Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
Being a parent, my biggest fear is my child getting sick. I think that is a constant fear, regardless of how old your child is. So when I was diagnosed with mesothelioma, my parents had to face that fear. I was their child, their baby, and now I was fighting for my life. Then, with me being a new mom, they had to take over my role as a parent while I was in Boston for my surgery. They were much more than Grandma and Grandpa—they were, in every sense of the word, parents to her in our absence.
When I was released and able to go home, our plan was for me to live with my parents for 2 months so they could still help with Lily while I recovered from surgery. I was not able to care for her on my own and Cameron had to work so we could keep a roof over our heads. I arrived in Rapid City, South Dakota on March 2nd, exactly one month after my surgery. Navigating airports after having a lung removed is challenging at best-- I had arranged for wheel chair assistance to get me from the airplane to baggage. As the attendant wheeled me up the ramp to the receiving area, I caught a glimpse of my mom. The look on her face is not one I will soon forget. It was 100 emotions all at once. Fear, gratitude, pity, sorrow, happiness-- too many emotions fighting to get out and the only thing that could surface were tears. I’m sure it was a shock to see me, pale, noticeable thinner and frail-- not the girl who she had left in the airport a little over a month earlier. As we made our way to the baggage area, I pretended that everything was fine and tried to joke. I joked about being helped in a wheel chair, saying having one lung does have its advantages. But nothing helped. She was strangely quiet. Something more was going on. We got my bags and made our way to the car.
On the drive home, I finally just asked her what the hell was up. The damn broke. “Lily has the flu!” She was so upset. Early that morning, Lily started throwing up. Of ALL days to get sick, she ends up sick on the day I came home. I knew I couldn’t risk getting sick so soon after surgery, so I had to call my doctor to find out what to do. I was to keep my distance from her for at least 24 hours after her fever went away and wear a mask if I was close. My mom had a friend come over and disinfect the house while she was picking me up, so as to eliminate any possibility of getting sick. My mom was so upset because she knew how anxious and excited I was to see and hold my baby girl, and now it was going to be prolonged a few more days. My attitude? Oh well, what can you do. I would just have to wait an extra day. I wish it were that easy. In reality, I was heartbroken. I couldn’t wait to hold her, kiss her, look at her sweet little face, and get to know her again. It had been 4 long weeks. I missed her entire 6th month of life, and I was anxious to catch up.
When we walked through the door an hour later, Lily was home with my dad. I had to put on my facemask and look at her from across the room. She hadn’t been sick in awhile, but to be safe, I needed to keep my distance for another day. I choked back tears, feigned exhaustion, and went downstairs to my old bedroom and cried myself to sleep. The next morning I was up bright and early and excited to see my baby. She had gotten so BIG over those 30 or so days I was gone! She was eating baby food, she could roll over, and pull herself around or creep-- she was so adorable. I couldn’t wait to hold her, inhale the scent of her, and just get to know my baby all over again.
Lily was in the living room with my dad and mom when I came upstairs from the bedroom, sitting on my dads lap cooing and talking. I walked in and sat in a chair across from them. Dad held Lily out to me and all I could say was, “Hi Baby! Mommy missed you!” My dad handed her over and she was in my arms for the first time. I would love to say that she recognized me and it was perfect, but I think she was still a little confused. As I held her, I began to hum the song I used to sing to her to while rocking her to sleep. It was just a tune I had made up but it was our song. When I started to sing, Lily looked up at me, smiled a big gummy smile, and rested her head against me. She remembered me. I cried more tears of joy this time.
Over the next few days, my mom still took her to daycare so I could rest. At this point I was still sleeping a lot and recovering. It would take all my energy to get up, get Lily ready to go, feed her, and send her off. I would go watch TV in my parents bedroom, take a little nap, wake up, have some lunch, take a walk, or someone would come visit. I would usually take another nap in the afternoon and then my mom would come home with Lily. We settled into this little routine for the next month or so. As my strength returned, I was able to care for Lily longer and longer. By the time April rolled around, I was able to care for her all day.
During April, I had to go back to Boston for post op check up. I flew out to Boston on a Monday, had my appointment on Tuesday with Dr. David Sugarbaker and the medical oncology team at Dana-Farber Cancer Institute. They decided on my chemotherapy protocol and sent all the information to my oncologist in St Paul. A long busy day, but a lot was accomplished. I flew home Wednesday, a quick trip, but frequent trips to Boston were all part of my life now. Cameron, my husband, was able to make only one trip out to see us during those two months. He drove overnight 12 hours in a brutal snowstorm to get to Spearfish to spend the weekend with us. I had only gone one month without seeing Lily, he had to go through three. In that three month time, he spent approximately 36 hours with her. Once again, not ideal, but it was a sacrifice he had to make. What we are both thankful for is that Lily was so young, she doesn’t remember any of it. She was surrounded by people who loved and cared for her.
After a very fast weekend, we said our goodbyes to Cameron, and made plans for his next visit, which would coincide with my trip home. We planned to go home at the end of April, beginning of May, right before I was to start chemo. Cams would drive out, pick up all of our stuff and myself, and the two of us would drive back to Minneapolis. My mom would fly out with Lily a week later.
It was during the last weekend in Spearfish that the true meaning of “it takes a village” was revealed to me. Some friends of mine and my parents put together a chili feed benefit for Cameron, Lily, and I to help offset some of the medical and travel expenses. Cams and I were absolutely blown away by the number of people and the amount of support that surrounded us. All the people from my hometown came out to help us. Our travel back and forth to Boston didn’t seem so daunting anymore. The money raised from that benefit paid for many airline tickets and hotel rooms. Cams and I finally got into the car and drove those 600+ miles home on the first of May-- our hearts filled with love, and hope. My appointment in Boston had been great and now I was to start the next leg on this cancer journey-- chemotherapy.