Jillian was a vibrant, health conscious, active young professional working as a Registered Nurse at Jackson Memorial Hospital’s NeuroSurgical Intensive Care Unit in Miami FL. At 28 years old, the pinnacle of her life, Jillian received an unexpected diagnosis of Stage IV lung cancer. She battled for 10 months before she passed away on May 4th, 2013.
Just two years earlier, in the next state over, also at the age of 28, Austin received the same shocking diagnosis of Stage IV lung cancer. Handsome, intelligent and gregarious, Austin had just married the love of his life and was embarking on an exciting new chapter of his life. Austin lost his battle to lung cancer after 7 months on May 4th, 2011.
Both Jillian and Austin’s mothers, Ros and Cindy, met each other at the National Lung Cancer Summit in Washington DC this April, where they came to fight the battle their children no longer could. Over the course of the event, they found that not only did the date of May 4th play a significant role in both of their lives, but they had more in common than they could imagine. We sat down with Ros and Cindy to discuss their individual experiences and what advice they would offer other parents dealing with such difficult circumstances.
How did it feel when you found out your child had lung cancer?
- Ros: It felt like our world collapsed in the blink of an eye. It didn’t make sense. Someone made a terrible mistake.
- Cindy: Worst day of my life. I cried and cried and nothing could console me.
What was the first thing you did when you found out?
- Ros: My husband started to cry. As for me – I was just numb. If there was an answer, a better way to fight this, I was going to find it and prove the doctors wrong.
- Cindy: I have never thought about this, but looking back we were in shock. We immediately went into “How do we save his life?” mode.
How did you support your child?
- Ros: We talked about the best place for her to get treatment. We thought about getting an apartment in Miami, so that she could keep her life as normal as possible for as long as possible. We made phone calls to people we knew to get options. In the end, Jillian wanted to come home, to us, in Tampa. She was comfortable and secure there.
- Cindy: We made sure that his every need was met. Austin was already very sick when he was diagnosed. We were at MD Anderson in two days, which was his choice of where he wanted to be treated.
What advice would you give to other parents who have a child with lung cancer?
- Ros: Make the most of your time with your child. Respect their independence and their decision-making abilities. Talk to them about anything and everything. Some topics are going to be extremely hard. You can’t make them better or fix what’s wrong within them but you can make whatever time they have better. Watch movies, sing songs, hold hands and go for long walks. Spend quality time with them. Every day from here on out is a gift.
- Cindy: Explore every option. Be as aggressive as possible. Get copies of everything. Ask a million questions. Research. Research. Research. Network with others. Allow others to help.
Why did you decide to get involved in advocacy?
- Ros: For me it wasn’t an option. I knew that if I just grieved, I would wither and Jillian wouldn’t want that. So I had to speak for her, tell her story. Someone had to hear what she did for lung cancer and what it did to her, to us. Someone had to act and make changes in the funding and research that wasn’t getting done because of the stigma. I didn’t know who would do it if not me.
- Cindy: I am not sure. Austin expressed wishes to family and friends to work so that others did not have to go through what he did. I also began researching and looking for help online and discovered that I really knew nothing about lung cancer. The more I learned, the more I realized how misunderstood and grossly underfunded lung cancer is, both publicly and privately. So I guess that fulfilling his wish was important to me. Being an advocate also gives me a way to channel my grief into something positive. I do know that doing nothing was never an option.
Where did you find strength through it all?
- Ros: I guess a lot of it was always inside of me. But my husband and children were very supportive even though they didn’t know it. And I had a few very dear friends that got it, understood what I must be going through as a mother. I kept telling myself that Jillian would want me to fight for her.
- Cindy: Faith, family, friends. Sounds like a cliché but it is true. My husband was amazing, loving, supporting and took care of all of us. Austin’s wife Haley was an incredible comfort for Austin. They celebrated their first anniversary in the hospital but the strength and courage that they showed while facing this terrible illness was a beacon for all of us. They tried to focus on thankfulness during thisworst of times.
How did others initially respond when they were first told the news?
- Ros: We told our sons first and they both cried and denied it. This was their baby sister and they wouldn’t let this happen. My parents were in denial and didn’t think it was as bad as it really was. We told them we needed them to take care of themselves because our focus was going to be on Jillian. My siblings said they were sorry but it would be okay. They refused to understand that this was a terminal disease. Our friends were very understanding, knew what the words lung cancer meant and that they would be there for us.
- Cindy: With support, sadness, many questions and worlds of offers to help in any way. I really cannot say enough about Austin’s group of friends. They rallied around him, taking turns staying with him, getting him out when possible, loving and supporting him.
“I now try to think, ‘Okay, this is the worst thing in the world that could happen to me, and now what can I do about it? How can I make a difference in this fight?’” – Cindy