Stepping Back Into Battle…Again

We are quickly closing in on the four year anniversary of Megan’s battle with Stage 4 Alveolar Rhabdomyosarcoma.  It was Christmas Day, 2014 when we discovered the tumor on Megan’s arm, and five days later she was officially diagnosed.  The moment Dr. Hayani informed Megan that she had an aggressive form of childhood cancer that had spread throughout her body is etched in my mind forever.  He explained what type of cancer it was and that she would be undergoing 54 weeks of intense chemotherapy along with radiation treatments.  Of course, Deb and I had tears in our eyes as we watched him break the devastating news to our beautiful then 13-year-old 8th grader.  As soon as Dr. Hayani left the room, Megan looked at both of us and sternly said, “Please don’t say ‘I’m sorry”, because that makes me think I’m not going to win, and I’m going to win.”  From that moment forward, Megan’s determination never failed her.  Don’t get me wrong…she went through some very tough times where I’m sure she wondered if she could go on, but she always powered through even the darkest of moments.  When she completed her 54 weeks of treatment and was officially declared to be in remission, I remember her saying, “It might sound strange to say, but I always knew I was going to win.”  And win she did!!!  We celebrated like never before, because our little girl was about to take the life back that cancer so rudely tried to steal from her.  However, here’s the heartbreaking thing about cancer…it doesn’t give up easily.  Cancer’s grip is mighty, and even the bravest of souls must continue to stay vigilant and determined to take it down once and for all.

Since Megan was initially declared in remission in January, 2016, she has now relapsed three times.  The first was a tumor they found in her left breast, which was surgically removed.  Following that surgery, Megan went through another 36 weeks of chemotherapy and another six weeks of proton radiation.  Following her 36 week chemotherapy protocol, a CT scan showed a tumor in her back, which was treated with yet another round of proton radiation.  Then about five months ago, her three month scan showed a small growth in her chest very near her aorta.  Because if it’s location, her doctors chose to monitor it via frequent scans because surgery or a biopsy would be very risky.  An accidental puncture to her aorta could have lethal consequences.  Fortunately, the first couple scans showed that the tumor was barely growing at all.  In fact, her last PET scan of two months ago actually showed less cancerous activity in the tumor than the first PET scan revealed, which was a very promising sign.  Last Monday, Megan went in for another CT scan, and we were hoping for the best.  Dr. Hayani called on Tuesday afternoon to break the difficult news that the tumor had more than doubled in size over the past two months.  The tumor was now about 8 centimeters in length and three centimeters wide.  To complicate matters worse, the tumor was also working it’s way completely around her aorta, which if left unchecked could cause dire consequences to the blood flow from her heart.  On Thursday morning, we went to the CDH clinic to meet with Megan’s medical team to determine a plan of action.

By the way, while we were at the clinic on Thursday, Megan got to see Dr. Salvi.  We are devastated that Dr. Salvi is retiring at the end of this year.  He is an incredible doctor and has become such an important part of Megan’s life.  We are so happy for him, but we will miss him dearly.

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After consulting with the surgeons, her medical team believes it is still far too risky to try and get a biopsy to verify that the tumor is indeed cancerous.  Given Megan’s history, all indications are that it is probably a relapse of her ARMS, but without a biopsy, they cannot be certain.  Instead, they have decided that the best course of action is to use proton radiation on the tumor.  Her doctors believe she will go through about six weeks of daily radiation treatments, and then they will scan her again to see if the radiation has been successful.  Once she has completed this radiation protocol, she will have endured well over 100 radiation treatments on various parts of her body.

Although we were obviously upset with this news, we were not completely surprised as her doctors had warned us previously that more radiation was a likely outcome of her present tumor.  Also, there is some very good news in that the CT scan of her chest and abdomen did not present signs of any further cancerous activity.  Most relapses of ARMS usually take place in the lungs or brain, which is very difficult to treat.  Although we wish Megan did not have any relapses, she is very fortunate that none of her relapses have taken place in any major organs.  That is definitely a blessing!  Also, Megan’s relapse tumors have always responded to proton radiation, so we have no reason to believe this current tumor won’t respond similarly.  It might sound crazy to hear this from a parent, but I am thrilled that Megan is only dealing with one tumor.  Remember…everything is relative when fighting cancer.  If you don’t continue to search for the silver lining, you will drive yourself crazy.

Megan has another busy and stressful week ahead.  Since statistics show that an ARMS relapse usually presents itself in the lungs or the brain, Megan’s doctors ordered a brain MRI just to be sure.  The CT showed that other than the current tumor, her torso is clear, but she has not had a brain MRI in some time.  The brain MRIs are very tough on Megan because she is so claustrophobic.  As a result, she has to be under anesthesia to get the scan completed, which makes for a long and stressful day.  On Tuesday, Megan will be heading to CDH for her brain MRI under anesthesia, and we hope to have results the next day.  Then on Thursday, she has to get a PET scan to check the rest of her body.  Her doctors also want to check the PET to see how much cancerous activity there is in her current tumor.  The PET will take place in Warrenville, which is only about 10 minutes from her hospital.  We are really hoping that the PET results come in on Friday, because there is nothing worse for Megan than going through a weekend with “scanxiety”.  Needless to say, it’s going to be a very long week.

