I will never forget the call I received on the evening of September 18, 2019. Noah, the son of dear family friends, was taken for an emergent MRI due to concerning symptoms he had developed over the previous weeks. It was on this call that I received the news that the MRI showed Noah had a lime-sized tumor in his brain. Within a week, at just 12 years old, he was diagnosed with a rare, highly aggressive, terminal brain cancer called Diffuse Midline Glioma. His mom, Lori, is one of my closest friends and Noah, like a little brother to me, was the middle of three boys. I walked the journey with their family through diagnosis, 42 doses of chemotherapy, 30 rounds of radiation, and multiple clinical trials. Then we walked together throughout his end days, navigating home health and eventually hospice care.
I witnessed up close what is any parent’s worst nightmare. I was given a new perspective on what a grieving parent looks like. Yet I also saw the impact that each medical professional made on their family, both the good and the bad. This included doctors who gave brutal statements like “you have 6-12 months with your son, I recommend going home and making memories” without showing the slightest emotion. However, for the lack of empathy that some showed, there were also many others at the children’s hospital who showed an immense amount of empathy and love. It was people like Ali, the radiation tech; Carol, the patient transport; Luis, the hospital valet; and Jake, the home hospice nurse that really got it. They grasped their power. They made this unbearable journey include moments of joy and lightheartedness. They gave hope and love in the gravest of situations. These individuals, whose names and faces became seared into our memories while time was moving differently, were perfect examples of showing empathy and treating everyone like they matter. They treated patients as individuals, not like their diagnosis defined them, and they helped families journeying through a terrible diagnosis to enjoy the present moment of what life has given. It was in these moments – when each of these medical professionals truly listened to specific needs – that they were able to provide care in a way that alleviated stress and created a calming presence for Noah and his family.
Through these experiences, I truly understood the power that we hold as medical professionals to take away another unknown. We have the power to help make patients and families feel more comfortable with new equipment, medication or routines. Families managing these diagnoses are navigating a long and difficult road with huge changes to their daily lives. Healthcare professionals should never forget that we impact families with each interaction.
I’m privileged to work directly with medically-complex kids and I see, on a weekly basis, families walking through their own version of earth-shattering news, or headed home with an overwhelming amount of new medical equipment they have to learn about. In my current role as a dietitian with direct patient care, I guide families through the use of new g-tube supplies and feeding pumps. My goal and responsibility is to do whatever I can to alleviate stress. I want to ensure that these families feel heard and seen. Having a medically complex kid and leaving the hospital with new machines and treatments is overwhelming, and it is important to pay attention to the individual needs of each family. What may not be a big deal for one parent may be the tipping point for another. Too often I walk into the hospital room to parents and families looking like deer in headlights. My responsibilities here are clear. By the time I leave, they feel prepared for the next few steps forward… confident and ready to head home, feeling equipped and cared for, knowing they are not alone.
Walking this journey with Noah and the rest of his family has forever changed my life, and this experience shapes how I live each day, servicing others from a deep heart of compassion and empathy. In this way and many others, Noah lives on. After a brave 16 month battle with his DMG brain tumor, Noah entered Heaven on January 14, 2021. The NoahBRAVE Foundation was founded in February 2021 in Noah’s honor to raise awareness of DIPG/DMG brain tumors, support and care for families who have been given this diagnosis, and to fund for research for a cure of this disease.
