The Final Blog Post — Megan’s Guiding Hand

October 2, 2022

Between Childhood Cancer Awareness Month and some major life changes for our family, I haven’t had the chance to post here in a little over three weeks. During that time, I have been posting over on the Team Megan Facebook page about all of the events and activities the Megan’s Mission Foundation participated in to further Megan’s dream of ending childhood cancer. As I reflect back on the month of September, there have been so many times when I have felt Megan’s presence so strongly. We have accomplished so much over the past month while also going through an important life transition of our own, but through it all, I believe that Megan has been carefully guiding us through every step of the path. She was always so wise for her tender age, which is why our family has been allowing her guiding hand to lead us down the road we are currently traveling. She always knew just what each of us needed, and over the past few weeks, we have relied on her more than ever. However, before I get to the three of us, I want to share what we accomplished during Childhood Cancer Awareness Month, which was always the most important month of the year for Megan.

When Megan was still with us, she was always relentless during the month of September in advocating and raising funds for childhood cancer research. When she wasn’t even strong enough to be doing so, she would attend events and speak to anyone who would listen about the dismal plight facing victims of childhood cancer. To honor her legacy and continue with the goals of the Megan’s Mission Foundation, we did our best to carry on all of the events that Megan used to facilitate. We started with her annual partnership with Ivory Ella to offer a line of Childhood Cancer Awareness merchandise for sale during September and through the end of the year. This year’s design is awesome and I know Megan would have loved it. You can still get yours by visiting the Ivory Ella website…and remember…10% of all profits go directly to support the Megan Bugg Global Rhabdomyosarcoma Research Laboratory at the Children’s Cancer Therapy Development Institute.

The “Megan’s Mission Garage Sale” was held on September 10 and thanks to so many generous people, it was a huge success. The event raised nearly $7,000 for the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory”. We never could have pulled off this event without our amazing support team who worked tirelessly from 7:30 a.m. until into the evening. Thank you so much to everyone who made this event possible.

There wasn’t much time to rest after the garage sale, because the very next Saturday we held the “Megan’s Mission 5k Run/Walk”. We had incredible weather that evening with about 300 registered participants. A special thanks to our Race Co-Directors Shawn Hamilton and Chris Shirkey for making this event possible. Also, thank you to all of our participants. I know Megan would have been so proud seeing everyone at the starting line wearing their gold gear, and I also know she would love the fact that 300 people will be wearing gold stocking caps this winter to raise awareness for childhood cancer research. Congratulations to our top three finishers in the male and female divisions.

One of Megan’s favorite events of the year was Curefest weekend, which takes place every September in Washington, D.C. Megan always came away from this event so inspired by the courage and bravery shown by her childhood cancer colleagues as they advocated passionately for increased funding for research. The last time Megan attended Curefest was 2019 because in 2020 COVID caused the event to be held virtually. For the 2019 event, Megan was really far too sick and weak to be there, but she insisted on attending to support the greater cause of childhood cancer awareness. It was oppressively hot in D.C. that year, and Megan was relegated to a wheelchair, but she still led the annual March to the Capital by leading the group in chants in support of this important cause.

Earlier this year, I was contacted by the Director of Curefest who asked us to attend this year because they were giving a special award in Megan’s honor. Every Saturday evening there is a special event where everyone gathers at Freedom Plaza for a slate of speakers and performers who vary from childhood cancer survivors to dance teams all in support of a common cause. It is such a powerful and meaningful evening and Megan was always so inspired by the event. At the conclusion of this year’s Saturday evening, Curefest presented a special award in honor of Megan’s passion and dedication to the childhood cancer community. It was such an honor and I know Megan would have been so proud. I was humbled to accept the award on Megan’s behalf and on behalf of our family. Here is my acceptance speech in Megan’s honor.

Curefest is such an amazing event that not only shines a bright light on the massive funding issue facing childhood cancer, but it also brings the entire childhood cancer community together. This event was the one place where Megan felt like everyone around her really understood what she was going through, and it made her feel at home. It was so good to catch up with so many of her friends…but it was especially nice to catch up with her good friend Leanna who has been such an amazing supporter of not only Megan, but the entire childhood cancer community.

One of the most powerful aspects of Curefest is the Honor Wall that recognizes kids who have fought valiantly but eventually succumbed to the ravages of childhood cancer. I can’t tell you how hard it was to see Megan’s picture on this wall, because in previous years Megan would slowly walk down the entire wall purposefully taking in the devastation caused by this disease. She would always leave that wall with tears and her eyes, but also so motivated to keep making a difference. Although it was really difficult to see my girl’s picture up there, I know she was surrounded by the love of so many of her fellow brave childhood cancer warriors. May they all rest in peace and no longer feel the pain of this vicious disease.

Throughout Childhood Cancer Awareness Month there were so many other events and activities that we participated in, and we are so grateful to everyone who came together in support of Megan’s Mission to end childhood cancer. Although it was such a busy month, we are thankful that we were able to honor Megan’s life and legacy by continuing her mission to end the nightmare of childhood cancer that has impacted so many precious children and their devastated families. Through the Megan’s Mission Foundation, our family is committed to continuing to passionately pursue Megan’s dream of ending childhood cancer through advocacy and research. We will not stop until this nightmare ends!!! I think we made Megan proud.

September being Childhood Cancer Awareness month made for a very hectic, yet rewarding time, but our family also had another major life change that I firmly believe was guided by Megan’s continued influence on all of us. As readers of this blog know, our daughter Mackenzie has been living in the Madison, WI area for the past five-plus years going to school in pursuit of becoming a Speech and Language Pathologist. She has a strong desire to remain in that area because she loves everything the region has to offer…and over the years, Deb and I have grown to really like the area as well. The region has all the benefits of a large city, but in a matter of minutes you can be in the middle of the woods traversing trails or at the water’s edge of some of the most beautiful lakes you could ever find. After Megan’s passing, it has been difficult for Deb and I to be three hours away from Kenzi, and it has also been really hard on Kenzi as she deals with the awful grief of losing not only her sister, but her best friend and confidant.

Kenzi has so many friends at college, but when things were really difficult, she would always count on the support and wisdom of her sister to pull her through the toughest of times. Since Megan’s passing, there have been so many times when Kenzi has needed her sister, and not having her sister a FaceTime call away has been so hard for her. It has also been hard on us not having Kenzi close by as our family tries to heal from this devastating loss. Since Megan’s passing, Deb and I had planned to move to the Madison area in a year or so, but I think Megan had other plans for us.

Megan always loved vacationing in the north woods of Wisconsin because she loved the peace and tranquility of being in nature.

Our family had actually been looking for the perfect cabin in the woods that we could use as a vacation spot, and whenever Megan was feeling up to it, she would scan through Zillow looking for our dream location. After Megan’s passing, we put everything on hold, but in the back of our minds, we still knew that having our family close together was in our future. To make a long story short, by chance Deb happened to be looking at Zillow while we were up visiting Kenzi and she came across an eight acre cabin located on a lake in a beautiful setting…and the best part is that it was only 23 minutes from Kenzi’s apartment in Madison!!! The rest of the story contains so many coincidences that there is no way this happened by chance. This was absolutely Megan’s guiding hand leading us to this place where she knew the three of us could heal together. As a result, we ended up meeting the owners of the cabin, which resulted in us making an offer to them that they readily accepted. That meant spending the rest of September not only carrying forth Megan’s Mission, but also preparing to sell our beloved Coal City home and moving to our dream lakefront cabin in Lodi, Wisconsin.

We closed on our new home September 22 and spent our first night here on September 27. Since then, Kenzi has visited us every day and the three of us are feeling a peace and tranquility that we haven’t found since Megan was originally diagnosed with cancer on December 30, 2014. We are so grateful to our Coal City friends and supporters, as we absolutely loved that community and the home we made there for our family. The difficult thing about staying in our home was that Megan is what made that house a home, and without her, it was so painful to stay there. Every single thing in that home triggered a memory that made the grieving process too difficult and too painful. We still love everything about Coal City, but Megan knew that this move is what our family needed to finally heal and move forward like she would have wanted for us. The very first morning we were here, I know Megan sent this view out our backyard and these furry visitors to let us know that we could finally be at peace.

And then that same evening, just to reinforce her message, she sent us this incredible sunset to let us know that we were all going to be okay.

Although our family will never fully recover from losing our beautiful Megan, her guiding hand has led us to this beautiful healing place. It’s true that childhood cancer stole Megan from us far too soon, but that nasty disease will never be able to erase her life and legacy…nor can it ever diminish the impact she had and will continue to have on our lives. Our special girl now has a permanent spot on the wall in our sunroom where she will always overlook the serene view of peace and healing that she sent to us.

As her mother and I held Megan’s hands while she took her final breaths, we promised her two things. We assured her that we would take care of her sister, and we promised her that we would continue to carry her sword by fulfilling her mission of ending this terrible disease. We are absolutely committed to keeping those promises we made to Megan as we will continue fighting not only for our family, but for all kids and families who have been impacted by the nightmare of childhood cancer. However, I also believe that by Megan sending us to this special healing place, my girl was sending me a strong and meaningful message that I cannot ignore. I think she knows I will never quit fighting for her cause, but I believe she has been sending me strong signs that I need to turn a page in my life. I have so many things I want to do to honor Megan’s life and legacy, and I will continue to keep Team Megan updated through the Team Megan Facebook page, but this will be the final post I make to the Megan’s Journey blog site. It’s time to sign off.

For the past seven and a half years, it has been such an honor to chronicle Megan’s Journey through childhood cancer as what started as a simple way to communicate with family and friends morphed into a following of thousands of Team Megan supporters who became such an important source of inspiration as Megan courageously fought childhood cancer. I am also proud that this site became a source of information and inspiration for other families who were suddenly faced with the fear and uncertainty that accompany this awful disease. I have heard from so many who shared how Megan inspired them to fight the good fight against childhood cancer, and I know that would have made Megan so happy. I am so grateful to everyone who has not only followed Megan’s Journey, but supported Megan and our family as we traveled a path that I sincerely hope none of you ever have to walk. However, through this experience we have learned so much about the love and kindness in people’s hearts as our faith in the goodness of humanity has been reinforced over and over again. We are so grateful.

