It’s Getting Better Every Day

Once your family experiences childhood cancer, it’s always there.  When you wake up in the morning, you think about it.  When you have down time at work, you think about it.  When the phone rings, and it’s Megan, I always have that instant moment of fear that something is wrong.  When everyone goes to bed and I’m watching late night television, a commercial comes on about cancer and there it is again.  When I go to bed, the last thing I think about is cancer.  If cancer’s presence is that powerful for me, just imagine how it is for Megan.  I can’t begin to imagine the stress that being a childhood cancer survivor has on her everyday life.  However, somehow she has learned to actually draw strength from her plight and she now proudly wears her childhood cancer survivor badge with honor.  In many ways, I think Megan is much more at peace with her situation than those around her, because her belief in her ability to win this battle has never wavered.  I try to draw my own courage from her strength, but sometimes I need a weekend like this one where I’m surrounded by family to remind me how lucky our family really is.

Megan started the week in exciting fashion as she and her good friend Katelyn flew to visit Mary Beth and Ron Marino in Ft. Myers Beach, Florida.  I used to work with Mary Beth, and we became close professional friends, so we have stayed in touch ever since.  When Kenzi was a junior in high school, she and a friend of hers went to stay with Mary Beth for spring break.  Since Megan was sick off and on throughout high school, she never got to go.  However, since she has been feeling better, Mary Beth invited her out for a quick four day visit and Megan jumped at the opportunity.  She and Katelyn had an awesome time as Mary Beth is the best hostess ever!!!  We could never thank the Marino’s enough for letting Megan come out and forget about everything for a few days.  Here are a few pictures of their adventure.  As you can see, I think Megan’s favorite part of the trip was Mary Beth’s cat! 🙂

Kenzi came home from college on Friday evening so we could spend Easter weekend together.  There is just something uplifting about having our entire family together…even if it is just for a couple of days.  Megan had to work on Friday from noon until 4:00 p.m., so she got home just about exactly as Kenzi pulled in the driveway.  It was so nice to enjoy a home cooked family meal on Friday and just catch up with one another.  Of course, Sparky was sure happy to see Kenzi 🙂

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Kenzi also brought her hedgehog home for Megan to play with 🙂

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On Saturday, Kenzi had made reservations for all of us to go to TopGolf in Naperville.  None of us had been there before, so we really didn’t know what to expect, but we had a blast!  Kenzi and Megan had not swung a golf club in about 10 years, and although I used to play frequently, once Megan got sick, I decided to put the golf clubs in the basement for the sake of time with my family.  Kenzi’s boyfriend, Nick, came with us as well, and we all just laughed and had the best time.  Here are a few pictures of our golf adventure.

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On Saturday evening, Grandpa and Grandma Bugg drove up to our house because we were hosting an Easter lunch for our family on Sunday.  It was fun to catch up with them, and on Sunday, Uncle Todd, Gina, and Cousin Danny also came over for our Easter feast.  It was awesome to be surrounded by family and enjoy the holiday together.

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I almost forgot…on Easter Sunday morning, Deb put together Easter baskets for the girls and then we had our traditional Easter egg hunt in the house.  No matter how old the girls get, we always have so much fun on Easter morning.

It doesn’t seem like that long ago that we were spending our Easter Sundays either in the hospital, or preparing to head to the hospital on the following Monday morning.  As Megan traverses further and further down the road of recovery, it seems like a little more normalcy is creeping into our lives with each passing day.  On Monday, I need to make Megan’s next appointment with her oncologists, which should be in about two weeks.  From there, we will learn when her next set of scans will be scheduled.  However, until that time, we will continue to follow Megan’s lead and live each day to the fullest.  Instead of wondering why childhood cancer had to infect our family, we will instead focus on everything our family has to be thankful for.  It’s amazing what a weekend together with family will do for one’s outlook on life.

Until next week…

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Here’s the Problem…

After Megan completed her initial 54 week treatment for stage 4 Alveolar Rhabdomyosarcoma (ARMS), she became very interested in childhood cancer research statistics.  What she found was both sobering and troubling to her as she discovered that the Federal government was doing next to nothing to fund childhood cancer research.  She also learned that the major pharmaceutical companies ignored childhood cancer because they did not see these kids as a profitable venture.  She learned that she was being treated with many of the same chemotherapy drugs that her parents would have been treated with when we were kids.  She learned that over the past 50 years, there has been NO CHANGE in the survival rates for kids with stage 4 ARMS!!!  She then started talking to the many other childhood cancer warrior friends she made via social media, which is when she learned that kids with Ewings Sarcoma, Osteosarcoma, DIPG, etc. were all facing the same uphill battle she was.  Due to a lack of Federal and private funding, these incredibly brave kids were being treated with outdated treatments, and without a change in emphasis and funding, they had little hope for the future.  That’s when Megan decided that she had a choice.  She could either sit on the sidelines feeling sorry for herself and complain, or she could actually do something about it.  I will forever be proud of her for choosing the latter.

