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

Your Baby & Toddler - - Real Life -

Words and pho­tos by Vanessa pap­pas

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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

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