I have told many people who have followed Megan’s Journey that I was just the writer and Megan was the true author of this story. This was her story and her journey, and I hope you were as inspired by her love, courage, positivity and passion as I have been. I hope Megan’s story has both informed and inspired you regarding the travesty of childhood cancer and the lack of attention these kids receive from both the pharmaceutical industry and the Federal Government. They deserve so much better. I hope that the attention Megan brought to childhood cancer inspires you to continue the fight on her behalf…and on behalf of so many other sweet children who just want a glimmer of hope against this dreaded foe. I hope the way Megan lived her life with passion and purpose has inspired all of us to follow her lead and be about something bigger than ourselves. Most of all, I hope that the way Megan treated others with love, acceptance and respect has inspired you to do the same, because our world could definitely use a lot less judgement and a lot more tolerance. I think that would have made Megan happy.

I know Megan’s legacy will always live in my heart, and her wise guiding hand will continue to serve as my compass providing strength and guidance in my life. I miss her more than words could ever express, but am comforted by the amazing life and legacy she left in her powerful wake.

I hope you will continue to follow the updates on the Team Megan Facebook page, as this story is far from over. I promise you that this is not the final chapter of Megan’s fight to take down childhood cancer. From the bottom of my heart, and on behalf of my family, I thank you all…and I know Megan is smiling down on all of you.

Childhood Cancer: In Her Words

Today is September 1st, which means it is the start of Childhood Cancer Awareness Month. To Megan, this was always the most important month of the year, because she held a steadfast belief that increased awareness was the first step towards an eventual cure. Megan always had faith in the inherent good in people, and in her mind, if people were just made aware of the torture, pain and agony caused by childhood cancer, they would surely move heaven and earth to demand a cure. During Childhood Cancer Awareness Month, Megan would partner with so many different people and organizations to promote “Going Gold” for September. She would participate in interviews, panel discussions, and write daily social media posts, all with the intent of raising awareness for the reality that is childhood cancer. She wrote letters to her local State and Federal legislators asking them to light up their buildings gold for the month. She even wrote a letter to the President of the United States asking him to light the White House gold in honor of all the brave kids past, present and future whose lives had been forever changed by childhood cancer. In Megan’s perfect scenario, Childhood Cancer Awareness Month would get the same level of well-deserved attention that breast cancer receives every October. Although I firmly believe that due to Megan’s efforts along with so many of her childhood cancer warrior friends, progress has been made…but I know she would never be satisfied, because until a cure is found to end this nightmare, she never would have rested.

In preparation for our move to the Madison, WI area, Deb and I have been going through every single cabinet, closet and drawer in our house. We are holding the annual “Megan’s Mission Garage Sale” on Saturday, September 10 from 8:00 a.m.-2:00 p.m. at our home at 693 Trotter Drive in Coal City. This will definitely be our biggest garage sale yet as it is doubling as our moving sale, and as always, all proceeds will go directly to the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory” at the Children’s Cancer Therapy Development Institute. We hope you can join us to not only find some amazing deals, but also to support Megan’s Mission of ending childhood cancer through advocacy and research.

As we were going through some things today in our office, Deb came across a spiral notebook that had a journal entry Megan wrote that neither of us had ever seen. Her powerful words tell the devastating story of childhood cancer better than any words I could ever type. Megan wrote this when she was only 16 years old as a junior in high school, which was only year three of her 7 year battle with the disease. Here is the truth of childhood cancer…in her words.

My name is Megan. I may have cancer, but I can assure you that cancer does not have me. Even when I’m not getting chemotherapy, I still have to fight every single day. Cancer tries to take over my body and my happiness, but everyday I try to find reasons to smile and be happy. Some days I have to look extra hard for that light and brightness, but I always find it.

As a teen going through cancer, it is so hard. You worry about not having hair, getting made fun of because of the way you look, and falling behind in school. Cancer makes it so that there is no way you can have a normal school year. I missed half of my 8th grade year, all of my freshman year, half of my sophomore year, and I can only go to two classes a day my junior year. I am also really worried about college and my future, because cancer is still in me and mentally that is really hard.

I have to fight all the time to not get depressed or have extreme anxiety, but it’s so hard. The amount of PTSD I have is ridiculous. I went through close to two years of chemo, which caused nausea, throwing up, nerve damage, eye damage, skin irritation, and so much more. The first 54 weeks of chemotherapy was a blur for me. I was diagnosed with Stage 4 Alveolar Rhabdomyosarcoma at 13 years old and had tumors everywhere so the chemo treatments were super intense. All I wanted was to be home with my family, but I couldn’t. Then I had over 125 rounds of radiation which left me nauseous and with extreme burns on my skin. I still have dark spots on my body from the harsh burns. I also had three different surgeries. The first surgery I ever got was my power port in my chest. This was a lifesaver since I had to get blood drawn constantly. My chemo treatments also went through my port along with other meds to help with my nausea. This way I didn’t have to get poked in my arm every time. The second surgery was a biopsy of my arm where my main tumor was located. The last surgery was the biopsy of the side of my breast, which was the location of my first relapse.

One thing that is really hard on me being a teenage girl is that I am most likely infertile due to the hard chemotherapy treatments. I won’t be able to ever have kids when I am older, which is something I have always dreamed of. Cancer has also really affected by family tremendously. My Mom and Dad were so scared and it was especially hard on my sister. It was hard for me to see them so scared, but I was always confident and within six weeks my tumors were gone due to my treatments. I have relapsed three times since them, but I will never lose my positivity and confidence. My doctors are amazing and I know they will do anything to help and make sure I win. I am a warrior!

Megan Bugg, 2017

Megan was the strongest, most driven person I have ever met. She fought childhood cancer with absolutely everything she had, but the battle was so hard on her both physically and mentally. Megan would want to make sure that everyone realized that she was not alone. There are so many other brave childhood cancer warrior who have fought, and are fighting, this terribly evil disease. They deserve better than being ignored by big pharma. They deserve much better than the 4% of total cancer funding that currently is dedicated by the Federal Government for research on less toxic and more effective treatments for childhood cancer. These are our kids; our most precious resource; our future…and they need our help…and they don’t have the luxury of time.

Please help honor Megan’s legacy by participating in some way in Childhood Cancer Awareness month. You could make a donation to the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory” or the research facility of your choice. You could write your legislators to demand they take action to save our kids. You could encourage your school district to hold a fundraiser and/or a “Go Gold” day in support of childhood cancer. You could make it a goal to share the plight facing childhood cancer victims to 10 friends and relatives during September. You could even simply set a goal to wear something gold as often as possible to show Megan and all the other brave childhood cancer warriors that they matter, and that we care. Childhood cancer has to be stopped, and it starts today!!! #GoGold

Exciting Things Are Happening

Megan’s life and legacy will always be defined by her unmatched zest for life in the face of insurmountable odds; her drive to be about something bigger than herself; an incredibly generous heart; and that trademark infectious smile. I’ve said it so many times, but over the past nearly 6 months since her tragic passing, that smile is what I miss the most. Although we all miss her so much, we continue to take comfort in the legacy she left in her sweeping wake. Megan was never one to sit on the couch and complain about the unfair hand she was dealt. During her seven year and two month battle with childhood cancer, she never once asked “Why me?“. Throughout her over 150 weeks of chemotherapy, 200 radiation treatments, 8 surgeries, and all of the mental and physical side effects of treatments, she never wasted time feeling sorry for herself. Instead of wasting her time on self-defeating attitudes and feelings, she took action by becoming a fierce advocate for childhood cancer awareness and research. Megan wanted to be remembered as “the girl who did something.” I can say with absolute certainty that “the girl who did something” is making a difference, and with Childhood Cancer Awareness Month right around the corner, I want to share some of the exciting things happening as a result of Megan’s Mission to end childhood cancer.

Every week I join a Zoom conference with the team at the Children’s Cancer Therapy Development Institute dedicated to working on the research projects Megan funded with the over $1,000,000 she has been responsible for raising. I left last Wednesday’s meeting more encouraged than ever before with the exciting things that are taking place at CC-TDI. The generosity that everyone has shown towards Megan’s Mission to end childhood cancer has resulted in CC-TDI being able to expand their staff and dedicate two full-time researchers to Megan’s projects focused on finding less toxic and more effective treatments for RMS. To show all of you that your donations are making a difference, here are two of the CC-TDI researchers who are working solely on Megan’s research projects. Both Kiyo and Victoria are bright, innovative and brilliant young researchers. When we traveled to Portland, OR to visit CC-TDI, Megan and our family got to have supper with the team, and during that evening, Megan developed a special connection with Kiyo. They are all very special people, and we are so thankful that they are working on Megan’s projects.

Kiyo
Victoria

The first project Megan funded required her to raise $280,000 to support the pre-clinical trials for a promising drug originally designed to treat breast cancer. The team at CC-TDI discovered that this drug could be effective at turning of the PAX3:FOXO gene associated with treatment resistance in Rhabdomyosarcoma. However, in order to get this drug to a full clinical trial, CC-TDI needed to perform more pre-clinical trial studies, which is the work Megan decided she wanted to fund. It was so exciting to learn that the pre-clinical trial work was very positive, and in late September, Dr. Keller has been invited to present his results at the Children’s Oncology Group (COG) annual conference. The hope is that the COG will see the promise of this drug in treating children with RMS and agree to the $10.5 million investment it takes to get the drug to a full clinical trial. Dr. Keller stated that it is extremely rare for a privately funded drug study to make it even this far, so getting the drug approved for a full clinical trial would be amazing. If this drug makes it to a full clinical trial and is proven effective in treating RMS, it would be a huge breakthrough, because as I have reported previously, the record of the pharmaceutical industry and the National Institute of Health focusing on childhood cancer treatments is abysmal. I know Megan will be smiling as Dr. Keller makes his presentation in a few short weeks.

