it with laughing joy. The sun was rising. We basked in relief. It was a glorious day.

Life began to return to normal. I had finally found a job and we began to feel the comforting humdrum of ordinary life. But I never quite settled into the flow of it. Cancer corrodes any feeling of being fully at peace. You remain in a state of vigilance and watchfulness. But as the years passed and Mbali thrived as a normal little girl, a little girl with an uninhibited sense of delight in the simple pleasures of being alive, that vigilance became less intense. 

Then, in March 2022 Mbali, now 11, started complaining of pain in her legs and her lower back. This was how the cancer had started when she was six and terrible intruding thoughts pounded into my mind. I tried to be calm, to push them away. 

At the end of that month, after visits to our GP and Dr David Reynders, our paediatric oncologist, we got a call to come to the doctor’s rooms on the morning of 2 April. Dread stretched its hand back into our lives.

We were hoping with all the courage that we could summon that our fears would be unfounded. The doctor told us that the cancer was back. 

I had never seen my child cry like that. This was different to the first time. Mbali was older now, almost a teenager. She had found her place at school and had a group of good friends. They had plans. This time she knew what was to come as the doctors did what they must to keep her alive. She didn’t want to give up the life she had regained after such an arduous struggle.

The treatment was scheduled to start on 7 April. Mbali’s birthday was on the 9th, so we quickly organised an early celebration. She loved Asian food, especially sushi, and we went to RAYA, one of her favourite restaurants. We held each other close as we braced ourselves to begin the treatment ordeal again.

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.