Back on the Stage

It has now been 698 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  On January 25, 2016, Megan officially crossed the finish line as she completed her 54 week chemotherapy/radiation protocol and her doctors finally declared her cancer to be in remission.  That was definitely a momentous occasion worthy of celebration as reaching remission was a testament to Megan’s incredible will to win.  Although we are all thankful that Megan won her battle, life as a cancer survivor has presented challenges that none of us expected.  The “scanxiety” than accompanies each three month scan is a brutal mental experience for Megan and our family.  She is still learning to cope with the fear that comes with every headache, bump, bruise, cough or fever.  For the past couple of months, bouts of dizziness had gotten to the point that everyday activities were becoming very difficult for Megan.  After numerous tests and doctors, she finally found some relief over the Thanksgiving holiday with medication for hormone therapy.  Although she still seems to get more headaches than she should, the extreme dizziness seems to have been mitigated with the new medication.  As a result, Megan has been able to get out of the house more without the fear, trepidation and anxiety attacks she had been experiencing.  It still seems like she should be feeling better than she does, but the last two weeks have definitely been a step in the right direction.

We originally discovered Megan’s tumor on Christmas Day, 2014.  Prior to that, she had been involved in 8th grade basketball and had just started her next volleyball season.  Although she tolerated athletics, sports was definitely not her primary interest.  In October, 2014, Megan participated in the middle school musical production of “High School Musical 2”.  It was that experience that hooked her on the theater.  To this day, she would tell you that was the most fun she had ever had in school.  Unfortunately, Megan’s illness and treatment kept her from participating in anything on stage for the past nearly two years.  On Thursday, Megan made her first appearance back on stage, which to me seemed like a momentous event.  Megan signed up to take chorus this year at the high school, and on Thursday, they held their winter concert.  Megan was nervous about it, but we were so proud of her for getting through it with a smile on her face.  It was really emotional for me to see her back on stage again.  Hopefully, it was the first of many times we will get to watch her perform over the next couple years.  The chorus sang their first two songs in the aisle of the auditorium, and since Megan told me right where she would be, I was able to get a couple pictures of her singing.

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Following the two songs in the aisle, the chorus then went on stage for their final few songs.  Because of the lighting in the auditorium, it was hard to get a good picture, so this is the best I have😦

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Megan was also happy that Makenna Emerson made the drive back from college to watch her perform.  Makenna always makes Megan smile.

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Thursday night was a busy one for Deb and I because not only was Megan singing in the auditorium, but Kenzi was playing a basketball game in our high school gym, which is only a few steps away.  As a result, Deb and I kept going back and forth between the concert and the game so one of us was always there to support each of our girls.  I’m happy to report that Kenzi’s team won as she scored 12 points in the victory.  It was a great night for our family.

On Saturday, Megan wanted to go to Reed-Custer High School to watch her friend, Katelynn, perform with the CCHS Cheerleaders in a competition.  Megan was happy when our cheerleading team team took 3rd place.  Following the event, Katelynn came over and spent the night at our house.  Here is a picture of Megan and Katelynn immediately following the competition.

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On Saturday, Kenzi and the CCHS Madrigal singers performed at the “Festival of Trees”, which is an annual event sponsored by the CCHS Promfest Committee.  As always, the Madrigals sounded amazing as they serenaded everyone with a variety of holiday songs.  This coming weekend is their annual Madrigal Holiday Dinner and Performance, so it will be a very busy week for Kenzi, because not only does she have three performances, but she also has three basketball games.  Somehow, she has to get to her basketball games and rehearsals this week, which will be a challenge.  I don’t know how she gets it all done, but she seems to thrive the busier she is.  Here is a picture of Megan, Kenzi and Kenzi’s good friend Leah, which I took right before the performance.

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Here are a couple more pictures of Kenzi performing today.

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During Megan’s treatment, she spent a lot of time in physical therapy to try and combat her chemo-induced foot drop.  The people at ATI Physical Therapy in Morris were so wonderful and supportive to her.  Megan hasn’t been there in a couple months, so it was a welcome surprise when she opened the mail on Thursday and received a card signed by everyone at ATI.  Megan said she had a tear in her eye as she read the positive comments from everyone at ATI.  Here is a picture of her holding her card.  Thanks to all of the fantastic people at ATI in Morris!

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This week was better than the last for Megan, which was also better than the week before that.  We are so hopeful the positive trend continues and Megan can keep finding relief from her dizziness and accompanying panic attacks that virtually debilitated her for a few weeks.  We have watched her navigate her way through more trials and tribulations than any teenage girl should ever have to experience.  Although there are some ups and downs, Megan always seems to find a way.  As a survivor, cancer never lets it’s victims completely forget its potential to create mayhem.  On December 12, Megan goes to CDH for her next three month CT scan and then on December 16, she receives an MRI on her brain and orbits.  Hopefully, we receive good news by Monday, December 19 so we can all have a very happy Christmas season.  The week of December 12 will be a tough one for Megan, but hopefully it will all be worth it when she gets the news that her cancer is still in remission.

