It’s “Scanxiety” Week

Megan completed her 36 week (90th week overall) chemotherapy protocol four weeks ago.  Since that time, it has been so refreshing to see her slowly but surely gaining back her strength and stamina.  For the first time in what seems like forever, she is no longer fighting daily stomach issues, headaches, or the many other ailments that accompany chemotherapy treatments.  She was able to go to school everyday last week.  She has had enough energy to put her make-up on and dress nicely everyday, which always makes her feel better about herself.  Her hair is starting to fill back in, and even though I think she absolutely rocks the short haircut, she has always been self-conscious of how thin her hair was during chemo.  She has been riding an exercise bike every morning, and has taken the dog for a walk most every afternoon.  It’s amazing how quickly we can notice a difference once she doesn’t have that nasty chemo dripping into her body every single Monday.  Megan is in a very good place right now both physically and mentally.  She has stared down cancer for the second time and is so ready to recover the life that cancer keeps trying to steal away from her.  We are so hopeful that she is able to keep this evil disease at bay so she never has to experience chemo again.  She is ready to turn the page and move on with her life.  This week, we will find out if that will be possible.

Think for a moment about going to a doctors appointment where you will find out that either you can continue living your normal life, or you will be in a fight for your life. Imagine the anxiety of knowing that at this appointment, you will literally receive news that could mean life or death.  Now imagine you are 16 years old and going through that experience.  That is exactly what Megan will be doing on Monday and Tuesday of this week.  Now that she has completed her chemotherapy treatments, it is time for her to receive her final scans to determine if the chemotherapy did its job.  On Monday, she has to be in Warrenville at 9:00 a.m. where she will receive a PET scan, and then at noon, she will be at CDH for a CT scan.  On Tuesday morning, she will be back at CDH for an hour and 45 minute MRI, which she has to do under anesthesia due to her issues with claustrophobia.  We may get results back on Wednesday, but we may have to wait until Thursday morning before receiving any news.  Obviously, it’s excruciating for Deb and I as we await the results, but imagine how Megan must feel.  However, tonight you would never know it.  She has continued to stay positive and flash that infectious smile to let us all know she has this under control.  As I have said many times, Megan may have cancer, but cancer has never had her.

Although Megan’s week was more like that of a “normal” teenager, she still had plenty of excitement.  As readers of this blog know, Megan’s passion has become raising awareness for childhood cancer and the lack of funding for research to find a cure for this dreaded disease.  She is appalled (as should everyone be), that only 4% of Federal funding for cancer research is dedicated to finding a cure for childhood cancer.  However, instead of just complaining about it, Megan has decided to take matters into her own hands and do something about it.  By partnering with various organizations such as Coal City High School, Coal City Middle School, the Lady Coaler Volleyball Team, Ivory Ella and others, Megan has donated nearly $50,000 to support childhood cancer research!!!  And…she’s not done yet.

Last week, Megan was contacted by the owners of Oleanders, which is a cute little clothing boutique in Morris, IL.  Megan is a big fan of “Love Your Melon” hats, because not only does she think their hats are awesome, but they also give half of their profits from each sale to support childhood cancer.  Love Your Melon apparel has become very popular and if you look at their website, they are often sold out of many styles.  It’s also very difficult to find anyone who gets approved to sell their merchandise at a retail store.  Luckily, the owners at Oleanders were approved as retail sellers, so they have the hats in their stores.  They contacted Megan last week because they wanted to partner with her in setting a goal of selling enough hats to raise $2,000 for childhood cancer research.  Megan was so excited to work with them to achieve this goal!  On Monday evening, we went to Oleanders to meet the amazing owners, Megan and Kara.  Megan immediately fell in love with all of the clothes in the store.  Megan (one of the owners) got her all decked out in their clothing and then our Megan posed for some pictures that Oleanders was going to use to help promote their sales goal.  Yesterday, Megan learned that they are almost halfway to their goal after only a week!!!  If you are in the area, be sure to stop by the store to pick up a hat and then check out their other great merchandise.  Megan says it’s her new favorite clothing store 🙂

File Dec 03, 5 55 19 PM

When Megan was going through her 90 weeks of chemotherapy treatments, one of her outlets was always music and the theater.  Last Spring, she was able to perform in the Coal City High School musical production of “The Little Mermaid”, and throughout her treatments, she always loved going to musical productions in Chicago.  During her three year battle, Megan and our family wanted to find a way to give something back to the community that had showed her so much love and support.  She decided the best way to do that was to start a community concert series to be held in the state-of-the-art Coal City Performing Arts Center located in Coal City High School.  Thus, the “Megan Bugg Concert Series” was born.  On Friday night, the fourth concert in the series was held as we hosted an amazing holiday performance by the nationally known acapella group, Street Corner Symphony.  Their opening act was by a gifted and entertaining singer songwriter, Gabe Dixon, which was immediately followed by the fun and talent of Street Corner Symphony.  It was really a fun evening to share with our community.  Thanks to Street Corner Symphony for continuing to be some of the nicest guys you will ever meet in show business!!!  Here is a picture of Megan with Gabe Dixon and then with the Street Corner Symphony crew.

File Dec 03, 5 08 50 PMFile Dec 03, 5 08 30 PM

Megan also took advantage of Friday night’s concert to conduct another event for childhood cancer patients.  She and her friends put together a childhood cancer “Giving Tree” where people could purchase gift cards that Megan plans to give as Christmas presents to the kids at her hospital that are fighting childhood cancer over the holidays.  Thanks to the generosity of many people, Megan’s “Giving Tree” was an amazing success.  Also, a huge thanks to Megan’s good friend, Katelyn, for assisting her with the “Giving Tree” on Friday night.  Finally, the “Megan Bugg Concert Series” would not be possible without the incredible hard work of Jack Micetich and Ann Gill who work countless hours behind the scenes to make these events happen.  Thanks Jack and Ann!!!

File Dec 03, 5 11 01 PM
Megan, Katelyn, Jack Micetich and Ann Gill right before the start of the event.
File Dec 03, 5 10 24 PM
Megan and Katelyn by the “Giving Tree”.
File Dec 03, 5 09 09 PM
Megan and Katelyn working hard at the “Giving Tree” table after the show. She is going to make a lot of kids very happy come Christmas this year!!!

