Breaking the Grasp

Childhood cancer’s grip is incredibly powerful.  For the past five years, Megan has been fighting so hard to break free from cancer’s evil grip.  There have been times when Megan has come so close to realizing freedom only to have cancer tighten its grip even further.  It’s almost as if cancer toys with its victims to give them a false sense of security before rudely reminding them of its omnipresence.  It seems like fighting cancer is a cycle of diagnosis, treatment, and remission that repeats itself over and over again.  Cancer’s hope is that eventually it’s victims will finally tire of the battle and succumb to cancer’s vicious grasp.  Even though Megan has been through this arduous cycle four different times…somehow, not only has she maintained her desire to win, but with each relapse, her determination has grown even stronger.  Sooner or later, Megan’s will to win will allow her to break free from cancer’s grasp once and for all.  In the meantime, with a fierce resolve, she continues to valiantly battle back from whatever adversity is thrown at her…including her most recent setback.

Two weeks ago today, Megan had two surgeries to remove gallstones from her bile duct and to remove her gallbladder.  We happened to be on vacation in Los Angeles at the time until Megan’s trip was rudely interrupted with severe abdominal pain.  It took four days of tests and excruciating pain before the medical team at Cedar-Sinai Hospital determined that surgery was required.  Her hospital stay turned a four day trip to LA into an 11 day excursion…six of which were spent in the hospital.  Since she got home, she has been getting better day by day…with the help of her furry friends.

Of course, she is not recovering as fast as she thinks she should, but we keep reminding her that her body was already ravaged from finishing chemotherapy only two months ago, and she just had two surgical procedures.  It is going to take some time for her to recover, but she is getting there little by little.  This latest setback was just another example of that roller coaster ride that defines fighting childhood cancer.  Just two months ago we were on a high because Megan was declared in remission and would no longer have to undergo chemotherapy.  Her most recent medical issues brought us right back down again, but we are in the process of following Megan’s lead and fighting our way back.  In this battle, you can never let the tough times outshine all of those beautiful moments that continually present themselves each and every day.

On Thursday, Megan went to the CDH clinic to see Dr. Hayani for her monthly blood work and physical exam.  Thankfully, her blood work showed no indicators of cancer, and after Dr. Hayani’s thorough physical exam, he gave her the all clear for another month!!!  She does not have to go back until her next set of scans, which are on February 17 and 18.  Megan is always a little stressed going for her monthly exam, but the kindness of all of the awesome medical professionals there make her feel so much better.  It really is a very special place for all the brave kids fighting childhood cancer.

While we were at the clinic, Dr. Malandra (her GI doctor) stopped over to see her.  He also ran some blood work which showed some signs of pancreatitis and some elevated liver enzymes, but he said it was not unexpected given the trauma she experienced and her two surgical procedures.  She is going to repeat the blood tests in one week, and he fully expects her numbers to trend towards the normal range.  In the meantime, Megan will continue to experience some discomfort in her abdomen, but at least it is manageable.

Since Megan has been feeling better with each passing day, she was able to get out of the house this week.  She went to work at Broadway Dance Studio for a couple hours on Wednesday and Thursday night, which always brightens her spirits.  On Saturday, she and her mom went to a cat shelter to bring supplies and a monetary donation.  As all “Team Megan” members know, Megan is a huge animal lover, and she has a special soft spot for cats.  The “Just Animals Shelter” located at 505 Depot Street in Mazon, Illinois does a tremendous service in taking care of cats and finding adoptive homes for them.  Megan loves to support the shelter, and she really enjoys spending time with the roughly 40 cats they have at any one time.  She said that last year the shelter found homes for almost 500 cats, which is really incredible!  If you live anywhere close to Mazon and you are looking for a loving pet, you should stop by and check out the wonderful work they do.  Tell them Megan sent you 🙂

The fun continued for us on Sunday as we drove to Rockford to meet Kenzi for lunch and some shopping.  Rockford is only a little over an hour drive for Kenzi and it’s less than two hours for us, so meeting at the CherryVale Mall is perfect for us.  Kenzi has only been back at school for a week, but we already miss her, so it was great to have an opportunity to get the girls together before Kenzi starts classes this coming Tuesday.  It was a little easier saying goodbye to Kenzi knowing she would be home in a couple weeks for our annual Super Bowl party 🙂

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There is no doubt that cancer’s grasp is both evil and incredibly strong.  In this battle, you must be able to navigate the tough times without becoming distracted or discouraged and taking your eye off the ultimate prize.  Words cannot express how hard it must be to stay motivated when cancer just keeps coming at you with a relentless barrage of mental and physical blows.  I really have no idea how Megan does it, but she just keeps moving forward day after day after day…all the while somehow keeping that infectious smile on her face.  The world would be a much better place if we all shared Megan’s outlook on life.  Until next week…

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Finally…Back to the Comforts of Home

