This Has to Change!

Along Megan’s Journey, we have met so many amazing kids from all over the country and the world who are courageously battling the various forms of childhood cancer.  It seems like everyday, Megan is telling me about another child she has met on social media who was just diagnosed with one of the 12 forms of childhood cancer.  As readers of this blog know, Megan has become very close to some of these incredible teens only to watch helplessly as cancer’s vicious grasp was just too much for them to overcome.  As she has traveled her own personal journey, I have watched her in agonizing pain.  I’ve watched her throw up over and over again while all I could do was rub her back and give her a cold cloth to wipe her face.  I have watched her in intensive care when we didn’t know if she was going to make it through the night.  I’ve also watched her cry from the mental anguish and anxiety that cancer causes even during remission.  However, I have never seen her as upset as she gets when she learns the devastating news that one of her friends has died from this awful disease.  She connects with these kids on a level that none of us could ever understand, so when one of them passes away, it is almost too much for her to handle, because not only is she losing a friend and an important part of her support system, but it also causes her to once again further question her own mortality.  Obviously, Megan tends to bond with other teenage girls because they can speak the same language, but her love and support goes out to so many other kids who are fighting this disease, and unfortunately, sometimes it hits way to close to home.

This weekend, Megan found out the terrible news that another student in the Coal City School District has relapsed and has to go to battle once again.  Jacob Zickefoose is one of the most fun-loving and positive teenage boys you will ever meet.  He bravely fought Ewings Sarcoma when he was in kindergarten and we were all so excited when he was declared in remission.  Everything we read about cancer tells parents that five years in remission is the magic number, but tragically, that didn’t hold true for Jacob.  His parents recently found out that he has relapsed with secondary hypoplastic MDS as a result of his previous treatment for Ewing’s.  Jacob now has to go to battle all over again and it makes Megan and our family so angry, because it shouldn’t be this way.  Jacob’s cancer is a secondary cancer most likely caused by the toxic chemotherapy treatments that he went through when he previously fought Ewings Sarcoma. That is just not right!!!  Due to a serious lack of attention and inadequate funding for childhood cancer research, our kids are being treated with chemotherapy drugs that are over 30 years old.  These chemotherapy treatments are so toxic that it almost barbaric that we give them to our kids.  I bet it would shock you to learn that some of the chemotherapy drugs our kids receive are derivatives of mustard gas that was used as a toxic chemical weapon during World War I!!!  With all of these toxic treatments being used on our kids, secondary cancers are a reality for so many childhood cancer survivors, which is why a childhood cancer survivor is NEVER really out of the woods.  The risk of secondary cancers, as well as so many other side effects, are omnipresent for these kids for the rest of their lives.  Jacob deserves better than this!!!  After what he has been through, it breaks my heart to know that he has to go through it all over again.  However, if anyone can get through it, it’s Jacob, because he is an amazing young man.  Please keep Jacob and his wonderful family in your thoughts and prayers.  Better yet, do something even more important for all of these amazing kids by contacting your congressman or congresswoman and telling them to provide more federal funding for childhood cancer research.  Jacob, Megan and so many other brave kids would be forever in your debt.

Speaking of kids who have lost their battles, Megan’s very good friend Mia passed away nearly two years ago from a relapse of Alveolar Rhabdomyosarcoma.  Megan was able to get to Topeka, Kansas to spend precious time with Mia who died two short days after their special visit.  Throughout Megan’s four year journey, I have never seen her so upset as she was after Mia passed away.  Megan still mentions Mia so often, and fortunately, she has been able to stay closely connected to Mia’s mother, Amy.  This weekend, Megan was so happy when Amy came to spend some time with her at our house.  She brought Megan some very special gifts that had belonged to Mia, which was so touching.  Amy is so strong, because I just don’t know how you go on after watching your child suffer the way that Mia did.  She is an amazing person, and Megan was thrilled to see her.  Coal City High School held a Childhood Cancer Awareness Night at Friday night’s football game where people wore gold to support the cause.  Megan was so honored that Amy attended the game with her.  It was also very nice of the Coal City Coalers to recognize Megan, Jacob and all of the other brave kids who are fighting this terrible disease.  Here are a few pictures of the evening.

Megan with Mia’s mother, Amy.

Megan ready for the game!

Megan with her friends Katelyn and Ava.

Megan even got the cheerleaders from Plano High School into the act by handing out gold ribbons.

During Childhood Cancer Awareness month, there have been so many schools holding special events, and of course, Coal City High School is at the top of that list.  Prior to Megan getting sick as an 8th grader, she was a starting setter on her middle school volleyball team.  Due to her chemotherapy treatments and the permanent nerve damage it caused in her legs and feet, she can no longer play volleyball.  It’s been hard for her not to be with her teammates anymore, but she has always followed the team’s progress closely.  Thanks to Coach Pam McMurtrey and the rest of her teammates, they have always held a “Megan Bugg Night” to raise money for childhood cancer research.  Since this was Megan’s senior year, they made this year’s event extra special for her.  Not only did they decorate the gym in gold, but they also added a picture of Megan up on wall with the rest of the seniors.  That was really touching to Megan.

Prior to the varsity match, they held a ceremony where one of her teammates, Lauren Phillips read a letter from the team to Megan…which of course made all of us cry with emotion.  Megan also spoke about her journey and why she is fighting on behalf of all kids to end childhood cancer.  Here is a video of her speech.

After Megan and Lauren spoke, all of the members of the volleyball team were able to recognize family members or loved ones who have been impacted by cancer.  It is so humbling and sad to realize how cancer has impacted nearly every single family in attendance.  Finally, Coach McMurtrey made a special recognition to honor the very brave Jacob Zickefoose.  After this, everyone went outside where there was a release of balloons to commemorate the event.  It was so great that they included Jacob.  Here is a video of the balloon release.

Here are a couple more pictures of what was a very special night, not only for Megan and Jacob, but for everyone who has felt the evil grip of cancer.

Megan with Coach McMurtrey. She coached Megan during her final volleyball season, which was her 7th grade year. She also coached Kenzi in high school.

Megan with Lauren Phillips, who read the very kind letter from the volleyball team.

Megan with Jack Micetich and the very brave Jacob Zickefoose.

Megan with her good friend Katelyn.