Once all of her test results come in, we will meet with the radiology doctor at the proton center to begin the process of planning her treatment.  Proton radiation is such an exact science that it takes time to get everything set up for her treatment.  Megan is really not happy that she has to wait to start her proton radiation, but there is a very good chance that it won’t be ready to start until after Christmas.  Like usual, she is ready to step into the ring as soon as possible to resume the fight and get it over with,  so her doctors tried to assure her that the extra couple of weeks will not make a difference in the success of her treatments.  The wait is just the reality of proton radiation technology.

Although all of us do our best to reassure her, none of us can ever really understand what she is going through every hour of every day.  Considering the fact that she knows she has a cancerous tumor growing in her body, she is doing remarkably well.  She will still go to her CCHS class tomorrow morning and then go to her night classes at JJC that evening.  I’m sure she will still go to work at the dance studio on Wednesday and Thursday nights.  I’m also sure that in the quiet times, there will be moments when she is scared, because who wouldn’t be.  She’s definitely entitled to her feelings without judgment.  However, over the past four years, cancer has caused a change in Megan.  Prior to this journey, she was a painfully timid 13 year old who struggled to make eye contact when she spoke to you.  After staring cancer down for the past four years, she has grown into a strong and determined young woman who has become her own best advocate.  It’s true that cancer is back, but it’s also true that Megan is stronger than ever before.  I’m definitely not a betting man, but if I were, I know where I would be putting my money.

It’s time for Megan to put the gloves on and step back into the ring for yet another round.  This time, let’s hope she lands the final knock-out blow.

“It’s hard to beat someone who never gives up!”

Babe Ruth

Until next week…

So Much To Be Thankful For

Over the past four years, we have traveled Megan’s Journey with her as she has fought with everything she’s got against this evil disease.  Although this has been the most trying time of our lives, Megan’s Journey has taught our family some very important lessons about life.  We have learned the importance of savoring each and every beautiful moment that life presents to us.  We have learned to live in the moment without lamenting the past or fearing the future.  We have learned that the good in the world far outweighs the bad.  We have learned that if you really want something, you have to be willing to fight for it.  We have learned that when life deals you a bad hand, you can still win if you just stay in the game.  Most importantly, we have learned to treasure the time we get to spend together as a family, and that was readily apparent as we celebrated a fantastic Thanksgiving holiday weekend.

The week got off to a great start as Kenzi made it home from college on Tuesday night.  When she walked in the door, we had the dinner she requested on the table.  It was so enjoyable for all of us to be able to sit around the table at supper and catch up with one another.  Kenzi has been working so hard at school this semester, so she was definitely ready for a home cooked meal, some time with family, and of course…it didn’t take her long to catch up with Willow.  Willow is the kitten Kenzi gave to Megan last Christmas, which if you ask Megan, she will quickly tell you that Willow is the best Christmas gift she has ever received!!!  I can’t tell you how many times Megan’s anxiety has started to become overwhelming, but then that kitten jumps up on her lap and suddenly the fear disappears.  Mom and Dad were not so sure another kitten in the house was a good idea, but sisters know best!!!

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Of course, Kenzi had to catch up with Sparky too 🙂

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Right after supper on Tuesday, Megan had to head to the high school for a rehearsal.  She works at the Broadway Dance Studio in town and every year, they put on a Christmas show to raise funds for needy families in our community.  The benefit show is essentially an original musical performance featuring the dancers from the studio.  Since Megan works at the dance studio, she was asked to play a small part in the production.  Megan has had a great time hanging out with the dancers and performers as they rehearsed for the show.  The actual performances were on Saturday night and Sunday afternoon.  We were able to attend the Saturday night show, which was lots of fun.  Many of the CCHS theater alumni were in the show, which was exciting for Kenzi because she performed with many of them when she was in high school.  Megan did an awesome job on her part of the show!!!

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Megan with her good friend, Sophia, who is one of the senior company dancers.
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The girls with Wyatt and Josh who both starred in the show. Kenzi performed with both of them in past CCHS theater productions.
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The girls with Joey, who was a classmate of Kenzi’s at CCHS.
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Megan with Kilen and Cambree, who are the granddaughters of Aunt Tammi.
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Megan with her buddy Sydney.

On Wednesday, the girls helped us prepare food to take to Grandpa and Grandma Bugg’s farm for Thanksgiving day.  We were also excited to pick up my sister Amy and her friend Ed from the airport in Chicago.  They flew in from Omaha and then drove down to the farm with us.  It was so good to spend time with Aunt Amy.  On Wednesday evening, Kenzi had her basketball friends, Maddie, Cali and Kenady stop over and they spent the night cracking us all up as they reminisced with some incredibly funny high school stories.