Megan starting talking to her oncologists about promising research projects.  She also reached out to her friends and anyone else who would listen.  After considering her options, she settled on supporting the research Dr. Walterhouse was conducting at Luries Children’s Hospital in Chicago.  When she first went to meet with Dr. Walterhouse, he enthusiastically explained in detail the research he was conducting.  He was specifically studying why ARMS and Ewings Sarcoma cells became immune to certain chemotherapy drugs.  If he was successful, it would be a game-changer in fighting childhood cancer.  Currently, due to such limited treatment options, once an ARMS patient relapses, they are treated with a different set of chemotherapy drugs because the cancer cells are now immune to the first set of chemotherapy drugs.  That’s why relapses can be so devastating for these kids.  Megan has relapsed three times, which means that her research-based chemotherapy options are gone.  Fortunately, her relapse tumors have been caught early and were small enough to be treated with proton radiation.  Unfortunately, other kids with her disease are not so lucky.  If Dr. Walterhouse was successful in his research efforts, it would have been a huge advancement in treating Megan’s type of cancer.  As a result, Megan decided she was all in.  She was ready to financially support the research that could not only save her life, but the lives of so many other brave childhood cancer fighters.

In the past year and a half of supporting Dr. Walterhouse’s research, Megan has raised over $165,000.  There are so many generous individuals and organizations who have helped her get to this point in her fundraising, but it is Megan’s passion that has always been the driving force.  However, on Thursday, Megan got some sobering news.

Dr. Walterhouse set up a call with Megan and I on Thursday.  Much to Megan’s dismay, he shared that he was going to have to close down his lab.  Dr. Walterhouse is a brilliant man who is one of the leading oncologists in the country in treating childhood sarcoma patients.  Over the past few years, he not only was conducting his research, but he was also seeing a full load of patients who were counting on him.  Here’s the key…He told us that funding for research projects such as his were so limited, and he just could no longer dedicate the time necessary to try and keep securing funding for his research.  Spending time trying to secure funding was taking away from the time he needed to spend treating his patients.  It is important to note that all of the support everyone has provided to Megan’s fundraising project has not been for naught.  The National Institute of Health has shown an interest in the cells Dr. Walterhouse’s research has produced, which is a huge step in the right direction.  Also, Dr. Walterhouse is going to complete what he can in his lab over the next two months and write up his results.  This will allow others in the medical research field to hopefully pick up on his research and bring it to fruition.  However, it is still very frustrating to see yet another promising childhood cancer research project has been cut short due to a lack of available funding.

I was with Megan when she took the phone call from Dr. Walterhouse, and at the time, I was oblivious to the impact it had on her.  She was doing her best to hide it, but when I got home from work I could tell she was still really upset.  After some prodding, she said that she was upset because she really believed Dr. Walterhouse was going to find the cure for her cancer.  She had such high hopes that a cure was on the horizon, and now she felt defeated.  She said she wasn’t angry with Dr. Walterhouse because she knows it wasn’t his fault, and she also knows that there is a good chance someone will pick up on the great work he has already done.  Although Megan was understandably upset, she never stays down long as she is already actively searching for another promising research project to support that is studying a cure for ARMS.

Megan asked me to sincerely thank everyone who has supported her fundraising efforts, but she will now have to close her fundraising efforts until she determines a new and promising research project that needs financial support.  Megan knows the cure is out there…we just have to create the national urgency to find it.  She and her friends are working on that.

On an exciting note, Megan was recently honored for her advocacy and fundraising efforts for childhood cancer.  Her high school principal, Mr. Hamann, nominated Megan for an American Red Cross Hero award.  Annually, the Red Cross provides Hero Awards to people across the Chicago-land area in 11 different categories.  Megan was so excited to learn that she was chosen as the Hero Award winner for the youth category!  She will be honored at a breakfast in Chicago on May 1 that will have about a thousand people in attendance.  The American Red Cross had Megan come to their home office in Chicago to shoot a video that will also be aired at this event.  On Thursday night, the Red Cross held a reception for all 11 Hero Award recipients and their families.  It was a wonderful event, and Megan was quite humbled to be in the presence of so many incredibly giving and generous people.  She was also excited to learn that another of the 11 Hero Award winners was from the area as well.  Detective Paul Clampitt with the Grundy County Sheriff’s Department was also recognized for the heroic actions he took to save a person’s life in Morris, IL.  Here is a picture of the two of them at the reception.  Also, I included a picture of Megan next to her Hero Award picture.  The May 1 Hero Awards Breakfast will definitely be an exciting event, and it will be yet another opportunity for Megan to spread her message of childhood cancer awareness.  Many thanks to Mr. Hamann for nominating Megan for this award.