Not only is Coal City High School dedicated to raising awareness for childhood cancer, but so are many of our neighboring schools.  On Thursday night, Herscher High School asked Megan to come over and help them with their Childhood Cancer Awareness Night.  Megan used to play club volleyball with a girl on the Herscher varsity team who also happens to be named Megan.  Megan also used to play club with another girl from Herscher named Zayla Mitzdarffer.  Tragically, cancer took Zayla from this world as a teenage girl, and Herscher wanted to take the opportunity to recognize her.  Megan and Zayla knew each other well, so when Zayla passed, that was also very difficult for Megan.  Her mom is one of the strongest and bravest individuals I know, so it was very emotional to hear her speak at Thursday night’s event.  Megan also spoke to encourage everyone to support childhood cancer awareness.  Thank you to the Herscher Volleyball Team for allowing Megan to be a part of their childhood cancer awareness event.

Megan with Megan from Herscher.

Although this blog has always been dedicated to chronicling Megan’s Journey and raising awareness for childhood cancer, I can’t help but expand the focus a bit this week.  As a 30 year educator, I have known literally thousands of kids during my tenure.  Every single one of them is special, so when I recently learned that a CCHS graduate from last year, Alex Armstrong, was fighting for his life, I was heartbroken.  Please keep Alex and his family in your thoughts and prayers during this very difficult time for them.  No parent should ever have to experience this with their child.

The hardest part of experiencing childhood cancer is without a doubt watching helplessly as your own child fights this nightmare of a battle.  However, a close second in terms of difficulty, is constantly being so close to so much heartache and pain from the brave kids and their families who are also fighting childhood cancer.  I am so tired of watching cancer take our kids from us far too soon, and also the heartache of watching their parents grieve.  I was in the car with Megan last night, because since she has scans on Monday, she was having a bit of a rough evening, so we headed up to the Joliet Mall so she could play with some puppies.  On our drive up, she was on her phone looking at social media and she told me about another child she connected with who was just diagnosed with cancer.  I told her that I worried about her continually hearing about more and more kids who have this awful disease, and I asked her why she continues to search these kids out and hear their stories.  She quickly answered that these kids keep her motivated to not only fight her own battle, but to fight for an end to childhood cancer.  She said these kids are her motivation to make a difference.  It’s kids like Jacob, Mia, Sophia, Isaiah, Ellie, Tyler, Evie, Olivia and so many others that keep her fighting.  I only hope there can finally come a day when Megan, Jacob and the rest of these kids can be at peace and no more children will have to hear the news that they have childhood cancer.  That will definitely be a day to celebrate.

Megan has scans on Monday at 12:30 p.m., so she could use positive thoughts from everyone on Team Megan.  Let’s hope that Megan continues to defy all of the odds so she can continue her mission to end childhood cancer.

Curefest Weekend in D.C.

Once Megan completed her first 54 week chemotherapy/radiation protocol and was told she was finally in remission, her mind turned towards advocating for all kids with childhood cancer.  Even when she relapsed and had to go through 36 more weeks of chemotherapy and radiation, it didn’t slow her down from her mission.  Since she started her advocacy work, she has raised $120,000 to support Dr. Walterhouse’s research on ARMS and Ewings Sarcoma at Luries Children’s Hospital in Chicago.  She has also partnered with Ivory Ella on her first t-shirt design to raise another $30,000 to support childhood cancer research at Boston Children’s Hospital.  She is also currently partnered with Ivory Ella on a second line of childhood cancer merchandise that can be found at the Ivory Ella website.  10% of all sales will go towards her fundraising efforts in support of Dr. Walterhouse’s important research.  She has also met with her local State legislators to plead her case, as well as meeting with Congressman Adam Kinzinger and Senator Dick Durbin to advocate for increased funding for childhood cancer research.  This weekend, Megan took another step forward in her advocacy efforts by traveling to Washington D.C. to actively participate in Curefest weekend.

Megan learned of Curefest last year and she really wanted to attend, but her treatments didn’t allow for the trip.  This year, she took it upon herself to personally contact Mike Gilette, who is the director of Curefest and ask how she could participate.  After the director spoke with her on the phone, he called her back and asked if she would be a featured speaker at the event!  This weekend, I had the pleasure of meeting Mike and he made a point to let me know that Megan’s contact was unique.  He said that usually it is the parents of childhood cancer kids who contact him to ask if their children could participate.  He told me he knew there was something special about Megan because she took the initiative to contact him by herself.  After speaking with her, he said he knew he wanted her to speak at the event.  On Friday, Megan, Megan’s good friend Katelyn, Deb and I took off for D.C. and Curefest weekend.  Here is a picture of Megan and Mike Gilette, who put so much work into making this weekend happen.

Megan was very excited about this event for a variety of reasons.  Not only did she know it was another opportunity to raise awareness and advocate for childhood cancer funding, but she was most excited about the opportunity to meet other teens who have traveled her journey.  There is a unique connection between childhood cancer survivors that has to be seen to understand.  Throughout the weekend, there were so many powerful, inspiring and heartbreaking stories that were shared.  It was a weekend full of emotions, but we would not have traded the experience for anything.  Megan had a fantastic experience, and the best way to share it is through pictures and videos…so hear goes.

We got there on Friday afternoon, which was the only day we had free to do a little sightseeing prior to Saturday’s Curefest events.

We were starving when we arrived, so we headed to the famous Ben’s Chili where Megan was excited to sit in the same seat as Barack Obama 🙂

In front of the Smithsonian Garden.

In front of the White House.

Megan was very excited to head to the famous Georgetown Cupcakes. We planned on each getting a cupcake and then we left with a dozen! 🙂

We also toured the Holocaust Museum and the Smithsonian Air and Space Museum.  After a very busy day, we headed to the Founding Farmers for a late but relaxing supper.

On Saturday morning, we relaxed at the hotel for the morning because we knew Megan had a very long day ahead of her.  We started at noon with preparations for the rally to the Capitol Building.  Megan and Katelyn made signs and had the opportunity to meet lots of other teenage childhood cancer survivors.  We also learned of the tragic stories of the families who lost their children to the horror of childhood cancer.  Childhood cancer is just so unfair.

At 2:00 p.m., it was time for everyone to rally to the Capitol Building to raise awareness for childhood cancer.  It was a powerful group that was full of emotion for the cause.  You can see Megan marching in this video.

