In a speech to Federal Parliamentarians last month, Canberra dad, David Wright, shared what it’s like to have a child experience cancer. His story is one of faith in science and gratitude to those who fund it. Read his speech here.
I am going to tell you a brief story about our family’s cancer journey. This is Annabelle, our 9-year-old daughter.
When she was two, and we were living in Canada, we noticed some pinpoint bruises. This is usually a sign of either low or poorly functioning platelets and we assumed it was due to a an immune condition called ITP where there are antibodies to the platelets which I believe is relatively common.
After weeks of medical testing and hospital admissions, we were told that she had cancer.
We weren’t sure the exact nature of her cancer, as it was very early in her illness. Science could detect an abnormality, but as it was so early, and symptoms were not too severe, we weren’t able to determine the exact type, just that it was a leukaemia.
We travelled back to Australia, where we split up our family, sending our son Oliver to Canberra to live with my parents while my wife Cristy and I enjoyed the hospitality of Sydney Children's Hospital, Randwick and Ronald McDonald House. As anyone can imagine, moving a five-year-old to another city, away from his seriously unwell sister and his parents can be very, very stressful.
Thanks to the work of Professor Glenn Marshall, we were told, alone, in a stressful doctor-parent conference, that Annabelle had acute myeloid leukaemia or, as it’s known, AML.
So, we started treatment immediately. We were fortunate to start treatment when we did, because there had been a recent change in treatment protocol.
In years gone by, kids with AML would be given chemotherapy, then a bone marrow transplant. The way a bone marrow transplant works is that patients are isolated from their family for weeks to months while doctors wait to see if the transplant has been successful and until there is return of immune function.
Annabelle underwent a different treatment protocol. At the end of her first cycle of chemotherapy her bone marrow was tested for evidence of leukaemia. This testing is done to determine the minimal residual disease.
Minimal Residual Disease or MRD is the name given to small numbers of leukaemia cells that remain in the person during treatment or after treatment when the patient is in remission.
Up until a few years before Annabelle was treated, few of the tests used to assess or detect cancer were sensitive enough to detect MRD. Now there are very sensitive molecular biology tests. These can measure minute levels of cancer cells, sometimes as low as one cancer cell in a million normal cells.
The tests are not simple, are often part of research or trials, and some have been accepted for routine clinical use.
Because of the tests that Annabelle received, it was determined that she had low minimal residual disease and therefore did not require a bone marrow transplant.
Annabelle received four cycles of chemotherapy during the second half of 2012. It was a very challenging time for all of us but as you can see today, she is happy, healthy and disease-free.
Aside from some minor allergies that she developed during her treatment, she is active, outgoing and confident. She celebrated the five year anniversary of achieving remission and being cancer-free, by walking up Canberra’s Mount Taylor 30 times in September last year. By doing so, she raised over $13,000 for The Kids’ Cancer Project during their Science Project tour.
There is a very particular reason why I mention MRD testing.
Last Friday, Cristy and I were lucky enough to be invited by The Kids’ Cancer Project to have a behind the scenes tour of the Children’s Cancer Institute (CCI) in Sydney. These two entities have worked together for years with the goal of zero childhood cancer. It was at CCI that much of the work on MRD testing was developed. This was achieved through the money and support provided by The Kids’ Cancer Project. Money that comes from influential people like you and everyday people like me.
This is just one research facility receiving money from The Kids’ Cancer Projects. There are dozens of projects being funded every year.
The Kids Cancer Project tagline is, ‘Science. Solutions. Survival’, to this I would add a fourth ‘S’ - Sponsors.
Thank you very much.