Interviews with ALK Positive Members:

Brandi Sebastiao, Forte Wayne, IN (biological mother)
Danielle Paul James, Oklahoma City, OK (adoptive mother)
Stephen Huff, Franklin, TN (biological father)
Camille Mondesert, Paris, France (mother via surrogate)

Receiving a stage IV lung cancer diagnosis comes with a lot of decisions. If you are in your reproductive years (like many of our ALK-positive patients) but haven’t started one yet, there is one more big decision to make. Do you opt to start a family regardless? And if so, how? There is no right or wrong answer, but there are many factors to consider. Four of our young patient-members talk about their individual journeys of starting a family as a stage IV lung cancer patient.

1. Can you share a little about your journey with lung cancer? When did you decide to start a family?

Brandi: “When I was first diagnosed with lung cancer I had just had my first child. She was only two months old when I started to have the infamous “cough.” Once I had gotten the diagnosis, I knew then I would not be having any more children. My husband at the time had moved back to his home country of Angola, Africa. I was supposed to move there once I had given birth, but my cancer diagnosis changed everything. I knew I would not be able to live in Angola any longer because of my health conditions, and with that being a third world country. It was a bit unsettling to worry about health care while in Africa. This had put a strain on my relationship with my now ex-husband. We grew apart from being so far away from each other.

I later met someone else, and it all just started to unfold at that point. He loves me no matter what my condition is. He had no kids at the time and it didn’t matter to him that I wouldn’t be able to give him any— he just wanted to share a life with me. Soon after he and I made it “official,” I was surprised to find out that I was pregnant. I emailed my oncologist 10 weeks into my pregnancy to let him know. He referred me to a maternal fetal specialist. I never stopped taking my TKI (it is generally recommended to stop in the first trimester) as I was only two weeks away from my second trimester. I was automatically labeled “high risk”. This meant I had to have an ultrasound every four weeks, and saw the doctor every two weeks. They monitor closely to make sure the baby is okay, and that the baby is growing the way it should without complications. My whole pregnancy for both children went as well as could be, and I’ve been blessed with two more healthy children after diagnosis.”

“He loves me no matter what my condition is. He had no kids at the time and it didn’t matter to him that I wouldn’t be able to give him any. He just wanted to share a life with me. Soon after he and I made it “official”, I was surprised to find out that I was pregnant.”

Danielle: “I was diagnosed in May 2013 with Stage IV ALK-positive lung cancer at the age of 25. At the time, I was single and working as an RN in the hospital where I was diagnosed. I completed four cycles of chemotherapy before switching to my first ALK inhibitor, Crizotinib. Shortly after my diagnosis, I started dating my best friend, Joshua. We realized that life was short and we wanted to be together. We fell in love despite my terminal cancer diagnosis. We agreed that as long as we were living, we wanted to be together. In January 2015, we were married. At the time of my diagnosis, I thought that I had lost all of my dreams for the future. On my wedding day, two of those dreams became my reality. I was now a wife, and also a stepmother to my five-year-old stepson.

We didn't know how much time we would all have together, so we embraced every moment. Eight months later, we discovered five new brain tumors which had metastasized from the lung cancer. I joined a clinical trial for a new drug, Brigatinib. It started working immediately on the brain tumors, and I decided to make the most of whatever amount of time I had on the new treatment. I started looking for a new purpose and meaning for my life. I started with caring for my stepson at home instead of sending him to daycare. I was nervous whether I would be able to care for him because I struggled with a lot of fatigue. We ended up having the best time hanging out and he became my reason for waking up in the morning! I realized that I could have a purpose as a mother. I loved spending time with my stepson. I was blessed to get to be his bonus mom, but I struggled with the desire to have more children. I started praying for God to give me a baby or to take the desire away, because it hurt too much.