We were all so surprised and happy that Deb’s best friend Wendy Kotsen, her daughter Janna and her niece Kelsey all drove from New Jersey to Washington D.C. to come and support Megan and our family at Curefest.  Their presence made the weekend just that much better.

Here are a few other pictures from the rally to the Capitol.

Here is a video of the Rally to the Capitol.

After the rally to the Capitol, we had a couple hour break before the festivities started again.  From 5-7:00 p.m. there was a meet and greet where Megan got the chance to meet so many other brave cancer fighters.  One girl she really hit it off with was another senior in high school from Maryland named Lily.  She and Lily spent a lot of time together on Saturday evening and Sunday.  Megan brought some of her Ivory Ella shirts to the event to give away, so she made sure that Lily had one.

After the meet and greet, there were so many performers who were all childhood cancer fighters.  There were some who sang, danced, or just told their stories.  It was so inspiring to see these kids who have stared down cancer and came out on top.

After the performances, we all walked from Freedom Plaza to in front of the White House for a candlelight vigil.  This was probably the most emotional part of the weekend for me as we listened to parents call out the names of their children who had lost their battles with cancer.  Following the recognition of all of these brave warriors who cancer took from us far too soon, we all held up our candles and sang Amazing Grace in remembrance.  It was really a touching moment that I caught on this video.

After ordering a late night pizza for supper, we finally got back to the hotel at about 10:00 p.m. to get rested up for Sunday’s events.

Sunday started at 10:00 a.m. on the National Mall.  Here is a picture of Megan and Katelyn on the National Mall in front of the Washington Monument.

When we got to the National Mall, there were booths set up all around the stage to highlight all of the not-for-profit groups doing such amazing things for childhood cancer.  Megan walked around to every one of them to lend her support and appreciation for their efforts on behalf of childhood cancer.  Following the expo, there was a 1.8 mile walk around the National Mall to show support for childhood cancer, and then it was time for the final speakers of the weekend…of which Megan was the first childhood cancer warrior to speak.  We were so proud of her as her message was about her story, but more importantly, she wanted to recognize her friends who cancer took away from her.  She also passionately pleaded for more that 4% of federal funding for cancer research to go specifically towards childhood cancer.  We were so proud of her!!!  Of course, I was so excited that I forgot to hit record and missed the first few seconds of her speech, but I recovered in time to catch the majority of it.  Here she is…

After Megan and a couple other kids spoke, they called all of the childhood cancer survivors on the stage to receive a courage medal.  Once again, it was so inspiring to see all of these brave warriors on one stage.

Of course, Megan wanted to say another goodbye to Lily before we headed back to the hotel to get ready for our flight home.

As readers of this blog know, Kenzi is in Madison, WI for her sophomore year of college at UW.  It would have been nice if our family could have been together this weekend, but there was just no way Kenzi would have been able to swing this trip.  The logistics would have forced her to miss at least a day of class, and as she told me this morning, she had about 12 hours of homework to do.  Although she would have liked to have been with us, she was happy that her boyfriend Nick came up to watch the football game with her on Saturday…which unfortunately they lost in a huge upset 😦  But as you can see by the picture, Kenzi still had a good time.  It’s hard getting used to her being away from us, but we are so happy knowing that she is happy and in the right place preparing for her future.  We know she was with us in spirit this weekend.

As we traveled home on the plane tonight, I couldn’t help but reflect on the many emotions I felt throughout this incredible weekend.  There was so much joy in seeing so many brave cancer warriors who were out there staring down cancer and never giving in.  There was the extreme pride I felt in watching Megan speak so eloquently and passionately in front of so many people.  I felt tremendous hope in knowing that maybe… just maybe… such a large group of passionate people will make a difference and finally bring more funding and less toxic treatments to childhood cancer victims.  I also felt a deep and profound sadness in seeing so many parents in attendance who had lost their child to cancer.  There cannot be anything worse than watching your child succumb to the vice grip that is childhood cancer.  However, I think more than anything, I left this weekend more motivated than ever to continue helping Megan not only fight her personal battle, but to help her win the even bigger war she is fighting–the all out war she is waging on childhood cancer.  Our kids deserve far more than the current 4% of Federal funding for cancer research they receive.  Our kids should not be treated with the same treatments I would have had as a child.  Our kids should not be treated with poisons that leave them with harmful side effects for the rest of their lives.  Childhood cancer should not be the number one killer by disease of children.  We have to do better for our kids!!!  Had you seen Megan and the rest of these brave warriors at Curefest, I know you would be ready to join the fight.  However, I will have to ask you to trust me on this one and join Megan anyway in her crusade to end the nightmare that is childhood cancer.  I never again want to watch another parent have to call their deceased child’s name at a candlelight vigil in front of the White House.  Someone has to start listening to these kids!!!

 

 

 

Homecoming Week

Nearly four years ago, Megan’s senior year Homecoming experience was the furthest thing from our minds.  At that point, we had no idea if she would even make it to high school, let alone her senior year.  Due to a lack of appropriate awareness and funding, childhood cancer treatments are still in the stone ages when compared to the treatment of other diseases in our country (which I will come back to later in this post).  This is why learning that your child has cancer is so devastating for parents.  We know the terrible and tragic survival odds.  We also know that due to the archaic treatments our kids endure, even survival brings with it a litany of health issues that plague these kids into and throughout adulthood.  Even given all of the mental and physical pain and suffering Megan has been through, she is one of the lucky ones.  Her determination, will to win and contagious smile, coupled with her stellar medical team and all of the amazing support she has received from everyone on Team Megan, has allowed her to continue reaching milestones that were unforeseeable four years ago.  Traveling the journey that is childhood cancer causes you to view the smaller moments as big moments, but it makes the milestone moments in life become something truly epic.  Seeing Megan in her Homecoming dress ready to attend her senior year Homecoming dance was truly one of those epic moments in her recovery effort.

