Sometimes it takes a catastrophic event for us to sit back and reflect on what is really important in life. That event happened for our family on December 26, 2014 when we were told that Megan had Stage 4 Alveolar Rhabdomyosarcoma. Since we received that devastating news, we have learned some valuable lessons about life. We have discovered that there is nothing more important than family. We have learned the importance of living in the moment and winning each day as it comes. We have learned the importance of not waiting for the storm to pass, but learning to dance in the rain. We have also learned about the inherent good in so many kind and compassionate people who have reached out to support Megan during this arduous journey. Megan’s cancer diagnosis is something that no child or family should ever have to endure, but the journey has caused us to re-prioritize our lives and focus on what is really important. It’s too bad that it takes such an event for many of us to come to that realization.
Tragically, another of those catastrophic events occurred this week with the senseless deaths of 17 children in the Florida school shooting. I don’t want to dwell on the politics of this issue, because it seems that everyone is doing that, which only leads to more divisiveness and no real solutions. In trying to avoid the paralyzing politics, this tragedy caused me to reflect on the many areas of our society where we have to do better by our kids. The lives of those 17 victims were invaluable and irreplaceable; just like the lives of the 1,800 children who die every single year from childhood cancer. If we believe that children are our most valuable resource, and we believe that our children are our future, then we all have a responsibility to keep them safe from violence, disease, and any other danger to their well-being. Our kids deserve more from the adults who are charged with protecting them.
As Megan has traveled her personal journey through cancer, she has become increasingly aware that our children are the forgotten victims of the disease. While adult cancers receive the lion’s share of research funding by the Federal government, our kids are left with only 3.8% of that funding dedicated to researching the many forms of pediatric cancer. That’s why our kids are being treated with chemo treatments that are over 20 years old. It’s why many of the treatments our kids receive are actually adult treatments that were never intended for use on the fragile bodies of children. Megan is tired of watching helplessly as her friends across the United States and the world continue to suffer and die due to a lack of effective and appropriate treatments. Since she believes that the decision-makers are not looking out for her and her friends, she has decided to take matters into her own hands. She has made it her passion to advocate for childhood cancer awareness and the desperate need for increased funding to support the research needed to develop new and effective treatments for childhood cancer. Our kids have to stop dying!!!
Megan researched where she should focus her fundraising efforts, but she quickly became concerned about the administrative overhead that is inherent in many not-for-profit organizations. She wanted 100% of the money she helped raise to go towards the direct research for cures for childhood cancer. As a result of her research, she finally connected with Dr. Walterhouse at Luries Children’s Hospital in Chicago. He is working on very promising gene research that could make a significant difference in the treatments for Alveloar Rhabdomyosarcoma and Ewings Sarcoma. Megan has already delivered one check to him for $13,000, but she will not be satisfied until a cure is found and no more kids have to go through what she has endured. Megan believes that no more children should live their lives under the terror of childhood cancer.
Today, Megan took another step forward in her fundraising efforts by setting up a “Circle of Friends” webpage through Luries Children’s Hospital. Her personal page provides a safe and convenient online opportunity for supporters to donate money to her cause. Each donation is fully tax deductible and 100% of each donation will go directly to support Dr. Walterhouse’s important research. Megan is so excited to support childhood cancer research through her very own fundraising website. I know she would appreciate anything her “Team Megan” supporters can do to help her end this nightmare for so many children. In our country, 43 kids each day learn the devastating news that they have childhood cancer, and five children die each day from the disease, but if Megan has her way, that will soon change. As Megan likes to say, “Together we can knock out childhood cancer”. Here is a link to her Circle of Friends fundraising page.
Even though Kenzi is away in Madison for the second semester of her freshman year at the University of Wisconsin, she and Megan still communicate everyday. Kenzi sent Megan a Valentine’s Day gift, and even though she couldn’t be here in person, she FaceTimed Megan to give her the gift “in person”. As you can see, Megan was pretty thrilled to get her own Bucky Badger stuffed animal 🙂
Kenzi also got me a ticket to a UW basketball game last week, and although it was a lot of driving in one evening, it was well worth spending an evening with her cheering the Badgers to an exciting victory over Purdue. Here is a picture of us at the game and another where you can see the student section has stormed the court after the game.
Kenzi also recently took the initiative to apply for a job while at school, and she was quickly hired by Panera, which is also where her friend Ellyn works. She had her first day of training this weekend, and will start working a couple days a week for the rest of the semester. Although we sure miss having Kenzi home with us, we could not be more proud of everything she is accomplishing in college.
Megan continues to gain more strength and stamina the further she gets away from her last chemo treatment. She has picked up two more classes at school, and is still going to musical rehearsal three to four times per week. Tonight, she is going bowling and having a sleep-over with a couple of her friends, and last night she had the thrill of going to a ballet in Chicago with Kim Scerine, Jamie Frazier and Emma Frantini. I’m not sure what Megan liked more, the ballet or all of the places they stopped for food 🙂 She was exhausted when she got home, but she said it was so much fun. Here is a picture of Megan just before she left and another picture of the four of them at the ballet.
The pace will continue to pick up for Megan as the musical is only three weeks away, but she is intent on making the most of each and every day. As she recently posted on one of her social media outlets, she has scans in a month, but she is not going to let it worry her because if she did, she would miss out on a month of living life to the fullest. Megan will never let cancer do that to her. Once again, if you want to help Megan end the nightmare of childhood cancer for all kids, please visit her personal fundraising page at http://foundation.luriechildrens.org/goto/teammegan and help her “Knock Out Childhood Cancer”. Our kids deserve the best future we can give them, and that means a life where they don’t have to worry about the nightmare of childhood cancer.
Until next week…