It’s going to be a tough week as we await Megan’s scan results, but we are all feeling confident that good results are coming.  She is showing no signs that her cancer has returned as her energy level is good and she has not been running any fever.  However, until we get those results later this week, the “scanxiety” will be very real.  Starting at 9:00 a.m. Monday morning, we need everyone on “Team Megan” to send positive thoughts as Megan prepares to kick cancer to the curb once and for all.  It’s time to end this chapter of her life, because she deserves to turn the page to a bigger and brighter future.  Cancer messed with the wrong girl this time!!!

File Nov 30, 5 40 18 PM

So Much to Be Thankful For

When you have a child fighting cancer, you learn to appreciate many of the things you may have taken for granted in the past.  Holidays have always been a fun time for our family, but at times they would come and go without much thought or appreciation as to their significance.  I am embarrassed to say that there have even been times in the past where I almost dreaded some holidays due to the hustle and bustle that accompanied the event.  At times, I didn’t feel like entertaining, traveling, decorating, cooking and all of the other sundry tasks that came with the more celebrated holidays like Thanksgiving.  Traveling this journey for the past three years with Megan and our family has provided a new perspective on many things…including the holidays.  Now I absolutely treasure each and every opportunity our family has to be together and celebrate the holidays.  I make sure and enjoy spending quality time with family on these special occasions.  I don’t dread bringing the Christmas tree and boxes of decorations up from the attic.  Instead, I enjoy the chance to be with my family as we unpack boxes and reminisce over old pictures, ornaments and decorations.  Such family time has become some of the most beautiful of the beautiful moments.  They are a golden opportunity to live in the moment and be thankful for another day spent with my family.  Megan’s attitude and approach to her journey has given me a new perspective and appreciation for many of life’s opportunities that I used to take for granted.  Over this Thanksgiving weekend, I found myself reflecting on how fortunate our family really is.  At the beginning of the Thanksgiving holiday, I think Megan put it best in a post she wrote on Facebook where she said,

This thanksgiving remember to be thankful for family, friends, and your health. Things could always be worse so realize how fortunate you are. I am forever thankful for my life.

Our week got off to a great start as Kenzi came home from college late Monday evening.  It was so good to see her, and such a good feeling to have our family complete over the entire Thanksgiving week.  It was also a nice break for her as she needed a few days to regroup before heading back on Sunday afternoon to get ready for two tests this week, a final paper, and then preparations for semester exams.  It’s so hard to believe that she is almost finished with her first semester at the University of Wisconsin.  She is so proud to be a Badger, but it’s always nice to be able to come back to the comforts of home.

On Thursday, we left early in the morning to head to Grandpa and Grandma Bugg’s farm for our Thanksgiving dinner.  We stopped in Bloomington to meet Cousin Danny so Kenzi could keep him company on the drive down to Assumption.  It was so nice to have all of my brothers and sister there to catch up on things.  Also, all of the cousins were there as well.  Here is a picture of all of the cousins…plus a couple extra kids who were there as well.  Be sure to look in the bottom left hand corner of the picture for Deb’s photo bomb.  She always has a knack for keeping everyone laughing 🙂

File Nov 25, 8 31 47 PM

The girls also wanted to get their picture with Grandpa Bugg.  I think Grandma was taking her after Thanksgiving dinner nap when this picture was taken 🙂

File Nov 25, 8 28 55 PM

We left the farm at about 5:00 p.m. to head back to Coal City because Deb had Black Friday shopping plans.  She bribed the rest of us into going by promising us breakfast at The Crispy Waffle in Shorewood.  Although we didn’t get a very early start, we still had a fun time together…and of course Deb found quite a few deals for the upcoming Christmas holiday.

On Saturday, we went to Deb’s Cousin Sally’s for another Thanksgiving dinner with her side of the family.  It was once again so much fun to catch up with everyone.  Since Deb’s mom passed away earlier this year, I think this Thanksgiving was a little extra special for everyone.  Sally is a professional chef, so needless to say, the food was amazing…but the company was even better.  Thanks so much to Sally and Aunt Joanne for having us.

File Nov 25, 8 25 16 PM

However, I’m not sure whether the girls had more fun with the people or the dogs 🙂  Vinnie and Sweet Pea were the stars of the show.

File Nov 25, 8 25 49 PM
Kenzi’s boyfriend Nick along with the girls and the two dogs. Kenzi is holding Sweet Pea and Megan is holding Vinnie.

Kenzi wanted to make sure she was with us to decorate the house for Christmas, so on Sunday morning we hauled everything up to decorate before I had to drive her back to school.  Deb has done a great job of having an annual family picture ornament that is added to our tree each year.  It was so much fun decorating the tree and looking at how our family has changed throughout the years.  It’s hard to believe that our two girls are so grown up.  Here is a picture of Kenzi and Megan decorating the tree.

File Nov 26, 8 52 40 PM

As Megan said, we have so much to be thankful for this holiday season as things could have turned out so much worse for us.  Megan has been through so much over the past three years, including 90 weeks of chemotherapy; over 100 radiation treatments; two surgeries; and too many physical ailments to list in this post.  Her positive attitude, determination, infectious smile, and the incredible support of everyone on “Team Megan” has been her best defense against this ridiculous disease called childhood cancer.  As we celebrate this holiday season, we know how fortunate we are because Megan has been one of the lucky ones.  She has stared down stage 4 Alveolar Rhabdomyosarcoma and beat all of the odds that were so heavily stacked against her.  Not only has she beaten the disease once, but now she has beaten it twice.  I am so fortunate because I still get to kiss my daughter good night every evening and give her a hug every morning.  Unfortunately, childhood cancer is not so forgiving to everyone.

