One More Week of Peace

It’s been almost two months since Megan completed her final proton radiation treatment to address the tumor in her chest.  Although her doctors cannot be absolutely sure without a biopsy, given Megan’s history, they are almost certain that the mass in her chest is a third relapse of her Alveolar Rhabdomyosarcoma.  Due to the limited number of treatment options available for childhood cancer, Megan’s research-based chemotherapy options have been exhausted.  Therefore, her doctors are attempting to manage this latest relapse with proton radiation, which has been effective for Megan in the past.  It’s so hard to hear that your child is out of treatment options, but this is the reality many childhood cancer patients face due to a severe lack of funding along with a lack of national focus on childhood cancer.  This is why Megan is still fighting so hard to raise awareness and funding for new and improved treatment options.  As she so often says, she will not rest until no more kids have to experience what she has been through.

Megan’s last scan, which was about three months ago, showed that the tumor in her chest was starting to wrap itself around her aorta.  Until that time, her doctors had been monitoring the mass, but once it started to grow around her aorta, they said it was time to take action.  Megan has been finished with her radiation treatment for about two months, but she couldn’t have a scan during that time because the inflammation caused by the radiation could have resulted in a false positive scan reading.  Instead, Megan got a two month reprieve while she waited for her body to heal from the harsh radiation treatments.  Although Megan has been feeling very good over the past two months, I know the waiting is taking its toll on her mental state.  The waiting also takes a toll on our family as we anxiously hope that the proton radiation did its job and that the upcoming scans show that her body is healthy.  Her CT and PET scans are set for the morning of March 11, so Megan has one more week of peace before the awful “scanxiety” sets in.

I continue to marvel at how adept Megan is at living in the moment.  Given all that is at stake for her, it would be perfectly understandable for her to be severely struggling, but she simply refuses to give cancer that pleasure.  Instead, Megan continues to do her best to enjoy each day to the fullest.  As I have mentioned in previous posts, she has completed all of her high school coursework through a special program at Joliet Junior College, which has allowed her some down time to focus on her mental and physical health.  Although she has stayed busy with babysitting for a couple families and working at the dance studio twice a week, she has still been leading a much more relaxed lifestyle than she was forced to endure over the past four-plus years.  It seems like every time I see her she is smiling, laughing or singing., which always brings a smile to my face.  When you have seen your child in pain so many times over the past four years, you treasure the good times such as this.  It’s remarkable how positive Megan remains in the face of such daunting adversity.  So many of us could stand to adopt her positive outlook on life.

As everyone knows, Megan is continuing to work hard at raising money to support Dr. Walterhouse’s research at Luries Children’s Hospital in Chicago.  Due to the severe lack of Federal funding coupled with the big pharmaceutical companies ignoring them, childhood cancer patients and their families have been forced to raise their own funds to support potential treatments that could save these kids.  It’s really a sad state of affairs, but instead of sitting around feeling sorry for themselves, Megan and her friends have decided to take matters into their own hands.  Thanks to the incredible generosity shown by so many people and organizations, Megan has now raised over $157,000 to support childhood cancer research!!!  Her second partnership with Ivory Ella, where she designed a second set of childhood cancer awareness products, resulted in the company making a donation of $15,000 to her cause.  Megan’s goal is to reach $200,000, and she is creeping closer and closer to her aim.  If you are interested in supporting her efforts, you can still donate to her Circle of Friends fundraising page through Luries Children’s Hospital.  I know she is so appreciative of everyone who has been supporting her efforts to end childhood cancer.

Speaking of Megan’s fundraising efforts, she just received a very nice letter from the Ann & Robert H. Lurie Children’s Hospital of Chicago Foundation.  Lurie’s just completed the construction of a new facility that will house it’s Stanley Manne Children’s Research Institute.  The new facility is going to have a wall to recognize everyone who has contributed $100,000 or more to support research at the Manne Research Institute, which Megan has.  As a result, “Team Megan Bugg” will be listed on this new donor wall, which is a tribute to everyone who has been supporting Megan’s mission to end childhood cancer.  Thank you to everyone, because this recognition is for all of you.  As Megan said in her speech a the Cal’s Angels Gala last week, “Mark my words…a change is coming!”  It is because of the efforts of brave cancer warriors like Megan, her cancer fighting friends, and all of you generous people that childhood cancer will be defeated.  It will be a glorious day when no more kids and no more families have to hear the words that stunned parents across the world hear every two minutes…”Your child has cancer.”

