Somewhat Normal Feels Somewhat Strange

It was only a week ago that we received the great news about Megan’s latest scans.  Although she still has the single tumor in her chest, which represents her third relapse, her PET scan showed that there was no other cancerous activity in her body!!!  Other than a scan with No Evidence of Disease (NED), that was the best possible news we could have hoped for.  In fact, the PET scan showed that although the tumor in her chest had grown slightly, it actually showed less cancerous activity than before.  Her doctors were amazed by this, and after reviewing her case with their entire team, they decided to hold off on Megan’s scheduled proton radiation treatment for seven weeks.  She was supposed to start her 6th round of radiation on Monday, June 18, but the news of her last PET scan gave her a seven week reprieve!  On the one hand, that was fantastic news, because now we can actually have some normalcy over the summer.  We can plan a family vacation, hold a 4th of July party, and all of those other “normal” summer activities without worrying about Megan’s treatment.  However, as we were reminded of this week, cancer’s grasp is powerful.  Although Megan was so happy and relieved with her latest scan results, the fact that she still has a tumor and is receiving no treatment brings with it an anxiety and worry that only she can understand.  Undergoing the archaic treatments still used on children with cancer is awful, but living as a cancer survivor definitely has its own demons.  As unfair as it may be, the fact of the matter is that cancer will always be a part of Megan’s life.  Her “normal” and “normal” for the rest of us will be forever different.

Although Megan hated her chemo and radiation treatments, strangely enough her treatments brought her some much needed peace of mind.  Her cancer has always reacted to her chemo treatments, and each of her previous five rounds of radiation have been successful.  Therefore, while she is undergoing such brutal treatments, at least she knows that her cancer will not return.  Now that she will be away from treatment for the next seven weeks, cancer is starting to steer her mind to some dark places that bring with it anxiety and fear.  Megan tries everything to suppress any negative thoughts, and over the past three and a half years, she has become quite adept at positive thinking.  When her mind starts to race with negative cancer thoughts, she will play with her pets, text her peers from all over the world, or just lose herself in social media for a bit.  Understandably, there are times where the thoughts are so strong that her diversions don’t work.  That’s when her true emotions come out and we are all reminded that this teenage warrior of ours is actually human.  Although we were all thrilled with her latest scan results, Megan knows full well that even though the battle has been won, her war with cancer is far from over.

Sometimes I worry that Megan’s positive attitude and infectious smile make her fight look unrealistically easy…when it is anything but easy.  In fact, it is a mental and physical battle the likes of which none of us could ever imagine.  Cancer is a formidable foe, and even though there are times it gets the best of Megan, those times are few and far between.  Make no mistake…cancer is losing this battle!!!

There were a couple times this week when Megan’s emotions got the best of her, and when that happens, there is no better antidote than animals.  One particularly rough evening, Megan and I hopped in the car and headed to the pet store so she could play with the puppies.  As you can see…on this particular evening an Australian Shepherd brought back that smile we have all grown to love 🙂

And when a trip to the pet store is not in order, Megan always finds a sense of comfort in her kitten, Willow.  That kitten that Kenzi got her is the gift that keeps on giving!!!

Although Megan had a few rough moments this week, as always, the vast majority of the time she is still incredibly positive and optimistic.  This week we started talking about an academic plan that could potentially allow Megan to graduate with her class, which has always been a goal of hers.  She also started talking about college and what she wants to study.  She has always loved the entertainment industry, and she would love to find something in that field.  However, she also really wants to help other pediatric cancer patients who are going through what she has experienced.  She has been seriously talking about becoming a Child-Life Specialist and working in a pediatric cancer hospital.  I’m sure her own experiences coupled with her empathy and positivity would make this an ideal profession for her.  Wherever her future leads her, I know that her battle with cancer has only made her stronger and more determined than ever.  It’s just comforting to hear her talking about her future as opposed to her next chemo treatment 🙂

It’s been so nice having Kenzi home for the summer.  Although she has been extremely busy with two jobs and taking a summer school class, we have still found some time to do some things together as a family.  Today, we went to Naperville to see one of Kenzi’s CCHS classmates perform in the musical production of “Hairspray”.  Both girls love that musical, and to get to watch her friend Joey Fatigante perform in it was an added bonus.  The performance was wonderful and Joey did a great job.  Here is a picture of Deb and the girls before the show, and a picture of the girls with Joey after the show.

