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.

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 🙂

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 dance.  The 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…

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.

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!!!

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!!!

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.

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…

It Just Keeps Happening

Throughout Megan’s Journey, the connections she has made with other cancer fighting kids from all over the country and the world have been a vital part of her personal support system.  When she gets to actually meet one of these amazing kids in person, the connection is immediate and powerful.  The first time she met Kasey, Mia, Sophia and Ellie were moments I will never forget.  No matter how hard we try as family and friends, we can never truly understand what Megan and these kids are going through.  We can see the physical hardship, but the mental struggle is at a level we just can’t relate to.  Fortunately, these kids can support one another in a way that is nothing short of miraculous.  Although I am thankful that Megan has had all of these strong cancer fighting teens in her life, it still is so hard when Megan tells me she has connected with yet another kid who has found out he/she has cancer.  What’s even worse is when she learns that the cancer has been determined to be terminal.  Unfortunately, the Federal government has not done nearly enough to protect our kids as only 4% of funding for all cancer research is dedicated specifically towards childhood cancer.  Until that changes, nothing changes for our kids.  Until then, it just keeps happening.  This can’t continue, because precious kids like Lincoln deserve so much better.

After last week’s post, Megan received a heart-wrenching comment from an 11 year old named Ethan.  He shared that his 12 year old brother Lincoln had been battling stage 4 chondrosarcoma for four long years.  Ethan saw this blog site and decided he wanted to start his own blog site in honor of his brave brother Lincoln.  Following Ethan and Megan communicating with one another, I was able to connect with the boys’ father.  I was devastated to learn that Lincoln has been declared terminal.  His doctors only gave Lincoln until mid-September, but he is still fighting with everything he’s got.  His dad said he is determined to make it until his 13th birthday in early December.  Can you even imagine what this boy, his brother, and his parents are going through?  How can our country continue to accept this as okay?  Cancer has yet another helpless and innocent child in its vice grip and there is absolutely nothing that his parents can do about it.  It just keeps happening and it has to stop!!!  Please keep Lincoln, Ethan and his parents in your prayers as they continue to deal with the unthinkable.  I hate cancer more than anything!!!  Here is a picture that Lincoln and Ethan’s dad sent to me of his beloved boys.  I dare anyone to look at this picture and tell me we shouldn’t be doing more for our kids.

Deb and I know full well that we are so fortunate, because four years after her initial diagnosis that left us with little hope, Megan is still here and going strong.  Although she is still dealing with a mass in her chest that will be scanned again in five weeks, she is not about to let that uncertainty keep her down.  This week was very exciting for her as she had a very special visit from a very special guest.

I have posted on this site before about the special relationship Deb shares with one of her former students, Kay Cannon.  Kay graduated from Reed-Custer High School and has gone on to become one of the most sought after writers/directors in Hollywood.  She has written on 30 Rock, wrote the Netflix series GirlBoss, wrote all three Pitch Perfect movies, and recently wrote and directed the hit comedy, Blockers.  Her story is really incredible as she is a lesson in hard work, determination and strength.  Megan absolutely loves the entire entertainment industry scene, so when she had a chance to go visit Kay on a couple different occasions, they immediately hit it off.  Megan not only admires Kay’s professional accomplishments, but she also sees Kay as a strong female role model that she hopes to emulate.

This weekend, Kay came back to Reed-Custer High School because Deb and the principal at Reed-Custer High School had worked together to recognize her accomplishments at halftime of Friday’s night’s football game between RCHS and CCHS.  When Megan found out she was coming, she asked if Kay could come and speak to the Drama Club students at Coal City High School, and of course, Kay obliged.  Megan had the honor of introducing her and asking her questions.  Here are a couple pictures of the event, which our high school students loved!  It was such an honor to have her at our high school, and I can’t thank her enough for taking time out of her busy schedule to be with our students.

Kay also was able to hang out at our house after the football game with some of her family and friends, which was loads of fun.  When Kenzi heard that Kay was coming back, she even decided to drive home from Madison, WI to see her.  So not only did we get to see Kay, but Kenzi was home for a couple days as well.  What an awesome weekend!

