It’s a Marathon; Not a Sprint

December 26 of this year marks 5 years that Megan has been fighting Stage 4 Alveolar Rhabdomyosarcoma.  Her battle has taught our family so many valuable lessons, and most of those lessons have been gleaned from the determination, passion, grace and dignity Megan has displayed throughout her fight.  There have been so many times over the past five years where I have been faced with a situation and I want to have an immediate reaction…but then I take a breath and think back to lessons Megan has taught me and I end up making a much better decision than I would have normally made without her wisdom.  In the past, when things didn’t go as planned, I might of become extremely frustrated with those around me.  However, Megan’s Journey has taught me that you can’t sweat the small stuff, because in the long run, it just doesn’t matter.  There are so many more important things in life to worry about that those little day to day inconveniences or frustrations.  Megan has also taught me that sometimes the best laid plans just don’t work out.  During her five year journey, there have been countless times where she has planned something, but her cancer had other ideas.  As a result, she has missed out on vacations, shopping with friends, going to work, and countless other opportunities.  Of course Megan could always respond by being mad at the world for the hand she has been dealt, but instead, her attitude has become “there’s no use worrying about things you can’t do anything about.”  Megan’s Journey has also taught our family to celebrate the small victories…no matter how small they may seem.  After her chemotherapy treatments, it’s a victory when Megan can find the energy to get herself off the couch; take a bath; or just get to sleep for the night without medication to ease her discomfort.  About four days after her chemotherapy treatments, there is nothing more joyous than see her finally wake up with that infectious smile back on her face.  That’s the signal that our girl is back and ready to make the most of the next three or four days until she goes through it all over again.  Finally, Megan has taught all of us the importance of staying steadfastly focused on your goal.  Her goal is to beat cancer, and no matter how difficult and trying life may get, she never takes her steely gaze off of that finish line.  Watching Megan traverse this arduous journey has taught me so many valuable lessons, and today, I needed to call on all of those lessons to turn a tough day into something positive.

Those of you who follow this blog know that running is one of my past times.  Not only does it make me feel better and help relieve stress, but I have always enjoyed the thrill that comes with a competitive race.  After Megan’s initial diagnosis, I really lost my desire to run because my mind was on her treatment.  It was also very difficult to find the time between Kenzi’s high school games and Megan’s treatment schedule.  As a result, I ran very little and it took some time to realize how much I missed it.  Last spring, Megan was the keynote speaker for the Cal’s Angels Annual Gala.  During the event, Cal’s Angels was recruiting for their Chicago Marathon team to raise money for childhood cancer.  When they scanned the 1000 people in attendance looking for volunteers, my hand suddenly went up.  Even though I hadn’t run a marathon in five years, and was probably in the worst shape I had been in in the past 15 years, I just couldn’t help myself.  Running in honor of Megan and all kids fighting this dreadful disease was just the motivation I needed to get back in shape and compete.  For the past 30 weeks, I trained religiously because I had my “why” back.  I had a renewed focus and reason for those 4:30 a.m. alarms and those long early morning runs.

Of course, I quickly found out that training for a marathon at 45 is a lot different than training at 52.  I was experiencing little aches and pains that I had never experienced before, which occasionally caused me to trade a run for a bike ride.  Also, a nagging left foot pain caused me to miss two weeks of training on doctors orders.  Still, I felt good about where I was coming into today’s Chicago Marathon.  I felt like I was in good shape, and I felt so motivated knowing that I was running for Megan and all kids fighting childhood cancer.  However, remember what I said about the best laid plans?

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The Cal’s Angels Chicago Marathon team photo taken this morning prior to today’s race.

My race started great and for the first 15 miles, I was right on track.  Then I started to feel my left foot again and about three miles later my calves cramped up so bad that I could barely run.  As a result, I had to throw my goal time out the window and just try to fight to the finish line.  In the past, knowing the very difficult few miles that were left ahead of me, I would have been tempted to drop out and live to fight another day when my goal time could be reached. However, I thought about the lessons Megan has taught me, and it motivated me to get to the finish line no matter how long it took.  Sure…my plans didn’t work out as expected, and sure…I could have felt sorry for myself because of the cramps and sore foot, and sure…I could have easily taken my eyes off the real goal, which was to finish the face.  Prior to Megan’s lessons, I’m fairly convinced all of those things together would have given me the excuses I needed to quit…but not anymore.

With Megan’s moral support, I made it to the finish line…and although it was an awful last 9 miles, and I missed my goal time by a long shot…I’m okay with it, because what really matters is that I finished the race and more importantly, I raised $5,000 for childhood cancer!  You have to keep your eye on the prize.

I was so appreciative of Deb and Megan coming up with me to watch the marathon.  For Megan, all of the walking to see me in a couple different spots was probably as tough on her legs as the marathon was on mine.  But of course, she didn’t complain and was there to give me a hug when I got back to the hotel room.  Now I will try to let this old body recover, but while doing so, I will remained focused on the positives…because life doesn’t always go the way you planned.  It’s how you react to adversity that will determine your success and happiness in life.  A very wise young lady taught me that.

There is no rest for Megan as tomorrow morning, we leave the house at 7:00 a.m. to take her to her first chemotherapy treatment of this new three week round.  Let’s hope that she is able to tolerate the treatment and find some peace this week.  In the meantime, Megan will continue to teach us all that life is precious, and that we should all be thankful for the many positives in our lives.  Although Megan has been through more than any kid should ever have to endure, I will never forget her amazing words during an interview she once gave to a local newspaper.  She said,

“I believe everything happens for a reason, and I was given this disease to make a difference.  I am thankful for my life. I wouldn’t change a thing.”

