As Megan has traveled her six-plus year battle with Stage 4 Alveolar Rhabdomyosarcoma (ARMS), it has been amazing to watch her take her personal battle to a much larger stage. As Megan has valiantly fought for her own life, she has voluntarily taken on the similar battles being fought by other brave kids all over the country and the world. The more she learns about the uphill battle facing kids with this vicious disease, the more passionate she becomes in fighting for the cause. Of course she is angry that childhood cancer has been a largely forgotten disease by our Federal government and its leaders, but instead of wallowing in her own self-pity, she has made it her mission to make a difference. When Megan was first diagnosed as a 13 year old eighth grader, she was one of the shyest, most introverted young people you could find. However, as her passion for this cause grew, so did her determination, courage, and ability to be not only her own best advocate, but an effective and passionate advocate for childhood cancer fighters everywhere. Of course there are still times like the past five months where a relapse causes her advocacy work to slow down, but during the times she is feeling better, she is right back to spreading the word to anyone who will listen…and to those decision-makers in our Federal government who for some reason keep talking a good game, but take no action to save these kids.
Thanks to the assistance of so many people and organizations, Megan has now raised over $400,000 to support direct childhood cancer research. When choosing research projects to support, Megan always finds a method to provide direct funding to a doctor/researcher because she doesn’t want any of her funds to be siphoned off to administrative costs or other organizational expenses. To date, she has supported research projects focused on Alveolar Rhambdomyosarcoma at Luries Children’s Hospital in Chicago and through the Children’s Cancer Therapy Development Institute in Portland, Oregon. Most recently, Megan completed funding that allows CC-TDI to conduct pre-clinical trial studies on a drug, which was originally developed as a treatment for breast cancer, but the CC-TDI lab has found effective in stopping RMS from becoming immune to chemotherapy treatments. Megan’s fundraising efforts resulted in $214,722 which will fully support this promising research project that is currently underway. But of course…Megan is far from satisfied…
Dr. Charles Keller is the lead researcher at CC-TDI and over the past year, he and Megan have communicated quite frequently. I have also had the pleasure of talking with Dr. Keller on numerous occasions and he is really a remarkable scientist and an even better person. He has dedicated his life to finding more effective and less toxic treatment options for childhood cancer. In fact, CC-TDI is the only independent research lab I am aware of whose mission is completely focused on childhood cancer research. Over the past year, Dr. Keller has become an important source of information for Megan and her personal oncology team as Dr. Keller frequently communicates with Megan’s own oncologists. One thing I have realized during Megan’s Journey is how well childhood cancer doctors share and collaborate on cases. They all have one goal, which is to save young lives, and pride never gets in the way of collaboration between them. In the childhood cancer community, it is a common trait that I appreciate and admire.
Over the past month, Megan told Dr. Keller that she wanted to start raising funds for another research project focused on Alveolar Rhabdomyosarcoma. Megan’s previous project is going to be very long-term because it will have to go through not just the pre-clinical trial phase that Megan funded, but also through a full clinical trial phase that could take years. This time, Megan wanted a project that could provide some immediate hope and relief to current childhood cancer fighters like herself and so many of her friends. After much discussion, she and Dr. Keller landed on an ideas that is best explained directly from the text of her new fundraising page.
The goal of this project is to bring consumer (patient)-level participation and accountability to a new, strategic approach to developing, testing and prioritizing new rhabdomyosarcoma drugs for incorporation into cooperative group clinical trials. Unfortunately, many RMS patients do not have the luxury of time. Therefore, all studies will be focused on testing existing FDA-approved or already clinically-investigated drugs with the goal of repurposing them for quick transition to treat RMS.
Megan was excited about this because if a drug that is already FDA approved proves effective in treating ARMS, then the drug could quickly be repurposed to help current childhood cancer fighters much quicker. Of course, Megan still wasn’t satisfied, because she knew that Dr. Keller and his CC-TDI team rely on private funding and they are working on multiple projects at the same time. Therefore, Megan decided that she not only wanted to fund this research, but also fund the salary/benefits of a new full-time researcher whose only job would be to test these drugs. Therefore, Megan is very excited to announce that her new fundraising page is now live with the goal of raising $233,000 to fully fund this exciting new research project. Of course that is a lot of money, but I’ve also learned that once Megan sets her mind to something, it’s going to happen. I encourage everyone on Team Megan to take a look at her new fundraising page and share it with as many people as possible. This has the potential to make a difference in the lives of so many young people who are desperately searching for hope in the daily fight for their lives.
