Navigating childhood with a brain tumor

Navigating childhood with a brain tumor

In November 2020, our 3-year-old daughter Maddie was losing weight, suffering from exhaustion and low-grade fevers and occasionally throwing up. Her pediatrician at the time ran bloodwork and said everything was “normal.” One morning, we woke up to find Maddie breathing but unresponsive. She couldn’t communicate, open her eyes, sit or stand, and her skin had a greenish tint to it.

We rushed her to our local emergency department, where her brain tumor was discovered.

Maddie was transported to Advocate Children’s Hospital – Park Ridge. She underwent emergency brain surgery to drain the fluid building up on her brain from the tumor, a pilomyxoid astrocytoma, to be exact.

Later that week, Maddie had another surgery to remove part of the tumor. Because of its location near her optic nerve and pituitary gland, a total resection was not possible. She spent two weeks in the hospital recovering and relearning how to walk and use her body.

But the tumor kept growing. Maddie began chemotherapy through a surgically implanted port. When the tumor still didn’t shrink as we hoped, she underwent another surgery to place a shunt in her brain to drain the fluid buildup. She’s now had 40 rounds of chemotherapy.

Maddie regularly sees many specialists and undergoes sedated MRIs every three months. The tumor will never be fully gone and will require constant observation and additional treatment until Maddie reaches adolescence or early adulthood – we’re told these types of tumors tend to “shut off.”

I can’t even put into words what Dr. John Ruge and Advanced Practice Nurse Elizabeth mean to our family. They’ve been a constant, calming presence, answering our questions and seeing Maddie right away, whether for an MRI or even unplanned surgery. Dr. Ruge is always completely honest with us about Maddie’s diagnosis and her road ahead. We trust him completely, and that has never wavered. They care so genuinely, which makes all the difference to us. Dr. Daniel Choi, Maddie’s oncologist, and his team are amazing, as well.  The nurses do a wonderful job accessing Maddie’s port and getting to know her. Kevynne, the child life specialist, keeps Maddie busy with endless crafts during chemo. The personalized, hands-on, genuine care we’ve received at ACH has made it feel like home.

Maddie will be 5 next month. She has the biggest heart and the best attitude of anyone I’ve ever met. Sometimes she’ll get sad and ask why she has a tumor, but it’s almost a fleeting thought, and she’s back to defending her brothers (even when they don’t deserve it), saying how much she loves us or feeling so emphatically towards others. She loves preschool, ballet, going to the park and singing her heart out to Frozen and Moana.

This has been extremely tough on our family but has brought us even closer together. We’ve reevaluated our outlook on life and what truly matters.

If I could offer any advice to someone going through something similar, live and embrace the here and now. Don’t worry about the future – focus on making it through the day. Embrace the simple days. Those normal ones at home with your family. I thank God every day for those days.

Find a team of clinicians who make you feel comfortable and who you unequivocally trust. Celebrate the victories and go with the flow. This is a journey full of many setbacks, twists and turns, so immerse yourself in your faith or whatever you believe in spiritually. And at the end of the day, remember to take care of yourself.

Are you trying to find a doctor? Look here if you live in Illinois. Look here if you live in Wisconsin. 

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