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Megan was excited that the weather was nice enough earlier this week that she could get out and watch her good friend and next door neighbor, Madison Emerson, play softball.  It was even more exciting when Madison hit two home runs in a big Coaler 3-2 victory!  The team even had a childhood cancer awareness poster on their dugout, which was very touching.  After the game, the team showed their continued support by getting a team picture with Megan.  Of course, Megan also got her picture with Madison.  Thanks to the CCHS softball team for supporting Megan and all kids with childhood cancer!!!

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Until next week…

 

Still Fighting for the Cause

It’s now been three and a half weeks since we received the fantastic news that Megan’s CT and PET scans showed no signs of cancer.  Previous to these scans, her doctors had been monitoring a mass in her chest that had started to work it’s way around her aorta. The mass finally reached a point where the oncologists had to take action. Since this was Megan’s third relapse, her limited chemotherapy options had been exhausted, which meant that proton radiation was her only research-based option remaining.  After three weeks of receiving proton radiation treatments five days per week, her scans thankfully showed that the treatment worked.  Although the CT showed that the mass in her chest was still present, it had shrunk considerably, and most importantly, the PET scan showed the mass had no cancerous activity.  It was the best possible news we could have hoped for!!!  Megan’s doctors told her that she didn’t have to come back for another check-up for two months, so ever since, Megan has been focusing on her personal physical and mental health.  However, although she is taking time to concentrate on herself, her advocacy work for childhood cancer is still going as strong as ever.  She is determined to help find a cure for this awful disease so no more kids have to experience the horror that has plagued her for the past four years.

Megan continues to actively raise money to support the important research being conducted by Dr. Walterhouse at Luries Children’s Hospital in Chicago.  Due to a lack of funding from the Federal government, and the nearly complete lack of interest in childhood cancer by the big pharmaceutical companies, research for childhood cancer is largely funded through private efforts.  There are many childhood cancer patients and their families who are actually forced to raise funds themselves to sponsor the research that could save their lives.  As I’ve expressed many times before, in a country as wealthy and advanced as ours, this just seems so wrong.  However, instead of feeling sorry for themselves, Megan and her fellow childhood cancer warriors have decided to take action.  Thanks to the generosity of so many people and organizations, Megan has now raised nearly $165,000 for childhood cancer research.  Her goal is to hit $200,000 in total, so if anyone is interested in making a tax-deductible donation, you can do so through Megan’s personal fundraising page through Luries Children’s Hospital “Circle of Friends”.

Speaking of the generous people and organizations who continue to support Megan’s cause…Coal City High School still stands out as one of her most ardent supporters.  Due to Megan’s illness, she missed the majority of her high school career.  However, Principal Mitch Hamann and the CCHS students and staff continue to provide her with tremendous support.  Recently, the school held a raffle and Dance Marathon to raise money for Megan’s childhood cancer fundraiser.  Last week, two representatives from the school presented Megan with a check for $2,719 for Dr. Walterhouse’s research.  Megan was so thankful and excited to receive such a generous donation for childhood cancer.

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Alexis Medina and Gabby Cinotto present a check to Megan, which will be added to her childhood cancer fundraising efforts.

On Saturday, Megan, Deb and I took a road trip to Madison, WI to visit Kenzi.  Because our Spring Break’s were different this year, Kenzi wasn’t able to accompany us on our recent vacation to Los Angeles.  Since we missed her on our trip, we were anxious to go see her on Saturday.  Kenzi spent Saturday morning volunteering for the Communicative Sciences and Disorders department at a children’s science fair.  She finished at 12:30 p.m., so we picked her up from there and all went to one of her favorite Italian restaurants.  After that, she took Megan to a clothing store where her roommate works to shop for her high school graduation dress, and then we took Kenzi to Target to get some staples for her apartment.  Although it is six hours of driving to get there and back, it was well worth it to see her and have our entire family together for a few hours.  Kenzi continues to thrive at UW and we are so proud of everything she continues to accomplish.

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Deb and Kenzi at lunch.
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The girls were excited when they saw this. They used to eat this at Aunt Tammi’s when they were little, so they wanted me to take a picture and send it to her 🙂
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Of course, no trip is complete without a trip to the corner Starbucks near Kenzi’s apartment 🙂

As Megan continues to take back her life from cancer, she has slowly been gaining more and more energy.  She has been working at Broadway Dance Studio for over a year now, and she absolutely loves it.  She works there two days per week, and recently decided that she wanted to find another job.  She took it upon herself to go visit a new clothing boutique in Coal City, and when she got home, she told us that she had landed a new job.  She has now started working at the “Hustle & Hunee Boutique” on Tuesdays and Fridays.  She was so excited because fashion is a passion of hers, so she is thrilled with her new position.  She has already had her first day of training, and she came back so excited!!!  This is just one more step in her efforts to regain the life that childhood cancer tried so hard to take from her.