After the musical, we hustled to Portillo’s in Bolingbrook for a birthday party for Grandma Coope, who turned 80 years old.  It was fun to see family and to celebrate Grandma’s special day with her.  Of course, there is no better way to celebrate a birthday that with a piece of Portillo’s chocolate cake!!! 🙂  Here is a picture of our family with Grandpa and Grandma Coope.

Speaking of having Kenzi home…one of her summer jobs is at Nelly’s Restaurant in Wilmington.  The owners of the restaurant are wonderful people who have always been extremely supportive of Megan and our family throughout her journey.  They worked with Kenzi to organize a “Team Megan Day” on Tuesday, July 3.  On this special day, they will donate 10% of every order to Megan’s charity supporting the work of Dr. Walterhouse at Luries Children’s Hospital in Chicago!!!  Megan has raised over $85,000 to support Dr. Walterhouse’s research on pediatric sarcomas, and her goal is to get to $100,000.  She is committed to ending childhood cancer, and she is very excited that Nelly’s will be partnering with her on July 3.  Come on out to Nelly’s on Tuesday, July 3 and enjoy some awesome food while supporting Megan in her quest to end childhood cancer!!!

Given the pace of our lives for the past three and a half years, this week actually seemed somewhat normal…which actually felt somewhat strange.  Don’t get me wrong…it’s a feeling I could very used to.  It’s just that our family has been riding the cancer roller coaster for so long, and now that we’ve gotten off for seven weeks, we have to get our legs back under us again.  However, once we do, this will definitely be a summer to remember!  Until next week…

Winning (Part 2)

Last Friday, we received the amazing news that Megan’s PET scan showed no other cancerous activity in her body other than the current tumor in her chest.  It might sound crazy to say we were happy to hear that Megan only had one tumor, but when you are dealing with a relapse of Alveolar Rhabdomyosarcoma, other than a scan showing No Evidence of Disease (NED), the news we got on Friday was the next best thing.  ARMS tends to be a very aggressive form of pediatric cancer…especially during a relapse.  The fact that all three of Megan’s relapses have been small, slow growing and isolated continue to make her a very atypical case.  The current tumor located in her chest, very near her aorta is something we have been monitoring closely for the past three months.  Each month, her scans show that the tumor is growing, albeit very slowly.  However, the news we got last week also showed that her current tumor is showing less cancerous activity than it did three months ago.  So yes…Megan has a cancerous tumor in her chest, but we feel blessed that it seems to be isolated…and her body may possibly be healing itself!!!

Due to her PET results last week, Megan’s doctors wanted some time to determine if they still wanted her to start proton radiation on June 18.  Since her last scan showed that the tumor was actually showing less cancerous activity than before, they were considering monitoring it for another two months before making her endure a 6th round radiation.  We waited all week, and on Friday I received a call from Dr. Salvi telling us that her medical team had decided not to start proton radiation.  Instead, they want to wait seven more weeks and then schedule her for another scan to determine the status of her current tumor.  If her body keeps working to heal itself, then she might not have to go through radiation at all!!!  He also surprised us with some other exciting news.  Before starting proton radiation, Megan has to get a CT scan at the proton center which they use to locate the tumor and align her body correctly for the proton radiation.  Megan had this CT last Monday, and her radiologist said they had trouble even locating her current tumor!!!  This was very exciting news, because maybe Megan’s body has decided it’s had enough of cancer!!!

To celebrate the results from Megan’s recent PET scan, she and Deb booked a quick last minute trip to Megan’s favorite location–Los Angeles.  They headed out on Tuesday morning to visit our friend Kay Cannon (of Pitch Perfect fame!).  While they were in LA, I was able to call Deb and Megan to tell them the exciting news from Dr. Salvi.  To know that Megan will have seven weeks of peace is such a relief.  As I’ve said many times, when you are fighting cancer, you learn not to look too far ahead.  Instead, you have to become adept at living in the moment…which is a skill Megan has somehow mastered.  Some days I don’t know how she continues to wear that infectious smile on her face, but she absolutely refuses to let cancer define her.

Kenzi is currently working two different jobs and taking a summer school course, so unfortunately she and I were unable to go to LA.  Instead, we stayed very busy, but still enjoyed spending some quality time together.  It is so good having her home for the summer!!!  While Megan was gone, Kenzi kept an eye on Willow for her 🙂

While in LA, Megan and Deb had some awesome experiences.  Megan got to visit her good buddy Jonathan Sadowski, who is one of the kindest and most generous guys you will ever meet.  He took Megan under his wing early in her treatment and has stood my her side ever since.  Megan always loves to catch up with him.  Kay Cannon also got them tickets to the screening of the new Jurassic World movie, which she thought was incredible!