Although Megan was excited to fund her original project, she expressed to Dr. Keller her frustration with the time it took for a potential treatment to reach clinical trial and eventually receive FDA approval. She knew that these brave childhood cancer warriors, including herself, didn’t have the luxury of time. As a result, she wanted the CC-TDI team to focus on already approved FDA drugs that could very quickly be repurposed for use with RMS. After discussing her request with Dr. Keller, the “Citizen Scientist Project” was born, which was fully funded by Megan’s fundraising. In Dr. Keller’s words, this project is a high risk-high reward rapid testing program of pilot studies that are intended to move concepts to a point where preliminary data is sufficient to garner initial support for a clinical trial concept, justification for compassionate use, or full grant funding from another source to complete the study. In short, the CC-TDI team is taking available FDA approved drugs and seeing if they can be effective in treating RMS. By taking this approach, Megan reasoned that childhood cancer kids could have access to new treatments much quicker that going through the full clinical trial process to receive FDA approval which could take years. Kids fighting cancer don’t have years…they need treatment options now! When it came to advocating for childhood cancer treatments, Megan’s patience was thin. She wanted change now, and she was willing to do whatever it took to make it happen. I think she would be very pleased with the progress being made at CC-TDI with the Citizen Scientist Project.

Kiyo and Victoria are working so hard to test a variety of already FDA approved drugs, and although many have been ruled out, they are seeing some promising results…which brings up another frustrating hurdle to overcome. Any drug that is already FDA approved is owned by a pharmaceutical company. To receive access to that drug for a pre-clinical trial studies, the drug company has to agree to provide such access. Oftentimes, the pharmaceutical company denies access because they are worried that if the drug is not successful, it will give then bad publicity and hurt their profit margins. For example, there is a very inexpensive drug commonly used to treat a variety of medical conditions. I won’t mention the name of the drug here because we are still working to obtain access for further study, but suffice it to say you have seen it advertised on television many times. When this drug company was contacted about using the drug for a clinical trial on childhood cancer, the company denied access. You might be asking why they would ever deny access for the testing of their drug on childhood cancer? The reason is simple…money. They are worried that if a child in the eventual clinical trial happens to have an adverse effect, it will hurt the drug’s reputation and they will lose income. As I’ve said many times, when it comes to finding less toxic and more effective treatments for childhood cancer, there is no incentive for the pharmaceutical companies to participate, because their motives are all market driven. Of course it’s frustrating and maddening to those of us who have been impacted by childhood cancer, but as Megan used to say…we have two choices. We can either sit back and complain about it, or we can try to change the system. In following Megan’s lead, the people at CC-TDI and those who support them like the Megan’s Mission Foundation continue to work at changing the system.

Megan used to say that the money would follow increased awareness, so as we work to change the system, we continue working to educate people on the nightmare that is childhood cancer. The Megan’s Mission Foundation will continue to encourage as many people as possible to wear gold for Childhood Cancer Awareness Month in September. We will continue holding events where we not only raise money for research, but also educate those in attendance on the plight facing childhood cancer victims and their families. Megan believed that if we just built that critical mass of supporters, eventually the group would become too powerful and too determined to be ignored by the Federal Government. As Megan always said, “a change is coming”…Megan’s Mission is determined to make that happen sooner rather than later. There are far too many kids counting on our success.

Speaking of wearing gold for Childhood Cancer Awareness Month, Megan’s fifth parternship with Ivory Ella is off to a great start. Ivory Ella has released their annual Childhood Cancer Awareness collection, and I know Megan would have been so proud of this year’s designs. 10% of all profits will go directly to support the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory” at CC-TDI. Be sure to get yours today as the collection always sells out fast.

https://ivoryella.com/pages/childhood-cancer-awareness

The annual “Megan’s Mission Garage Sale” will be held on Saturday, September 10 from 8 a.m.-2:00 p.m. at our home at 693 Trotter Drive in Coal City, IL. As I mentioned in last week’s post, our family recently bought a home on 8 acres only 25 minutes from where Kenzi lives in Madison, WI. As a result, this year’s version of the garage sale will double as a moving sale and will be bigger than ever. If you are looking for quality items at rock bottom prices, come on out to this event on September 10. As always, all proceeds will go to support the Megan’s Mission Foundation and it’s goal of ending childhood cancer through advocacy and research.

On September 17 we will be hosting the annual “Megan’s Mission Foundation 5k Run/Walk. This event will be held in downtown Coal City as part of the the Village of Coal City’s Fall Festival. The race steps off in front of Babe’s Tap at 6:00 p.m. with live music and food vendors to follow. This race will be a fun family event open to participants of all ages and ability levels who want to come to come together to support childhood cancer awareness. The first 500 registrations (including virtual registrations) will receive this awesome Megan’s Mission stocking cap just in time for winter. Get registered now to assure your hat. We look forward to seeing everyone on September 17 as we celebrate Megan’s life and legacy in support of her mission to end childhood cancer.

https://runsignup.com/Race/IL/CoalCity/MegansMission

Thanks to the efforts of advocates like Megan, progress is being made towards less toxic and more effective treatments for childhood cancer…but we have to keep pushing. We have to make the pharmaceutical companies understand that 45 kids being diagnosed with childhood cancer every single day is unacceptable…and yet they do nothing. We have to make our legislators understand how inexcusable it is that 7 kids in our country are dying every single day from this vicious and evil disease…and yet they do nothing. All of them could stand to take a lesson from Megan who was “the kid who did something.” In a public speech Megan once gave, she said, “Mark my words…a change is coming.” If Megan were still with us, I know that she would be fighting harder than ever for all kids past, present and future who have been or will be impacted by childhood cancer. Now it’s our turn to fight for Megan’s legacy and all of the kids she represented. Childhood Cancer Awareness Month is coming. Let’s do this!!! #gogold

Childhood Cancer Awareness Month is Coming

As I begin composing this post, I have vivid memories of Megan actively preparing for Childhood Cancer Awareness Month in September. To her, September was the most important month of the year, because it symbolized not just her personal fight, but the much larger battle she was passionately waging against this vicious and evil disease. Megan had a vision to realize the change she wanted to make in this world. Since the pharmaceutical companies and the Federal government both ignore the plight of childhood cancer, she new that it would take a ground roots awareness effort to finally realize the change she was seeking. When she partnered with the Ivory Ella clothing company five years ago to design her first Childhood Cancer Awareness Collection, of course she was excited that 10% of the proceeds would go towards childhood cancer research, but she was more excited that so many people would be wearing childhood cancer themed shirts making people aware of the cause. Megan firmly believed that if she could only get more and more people to wear gold and to wear clothing that showed the gold childhood cancer awareness ribbon, that eventually that critical mass would force a change. Her believe was that the money would eventually follow increased awareness. She knew that if people only understood the physical and mental torture caused by childhood cancer, they surely wouldn’t allow it to continue. She believed that everyone surely agreed that children were our country’s most precious resource, so if people only knew how many kids were suffering and dying at the hands of this terrible disease, they would force a change. Ending childhood cancer was her dream. It was her purpose. It was her passion…and although her ultimate dream is yet to become reality, her mission continues…even in her absence.

Since Megan tragically passed on March 9, 2022, we have been working diligently to keep the promise we made to our girl as she took her final breaths on this earth. As her mother and I held Megan’s hands tightly, we promised her that we would take care of her sister, Mackenzie, and that our family would be okay. We also promised her that we would continue her mission of ending the nightmare of childhood cancer so that no kid would ever have to experience the pain and suffering that she endured. Although there is still so much work to do, the Megan’s Mission Foundation has been continuing her vision of ending childhood cancer through advocacy and research. Raising money to support the promising and innovative research being conducted at the Children’s Cancer Therapy Development Institute is still a priority of the Foundation, but in keeping with Megan’s vision, we are also passionately committed to raising awareness through making sure as many people as possible are wearing gold during Childhood Cancer Awareness month.

I previously mentioned Megan’s five year partnership with Ivory Ella. Megan always loved working with Ivory Ella on her annual Childhood Cancer Awareness Collection. One of the highlights of Megan’s life was when the company flew her to Rhode Island to their corporate headquarters where she worked with the designers on her first line of clothing. Her mother accompanied her on this trip, and I remember her stating how selfless Megan was about this opportunity. Anytime someone asked her to put something personal to her in the design of the shirts, Megan absolutely refused stating that this was not about her, but rather about the bigger cause of childhood cancer awareness. Megan knew she wasn’t just fighting her own personal battle, but rather she was willingly taking on the burden of every single kid past, present and future who had fought, is fighting, or could one day fight this evil disease. That original design resulted in Ivory Ella donating $30,000 towards childhood cancer research. Every year since, Megan would communicate directly with the company to make sure the design was exactly what she wanted. Until this year, Megan actually modeled all of the clothing for the Ivory Ella website, which I know was so empowering for her. Megan always wanted all childhood cancer warriors to know that whether they had hair or not, they were beautiful, so she was never ashamed to put her gorgeous bald head out there for all to see.

Given Megan’s long and fruitful relationship with Ivory Ella, I know how pleased she would have been when I received a communication from them that they were once again going to promote a Childhood Cancer Awareness collection this year. Even better, 10% of all proceeds will go towards supporting the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory” at the Children’s Cancer Therapy Development Institute. This lab was so important to Megan, and I firmly believe that that when Dr. Keller told her that CC-TDI was going to construct this lab in her name, it gave her the assurance she needed that even in her absence, her mission would continue. Currently, the lab is scheduled for a grand opening on Megan’s birthday, which is April 30. That is going to be such an exciting and emotional day, but we will all take comfort in knowing that Megan will be smiling down on all of us so happy that there will finally be a research facility solely devoted to researching less toxic and more effective cures for RMS.

