Pretoria mother fights to keep daughter alive after rare cancer diagnosis

In June, Candice-Lee King, 26, was faced with the hardest decision any mother should ever have to make. Her 7-year-old daughter, Kiara-Lee, was diagnosed with diffuse intrinsic pontine glioma (DIPG) -  an incurable and life-threatening condition. King had to choose between ensuring her daughter's comfort in her last days or fighting to keep her child alive. She chose the latter. 

According to medical resource website, Healthline, a glioma is a cancerous brain tumour that develops in the area of the brain that controls functions such as walking, breathing, vision and eating. A diffuse intrinsic pontine glioma is especially prevalent among children and progresses rapidly. DIPG symptoms include problems with chewing and swallowing, weakness in the legs and severe headaches.

"I did not know about DIPG before Kiara was diagnosed. In fact, on initial diagnosis they just said she has a brain tumour and it shocked us," said Candice-Lee. "I had to go and Google all these big words." 

Kiara's symptoms began three months before the DIPG diagnosis and were initially attributed to other, less serious conditions. "At first it was vertigo. Then it was a mid-ear infection and then it was Bell's palsy. Eventually, when she couldn't walk and her left side went numb, that's only when we went to the emergency room and they said, 'listen, let's do an MRI and scratch out worst case scenario,' which it ended up being."

Kiara has been admitted to hospital at least six times since June. She was kept in ICU for 5 of those admissions so that her breathing could be regulated using steroids and apparatus designed to support breathing. "She kept vomiting and she kept having headaches so she'd end up dehydrating because of the swelling in her brain." 

Candice works as deputy manager at a Pretoria-based company. She has negotiated flexi-hours and takes turns with family members to care for her daughter.

The young mother found out she was pregnant shortly after Kiara's diagnosis. "Not necessarily the best timing because she can't walk, so she needs to be picked up and me being 9 months pregnant, that's also very risky and very tiresome." Candice is scheduled to deliver her son on October 30. Kiara is very excited and can't wait to bathe and dress her new brother. "The only thing I could think of the next day was if she will see him." Candice has another daughter, Mika-Lee, 5. 

There is no known cure for DIPG but there are treatments currently at the human trial phase in the US and in Germany. But Kiara has been denied entry into those treatment programmes because her condition is rapidly becoming worse.

Candice is not giving up. "Looking after your daughter and trying to get medication and fighting for your child's life becomes your only, only reason for being and you neglect everything else." 

The family has set up a Facebook page to raise funds for Kiara. The biggest expense, after medication and treatment has come from adjusting Kiara's diet and comfort items for the little girl.

A Durban family can relate Candice's plight. Ariella Cocorozis was diagnosed with DIPG shortly after her fifth birthday. Her family immediately went into fund-raising mode and opened a crowdfunding page, which,to date, has raised nearly R220 000.