InFocus Magazine — Surviving the Storm
Sep/Oct ‘16
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Surviving the Storm
Sunday Dennis’ positive outlook—and incredible support team—drives her ongoing battle with brain cancer
By Debbie Bowman • September & October 2016
nurse ” says Sunday Dennis, sovaldi at home with her husband Jason McMahon and eight-year-old son Ishan. “But we’ve been a strong team. We’ve had over 100 doctor appointments but we’ve been together for all of them.We’ve been a tight unit through it all.” Photo by Boomer Jerritt” width=”602″ height=”401″ /> “It will be two years in December since it all began,” says Sunday Dennis, at home with her husband Jason McMahon and eight-year-old son Ishan. “But we’ve been a strong team. We’ve had over 100 doctor appointments but we’ve been together for all of them. We’ve been a tight unit through it all.” Photo by Boomer Jerritt
Two years ago, just before the Christmas of 2014, life for Sunday Dennis and her family took an unexpected turn. Like most families during the busy holiday season, life was hectic. Dennis, 47, and her husband Jason McMahon were working at their small business, Sock Soiree, located in Downtown Courtenay.
“The store was busy and we were working long hours. I began to feel really tired but I just attributed it to working too hard,” recalls Dennis. “Then I started to have a headache. It was different than most and hard to ignore. It would pulse when I stood up and continued to get worse. I began to feel nauseous too. I thought maybe I had a kidney infection or something.”
At a Christmas party things took a turn for the worse. Dennis had to leave the party early and the next day she went to a medical clinic. Although Dennis admits to playing down her symptoms, something about the situation must have alerted the doctor, as he sent in a rush request for an MRI. Things happened quickly from then on, as the next day the MRI was performed and the following day Dennis was called back to discuss the results.
“The doctor—a new one I’d never met, came in and passed me some papers she’d printed off the internet, telling me that the papers would explain what I have,” Dennis recalls. The doctor told her she had brain cancer. Specifically, Dennis had glioblastoma multiform, the most lethal form of primary brain cancer. “She told me I should go home and get my affairs in order.”
It was a complete shock for Dennis and her husband when they received the news. “Jason immediately started to cry. I just remember feeling my body turn to sand and flowing into a pile on the floor,” Dennis says. “It was entirely unexpected. There is no cancer in my family. I’d been super healthy all my life. Cancer wasn’t on my radar. I’d never thought of it.”
McMahon adds: “It was such a shock to both of us. Up to that point she’d been the healthiest person I’d ever known.”
McMahon recalls their next steps: “We immediately travelled to Victoria to see a neurosurgeon there. We also contacted a friend of ours named Stephen Western. A few years ago Stephen’s good friend was diagnosed with brain cancer and as a result Stephen became somewhat of a brain cancer expert. You see, when you have brain cancer there is no time… no time for research, etc. You pretty much have surgery or you die. Stephen knew this so he did the research on behalf of his friend. He took it on for her, knowing that she didn’t have the time to do it for herself. Since then he has become a patient advocate and a brain tumor researcher. We called Stephen to learn about what options we had.”
McMahon and Dennis learned of a clinical trial being conducted at UCLA, and after talking to the neurosurgeon in Victoria, Dennis and McMahon realized that the clinical trial was what they needed to aim for.
“Here in Canada when you have this form of brain cancer you have surgery, chemo and radiation, followed by more chemo,” McMahon explains. “And then you wait for the cancer to come back.”
The survival rate using conventional treatment is around 15 months. Less than three per cent of glioblastoma patients who receive standard care survive five years. However, some of those in the clinical trials had over a 10 year survival rate.
Unfortunately, since it was a clinical trial being conducted outside the country, Canada’s health system would not pay for the treatment. “We had to come up with the money out of pocket,” McMahon says. “I asked the doctor what he thought the cost would be and he told me it would be somewhere in the ballpark of a quarter of a million dollars. Interestingly, I told that doctor more confidently than I’d ever said anything in my life… I told him we were gonna get that money.
