“It all started with a bruise,” says Lebanese expat Rim Obeid, a Dubai-based mum of two whose eldest boy, Rafi, 3, is currently battling one of the most common childhood cancers, B-cell Acute Lymphoblastic Leukemia.
“I noticed that he started getting small bruises, just like any other active child. However, with time, the bruises became more spread out across his body, on locations that are easily bumped during the day - such as his chest, under his eye, on his knee and hips…”
Rim took her then two-year-old son to the pediatrician for a check-up. “The doctor examined him from top to toe and said he seemed fine. But due to the frequency and size of the bruises, she said we should do some blood tests to see what was going on.”
The blood tests all came back normal. The only possible cause for concern was that his platelets – colourless blood cells which help blood to clot - were a little low. But as he had recently recovered from a viral infection, the doctor said this was considered to be normal too. “But no, my heart said something else,” says Rim. “Even though I am from a medical background and I knew that the science said his blood counts were normal, still I could not ignore my gut instinct as a mother.”
Mother’s intuition can be stronger than science
Rim has a degree in Clinical Laboratory Sciences, a diploma in Molecular Biology and a Masters in Bio-technology. Her own experience as a lab technician analyzing blood cells meant that she knew in her head that the results should mean her little boy was fine. But her mother’s intuition told her otherwise. “My heart guided me and told me ‘keep testing your child, repeat and repeat and repeat the tests day after day’.”
At Rim’s request they were referred to a paediatric haemotologist, but his diary was fully booked. “So I went to wait outside his office,” says Rim. “I told him he had to see my child, and luckily he was very responsive.”
Further and more technical blood tests were done, and again the results came back normal, except for the platelets. Although international guidelines state that blood tests should be repeated every two to three weeks in instances like this, Rim insisted they be done every two days. “The doctor said nothing would change in only two days. Everyone was telling me ‘He’s OK, don’t worry, his results are normal, there’s nothing suspicious. But I followed my heart and insisted. And then the blasts appeared.”
“He could have bled to death in my arms”
After several weeks of six to seven regular blood tests at Rim’s insistence, Rafi’s platelet count showed no sign of recovering, and the bruising had become very severe. “It got to the point where if I just touched him my finger would leave a bruise. Even the elastic on his socks would bruise his ankles,” says Rim.
Finally, one of the blood tests showed up some blasts - abnormal white blood cells that begin to fill up the bone marrow and are a hallmark of leukemia.
After a bone marrow biopsy, Rafi was diagnosed with B-cell acute lymphoblastic leukemia on 24 December 2019, at the age of two and a half. By this time his platelet level had reduced to the point where he would have been in grave danger if he hadn’t been monitored so carefully by his mother. “His platelets had dropped from 23,000 to just 6,000. He might have bled to death in my arms.”
Little Rafi’s chemotherapy journey started that night on Christmas Eve – changing the associations with his favourite festival forever.
Parents should trust their instincts
After a period of intensive chemotherapy, which included complications such as a brain thrombosis, Rafi is now one third of the way through his maintenance treatment, which will continue until 2023, and has regained his immunity levels.
“Rafi is in maintenance now and is stable,” says Rim. “Now he is totally fine and taking oral chemo, which is like a pill anybody can take every day. He is very positive, very strong and he knows how to take care of himself in terms of precautions and what he can and can’t eat because of the risk of contamination. If it weren’t for COVID he would be going to nursery like any other kid.”
Although getting an early diagnosis of leukemia doesn’t make a difference to the treatment plan that is required (unlike in the case of certain tumours, where early diagnosis can make all the difference), Rim’s attentive insistence as a mother meant that her son didn’t suffer from any of the other early symptoms of leukemia or any of the complications that can happen before diagnosis.
She says that it’s important to raise greater awareness of childhood cancer so that parents know to take their children for regular check-ups and also to trust their instinct when it comes to their child’s health. “No matter how advanced medicine is and how much we trust our doctors, as mums we also need to trust our gut and our instinct.”
Every year, more than 400,000 children and adolescents below 20, are diagnosed with cancer.
And yet only 4% of the US Government’s spending on cancer research goes to research into childhood cancers.
International Childhood Cancer Day is held annually on February 15 and is a global collaborative campaign to raise awareness about childhood cancer, and to express support for children and adolescents with cancer, the survivors and their families.
The day promotes increased appreciation and deeper understanding of issues and challenges relevant to childhood cancer and impacting on children/adolescents with cancer, the survivors, their families and the society as a whole.
With greater awareness comes better funding, which can help to improve the treatment options for children, not only improving prognoses, but also reducing the often severe, long-term side effects that childhood cancer survivors are often left with after recovering from treatment.
