Brittany Magnus
Mom of one child with Leukemia and another with Crohn’s disease
Hi Brittany! Tell us, what’s your story?
I’m Brittany, a 30-something wife and boy mom living in the suburbs of Chicago. I work as a senior paralegal at a tax resolution firm. I have been there since 2009 and my coworkers feel like family to me. I work 4 days a week and FILL my days off with family time. I’m always finding local events and trying to make life really special for my boys. Think making balloon garland for Valentines day and decorating for Christmas way before Thanksgiving. I like watching reality tv, purging and organizing my home, adopting way too many animals, wearing comfy lounge clothes and occasionally getting myself all dolled up for a night out. Of course, this was all pre-diagnosis. Life is much different now.
You shared with me that you have two children - one diagnosed with cancer and the other with Crohn's disease. What was life like before these diagnoses?
Before my children were diagnosed, life was easy. I didn’t see it back then, but I do now. The boys spent their days jumping on the trampoline in the basement and screaming along to silly songs (check out “It’s raining tacos”) with Alexa. My husband and I worked from home, and we were always together. We had lots of movie nights and outdoor activities due to Covid. We were a pretty normal family.
And then your life radically shifted. Can you share about their diagnoses?
Cole presented with a swollen lymph node on one side of his neck. I have always been on top of it when it came to my kids being sick. I’m the first one to rush to the doctor. When I brought Cole in, we were told that the lymph node was swollen because he must have had a virus. However, I knew he had not been sick recently. We tried antibiotics and it originally shrunk some but persisted. I was very worried. We had blood work done, a chest x-ray, ultrasound, CT scan with contrast, and a round of steroids. Unfortunately, 8 weeks from first noticing the lymph node, it was still there. We had a biopsy done on April 5th, 2021, and we received the call that evening telling us Cole had cancer. I originally missed the call and when I called the number back it was “the hematology and oncology department.” My stomach dropped and I knew it was cancer.
A month after Cole was diagnosed, Hudson was complaining of knee pain. I know this can be a sign of leukemia, so I immediately wanted blood work done. I was very triggered by this and it made a hard time, even harder. Some inflammation markers came back high, and we started investigating what could have been the cause. We ruled out lyme disease, rheumatoid arthritis, celiac, etc. The only thing I could think of was that he had pretty frequent stomach aches. He was always very skinny and didn’t really care about food like his brother. He would need to take a break to rest his stomach on the couch after eating dinner. We did some testing and met with a GI doctor who performed a colonoscopy. Although, he told me based on Hudson’s levels, he did not think it was Crohn’s disease. I remember him coming into the room after the procedure and showing me the photos of his intestines. They were super inflamed, and a biopsy later confirmed that it was in fact Crohn’s disease. Pediatric Crohn’s is not very common. We later found out that he carries 2 genes that make his chances of developing Crohn’s much higher.
“I originally missed the call and when I called the number back it was “the hematology and oncology department.” My stomach dropped and I knew it was cancer.”
What has it been like shifting from the role of mom to mom and caregiver for two little ones?
Since the boys were diagnosed I have taken time off of work and I hope to return this summer. My current full-time responsibility is staying on top of what the boys need. As a mom, we’re always taking care of our children; but, it’s a larger responsibility now. There are multiple medications that must be given at the same time daily, hospital visits, hospital inpatient stays, learning how to administer injections, appointments, the list goes on. My calendar that was once filled with fun plans is instead filled with times for medications to be given and appointments.
Any words of wisdom you would give to other parents who are in a similar situation, dealing with a life altering diagnosis of a child?
Breathe. Let your feelings out. Connect with other parents who are in a similar situation. Get a really good therapist.
How has the pandemic affected your life as a mom to two little ones in and out of treatment?
We were already pretty isolated due to the pandemic when the boys were diagnosed. Since they were both not vaccinated, we stuck to home often. Being diagnosed during a pandemic made it harder and easier at the same time. We were already used to masking and not seeing people inside unmasked, so that wasn’t a huge change for us. However, it’s hard to go through such a devastating time without the physical support of friends and family. Other than my mom, no one was isolated enough to see the boys unmasked.
What has been a specific low point or struggle you’ve experienced since the diagnosis?
We were admitted to the hospital after Cole was diagnosed and my husband and I stayed with him. We were happy to be able to be with Cole, but also missed Hudson terribly. One evening he came to the hospital to visit us in the lobby. When I first saw him, I ran over to him to give him a big mama hug. But, he was angry and ran away from me. I was crushed and confused. Why was my baby who slept in my bed EVERY night running away from me? We talked it out, and he told me that he was upset because I told him I would be home the night we took Cole to the hospital. Yet, I never came back home or talked to him about it. It was at that point that I realized I had to be honest with him in an appropriate way. His life was uprooted as well. I also enrolled him in therapy to help him cope with all of the changes.
How did you manage to find joy in those low moments?
I tried to focus on just getting through each hour and then each day. I found joy in my boys. I found joy in connecting with other moms who knew how I was feeling. I found joy in the sunshine and listening to music.
Has your attitude about life shifted at all since the diagnosis?
Absolutely. Being exposed to childhood cancer changes you, forever. You can’t see children, especially your own, in pain, being poked and prodded, getting TOXIC drugs put into their blood stream and spinal fluid and not be changed. I no longer feel guilty for doing what is best for our family. I don’t feel pressured to say yes when I really want to say no. I don’t feel the need to force relationships with people who have not shown up for us and the boys. I am resilient, more confident in my role as mom, and have absolutely zero desire to do things that do not fill my soul.
So often people think grief and loss only affects those dealing with a death. What do you want others to know about grief from the perspective of a mom and caregiver who has lost a previous version of her life?
THIS. I ache for who I was before this. I was blissfully unaware of the number of kids who get diagnosed with cancer each day (47 in the US). Unaware of the number of children who die or who survive and suffer chronic health conditions due to their treatment protocol. I was carefree and happy. I now have seen a world in which I can’t ever unsee. I can’t forget the screams of children in the hospital. I can’t forget the livestream funerals I have watched for friends who have lost their children. Every single day I hope that Cole will continue to respond to treatment and live a long and healthy life. And every single day I also worry that he won’t.
How can a person best be there to support a loved one in a similar situation?
One of the hardest parts of this journey has been watching people go on with their lives as ours was falling apart. And I’m not talking about acquaintances, I’m talking about close family and friends. This is a common topic that is talked about in my Cancer Mom group. A simple text can mean so much. We know it’s uncomfortable to talk about it, but it’s our reality. We live and breathe it. Show them that you care. We have also had SO many people show up for us, and we are so thankful for them. While some people disappoint you, many others will surprise you.
Any resources that have been helpful for you that others might be able to utilize?
The number one thing that has helped our family has been donations. These have allowed me to take time off work to care for the boys and now work on healing myself from the trauma. We have also encountered so many wonderful organizations that provided support and resources. Some of the organizations are: Alex’s Lemonade Stand, Cal’s Angels, Ride Janie Ride, Brantley Francis Foundation, Finley Forever Foundation.
What brings you joy today?
The same things that brought me joy before are still bringing me joy now – simple days with my family. But with an even greater appreciation for them.
Want to learn more about Brittany and her story? Check out her Instagram account, @brittsheldon or find her on Facebook at Britt Magnus. Want to support her and her family? You can do so through her GoFundMe page.