In the face of adversity, fear and doubt, Megan usually remains incredibly positive, but this next week and half will be a challenge for her.  She will be anxiously awaiting her scans on March 11…and then comes the agony of waiting for the results.  “Scanxiety” is real and it is awful…just ask any cancer survivor if you don’t believe me.  Luckily, Megan has an exciting week planned…but I won’t ruin that surprise before next week’s post.  In the meantime, whenever Megan starts to feel a little anxious or stressed, her beloved pets are always there for her.

Until next week…

Megan’s Truth

As I sat down to write tonight’s post, I had so much to say.  Yesterday, our family had the privilege of attending the annual Cal’s Angels “Got Hope Gala” where Megan was honored as the featured speaker.  Her charge was to motivate the 1000 guests in attendance to donate as much money as possible during the live auction that immediately followed her speech.  As Megan prepared the message she wanted to send, she was adamant that her speech be not just about her story, but about ALL of the kids across the country and the world who are fighting against the evil that is childhood cancer.  Megan’s story is touching because she has been through so much physical and mental trauma to get to where she is today, and she easily could have spent her entire speech on her own personal journey.  However, Megan has become about so much more than her own journey.  She and so many of her brave cancer fighting friends have become powerful voices advocating for a change so that no more kids have to go through what they have experienced.  I have learned so much from Megan and I have so much I could share with you…but I definitely could not tell the story nearly as eloquently and powerfully as Megan does in her own words.  Here is Megan’s speech from last night’s event.  It’s about 15 minutes in length, but I encourage you to hear her entire message because it paints a vivid picture of the urgent crisis that childhood cancer has been and continues to be in our country.  Give her 15 minutes of your time and then try and tell me that our kids don’t deserve better.

Last night was such a powerful evening not only because of Megan’s message, but because of the many families in attendance whose lives have been forever changed by childhood cancer.  It was also special because of the love, support and generosity shown by those in attendance.  Also, last night would not have been possible with Stacy Sutter and her wonderful staff that make up the powerful childhood cancer advocacy organization that is Cal’s Angels.  Finally, what made the evening extra special were the family and friends who came to support Megan and our family.  Kim Scerine and Emma Frantini from Broadway Dance Studio where Megan works even came to the event in support of Megan.  Kenzi was even able to make the trip back from Madison, Wisconsin for the night just to come and support her sister.  It was an incredible and powerful evening.  Here are some of the pictures.

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Our table of 10 family and friends.
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Megan was so happy that Kenzi came to support her on Saturday night.  During her speech, she made a special recognition of Kenzi and gave her a couple meaningful gifts to show her appreciation.
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Megan and her good friend Katelyn.
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Kenzi’s best friend from college, Ellyn, accompanied her on the trip all the way from Madison, Wisconsin to support our family.
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Megan met some other childhood cancer warriors like Maddie.
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Megan met Maddie’s dad, Brad Beetham, who is on the Cal’s Angels Board of Directors. He gave Megan a special gift she is holding from the family of Tyler Trent.
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This is Hutch Hoepner who provided some amazing entertainment during dinner. He plays the keyboard, harmonica and sings. He is really awesome!!!
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Megan giving her passionate speech in front of 1000 people.

On Monday, February 18, Megan had her monthly check-up at CDH. All of her bloodwork came back perfect and Dr. Kar said he could not feel any abnormalities on her body.  All of that was great news! Megan is anxiously awaiting her PET and CT scans on March 11, which will check the status of the 7 centimeter tumor that was wrapped around her aorta.  Because Megan has exhausted all of her limited chemotherapy options, she had to rely on radiation to attack this latest tumor.  The scans on March 11 will tell us if the proton radiation treatments were successful.  In the meantime, Megan is focused on living each day to the fullest.

Cancer is a formidable foe, but it has met its match this time.  Not only is Megan more determined than ever to win her own personal battle, but she will not rest until she takes childhood cancer down for good.  Who’s ready to join in the battle?

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Did You Know?

