Because of Heather: One Mother’s Path Through Grief and Gratitude

My daughter Heather was funny and a little shy. She had a dry sense of humor and spoke her mind. More importantly, she had a generous heart. She always put others before herself.

A diagnosis that changed everything

On January 10, 2008, Heather was diagnosed with a brain tumor. She had surgery on January 11, and we were told it was a malignant brain tumor, medulloblastoma. 

After researching options, we chose St. Jude Children’s Research Hospital for Heather’s treatment. As soon as we spoke with Amar Gajjar, MD, he put our minds at ease as best he could. 

We were at St. Jude from January through late September 2008. Radiation was not easy for Heather, as she threw up 10 to 20 times daily. High-dose chemotherapy proved even more difficult for her. 

Support from an unlikely source

In 2009, Heather saw a documentary about the Friends of Jaclyn Foundation. It pairs pediatric brain tumor patients with sports teams and community groups as honorary members. A week after Heather applied, we got a phone call from the University of Florida Gators softball team asking to connect with her. 

The Gators embraced Heather and often joked about her liking the Florida State Seminoles (Heather grew up a Florida State fan). The Gator players boosted her confidence and gave her a place to belong. At all home games, Heather hung out in the locker room and in the dugout with the team. 

They had a special bond. To this day, Heather has a locker in their locker room. After she died, the University of Florida placed a permanent sunflower exhibit inside and outside the stadium. Fans and visitors can read about her story and the connection she formed with the Gators. 

Return of the tumor

In 2013, we learned the tumor had returned in the same location 5 ½ years after Heather’s original diagnosis. This was extremely rare, and St. Jude did not have a current protocol in place. 

Heather took the news with some tears but a desire to fight. She trusted St. Jude. 

After brain surgery, doctors suggested another round of radiation, which was the only option. Heather tolerated it much better the second time.

A few short months later, we found out her diagnosis was terminal. She decided to take chemo at home to be with her family and animals. Even then, I continued searching for options.

We found a clinical trial in Houston, and Heather agreed to go. At 17 years old, she deserved to have a voice in her treatment. Greg Armstrong, MD, agreed this could be a viable trial for Heather.  

After a week of testing, she had her third brain surgery to try to get more of the tumor out. Four days later, Heather was discharged and wanted to drive home with my sister and me, rather than flying home with her dad. Our plan was to stop in Tallahassee for a few days to visit my family and my husband’s before heading home.

We never left Tallahassee. Heather died there on March 25, 2014, surrounded by family. 

From pain to gratitude

Those final days in the hospital were harder than I can put into words. No one can prepare you to watch your child die.  

At times, I asked myself, “How did I get here? What happened?” Grief hits you out of nowhere. I had to concentrate on taking one breath at a time. 

I never lost hope even after Heather’s death. Hope looked different but was always there. I am forever grateful for what St. Jude did for Heather and continues to do for other children and their families. 

Finding guidance through other parents

Three weeks after Heather died, my sister took me to a Compassionate Friends meeting. It was my saving grace. 

There is a special bond among bereaved parents. You can feel the love and understanding without ever saying a word. I also found comfort in listening to other parents’ stories.

Hope and faith get me through the darkest days. Hope never looks the same; it changes with you as you grieve.

The year that Heather died, the Gators advanced to the Women’s College World Series. My brother and husband arranged for my sister and me to attend. 

The Gators wore “Team Heather” warmups, “HB” on their helmets, and sunflowers in their hair. After they won the national championship, they brought me onto the field to celebrate. They had “Team Heather” engraved into their national championship rings, and they gave me a championship pendant. 

It was painful because Heather was not there. But remembering how happy she would have been brings me comfort and makes me proud of her continued impact on people. 

I can hear her saying, “Mom, I’m the reason you went. Don’t forget.” 

And I think, “Yes, ma’am. You are.”

One breath at a time

Over time, I’ve learned some of the best support comes from other bereaved parents. It is a connection you wish you never had, but are so thankful exists. 

I started volunteering as a parent mentor through St. Jude. I then joined the Quality of Life Steering Council and became a parent educator for St. Jude fellows, nurses, rehab services, and the Global Academy. Here’s some of the advice I share with them: 

• Respect that people grieve differently: Honor your own beliefs while accepting that other people grieve differently.
• Take 1 breath at a time: This has been my motto since Heather’s diagnosis. As parents, we want to fix everything, and the death of a child cannot be fixed. Grief is something we learn to carry; it is a lifelong process. If you break down at work or in the grocery store, that’s OK. Feel the feelings as they come. 
• Don’t be afraid to step back: Learn to say no and set boundaries. If plans feel overwhelming on the day of an event, it is OK to cancel. You have to learn to put yourself and your family first.

Keeping Heather’s spirit alive 

At Heather’s request, we donated her brain to St. Jude for research. I know she is proud of what they have learned and will continue to learn. Heather would have turned 30 years old on November 11, 2026.

I find strength in sharing Heather’s story and raising awareness about childhood cancer through Sunflower Saturday T-shirt sales.

I have found my purpose through grief. Volunteering at St. Jude is a gift I will be forever thankful for. The bereavement program has continued to grow tremendously since Heather died.

Siblings are often the forgotten grievers. I hope to be able to help develop a sibling program at St. Jude.

In everything I do, I can hear Heather in the back of my mind saying, “It’s because of me, Mom.” 

And she is right. It is because of her.