Walking With Your Kids Through GriefFeb 26, 2021 09:36PM ● By The Hood Magazine
Dear Libby, Ellis, and Thomas,
When your mom Aarika agreed to share her story with us at Hood Magazine, we were so honored.
We knew that your mom had cancer. We also knew that you had just moved back to Sioux Falls so you could be closer to family and friends when she feels sick.
What we didn’t know was how your mom would change our lives and make us all better parents just by being who she is.
This post is going to talk a lot about cancer because it’s colon cancer awareness month, and your mom is helping us get the word out about this disease to help as many people as possible.
But we wanted you to know something important first, in case you ever come across this article someday:
Your mom loves you so much, and she is the bravest person we have met for a million reasons.
Thank you for borrowing her to us for a few hours so we could share her beauty and strength with others, too.
The Hood Team
Walking With Your Kids Through Grief
Sioux Falls mom Aarika Maisak talks about her journey through colon cancer and parenting during the tough stuff.
“As much as it destroys me to talk about dying and not being here with them, my goal is to normalize this experience as much as possible for my kids,” said Aarika Maisak.
Aarika is a mom to three kids (ages 6, 5, and 2), a wife, and a professional mental health therapist. She is also a road biker, rock climber, and runner if we’re tossing in a few of her many remarkable hats.
In 2018, just two weeks after delivering her youngest child, Aarika was diagnosed with stage IV colon cancer. Hearing this news as a healthy, active 34-year-old woman with no family history of the disease could not have been more unexpected or devastating.
“I was one of the healthier people in my circle,” Aarika said. “I was very active, ate a healthy diet, and I had no genetic history of colon cancer.”
Looking back, the first physical signs that something was off started showing up right around the same time she found out she was expecting her son Thomas. She recalled having some light nausea and a slight change in her stools, but nothing overly noticeable or alarming.
“I thought maybe I’ll just eat more fiber, more fruits and veggies,” she said.
To be cautious, she asked her general practitioner to run some labs. Everything came back normal, and she was told not to worry.
But as her pregnancy progressed, Aarika knew something just wasn’t right.
“I felt sick and nauseous for most of that pregnancy, and I wasn’t ever sick with my other two pregnancies, so that was really different for me,” she explained.
The turning point came when she was about seven months pregnant. While on a work trip to Washington, D.C., Aarika was overcome by vomiting and illness and had to be admitted to the hospital. Shortly after, she started experiencing a shooting pain in her right side. She later found out it was caused by tumors on her liver.
Still, Aarika said it was hard to get her doctors to take her seriously and check into things further. Instead of giving up, she trusted her instincts and self-referred her care to a gastroenterologist. They ran some tests, changed her diet, and put her on a medication for Crohn’s disease. But the pain in her side kept getting worse.
“It wasn’t like a dull ache; this was a bone-chilling pain. I would have to go and lay down in my office and get it under control because when it came up I couldn’t even talk,” she said.
Next, her gastroenterologist checked her tumor markers. They came back elevated, and a colonoscopy was scheduled for two weeks post-birth. She ended up being induced at 38 weeks pregnant because of the pain but safely delivered Thomas, a healthy baby boy.
Aarika remembers bringing her new baby with her to her colonoscopy appointment. The results weren’t what they were hoping for. “They said we did find something, and we’re 99.9% sure it is cancer,” she said. A CT scan later that same day confirmed it was stage IV colon cancer.
The following weeks were a whirlwind of chemotherapy, being awake at night with a newborn, pumping around the clock to build up a supply for when chemo prevented her from nursing, and preparing for major surgery at the Mayo Clinic.
There is grief in parenting during a terminal disease, but Aarika also acknowledged the grief in losing her career because of cancer. Before her diagnosis, she supported her family by working as the clinical director for a treatment program for teenage girls in Salt Lake City, UT.
“It felt like my world was shaken up and turned upside down,” she said. “I had a job I loved and I had to leave that immediately, I didn’t get to go back after maternity leave. I never imagined my career would be over, just like that. Not being able to work was a huge loss for me.”