Today, 43 more kids found out that they have childhood cancer.  On December 26, 2014, Megan’s pediatrician told us she was sure Megan had some form of childhood cancer.  On December 30 of that year, we learned that Megan had Stage 4 Alveolar Rhabdomyosarcoma (ARMS), which is a very aggressive soft tissue cancer with dismal survival rates at Stage 4.  At that point in our lives, we were like most people in that we didn’t know much about childhood cancer.  Sure, we saw the ads for St. Judes on television with the cute, smiling little bald kids, but it didn’t mean much to us at the time.  We knew about breast cancer because every October it seemed that everything turned pink to raise well-deserved awareness for that cause.  I knew about prostate cancer just because my dad had gone through successful radiation treatments just about a year earlier.  So I knew a little about cancer, but I had never even heard of ARMS.  I also hadn’t heard of Ewings Sarcoma, Osteosarcoma, Wilms Tumor, Neuroblastoma, Hodgkins and Non-Hodgins Lymphoma, Diffuse Intrinsic Pontine Glioma (DIPG) and all of the other 13 types of childhood cancer.  Once we heard the devastating news about Megan’s diagnosis, I also had no idea that 42 other parents across the country had heard the same news Deb and I did that fateful day.  Up until that point in my life, I was oblivious to the issues surrounding childhood cancer because it didn’t impact me.  I’m embarrassed to admit that, but I don’t think I am alone in that regard.  However, if we are going to solve the nightmare that is childhood cancer before another 1,500 kids die this year, and another 1,500 the next, and so on…then we all have to become a voice for these kids.  How many of you knew that February 15 was International Childhood Cancer Awareness Day?  That is exactly what Megan and her friends are advocating for.  They want everyone to realize that childhood cancer is a true national tragedy and something has to be done.  If they have their way, next year everyone will know the important of February 15.

Megan asked me to be sure and thank all of the kind “Team Megan” supporters who responded to her Facebook post about International Childhood Cancer Awareness Day by donating to her Circle of Friends fundraising efforts.  Thanks to your support, Megan has now raised over $142,000 to support the important research being conducted by Dr. Walterhouse at Luries Children’s Hospital in Chicago.  He is conducting promising research on ARMS and Ewings Sarcoma, so essentially, Megan is fundraising for the research that could possibly save her life.  How sad is it that in a country as scientifically advanced and wealthy as ours that we have childhood cancer patients who are actively fundraising to support clinical trials in an effort to save their own lives?  With a Federal budget of about $4.5 trillion, we only manage to allocate $192 million towards childhood cancer research.  Many of the amazing advances we have made in adult cancers have been funded by the large pharmaceutical companies in our country, but since they view childhood cancer as a less profitable venture, they do not dedicate funding to researching new treatments for our kids.  The combination of very little private pharmaceutical industry money and the extremely limited focus at the Federal level means funding for childhood cancer research is left to mostly private individuals like Megan and other not-for-profit support organizations like Cal’s Angels.

Megan is anxiously looking forward to giving the keynote speech at this coming Saturday’s “Cal’s Angels Fundraiser” in St. Charles.  Last year, the event raised over $820,000 to support kids with childhood cancer!!!  This year Megan is hoping for even more!!!  There will be over 1000 people at this black tie fundraiser.  This weekend, we all met the Director and Co-Founder of Cal’s Angels, Stacey Sutter.  Stacy is an amazing person who after tragically losing her son, Cal, to childhood cancer decided to carry on her son’s legacy by dedicating her life to supporting kids and families of childhood cancer.  In 10 short years, she has built Cal’s Angels into a powerhouse organization that not only grants wishes to childhood cancer patients, but also funds childhood cancer clinical trials, and aggressively advocates for childhood cancer awareness.  Megan is so honored to get the opportunity to speak at such an incredible event.  She is hopeful that her message will not only motivate more fundraising for the organization, but will also raise awareness for childhood cancer.  Every time Megan speaks, she is motivated by her friends past and present who are in this fight with her.  I know she won’t rest until no more kids have to go through the nightmare that she has experienced over the past four years.

Since Monday is a holiday for our schools, we took the opportunity to make the drive to Madison, Wisconsin for a short visit with Kenzi.  She has settles in so well at the University of Wisconsin.  She loves the campus, the city, and is really enjoying her classes.  Last year, she declared her major in Communicative Science and Disorders (CSD) with the goal of becoming a speech pathologist.  I think seeing all that Megan has gone through has motivated her to work with kids.  Right now, she sees herself working as a speech pathologist helping kids in either a school or hospital setting.  She currently has a job in Madison where she works as a Speech Pathology Aid three evenings a week alongside a practicing Speech Pathologist who has a private practice.  She is also working with one of her CSD professors in his lab three days a week doing language analysis work.  Between her classes and work, she stays very busy, but because she is doing something she loves, the weeks go very quickly for her.  It was so good to go for lunch with her this weekend.  One of Kenzi’s birthday gifts did not get here for her birthday, so we were all anxious to give her present to her this weekend.  Kenzi loves the Badger football games, and her favorite player is TJ Edwards.  She was pretty excited when she opened the new jersey we got for her.

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After lunch, we all went to Target to restock Kenzi’s apartment with food and supplies.  Here’s a picture of Megan and Kenzi at the store.

