You’re dealing with a child’s cancer, then life smacks you in the face
A Joburg mother of a terminally ill child speaks about the financial strain of the disease
Lee-Ann and Kesavan Govender were barely coming to terms with the news that their then three-year-old daughter had cancer when “major decisions smacked them in the face”.
“What about my son? How do we support him and how are we going to afford full-time help, special cleaning detergents, special dietary needs, additional petrol to hospital and so much more – but the scariest is, how am I going to manage a full-time job and a terminally ill child?”
These were some of the questions that the Govenders, like thousands of other parents with children suffering from cancer, had to ask themselves.
Ahead of International Childhood Cancer Day on Friday, the national health department told Times Select between 200 and 2,500 SA children and adolescents are diagnosed with the disease each year.
But the financial side of a devastating illness is rarely openly discussed because of embarrassment and fear.
“For the first year of Shanaya’s illness we were lucky that both my husband and I worked for extremely understanding organisations who allowed us to spend as much time with her and still work from home or the hospital,” Lee-Ann said.
In 2017, Shanaya was admitted to hospital for 21 consecutive days.
“I used to sleep with her in hospital and leave to work in the morning, then come back to the hospital around mid-day. We were in a stable financial situation and could afford all the added bills that came our way.”
Shanaya, who turned five in November, was diagnosed with a rare cancer, stage four Ewing sarcoma with metastasis in both lungs.
Her left arm was amputated last March.
“Unfortunately, post Shanaya’s amputation, both of us working full-time jobs and especially me, in a senior position, it was no longer working. Shanaya required full-time help with her recovery and all she wanted was mommy,” Lee-Ann said.
Lee-Ann had to leave work, even though she earned five times more than her husband.
“How do you, as a mother, allow your terminally ill four-year-old child to go through a transition of losing a limb without you? We had a plan to sell our home, vehicles, and largely downscale our lives.”
The Govenders decided that the money they had saved to take Shanaya on a dream holiday after her treatment, along with the capital from the sale of their home, would carry them through.
But Shanaya relapsed four months later.
“Suddenly she could no longer walk. Her relapse brought with it so many emotions and she no longer wanted us to sell her home. It is her place of safety.
Even with drastic downscaling, the family could not afford the simplest things.
The financial strain is compounded by the cost of the special food and drinks that Shanaya needs, fuel for hospital visits, special cleaning supplies to keep germs away, facial masks, cotton swabs, meal-replacement supplements, nappies and wet wipes, among many other things.
“We try to raise money through many avenues, childhood cancer charities help with grocery vouchers and cash donations. Through all of this you still have the reality that I have a terminally ill child whose future is not guaranteed but I need to help Shanaya fight this,” Lee-Ann said.
Cupcakes of Hope founder Sandy Cipriano believes there is a growing need for charities to financially support families with children battling cancer.
“It gives them hope that there is someone who will walk with them every step of the way and that there is someone there who will support them, even financially,” she said.
Her organisation helps young cancer patients by paying for medical treatment and day-to-day needs such as food, nappies and transport for hospital visits.
Meanwhile, Shanaya has refused to give up chemotherapy and is set start again this month.
Although unable to stand and walk, the five-year-old – who calls herself Shanaya the First, after Disney princess Sofia the First – wants to attend school, have play dates and go swimming.
“So we continue to fight this disease head on with everything we have, as a united family, as she is our one and only Shanaya the First. Ewing sarcoma may have infected her body but will never touch her heart and soul,” Lee-Ann said.