It’s been another great week as Megan and our family continue to try and push cancer to the back of our minds.  I fully realize that as a cancer survivor, Megan will be dealing with the impact of cancer for the rest of her life.  However, it’s important that none of us let cancer be the determining factor in our attitude and outlook on life.  As Megan continues the healing process, we will continue to follow her lead and maintain our staunch belief that cancer cannot beat her.  In this battle, attitude is everything, and Megan’s positive attitude and belief in herself has never waned.  Cancer is losing more and more ground by the day, and it’s only a matter of time until Megan defeats the beast for good.  Until next week…

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A Well-Deserved Week Away

After receiving the news that Megan’s most recent scans were clear, we could now focus on one of her favorite things to do…travel.  With Spring Break this past week, we were able to get away to Megan’s favorite place…Los Angeles.  Since the very first time we traveled there years ago, Megan has always been infatuated with everything about the City of Angels.  She loves the weather as the dry air helps her to breath easier.  Since her chemo treatments, Megan has a lot of trouble handling heat and humidity as she tends to overheat easily and struggles to catch her breath.  However, in the relatively humid-free air of LA, she gets around much easier.  She also absolutely loves everything about the entertainment industry, and thanks to some native Illinoisans and the magic of social media, Megan has made some amazing connections in the Hollywood scene.  Obviously, Megan was really looking forward to this vacation, and it didn’t disappoint.

We are so thankful for Kay Cannon and her family for allowing us to stay with them in LA.  I have spoken of Kay’s amazing success story in the past as she continues to climb the ladder as an esteemed writer and director in Hollywood.  However, even with all of her success, she has never forgotten where she came from, and is still one of the kindest, most giving person I know.  I was one of her teachers when she was a student at Reed-Custer High School, but she and Deb have always shared a special bond as Deb was her volleyball and track coach.  Kay and her family always make us feel so welcome and comfortable, and we could never thank them enough.  Here is a picture of all of us. I’ve also added a few of just Megan and Kay.  She is so much fun!

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As you can see from the picture, Kenzi isn’t with us.  Unfortunately, for the first time ever, her spring break from college was different than ours, so she was home the week prior to our vacation.  We really missed having her with us on this trip, but hopefully our entire family can get away somewhere this summer.

One of the first connections Megan made in LA via social media was the actor, Jonathan Sadowski.  He has been so supportive and generous with his valuable time every single time we visit, and this week was no exception.  We met up with him on one morning for breakfast and he was kind enough to also join us for my birthday supper, which was at an incredible barbecue place he picked out.

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Another highlight of the trip was attending the “Late Late Show with James Corden”.  One of my good friends is Diane Cepela, and her daughter Jill works as an Assistant Writer for the show.  When Diane heard we were heading to LA, she contacted Jill who kindly got us VIP tickets for the show.  It also just so happens that Kay Cannon is friends with James Corden, so she contacted him prior to the show and asked if he could come out and meet us.  It was quite a thrill to meet him in person, and the show was so funny.  Thanks so much to Jill Cepela for allowing us to attend such an exciting event.

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Megan and Jill

One of the most special aspects of southern California for Megan is that two of her long distance cancer-surviving warrior friends live there.  As I have explained in the past, these friends have become such an important source of support for Megan, and when they are together, you can feel the connections instantly.  This trip, we were so thankful that Kasey Harvey and her lovely family made the drive to meet us for dinner.  Kasey was the very first person Megan connected with via social media, and getting these two brave cancer survivor sisters together again was very special.  Here is a picture of the two of them.

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Sophia is another cancer warrior that Megan met via social media, and her mom dropped her off so the girls could go shopping together at The Grove in LA.  Megan had so much fun catching up with Sophia.

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We stayed pretty busy for the entire week we were there, so the easiest thing to do is share the rest of our vacation via photos.

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Megan went with Kay Cannon’s daughter, Leni, to Duff’s Cakemix where they had a blast decorating a cake.
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Another LA connection Megan has made via social media is with Melissa, who is the mother of Maddie and Mackenzi Ziegler who were featured on the TV show “Dance Moms”. When Melissa found out Megan was coming to LA, she generously took time out of her busy schedule to have lunch with Megan and Deb.

We also took a drive to Malibu to visit Pepperdine University and to have lunch at “Paradise Cove”, which is right on the beach.  Megan had heard the views from Pepperdine University were incredible, and she was right!

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Megan and I walked one of the trails at Runyan Canyon. It was a little tougher than we expected, but Megan hung in there 🙂

We also visited the campus of UCLA, which is full of history.