We should all be so wise.  Until next week…

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That Elusive Light

It seems like the last three weeks have all been huge for Megan.  She ended Childhood Cancer Awareness Month on a high with an emotional and powerful trip to “Curefest” in Washington, D.C. as well as numerous other fundraisers she participated in to raise money and awareness for childhood cancer.  She also has been going through various scans for the past three weeks so her medical team could get an accurate gauge of how this new experimental chemotherapy protocol is working for her.  Three weeks ago, she got excellent results from her chest and neck CT, which was followed two weeks ago by more great news from her brain MRI.  Although both scans showed no negative surprises, the brain MRI still showed the mass at the base of her skull, and even though it had not grown, her doctors still wanted to make sure there was no cancerous activity going on.  As a result, she underwent a full body PET scan on Monday, and even though we felt encouraged by the good results from her CT and MRI, there is always that nagging concern with any scan that results in that dreaded “scanxiety”.

Megan had a very busy day on Monday as she had to be at the CDH clinic at 9:15 a.m. so they could access her port prior to the PET scan.  Megan has had her chest port for nearly five years, and lately, it has been giving some of the nurses who don’t access ports everyday some problems.  When Megan had to go to the emergency room two weeks ago with her fever, they couldn’t access her port, which is really quite painful.  The CDH clinic nurses access these ports multiple times everyday, so they are experts.  Whenever time allows, they generously allow her to come to them first so they can access her and she doesn’t have to go through the pain that she experiences whenever someone cannot access her.  After she was accessed, we then drove to the cancer center in Warrenville where she received her PET scan.  For a PET scan, they inject a radioactive material through her port and then Megan has to lay completely still for an hour before they wheel her into the 45 minute scan.  From start to finish it’s about a two and half hour ordeal.  Right after that, we drove back to the CDH clinic because Megan was scheduled for her second week of chemotherapy for round #6 of her treatment.

As I mentioned in last week’s blog, even though Megan’s CT and MRI results came back very good, her medical team decided that it would be best if she continued with her chemotherapy cycles for at least 18 more weeks…or 6 more full cycles.  Although the side effects are rough, her blood counts are still recovering well, which means her body is able to tolerate more chemotherapy.  Unfortunately, due to a ridiculous lack of Federal funding to support research for less toxic treatments, this is all our kids have to fight off this awful and evil disease.  Hopefully, with kids like Megan and her friends fighting on the front lines, our politicians might actually start to pay attention to the powerful voices of these passionate and desperate kids.

Megan’s current treatment protocol calls for her to receive two chemotherapy drugs in week one; two more in week two, and then she gets to recover in week three before starting all over again.  Although she experiences some side effects from her week one treatment, it always pales in comparison to what she goes through with week two.  After a long day from her PET scan, we got to CDH for her week two treatment.  By that time, the stress of going through the PET scan and the anxiety that comes with waiting for the results had worn Megan out.  After we met with Dr. Hayani and they started her chemotherapy infusion, she was in sore need of a nap.  Sometimes, the best way to get through the tough times is to just sleep it off.

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On Tuesday morning, Megan slept until almost 3:00 p.m., which is fairly common for her the day after chemotherapy.  However, she awoke to great news as Dr. Hayani called with the results of her PET scan.  He said that the PET showed no cancerous activity in her body!!!  Even the mass that continually shows up on the brain MRI did not light up on the PET scan!!!  Dr. Hayani believes that it could be a treated tumor that is just going to stay inactive in her body.  The great PET scan news made her 3 for 3 with her scans, which means that once again Megan is defying all of the odds and amazing her doctors.  That girl just refuses to lose!!!

Although we were all thrilled with the good news, Megan still had a couple rough days ahead as she tried to recover from her week #2 treatment.  Tuesday evening, all day Wednesday, and Thursday morning were pretty miserable for Megan.  Although she has learned what she has to do to keep from throwing up from chemotherapy, there are still so many side effects that are completely out of her control.  She still gets nauseous, but with this particular chemo concoction, the worst part for her is the extreme bone pain and total body aches.  She says that everything hurts, and if we touch her she draws back because it even hurts just to touch her skin.  She also takes a steroid that is meant to address some of the side effects of these chemotherapy drugs, but it causes her to feel so hot that her skin turns red.  Over the past five years, Megan’s pain threshold has been tested such that it is through the roof.  What would keep most everyone else in bed for the day is just another annoyance to her as she attempts to live each day to the fullest.  However, on Wednesday, there were times where she just curled up in bed and sobbed from the pain.  As a parent, there is nothing worse than watching your child hurt and you are completely helpless to make it go away.  Even though Deb and I have dealt with this for the past five years, it never gets any easier.  I can’t tell you the sense of relief when Megan is finally able to get to sleep and reach some type of peace.  Childhood cancer is a brutal fight that no kid should ever have to endure.

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Megan usually starts to recover the evening of the third day following treatment.  I know she is always motivated by the chance to go to work at Broadway Dance Studio on Thursday night, because she loves seeing Miss Kim, Emma, Jaime, and all of the girls at the studio.  She was still not feeling well enough to drive, but she said she wanted to go to work if we could take her…which of course we did.  By Friday morning, we had our daughter back as she seemed to recovered once again from the grasp of chemotherapy.  The reason I knew she felt better was that she was anxious to make some plans for the weekend.

Fall is Megan’s favorite time of year, so she was very anxious to go to Tanner’s Apple Orchard, which she discovered last October.  She likes to see all of the animals and shop all of the fall goods in their store, but most of all, she likes to ride the wagon out to the apple orchard to pick her own apples.  Today was the perfect day to head to the orchard, and we had so much fun together.  Here are a few pictures of today’s adventure.