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Megan is still making the most of her down time before she has to go back for scans on March 11.  On Monday, she goes for her monthly appointment with Dr. Hayani at CDH where she will get bloodwork and he will give her a thorough physical to check for tumors.  Megan has been feeling really good, so we are expecting Dr. Hayani to give her a clean bill of health.  Of course, we are all concerned about the March 11 scans, but when you are fighting this battle, you can’t look too far ahead.  You have to make the most of today and worry about tomorrow when it comes.  Megan has become a master at the skill of living in the moment.  There are days that I really don’t know how she does it.  When she does get a little stressed, one of her favorite stress relief activities is still baking.  This week, she made a huge batch of mini-cupcakes for Deb to take to her students and for Megan to take to the girls at the dance studio where she works.  That girl can bake a mean cupcake!!! 🙂

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And of course, her number one stress reliever is still her kitty, Willow (aka…Boo Boo Kitty).  When Megan needs to get away from it all for a bit, that cat is always right next to her.  The two of them really have an amazing connection.

Until next week…

 

It’s a Start…But Not Nearly Enough

As readers of this blog know, over the past couple years Megan has become an avid and outspoken advocate for childhood cancer.  She has been very clear that the issue of childhood cancer is much bigger than her, which is why she has become a voice for all kids past and present who have fought this vicious disease.  She is especially fighting for all of the healthy kids to make sure that they never have to experience the nightmare posed by this evil…and I believe preventable…disease.  As Megan has become an aggressive spokesperson on this issue, I have also spent considerable time researching this disease so I could better support her in her efforts.  The results continue to be very sobering.

What we have learned is that our country has failed our kids miserably when it comes to prioritizing childhood cancer.  The failure begins with the large pharmaceutical companies who do not view curing childhood cancer as a profitable venture.  It is true that childhood cancer represents only 1% of all cancers across our country.  As a result, the large pharmaceutical companies do not see investment in childhood cancer research has helpful to their bottom line, so they essentially ignore the issue.  This leaves the responsibility for funding pediatric cancer research to the Federal government, and unfortunately, they have not fared much better.  The entire budget of the National Cancer Institute usually is appropriated at about $5 billion per year.  Although some statistics vary, the general consensus is that they spend only $195 million on research that is focused specifically on the 13 types of childhood cancer.  This means that only about 4% of their budget is focused on childhood cancer.  You may hear politicians dispute that claim, but they are using fuzzy math, because when the National Cancer Institute researches adult cancers, they will often check to see if the treatment might be helpful with one of the childhood cancers.  Such an approach does not make childhood cancer the focus, but rather an afterthought when it comes to cancer research.  The $195 million number is the estimate that the NCI allocates for research specifically focused on childhood cancer.  The results of this utter failure are sadly, very predictable.

Since 1980, fewer than 10 drugs have been developed for use in children with cancer –-including those specifically for children and those for both children and adult–compared with hundreds of drugs that have been developed specifically for adults. Of those 10 new drugs, only three of them were approved specifically for children.  The rest were approved for adults and happened to be effective with some childhood cancers.  Furthermore, Megan was treated with many of the same drugs that were first developed in the 1970s.  It is sobering to realize that Megan is being treated with the same drugs that I would have been treated with when I was a child…and I am 51 years old!!!  Prostate cancer has an average age of diagnosis of 66 years old, and yet the NCI spend more on prostate cancer research than on all 13 types of childhood cancer combined…and the average age of diagnosis for pediatric cancer is only 6 years old.  The money spent on adult cancers by the NCI does not include the millions of dollars more that is invested by big pharmaceutical companies that is absent for childhood cancer.  I’ve heard it said that in terms of productive years of life saved, curing childhood cancer would be the equivalent of curing both breast and prostate cancer combined!!!

All types of cancer are terrible, and no one should ever have to fight this evil beast.  Megan always says that she is happy that the adult forms of cancer are receiving the funding attention they are…but she just wants to see childhood cancer placed on an equal playing field.  That’s why she is fighting so ardently to make a change…and she’s not the only one.  She has kid cancer warriors across the country who are in this fight with her and are making their voices heard.  They are no longer sitting on the sidelines waiting for the adults to take care of them, because that approach hasn’t worked.  Instead, they have decided to take matters into their own hands, and they do not take no for an answer.  These kids are passionate, motivated and determined, which is a tough combination to beat.  And from the sound of things last week, it seems that maybe…just maybe…our politicians are starting to take notice.

