Bubbly and bright Alexa, 5, beams from beneath her golden face mask as she rings the End of Treatment Bell on a hospital ward in Dubai at 3pm on 3 February 2021 to mark the end of her more than two-year battle with cancer, just months after she also kicked COVID-19 to the curb.
Surrounded by her parents, older brother Pericles and the team from the oncology ward who treated her, South African/ British Alexa Voyatjes is brimming over with pride and excitement as she celebrates the milestone with her family, 27 months after she was first diagnosed with Acute Lymphoblastic Leukemia (ALL) at the age of three.
Alexa’s shining smile and glossy hair mean that you would never think her five-year-old body has spent the past 832 days being pumped with powerful chemotherapy drugs, nor that she’s only recently recovered from COVID-19. She tested positive for the virus on 31 August 2020 and then fought COVID-19 for six weeks, continuing to test positive for longer than normal due to her compromised immune system.
But, despite her small frame, Alexa is a fighter, and her sunny outlook and determination even through the darkest days of treatment has been an inspiration, says her mother, Karin Voyatjes. “Alexa finds joy in the smallest things,” says Karin. “She has so much 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.”
A treatment journey that started with maternal intuition
Little Alexa was diagnosed with Acute Lymphoblastic Leukemia (ALL) in October 2018 at the age of three after being rushed to the emergency room, having received some worrying blood test results following a paediatrician appointment. “We were originally dismissed from one doctor with the misdiagnosis of tonsillitis, but I took her to different doctor the next day, and they found her blood counts were so dangerously low that she needed an emergency blood and platelet transfusion,” says her mother, Karin Voyatjes, whose maternal intuition and persistence saved Alexa’s life.
Many of the symptoms of childhood cancer can be mistaken for other ailments, so it’s common to be misdiagnosed at first. “During the lead up to Alexa’s diagnosis I noticed bruising on Alexa’s legs, and she suffered from night sweats,” says Karin. “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.”
What are the symptoms of childhood cancer?
• Continued, unexplained weight loss
• Headaches, often with early morning vomiting
• Increased swelling or persistent pain in the bones, joints, back, or legs
• Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
• Development of excessive bruising, bleeding, or rash
• Constant, frequent, or persistent infections
• A whitish color behind the pupil
• Nausea that persists or vomiting without nausea
• Constant tiredness or noticeable paleness
• Eye or vision changes that occur suddenly and persist
• Recurring or persistent fevers of unknown origin
If you are concerned about any changes in your child, talk with your family doctor.
Thanks to her mother’s persistence, Alexa received the leukemia diagnosis, and what followed was a gruelling and emotional treatment journey, which saw the little girl go through multiple long-term hospital stays and intensive, invasive chemotherapy, including regularly being pumped with potent, nausea-inducing drug infusions via a lumbar puncture in her spine. Alexa lost her hair multiple times, was twice hospitalized for three weeks at a time with pneumonia, shrank down to just 11kg and at one point was living solely on pediatric electrolyte solutions, since the nausea made her unable to keep anything more substantial down.
What it means to ring the bell
To finally come to the end of 832 days of treatment, and being able to mark this by “ringing the bell”, is a monumental milestone for Alexa’s family – who donated the special paediatric End of Treatment Bell to the Dubai hospital ward where Alexa received treatment. “Ringing the end of treatment bell is a popular tradition for those who have been through cancer therapy to symbolize that they are starting a new chapter,” says Karin.
The hospital has also created a vibrant wall mural behind the bell, to add some much-needed colour and hope to the ward on which children of all ages bravely battle cancer, all hoping and praying for the day that they, too, will be able to ring that bell to mark the end of their own journey.
“Today we are celebrating with the oncology team at the hospital and Alexa is very excited,” says Karin. “I don’t think she understands the significance of everything, but she’s just so happy. All she talks about is getting her port-a-cath out,” says Karin, referring to the medical device that is inserted under the skin in the chest to enable easier delivery of chemo drugs. “Shes’ just so happy that she doesn’t have to have any more chemo, she’s happy that she can have rainbow cake and presents, and she’s happy that her port will come out.”
“Poison that saved her life”
While marking the end of Alexa’s treatment is a huge celebration for her family, her mother Karin admits that she has some mixed feelings about it.
Although it is well known that receiving chemotherapy is an intensely unpleasant experience, and the powerful chemicals often have severe side effects, it is also the only thing that will defeat the cancer. “I distinctly recall taking Alexa to her first chemo appointment and how difficult it was,” says Karin. “Knowing you have to take your child to be given what is essentially poison is incredibly difficult, but it saves their life and you can’t do without it. All the drugs you give them have got horrible side effects, but you have no choice – you have to give it to them to save their life.”
