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I remember sitting with my father on his deathbed. All six children (Jennifer, Melissa, David, Justin, Katie and Elizabeth) had flown in to be with him for his final days. We took turns swabbing his mouth to help him stay as comfortable as possible. My mother hardly left his side; she lay next to him on their bed and held his frail hand in hers. Letters and phone calls came from dear friends and family as he bid farewell to the people he loved most. He looked nothing like the robust father of our youth: his skin sallow, his eyes sunken, his movements and breathing labored and delicate. We wept so many times that week and even more the following week when he passed away.
When he died, I thought “I hope I never have to watch someone go through that again.” Little did I know that it would now be a strong possibility in our family’s life.
We discovered less than two years later that those five bouts of cancer my father endured during his lifetime were a result of Lynch syndrome, a genetic mutation that predisposes its carriers to certain cancers at a young age. My brother, Justin, was the first family member to hear about the syndrome and tested positive for it. As soon as we got his email detailing the mutation, we all started testing, as well. My tumor was the first to be found. It was the day before Thanksgiving, two months after my 38th birthday. The surgery to remove a third of my colon was scheduled for December 18, which was my dad’s birthday. The surgery went well, but complications from the surgery readmitted me to the hospital a week later. Just a day after coming home from the hospital the second time, my 34-year-old sister, Katie, called in tears with the news of her stage 3 cancer. She had a lump the size of a mandarin orange in her colon and was told explicitly that she would need chemotherapy. Based on her CT scan, the doctors suspected that the cancer had spread to her lymph nodes, and the nodes may have carried it to her liver, as well. Chemo would be necessary to kill any leftover cancer cells, even if it was just preventative. They informed her she would need to harvest her eggs if she planned on having any more children, since the chemotherapy would likely do irreparable damage to her egg supply. She would also most likely need to do fertility treatments in the future if she wanted to have more children. We cried together again and prayed for each other and our siblings who had not yet been screened.
On December 28, she went in for surgery. As she was being rolled into the operating room, hair in the net and IV in the arm, a nurse ran into the room and yelled “Stop! She’s pregnant!” Realizing that the nurse was speaking about her, my sister and her husband, who were not trying for another baby, looked at each other and started laughing. This was more than a surprise, it was a miracle baby! After the test results came back affirmative once again, the surgeon gave her some options. She said there was a high risk of miscarriage and/or malformation from the anesthesia during the first trimester, but it was still an option. If she waited to have the surgery until after the major organs had developed in the baby, there was heightened risk to Katie, because the cancer could potentially spread to the lymph nodes and liver, if it wasn't there already. Third option was to abort the baby and continue with surgery, as planned. The doctor intended to take her case to a cancer convention the following week to get recommendations on the best course of action.
My sister recorded: “The next week I got a call from the surgeon saying that after consulting with the other medical professionals at the conference, they concluded that tumor removal was first priority so the recommendation was to continue with surgery during the first trimester. The information she had originally given me about malformation and miscarriage was incorrect and in reality the risks for both of those was low. I decided to go ahead and get the tumor out.”
Meanwhile, on my side of the country, the pathology reports came back. They showed that we had caught the cancer extremely early. We were looking at stage 1 colon cancer. It is extremely rare to catch colon cancer so early. I needed no chemo and no radiation and the likelihood of recurrence (of that specific cancer) was only 5%. I was tentatively relieved, waiting to hear the news from my sister.
Miraculously, the pathology reports of her removed lymph nodes and liver biopsy showed NO signs of spread. They downgraded her to stage 2 colon cancer and she no longer needed to get chemotherapy or radiation. The baby was safe and she didn’t have to see a high-risk pregnancy doctor. This little miracle baby was born in September and is healthy and happy.
All of my other siblings have been screened and are currently cancer-free. Our family is lucky. We consider the timing of my brother’s discovery of Lynch Syndrome the greatest miracle of all since that is what helped all of us catch these tumors before they got worse. We hope to help other families with genetic mutations like ours to be informed. We are also excited by research suggesting the cancer landscape could look a lot different than ours does in a few years.
For this reason, we raised $6,000 for FORCE (Facing Our Risk of Cancer Empowered) to support hereditary cancer research as part of a RunDisney challenge. More knowledge equals better treatments, screenings and, hopefully, cures. It is our hope that with our dedication to run, we are able to provide FORCE with a donation to help not only our own family and our children, but other families that face hereditary cancers, as well.