We were watching the State of the Union Address last week, which is an annual tradition for me.  During President Trump’s speech, he suddenly made mention of childhood cancer and the need for more Federal support to develop more effective treatments.  Megan was sitting next to me when he said it and we both looked at each other with a look of shock on our faces.  Megan rewound the video three times just to make sure she heard it right.  President Trump actually used a portion of his SOTU to specifically address childhood cancer!  He even had a childhood cancer survivor in the audience!  During his address, he called for $500 million in new Federal funding over the next 10 years to support childhood cancer research.  Although that figure is not nearly enough to put childhood cancer on a level playing field with the Federal dollars allocated towards adult cancer, it is a start.  However, much more important than the money, Megan is hopeful that by bringing up childhood cancer in his speech, that it will bring much needed national attention to the issue.  Much more needs to be done…but it’s a start!

Speaking of advocating for childhood cancer, Megan recently learned that she will be the keynote speaker for the annual Cal’s Angels Fundraising Gala.  Cal’s Angels is an amazing organization that provides wishes for kids who are fighting childhood cancer.  Since Megan received a wish from the organization, they asked her to give the keynote address.  The event is in St. Charles on February 23.  Megan has given short speeches on a few occasions, but this will be her first keynote address.  That night, she will be advocating for childhood cancer in front of 1000 people at a black tie event, so it should be a wonderful opportunity for her to not only support a great organization, but to raise more awareness for childhood cancer.

Megan’s next set of scans is scheduled for March 11.  Until that time, Megan has been using this down time to focus on her mental and physical health.  She also still finds time to bake, which of course makes us very happy!

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She also was able to meet up with one of her friends on Saturday night.  Caitlin Cannon is the daughter of two of the students that Deb and I taught at Reed-Custer High School back in my first year of teaching…way back in 1989!  It was good to catch up with Matt and Michelle Cannon, and Megan always has a great time with Caitlin.  Megan was also pretty happy that we decided to meet at Mod Pizza, which is one of her favorite places.

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This weekend, I was working on getting pictures together for the congratulatory ad that we are putting in the Coal City High School yearbook in honor of Megan’s senior year.  I ended up spending way more time than I expected, because once I started looking at old pictures, I couldn’t stop!  Luckily, Deb did a great job putting together photo albums from when the girls were little, so we have lots of old pictures.  Here were a couple of my favorites 🙂

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Until next week…

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The Gift of Family and Friends

As I’ve said many times before, going through a life changing event like watching your child fight Stage 4 cancer for the past four years causes you to change your outlook on life.  You no longer take life’s beautiful moments for granted.  You also treasure family and friends that much more.  As we just finished our annual Super Bowl get together, I now have a moment to reflect on the week, and what keeps coming to mind are those beautiful moments with family and friends.

Kenzi’s birthday kicked off this past week.  It’s so hard to believe that she is now 20 years old!  She was in Madison, WI for her birthday, but that didn’t stop us from FaceTiming her multiple times throughout the day to wish her a happy birthday.  Given all that our family has been through over the past four years, we could not be more proud of Kenzi and all that she has accomplished.  Sometimes, the forgotten victims of cancer are the siblings.  A sibling being forced to watch their sister or brother fight this dreaded disease is so hard, because oftentimes they really don’t know how to feel.  In these situations, the siblings tend to wander between feeling sorry for their brother/sister and feeling guilty about being healthy.  We are fortunate because Kenzi has been able to balance her life pretty well, and Megan has been supportive of her doing so.  When Megan was first diagnosed, Kenzi was a 15 year old sophomore in high school.  To think that she is now 20 and a sophomore at the University of Wisconsin accomplishing such great things is really incredible.  Happy Birthday Kenzi!!!

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Megan continues to be as motivated as ever to reclaim her life from cancer.  As I mentioned last week, now that she has finished her high school classes, she is working hard on her physical and mental health.  She has really been taking control of her diet as she has become a vegetarian and really watches the types of foods she is eating.  She is also spending time every day on the stationary bike and the treadmill.  This weekend, she walked for 30 minutes on the treadmill without stopping!  For many, that might not sound like much, but when you consider that even a year ago, walking 10 minutes was exhausting.  The incredible thing about Megan is that she never seems to feel sorry for herself, and given all that she has been through, she would definitely be entitled to such feelings.  Instead, Megan still wakes up with a smile on her face thankful that she is where she is in her life.  Her outlook on life is still so positive, which I firmly believe has been instrumental in her beating back cancer.  We could all take a lesson from her positivity.

This weekend was very exciting around our house because Kenzi and two of her best friends from college. Ellyn and Bridget, came home to stay with us this weekend.  Since she couldn’t be with us for her birthday on Monday, we waited until she came home for her birthday celebration.  On Friday night we all went to Kenzi’s favorite restaurant, Aodake in Romeoville.  We had such a good time, and the food was amazing.

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When we got home from the restaurant, we had a special funfetti cheesecake that Megan made for Kenzi by request.  It was awesome!!!