As anyone who knows Megan already realizes, she absolutely loves everything about getting dressed up and ready for a formal event.  She adores make-up, and has actually become quite the connoisseur of everything related to the topic.  On Saturday, she knew it would be a long day for her, as her stamina is still recovering from her nearly four year battle with cancer.  To make sure she was rested up for the evening’s festivities, she laid down for a nap at around noon and slept until about 2:00 p.m.  When she woke up, she immediately headed upstairs for the next two hours to get herself ready for the dance.  I realize that I am more than a bit biased when it comes to my daughters, but when she came down the stairs in her dress, it brought a tear to my eye.  We took some pictures at home, and then traveled to her friend Sophia’s house for pictures by the lake.  Then it was off to the dance where Megan actually was able to stay until the end, which was quite an accomplishment for her.  Here are some pictures of her special Homecoming experience.

Megan and her friend Sophia.

Megan and her friend Natalie.

Homecoming was definitely a highlight of this week, but Megan also received another surprising honor on Friday afternoon when a representative from the Morris Daily Herald knocked on our door with a bouquet of flowers for Megan.  She shared the exciting news that Megan had been chosen as one of three recipients of the “Women of Distinction” awards for 2018.  I am fairly certain Megan is the youngest recipient to ever receive this prestigious honor, and we are so proud of her.  She views this as yet another opportunity to share not only her story, but the story of so many other children who are fighting childhood cancer and why the disease deserves so much more than the current 4% of Federal funding for all cancer research.  Megan will be honored at a recognition luncheon in October where she will give an acceptance speech.  I am very anxious to hear how she uses this platform to further her cause of childhood cancer awareness and funding.

Speaking of childhood cancer awareness, this weekend Megan will be taking a huge step forward in her efforts.  On Friday, she is leaving for Washington D.C. for the annual Curefest weekend, which is a huge childhood cancer advocacy event.  Megan has always wanted to attend this event, but in the past, her treatments have gotten in the way.  This year, she was determined to attend so she actually took it upon herself to contact the organizer of the event to see how she could help during the weekend.  After their discussion, the event organizer actually asked Megan if she would be one of the featured speakers at their rally in front of the U.S. Capital Building on Sunday!  Megan is so excited to get the opportunity to advocate and raise awareness for childhood cancer on the national stage.  She is also thrilled for the chance to meet kids from all over the country who have been in this battle with her every step of the way.  It is hard to explain the immediate bond that Megan has when she meets a fellow teen who has fought cancer.  It’s something you have to see to even believe, so I know this weekend will be very special to her for many reasons.

Kenzi is back in the routine of classes at UW-Madison, where she is experiencing a tremendous start to her sophomore year.  She and three of her friends live in an apartment now, which she likes so much better than dorm life.  Yesterday, the UW Badgers hosted their second home football game of the year, and Kenzi tries to never miss a game.  If you have never been to a game at Camp Randall stadium, it is really an incredible atmosphere.  Megan, Deb and I were all watching the game at 11:00 a.m. yesterday when Kenzi let us know that the football program was promoting their support of Childhood Cancer Awareness Month.  Seeing these pictures really made Megan’s day, because she gets very frustrated that in her view, Childhood Cancer Awareness Month does not get nearly the attention it deserves.  I know Kenzi was proud that her university was supporting Megan and all of the other brave child warriors who are courageously fighting for their lives.

Speaking of supporting Childhood Cancer Awareness Month, Megan received an emotional surprise from the dance studio where she works.  On Wednesday and Thursday evenings, Megan works with Kim Scerine at Broadway Dance Studio.  When Megan showed up for work on Wednesday, Miss Kim and her team had set up a “More Than 4” display to support Megan and her cause.

What made the display so special was that Miss Kim had taken the time to collect pictures of Megan with many of her special friends who have fought and are fighting this tragic disease.  It was very touching for Megan to see all of the pictures…especially the picture of her with Mia, who was so special to Megan.  The evil that is childhood cancer took Mia away from Megan and the world far too early.

It is because of Mia, Sophia, and so many others that Megan is more determined than ever to end the nightmare that is childhood cancer.  We cannot continue to allow childhood cancer to inflict terror on these kids and their families.  Because of childhood cancer, we will never know what incredibly amazing things kids like Mia and Sophia could have brought to this world.  Our country has to wake up and realize that although prostate cancer is awful, how does the Federal government justify spending more on finding a cure for it than it does on all twelve childhood cancers combined?  How do we justify the fact that these kids are being treated with virtually the same treatments they would have received in the 1970’s?  How do we justify the lack of funding for childhood cancer when we know that finding a cure for childhood cancer would be the equivalent of finding a cure for both breast and prostate cancer when it comes to productive years of life saved?  How do we justify this when we know that the most precious resource our country has is our kids?  We have to do better.  We have to give our kids #morethan4.

What can you do?  The most important thing you can do is raise awareness.  Talk to your friends and family about this issue.  Call your congressman or congresswoman and tell them that our kids deserve #morethan4.  A great conversation starter is to go to the Ivory Ella website and purchase some of the “More Than 4” collection that Megan helped design.  Not only will you have a great way to start a conversation, but you will also be supporting childhood cancer research with each purchase.  When people ask you what “More Than 4” means, you can explain to them that it’s about saving our kids!!!

September is Childhood Cancer Awareness Month.  Go out and scream it at the top of your lungs.  Our kids will be forever thankful. #morethan4

Go Gold in September

September 1st marked the beginning of Childhood Cancer Awareness Month.  As Megan has traveled her own personal journey through childhood cancer, she has become painfully aware of the awful impact that this disease has on children.  Not only has Megan personally been through her own nightmare, which includes 90 weeks of chemotherapy, over 100 radiation treatments, three surgeries, a near death infection, and short and long term chemo-induced side effects far too numerous to mention; but she has also witnessed this disease take far too many of her friends at far too young of an age.  Megan’s personal experience coupled with watching her friends suffer has made her a determined and outspoken advocate for childhood cancer.  Through her research, she has been saddened to learn the sobering facts about childhood cancer and the lack of attention it receives from the Federal government and many outside cancer fundraising organizations.  However, instead of wallowing in self pity, Megan has decided to do something about it.  She has decided that she will not rest until not one more kid has to go through what she has experienced.  She will not sit idly by and watch any more of her friends die from a disease that she believes can be prevented.  That’s why this month is so important to her.  It’s another chance to spread awareness for the desperate need for more funding to support childhood cancer research.  Megan believes that together, we can end the nightmare that is childhood cancer.