On Thanksgiving day, we made the three hour journey to Grandpa and Grandma Bugg’s farm where we celebrated with an awesome lunch.  It was so good to see so many of our family members there.  I was so busy working in the kitchen and then chatting after we ate that I did a terrible job of taking pictures, but here are a few from our Thanksgiving day on the farm.

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Kenzi and Gina working on the appetizer.

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On Friday, we hosted Deb’s Uncle Jim, his son Aaron and his grandson Mike for a traditional Greek dinner of Greek salad, avgolemono soup, and spanakopita.  With Deb’s family being of Greek descent, I have had to become adept at cooking the authentic food her family enjoys.  Of course, once again I was terrible about taking pictures, so you will have to trust me that we had a great time.  Aaron even got my snowblower running for me, so I definitely owe him one!!!  Later that afternoon, Grandpa Coope and Grandma Judy stopped over for a quick visit because they wanted to see Kenzi before she left.  We enjoyed an awesome pecan pie cheesecake that Megan made.  It was so good!!!

After a relaxing day on Saturday, Kenzi had to leave earlier than she had planned on Sunday to beat the pending bad weather.  After lunch, she headed back to the University of Wisconsin to finish off the final three and half weeks of her semester.  She comes home again on December 20 for the Christmas holiday and we can’t wait to have our family back together again!

Last week, Megan traveled over to Dwight Elementary School to pick up some toys from a toy drive their school held.  They graciously donated all of the toys they collected to the pediatric patients at Central DuPage Hospital, which is where Megan goes for treatment.  there is nothing worse than being in the hospital over Christmas, so I know that these toys will really brighten the day for some of these brave warriors.  Megan is so excited to drop off the toys this week at the hospital.  Here is a picture of Megan with the kind people at Dwight Elementary School.

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Although our Thanksgiving holiday was amazing, it is quickly back to the grind this week.  On Monday morning, Megan goes back to CDH for the follow-up CT scan on her chest.  Her doctors have been monitoring a suspicious mass in her chest which is precariously located near her aorta.  She has had a couple different scans, and although the mass continues to present itself, it is located in a spot where the doctors cannot get a biopsy.  Luckily, the mass has been growing very slowly, and without a biopsy, it is impossible to know for sure whether or not it is a recurrence of her ARMS.  Following her scan tomorrow morning, we will be on pins and needles waiting for the results to come back…but that is the life of a cancer survivor.  We will need everyone on Team Megan to send positive thoughts at 11:30 a.m. on Monday as Megan goes in for her scan.  She is such a strong young lady, but these scans can fill even the bravest of souls with fear.  We will continue to think positive and believe that Megan’s determination and will to win will keep the beast at bay.

I hope all of you had a tremendous Thanksgiving holiday with family and friends.  Here’s to a holiday season filled with love, joy and happiness!!!  Until next week…

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Yet Another Milestone

It’s hard to believe, but Megan is quickly closing in on the four year mark of her ongoing battle with stage 4 Alveolar Rhabdomyosarcoma.  During her journey, the challenges have been plentiful and painful, but there have also been many joyful milestones worthy of celebration.  Obviously, just the fact that Megan has defied all of the odds and is still here with us is by far the most important achievement of her journey.  When Megan was first diagnosed on December 30, 2014, the chances of her winning were so slim that we tried to put it out of our minds and focus on the here and now.  We are so blessed that the combination of her incredibly positive attitude along with her superb medical team have allowed her to reach this point in her recovery.  However, there have also been so many smaller milestones achieved that we have celebrated along the way.  For example, when Megan completed her first 54 weeks of chemotherapy; or when she was able to go back to school; or when she had her first clean scan; and so many more.  This past week, Megan quietly cleared another hurdle, but because she continues to defy the odds, it passed without much fanfare…yet it is still worthy of celebration.

On Tuesday, Megan came to my office to eat lunch, and while she was there she told me that it was the one year anniversary of her last chemo treatment.  As she uttered those words, I had to sit back and reflect for a moment, because it really didn’t seem possible that it had been that long.  Megan’s last chemotherapy protocol was a 36 week treatment schedule to treat the relapse tumor that was surgically removed from her left breast.  Since that final treatment, she has had radiation to treat a tumor in her lower back, and her doctors are still monitoring a suspicious mass in her chest right next to her aorta.  Given that she has still been actively fighting throughout the past year, it just didn’t seem possible that her final chemo treatment was a full year ago.  However, Megan knew the date well, and when you have been through what she has endured, there are certain things that are embedded into your memory.  The last four years have simultaneously gone by so slow and yet so fast.  It’s definitely been a long, strange and trying journey.

Since Megan completed her final chemo treatment a year ago, she has grown and matured into a totally different person.  Cancer transformed her from a shy and timid teenager into a tenacious young adult with a steely focus on not only winning her own personal battle, but also on defeating childhood cancer for all kids.  As readers of this blog know, Megan has been working very hard to raise awareness and funding for childhood cancer so that no more kids have to go through the terror she has experienced over the past four years.  This week, she took another step forward in her personal crusade as she made another donation to support the important research being conducted by Dr. Walterhouse at Luries Children’s Hospital in Chicago.