Kay also set it up for Megan to meet with the writers and a couple of the actors from her favorite show, Riverdale.  Megan got to spend some time with the writers and also hang out with a couple actresses from the show.  She thought that was amazing!!!

Megan was also excited because she got to meet her good friend Sophia at Universal Studios.  Sophia has the same type of cancer as Megan, and she lives in LA.  Unfortunately, Sophia recently relapsed, so she has been staying at St. Judes Hospital in Memphis where she receives her treatments.  It just so happened that Sophia was home for a couple days, so she and Megan were able to connect.  There is something special and strong about the bond between two teenage girls who are fighting the same type of cancer.

Other than that, Megan and Deb hung out with Kay Cannon, did some shopping, and just generally enjoyed the LA weather and atmosphere that Megan adores.  I picked them up at the airport very late on Saturday night.  There is nothing better than seeing Megan’s smile after she has been gone for a few days 🙂

Today is Father’s Day, and we have celebrated it just they way I like.  Both girls were here all morning and we just enjoyed each other’s company.  The girls got me the sweetest cards, which meant the world to me.  We were happy that Grandpa and Grandma Coope were able to join us for a cookout at lunch before Kenzi had to head to work at 2:00 p.m.  It’s times like this that I realize how lucky I am.  No matter what else is going on in life, Kenzi and Megan always bring me back to what is really important.  I am so proud of both of them, and I feel so fortunate that they call me Dad.

This will be the first week in three months that we will not be preoccupied with Megan’s next scan results.  We now have seven weeks until the next bout of “scanxiety”, and we plan to make the most of it!!!  They say “Attitude is Everything”.  If that’s the case, then cancer doesn’t stand a chance, because Megan knows she is going to win…and that is all that matters.  Until next week…

Winning!

Megan is currently fighting her third relapse of Stage 4 Alveolar Rhabdomyosarcoma.  She was originally diagnosed on December 30, 2014 and since that time, she has been staring down the beast and fighting with everything she’s got.  The longer this battle has gone, the stronger and more determined she has become.  This third relapse is a tumor located in her chest very near her aorta.  It was originally discovered about three months ago in a CT scan that was completed after the last of her 36 week relapse chemo treatments.  Since the tumor was so small at the time of detection, her medical team decided to monitor it as opposed to taking a biopsy, which they felt was too risky due to the tumor’s location.  Megan has had two more CT scans since then and both of them showed the tumor was slowly growing.  Her most recent CT showed that the tumor was still slowly growing and was now about 3 cm as opposed to 1.1 cm, which is what her original CT showed.  Since the tumor was still growing, and because its location made it too risky for a biopsy, her doctors determined that even though they couldn’t be 100% sure, they were still going to treat the tumor as if it were ARMS.  This meant a 6th round of radiation treatments for Megan.  However, before they would start the proton radiation, they wanted her to undergo a PET scan to make sure there was no other cancerous activity in her body.  A relapse of ARMS tends to spread rapidly, so even though Megan wasn’t showing any signs of a massive relapse, her doctors wanted to be sure.

A PET scan is a full body scan where Megan is injected with a radioactive substance which causes the fast growing cells to light up on the scan.  I’ve always found it to be the most nerve-wrecking of all the scans, because it is a full body scan that usually never lies.  Megan also knows how high the stakes are with a PET scan, so the day leading up, the day of, and the wait for results is agonizing for her.  Her scan was scheduled for noon on Wednesday, so she tried to keep herself busy throughout during the days prior.  On Monday, she had an appointment with her radiologist at 8:30 a.m. to plan her upcoming proton radiation regiment.  Megan has been through this five previous times, so she pretty much knows what’s coming.  Thankfully, her radiologist was able to schedule her formal proton radiation prep on the same day, so Megan and Deb kept themselves busy for a couple hours and then headed back to the proton radiation facility in Warrenville so she could get another CT scan and then get fitted for her radiation mold.  She ended up getting home at about 3:00 p.m. and then promptly fell asleep for three hours.