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We took a walk on Venice Beach, but it was a little cold that day 😦
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John Halloran is from Coal City and attends San Diego State University. He made the two hour plus drive to LA to spend an afternoon and evening with us. We had so much fun walking around Hollywood.
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When Megan was getting her proton radiation treatments, her favorite technician was Brittany. Megan was devastated when Brittany took a job in LA. She was so happy when Brittany kindly took time out of her schedule to meet Megan for coffee. They talked nonstop for an hour, and Megan had a blast. Brittany has been a very important part of Megan’s recovery effort.
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And of course…what’s a trip to LA without a visit to In-n-Out 🙂

Although we had a great time in LA, there really is no place like home.  Until next week…

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It’s 90% How You React

Our family is still coming down from last week’s high when we received the tremendous news that Megan’s scans showed no discernible signs of cancerous activity.  She had a CT scan of her chest and a full body PET scan that showed the proton radiation had done its job on the tumor that had shown up in her chest.  Since that tumor had started to work its way around her aorta, we were obviously very concerned.  Obviously we were also very anxious about her full body PET scan, because of all the scans she receives, the PET seems to be the real moment of truth.  A CT or MRI may show a growth, but you really don’t know if its cancerous until the results of that PET scan come in.  Although her PET scan showed a couple of “hot” areas, her doctors said that those two areas did not match up to anything showing up on her CT, which means those spots could be a variety of things.  If Megan didn’t have her history with cancer, a doctor wouldn’t think twice about them, but given her history, they will be watching both spots very closely.  One spot was on the left side of her neck and the other was in her lower back.  Just to put that in perspective, on the PET scan she had about three months ago, it showed hot spots on her left foot and in her groin area, and this time both of those spots were clear.  Overall, we could not have hoped for any better news…and best of all, Megan doesn’t even have to go back for a check-up for seven more weeks!!!  For Megan and our family, two months of peace seems like an eternity…and we intend to make the most of her respite from this awful disease.

As I have watched Megan travel her journey, and have also connected with families of brave childhood cancer warrior across the country, I have become more and more convinced of the role that attitude and belief plays in this journey.  One thing that has never wavered in Megan is her fierce belief that she would beat cancer.  I will never forget her very first day of chemotherapy treatment, which was on December 30, 2014 when Megan called Deb and I to her bedside and lectured us on just how this journey was going to be traveled.  As a shy 13 year old how had just learned she was in for the fight of her life, she stated firmly to us in words I will never forget,

“Please don’t say ‘I’m sorry’, because when you say that it makes me feel like I won’t get better, and I am going to get better.”

Those words turned out to be quite prophetic, because to this day, Megan will tell you that she always believed she was going to win.  Sure, there were some very dark days when she really struggled both mentally and physically with what cancer was throwing at her.  However, in Megan’s mind, the agony she was going through was viewed as a necessary evil that she had to endure to reach her ultimate goal.  Somehow, after going through indescribable mental and physical pain that would bring many adults to their knees, she would soon flash that infectious smile, which I now know was her way of telling us that she had this under control and everything would be okay.  From day one of her journey until today, her belief in herself has never failed, and I firmly believe that is how she has overcome seemingly insurmountable odds to still be with us today.

It is heartbreaking how many Facebook comments and emails I receive from parents who have just learned that their child has cancer.  As a parent, one of the first things you do when you learn such devastating news is to immediately conduct your own Google search to learn as much as you can.  Apparently, when such a search is conducted, parents eventually find this blog site and reach out with questions and in search of support.  It is heartbreaking, but I am so happy that “Megan’s Journey” has turned into a useful resource for parents who are about to embark on this challenging journey.  I always remind these parents that they are now members of an exclusive club that no one wants to join, but as members, they can discover a unique support group that can help them through the toughest times.  I will forever be thankful for Kasey Harvey’s family, as her dad served that exact purpose for me.  Kasey was diagnosed with the same cancer as Megan about three months prior to Megan’s initial diagnosis, so when we connected, he was such a valuable resource because he could let me know what was happening to my daughter and what I could expect next.  It was so comforting to find someone who really understood what Megan and our family were going through.  To this day, we stay in touch as both of our daughters are examples of what a positive attitude can do in the face of daunting odds.

Many of these parents who contact me simply want to know the key to getting through it.  Without failure, I always tell them that they MUST maintain a constant and fervent belief that their child will win.  Our kids know when we are being genuine and when we are faking it.  If they see us lose faith, they will soon follow.  I know it’s an old and tired saying, but in this battle, attitude really is everything.  Before you can win, you first have to believe that winning is not only possible, but inevitable.  I give all of the credit to Megan for the fact that we have always believed in her, because had she not laid down the gauntlet by lecturing us on day one of her journey, I’m not sure we would have been able to keep our faith in the ultimate victory.  But because of her, we have always believed, and although we know that Megan is far from out of the woods, we know that cancer is on the run and the final victory will eventually arrive.  It’s only a matter of time.

