Our Kids Deserve Better

Sometimes it takes a catastrophic event for us to sit back and reflect on what is really important in life.  That event happened for our family on December 26, 2014 when we were told that Megan had Stage 4 Alveolar Rhabdomyosarcoma.  Since we received that devastating news, we have learned some valuable lessons about life.  We have discovered that there is nothing more important than family.  We have learned the importance of living in the moment and winning each day as it comes.  We have learned the importance of not waiting for the storm to pass, but learning to dance in the rain.  We have also learned about the inherent good in so many kind and compassionate people who have reached out to support Megan during this arduous journey.  Megan’s cancer diagnosis is something that no child or family should ever have to endure, but the journey has caused us to re-prioritize our lives and focus on what is really important.  It’s too bad that it takes such an event for many of us to come to that realization.

Tragically, another of those catastrophic events occurred this week with the senseless deaths of 17 children in the Florida school shooting.  I don’t want to dwell on the politics of this issue, because it seems that everyone is doing that, which only leads to more divisiveness and no real solutions.  In trying to avoid the paralyzing politics, this tragedy caused me to reflect on the many areas of our society where we have to do better by our kids.  The lives of those 17 victims were invaluable and irreplaceable; just like the lives of the 1,800 children who die every single year from childhood cancer.  If we believe that children are our most valuable resource, and we believe that our children are our future, then we all have a responsibility to keep them safe from violence, disease, and any other danger to their well-being.  Our kids deserve more from the adults who are charged with protecting them.

As Megan has traveled her personal journey through cancer, she has become increasingly aware that our children are the forgotten victims of the disease.  While adult cancers receive the lion’s share of research funding by the Federal government, our kids are left with only 3.8% of that funding dedicated to researching the many forms of pediatric cancer.  That’s why our kids are being treated with chemo treatments that are over 20 years old.  It’s why many of the treatments our kids receive are actually adult treatments that were never intended for use on the fragile bodies of children.  Megan is tired of watching helplessly as her friends across the United States and the world continue to suffer and die due to a lack of effective and appropriate treatments.  Since she believes that the decision-makers are not looking out for her and her friends, she has decided to take matters into her own hands.  She has made it her passion to advocate for childhood cancer awareness and the desperate need for increased funding to support the research needed to develop new and effective treatments for childhood cancer.  Our kids have to stop dying!!!

Megan researched where she should focus her fundraising efforts, but she quickly became concerned about the administrative overhead that is inherent in many not-for-profit organizations.  She wanted 100% of the money she helped raise to go towards the direct research for cures for childhood cancer.  As a result of her research, she finally connected with Dr. Walterhouse at Luries Children’s Hospital in Chicago.  He is working on very promising gene research that could make a significant difference in the treatments for Alveloar Rhabdomyosarcoma and Ewings Sarcoma.  Megan has already delivered one check to him for $13,000, but she will not be satisfied until a cure is found and no more kids have to go through what she has endured.  Megan believes that no more children should live their lives under the terror of childhood cancer.

Today, Megan took another step forward in her fundraising efforts by setting up a “Circle of Friends” webpage through Luries Children’s Hospital.  Her personal page provides a safe and convenient online opportunity for supporters to donate money to her cause.  Each donation is fully tax deductible and 100% of each donation will go directly to support Dr. Walterhouse’s important research.  Megan is so excited to support childhood cancer research through her very own fundraising website.  I know she would appreciate anything her “Team Megan” supporters can do to help her end this nightmare for so many children.  In our country, 43 kids each day learn the devastating news that they have childhood cancer, and five children die each day from the disease, but if Megan has her way, that will soon change.  As Megan likes to say, “Together we can knock out childhood cancer”.  Here is a link to her Circle of Friends fundraising page.

http://foundation.luriechildrens.org/goto/teammegan

Even though Kenzi is away in Madison for the second semester of her freshman year at the University of Wisconsin, she and Megan still communicate everyday.  Kenzi sent Megan a Valentine’s Day gift, and even though she couldn’t be here in person, she FaceTimed Megan to give her the gift “in person”.  As you can see, Megan was pretty thrilled to get her own Bucky Badger stuffed animal 🙂

Kenzi also got me a ticket to a UW basketball game last week, and although it was a lot of driving in one evening, it was well worth spending an evening with her cheering the Badgers to an exciting victory over Purdue.  Here is a picture of us at the game and another where you can see the student section has stormed the court after the game.

