Little Things Do MatterNiki Shah Nov 3, 2020
My 18-year-old nephew was diagnosed with pelvic osteosarcoma 3 months ago. I live in Colorado and he lives in Pennsylvania. Traveling to see him was quickly dismissed due to Covid-19. The last time I saw him was at a wedding a few years back. How do I reconnect with him 1,700 miles away? His parents said he mostly stayed in his room undergoing rounds of chemotherapy. Day by day, he had become hopeless, according to his parents. He felt sick all the time. He shared with his parents that he wanted to talk to me. My nephew had heard about palliative care and wanted to ask me questions about it. In my training within the master’s program at the University of Colorado, I had been taught how to have meaningful conversations, but never with family. Plus, he was entering his senior year in high school, just like my own son, compounding my own anxiety. Yet, I called him as aunt who periodically would put on her palliative care hat. I listened to him. He caught me up in the details of his medical journey. From biopsies to chemotherapy, he went alone. He had turned 18 in January, catapulting him into adulthood. Covid-19 further complicated his story.
Alone, he received his cancer diagnosis. My heart hurt listening to him, but he remained steadfast and strong in his storytelling. I noticed he didn’t share how he was feeling…..more a timeline. I then did something that he later shared with me he needed – validation. With the uncertainty of his cancer diagnosis, the Covid-19 fallout and staying home from school, his everyday life turned upside down. He finally broke through his tough exterior and cried releasing days of pent up emotions. It was crucial for him to know that his emotions could vary from day to day, and that was okay. It was okay to be angry and hurt. As our conversations developed over the days, he opened up. Yes, we talked about his cancer at length and am now I am part of his care team present via phone for his doctor’s appointments to advocate for him. Now our conversations focus on his everyday life. His dream is to go to Italy. I asked him why that country? His answer – food. His passion is food and loves Italian food. During prior chemotherapy treatments, he lost weight with his inability to keep food down. I said let’s bring Italy to you and come up with some dishes to try before his next round of chemo next week. His first attempt of macaroni and cheese was a less than ideal, but he was able to laugh at himself burning the milk and using sliced American cheese for the sauce. He was working with ingredients in the home. From a prior biopsy in his back, he developed “drop foot” on his right leg, making driving a car impossible. As my mentor, Dr. Amos Bailey always says, let’s think outside the box. Through the wonders of the internet, I found a way to send him online groceries for everything he needed to make caprese salad and a couple other treats. Through Facetime, we created grilled sourdough caprese salad sandwiches with truffle oil together. He was shy at first as he was unsure of how thick to cut the tomatoes or fresh mozzarella. I reassured him that he was doing great and how he was doing way better than my first time grilling a sandwich. Even though he asked for reassurance after every step and being 1,700 miles apart, he did it! His mother came running into the kitchen upon hearing his screams of delight as he ate his first bite. He proceeded to make the rest of the family sandwiches. Later his mother called and shared that these “little things” have changed him. He now interacts with the family more and is more present in the home. His laughter permeates through the home. It may change when chemotherapy begins again, but for now the laughter means the world to his family.
It may or may not be through palliative care conversations, however, think about how you can shape another’s day through little things. Everyone talks about using empathy statements. It’s one thing to demonstrate understanding through empathy, but I challenge you to take it a step further to create impact. Listen, Observe, Validate and Encourage. The results may seem like “little things”, however they can create lingering impacts.