Some of the statistics that motivate Megan are as follows:

• Childhood cancer is the leading cause of death by disease in children under the age of 19 in the United States.
• Incidence of childhood cancer have increased 24% over the past 40 years.  At a time when medical advancements have resulted in a decrease, or the eradication, of many diseases, childhood cancer continues to be on the uptick.
• Today, the parents of 43 kids learned that their child has cancer.  Unless you have experienced it yourself, I cannot even begin to explain how hearing those words impacts you as a parent.  That moment when I learned Megan had cancer is etched in my mind forever.
• 300,000 kids around the world will be diagnosed with cancer this year.
• One in five children diagnosed with cancer IN THE UNITED STATES will not survive.  I put our country in all capital letters, because in a country as wealthy and advanced as ours, how is this even remotely acceptable?
• Because of the archaic treatments they had as kids, more than 99% of those lucky enough to survive childhood cancer will have chronic health problems for the rest of their lives.
• Since 1980, only three drugs have been approved in the first instance for use in treating childhood cancer.  Fewer than 8 total drugs have been developed for use in children with cancer, compared with hundreds of drugs that have been developed specifically for treating adults.  As a result, for many with childhood cancer, the SAME TREATMENTS THAT EXISTED IN THE 1970’s continue today with few, if any, changes.

Considering that we are talking about our nation’s most precious resource–our kids–you would think that a priority would be placed on researching and developing treatments for childhood cancer.  Tragically, that is not the case.  The National Cancer Institute dedicates only 4% of their annual budget to childhood cancer research.  The NCI allocates more than three times that for breast cancer research.  The NCI also spends as much on prostate cancer research than on all childhood cancers combined, which is even more amazing when you consider that the average age of a prostate cancer diagnosis is 66 years old compared to the average age of childhood cancer diagnosis, which is only 6 years of age.  I have read that when you take into account the number of living years saved, curing childhood cancer would be the equivalent of curing both breast and prostate cancer.

Of course all cancers are terrible, and it is fantastic to know that tremendous strides have been made in the treatment of breast and prostate cancer.  The progress made in these areas actually gives childhood cancer advocates hope, because a primary reason such incredible advancements in breast and prostate cancer have been realized is due in large part to the tremendous Federal funding that is dedicated to researching treatments.  Not only do these types of cancers receive generous Federal funding, but they also have very powerful and effective private advocacy groups that raise awareness and tremendous amounts of funding to support this research.  When you combine high levels of Federal funding with powerful advocacy groups, it is not surprising that the medical community has discovered incredible breakthroughs with these cancers that are saving lives.  That’s what we desperately need for childhood cancer, because we know that when it becomes a priority, our nation finds an answer.  Curing childhood cancer has to become a priority, and that’s where Megan’s focus now lies.  She has learned that it all starts with raising awareness for the cause, because once that happens, the support will follow.

That’s what Childhood Cancer Awareness Month is all about.  Megan wants to see as much gold in September as we do pink in October.  She is determined to do her part, but she needs the support of everyone on Team Megan to make it happen.

Megan’s “More Than 4” collection in partnership with Ivory Ella is going strong.  If you visit the Ivory Ella website, you can see all of the merchandise that Megan helped to design.  This year’s collection includes a long sleeve t-shirt, a hat, fuzzy blanket, water bottle, and a pop socket.  Megan is so excited about this collection, because it screams her “More Than 4” message loud and clear.  Items are selling fast, so get yours today.  10% of all sales will go to support important cancer research being conducted at Luries Children’s Hospital.

During Megan’s partnership with Ivory Ella, she has needed a local photographer to take photos that Ivory Ella uses on their website.  Luckily, Tori Cumming has always been right by Megan’s side to help her out.  Tori has her own photography business and she takes incredible pictures.  In the month of September, Tori is donating a portion of her photo sessions to Megan’s fundraising efforts through Luries Children’s Hospital.  If you are looking for family photos, or any other special occasion, be sure to contact Tori to reserve a time.  Not only will you be receiving some amazing memories, but you will be supporting childhood cancer research.  Thanks Tori!!!

Kenzi is excited to be starting her sophomore year at the University of Wisconsin-Madison.  If you have been to UW, you know that home football games are quite the spectacle.  Kenzi sent me a few pictures of she and her friends getting ready to head to their home opener on Friday night.  Seeing her having so much fun makes it a little easier having her three hours away from us.  Today, she did drive home for a short visit because she had to pick up a few more things for her apartment.  Also, her Uncle Todd, Gina and cousin Danny were over for a cookout by the pool, so she wanted to see them as well.  Even though it was a quick visit, it was still great to see her.

As we move through September, please help Megan spread the word that our kids matter.  You can do this by taking every opportunity to wear gold.  As Megan says, it can be as simple as gold shoe laces, or a gold ribbon in your hair.  She was really excited to see everyone in Major League Baseball wearing gold wristbands on Saturday to help kick off Childhood Cancer Awareness month.  The hope is that someone asks you why you are wearing gold, and you can then take the opportunity to educate them about the harsh realities of childhood cancer and how our kids deserve “More Than 4”.

Until next week…

#morethan4

September 1st will mark the beginning of “Childhood Cancer Awareness Month”.  During Megan’s nearly four year journey with childhood cancer, she has become acutely and painfully aware of the uphill battle facing all of the brave kids fighting this terrible disease.  All forms of cancer are terrible, and no one deserves to be struck by the disease’s destructive grasp.  However, due to the tremendous attention paid to certain types of cancer such as breast and prostate cancers, massive amounts of Federal and private dollars have been dedicated to working towards effective treatments and cures.  Predictably, the medical profession has made incredible strides in treating these types of cancers, which is a fantastic accomplishment that has saved many lives.  Unfortunately, childhood cancers tend to take a backseat when it comes to attention and as a result, it also misses out on Federal and private funding sources to support research.  There are a number of factors that play into this, such as the fact that there are many more cases of breast and prostate cancer that childhood cancer.  It is also difficult for the medical community to conduct experimental research on children.  Although there may be obstacles in the way, Megan has made it her mission to bring awareness and funding to the horrors of childhood cancer.  She has not only been through the suffering caused by archaic treatments herself, but she has watched far too many of her friends make the ultimate sacrifice at the hands of childhood cancer.  With each of her friends who passes away, and with each new friend who contracts the disease, Megan’s determination and motivation to end this nightmare grows more and more fierce.  She is not only advocating for herself, but she is also advocating in the memory of her dear friends Mia, Sophia, and Isaiah who were taken far too early.  She is advocating for her buddy little Ellie who is only three years old and has been through more adversity than most adults.  She is fighting for Olivia, Ellie (from London), Evie, Sophia, Kasey, Shauntelle and so many others.  She is fighting for a cause so important to her, and it should be equally important to everyone, because we are talking about our most precious resource…our kids.  September is a month to celebrate all of these brave warriors and raise awareness for childhood cancer so that no more kids and their families will have to go through what Megan has been through.  This is why she fights.  This is why she is so passionate.  This is why she is more determined than ever to make a difference.  This is why Childhood Cancer Awareness Month is so important to her…and she has big plans in store.

