NKCR Blog - For Greta

How can the death of a young girl whom I have never met have such a profound impact on me? In October 2017, as I was preparing to leave home for another work week, I read a simple post from my friend and “wheel daughter” Taylor, and it moved me to tears. My wife asked me what was wrong, why I was sighing so deeply, and I couldn’t find words, could only hand her my phone and croak “read this” and walk away. Moments later, she hugged me, in tears herself. Why do I feel this way? The answer to this question lies in the journey itself that was the National Kids Cancer Ride. It has been difficult to collect my thoughts about this over the past week after the ride, but here goes:

I will admit, at first, the ride was about peronal accomplishment. Although I have cycled for years, I have never attempted something like this – riding my longest distances, day after day, let alone crossing the country doing so. However, as the ride started, with the first dedication in White Rock, that goal became farily meaningless, paling in comparison to what we were doing, and why we were doing it. We rode for so many kids. Kids who have earned their wings and passed away: Finn, Alexander, Cassy, Ty, Jessie, Naomi, Alex, Grant, Taissa, Katie, James, Sean, Simon, Briony, Michael, Becca, and Greta. We also rode for kids who have survived their cancers, including Tristan, Mason, Nicola, Daxton, Ollie, Chloe, Megan, Taylor and Kyle, and those still living their dash – the time between their birth and death with uncertain futures, like Inara. Along the way, a bunch of crazy, like minded people bonded and became respected friends and family, as dear to me as my own: The riders and volunteers that got all of us through the journey, whether it was laundry, mechanical and medical help, or just a hug when emotions overflowed and we so dearly needed it.

For me, the story of Greta is so integral to the journey and the cause that even though I never met her, her passing is what saddens me and inspires me to write this blog. Greta’s story is below:

Greta was a happy, healthy energetic baby. Then she started having some vague symptoms, unexplained fever, a little nausea, less stamina – nothing serious but worrisome enough to make visits to the doctor. After some investigation and nothing showing up Lindsey(Mom) knew something was wrong. Family doctor then sent her to Alberta Children’s Hospital. After various tests she went for an Ultrasound. That’s whenour world changed. They found a mass on her liver.

Just before she turned 2 years old, September 23, 2015 Greta was diagnosed with Hepatoblastoma. This is a rare liver cancer found in fewer than 1 in a million children.
Greta started her first chemo treatment on her second birthday. She had several more treatments preparing her for a liver resection. The surgery was a major event, even for the surgeon who performed it. This was followed by more chemo and another major surgery to investigate spots on her lung to make sure they were not cancerous – they were not.
She tolerated her treatment extremely well! Though she lost her hair and had to be isolated because of low immunity Greta remained a happy, exuberant child. At the end if March she was done her treatment and had “no evidence of disease”. Oncologists said recurrence was unlikely. We were overjoyed! We enjoyed the summer with Greta and her big brother Ben. Spending lots of time at the lake and watching her change from a baby to a little girl. 

Then, on a routine follow up doctor visit in August 2016, we had disturbing results from a blood test – it looked like the cancer was back. More tests and scans revealed that it was. The good news was that it had not metastasized. We started chemo again almost exactly a year after the first round and were told she would need a liver transplant. Her Oncology team started that process but received the unexpected and devastating news that the transplant board had rejected Greta for transplant. We have not given up on the liver transplant, with some options available to explore in Cincinnati.

Meanwhile, the treatment protocol Greta started on with her relapse wasn’t working. During the few weeks she was on that treatment, the cancer spread to her lungs. 2 tiny spots…. 

My dear friend and fellow rider Taylor carried a stuffed bear, Courage, on the journey across Canada. Many of us carried some memento along with us for various reasons, but Courage was special. Courage was to make the journey from Vancouver to Halifax, and back to Greta’s arms in Calgary. With a twist of fate, on Thursday Sept 14, the day we were to go into Thunder Bay and the Terry Fox memorial, we found out that Greta had been admitted to the pediatric hospice in Calgary as nothing more could be done for her. Courage was sent back to Calgary from Thunder Bay to be with Greta in her final days. We all took turns hugging Courage and adding our love, and he was boxed up to be sent on his way.

Here lies one of the amazing stories of our journey. When Taylor went to FedEx to send Courage back, they were closed. It looked like Courage would not make it to Calgary until Sunday, but a FedEx employee Dan, personally worked magic, arranging for Courage to fly on a third party flight (another courier) and got Courage to Greta’s arms on Friday morning. It is an amazing example of the community and support that we received all across the country on the ride.

On Sept 20, as we got up to begin our ride, Taylor noticed that Greta’s picture had fallen off the wall in her bunk. Shortly after, at our lunch stop, we learned that Greta had passed away. It was devastating news for all of us and left us in tears and leaning on each other for support.

Taylor’s words in a simple facebook post to the National Riders, brought all of this crashing back like the waves that break on the shores of both the Atlantic and the Pacific. And thus the emotions that make me feel so sad for a little girl I only knew from the stories on the ride:

“Shut up and dance” turn it on and have a little dance party! It was her fave

Today was Greta’s 4th birthday. I attended her service with 10 other moms of kids who have died from cancer. We sat with our party dresses and tiaras while her mummy and daddy spoke and had us laughing and crying at the same time.
I was fine until the last photo came up on the slideshow. It was this one (photo not provided at family request). I looked at the table of momentous and saw Courage sitting there with her blankies and I knew the impact that I had.

You all are my heroes. I don’t think you know the impact you have on these kids and families lives fully… to be at a funeral for a kid who will never turn 4 and have strangers come up to you THANKING me and all of you for what you have achieved? Telling me that our blogs gave them hope and a sense of belonging is a BIG deal.

I hate that we have another wrist band to add to our “whys”.

Yet in all of this, there is still hope. The treatments have improved and more and more children are being saved from their primary cancers, to go on and live productive lives. Along the way we heard the success stories, and heard from doctors about how the funds raised and research helps to create new treatments and “designer drugs” that can use genetic markers to attack and eradicate the cancers. Hope is good, but it seems for those of us who ride, it’s not enough, until we can say that all childhood cancer has been eradicated. We may have an 80% success rate, but for the kids with cancer it’s either all or nothing. Live or Die.

So how can we help? In a word, donate. It doesn’t have to be financial, although we will continue our fundraising through sites like my own fundraising site. You can also donate your time through volunteering, and for those of you riders, I encourage you to look into joining the ride next year or in subsequent years. It is an experience that you will never forget, and like me, you will develop new bonds of frendship and family that will last you a lifetime.

As for me, this is the beginning of my journey. It has moved me in ways I cannot yet explain, and will continue to do so for the rest of my life. I will be, god willing, back to ride again, to journey across the country spreading awareness, and raising funds to fight this horrible disease.

Until then, thank you for listening, supporting and donating.

Rich Meesters