In previous posts, I have asked for your thoughts and prayers for little Isaiah who was an innocent and beautiful nine year old boy from England.  His mom connected with me when her son was diagnosed with cancer and she was looking for answers and support.  Over the past month, Isaiah’s mom and I became about as close as friends can be given the limitations of communicating overseas via electronic means.  When Isaiah underwent a 14 hour surgery to remove a cancerous tumor wrapped around his spinal cord, I felt like I was in the waiting room with his mother.  There seems to be a special bond between the parents of children with cancer, and I think it’s because we have all been forced to be members of an exclusive club that no one wants to join.  I was heartbroken to learn that Isaiah’s mom was also forced to join our club.  After Isaiah’s surgery, I had such hope that he would recover because he was such a positive little boy.  However, the evil reach of cancer quickly took hold of Isaiah as scans showed his cancer was spreading rapidly.  Tragically, Isaiah passed away earlier this week in the arms of his mother.  He was only 9 years old.  When I hear of yet another child succumbing to the evilness that is cancer, I am so sad…but I am also extremely angry.  Sooner or later, we have to do something about this disease that causes us to lose so many of our kids.  I know Isaiah is worth more than 4%.  I know Mia is worth more than 4%.  I know every single kid who has died from this preventable disease is worth more than 4%.  When will our Federal government realize that our kids are worth more than 4%?  How many more kids will it take before the wealthiest, most technologically advanced, and the most powerful country in the world wakes up and says enough!!!  It breaks my heart that it didn’t come soon enough for Isaiah.  As his mother said in an email to me, now Isaiah is yet another guardian angel looking out for Megan.  He is yet another reason that Megan will continue to fight with everything she’s got not only for her life, but for the lives of every single kid fighting this evil disease.  Rest in peace Isaiah.

Perspective in life is so important, and unfortunately, sometimes it takes a life changing event for us to realize that.  Megan’s journey has changed my perspective on so many things.  I am so much better at living in the moment.  I have learned to search for the beautiful moments that are present in each and every day.  I have learned to no longer wait for the storm to pass, but rather I’ve learned to dance in the rain.  Don’t get me wrong…I still have my moments when anger overtakes me, or I feel sorry for myself, but I’m much better about it than I was prior to Megan’s Journey.  It is so true that when you change the way you look at things, the things you look at change.  As Megan so eloquently said, this holiday season, be thankful for friends, family, and your health…but most importantly, be thankful for your life.

File Nov 25, 8 28 10 PM

 

 

Another Battle Won

Over the past nearly three years, Megan has valiantly fought through 90 weeks of chemotherapy, over 100 radiation treatments, two surgeries, and countless CT, MRI and PET scans…along with the plethora of physical and mental side effect that come with fighting cancer, which are too numerous to mention.  When Megan completed her first 54 week bout with chemo, we were ecstatic.  We were so thrilled that our little girl had defied all of the odds and beaten stage 4 Alveolar Rhabdomyosarcoma.  We were overjoyed and so relieved that she would not longer have to tolerate the awful side effects of chemotherapy.  On this blog, I wrote at length about her finally reaching the finish line with her arms raised in victory.  Little did I know how naive we really were about the omnipresent grasp of childhood cancer.

We were crushed when we learned of Megan’s relapse in February, 2017.  We were even more dismayed when Dr. Salvi informed us she would have to go through another 36 week regiment of chemotherapy and radiation treatments.  Just when she was starting to get her life back, cancer struck again.  Through it all, Megan has never lost her determination, and more importantly, she kept that infectious smile.  In fact, this time around, she has become even more determined to not only win her own personal battle, but to take up an even bigger fight by advocating for childhood cancer awareness, and even raising money herself to help fund important research aimed at eradicating this vicious disease from the planet.  As I continue to say, Megan may have cancer, but cancer has never had her.

_DSC7759edit This past Monday, Megan once again defied the odds by completing her relapse treatment protocol.  We were so proud of her!!!  We got to the CDH clinic Monday morning and we watched Nurse Jenny hook Megan’s chemo bag on the IV pole for the very last time.  As always, everyone at CDH was awesome.  Those people are the best team of medical professionals we could ever ask for.  All of them are like a part of our family now.  Without their caring and expertise, I really don’t believe Megan would have been able to defy the overwhelming odds and beat down cancer.  We owe all of them so much that I don’t know how we could ever repay them.  Here are a few pictures of Megan’s last chemo treatment.

File Nov 13, 4 46 00 PM
After her final treatment, Megan read a special poem the team at CDH wrote for her. Then she got to ring the bell which signals the triumphant end to her chemo treatments!!!
File Nov 13, 4 44 41 PM
A very happy, proud, and relieved mom and dad.
File Nov 13, 4 45 25 PM
Megan’s medical team at the CDH clinic. What an amazing group of people. We are so grateful to all of them!!!  Nurse Jenny is just to the right of Megan as you look at this picture.  She has also been with Megan since Day #1 of this journey, so she has seen Megan through some of her toughest times.  I always say she and Megan would make great sisters as they love to banter back and forth, which always ends up in lots of laughs.  Also, Dr. Hayani is on the far left and Dr. Salvi is on the far right.  They are incredible and deserve so much credit for bringing Megan to this point in her recovery.  Everyone in this picture has played an important role in Megan’s recovery, but I did want to highlight those who have been by her side since the beginning.
File Nov 13, 4 45 01 PM
Nurse Kathy is extra special to Megan and our family. Throughout the past three years, she has always been there for all of us. Megan texts her whenever she has a question or concern, and Kathy is always…and I mean always… there.  One of my favorite Kathy stories is a time when Megan had a high fever and we had to have her admitted to the hospital on a weekend.  The ER nurse could not access Megan’s port.  Deb called Kathy and even though it was about midnight on a Saturday, and she was on a medical leave of her own, she still came to the hospital to access Megan’s port.  That’s just the kind of person she is.  Megan calls Kathy her second mom at CDH. She is a very special lady and she will always be a part of our family.

After finishing her treatment and celebrating at the clinic, Megan came home and fell asleep for four hours to shake off the effects of her final chemo treatment.  She actually recovered pretty well as she was able to go to school on Tuesday afternoon.  When she got to her class, Mr. Micetich surprised her with a celebration cake.  It was so nice of Mr. Micetich and the class to help her celebrate her victory.

