Children don’t know when something is wrong with their bodies or won’t know how to explain how they feel. And that, unfortunately, makes diagnosing childhood cancer a challenge.
“The numbers are rising; the incidence of leukaemia is increasing,” says Sarah Curtis. Her son, Robbie, is four years old and was diagnosed with acute lymphoblastic leukaemia in March 2018. He’s currently receiving treatment at the Red Cross Children’s Hospital in Cape Town.
“You need to be aware of your child. If I look back at photos from six weeks before his diagnosis he had dark circles under his eyes.”
“He was more tired. He didn’t want to go to school and he loves school,” adds Donald. “He was always an energetic and intelligent child.”
“Often they have a day or two of fever and that’s often how it starts. You go to the doctor and they just say they’ve got the flu or an ear infection,” says Sarah. You’ll get medication to treat the fever. But the scary thing is that leukaemia is easily detectable with a blood test.
“But you also can’t freak out every time your child is sick and request a blood test. I believe it should be a normal check-up to do a blood test every year,” says Sarah. “Invest R200 and have a blood count done. And take your child to a paediatrician, not a GP.”
Unfortunately the Curtis family didn’t have access to a paediatrician in Knysna until the end of 2017. They both believe that a paediatrician is better equipped to deal with childhood illnesses, like leukaemia, than a general practitioner – their advice to parents is to take your child to a paediatrician.
Rocking for Robbie
The Rocking for Robbie page started as a way for Sarah and Donald to keep up with everyone. “You don’t feel like talking about it all the time. Or telling the same story over and over. Knysna is a small town so when you go into the shops you will run into someone you know. And they want to hear the story. I used to have huge anxiety,” says Sarah. “And after a while you become the parents with the child with cancer. And with some you even have the feeling that they think it’s contagious.”
The family has received a lot of support and are organising a golf day on 30 September at Pezula Golf course. September is also Childhood Cancer Awareness Month.
“It’s incredible,” says Donald. “We’re hoping to turn the golf day into an annual event next year to support all the various charities. We are fortunate that we have the financial support, but not every family does.”
This year 20% of the proceeds that they raise will go to the Sunflower Fund and the Red Cross Hospital. And in doing so they want to try and help raise awareness around childhood cancer. “Not every cancer out there is pink. People are shocked to see a child with cancer,” says Sarah.
“You try to find the positives where you can,” says Sarah. “Your life is shaken apart. You have insight into something you have never thought of. People want to help so you need to provide an easy way for them to help.”
What you can do
Donald and Sarah say the daily messages they receive from friends and family really help. “Those little messages where people tell you they’re thinking of you, hoping everything is okay. Those mean so much to us. People either stare or they pretend you don’t exist,” says Sarah.
How do you deal with it? “People say I don’t know what to say,” says Donald. “But all I can say is there isn’t anything to say. Just check in with us, tell us you’re thinking about Robbie. That goes a long way.”
The Sunflower Fund: Be someone’s match
“We’d never heard of the Sunflower Fund before,” says Donald. “A bone marrow transplant is a treatment of last resort. It’s literally when everything else has failed they’ll try the bone marrow transplant. So many children don’t get that opportunity because it’s so difficult to get a match.”
“We don’t need a bone marrow donation yet – hopefully we won’t. But we want to raise awareness and funds to help the children who do,” says Sarah.
Unfortunately the chance of finding a matching donor is one in 100 000. The Sunflower Fund says that because “ethnic origin plays a significant role in the search for a donor, South Africa’s rainbow nation is at a distinct disadvantage, requiring a large pool of prospective donors.”
They have partnered with the Centre for Proteomic and Genomic Research (CPGR) to test potential blood stem cell donors using the most advanced technology in HLA testing known as Next Generation Sequencing (NGS).
This new level of testing will be performed using the AllType™ NGS Assay. “We implemented the AllType™ NGS Assay, an 11-Loci high resolution solution to ensure we test at the highest level possible to improve search and match optimisation,” said Alana James CEO of The Sunflower Fund. “What this means is, less confirmatory tests are needed when a match is identified and this in turn means lower cost and a reduced waiting period for the patient.”
Currently, the Sunflower Fund is the only registry globally to test at this level so it is not just a first for Africa, but a first for the world.
The Sunflower Fund has a 17-year track record of recruiting donors in South Africa. Sign up to become a donor today – call them on 0800 12 10 82 or visit www.sunflowerfund.org.za.
Image credit: Supplied