When Megan decided to start raising money to support childhood cancer research, she did a lot of research of her own.  What she learned was that to maximize her investment, she needed to find a pediatric cancer research project that she could directly support.  Although there are many terrific non-profit organizations that support childhood cancer research, Megan didn’t want any of the money she raised being siphoned off to pay administrative and other costs associated with many of these well-intentioned organizations.  That’s when she discovered the promising research being conducted by Dr. Walterhouse.  He is studying why ARMS and Ewings sarcoma cancer cells become immune to chemotherapy treatments.  Recently, his work has gained the interest of the National Institute of Health, which is a huge step in the right direction.  To support his research, Megan worked with Olivia through the Luries Foundation to set up her own “Circle of Friends” fundraising page.  Thanks to the generosity and support of so many people and organizations, Megan has raised over $136,000 to support Dr. Walterhouse’s research!!!  She was so excited to personally present her check to him at Luries in Chicago this week.  Dr. Walterhouse is always so personable and appreciative with Megan, so this is always a highlight for her.  Although she was so excited, she is far from finished as she has set a goal to raise $200,000 to fund this important research project that could be a huge breakthrough in finding less toxic and effective pediatric cancer treatments.

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As I have said many times, it is so sad that kids with childhood cancer and their families across the country are forced to raise money to fund the research that could save their lives.  Unfortunately, this is the reality due to the Federal government only dedicating 4% of their total funding for cancer research towards developing less toxic and more effective treatments for childhood cancer.  On the positive side, over the past four years, I have seen a steady, incremental change in awareness for pediatric cancer.  It seems that more and more people are paying attention, and that is because of passionate voices like Megan and many of her fellow cancer fighting friends who are refusing to take no for an answer.  I truly believe that a cure is on the horizon, and when that joyous day happens when no more kids have to go through the evils of cancer, it will be because of brave, courageous and determined kids like Megan and her friends.  That day is coming, and it cannot come too soon.

We are so excited for the Thanksgiving holiday!  Kenzi is coming home from college on Tuesday night, which means our entire family will be together over the holiday weekend.  Speaking of Kenzi, she continues to thrive at college as she pursues a career as a speech pathologist.  She has been working two nights a week at Panera Bread in Madison, which has worked out very well for her.  Recently, she learned that a private Speech Pathologist had advertised for a part-time Speech Pathology Aide.  Kenzi immediately applied and she had her interview last Thursday.  She was so excited when she was offered the job on the spot!  She will begin her new job second semester, and not only is she thrilled to be working in her future field, but she will also be working with disabled students, which is something that she really seems to enjoy.  It’s amazing to watch her future career start to take shape.  We are so proud of her!!!

We are definitely going to enjoy the Thanksgiving holiday, because on Monday, November 26, Megan goes back to CDH for another CT scan to check on the status of the suspicious mass in her chest that her doctors have been monitoring.  However, we won’t worry about that until the time comes, because there are far too many beautiful moments to be made this Thanksgiving holiday.  When cancer enters your life, you learn to live in the moment, and that’s just what we plan on doing this week.

We hope everyone has a very happy Thanksgiving, because no matter what is going on in your life, there is always something to be thankful for.  Until next week…

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The Little Things Seem So Much Bigger

As Megan and our family close in on four years of her battle with Stage 4 Alveolar Rhabdomyosarcoma, there seem to be more and more milestones she is reaching.  On December 30, 2014, we learned for sure that Megan had Stage 4 ARMS, and at that point, we had no idea what the future held.  Her doctors told us that her case was extremely advanced and ranked as one of the worst cases they had ever seen.  She had tumors all over her body including in her bone marrow, and the disease was intensifying by the day.  Of course her doctors tried to remain as positive as they could, but they also pulled no punches with us.  I had also started reading everything I could online about ARMS and the statistics were sobering to say the least.  At that point in our lives, thinking past tomorrow was almost too much to bare.  However, thanks to Megan’s incredible determination to win, her amazing medical team, and the support of family, friends, and everyone on “Team Megan”, she continues to defy all of the odds.  Not only is she still fighting, but she is starting to reach some of those milestones that we thought we might never get the chance to experience with her.

Those traditional rights of passage for teenagers that many parents might take for granted have become momentous occasions for us.  Going to her first Homecoming Dance; attending her senior Prom; and watching her former volleyball teammates include her in their senior night recognition were all so special to us.  I realize those moments are special to every parent, but for us, they held a little extra meaning because we never knew if Megan would get to experience those events that many others might take for granted.  When you have watched the look on your child’s face when her doctor told her she had stage 4 cancer.  When you have stood by helplessly as your child went through 54 weeks of chemotherapy hell.  When you have stood in the intensive care unit watching as your child is hooked up to more tubes than you can count and not knowing if she would make it to tomorrow.  When you have gone through such trials and tribulations; it makes the little things seem so much bigger.  This past week, Megan got her senior pictures taken, and it might sound a little sappy, but when I first saw the pictures I was overtaken with emotion.  I wasn’t emotional just because I think she looked gorgeous (and I fully admit I am more than a little biased!).  My emotion was based on the fact that she had once again defied all of the odds and reached another milestone that can never be taken away from us.  We have Megan’s senior pictures!!!