You can further support the Megan Bugg Global Rhabdomyosarcoma Research Laboratory by purchasing your Ivory Ella Childhood Cancer Awareness merchandise today. This year’s designs are stunning, and I have personally tried the shirts and they are very high quality and extremely comfortable. There is also a childhood cancer awareness tumbler that is awesome, as well as a bracelet. Order the entire collection, or pick out your favorite items. I know Megan would be so happy that more people will now have the opportunity to wear childhood cancer awareness items that will only increase the visibility and awareness of her cause. Like she always said, the money will follow increased awareness. As always, thank you to everyone who not only supports Megan’s Mission, but more importantly supports all kids past, present and future who have been or will be impacted by this ridiculous disease. You can order this year’s Ivory Ella Childhood Cancer Awareness collection at the link below.

https://ivoryella.com/pages/childhood-cancer-awareness

Another Megan’s Mission Foundation event that will take place on September 17 is the “Megan’s Mission 5k Run/Walk”. This event will take place at 6:00 p.m. in downtown Coal City. Once again, all proceeds from this event will go to support Megan’s Mission of ending childhood cancer through advocacy and research. This is going to be such a fun family event as runners/walkers of all ages are invited. If you are an avid runner, if last year is any indication, we will have a very competitive 5k race. If you are a recreational runner, just come out and have a good time. If you are a walker, you are more than welcome as we had many walkers at last year’s event. You can walk with friends, push a stroller, or even take your dog for a walk in support of a great cause. This event coincides with the Village of Coal City’s Fall Festival which means there are fun events going on all day and into the evening. Prior to the race, there is a classic car show, live music, food vendors and more. Following the race, there will be more live music as well as food and drinks. The first 500 registered for the Megan’s Mission 5k will receive the awesome gold Megan’s Mission stocking cap pictured below. I know Megan would be so pleased to see hundreds of people sporting this gold hat during Childhood Cancer Awareness month and throughout the winter. There is also a virtual registration option, so don’t hesitate to make sure you secure your Megan’s Mission stocking cap.

https://runsignup.com/Race/IL/CoalCity/MegansMission

Our family has made a major life decision that I wanted to share. As readers of this blog know, Mackenzie graduated from the University of Wisconsin-Madison with a degree in Communicative Disorders with the goal of becoming a Speech/Language Pathologist. She is currently in graduate school at UW-Madison getting ready to start her final year. During her stay in Madison, our family visited her frequently and we started vacationing in the North Woods of Wisconsin. Our entire family loved it up there, but Megan was especially fond of the peace and tranquility that accompanied her stays in nature. She loved to sit out on the deck to take in the fresh air and watch the wildlife. She felt at peace, as did the rest of us. Since Megan’s passing, our family has been keeping an eye out for properties that could either serve as a vacation home, or if it was close enough to Kenzi, a permanent home. After losing Megan, our family has felt the need to be closer together, so recently, our search has intensified. We absolutely love our community and are so thankful for the incredible love and support we have been shown during Megan’s seven year battle, but right now, family seems more important than anything, and in order for the healing process to move forward, we need each other. To make a long story short, last weekend we stumbled upon our dream property which combines the Wisconsin North Woods feel while being less than 30 minutes from where Kenzi lives. To secure the property, we knew we had to move quickly, so we put in an offer last Sunday and it was accepted. As a result, our current home that we love so much is for sale. If you know anyone interested in a beautiful 4 bedroom home with an amazing backyard pool/entertainment area, have them contact us at 815-210-6394. Our home is also listed on Zillow at https://www.zillow.com/homedetails/693-Trotter-Dr-Coal-City-IL-60416/89980392_zpid/?view=public

On September 10, we will be holding the second annual Megan’s Mission Garage Sale at our home located at 693 Trotter Drive in Coal City. Since we are going to moving to our new Wisconsin home at the end of September, the Megan’s Mission Garage Sale is actually going to be a moving sale. The sale will take place from 8 a.m. until 3 p.m. on September 10. Since this is a moving sale, we plan to have a huge selection of quality items as well as our usual 50/50 drawing and more. All proceeds from this event will go towards supporting the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory” at the Children’s Cancer Therapy Development Institute.

Childhood Cancer Awareness month is almost here. Let’s all come together and help make Megan’s Mission a reality. You can honor Megan and all kids impacted by this terrible disease by wearing gold as often as possible. When you wear your gold, explain to your friends and family why you are wearing gold and encourage them to do the same. Sooner or later, we will build that critical mass of supporters that the pharmaceuitcal companies and the Federal government can no longer ignore. As Megan used to say, “A change is coming”, and when it does, we will all feel the presence of Megan’s beautiful smile congratulating everyone on “Team Megan” for a job well done. Although I miss her so very much, I am comforted that her legacy continues to make a difference in this world. She would have liked that.

“Her Absence is Like the Sky…”

You know the old saying about how time heals all wounds? In the process of dealing with the loss of our beautiful daughter Megan, I can tell you that “time” is not the magical elixir it’s made out to be. In traveling the grief journey, I have started to realize that this process consists of two distinct phases; the first is to deal with the overwhelming loss of someone you loved so much, which is of course extremely difficult. However, the second phase has proven even more daunting, which is figuring out how to remake your life without your loved one in it. I believe I have come to grips with the fact that Megan’s physical being is not with us anymore. I’ve worked hard not to be angry or bitter, because I know that’s not how Megan would have wanted me to live my life. I try to focus every single day on all of the incredible experiences we shared together and that special father-daughter bond that will always be there. The manner in which Megan lived her life has taught me to be a better person; a more thankful person; a more giving person; and a more accepting person. I embrace those lessons and aim to live up to the high standard my daughter set not just for me, but for all of us. All things considered, as we close in on the five month anniversary of Megan’s March 9 passing, I think Megan would be proud of not just me, but especially of Deb and Mackenzie as we all strive to live up to her ideals and make her proud. What I have found far more challenging is the second phase of the grief process, which is the process of remaking my life without Megan in it.

I recently came across a quote from C.S. Lewis who wrote this about the loss of his wife,

“Her absence is like the sky, spread over everything.”

In trying to put into words how it feels to lose Megan, this quote hits the mark. Megan was such an integral part of my life that almost every daily event reminds me of a memory…and it’s not just once or twice a day…something jars a memory literally every few minutes. She was so much more than my daughter, because she was also my best friend, my coffee partner, my spicy food partner, my nature partner, my Chicago Cubs partner, my gardening partner, my cooking partner, and so much more. She always knew just when I needed a hug, a laugh, or just a long talk. When I was with her, she made me feel good about myself and good about the world in which we lived. She inspired me with not just her words, but with her brave, courageous and generous actions. When you lose someone who influenced your life so dramatically, figuring out how to move forward without that person is so difficult. Like the sky, Megan’s influence was “over everything”.

One of the most effective ways our family has tried to cope with the loss of our beautiful Megan is to focus on keeping her life, legacy and passions alive. As everyone knows, Megan was a passionate and effective force in the childhood cancer community as she worked fervently to further awareness and research funding for this awful disease. Her passion, commitment and effectiveness for her cause has resulted in her raising $1.7 million for childhood cancer research. In her honor, the Children’s Cancer Therapy Development Institute in Oregon is constructing the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory”. This lab institutionalizes Megan’s Mission, which I know would have been so important to Megan. In fact, Dr. Keller at CC-TDI told Megan of his plan for this lab prior to her passing, and I know it gave her so much comfort to know that even in her absence, her mission to save children would continue. I am convinced that when that magical day comes and a cure is found, society will look back on what we did to these kids with shock and awe. The pharmaceutical companies and the Federal Government have ignored these childhood cancer warriors and left them to toxic chemotherapies that in some cases are over 50 years old. Megan was so determined to change that, and I know that some day her vision will become a reality…it’s just such a shame that so many kids have to suffer while the adults with the power to do something about it just sit on their hands and do nothing. These kids deserve so much better.

Megan’s legacy also resulted in our family starting the “Megan’s Mission Foundation” in her honor, which is a registered 501(c)3 organized under the “Community Foundation of Grundy County.” Our first major fundraiser for the new Foundation was the “Megan Bugg Memorial Golf Outing”, which turned out to be a huge success. Thanks to the support of so many generous sponsors, donors, and golfers, we ended up raising $48,000 for the Megan’s Mission Foundation to help end childhood cancer!!! There are so many people to thank who helped us organize and facilitate such an incredible day of celebrating Megan’s life and legacy. A special thank you to Brad Boresi who worked with us to co-organize the entire event. He put in countless hours to help us put on an outing that I know would have made Megan proud. Also, thank you to our workers from the Coal City Volleyball Team, the Coal City High School NHS chapter…and especially everyone from the Broadway Dance Studio who donated so much time on a day that started at 6:30 a.m. and didn’t end until 8:00 p.m. All of our registration table workers including Jaime, Emma, Kelly, James and Brittany who were all so awesome throughout the day. Jack Micetich…who, as always, helped us with our special lunchtime Megan’s Mission presentation as well as developing our graphics. Don Phillips…who generously donated his time and sound system for our event. A huge thanks to Kim Scerine who not only helped all day, but also took charge of organizing our many raffle baskets and so much more. And of course, thank you to all of our golfers, because without you, this event doesn’t happen. We are already thinking about how to make next year’s golf outing bigger and better as we continue to support Megan’s Mission of ending childhood cancer.

We are also excited to have announced that registration for the “Megan’s Mission 5k Run/Walk” is now open!!! This event will take place on Saturday, September 17 at 6:00 p.m. as a part of the Coal City Fall Festival. I also know Megan would be happy that her event is being held during Childhood Cancer Awareness Month, which was always so important to her. This is an event that will be fun for the entire family as runners/walkers of all ability levels are welcome. The Village of Coal City shuts down South Broadway on this day for a classic car show, bands, food vendors and more, with the highlight of the evening being the Megan’s Mission 5k Run/Walk at 6:00 p.m. The first 500 registered participants will receive the awesome Megan’s Mission stocking cap pictured below. We are also excited to announce that on the registration site there is a virtual option, so even if you are out of State or can’t attend our event, you can still support Megan’s Mission and receive the End Childhood Cancer gold stocking cap in the mail. Remember to register now as the hat is only guaranteed for the first 500 entries. Register now at https://runsignup.com/Race/IL/CoalCity/MegansMission

When writing about the golf outing, I mentioned how awesome everyone involved with the Broadway Dance Center was in helping out at the event. In a previous Megan’s Journey blog post, I also wrote about the impact the Broadway Dance Center had on Megan’s life. At a time when Megan desperately needed a social network of friends, the staff and students at Broadway Dance stepped up and gave that to her. Miss Kim, Jaime, Emma and so many more never treated her like she was sick, but instead as a friend and colleague. Megan loved them so much as the highlight of her week was heading to work as a receptionist at the studio.