Kenzi also recently took the initiative to apply for a job while at school, and she was quickly hired by Panera, which is also where her friend Ellyn works.  She had her first day of training this weekend, and will start working a couple days a week for the rest of the semester. Although we sure miss having Kenzi home with us, we could not be more proud of everything she is accomplishing in college.

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Megan continues to gain more strength and stamina the further she gets away from her last chemo treatment.  She has picked up two more classes at school, and is still going to musical rehearsal three to four times per week.  Tonight, she is going bowling and having a sleep-over with a couple of her friends, and last night she had the thrill of going to a ballet in Chicago with Kim Scerine, Jamie Frazier and Emma Frantini.  I’m not sure what Megan liked more, the ballet or all of the places they stopped for food 🙂  She was exhausted when she got home, but she said it was so much fun.  Here is a picture of Megan just before she left and another picture of the four of them at the ballet.

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The pace will continue to pick up for Megan as the musical is only three weeks away, but she is intent on making the most of each and every day.  As she recently posted on one of her social media outlets, she has scans in a month, but she is not going to let it worry her because if she did, she would miss out on a month of living life to the fullest.  Megan will never let cancer do that to her.  Once again, if you want to help Megan end the nightmare of childhood cancer for all kids, please visit her personal fundraising page at http://foundation.luriechildrens.org/goto/teammegan and help her “Knock Out Childhood Cancer”.  Our kids deserve the best future we can give them, and that means a life where they don’t have to worry about the nightmare of childhood cancer.

Until next week…

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Winning the Mental Battle

Throughout ‘Megan’s Journey”, she has taught us the importance of living one day at a time.  Cancer can be so overwhelming, and part of the reason is because it is extremely difficult not to look ahead and be fearful of the future.  The internet is a cancer patient’s worst nightmare, because all of the daunting statistics are only a Google search away.  I know Megan has researched her odds, as have we, and the resulting information is very hard to stomach.  Over the past three years, Megan has connected with other childhood cancer patients from all over the world.  Sure…there have been some amazing success stories like Kasey, Tyler, and others, but Megan has also experienced the heartache of friends who have fought so valiantly and yet lost their battles with cancer.  The passing of Mia shook Megan’s foundation, and the recent passing of young Isaiah was heartbreaking.  With all of the information on cancer that Megan has digested, it would be so easy to see how she could be completely paralyzed by what the future holds for her.  It would so easy for her to curl up in her bed everyday asking “Why me?”.  It would be so easy for her to be bitter and resentful at the world for making her play the hand she has been dealt.  It would be understandable for her to just give in and let cancer have its way with her.  Unfortunately, this is what cancer is counting on when it invades the lives of its victims. It fully expects to overwhelm its opponents not just physically, but mentally as well, and as soon as cancer wins the mental battle, it has essentially won the war.  The key to Megan’s three year battle with cancer is that she has refused to let that happen.  She has never let cancer win the mental battle, because no matter how tough things have gotten…and there have been some really trying times…Megan has never stopped believing in her recovery.  She has never stopped believing that no matter how long it takes, she will stand victorious at the end of the day.

One of the keys to Megan’s incredible mental toughness and positive outlook has been her ability to focus on winning each day as it comes.  She has the uncanny skill of not worrying about tomorrow until tomorrow arrives.  Given the stakes, I really don’t know how she does it.  Recently, she has once again put that skill on display as she sets the example for the rest of our family to follow.

Megan completed her last 36 week chemo protocol in mid-October of 2017, which was aimed at addressing her relapse that occurred when doctors discovered a cancerous tumor in her left breast.  At the end of that treatment, she was scanned and unfortunately two small tumors showed up near the spinal cord in her lower back.  Her medical team decided to treat those tumors with yet another round of proton radiation, which Megan completed in mid-January of this year.

This past Thursday, Megan went to the CDH clinic for the first time since she completed her radiation treatment.  When we got there, Megan shared lots of hugs and laughs with the amazing medical professionals that have become such an important part of our family.  Nurse Suzy accessed Megan’s port, because every time Megan goes to the clinic, they check her blood counts.  Fortunately, Dr. Salvi said her counts all looked good.  He also conducted a thorough physical exam where he feels various points on her body to check for any tumors.  Once again, he said he did not feel anything and she looked great.  Although that was all great news, we all know that the real proof is in the scans.  Dr. Salvi said he wanted to wait until early March for her scans, because he wanted to give her back time to recover from the proton radiation treatments. Megan asked if she could get the scans right after her musical weekend, which ends on Sunday, March 11.  Dr. Salvi agreed…so now we wait.

