National Kids Cancer Ride

NKCR 2019 – Day 17 – Lunenburg to Lower Sackville

It was a bit of a restless morning in the bunk… a case of the “I gotta pee but it’s to cold to traverse the jungle gym”, but I eventually succumbed.

Once awake I checked my email, and there was an update from a ‘Go Fund Me’ page update that I had contributed to… Back in June, I attended a fundraiser benefiting the “Ride with Rouge” team for the Tour for Kids Alberta Ride… we heard a passionate plea for help from Angela, on behalf of her daughter Carolyn who was diagnosed with a very rare, devastating and aggressive cancer called Adrenocortical Carcinoma (ACC)… Doctors in Canada do not have the expertise to handle this cancer, and only by raising $300,000 could they travel to the United States for the surgery required… they raised the money, and they flew down for the surgery.  At the beginning of our NKCR journey, the last update we heard is that the surgery went well and Carolyn was doing well… fast forward to today’s email update, and it was clear that the family’s biggest fears have been realized… I am including the update text, but there are two key phrases that need to be emphasized and be an affirmation as to “Why we Ride”…

“Unfortunately due to the rarity, not enough funding and focus has gone into this disease…. “

“We will be working toward getting approvals to get this drug in Canada for her.  We expect there will be hurdles to overcome with this, of the like we have never navigated before. “

Below is the full text:

“Carolyn’s Army.  We want to open this update with an expression of our deepest gratitude, it seems we are unable to say this enough.  Your love and support has carried us through this journey with hope and a vision of an end to this terrible struggle for our family.  There is no greater gift you could have given us!

We have been looking forward to life returning to normal with Carolyn having enjoyed her first two days back to school this week!  She has recovered so amazingly well from surgery and is back on her feet ready to tackle the world!

We are saddened beyond words to report that this weeks scans showed her cancer has returned with multiple lesions in her liver and one in her lung.  Our hearts are in our throats at the realization of what this means.  We are shocked and crushed, and are now being thrown back into a fight for Carolyn’s life with a vengeance. 

We are taking quick action to work with ACC experts to determine the best approach to fight for Carolyn’s future.  Unfortunately due to the rarity, not enough funding and focus has gone into this disease noted by our oncologist at the Mayo Clinic “adrenal cortical carcinoma is perhaps the most relentlessly aggressive of most any solid tumor, and is accordingly in greatest need further therapeutic options and better outcomes.” 

Carolyn has agreed to start another type of intravenous chemo next week with intended hope of a positive response while we work toward getting her on a different drug that has shown some promise.  The Mayo Clinic is presenting at an ACC conference in France next week the outcomes of a drug they have found to be “the only later line therapy which has been distinguished as promising”

We will be working toward getting approvals to get this drug in Canada for her.  We expect there will be hurdles to overcome with this, of the like we have never navigated before.  We need to wait for the oral chemo to exit her body before she is a candidate which could be several months.  Alongside of this, the Mayo Clinic will be sending her tumor to trusted partners for sequencing in hopes of determining if there are other targeted therapies available such as immunotherapy. 

We are committed to fighting for Carolyn and all those that follow her.  This road will not be easy.  Carolyn will have to continue to endure chemo and all that comes with it, Tim will be needing to stay home to care for her, I will have to continue to work, and Tyson will have to deal with the difficulties of a sibling with cancer.

This is the hardest update to deliver yet.  We are strapping on our boxing gloves and will try to find the right balance of fighting and living everyday to the fullest.  We know that every one of you are here to support us, we appreciate your thoughts and prayers. 

Love the Kelter family xo”

We headed off for breakfast, and this being the second last day of the ride you could tell the mood had shifted… the end of the journey was upon us… people started talking about highlights of the journey which is all fine, but we were not done yet and we had to keep it together… there is still two full days of riding, and we need our head in the game.

Fiona Steele, bereaved mother of son Simon and a multiple volunteer and National Rider performed the dedication… At the Terry Fox memorial I witnessed the pain and grief she released for the loss of her son and recently deceased husband, both from cancer.  Today’s dedication wasn’t emotional as you would expect , but a point blank reminder of how underfunded Children’s Cancer Research is… it was a touching tribute to Simon and how brave he was.

We were also visited by a local survivor named Hailey and her mother… Hailey has channeled her experience and survival into advocacy, and living life to the fullest.

We set out for our ride, and the glow of the sun quickly overtook the cold to create a radiance of heat… amazing how we had to travel across the country to get the weather we started with back in White Rock, BC!

We arrived at our first rest stop and I was greeted by my wife and daughter!  I’ll admit I was partially surprised as I knew they arrived this morning but figured there was a 50/50 chance they might do something like this (they are both brats after all 🙂 ).  I’m glad they did as we have been to apart for far too long.

Once again we were spoiled with RCMP escorts, amazing sunshine, and the spectacular costal views.  It was a glorious day and a glorious ride!

The evening was spent doing packing “pre-work” and dinner… excitement was building for tomorrow’s ride and people are itching to “really let loose”.

We had a guest visitor… Little three year old Jude and his parents came by to say hello… Unfortunately I don’t know Jude’s diagnosis but but he looks great.  “Uncle Gerry” sat him on his big motorcycle and let him rev the engine, and then took him out for a spin… I’m not sure who was happier but it was a heartwarming site to behold.

Tonight is the last night in our bunks, and tomorrow is our last day of riding.  Again I just can’t explain where the time has gone, and I can’t believe it will all be over so soon.

Thanks for reading and your support!

Omar