Hello, I'm Betty! For those of you who don’t know us, this is my gorgeous girl Aveline (who we call Ava for short) We have been part of this beautiful community for many years now and lots of you have seen my daughter’s grow up in this very special brand.
For those of you who don’t know Ava, I would like to share her story with you. On March 5th, 2021 my then 3 year old daughter was diagnosed with Acute Lymphoblastic Leukaemia (ALL). ALL is the most common form of childhood cancer. In Australia, approximately 220 kids a year are diagnosed with ALL. The cause of the disease is unknown. Just bad luck really.
It’s something you never think will happen to you until it does. I used to turn away from these kinds of stories once too as I found them hard to read. So thank you for reading this. The day before my child was diagnosed, I wasn’t a cancer mum either.
Over the course of the last 2 and a half years I watched my daughter endure countless medical procedures. I’ve held her down for procedures more times than I’d like to admit. Hospital became home and the staff became our 2nd family. I met families like ours, children like Ava whose childhood was ripped apart by cancer. I’ve been to funerals for children whose lives were taken by this disease.
The treatments for children are brutal. Some weeks she would be given 3 chemotherapy infusions plus daily steroids or a chemotherapy injection. One of these infusions has left her with neuropathy to the right side of her body. She struggles to walk for long and tires easily. She still uses a stroller at age 6. She also finds it difficult to write.
All in all, Aveline - my warrior princess, over the past two and a half years has had to endure:
122 days in hospital
21 blood transfusions
19 platelet transfusions
7 emergency admissions
13 lumbar punctures
34 chemotherapy infusions
831 oral doses of chemotherapy
24 chemotherapy injections
64 days of high dose steroids
28 days of immunotherapy treatment
These toxic treatments leave children with horrid side effects like liver damage, kidney and heart damage and the risk of secondary cancers forming. Two out of every 3 children develop chronic health issues as a result of their treatment And yet we are lucky. There are some cancers that even today, in 2023, remain incurable. I couldn’t imagine being told that my child had an incurable cancer.
As it stands currently, there are only 4 specific chemotherapy drugs that were made for children only. Most of these children still get adult chemotherapy treatments diluted down so they don’t kill them. We need kinder treatments, treatments that don’t kill growing cells in their bodies and leave them with nasty side effects. Treatments that won’t kill them period.
Since 1993, the Kids Cancer project has been able to commit over $70 million to research. Continued funding has increased the the average survival rate of childhood cancers to 86% - compared to just 10% in 1950 However cancer is still the biggest killer of children in Australia.
Ava is now in remission but her journey is not over yet. There will be monthly blood tests. Quarterly oncology reviews. Ava will be seen by a Dr for most of her life to get her blood checked. Every time she gets even a mild cold, antibiotics are started immediately so as to keep her white cell count lower. Elevated white cell counts in cancer kids spark the very real fear of rogue cells forming and cancer starting all over again.
A relapse would see us do the treatment all over again, plus radiation, and would almost certainly mean she would need a bone marrow transplant. I’ve seen children die from their treatment before they even get to that point so my mind can’t even go there. To be deemed completely cancer free, she must make it to 5 years post remission. It feels like forever away right now but I’m hopeful we will get her there.
On the 28th of September 2023 we will be releasing a dress and boys shirt named after Ava. $10 from every Ava dress or shirt sold will be donated to The kids' cancer project.