In the spring of 2019, I was just coming out of the fog of postpartum and beta launching my sauce company, not just co. I’d quit my full-time job to focus on my family and my business and the weather had turned for the better in Boston. I should have been feeling great—or at least solid—as I got my feet under me as both a mom and a business owner.
Except that I wasn’t.
All spring, and increasingly over the summer, I felt a nagging feeling that something just wasn’t right with my daughter. Although she’d always been a challenging sleeper, she’d been happy and engaged during the day—hitting milestones on or ahead of time, making us laugh, eating well, growing quickly. By June, she’d regressed from sleeping through the night to multiple wake-ups.
At her nine-month appointment, her pediatrician reassured me that the sudden drop in growth percentile was probably just “leveling out” (which did little to reassure me as my husband is almost 6’4” and I’m 5’11”). By July, I was calling the pedi office regularly—unexplained fevers, constipation and diarrhea, and the most disconcerting, a black eye.
As each incident was explained away by a virus, the nagging feeling increased.
In September, my daughter developed a lazy eye, for which I called and emailed the pediatrician yet again. That finally got her attention and led to an escalation: specialist appointments, eventually a trip to the ER and a diagnosis of stage IV neuroblastoma, a cancer of the central nervous system most commonly found in children under five. Like many cases of NB, by the time it was caught it had metastasized over 75 percent of her tiny baby body.
The six months of treatment that followed are both seared into my memory and a blur: hundreds of appointments, chemo, scans, getting blood transfusions, surgeries and anesthesia, all while trying to keep her life as normal as possible and get my business off the ground. She was declared NED (“no evidence of disease”) in March 2020.
Now five, she remains cancer-free and her life is otherwise normal.
I am so grateful that she has not shown any long-term side effects to date and remembers very little from the experience.
I, however, am not so lucky: Parenting a child with a stage IV cancer diagnosis is something that will never leave me.
The things I’ve taken from this experience haven’t been all bad though and I’ve grown and morphed in several ways that have shaped me for the better in every way: as a parent, a wife, a woman, and a business owner.
Instinct
The first is trusting my gut. I’m not a very woo-woo person, but I do believe unequivocally in instinct. In my view, instinct is your brain’s way of compiling dozens – if not hundreds – of small, individual, sometimes disparate pieces of information and laying it on top of your experience. It’s not a substitution for science or analytics, of course, but good, practiced intuition is vital when making decisions between options that do not have a clear, analytical winner.
Do I select this medical team or that medical team?
Which treatment protocol is the right one?
Which strategy is right for my business?
Which home/school is best for my family?
Trust in myself has informed so many of my decisions over the last few years and absolutely nothing can replace it.
The most obvious example was recognizing that something was not right with my daughter.
Despite being a first-time mom (which the pediatrician’s office made note of on at least one call, implying that I was overzealous) I just knew she was sick and that gave me the confidence to continue following up.
Perseverance
That leads me directly to the second learning: to be perseverant. Nothing—absolutely nothing, no amount of education and no amount of experience—takes the place of perseverance. The truth is that if I had not trusted my gut and called my daughter’s pediatrician time after time, insisting on follow-up, sending photos, and ignoring the suggestion that I was just a nervous first-time mom, I’m not sure my daughter would still be here.
This is true as a business owner as well. Rarely do proverbial doors just open on their own for young businesses—especially those that are women-founded and women-led. I take great pride in knowing that a respected industry friend once called my co-founder and me, “the most tenacious operators I know.”
What do perseverance and tenacity mean practically? A willingness to try and to follow up again and again, a willingness to fail and pivot, and a willingness to turn rejection into a fresh opportunity. I haven’t always been so bullish, but loving my daughter more than I cared what other people thought of me pushed me outside of my comfort zone. I’m so grateful that it did.
Confidence
My third takeaway was—perhaps perversely—a healthy boost in self-confidence. Initially, it was very hard not to blame myself. I spent a lot of time asking myself whether we had chosen to live in the wrong neighborhood, or I’d used the wrong shampoo, or that I’d somehow, despite having a background in food and nutrition, I’d fed her the wrong things… or or or.
It wasn’t until her attending physician – a highly respected pediatric oncologist and mother of four herself—looked me in the eye and promised me that it wasn’t my fault, that I was able to start to believe that I was doing everything I could.
As we moved forward and got our bearings, her team also treated my husband and me as part of our daughter’s care team and gave us as much information as we wanted.
As her advocate and voice, I started trusting myself and asserting myself more, which has spilled over into the rest of my life as well. As I did with her cancer treatment plan, I always make sure I’ve learned what I can and know the right questions to ask so I can speak with confidence and authority. I’m never the loudest or most chatty person in a room, but that’s perfectly ok with me now. I no longer need the external validation that I did as a younger woman and that holds a lot of power.
Calm
Finally, though my husband might disagree that I’m calm, I no longer sweat the little things with my girls. Bumps, bruises, fevers, some new behavior, more or less appetite… These things don’t phase me much at all anymore. I have a little checklist I run through before I even consider a call to the doctor’s office.
Is this symptom new? Is it serious? Can it be explained by something simple? Does it improve over time? How does this sit with me?
Asking myself these questions gives me a fresh perspective that isn’t based on a knee-jerk reaction. It also means that when things get stressful with work I can stop and remind myself that my girls are healthy and no matter what else happens, I have them and I will get through it.
I would never choose to go through the experience of watching my daughter get sick with cancer, get diagnosed, get treatment, and fight to get healthy again. Watching her suffer was the hardest thing I’ve ever done. But it wasn’t all a waste either and I am very proud that I’ve been able to grow and change and become a better, more confident self.