Megan knows full well the high stakes of these upcoming scans, but as soon as she heard the scans would not happen until the week of March 12, she was moving on.  She immediately started joking around with Nurse Kathy, and she spent time talking with Allie, who is the Child-Life Specialist.  On the way home, she wanted to go through a drive through and grab some lunch because she was in a hurry to get back to her class at the high school.  She was making weekend plans with her friends, and she even started talking to me about where she wanted to go to college!  She was living in the moment, because she was not about to give cancer the pleasure of making her live in fear of her upcoming scans.  Until the day of her scans, I am convinced she will make the most of each day.  She will live one day at a time, and she will not worry about tomorrow until it gets here.  Cancer has to be getting so frustrated with her!!!

This weekend, Megan’s baking addiction returned as she was really wanting to use a donut baking pan that she got recently.  She found a recipe for blueberry donuts with a lemon glaze, and as the designated taste tester (I happily volunteered), I can tell you they were awesome.  Here she is with the finished product.

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After that, she found a bag of Valentine Day M&M’s in our pantry, so she set about making some yummy cookies.  Once again, as the taste tester, I gave them my enthusiastic approval!

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Megan has musical rehearsal tonight from 5:30-8:30 p.m., but before she headed off to rehearsal, she had three of her friends come over to hang out with her for a couple hours.  They went down to the basement for a big ping pong extravaganza, ate some pizza, and then happily headed out to rehearsal.  It is so good to see Megan recovering that “normal” teenage life that cancer keeps trying to steal away from her.

Now the challenge for the rest of us is to follow Megan’s lead and try not to worry about her upcoming scans until the time comes.  We will continue to focus on living each day to the fullest, and we will continue to cherish every moment our family spends together.  Cancer has a way of putting your life back in perspective, and reminding you of what is really important.

A Super Sunday

Megan continues the process of trying to once again pick up the pieces and regain her life after completing yet another round of proton radiation.  Over the past three years, Megan has been through 90 weeks of chemotherapy, over 100 proton and traditional radiation treatments, three surgeries, and so many awful side effects that are too numerous to mention in this post.  After completing this last series of proton radiation treatments to address yet another cancer relapse in her back, Megan is more motivated than ever to become a “normal” high school student.  She knows that she still has her scans coming in late February to determine if the proton radiation was successful, but she is not letting the “scanxiety” slow her down.  She is in a good place right now, and I have never seen her more determined.  I know she is drawing strength from other childhood cancer warriors like Mia, Isaiah, Ellie, Sophia, Tyler and so many others.  She continues to advocate for childhood cancer awareness and the severe lack of funding for effective research to eradicate this dreaded beast.  She is also determined to become an example to others and show them that even though they may have cancer, cancer doesn’t have to have them. You have to wake up every single day with the attitude that you will win, because if cancer senses any weakness, it will pounce.  In this battle, attitude is everything.

Megan continues to stay busy between school and rehearsing for the Coal City High School musical performance of “Les Miserables”, which opens on March 8.  Although she still tires easily, and is still experiencing discomfort from radiation in her back, she has not missed a day of school or a musical rehearsal.  In fact, I was surprised when I received a call from Megan’s school counselor on Thursday afternoon.  Megan has really not been a full time student since she was diagnosed as an 8th grader in January of 2015.  She has tried to pick up a class here and there as her health allowed, but she is far behind her peers in school.  Her focus has been on her health, because she always knew school would be there when she was ready.  Knowing that she had proton radiation treatments starting in early January, she only took two classes at CCHS this semester.  On Thursday, Megan took it upon herself to go see her school counselor and find out what she had to do to graduate with her class.  Her counselor reminded her that it would be a lot of work and the school did not want to stress her or cause unnecessary anxiety.  Megan insisted she wanted to do it, so we met on Friday to map out a plan.  Megan will be very busy over the next year and half, but it is her decision and she is motivated to make it happen.  Knowing what she has accomplished to date, I would never sell her short.  As long as her health allows it, she will make it happen.  I think it is yet another way for her to send a powerful message to cancer that she will not let it take her high school graduation away from her.  It also gives her another goal to focus on, which helps to keep her mind off the daily grind of fighting this ridiculous disease.

One of our family traditions is to hold a Super Bowl party that Uncle Todd and Gina always attend.  We kind of have an open door policy, so many times Kenzi and Megan’s friends will also stop by for some food and fun.  The girls and Uncle Todd usually collaborate on a theme, and then I get all of the food ready for the big event.  This year, the they decided on a Mexican theme, so we had chicken tinga, barbacoa, and all the fixings.  Of course, we also had way too many desserts including three kinds of ice cream, frosted brownies, dump cake, Gina’s famous peanut butter football cookies, and Megan even whipped up some awesome cake pops.