Speaking of fundraising, Megan is very excited that the “2nd Annual Team Megan Bugg Golf Outing” will be held on Saturday, June 12 at the Nettle Creek Country Club in Morris, IL. Last year, this event raised over $20,000 for childhood cancer research, and Megan is determined to increase that amount at this year’s event. Thanks to the generosity of so many people, all 40 golf foursomes are already filled, but if you want to be placed on the waiting list, please contact Tim Jezik at the number on the flyer below. The event also raises significant funds through a gift basket raffle held at the end of the golf outing. If you or your organization are interested in donating a gift basket, you can either direct message Megan on Facebook or contact Tim Jezik (number below). The event is also accepting hole sponsorships and other corporate sponsorships, so once again, please contact Megan or Tim if you are interested. Every dollar raised at this event will go towards Megan’s new fundraising project, which has the potential to save so many young and promising lives.
On Saturday morning, Megan was asked by U.S. Congresswoman Jennifer Wexton to participate in a Facebook Live roundtable to discuss Federal legislation aimed at providing more support for childhood cancer research. I had the pleasure of listening to these passionate childhood cancer survivors plead for more funding, and it was a very powerful and emotional experience. Of course, I was extremely proud of Megan for once again becoming involved in childhood cancer advocacy at the national level as she articulately explained her story and made her case. As usually happens with most all events like this, she didn’t get the opportunity to say everything she wanted, so I thought I would give her that voice here. Megan had prepared a statement on the fact that childhood cancer is not rare, but there was not enough time for her to articulate this message during the event. Here is her message…
One of the most common and misunderstood thoughts about childhood cancer is that it is rare and doesn’t impact many kids. This could not be further from the truth because everyday there are 46 kids diagnosed with some form of childhood cancer which is 16,790 children per year. Within that number, 1800 kids are failed by our country’s lack of attention to childhood cancer and they tragically lose their lives. Cancer is definitely not rare because it is the leading cause of death by disease for kids. The number one cause of death in children are accidents and second is childhood cancer. In the past 40 years, the number of children diagnosed with leukemia has increased by 35%. If anything, this disease is becoming even less rare.
It is true that more adults get breast cancer and prostate cancer each year, but this is where you have to consider productive years of life lost. The average age that an adult is diagnosed with cancer is 66 versus the average age a kid gets cancer which is 6. Therefore, although tragic, a person with prostate cancer on average loses 10 years of productive life. A person with breast cancer on average loses 18.8 years of productive life. Compare that to a victim of childhood cancer who loses a staggering 68.3 years of productive life. Through social media, I have met so many amazing childhood cancer fighters. Unfortunately, over the last six years childhood cancer has taken 18 of my friends. Those 18 young lives accounted for 1,229.4 years of productive life lost. When you think about childhood cancer in terms of productive years of life lost, the disease is definitely not rare. In fact, if we were able to cure childhood cancer, it would be the same as curing BOTH breast and prostate cancer in terms of productive years of life saved. But for some reason that doesn’t seems to make any sense, the government spends more on researching cures for just prostate cancer than for all 13 types of childhood cancer combined. The National Institute of Health spends about $5 billion annually to research all types of cancer, but have decided children are only worth 3.8% of that huge amount of money. Given that so many precious years of life are at stake, why aren’t we doing more?
On Thursday, Megan started her 7th round of the current experimental chemotherapy treatment she is on for her 4th relapse. Thursday marked Megan’s 131st week of total chemotherapy treatments. Although she is tolerating this treatment pretty well, each passing weeks results in her taking just a little bit longer to bounce back. She ended up sleeping most of the day on Thursday, and on Friday morning she couldn’t make her way out of bed until almost 11:30 a.m. However, by Friday night she was feeling better. Although Megan dreads each week of chemotherapy, this week’s treatment was made a little easier because her friend LeAnna had come to visit her.
Megan met LeAnna at Curefest in November, 2020 and they have been fast friends ever since. LeAnna has never had childhood cancer, but she has become a passionate advocate for the cause. She is in college to be a Child Life Specialist and also runs an organization that provides gift baskets to childhood cancer patients. She also was the mastermind behind getting Saturday’s Facebook Live event organized. Since Curefest, she and Megan have communicated consistently, so when Megan heard that LeAnna wanted to come visit her for a few days, she was ecstatic! LeAnna flew in from her home in Richmond, Virginia on Monday morning and went back after Megan’s chemo treatment on Thursday. To say Megan had fun would be an understatement. The best way to show how much fun she had is through these pictures.
This Thursday, Megan heads back to CDH for another round of chemotherapy. In the meantime, she plans to continue fighting for something bigger than herself. Today she is fighting for the 46 kids who will find out that they have childhood cancer. Tomorrow, she will fight for the next 46 kids, because to Megan, these kids deserve so much better than we are currently giving them. Make no mistake…childhood cancer can be cured. We just have decide that today’s 46 kids are worth it. Megan thinks they are…do you?
Until next week…