I realize that her album was already posted on her Team Megan Facebook page, so I won’t force you to see them all over again, but I will share a few of my absolute favorites.  I think so many of her pictures perfectly captured both her huge heart as well as her steely determination.  In some of these pictures, her message of “I got this” comes across so clearly.

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It is when we get to experience moments like Megan’s senior pictures that I am reminded of how lucky our family really is.  By having a daughter fighting cancer, our family is part of an exclusive club that no one wants to join.  As a result, we have connected with families from all over the world who share our unfortunate common bond.  My heart continues to break when I learn of yet another family who will not get to see their child go to Prom or experience the joy of seeing their child’s senior pictures.  Cancer is so cruel, and the fact that our country still cannot find a less toxic and more effective treatment option for pediatric cancer continues to boggle my mind.  My heart goes out to a family I have been in contact with for a few months now.  Their precious daughter had started college when she was diagnosed with the same cancer as Megan.  Tragically, she did not respond to treatment and passed away earlier this week.  Although I didn’t know Aimee personally, I communicated with her mother often via text, and even through these text messages, I could feel the despair she was experiencing as she searched for answers and help for her daughter. Please keep Aimee’s family in your thoughts and prayers as we have lost another beautiful soul far too soon.  Cancer is so evil!!!

Our children are this country’s most precious resource, and we are failing them miserably when it comes to finding less toxic and more effective treatments for childhood cancer.  Unfortunately, there are kids like Megan all across the country who have decided to take matters into their own hands by raising money to support the very research that could save their lives.  In a country as advanced and wealthy as ours, how is that okay?  How is it acceptable that kids with cancer are raising money to fund research for their own treatments?  The answer is that it’s not okay.  As I have said many times, when our country sets its mind to something, we accomplish it.  It’s simply a matter of priorities, and what could possibly take precedence over the health and well being of our children?

Megan is still actively working to raise money to support Dr. Walterhouse’s important research being conducted at Luries Children’s Hospital in Chicago.  She is very excited because later this week she is traveling to Luries for another check presentation to Dr. Walterhouse.  To date, thanks to the generosity of so many amazing people, Megan has raised over $126,000 to support this research!!!  However, she is not done yet.  She is continuing to search out willing partners to assist her in her efforts, and anyone can still make an online tax deductible donation by going to her personal Circle of Friends page.  She will continue on her crusade to end childhood cancer, because she is the first to say that this isn’t about her.  Instead, it’s about every single kid who has fought, is fighting, or will fight this devastating and ridiculous disease.

As the holidays near, I am looking forward to all of those little beautiful moments that accompany the special days ahead.  I hope you are able to realize the value in all of those precious little moments, because if life ever throws you an unexpected curveball, you will realize how special those moments actually are.  Until next week…

Turn Back Time

The time change had me a little thrown off schedule this morning.  I was up at 4:30 a.m. and couldn’t go back to sleep.  Once I got my bearings, I realized that we were supposed to set the clocks back last night.  As I walked around the house in those early morning hours finding all of our clocks and setting them back an hour, it made me think about Megan’s Journey and the metaphor of “turning back time”.

Over the past four years, there have been so many times that I have longed for the days before Megan was diagnosed with cancer.  The days of watching her play volleyball, hang out with her friends, go to school on a consistent basis, and plan for her future.  Instead, cancer has made the last four years more of a challenge for our family than I ever could have imagined.  We have watched Megan go through 90 weeks of torture with her chemotherapy treatments.  We watched helplessly as we nearly lost her in March, 2015 from complications with an infection.  We have made more trips to Central DuPage Hospital and the proton radiation center in Warrenville than I could ever count.  We have struggled to keep our family together between the demands of Megan’s treatments, responsibilities at our jobs, and trying to keep Kenzi’s life as normal as possible.  It’s been so hard, and I would never wish what we have experienced on any family…EVER!!!  It is tempting to look back on all of that misery and wonder “Why us?”, and I would never fault anyone whose family has experienced cancer for harboring such feelings.  Although you might think that our family would like to turn back time, I can honestly look back and say that although the last four years have been the most challenging of our lives, they have also been by far the most rewarding.

During her journey, Megan has blossomed from an extremely shy 13 year old who could barely look you in the eye into a 17 year old with a steely determination and grit that I never knew she possessed.  Where before she would cower from a stranger, now she is giving speeches about childhood cancer awareness in front of hundreds of people on the lawn of the United States Capitol!!!  Fighting cancer has brought out the very best in her, and I know that once she finally kicks cancer to the curb for good, she will come out of this a much stronger person than she would have been otherwise.  After all…once you have beaten the ultimate opponent in cancer, what other challenge can compare?

