"I saw people in my life go through cancer, but seeing my daughter do it was devastating," he said.
I often discussed cancer with our dad while my sister was going through cancer, but since then, have rarely reflected back on that journey. As we approach the four-year anniversary of her diagnosis this summer, I wanted to sit down and talk to him about that time in our lives.
Below is a portion of that conversation.
Can you tell me a little bit about the day she was diagnosed?
It was one of the worst days of my life. Even though we had known she was sick, I didn't think it was cancer. But the night before when your mom and I came home, and we actually saw her, that is when I knew that it was cancer. I was like you, though, in that I didn't know which kind of cancer it was or how bad it was going to turn out to be. When we learned it was stage 4, I thought we were going to lose her.
Do you remember the first question you asked the doctor after the diagnosis?
I asked how the radiation would affect her. We were told that she wouldn't need radiation because of the kind of cancer. Ironically, that following October, she did end up needing radiation after all. Thankfully, that particular treatment wasn't that hard on her compared to the rest.
What was it like to see your daughter endure chemotherapy?
I saw people in my life go through cancer, but seeing my daughter do it was devastating. I was glad that it wasn't what I had previously known with other people I knew, but I was disappointed that the medicines we were using to treat her hadn't changed.
What advice would you give to other parents who find themselves in a similar situation?
I would encourage them to constantly ask why. Why this drug and not that drug? Why this treatment and not that treatment? I would also say that they should and need to get to know the nursing staff.
How did you get past that initial fear of thinking that she was going to die from cancer?
No matter how I felt, I knew that we just needed to calm down. We had to take it day by day because every day brought something new. And every treatment brought a new issue that needed to be solved.
How do you thinking having one of us sick for nearly three years impacted our lives?
Every minute of every day was devoted to her at the expense of the rest of you. If this were to happen again, I would want to do things differently. If I had known it was going to last so long, when she was doing well, I think your mom and I would've shifted our focuses towards the rest of you more than we did.
Even though she is over two years without cancer, do you still worry about relapse?
I am happy she is in remission, but we watched it come back so many times. I tend to think more about what treatments she could handle if it comes back because of all the complications she had the first time. I don't really dwell on it and the farther out she gets, the less I tend to worry.
Of the many consults we did with her care team which one did you find hardest?
After everything failed, that final push to get Opdivo (nivolumab) approved was the hardest. At that point, it was truly all that was left. During that time, you and I discussed making final arrangements and her death frequently. Those were some pretty hard conversations to have.
When you hear the word cancer now, what is your first thought?
Even though I thought we might lose her, I never gave up hope that this would work. Medicine is constantly changing, and cancer isn't a death sentence like it used to be.