During her stressful times, there is still nothing better than her pets at providing relief.  In fact, even Kenzi likes to use the pets as an escape from the everyday grind.  I can’t say that I always find our two dogs and two cats to be relaxing, but I’m sure glad we have them for the girls.

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Ophie and Megan share a moment🙂
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…and another moment
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Belushi found Kenzi relaxing on the couch this morning🙂

Until next week…

“Everything Happens for a Reason”

It has now been 691 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  The past few weeks have been pretty tough for Megan as she has been fighting extreme dizziness that has resulted in severe anxiety and panic attacks.  The panic attacks became so severe that they were impacting her quality of life.  Even leaving the house was becoming a chore for fear of experiencing a panic attack in public.  Obviously, functioning at school also became very difficult for her.  Not knowing the root cause of the dizziness was driving Megan crazy because her first thought is always that somehow her cancer has returned and was causing her issues.  Also, she was very frustrated because she knew it was illogical for her to be so panicked, but she felt powerless to stop it.  For the past three weeks, we have been working with Megan’s medical team to try and figure out what was causing the dizziness, because we knew that if we could get to the bottom of that, her anxiety would markedly diminish.  After running into numerous brick walls, we believe we may have had a breakthrough this week.

One of the ramifications of Megan’s intense chemotherapy treatment was damage to her ovaries.  Immediately following her 54 weeks of treatment, Dr. Salvi had Megan see an endocrinologist to check her hormone levels.  At that time, her body showed signs of mending itself, so hormone therapy was not necessary.  However, as Megan starting experiencing dizzy spells, Dr. Salvi noticed that during some blood work, her hormone levels were very low.  He thought that the dizziness and hot flashes could all be signs of her low hormone level causing her to be pre-menapausal.  Two weeks ago, Megan went back to her endocrinologist who verified that her hormone levels were very low.  He started Megan on some medication, but Megan didn’t react well to it.  In fact, it actually caused her dizziness to increase.  After a couple different discussions, the doctor started Megan on another medication, which seemed to start working very quickly.  Within a couple days, Megan’s dizzy spells virtually disappeared…and what a difference it has made in her life!!!

Over the past few weeks, even getting in the car to go see Kenzi’s basketball games has been difficult for Megan.  Every time she left the house, she would get so anxious about having a dizzy spell in public.  It got to the point that she was so worried she would not be able to go to Grandma and Grandpa Bugg’s house for Thanksgiving.  However, we were all so thrilled when she did great all weekend.  She came to Kenzi’s game in Beecher on Tuesday…where Kenzi had 16 points and the Lady Coalers pulled out a victory!  She also was able to make the 3 hour trip to the Bugg family farm on Thanksgiving day with no problem whatsoever.  She even asked if she could go with me to the high school to watch our high school boys team play in our holiday tournament.  I can’t begin to tell you how relieved we were to have the old Megan back.  Although she had a tremendous weekend, we know that going to school on Monday will be a big test for her, but hopefully all of the positive experiences she had this weekend will give her the confidence she needs to find success.  She is truly a warrior unlike anything I have ever seen.  I am so proud of her!

Speaking of being a proud dad, Monday night was the Lady Coaler volleyball awards ceremony at the high school.  We were so proud of Kenzi as she earned a place on the Academic All-Conference Team.  She was also chosen as a first team Interstate-8 All Conference player for the second year in a row.  As I mentioned in last week’s post, she was recognized as a Kankakee Journal All-Area player, and to top it off, she was awarded the team MVP by her coach.  Kenzi had a great season and career in Coaler volleyball.  She worked so hard and we were so proud of her accomplishments.  It’s going to be strange not seeing her run the show from the setter position next season😦

We had so much fun seeing family and friends over the Thanksgiving holiday.  Wednesday night, we had to get some food ready that we planned to bring to the Thanksgiving feast at Grandpa and Grandma Bugg’s on Thursday.  The girls both helped us get everything prepared so we were ready to leave at about 8:00 a.m. on Thursday morning.  It was so good to see everyone!  Uncle Todd and Gina drove down from Bloomington, and Aunt Amy made the drive all the way from Kansas City.  Uncle Matt and Aunt Amy had lunch obligations with Amy’s side of the family, but they drove out later in the afternoon so we could visit with them.  It’s always good to get together at the family farm.  Here is a picture of everyone as we prepared to eat some awesome food.  Unfortunately, Grandpa Bugg took the picture, which means he wasn’t in it.  I am getting so bad about taking pictures, so I forgot to get a picture of him with the girls.  Sorry Grandpa😦

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We were all home on Friday, but there was lots of food to make because we were hosting another Thanksgiving meal at our house on Saturday for Deb’s side of the family as well as some friends.  We planned on having 14 people over.  Kenzi was busy that day as she was gone all afternoon and most of the evening with a Madrigal performance.  They were singing Christmas carols for an event in Morris.  As a result, Megan was left to assist us in the kitchen, and she was so much help.  Cooking with the girls is something I really enjoy…and I’m pretty sure they tolerate it too :)  That evening, we all went to Morris to listen to Kenzi and the Madrigals sing during the Morris Christmas parade.  As always, they sounded amazing.