I also reflect on all of the incredibly kind and caring people we have met along Megan’s four year journey.  The support Megan has received from her community and everyone on Team Megan has been so humbling, unexpected, and refreshing.  I have stated many times throughout this blog that Megan’s Journey has gone a long ways towards restoring my faith in humanity.  I know for a fact there are far more kind people in this world than there are of the alternative.  We have also met the most incredible medical professionals who have touched our lives in ways I could have never imagined.  Megan’s medical team is filled with caring professionals who have become heroes to Megan and our family.  These people have become a part of our family and we love them dearly.  Megan is hear today because of a series of fortunate events that connected us with the very best medical professionals in the field.  It started on the day after Christmas, 2014 when we took Megan to her pediatrician, Dr. Spomenka Jercinovic, to check a bump on her left forearm.  Dr. Jercinovic wouldn’t even let me go home and pack some things before taking Megan to the hospital.  She said to go immediately and she would set it up for us to see Dr. Salvi at Central DuPage Hospital.  At that point, Megan’s cancer was so advanced that I shudder to think what would have happened if she would have sent us home and told us to bring Megan back in a week.  At the hospital, Megan was under the care of Dr. Salvi and Dr. Hayani who are the absolute best!!!  Or Nurse Kathy who in March, 2015 realized that something wasn’t right with Megan and recognized that she was suffering from sepsis and got her into critical care within minutes. Kathy has become like a second mom to Megan.  She is so special!  Or Nurse Jennie who became like a sister to Megan.  Or Mariel, who was Megan’s first nurse when she received her first chemotherapy treatment on December 30, 2014.  We were all so scared and Mariel was so loving and kind.  Or the hospital social worker, Beth, who helped Megan through so many anxious times during her first bout with remission.  Or the child life specialist, Allie, who Megan calls one of her best friends, who never fails to make Megan smile.  I could go on and on about the people who have enriched Megan’s life throughout her battle, but then thius post would go on forever 🙂 Without Megan’s illness, we never would have had all of these special people in our lives, so for that, we are all enriched beyond words.

During Megan’s Journey, our family has been challenged beyond belief.  It has been said, and it is so true, that when a member of the family has cancer, the entire family is fighting cancer.  I would by lying if I didn’t admit that there were times that we didn’t know if we could make it until tomorrow, but by leaning on each other, we always seemed to see the sun rise the next day.  Megan really gave us all the motivation we needed because we all figured that if she was fighting so hard with such a positive attitude, then we had to follow her lead.  Extended family and friends are priceless during a battle such as this, and we have been so fortunate to have the best of both, but in the end, it’s your immediate family that gets you through this grind.  It’s your immediate family that you have to lean on when you don’t think you can go on.  Fighting cancer has provided us the blessing of getting even closer as a family, and that was on full display this weekend.

Megan’s immune system is still compromised from her multitude of chemotherapy treatments, so she tends to always get any sickness that is going around school.  As a result, she has been fighting a bad cold for about a week.  She was really distressed because she and Kenzi and been planning on Megan coming up to the University of Wisconsin football game with her this weekend.  On Thursday morning it wasn’t looking good because Megan was miserable, and even on Friday afternoon she was still a little under the weather.  However, she and Kenzi were both begging for her to come visit, so we gave in allowing the sisters to have a couple days together.  Kenzi and her good friend Ellyn met Megan and I in Rockford where I dropped her of for the sisters weekend.  The girls went to the UW basketball game on Friday night and then the football game on Saturday morning.  In between, they went to Starbucks, ate, hung out in Kenzi’s apartment, and generally just had a great time together.  Since I had to go up towards the Wisconsin border for a Coal City High School football playoff game on Saturday (We won!!!), I headed on up to Madison after that to pick up Megan and bring her home.  It was so good to see Kenzi for even a short visit, and both girls said they had a great time.  There is nothing like a sisters weekend to help get rid of a sickness 🙂

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On Monday morning, Megan heads back up to CDH for a series of tests.  She has been having some GI issues and her doctors are trying to figure out how to address the problem.  It’s just another of those ongoing effects of the toxic chemotherapy treatments that pediatric cancer patients have to endure.  I long for the day when our Federal government provides the medical community with the resources they need to find less toxic and more effective treatments for our kids.  Hopefully Megan can get some answers soon to address the discomfort she has on almost a daily basis.

When you are faced with challenges in your life, it’s always easy to think back to the good times that you had prior to encountering those obstacles.  However, we have found that looking back and longing for the past really does you no good.  Instead, we have learned to embrace the positives, live in the moment, and look positively towards the future.  Megan and our family have been blessed in so many ways.  It’s true that I turned back the clocks this morning, but I would never ever turn back time.  There’s just too much to be thankful for.

“Life is not about waiting for the storm to pass…It’s about learning to dance in the rain.”