I later realized that there were children out there that wanted and needed a mother to love them. My husband, stepson, and I decided to share our love and our home with those children. We had plenty of love to give. We started our foster care journey in 2016. I soon found new purpose in loving and caring for babies who were born addicted to drugs. I used my nursing experience to help them heal and flourish. Most of our children were able to reunite with their biological parents. But one little girl was not going to be able reunite. Her biological mother asked us to adopt her. JoyAnna Danielle James became our forever baby on October 1, 2019. She is the joy of my life. We are forever grateful for the journey that brought us to her. I often tell her, "God knew that you needed me and I needed you."

“I later realized that there were children out there that wanted and needed a mother to love them. My husband, stepson and I decided to share our love and our home with those children. We had plenty of love to give.”

Stephen, his wife Emily, and their lovely little baby

Stephen: “My journey with lung cancer began in the winter of 2016. A lingering cough and shortness of breath had reached a point where I finally decided to see a doctor. A brief visit to a walk-in clinic left me with a diagnosis of bronchitis and a prescription for an antibiotic. Twenty-nine years old, at the time, I was in good health. Exercise and proper diet were a way of life. After several failed antibiotic attempts, and now a small firm nodule above my clavicle, I scheduled a visit with my ENT, where a CT scan revealed several tumors in my chest/abdomen, including my lungs, liver, and spine. Shortly after that, on June 1st, 2017, I received an official diagnosis of stage IV non-small cell lung cancer. My oncologist highly recommended that because of my age, my fiancée at the time (now wife, Emily) and I should arrange to store my sperm if we'd ever like to start a family. Thankfully, we took my doctor's advice, and about two years into my journey with lung cancer, my wife Emily and I decided to start the process for In Vitro Fertilization (IVF).”

Camille: “I was diagnosed four years ago as I was finishing my medical studies, even though I had a healthy diet, was not smoking, and was doing sports on a regular basis. It was a real shock to me as you can imagine. I had metastasis in my liver and bones. The first TKI (Crizotinib) worked really well for the first few months, and less than a year after diagnosis, we decided to initiate a surrogacy as my husband and I had always shared a common wish for a big family.”

2. Did you have doubts about making this choice? Any challenges you have faced that are unique to a cancer patient starting a family?

Brandi: “I didn't want to tell many people that I was pregnant, and I kept it off of Facebook until I had my baby. I didn't want to be judged. I didn't want people saying "how can she bring a baby into the world when she is terminal?" I didn't want any negativity. This was my boyfriend’s and my decision to do this, and I am here to live my life like everyone else. I don't let cancer live my life for me. I just keep on living and thriving as much as possible. My cancer is contained (thank God) only to my lungs. I know my kids have an amazing father that would give them a great life if I am not around. We got one life to live and I am living it to the fullest!

I knew with me having a baby and being stage IV that my boyfriend would need to be a 100% committed in helping me with the children. I knew my energy levels are not that good some days and that my side effects can take a toll. My boyfriend was more than ready to be on board with it all. He was just so excited that I was even pregnant. We knew what risk it was to bring a child in this world under these circumstances. We did pray about it and kept hope alive. I knew God wouldn't give me anything I couldn't handle. I also had to ask my boyfriend if he can handle the kids without me if something was to happen to me. He is an amazing partner and father. He does about 50% of helping me out with the kids. Everyone tells me how lucky I am to have such a good father and man by my side. I am so blessed, and I am loving my life more than I could have ever imagined. My kids are 7, 2 1/2, and 1 now. I have come so far in life since being diagnosed. I own my newly built house and I also have an amazing family. Since the initial diagnosis, I never thought that my life was over— I just kept my head up and I keep pushing and pushing.”

Danielle: “I struggled with the ethics of having a child when I knew I might die. I didn't want to leave my child behind and put them through that loss and heartache. What helped me the most was when my oncologist shared his opinion: that I could be the best mother in the world for a child, for however long or short that time may be. Choosing foster care was a way for me to put that uncertainty in God's hands. If adoption was going to happen, then God would make it happen. If not, I would continue to love and care for all of the foster children I was given. When adoption did happen, I felt confident knowing that our daughter was going to grow and thrive the best in our home, with me as her mama, because we were already her family.”

