Love Shines Through, Even in Bleakest Moments of Brain Cancer Journey

My 16-year-old daughter is a brain cancer survivor. She is 10 years out from active treatment, which included surgery, as well as radiation and chemo so brutal I wanted to die just watching her go through it.

Healing Power of Support

The purpose of sharing our family’s cancer story is to tell you that love shines through, even in the bleakest moments. And no matter where you are in a health journey, my hope is that you, too, will experience the healing power of support. It is a lifeline.

In early 2002, our Marit was born a healthy little girl. She was our fourth child—I had wanted to have “JUST ONE MORE!”—and our busy family and professional lives ensued.

Could She Have a Brain Tumor?

Shortly before her kindergarten year, Marit started to experience some minor nausea and occasional vomiting.

I remember taking her to the doctor the summer before kindergarten, and specifically asking the doctor if she could have a brain tumor. This idea was promptly dismissed.

But as the school year progressed, her intermittent vomiting continued, along with other symptoms. Despite numerous trips to the doctor throughout the school year, the doctors continued to believe that these symptoms were related to “separation anxiety.”

Headaches, Feeling Tired

By May 2008, Marit’s symptoms had become even more frequent and pronounced.

She often complained of headaches and feeling tired, along with eye and leg pain. In addition, her balance became noticeably compromised.

After she had partially fallen down the stairs over Memorial Day weekend, I took her to the clinic we had been to so many times. She was seen by a nurse practitioner, who ordered an MRI.

I will never forget her stating that she ordered the test, “If for no other reason than to alleviate you and your husband’s anxiety.” I have vivid recall of the MRI day. The physician on duty stopped the MRI midway, and placed us in a room, alone.

Shock and Devastation

I am not exactly a novice in experience with adversity and tragedy. But nothing prepared me for these words: “There is no easy way to say it. Your child has a brain tumor.” I have vague recall of the first minutes and hours after hearing those words.

SHOCK AND DEVASTATION is what comes to mind, but the feeling was even more dark and bleak. Later on the same day, we received more devastating news. Not only was Marit’s tumor malignant, but the cancer had spread. Again, SHOCK AND UTTER DEVASTATION REIGNED in our family’s cosmos.

Before and After Brain Cancer Diagnosis

As commonly experienced by many after receiving life-shattering news, I think I blocked out much. But in that instant, I began categorizing my life into “Before and After” the cancer diagnosis.

My sister-in-law, Mary, a hospice social worker, set up a CaringBridge site for us right away. I had never even heard of CaringBridge. But as anyone whose entire world has collapsed knows, making hundreds of calls and/or writing emails to share the news is impossible.

Letting Loved Ones Know What Was Going On

We desperately wanted our loved ones to know what was going on, and to have accurate information. While experiencing chaos, we appreciated the ability to convey our requests for privacy regarding visitors, and being able to control what information was shared.

Within 3 weeks of diagnosis, during which time Marit had a brain tumor resection, our family moved to Memphis, 800 miles from home, for her to begin treatment at St. Jude Children’s Research Hospital. She received 6 weeks of radiation, followed by a 28-day break. Then there were several more months of chemo and other care.

Most Excruciating Experience of My Life

CaringBridge was a lifeline during the most excruciating experience of my life. I am not sure I would have survived mentally without it.

Not only was it a place I could safely communicate what was happening on Marit’s health journey; it was also cathartic to write about what had been swirling in my head all day long.

Watching my daughter endure treatment was horrific. She was extremely sick and miserable. She did not eat for months, and was sustained only by intravenous fluids through a central line. The treatment caused other bodily assaults as well.

The Cancer Aftermath Continued

We finally came home from Memphis after Marit completed her chemotherapy in early 2009. Yet, the cancer aftermath continued. I continued writing on Marit’s CaringBridge website for many years, to report on subsequent scans, a shunt failure, a relapse scare and other assorted post-treatment issues.

CaringBridge was often my only means of communicating. Other social media platforms were not the right place to share. I often poured my heart out in this safe space and relied upon the kindness of my family, friends, community, and even strangers who followed my site, to buoy me via their words while I felt as if I was often sinking in a vast ocean of constant emotional pain and sorrow.

Life is Different, But Life is Good

I also I gathered a lot of support and strength by reading other CaringBridge sites. Nearly every family I encountered at St. Jude had a CaringBridge site, and we all read each other’s updates. Although we often sat next to each other through treatment, we learned so many things about our kids, and each other, through our CaringBridge Journal entries.

Years after Marit’s active treatment, I still follow others on CaringBridge. If I can give back one-millionth of the love our family received during Marit’s health journey, I will still feel that we got more than I gave!

And while it might take a lifetime for me to recover from Marit’s experience, I want you to know that she is busy just being a teen-ager. Life is not the same after brain cancer, but life is good.

Here When You Need It

Are you or a loved one caring for someone on a health journey? If so, start a CaringBridge website where you can share updates and receive encouragement and support from your community. Visit the Ways to Help page, connect with your community, and ask for help with day-to-day errands, by setting up The CaringBridge Planner.

Berit Kyllo Francis a registered nurse, lives in Orono Minnesota with her husband and four children. Berit is a member of the CaringBridge Advisory Council and is highly involved as a volunteer with St. Jude Children’s Research Hospital. Berit also enjoys writing, running, golf, yoga, fashion and spending time with friends.

  • Jacey

    Thanks for stiratng the ball rolling with this insight.

  • susan caskey

    Thank you for sharing. Our daughter has had a brain tumor since 2002. We never had a caring bridge for Claire until last week. Her cancer has returned and a brain biopsy was done to determine the next step in her treatment. As you pointed out it’s never just the tumor but the many other trials resulting from it. The vertigo, epilepsy, compromised immune system. We felt it was time to start a CB site for Claire so she would feel support from others outside her immediate family. I was not expecting the outpouring of care and concern from people. Some we hadn’t seen for 15 -25 years. This is how God sustains us in times of trouble, I wish we hadn’t waited so long to start Caring Bridge, but I’m so glad we did.