Our family vacation didn’t quite turn out the way we had planned.  If you read last week’s post, you know that our family traveled to Los Angeles to watch Kenzi’s Wisconsin Badgers participate in the Rose Bowl game.  We got to LA late on December 30 and had a great time until after the Rose Bowl game on January 1 when at about midnight, Megan started to complain of abdominal pain.  She has been having similar pains for the past three years, and has had a multitude of tests, including a hidascan about two months ago, but nothing was conclusive.  In the past, she has had some intense pain that starts in her upper abdominal area and radiates to her back, but it usually goes away within a couple hours.  Given her past history, we fully expected her pain to subside, but at 9:00 a.m., she was still struggling and the pain was intensifying.  Over the past five years, Megan has developed a very high pain tolerance, so when she said we needed to take her to the emergency room, we didn’t hesitate.  Our LA friends recommended we take her to Cedar-Sinai Hospital, which we did at 9:30 a.m. on January 2.  Over the next four days, Megan went through excruciating pain as the doctors tried to figure out what was going on with her.  Finally, they determined she had gallstones that had infected her gallbladder as well as stones that had made their way into her bile duct causing the pain to become even more severe.  On Sunday, January 5, Megan underwent two different surgeries; the first to retrieve the stones from her bile duct; the second to remove her gallbladder.  This week became a matter of recovery and her longing to get back to the comforts of home.

Since we were scheduled to fly out on Friday, January 3 Megan was really anxious to get home.  However, after two surgeries on Sunday, there was no way she was in any condition to fly home anytime soon.  Monday was pretty rough because although the intense pain was now gone, she was now dealing with the surgical pain.  Her doctors still had her on some heavy pain medication and anti-nausea medicine, which caused her to be in and out all day on Monday.  By Monday night, she started to show signs of bouncing back, and her surgical doctors said that if she continued to improve that quickly, she could be released from the hospital on Tuesday night.  However, they also said she could not fly home until Thursday at the earliest, which was extremely disappointing to Megan.

On Tuesday, Megan had visitors that really brightened her day.  When Megan was originally diagnosed five years ago, a very kind and generous actor who was originally from Chicago reached out to her.  I could never say enough about the kindness that Jonathan Sadowski and his finance, Melissa, have shown to Megan and our family over the past five years.  He is the one we called when Megan needed to be hospitalized, and through those four days prior to her surgery, he served as a personal chauffeur to our family members as some of us traveled to and from the hospital.  When Kenzi was alone where we were staying, Melissa called her and took her on a hike.  Jonathan stopped by the hospital to take Kenzi and I out for lunch.  Most importantly, he came to the hospital three different times to comfort Megan and Deb.  Every time Megan saw him, a smile came to her face and she was able to become distracted from the pain for little while.  It was so sweet watching Jonathon rub her back, hold her hand, and make her smile.  On one of his visits, he brought Megan a stuffed animal that she proudly showed off after her surgeries.  Jonathan Sadowski is one in a million, and I don’t know how we could ever thank him for all he has done for us.  Before Megan and Deb were finally able to fly out on Thursday, Jonathan and Melissa took Megan and Deb out for lunch.  As you can tell by the smile on Megan’s face, she was feeling much better by this point.

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Since Megan was starting to feel better, she was finally released from the hospital on Tuesday evening.  I had a school board meeting on Wednesday night, so after Megan went to sleep on Tuesday night, I took an overnight red eye flight back to Chicago.  We had flown Kenzi home prior to that because it was quite traumatic watching her sister in so much pain.  Besides, we needed someone to come home and take care of the pets.  When Megan was in the hospital, it really helped when Kenzi would Facetime her and show her the pets.  Those were some of the few times that Megan was actually able to crack a smile 🙂  Finally, Megan was released to fly home on Thursday afternoon.  Megan was nervous about getting on a plane with her pain and nausea, but she was so anxious to get home.  It didn’t help her anxiety that their flight was delayed for 45 minutes 😦

Kenzi and I got to the airport at 6:00 p.m. to pick Megan and Deb up from the airport.  Kenzi wanted to go in to the baggage area to meet Megan, so I dropped her off and circled in the van until they arrived.  It was so good to see them!!!  Unfortunately, the ride home was rough for Megan as she threw up on the way home, but she has done that so many times in the past, it was no big deal for her.  We pulled off at a gas station where she washed out her mouth and got right back in the car because she wanted to get home as soon as possible.  Obviously, when she walked in the door, her first order of business was to find her Boo Boo Kitty.  It didn’t take long for the two of them to reconnect 🙂

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And of course, when Megan went to bed soon after, there was Boo Boo again.

The next night, Belushi wanted in on the action.

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Kenzi was pretty happy when Megan shared Boo Boo with her 🙂

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Since arriving back home on Thursday night, Megan has steadily improved.  She is gaining strength, and her pain is subsiding a little more each day.  Although there is nothing she could have done about it, the timing of her hospital stay and surgery was not the best, because unfortunately, Kenzi has to go back to college on Monday 😦  Usually, when Kenzi is home, the girls make Starbucks runs, go shopping, out for lunch, etc., but this time, Kenzi has been hanging with Megan on the couch as they watch Netflix shows.  It’s not as much fun as they usually have, but at least they have been able to spend the weekend together.