While Kenzi was home, she didn’t waste any time getting her turn with Megan’s kitten Willow.  Kenzi is the one who got Willow for Megan as a present this past Christmas, which may be the single greatest Christmas gift in history.  That kitten is always there whenever Megan is having a rough time.  It’s uncanny how well they get along, but Kenzi was able to get a little Willow lovin’ this weekend as well 🙂

On Tuesday, the Reed-Custer High School volleyball team held their “Go Gold” night to raise money and awareness for childhood cancer.  It was a fantastic event, and one of the RCHS girls volleyball players was kind enough to choose Megan as her honoree for the night.  Here is a picture of Megan with Ashleigh Coster.

Thanks to the RCHS volleyball team for raising awareness for childhood cancer.  Also, Megan was so excited that the money they raised for the event will go towards her support of Dr. Walterhouse’s research at Luries Children’s Hospital in Chicago. Due to the lack of adequate Federal funding for childhood cancer, it’s up to kids like Megan to raise money to privately support the research that just might save her life and the lives of so many other kids.  There is something fundamentally wrong when kids with cancer and their families are forced to raise money to support research that might save the lives of their children.  In a country as wealthy and technologically advanced as ours, that’s just not right.  We have to do better!

Megan has another big week ahead, but I will fill you in on that next Sunday.  Until then, please keep Lincoln and his family in your thoughts and prayers.

 

Cancer and the Paradox of Time

When cancer enters your life, time becomes a such a strange and unpredictable variable.  While walking beside Megan on her nearly four year journey with Stage 4 Alveolar Rhabdomyosarcoma, our family has seen firsthand how time can change so dramatically depending on where Megan is on her journey.  There have been so many occasions where time virtually stands still, but yet other times when time goes by in the blink of an eye.  Cancer tends to make so many things in life relative, and time is no exception.

I will never forget when we first learned that Megan had Stage 4 cancer and would have to undergo 54 weeks of chemotherapy.  As her doctors explained what she was about to experience, I was speechless.  54 weeks was over a year of her young life!  I was floored.  I could not believe that we would be spending the next 54 weeks watching our beautiful 13 year old girl undergo the torture that is chemotherapy…and believe me, it was tortuous.  When we first learned that she would have to undergo this extensive chemotherapy protocol, her doctors gave us a five day reprieve before she got started.  Those five days were the fastest five days of my life.  It seemed like we had yet to take a breath and Megan was already back at the hospital receiving her first of many chemotherapy treatments.  That’s when I first realized that time was definitely going to play tricks on us during this journey.

When Megan would undergo her brutal five day hospital days for chemotherapy treatments, there were so many times that I swear the clock didn’t move.  Megan would be throwing up and in agonizing pain, and all I could do was hold her hand and watch the clock crawl until the time would finally arrive when she could receive her next medication to help her reach a somewhat peaceful sleep.  After those five day treatments, Megan would be so excited to come home where she would get a week or two off before her next treatment.  However, as expected, those weeks at home went by far too quickly only to find ourselves back at the hospital for yet another round of barbaric chemotherapy.

Even after Megan completed her first 54 week protocol, time continued to mess with our minds.  She would get scans every three months, but those three months went by so fast and all of the sudden, it was time for another round of scans.  After her scans, we would wait a day or two for the results, and once again, time would screech to a halt.  If you have never experienced “scanxiety”, I hope you never do.  It is the absolute worst, and for a cancer survivor, there is no worse fear that waiting for those scan results to come back.  Time definitely stands still during those trying times.

Now that Megan has been through her first 54 weeks of treatment, and another 36 weeks of relapse chemotherapy treatment, she has become much better than me at handling the paradox of time.  Following her last scan, which showed that she still has a mass in her chest very near her aorta, she is now in the midst of enjoying a two month reprieve from the hospital.  However, the time is already flying by.  When you are fighting cancer, time seems to never be on your side.  I can’t believe that it’s already been two weeks since her last scan, and in six short weeks she will back under the CT machine once again.  I know that time will be cruel over the next six weeks as it will go by so quickly.  However, Megan has become pretty adept at learning to live in the moment as she will not let the fear of cancer take over her life.  It’s not easy, and I really don’t know how she does it, but she continues to remain focused on her future and living each day to the fullest.  Kids with cancer are so resilient, and Megan is no exception.  All of these kids are heroes in my eyes.