On Saturday, we had a big group at our house for lunch.  Uncle Todd and Gina drove up and we were thrilled when his kids, Danny and Emily, and her husband Matt all made the trip.  They joined Deb’s side of the family as well as Jack Micetich and Sherfy Browning.  We had a great time.  Here is a picture of the “kids” table.  Uncle Todd still hasn’t graduated to the adult table yet.  I’m pretty sure he thinks the kids are more fun🙂

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After dinner, there was a big game playing marathon.  I think the neighbors could have heard everyone laughing!🙂

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Of course, after a big turkey dinner, not everyone had the energy to play games…which Buddy was very happy about.

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On Sunday, we spent the day decorating our house for Christmas.  Here is a picture of the girls putting up their stockings.

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On Saturday evening, I was helping Megan with some of her English homework.  She had an assignment were she had to respond to some questions from her teacher.  One of the questions asked “If you could change anything about your past, what would it be?”  Of course, I immediately expected Megan to emphatically state that she wished she never had cancer.  I mean, how much more obvious of an answer could there be?  Much to my surprise, Megan typed the following,

“Although I have had some bad things happen to me, I wouldn’t change anything because I believe that everything happens for a reason.”

The next question asked “Why do you think people are obsessed with the past, and is it a good or bad thing?”  Once again, I found Megan’s response so insightful.

“I think people are obsessed with the past, because they are always wondering if their life would have turned out better had they made different decisions.  I think this is bad because you can’t do anything about the past, but you can focus on moving forward and looking for the positive things in life.”

If there is any kid who has the absolute right to be bitter about life, it’s Megan.  She has been dealt a terrible hand, and yet through it all, she harbors no bitterness or anger.  Instead, she is thankful for the blessings she has received, and her focus is on moving forward and looking for the positive things in life.  If Megan can have such a positive outlook on life, then can’t we all?  Now that would be a true Thanksgiving blessing.

Here are a couple of pet pictures to carry you through until next week…

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Trying to Catch a Break

It has now been 684 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  As I reported last week, for the past month, Megan has been dealing with severe dizzy spells that have reached the point of seriously impacting her quality of life.  It is not only becoming very frustrating for Megan, but it is also causing her to fight with bouts of serious anxiety and panic that tend to start with her dizzy spells.  Her medical team has been trying to get to the bottom of the issue, and last week we were very hopeful that last Monday’s appointment with her endocrinologist would be the answer.  Megan was so eager for that appointment because she desperately wants to return to the “normal” teenage life she was starting to enjoy.  Unfortunately, her wish was not granted.

Deb took Megan to Monday’s appointment, and all of us were really hoping we would at least start to get to the bottom of her dizzy issues.  Megan called me following her appointment, and I could tell by the sound of her voice that it didn’t go well.  Her intense 54 week chemotherapy treatment played havoc with her hormone levels.  Although her levels were showing improvement following treatment, Dr. Salvi noticed that her latest blood tests showed her hormone levels dropping again.  Dr. Salvi seemed convinced that this could likely be the cause of her dizziness.  Unfortunately, the endocrinologist did not necessarily confirm that diagnosis.  He said it could be contributing, but even so, it would take at least a month of hormone therapy before Megan would find relief.  Obviously, Megan was devastated as she was hoping that the doctor would be able to diagnose her and provide a medication that would immediately alleviate her dizzy spells.  To say Megan was disappointed would be an understatement.  Throughout her treatment, Megan’s positive attitude and resolve was incredible to witness, but everyone has their limit.  I am worried that if we don’t find a solution to this issue soon, Megan might actually reach hers.  She just wants to live her life without cancer’s omnipresence continually haunting her.  I really don’t think that’s too much for her to ask…especially after all she has endured to this point.

So where do we go from here?  Megan has another appointment at CDH on Tuesday and we are going to try and see her oncologist on the same day to develop the next plan of action.  There is still a chance all of this is hormone related, but Megan also seems to be having a reaction to the medicine prescribed by her endocrinologist.  On top of that, she has been fighting a sickness for the past week that includes upper respiratory issues and some stomach distress.  As Megan said to me this week, “Dad…I just don’t feel like I can catch a break.”  Hopefully, she receives her well-deserved break very soon.