Last September, Megan worked with Ivory Ella to design a line of merchandise aimed at bringing awareness to her story and childhood cancer.  That collaboration with Ivory Ella was wildly successful as together they raised $30,000 for Boston Children’s Hospital.  This year, Ivory Ella contacted Megan again and asked if she would partner with them to design another shirt and other merchandise for Childhood Cancer Awareness Month.  Of course, Megan jumped at the opportunity, but this time she wanted the design to be a little different.  Her first year’s design focused on what her journey meant to her, but this time, Megan wanted the design to no longer be about her.  Instead, she demanded that the design focus on childhood cancer in general with the goal of celebrating and raising awareness for ALL of the brave kids fighting this ridiculous disease.  Megan spent a couple of weeks designing her products with the Ivory Ella team, and she also participated in a couple of photo shoots and a video interview.  During the video and photo shoots, Megan was adamant that both be conducted at her hospital and include other kids who have been treated there.  Megan’s “More Than 4” line of merchandise is available now on the Ivory Ella website.  If you check it out, I think you will agree that Megan hit it out of the park with this design.  Her package includes a long sleeve t-shirt, plush blanket, hat, water bottle, bracelet and pop socket.  A portion of all sales goes directly towards Megan’s fundraising efforts to support the research being conducted by Dr. Walterhouse at Luries Children’s Hospital in Chicago.  If you want to purchase any of her products, I would act fast because last year they sold out in just a few days.  Here are a few pictures of Megan modeling her products.  You can also find her pictures and a video on the Ivory Ella website.

These are a few of the kids Megan asked to join her from  Central DuPage Hospital Pediatric Oncology.  Her buddy little Ellie is just to Megan’s right.

During Megan’s photo shoot and interview with Ivory Ella at Central DuPage Hospital, a reporter from The Daily Herald was there and recently published this awesome article about Megan’s journey.  I thought the author did a wonderful job of capturing how cancer has changed Megan from the person she was in December, 2014 to the powerful advocate she is today.

About a year ago, Megan also connected with a company called “Healing Heals”, which is  run by two amazing women–Sidne and Lauren.  They design fun shoes and for every pair sold, they donate a pair to a cancer patient.  Their models are cancer survivors, and Megan did some modeling for them last year.  This morning, Healing Heals was being featured on the ABC 7 Chicago morning news, and the owners asked Megan if she would come and model the shoes on TV for them.  Of course Megan was thrilled, because not only was it for a great cause, but it was also another chance for her to raise awareness by showing that Healing Heals also supports girls with childhood cancer.  Although she was only on TV for a few seconds, Megan had an amazing time meeting and talking with other cancer survivors.  Here is a link to the segment from this morning.  I encourage you to check out their products, because Megan tells me their shoes are pretty awesome.  Here is a picture of Megan with Sidne and Lauren from Healing Heals at the ABC 7 Chicago set.

Although we made a trip last weekend to move a few of Kenzi’s things back to college, today was the final move-in day.  Kenzi has now officially moved in for her sophomore year at the University of Wisconsin-Madison.  We left at about 12:30 p.m. to make the three hour drive to her new apartment.  She is so happy to be out of the dorms and into an apartment with three of her friends.  It was so nice having our entire family together all summer, and even though we will miss Kenzi terribly, we could not be more excited for her.  UW is such a dynamic university, and we are so proud of everything Kenzi is accomplishing there.  It’s always hard to say goodbye, but it’s comforting to know that she made the right college decision for herself.  Before she left for school, she had to say goodbye to her sister…and of course the pets.

Kenzi in the bedroom of her new apartment.

Megan and Kenzi both follow the social media account of Doug the Pug.  I didn’t know much about it, but Megan has often shown me pictures of the dog that she thinks is about the cutest thing in the world. In fact, Megan asked for a Doug the Pug calendar for Christmas last year.  Recently, the girls heard that Doug the Pug was going to be at the Oakbrook Mall, so of course they had to go.  On Saturday morning, Deb and the girls headed up and waited nearly two hours to meet the infamous Doug the Pug.  Here are pictures of the girls with Doug…and of course Deb couldn’t resist getting in on the action 🙂

September 1st marks the start of Childhood Cancer Awareness Month.  As Megan says, it’s a time for all of us to remember that no one deserves cancer, but especially kids don’t deserve cancer.  We have to do better by our kids, because our kids deserve far more than 4% of Federal funding for cancer research.  Get ready, because you are going to be hearing a lot from Megan in September.  Our shy little 13 year old is now a 17 year old with a determined, motivated and powerful voice aggressively advocating for all kids fighting childhood cancer.  She plans on ending this disease, and considering what she has already accomplished, who am I to doubt her.

“The ones who are crazy enough to think they can change the world are the ones who do.”       Steve Jobs

The Senior Year

It was nearly four years ago when we had no idea what the future held for our precious 13 year old daughter.  After being diagnosed with Stage 4 Alveolar Rhabdomyosarcoma on December 30, 2014, Megan’s doctors pulled no punches in telling us that her case was one of the worst they had ever encountered.  She had multiple tumors all over her body, including in her bone marrow.  We fully understood that her prognosis was grim.  I also spent way too much time researching the internet to learn the sobering statistics that accompany Stage 4 ARMS.  However, at that point, what we didn’t realize was the fight and resolve that lived within our shy little 13 year old girl.