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Uncle Todd, Gina and the girls.
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Kenzi and Megan with some of their friends at the Super Bowl party.

All of the food and fellowship was fantastic, but the highlight of the event was having Kenzi home!  Kenzi’s winter break from the University of Wisconsin ended two weeks ago, but since we always have so much fun at our Super Bowl party, she planned to come home.  Since she doesn’t have class until noon on Monday, she can leave early in the morning and be back in time for all of her classes.  As an added bonus, she brought her friend Ellyn with her to stay with us for the weekend.  Kenzi met Ellyn on her dorm floor and they hit it off right away.  In fact, Ellyn is one of three other girls Kenzi will be living with in an apartment next year.  It’s funny because when Kenzi was describing Ellyn to us, she said that Ellyn and Megan were basically the same person 🙂  So obviously, Megan had a great time having both her sister and her alter ego with us for the weekend.

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Kenzi’s friend Ellyn with both girls.

Megan goes back to the CDH Clinic on Thursday morning for an appointment with her oncologist.  They will check her blood counts and give her a physical examination to check for any tumor growth.  We will then discuss when Megan’s scans will be scheduled, which will determine if the proton radiation did its job on her back.  It will be an anxious few weeks as we wait for the scans and the results, but I know Megan will not let the uncertainty dominate her life.  Instead, she will continue to live each day to the fullest.  She will continue to advocate for childhood cancer awareness.  She will continue to raise funds for and bring attention to the lack of funding for childhood cancer research.  She will continue to honor all victims of childhood cancer by bringing the fight to cancer instead of waiting for cancer to bring it to her.  She will continue to fight as she is determined to recover the normal teenage life cancer keeps trying to take from her.  She will never let cancer define her life.

Until next week…

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The Greater Good

After completing her latest proton radiation treatment aimed at eradicating the two tumors in her lower back, Megan continues to work at recapturing some sense of normalcy.  She is attending school every afternoon, and still participating in the musical rehearsals for the Coal City High School performance of “Les Mis”, which will take place on March 8-11.  Our high school also hosted the boys and girls conference basketball tournaments last week, and Megan went to watch the games with me every night.  She also was an active participant in a fundraising event for the musical, and she went to her job at the Broadway Dance Studio on Thursday night.  Although she is still fighting some of the residual effects of her recent radiations treatments, she is determined to regain that normal teenage life she has been desperately seeking since her diagnosis three years ago.  Even though Megan is fighting to regain her life, she has not forgotten her greatest passion, which is fighting to raise awareness and funding for all of the kids across the world who are fighting this battle with her.  Megan is so determined to help find a cure for this dreaded disease, and considering what she has accomplished to date, she just might do it.

Megan has spent many hours researching various cancer support organizations, but one of her frustrations has been learning how much of every dollar raised goes to administrative costs as opposed to directly benefiting childhood cancer research.  As a result, she has connected with Dr. Walterhouse at Luries Children’s Hospital in Chicago who is conducting some very promising research on childhood cancer.  After communicating with him, Megan has set up a way to directly fund his research.  By doing this, every single dollar she raises goes directly to support his research without any overhead costs.  On October 22, Megan delivered her first fundraising check directly to Dr. Walterhouse in the amount of $9,022.  She was so thrilled when Dr. Walterhouse informed her that her donation would fund six months of research in his lab!!!  Hearing that news only further motivated her to continue her efforts to help find a cure so that no more kids would have to go through what she has experienced during her three year battle.

Megan’s successes at raising awareness and funding for childhood cancer would not have been possible without the generous support of so many of her “Team Megan” followers.  Since childhood cancer only receives 3.8% of federal funding for cancer research, every single dollar raised is so valuable.  There have been other kids who have raised money and sent it to her.  At Christmas, a group of people donated to childhood cancer research instead of buying their usual gifts for one another.  Our local schools have conducted multiple fundraisers to help her cause.  Complete strangers have sent her checks made out to Luries Children’s Hospital in Megan’s name to help fund this important research.  It has really been humbling and amazing to see the outpouring of support and compassion for these amazing kids who are fighting for their lives.

