My sister, Johanna, was the smartest and most creative person I've ever met. She was a whiz with LEGOs when we were kids, and we always knew she would become an engineer. It was no surprise when she was accepted into an elite engineering college. I tried to read her thesis, and despite it being in English, I couldn't make heads or tails of it!
Besides being brilliant, Johanna was FUN. She was always surrounded by friends and would put together amazing activities and adventures for her two little girls. She eventually started a small business customizing activity kits for other families - just like the activity books and crafts she designed for her daughters.
On July 8, 2019, I got a panicked call that Johanna had experienced a medical emergency and was airlifted, and that I needed to get to Houston, Texas *NOW*. Seeing her comatose, on a ventilator with wires everywhere and her head wrapped in bandages, is a sight I wish I could forget. She'd experienced a massive cerebral hemorrhage. Johanna awoke the next day and showed rapid improvement. During that week, however, we learned that the hemorrhage was caused by a rare cancer - one that had already spread throughout her body and brain, and had eroded a blood vessel, causing the bleed.
Johanna began chemotherapy and, while still very weak, was discharged to go home before her next round of treatment. She read bedtime books with her daughters and put them to sleep. That same night, she experienced another bleed and doctors were unable to save her. The odds say she should have died on July 8, but she fought for 10 more days. We are lucky we had that time with her, but it could never be enough. We never got to say goodbye.
I began twice-weekly therapy to work through the trauma of losing my sister. Digging into the pain was nearly as difficult as experiencing it the first time, but it was able to take the edge off to where I'm able to speak about the cancer that took my sister and spread awareness so no other family has to go through what I have.
Johanna's cancer, choriocarcinoma, is a rare pregnancy-related cancer. It is >90% curable when caught early. Three months after delivery, pregnancy hormones have left a woman's body and a pregnancy test should be false. If one gets a false-positive, they should ask to be screened for choriocarcinoma. A simple drugstore test could have saved Johanna's life. Johanna never even knew she was sick. I now tell anyone who is carrying a child to take a pregnancy test 3 months after their delivery, to be sure they are in the clear. I post her story on social media every year on the anniversary of her death, and every year get messages from new moms who have taken a test both to protect themselves, but also to remember and honor Johanna.
I hope that I can show Johanna's daughers that adversity may cause you to stumble, but that it's possible to carry on. You're never too old to grow and to work on yourself and to learn new things. I am stronger than I ever wanted to be, but I use that strength to help advocate for others and to share her story. I always said that I hope when I grow up, I can turn out like my little sister. I know she'd be proud of me.