By the time they had found Aarika’s cancer, she had tumors in her colon, liver, and stomach area. After eight rounds of chemo, the tumors shrank enough so that she could have a tumor debulking surgery at Mayo. The 10-hour procedure required months of recovery time, but it successfully removed much of her cancer.
“The surgery saved my life. So did my gastroenterologist’s quick action of getting me in for my scope and starting me on chemo right away. I would not be here had it not been for that,” Aarika explained.
Since that surgery two years ago, Aarika has undergone more chemo and additional surgeries to remove metastases that have shown up on her lungs. In February, she was waiting to see if the chemotherapy she was on would destroy more of these lung tumors enough so that she could have another surgery to remove them.
“Will the chemo work? Will I have options after this? That’s what we don’t know,” she said.
This past summer, Aarika’s family moved from Salt Lake City back to her home state of South Dakota so family and friends can be here for her kids when she can’t. Aarika said she wants to make sure that her kids feel safe and held, like someone is always there for them, during this experience.
“My kids know I’m sick, they know what’s happening to me and that I am going to die,” she explained. “The greatest gift I can give them is knowledge, resources, comfort, and education so that they can process this and heal.”
“It is so important to give kids a place to talk about their feelings and a place where they can feel understood, no matter what,” she continued. “My kids will say things like, ‘It’s not fair that I don’t have a healthy mommy,’ and I will tell them, ‘Totally, honey. It’s not fair to you. Of course you are so sad, this is total bologna.’ Or we’ll talk about me potentially going bald from chemo, and how that can be embarrassing for them, and how to talk to their friends about it. That stuff can be hard for me to hear. But it’s totally normal and it’s a part of their grief, and they need a place to express everything they’re going through.”
For a busy, working mom, asking for help and taking care of herself during her cancer has been another challenge to overcome. “I’m getting better at accessing the community for help and letting go of control so my husband, family, and friends can handle things with the kids when I’m feeling sick,” Aarika said. She also sees her own mental health therapist twice a week. “If you are going through something like this, make sure you and your kids’ mental health are attended to.”
Right now, Aarika continues going through chemo to shrink the tumors in her lungs. She also self-researched a clinical trial drug that she is on to help improve the chemo’s efficacy.
“I have a few treatment options left, but not a ton. My goal is to just stay alive as long as possible for my kids. To be as healthy as possible for them, and to enjoy the quality of life with them that I have left,” Aarika said.
Colon Cancer Awareness
Gone are the days when colon cancer only affected people in their 60s or 70s. Early onset of the disease is steadily on the rise.
Case in point: one in five colorectal cancer patients are between 20 and 54 years old, and it is the third leading cause of cancer death in young adults (www.coloncancercoalition.org). Recently, the recommended age for getting your first colonoscopy screening dropped from 50 to 45 or earlier, no matter if you have any family history of the disease or not.
This information isn’t meant to scare you. It’s meant to educate people on the early symptoms, so they don’t brush them off as no big deal because they’re young and healthy. Early detection is what will save your life. By the time most young people discover they have colon cancer, it’s already terminal.
If you have any changes to your stool, blood in your stool, cramping, stomach aches, fatigue, family history, or other concerns, you can self-refer to a gastroenterologist who can help. There are also at-home colon cancer screenings available to you, such as Cologuard.
Not all patients with colon cancer have a genetic link to it, including Aarika. So you can’t assume that because you have no known family history, you’re automatically in the clear.
Aarika also urges people to be strong advocates for their health and not to quit until you find providers who will go to bat for you. She works with not one but three oncologists to get second and third opinions on every decision. Had she not trusted herself that something was wrong, even when her general practitioners said things were fine, and self-referred to a gastroenterologist, she might not be here today. She also researches her own treatment plans, trial drug options, and providers.
“From my experience, when people who are ill participate in their treatment and are engaged in the decision-making of it, more options become available to them,” she said.
If you or anyone you know has received a colon cancer diagnosis, Aarika also recommends the Facebook community called Colontown. The group has scientists and oncologists who answer questions and just about any information you can think of about the disease.
“It is a critical resource to have if you have colon cancer. I can’t recommend this group enough to anybody dealing with this,” she said.