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Personal Stories
How I Balanced Work – and My Daughter’s Cancer Diagnosis
How I Balanced Work – and My Daughter’s Cancer Diagnosis
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Susan Wendel is a Scientific Director of Portfolio Management at Johnson & Johnson. She has been named the Johnson and Johnson Working Mother of the Year in conjunction with the 2015 Working Mother 100 Best Companies for Women report. Below, her story.

Back in 2009, my daughter Charlotte was a happy, playful and seemingly healthy seven-year-old when the four of us—Charlotte, her father, her 13-year-old sister, and I—headed out to an animated movie my girls were dying to see.

It was just a normal evening out near Philadelphia, where we lived, but during the movie, Charlotte began slurring her words. We went straight to the hospital.

Over the next twelve hours, Charlotte lost her ability to stand, to sit up, continually losing capabilities until eventually she became unconscious and was admitted to the hospital’s intensive care unit. We had no idea what was happening; it was terrible and terrifying.

We didn’t know it at the time, but we were watching her immune system produce antibodies against specific receptors in Charlotte’s brain which damaged those brain cells. Her immune system was, for some reason, attacking her brain.


A Terrifying Diagnosis

At first, the doctors couldn’t tell us exactly what was wrong with Charlotte, but within five days, we learned two things: She had an ovarian teratoma, a type of germ cell tumor. And what we were seeing was a secondary immune response, caused by the cancer, called anti-NMDA receptor encephalitis.

If you’ve read the book, “Brain on Fire: My Month of Madness,” it’s the same disease the author, Susannah Cahalan, a young reporter who describes her descent into what she thought was mental illness, contracted.

Anti-NMDA receptor encephalitis is still a little-known and little-understood disease. We don’t know what causes it or who is at risk, and pediatric cases like Charlotte’s, which are set off by a malignant tumor, are a small minority.

Given the gravity of her condition, Charlotte’s doctors moved fast. The ovarian teratoma was removed within seven days, and her care team thought she would be in rehab within a few months. But she didn’t stabilize.

To our devastation, her body behaved as if the tumor were still there. She couldn’t breathe on her own—she was on a ventilator. She was fed by a stomach tube and was incontinent, in a total vegetative state.

Charlotte also couldn’t see; her eyes rolled in different directions. Sometimes she seemed able to hear, as she’d move her head toward sounds in the room. She couldn’t communicate at all.

It was 10 months before Charlotte would stabilize enough for me to bring her home. By then, my marriage had, sadly, fallen apart. I knew it was up to me to help my daughter get back on her feet.


Making Recovery Work for Both of Us

I desperately wanted to see Charlotte when I came home from work; I wanted to be able to hug her and talk to her every day; I wanted her to smell my cooking and spend time with her sister. But what I learned was that it’s incredibly hard to bring a child like Charlotte home.

The standard path path for chronically ill, medically fragile children like Charlotte, is a pediatric nursing home. In order to avoid that and care for Charlotte at home, I essentially had to run a hospital out of my house, with a ventilator and a feeding tube and 24-hour nursing care, not to mention extensive renovations.

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As a single mom, it really wasn’t feasible for me to take advantage of any of the time-off options Johnson & Johnson offered me. Also, I lead teams that develop the chemistry and manufacturing processes for new drugs that the company brings to market —the kinds of drugs that could help kids like Charlotte. With 25 years of experience and four years under my belt at J&J, it was important to me to continue leading my teams and helping the company to develop drugs for patients with unmet medical needs.

What I was able to do was take advantage of a flexible work arrangement. Over the six-year period since the onset of Charlotte’s illness, I’ve worked from the hospital. I’ve worked at Ronald McDonald house, where I stayed when she was in the hospital. And I’ve worked in my car, while she was receiving physical therapy. I could not have gotten through Charlotte’s illness any other way. Fortunately, this was also part of J&J’s policy: To be able to work not just in an office.

I had an amazing support system. When a company makes accommodations like these, your loyalty is cemented. There’s almost nothing you wouldn’t do to stay.

Charlotte was in the hospital for the remainder of 2009 and most of 2010; during 2011, she received one week of chemo per month. I had to coordinate drivers to and from appointments—nurses are not allowed to drive, because they have to care for the patient during the drive. I had to be on hand with new nurses when they came on board, making sure the transition was smooth and that they understood how to care for my child. I had to stay near the hospital or at home as required.

Yet these years were successful, smooth work years, and, during that time, my teams made significant contributions to the development of several new drugs and launched one new drug. Personally, I came up against no objections and had the full cooperation of those I confided in at work.


Getting Back On Our Feet

Charlotte began to regain consciousness in June of 2012, and it was very gradual. She didn’t take her first steps until December of that year; her muscles were completely atrophied. She woke up with no memory of anything that had come before.

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Today, even though she has academic and developmental delays, she is mainstreamed with the rest of the seventh graders. Her sister, who absolutely rose to the occasion and took on quite a lot of Charlotte’s care, is now a sophomore in college majoring in pre-med.

As for my own journey, it changed my life, in more ways than one. As a result of what we experienced, my friends and I founded a nonprofit, Happy 2 Be Home, which helps families make the home improvements they need to care for a chronically ill child. Those home improvements are very expensive, and the regulations are a very high hurdle to surmount. I was blessed with friends and family, a house, generous donations and the means to accomplish what I needed to. Not everyone has that, which was what inspired me to start this organization.

Now I’m happy to tell my story so I can fund the work we do there: Today, just four years after launch, we’ve helped more than 20 families pay for the modifications they needed to bring their kids home. We’ve granted more than $250,000 toward those modifications, and we continue to help chronically ill children live at home, where they can be safe, receive the best care possible and feel the love that only a family can provide.

Today, I still lead my teams at Johnson & Johnson, and Charlotte continues to improve. I feel like the trials we’ve faced have also provided incredible opportunities. I’ve seen firsthand how everyone from your friends to your employer will rally around you to help prop you up during difficult times. Now my goal is simple: To do the same for other families a lot like us.

Susan is Scientific Director for Janssen Research Development in the Johnson & Johnson family of companies. She is also a mom to two daughters, ages 19 and 13. Inspired by her journey with her daughter’s diagnosis, Susan started Happy 2 be Home, a non-profit organization that enables families to provide a suitable home environment for children with chronic, long-term, multiple disabilities to enhance their quality of life. In the past four years, Happy 2 be Home has raised more than $250,000, some of it by Johnson & Johnson through their employee giving program. Susan continues to serve on the Board of Directors for Happy 2 be Home and is enjoying her latest challenges at work.

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