Megan has been feeling so miserable that it’s been very difficult for her to leave the house.  However, she did manage to make it to Kenzi’s first basketball game at Plainfield North on Tuesday.  It seems like volleyball season just ended and now Kenzi is right into basketball.  Speaking of volleyball season, we were very excited when today’s Kankakee Journal newspaper came out and saw that Kenzi was named to their All-Area Volleyball Team.  Here is a picture of her in the newspaper.  It was nice to see her receive such recognition because she has worked so hard for so many years at her favorite sport.

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On Thursday night, Kenzi’s team started play in the Beecher Fall Classic basketball tournament.  She played on Thursday, Friday and two games on Saturday.  On Thursday, Megan was able to make it and was excited when Makenna Emerson made the trip from college to watch Kenzi play.  Here is a picture of Megan and Makenna sitting in the bleachers at Thursday’s game.

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This weekend, I was in Chicago for the State School Board Convention.  Since Beecher is less than an hour from Chicago, I drove back to watch Kenzi’s games.  The plan all week was that following Kenzi’s Saturday afternoon game, Megan was going to come back to Chicago with me.  Since Kenzi was having eight of her basketball friends for a sleep-over, it worked out perfectly.  Saturday night was the annual Christmas parade in Chicago, and since my hotel was right on Michigan Avenue, Megan and I planned to watch the parade and go out for a nice dinner.  On Sunday, we were going to her favorite breakfast place, “The West Egg”, and then she was meeting her friend Emma to watch the musical “Hamilton”.  Megan has been looking forward to this weekend for the past two weeks.  Unfortunately, when she woke up Saturday morning she was so dizzy that she could barely get out of bed.  About two hours later, she called me in tears to let me know that she just couldn’t do it.  She was so disappointed, as was I.  It seems that she can’t go a single day without somehow being rudely reminded that she had stage 4 cancer.  It’s becoming exhausting for her.

No matter how difficult things get, Megan’s pets continue to bring out that infectious smile🙂

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Another outlet for Megan has always been music and theater.  Although Megan is not involved right now, Kenzi is preparing for the annual Madrigal Holiday Concert and Play.  Three nights per week, Kenzi finishes basketball practice at 5:15 p.m. and then heads back to the high school for Madrigal rehearsal from 6-9:00 p.m.  It keeps her busy, but she loves it.  Megan has stayed involved by helping Kenzi rehearse her lines.  Here is a picture of Megan reading lines with Kenzi.

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Times are tough for Megan right now, but I know she will fight her way through this latest obstacle.  Throughout the past two years, she has shown her tenacity and resolve time and time again.  Somehow, she always manages to come out on top.  This latest obstacle is tough because it is unknown and unlike her chemo treatments, she doesn’t have an end date when the race will be won.  Instead, she will just have to keep running until the finish line comes into view.  As I said during Megan’s chemotherapy treatment, you have to focus on winning one day at a time; and when that doesn’t work, you try to win one hour at a time…and sometimes, it’s even one minute at a time to find that elusive win.  Such is the harsh reality that accompanies cancer.

Until next week…

Searching for Answers

It has now been 677 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  She made tremendous progress in the months following the completion of her 54 week cancer treatment protocol.  She quickly gained back some strength and stamina, went back to school full time, and drastically improved her chemo-induced foot drop.  Her quick progress impressed everyone around her, including her medical team.  Unfortunately, the past month has not been so easy for Megan.  We have learned that even when cancer is beaten, it doesn’t want to completely let go of its victim.

About a month ago, Megan was in school and suffered a dizzy spell that resulted in her feeling like she was going to pass out.  Since that time, she has been experiencing frequent dizzy spells that are starting to seriously impact her quality of life.  Along with her dizzy spells come hot flashes, headaches, and frequent stomach irritation.  Since that initial episode, Megan has gradually become more and more panicked about being in public places because she is worried she is going to have another dizzy spell and potentially pass out.  Over the last two weeks, her fear has morphed into bull blown panic attacks that cause her to become short of breath and severely distressed.  The panic attacks have only intensified her fear of being in public without an exit strategy, which has even started to make school a challenge for her.  She has worked so hard and come so far that it’s actually heartbreaking to watch her struggle right now.

