by Karin Voyatjes
September is Childhood Cancer Awareness month. Childhood Cancer Awareness month puts a spotlight on the types of cancers that largely affect children and raises awareness for childhood cancer research, treatment, patient support and survivor-ship related challenges.
My 5-year-old-daughter Alexa was diagnosed with Acute Lymphoblastic Leukemia (A.L.L) end October 2018 when she was just 3 years old.
Symptoms
During the lead-up to Alexa’s diagnosis, I noticed bruising on Alexa’s legs, and she suffered from night sweats. 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.
Diagnosis
I took her to a pediatrician for a checkup and she was misdiagnosed with tonsillitis and sent home with a course of antibiotics. The following day I decided to take Alexa to another pediatrician, blood tests were requested given the concern of bruising, paleness and night sweats.
Within hours the pediatrician called me instructing me to take Alexa to the emergency room immediately. She was admitted overnight to hospital for further testing.
The following morning her blood counts were repeated. Her blood counts were so dangerously low that she needed an emergency blood and platelet transfusion the next morning, this was the first of many blood and platelet transfusions she received during the first year of treatment. She also had a Bone Marrow biopsy and unfortunately within 48hours we got the diagnosis of Acute Lymphoblastic Leukemia.
What is Acute Lymphoblastic Leukemia?
A.L.L. stands for Acute Lymphoblastic Leukemia, it’s a type of Blood cancer which usually gets worse quickly if it is not treated. The treatment for A.L.L is roughly 2 -3 years long.
Treatment is split into 2 main phases, Frontline and the Maintenance phase. Frontline starts with an intense Induction phase to kill the leukemia cells in the blood and bone marrow and put the disease into remission. After induction the child moves into a Consolidation phase which can last for many months, and the aim is to rid the body of any remaining cells that could begin to grow and cause the leukemia to return.
Alexa’s Treatment
Alexa has now been in treatment for nearly 2 years (685 days to be exact) with a treatment completion set for January 2021.
She’s had to endure an intense treatment plan consisting of monthly chemotherapy in hospital, daily chemotherapy at home, countless blood tests, around 20 blood transfusions and 20 platelet transfusions, inpatient stays, fevers, sickness, pain and different chemotherapy drugs that are rotated depending on the treatment cycle she is in.
The Gold Ribbon
Childhood cancer survival rates have increased significantly but it’s not 100% survival rates. Research funding for childhood cancer is still relatively low and kids are exposed to adult drugs that have lasting side effects.
Awareness helps 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 for Childhood Cancer you can wear a Gold Ribbon during the month. The Gold Ribbon is the international awareness symbol of Childhood Cancer. Gold represents how precious children are and the resiliency of childhood cancer heroes.
Karin Voyatjes
Chatting further with Karin…
How did the diagnosis impact the family?
“Childhood cancer like any serious illness puts a huge amount of pressure on family life. I spent a great deal of time in hospital with Alexa and this had a big impact on my son who was 4 years old at the time. Alexa also didn’t want to play with him during the first few months of treatment as she was feeling unwell from treatment. He was too young to fully understand how ill she was.
I did continue working and it took a lot of planning and support from different people. My work was very close to hospital so I could literally walk from work to hospital.”
How did you explain Alexa the diagnosis?
“I didn’t tell Alexa she had Cancer. I did a lot of research on childhood cancer support, and found a great video (Paul and the dragon) that was appropriate for children, and always told to her in advance when we went for treatment and that she had to get magic water (chemo) and magic blood/platelets during transfusions. The start of treatment was very hard on her; overnight she went from a fun loving carefree toddler to admitted to hospital for chemotherapy.”
Where do you get support?
“I was fortunate that my parents moved in with us from abroad to support us. This helped me to continue working, and they also helped with fetching son at school etc. I also found a great child psychologist who had experience in childhood cancer and she helped Alexa a great deal.”
What about schooling?
“Alexa was not allowed to attend school during her front-line treatment which was nearly a year. Therefore, she had to stop FS1 and stay at home for nearly a year. Once she started Maintenance, she could attend school. The kids were very nice and supportive when she resumed school. She did not have any hair at that time, and most kids were ok with that.”
How did COVID impact the treatment?
“We were lucky that her treatment resumed as normal. She has to get blood tests more regularly to check her immunity level and her chemo is adjusted accordingly to ensure her immunity is high enough to withstand any viruses.”
Treatment in Dubai: where to go?
“There are a few hospitals that support pediatric oncology.”
What are the treatment side effects?
“Alexa suffered a lot with nausea, vomiting, fevers, pain in her bones and joints, headaches, difficulty to walk from one of the chemo’s, stomach pain. Unfortunately, the side effects are endless.”
The Cancer Majlis
Karin shares Alexa story on Instagram @alexa_voyatjes
Useful resources:
Also, the following UK charities sell gold ribbons, support childhood cancer research and/or support families on this journey: