It's all about having a plan. Plans give hope. Plans inspire.
"Boys are at a friend's house so we came to our 'happy place!'" - Jennifer Manning (left) [Photo courtesy of Jennifer Manning]
In 2004, while living and working in New York City at age 31, just two months before my wedding, I was diagnosed with Stage 4 thymoma, a rare form of thymus gland cancer. As you can imagine, after all of the tests and doctors appointments with oncologists, surgeons, etc. the most important topic was creating a plan. I was given time to be scared, to cry and worry and cry some more and then my doctor said, “No more tears, time for a plan. Here’s what we’re going to do.” I was to have open heart surgery at NYU Medical Center to remove a grapefruit-sized tumor from under my sternum along with a portion of the lining of my heart and left lung. Thirty days later, I would have a second surgery which would require the removal of a rib, removal of another large tumor pressing on my right lung, a section of lung and half of my diaphragm which also had several tumors. Thirty days later, we would get married. Yes, it was the doctor’s goal and ours, to be married on time! Thirty days later, I would start four to five months of dual chemotherapy at Memorial Sloan Kettering Cancer Center followed by ten weeks of daily radiation. This was the plan? Wow. It was certainly a lot to take in but at least we had a plan and we could take action.
What was missing from this plan was the most important part of our plan — to get pregnant on our honeymoon. Even in the face of this diagnosis, we began inquiring about when I could get pregnant. The fact that we were the ones who brought up the topic is what sparked even more discussions and a more detailed plan. The scary thing is that if we hadn’t brought it up, it wouldn’t have been addressed — not by the nurses, not by the doctors. I understand the doctors and surgeons wanted to save my life and for that, I am eternally grateful. However, I want to share my story so that fertility preservation naturally becomes part of the conversation … part of every patient’s plan. We met with the NYU Fertility Center before the first surgery and created a plan. It’s all about having a plan. Plans give hope. Plans inspire.
After both surgeries, after our wedding and during our honeymoon, we would do all of the hormone injections to prepare for an egg retrieval and fertilization to create embryos and freeze them. Now that’s what I’m talking about! Talk about hope! The recovery from the surgeries was incredibly difficult. I was basically cut wide open down my chest and down my side within 30 days of each other. The pain was so unbearable, I remember sitting on the bedside not able to breathe to cry and just had to use my eyes to beg for help, for someone to do something for the pain. Tears would fall but I couldn’t make a sound because my new artificial diaphragm was so weak and fragile. I lost almost 20 pounds in 30 days and my body was weak and frail, but my mind was not. My love for my husband, our hope for our future together and making it to our wedding day is what kept me going. The support from my mom, sisters and family and friends leading up to our wedding was so unbelievable! I wasn’t able to do anything to get ready for our big day. Without them, it never would have happened. We had the most beautiful, spiritual and emotional storybook wedding ever imagined! We had a moving ceremony in our church followed by a black tie. Then it was off to our honeymoon coupled with injections, sleep and recovery from surgery.
When we returned to NYC, the egg retrieval was a success and we froze seven embryos. I felt so much relief and hope that day. If we were fortunate enough, we might be blessed with a child. Then it was chemotherapy and radiation, meetings with oncologists at Sloan Kettering, more blood, more scans and more appointments. We did it all in stride all in line with the plan because in my mind I had a bigger plan: babies!
The four months of chemotherapy were challenging, to say the least. I was tired, I lost all of my hair and I was thin — way too thin. Radiation was pretty horrible, too. I took a taxi every day to Sloan Kettering for 10 weeks. It truly was a test of wills. However, I didn’t let it get me. No tears, no feeling sorry for myself. I kept telling myself as the loud machines were cranking away and my Bob Marley CD played in the background, “You can do this, just do it and move forward with the plan.” I left behind my CD for the next folks and I hope it helped.
The plan worked. Two years after completion of the surgeries, chemotherapy and radiation, we decided to go for it! I went to the NYU Fertility Center and we scheduled an IVF transfer. We were so very lucky. At seven weeks we heard not only one heartbeat, but TWO! Twins! The plan worked. Our twin sons, Hunter and Jackson, were born on January 9, 2007. They are now eight years old and have been the lights of our lives. They were our little snow babies, our hope for years. We always joked when we paid for the embryo storage that we were paying for our future children’s rent. Without this plan, this preservation of precious life, we would not have our special boys. I went into premature, chemotherapy-induced menopause after they were born at age 34. They truly are our miracle babies!
I’ll skip ahead a few years, a cancer recurrence and three more surgeries to the present day. I am alive and healthy, continuing to kick cancer’s butt and have yet another part of the baby story to share. In 2013, we decided to have our remaining two frozen embryos sent to Maryland to be thawed and then potentially re-frozen. If they were viable and could be transferred, we decided to pursue the help of a surrogate to carry the baby, since my surgeon did not want me to try and carry a baby, stirring up my immune system. None of the remaining five embryos survived. Yes, we were sad and we cried, but we pushed forward with another plan and didn’t give up hope. We met with both Shady Grove Fertility in Rockville, Maryland, and Dominion Fertility in Fairfax, Virginia, both of which are top fertility centers in the country. Again, we came up with a plan. We would use an egg donor and a surrogate. Two different women would help us pursue our dream of another child — a brother or sister for our boys.
I will never forget the day I knew I found the one, the woman who I would soon refer to as “Hope.” She was my perfect match. As Lisa See, one of my favorite authors wrote, she was “my same.” Tears of joy were pouring down my face the day I read her profile online. Though nearly 20 years separated us, we both love to run, play basketball, cook, play piano and travel. We both loved sorting our Halloween candy as children and consider our moms our best friends. When I read about the one thing she is most proud of, “her ability to persevere despite adversity,” I just lost it! It was meant to be, part of his master plan for our lives. I truly believed it. I still do. The next step was to find a surrogate. I knew this would be one special woman. I knew that we would be connected forever as soul mates. We just needed to start looking, praying and never give up hope.
Luckily for us, we were introduced to an angel. A friend of a friend heard about our story and offered to be our surrogate. Oh, what a journey! Tests, appointments and shots, she never gave up hope and never complained. She was such a trooper! It was the most wonderful experience to be there for every appointment, every test and at the moment of each transfer, to witness the spark of light that would hopefully, become our baby. During every transfer, I held her hand, cried tears of gratitude, joy and hope, and prayed. The first two transfers were unsuccessful but we didn’t give up hope and the doctors didn’t give up hope. The third time was a charm! It finally worked! We were pregnant!
The pregnancy journey was so amazing. To share the journey with another woman, to participate in the delivery and to be there when our daughter, Sawyer Denise, was born was the most amazing, wonderful, awe-inspiring moment of our lives. We will never forget it as long as we live. Our beautiful daughter was born on March 26, 2015. She is our angel, our hope, our little miracle. All of our souls are connected for an eternity by an invisible thread.
There is so much more to preserving fertility than freezing eggs. If you or someone you love has been diagnosed with a fertility-threatening diagnosis, I urge you to consider learning about how you can preserve your fertility, and “buy hope.” One day, your dream may also come true. To learn more, you can contact NYUIVF.com or DominionFertility.com for medical and financial advice.