A few months ago, one of the teachers at Megan’s school, Mrs. Malsky, reached out to us on behalf of the “Wish Upon A Star” Foundation in Joliet.  They are a fantastic organization that raises money to grant wishes to children impacted by cancer or other illnesses.  Mrs. Malsky said the organization wanted to do something for Megan.  Instead of using the wish for her own benefit, Megan decided to see if they would make a donation in her name to Dr. Walterhouse’s research.  On Saturday night, we attended the “Wish Upon a Star” annual fundraising event in Joliet where Megan was presented as their wish recipient.  At the beginning of their event, they called Megan up to the stage where she gave a moving speech to advocate for childhood cancer and thank the foundation for their donation.  Megan was shocked when they presented a check in her name to Luries Children’s Hospital in the amount of $5,000!!!  So many people came up to her after her speech to tell her how impressed they were that she would think of others instead of herself.  Here is a video of Megan’s acceptance speech and a couple pictures of the event.  We could not thank the “Wish Upon A Star” Foundation enough for the generous donation in Megan’s name to help fund childhood cancer research.

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Megan with Mrs. Malsky who helped to make this donation happen.
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Megan with Bob Bato, who is the Executive Director of the Joliet chapter of “Wish Upon a Star”.

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Megan has some other fundraising activities going on, because once she reaches $10,000, she will meet Dr. Walterhouse at Luries for a formal presentation.  As Dr. Walterhouse has told Megan, because childhood cancer research receives such limited funding when compared to other types of cancer (Don’t get me started on this topic…grrrrrr!!!), donations like Megan’s make a huge difference to the viability and continuation of childhood cancer research projects.  Maybe…just maybe…a cure is coming.  For the sake of our kids, we can only hope.

After her four week winter break, Kenzi went back to the University of Wisconsin last weekend.  The girls seemed to have gotten closer and closer while Kenzi was home, so her going back to school was a blow to Megan and our family.  Although we are so excited about Kenzi being in Madison at such a dynamic university, we definitely miss having her with us at home. Here is a picture of the sister hug that happened just before Kenzi headed out the door.

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Today is Kenzi’s 19th birthday.  I’m not sure where the time goes, but in the blink of an eye she has grown from a toddler to a young adult.  We could not be more proud of the person she has become.  Happy Birthday Kenzi!!!

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Sisters obviously know best, because Megan continues to get so much pleasure from her new kitten that Kenzi got for her.  Willow sleeps with Megan most every night, and she admits that the kitten has helped her with some of the anxiety she experiences as a childhood cancer survivor.  Kenzi knew just what Megan needed to help her through the rough times.  Speaking of the rough times, this week marked the one year anniversary of the tragic passing of Megan’s good friend Mia.  Mia was such an important part of Megan’s life, and it is so unfair that such a dynamic young lady fell victim to this dreaded disease.  Megan had a really rough time on the evening of the anniversary of Mia’s passing.  We have to do better for our kids!!!  Willow was sure helpful on that night.

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The battle continues…

The Third Handprint

On February 25, 2017, Megan’s cancer returned when a tumor was found in her left breast.  That tumor was surgically removed, but she still had to undergo a 36 week chemotherapy protocol, which when coupled with her original 54 week treatment, put her at 90 total weeks of chemotherapy.  During her relapse treatment, she also had another 24 proton radiation treatments on her left breast area, which put her at well over 100 total radiation treatments.  Her 36 week chemotherapy treatment ended in mid-October of this year, and in mid November she was given her scans to see if the chemo did its job.  Although her left breast area was clear, her MRI and PET scans showed two small tumors in her lower back, near her spinal cord.  After consulting with her doctors, it was determined that the best course of action was yet another round of proton radiation to treat the new tumors.  As we have grown accustomed to from Megan, she responded to this news with her usual warrior spirit.  Instead of being devastated and defeated by these new tumors and another round of treatment, Megan attacked it with her usual positive attitude and unbeatable spirit.  It’s the way Megan has approached the last three years, and I know in my heart it is why she is still with us today.  She just refuses to let cancer get the best of her.  No matter what happens, she flashes that infectious smile and tells cancer to bring it on.  As I have said so many times, Megan may have cancer, but cancer sure doesn’t have her.  In this battle, attitude is everything!!!

This past week was a big one for Megan because on Friday she completed her 10th and final day of proton treatment on her back.  Her previous proton radiation treatments have consisted of 30 and 24 days of radiation.  Due to the precarious locations of her previous tumors, her doctor had to treat her with smaller doses, which resulted in each treatment taking only about 15 minutes.  However, it also meant more days of treatment to attain the desired result.  This time, since her tumors were not located hear any vital organs, her doctor could hit her with a much more intense treatment.  This meant each treatment took about an hour, but she would complete the schedule in only ten days of radiation.