File Nov 14, 9 56 05 PM

File Nov 14, 9 55 35 PM

Although Megan had a good day on Tuesday, she could tell she had a sickness coming on as she was all congested and her throat hurt.  The timing was really bad because Megan had really been working hard to prepare for the high school spring musical auditions.  They are performing “Les Miserables”, and Megan really wanted to land a spot in the cast.  As readers of this blog know, Megan loves the theater, and being involved in the musical production really helps to keep her mind off of the fact that she is fighting cancer.  Although her throat was killing her and she somewhat lost her voice, she still made it through the audition and landed a role in the ensemble.  She was a little disappointed because she thought she could have landed a little bigger role and she felt better, but she was just happy to a part of the production.

On Saturday afternoon, Deb, Megan and Megan’s friend Grace met me in Chicago.  I was there for the School Board Convention, so we had decided to have Megan and a friend come up as a way to celebrate Megan’s completion of chemotherapy.  Although it was cold and rainy, we still had a great time.  On Saturday night we went out for supper and then went to the Cadillac Theater to watch the musical production of “School of Rock”.  On Sunday morning we went to Megan’s favorite breakfast spot, “The West Egg”, before heading back home.  Although we had lots of fun, all of the walking was pretty taxing for Megan, so when we got home, she actually slept for about four hours.  90 weeks of chemotherapy has definitely taken an extreme toll on her strength and stamina.  Now that she has that behind her, we are hopeful she can start to slowly regain what she lost due to cancer.  It will be a long road, but I have learned to never sell Megan short!  Here are a few pictures we took in Chicago.

File Nov 19, 3 21 47 PM
Megan and Grace by the Christmas tree at Macy’s on State Street.
File Nov 19, 11 28 29 AM
In front of one of the famous holiday windows outside Macy’s.

We are so happy that Megan has completed her final 36 weeks of chemotherapy.  No child should ever have to endure what she has been through for the past almost three years.  Although we are relieved, we know the real moment of truth is coming on December 4 and 5, which is when she will receive her CT, MRI and PET scans.  We then have an appointment on December 6 to meet with her doctors to get the results of the scans and map out her future.  This time around, we are smart enough to know that Megan has won yet another battle, but the war will continue.  Cancer is so evil and it doesn’t give up easily, but then again…neither does Megan.

We hope everyone has a very Happy Thanksgiving.  Megan has finished her chemo treatments and Kenzi is coming home on Monday night.  It’s going to be a very happy week in the Bugg household, because there is nothing better than having our family together.

As Megan likes to remind people, this holiday season, please be thankful for what you have because there are so many people who have it worse than you.  Given all that Megan has been through, if she can still live by that motto, then surely the rest of us can.  Happy Thanksgiving!!!

Time to Turn the Page

90 weeks.  90 very long and arduous weeks.  90 weeks no child should ever have to endure.  On Monday, Megan will have completed her 90th week of chemotherapy.  When she was first diagnosed in December 2014, her doctors prescribed a 54 week combination of chemotherapy and radiation.  Those 54 weeks ravaged Megan’s body, but at the end of her treatment, the cancer was gone and she was officially declared in remission.  We celebrated like never before only to have our hearts broken in February, 2017 when a cancerous tumor was found in her left breast, which meant she had relapsed.  We were so hopeful that she would only need surgery to remove the tumor, but her oncologists broke the news that she would need 36 more weeks of chemotherapy.  We were crushed to know she would have to go through that excruciating process all over again.  However, as she has done so many times before, she stared cancer straight in the eye and refused to give in.  I will never forget her first chemotherapy treatment after her relapse.  We were in her hospital room and I was getting quite emotional watching the nurse hang the first bag of chemo.  Watching your child get that poison dripped into his/her body is something I would never wish on anyone.  As I watched the IV drip start, I had tears in my eyes, but that’s when Megan looked at me with that infectious smile of hers and said, “Don’t be sad dad.  It will be okay.”  Once again, another perfect example of how throughout this journey, I think Megan has taken better care of us than we have of her.

Now…here we are 36 weeks later and Megan is ready to receive her final chemo treatment.  Another chapter in her incredible story of bravery, determination and grace is coming to a close.  After experiencing her relapse, we now are a little more educated and realistic about cancer than we were the first go around.  We will definitely celebrate her final treatment, and we will be so thankful that she will no longer receive any more of those nasty chemo treatments that have caused so much havoc on her body.  However, we also know that this is just one more step in her recovery process.  Megan has won another battle, but the war will continue.

Following her final treatment on Monday, we will wait until the week of December 4 when she will receive a CT, MRI and PET scan.  When those come back with no evidence of disease (NED), we will breath another sigh of relief and know that she has taken yet another giant step towards her full recovery from this vicious and heartless disease.  Once she is declared to be in remission, we will then go back to the routine of living three months at a time, which is the time between her scans.  It’s a long, stressful and tedious road, but if anyone can beat cancer, I know it’s Megan.

Last Monday, Megan went to CDH for her next to last chemo treatment.  As I have said many times, although she hates getting those chemo treatments, she adores all of her medical caregivers at CDH.  Over the past three years, they have all become an important part of our family, and Megan loves them all dearly.  We could never thank all of them enough for the love and support they have given to her.  We were so lucky when Dr. Spomenka Jercinovic steered us to Dr. Salvi, Dr. Hayani and their incredible team of professionals at the CDH Clinic.

Megan handled her treatment well, and as usual, spent the afternoon sleeping off the effects of the poison that was coursing through her body looking for cancer cells to destroy.  For the rest of the week, Megan fought some pretty rough stomach issues that made it difficult for her to do much.  She was also very tired, which meant that when she did get out, she couldn’t last for very long.  The cumulative impact of chemotherapy on her body has been rough, and as she closes in on the conclusion of her treatment, her body is exhausted.  She has been fighting so hard, and her body desperately needs a break.  We hope and pray that after Monday her body has seen the last of chemotherapy because it is nasty stuff.