Her actual PET scan was on Wednesday at noon.  When she arrives at the facility, she gets her power port accessed and then they inject her with the radioactive material.  She then has to sit perfectly still for an hour, because if she moves around, the PET could show a false positive reading.  After the hour is up, she then moves to the PET scan room where she is in the PET tube for about 40 minutes.  As always, Deb said she handled it like a champ.  Since she had to fast prior to the scan, she was starving, so she and Deb stopped for some food on the way home.  Once again, Megan walked in the house and immediately went to the couch for a nap.  Not only is the process exhausting, but I can’t imagine how the stress and anxiety play on her emotional state.  The fact that she still walks around with that infectious smile on her face is amazing to me.  She serves as a vivid reminder that any problems I think I may have in my life pale in comparison to what she goes through on a daily basis.  Megan’s Journey has definitely given me a different outlook on life, because things that I used to obsess about are now just little bumps in the road.

The worst part of any scan is the “scanxiety” that comes with waiting for results.  Since Megan’s PET scan was on Wednesday afternoon, we were really hopeful we would have results before the weekend, but we knew it would be cutting in close.  Try putting yourself in Megan’s shoes for a minute, and I think you will realize how tough this process actually is.  She is waiting for test results that could determine her own mortality, and that’s an awfully mighty weight for a 17 year old to carry.  While she waits, Megan tries her best to keep her mind off of the results, but there are times that she can’t help but travel to some dark places.  Thankfully, she is always able to pull herself out of those tough times relatively quickly, but as a parent, it’s so hard to watch her go through it.  Sometimes, only her pets can provide relief when she is having a tough time.

We were getting to the point on Friday where we thought it might be a very long weekend, because it was past 5:00 p.m. and we had yet to hear from her doctors.  However, at 5:30 p.m., the phone rang from Central DuPage Hospital.  It’s very hard to explain the emotions that rush through your body as that phone rings with what you know are the scan results.  I usually have to let the phone ring about three times before I am mentally prepared to answer it.  By the tone of Dr. Salvi’s voice, I could tell right away that he had good news.  He said that Megan’s PET showed no other cancerous activity in her body other than the one tumor in her chest.  That alone was reason for all of us to celebrate, but he had even more positive news.  He also said that even though the tumor in her chest had grown slowly over the past three months, it actually showed less cancerous activity on this PET scan than it did in her previous scan from three months ago!!!  He said that was very rare to see and it was too early to make any definitive conclusions from, but it was still very positive news.  In fact, he said that he would have to discuss her PET results with the other doctors on Megan’s team to determine the next course of action.  They could still go ahead with the proton radiation treatments, but they might decide to wait another month before scanning her again to determine if her body is fighting back this cancerous tumor on its own.  We should know next week what they decide is the most prudent treatment option.  Either way, we were all on top of the world.  Kenzi and Deb had both been texting all day to see if the results had come in, and of course Megan’s “scanxiety” was through the roof.  When she heard the good news, you could just see the relief on her face.  Check out the difference in the pre-results picture with Willow above and the post-results picture with her below 🙂

As if Megan’s scan results weren’t reason enough to celebrate, we had also been waiting to celebrate the successful end to Kenzi’s freshman year at the University of Wisconsin.  She spent her first year fighting through some challenging times that all freshman go through, but her tough times were a little more magnified with her sister back home going through two relapses and chemotherapy treatments.  It’s a little tougher for Kenzi waiting for Megan’s scan results when she is three hours away from her family.  However, as she always does, she powered through and had an incredibly successful freshman year.  She formally declared her major in Communicative Disorders with a plan of becoming either a speech pathologist or audiologist.  She also made some great friends and took full advantage of everything such a dynamic campus had to offer.  On top of that, we could not be more proud of how she finished her first academic year.  It’s so good to have her back home for the summer!  Tonight, we finally had the opportunity to celebrate the successful completion of her freshman year with a fantastic dinner at Aodake in Bolingbrook.  Kenzi invited her boyfriend Nick to share in our family fun and laughs.  Here are a few pictures from our celebration dinner.

When you live with cancer, uncertainty is a part of life.  Because you have no idea what tomorrow will bring, you learn to make the most of today.  However, with the positive news we received on Friday evening, we can all take a quick breath and prepare to thoroughly enjoy the next month.  With every passing scan, Megan continues to defy all of the odds.  She continues to become more and more determined to beat down cancer and regain the life cancer has tried to steal from her.  Megan will never quit, so cancer…why don’t you just give up now!!!  Until next week…

 

When is Enough, Enough?