On Friday, Megan reached another milestone in her recovery effort as she attended school on Day #1 of her senior year at CCHS.  Granted, Megan does not have enough academic credits to officially be considered a senior, but that’s not the point.  The important and amazing thing is that she was able to walk through the doors to her school on Friday to start her senior year.  The fact that she was able to reach this landmark event is due to her incredible medical team, the undying support of everyone on “Team Megan”, and of course, Megan’s tenacity, positive attitude and mental strength.  Taking her picture that morning was an emotional moment that I will never forget.

Megan is wearing her LINK Leader shirt. She is part of an organized group of upperclassmen who help the freshmen become acclimated to CCHS.

When she got to school, Megan got a picture with her good friend Katelyn.

She also got a picture with another of her good friends, Sophia.

Although Megan is well behind her peers in academic credits, she is more focused that ever on graduating with her class.  Since she is not currently in treatment, she has been aggressively working through a program at Joliet Junior College that allows her to catch up on credits.  We have been so proud of her, because she is working so hard to reach her goal of graduating in May.  This weekend, she completed 14 chapters of a science class she is taking!  It seems like every time I look at her, she has a textbook in her lap.  Although it will be an uphill climb to reach her goal, I have learned to never sell Megan short.  Once she sets her mind to something, it is going to happen.  Considering what she has been through over the past four years, the fact that she just might graduate with her class would be a lesson in courage and determination.  It will be triumphant moment when she walks across that stage in May in her cap and gown as a graduate of Coal City High School.

Speaking of school starting, our family drove to Madison, Wisconsin today to help Kenzi move into her apartment.  She drove up last Monday night with a carload of stuff for her initial move-in, but since her classes don’t start until September 5, she decided to come back home for a few more days before moving in for good.  Today, we decided to head up and meet with a couple of her roommates to conduct a more thorough move-in.  We are so happy that she is moving into an apartment this year.  Kenzi loves to cook, so having a full kitchen is something she is really excited about.  Her apartment is beautiful with lots of natural light, and she is in a great location.  We were happy that she decided to come back home with us for a little longer before she heads back for good to start her sophomore year as a Wisconsin Badger.  UW is such an incredibly dynamic university, and we are so happy that she is able to be a part of it.  Although we really miss her when she is gone, we could not be more proud of everything she is accomplishing as a college student at a Big Ten University.

September is Childhood Cancer Awareness month, and Megan has been very busy with lots of projects and partnerships aimed at raising awareness for this awful disease.  As anyone who follows this blog knows, childhood cancer only received 4% of all Federal funding for cancer research, which is unacceptable to Megan.  Not only has she fought her own battle, but she has watched far too many of her friends lose their battles because of the archaic and nearly barbaric treatments that these brave children receive.  Many of the chemo drugs used to treat Megan are 20 years old, and there have been very few new treatment options made available for these kids.  During the same period of time, the medical community has made tremendous breakthroughs in the treatments of many adult cancers including breast and prostate cancer.  Why is this the case?  In large part it is due to the huge amounts of funding that the Federal government and private organizations have dedicated to researching cures.  In order to save these kids, we need a similar focus on childhood cancer.  All forms of cancer are awful and no one should ever have to deal with this awful disease, but Megan gets very frustrated that virtually no one realizes that September is Childhood Cancer Awareness month, and that the color of the Childhood Cancer ribbon is gold.  However, during the month of October, the color pink is everywhere.  The awareness given to breast cancer is absolutely awesome, and it’s made a huge difference in securing funding for treatment.  Megan is determined to see that same level of awareness brought to childhood cancer, and she is using multiple avenues to reach her goal.

About a year ago, Megan partnered with Ivory Ella to design and develop a childhood cancer shirt and other childhood cancer merchandise.  She is so excited that Ivory Ella has once again partnered with her to design a new line of childhood cancer items which will be released very soon.  Last year’s design focused on Megan’s own personal journey and what it meant to her.  This year, Megan was adamant that the focus not be on her, but rather on childhood cancer in general.  She wants to use this year’s design to bring attention to all of the brave kids who are fighting childhood cancer across the world.  Over the past couple of weeks, she has been very busy working with Ivory Ella to get the line ready for the big reveal, which will be happening in the next few days.  Stay tuned to this blog and to the Team Megan Facebook page for information on the big release.  Last year, her items sold out in a day before they were able to get more of her line out of production.  She is hoping for a similar demand this time around, so keep your eyes and ears open for the big release.  I think you will really like what she has designed, and 10% of all sales will go towards Megan’s fundraising effort at Luries Children’s Hospital.

On Wednesday, September 12, Megan is also partnering with the Chicago Cubs for their inaugural Cancer Awareness Night.  Thanks to the Cubs and the very generous Jenny Dinelli, the Cubs have agreed to partner with Megan to make this exciting event possible.  I originally posted about this a couple weeks ago, and as of last week, all 360 available tickets have been sold!!!  It will be so exciting to see all of the “Team Megan” supporters out there in left field with their bright neon shirts to raise awareness for childhood cancer.  Megan will even be on the field for the pregame ceremonies!!!  It should be quite a night as we support all kids fighting this dreaded disease.

It’s been another good week for Megan and the entire Bugg family.  Another school year has started, which means Deb is back teaching (and she loves it!); I have welcomed all of the students and staff back to Coal City School District; Kenzi is preparing for her sophomore hear at UW; and Megan walked through the doors of CCHS as a senior.  We are truly blessed.  Until next week…

 

Everybody In

Over the past four years, Megan has fought so hard to get to this point in her life.  Although she is still fighting a small tumor in her chest, she is getting stronger and healthier with each passing day.  Although we could not be more proud of the courage and tenacity Megan has shown throughout her battle, we also know full well that she has never been in this fight alone.  The love and support she has received from everyone on “Team Megan” has kept her going from the very beginning.  Over this long and arduous journey, Megan and our family have never felt alone.  Every single one of you has played a part in lifting Megan to where she is today.  As I type this while watching the Chicago Cubs play the Washington Nationals, I am reminded of the Cubs slogan for 2018:  Everybody In.  From the very beginning of Megan’s Journey, it seems like everyone on Team Megan has been in it with her from the beginning…and that’s what it takes to beat a foe as formidable as cancer.