Megan continues to keep herself very busy each week as on Mondays and sometimes Tuesdays, she travels to Joliet Junior College for a program that is allowing her to catch up on the high school credits she missed when she was ill.  Cancer has not allowed Megan to be in school for anything close to full time since December of her 8th grade year.  As a result, she has fallen far behind her peers in academic credits.  Megan has always had a goal to graduate with her class, and thanks to this program at JJC, if she continues to work hard, her goal is within reach.  In addition to her JJC classes and the classes she is still taking at Coal City High School, Megan is also keeping herself busy working two different jobs.  On Tuesdays and Wednesdays she works at the Broadway Dance Studio, which she loves.  Then on Fridays and Sundays she is working at Nelly’s restaurant in Wilmington, which is where Kenzi worked this summer.  It is so good for her to stay busy, because it is when her mind is idle that the dark thoughts can appear.  As I have reiterated over and over, the physical battle that comes with cancer most definitely pales in comparison to the mental battle.  The mental aspect of being a cancer survivor is something Megan will have to deal with for the rest of her life, which seems so unfair.

On Saturday, Megan attended the Morris High School Homecoming Dance with her good friend Grace.  Aunt Tammi was the babysitter for both Megan and Grace when they were young, so they essentially grew up together.  Since they both attend different high schools, they don’t see each other as often anymore, but they have still remained good friends.  Megan was very excited when Grace asked if Megan would go to the Homecoming Dance for her high school.  Here are a couple pictures of the event.

Although Childhood Cancer Awareness Month has ended, Megan is as committed as ever in her crusade to end this vicious disease.  She still has her fundraising site open to support Dr. Walterhouse’s important research on Rhabdo and Ewings being conducted at Luries Children’s Hospital in Chicago.  She also spends much of her down time connecting with kids from all over the world who are fighting this disease so she can lend her support to them.  It seems like everyday she is communicating with yet another child who has just found out they are in for the fight of their lives.  It is so unfair, and even though Megan is trying to do her part, she can’t do it alone.  As I begged last week, even though Childhood Cancer Awareness Month is over, we can never let the color gold fade away.  There are far too many kids counting on us.

Speaking of time, I got to enjoy a couple hours of quality time with Kenzi on Thursday night.  It’s already starting to get pretty cold up in Madison…especially on the morning walks to class.  Since last Thursday was the only night I didn’t have a nighttime commitment, I made the three hour drive north after work to bring Kenzi her winter clothes and take her to supper.  Although the visit was far too short for my liking, we still had such a good time.  She absolutely loves everything about UW and it is so good to see her so happy and content.  Here is a picture we took right outside of the restaurant with the capital building in the background.

Let’s hope time is kind to Megan and all of the other brave kids who are fighting the nightmare that is childhood cancer.  Until next week…

Don’t Let the Gold Fade Away

September has been Childhood Cancer Awareness month.  Over the past four years, Megan and our family have become painfully aware of the toll childhood cancer plays on children.  Maybe I am just too close to it, but this year, September felt a little different than it has in the past.  It seems like a few more people are listening to the powerful and riveting voices of these young cancer fighters as they not only advocate for their own lives, but to also honor those brave kids who have lost their battles to the vice grip that is pediatric cancer.  Most importantly, they are also raising their voices to protect future kids from having to go through the nightmare they have experienced.  They are not only advocating for themselves, but for your kids as well, because as our family learned the hard way, you never know when cancer is going to strike.

As I have watched kids like Megan make their voices heard, I have witnessed more and more people listening intently to the message.  More and more school districts are holding childhood cancer awareness nights.  More and more private organizations are starting to choose childhood cancer as their philanthropy project.  More and more people are supporting our kids by going gold during September.  Most importantly, more and more lawmakers are finally listening to the determined voices of kids like Megan, which caused them to finally pass the STAR Act, which focuses more attention and resources towards childhood cancer research.  Kids like Megan and her teenage cancer-fighting friends are making a difference.  Now it’s up to all of us to make sure the gold flame isn’t extinguished just because September is over.  Our children are counting on you!

As Megan has spent the month advocating for childhood cancer, she has also been navigating her own cancer battle.  For the past five months, Megan’s medical team has been monitoring a suspicious mass in her chest that keeps showing up on her CT and PET scans.  In previous PET scans, the mass did light up, which is consistent with cancer, but until a biopsy can be completed, her doctors cannot be certain as to the diagnosis.  Normally, her doctors would order a biopsy to determine if the mass is cancerous, and if it was, they would either surgically remove it or start a proton radiation regiment.  Since Megan has already relapsed twice, chemotherapy is not really a viable option for her, because if her cancer has returned, the cancerous cells have proven to be immune to all of the chemotherapy drugs available to treat pediatric cancer.  Remember, due to a lack of funding to support viable childhood cancer research, Megan has been treated with basically the same chemotherapy drugs that I would have been treated with when I was a kid.  It’s so sad that we have not made more progress over the past 30 years.

