Nothing can compare to the sacrifices that parents will make for their children. For Donald and Sarah Curtis that includes regularly travelling nearly 500km from Knysna to the Red Cross Children’s Hospital in Cape Town so that their four-year-old son, Robbie, can receive lifesaving treatment.
How it all began
It was an ordinary Friday evening and the Curtis family had gone to their favourite restaurant for dinner. When they got home, Robbie complained that his leg was sore and they noticed it was swollen. “We assumed he had fallen on the playground and bumped his knee,” says Sarah. “The swelling and pain went down during the night. But a few nights later he woke me up crying. It was swollen again. I remember telling Donald that wasn’t normal.”
“The doctors figured out I have cancer,” says Robbie. “And I have cats at home.” Despite the fact that he was diagnosed with acute lymphoblastic leukaemia in March 2018, Robbie is a chatterbox. “I’m four years old and that’s my little brother,” he says pointing at Erik, who is just 10 months old.
Finding a diagnosis
“We were very fortunate that we caught it early,” says Donald. “Leukaemia doesn’t present in one particular way. It’s a process of elimination to get to a diagnosis of leukaemia.”
Donald and Sarah took Robbie to the GP that Friday morning. “The GP couldn’t find anything clinically wrong. They sent us for an X-ray. Next they sent him for a blood test but he said he wasn’t really sure. On Saturday we met up with him again, this time in the casualty ward. They called him out because Robbie was screaming with pain – that’s when our GP said he wanted a second opinion and we saw a paediatrician.”
Donald and Sarah spent the weekend Googling conditions like juvenile rheumatoid arthritis. “We asked the doctor if it could be leukaemia. He told us he can’t exclude it but it’s not very high on the list,” says Donald.
Twenty-four hours later, after another round of blood tests, the Curtis family finally received the diagnosis: “It’s leukaemia and they’re expecting you in Cape Town.”
“We basically had two days to drop our lives and drive to Cape Town," says Sarah. “Actually it was one day,” Donald interjects. “We found out at 3pm on the Tuesday and we left at 9am on the Wednesday morning. We then spent the next 11 weeks in Cape Town.”
A new normal
“He was always a healthy child – he never got sick,” says Sarah. “The first two weeks were an absolute blur. I didn’t want to do any research on leukaemia. I really thought I would drive to Cape Town with my child and return home without him. I don’t remember much. You just have to take it in five-minute intervals. You enter a new normal. You have ups and downs, good days, bad days, positive days.”
“We're quite fortunate in the type of leukaemia he has,” says Donald. “You come in and you have no idea what is going on. It’s all new and it’s all very scary. You learn quite quickly what all the different tests, the forms etc. are.” The type of leukaemia Robbie has is the one with the best long-term prognosis. “It’s the one you would choose if you could.”
Robbie’s treatment is intense – he’s on steroids, he’s undergoing chemo and he must take antibiotics every single weekend for the next three years.
“We’ve done three phases – the first two were induction and consolidation, which is why we were in Cape Town. We did the maintenance phase in Knysna – Robbie had to take oral medication and have a blood test every Monday. Based on the results, they prescribe the dosage of the oral medication. Once in June and once in July we drove through on a Sunday, went into hospital on the Monday, finished up at 1pm and drove home.”
How did Robbie handle it? “He was very scared at the beginning – all the IV drips, lumbar punctures, the chemotherapy… it was overwhelming,” says Sarah.
“But I got a puppy!” Robbie says excitedly. “His name is Bolt.” Robbie loves animals and can’t wait to get home to cuddle his cats.
“Some days are better than other days. This morning he had a complete freak out. He screamed and shouted at everybody. He cried. They had to do a blood count and gave him an injection which is an intermuscular chemo treatment,” says Sarah.
“It really is sore. They inject it into your leg without any painkillers. The lumbar punctures are better because they sedate him,” says Donald. “He’s also on the 'red devil' chemo that makes his hair fall out. The last time we were in Cape Town his hair literally started to come out in patches. So we shaved it all off but now it’s grown back.”
“But now that he’s started on the red devil again, his hair is going to fall out again,” says Sarah. A few days after my meeting with the Curtis family, Robbie had to shave his hair again.
Robbie is currently undergoing chemo at the Red Cross Children’s Hospital until the end of October. After that he’ll be on oral chemo for two and a half years. “He’ll also have to come to Cape Town every month for blood counts and lumbar punctures also for the next two and a half years.”
While the long-term prognosis is good, the long-term effects of the chemo are unknown. “Robbie will have to be in remission for 10 years to be considered a survivor. He’ll be 14 and starting high school,” says Sarah.
“It’s changed him. He was always such a happy, chatty little boy. Now he has this anger. I just really hope that maybe he can go back to school next year,” Says Sarah.
“It’s a life-altering journey and puts everything into a completely different perspective. It’s very frustrating to have to watch them go through it because you feel powerless. He should be at school with his friends. He should be playing,” says Donald.
Sarah and Donald Curtis are currently running a raffle that will be drawn on 30 September 2018 to raise funds for Robbie's treatment. In addition, 20% of all funds raised will be donated to the Sunflower Fund and Red Cross Children's Hospital. You can support them here.
Image credit: Supplied