The Everyday Battle

For the first time in many weeks, Megan did not have to go to any medical appointments and she had no major childhood cancer-related events to attend.  For any other teenager, this would have resulted in a relatively normal week of going to school, going to work, doing homework, and hanging out.  However, what I have come to realize is that for Megan there is no such thing as a normal week, because the evil grip of cancer always maintains its hold on her in some way, shape or form.  Even when there are no medical appointments, the omnipresence of cancer is there, and although others may be unable to see the impact, those closest to her know the toll the disease continues to take on her physical and mental well-being.  Megan continues to fight back with everything she’s got, which makes me even more angry and bitter to know how cancer essentially stole her teenage years from her and yet still continues to try and negatively impact her life.  What’s even more heartbreaking is to know that Megan’s situation is not unique.

I’ve heard it said that you never stop being a cancer survivor, but I can’t help but believe it’s a little different for adults.  If I were to fall victim to cancer, I’ve already had 51 years without cancer to live my life free of cancer’s evil grasp.  By contrast, the average age for the onset of pediatric cancer is at the tender age of 6.  Those kids who are lucky enough to beat the disease have to live the rest of their lives with the weight of being a cancer survivor.  Of course it’s a badge of honor to have beaten the disease, but for the rest of their lives, they are still forced to deal with the physical damage that toxic and outdated chemotherapy treatments will have on their body.  Even worse, they will have to carry the tiresome mental burden of being a childhood cancer survivor.  They will be subjected to scans and the resulting “scanxiety” for the rest of their lives.  Every single bump or pain will bring with it the terror that the beast may have returned.  Unless you have been there, it’s a mental battle that none of us could ever understand.  As a result, “normal” becomes a relative term for a cancer survivor, because their normal is definitely not what the rest of us would consider normal.  The fact is that most of us would struggle to handle for one day what these brave kids must endure for the rest of their lives.  Am I angry about it…yes!  Am I bitter about it…yes!  However, I am also so proud of Megan and all of these kids because their bravery, courage and determination serves as such an inspiration to everyone they touch.  We could all learn some important life lessons from these kids.

Speaking of brave kids, Megan continues to connect with these cancer fighting warriors from all over the country.  This past September, when she was at Curefest in Washington, D.C., Megan was so excited to meet so many more childhood cancer fighters from all corners of our country.  It just so happened that one of the kids she connected with lives in Wheaton, which is only minutes from Megan’s hospital.  Ava is only 11 years old and she was originally diagnosed with cancer when she was only 3 years old.  She had actually surpassed the magic five year landmark without a relapse, which is when statistics show the odds of a full recovery become much better.  Unfortunately, she recently relapsed and had to go through another chemotherapy regiment.  Ava and her sister Emma are avid dancers, and they actually performed a very moving dance duet on the Curefest stage.  Their dance was seen by representatives of The Ellen Show which resulted in them making a recent appearance on her show to perform their danceThe dance is a moving rendition which reflects Ava breaking free from the grip of cancer with the loving support of her sister, Emma.  After Curefest weekend, Megan continued to stay in touch with both girls, and on Saturday night, Megan spent the night at their house.  As I have said many times, these cancer fighting kids have such a connection with one another because they share a unique experience that none of us can really comprehend.  Megan was thrilled to see the girls this weekend, and we are so happy to report that Ava has completed her treatments and is doing great!!!

Megan has about four weeks until she has her next scan to check on the status of the suspicious growth that has shown up in her chest.  Prior to that, she also has some follow-up medical appointments to address some ongoing physical issues that resulted from her 90 weeks of intense chemotherapy.  She has struggled with digestive issues for quite some time and it finally got to the point that it was impacting her day to day functioning.  Her doctors ordered her to see a GI doctor and she has been working through various tests to determine exactly what the issue is and if it can be corrected.  One of the chemo drugs she was on, Vincristine, is pretty nasty stuff that results in nerve damage to the body.  This is the drug that caused the nerve damage in her feet that resulted in drop foot from which she is still recovering.  The drug can also cause nerve damage to her internal organs, which is what the doctors believe is causing her ongoing digestive issues.  Hopefully they can come up with a cause and solution because there are times that her issues are so acute that she is virtually incapacitated.  Although Megan is no longer under chemotherapy treatments, the impact of her past treatments remain a constant variable in her life.  It’s just one more reason why we need more funding for childhood cancer research so new and innovative treatments can be developed that are less toxic on the young and still developing bodies of these brave kids.

As I have said many times in my writings, fighting cancer is like riding the biggest baddest roller coaster you have ever experienced.  The highs are exhilarating; the lows are terrifying; and there is seldom a moment to catch your breath.  As a parent, there are times I get very frustrated being forced to watch the daily physical and mental battles Megan has endured and continues to experience.  However, I also know full well that my family is truly blessed, because Megan is still here fighting with us.  It’s hard to complain about your situation when you know so many families who have had their child tragically ripped from them due to the ridiculous disease known as childhood cancer.  I could never fully understand their pain, but I would give anything to assure that no family ever has to experience it again.  That’s just what Megan is fighting for.  She is no longer fighting just for herself, but for every single kid who has fought, is fighting, or will fight this vicious disease.