Today is “National Cancer Survivors Day”.  It is a day to celebrate all of those who have battled the beast and won, as their stories are filled with courage and determination. Although Megan is still fighting active cancer, I still consider hers a story of survival.  She has been battling for over three and a half years, and even though she is in the midst of her third relapse, her steely determination and positive attitude have never wavered. I could not be more proud of all she has accomplished, and all she continues to achieve not only in her own personal battle, but for all kids who are in the fight with her.

Although all cancer survivors should be celebrated, I can’t seem to keep my mind from wandering to thoughts of all of those brave souls who fought valiantly, but eventually succumbed to the vice grip of cancer…especially our most vulnerable, who happen to be our children.  Every single day in our country, the parents of 43 more kids will learn the devastating news that their child has cancer.  These parents will be filled with a sadness and anxiety that I could never put into words, because unless you have experienced that exact moment, you could never understand how it makes you feel.  Deb and I first heard those words on December 26, 2014, and ever since, our lives have changed dramatically.  I wish I could say the club we belong to is rare, but it’s not.  43 more parents join our club everyday, and even though it’s a relatively exclusive club, absolutely no one joins by choice.  We all watch our kids fight the good fight everyday wishing we could take the pain and anxiety away, but we can’t.  Instead, we hold their hands tightly as they cry; we put cold cloths on their foreheads; we wipe their mouths after they throw up; we hold back the tears as their beautiful hair has to get cut off; we agonize as we watch the nurses hang yet another bag of chemo that will poison their little bodies; and we comfort them as they are paralyzed by fear waiting for their scan results.  Deb and I are some of the lucky club members as Megan is still fighting, and we are definitely celebrating her victory on “National Cancer Survivors Day”.  Unfortunately, not all parents are so lucky…and my heart breaks for them, because I know our country can, should and must do better by them.

During Megan’s Journey, she has connected with other teenage cancer victims from all over the country and the world.  Some of these friends she has become quite close to, because they have a unique understanding of her situation that her other peers just can’t provide.  Megan’s friends fighting cancer give her a connection that provides peace when she is anxious; a calming voice when she is upset; and source of emotional support that none of us could give her.  Throughout her fight, she has become extremely close to a select few of these friends, but another evil of cancer is that it keeps taking her friends from her.  First she lost Mia, who was her heart and soul.  Megan often says that Mia was the one who truly understood her, and she knew she could turn to Mia in her times of need.  When cancer took the beautiful Mia from her, she was more devastated than I have ever seen her.  In fact, I still don’t think she has ever fully recovered from the tragic loss of Mia.  There have been other friends since Mia that Megan has lost, but none have hit her as hard as the recent loss of Sophia from Australia.  Megan and Sophia connected online, and they actually got to meet when Sophia traveled to Los Angeles.  Sophia was a beautiful girl who was fighting very aggressive Osteosarcoma.  This past week, Megan learned that after a long fight, cancer took Sophia from her.  She was crushed.  Can you even imagine the anxiety that Megan carries with her as she worries about her own mortality, while at the same time watching her friends pass away one by one?  It’s so unfair.  When is enough, enough?  We just have to do better by our kids.  4% is not enough to dedicate to researching cancer treatments for our country’s most precious resource–our kids.  Heaven received another angel last week, and I know Sophia is looking down on Megan as she continues her fight.  Here is a picture of Sophia and Megan from when they met in LA.  Our thoughts and prayers go out to Sophia’s family.  Rest in peace Sophia.

Although the loss of her friends is devastating to Megan, she uses their memories as further motivation to carry on in her personal crusade to bring more awareness and funding to childhood cancer.  Thanks to Senator Dick Durbin’s office, Megan was finally able to talk with someone from the National Institute of Health.  She has been wanting to find out how they determine what types of cancer they are going to focus their research on, because she knows that the 3.8% they allocate annually to childhood cancer is not nearly enough.  Although I don’t think she really liked the answers she got, she is definitely not shy about voicing her opinion and advocating for all the kids who are fighting this ridiculous disease.  She is still raising funds to support Dr. Walterhouse’s research at Luries Children’s Hospital in Chicago, which you can donate to here.  She is also trying to determine the next steps necessary to finally convince the Federal Government that they have to do more to cure childhood cancer.  We can’t afford to lose anymore children to a disease that could be stopped if we only made it a national priority.  As I have said many times before, our great country can accomplish anything when we set our minds and resources to it.  Don’t our kids deserve that much?  Here is a picture of Megan talking on the phone with the National Institute of Health representative.  Of course her kitten Willow was there for moral support 🙂