At this past June’s recital, Kim Scerine choreographed an Elton John themed finale in Megan’s honor. This past Christmas, Megan had gotten tickets for she and I to see Elton John in concert in Chicago, and she was so excited. Unfortunately, she got too sick for us to go which was so disappointing to her. That’s why it was so special that the Broadway Dancers gave Megan her own concert that I know she was watching from above with that big beautiful smile.

Since that blog post, many have asked to see the Elton John finale, so thanks to Kim Scerine and the On Broadway Dancers, here is “Rocketman”.

Along the grief journey, I have found that it’s hard to not constantly think about someone who gave you so much to remember. As my wife continues to remind me, it’s okay to remember, because there are so many incredible memories of Megan in our lives. Over the past few weeks, I am getting better at following Deb’s advice by conjuring up the great memories and leaving the painful ones filed away. Remaking my life without Megan in it has definitely been the hardest and most painful part of mourning her loss, but I’m going to keep working at it because I know that’s what Megan would have wanted. As C.S. Lewis said, “Her absence is like the sky, spread over everything.” But that’s okay, because when I remember everything she touched and how she positively influenced not only me, but everyone around her, it makes me smile. As Megan took her final breaths on this earth, I promised her that we would all be okay. It’s taking time, but we are getting there. I think Megan would be proud of us.

An Empty Room

One of the saddest aspects of childhood cancer is that there are so many other families, just like us, who have lost a child. We are all forced to belong to an exclusive club that absolutely no one wants to join. The only positive to the club is that others have traveled our journey previously, and they are such valuable resources when it comes to dealing with the grieving process. One of the most salient pieces of advice I received came from someone I have known since my college days at the University of Illinois. Tragically, he also lost a child far too early from childhood cancer. After Megan passed, he kindly reached out to me, and one of the first things he told me was, “When it comes to dealing with the death of your child, you cannot do anything wrong.” In essence, what he said was so comforting because it gave me the freedom to feel what I was feeling; handle things the way I was handling them; and deal with the grieving process on my own time schedule…all without the unnecessary burden of added guilt. In talking with him and so many others, I have learned that there is definitely no prescription for grieving the loss of a child. Everyone is different, which means that everyone handles this excruciating pain and sadness in their own way and on their own schedule. Absolutely no family should have to experience what we have experienced at the evil hands of childhood cancer, but Deb, Kenzi and I have all given ourselves the freedom to deal with the grief in our own way and according to our individual needs. I think Megan would be proud of us.

One thing that has been especially hard for me is going through the things in Megan’s bedroom. As long as we live in this house, that will always be Megan’s bedroom. Although its been a week and four months since Megan passed on March 9, I still get so emotional walking into her room. Thankfully, there have been some great friends who have helped us go through Megan’s things and slowly clean up her room, which has been so helpful. One decision we made that brought me so much comfort was having many of Megan’s close friends come and pick out items of Megan’s clothing, hats, jewelry and other personal belongings that meant something to them. I know Megan would be so happy that the people who meant the most to her are receiving some comfort and joy from possessing and wearing her things. Another event happened this week, which also brought me even more peace.

Kenzi moved into a new off-campus apartment in Middleton, WI, which is a suburb of Madison. She is getting ready to start her final year of graduate school on her way to becoming a Speech-Language Pathologist. Her final year consists of field placements, which means she only has to go to campus for a class one evening per week. By moving off campus, she was able to get a much larger apartment for the money. In preparing for her move, she told us that she really wanted to take Megan’s bedroom set to use in her bedroom at the new apartment. I think having her sister’s furniture helps Kenzi feel closer to Megan, whom she misses so much. Yesterday morning, we rented a U-Haul trailer and headed up to Kenzi’s with Megan’s bedroom set and got her all moved into her new place. Of course, the bedroom furniture looks fantastic in Kenzi’s apartment, and I know it would have made Megan so happy to know that her sister wanted to have her furniture. Megan always found so much comfort and peace in her bedroom, and I know Kenzi will feel that as well.

It’s still hard for me to look in Megan’s bedroom and see that it’s nearly empty…but it’s not just the lack of furniture that makes it feel empty. More importantly, her bedroom is empty of Megan’s special spirit and soul. It’s not her stuff that made that space so special…it was Megan.

There were so many nights I laid in bed with her where I thought I was providing her comfort, but in reality, she helped me so much during those evenings. She taught me so many valuable lessons that I am trying so hard to carry with me as my life moves forward without my little girl. I vividly remember laying next to her whenever she was having trouble sleeping due to pain, anxiety, or the very real fear of her questioning whether or not she would wake up the next morning. It was at those times that I would light her favorite Woodwick Fireside-scented candle and we would just lay there and talk. When she was really struggling, she would ask me to “cuddle her” for a little extra comfort. Oftentimes, her Boo Boo Kitty would find her way into Megan’s room at just the right time and snuggle right under her chin. Those were special times where I learned so much from Megan about how to live a life of happiness, love, and thankfulness. She was so wise.

As I have shared previously, the Megan’s Mission Foundation is up and running under the auspices of the Community Foundation of Grundy County. The goal of the Megan’s Mission Foundation is to continue Megan’s life and legacy with the goal of ending childhood cancer through advocacy, research and scholarship.

Our first major Foundation event is the “Megan Bugg Memorial Golf Outing” which will be held on Saturday, July 23 at The Creek in Nettle Creek, IL. Due to high demand, we expanded this year’s event to include a 9-hole event in the morning in addition to our usual 18-hole event which will tee off after lunch. This year we have so many amazing raffle and auction items, so we are excited for our 260 golfers to have an amazing day helping us raise money for Megan’s Mission of ending childhood cancer. Thank you to everyone who has generously sponsored this event.

We are also excited that registration for the “Megan’s Mission 5k Run/Walk” will be live sometime this week. Stay tuned to this page and the Team Megan Bugg Facebook page for registration information. The event will take place at 6:00 p.m. on Saturday, September 17 in downtown Coal City. Not only is this event purposely scheduled during Childhood Cancer Awareness Month, but it is also part of the Coal City Fall Festival. There are events happening on Broadway Street in Coal City all day on Saturday, which includes food and entertainment opportunities following our run. In honor of Megan’s affinity for stocking caps, all participants in this year’s 5k run/walk will receive a commemorative “Megan’s Mission” gold stocking cap just in time for the winter season. We hope everyone on “Team Megan” will come out and support the “Megan’s Mission 5k Run Walk” in support of childhood cancer research being conducted at the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory” housed at the Children’s Cancer Therapy Development Institute.

On my early morning bike rides, I often find myself drawn towards a path that takes me to the site of Megan’s future headstone. Due to materials being back-ordered, we have placed a temporary marker at her resting site in the Braceville Cemetery. Her site is located in the newest section, which is in the southwest portion of the cemetery. I often find peace in stopping there in the morning, because it makes me feel a little closer to Megan. When I rode there late last week, there was this flower arrangement in a Starbucks cup. I’m sure this was placed by Megan’s favorite “Starbucks Guy”, and I also know it made her smile.

I am so happy Megan is finally free of the gruesome physical and mental pain caused by childhood cancer, but I sure do miss those quiet, special times with my girl. I treasure the time I had with her, and I am definitely a better person for it. Childhood cancer may have emptied Megan’s bedroom, but it could never take away her impact on this world. It cannot take away her her indomitable spirit; her incredibly positive attitude; her loving heart; and especially that infectious smile. As long as we remember that smile, Megan will never be far away.

Every Five Minutes

July 9 will mark four month since the passing of our precious Megan at the evil hands of Stage 4 Alveolar Rhabdomyosarcoma. It’s hard to put into words what the experience of the grieving process is like, but I can tell you that I wouldn’t wish this on any parent. I can’t imagine a pain more intense than losing a child. Each day I hope that it will get easier, but it really doesn’t. This may seem like an egregious exaggeration for effect, but I can assure you it is not. This is the raw truth. During the hours I am awake, there are never five minutes that go by where I don’t think about Megan. The smallest of events triggers a memory and I immediately begin to think about my girl. Thankfully, the memories are starting to become more positive, because at first, all I could picture in my mind were those final moments when her mother and I held her hand as she took her final breaths. In my heart, I know we had so many great times together and I am doing my best to focus on the way she made me laugh; the way she could cheer me up whenever I was feeling down; the way she inspired me to be a better person; and of course, that beautifully infectious smile that could light up the darkest of days. It is those beautiful moments that are allowing me to heal and keep moving forward, because I know that’s what Megan would have wanted.

The pain of losing a child is so intense, which is why the nightmare of childhood cancer has to be stopped. At some point, the decision-makers have to take the blinders off and start listening, because to put a child through what Megan had to go through is not just unfair…it is cruel and barbaric.

