Alexa is a bubbly, feisty, extroverted four-year-old living in Dubai who loves ballet and dressing up her dolls.
She also has cancer, and needs to have daily oral chemotherapy sessions at home, with monthly chemo delivered via a lumbar puncture at hospital.
But this is a positive period for Alexa, who is over halfway through the less-invasive Maintenance phase of her treatment for Acute Lymphoblastic Leukemia (ALL), which is the most common childhood cancer.
In previous phases of her treatment she had to be sedated in order to have chemotherapy injected into her spine: “I would always be advised to leave the room at this point as the reality of seeing your child under sedation while they inject the chemotherapy directly into the lower part of the spinal column may be an image you could never forget,” says Alexa’s mother, Karin Voyatjes. “But my husband or I were always just outside in case anything happened.”
This is just part of the reality of parenting a child with cancer. Juggling the usual parenting decisions over screen time and junk food treats, with nights spent in hospital and days sourcing children's wigs so your daughter can style her hair.
While most parents have been struggling with working from home these past few months, British/ South African expat Karin was already accustomed to working from hospital once a week, conducting her high-powered role as the head of finance for a corporate from her daughter’s bedside.
And yet, Alexa is one of the lucky ones. She is receiving the treatment she needs, putting her into the 98% of children who go into remission after treatment for ALL, and hopefully into the 90% of children who are cured from the disease.
But to get the right treatment, you need to know that your child has the disease in the first place. Which is why Karin is keen to raise awareness about the symptoms of childhood cancer, as well as highlight the fact that research into it is underfunded.
“Childhood cancer survival rates have increased significantly but it’s not 100% survival rates,” says Karin. “Research funding for childhood cancer is still relatively low and kids are exposed to adult drugs that have lasting side effects.”
Knowing the signs
Many of the symptoms of childhood cancer can be mistaken for other ailments, so it’s important to know the possible signs – and to be persistent if you are worried.
“During the lead up to Alexa’s diagnosis I noticed bruising on Alexa’s legs, and she suffered from night sweats,” says Karin, who is also mother to Alexa’s older brother Pericles, who is now 6.
“I initially did not pay too much attention to this, but I started getting concerned when she appeared very pale and tired and had a change in temperament.
“I also noticed a distinct dark blue bruise behind her ear, while she simultaneously developed a fever.”
Karin took Alexa to a pediatrician for a checkup, but she was misdiagnosed with tonsillitis and sent home with a course of antibiotics.
When I first took Alexa to the doctor she was misdiagnosed with tonsillitis and sent home
Luckily Karin did not give up that easily.
“The following day I decided to take Alexa to another pediatrician, and she ran some blood tests, given the concern of bruising, paleness and night sweats.”
Within five hours the doctor called Karin, telling her to take Alexa to the emergency room immediately. She was admitted to hospital for further testing.
“Her blood counts were so dangerously low that she needed an emergency blood and platelet transfusion the next morning.”
This was to be the first of many blood and platelet transfusions Alexa received during the first year of her treatment, which has been ongoing over the past two years – “685 days to be exact,” says Karin.
Alexa had a bone-marrow biopsy the next morning and within 48 hours they got the diagnosis of Acute Lymphoblastic Leukemia.
Dealing with the diagnosis
Karin and her husband were devastated.
“As a parent you never expect to hear the words your child has cancer,” Karin says.
“It came as a huge shock and I was in denial and total disbelief for the first few weeks.
“During the first two days waiting for the results I tried to convince myself that she had a viral infection that had caused her counts to drop so low.
“Deep-down I knew that this was a very low probability, but I wanted to continue having hope and being positive for my child.
“I was left with a deep sense of anxiety and uncertainty as we started her on a grueling plan to save her life two days later.”
Alexa was only three years old when she was diagnosed, so Karin did not tell her she has cancer.
“To this day I have never mentioned it. When she was in the initial stage of treatment I found a great video explaining childhood cancer ‘Paul and the dragon’ and she watched that and could understand that she was ill and needed magic water (chemo) to make her better.”
Karin set about doing a huge amount of research to help her daughter’s emotional wellbeing during the early stages of treatment, including taking her to a child psychologist who had experience with childhood cancer. “This was a lifeline for me and helped support her emotional and mental state and made treatment days a little easier.”
The treatment journey
The treatment for Acute Lymphoblastic Leukemia is intense, beginning with an aggressive Induction phase to kill the cancer cells in the blood and bone marrow, followed up by a Consolidation phase of several months to rid the body of any remaining cells.
“A typical week would involve occasional spinal taps, which meant Alexa had to be fasting until after the procedures. Then the team would access Alexa’s port - an implanted device which allows easy access to a patient’s vein. She is then connected to an IV. Fluids and Chemo is transmitted via the IV into the port and her body.”