“Better than most, cancer patients understand that time is finite. Time moves only in one direction – forward. You cannot stop or go back in time, but you can move forward with it. Starting a family and holding our son, Owen, for the first time vacated any doubts we had prior.”

Stephen: “It was and still is a massive leap of faith. Emily and I didn't take the decision lightly. Also, we did not make the decision overnight. It was something that we planned and prayed about for several years. It was very important for us to acknowledge our self-doubt and fear of starting a family. Better than most, cancer patients understand that time is finite. Time moves only in one direction – forward. You cannot stop or go back in time, but you can move forward with it. Starting a family and holding our son, Owen, for the first time vacated any doubts we had prior. We cherish every single second with him, and he's brought more joy and happiness than we ever imagined. I haven't experienced any cancer patient-related challenges, but I've learned a lot about sleep deprivation, haha!”

Camille: “We had the chance to be recommended a good place to do it at, Greece. I personally did not have doubts. It took me two weeks to convince my husband, and the rest of our family took a bit more time to accept this choice. The process went smoothly at first albeit being very intense and demanding. Eventually, the surrogate we had an agreement with decided not to go through and shared her decision shortly after I was diagnosed with brain mets and had to change TKIs. We took the summer to think through it and by that time we had a call by the clinic about a new person who could be our surrogate. It was now or never. We decided to go for it and meet that person. We took a flight a couple of days after that and met the person who would become our surrogate. She seemed nice, peaceful, and engaging. Before she even said a word we knew she would be the right person. After that, the process went relatively well and the cancer did not interfere. I just had to go through some specific medical exams prior to my oocytes being retrieved from me. But after that we were just another couple wanting to have a child.”

“We took a flight a couple of days after that and met the person who would become our surrogate. She seemed nice, peaceful, and engaging. Before she even said a word we knew she would be the right person.”

3. What would you advise a newly-diagnosed patient interested in starting a family? Any tips for navigating challenges, either physical or psychological?

Brandi: “My advice for anyone wanting to start a family or having some reservations about it would be to sit down and really evaluate everything. If I had lots of complications due to my cancer, I probably wouldn't be sitting here writing this story. I am thankful enough that my TKI pills are working great for me, and I have been on a long run with Ceritinib. I would advise though that we all know the risk, and that if a family is something you want to do, then GO FOR IT! There are risks with everything in life, but you only get one life to live. Don't let cancer define who you are or let it dictate your life. I took a leap of faith, and also because there is no concrete studies saying anything that would scare me to not have a baby. You won't find a oncologist saying "yes, I think it’s a great idea that you go have a baby." If that is what you are waiting for, it will never happen. But you can find one who will be by your side and support your decisions the whole way through. I am so lucky to have a supportive oncologist. He is the most amazing person/doctor that I could ever ask for. He has never once been negative, and has always asked me to keep him in the loop on things. THIS IS YOUR LIFE, SO LIVE IT AND LIVE IT HOW YOU WANT TO LIVE IT!”

Danielle: “My advice to any survivors who want to start a family is to look at all of the options. Families come in all shapes and sizes. There are many children waiting for a loving home. Adoption is a very special way to start a family because it's not about what you can get from a child, but what you can give.”

Stephen: “My advice would be not to let fear keep you from truly experiencing life. Easier said than done, I get it, but from my experience, the fantastic thing about becoming a parent is that you will never again be your own first priority. As a new parent, I learned from the first time I held my baby in my arms, that there is a type of love that erases all selfishness, and there are no words that can describe the euphoria you feel when your baby recognizes you for the first time and smiles. So live life to the fullest and be happy. You only have one life, so make the most of it.”

Camille: “Going through surrogacy is a choice not always understood by everyone. Some people did not understand, but with time most became encouraging. This is a choice that matters at the family level, and I guess the best advice is to talk through it with your partner so that it becomes a two-person decision and not only your decision; that way will make it easier in the future. Beyond that, there will always be some difficulties, but being two makes them easier to overcome! Also, talking openly about cancer helps, as people become more sensitive to your story and become nicer most of the time.”