As I reflect on this blog, it’s amazing to me how the purpose and message has changed over the seven-plus years of it’s existence. This blog started simply enough as a way to communicate with family and friends at a time when our family was completely overwhelmed. Our 13-year-old daughter had just been diagnosed with one of the most aggressive forms of childhood cancer, and we were all reeling. The blog was a way to share Megan’s daily progress with family and friends without Deb and I being tied to our phones 24/7. Through the positive power of social media, “Megan’s Journey” quickly became a support system for Megan as she drew strength from the positive messages and well-wishes of her followers who soon became the powerful force known as “Team Megan”. Then the blog transitioned into a resource for other parents who unfortunately had become part of this exclusive club of childhood cancer parents. These parents used this blog as a source of information about how to guide their precious child through this childhood cancer journey, which is a service I know Megan was so proud to help provide. As Megan fought childhood cancer with a determination and positive attitude that could not be swayed, people seemed to use the blog for personal motivation whether or not they were fighting this evil beast. Megan’s story of overcoming the odds while always keeping a smile on her face became a source of inspiration for those around her. Once Megan became a passionate national advocate for childhood cancer awareness and a dedicated fundraiser to the cause, the blog seemed to morph into a new purpose which was to bring to light the travesty that is childhood cancer. Megan wanted to shine the brightest light on the fact that the big pharmaceutical companies continue to ignore childhood cancer because they don’t see these kids as profitable for their shareholders. She wanted everyone to know that the Federal Government does no better as they allocate only 4% of all funding for cancer research on childhood cancer research. Megan believed that kids deserved better, and she wanted everyone to know it. Now, due to Megan’s passing, this blog has turned into a story of the real impact childhood cancer has on not just it’s young victims, but on their families who are left to pick up the pieces once the evil disease has achieved it’s goal. My hope is that just maybe the right person will read these posts and realize that something has to be done. No family should be going through what we are fighting our way through, but unfortunately, unless our country does something, this will happen again, and again, and again. As Megan used to say, “Kids matter!!!” We have to stop ignoring childhood cancer which is the number one cause of death by disease in children in our country. Surely we can do better by our kids. I know if Megan were still here with us today, she would be the worst nightmare of the pharmaceutical companies and our legislators. That’s why “Team Megan” has to become her voice. We have to finish her journey in her honor.

As I have shared in previous posts, as Megan took her final breaths, I promised her two things. First, I assured her that I would make sure her mom and sister would be okay. Then I promised her that we would carry her sword by continuing her mission to end childhood cancer once and for all. That promise has resulted in the formation of the “Megan’s Mission Foundation”, which is now a registered 501(c)3 formed under the “Community Foundation of Grundy County”. Here is the official logo of the Foundation.

The mission of the Foundation is to end childhood cancer through advocacy, research and scholarship, which I know would have made Megan so proud. Anyone can now make a tax deductible donation to the “Megan’s Mission Foundation” at the website below, or by using the QR code also pictured below.

https://cfgrundycounty.fcsuite.com/erp/donate/create?funit_id=1330

The first formal event for the Megan’s Mission Foundation will be the “Megan Bugg Memorial Golf Outing” which will be held on July 23 at “The Creek” in Morris. We are so excited for this full day event as we have 260 golfers participating between our morning 9 hole event and our afternoon 18 hole event. Trust me when I say that the raffle prizes and silent auction items will blow you away!!! We also have multiple fun activities on the course, so there won’t be any dull moments for the golfers. We also have some Megan’s Mission giveaways that I know would make Megan very proud as they bring awareness to her mission of ending childhood cancer. I apologize to those who have recently requested to sponsor the event, but we had to close sponsorships last Monday in order to get everything to the printer. However, if you are still interested in helping with the event, you can still make a donation to assist with the purchase of gift cards, raffle items, etc, because the more we get donated, the more money we will have to donate in support of the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory” at the Children’s Cancer Therapy Development Institute. This lab was so important to Megan as I believe it gave her so much peace knowing that her legacy and purpose in life would live on through this lab. If you would like to make a donation to help offset the costs of the “Megan Bugg Memorial Golf Outing”, you can do so via Venmo @MegansMission22 or using the QR code below. If you don’t use Venmo and want to donate, please email debbugg@gmail.com

Every five minutes…that’s how often the memories of my beautiful daughter fill my heart and mind. There is no escaping the damage done by childhood cancer, which is why it has to be stopped. I am confident that our family will follow Megan’s lead and continue finding the beautiful moments that life has to offer. Megan was so good at that, and we all need to draw strength from her in our quest to live up to her ideals. Childhood cancer is so evil, but its days are numbered as Megan’s Mission will someday be realized. When that glorious day comes, everyone will feel the warmth and joy of Megan’s beautiful smile. I miss that smile so much.

So Many Firsts

Losing our precious Megan to childhood cancer has been so traumatic for our family. Even though we are all comforted by the fact that in our hearts, we know Megan would want us to continue living life to the fullest, this is still so hard. One of her mottos was to make the most of every single day, and we are all doing our best to live up to the example she set. However, there is no getting around the fact that losing Megan has left a wound that will never be fully healed. With time, that gaping wound heals a little more and more, but the damage will always be there. When I have spoken with other parents who have unfortunately traveled our path, they all say that the pain never leaves, but over time, you learn to live with it. At times, I feel like Deb, Mackenzie and I are learning to cope with our loss as we try to follow Megan’s lead and search for the beautiful moments that present themselves each day. Then there are other times that the memories come crashing down like a ton of bricks and you feel like you are almost back to square one of the grieving process. For me, the most difficult times are all of the “firsts” that have come since Megan passed…the one month anniversary of her passing; her first heavenly birthday; the three month anniversary of her passing; the first Broadway Dance recital; and now what I am finding to be the most difficult “first” of all…my first Father’s Day without my beautiful girl.

As a father, I can’t imagine a greater pain than knowing that you couldn’t protect your child. So often, that is how I feel about losing Megan. I just feel so helpless because I couldn’t protect my little girl from all of the mental and physical pain she was going through at the hands of this evil disease. It’s such a helpless feeling and it haunts me daily. I would give anything to have Megan back so that I could have another chance to take care of her, but I know that childhood cancer took that away. Instead, I have to learn to focus on all of the positive memories that include all of the incredible times we had together. I miss so many things about Megan, and on this Father’s Day, the memories came crashing down so fast that it was difficult to manage my emotions. However, I know Megan wants me to be happy. I know she wants me to keep living my life. I know she wants me to keep fighting for her…and I am committed to doing all of the above in her honor. It’s just at times, the pain of losing her can be overwhelming, and today was one of those days. I hope Megan knows how much I love her; how proud I am to be her father; and how I hope to always honor her life and legacy. When I’m having days like this, I find myself looking back at all of the pictures to remember all of the great times we had together…and to see that beautifully infectious smile again.

I knew this week would be tough, but thankfully I have Mackenzie, who is so thoughtful and caring. I think she knew this would be a hard week so two weeks ago, she planned a father/daughter weekend trip down to see Grandpa and Grandma Bugg on the farm. Kenzi is so busy right now as she just started her summer speech pathology internship placement, so for her to organize this quick weekend getaway for the two of us was so special to me. I met her on Friday evening in LaSalle and we drove together to the farm. We had so much fun hanging out with Grandpa and Grandma, but what I probably enjoyed the most were the six hours the two of us spent together in the car just talking, laughing and reminiscing. I am so fortunate to be Kenzi’s dad and I could not be more proud of everything she has accomplished and the wonderful, caring person she has become. I know Megan would be so proud of her sister.

Although this Father’s Day has been emotional and difficult, I am committed to bouncing back on Monday to continue with Megan’s Mission. Deb and I have been busy finalizing the organization of the “Megan’s Mission Foundation” as a registered 501(c)3 under the umbrella of the Community Foundation of Grundy County. Now that the Foundation is official, we can move forward with it’s mission of ending childhood cancer through research, advocacy and scholarship. I think Megan would be so pleased that her life and legacy will live on through the “Megan’s Mission Foundation”

We are also continuing the planning process for the “Megan Bugg Memorial Golf Outing” which will be held on Saturday, July 23 at the Nettle Creek Country Club. The response from the golfers was incredible as we filled both the morning and afternoon session very quickly. However, we are still looking for personal and/or corporate sponsorships as well as donations of gift baskets We have 260 golfers with us for the day, so this event is a great opportunity to show your support for Megan’s Mission of ending childhood cancer. All proceeds will go towards the Megan’s Mission Foundation which supports the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory” at the Children’s Cancer Therapy Development Institute. You can access the sponsorship form below.

meganbuggouting2022Download

The “Megan’s Mission 5k Run” will be held on the evening of Saturday, September 17 in downtown Coal City. Planning is just starting for this event, so more information will be shared soon, but remember to mark your calendars now because not only is this for a great cause, but it is also so much fun. This event coincides with the Village of Coal City’s Fall Festival on South Broadway Street. The entire street is closed down and there are food trucks and live music. It is such a fun evening because you can participate in the 5k that evening and then hang around for the festivities to follow. It is fun for the entire family. As soon as we have registration information ready, I will share it on this blog and the Team Megan Facebook page. Here is a picture of Grandpa Bugg finishing last year’s 5k run. At 82 years young he ran the entire 5k without walking once!!!

As always, our family has felt so much love over the past two weeks. Just when we need it the most, we continue to receive kind words of encouragement from so many kind and caring people. Two weekends ago, the Major School of Dance held their annual dance recital at the Coal City High School Performing Arts Center. The owners of the facility are our next door neighbors, and in support of Megan’s life and legacy, they donated a dollar of every ticket sale to the Megan’s Mission Foundation. We were so touched when they invited Deb and I to their Friday night show and presented us with such a generous check to support childhood cancer research. I know they made Megan smile.

This past weekend, the Broadway Dance Studio held their annual recital. As readers of this blog may remember, Megan worked at Broadway Dance for a few years and she loved every minute of it. When Megan was struggling with the impact that childhood cancer was having on her social life, Kim Scerine, Emma Frantini, Jaime Frazier and all of the dancers took Megan in and gave her a second home. Megan always loved everything about recital week, and when we attended last weekend’s show, I could feel Megan’s presence there with us. I know she was beaming with pride as she watched her girl Dailey perform her beautiful turns in the middle of the stage. I know she was loving the Jr. Company performance of Jellicle Cats, which is from her favorite musical. I especially felt her infectious smile during the Elton John finale, which Kim Scerine choreographed in Megan’s honor. For my Christmas present this past year, Megan got us both tickets to see Elton John in concert in Chicago. Megan was so excited because she knew how much I loved his music. Unfortunately, she got too sick for us to go, but over the weekend the Broadway Dancers gave us both a show that I know Megan loved.