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Bridget, Kenzi and Ellyn
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Kenzi’s boyfriend Nick traveled home from Eureka College to be here for her birthday party.
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There is nothing like having the family together for the weekend!!!

On Saturday night, Kenzi and her friends Ellyn and Bridget went shopping in Joliet and then just hung out for the rest of the day.  That night, Makenna Emerson stopped over to give Kenzi her birthday present and then the crew had a big game night 🙂

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On Sunday, we had our traditional Super Bowl party with Uncle Todd, Gina, and Cousin Danny.  Of course, we always have a few other friends drop in and out, which makes for a very fun evening.  Since the actual game was pretty boring this year, the star of the show was the food.  This year, we had a taco/nacho bar, which really hit the spot.  Megan also made her special raspberry-filled white chocolate cupcakes, which are to die for!!!  Here she is getting them ready and with the final product.

A couple of Megan’s friends, Sophia and Madison stopped over before they had to leave for a choreography rehearsal for the upcoming high school musical production of Tuck Everlasting.

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Madison, Megan and Sophia

Also, here is a picture of the entire crew at the Super Bowl party.

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Kenzi and her friends are leaving at 6 a.m. Monday morning to make the three hour drive back to Madison in time for their classes.  We are so glad they were here for the weekend!

Megan seems to be getting stronger by the day as she continues to fight back with everything she’s got.  She doesn’t have to go back to CDH for a physical exam and blood test until February 18.  Following that, she will have a CT and PET scan on March 11 which will determine if the proton radiation did it’s job to treat the tumor in her chest.  The PET scan will also verify that she has no more cancerous activity in her body.  Until then, I know Megan is so determined to regain her strength and take back the life that cancer so unceremoniously tried to take from her.

When Megan started this battle on December 26, 2014, we all knew the odds were overwhelmingly against her.  Stage 4 ARMS is one of the toughest forms of childhood cancer, and one of the types of pediatric cancer that has seen very little success in terms of new and effective treatments.  I have written many time in this blog about the lack of funding for childhood cancer research, so I won’t belabor the point yet again…but when our country is experiencing the same survival rates for stage 4 ARMS that we did 50 years ago, something is very wrong!!! (I will have much more on this in a later post)  However, the odds never mattered to Megan, because if you ask her today, she will tell you that she always knew she was going to win.  Her determination and optimism have never wavered.  No matter how bad things got…and there were some very dark times…her confidence never diminished.  And over four years later, she is still fighting with the same ferocity she possessed on day one of this journey.  Sooner or later cancer is going to learn that you can’t beat someone who refuses to quit!

Until next week…

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Always Fighting Back

About three weeks ago, Megan completed her 14th proton radiation treatment to address her third relapse, which is a tumor in her chest that wrapped its way around her aorta.  Originally, she was schedules for six weeks of radiation, but her radiologist decided that they could hit her tumor with the proton beam from two different angles at each appointment.  This allowed her to finish her treatments in three weeks as opposed to six, which was a relief to Megan.  After completing this latest proton radiation protocol, she has now added well over 100 radiation treatments to her 90 weeks of chemotherapy.  Now she is in the waiting period as her doctors want her to wait two months before her next scans to make sure all of the swelling from the radiation subsides to avoid any false readings on the scans.  This week, we verified that she will receive a CT and PET scan on March 11.  Although the two month reprieve from treatment is welcome, one thing we have learned throughout this trying journey is that the fight Megan is waging doesn’t stop just because there is a break between treatments and scans.  We know all too well that the physical and mental battle never ends for these brave children who are fighting the evil that is pediatric cancer.

Megan’s body has been ravaged throughout her four year battle.  Due to a lack of Federal funding to support research into childhood cancer, the treatments available across the country are archaic and therefore extremely toxic.  After receiving 90 weeks of intense chemotherapy, Megan is now trying to focus on gaining some of the strength and stamina that has waned during treatment.  Ten minutes on the stationary bike is extremely taxing for her, as is 15 minutes of walking on the treadmill.  She is still fighting irritating digestive issues that have been caused by the nerve damage she experienced as a side effect of one of her chemotherapy drugs.  Although she has regained much of her mobility from her previous foot drop issue (once again caused by chemotherapy), she still fights to lift her toes when she walks.  She still suffers from back pain when she is standing too long and fights frequent headaches.  She also gets extremely tired at times during the day, which is when her kitten Willow comes over and shares an afternoon nap.

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Of course, after getting up early this past week to check the roads due to snow and ice, I guess I needed a nap as well 🙂

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However, as usual, all of these cancer-induced impediments are not stopping her from fighting back.  She has been using the stationary bike for 10-15 minutes per day and also walking on the treadmill for 10-15 minutes per day.  She has also started to incorporate stretching and core exercises into her routine in an effort to regain her physical strength and stamina.  She is also watching her diet closely.  Although the physical recovery is hard, it pales in comparison to the mental recovery that she is still fighting back against.

Unless you have experienced it yourself, none of us could ever understand the mental anguish and anxiety that a teenage cancer victim must endure.  Just think about this…Megan has recently completed the treatment for a seven centimeter tumor that is wrapped around her aorta.  However, she has absolutely no idea if the treatment was successful and she won’t know that until after her scans on March 11.  In the meantime, she is a 17 year old teenager getting ready to graduate from high school, but due to cancer, instead of thinking about what college she is going to attend, her mind is constantly preoccupied with not only the status of the tumor in her chest, but if the cancer is striking any other part of her body.  It’s easy for those of us on the outside to tell her to just forget about it and think about other things, but when you are a teenager and already thinking about your own mortality, it’s not that easy.  I find it amazing that she is even able to function each day with the anxiety and fear that she lives with on a daily basis.  Thankfully, she always has her family here to support her.  Even with her sister away at college, they can still communicate via Facetime when Megan needs a little pick me up.  She also has places like the Broadway Dance Studio where she works with such amazing people as Kim Scerine, Emma Frantini, and Jaime Frazier who are always there to support her.  She works on Wednesday and Thursday nights, and she always comes home from there like a different kid, because for those few hours she is able to put childhood cancer out of her mind.  She also has great friends like Katelyn Guthrie and Makenna Emerson who help to take her mind off of her fight.  Thankfully, she also has her social media colleagues from across the country and the world who truly understand what she is going through.  Teens who are fighting cancer can speak a language that none of us can even pretend to comprehend, and when Megan is really struggling, those are the people she reaches out to.  All of them are so courageous and understanding.  They have truly been a blessing in her life.  Once again, the mental battle is grueling, but Megan is fighting back with everything she’s got.

Now that Megan has completed her high school coursework, she has also been busy doing various chores around the house in addition to her physical workouts.  She also still finds time to bake once in a while, which makes her mom and I very happy 🙂

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I really cannot imagine anything more evil than childhood cancer.  Everyone knows how the disease ravages the body, but few understand the toll it takes on the mind.  These kids who fight back every single day with everything they’ve got are the bravest, most courageous people I have ever met.  It’s because of these kids that I have hope for the future.  Because the adults in power are not a voice for them, these kids continue to make their voices heard and advocate for a change in childhood cancer funding.  We cannot continue to accept the fact that our kids are being treated with chemotherapy drugs that are 30 years old and a bi-product of Agent Orange that was used as a military weapon in the Vietnam War.  We cannot continue to accept that the greatest country in the world has made NO progress over the last 50 YEARS in the survival rates of stage 4 Alveolar Rhabdomyosarcoma.  We cannot continue to accept that in 2019 1,500 more U.S. kids will lose their battles with cancer.  We cannot continue to accept that only 4% of Federal funding for cancer is dedicated to researching pediatric cancer.  These kids will not accept it and neither should we.  That’s why Megan continues to advocate to anyone who will listen to her.  It’s why she has raised over $140,000 to support the important and promising research being conducted by Dr. Walterhouse at Luries Children’s Hospital, and she is continuing this fundraising effort for anyone who would like to join in her efforts.  We have to follow the lead of these brave kids and make a change happen…not just for Megan, and not just for the kids who are currently in the fight…but to make sure that NO MORE kids have to go through this tortuous battle.  Until that glorious moment, we will just have to keep the faith and continue the fight.  That’s the hand Megan has been dealt, and since she can’t change the cards, she just has to change the way she plays them.  So far, my money’s on Megan!

Until next week…

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Taking it Slow and Easy

When your child is fighting cancer, one of the coping mechanisms you have to possess is the ability to take each day as it comes.  It is far too overwhelming to look ahead, because the future is just so uncertain and scary.  Instead, you learn to treasure each day and all of the little beautiful moments that present themselves.  When your child is fighting stage 4 cancer, it’s not about looking forward to graduating from high school; instead, you celebrate just feeling well enough to make it to school on that particular day.  It’s no longer looking forward to the next birthday; it’s about being thankful that she is not in treatment today.  It’s not about wondering what career she will have in the future, it’s about being thankful that we don’t have to worry about the results of another set of scans for another six weeks.  Over the past four years, our family has followed Megan’s lead and become much better about living in the moment and seeing each day as the blessing that it is.  However, now that Megan has defied all of the odds and is still fighting four long years later, some life decisions are all of the sudden upon her.  As she tends to set the example for us, we are once again trying not to worry and following her lead as she takes things slow and easy.