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One very important lesson this journey has taught our family is to not take a single moment for granted.  When Megan goes to her chemotherapy treatments, she walks in the door knowing full well that the next three days are going to be a living hell.  However, somehow she keeps her eye on that light at the end of the tunnel.  In the short term, she knows that once she gets through those three days, she will try to pack a week’s worth of activity into the three good days she gets before she has to go back and do it all over again.  In the long term, she knows that going through this torture is what she has to do to beat cancer and reach that light.  It’s that light at the end of the tunnel that might flicker for some, but for Megan, it seems to shine so bright.  She knows its there; she never takes her eyes off it; and someday she knows she will reach that elusive light.

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It Takes More Than One Month

It’s been a whirlwind, but the end of September is upon us.  September was “Childhood Cancer Awareness Month”, which is a time for all of us to recognize the many brave kids who have fought and are fighting this awful disease.  It’s also a time for us to bring awareness and recognition to the fact that childhood cancer research is woefully underfunded by our Federal government and completely ignored by the big pharmaceutical companies.  I’m not sure if it’s just because I am so much more in tune with the issue now, but it seems to me that these kids are really starting to make a difference as I am seeing more and more childhood cancer references throughout our culture.  Maybe people are starting to realize that losing seven kids every day to a disease where these children had no choice in the matter deserves our attention.  Maybe people are starting to realize that today, the fact that the parents of 43 more kids learned that their child has cancer deserves our attention.  Maybe people are starting to realize it’s unacceptable that since 1980 only three new drugs have been approved for use with kids fighting childhood cancer.  Maybe people are starting to realize that curing childhood cancer would save as many productive years of life as curing breast and prostate cancer combined.  Maybe people are starting to realize that our country’s most precious resources, our children, deserve more than 4% of all Federal funding made available to research cures for cancer.  I truly believe that Megan and her brave cancer fighting friends have decided they will no longer wait for the adults to see the light.  Instead, they have decided to shine that light so bright that it can no longer be ignored.  The month of September has been exhausting for Megan and so many of her friends as they worked so hard to raise awareness and funding for childhood cancer…but it takes more than one month per year.  It’s up to all of us to continue the momentum they have started and begin taking up the fight on their behalf.  How unfair is it that while Megan is undergoing chemotherapy treatment for her disease that she is also trying to raise funds to support the medical research that could save her life?  And Megan is not the only ones.  While we were in D.C. for Curefest, there were so many brave kids and their families who were there while in the midst of treatment.  Why?  Because history has shown if they don’t do it themselves, no one will do it on their behalf.  That has to change, and the moment for that change is now.  Megan has already been through nearly five years of this brutal battle and nothing can change that.  However, what we can change is helping her achieve her dream that no more kids will have to experience the physical and mental brutality that she has been through.  Our country has shown so many times before that when we set our collective minds to something we can achieve anything.  Why can’t we set our mind to saving our children?  If we do, Megan’s dream and the dreams of so many of her brave friends will become reality.  Please don’t let the momentum stop as September fades…too many kids are counting on us.

It’s been another eventful week as Megan attempted to balance her chemotherapy treatments with all of her childhood cancer awareness events.  Megan returned from Curefest late Sunday night, and at 9:00 Monday morning she was off to CDH for her chemotherapy treatments.  As I reported last week, we received tremendous news on Megan’s CT and MRI scans as her tumors have disappeared.  The only one that remains is the spot on the base of her skull that has remained unchanged since she started this experimental treatment 16 weeks ago.  On Monday, we met with Dr. Hayani who said that her medical team had decided that it would be best if she continued with this treatment for another 6 cycles, or 18 weeks.  Although she is responding very well, her medical team believes that as long as she is tolerating the treatments and her blood counts are recovering, then she should continue with the treatment.  They also ordered a PET scan for this Monday morning to determine if the one remaining spot at the base of her skull is showing any cancerous activity.  If it is, they will most likely go after it with gamma knife radiation.  We will know more once we get the scan results back on Tuesday.

Her chemo treatments always cause Megan to be extremely fatigued, but she really wanted to feel well enough to attend the 5th annual “Megan Bugg Night” put on by the Coal City High School Volleyball team.  When Megan was in 7th grade, Pam McMurtrey was her coach, and that was the last time she was able to play her favorite sport because she was diagnosed with cancer during 8th grade when volleyball practice had just started.  Coach McMurtrey soon became the high school head coach and ever since she has conducted a “Megan Bugg Night” to raise money for childhood cancer research.  Megan was so flattered because even though she graduated from high school last year, Coach McMurtrey still asked if she could host the event.  As always, the night was very special as Megan gave a passionate speech prior to the game about the importance of raising money for childhood cancer research.  There were also numerous raffles, a bake sale, and other activities.  To complete the awesome night, the Coalers won the match!  Here is a picture of Megan and Coach McMurtrey after the game.  We are so thankful to her and the entire Coaler volleyball program for their continued support of Megan and childhood cancer.

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At the volleyball match, the Coalers’ public address announcer Don Phillips announced that as a part of the raffle, he had a special quilt made of many of the shirts taken from the rich history of Coaler volleyball.  It was really fantastic as it even had the signatures from the players who went to state on past Coaler volleyball squads.  It just so happened that Don’s wife won the raffle for the quilt and during the match he announced that they were donating it to Megan.  That was so special of them and Megan was thrilled.  Here is a picture of the Phillips and Megan with her quilt.

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There never seems to be dull moment with cancer.  On Wednesday evening, I had a school board meeting.  When I got home, Deb said Megan was feeling sick, so she decided to go to bed early.  At about midnight, Megan called us into her room to tell us that she felt hot.  We took her temperature and it was 101.5, which is bad news for someone fighting cancer.  Chemotherapy treatments cause the white blood cell count to drop, which makes her very susceptible to infection, which can be extremely dangerous.  In March, 2015, an infection landed Megan in the ICU for 9 days, so we don’t take fevers lightly.  In fact, her doctors have said that if her fever hits 100.5 we are to call them.  We quickly uncovered her in her bed to see if it would cool her off.  About 30 minutes later we took her temperature again and it reached 101.8, which meant it was time to page her oncologist.  Dr. Kar told us to take her to the CDH ER for blood work and then they would determine whether or not she would be admitted for antibiotics.  We left the house at about 1:00 a.m., but by the time we got to the hospital, her fever started to come down.  Here she is with her mask on waiting to get checked into an ER room.