Speaking of the Chicago Cubs, Megan was very excited to recently learn that she will be partnering with them on the very first “Cancer Awareness Night” being held at Wrigley Field on Wednesday, September 12.  This all came about thanks to Jenny Dinelli and the Chicago Cubs organization.  Jenny held a “Light Up Left Field” event this summer to support Megan’s cancer research fundraising effort.  When she and 250 others showed up to the left field bleachers in Wrigley wearing bright neon yellow shirts, the Chicago Cubs wondered what was going on.  Once they found out about the cause, the Cubs contacted Jenny about partnering with her and Megan on another event, which launched their first “Cancer Awareness Night”.  Megan is so excited about this event, because not only will it be raising awareness and money to support childhood cancer research, but she will also be on the field to participate in the pregame ceremonies.  Although tickets are going fast, there are still some available, and they are on a first come, first serve basis.  You can get a ticket to the September 12 Cubs vs. Brewers game and an event t-shirt for $60.  Thanks again to the Chicago Cubs and Jenny Dinelli for making this event possible.  September 12 is going to be a very exciting evening!!!  Ticket ordering information can be found below…but remember…tickets are going fast and their are only a limited number of seats in our block.  I hope you can join Megan and the Chicago Cubs as they once again “Light Up Left Field” at the inaugural “Cancer Awareness Night” at Wrigley field on Wednesday, September 12 at 7:05 p.m. #everybodyin

This is a picture of the “Light Up Left Field” event held earlier this summer.

Here is the t-shirt you will receive with your ticket order.

Some of you may remember about a year ago when Megan partnered with a company called “Ivory Ella” to design a childhood cancer shirt and other items to raise money for childhood cancer research.  The sales far exceeded Ivory Ella’s expectations as they sold out quickly and had to produce multiple other runs of the shirts.  Since that time, Megan has kept in contact with the staff at Ivory Ella and they recently reached out to her about designing another shirt to support childhood cancer.  The first shirt Megan designed was really focused on what her personal journey with cancer meant to her.  This time, Megan wanted the design to be much bigger than her.  Instead, she wanted this design to focus on ALL kids fighting childhood cancer in an attempt to raise not only more funds, but more awareness for the cause.  Megan is still haunted by the fact that childhood cancer only receives 4% of Federal funding for all cancer research.  She is determined to change that, and her partnership with Ivory Ella is providing yet another avenue for her to spread her awareness message.

Ivory Ella is going to be releasing the new design very soon, but they wanted to film a promo video of Megan where she not only tells her own personal story, but also shares why she is so passionate about spreading awareness for childhood cancer.  Megan had all sorts of ideas of what she wanted in the video, and Ivory Ella was very accommodating in making her vision a reality.  Megan really wanted to film part of the video at her hospital to highlight her caregivers and some of the other kids who are valiantly fighting this vicious disease.  On Friday, representatives of Ivory Ella and Megan descended on Central DuPage Hospital to film the first half of her promo video.  Megan was so excited that so many of her nurses came in to participate in the video.  She also was thrilled to see some of the pediatric cancer patients who were there to take part in spreading the word about the plight facing childhood cancer.  Here are a few pictures of the video and photo shoot.

Here is Megan starting her interview in the CDH Clinic where she has spent countless hours over the past four years.

Megan being interviewed in another room at the CDH Clinic.

Megan with Dr. Hayani. He was the first person to break the news to Megan that she had cancer. From that moment on, he has been by her side.

This is Megan’s special buddy, little Ellie. We are so happy that Ellie is officially in remission!!!

Megan and little Ellie have a very special bond 🙂

Here are a few of the other brave kids who have fought the battle and want to help Megan raise awareness for childhood cancer.

Speaking of special…these people are very special. From left: Bridget, Megan, Mariel, Jodi and Kathy. I can barely talk about this group of nurses without getting emotional. I could share a special story about each of them and how they have impacted Megan’s life. We love them all like family.

Megan’s busy weekend with Ivory Ella did not end on Friday, because on Saturday morning, the Ivory Ella reps came to our house to continue their video interview with Megan and our family.  It took them about an hour to turn our living room into their videography room.  Once they started the interview, Megan did a masterful job answering their questions about her own story and her passion for childhood cancer awareness.  They also shot some video of Megan and Kenzi doing some of their favorite things together, such as riding bikes, baking cupcakes, or just hanging out together on the couch watching YouTube videos.  It turned out to be about a five hour process, but I think the end product will be well worth it.  Megan is so excited to soon be unveiling her new line of Ivory Ella childhood cancer awareness merchandise.  If it is anything like the last time, you had better get online soon after they announce the release, because I think these products will go fast.  I will be sure to post the release date here and on the Team Megan Facebook page as soon as the date is finalized.  Here are a few pictures of Saturday’s video shoot at our house.

Jake was the Ivory Ella representative who was in charge of this video shoot. He is such a nice and genuine person.

The sound and video men getting things ready for the interview.

Megan in the midst of the interview.

Filming Kenzi and Megan hanging out on the couch.

It was fun watching the girls frost cupcakes while they were being filmed 🙂

They even filmed them riding bikes together. That camera man was pretty talented 🙂

It’s been another great week for Megan and our family.  We still have Kenzi with us for a couple more weeks before she heads back to the University of Wisconsin.  She and three of her friends are living in an apartment this year, so she is actually driving up Monday night to stay with her friend Ellyn prior to the August 14 move-in day.  She is coming home Tuesday night before our family heads back up on Sunday for her final move-in.  Her classes actually don’t start until September 5, so she has some time before she really has to be back.  However, I think the fun of a dynamic college campus will have her back in Madison a good week or so before her classes actually start.  If you have ever been to the campus of UW, I’m sure you would understand why she wants to get back a little early 🙂  It will be a big change not having her at home with us, but we are so proud and excited for her.  Given all our family has endured over the past four years, the fact that Kenzi has kept it all together so well is nothing short of amazing.  It’s a testament to the strong, independent woman she has become.  Today, she and her boyfriend Nick took a trip to the Brookfield Zoo.  Kenzi was pretty excited to feed a giraffe 🙂

Megan is still working hard to complete her high school credits through the Early Leavers program at JJC.  Although she is only required to attend one night a week, she has gone three nights a week for her first two weeks.  I have learned that when Megan sets her mind to something, she will not be denied.  We are so proud of her!  She also starts school at CCHS this Friday.  I really cannot believe this is her senior year.  considering the news we received on December 26, 2014 about her cancer diagnosis, the fact that she has reached this point in her life is a true miracle.  We are so blessed.

Until next week…