Alexa’s bone marrow biopsies have registered as clear of leukemia since April 2019, meaning she is in remission – but there is always the specter of relapse on the horizon (cancer patients usually have to remain clear of cancer for five years after stopping treatment to be classed as ‘cured’), and Karin says that in some ways the chemotherapy has functioned like a “safety net”.
How does Chemotherapy work?
Chemotherapy is the use of drugs to destroy cancer cells. It usually works by keeping the cancer cells from growing, dividing, and making more cells. Because cancer cells usually grow and divide faster than normal cells, chemotherapy has more of an effect on cancer cells. However, the drugs used for chemotherapy are powerful, and they can still cause damage to healthy cells. Side effects depend on the person and type of treatment but can include tiredness, nausea, hair loss, greater susceptibility to infections, bruising and bleeding, among others.
“I’ve become quite anxious about Alexa finishing treatment,” explains Karin. “Of course there’s huge excitement, but we are also going out into the unknown now.
“I will not miss chemo and I will not miss hospitals and I will not miss seeing my child in a huge amount of pain because of steroids or chemo or having blood and platelet transfusions,” continues Karin. “I am of course extremely grateful for being at this point of stopping treatment and it’s an amazing new start. But any parent who’s been through this will always have that little bit of anxiety about it coming back.”
Battling cancer and COVID-19
Alexa’s treatment journey was made all the more traumatic by the onset of the pandemic – which also led to Alexa catching COVID-19, during which she and the family had to quarantine for the six weeks that she continued to test positive. “Unfortunately the day after one of her chemotherapy hospital appointments we got the news that she had tested positive for COVID-19 and it was a huge shock, I felt like all of the blood was drained out of my body,” says Alexa’s mum Karin.
Alexa was receiving her chemo at a COVID-free hospital, so the fact she tested positive also meant that she had to move hospitals to continue her treatment, which caused disruption and affected her cancer treatment schedule.
Alexa’s father and brother also tested positive, but her mother did not, so it was up to Karin to monitor them all, while also juggling her full-time job. “It’s impossible to self-isolate from a child who’s got cancer with COVID-19,” explains Karin. “I was double masked and extremely careful. I just checked on her every few hours, measuring her oxygen and her temperature – my son was sick too but he was asymptomatic, and my husband had mild flu-like symptoms, so I was the main carer for Alexa during that time.”
Luckily Alexa’s symptoms were not too severe – a mild fever and some vomiting, which may have also been linked to the chemotherapy – but because of her compromised immune system due to the chemo she continued to test positive for six weeks.
Alexa’s immunity means that she has to be even more cautious than we all do during the pandemic: “Alexa will always have to be more careful, but she is extremely well trained with washing hands, not sanitising and wearing masks,” says Karin. “We need to be very careful because her immunity has been impacted significantly by the chemotherapy, so she got an immunoglobulin transfusion a few weeks back and will get one every six weeks to help with her antibodies.”
A new chapter
Ending the treatment journey means the beginning of a fresh new chapter for Alexa and her family. Alexa – who loves ballet and playing with dolls – will hopefully soon be able to get back into more sports and activities, and she is especially excited about being able to swim again – which she has been unable to do so far because of the medical port-a-cath embedded in her skin. “I just hope and pray Alexa stays cancer-free,” says Karin. “I really just want her to live a life without worrying about chemo and steroids and hospitals. I want her to have a carefree life and just be happy.”
Parenting a child with cancer is a lonely journey, says Karin, and says that anyone else in a similar position should not be afraid to reach out. “You need to look after yourself, you need to ensure that you have the right support around you for you and your child. If you just find a little grain of hope to hang on to and just push forward for the child’s sake, you will get to the end of the treatment. Just hang in there.”
Karin has started her own support group for UAE-based parents who have children with cancer, and she wishes to raise awareness of that, as well as for childhood cancer in general.
February 15 is World Childhood Cancer Day, and one of the most important elements in the fight against cancer is early diagnosis, which can make a huge difference to a child’s prognosis. It’s therefore important for parents to be aware of the potential symptoms, and to seek a second opinion if they feel doctor has not made the right diagnosis.
As Alexa – a little girl who has managed to defeat both cancer and COVID-19 – rings the bell for a fresh chapter in her own life, we can all take a lesson from her. Stick to the COVID precautions, wear your mask, and stay positive. One day soon hopefully we will all be ringing the bell for the end of COVID-19.