It was so amazing having Kenzi home for her spring break for the past week.  Many people forget how hard cancer is on the siblings involved.  I know I have alluded to this many times in this blog, but if you know a family fighting childhood cancer, please do not ever forget the mental toll it takes on the siblings.  They are in this fight also, because they carry the burden of their sister/brother’s illness every single day.  Given all that our family has been through during Megan’s four year fight, Kenzi has had multiple opportunities to use Megan’s illness as an excuse and just throw in the towel.  However, that’s just not in her nature, and we could not be more proud of all she has overcome to get to where she is today.  We just received word last week that Kenzi once again made the Dean’s List at the University of Wisconsin-Madison for her first semester grades.  This semester, she is also knocking it out of the park as she is currently carrying a perfect 4.0!  She is doing all of this while working two different jobs and worrying about the health of her sister from three hours away.  We were sad that our spring breaks did not align this year so we couldn’t vacation together as a family.  However, Kenzi did head to her Aunt Amy’s house in Kansas City for three days for a quick and fun getaway.  She and Aunt Amy always have a blast, and this time was no exception.  I was jealous as they enjoyed some authentic KC barbecue, and Kenzi treated her Aunt to some of her homemade donuts.  Although we missed having her at home, we were happy that she could get away for a few days before she headed back to school today.

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Megan continues to live life to fullest after receiving her latest reprieve from cancer.  She is still working on her mental and physical health by working out, trying to reconnect with friends, and of course…hanging out with her beloved pets.  She refused to every let cancer have the upper hand.

“Life is 10% what happens to you, and 90% how you react to it.”

Charles R. Swindoll

Relief From Scanxiety

Last Tuesday, we received the news every cancer patient hopes and prays for…CLEAN SCANS!!!  On Monday, Megan went to get her PET scan followed by her CT scan, and as always, she got through it with her usual dignity, grace and positive attitude.  Even though she had to get up at 5:30 a.m. to get to her PET scan in time, she greeted everyone at the Northwestern Cancer Center with a smile.  She was thrilled that Aileen, the Child Life Specialist from the neighboring proton center came over to meet her in the waiting room.  She brought Megan a couple gifts and the two of them quickly started talking about their usual topics of kittens, music and TV shows.  It was so nice of Aileen to stop over to keep Megan’s mind off the magnitude of her scans.  Following the long ordeal of her PET scan, we then traveled to CDH to get her CT scan.  After that, it was time to head home and the excruciating wait for results began.

I have written many times about the “scanxiety” that every cancer patient knows all too well.  On the way home, Megan was starving because she had to fast for her scans, so we stopped at IHOP so she could get some chocolate chip pancakes.  While we were waiting for her food, I asked her if she was doing okay.  She responded that she was really doing okay and wasn’t that scared anymore.  When I asked why, she said that she was convinced that if her scans showed something, it would be early and treatable with either radiation or surgery.  She said if that’s the worst case scenario, that given everything she has been through, that’s really not that bad.  Given her positive attitude and belief that she will eventually beat cancer, I know that she really did believe what she was telling me.  However, I also think she was saying that to make me feel better as well.  I think she knew I was nervous, and as she has done so many times in the past, I think she was doing her best to take care of me.  Once again, I had to question who was really taking care of who.  Throughout this journey, there have been so many times that I think Megan is taking better care of us than we are of her.  Her caring attitude and positive attitude are definitely traits I aspire towards.

On Monday night, we spent the evening trying to keep her busy until she finally was able to go to sleep.  The next morning, she slept late, which was her way of avoiding the stress and anxiety she was feeling.  When she did get out of bed, her first text was to ask me if I had heard from the doctors.  At that point, I had not.  Taking matters into her own hands, Megan sent a text to her awesome nurse practitioner, Kathy, to ask if the results had come in.  Kathy said the doctors would be reviewing the results soon.  At about 2:00 p.m., I received the long awaited phone call from Dr. Hayani.  When the phone rings and I see CDH on the caller ID, my heart nearly pounds out of my chest.  I always have to let the phone ring about three times before I have the courage to answer.  When I answered, it was Dr. Hayani and he shared the news we had been hoping for.  He said that the CT scan showed that the tumor in her chest had shrunk dramatically following the proton radiation.  He also said that he didn’t see anything else suspicious in the CT scan.  He then said that the PET scan showed that there was no cancerous activity coming from the treated tumor in her chest!!!  He did say there were a few areas that showed some activity, and in a normal person they wouldn’t think twice about it, but given Megan’s history, they would need to watch those areas closely.  There was a spot in her neck and a spot in her lower back that both lit up a little bit.  However, if any of us had a PET scan, there would be an area here or there that lit up with activity, but it doesn’t necessarily mean cancer.  It could be a variety of other reasons causing the activity, and since her CT didn’t show any tumors in those areas, they will continue to watch.  The other great news was that he said Megan didn’t need to come in for a check-up for two months!!!  That’s one of the longest reprieves she has ever had!!!