As readers of this blog know, Kenzi is a freshman at the University of Wisconsin in Madison.  She has been taking advantage of the many opportunities such a vibrant campus has to offer.  She has season tickets for both football and men’s basketball, which she really enjoys.  On Saturday morning, the Big Ten Network held their game day pregame show on the UW campus.  Kenzi and her friend Ellyn got up early and made their way to the set to show their support for the Badgers as they prepared to face the Iowa Hawkeyes.  The Big Ten pregame show started at 9:00 a.m. and when we turned it on, we saw Kenzi and Ellyn front and center.  As the broadcast continued, they were on TV for almost 30 minutes straight!  Afterwards, Kenzi called to say she was freezing, but had a blast :). Here are a couple pictures we took of our Badger fan from the television this morning.  We sure miss having Kenzi at home, but we are so proud of everything she is accomplishing as a college student.  It will be so nice to have her home for Thanksgiving!

File Nov 11, 9 22 05 AMFile Nov 11, 9 22 39 AMFile Nov 11, 10 34 52 AM

Megan is very excited to announce the next concert in the “Megan Bugg Concert Series” held in the CCHS Performing Arts Center.  As many of you know, Megan loves music and the theater, and she could not think of a better way to give back to the community that has given her so much love and support than to start a community concert series.  We are so happy to announce that the nationally known acapella group, “Street Corner Symphony” is returning for a holiday concert on Friday, December 1 at 7:00 p.m.  This concert will also feature Gabe Dixon as the opening act, as well as include about 100 high school students from Coal City High School, Wilmington High School, Bradley-Bournbonnais High School, and Morris High School.  Street Corner Symphony has generously offered to hold an instructional seminar in the afternoon and then have the students perform three songs with them during the evening concert.  It should be a lot of fun and a great way to kick off the holiday season.  The last time Street Corner Symphony performed at CCHS, everyone had a blast.  They are also about the nicest group of guys you could ever meet.  When they were here last spring, Megan was too sick to attend, so after the concert, all of the guys came to our house and sang to Megan in her room.  That was one of those beautiful moments we will never, ever forget.  We hope you can join Megan on December 1 for an evening of amazing holiday music.  You can order your tickets online for only $15 at https://www.brownpapertickets.com/event/3134369

Street Corner Symphony appearing in Coal City on December 1st

For the past few weeks, I have been providing updates on a very tough 9 year old boy named Isaiah.  I connected with his mom via social media after Isaiah was diagnosed with a very aggressive form of cancer.  About two weeks ago, Isaiah underwent a 14 hour surgery to remove cancerous tumors from his neck and spinal cord.  Although he came through the surgery, his mom contacted me today to let me know that Isaiah’s cancer has now aggressively spread to his lungs.  They are contacting hospice to keep him comfortable, but still holding out hope.  Please keep Isaiah and his family in your thoughts and prayers.  Cancer is so evil, and I still cannot believe we have not found a way to do better by our kids.  No child deserves to go through this…ever.

Monday we make the early morning trek to CDH for Megan’s final chemo treatment.  We could not be more proud of her.  She has taken every blow cancer has delivered and given it back ten times over.  She has expanded her personal battle to now support all kids who are fighting along with her.  She is determined to continue raising awareness and working towards a cure for this evil disease that devastates the lives of so many of our young people.  Cancer may be tough, but it has never seen the likes of Megan.  Another battle is coming to an end, but for Megan, the war continues.  There is still far too much to fight for.

Until next week…

File Nov 12, 11 01 57 AM

File Nov 10, 8 56 47 PMFile Nov 10, 8 57 39 PM

 

The Paradox of Time

On Christmas Day, 2014, we first discovered the tumor on Megan’s left forearm, and from that point on, our lives were forever changed.  Megan was just starting her 8th grade year of volleyball, and Kenzi was playing in the varsity girls basketball Lisle Holiday Tournament.  When fighting cancer, it’s strange how the time can simultaneously creep by and yet also go so incredibly fast.  Over the past nearly three years, we have watched the minutes, and sometimes even the seconds, creep slowly by as Megan’s chemo treatments caused her a level of discomfort, and sometimes agony, that no child should ever have to experience.  We have watched time stand still as Megan was rushed to intensive care with a sepsis that led to c-diff and caused her to be in ICU for nine days.  We have watched the clock creep by as we awaited scan result after scan result hoping for no sign of her cancer returning.  There have been so many times throughout Megan’s Journey that I swear it was like the movie “Groundhog Day” and we were just reliving the same nightmare day after day.

At the same time, it’s hard to believe all that has happened since that fateful Christmas of 2014.  Somehow, our little 14 year girl is now 16 and driving.  Cancer has forced Megan to grow up way to fast, but her experience has turned her into a passionate and caring individual who does not take no for an answer.  She has gone from a very shy 8th grader to a mature and confident 16 year old who is not afraid to aggressively advocate for herself and all of the other children fighting cancer along with her.  Three years ago, Megan would have never asked a question of her doctors.  In fact, it made her very uncomfortable when Deb or I would aggressively question her doctors about her treatment and care.  But now…we seldom have to ask a question because Megan has become her own best advocate.  If she has questions, she asks her doctors directly.  If she has questions on days she is not at the hospital, she texts Nurse Kathy and asks right away.  She has also become a vocal proponent for our government’s complete lack of support for childhood cancer research.  However, instead of just complaining about it, she is determined to make a different.  In just two short months, Megan has now raised over $10,000 to support Dr. Walterhouse’s research on Alveolar Rhabdomyosarcoma being conducted at Luries Children’s Hospital in Chicago.  Even though Childhood Cancer Awareness Month came and went with September, Megan is not slowing down.  Yes…our little girl has been forced to grow up quickly, and we could not be more proud of her.

Kenzi was able to come home this weekend from the University of Wisconsin.  It was Parents Weekend on campus, but since Megan had her tough in-patient treatment last Monday, we had no idea what kind of condition she would be in this weekend.  Given that uncertainty, it just seemed smarter for Kenzi to spend the weekend with us at home instead of all of us traveling to Madison.  It turned out to be a good decision as Megan really wasn’t feeling the best today.  Having Kenzi home for the weekend was yet another reminder of how quickly the last three years of passed.  Kenzi was only a sophomore when Megan was diagnosed, and yet with all of the chaos and uncertainty facing our family, she was somehow able to maintain her laser-like focus and accomplish everything she set her mind to.  That sophomore year, she was a varsity volleyball and basketball player; went to State in Speech; had a part in the high school musical, and was in Madrigals.  She continued to excel in all of her extra-curricular activities throughout high school while also setting some lofty academic goals for herself.  Her dreams and hard work were realized when she was accepted to her dream school, the University of Wisconsin.  Now she is a Biology major working towards her next dream of pursuing medical school and becoming a doctor working with pediatric cancer patients.  Watching her come home this weekend and then pack up to leave just an hour ago made me realize just how fast the last three years of gone.  It’s sure strange how cancer can cause time to become such a paradox…but that’s what cancer does…it takes all of the certainty out of life and turns it unto utter chaos.

