Life Courageous journey
When their daughter was diagnosed with a malignant brain tumour at the age of nine, the Lekala family leant on each other for support Our daughter’s
Words and photos by Vanessa pappas
us stay positive too,” says Lebo, who is four months pregnant with her second child. “Since Keitu’s diagnosis, we have all had to make adjustments to our lives as her treatment has impacted on the family as a whole. Keitu is a very active child who loves playing, going out to movies and shopping, but because of her weakened immune system she’s not allowed to be in public places like shopping malls and parks, or around lots of people because she might get sick, so we have had to get used to the idea of staying at home a lot and turning down invites from family and friends. We can’t attend church like we used to either, which has been a hard adjustment as we are church loving people. Keitu loved going to school and being around her friends but she had to stop when her treatment started and will only be allowed back at school when she finishes her treatment in April this year. Having missed an entire year will mean she will have to repeat Grade Four.”
How it started
In 2014 Keitu was diagnosed with a highly malignant brain tumour called a medulloblastoma. What you need to know is that this is rare: medulloblastomas affect just under two people per million per year. However, children are ten times more likely to develop the tumour than adults, and children between the ages of three and eight are most affected.
Lebo says that Keitu first started complaining of headaches in April last year. “She was playing on a jumping castle in a restaurant with other kids and told me that her head was sore. I never thought anything of it and assumed she was just tired of jumping so much. Over the next few days, Keitu complained more and more about having headaches, describing them as sharp pains on the sides of her head that would strike when she was active. At first the headaches were not severe but as time went on they got progressively worse. When we fetched her from school her teacher would tell us that she didn’t have a good day and was complaining of headaches. One night, Keitu was playing with her dad. He lifted her up and swung her upside down and she started screaming hysterically and holding her head with both hands. We took her to see our family doctor four times in the hopes of finding out what was causing the headaches. On our last visit the doctor ran a series of blood tests but she couldn’t pick up anything wrong.”
The doctor recommended Lebo and Thabang take Keitu to see a paediatrician to check what was causing this, which they did immediately. He examined her and sent her to the X-ray department for a CAT scan. “Even then, I still didn’t think it would be something serious,” says Lebo. “When I heard the diagnosis, I went ice cold. Then the magnitude of just how serious Keitu’s condition was hit me like a ton of bricks and I was terrified of what the future held for my child. As a mother, all you ever want for your child is happiness and health, and now that hung in the balance.”
what the doctors said
The scan revealed a large mass the size of a small egg on Keitu’s brain. Further tests confirmed she had a malignant tumour at least four centimetres in diameter growing on her cerebellum, which is the part of the brain that controls balance and other complex motor functions. She would need to have the tumour removed completely, or as much of it as possible, or she faced the risk of it spreading to other parts of the central nervous system (brain and spinal cord), or to other parts of the body, such as the bones. While waiting for medical authorisation for the surgery, doctors inserted a ventriculoperitoneal shunt into Keitu’s skull to relieve the buildup of fluid, which can cause increased pressure in the brain. Surgeons created a small hole on the side of Keitu’s head that allows fluid to flow around the blockage and into the spinal column. They then set a date for the operation.
“We were warned about the potential risks involved with doing the surgery,” says Lebo. “As the tumour was in a very delicate part of the brain, there was a very real possibility that she could have neurological side effects. It was a very scary decision to make but we were told removing the tumour was our child’s best chance at surviving. Being an inquisitive child, Keitu wanted to know exactly what the tumour was and what was going to happen. I explained to her that the tumour was the size of a sweet and told her we must trust that all will go well. It was an incredibly stressful time for everyone. During the surgery, the doctors were able to remove most of the tumour. It took about eight hours and was declared a complete success by the neurosurgeon,” says Lebo. “Fortunately Keitu had no serious side effects after the surgery, but she had to see a physiotherapist to stabilise her movements. We were told the next step was radiation and chemotherapy to kill any cancer cells that were left, and that the medications cannot distinguish healthy cells from cancer cells. As a result, we would need to prepare ourselves for side effects during treatment.”
the road from Here
Keitu had two months of radiation therapy five days a week and has just started chemotherapy. She attends chemo three times a week and will need chemo for a total of six months to complete her treatment. “The last year has been the most difficult time of all of our lives but by supporting each other and having faith we’ve managed to get through it together. My prayer for other parents whose children are diagnosed with cancer is that you find the strength to lean on the kindness of loved ones and strangers who offer their help and support, and that you embrace the unimaginable power of hope, faith and love, knowing that you and your child can and will beat cancer.” YB