It seems like just yesterday that our family was in Hawaii for a family vacation, without a care in the world, just enjoying life. There was a whisper of the new "flu," but we had no time to think about sickness. We were young and healthy, and Hien had just gotten work hours at a location that allowed us to spend a lot of time together again. All our hard work during our youth was finally paying off, and we were ready to start enjoying our lives.
Then the whisper of COVID became a scream. We had to change our approach to living. We didn't get to see friends or family, but we had each other and our daughter. It was a change in our lives, but it was only supposed to be for a short time, and then we would get back to living our best life again.
Unfortunately, life never got back to normal for us.
On the evening of June 1, 2020, I drove Hien to Kaiser Urgent Care in Aurora, as many of the regular sites were closed due to COVID. Hien had a slight cough and fever, and we were both expecting a COVID diagnosis. We thought she would be given a doctor's note to stay home from work for a couple of weeks since she had been working at a COVID hospital for the previous couple of months. I sat in the car because I was not allowed inside with her. After over an hour, I received a call from Hien. She told me that we had to go to the emergency room because they had found something on the X-ray of her chest, and she would tell me more when she got back to the car.
After Hien got in the car and we headed to Lafayette, she told me that they had found a large, orange-sized mass in her chest. We didn't say much else during the drive. We were at a lost. It was dark, the roads were empty, and the car was silent. We got to the ER, and they took Hien in for a CT scan. Again, I sat by myself, not knowing what to think. My mom called. She was babysitting Kira for us and asked why we had been gone so long. I told her I would talk to her later and that we might be out all night. Hien came back, and a doctor followed shortly afterward. The doctor confirmed that she had a mass in her chest, on her lung, and that it was very likely cancer. They would be admitting her to perform a biopsy and get a proper diagnosis.
They wheeled her out of the ER, and I was holding her hand when, all of a sudden, the nurse looked at me and said that I had to leave. No visitors were allowed in the hospital. Hien and I looked at each other. We were both wearing masks, but I could see the fear in her eyes. This was not the time for her to be alone! We didn't move for a while until I finally had to say goodbye, give her a kiss, and go home by myself.
After I picked Hien up the next day, we were told we would get the biopsy results in a couple of days. During that time, we did endless research on lung cancer. We were both confused because Hien had never smoked, so it just didn't make sense. We waited a couple of days, then a couple more, then another week. When we finally received a call from the doctor, we were told that it was not lung cancer like we had originally thought. It was a Malignant Peripheral Nerve Sheath Tumor (MPNST), a sarcoma.
We were even more lost. We didn't know what that meant, and the doctor didn't have many answers because it was a rare cancer with very little information available. We got off the phone and started reading as much as we could about the disease. Unfortunately, there wasn't much information, and what we found was bleak. Survival rates were low and only occurred with tumors located in the extremities. We tried to stay positive. We were young. We were otherwise healthy. All of our hard work was supposed to be paying off. We knew we would get through this and come out stronger.
Hien fought as hard as she could, but after two surgeries that included removing her left lung, two chemotherapy sessions, a radiation session, and a 30-hour "day" of driving to and from Omaha to get targeted medication as part of a trial, Hien lost her battle on August 21, 2021.
Two days before she left us, Hien was able to accompany me to drop Kira off for her first day of kindergarten. She was weak and in pain but willed herself down the stairs and into the car to make that short drive and watch her daughter attend her first day of school. During those last few months, as COVID vaccines rolled out, Hien was able to see her friends and family again. They were able to see her face-to-face and have very meaningful conversations.
I still remember a wellness visit for Kira about a month before Hien passed. After the regular checks for Kira, the doctor focused her attention on Hien and asked if she was sick. Hien paused and said that she had cancer and that it was "terminal." This was the first time either of us had said that out loud. We both knew that she didn't have much time, but neither of us wanted to acknowledge it. The doctor had very kind words. She told Hien that she would ALWAYS be here with us, that we never truly leave, that our form may change but our energy remains, and that she knew Hien would ALWAYS be around for Kira. She gave Hien a hug on our way out, even though there was a strict no-touching policy at the time.
The hardest part of the whole ordeal was how lost we felt along the way. There were no answers to so many of our questions. We didn't know what to expect. We only knew what the next attempt at removing the disease would be. There was no set plan where, if we followed it, success was likely. By donating to this event, the hope is that, with more research, we can learn more about MPNST and all sarcomas, and that one day there will be a cure.
Let's help fund the research and take the day to walk and run together and remember Hien. Remember her positive attitude, her willingness to help no matter what, her smile, and her love.
As long as we remember her, she will ALWAYS be here.