Speaking of Kenzi being home for the weekend, it was funny watching Megan teach her to crochet.  Aunt Tammi taught Megan to crochet as a way to pass the time when she was in the hospital.  Megan kind of forgot about it, but pulled out her crochet bag last week and started at it again.  When Kenzi was home, she saw Megan doing it and wanted to learn.  It was a quite a process, but Megan was a pretty good teacher 🙂  Kenzi thought it would be a good way to relax between study sessions at school.

File Nov 05, 10 42 09 AM

And sometimes, it’s just nice to have both girls together again.

File Nov 04, 10 03 14 AM

Megan’s week started on Monday with her final in-patient chemo treatment of this 36 week protocol.  Megan loves all of the people at CDH, but she really hates the long hospital stays, so she was happy to get through her final in-patient treatment.  As always, everyone at the hospital took such good care of her.  Nurse Jordyn cared for her, and she and Megan spent lots of time talking about babies (Jordyn is pregnant and due in about a week and half) and just about any other topic that took Megan’s mind off of the poison slowly dripping into her body.  Megan even got a visit from one of her favorite nurses, Jodi, who took such good care of her in March, 2015 when Megan spent nine days in intensive care.  Megan’s eyes lit up when she saw Nurse Jodi, and they shared a very special hug.  The nurses even decorated her room in honor of her last in-patient treatment.

File Oct 30, 9 58 55 AM

Megan also got a visit from some superheroes in honor of Halloween, which she thought was pretty funny 🙂

File Nov 05, 10 44 25 AM

Luckily, Megan handled her treatment well, and at about 9:00 p.m. she got released back home to the comforts of her own bed and her beloved pets.

File Nov 05, 6 09 11 PM

Megan has also started baking again as a few people have asked her to make cupcakes for them.  In preparation for Halloween, Megan went to Ann Gill’s house for a cupcake baking party.  She had so much fun, and the cupcakes they made together were awesome!

File Nov 05, 10 46 13 AM

This weekend, Megan also baked cupcakes for a birthday party for one of her former teacher’s daughter.  Megan was happy to see Mrs. Bass and enjoyed making some tie dye cupcakes for the party.  Here she is working to get them finished.

File Nov 04, 10 04 00 AMFile Nov 04, 10 03 30 AM

Megan continues to work hard at raising money to support Dr. Walterhouse’s promising research at Luries Children’s Hospital on treating Alveolar Rhabdomyosarcoma.  Thanks to the generosity of many of her supporters, Megan has been able to raise another $1,500 since she presented her initial $9,191 check to Dr. Walterhouse last week.  Reed-Custer School District held a Jeans Day for their staff, which raised nearly $700.  Coal City Middle School held a fundraiser on Halloween and raised another $175.  One of the most special fundraisers was held by the Freeport Aquin High School volleyball team.  Megan didn’t know anyone on the team, but one of the girls reached out to her and said their team wanted to dedicate their cancer awareness game to Megan and her chosen charity.  Megan was amazed when they sent her a check this week for $800 made out to Luries Children’s Hospital!!!  Megan is so appreciative to all of the volleyball players from Freeport Aquin High School.  Thanks girls!!!  The money these girls raised will help further the important research being done by Dr. Walterhouse.  It’s a shame that in a country as advanced as ours, that we have to leave it to the kindness of children to raise the necessary funds to find a cure for a disease as ravaging as childhood cancer.  Here is a picture of Megan with the poster that the Aquin volleyball team sent to her.

File Nov 05, 10 43 46 AM

Megan heads back to CDH on Monday morning to continue the battle.  She will receive two chemo infusions and hopefully be back home sometime after lunch to sleep it off.  After this week, she only has one more chemo treatment left to complete her current 36 week chemotherapy schedule.  Once she completes next week’s treatment, she will then get an MRI, CT, and PET scan right after Thanksgiving.  Megan is nearing the end of another battle, but the war continues.  Such is the harsh reality of fighting childhood cancer.

Until next week…

File Oct 24, 9 18 28 PM

 

Paying It Forward

Readers of this blog know that Megan’s passion has become raising awareness for childhood cancer.  Specifically, she is now painfully aware of the lack of Federal funding dedicated to researching childhood cancer, and the impact it has had on kids like her.  Currently, only 4% of Federal funding allocated towards cancer research goes to childhood cancer.  This lack of progress in research shows in the archaic chemo drugs still used to treat kids with cancer.  Megan and other kids in her situation are being treated with many of the same chemo drugs that were used 20 years ago.  In a country as technologically advanced as ours, I am still amazed that we sit back and accept this as okay.  The medical field has made unbelievable advanced in the treatment of breast cancer, prostate cancer, and many other types of cancer, but the treatment for our kids remains stagnant.  How can we continue to justify this lack of attention and caring towards our most precious resource–our kids?

As Megan has traveled this journey, she has become acutely aware and increasingly angry about the Federal government and the scientific field essentially ignoring her and others like her.  She has watched helplessly as her friends have died from childhood cancer.  She continues to connect with kids all over the world who have been diagnosed with various forms of childhood cancer and she encourages them to fight with everything they have.  She travels across the country to meet her fellow cancer fighters to make sure she can talk with them personally, because she never knows when cancer will take them from her.  She sends get well videos to brave kids like Isaiah who are currently fighting for their lives.