We have spoken with her oncologists, and they have been searching for answers.  To start, they prescribed Megan with a low dose anti-anxiety medication, which has not seemed to help much.  The next step was to send her to a pediatric cardiologist at Lurie’s in Chicago to see if the chemo-induced damage to her heart was causing the dizziness.  To date, we do not have a firm answer as Megan is currently in the process of collecting data via a portable cardiac event recorder.  Whenever she feels severely dizzy or panicked, she uses the cardiac recorder and then we send in the results to her doctor.  In a couple more weeks, there should be enough data for the doctor to determine if her heart is playing a role.  On Friday, we received a call from Dr. Salvi that gave us some hope.  In last week’s blood test results, he noticed that Megan had some very low hormone levels, which is a common side effect of intense chemotherapy.  As a precaution, Megan saw an endocrinologist soon after she completed her treatment, and although some readings were low, the doctor was encouraged because her hormone levels were improving.  However, Dr. Salvi saw that her levels had dropped dramatically once again, which he believes could likely be the cause of her dizziness and hot flashes.  He quickly got her an appointment tomorrow (Monday) to see her endocrinologist.  Hopefully, we can get some answers because Megan is getting so frustrated with her current situation.  As I stated earlier, sometimes it seems like cancer will just never give her a break.  I hate cancer so much and it is so unfair that an innocent teenage girl should have her life turned upside down by this vicious, cruel disease.  We try so hard to take things day by day and stay as positive as possible, but sometimes it is hard not to harbor anger and resentment.

Megan continues to use baking as one of her primary tools for stress relief.  This week, she heard Kenzi say that she wanted a pie with raspberries in it.  Megan found a recipe for raspberry cream pie, and on Wednesday night, when Kenzi got home from basketball practice, Megan surprised her with a fresh pie.  Here are a couple pictures of her latest baking project.

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Last week, I wrote that Kenzi was having her senior pictures taken.  Although we do not have the final pictures yet, the photographer did release a sneak preview for us.  I know I am more than a little biased, but I think she looks gorgeous.  Here are a few of the pictures we received.

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Kenzi has been a member of the CCHS Madrigal singers throughout her high school career.  On Friday night, they sang at an outdoor event in Morris and sounded beautiful.  Here is a picture of Kenzi in action.

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The pace picks up significantly around our house this week as Kenzi starts her final high school basketball season.  They play on Tuesday, Thursday, Friday and two games on Saturday, so the season really starts with a bang.  Megan has her doctor appointment on Monday, and I have the School Board Convention in Chicago this weekend, so we all see each other coming and going this week.

When the girls do get a chance to relax, their pets still provide a source of comfort to both of them.

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Ophie let Megan know it was time to wake up this morning.
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Kenzi relaxes with Ophie before she heads off to school.
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Buddy decides to watch some TV with Megan.

Megan will continue to battle as she works to regain the “normal” life that cancer so  cruelly tried to take from her.  Hopefully, Megan gets some answers this week…not only to remedy her current physical condition, but also to provide her with some mental peace of mind.  No one deserves some peace and tranquility more than her.  Until next week…

Go Cubs Go!!!

It has now been 670 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  After the scare we had a couple weeks ago, this week turned out to be much less stressful for Megan and our family.  In fact, given that Megan only had one medical appointment and Kenzi’s volleyball season was over, it was kind of a strangely quiet week.  Anytime cancer is not the focus of our week, we consider it to be a blessing.  We all kept plenty busy, but it was a calmer kind of busy…if that makes any sense at all :)  Of course, the highlight of the week was the Chicago Cubs breaking their 108 year drought and finally winning the World Series!!!  GO CUBS!!! #FlytheW

On Wednesday, Megan had to go to CDH to get some blood work done.  Last week, she had an appointment with her cardiologist, who ordered some different blood work for her.  She had a very long day at that appointment, so by the time it was time to get blood work done, Megan much preferred that we go to Nurse Jenny at CDH so the blood could be taken via her port.  Megan believes that no one can access her port as well as Nurse Jenny :)  Plus, going to CDH always gives Megan a sense of relief because she can ask questions and have the medical staff check on any concerns she may have.  Megan has still been fighting with some dizzy spells that cause her to become very anxious.  When the dizziness starts, her mind plays tricks on her and she starts to feel short of breath and very panicked…all classic signs of a panic attack.  I know her concern is that somehow the cancer has returned and is causing the dizziness and shortness of breath, but Dr. Salvi has assured her that is not the case.  We are so thankful Megan beat down cancer, but being a cancer survivor is definitely a mental challenge.  However, just as she did in beating cancer, Megan will find a way to win this mental battle as well.

Megan’s appointment for blood work at CDH was at 8:30 a.m., so right after she was anxious to get back to school so she didn’t fall behind.  After cancer forced her out of school for a year and a half, returning to school as a full time student has been challenging for Megan.  Her sophomore year is really her first year of high school, so even though she is catching up and taking many classes with her peers, she is still almost like a freshman.  She has been working very hard to keep her grades up, which at times can be a challenge because she has missed six or seven days due to doctor appointments.  Luckily, she still has her tutor, Ms. Erb, who has really played a vital role in keeping Megan on pace academically.  We are proud of how hard she is working in all of her classes.