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Kenzi’s 21st birthday is on January 28 (hard to believe!!!).  Since she won’t be home on her birthday, prior to Megan’s ordeal, we planned to go our for an early birthday dinner today.  We left it up to Megan, and she still wanted to go out and celebrate Kenzi’s early birthday dinner today…even though she still wasn’t feeling all that great.  We had a great time celebrating Kenzi’s early 21st birthday.  We continue to be so proud of everything she has accomplished; even in the face of being constantly worried about her sister.  Many people forget the toll that childhood cancer plays on siblings…it is a very real anxiety and pain that they feel, and in spite of it all, Kenzi is still thriving.  Although we will miss her while she is away for the second semester of her junior year, we know she is in the right place and doing the right thing.  She and Megan will continue to love and support each other from afar.

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As a parent, it was so difficult to watch Megan in so much pain, but we are very hopeful that this surgery might actually relieve the frequent abdominal pain issues she has experienced over the past three years.  It’s also very good to see her starting to feel better.  However, as usual, Megan’s reprieve is short-lived as she has her monthly physical exam and blood work with her oncologist on Thursday morning.  Although we do not expect any cancer-related issues, there is always that nagging fear in the back of our minds whenever Megan has a medical appointment.  Let’s hope that she finally gets a well-deserved break from all of this!!!  In the meantime, there really is no place like home!!!  Until next week…

 

Hollywood and the Hospital

Remember how I said fighting childhood cancer was like riding the biggest baddest roller coaster ever?  Well…this past week we experienced that roller coaster ride to the Nth degree.

Our family had big plans over winter break.  Kenzi’s Wisconsin Badgers were playing in the Rose Bowl, and she was able to secure four tickets for our family.  So on Monday, December 30th our family flew out of O’Hare to head to sunny Los Angeles…which just so happens to be Megan’s favorite place to visit.  We were all so excited for our trip, and since Kenzi is getting older, we treasure the times we can travel together as a family.  Here are some pictures of the happy times we had on the first few days of our vacation.

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Here are the girls at the house we stayed at in LA. They were both excited for our upcoming adventures.
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Megan was able to meet up with her good friend, and fellow teenage cancer warrior, Sophia. It was so good to see the two of them healthy and together.

On New Year’s Eve, we went to the Los Angeles Zoo Holiday Light show.  It was so much fun!

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We also found time to make a quick shopping trip to The Grove.

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On the morning of New Year’s Day, we made drive to Megan’s favorite donut place in LA…DK Donuts in Santa Monica.  As usual, it didn’t disappoint.

Then it was off to watch the Wisconsin Badgers in the Rose Bowl.  Although they lost a heart breaker 28-27, we still had so much fun.

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We were all exhausted after the Rose Bowl game, so we headed back to where we were staying to get some sleep.  That night, Megan called us into her bedroom at 12:30 a.m. to let us know that she had some abdominal pain.  This is nothing new for Megan as she has dealt with the same upper abdominal pain for the past three years.  Usually it is fairly intense for about three hours and then she is okay.  However, this time it didn’t go away.  Finally, at about 9:00 a.m. she was in so much pain that we took her to the emergency room at Cedar-Sinai Hospital in LA.  By the time she was in the emergency room for a couple hours, she was in agony and not even morphine helped with the pain.

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She finally got up to a regular room and they ran a CT scan which came back normal.  She went under anesthesia the next day for an endoscopy, which also came back normal.  Then they completed an ultrasound which showed the stones in her gallbladder.  They finally decided to take her gallbladder out, but in the meantime, the pain only intensified.  Further blood tests showed that she most likely had stones that had moved from her gallbladder to her bile duct, which would necessitate a second surgery.  After consulting with the surgical team, they decided to do the bile duct surgery first followed by the gallbladder removal surgery, which both finally happened today.  In between her initial admittance to the emergency room and her surgery today, she went through nearly four days of the most intense pain I have ever seen.  It seemed like no amount of pain medication took the edge off.  There were so many times that she would cry out because she was in so much pain, which for Megan means she was really hurting, because over the past five years she has developed quite the high tolerance for pain.  In her own words, she has never experienced pain like that before, and as a parent, it was so hard to watch her struggling…especially considering everything else she has been through for the past five years.

Finally, she completed both surgeries today and mercifully she is out of that severe pain.  Now she just has to recover from the surgical procedures.  On the bright side, both doctors said they saw no signs of cancer in her abdominal area, which is something Megan was really worried about.

Here she is finally taking her first bite of food in three days.

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It was a very rough last few days, and today was extremely taxing, but hopefully there is now a light at the end of the tunnel.  We were supposed to fly home on Friday, but obviously that didn’t happen.  Megan is so anxious to get home, so hopefully we are able to get her home by Wednesday.  All things considered, it could have been worse.