During intense cycles Karin would rotate shifts in the hospital with her mother or husband, but always ensured she slept with Alexa in hospital. “Luckily my work was very close to hospital so it made the juggling easier.”
Karin says the most difficult moment was starting the treatment, not knowing what the next few months would hold. “We also had a few extremely stressful hospital admissions, some during the intense part of treatment, where Alexa became extremely sick with secondary infections including pneumonia, fevers and she lost a lot of weight.”
It also had an enormous impact on the rest of her family, especially her son, who was 4 years old at the time of Alexa’s diagnosis. “I spent a great deal of time with Alexa in hospital, and my son did not understand why. My parents came to live with us from abroad for most of the first year to support us during the most intense parts of treatment. This was heartbreaking to me and left me with a huge amount of guilt.”
Parenting a child with cancer
When talking about childhood cancer it’s easy to forget that the disease is only one element of a child’s physical condition – they are still children with their own vivid personalities and quirky characters.
“Alexa finds joy in the smallest things,” says Karin. “Her excitement to take the dogs for a walk or go for an ice cream or bake cookies. Alexa’s infectious smile and resilience amazes and motivates me daily.”
The cycle of treatments has also made her very resilient – and mature.
“She has had to grow up overnight, and she’s become a really good ‘negotiator’. We are always ‘negotiating’ with her to ensure she eats protein or a piece of fruit before she is allowed to have potato chips.”
However, there’s no doubt that parenting a child with cancer is extremely difficult. “I had to adjust my parenting style with her and also gave her more flexibility – she was allowed to watch iPad during intense treatment and I understood when she was unwell due to chemo or steroids.
“But I kept a strict schedule with my son, which is totally unfair from his point of view but due to her side effects and poor condition I was more flexible with her.
“Since maintenance I have started being more strict with her, but she is still suffering side effects from chemo and steroids. I am also aware that she does get tired and so I have to allow her to progress at her own pace, while keeping a disciplined framework. So it’s a fine balance.”
The impact of COVID-19
Karin says they were fortunate that Alexa’s treatment resumed during Covid-19. “She has more frequent blood tests since COVID started to ensure her immunity level is high enough to fight off basic infections.”
In her treatment hospital the pediatric oncology floor was moved to a separate wing that was totally COVID-free. “We took extra precaution with her and ensured she was kept in isolation for most of the first 5 months.”
Karin says that there has been a minor upside to the pandemic in one way: “Due to social distancing and mask-wearing people understand better what it is like for people who are immune compromised.”
However it comes at a steep price: Alexa was already in isolation for more than a year during her first intense phase of treatment, but before COVID she had just started to start socializing and go to school and do her adored ballet lessons again.
“She had to go back into isolation literally four months after we started letting her enjoy school and play dates. It has had a huge emotional impact.
Alexa is currently in the last phase of Maintenance treatment, which is set to finish in January 2021, and Karin says she is doing relatively well. “I pray for a full recovery and that she will continue to stay in remission. As a mum I only want her to be happy and enjoy her childhood as much as possible. When she grows up she says she wants to be a chef to cook for mummy.”
September is Childhood Cancer Awareness month, and Karin and little Alexa would love to see the Burj Khalifa lit up in gold – the colour chosen to represent the preciousness of children – as well people wearing gold ribbons to help raise awareness.
“Awareness is key to highlight childhood cancer, the treatment kids go through and some of the long term impact it has due to the intense treatment.
“It’s also a month for people to be aware of the symptoms to ensure early diagnosis and treatment.”
“If you want to help raise awareness you can wear a Gold Ribbon during the month which is the international awareness symbol of Childhood Cancer. The Gold color represents how precious children are and the resiliency of childhood cancer heroes.
Her advice to any other families who are newly dealing with a diagnosis of childhood cancer is, "take it one day at a time, and find a good support network to help you navigate through this."
In Acute Lymphoblastic Leukemia (ALL), the bone marrow makes too many lymphoid blast cells. These lymphoblast cells are immature and are unable to grow into normal lymphocytes. These cells crowd out normal white blood cells. Without enough normal white blood cells, the body has a harder time fighting infections.
Leukemia is the most common type of cancer affecting children. Acute lymphoblastic leukemia (ALL) is the most common type of leukemia diagnosed in children, accounting for nearly 78% of Leukemia diagnosed in the UK and about 34% of all cancers in children.
ALL typically occurs between the ages of 2 and 4, and is more common in males than females. Leukemia begins in bone marrow and spreads to the blood, and can then spread to the organs. Three out of four childhood leukemia cases are ALL.
ALL treatment is roughly two years long for girls and 2-3 years for boys.
Symptoms of ALL
• Bone and joint pain
• Weight loss