The highlight of our week was on Wednesday when the Cubs won an incredible game 7 to claim their first World Series title in 108 years.  If you saw the game, you know it was filled with emotional highs and lows as the Cubs jumped out to a lead only to give it up late in the game.  Then there was a short rain delay and the Cubs came out and won it in the 10th inning.  I was so happy for Cubs fans like my dad who have been waiting 71 years for a Cubs World Championship.  However, the highlight of the night had to be watching the entire game with Megan.  She stayed up for every single pitch and celebrated with me when Kris Bryant fielded the final ground ball to secure the victory.  It was one of those daddy-daughter moments I will never forget.

Another landmark moment took place today as Kenzi got her senior pictures taken.  I was very proud of her as she found a photographer she wanted to use and booked the entire sitting herself.  The photographer actually came to our house at 5:45 a.m. this morning to do Kenzi’s hair and make-up.  She looked absolutely gorgeous!!!  Kenzi and Deb followed the photographer to Morris for some pictures and then they went to Ottawa.  I cannot wait to see her pictures later this week.  I still find it hard to believe our little girl is all of the sudden a senior in high school!!!  As I have said many times, don’t take a single minute with your kids for granted because you just never know what life can throw at you.  Here is a picture I took of Kenzi this morning just before she left for her photo shoot.

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On Friday night, Kenzi, her boyfriend Nick, and I all went to watch Wilmington High School in their playoff football game.  Prior to the game, Deb and Megan joined us for dinner at Kenzi’s favorite restaurant, New China, in Wilmington.  We all had a great time together.  Here is a picture of Megan and Kenzi getting ready to enjoy their sushi.

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One of Megan’s primary stress relievers continues to be baking.  This week, she whipped up some killer frosted brownies, which were gone from our house in a day :)  Today, we had our good friends, Jerry and Kay Cougill, over for supper.  Since it was so nice outside, I decided to start up the smoker for some sausages and ribs.  Kenzi helped me make some side dishes while Megan made a chocolate-peanut butter pie.  Here are a couple pictures of Megan in full baking mode this week.

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Mixing up the brownies
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Cutting Reese’s Peanut Butter Cups to top her pie.
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The finished product…and it was awesome!

During Megan’s treatment, she connected with her now good friend Kasey Harvey from San Diego.  Kasey recently had a scare as her scan showed something that concerned her oncologist.  Anytime Kasey gets any bad news, it really impacts Megan.  Our entire family was overjoyed when Kasey’s father contacted us to let us know that her new scans showed No Evidence of Disease (NED)!!!  We knew Kasey was far too tough for cancer, but it was still a relief to know she was okay.  Way to go Kasey!!!

Another long-distance friend Megan met via social media is Mia Miyamoto, who resides in Kansas City.  Mia is 16 years old and also suffered from ARMS.  She and Megan text each other often as they both understand the challenges of fighting this awful disease.  Megan found out this week that Mia’s cancer has returned and she recently underwent surgery to remove the tumors that have reappeared.  That news really shook Megan up as all of these girls (Megan, Kasey and Mia) share a kindred spirit.  Our thoughts are with Mia and her family.  Once again, we know Mia is way too tough for cancer  https://www.facebook.com/MiracleforMia/

Until next week…

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Nothing like a cat on the counter🙂

Dodging Yet Another Scare

It has now been 663 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  In last week’s post, I conveyed that Megan had an appointment last Monday morning at the CDH Clinic for a check-up with her oncologist.  I didn’t want to cause any undue alarm, but that was an unscheduled visit.  Last Saturday night, Megan felt a small lump on her left underarm, which of course, sent her anxiety through the roof.  She had also not been feeling good for the past few days, and with the dizzy spells she had been having, we were all more than a little concerned.  We called Dr. Hayani on Sunday morning and he said to bring her into the clinic first thing on Monday morning.  Needless to say, it was a very stressful weekend for Megan and our family.  As I have said many times, cancer’s grasp is vicious, so even after defeating it, somehow it still manages to make its presence known.  I cannot even begin to imagine the mental challenge that Megan faces on a daily basis.  She tried to put on a brave face, but she was beside herself with fear.  On Sunday, through her tears, she probably told me three different times, “Dad…I don’t know if I can do it again.”  Words can’t express how hard it is to hear those words come from your child’s mouth.