My wife and I are both educators, so we are strong believers in the value of an education.  When Megan was first diagnosed, there were so many thoughts that rushed through our minds.  First and foremost, we were focused on Megan’s treatment, but when she responded so quickly to treatment, I started to worry about her education.  As is customary, Megan straightened me out quickly by letting me know that her sole focus was on beating cancer and everything else was going to have to take a backseat until she won her battle.  As a result, we really were unconcerned about school for the first three years of her treatment.  Coal City Middle School and Coal City High School were both awesome about working with her, and they did their best to help her stay on track, but eventually the treatments and the resulting absences became too much to overcome.  Although she picked up a credit here and there, she was remained very far behind her peers.  As her senior year came, she all of the sudden started thinking about graduating with her class, but taking the traditional route of classes at CCHS was just not going to allow her to reach her goal.  Luckily, she got hooked up with a special program out of Joliet junior College that allowed her to take her classes at her own pace in the evening.  In typical Megan fashion, she got after it and last week celebrated the completion of her last class far ahead of schedule.  Now she has completed all of her requirements for graduation and will be graduating with her class come this may.  After her final class, we celebrating with a well-deserved strawberry milkshake from Steak-n-Shake 🙂

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Now that Megan has completed her classes, she has the rest of the semester to recover both physically and mentally as she starts to think about the rest of her life.  After the completion of her proton radiation treatments, she still has to get scanned in mid-March, so it is difficult to start anything too intense until she gets the results of these scans.  Megan’s body and mind have been so abused over the past four years that she also wants to focus on her physical and mental health.  As she explained in her recent Facebook post,

Now that I have finished high school I am taking things slow and easy. I am not taking any college classes right now as I am trying to focus on myself and my health both mentally and physically.

She is still working at the dance studio two nights a week, and she is also actively seeking out babysitting jobs.  Since she is available during the day, she is hoping that there are people who could use her services once or twice a week.  Megan loves little kids; especially babies, so if you know anyone who might need some help, be sure to comment on this post and Megan will get in touch with you.  I sincerely hope that cancer can give her a break long enough to let her enjoy this reprieve from the stress of treatment, school, and preparing for the rest of her life.  I’m pretty sure she deserves it.

Although we all really enjoyed having Kenzi home from college for the holidays, I think Megan was the happiest to have her home.  They hung out together most every day, which meant Megan was never really alone in the house.  They went shopping, out for coffee, watched movies, cooked together, and just generally enjoyed each other’s company.  However, Kenzi’s winter break couldn’t last forever so last Monday it was time for her to head back to Madison, WI.  Although she doesn’t start class until January 22, she needed to get back early for her new job and to take care of some things at school.  We are so proud of Kenzi and everything she is accomplishing at the University of Wisconsin, but we sure do miss having her at home with us.  The first thing Megan said after Kenzi left was, “Well, what am I supposed to do tomorrow morning?”  As always, Megan is adjusting quickly and they still Facetime each other everyday.  Here are a few pictures I took just before Kenzi headed out the door.

Last September, we took Megan to Curefest, which was a weekend in Washington, D.C. dedicated to raising awareness for the drastic need for increased funding for childhood cancer research.  Due to this lack of funding, our country has made zero progress in the last 50 years in the survival rates for Stage 4 Alveolar Rhabdomyosarcoma!!!  I have no idea how that is acceptable in a country as wealthy and advanced as ours.  While at Curefest, Megan met some amazing people and established some lasting friendships.  One such friendship was with an incredible young cancer survivor named Ava.  Ava and her sister Emma are both accomplished dancers who both performed on the Curefest stage.  Since Curefest, Megan, Ava and Emma have kept in touch and this weekend Megan stayed with them in Chicago as they competed in a dance competition.  Megan had a great time as she really enjoys hanging out with Ava and Emma, and she also loves dance.  here is a picture from her weekend in Chicago.

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Emma, Megan, Ava and another friend she met in Chicago.

As she awaits her next scans, Megan is continuing to work on her physical and mental health.  Cancer has been beating her down mercilessly for four years, so it is going to take time for her to recover.  Right now, ten minutes on the stationary bike seems like an eternity to her, but she is still doing it every day.  There are still those moments when the gravity of her situation takes a toll on her mentally.  However, with her hard work and determination, I’m sure her physical and mental health will improve by the day.  Like Megan said, the key is to be patient and take things slow and easy.  Cancer is a beast, but Megan is more determined than ever.  Cancer doesn’t stand a chance!!!

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