Helping Mbali to Health

Mbali is my 12-year-old niece, the daughter of my sister Nontobeko Hlela, and one of the most thoughtful, kind and loving kids I know. In 2016, she was diagnosed with pre-B-cell ALL (leukemia) when she was 6. Genetic sequencing revealed that she has a rare and high-risk mutation called Philadelphia chromosome-like ALL (identified by doctors at Penn and CHOP). This mutation affects only 12% of pediatric ALL patients. Luckily, Mbali received additional treatment with tyrosine kinase inhibitors, which has been shown to improve the prognosis of children with Philadelphia chromosome-like ALL.

Mbali had been in maintenance and then remission since July 2017. With each passing year, we hoped she would be one of the lucky ones whose cancer did not return. Earlier this year in April, at what was supposed to be her last yearly oncology visit, we were told that the cancer was back, more aggressive than before.

This time, Mbali will need stronger chemo, total body irradiation, and a bone marrow transplant from her sister Nandi. Unfortunately, during her first three rounds of chemo since April, she has already had two stays in the intensive care unit and a COVID infection. The total body irradiation will kill the infected bone marrow and radiate her entire body, including her ovaries. She will see a fertility specialist to discuss her options and explore the possibility of harvesting and freezing some of her eggs to give her a choice later. It's unlikely that private medical aid will pay for this, which would be an additional burden on the $25,000 estimated treatment costs associated with the bone marrow transplant.