The Weight
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I was back to work full time at Kenway for about a week after a year of working part time, full time and to be honest, a lot of “no time.“ I walked into our 2018 first quarter all company meeting with a strong assumption about how the day would progress. This month marks my seventh year at Kenway, so I’ve been a part of my fair share of these meetings. My expectations quickly changed when my co-worker, Noellen, kicked off the meeting by sharing her story about the weight on her shoulders.
Noellen talked about how there are times when she has a difficult client project coupled with pressing responsibilities at home that make it difficult to give 100% of her focus to work. To summarize her eloquent monologue, she talked about how Kenway’s Why, which is to help and be helped, positively impacts her life. In short, she greatly appreciates that Kenway employees help each other out. There have been a few blogs about this in the past. You might remember The Why from such blogs as Finding the WHY at Work and Culture Comes First among others. It hit me hard. She was right. One of the best benefits of working at Kenway is the people. Top to bottom, the people at Kenway are aligned with our Why and want to help. Whether it is helping your business solve a business problem, helping each other on a project or teaching each other new skills. Now I want to share my personal Kenway Why story….
My wife and I welcomed our first child, Emma, to the world in December of 2016. I took a few weeks of paternity leave to help make sure we were all settled at home into our new routine, our new life. Emma was a happy and healthy baby that slept well and ate well. Eventually my wife’s maternity leave ended, and she went back to work. Up until this point, the weight on my shoulders was what you would expect from a new dad in a family with two working parents. But then things changed.
Baby Emma started getting sick. One doctor visit turned into two, which turned into three. We took Emma across the street from the doctor’s office to the ER. That normal “dad weight” was shifting as I moved the car from one parking lot to another. We waited, not sure what was coming next. Finally, the doctor had news. I don’t remember the look on her face. I just remember what she said, “You’ve got two brain tumors. We are finding a bed for you upstairs.” The shifting weight on my shoulders quickly turned into an elephant.
At three and a half months old, Emma fought through two brain surgeries, two failed extubations, and a tracheostomy. I am fortunate that I had my wife by my side. When the lab results came back, Emma was diagnosed with Atypical Teratoid Rhabdoid Tumors (AT/RT), before she turned four months old. That weight I’ve talked about, well now it felt like two elephants.
We moved into Ann & Robert H. Lurie Children’s Hospital of Chicago on May 4th, 2017. We met with the Hematology/Oncology team (Hem/Onc) and learned that her disease is treatable, but it affects only one in a million children. You always think your child is one in a million, well mine was, just not like I expected. After two brain surgeries removed all visible signs of her tumors, we started to see our little girl smile again, which helped ease some of that weight. A now stable Emma was cleared to start the first of five rounds of chemo, while we learned how to help Emma cope with the awful side effects of the drugs. Finally, at the end of June, after nearly three months of living, eating, and sleeping in a hospital, we went home as a family.
Emma fought through chemo bravely. Her treatment schedule was long and difficult, including two induction rounds, three rounds of high dose chemo, and three stem cell transplants. She bounced back from each round of chemo faster than the previous and genuinely shocked the team with her quick recovery, not to mention the grace she showed with each drug, test, and fever. The doctor that started the program at Lurie said to me in an elevator one morning, “Your daughter is incredible.” Emma finished her chemo on Halloween and rode out of the 17th floor dressed as a strawberry after delivering candy to the staff. We hoped that would be our last time staying with our Hem/Onc friends and adopted family and looked forward to long stretches at home. Before Thanksgiving, it was time for the first post treatment scans, but we didn’t get the news we wanted. Her larger tumor was growing back and quite rapidly. A week before Christmas, Emma underwent her third brain surgery and established a plan to start a new protocol of treatment on January 2nd.
On February 2, 2018, Emma lost her battle with AT/RT. She was 13 months old and the strongest person I’ve ever met. However, her story fortunately doesn’t end here. Doctors removed her tumor and saved it. There was enough tumor to share with the team at Northwestern, a tumor bank in Philadelphia, and to use in a new clinical trial that the team at Lurie has pioneered. Someday, families will be able to hug their children for years to come, because Emma came first.
My wife and I learned a lot during our stay in the hospital. We learned how to manage life with a very sick child. We saw what cancer families go through to cure their children, and we witnessed what these brave kids go through to fight their disease. We’ve made it our mission to support these families and the organizations that treat pediatric brain tumors. We’re raising money to help Emma’s doctors get closer to a cure. The National Cancer Institute provides only 4% of its budget for pediatric cancer. These researchers need more than 4%. Emma’s Memory will change that. You can help us raise money for Emma’s Memory through Lurie Children’s Hospital and find out more about us at EmmasMemory.org.
How does this story relate back to Kenway, our Why, and our wonderful, helpful people? Well, during the time that passed in the paragraphs above, I didn’t work. Sure, I checked my email and would help where I could but nothing close to the 43-hour work weeks I committed to for the year. As the year progressed, I never got back to full time. It didn’t fit with my weight, and Kenway couldn’t have been more helpful. I was never asked when I was coming back or even if I was coming back. I was given full freedom to focus on my daughter and on my family. Like Noellen said at that Q1 meeting, the Kenway consultants took the weight of my client and internal work off my shoulders when I couldn’t bear it. I’m incredibly lucky to work for a company that values me and my family. Too often, you see a company tout guiding principles on their website but then not always live them. Kenway lives them, and not that I doubted it before, but I understood even further when Kenway did “welcome and respect the uniqueness of each individual,” which is one of our guiding principles. I was unique, my situation was not normal. A while ago, Kevin Sechowski wrote, Why I am not leaving Kenway Consulting. This is my story. This is why I’m not leaving Kenway Consulting.
2024 Update
May is Brain Tumor Awareness Month, so I wanted to share what we’ve been up to in the last 6 years.
Since I wrote this blog in 2018, our family and I have been overwhelmed by the outpouring of love and support from our community, friends, and colleagues at Kenway Consulting. The Kenway team has stood with us, showing unwavering support. We recently updated our corporate goals. I was excited to see one specifically tailored to philanthropy.
Positively Impact Our Community Philanthropically: Foster a culture of practicing the means necessary to positively impact the communities in which we operate.
My wife, Sadie, and I have been dedicated to raising funds for Lurie Children’s Hospital since 2018. We organized Emma’s Memory to honor Emma’s life and to join the community together to help find a cure for pediatric brain cancer. Research for pediatric cancers, and pediatric brain tumors specifically, remains highly underfunded and under-recognized by the medical community. Doctors rely heavily on philanthropic efforts to fund their research.
Currently, childhood cancer research still receives only 4% of federal cancer research funding, and since 1980, fewer than 10 drugs have been developed for use in children with cancer, compared to 23 drugs developed for adult treatments in just one year. Our mission is to help find a cure for pediatric brain tumors so families can hug their children for years to come. We hope you will join us in raising awareness and funds towards our goal.
In both 2022 and 2023 Kenway has been a sponsor of Run for Gus and with the help of fundraising by supportive colleagues, raised a total of $13,496.22.
In addition to sponsoring Run for Gus, Kenway hosted a fundraiser after our Q3 meeting in 2022, where the team came together over food and drinks to support Pediatric Cancer Month in September. Together, we raised an incredible $14,000 for pediatric cancer research.
Thank you to everyone who has stood by us and supported our cause. To date, we have raised over $400,000 to support critical research and care for children battling cancer. Together, we can make a difference and bring hope to families facing pediatric cancer.