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She still felt miserable with more bone pain than usual, but with her fever down, it was just a matter of her blood counts as the deciding factor of whether or not we could take her home.  At about 4:00 a.m. her counts came back okay and they said we could go home as long as we monitored her temperature closely. The combination of a long night at the hospital and her already not feeling good caused her to sleep until 2:30 p.m. Thursday afternoon.  Although she still felt awful, her temperature never came back which was a blessing.

On Saturday, Megan had another special event planned with Broadway Dance Company.  The owner, Kim Scerine, and Megan planned an entire day’s event to fund raise for childhood cancer research.  Megan contacted her good friends Emma and Ava Blaser, who are tremendous dancers.  Ava is a childhood cancer survivor and Emma is her older sister.  They both agreed to come down and conduct master dance classes for anyone who wanted to come with the $20 entry fee being donated to childhood cancer research.  Megan was so happy Ava and Emma were coming, and all of the dancers loved learning from them.

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Broadway Dance Company also sold hotdogs and had a dunk tank to raise money.  Here is a picture of Megan’s second family (the dance instructors) after the dunk tank festivities.

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Megan little buddy Fitz is in the picture also.

The Illinois Secretary of State Jesse White and his world famous “Jesse White Tumblers” also showed up at the event to wow the crowd.

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It was an amazing day and Megan had a blast.  Thanks so much to Kim Scerine, Emma and Ava Blaser, Jesse White and everyone who supported this childhood cancer fund raising event.

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Although Megan was exhausted after Saturday’s event, she didn’t have much time to rest as we then headed down to meet Kenzi who was in Bloomington for the weekend.  It was so fun to see her!!!

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Although Childhood Cancer Awareness month is over, the battle is far from finished for Megan.  Tomorrow morning she heads to Warrenville for her PET scan then immediately to CDH for her next chemo treatment.  Hopefully we will receive her PET results on Tuesday and have more good news to report.  In the meantime, Megan will continue her crusade to end this vicious and senseless disease so that no more kids will go through what she has experienced.  It’s past time these brave kids received our support. #morethan4 #kidsmatter

Until next week…

What a Week!

When you are fighting childhood cancer, there are times when you become so preoccupied with the battle that one week runs into the next.  Before you know it, another week has passed and you can barely remember what happened.  Then there are those weeks that are so full of emotions that they will forever be etched in your memory.  Such was this past week for Megan.

On Tuesday morning, Megan had an MRI of her brain and orbits.  Since she has such bad claustrophobia, she has to get her brain MRIs under anesthesia.  Here she is on Tuesday morning ready to go.

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The previous week, she had already received the amazing news that her chest and neck MRI had come back clear.  Obviously, there is so much anxiety for Megan and our family when it comes time for scans, and this time was no different.  We anxiously awaited the phone call from her doctors on Wednesday while Megan tried to keep her mind occupied with other things.  At about 12:30 p.m., we finally received the expected call from Megan’s oncologist.  As usual, I had to let the phone ring a few times before I found the courage to answer, but when I did, Dr. Kar had wonderful news.  He reported that Megan’s brain/orbits MRI came back with no tumors!!!  The only thing the MRI showed was the one spot at the base of her skull that has remained unchanged since she started her latest experimental treatment protocol.  Her doctors believe this spot could be a treated tumor that is dormant, but they are going to meet this week to determine if they want to treat it with gamma radiation.  Her medical team will also be meeting to decide how they want to proceed with Megan’s treatment.  Since this chemo cocktail is still experimental, there is no clinically determined length of the treatment.  Also, Megan has reacted abnormally to the treatment in that instead of just slowing down the active tumor growth, the treatment has actually caused her to show no sign of disease.  Since such a positive reaction to this treatment is not normal, her doctors need to decide if they will continue with more treatment or declare her in remission and start monitoring via periodic scans.  She is definitely going to receive her next 21 days of treatment, but after that, there is a chance she could be finished and her body could actually start to recover.  Leave it to Megan to break the norm!  Obviously, we all slept better on Wednesday night.

Even though Megan had her MRI under anesthesia on Tuesday morning, she still had big plans for that evening.  She and her sister Kenzi were planning to attend the Jonas Brothers concert in Milwaukee that night.  Since Madison is only about an hour and 15 minute drive to Milwaukee, it actually worked well for both of them.  I was a little worried about whether or not Megan would feel well enough after her scans to go, but I think being with her sister was just what she needed to help her through the day’s “scanxiety”.  They had so much fun together and they said the concert was amazing.

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Of course they had to stop for some sushi prior to the concert 🙂

After the good news we received on Wednesday, Megan had about 24 hours to relax because then it was off to Washington, D.C. for her second trip to “Curefest”.  Curefest is a childhood cancer advocacy weekend to raise awareness for this awful disease.  Megan went last year and found it to be a very powerful experience as she connected with peers from all over the country who are in the same fight as her.  This year, she was really looking forward to meeting up with her friends and rallying to the Capital Building to make her voice heard.  The message for the weekend is that our kids are worth way more than the current 4% of Federal funding for all cancer research that our kids receive.  To see the passion of these kids in action and to hear their powerful stories is a vivid reminder of how their government, pharmaceutical companies, and the medical community has failed them.  As I’ve said so many times before, Megan is being treated with virtually the same treatments I would have received if I had ARMS when I was her age…and I’m 52 years old!  Since 1980, only three new drugs to treat the initial diagnosis of childhood cancer have been developed.  To put that in perspective, in the last six years, 77 new drugs to treat adult cancer have been approved.  That’s a sad sign for our kids, and it should be an embarrassment to our country.  If our politicians could just hear the heartbreaking stories of these kids and their families, I don’t know how they could not realize and appreciate this sad and unfair situation.