Speaking of Isaiah, I mentioned him in last week’s post.  Last Monday, he had a 14 hour surgery to remove cancerous tumors from his neck that were wrapped around his spinal cord.  His mother was so appreciative and touched by all of the thoughts and prayers sent out by everyone on “Team Megan”.  Immediately following his surgery, things looked good as Isaiah was fighting, and was even well enough to listen to the get well video Megan sent to him.  However, his mom contacted me this morning to let me know that Isaiah is really struggling with his recovery.  Since Wednesday, he has been fighting pneumonia, and on Saturday he suffered a collapsed lung.  After draining and inflating the lung, they found that he had dark spots in his pleural cavity, which the doctors confirmed was cancer in his lungs.  Isaiah is a fighter, but he needs everyone’s thoughts and prayers more than ever.  Isaiah is only 9 years old.  How many more kids have to suffer like this before we decide enough is enough?  You will never convince me that with adequate funding a country as great as ours could not find a cure for this disease.  At some point, we have to get our priorities straight.  However, until that happens, we will keep supporting brave little boys like Isaiah…and we will also take matters into our own hands.

When Megan discovered the terrible lack of funding for childhood cancer, she had two choices.  She could either feel sorry for herself, or she could do something about it.  Anyone who has followed Megan’s story for the past three years knows which avenue she chose; she decided to do something about it.  Most everyone is familiar with her Ivory Ella fundraiser, which raised money for Boston Children’s Hospital.  However, Megan also became aware of some cutting edge research being conducted by Dr. Walterhouse at Luries Children’s Hospital in Chicago.  Megan’s oncologists are a part of the Luries hospital system, and Deb and I even met with Dr. Walterhouse at one point to discuss Megan’s relapse treatment plan.  When Megan learned of his research, she decided to devote Childhood Cancer Awareness Month (September) to raising funds to support his research.  With the help of many very kind supporters, Megan was able to raise $9,151 dollars to support this important research.  After lots of planning, we were able to meet with Dr. Walterhouse on Friday to hand deliver the money to him.  Megan was so excited for this event, and it definitely did not disappoint.

When we met with Dr. Walterhouse, he was so kind to further explain his research to Megan.  I think he was amazed at the depth of questions Megan asked him about her cancer and its relationship to his research.  Every time she asked him a question, he would look at us with a quizzical grin wondering how Megan had become so educated.  However, when you have lived with something like cancer for nearly three years, you tend to become somewhat of an expert on the topic…which Megan has definitely become.  Dr. Walterhouse was so kind to spend nearly an hour out of his busy day with us.  What was most amazing was when Megan asked him how many days of research she funded with her $9,151 donation.  He said that her money would fund supplies for about 6 months of research!!!  Megan was absolutely amazed, and we could tell how appreciative Dr. Walterhouse was.  He reinforced what we knew about a severe lack of funding for childhood cancer research.  He said that Federal grant funds for childhood cancer are so limited, and therefore very competitive, so very few research projects get funded.  He said that the funding for his research comes from donations like Megan’s.  How sad is it that the kids and families of cancer victims are forced to fund the research to try and save their kids’ lives?  Megan is literally the funding the research that could save her life and the lives of so many other kids.  It’s so sad that it has to be this way, but we could not be more proud of her.  Here are a couple pictures from the check presentation.

File Oct 27, 8 51 17 PMIMG_6166

Megan worked so hard to spread the word for this fundraising effort, but it would not have been possible without the kindness and generosity of so many people.

Here is a quick list of thank you’s to the people who spearheaded fundraising efforts or just donated money to the cause.  We could never thank all of you enough, as your money could quite possibly save the lives of so many kids.

Anyone wanting to donate to support Dr Walterhouse’s research on Alveolar Rhabdomyosarcoma can send money to

Luries Children’s Hospital

225 E Chicago Ave, Box #4, Chicago, IL 60611

On the memo line of the check, write “GLI  Genetic Research Fund 953930”

After the excitement of the check presentation, our Friday was only going to get better because Kenzi was coming home for the weekend.  Kenzi and I planned on going to the University of Illinois vs. University of Wisconsin football game in Champaign on Saturday.  Deb’s cousin Sally kindly agreed to pick Kenzi up from a bus in Rockford, and we all met in Morris for supper.  We decided to surprise Kenzi by having her best friend from high school, Leah, meet us for supper.  Leah was home from college for her fall break, but Kenzi had no idea she was meeting us for supper.  The look on Kenzi’s face when she saw Leah was priceless.  It was so much fun.

File Oct 27, 8 50 40 PM

Deb and Megan planned a big shopping trip while Kenzi and I went to the football game.  It was so cold and it even snowed on us a couple times, but we had a great time.  I am a proud University of Illinois alum, but while Kenzi is going to Wisconsin, I have to show my support for her, so she got me to wear the red and white.  Since Wisconsin is really good this year, I guess you could call me a front runner 🙂  It was so good to spend the day with her…even though we nearly froze to death!

File Oct 28, 1 04 29 PMFile Oct 28, 1 04 56 PM

When we got home from the game, Megan and Deb were just pulling in from their long shopping trip.  Megan’s good friend Katelyn went with them as well.  Megan was pretty exhausted after such a long day, but she said she had lots of fun.

File Oct 28, 6 00 28 PM

That night, things even got better because Makenna Emerson stopped over for a visit to catch up with Kenzi.

File Oct 28, 9 08 10 PM

On Sunday, Kenzi’s boyfriend Nick joined us as we all went out for lunch before Kenzi headed back to Madison.  It was so good to see her, and we could not be more proud of everything she is accomplishing as a Wisconsin Badger.

