Make Today Count
Words of Wisdom from the Mom of a Cancer Survivor
By Lori Williams
Cancer has been a specter of stress in my life for the past twelve years. When I was in my early twenties, my mom was diagnosed with breast cancer. My mom has always been my best friend. As an only child, she and I have a very close-knit relationship. She was diagnosed with breast cancer in 2010, went through major surgery and radiation, and was cancer-free for a year or so. In 2012, the cancer returned. It was a very scary time, as we didn’t know what her outcome would be. Thankfully, after months of radiation, she was cancer-free. She remains cancer-free to this day. However, my fear that the cancer might return has always haunted me.
So, you can imagine my abject horror when a doctor looked me in the eyes in the Children’s Hospital of Wisconsin Emergency Department and said,
“Your son has cancer.”
It’s one thing to experience cancer as the daughter of a cancer patient, and another thing entirely to hear that your own baby has this awful disease.
Following that bone-chilling diagnosis was a thirty-five-day hospital stay. Right away, my son, Thomas, was admitted and began treatment for a very rare form of leukemia. He was only two years old, his baby sister was a mere 3 months old, and suddenly my husband and I had to instantly figure out how to care for a child in the hospital fighting a life-threatening illness while caring for our infant daughter, as well as keeping my husband’s business afloat. Here are some ways our time in the hospital changed me and gave me compassion and insight into the reality of all that cancer families truly go through.
Parental Guilt
We often hear the term, “mom guilt” thrown around a lot these days. Can you begin to fathom the depth of my own “mom guilt” when my child was fighting cancer? All I wanted to do was be at his side and do everything in my power to help him win his fight. This came at the cost of spending time with my infant daughter, Verna. It was not feasible to care for an infant while caring for a 2-year-old who is hooked up to an IV pole, taking many medications, and needs active supervision like any other 2-year-old.
Even though Thomas was sick with cancer, it didn’t break his stride. On the days where he was feeling well, he would zip through the hospital hallways, moving so fast I had to run to keep up with him. This was all while he was hooked up to an IV pole with a central line directly connected to his heart. If I didn’t keep up with him and he managed to get the line tangled or worse yet, accidentally rip it out, it could have been catastrophic. This was a major reason I couldn’t manage an infant and my son at the same time.
I stayed at the hospital Monday through Friday so my husband could work, and he took over for me on the weekends. It absolutely ripped my heart out to leave Thomas, but I needed to step away to be with our daughter. When I was at home with her, I longed to be at Thomas’ side. I worried that if his prognosis worsened, I was missing out on precious moments with my son.
When I was at the hospital, I grieved the time that I wanted to spend with my infant daughter. I was an elementary school teacher before having kids, and I know all the research inside and out about the importance of the relationships that children establish in their first year of life. I was absolutely sickened that I couldn’t be there with my daughter as her primary caregiver. I maintained my connection with her by seeing her once a day when a grandparent or other caregiver could bring her to the hospital.
With an extra set of hands, someone could be with Thomas so that I could spend time with Verna. However, this didn’t take place until two months into Thomas’ treatment because COVID restrictions were still in place and no visitors were allowed. I kept breastfeeding and pumping so that my daughter could stay connected to me through her feedings at least. It was a labor of love pumping three times a day while caring for an older child fighting cancer.
Emotional Baggage
A cancer diagnosis is terrifying for any parent. With Thomas’ specific type of cancer, we were required to stay in the hospital for upwards of a month at a time during treatment. The oncology ward became our home, and the children being treated there as well as their family members became our unofficial family: the best family you never want to be a part of.
I have always been an extremely empathetic and sensitive person, ever since I was a little girl. I feel my own emotions very deeply and I often have a hard time “staying in my own lane” emotionally, so to speak. It was extremely difficult for me, not only to watch my son going through his cancer treatments, but to see so many other families walking the halls going through the same. You don’t know what they’re up against, the kind of outcome they’re expecting, or their own personal struggles. You are in the trenches with these people fighting the fight of their lives for their children.
The truly chilling part is that you don’t know who is going to come out of the trenches and who won’t. It’s extremely difficult struggling with survivor’s guilt when my son is doing so well, and so many other families whom I have come to know and love have lost a child to cancer. Living and breathing the hospital environment 24/7 for seven months straight traumatized me.
It was emotionally assaulting as a highly-sensitive person to live in those walls and see what I saw all the time. I still have PTSD in medical situations. The birth of my third child was horrific for me, not only because I barely made it to the hospital in time, but because of the very real PTSD I experienced being back in a hospital setting, with doctors and nurses frantically running around and poking and prodding me like they had to do to my son.
Gratitude
I do not take a single day for granted. Life can change in an instant. Living in the hospital for seven months, being separated from my infant daughter, being involuntarily but necessarily separated from my spouse so that we could keep our livelihood afloat, watching my two-year-old go through chemo, lose his hair, develop a full-body rash because of the vicious medication, throw up in the middle of the night countless times, and fight cancer has truly changed me.
I will never forget the day that Thomas and I were walking the halls and he looked out the window. He saw some metal pipes on the roof of the building that were part of the hospital’s HVAC system. They were cylindrical and big, and to him they looked like the slides at the park. He said to me, “Mama, park!” My heart absolutely shattered. I wanted more than anything to be able to do normal things like take my son to the park.
To this day, I probably take my kids more places than any normal and sane parent does. We go on outings nearly every day to the park, library, zoo, museum, you name it! Spending so much time in the hospital was absolutely awful but it saved my son’s life and gave me a new lease on life! I am forever grateful to the doctors, nurses, hospital staff, and everyone who took care of us.
In 2022, we welcomed our third child into the family. Not even two months after her birth, we bought a home that needs a million updates. We had always wanted a large family and to own a larger home, but we were waiting for “the right time.” Let me tell you, folks. There is no “right time.” The right time is now. Life is short, so don’t waste it!
As we move into the holiday season, please, I beg of you, cherish your time. Cherish the time with family and friends. Don’t sweat the small stuff. Make 2024 the year that you take the leap and do whatever it is you have been waiting to do. Time waits for no one and we are not guaranteed tomorrow, so make today count.
To learn more about St. Baldrick’s and its mission to Conquer Kids’ Cancer, visit StBaldricks.org.