Speaking of Megan’s fundraising efforts, she received another huge surprise today.  Megan works for Kim Scerine at the Broadway Dance Studio in town.  It’s been a tremendous diversion for her as she loves dance, and really enjoys the people at the studio.  This weekend was their annual recital, so Megan has been there everyday this week helping them with preparations, and also helping the children during the three shows this weekend.  Today was the final performance, and at the end of the show, Kim Scerine and the Dance Studio recognized Megan’s fundraising efforts and surprised her with a $2,000 donation to Luries Children’s Hospital to support Dr. Walterhouse’s research!  Megan was floored as were Deb and I.  We could not thank Kim and the studio enough for not only supporting Megan, but also supporting her efforts to end childhood cancer.  Here is a picture of Megan and Kim after today’s presentation.

This was a very big week for Megan as she had a CT scan on Wednesday to check the status of the tumor that was discovered in her chest two months ago.  We received the results on Thursday afternoon, which showed that her tumor is continuing a slow but steady growth.  Since it is located so close to her aorta, her doctors still cannot get a biopsy to know for sure, but since it is growing, they are going to treat it as if it is ARMS.  This means that they will order a PET scan for her, which will be at noon on Thursday, to make sure there is no other cancerous activity in her body.  If that comes back showing nothing but the tumor in her chest, then she will undergo yet another round of proton radiation to treat the tumor.  She has already gone through about 125 radiation treatments, so another 4-6 weeks is nothing new for her.  I hate that she has to go through yet more radiation, but the news could have been much worse.  When ARMS relapses, the tumors tend to grow and spread rapidly.  Fortunately, Megan’s latest relapse is once again rather atypical for ARMS, but as her oncologists remind us, cancer by nature is very unpredictable.  Waiting on the CT scan results was tough on Megan, but the PET scan wait is even tougher, so Thursday and Friday won’t be easy for her.  However, as always, she will keep that smile on her face and continue not only fighting for herself, but for all kids who are in the ring fighting with her.

“Be thankful for today, because in one moment, your entire life can change.”

“We Rise By Lifting Others”

When Megan first set out on this journey three and a half years ago, she was an extremely shy 13-year-old who would barely look you in the eyes when she spoke to you.  She was a bit of a loner who did not like the spotlight, and would avoid conflict at all cost.  Stage 4 Alveolar Rhabdomyosarcoma not only forced her to grow up much quicker than she should have, but it also caused her to become her own best advocate.  Now, when she sees her oncologists, she questions everything.  She wants to know why they are making certain decisions, and she is not afraid to make her doctors justify every course of action they decide to take in her battle with cancer.  Over the past six months, not only has she become her own best advocate, but she has decided to take on the role of becoming an advocate for all kids…past, present and future…who have, are, or will experience their own personal nightmare with childhood cancer.  Megan has chosen to expand her fight beyond her own personal battle by raising money and awareness for the plight of childhood cancer.  She has chosen to become the change she wants to see in the world, and we could not be more proud of her.

Over the past few weeks, Megan has been writing and calling her state and federal legislators to set up meetings with them.  She believes that if she just gets an opportunity to tell her story and the stories of her friends, she can make them understand the importance of dedicating more funding towards finding a cure for childhood cancer.  This past week, her personal crusade took a major step forward.

The very first legislator to respond to Megan was Representative David Welter of the 75th District in Illinois.  After their initial meeting, Representative Welter has kept in touch with her as he tried to find an avenue to support Megan’s efforts.  Since funding for the National Institute of Health (NIH) comes from the Federal government, our state government really has no authority over the allocation of dollars or the priorities of the NIH.  About a week ago, Representative Welter called Megan with some very exciting news.  He had introduced House Resolution 1071, which specifically recognized Megan’s efforts, but also sent a strong message to our local Federal legislators that our State is firmly behind Megan and all kids fighting childhood cancer.  David told Megan that he planned to introduce the bill on the House floor on Thursday and he wanted her to attend.  Thanks to Representative Welter and others, it turned out to be a very good day for Megan and an even better day for all kids fighting childhood cancer.

