It is very easy to underestimate the journey taken by a parent to get the correct diagnosis for their sick child. Nompilo Jalubane is proof of the many struggles faced by parents as her 5 year old daughter Mbalenhle was diagnosed with cancer.
“I did not know a child could have cancer. When her left eye got swollen in June 2016, I took her to the clinic every month, but they always gave her Panado until I argued with the nurses that this Panado was not working. But they told me they knew what they were doing. In October I was referred to Inkosi Albert Luthuli Central Hospital where it was found that she had eye cancer, and her eye was so badly damaged it had to be removed. At the time she was also told that the brain was affected and Mbalenhle had to go into ICU because she was also having difficulties breathing”.
After Mbalenhle’s eye was removed Nompilo also had the burden of explaining to her child why she looked different from other children. Nompilo realised the stigma Mbalenhle will face with one eye, so she decided she will normalize Mbalenhle’s condition to grow up being comfortable with herself. This is an important phase of treatment that parents have to go through with their children. The reintegration of a child into the schooling system with an eye, or any part of their body for that matter, removed. This is especially sad and unbearable for a parent.
When Nompilo arrived at CHOC she confided she was the only person working in her household and with Mbalenhle being sick, she had to make a decision to quit her job in order to be able to be with her daughter every step of the way. CHOC assisted Nompilo and Mbalenhle with free accommodation and food. Because CHOC is on the hospital grounds, transport and travelling costs for Nompilo was reduced significantly. Many parents going through a similar journey stayed with Nompilo at the CHOC Lodge and they were able to support Nompilo through this journey with guidance and assistance from the CHOC social worker.
CHOC continues to raise awareness of childhood cancers, hence the launch of Vuka Khuluma. The Vuka Khuluma Campaign launched in 2017 to increase the knowledge on the early warning signs of a child with cancer in communities and health structures.The main purpose is to ensure children with cancer and life threatening blood disorders are diagnosed early to improve survival.
In 2018, Mbalenhle continues with outpatient treatment and is hopeful of Nompilo’s recovery. Nompilo admits this has been the toughest journey she has had to face thus far, but she is very thankful they eventually got to a treatment center.