The complicating issue with Megan’s suspicious mass is that it is located so close to her aorta that the surgeons all say it is far to dangerous to try and get a biopsy.  Last Monday, Megan had another CT scan to monitor the growth of this mass in her chest.  I really don’t know how she keeps it together in the days leading up to these scans.  I have spoken to this in previous posts, but it is so true that the physical pain of cancer pales in comparison to the constant mental battle.  So many kids who survive cancer suffer from PTSD, severe anxiety and many other mental health issues.  This is why so many childhood cancer survivors need the assistance of mental health professionals just to make it through remission…let alone when they have an active tumor.  Just think about it…think about what it must be like at 17 years old to know you have a scan coming that could very well determine your mortality.  When that kind of momentous event is on your mind, everything else in life takes a back seat.  “Scanxiety” is very real to all cancer patients, but with kids…it can take over their lives.

The days leading up to Monday’s scan were very tough on Megan, but that is nothing compared to waiting for the results.  Megan went to school on Tuesday morning, but I know her mind was everywhere but the classroom.  I finally got a communication from her medical team at 10:30 a.m. and they said that the scan showed the mass in her chest was still growing slowly.  They also said that they would probably need to order a PET scan and start radiation treatments.  I told Megan the results, and in her typical never-give-in attitude, she said, “Well…It could have been a lot worse.”  That afternoon we met with her medical team, but by the time we had gotten there, they had changed their recommended course of action.  After consulting with others on her case, they decided that since the mass was growing so slowly, they would continue to monitor it by scanning her again in two months.  Although Megan was nervous about still having the mass in her chest, she was relieved that she would at least have two more months before she has to go back for another scan and possible treatment.  When you are fighting cancer, every single good day is a blessing never to be taken for granted.  As Megan always says, compared to many of her friends, she is very lucky!  There’s a life lesson in there for all of us.

During Childhood Cancer Awareness Month, there continue to be so many schools who have honored Megan and her cause.  On Tuesday, Megan was invited to Wilmington High School for their “Volley for the Cure” event where they honor those who have fought cancer.  They held a special fundraising event for childhood cancer where all of the proceeds will go towards Megan’s support of Dr. Walterhouse’s research at Luries Children’s Hospital.  It was so nice of the Lady Wildcats to honor Megan and her cause.  Here is a picture of Megan being honored.

On Thursday, the Reed-Custer High School soccer team held a childhood cancer awareness event.  Prior to and during the game, they held numerous fundraising events to raise money to support Megan’s childhood cancer research fundraiser.  Prior to the game, they held a recognition ceremony and asked Megan to speak.  As always, she did an awesome job.  Megan was so touched by everyone at RCHS for their support.  Here are a couple pictures from the event.

Between Megan’s medical appointments and all of her childhood cancer advocacy events, September has been a very busy month for our family.  On Saturday, we decided it was finally time to spend the day having some fun.  Megan heard about Tanner’s Apple Orchard, which is located near Peoria, IL, so we decided to make the drive down for a day of family fun.  It just so happened that Kenzi was planning to visit her boyfriend Nick at Eureka College on Saturday, so everything worked out perfectly for us to meet up for lunch.  Megan and I had not seen Kenzi in a month, so we were really looking forward to catching up with her.  It was so great to see her and spend a little quality time together as a family.  Although we miss Kenzi terribly, we could not be more proud of her.  She has really settled in at the University of Wisconsin-Madison and she loves everything the dynamic campus has to offer.

After lunch, Megan, Deb and I headed to Tanner’s Apple Orchard where we had a blast.  Here are a few pictures of our outing.

It’s true that Childhood Cancer Awareness month is at an end, but these kids are still counting on us.  They are counting on us to support them as they raise their passionate voices loud and clear to anyone who will listen.  Childhood cancer has to end!!!  We cannot continue to allow childhood cancer to be the number two killer of children ages 0-14 (after only accidental death).  We cannot continue to lose two kids per day in our country to childhood cancer.  We cannot continue to allow childhood cancer to be the number one killer of kids by disease.  And we sure cannot allow our kids to be treated with 30 year old toxic chemotherapy drugs.  We have to do better…our kids are counting on us!!!  As September ends, please don’t let the gold fade away.