Megan arrived on Thursday afternoon to meet Representative Welter and a Springfield lobbyist I have known for years, Randy Witter.  They immediately surprised Megan by whisking her to the Capital Building to meet Governor Bruce Rauner.  Governor Rauner had heard about Megan and her advocacy efforts, and he wanted to have a quick meeting with her.  When she got to the Governor’s office, she also found Senator Sue Rezin and Representative Lindsay Parkhurst waiting for her.  Both of them are local state legislators who represent our area.  Megan was also very happy to meet Grandpa and Grandma Bugg at the Capital who drove there to support her.  Here is a picture of Megan with three of her local legislators.

Soon after, Governor Rauner came out and was very complimentary and genuine with Megan.  She was appreciative of his time, because he is a very busy man.  Here is a picture of Megan and the Governor.

After the meeting with the Governor, Megan and Representative Welter were off to the House floor for the reading and hopeful passing of HR 1071.  You can find HR 1071 here and I have also taken a picture below.

If you have ever been to the House floor, it can be a pretty raucous place.  They had a few items of business to attend to prior to the introduction of HR 1071.  When HR 1071 was called, Representative Welter started to speak as to why he had introduced this bill.  When he first started speaking, it was still pretty noisy on the House floor, but after about thirty seconds, you could hear a pin drop.  Mr. Welter did an amazing job telling Megan’s story and explaining why she is so passionate about increased awareness and funding for childhood cancer.  You can find a video of Representative Welter’s speech here.  At the conclusion of his speech, he asked for a motion that would include every State Representative in Illinois as a co-sponsor of HR 1071, which passed unanimously.  Once the Resolution was passed, the entire House floor and the gallery rose to their feet to give Megan a standing ovation.  It was such a powerful and touching moment.  My only wish was that every single kid fighting cancer, and every parent who has lost a child to this ridiculous disease could have been there to witness this event.  As Megan continues to fight for childhood cancer, more and more people are becoming aware that our Federal government allocates only 3.8% of cancer research funding towards finding treatments and cures for childhood cancer.  We could never thank Representative David Welter enough for helping Megan carry the torch for childhood cancer.

As soon as HR 1071 passed the House, Megan went over to the Senate to sit with Senator Rezin on the floor of the Senate.  That was another surprise for Megan as Senator Rezin took a moment on the Senate floor to recognize Megan.  Many thanks to Senator Rezin for her constant support of Megan’s efforts.

Two weeks ago, Megan delivered a fundraising check for $73,000 to Dr. Walterhouse at Luries Children’s Hospital to support very promising research he is conducting on ARMS and Ewings Sarcoma.  That brings her total fundraising efforts to $83,000.  Megan has recently updated her fundraising page as she wants to raise a total of $100,000 to support Dr. Walterhouse’s research on childhood cancer.  If you would like to make a tax deductible donation, you can still do so on her fundraising site. The great thing about her fundraising effort is that 100% of every dollar donated goes directly to support Dr. Walterhouse’s research.

This past week, her advocacy efforts took a huge step forward thanks to the efforts of Representative David Welter and our other local legislators.  Senator Dick Durbin has also made a contact available to Megan from the National Institute of Health, and she is working at scheduling that phone conference very soon.  Megan is specifically interested in how the NIH determines the amount of funding that goes to each type of cancer.  She was also very excited to learn that Congressman Adam Kinzinger, who she met with a couple weeks ago, has sent a letter directly to the NIH encouraging them to increase funding for childhood cancer research.  I am starting to think that as Megan continues her efforts, there just might be an advocacy trip to Washington D.C. in her future.

What I find even more admirable is that Megan is doing all of this while actively fighting her third relapse with ARMS.  In fact, this Wednesday at 12:30 p.m. Megan will be going to CDH for yet another CT scan to determine the status of the tumor that was discovered a couple months ago in her chest very near her aorta.  We will then meet with her medical team on Friday at 8:45 a.m. where we will learn the results of the CT and the plan for her treatment.  Our hope is that the tumor is not growing and can be handled via another bout of proton radiation treatments.  It does no good to think negative thoughts, so that is the most positive outcome we could hope for.  We need all of “Team Megan” to send positive thoughts and prayers starting on Wednesday at 12:30 p.m.

Megan continues to fight for all kids and families who have experienced the nightmare that is childhood cancer…and she is doing so knowing that she has her own tumor in her chest, which makes the future very uncertain for her.  I don’t know where I saw this quote, but I have a tendency to write down quotes that are meaningful to me.  I recently saw this one…

“We rise by lifting others.”