The good news is that Megan and her friends have decided that enough is enough.  They have decided that if the adults who make the decisions and control the money cannot take care of them, then they will take care of themselves.  It’s why Megan has raised over $210,000 to support the childhood cancer research that could save her life and the lives of so many other kids.  It’s why so many of the kids at Curefest have lobbied their legislators, promoted legislation to support childhood cancer funding, and started their own not-for-profit organizations to support families who have been impacted by this devastating disease.  It’s a sad state of affairs when kids who are fighting for their lives are at the same time trying to find ways to fund the research that could save them.  How is that okay?  I still believe that at some point in our country’s future, we will look back in embarrassment at how we treated these kids for so many years.  However, this weekend always gives me hope, because I really do believe these kids cannot be stopped.  They will be the change we so desperately need.

Throughout the weekend, Megan stayed active in a variety of ways.  She led a group that marched to the capital building.  Throughout the march, Megan carried a bullhorn and led the group in various chants in support of childhood cancer.  She also served as one of the emcees of the main event on Sunday that culminated with a performance by Daughtry.  Most importantly, she connected with so many people as they shared their inspiring stories and their hopes for the future.  It was an exhausting…and very hot…weekend in D.C., but it was something that Megan would do all over again.  She will not rest until there are no more kids who are forced to experience what she has been through.  Rest assured…these kids are going to make sure cancer loses.  It’s a shame when the most mature, rational, and passionate people in our nation’s capitol are these kids…many of whom, like Megan, are fighting for their lives at the same time.  Here is Megan’s Curefest weekend in pictures.

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Getting ready to lead her group on their march towards the Capitol.
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Megan serving as one of the emcees for Sunday’s Curefest event.  In this picture, she has invited all of the kids in attendance who are childhood cancer survivors.

Here are some pictures with Megan and the many friends she met at Curefest.

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Emma & Ava Blaser have become two of Megan’s closest friends. Ava (on Megan’s left) is a cancer survivor.
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Megan also got to meet Daughtry prior to his amazing performance on Sunday.

Although the Curefest weekend was mostly business, we did manage a Saturday morning trip to the Smithsonian Zoo, which was amazing.

And of course, no trip to D.C. is complete without a visit to Georgetown Cupcakes 🙂

And after an exhausting weekend of advocating for childhood cancer, this is how you feel on the flight home.

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It really was an amazing week, but as usual, there is no time to rest because Megan has to be back at CDH on Monday morning for her chemotherapy treatment.  We are very anxious to hear what her medical team has decided is the best course of action after this next 21 days of treatment.  It would sure be nice if her body could take a break from these toxic chemotherapy treatments.  In the meantime, we will continue to be thankful for the great news we received on Megan’s most recent scans, and we will continue to be inspired by her passion and devotion to the cause of raising awareness and funding for childhood cancer.  She is the perfect example of someone being the change they want to see in the world.  Sooner our later, everyone will have to listen. #morethan4 #kidsmatter #gogold

Until next week…

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Breathe When You Can

When your child is fighting pediatric cancer, sometimes it seems like you can go for days without taking a breath.  At times, you get so caught up with the daily battle that the days can disappear virtually without notice.  I remember during Megan’s initial 54 weeks of treatment when it seemed like weeks would go by where the memories of the daily events were fuzzy at best.  Such has been the case during Megan’s relapse treatments as well.  Between weekly travels to the hospital for treatment, the agony of recovering from those chemo treatments, and the multitude of medical appointments in between, it’s easy to let each day go by with minimal recollection.  Sometimes I think the lack of memory is the result of our minds trying to help us all through this nightmare.  If you talk to Megan, she would tell you that she can barely remember anything about her first 54 weeks of treatment.  It all seems like a blur, which I guess could be a blessing in disguise.  However, as tempting as it may be to try and forget all of negatives that accompany childhood cancer, Megan and our family have tried to make it a habit to focus on the positives.  We have followed Megan’s lead in trying to live each day to the fullest; focus on the positives around us; and let go of the negatives.  We have learned that when fighting childhood cancer, you have to breathe when you have the opportunity.  This week, Megan and our family finally had a chance to catch our elusive breath.

On Tuesday, Megan received a CT scan of her chest and neck.  During this latest relapse, her primary tumor was on the left side of her neck.  She also had two tumors in her chest and another at the base of her skull.  This CT scan was to check the larger tumor in her neck and the two in her chest.  After her first six weeks of this treatment, she had an initial scan and it showed that the tumors were shrinking, so we were very hopeful it would be more of the same with this scan.  While we were at CDH on Tuesday, Megan also had an appointment with her psychiatrist and got her blood work checked at the clinic.  As usual, Megan powered through the day, but she was exhausted by the time her long day was over…and now she had to make it through the “scanxiety” that accompanies every scan.  I’ve mentioned it many time in the past, but I really have no idea how she makes it through the time between her scans and getting the results.  It’s bad enough for Deb, Kenzi and I, but for Megan, it has to be utter agony.  On Tuesday night, she tried to stay occupied, but by the time nightfall came, she really had trouble falling asleep as the anxiety started to get the best of her.  On Wednesday, I was anxiously awaiting a phone call from her oncologist, and the much anticipated call finally came at about 11:30 a.m.  When I see the CDH phone number come up on my cell phone, I always have to let it ring about three times before I get the courage to answer.  Dr. Kar was the oncologist who called and thankfully he said he had good news.  Remarkably, Megan’s CT of her chest and neck showed no evidence of disease!!!  Dr. Kar even sounded surprised that Megan was responding so well to this new chemotherapy protocol.  When I shared the news with Megan, you could see her entire body relax…even if it will only be for a little while.  I called Deb and Kenzi right away, and I think all of us slept a little better on Wednesday night.  We could finally catch our breath for a few moments.  Although Megan has a brain MRI this coming Tuesday morning, the good news she received about her CT scan gave her a bit of reprieve to enjoy the week…and she made the most of it.