On Monday morning, we left at 7:00 a.m. to make sure we were the first ones at the CDH clinic when it opened at 8:30 a.m.  It was a pretty quiet drive all the way there as Megan was pretty concerned about what she might hear from the doctor.  I have to admit, I was scared to death as well.  When we got there, Nurse Kathy stopped to see us in the waiting room.  She is the Nurse Practitioner for Dr. Hayani and Dr. Salvi, and she is the absolute best.  From the first day of Megan’s treatment, she has been an ever-present calming factor for Megan and our family.  Soon after our visit with Kathy, Megan got called back to see Dr. Salvi.  Megan explained what she was feeling, and then Dr. Salvi started his examination.  He soon called Nurse Kathy in to help perform a more intimate check on Megan’s body while I waited outside the door.  I swear it seemed like an eternity before I was called back into the examination room.  The longer I had to wait outside the room, the more worried I became.  When I got back in the room, Dr. Salvi said the news we had all been hoping for.  He said that what Megan was feeling was not cancerous!!!  You could immediately see the relief on Megan’s face.  He told her to relax and that she didn’t have to come back for a month.  Nurse Kathy gave Megan a big hug, and then Nurse Jenny came in to give her a congratulatory hug.  Everyone at the CDH clinic is just wonderful and Megan loves them all.

As we walked out the door of the hospital, Megan said she was starving, which I was as well.  I think we were both so nervous in the morning that we had forgotten how hungry we were.  Megan decided she wanted to celebrate the good news by going to IHOP for some pumpkin pancakes.  Here she is enjoying a pumpkin latte before her breakfast came.  As you can see, she was feeling much better by this point of the morning.  Once again, Megan was able to avoid cancer’s mighty grasp.

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On Wednesday, Megan had a very busy day of medical appointments.  She had to leave the house at 6:30 a.m. to get to Marionjoy for her 8:00 a.m. casting appointment.  Although her progress has been slow, Megan’s feet are getting much closer to “normal” as her right foot can stretch to a positive 1.0 and her left foot is now at a positive 0.8.  Considering she started at a negative 3.0, she has made tremendous strides.  In fact, if you didn’t know better, you would have to look very closely to notice any abnormality in her walking stride.  After her casting appointment, she stayed at Marionjoy for her 9:00 a.m. appointment with her rehabilitation doctor.  Dr. Pavone was also pleased with Megan’s progress.  She is going to have a new insert made for Megan’s shoes, which should continue to help as she works to combat her chemo-induced foot drop.

Immediately after we finished her appointments at Marionjoy, we headed downtown Chicago to see a pediatric cardiologist at Luries Children’s Hospital.  Her appointment was at 11:30 a.m. and started with an EKG and then an hour long echocardiogram.  After that, Megan waited to see Dr. Gambetta.  During Megan’s 54 weeks of chemotherapy, one of the chemo drugs she had was Doxorubicin, which can cause damage to the heart.  Dr. Salvi wanted to make sure that Megan’s recent dizzy spells were not related to any heart damage.  Dr. Gambetta confirmed that Megan’s heart had incurred some damage, but she thought it would repair itself in time.  In the meantime, Megan will take some medication to help with the healing of her heart.  She will also use a portable heart monitor to see what is happening to her heart during her dizzy spells.  In two months, Megan will go back to Luries to follow up and see if her heart is making progress.  Needless to say, it was a very long appointment as we didn’t get out of there until about 4:00 p.m.  Then with rain and rush hour traffic, we faced a two hour and 45 minute drive home.  Talk about an exhausting day!!!

On Tuesday, Kenzi and her Lady Coaler volleyball team won their first game of the regional by beating Rich Central High School.  On Thursday, they played for the regional championship against an excellent team from Providence Catholic.  Unfortunately, the girls fought hard but came up a little short, which ended their season.  We could not have been more proud of the season and career Kenzi has had as a volleyball player at Coal City High School.  She has been a three year varsity starter, and was an all-conference selection her junior year.  I know she is hoping for a repeat when the all-conference team comes out this year.  The Lady Coalers had a great season finishing with 24 wins against 12 losses.  It was bittersweet watching her play her final game as she has decided not to pursue opportunities to play volleyball in college.  Kenzi doesn’t get any time to rest as she has her first basketball practice after school on Monday🙂

Megan is a big Cubs fan, so she has enjoyed watching the Cubs throughout the playoffs and now in the World Series.  Although the Cubs have their backs against the wall, Megan is still keeping the faith.  Makenna Emerson stopped over to watch the game with our family tonight, and Megan decided to break out the rally stickers.  Here is a picture of Megan and Makenna cheering after Kris Bryant hit a home run tonight🙂

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Compared to the stress of last weekend, this weekend our family was able to enjoy ourselves.  We went shopping and then had lunch at Red Lobster.  Here is a picture of all of us at lunch on Saturday.

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On Sunday, Megan decided to whip up some mini-cupcakes to share with her English class at school tomorrow.  She decided to make Halloween-themed cupcakes with orange frosting.  Here she is taking a batch out of the oven and then frosting them.