During Megan’s three week cycles, she usually starts to feel her best by Wednesday of the third week.  She took advantage of that by participating in the “Haunted Hallways” event at CCHS.  Mack Micetich asked Megan to dress up as Cinderella as part of the Drama Club’s hallway and pass out candy to the kids.  Megan had a blast!  Here are a couple pictures of our princess 🙂

Tomorrow morning, we head out at 6:45 a.m. for the start of Megan’s 12th and final round of chemo!!!  This will be her final in-patient stay at CDH, which is a huge hurdle.  After Megan completes this last three week cycle, we will then wait a couple weeks before she receives her end of treatment scans.  Let’s hope she responds well again tomorrow and gets released to come home to the comforts of her own room and her beloved pets.  The battle continues tomorrow…

File Oct 25, 8 20 38 PM

The Homestretch Can Be the Hardest

On Monday, Megan heads back to CDH for her last treatment of Round #11, which means she only has one more three week cycle to go to complete her current 36 week chemo treatment schedule.  When Megan was initially diagnosed in December, 2014, she was prescribed a 54 week chemo/radiation schedule.  I will never forget how we anxiously counted down the months, weeks and days until she finally crossed the finish line and triumphantly completed the most difficult ordeal I have ever seen a kid go through.  We watched her fight through each day of those 54 weeks as she threw up, dealt with painful neuropathy, awful mouth sores, foot drop, frequent hospital stays due to unexpected fevers, heart damage, hormone issues, and even a nine day stay in intensive care with a dangerous sepsis that nearly took her from us.  When she finally crossed that finish line, it was an amazing feeling as she was finally declared to be in remission, and it was time for her to regain the life that cancer unceremoniously tried to steal away from her.  It was a euphoric feeling of accomplishment and celebration.  Unfortunately, cancer had other ideas.

After being in remission for nearly a year, Megan felt a lump in her left breast.  Not even her doctors believed it was a relapse of her cancer, but Megan seemed to know better.  She insisted on a scan and further testing, and to our dismay, in February, 2017 Megan had officially relapsed.  We really hoped that since her scans showed it was an isolated tumor that she could avoid chemotherapy, but her doctors said she would have to endure another 36 week chemotherapy protocol complete with more proton radiation and surgical removal of the tumor.  Once again, Megan has faced this current challenge with a grace and dignity that far defies her tender age.  She continues to face this fight with a determination and positive attitude that defies all logic.  Cancer has forced our little girl to grow up far faster than she should have.  She has stared her own mortality in the mirror and refused to ever give in.  In fact, she has now expanded her personal battle into a much bigger fight focused on all kids who are fighting childhood cancer.  She is committed to using her experience to shine a light on the need for more Federal funding for childhood cancer research.  She is determined to comfort other kids who have joined her in this fight, and she will not quit until people start listening.  We could not be more proud of her!!!

Now that Megan is nearing the conclusion of her current treatment protocol, it seems like we should all be much more excited than we are.  It just seems different this second time around, and I think that’s because we have all learned some lessons from her first experience.  Although we are so happy that she only has three more weeks of that poison going through her body, we have learned to temper our enthusiasm.  We have learned that Megan is not crossing a real finish line.  Instead, she is finishing yet another leg in this very long and arduous relay race.  Although we will not miss the opportunity to acknowledge and celebrate Megan’s incredible success, we will also remain cautious.  We will remain wary.  We remain diligent.  We will remain on edge, because we have learned that cancer is a formidable foe that will not back down easily.  Yes…the end of Megan’s current 36 week chemo treatment is getting close, but it will not mark the end of Megan’s Journey.  The cruel truth of childhood cancer is that Megan will be dealing with this battle for at least the rest of her teenage years.  After that, it will always be a part of her life as even once she finally beats this beast, she will have annual scans for the rest of her life.  Such is the plight that childhood cancer inflicts on its victims.  Make no mistake…Megan will win this battle because she is far too tough and determined for cancer to beat her, but we must do better by our kids.  We have to continue to raise awareness so everyone understands the need to invest more dollars and place more focus on finding cures for childhood cancer.  Our kids deserve it!

As Megan moves towards the end of her 36 week chemo treatment, her body is getting very tired.  Last Monday, Megan went to CDH to receive two different chemo treatments, which is the norm for her second treatment in a three week cycle.  As she continues to move through her cycles, it takes her body a little longer to recover each time.  This week, she has been extremely tired to the point that she can only go for a couple hours at a time before needing to rest.  She has also been fighting frequent headaches, and then this weekend, those nasty mouth sores started to return.  As I have said many times before, chemotherapy is both the hero and the villain of this story.  It is the hero because it is eradicating the cancer cells in Megan’s body, but that doesn’t come without a steep price, which is the villainous aspect of the poison.  It seems crazy that in a country as advanced as ours that we are still using such archaic treatments with such devastating side effects on our children.

In between rests, Megan was able to do a few things this week.  She went to watch her former volleyball teammates pick up a big victory on Tuesday evening at CCHS.  She also went out for lunch with a couple friends on Wednesday, because it was an early dismissal day in our school district.  On Saturday, Grandpa and Grandma Coope came over for a visit.  When the girls were little, Grandpa Coope used to come every October to carve pumpkins with the girls.  We haven’t done that in a few years, but this year, Megan wanted to have a special pumpkin carved.  We called Grandpa and Grandma Coope and they came right down for a big pumpkin carving session.  Megan wanted a cancer ribbon carved into her pumpkin, and even though Kenzi is away at college, Grandpa also carved a special University of Wisconsin pumpkin for her.  We had a great time.  To top it off, Makenna Emerson was home from college for the weekend and hung out with Megan all afternoon.  Here are a few pictures from the day.

File Oct 21, 4 23 49 PMFile Oct 21, 4 24 18 PMFile Oct 21, 4 24 49 PMFile Oct 21, 4 25 05 PMFile Oct 21, 4 25 22 PM

Tomorrow morning, Megan has to be back at CDH at 8:15 a.m. for her final treatment of Round #11.  She has been very tired and struggling with headaches, which is usually a sign that her hemoglobin count is low.  If that’s the case, she could receive a transfusion tomorrow as well as her chemo treatment.  Let’s hope tomorrow goes well and Megan can put yet another round of chemo in the rearview mirror.

One last note for everyone on Team Megan…a brave little 9 year old boy from England named Isaiah is currently battling cancer.  He has a large tumor wrapped around his spinal cord that was unresponsive to radiation treatments.  He is scheduled for a very important surgery on Monday as doctors try to remove the tumor in a very dangerous and delicate procedure.  I recently connected with Isaiah’s mother, and my heart goes out to her, Isaiah, and their family.  Please send positive thoughts and prayers to Isaiah, his family and his doctors tomorrow.  Best wishes Isaiah!  Keep fighting!!!

Until next week…

File Oct 18, 10 35 39 AM