Sometimes that roller coaster ride is completely overwhelming.  The good news is, we always seem to be able to follow Megan’s lead and make it off the ride in good enough shape to buckle up again and see what tomorrow brings.  Hopefully Megan can get to the comforts of home and back to her Boo Boo Kitty soon.  Here is one last look at the highs and lows of this journey.  Until next week…

 

 

It’s Been Five Years

It was Christmas Day, 2014 when we first discovered the bump on Megan’s left forearm.  At the time, little did we know the trials and tribulations that discovery would lead to.  The following day we went to see Megan’s pediatrician, Dr. Spomenka Jercinovic, who immediate knew the grave situation that faced our beautiful 13-year-old girl.  She didn’t even let us go home before sending us immediately to see Dr. Salvi and Central DuPage Hospital.  To this day, I still credit Dr. Jercinovic’s quick and decisive action for saving Megan’s life.  After a series of grueling scans including a five hour MRI (which is the cause of Megan’s current claustrophobia issues), the worst was confirmed.  Megan was officially diagnosed with Stage 4 Alveolar Rhabdomyosarcoma cancer.  We were obviously devastated to not only hear that news, but to also learn that Megan would be undergoing 54 weeks of intense chemotherapy.  Virtually every minute of those few days are etched in my mind forever.

Five years later, as I reflect on those traumatic few days, there is one moment that stands out more than any other…and it is the moment that set the tone for how Megan would lead our family through her five year battle.  Deb and I were standing by her bedside as an MRI technician was getting ready to transport her from her hospital room to yet another series of MRI scans.  Through tears, Deb and I were holding her hands and I will never forget the words Megan boldly and forcefully told us.  She said,

Please don’t say ‘I’m sorry”, because when you say that it makes me think you don’t believe I will get better, and I’m going to get better.

It was at that exact moment when I realized that our painfully shy 13-year-old 8th grader actually had a steely determination and grit that none of us knew existed.  It was those positive and hopeful words that set the stage for how Megan would attack her personal battle with this vicious and evil disease.  It was also those wise words that allowed our family to move from despair to hope.  It was a singular moment in time, but that moment’s importance has made all the difference…because when fighting childhood cancer, the old axiom is definitely true–“ATTITUDE IS EVERYTHING”.

Since that time, of course there have been difficult times.  Our family has shared tears as we watched Megan’s continual struggle with the mental and physical battle that accompanies fighting childhood cancer.  Of course there have been those “Why us?” moments as our entire family has been profoundly impacted by this nasty disease.  Of course there have been those moments of doubt as Megan relapsed not once, not twice, but three times.  Of course there have been numerous moments of anger as we educated ourselves on how little progress has been made over the past 50 years in treating Megan’s type of cancer…and childhood cancer in general.  But no matter how difficult things have been, Megan’s fighting spirit, steely determination, undying grace, and generous heart have continued to fuel us all through the extreme ups and downs of this arduous journey.

It’s times like Christmas where we can all pause, take a breath and truly reflect on the past.  Sure…Megan and our family have been dealt a rough hand, but we have also learned that you have to play the hand you’re dealt to the best of your ability.  This past week was a welcome reminder that our family’s blessings far outweigh any challenges cancer has tried to throw at us.  Megan’s wise words from five years ago have never rung more true…”Please don’t say I’m sorry”…because childhood cancer will never dictate, define nor determine our family’s outlook on life.  We are truly blessed.

Merry Christmas to everyone!  Here is our week in pictures.

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Aunt Janet and Cousin Carly came to visit for Christmas. Here is Carly with the girls.
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Kenzi is home from college!!! It is so nice to have our family together for a couple weeks. She and Megan decided to make a Frozen 2 gingerbread castle to use as a centerpiece for Christmas.
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Aunt Janet, Carly and our family went to Christmas Eve church service with Grandpa and Grandma Coope. Then we all went out for supper together prior to exchanging gifts.
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My dad used to take a picture of my siblings and I at the top of the stairs on Christmas morning. Of course, I have carried on that tradition with my kids…and Sparky 🙂

Here are some pictures from our family Christmas morning…complete with our traditional breakfast of homemade cinnamon rolls and egg casserole.

Of course…the pets love Christmas too 🙂

After we finish opening presents, the Emerson girls always stop by for breakfast and a gift exchange.  The four “sisters” always have so much fun together.

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After Christmas Day, we went to Lisle to watch Madison Emerson play in a holiday basketball tournament, and then our family went with the the Emerson’s for dinner.  It was fun to celebrate Megan’s five year anniversary with our awesome neighbors.

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After all of the excitement, there is nothing better than a nap with her Boo Boo Kitty.