Megan’s treatment was scheduled at 6:30 a.m. each morning, which meant we had to leave the house at 5:15 a.m.  Although it was an early morning, it was kind of nice because since we were one of the first appointments of each day, we were only off schedule a couple of times.  Also, the early schedule allowed Megan to come home and sleep for about three hours before she went to school in the afternoon.  One of the side effects of radiation treatments is extreme fatigue, but throughout her ten days of treatment, Megan never missed her afternoon class at the high school.  She has also started rehearsal for the high school’s performance of the musical “Les Miserables”, which will take place in mid-March, and she made it to every rehearsal.  It would be so easy for her to use cancer as an excuse, but Megan is determined that cancer will not define her life.

Since Friday was Megan’s final day of treatment, everyone at the proton center made it a day of celebration for her.  Here she is ringing the bell to signify the end of her 3rd round of proton radiation treatment.

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Another tradition at the Northwestern Proton Center is to allow the pediatric patients to place their handprint on the wall upon the completion of their treatment.  Although I was so proud to see her complete yet another round of treatment, it was a little bittersweet to see her put her third handprint on that wall.  It just doesn’t seem fair for one child to have to go through so much to defeat this evil beast.  As readers of this blog know, Megan has become quite passionate about raising awareness and funding for childhood cancer research.  She is fighting not only for herself, but for other amazing kids fighting the beast like her good buddy little Ellie.

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In typical Megan fashion, she decided to use her third handprint as an opportunity to remind everyone to “Go Gold” in support of childhood cancer.  Our kids deserve so much better than our federal government currently provides for childhood cancer research.  It’s why our kids are currently being treated with medications that are over 20 years old.  Megan is determined to change that, and I have no doubt that she will make a difference.  Here are a few pictures of her finishing up her third handprint on the wall of the Northwestern Proton Center.

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Here she is placing her gold handprint on the wall.
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She decided to blow a little gold glitter on her handprint.
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Now she is writing her message to remind everyone to “Go Gold” in support of childhood cancer.  You can see her handprint from her second round of radiation in the upper right hand corner of this picture.
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Showing off the final product.

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Megan with Aileen, who is the Child Life Specialist at the proton center. Megan loves her!!!
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I could not be more proud of this girl!!!

Megan’s radiologist said that one of the side effects of this particular proton radiation treatment would be irritation to her bowels.  Unfortunately, Megan has been dealing with that, and it got pretty rough for her tonight.  We are hopeful this doesn’t last too long, because the girl has been through more than enough.  Megan’s next appointment with her oncologist is February 9.  At that time, they will determine when to complete her next set of scans to see if the proton radiation did its job.  We expect those scans to take place sometime in late February.  Cancer really stinks!!!

After celebrating the end of Megan’s radiation treatments, we continued our celebration with our family.  Kenzi was still home this week because the University of Wisconsin does not start classes again until January 23.  Since her 19th birthday is on January 28, we decided to celebrate early and often 🙂  Here are a few pictures from our birthday celebration.

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On Monday, we went shopping in Naperville and then went to eat at BD’s Mongolian Grill, which is one of Kenzi’s favorite restaurants. Here she is enjoying her birthday dessert.
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Megan gave Kenzi her birthday presents this morning.
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Today we went to Uncle Julio’s, which is Kenzi’s favorite Mexican restaurant. She is getting ready to open a present from her mom and me.

We all enjoyed the chocolate pinata we got for Kenzi’s birthday dessert.

On Saturday, Deb and the girls hosted a baby shower for our niece Emily, who is expecting in late March.  To prepare for the party, the girls called Aunt Tammie to help them make some awesome cupcakes.  Here they are posing with the finished product.  Aunt Tammie is the best!!!

Kenzi heads back to Wisconsin tomorrow to start the second semester of her freshman year.  We are so proud of everything she has accomplished, and we are happy she has found such a great home at UW, but we will sure miss her.  Megan has loved having her sister around for the past month, so it will be an adjustment for all of us as she heads back to school. #gobadgers

Now that Megan has completed yet another round of treatment, she will once again set about trying to recover the life cancer keeps trying to take from her.  She will go to school, attend musical practice, go to work at the dance studio, and reconnect with friends. Cancer can keep trying, but it will not beat Megan.  She will continue to persevere in the face of adversity.  We could all learn a lesson from how Megan attacks life.  Until next week…

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“No Child Deserves to Have Cancer”