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Until next week…

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Breaking Cancer’s Vicious Grasp

It has now been 656 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  Since she was declared to be officially in remission on January 25, 2016, Megan has been making tremendous progress.  Her foot drop is getting to the point that some people don’t even notice she still has a little hitch in her step.  She is gaining more and more confidence at school as she is choosing to work more independently with each passing week.  However, even though cancer’s grip on Megan is significantly weakened, we have learned that completely breaking free of cancer’s grasp is a Herculean task.  Megan is constantly dealing with the anxiety and uncertainty that comes with being a cancer survivor.  What would be a normal ache or pain for the rest of us results in intense fear for Megan as she is always concerned that the evil beast has returned to haunt her.  Every sore joint; every headache; every dizzy spell; and especially every bump sets Megan’s head spinning as it is so hard for her not to think the worst.  Obviously, Deb and I become concerned at times as well, but fortunately, everything to date has been a false alarm.  When I think of the mental battle Megan is forced to wage every single day, I become even more in awe of her strength, toughness and determination.  She really is an amazing young lady.

Monday was a big day for us as it was Senior Night for Kenzi’s high school volleyball team.  Kenzi has been a three year varsity starter, so she has had a very successful volleyball career as a Lady Coaler.  It felt a little strange knowing that Monday’s game was the last time we would see her playing volleyball on her home floor.  The girls played well as they gained their 22nd victory of the season.  We were so pleased that so many friends and family were able to make it to the game.  We also had a little party at our house afterwards to recognize Kenzi’s accomplishments.  It was so much fun.  Here are a few pictures of the evening.

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Kenzi goes up for block.
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Ready to serve
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Family photo
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Grandpa and Grandma Bugg
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Grandpa and Grandma Coope
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Grandma Irene
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Uncle Todd and Gina
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Cousin Emily and her husband Matt
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Cousin Danny
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Kenzi with Head Coach Pam McMurtrey

On Wednesday, the Lady Coalers had their final regular season game at Sandwich and won a thriller 27-25 in the 3rd game.  That win gave them 23 for the season as they head into regional action this Tuesday.  All of the girls have had such a good season and it’s been a lot of fun watching them.  I still can’t believe Kenzi and her friends are seniors😦

Megan and I have had so much fun watching the Chicago Cubs in the playoffs.  Unless it’s a school night, she always stays up to watch the entire game with me, and if it is a school night, she usually lobbies to let her stay up longer than I should :)  Last night was amazing as we watched the Cubs punch their ticket to the World Series for the first time in 71 years.  Megan was extra excited that her favorite player, Anthony Rizzo, hit a home run.  He is a fellow cancer survivor, and when Megan was ill, his foundation sent her an autographed picture and some Cubs memorabilia.  He seems like such a good guy.  My dad first remembers following the Cubs in 1946, so he has never seen a World Series.  After they won last night, he sent me a text that read, “Finally!!!  After waiting 70 years!!!”  I was so happy for him.  Megan is hoping the Cubs can find four more wins and bring home the World Series championship!!!

On Saturday morning, our family drove over to Reed-Custer High School to watch our neighbor, Madison Emerson, play in the conference freshmen tournament.  Megan and Kenzi knew that Makenna had come back from college to watch her sister play, so they were anxious to see her as well.  Even though the Emersons live right next door, everyone is so busy that our families don’t get together often.  It was nice for all eight of us to hang out for a while on Saturday morning.  We will always be so grateful for everything the Emersons did for Megan and our family while she was battling cancer.  Here is a selfie that Kenzi took of her, Makenna and Megan at the game.

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This weekend, Megan really had the itch to bake.  On Saturday, she made some incredible red velvet cupcakes with homemade cream cheese frosting.  They were amazing!!!  I had better remember to take one to my co-worker, Tammy Elledge, or I will be in big trouble🙂

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Then today, Megan decided to make some apple dumplings that she had learned how to make in her foods class at school.  She also made a vanilla sauce to go with them.  They were incredible!!!  All of that girl’s desserts are making it harder and harder for me to stay in shape!!!🙂

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This is a very big week for Megan has she had a multitude of medical appointments.  On Monday morning, she has an appointment at CDH to see her oncologist.  He is going to check her over just to make sure she is doing okay.  He gives her a very thorough physical exam, and although it is agonizing waiting for him to give the all clear, Megan always feels much better knowing everything is still okay.  On Wednesday, she goes to Marionjoy for another casting appointment and then immediately after that she sees Dr. Pavone, who is her rehabilitation doctor.  If her foot drop is still progressing, then she should be closing in on the end of her Marionjoy appointments.  Right after that, we have to drive to Lurie’s in Chicago so Megan can see her pediatric cardiologist.  Dr. Salvi wants to make sure that her dizzy spells are not related to the minor heart damage she received as a result of intense chemotherapy.  After all of that, Megan should be ready for a restful long weekend as Coal City Schools do not have school this Friday.

Of course, no post is complete without a couple of pet pictures.

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Belushi is reading in bed with Megan🙂
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Ophie loves to help Kenzi eat her morning cereal🙂
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Belushi decided to watch the Cubs game with Megan last night. Go Cubs!!!

Until next week…