Spotlight: Courtney Bloodworth & Leslie Trahan
Receiving a stage IV lung cancer diagnosis can be devastating news. Having to juggle the complexities of the disease with a young family makes it even more challenging. Yet this is the daily reality for many of our members. We spoke to two of them – survivor Courtney Bloodworth and caregiver Leslie Trahan – about how they tackle it all while maintaining a sense of normalcy for their children. Read on for what they have to say.
Courtney Bloodworth, Survivor, Raleigh, NC
1) Can you share a little about your journey with lung cancer?
I was diagnosed with stage IV lung cancer at 27 years old. At the time I was also 27 weeks pregnant with my second son. Like most, it was a complete shock to our family and totally rocked our world. There were mets (metastasis) to my liver, almost all of my bones, lymph nodes, bowel, spleen- pretty much everywhere besides my brain. I was very sick at diagnosis and delivered my son at 30 weeks to start Alectinib. The drug began to work and my symptoms (severe abdominal pain due to liver mets, excessive swelling/edema, chest pain due to multiple pulmonary embolisms) began to slowly subside. After a few months, once the side effects of Alectinib started to wear off, I started to feel more like myself again. . . . About 15 months into diagnosis, my first brain met was discovered. I had one treatment of cyberknife radiation and carried on with my “new normal” life. At the 2-year mark of diagnosis I had progression to my sacrum and hip bone area. I recently finished five high-dose rounds of radiation and am continuing on with Alectinib for now. . . . I always remember that things could be worse.
2) How have you dealt with juggling a stage IV lung cancer diagnosis and at the same time caring for a young family? What have been your sources of help, support, and strength to tackle it all?
Due to my son being born 10 weeks early, he spent 2.5 months in the NICU. It was a very tough time for our family. Dealing with this bomb of a cancer diagnosis, my newborn baby fighting for his life as a preemie, all the while trying to keep things as “normal” as possible for our 2 year old, was very difficult. When my son, Brooks, finally came home from the hospital, things did not get any easier. He struggled with several issues, eventually getting a feeding tube inserted into his belly. He had countless doctor’s appointments each week, multiple therapy appointments, and I struggled with fatigue. It was a very hard time, but we managed. Fortunately, we have a large community of family and friends that stepped in to help us. I would say my faith as well as my family is what gives me strength to keep moving forward. They give me a reason to wake up every morning and keep a smile on my face.
3) How do you go about maintaining a sense of normalcy for your family on a day-to-day basis?
After diagnosis, though I have yet to return to work, I kept my older son in daycare. I wanted him to continue on as things were before I was diagnosed. In the beginning, disciplining was hard for me. I didn’t want him to remember his mom as the “mean mom”. But as time went on and my positivity and outlook improved, my thought process changed from "no longer being here in the future" to "I will be here to witness him grow up" and I’d better discipline him to become a respectful young man. My children will always know me with this diagnosis. They will not remember life before it. We are more purposeful with our time. We are intentional about making memories with them every day and that is one of the good things that has come from this diagnosis.
4) What advice would you give a newly-diagnosed parent of young children in terms of maintaining a healthy family life in the midst of what can feel like an overwhelming diagnosis?
Accept the help and/or ask for help. Being a parent to young children is exhausting regardless. Add a diagnosis into the mix and it can suck the life out of you. It can be hard to find time to rest, but whenever you can, do it and don’t feel guilty about it (easier said than done). The dishes, cleaning, and laundry can wait. It’s important to take the time to just be in the moment with our families. Medical research is evolving every day. There are new treatment options that weren’t available just two years ago when I was diagnosed. There is so much HOPE. I remember when I first came into the Facebook group, Frank Sierawski left me a comment that said “I used to think 2014 was a great year to be diagnosed with lung cancer, but you’ve got me beat!” Being newly diagnosed can feel so dark and grim, but I promise with time things do get better!!
Leslie Trahan, Caregiver to Husband Andy, Monroe, LA
1) Can you share a little about your family's journey with lung cancer?
Andy was diagnosed a few months after his 33rd birthday with Stage IV NSCLC Adenocarcinoma that was ALK-positive. At the time of his diagnosis, our three children were very young (1,4,6). It was a very scary time for all of us. He was so sick that he was unable to do the things he loved most like playing tennis and being hands-on with the kids. I found that I became more and more his caregiver and less and less his wife. Shortly after beginning his first targeted therapy, life seemed to be somewhat “normal” again. Andy was able to be the daddy and athlete that he wanted to be, and I had my husband back. That sense of normalcy did not last long. Nine months into our journey, Andy developed an innumerable amount of brain mets and underwent 15 whole brain radiation treatments. That would be the first of many hard treatments with severe side effects. Since that time, Andy has had many different treatments, including: radiation to many areas, two more targeted therapies, immunotherapy, and a rainbow of different chemotherapy agents. The highs and lows of successful/failed treatments has been much like a roller coaster. We have zero control over what is coming next, so we just hold on tight and try to enjoy the ride. Andy just celebrated 7 years of survivorship. We are grateful for every single day with him.
2) How have you dealt with juggling Andy's stage IV lung cancer diagnosis and at the same time caring for three young children? What have been your sources of help, support, and strength to tackle it all?
Whew! The juggle has proven to be difficult at times. Our main concern for the kids has always been to give them a life where cancer was not the priority. Our children are the priority. They always come first. I, like other moms out there, try to be everywhere for everyone, but I am only ONE person. I/we have an amazing support system. We get support from our friends, family, church community, and work community. Someone is always available to chauffer kids around, babysit, prepare a meal, etc. These people along with our mighty prayer warriors give me the strength and support I need to be the best mom and wife I can during this journey.
3) How do you go about maintaining a sense of normalcy for your family on a day-to-day basis? How have you approached Andy's diagnosis when talking to the children?
Keeping life as normal as possible for the kids has been our number one goal from the beginning. The kids have continued all activities and even added a couple. We both support them and make a huge effort to attend every event, game, competition, etc. I think the biggest thing that I/we have done to keep as much normalcy as possible is maintaining a positive attitude in our home. I wake the kids with a smile and excitement for each new day, and we end the night with more smiles, hugs, and a reflection of how great the day was. If that day wasn’t great, we vow to have a better day tomorrow. Generally speaking, we try to keep the conversation in our house about them, not cancer. About their joys, triumphs, disappointments, and needs.
We have been open and honest with the kids about Andy’s diagnosis, treatments, and prognosis from the beginning. They are just as much a part of this journey as we are. Of course, we tell them information in a language that children understand, but we don’t keep anything from them. When we are all on the same page, it allows us to gain strength and courage from each other.
4) What advice would you give a newly-diagnosed parent of young children in terms of maintaining a healthy family life in the midst of what can feel like an overwhelming diagnosis? Any tips talking to children about the "new normal" in the family?
Keep it simple, but be honest with them. They may not need to know every detail, but make them feel like they are an important part of the team. It is important to keep their trust no matter how old they are. If possible, allow them to continue their life activities as normal and encourage them to try new things. I find that when our children are super active it distracts them from Andy’s illness and the reality of the diagnosis/prognosis. Be there when they want to talk about their feelings, but don’t “force” them to talk about it. Hug them. Hold them. Encourage them. Support them through all of their emotions. Simply continue to make them feel important and loved, so they know that cancer cannot and will not take away the love you share.
Are you too raising young children while coping with your cancer diagnosis? Learn more about resources and strategies to cope, here.