Spotlight on Megan and Dwight Gardiner

Spotlight on Megan and Dwight Gardiner:

Supporting our loved ones

and others is key

January 2024

Family photo from year of diagnosis 2018

with our 4 daughters Amanda, Charlotte, Emily

and Rachael with Joshua, Kenzie, James, Alex,

granddaughter Lana, and the dog is Gussy,

in Chelton, PE

Hello. My name is Megan, and I am Dwight’s wife and caregiver.

Dwight was diagnosed with multiple myeloma (MM) in February 2018. Confusion and feelings of devastation followed as it was found that he had high risk smoldering myeloma.

Then, four months later, Dwight was also diagnosed with AL amyloidosis in his kidneys and heart.

He was 53 years old.

And so our nightmare began. My thoughts were...

“This can’t be happening. My father just died from the ravages of MM

in 2014. Now I have to watch my husband die from this same disease.”. 

We both immediately felt the huge loss to the life we had hoped for.

Dwight and his brother ran the family potato farm with a passion for farming in his blood. Now he was hit by 2 diseases literally in his blood. 

Dwight had unbelievable fatigue with extreme shortness of breath. Walking or getting in and out of a tractor, along with long hours, was very hard to accomplish. He already had a heavy history of heart problems and a previous surgery for an aortic aneurysm and ventricular septal defect.

Initially, we thought maybe his leaking valve could be the issue but his surgeon and cardiologist didn’t agree with the results from his scans, MRI and echo cardiograms.

Dwight’s family physician found elevated M protein in his urine and bloodwork so sent him to a nephrologist. The nephrologist ordered a bone marrow biopsy and aspiration which determined Dwight’s myeloma diagnosis in February 2018.

With symptoms worsening to extreme shortness of breath and more frequent bathroom trips, a kidney biopsy and later a cardiac biopsy confirmed the AL amyloidosis in June 2018.

Dwight’s treatment with CyBorD (cyclophosphamide, bortezomib and dexamethasone) was started in June 2018, the same day we received his positive AL amyloidosis diagnosis, and continued for 9 months.

His worst side effects were extreme edema [swelling] in his feet, legs and abdomen, heart palpitations, QT prolongation [irregular heart rhythm], worsening shortness of breath, and neuropathy in his feet. Interesting fact: Dwight no longer liked the taste of potatoes!! 

Dex was keeping us up at all odd hours of the night. Dwight would come wake me up at like 3:00am to what he had found researching these awful diseases. Stem cell transplant was not an option due to his heart history.

Dwight could no longer physically do the work on his farm and so we made the hard decision to sell the farm and purchase our new retirement home in Chelton, PEI, by the sea!! Two years later I retired from being a Licensed Practical Nurse and from my foot care business. By now this was taking a toll on my health, and I needed to be there for Dwight and his many appointments. Atrial fibrillation, fainting in our garage and suffering a bad concussion added to his issues.

Following treatment, Dwight remained on maintenance chemo of bortezomib every 3 weeks until he relapsed. He then started the Quadruplet treatment of daratumumab and again CyBorD, taking 18 out of 24 of these treatments until he could no longer physically or mentally handle any more. 

Luckily Dwight’s numbers came down to undetectable traces of disease!! This addition of daratumumab was a game changer.

Now, Dwight remains on daratumumab every 4 weeks. With his amyloidosis, he will have to remain on lifelong treatment, or the numbers will just come back up. To date, Dwight has had 5 hematologists, and treatments in Moncton (NB), Charlottetown (PEI), and now Summerside (PEI) which is closest to our home. As well, he now has a cardiologist and nephrologist on the Island (PEI).  

Myeloma Canada became our blessing when my twin sister Bethany Reeves and I attended a myeloma education day in Charlottetown PEI.

Dwight, me (middle), Bethany (twin sister) in 2020 with Memory photos of Dwight's Aunt Lorna and my Dad, both lost to MM

Dwight and Megan with friends Susan and Brent McLean on our first Island March 2020 Summerside PE

We both decided we would become Support Group Leaders for Prince Edward Island to honor our father, Dwight’s aunt who had also passed away from MM in 2020, and to offer support to Dwight and others.