When I came home to share that news with Megan, she seemed concerned.  In fact, she had tears in her eyes because she was worried about the spots that lit up on her PET scan.  She said that she just wanted perfectly clean scans for once.  However, after we spent some time further explaining the PET scan process to her, she seemed much more content that she had received the best possible news.  Following the good news, I think her mind and body just needed a break, because she immediately lied down on the couch with her kitten, Willow, and went right to sleep.  I’m sure finally getting some relief from the scanxiety was a sign that her body needed some rest.  I will admit, my body was exhausted as well as I slept better that night than I had in a month.

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To top off what was already an amazing week, Kenzi came home late Thursday night for her spring break.  She has been working so hard at school, and so far, it has been a very successful semester for her.  Her classes are all going well and she loves her job working as a speech pathology aide for a private speech pathologist in Madison.  Kenzi works there three evenings per week, and she has one child each evening that she works with.  I know she is heading down the right career path, because when she starts talking about her kids, she actually starts to tear up with emotion.  She says she absolutely loves her kids and looks forward to seeing them each week.  I’ve always said that when it comes to education, the best educators truly love their students unconditionally, and Kenzi has already displayed that vital characteristic in spades.  Of course, Megan was very happy that her sister was home, as they quickly went shopping, out for supper, and to see the CCHS musical performance of “Tuck Everlasting”, which was awesome!  When Kenzi is around, Megan always seems just a little better.

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This week, we received the news every parent of a child with cancer dreams about.  However, I am too often reminded that we are definitely one of the lucky ones, because Megan continues to defy the overwhelming odds that are stacked against her.  I received a message from yet another parent this week reaching out because her precious 11 year old son was just diagnosed with the same cancer as Megan (ARMS).  Obviously, she was devastated and trying to come to grips with what to do next.  I remember that feeling of shock all too well when we received the news about Megan on December 30, 2014.  In an instant, your entire world is turned upside down and you don’t know what to do next.  That’s why we have to do so much better for our kids.  That’s why Megan continues to advocate for childhood cancer awareness in the hopes that it will result in increased Federal and private investment in researching less toxic treatments for this awful disease.  To date, Megan has raised $160,000 to support the research being conducted by Dr. Walterhouse at Luries Children’s Hospital in Chicago.  Megan is determined to end this disease, but she can’t do it alone.  We all need to realize that our kids deserve better.  I long for the day when I never have to learn of another parent hearing the life-changing news that their child has cancer.  We can do better!!!

Until next week…

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The Moment of Truth

Here’s the thing about childhood cancer.  After hearing the devastating news that she had cancer, Megan spent the next 54 weeks fighting with everything she had to beat down the disease.  During those 54 weeks, she had over 70 different chemotherapy infusions and about 70 radiation treatments that put her through a torture most adults could never imagine.  She threw up more times than I could ever count.  She endured painful nerve damage to her calves and feet, along with neuropathy in her fingers and toes that often brought her to tears.  She had constant digestive issues (including c-diff), hormone damage, bone and joint pain, heart damage, shortness of breath, multiple infections (one of which nearly took her life)…and those are just some of the physical side effects.  The mental battle can sometimes be so much more difficult for a teenage girl who was looking forward to starting her high school career.  However, after those 54 agonizing weeks, Megan was declared cancer free and the celebration was on, but at that point, we were still pretty new at this.  Although Megan had won the battle, we had no idea that the war was far from over.

Since Megan’s initial triumph, she has now relapsed three times.  As a result, she has gone through 36 more weeks of chemotherapy, four more rounds of radiation (for a total of over 120 radiation treatments), a surgery, and the accompanying side effects all over again.  But the worst part of the entire process are those awful scans.  There is nothing all that physically taxing about getting a PET, CT or MRI (even though Megan has to be under anesthesia to tolerate the long brain MRI’s).  Instead, it’s the intense mental anguish that accompanies these scans, which cancer survivors commonly call “scanxiety”.  I now know that it’s not just the cancer patient who suffers from scanxiety, because it definitely impacts the entire family.  During remission, Megan would undergo these scans every three months, and it’s an awful process.  Deb and I would always do our best to keep Megan busy in the days leading up to her scans, because when her mind is idle, that’s when the darkness and fear creeps in.  We would also try and downplay Megan’s scans with Kenzi so she would not become too anxious herself…especially after she went away to college.  And of course, Deb and I would always do our best to put on our happy faces and let Megan know that everything was going to be okay.  Although we really did always think positive and believed that Megan’s scans would come back clean, there is always that ever-present fear in the back of our minds that is hard to completely ignore.  Yes…scanxiety is very real, and it is so awful…but that’s where we are again.