September is Childhood Cancer Awareness month, and Megan has been very busy in her quest to raise awareness and funding for the disease.  A couple weeks ago, she found out that for the first time the Chicago Cubs were hosting a Childhood Cancer Awareness game at Wrigley Field.  Megan is a huge Cubs fan and an even bigger fan of her favorite player, Anthony Rizzo, because of all he has done to support childhood cancer.  She asked if we could go to the game, so we jumped online and got some tickets for the event.  The night before Friday’s game, I was contacted by the mother of a childhood cancer survivor who was helping to organize the event at Wrigley Field.  She was aware of the work Megan had been doing to raise awareness and funding for the disease, and she kindly asked if she could help make the event even more special for Megan.  She was organizing a group of childhood cancer survivors who would get to go in the Cubs dugout prior to the game and be on the field with Anthony Rizzo as he and another childhood cancer survivor threw out the first pitch.  I didn’t tell Megan about all of this because I wanted her to be surprised.  It turned out to be an amazing experience as Megan got her picture taken with Anthony Rizzo and Kyle Schwarber and was able to be on the field prior to the game for the first pitch and the National Anthem.  What made the day even better was that Megan’s good friend, Katelyn, came home from college to attend the game with her.  It was an amazing day to celebrate all of these courageous kids who are fighting this awful disease.  Thanks to the Chicago Cubs for helping to raise awareness and funding to support childhood cancer.

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Meeting Anthony Rizzo was the highlight of the day for Megan!
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Meeting Kyle Schwarber was exciting! Megan said he was one of the nicest people she has ever met.
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Megan and Katelyn
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Waiting to go on the field for the first pitch.
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On the field with the other brave childhood cancer survivors waiting for the ceremonial first pitch.
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On the field for the National Anthem.

The next morning, ESPN’s Sportscenter showed highlights of the Cubs game, which they won 17-8.  Incredibly, Anthony Rizzo hit a grand slam during the game, which was amazing!!!  During the Sportscenter highlights, they showed Rizzo greeting these kids and throwing out the first pitch before he hit is momentous grand slam.  Here are a couple pictures from the Sportscenter broadcast that show Megan with the other kids.  That grand slam was a magical moment!!!

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After Friday’s festivities at Wrigley Field, Megan was exhausted.  Although she had a good night’s sleep, she had to get up on Saturday morning to participate in another special event meant to raise awareness and funding for childhood cancer.  Before Megan’s latest relapse, she worked part-time at the “Hustle & Hunee Boutique” in Coal City.  Since Megan is now in treatment, she is unable to commit to work there, but the owner has remained extremely supportive of both Megan and her cause to raise awareness for childhood cancer.  On Saturday, the owner held a special event at her store called “Meganfest” where she held raffles and all sorts of other things to raise money for Megan’s fundraising efforts through Luries Children’s Hospital.  It was so nice of her to host this event and to help Megan raise funds to support childhood cancer research.

After the great news we received on Tuesday about Megan’s CT scan, it’s hard to believe that she will be right back at it on Tuesday with her brain MRI.  That’s why it’s so important to breathe when you have the opportunity, because in this journey, there’s always another battle right around the corner.

It’s Childhood Cancer Awareness month.  Let’s make sure all of these brave kids know that we’ve got their backs.  Maybe someday, they can all breathe easy without carrying the weight of this completely ridiculous and evil disease.  Until next week…

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Relentless

I had a couple of hours to think this morning as I ran the Naperville Trails Half Marathon.  One of the things I love about running is it gives me an hour or two where I can disconnect from everything and clear my mind.  I am currently training to run the Chicago Marathon on October 13 where I will be part of the Cal’s Angels marathon fundraising team.  My goal is to raise $5,000 and to date I have raised $3,523.  If you are interested in supporting my marathon fundraising efforts, you can do so here.  All of the proceeds raised will go towards supporting Cal’s Angels in their W.A.R. (Wishes; Awareness; Research) against childhood cancer.  I am looking forward to running the Chicago Marathon in Megan’s honor and in honor of all kids who are fighting, or have fought, childhood cancer.  Any chance to raise money and awareness for the cause is time well spent.  Anyway…Back to my morning run reflections.

As I was running in the rain this morning, I thought a lot about childhood cancer and the nearly five year battle Megan has been waging.  As I reflected back on so many moments, the one word that kept coming to my mind was “relentless”.  Childhood cancer is relentless!!!  The disease seeks out these unsuspecting, sweet, innocent kids and once it finds a victim, its grasp is so powerful.  Once childhood cancer enters these kids lives, it tries to dominate them both physically and mentally…and it’s relentless.  The omnipresent evil grasp of childhood cancer extends beyond its victim to the entire family as there is not a day that goes by that cancer is not on the minds of everyone in our family.  Every once in a while, cancer allows some hope as we have celebrated Megan being in remission three different times, but every single time, it rears its ugly head again and the process starts all over again.  Throughout the past five years, I have gotten to know so many kids and their families who have lived the relentless nature of childhood cancer.  After watching this nightmare for the past five years, I understand and can appreciate why some kids decide to wave the white flag.  The outdated and barbaric treatments we offer childhood cancer patients are so brutal that some decide in a very dignified and honorable manner that they have had enough.  That’s what cancer does.  It beats and beats on its victims until they just can’t take it anymore.  I really can’t imagine anything being more relentless than childhood cancer.  As I continued my half marathon run, I caught myself asking why and how do we continue to allow this to happen to our kids?  However, after a couple miles of wallowing in self pity (and running a little slower as a result), I began to think about the term “relentless” in a different way.