After we returned from Hawaii last week, things quickly got back to what is normal for a child fighting cancer.  Vacations and other special events are such necessary diversions for a pediatric cancer patient, because without them, their lives are absolutely consumed 24/7 with fighting their disease.  The battle permeates every social, mental and physical aspect of their lives, because there is just no relief from the omnipresence of cancer’s evil grasp.  All of us have a certain amount of stress in our lives, but there are very few of us who can understand the level of anxiety caused by battling this dreaded disease.  Megan thinks about cancer when she wakes up in the morning; it cripples her thoughts throughout the day, and it is the last thing she thinks about before she goes to bed it night hoping it doesn’t haunt her dreams.  Megan’s infectious smile hides it well, and her positive attitude is the stuff of legends, but make no mistake…this battle is so taxing on every fiber of her being.  Spending six days in Hawaii allowed her a much needed respite from the daily grind, but when she got home, the battle awaited.

Megan got her wake-up call at 5:00 a.m. on Monday morning as she had to be at the proton radiation center in Warrenville in time for a 6:30 a.m. appointment.  During her previous over 100 radiation treatments, they have been very quick…usually taking 20 minutes or less.  However, because they are treating the two tumors in her back with a shorter, but much more aggressive dose of radiation, her current treatments take about an hour.  She has to lay in a very uncomfortable position, which puts direct pressure on the area of her left breast where she had surgery to remove a previous tumor.  Although it is painful for her, she has to lay perfectly still because if she moves at all, the proton radiation will miss its mark.  She had five treatment this past week, and she will receive five more this week, which means the treatment will be over on Friday, January 19.

So far, Megan has handled the intense proton radiation treatments pretty well.  Although she is very uncomfortable during the process, the radiation techs do an excellent job of trying to keep her mind off of the discomfort.  When she completes her one hour treatment, she is exhausted.  A side effect of these treatments fatigue, and when that is coupled with her extra early wake-up call, Megan ends up sleeping for about three hours when she gets home.  The timing works out pretty well, because after she wakes up, she has lunch and then heads off to school for her afternoon class.  Given the fact that Megan is still undergoing treatment, she is on a very limited school schedule.  She has also started musical rehearsals at the high school as she has landed a part in their upcoming performance of “Les Miserables”.  Megan loves the theater, so even thought she is pretty worn out, she still enjoys going to rehearsals.  The theater is another outlet where for a couple hours, she can forget she is fighting cancer.

After her radiation treatment on Friday, Megan had an appointment at the CDH clinic for her weekly check-up and exam.  We found out that after her treatment ends, they will wait about a month and a half before scanning her again.  Let’s hope this proton radiation does its magic and her scans come back with no evidence of disease (NED).

As Megan continues in her own personal fight, her passion has become raising awareness for childhood cancer and advocating for all kids who are fighting the same battle as her.  To date, Megan’s various partnerships and fundraising efforts have netted over $50,000 for childhood cancer research.  She continues to actively support Dr. Walterhouse’s research at Luries Children’s Hospital in Chicago where he is conducting some very promising research on childhood cancer treatments.  Megan has raised over $15,000 to directly support his research efforts.  Megan also reaches out to other childhood cancer patients all over the world to lend her support and encourage them in their personal battles.  She is so motivated to end this awful disease, but to do so, she needs help.  There has to be more of a focus on childhood cancer research by the Federal government.  Currently, Megan is painfully aware that only 3.8% of Federal funding for cancer research is dedicated to researching pediatric cancer.  It seems so insane to think that society does not place more of a premium on our most valuable resource…our children.  Amazing kids like Mia, Sarah, and Isaiah were worth far more than 3.8%.  Kids like little Ellie, Sophia, Sophia from Australia, Tyler, Ellie from England, Olivia, and so many more are worth so much more than 3.8%.  We have to do better, and Megan is determined to make sure that we do.  Here is the post she put on her facebook page today.

Cancer is a horrible disease. It’s goal is to eventually take over your body and your life. As a kid, like me, who has childhood cancer it’s harder for our bodies to fight off this disease. The only way to make it easier is with better treatments. Yet, we get 3.8% of all cancer funds?! How is a child supposed to enjoy life as a kid? How is a child going to grow up and go to college? How is a child going to get married and have a family? Some won’t. The reasoning behind that is because lack of funding. All cancer is awful, but children deserve better care and treatment from the world. A child is not supposed to have bags and bags of chemo. They are also not ready to have multiple rounds of radiation. But I see it everyday at my hospital and it breaks my heart. NO child deserves to have cancer and NO child deserves to die from this. Please help me get the word around by sharing this post. And please contact me if you are looking for a place to donate. Together we will end childhood cancer!