“I immediately went back to our hotel room, wrote a letter and blasted it out to the virtual world,” McMahon continues. “All this happened on Friday and I was told we had until Monday morning to come up with most of the money. On Saturday a group of women from the Comox Valley got back to me and said they wanted to help fundraise with a YouCaring crowdfunding page. By Sunday night we had 89,000 people following the story and we’d raised more than $130,000. We were able to go in on Monday morning and tell the doctor what we’d done. I said to him, ‘I told you we’d get the money. We’re going!”
Almost two years later, McMahon and Dennis are still in awe of what happened that weekend. “The story of what we were going through—it took on a magical life of its own. It became an inspiration for people. I think it resonated on a spiritual as well as an interpersonal level. When that happens the layers come off and so much love is exposed. That was captured in the story and it really affected people in a positive way.”
Sunday and Jason. Photo by Boomer Jerritt
In the end, the YouCaring fundraiser raised just over $250,000 for Dennis’ medical expenses.
While this was going on, things were still moving incredibly quickly for McMahon and Dennis—it had been only a few days since Dennis’ initial diagnosis. The family wasn’t even able to return to the Comox Valley to retrieve what they would need for the trip to California. “We had to go a store to purchase clean underwear and such,” says McMahon with a chuckle. However, because of the generosity of the many people following their story, the family was heading to Los Angeles to begin the process of getting Dennis into the clinical trial.
The clinical trial they were excited about is called DCVax. It’s a novel approach to battling cancer, as in addition to killing the cancer cells with chemotherapy drugs and radiation, the trial also uses the patient’s own immune system to attack and kill the cancer cells. DCVax stands for dendritic cell vaccine therapy. Dendritic cells are the master cells of the immune system. During the trial, scientists take cells from the patient’s tumor as well as cells from the patient’s immune system. The immune cells are then prepared outside the body by putting them in direct contact with the brain cancer proteins. These specially trained cells are then injected back into the patient, where they travel to the lymph nodes to inform the immune system of the invading cancer cells. This creates killer T-cells that travel through the body, seeking out corresponding cancer cells. When these T-cells find more cancer, they destroy the cells before they can metastasize.
The clinical trial is headed by Dr. Linda Liau, one of the top one per cent of neurosurgeons in the world. Dr. Liau is also the neurosurgeon who performed brain surgery on Dennis. During the successful procedure, the surgeon removed 100 per cent of Dennis’ the 64-gram tumor.
After the surgery, Dennis had to endure seven weeks of combined daily chemotherapy and radiation, followed by another six months of chemotherapy alone. After that they commenced the DCVax administration schedule where Dennis is given a personalized DCVax injection every three months. “We are still in the early stages of the treatment. Though we’ve finished the first year of the DCVax it’s a three year trial, so we still have a ways to go,” McMahon says.
So far Dennis is doing well, though she is not yet out of the woods. In fact, it’s a day by day struggle. “When you battle cancer it’s a daily fight. It’s a daily challenge to just get out of bed and feel good,” Dennis says. “Actually any person with a chronic illness sees these daily challenges. And generally speaking, a lot of us don’t have that awareness. Imagine how you felt during the worst flu you’ve ever had. The difference is you knew it would eventually go away. But with chronic illness, it’s never-ending. That’s hard to live with.”
Dennis is battling with other challenges that are a result of her brain cancer. “My short term memory is awful so we have to learn how to live with that. In addition, I’ve just had two grand mal seizures which I suspect are due to injury from the surgery, radiation and chemo,” Dennis says. As a result, Dennis has to have someone nearby to watch her 24 hours a day, seven days a week. “We call it Sunday sitting,” Dennis adds with a smile.
Although the cancer has created immense challenges for Dennis and her family they have remained a strong family unit through it all. “It will be two years in December since it all began,” she says. “But we’ve been a strong team. We’ve had over 100 doctor appointments but we’ve been together for all of them.”