We have held yearly [Multiple Myeloma] Marches, attended a few of Myeloma Canada’s Support Group Leaders’ Summits, and hold support group meetings in both Summerside and Charlottetown, and even coffee dates!

Me and Dwight, Multiple Myeloma March 2021, Summerside, PE

For the last two winters, Bethany has been travelling so Dwight has stepped in to help me with advocacy work and attends every meeting possible.

In 2022, he and I met with many MLA’s and the Minister of Health to advocate for the Island’s funding of daratumumab. Myeloma Canada helps so much with their online as well as physical support. Jessy Ranger [Myeloma Canada’s Director of Patient Programs, Health Policy & Advocacy] also attended many Zooms with officials, and even Martine Elias [Myeloma Canada’s Executive Director] joined us when we met with the Minister of Health via Zoom!

And yes, the funding for daratumumab

was finally approved!!

We now have amyloidosis included in our Support Groups and in our MM Awareness Day. As well, I have returned to volunteer work with Hospice PEI, visiting clients near end of life or with life limiting illness. This work helps my volunteer work with Myeloma Canada.

I have even had a hospital chaplain speak on one of our MM Zooms on grief work to support us when losing our MM members and loved ones. I am planning to soon hold a ‘Death Café’ for our MM group! I attended one with Hospice and feel it is an interesting and light way to discuss our own deaths.

Dwight and I are also training our golden retriever Gemma as a therapy dog for our MM members as well as for Hospice. She already is our therapy dog!!

Me and Amanda at the Summit, Niagara Falls 2023

We couldn’t have done all this without the support from our families, friends and our 4 daughters assisting with the Marches.

As well, when Dwight was unable to attend the last Support Group Leaders’ Summit with me, our daughter Amanda attended in his place. 

Dwight and I enjoy all our family time as well as camping and fishing for a big Musky! We leave our camper and boat in a campground in the beautiful Nackawic, NB, and make trips over to NB from PEI from May until October. Dwight has also become quite a photographer!!  

Dwight and his 45 inch Musky catch

in Nackawic, NB

I finally caught my first Musky!

2023 Nackawic,NB

Me and Gemma, and yes we fish Musky in October!!

Saint John River, NB

Dwight and a Musky catch. This is not his biggest.

To date his biggest is 47 inches. Catch and release only for us 2020 in Nackawic, NB

Last summer we were so grateful that Dwight is still with us

to see two of our daughters be married, and for him to be able to take part in walking them down the aisle.

We also have one granddaughter, and a grandson on the way!!

Sweet milestones!!

Our daughter Charlotte and Kenzie's wedding day

with 3 more daughters Amanda, Emily and Rachael, Dwight, me, and granddaughter Lana

June 2023 in Windsor NS

Me and Dwight with daughter Rachael

on her wedding day in September 2023

in Summerside PE

Dwight remains physically limited due to his heart issues

but has chosen to be a very positive person and enjoys finding other people

like him so they can share their stories. 

We will continue to advocate for ourselves and others

living with these two diseases.

Shout-out to all of Myeloma Canada for all your support and the information made available to us.

Myeloma Canada is a reliable source for information, and we all need to continue our work in getting their educative resources into the doctor’s hands so people with myeloma don’t go down the rabbit hole of reading Google!! 

Special thanks to Michelle Oana [Myeloma Canada’s Director of Development and Community Relations] for travelling to the Island to help with our Marches and Information Days, and to Yolande Paine who has become a beautiful friend, and positive MM influence. Because of Yolande, my next goal is to become a MM peer support volunteer just like her.

Me (left) with Michelle Oana of Myeloma Canada at Island March #2 in 2021 Summerside PE

Friend Yolande Paine and me, Niagara Falls - Myeloma Canada Support Group Leaders' Summit 2023

Best to all,

Megan

Editor’s note:

For more information on the PEI support group, click here.

To find a local support group in your area, click here, or for information on how to start one, contact Michelle Oana, Myeloma Canada’s Director of Development and Community Relations at moana@myeloma.ca.

We hope you enjoy meeting our Spotlight Stars and your fellow Myeloma Canada community members. The Spotlight section of Myeloma Matters features stories and reflections supplied by members of our community - those living with myeloma, caregivers, healthcare professional - in their words. The views expressed and shared are those of that individual. We recognize that everyone’s journey and experience with myeloma is different.

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