Megan understands that everyone is not in a position to donate money to support childhood cancer.  However, everyone is in a position to make their voices heard by calling their local congressperson and letting he/she know that our kids are worth more than 3.8%.  Megan is determined to end this nightmare so other kids don’t have to go through what she has for the past three years.  With everyone on “Team Megan” helping, she just might get it done.

At the beginning of this post, I explained the importance of pediatric cancer patients having a diversion that takes them away from the mental and physical strife that accompanies fighting cancer.  Although vacations are a great remedy, such getaways are few and far between because the realities of life get in the way.  However, Megan’s pets are always there for her, and they have become the best possible therapy.  As readers of this blog know, Megan’s sister Kenzi recently surprised her with a new kitten as a late Christmas gift.  Kenzi knew that a kitten would help Megan through her proton radiation treatment and give her some comfort as she attacked this new phase of her recovery.  I guess sisters know best because Megan and that cat are inseparable.  Willow sleeps with Megan every night, and Megan says she is sleeping better than ever.  It is so comforting to open her bedroom door at night and see that little black kitten cuddled up right under Megan’s chin.  After watching the impact her pets have on her, I have become a firm believer in the power of therapy animals.  Megan and her menagerie are living proof.

One more week of proton radiation treatment to go.  Let’s hope for a good one.  Until next week…

Paradise Found

In last week’s post, I gave everyone a sneak peak at our family vacation to the Hawaiian island of Kauai.  The rest of the week did not disappoint as our family had such a good time together taking in all that the incredible island of Kauai has to offer.  The week was full of beautiful moments, and we savored each and every one of them.  It was just what our family needed prior to Megan starting her proton radiation treatment on Monday morning at 6:30 a.m.

Since Kauai is the most picturesque place I have ever visited, I figured the best way to share our experiences was through pictures.  So here goes…

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Our first four days were spent on the south side of the island at Poi’pu Beach. We were all amazed when three Monk seals came right up on shore to greet us. You can see one of them in the background of this picture.

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On New Years’ Eve, we went to eat at Duke’s Restaurant on the beach and then headed back to our condo to watch the fireworks over Poi’pu Beach.  It was an amazing sight!

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The girls on the balcony just before we left for our New Year’s Eve dinner.

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We had some free time one morning, so Kenzi went online and found a trail for us to hike, which led to a cave and a large sink hole that is now full of vegetation.  We had a little trouble finding it at first, but once we did, it was well worth the effort.

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Kenzi taking it all in 🙂
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We went on a whale watching charter where we saw humpback whales breaching. It was pretty cool!
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We decided to go zip lining early one morning. I’m not a big fan of heights, but it was a lot of fun to experience this with the girls. They had a blast!

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We went on a train tour of an old Hawaiian plantation, which was lots of fun.  The highlight for the girls was getting to feed the animals 🙂

We spent the last couple days on the north side of the island, where the girls got to see the famous Tunnels Beach.  Kenzi braved getting in the water and taking on the six foot waves, but they were a little too much for Megan and me 🙂  There was also a cave right across the street that we had to explore.

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We also went to the very end of the road on the north side of the island, which ends at Ke’e beach.

Another highlight of our adventure was an amazing helicopter tour across areas of Kauai that cannot be reached by car.  In fact, only about 20% of the island can be reached by car, which is one of the reasons it is a hiker’s paradise.  The waterfall pictured below was the one featured in the movie “Jurassic Park”.  It was pretty incredible to see it from above.

Our last activity before the long plane ride home was to go horseback riding.  We all had a blast!!!

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After a long and exhausting trip home, there was still one more surprise that Kenzi had planned for Megan.  When we were awaiting Megan’s bone marrow test results, Kenzi had to go back to the University of Wisconsin for her final exams.  She was really worried about Megan, so she wanted to do something special for her.  While she was away, she contacted someone in Coal City who had kittens.  Kenzi thought Megan needed something to take her mind off things, so she set everything up to give Megan a kitten as a late Christmas gift.  Kenzi was so excited, and the look on Megan’s face when she saw the little black furball was priceless!!!  Needless to say, Megan and her new kitten Willow are getting along famously.

Megan starts 10 days of proton radiation tomorrow morning.  Here’s hoping the treatment works its magic and gets rid of those two tumors in her back.  After all…there are many more beautiful moments to come in 2018.  Megan found this sign outside of a store in Kauai, and I think it says it all.

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