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As another year comes to a close, it’s a chance to reflect on our family’s many blessings.  We could never thank our family, friends and everyone on “Team Megan” enough for the love and support you have shown Megan and our family over the past five years.  All of you have played an integral role in Megan’s story of triumph over childhood cancer. She continues to defy all of the odds, and of course her incredibly positive attitude and fierce determination have played a major role in her success…but so has the loving support she continues to receive from those friends and supporters near and far.  2020 is going to be the year that Megan is finally able defeat cancer once and for all.  Until next week…

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Another Chapter of the Ups and Downs

The sweetest word a cancer patient can hear is “remission”.  I will never forget the first time we heard those words spoken about Megan in late January, 2016.  She had just completed a grueling 54 weeks of chemotherapy and had finally come out victorious against cancer.  The feeling of euphoria from our family was unbelievable as we were all so relieved that Megan had finally beaten down cancer and could now get on with her life.  Because we were still relatively new at the childhood cancer game, little did we know that hearing remission for the first time was far from the final chapter of this story.  Megan was in remission for a full year before she relapsed in February, 2017.  However, naivety caused us to be unaware that her year in remission would be full of the mental and physical battles that accompany being a childhood cancer survivor.  Although Megan was devastated when she learned she had relapsed, she was almost relieved to go back on chemotherapy.  That might sound strange to some, but even though the physical torture of the treatment was awful, there was a mental calmness that came over her knowing that chemotherapy was attacking any cancer cells in her body.  While she was receiving treatment, the constant mental battle of wondering if or when her cancer would return was finally relieved.  Megan’s latest relapse was treated with an experimental chemotherapy combination, and although it was supposed to last 36 weeks, her body could only handle 24 weeks of the treatment.  Her lung damage was too severe to risk any further treatment.  So about a month ago, Megan received the news that she was officially in remission.  Although that was such amazing news, we all knew that Megan’s mental battle was beginning all over again.  She has been battling back with everything she’s got, but sometimes, there are events that cause that mental doubt to creep back in.  As I have mentioned many times before, fighting cancer is much tougher mentally than physically…and when you are a teenage girl battling childhood cancer, the constant mental struggle can be so difficult.

Imagine worrying that every ache, pain, or bump you experience could be the return of cancer.  That’s everyday life for Megan.  Over the past four years that she has been in this constant cycle of treatment, remission, treatment, remission, etc., she has become fairly adept at overcoming the fear.  However, there are times that it becomes too much and she needs some reassurance.  Such was the case earlier this week.  Megan has been having some pain in the area of her left clavicle, and when any pain in her body arises, she immediately starts feeling for tumors.  After feeling the area around her left collar bone over and over again, she believed she felt an abnormality on the bone.  Deb and I tried to feel it, but couldn’t; however, Megan was convinced it was there.  After a couple days of this, she said she needed to see her oncologist to make sure.  As usual, everyone at the Central DuPage Hospital Oncology Clinic was amazing and Dr. Hayani got her in the same morning I called.  They took bloodwork and Dr. Hayani spent a long time giving her a very thorough physical exam.  He also looked at her MRI from a month ago and reviewed it with the radiologist prior to Megan arriving.  After his exam, he assured Megan that there was nothing there and everything was fine.  That obviously made Megan feel much better, which was a good thing, because her sister arrived home from college on Monday night for her winter break!

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Kenzi enjoyed another banner semester at the University of Wisconsin–Madison.  She is still studying Communication Disorders and is on schedule to graduate in four years.  Not only is she doing incredibly well academically, but she loves the college campus and everything a large college town has to offer.  She attends all of the home football games and follows the boys basketball and the girls volleyball teams closely.  In fact, on Thursday night we all watched the Badger volleyball team win their NCAA Tournament Final 4 match.  On Saturday night, we held a watch party at our house for the championship game against Stanford.  Makenna Emerson and her boyfriend Ryan stopped by to watch the game with all of us.  Although the Badgers couldn’t pull out a win, we still had fun.  Here is everyone getting ready to cheer on the Badgers 🙂

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Although Megan received good news from Dr. Hayani and was so excited that her sister was home, she received some tough news this week that really hit her hard.  Over the past five years, Megan has connected with her fellow teenage cancer fighters from all over the country.  Although most of their connection is through social media, she always looks forward to attending Curefest in Washington, D.C., which is when she connects personally with all of her brave friends.  It’s amazing to watch these girls together because they share a connection that none of us could ever understand.  Because of their shared stories, they go from strangers to best friends in minutes.  These girls have become such an important part of Megan’s support system…which makes losing yet another one so devastating for her.

On Friday, Megan was so excited because she and Kenzi were planning to go out for lunch in Joliet and then go see the new movie, “Cats”.  Megan saw the musical “Cats” in Chicago and couldn’t wait for the movie version to come out.  Right before Megan walked into the theater, she received the news that her friend Lily Weaver had passed away that very day (December 20) after a long battle with Ewings Sarcoma.  Megan first met Lily at Curefest 2018 and they immediately hit it off.