This was the first page of the recital program.

Last weekend, Mackenzie came home for Makenna Emerson’s birthday and of course, we had a great time celebrating. After Megan passed, Kenzi picked out quite a few of Megan’s shirts that Makenna was going to have made into a quilt for Kenzi’s new apartment. Makenna was able to give her the quilt this weekend and it turned out perfect. It was so special to Kenzi because every single shirt she picked out had a story about she and her sister. Thank you to Makenna for always being there for my girls…and Happy Birthday!!! Here is a picture of the special strawberry cupcakes Kenzi made for Kenna as well as the beautiful quilt.

Deb and I have been talking about ways we can honor Megan’s life and legacy at Coal City High School. As we were discussing different options, Spring Grove Nursery contacted the school district and said they wanted to donate a tree in Megan’s memory. We decided to have the beautiful State Street Maple planted on the south side of the school near Door 14, which is the entrance to the Performing Arts Center. It is also planted close to the football stadium so that everyone will see the leaves in their bright gold fall colors during Friday night football games. I think Megan would be happy that the tree in her name will exude the gold color of the childhood cancer ribbon every fall. Thank you to Spring Grove Nursery for their generous donation.

It’s true that this Father’s Day has been emotional and difficult, but I take comfort in the fact that Megan’s life and legacy continues to make a positive difference in the world. Megan challenged us all to live more; love more; and do more to make the world a better place. As Deb and I travel the area, we continue to see gold hearts in the windows of houses and places of business. We keep seeing “Team Megan” signs on storefronts and marquis. We see people wearing the Megan’s Mission bracelets and childhood cancer awareness shirts everywhere we go, which I know would have made Megan so happy. When Deb went to Nelly’s in Wilmington for lunch last week, she saw this on the chalkboard, which I believe says it all.

To all the dads out there…Happy Father’s Day!!! Hug your kids for me and promise to never take a single moment with them for granted. They are such a blessing.

“Live for each second without hesitation.”

Elton John

Where Is The Outrage?

As readers of this blog know, I am the Superintendent of Schools for Coal City School District #1, which is a PreK-12 district with about 2100 amazing students. I remember being in my office on the afternoon of May 24 when one of my colleagues from across the hall told me there had been another school shooting. Of course my heart sank to hear about such a tragedy happening yet again, but I went about my business of finishing the school day. When I got home late that afternoon and turned on the news, I was in shock. I couldn’t believe what I was hearing, and as the news kept coming, it only got worse. As I’m sure you know, the senseless violence ended in the deaths of 19 beautiful children and two very brave and heroic teachers. I sat on my couch absolutely crushed with tears in my eyes. I was equal parts sad and outraged that this happened yet again. Of course I understand that for both political and societal reasons, issues such as this are very complicated…but in the end, we are talking about protecting our kids. Although there is strong disagreement on how we solve the problem, on that importance of protecting our kids, I would hope everyone is united in their outrage. I sincerely hope that collective outrage ends in a plan to better protect our kids and those brave educators who take care of them every single day. I have to believe that this time, the collective outrage will make a difference and better days are ahead. When it comes to realizing long-needed systemic and substantive change, it seldom comes without some level of common outrage by the public. Those 19 precious kids who senselessly lost their lives in Uvalde matter, and we cannot let their loss of life be in vain. There have to be changes so this doesn’t happen again!!! The collective outrage has to be strong, swift and meaningful, because that’s how change happens.

When it comes to childhood cancer, for some reason our country has never reached the level of expressing collective outrage for the travesty that our kids are facing, and as a result, nothing much has changed for the past 50 years. In fact, instead of getting better, the issue of childhood cancer is only getting worse. Here are just a few statistics that Megan liked to reference to help people understand the crisis of childhood cancer.

  • In the United States, 1800 kids die every single year from childhood cancer.
  • It is estimated that there will be 13.7 million worldwide cases of childhood cancer between 2020-2050. Unless there are major improvements in diagnosis and treatments, of this, 45% will go undiagnosed and 11.1 million will die if no further investments in interventions are made.
  • 400,000 kids worldwide develop cancer each year.
  • Globally, a child is diagnosed with cancer every 80 seconds. (That’s without the estimated 44% of childhood cancer cases in the world that go undiagnosed.
  • Overall childhood cancer incidence rates are increasing at 0.9% per year.
  • 1 in every 285 kids will develop cancer before the age of 20.
  • On average, about 16% of children die within 5 years of diagnosis. Among those children who survive to five years from diagnosis, 18% of them will die over the next 25 years.
  • The average age of a child diagnosed with cancer is less than 8 years old.
  • On average, there are 70 potential life years lost when a child dies of cancer compared to 15 potential life years lost for adults who die of cancer.
  • Childhood cancer is the #1 cause of death by disease in children in the United States.
  • Every day, 47 families learn that their child has cancer.
  • The Federal Government allocates only 4% of their total research budget for cancers on childhood cancers.
  • Pharmaceutical companies allocate less than 1% of their entire research and development budgets on finding more effective and less toxic treatments for childhood cancers.
  • Since 1978, fewer than a dozen drugs have been approved by the FDA to specifically treat childhood cancers. 12 new drug are approved every year for adult cancers!
  • After an adult drug is approved by the FDA, it is usually 6.5 years later before clinical trials start to test its effectiveness on kids.
  • For some childhood cancers such as Alveolar Rhabdomyosarcoma (Megan’s type of cancer), the dismal survival rate has remained unchanged for 50 years.
  • For other childhood cancers such as DIPG, the survival rate remains almost 0%.
  • Due to the toxicity of current treatments, of those kids lucky enough to survive childhood cancer, 2 out of 3 will experience other chronic health conditions including secondary cancers.

Childhood cancer is a public health and societal crisis, but the issue continues to be swept under the rug by both the Federal Government and the pharmaceutical companies who decide which medical issues are going to receive funding and which aren’t…which is always based on profitability for the drug companies. During her short life, Megan’s mission was to change that. She wanted to bring the travesty of childhood cancer into the sunshine for all to see. She wanted to inform people to the point that there became a collective outrage resulting in a demand for change. As she voiced many times, her dream was to assure that no more kids had to go through what childhood cancer put her through. She didn’t want the tragic deaths of her fellow childhood cancer warriors to be in vain. She didn’t want to see the current childhood cancer warriors have to continue going through these archaic and toxic chemotherapy treatments that cause so much physical and mental damage. Most of all, she wanted to make sure that no future kids ever had to learn the devastating and life-changing news that they have cancer. She was so determined and motivated to end this vicious, evil and ridiculous disease. It was her cause in life. She made it her purpose, and it is such an important part of her lasting legacy.

I receive weekly reminders that the scourge of childhood cancer is still far too prevalent as it continues to devastate children and their families. Just this week, I received a message from the mother of Megan’s friend Ally that her latest scan showed more cancerous lesions in her lungs. Ally was in the midst of chemotherapy treatments for Rhabdo (ARMS) when she received this terrible news. I know that Ally will keep fighting, and I hope everyone on Team Megan will keep her in your thoughts and prayers. She deserves so much better.

I received another message this week about a beautiful little girl named Isla who was recently diagnosed with ARMS in her sinus and nasal cavities. She is only 3 years old. Isla is going to have to undergo toxic chemotherapy treatments, radiation, and a feeding tube to assure proper nutrition. Her family is in that awful initial stage of not only being so scared for their little girl, but also trying to figure out how to financially get through this entire ordeal. Unless you have been through it, you cannot fathom the financial impact that treating childhood cancer can have on a family. Please go HERE to learn more about beautiful Isla, and please send her your thoughts and prayers as well.

I know Megan would be so happy and proud that families in need are using the Megan’s Journey blog as a resource, because she used to play that role for so many kids and families. When it came to supporting those impacted by childhood cancer, Megan was not only a tremendous information resource, but also their biggest motivator and cheerleader. She believed in every single kid and continually reinforced the importance of maintaining a positive attitude and a steely belief that they could win their battle. To Megan, when it came to fighting childhood cancer, attitude was everything. I am so proud to carry her sword and be serving in that role for families who are desperate for information, inspiration and just a glimmer of hope. I think that would make Megan happy.

The Megan’s Mission Foundation will continue to keep Megan’s life and legacy alive with a focus on ending the nightmare of childhood cancer. We do have a couple of events coming up where you can help support her important mission. The first is the “Megan Bugg Memorial Golf Outing”, which will be held on Saturday, July 23 at “The Creek” in Morris, IL. Although all of our foursomes filled very quickly, we are still accepting corporate and personal sponsorships. All of those sponsorship opportunities can be found HERE. All proceeds from this event will go towards the Megan’s Mission Foundation, which includes funding of the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory” at the Children’s Cancer Therapy Development Institute.

meganbuggouting2022-6Download

The “Megan’s Mission 5k Run” will be held on the evening of Saturday, September 17 in downtown Coal City. Planning is just starting for this event, so more information will be shared soon, but remember to mark your calendars now because not only is this for a great cause, but it is also so much fun. This event coincides with the Village of Coal City’s Fall Festival on South Broadway Street. The entire street is closed down and there are food trucks and live music. It is such a fun evening because you can participate in the 5k that evening and then hang around for the festivities to follow. It is fun for the entire family. As soon as we have registration information ready, I will share it on this blog and the Team Megan Facebook page.

You can also still order your “Megan’s Mission Coffee”, which includes the option of Megan’s favorite blonde roast. I can speak from my own morning coffee experience that these blends are so good. $5 from every bag sold goes directly to support the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory”.

Sadly, childhood cancer took our precious Megan from us before her mission could be completed, which is why we now have to carry the banner for her. Through the Megan’s Mission Foundation, we plan to continue Megan’s legacy of ending childhood cancer through awareness, research and scholarship. Megan’s impact on the childhood cancer community has been profound as she has now been responsible for raising $1.7 million to fund childhood cancer research, but we know she would never be satisfied until the disease is eradicated. We know she would have continued marching forward to encourage the collective outrage necessary to end this disease, and she would not have stopped until it happened.

