And why is it so hard?
Is it that we’re afraid of being perceived as weak, needy, or less than?
Is it that we’re afraid of being let down?
That we’re not worthy of support?
Or are we afraid of the likelihood that the world isn’t such a bad place after all?
I am extremely humbled as I write this in a moment of utter fear and contemplation.
My name is Stefan Okuka and I reach out my hand on behalf of my father and best friend, Dragan Okuka, who is currently on the tail end of a 5 yearlong battle with a rare and still relatively unknown cancer called Multiple Myeloma, commonly referred to as Myeloma.
WHO IS DRAGAN OKUKA?
He is a son, a friend, a brother, a husband, a coach, much like your very own but to me he is also my dad. He has given himself to illuminating the hurdles of life to kids through the safe space of basketball for over 40 years. To this day I relate most challenges I come across with the lessons that he taught me on the court. He showed me that happiness and success come from gratitude and sacrifice and that we are stronger together.
My dad sacrificed everything in order to give me a chance at my dreams by immigrating to Canada in 1995 with my mom. To me he has always embodied selflessness even when we didn’t have much, after all his name means 'beloved'. The love and support around him has been surreal in the last couple of months. Such support is evident of how many lives he has truly touched throughout his journey.
Recently I asked a friend of mine why this experience has affected her so deeply and she said, “he sees me for me”. That’s Dragan in a nutshell. No matter who you or what we are he is able to pinpoint the humanity in all of us. I’m just lucky enough to have been raised by that understanding.
After visiting him at the hospital during Christmas he told me a very simple philosophy:
“Find a way to do what you love and help people when you can.”
Well here is my chance, pop. This one’s for you.
- Everyday 9 Canadians are diagnosed with Myeloma
- In the United States, 1 in 132 people will be diagnosed with the disease
- Over 32,000 new cases in 2019 alone.
- Approximately 100,000 deaths globally in 2016
- The survival rate is 5 years if caught early enough for about 50% of people
--> A statistic that has taken over 10 years of research and experimental therapies to achieve.
WHAT IS MULTIPLE MYELOMA?
Myeloma is a blood cancer that affects the auto-immune system by reducing the number of normal antibodies your body produces making it difficult for people to fight off disease and infection, the cause of which is still unknown.
Unlike most cancers that are localized in a tumour, Myeloma cells multiply in the bone marrow interfering with healthy red and white blood cells. In other words, Myeloma exists throughout the body where the bone marrow is most active, the symptoms of which many people will rarely ever experience in the early stages of the disease.
Despite the growing prevalence of the disease, to date there is still no cure.
DRAGAN’S HURDLES (THE LAST 5 YEARS)
His initial diagnosis came in December 2015 while he was in the best shape of his life at age 60 with zero symptoms to show for.
He received his first round of chemotherapy from May to October 2016 to get him ready for what was to come next.
He then received a stem cell transplant on thanksgiving weekend in October 2016.
And then after some time we got our first win, remission.
Unfortunately, due to the re-occurring nature of the disease we knew that one day it was bound to come back. We have lived with that fear every day for the past 4 years.
Dragan was put on a maintenance drug called Revlimid known to suppress the growth of the cancer.
Late last year we got the call and he was put back on chemotherapy, this time it was a drug known as DvD; although, new on the market it had shown some signs of promise in recent phase II clinic trials.
To our surprise, and under his oncologist's very close care he was never notified that the drug wasn’t working. He was advised to keep taking the drug instead of changing the treatment. And despite months of complaining about a growing pain in his back no additional tests were done to understand the root cause of the pain. Instead, he was just given higher and higher doses of pain killers.
This led to a startling finding that the cancer had spread.
He found this out on the night of Dec. 18th, 2019 by the emergency room doctor who looked at his MRI that was taken two months prior. The emergency room doctor was shocked to find out that his oncologist at the time never notified our family that the cancer had metastasized (spread).
Emergency overnight spinal cord surgery ensued on the 19th of December 2019 to remove a tumour that was rapidly debilitating the use of his legs, by the hour.
The next morning, he was advised that he likely wouldn’t ever be able to walk again.
However, two days later, he was walking much to everyone's surprise.
A true testament of how he has approached every challenge throughout his life.
Radiation was the next set of treatment to deal with the second tumour.
Followed by another round of an experimental yet optimistic new chemotherapy drug called Pomalidomide that has been known to be too toxic for over 60% of the patients. Unfortunately, he was in that 60%.
Two weeks ago, he was given a life expectancy of 2-3 days and once again, he proved everyone wrong and is still here fighting the good fight.
It has come with an undeniable amount of pain which has slowly taken its toll.
THE TURNING POINT
At this point conventional medicine is not working but it is clear that his body hasn’t given up.
After years of surgery, chemotherapy, and radiation, we are now on our own.
Through extensive research we have found a clinic in Japan that offers a product that has been proven to be successful in treating auto-immune diseases as well as cancer. However, the treatment is extremely expensive.
Our goal is to raise $20,000 in order to help cover expenses, treatments, additional specialist appointments, and the correct amount of medicine.
The product is known as GcMAF, a medicine developed in Japan to combat auto-immune diseases and cancers. Unlike chemotherapy that is known to target both healthy cells and cancer cells, GcMAF only targets cancer cells by activating macrophage cells responsible for fighting infection and disease. GcMAF is a vitamin D-binding protein naturally found in the body.
Any remaining donations will be contributed to Myeloma Canada, a research-based Non-For-Profit Organization that is spearheading the fight against this still relatively unknown blood cancer.
HOW YOU CAN HELP
The situation is very urgent and any amount helps. I understand that there are people that would love to donate but may not be able to in which case all I ask of you is to simply share it with your network of friends, family, and colleagues.
Please share the link on your social media timelines such as, facebook, Instagram, twitter, and any other platforms that can get the word out. At this point we are racing against the clock.
To get back to coaching so he can help guide the next generation of kids to navigate life through the lessons learned on the basketball court as he has done for over 4 decades.
The fight of my lifetime has just begun.
After spending every day and night for the past month by his side at the hospital I have seen many others facing a similar fight.
I only wish to continue doing my part in finding a cure for this illness not just for my father but for everyone else. I will be reaching out to Myeloma Canada in order to raise money through charitable events and online crowdfunding campaigns for other people going through the same experience.
These are my first few steps.
Your support means the world to my family. It has been a stressful rollercoaster of emotions that come in waves and don't seem to stop.
The days have all blended into one.
And the clock always seems to be at the same time when I look at it.
But we were built by light in order to shine in the dark.
And so in faith we trust.
On behalf of my dad, Dragan Okuka, my mom, Gina Okuka, and the rest of my family, we thank you from the bottom of our hearts, and promise to pay it forward. If this treatment works the evidence will be able to help thousands of others dealing with the same nightmare.
Stefan & Gina Okuka.
- Aleks Cvrkalj
- Goran Bratic
- Christopher Hobson
Organizer and beneficiary
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