Cancer is definitely relentless, but during Megan’s battle, I have learned that she is every bit as relentless…if not more so.  Over the past five years, Megan has endured 95 weeks of chemotherapy and over 130 radiation treatments…as well as short and long term mental and physical side effects to numerous and brutal to mention.  I really don’t know how she does it, but with each passing relapse and each subsequent treatment protocol, her resolve gains strength.  During her initial 54 week treatment cycle, she was determined to win her own battle as she would never let any negativity around her.  After her first relapse, she started becoming involved in a fight that was bigger than herself.  She became aware of the unfair underfunding of childhood cancer research and she decided to start fighting not just for herself, but for EVERY kid past, present, and future who has or will be impacted by childhood cancer.  When she relapsed for the third time, she definitely decided that enough was enough…cancer had to be stopped.  With each adversity, she has gained more strength and determination.  She has become more relentless than ever…which is why Childhood Cancer Awareness month means so much to her.

During the month of September, Megan continues advocating to raise awareness and funding for childhood cancer.  Her partnership with Ivory Ella is going very well as the company says her collection is flying off the shelves.  If you are looking for some quality items that will help raise awareness and funding for childhood cancer, check out her collection on the Ivory Ella website.  10% of all sales will go towards Megan’s fundraising efforts to support important research on childhood cancer taking place at Luries Children’s Hospital in Chicago.  Ivory Ella just released a new blog highlighting Megan’s journey and her passion to end childhood cancer.  Megan has also been working with some local businesses on fundraisers as well as working her social media channels to help raise awareness for Childhood Cancer Awareness month.  In two weeks, Megan will be traveling to Washington, D.C. to participate as the emcee for the Curefest event, which is an advocacy weekend rally to raise awareness for childhood cancer.  How can all of us support Childhood Cancer Awareness month?  It doesn’t have to be a monetary donation…instead, it can be as simple as wearing something gold this month.  It can be changing your social media pages to display the childhood cancer gold cancer ribbon.  It can even be as easy as telling your neighbor that childhood cancer only receives 3.8% of Federal funding dedicated to cancer research.  Everything helps…and these kids are counting on us.

Yes…cancer is relentless, and it hit Megan hard this week.  During Megan’s current treatment plan, it is the week 2 treatment of each three week cycle that really hits her hard.  She had her chemo treatments on Tuesday and she did pretty well…as evidenced by the fact that she asked her mom to stop by the pet store so she could give the dogs some loving 🙂

Megan hung in there pretty well until Thursday night, which is when the flu-like symptoms always seem to hit.  On Friday, she was probably awake for only four hours the entire day as her body told her that it needed rest.  When Megan is feeling sick, she can always count on her Boo Boo Kitty to be right by her side.

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Although Saturday she was still feeling exhausted and her body hurt, she wanted to get herself together because she had a very special guest stopping by.  During Megan’s initial treatment, the very first fellow teenage cancer fighter Megan connected with via social media was Kasey Harvey from San Diego.  Kasey had Stage 2 ARMS and was diagnosed a couple months before Megan, so we connected with their family, and we have stayed friends ever since.  Kasey helped Megan through some tough times at the beginning and they have remained close.  It just so happened that Kasey was coming to Illinois for a college visit, and since they were flying into O’Hare, they asked if they could stop by for a visit.  Of course, we were all very excited.  Kasey and her dad got here at about 3:30 p.m. on Saturday and we had a great visit.  I know Megan wasn’t feeling well and was exhausted, because as soon as the Harveys left, she crawled on the couch and went right to sleep for the night.  We were so happy to see Kasey and her dad, and we are thrilled that Kasey remains cancer-free!!!  Here is a picture of the “survivor sisters”.

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Kenzi also started her classes this week at the University of Wisconsin-Madison.  We still can’t believe she is already a junior!  She is studying to be a speech pathologist, and she seems to love everything about her prospective profession.  She even works part-time for a private speech pathologist in Madison who works with disabled teens.  Kenzi absolutely loves the kids she works with, and has pretty much decided she would like to work with disabled teens as a career.  We are excited to see where the future takes her, but for now, she is loving Madison.  This weekend was exciting for her as the Badgers had their first home football game of the season #gobadgers

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This will be a very big week for Megan as it is time for her next set of scans.  She has a chest CT on Tuesday and then a brain MRI on September 17.  As always, we will all be holding our breath in anticipation of the results.  These scans are especially tough on Megan as I cannot even imagine the mental strain it puts on her.  However, she will still manage to flash that infectious smile to let us know she’s got this all under control.  It is true that childhood cancer is relentless, but Megan is relentless as well.  I still believe childhood cancer has met its match, because not only will Megan win her own battle, but she is going to help put a stop to this disease once and for all.

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It’s September…Show Your Gold

Today, the parents of 43 more kids heard the devastating news that no parent should ever experience.  These parents were told, “Your child has cancer.”  I will never forget when Deb and I first heard those words come out of the mouth of Megan’s doctor.  In an instant, your entire world is turned upside down and you have no idea where to turn or what your child is about to experience.  Unfortunately, that number of 43 new childhood cancer cases per day is increasing.  In a country as wealthy and advanced as ours, it’s hard to fathom that instead of the number of childhood cancer cases decreasing, it is on the rise.  It’s even harder to believe that in a country as advanced as ours, treatments for childhood cancer haven’t changed much since the 1970s.  In other words, had I contracted Alveolar Rhabdomyosarcoma (ARMS) at Megan’s age, my treatment would have been nearly identical to what she is receiving today…and I’m 52 years old!!!  Since 1980, only three new drugs have been approved in the first instance for use to treat children and teens with cancer.  That is why in 2019, childhood cancer is still the number one cause of death by disease in children under age 15.  Finding less toxic treatments and cures for childhood cancer are simply a matter of priorities.  If childhood cancer received the same attention and levels of funding as other diseases, we would have a cure by now…and we could have saved the tragic news that the parents of those 43 kids heard today.  Even more importantly, we could have saved the mental and physical torture that those 43 brave kids will have to endure as they courageously battle this dreaded and ridiculous disease.  We have to do better, and we can do better.  Curing childhood cancer just has to become a national priority…which is what the month of September is all about.