“The stress of my son’s cancer treatment gave me breast cancer”
“I never thought that children had cancer,” says British mum of two Miriam Jarvis, whose son Oliver was treated for Wilms tumour – a form of kidney cancer – in Dubai between 2018 and 2019. “I never thought my son would have cancer at the age of three. I thought cancer was just for older people. And then when Olly started his journey and I saw the number of children being treated for cancer in the paediatric ward, I realised that it was a really big thing, but not many people were being made aware of it.”
Miriam’s words echo many people’s impression of paediatric cancer – that it doesn’t really happen, or it only happens to other people’s kids.
But cancer is the leading cause of death by disease among children. Even in the US, where cancer detection and treatment is advanced and effective, nearly 1,800 children die of the disease in a year. Every day, 43 children in the US are expected to be diagnosed with cancer, but a lack of awareness means that research into it is underfunded and therefore treatment options are not as advanced as they could be.
More than 95% of childhood cancer survivors have significant health-related issues because of the current treatment options, which can range from chronic health problems, to secondary cancers, cognitive impairments and a shortened lifespan due to harsh medical treatments. This is the reality for families battling childhood cancer. And it’s why International Childhood Cancer Day, marked on February 15 every year, is so important to raise awareness.
• Brain and spinal cord tumors
• Wilms tumor
• Lymphoma (including both Hodgkin and non-Hodgkin)
• Bone cancer (including osteosarcoma and Ewing sarcoma)
Raising awareness will help save lives
“More awareness needs to be raised because whenever Olly’s platelets were down or he needed a blood transfusion it was hard work because the hospital didn’t always have it,” says Miriam. “So then I had to ask friends and family members to go and donate. If there was more awareness that there are all these children in need of blood and platelets then maybe people would just go without being asked to donate.”
It’s also important to raise awareness of the journey that the parents of children with cancer go through, says Miriam. “As for the main caretaker of a child with cancer, it caused so much stress for me that I ended up with cancer.
“It’s probably the worst thing a parent can ever see – watching their child go through cancer treatment. It’s hard to explain. I’m pretty sure the stress caused me to get breast cancer whilst Olly was going through treatment.”
Both Miriam and Oliver have completed their treatment journeys now and are fine, but Miriam says that the lack of awareness of childhood cancer – and the awkwardness that others feel when they learn your child has cancer – can mean it is hard to find support. The stress then weighs heavily on the main caretaker’s shoulders. “It’s very hard to describe how you feel because you always want to be positive and come across as ‘I can do this, everything is good, the end of his treatment is coming soon,’ but it’s not until you finish treatment you realise how exhausted you really were.”
Dubai-based mum Karin Voyatjes’ five-year-old daughter Alexa finished her two-year battle with leukemia in early February 2021. She says that it was a lonely journey for her as a parent supporting a child with cancer, but that it can help to connect with others in the same situation. “From my personal experience in the UAE there is a small community of childhood cancer and hence the loneliness. Over time met some mums in the same boat and set up a WhatsApp group “The Golden Moms”, specifically for mums of kids with cancer treated in the UAE.”
ASK HOW THEY ARE DOING
People often feel awkward when they learn you have a child with cancer, says Karin. “If you meet anyone on this journey, don’t shy away: ask them how are they doing. I know it’s not an easy topic to talk to but a lot of parents on this journey carry a heavy burden having to manage treatment and their child’s diagnosis.”
DON’T ASK WHAT CAUSED THE CANCER
Rim Obeid says that one of the first things that a parent whose child has a cancer diagnosis feels is, “where did I go wrong?”. But it is not known what causes childhood cancer and asking a parent about it will make them feel worse. “My request is, please do not ask parents ‘why this happened?’ Do not ask for any reasons or explanations.”
DON’T OFFER ALTERNATIVE REMEDIES
Rim adds that it doesn’t help for people to recommend alternative therapies: “Do not offer herbs, or medications, or food to help treatment.”
What are the symptoms of childhood cancer?
Dr Arun Karanwal, Specialist Medical Oncology at Prime Hospital Dubai, shares symptoms for parents to look out for:
"Cancer in children is not common, but it’s important to have your child checked by a doctor if they have unusual signs or symptoms that do not go away, such as:
- An unusual lump or swelling
- Unexplained paleness and loss of energy
- Easy bruising
- An ongoing pain in one area of the body
- Unexplained fever or illness that doesn’t go away
- Frequent headaches, often with vomiting
- Sudden eye or vision changes
- Sudden unexplained weight loss