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Lily’s positive attitude and outgoing personality was infectious.  She was a beautiful young lady that was taken from us far too soon.  Hearing the news the Lily had passed brought with it a flood of emotions for Megan.  Of course Megan was upset about losing yet another of her friends.  In the midst of tears, Megan asked me, “Why do my friends have to keep dying?”  Tragically, I don’t have an answer for that question that makes any logical sense…but that’s another topic for another post.  Not only was Megan mourning her friend, but every time one of her friends dies from cancer, she starts to question her own mortality.  She goes through a process of doubting her ability to beat this beast and it scares her.  We try to comfort and reassure her, but none of us can really ever understand what she is feeling.  Lily was a blessing to everyone who knew her, and we hope she is resting in peace.  Here is a screenshot of Megan’s recent Facebook post honoring her friend Lily, which contains a picture of them from Curefest, 2019.  I think Megan’s post says it all.

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The timing could not have been better for the Bugg family Christmas celebration today.  Megan needed a diversion and getting together with family was just the ticket.  We had so much fun kicking off the Christmas season at the Bugg family farm.  Here are some pictures from the celebration.

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The girls with Uncle Todd and Gina
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The girls with Uncle Matt
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My niece Emily, her husband Matt, and their cute daughter Olivia.
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Grandpa and Olivia

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Kenzi’s boyfriend Nick forced Deb into a picture 🙂

We were also able to grab a couple of family pictures this morning before we left for the farm.

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It’s always entertaining to try and get a picture with the pets 🙂

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Fighting cancer is a constant battle.  We continue to follow Megan’s lead as she has taught us to seek out and treasure the beautiful moments that each day brings.  During the tough times, those beautiful moments might be a little harder to find, but they are always there if you look hard enough.  It’s going to be a very merry Christmas!!!  Until next week…

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Who Will Join Them?

Over the past five years, Megan’s body has been ravaged by 120 weeks of intense chemotherapy treatments.  The damage done by these toxic drugs is devastating.  Most people’s familiarity with chemotherapy starts and ends with baldness and nausea.  Once you have watched a loved one go through the horror of these awful drugs, you painfully realize that baldness and nausea are just the tip of the iceberg, because both of those side effects are temporary.  Of course there is the mental anguish that accompanies losing your hair…especially when your first experience with hair loss is as a 13-year-old girl in 8th grade.  However, even though that was initially tough for Megan, she always knew that when she was finished with treatment, her hair would grow back.  That issue was only temporary.  Nausea from chemotherapy is really tough to tolerate…especially the first few times a cancer patient experiences this side effect.  However, for a childhood cancer patient, eventually it becomes just another part of the process.  Megan got to the point where she would calmly go into the bathroom, throw up, wipe and rinse her mouth and then just crawl back into bed.  Once again, she slowly came to the realization that “this too shall pass” once she completed her treatment.  Unfortunately, there are so many other side effects of these toxic chemicals we use to treat childhood cancer that are much longer lasting and cause much more disruption to the daily lives of these kids.  It’s these more obscure and much more devastating side effects that Megan is struggling to recover from…and for her, the process is agonizingly slow.

One of the most prevalent and difficult side effects of chemotherapy is the nerve damage that it causes.  Vincristine is one of the most common chemotherapy drugs used to treat childhood cancer.  As an aside, to demonstrate how little progress has been made in the treatment of Alveolar Rhabdomyosarcoma, Vincristine was first discovered as a treatment for cancer in 1961…you read that right…1961!!!…and it is still the most prevalent treatment used today.  Just imagine if the medical field had made such little progress in the treatment of AIDS, heart disease, surgical procedures, and most every other malady known to humans.  It should be completely unacceptable that we have made virtually no progress with so many types of childhood cancers, but for some reason, it is just accepted in our country that these kids don’t matter.  Anyway…one of the devastating side effects of Vincristine is painful and long-lasting (sometimes permanent) nerve damage. It caused Megan such painful neuropathy in her hands and feet, and to this day, she still struggles to put her socks on because of the irritation it causes her feet. At points in Megan’s treatment, she would lay in her bed crying from the pain in her hands and feet.  I even remember her wearing gloves on her hands to try and lessen the painful sensation.  More importantly, the nerve damage caused a serious case of foot drop for her which resulted in months of casting and physical therapy to somewhat correct the issue.  Because she had so much difficulty walking, she is still trying to fight back from the vicious cycle the nerve damage helped cause.

Megan also took another chemotherapy drug called Doxorubicin, which cancer patients not so fondly call “The Red Devil”.  Doctors have to monitor this drug very closely because it causes heart damage, which is exactly what happened to Megan.  After taking the drug over an extended period of time, she had to see a cardiologist because her heart functioning had been damaged.  She still takes medication as her body tries to mend the damage to her heart caused by “The Red Evil”.  By the way…as another aside…Doxorubicin was originally approved by the FDA in 1974, so two of the first drugs Megan took were about 55 years old and 40 years old respectively.  Just to further reiterate how far behind our country is in the treatment of childhood cancer, the third major chemotherapy drug Megan was on during her initial 54 weeks of treatment was called Cyclophosphamide, which was approved by the FDA in 1959.  So to summarize, the three primary chemotherapy drugs used to treat Megan’s initial diagnosis were first used in 1959, 1961, and 1974.  In all of those years, treatments for kids fighting ARMS and other types of cancer has remained virtually unchanged.  I will never understand how this is accepted in a country as advanced and wealthy as ours.