The couple’s eight-year-old son, Ishan, has insisted on being alongside his parents at each and every appointment. “We’ve been a tight unit through it all.”
Dennis talks about how the experience of having cancer has changed her. “Having an experience like this will change a person on a cellular level. It takes you to the really deep levels you never knew existed. You quickly learn what’s most important. I realized that love is what really matters.”
McMahon agrees. “This experience has been that of a double edged sword,” he says. “The sharp side… it cuts deep and creates a lot of pain. However, there is so much love and beauty and gratefulness and healing—that’s the other side of the sword.
“Going through this experience has changed how I see things,” he adds. “This society that we’ve created… it doesn’t make sense to me anymore. I mean, the busier you are the more successful you are, right? It’s a very money-driven culture. But isn’t this the prime time of our lives? It seems strange that we work so hard during our prime so we can retire when we are older… but many of us are never allowed to even enjoy our retirement. It’s bizarre to me, but it’s what many of us see as normal. That’s a hard pill to swallow. I’m back to work now and I have to be away from my family for 60 hours a week. But it’s painful to be away from them. So we are working toward starting a home-based business because I need to be home with my family.”
“I’m learning to be gentle with myself. I see my scar, my shaved head… I see pictures of how I looked after the surgery, and I realize I’m proud of what I’ve survived,” says Sunday Dennis, above after her brain surgery two years ago.
McMahon also notes that it’s been extremely difficult for Dennis to be living with cancer as a mother. “That’s been a real challenge, because she’s not who she was before it all happened. Before cancer, she was so active—full of vitality and creativity. Now if she has enough energy to get through the day she’s happy.”
Dennis agrees: “Yes, one of the most challenging aspects of this is being a mom while going through this. I’ve always been so involved and energetic—now I struggle to keep alert.”
However, Dennis also says she is coming to terms with her new reality. “I’m learning to be gentle with myself. I see my scar, my shaved head… I see pictures of how I looked after the surgery, and I realize I’m proud of what I’ve survived.”
Adds McMahon: “You should be proud. I’m proud of you every day.”
Although Dennis and her family are still living with her brain cancer, they are living for the future. “We live like we are going to continue to live,” she says. “We buy trees for our garden and plan on seeing their growth together. I’m also thinking of applying for a Canada Council Grant to create a CD with songs about cancer.”
“We don’t know if we have three months, three years, or 30 years,” McMahon adds. “We choose to focus on the long term.”
Even though the past two years has been an incredibly difficult time for Dennis and her family, they exude a sense of peace, love and gratitude. “We are so thankful for the support we’ve received from our family members, our friends and even complete strangers,” Dennis says.
“There has been so much love, we could feel it coming to us in waves at times. Throughout this process we have felt protected and guided, like golden pathways have been opened up for us. We are so very grateful.”
To learn more about the DCVax clinical trial visit www.clinicaltrials.gov/ct2/show/NCT00045968
For more information about Stephen Western’s extensive brain cancer research and survival visit www.astrocytomaoptions.com
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3 Responses to Surviving the Storm
By mike washington • November 4, 2016
Hi Sunday and family,
I remember Sunday from the two years I lived on Quadra Island in the 1980’s and you were the last person I would have suspected to be stricken like this. Such a great article on your brave and enlightening story. I will be contributing to this cause and thinking the warmest thoughts and wishes for you and your family.
Mike Washington
By anna parkes • November 5, 2016
Hello Sunday and fam!
Our family is so happy you are doing better. When Hoatie sent out a call for help last year, we were glad to be able to give something to get you into that clinical trial. Really happy you are doing better. It warms my heart to read that your son and husband was there with you every step of the way. I had a type of bone cancer when I was 7, went through 2 plus years of chemo and radiation, i know it’s hard beyond comprehension. Still to this day I feel the affects by what happened to me 38 years ago. I know you will be fine Sunday-after much recovery. We are sending love, peace and healing energy to you and yours-surround yourself in the light of love, it’s all around you Sunday. Much rest, and best wishes to you. Anna, Avery and Anthony.