Tomorrow morning, Megan has to be at the Northwestern Cancer Center in Warrenville at 7:15 a.m. for her PET scan, and then we go to CDH for her bloodwork and CT scan.  These are the scans that will determine if her proton radiations treatments were successful at eliminating the roughly 7 cm mass that was growing around her aorta.  Since Megan has exhausted all of her very limited chemotherapy options, the only two treatment alternatives for this tumor were surgery and/or proton radiation.  Her medical team determined that the location of her tumor made surgery far too risky, so they opted for her 6th round of radiation treatments.  In the past, radiation has been successful for Megan, so we are very hopeful that the trend continues with clean scans.  However, the days leading up to the scans, the day of the scans, and the awful wait for the results are an experience I wouldn’t wish on anyone.

If all goes well, we should have the CT results by Tuesday morning and the PET results by Tuesday late afternoon.  At that point, we will get a phone call from one of her oncologists explaining the results.  When my phone rings and I see the number is from CDH, my heart always feels like it’s going to jump out of my chest.  If her scans are clear…which is what we always expect…then she will most likely go back to the every three month scan schedule.  However, if her doctors find something concerning in the scans, we will be meeting with them on Thursday morning to discuss the plan of action.

Although the next few days will be brutal, we are going to continue following Megan’s lead and think positive.  Beating cancer is such a mental battle, and I firmly believe that the reason Megan is still here with us is because she has always believed she would win.  To this day, her belief has never wavered, and I know right now her belief is as strong as ever.  Although the medical odds have always been overwhelmingly stacked against her, it’s hard to account for courage, belief, and a positive attitude.  As Babe Ruth once said, “It’s hard to beat someone who refuses to quit.”

As I mentioned earlier, as she awaits her scans, the best thing for Megan is to keep her mind occupied and give her something to look forward to.  There are so many incredibly organizations that recognize this and provide these kids with positive experiences in their otherwise stressful lives.  One such organization is “Savvy Giving by Design”., which is an organization that comes in and completely renovates the bedrooms of these young cancer warriors.  Their goal is to give these kids an oasis from their constant mental and physical battles.  Early in Megan’s battle, she hooked up with Kasey Harvey from San Diego who served as an inspiration to her.  Kasey beat Stage 2 ARMS and is back to living her exciting teenage life in beautiful California.  We could not be more proud of her!  During Kasey’s treatment, “Savvy Giving by Design” came in and redid her bedroom.  Kasey’s mom said it was so meaningful to Kasey, so she kindly ended up hooking the organization up with Megan.  The process has been in the planning stages for quite some time, but the timing could not have been better as the team came to our house this week and completely redecorated Megan’s bedroom.  She was so excited!!!

Megan had been talking for some time about wanting to redecorate her room to more of an adult theme…because of course she is closing in on 18 🙂  She talked on the phone with Kira, who was the lead designer and gave her some ideas of things she liked, but then it was in Kira’s capable hands so Megan would be completely surprised.  They hired a local contractor, Kevin, who came in and repainted her room and completely renovated her closet.  Kira then followed with all of the new furniture and decorations.  The entire process took about three days, and during that time, Megan couldn’t look in her room.  On Friday, Megan was so excited for the big reveal.  From the look on her face, it was well worth the wait!!! I don’t know how to thank Kevin, Kira, Kasey Harvey’s mom, and everyone at “Savvy Giving by Design” for providing this much-needed respite for Megan.  She was so happy!!!

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Megan with designer Kira and the contractor Kevin.  Both of them were amazing!!!

Although this journey has been incredibly difficult, it has restored much of my faith in the goodness of humanity.  Too often, we are all focused on the negative influences that are out there and we let them dominate our time and energy.  However, Megan’s Journey has taught our family that there are so many good, kind and generous people out there who just want to help those in need.  I firmly believe that the good in people far outweighs the bad…and Kira and Kevin are just two of the many examples of this that we have encountered along our arduous path.

Although Megan has been thrilled with her new room, today has still been a little rough on her.  When things get too mentally taxing, Megan tends to curl up on the couch with her kitten and catch a nap just to get away from it all.  That kitten has been such good therapy for Megan.  I guess Kenzi knew exactly what she was doing when she got Megan that kitten as a Christmas present two years ago 🙂

Tomorrow is a very big day in Megan’s recovery effort.  We need all of Team Megan to send positive thoughts at 7:30 a.m. and then again at 11:20 a.m. as Megan goes through her PET and CT scans.  Although the war is far from over, it’s time for Megan to win yet another battle.

Until next week…