The most recent experiment chemotherapy treatment Megan experienced for her third relapse was a combination of Docetaxol, Bevacizumab,and Gemcitabine (called TAG).  Although Megan responded very well to this treatment combination, after about five three-week cycles of treatment, she started having great difficulty breathing.  Although her oncologists wanted her to complete 12 three week cycles (36 weeks), after cycle #8 it became apparent there was too much risk to her lungs to continue.  After a lung capacity test showed significant damage, her medical team decided she had to stop treatment immediately.  Luckily, the treatment was working and her scans showed no sign of disease, but the damage to her lungs was definitely impacting her quality of life.  It got to the point that she couldn’t even get dressed in the morning without gasping for air, and she became relegated to a wheelchair to travel any distance outside of our house.  She is currently taking an inhaler, which gives her some short term relief, but we still do not know how long it will take for her lungs to recover.

Nerve damage, heart damage and lung damage caused by chemotherapy have caused a vicious spiral for Megan.  With all of these issues, obviously the last five years have made physical activity very difficult for her.  As a result, she has lost so much strength and stamina, and trying to get it back while struggling to breath is very difficult. When she does try to participate in something requiring any physical exertion, it is usually followed by a nap with her beloved pets 🙂

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I have said it many times, but Megan is the toughest teenage girl I have ever seen.  Her ability to stay positive and hopeful in the face of so much adversity is inspirational to all who know her.  However, even for someone as strong as Megan, this recovery process seems so slow, frustrating and disheartening.  Now that she is off of chemotherapy, she wants to feel better immediately.  She wants to start living the “normal” life that cancer unceremoniously took from her over the past five years.  She wants to be able to exercise and get her strength back so she can finally walk around the shopping mall with her friends; start planning for her future career; travel without worry of getting around; and so many other experiences and opportunities that most of us take for granted.  Unfortunately, the past five years have taken such a toll one her physically that it is going to take more than a few days, a few weeks, or even a few months for her to recover.  Deb and I see definite signs of her gaining strength, but it’s not coming nearly fast enough for Megan.  Although we keep reminding her that she is getting better and that slow and steady will eventually win the race, she wants things to be “normal” now…which given the past five years is an understandable wish for her.

The physical and mental strife caused by childhood cancer is immeasurable.  It seems so unfair that these kids also have to deal with all of the additional side effects caused by the treatments they are forced to endure to try and win their battle with this awful disease.  It’s for these reasons that Megan continues to fight to raise awareness and funding for childhood cancer research.  Megan is currently working with a large non-profit organization trying to convince them to fund a very promising clinical trial focused on the treatment of relapsed Alveolar Rhabdomyosarcoma (ARMS).  As we contacted doctors/researchers from all over the country to find out what potential clinical trials for ARMS could be out there, a consistent and sobering theme came up over and over again.  Whether the doctors/researchers were on the west coast, east coast, north or south, they all had a very common plight.  All of them have done research in their labs with lab animals and seen success in treating ARMS.  The problem is none of them can get their breakthroughs to clinical trial due to a lack of funding.  As I’ve mentioned many times, the pharmaceutical companies aren’t interesting in funding childhood cancer clinical trials because they don’t see any profit in these kids.  That leaves the funding responsibility on the Federal government and they have failed these kids as well by only allocating a paltry 4% of all Federal funding for cancer research specifically for childhood cancer research.  Megan and I get so hopeful as we hear the excitement in these doctors’ voices when they talk about the promising research they are conducting in their labs to combat ARMS.  These doctors get even more excited when they learn that Megan may have a funding source for them to get their idea to clinical trial.  However, it is also so disheartening to know that the elusive silver bullet is most likely already contained in one of these innovative labs…and due to a lack of funding…these promising treatments and potential cures will never see the light of day.  How sad is that?

In the meantime, brave kids like Megan and her cancer fighting friends will continue to hold up their end of the bargain by continuing their valiant and courageous fight against this evil, ridiculous…and CURABLE…disease called childhood cancer.  I look forward to the day when the adults who hold the funding keys will display the same level of courage, resolve and compassion by joining these kids in their noble crusade.  Until next week…

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No Room for Cancer at the Party

It’s only been two weeks since Megan received the news that her doctors were stopping her chemotherapy treatments.  Although this experimental combination of chemotherapy drugs was working, as evidenced by her recent clear scans, the damage the toxic drugs were doing to her lungs made it too risky to continue with the treatments.  Her oncologists had hoped to get her through 12 rounds (36 weeks) of treatment, but Megan’s body could only handle 8 rounds.  Although you would think Megan would have been excited to know that she would not longer have to go through these toxic treatments, the reality was that stopping the treatments really scared her.  Chemotherapy is brutal, but Megan knows that while she is getting these drugs, her cancer most likely will not return.  Once she is off chemotherapy, she is understandably scared of a relapse, because she has experienced that three times before.  Although she went through a couple tough days following this news, in typical Megan fashion, she bounced back quickly and decided it was time to make the most of her reprieve.  Based on her clean scans, her doctors declared her officially in remission…just in time to regain her health for the holiday season.