By Aurelia Norma “Rae” Grubb • November 7, 2016
Hello Sunday, sending love and healing to you and your loved ones.
You may have heard about me, but we have never met, in person. I am Aurelia Norma “Rae” Grubb.My husband David, and my Stepson, Devon, know you, and Maureen Allen, from being neighbours on Quadra Island.
I have so much love and respect for you, and your family, what you have already gone through, and the challenges you still face, while in Clinical Medical Trial, in the USA, that you are participating in.
I was diagnosed with Waldenstrom’s Macroglobulinemia a very rare form of Non Hodgkin Lymphoma. I have bone, blood and plasma cancers, and an Auto Immune Disorder called Sjogrens, Syndrome. I do not make enough saliva, tears, or body fluids, and am extremely cold intolerant, and struggle with infections, bacterial and viral on a regular basis.
My friend has recently started a YouCaring.com funding page for me, as well in the last months.
I too am diagnosed Stage 4 Terminal Cancers, since November 2015. I too had to get my affairs in order as I knew I must. David is shattered, overwhelmed and worries as we can not possibly fund the U.S. medical expenses, as I had to retire, and he is a pensioner, on a limited income. The Canada Government, gives me only a few hundred dollars a month, that doesn’t even begin to cover my prescriptions and medical needs, let alone Air travel, and accommodations to and from Boston USA.
The Palliative Care Benefits, DO NOT COVER cover most of my essential prescriptions in BC.
My Oncologist in Vernon, and I researched for a possible Front line Clinical Medical Trial. In early 2016. I found a first time ever,”Front-line” Clinical Medical Trial, for Waldenstrom’s Macroglobulinemia, at The Dana-Farber Cancer Institute, in Boston, Ma.U.S.A.
I was seen by Dr. Jorge Castillo, May 2016 and was vetted, and accepted into this new Front Line Medical Trial. I am one of only nine people in the world currently, who is in this trial. I have a specific genetic mutation, or deletion,in my genetics, that makes me perfect for a Lab Rat.
If it keeps on working so well in me ,and is a success, Ibrutinib, will be able to treat millions of people with a variety of cancers as never before.
This is My Legacy of Love to the World” As I am adopted, have no blood relatives, and I lost all four of my babies before birth. I am willing, and hopefully, financially able, to keep going in this Clinical Medical Trial until 2020
I and my husband, also love our little garden, looking forward to Spring 2017 to see them flower together.
The Trial drug I am “Testing” is called IBRUTINIB. I take 3 capsules a day. It is working very well in me. It gives me hope, but I must return again, and again, for testing, biopsies …..and to have the Ibrutinib drug replenished, and dispensed to me for the next 90 days.This is a four year Front line Clinical Medical Trial and ends in 2020.
My very small family, and friends have donated to support me, but, as you well know, the “Financial Mega Burden” is impossible for me alone. I have NO U.S. Health Care that pays for any of my life saving expenses.Without the kindness and generosity of many more donations, I can not proceed.
I am appealing for donations, as you have, through YouCaring.com.
I will NOT be able to stay in the Clinical Medical Trial, without the hundreds of thousands of dollars U.S. I need, as you did, to fund my four year participation in this Trial, with the new drug Ibrutinib.
This new drug, Ibrutinib,” Targets the signalling pathways of the cancer cells,and puts them into “Apoptosis” or “Cell- Death” This is “The Cutting Edge” of scientific medical research in cancers . Now using a patients own genetics and DNA to kill the cancers.
I have been told repeatedly I have an amazing attitude, and positive outlook, for my survival, going forward. I see you are that kind of person too! I know you are strong, and a fighter! Your story gives me so much encouragement. I thank you for that Sunday, from the bottom of my heart.
I hope we can connect, and be able to chat. You may contact me, I am on Facebook as Rae Grubb.
Many, many, blessings , prayers and good will, to you, and your loved ones always,
Aurelia Norma “Rae” Grubb nee Porter.
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