My daughters’ lives, while growing up with a terminally ill mom.
By: Terlisa Sheppard and daughters, Alexis Sheppard and Alyah Sheppard
Edited by Barbara Bigelow
I started a scrapbook entitled, “My Life with Breast Cancer” so that I could leave an accountability of my breast cancer journey for my daughters to have at their disposal, especially after my death.
I was originally diagnosed with stage III breast cancer when I was 8 ½ months pregnant with my youngest daughter and my oldest daughter was only 2 years old. Even though my early-stage cancer diagnosis was extremely aggressive at the time, I did not feel the need to start a scrapbook journal until after I was diagnosed with metastatic breast cancer 3 years later. Because of my daughters’ young ages (only 3 and 5 years old) at the time of my mbc diagnosis, I felt that it was imperative that they got as much information about my illness as they could directly from me.
Since my breast cancer diagnosis was derived from my pregnancy in 1998, and my daughters were too young to understand much about my illness at that time, I decided to start my journaling with the photo that I had taken only two weeks before I was diagnosed with stage III breast cancer. I had no clue as to what I was about to be faced with in just a couple of weeks, as you can see in the photo. I was a happy-go-lucky mother of a beautiful little girl named Alexis, who had just turned 2 years old, and I was extremely excited about completing my baby registry for my soon to be born daughter, Alyah.
In 2001, I was hit with my first metastatic diagnosis, with metastases to my bones, lungs, and liver. At that point, my medical oncologist did not have much hope for me surviving so she told me to “Go Home, Quit Work, and Get Your Life in Order.” At the age of 34, I was retired from my job as an Accountant with the Department of Defense and sent home with the understanding that my life would be ending soon. Somehow, I just could not wrap my head around that whole idea.
Either way, I had to jump-start my “new” life in a way that I would live out the rest of my days, giving my daughters little nuggets on life that would comfort them or even prepare them for life after my untimely death. I proceeded to write my obituary several times to somewhat prepare for things to come. My thought process was to do whatever I could to lessen the blow for my daughters. As I mentally tried to plan for my death, my physical body just would not give in and somehow found the will to carry on.
It did not matter how sick I felt during those times of drastic, on-going treatments to extend my life, I still tried to muster any ounce of strength to be a normal mother for my girls. Not that I tried to hide my cancer diagnosis or hide how bad it was getting, because I did use every opportunity to explain it to them, in language they could understand for their ages. I just wanted to give them all of me, whatever I could, while I still had the chance. I knew going into this that my oncologist did not have much hope for me and I knew that the aggressive chemotherapy drugs, along with the compounding side effects were going to make me very weak, probably too weak to barely take care of myself, but I also knew that I had a strong will to be a mom as long as I was given breath in my body.
My amazing family were great allies, as well as my awesome friends. They all came in to assist every opportunity they got. My mom and sister-in-law were even live-in assistants at times, which was a gift from God. With everyone’s help, the girls were able to get to their different school, church, and extracurricular activities without missing a beat. My church family would even assist to make sure the girls were picked up for church and related activities. My little village came through for us in our most needed times and I will never forget that.
I would even take my daughters to the cancer center with me every chance I got. They had gone so regularly that they fell in love with “Tea-Time” which was an event set aside every Thursday afternoon for the patients to enjoy as they were getting treatments. We had beautiful teacups that were donated from all over the world and we enjoyed mouth-watering deserts to go along with the various, fresh brewed teas, which my daughters could not resist. After all these years, it is still an event that I look forward to and of course, I think of my daughters, who were once toddlers drinking tea with their pinkie fingers up and cherishing fond memories with their mother, which otherwise could have been some of their worst memories of me going to the cancer center so often. They are young ladies now but will always remember how Orlando Health Cancer Center made them feel incredibly special during Tea-Time.
I have miraculously made it through my fourth diagnosis at this point, with metastases to my bones, lungs, liver, spine, abdomen, and brain. Although my little girls grew up in a life surrounded by the cancer center, it has not been the worst experience for them. I do know that it has made them two of the most humbling, thoughtful, loving, and kind-hearted individuals that they are today. I did not have a specific guide to motherhood while facing a terminal breast cancer diagnosis, I just did what came natural to me. At the time of my first metastatic diagnosis, I did not even know anyone who was going through a metastatic diagnosis. I did not know of any support groups, nor did we attend any group counseling sessions. With what I know now, it would have been a great thing for us to be a part of some type of family counseling or support groups with others who were going through similar circumstances. I am so thankful to be a part of the METAvivor organization, which provides funding for metastatic breast cancer research and provides peer support groups to anyone interested.
Today, 21 years later, my youngest daughter just graduated college with a BS Degree in Accounting and my oldest daughter just graduated with a master’s degree in Business Administration, both with honors. I am one proud mom. Although I am still going through routine treatments to keep my cancer diagnosis stable, and I am pushing through daily aches and pain associated with metastatic disease, I still find joy in being a mom to my beautiful daughters.
Here’s my daughters’ account of living their life with a terminally ill mother.
Growing up with a terminally ill mom was not a mindset we were conditioned too. As kids, we still had normal experiences in life. In fact, we traveled a lot and got to see a lot of the country. The only thing that was different for us, were the visits to the cancer center and that our mom was disabled and retired most of our lives. We would often go to the cancer center, especially during the summer, to accompany our mother to different appointments and even teatime on Thursdays. After school, we would have home-cooked meals and we still got to be involved in all our extracurricular activities. Our mom was involved in our lives and was always there to support us in school. She was a highly active parent, despite her breast cancer diagnosis. We have enjoyed doing a lot of simple things with our mom, like spending quality time and just laughing together. We have fun going to the beach, cooking together, and watching sunrises and sunsets.
Growing up with a terminally ill mom was not extremely different for my sister and me. We still did many of the normal things that any young children would do. The main difference for us was the constant visits to the cancer center while my mom received her treatments. Whenever she was going through difficult times, we would try to massage her back or help in any way that we could while she was in pain. While fighting terminal breast cancer my mom still wanted to make sure we had a great life as kids. We were both young, so she wanted us to just be kids and do the regular things that kids did. We would still go on many road trips to learn about world history and experience the world, go to the beach, go out on day adventures and any other activities that allowed us to spend time together and laugh and enjoy each other. I love that we were still able to have that great connection and tight bond with my mom even during all she was going through as a breast cancer patient. My mother has always been there for me, and I can talk to her about anything. She is amazing and has always been such a huge inspiration for us and for so many other people.