Childhood Cancer Parents Association of Botswana

03rd November 2017
Tjisuta Setlhong Source:The Midweek Sun

Kebaabetswe Setlhong says being told your child has cancer or, worse, that they could die from the disease is every parent’s worst nightmare. And he should know better. His last-born son, Tjisuta Setlhong, now four years old was diagnosed with Wilms tumor, a very rare form of kidney cancer in 2014. The kidney tumor mostly affects children under five years of age. Symptoms of Wilms tumor include; swelling in the abdomen, bloody urine, constipation, enlargement of one side of the body, and lack of appetite amongst others.

“I was shocked because he was never really sick as a child and there was no family history of cancer from either his mother or me. I thought my son has just been handed a death sentence,” he said. And for most children in sub Saharan region this is true. The World Health Organisation (WHO) estimate more than 11,000 new cases of childhood cancer occur in Botswana, Uganda and Malawi each year. Limited access to scarce health care resources mean a cancer diagnosis is a virtual death sentence, with mortality rates as high as 90 percent.

Following the diagnosis, Setlhong and his son had to be admitted at Princess Marina Hospital where little Tjisuta endured months of in-patient chemotherapy followed by weekly treatments and a strict regimen of medication at home. “It was not an easy journey. Seeing my son beaten down by the disease like that, he could not walk, talk, even his eyesight was very poor. “The emotional toll that it takes from going from a diagnosis that is possibly lethal to your child and then also having all the financial burdens that pile up on top of you, is a lot,” the father of five who resides in Lerala said. The experience, he explains, opened him up to the struggles parents of children with cancer go through. “I literally had to drop everything in order to make the weekly trips to Gaborone.

The financial strain of it alone, besides the emotional roller coaster, is devastating”. A lot of children end up dying because parents especially in the rural areas cannot keep up with the travelling expenses, special diet and overall care and they just give up, the concerned father said. It is for this reason that he decided to found the Childhood Cancer Parents Association of Botswana (CCPAB). He explained that the association’s mission is to give a voice to families of children with cancer as well as to collaborate with relevant stakeholders to give them necessary support. The association also strives to raise awareness and educate families while providing them with early tools and emotional support to cope.

“When going through this, it’s really important to know that you are not alone and having peer support may help explain treatment options, provide deeper understanding of a diagnosis and point to new research relevant to your situation.” He believes that if we can all share our experiences and the little we know about cancer, maybe, just maybe, it could help save the precious children who die from cancer every day. Registered in 2016, the organisation boasts of more than 181 members.

While Setlhong’s son has ended his treatment and is in remission, he has to undergo yearly checkup because his cancer could relapse. Although cancer can seem insurmountable, especially for families whose children are newly diagnosed, Setlhong says they eventually adjust. “True, cancer can turn a family’s life upside down, but it can change their perspective on life in positive ways too. Within a short time that we have been in existence, a lot of people tell us that this has brought their families together,” he said.

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