Cancer forces you to put life back into perspective.  It teaches us the value of family and friends.  It teaches us that every single day is a gift to be treasured.  Most importantly, it teaches us that the value of human life must take precedence over everything else.  These cancer fighting kids understand that better than anyone.  Right now, it sure seems like our country could learn a valuable lesson in priorities from these kids.  Until next week…

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For All Of Them

As Megan continues her fight and recovery from Stage 4 Alveolar Rhabdomyosarcoma, her determination to win has only grown stronger.  Her will to win is not only for her personal battle, but for all of the brave kids who have fought, are fighting, or will have to fight this dreaded disease.  Over her nearly four year battle, it has been incredible to watch how her focus has morphed from a personal battle to one where she is fighting for all kids with cancer.  That focus was never more apparent than it was this week when Megan turned a personal award into an impassioned plea for every single kid who has encountered the evil that is childhood cancer.

For the past six years, the Morris Daily Herald has sponsored a recognition called the “Women of Distinction” award.  It is meant to recognize women in Grundy County for both achievement and inspiration to others.  A few weeks ago, Megan was shocked to receive a call that she had been chosen as one of the three award winners for 2018.  She also found out that she would be recognized at a banquet this past Wednesday where she would receive her award and give an acceptance speech.  This was a unique year for the award as the three recipients were the youngest group to ever be recognized, with Megan being the youngest ever.  Here is a link to the article on all three very deserving honorees.  The banquet was wonderful as Megan was thrilled that Grandpa and Grandma Bugg, Aunt Tammie, Kim Scerine, and her good friend Katelyn were able to join her as guests at our table.  After the keynote address, Megan was presented with her award.  During her acceptance speech, Megan spent a short time telling her story, but her message to everyone in attendance was an impassioned plea to raise awareness for childhood cancer.  I thought the final two sentences of her acceptance speech really said it all about where Megan’s passion is focused right now.

“Though I am honored to receive this award, the real heroes are all of those kids past and present who fight for their lives each and every day as they battle childhood cancer.  I would return this award in a second if I could take their pain away.”

Here are a few pictures from Wednesday’s “Women of Distinction” award ceremony.

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Earlier in the week, Megan had the pleasure of going to Reed-Custer High School with her mom to formally accept the check that the Lady Comet volleyball team had raised with their “Go Gold” event.  Megan was floored when she found out that their event had raised $3,500 to support Dr. Walterhouse’s research efforts at Luries Children’s Hospital!  Thank you so much to the coaches and players from the RCHS Lady Comets!!!

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On Saturday, I had planned on traveling to Madison, WI to see Kenzi and attend the UW vs. University of Illinois football game.  It also happened to be the Homecoming game for the Badgers.  Since I am an alum of the U of I, Kenzi and I have made it a tradition to attend the football game when our universities play each other.  Although it is always so much fun to see her, I think she also enjoys the fact that UW has an awesome football program and they usually put a beat down on my poor Illini 🙂 I was planning on bringing a friend with me, but he turned out to have a conflict.  As soon as Kenzi found out that I had an extra ticket, she immediately asked Grandpa Bugg if he could come.  Well…if you know Grandpa Bugg, he never misses an opportunity to see his granddaughters, so after already making one three hour drive to Megan’s award banquet on Wednesday, he hopped in the car again on Saturday at 4:30 a.m. for a two hour drive to meet up with me for the trip to Madison.  Kenzi was so excited that he was coming with me, but the weather sure didn’t cooperate.  There was a chance of rain and some high winds, but we sure didn’t expect a blizzard to start in the middle of the first quarter!!!

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At one point, as the wind was blowing the snow into our faced so hard that we couldn’t see, we just started laughing :). Luckily, the snow ended by halftime, but by that time, Wisconsin had already run away with the game, so we headed out with Kenzi to warm up and have a late lunch at one of her favorite campus restaurants, Nitty Gritty.  Although we had about a 45 minute wait for a table, none of us minded because it gave us a chance to catch up with one another.  Here is a picture of Kenzi and Grandpa Bugg as we waited for our table.

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After our late lunch, Grandpa and I needed to hit the road because I didn’t want him getting back home too late.  I wish our visit could have been longer, but it was so good to see Kenzi even for a short visit.  She is such a strong and determined young lady and we could not be more proud of her.

Megan continues to keep herself busy between her school and work.  She attends CCHS part-time as she also goes to a special program at Joliet Junior College to try and catch up on the credits she missed during her cancer treatments.  Due to cancer, she has not attended a full year of school since her 7th grade year.  However, if she continues to work hard at JJC, she could still reach her goal of graduating with her class in May of this year.  Once she sets her mind to something, I have learned to never sell her short.

Megan has about four more weeks before she has to go back to CDH for yet another scan to check the status of the mass that keeps showing up in her chest.  However, until that time, we will continue to follow Megan’s lead by living in the moment and not taking a single day for granted.  One thing cancer teaches you is that every day is a gift to be treasured, so you can’t let one pass by without making some beautiful moments.  Until next week…

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