Marit Mary Swenson is missed beyond measure. Just after her Sweet 16th Birthday, Marit succumbed to a very aggressive DMG tumor.
Marit was an amazing person. Full of love. Full of fun. Pure sunshine and goodness. Kind, and a friend to all.
From the day she was born, Marit was truly a delight. A happy, curious and extremely loving child, she had such a beautiful childhood filled with happy experiences and memories. In the fall of 2016, Marit started high school and was involved in many activities. Marit ran track, played varsity tennis and played viola in the orchestra. She loved being the big sister to her four little brothers. Marit had a heart of gold and was extraordinarily patient with their craziness. She developed a special relationship with each of the boys. Our family was active, healthy and loved creating memories together. Because she had always been a huge Disney fan, Marit and I were training for the 2017 Disney Princess Half Marathon and were looking forward to so much as a mother/daughter team. She had so many plans for her future.
Unfortunately, in January 2017, life as our family knew it changed drastically. Marit began experiencing headaches. She had always been a healthy child with nothing notable in her health history. Over the course of several weeks, the headaches increased in frequency, intensity and duration. We took her to multiple doctors, Urgent Care centers as well as a visit to the ER. Because headaches were her only symptom, doctors thought it was dehydration, allergies, hormones, or just stress from school. On Valentines Day, the headaches were unbearable. I took her to the pediatrician who suggested a sinus infection. Later that evening, the headache was extreme and she started babbling nonsense. My husband and I again rushed her to the Children's Hospital ER. The evening soon became a trauma filled blur for our family.
Over the course of the next few weeks we learned more and more about what was wrong with our sweet daughter. Marit had a tumor the size of a small peach, deep in her brain, in the thalamus. The tumor was likely extremely aggressive, due to the short and intense duration of her symptoms. She underwent a high risk 12 hour surgery. We learned of all the therapies (speech, occupational and physical therapy) that would be needed post surgery. Eventually, we learned the pathology and mutations of the tumor. I'll never forget reading the word "alarming" in the pathologist's report. It was extremely devastating to learn that her tumor had the H3.3K27M mutation. We knew that this mutation was the most aggressive and that survival would be measured in months.
Most incredibly shocking was learning that there was NO effective treatment for Marit or other children that had the H3.3K27M mutation or other DMG/DIPG tumors. How could that be? Overall Childhood Cancer survival rates were improving (averaged together they are currently at about 85%). Some types of brain tumors did respond to treatment and were curable. Moreover, there are so many amazing examples of scientific discovery positively impacting various diseases and conditions. And our government has an incredible amount of resources. But NOTHING for these kids? Kids with so many more years to live? Knowing that truth, that the standard of care was that same as it was in the 1960s, was infuriating.
Radiation therapy was only palliative, giving her several good months. We also desperately hoped that a clinical trial that we participated in would be "the answer" and would keep the cancer at bay as researchers would find a cure, or at least effective treatment. We truly had HOPE.
The cancer did come back, and spread everywhere (leptomeningeal spread). After another few weeks of traumatic experiences, and I use the word trauma in the deepest and truest sense, Marit passed away peacefully in our arms on August 29, 2017.
Marit was a light in this world to all who knew her. We continue her legacy with our efforts to assist researchers in finding that spark which will help lead to a cure for this extremely aggressive and deadly pediatric cancer, DMG/DIPG.
