Martha

As the fourth child, Martha was born in the summer of 2017. She was the fastest to walk and couldn’t wait to keep up with her siblings. In hindsight, it’s almost as if she knew her time was limited, and she tried to get the most out of it.

Martha could spend the whole day at the beach eating and playing with sand, building castles, and searching for shells. She was constantly exploring her environment and loved animals, especially the owl. But she could also quietly look at books or serve coffee and cake out of her kitchen.

When she did not fully recover from a cold at 1 year and 8 months old and she was walking more unsteadily we took her to the ER. When the symptoms worsened a neurologist admitted her to the hospital a week later. An MRI the next day showed a diffuse mass in her brain stem, initially diagnosed as DIPG, an incurable tumor with 9-15 months survival.

The diagnosis changed our world. Soon after we learned about the tumor she declined rapidly. A shunt, high doses of steroids, and radiation saved her life. A biopsy including debulking of the tumor some weeks later changed the diagnosis to ETMR, another highly aggressive tumor with low survival – but at least there was hope. She recovered quickly from surgery and started aggressive chemotherapy just days later with some initial success.

In total, Martha underwent 7 surgeries including open brain surgery and 46 sessions of radiation. She was sedated over 60 times, received tens of blood transfusions, and a dozen lumbar punctures or intraventricular injections.

And yet, she never gave up. After radiation, she learned how to walk again. After she lost that capability after surgery, she learned to crawl and stand up again. Martha fought very hard, but the tumor was too aggressive. The tumor relapsed and we had to stop the chemo. New trials showed no success. Re-irradiation bought her a couple more weeks and we had a last trip to the beach.

In February 2020, she passed peacefully at home in her mother’s arms surrounded by her family, three months before her 3rd birthday.

Martha taught us to be a fighter, to stand up, and enjoy life even when you are down. We miss her sorely and her loss will leave our family forever incomplete.