September is Childhood Cancer Awareness month.  It is a month to remember those brave kids who have fought, are fighting, or will have to fight the evil beast that is childhood cancer.  It is a month to spread the word that kids matter too.  Currently, the Federal Government dedicates only 4% of its total funding towards childhood cancer research.  The large pharmaceutical companies largely ignore childhood cancer because they don’t see it as a profitable venture.  Instead, these companies focus on developing cancer treatments for adult cancers and then they test those drugs on children to see if they happen to work.  There are very few fully funded research projects that are completely focused on finding less toxic and more effective treatments for childhood cancer.  Once again, these kids deserve better, and September is the time for all of us to show our support to these brave warriors.

How can you show your support?  There are so many things all of us can do to raise funding and more importantly, raise awareness for childhood cancer.  Everyone is encouraged to “Go Gold” for the month of September.  That can be as simple as wearing a gold childhood cancer pin, a gold ribbon in your hair, gold socks, gold shoelaces, or anything else gold you can think of.  Change your social media pages to one of the many childhood cancer awareness gifs that are out there.  Change the screen saver on your phone to a childhood cancer gif. You can donate to one of the many not-for-profit organizations that focuses specifically on childhood cancer.  If you are looking for a spot to donate where the money goes directly to fund childhood cancer research, Megan is currently raising money for two different research projects at Luries Children’s Hospital in Chicago.  You can find her fundraiser HERE. You can also gather art supplies, magazines, stuffed animals, blankets, books, hats, and gift cards to donate to a local hospital where childhood cancer patients are being treated.  When these kids go into the hospital for their treatments, there are times they are there for a week or more, and these gifts help make their stays a little more tolerable.  Everything helps, and it’s important to understand that it’s not always about the money.  Anything that is done to help raise awareness for childhood cancer is a benefit to these kids.  There is something all of us could do that will make a difference.  September is our month to show the more than 40,000 kids being treated for childhood cancer that we care.

Childhood Cancer Awareness month has become very important to Megan.  She has been busily contacting local businesses and organizations to ask if they would become involved in raising awareness and funding for childhood cancer.  One of her most exciting ventures is her ongoing partnership with Ivory Ella.  For the third year in a row, Megan is partnering with Ivory Ella on a Childhood Cancer Awareness collection.  The company recently moved their headquarters to New York City, and when the girls took their trip there last weekend, Megan was able to meet up with them and finalize her collection.

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Since the collection came together quickly and needed to be ready for September, Megan was under a time crunch to get everything done.  She worked with Ivory Ella on a blog post to help publicize the collection.  Then Ivory Ella wanted pictures turned around quickly so the collection could get on their website on time.  That left Tuesday for Megan to get her pictures taken by Mikayla at Capture the Canvas Photography, who is the photographer who also took Kenzi and Megan’s senior pictures, as well as the pictures Megan recently took for Childhood Cancer Awareness month.  Mikayla was able to fit her in on Tuesday afternoon and then get the pictures edited and sent to Ivory Ella by Wednesday morning.  I’m sure Mikayla was up most of the night getting the project completed, but as usual, the final product was stunning.  What’s even more amazing is that Megan had her nearly five hour chemotherapy treatment that day and went directly from chemotherapy to get her pictures taken.  You would never know it from her pictures, but she was absolutely exhausted before she ever started.  However, when you are as passionate about something as Megan is about childhood cancer awareness, you find a way to fight through the adversity.  10% of all sales from Megan’s collection through Ivory Ella will go towards her fundraising efforts for childhood cancer research being conducted at Luries Children’s Hospital in Chicago.  Megan is very proud of this year’s “More Than 4” collection, so stop by the website and check it out.  Not only will you be getting a great product, but you will also be supporting all of the kids fighting childhood cancer.

“I’m so excited for this years childhood cancer launch! It is our 3rd collection and I am ready to see everyone supporting our kids! Childhood cancer still receives only 4% of all federal funding for cancer research. This lead to me choosing the “more than 4” design for this year because kids deserve way more than 4%! Last year we raised an incredible amount of $15,000 for childhood cancer research. My goal is for everyone to know what “more than 4” means and to raise even more awareness with this shirt than the past years. Together we can end childhood cancer!”

Megan Bugg (2019)

Megan and her childhood cancer colleagues are no longer going to sit quietly and let childhood cancer get away with this.  They have decided that if the adults in charge cannot advocate for them, they will take matters into their own hands and advocate for themselves.  Let’s do what we can during Childhood Cancer Awareness month to show them that they matter.  Kids like Megan, Jacob, Ellie, Sophia, Mattis, Averie, Indy, Olivia, Emma and so many more are counting on us.  Please don’t let them down.

On a personal note, all of us know that cancer doesn’t discriminate, as it affects so many adults as well.  This week, our family was devastated to learn that our friend Linda Miller passed away after a long battle with cancer.  During Megan’s treatments, Linda was such a source of inspiration and comfort as she would post such wise words on her blog comments.  When Megan was in the hospital receiving her treatment, I would often read Linda’s comments to her and there would always be a resulting sense of calm come over both of us.  Linda’s husband was one of the finest men I ever worked with, and Megan was actually named after Ken and Linda’s daughter Megan.  May Linda rest in peace and may the entire Miller family find peace and comfort in knowing the incredible legacy she left behind.

Cancer has to be stopped!!!