Like all kids who go through the nightmare of chemotherapy, Megan’s body has been ravaged by 114 weeks of these toxic drugs.  Her latest treatments really wreaked havoc on her…especially due to the damage to her lungs.  Late in her treatment, Megan became so short of breath that just walking from the couch to the bathroom left her gasping for air.  As a result, she was forced to be fairly sedentary, which led to her becoming physically weak.  As we look back on it now, chemotherapy really had her trapped in a vicious cycle as she tried her best to get to the end of her 36 weeks of treatment.  Once Megan’s lung test results came back, it was obvious that as much as she wanted to continue, her body was done with chemotherapy.  Unfortunately, that is the plight that faces most all kids fighting this awful disease.  Due to a serious and sad lack of attention to these brave kids, they are left with no other clinically proven option than these 30 year old toxic chemotherapy treatments that can literally cause as much damage as the cancer.  That’s why Megan is continuing to fight so hard to raise awareness and funding so that other kids don’t have to endure what she has been through at the hands of these archaic drugs.

Since Megan got over the initial shock of learning that she would not be able to complete her 36 weeks of chemotherapy treatments, she has decided it was time to flip the switch and take back control of her life.  She doesn’t have to go back for scans until mid-February, so until then, she is going to do her best to put childhood cancer on the back burner and continue on with her life.  Now that she is a couple weeks post-chemotherapy, we can see her body slowly getting stronger.  She is trying to slowly gain back her stamina by walking a little more.  Even though she still needs an inhaler to help catch her breath, she is looking for opportunities to strengthen her legs and lungs by walking when she can.  Just today, she woke up before 7 a.m. and said that she wanted to go grocery shopping with Deb and I.  She needed her wheelchair to get around Wal-Mart and Aldi, but when we got to Walgreens, she said she wanted to walk.  Two weeks ago, there is no way she could have walked through a store without assistance.  She is also focusing on eating a healthier diet.  When she was on chemotherapy, she also had to take a steroid to combat the side effects.  That steroid caused her eating habits to alter, which is a natural occurrence with many such drugs.  As a result, she said she didn’t feel good, but since she has focused on eating better, she claims to be doing much better.  She is also taking advantage of her newly found freedom to reconnect with friends, which she did multiple times this week.

Early this week, Megan met Kim Scerine for lunch.  Megan works at the dance studio that Kim owns, and they have become fast friends.  Kim and all of the people at the Broadway Dance Studio have been so supportive of Megan, and we are very thankful they are a part of her life.  Makenna Emerson also stopped by one day to take Megan to breakfast, which is always fun for her.  As you can see, the two of them get a little goofy when they are together 🙂

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On Friday, Deb and Megan went to the annual Central DuPage Hospital Oncology Clinic holiday party.  I have mentioned it many times before, but I don’t know how we could ever properly thank all of the incredible medical professionals at CDH.  We could not be happier with the care they have given Megan.  All of them have become a part of our family, and Megan absolutely loves them.  Here are a few pictures from Friday’s party.

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Kathy is the Nurse Practitioner at the clinic. She has become like Megan’s second mom at the clinic. She is one in a million and Megan adores her.
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Allie is the Child Life Specialist at the Clinic, and she and Megan have become very close. When Megan is having a rough day, Allie is her go to buddy.
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Dr. Hayani has been with Megan since day one of her journey five years ago. He is a brilliant doctor and an even better person.
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Aileen is also a Child Life Specialist who usually works at the proton radiation center. I will never forget when Megan was starting her latest round of proton radiation and was very nervous. Aileen worked a full day, but then came back at 8:00 p.m. that night to be with Megan for her first treatment. Once again, another very special person.
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This is Lexi. She is usually the first person Megan sees when she gets to the CDH clinic. She always greets Megan with a smile and they immediately start talking about their latest food adventures. Lexi always brightens Megan’s day.
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Megan with more of the fantastic nurses that make up the team at the CDH clinic. They are all such awesome people 🙂
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Megan and her mom with Mr. and Mrs. Claus 🙂

On Saturday, we took Megan to Naperville to spend the day with her good friend, Caitlin Cannon.  They took a trip to Starbucks, Mod Pizza, and went to see Frozen 2.  They even found time to take Caitlin’s puppy to visit Santa.  Megan ended up staying with Caitlin from 11:00 a.m. until 7:00 p.m., which is a really long day for Megan.  When she got home, she said she had a blast, but was really worn out.

Cancer has hit Megan with everything its got, but after five years of fighting back, Megan is as determined as ever to come away from this battle victorious.  There is no way she is going to let cancer dampen her holiday spirit.  She has big plans this holiday season, and there is just no room for cancer at the party.  Until next week…

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