Chordoma Foundation

Welcoming the unwelcome guest: Parenting with chordoma

As parents, particularly parents of small children, we’re filled with hopes and dreams – for their futures, for the way parenting and childhood are supposed to be, and for all of the magical moments and milestones we’ll experience together. We plan for shared adventures, and we work to protect them from monsters, both real and imagined. But for parents with cancer, it can feel like one of those monsters has arrived at the doorstep, and you have no choice but to let it in. While this unwelcome “guest” affects each family differently, many experiences, lessons, and – yes – even blessings are shared. If you have chordoma and are parenting a young child, you’re not alone. The Foundation can help you get the support and assistance you need and connect you with others who share your experiences.

For Mike Queensland and Kimberly Ochs, parenting with chordoma has been a lesson in letting go of control, learning to assess which challenges and opportunities they can take on, and empowering their loved ones to offer support. Though their families and experiences are different, many of their tips for navigating chordoma while parenting are the same. 

Mike’s story

Mike was in his 30s when he was diagnosed with chordoma in the summer of 2019. A busy attorney and dad of two young boys (one and four, at the time), Mike initially put off going to the doctor to get his persistent headaches checked out. When he finally did, a CT scan confirmed a mass in his skull base, quickly thrusting him into unfamiliar territory and kicking off an aggressive treatment plan that included over a year of surgery and radiation. This also included a months-long battle with the family’s insurance company to allow Mike to receive surgery from a chordoma specialist in nearby Milwaukee, which they thankfully won. 

Though Mike told his family and a few close friends and coworkers of his diagnosis right away, he describes it as a juggling act. For example, with his wife, the person he goes to for the most emotional support, he shared all of the technical and medical details. But at the same time, he was conscious of trying not to overburden her emotionally, knowing how much more of the parenting load she would have to carry while he was in treatment and wanting her to save energy for that.  

“When you’re going into surgery, it’s as good a time as any to think about who’s going to help your family. Whether it’s letting a friend drop off an old recliner or bring you a shower chair or letting a family member move in for a while to help with the kids, be willing to make the ask. It makes things easier and also makes the people who care about you feel less helpless.”

Mike Queensland, chordoma patient

Mike Queensland with his family

Throughout his treatment, Mike’s in-laws moved in to help with the boys several times, staying for weeks or months at a time, depending on the need. Mike and his wife explained to their boys that dad was sick with a disease called cancer and would sometimes need to go away for a few days or weeks to get treatment from a special doctor.

When he was home, they were honest about what was going on and how Mike was feeling, but didn’t dive too far into the details, letting the boys’ reactions and questions guide the way. Mike viewed his time away for treatments like deployments, recognizing that each return would mean readjusting to the kids’ new routines and figuring out where and how he fit into them.

“The biggest sense of normalcy I had was spending time with my wife and kids — doing a puzzle together, going on a nature walk, or reading stories at bedtime. Being with the boys forced me to be present and get out of my own head. They helped me realize that, even while sick, there were still a lot of ways I could be a supportive force in my family.”

Today, Mike is post-treatment, and settling into a new job. He’s hopeful about the scientific developments in the field of chordoma research and focusing on raising his boys and taking on new challenges. 

Mike Queensland and friends

Mike Queensland with his friends at the top of Torrey’s Peak

Mike’s advice for other parents managing chordoma

It’s ok to let go of some control. Accepting that you cannot control whether the cancer returns is difficult, but you can control how you live your life beyond cancer. Doing so will give you the freedom to try new things and help you model resiliency for your kids.  

Kim’s story

A biology professor in Cleveland, Ohio, Kim was eight months pregnant when diagnosed with chordoma. After going through two years of infertility treatments and suffering a failed pregnancy, Kim and her husband had spent the bulk of 2015 filled with excitement at the long-awaited arrival of their daughter, Hadley. But when Kim started experiencing double-vision that fall, her OB-GYN sent her to an ophthalmologist who ordered the MRI that revealed her clival tumor. 

“Even though I have a background in biology, I couldn’t grasp what was going on at the time. I was completely in shock and 100% focused on getting the tumor out of me so that I could have my baby.”

Thankfully, Kim lived close to a team of experts at the Cleveland Clinic where she safely delivered Hadley a few weeks before her due date and returned six weeks later for her first surgery. Those first six weeks were a gift, Kim explained. She was so focused on feeding, sleeping, diapering, and learning to be a mom that there was barely room for anything else. Though she would soon come to learn that many of the plans she thought she had for parenting (from breastfeeding to staying home with the baby for a full year) would need to be re-evaluated after surgery, those six weeks were filled with all the usual firsts she and her husband had craved.

Kimberly Ochs, chordoma patient

Kimberly Ochs with her family

Kim’s initial surgery went smoothly, and she was back home a few days later. But she soon realized she couldn’t care for a newborn by herself while recovering and decided to “go on tour” with Hadley so her husband could stay home and work to save money and vacation days. For the next six weeks, they moved from family member to family member, with both sets of parents and siblings all pitching in to care for the pair.

Shortly after, Kim started radiation at the University of Pennsylvania and spent nine weeks trading off care for Hadley with her family in Ohio while going back and forth to Philadelphia with her husband.

“I was in survival mode. I felt like I’d lost a huge part of myself all at once between having a child and getting chordoma. It was a big adjustment, but I had to learn to let things go, including whatever guilt I felt.”

Kim’s emotional journey went hand in hand with her physical one. She learned to cherish little moments in big ways, making memories with Hadley they could both hold onto. From baking a favorite cookie together to playing legos on the floor to creating an annual family photo album, Kim stopped sweating the big details she once thought mattered so much — yes, sending Hadley to daycare was fine; no, allowing extra screen time when she needed a break was not a big deal — and focused on the little ones. Like the time Hadley picked out dinosaur stickers for her mom’s glasses because they were way more fun than an eye patch, and Kim wore a triceratops with pride to kindergarten orientation.

It hasn’t always been easy. Over the past six years, Kim has experienced multiple recurrences, the loss of two of Hadley’s grandparents, and cross-country travels for cancer treatments during a pandemic. But she credits several things with bolstering and supporting her along the way, including her own mother’s example of strength through a painful neurologic disease, her close-knit community of female friends, and the support of her therapist, the Foundation’s Patient Navigators, and other chordoma survivors. Today, Kim is on systemic therapy to deal with a recurrence and has just kicked off her 21st year of teaching biology at Cuyahoga Community College. She still makes time for friends and fun, and also participates in the Foundation’s Virtual Chordoma Community Conference Series to learn updates and get tips from fellow survivors.

Kimberly Ochs, chordoma patient

Kimberly Ochs with her daughter

Kim’s advice for other parents managing chordoma

You don’t have to be everything to everyone. Say no when you want to, spend quality time with your partner and child doing things that make you happy, and seek out a therapist who can help you process and prioritize.

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