In our country, when enough people are outraged, things change. Shouldn’t we be outraged when when our country is losing 1800 kids per year to childhood cancer? Shouldn’t we be outraged when kids like Megan are forced to raise money to fund research on the very treatments that could save their lives? Would we accept adults with heart disease holding bake sales to fund research for their treatments…yet we willingly accept this reality for our kids fighting cancer? The Federal Government pumps billions into so many initiatives, yet saving 1800 kids per year from childhood cancer is worth less than 4% of all cancer funding? The pharmaceutical companies make billions off of creating drugs to treat adult cancer, but we cannot convince them to spend some of that profit on creating drugs that could keep 7 kids from dying today, tomorrow, and the day after that, and the day after that…? What has to happen for our policy-makers to understand that kids matter too? I can tell you the answer to that question…It will take the collective outrage of people unequivocally demanding a change.

Whether it is the tragic deaths of those 19 beautiful children in Uvalde or the 7 beautiful children who will die today from childhood cancer…the collective outrage should be the same…and the demand for change should be loud and clear. As Megan used to preach to anyone who would listen…Kids matter too!!!

Trying to Regroup and Refocus

I wrote the first post for Megan’s Journey on January 1, 2015 only a few days after we discovered the initial tumor on Megan’s left forearm, which was Christmas Day, 2014. The original purpose of creating the blog was to find an efficient way to communicate with family and friends so Deb and I were not overwhelmed with update requests at the hospital. We wanted our focus to be on Megan, and although we knew everyone meant well, we just couldn’t keep up with all of the questions and well-wishes from everyone. I admittedly had zero experience with keeping a blog, so while Megan was at one of her 3 hour MRI scans, I remember watching a YouTube video on how to create a blog, which happened to be published by WordPress. I used that limited knowledge to create a quick update post, and for the next few days I updated daily to keep our family and friends informed. The next thing I knew, the power of social media took over and suddenly Megan’s Journey was trending quickly far beyond the intended audience of family and friends. What resulted was not only the formation of the “Team Megan” community, but also other unintended outcomes that seemed not only beneficial to Megan’s recovery effort, but to other audiences as well.

Megan’s Journey provided a support system that became so important to Megan…especially during the early stages of her battle with Stage 4 Alveolar Rhabdomyosarcoma. When she was in intensive chemotherapy treatment that was wreaking havoc on her physical and mental health, one respite would always be when the mail was delivered and she would open greeting cards of support from people from across the country and eventually from all over the world. Those cards and letters let her know she was not in this battle alone and often the kind words of others is what provided her the motivation she needed when she was feeling down. Many of those early supporters became her close confidants as she developed friendships from a variety of destinations…and a large faction of those were fellow childhood cancer warriors.

Of all the benefits this blog ended up providing, none was more important than the connections it fostered for Megan from within the childhood cancer community. I’ve alluded to this many times in previous posts, but when it comes to understanding the physical and mental challenges posed by childhood cancer, no one but those within the childhood cancer community can truly comprehend the true impact of the experience. Megan’s early connections with Kasey, and her later connections with brave warriors like Mia, Sophia, Campbell, Emmy and Katie provided her with a vital support system she could turn to when the going got tough. Those girls were always there for each other, and I’m not sure those relationships would have been kindled were it not for the social media reach of the Megan’s Journey blog.

Another unintended consequence of the blog that always made Megan proud was when families who recently had a child diagnosed with cancer would turn to this blog as a source of information, motivation, and support. Not only have I connected with families from across the world, but so has Megan…and I’m sure it’s not surprising that although I could provide facts and information, Megan was the one they turned to for motivation, understanding and a glimmer of hope. I fondly remember retiring to her bedroom so often to not only Facetime kids who were newly diagnosed, but she would also do the same for the mothers who didn’t know where to turn or what to do. Our teenage daughter would talk to these adults like a seasoned counselor, and her focus would always be the same as she would consistently remind them of the importance of staying positive and believing in their child’s ability to heal. To Megan, during this battle attitude was everything, and she shared her message to both kids and adults within the childhood cancer community. Her ability to provide comfort during these times of tremendous trauma for families is one of the things that makes me the most proud.

Finally, over the years it seemed that Megan’s Journey not only served as motivation within the childhood cancer community, but it seemed to bring out the best in the general population of readers. Megan’s experiences and stories seemed to serve as a “How To” guide when it came to approaching life. Since her tragic passing on March 9, I have had so many people reach out to say how Megan’s attitude towards life changed their own lives for the better. They have shared that when they experience challenges, they think about how Megan would have dealt with it and it motivates them to stay positive and overcome whatever is in front of them. People have shared about how they try to approach life differently now by being more thankful for what they have and not focused on what they don’t. So many have talked about Megan’s example of making her life about something bigger than herself, and how that has motivated people to take up a cause…whether that be advocating for childhood cancer or for some other social cause that is important to them. Others have reached out to talk about Megan’s ability to “Win the Day” and how that mantra has changed their lives. In short, Megan laid down a challenge for all of us and I think she would have been so happy to know that just maybe she helped to make the world a little happier; a little more thankful; a little kinder; and a little more compassionate.

The reason I spent some time reviewing the impact of the Megan’s Journey blog is that last week was the first time in seven years and four months that I did not post an entry. For the first 54 weeks of Megan’s battle, I posted daily and then when Megan first went into remission in February, 2016, it was her decision for me to start posting weekly on Sundays. From the beginning, this blog belonged to Megan. It was her story to tell and I was just the vehicle to put her story into words. My sincerest hope was that Megan would fully recover and then she would have this amazing legacy in print to share with her children and grandchildren to let them know that with the right attitude and motivation, they could overcome and accomplish anything; but alas, childhood cancer refused to cooperate with that plan. Therefore, after 723 posts where at least one post was written each week for seven years and four months, last week I just needed a break in an attempt to regroup and refocus.

I have to admit that it felt a little empty not communicating with the Team Megan community last Sunday. Sharing Megan’s life and legacy became cathartic for me, because in addition to providing motivation to Megan, the childhood cancer community, and her Team Megan following, putting her story to words helped me compartmentalize and come to grips with what was happening to my precious daughter. Not only was sharing Megan’s story motivating others, but it was motivating me to stay in the battle with her and share in her gift of determination, positivity and compassion. So without Megan by my side, each passing week made posting the blog more and more difficult. Following her passing, our family was so focused on keeping our promise to her and raising the entire $500,000 to fund and equip the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory” at the Children’s Cancer Therapy Development Institute. That endeavor dominated our waking hours because we so desperately wanted to bring this aggressive goal to fruition by her 21st heavenly birthday on April 30. Thanks to so many generous people and organizations, we not only reached her goal, but far surpassed it. The last fundraising activity prior to her birthday was the “Buy Megan a Drink” event, which incredibly raised over $15,000!!! We are so grateful to everyone, and although we are thrilled we could do this for Megan, the real beneficiaries will be the childhood cancer community. After reaching our lofty goal, not only myself, but also Deb and Kenzi needed a breather to regroup and refocus. The three of us took a short vacation together, and as you probably noticed, for the first time in over seven years, I didn’t write a blog post for last Sunday. It was a mental health break that my family needed, and one I know Megan would have wanted us to take it. However, now that we have taken our two weeks off, it is time to regroup and refocus our energy on the future of MEGAN’S MISSION.

The MEGAN’S MISSION Foundation will be focused on childhood cancer research, advocacy and scholarship. We are in the process of working through the formation of the foundation, but we know that the mission will mirror Megan’s passion and commitment to ending childhood cancer. Our family recognizes that we cannot keep the fundraising pace up that we maintained in reaching the aggressive goal for the formation of the “Megan Bugg Global Rhabdomyosarcoma Research Laboratory”, because that pace is unsustainable over time. Instead, we will focus on a few major fundraising events such as the July 23 “Megan Bugg Memorial Golf Outing” (more information below) and the “Megan’s Mission 5k Run” which will take place in Coal City on September 17 (more information to come soon). We will also be expanding our fundraising efforts to corporations and other larger foundations in an effort to broaden the funding base for childhood cancer research. Prior to Megan’s passing, she and I had planned to begin aggressively advocating and lobbying pharmaceutical companies and government officials for childhood cancer funding. MEGAN’S MISSION will take up that sword and focus on convincing those who control the medical research purse strings to loosen them for childhood cancer research. Finally, we will be focused on promoting the best and brightest to enter the field of pediatric oncology through scholarship…whether that be as a researcher, doctor, nurse, or other healthcare provider. These are all things Megan felt strongly about, and through the MEGAN’S MISSION Foundation we are committed to keeping her life’s purpose alive. Here are a few more details on the golf outing and the 5k run.

The July 23 golf outing quickly filled with foursomes, but we are still actively looking for sponsorships. All proceeds from this event will go towards the MEGAN’S MISSION Foundation. As Megan used to always say, when it comes to combatting childhood cancer, every single dollar counts, so if you are interested in helping to sponsor this event it would go a long ways towards furthering Megan’s cause of ending this dreaded disease. You can access the sponsorship form at https://bit.ly/MeganBuggGolfOuting

The “Megan’s Mission 5k Run” will be held on the evening of Saturday, September 17 in downtown Coal City. Planning is just starting for this event, so more information will be shared soon, but remember to mark your calendars now because not only is this for a great cause, but it is also so much fun. This event coincides with the Village of Coal City’s Fall Festival on South Broadway Street. The entire street is closed down and there are food trucks and live music. It is such a fun evening because you can participate in the 5k that evening and then hang around for the festivities to follow. It is fun for the entire family. As soon as we have registration information ready, I will share it on this blog and the Team Megan Facebook page.

It’s hard to put into words how the loss of our precious Megan has impacted our family. Although you might think you are ready, the reality is that nothing can prepare you for such a devastating loss. Although we are still going through the grieving process, we are trying hard to regroup and refocus to continue MEGAN’S MISSION of ending childhood cancer. Her life, legacy and mission deserve to live on and we are committed to honoring her memory. Stay tuned because there is more to come…