If that is indeed true, then I believe that childhood cancer has met its match.  Not only do I believe Megan will win her own personal battle, but before she is done, she just might be the catalyst we need to end this ridiculous disease so that no more kids will have to fight this battle, and no more parents will have to watch their child suffer.  Until next week…

This is About Something Much Bigger

As Megan continues on her three and a half year journey of fighting cancer, I am often reminded of the incredible support she has received from everyone on “Team Megan”.  When things were at their absolute toughest for her, it was the cards, letters and well wishes from all of you that kept her motivated to continue the fight.  One of the byproducts of making over 514 blog entries during Megan’s battle has been the connections it has opened up for both Megan and our family.  Through the magic of social media, Megan has connected with kids from all over the world who are fighting this ridiculous disease.  Many of these kids have become her closest friends, because they share a bond that none of us could ever truly understand.  I have also connected with parents from all over the world who are trying desperately to understand why this happened to their child and how in the world they will ever get through it.  Whether it is Megan and her friends, or their parent and me, we all share a common bond that I wouldn’t wish on anyone.  We all belong to an exclusive club that absolutely no one wants to join, but as exclusive members, we have all learned to support each other through the roller coaster ride that is childhood cancer.

Not only have these connections enriched our lives, but they have also made our family aware of the many kids who are fighting this battle along with Megan.  It is these connections that have led Megan to realize that the battle against childhood cancer is much bigger than her.  Although she is fighting her own personal battle with everything she’s got, she has expanded her fight to include every single kid who has experienced the nightmare that is childhood cancer.  It has become her mission to not only win her own battle, but to also use her story and her voice to bring awareness to pediatric cancer so that other kids can have a better chance to win their battles as well.  She is determined to become a powerful and influential voice as an advocate for childhood cancer, because as she often says, “Every kid deserves a chance at having a life.”

As Megan’s advocacy efforts continue to gain momentum, this past week was a very big one for her.  Over the past few weeks, Megan has been making the rounds to visit our local legislators.  She started with our local state legislators with the hopes that they could connect her to our Federal legislators who actually hold the purse strings to fund childhood cancer research.  Two weeks ago she met with Senator Dick Durbin, and this week she had the honor of sharing her story with Congressman Adam Kinzinger.  Over the past three and a half years, “Megan’s Journey” has changed her from an extremely shy 13-year-old into a confident 17 year old who is no longer afraid to speak her mind.  With every legislator she has met, she has continually become more adept at telling her story, and her story reached an emotional pinnacle when she met with Congressman Kinzinger last week.  She controlled the conversation from start to finish and even showed Congressman Kinzinger pictures of friends who are fighting cancer as reinforcement of her position that childhood cancer deserves more than 3.8% of Federal funding for cancer research.  Congressman Kinzinger was not only extremely attentive, but he seemed genuinely moved by Megan’s story.  Thank you so much to the Congressman for taking time out of his very busy schedule to talk with Megan.  I hope he continues to carry her message to Washington, D.C.

Megan has also been working hard to raise as much money as possible to support the important research being conducted by Dr. Walterhouse at Luries Children’s Hospital in Chicago.  One of the most rewarding aspects of watching Megan’s fundraising effort has been the number of kids who have taken active roles in helping her raise money.  As I told Megan, even more important that the money she is raising is the awareness she is bringing to the issue of childhood cancer.  Unless childhood cancer has impacted kids directly, they are probably unaware of the challenges that it brings.  Megan’s advocacy efforts have helped many teenage students in our area become more aware of childhood cancer and the desperate need for more funding to support research efforts.  These teenagers will be voting in a few years, and now that they are aware of childhood cancer, they can continue to make a difference in ending this nightmare for kids.  Over the past couple of weeks, Megan has received fundraising checks from Saratoga School, St. Rose School, Reed-Custer Middle School, and the Coal City Schools.  Individual kids have also held fundraisers to support her cause.  It’s been so refreshing to see other kids become activists in the fight against childhood cancer.  Earlier this week, Megan was invited to Morris High School to receive a check from their school, because their students decided to donate the funds from their Spring Week to Megan’s cause.  When Megan got to MHS, there were four students there to greet her, and after they treated her to lunch, they presented a check to Luries Hospital for $1,660!!!  Megan was floored by their generous donation and by the kindness of the students at Morris High School.  Here is a picture of Megan with some of the students.

Friday was the big day Megan had been waiting for as she was heading up to Luries to personally deliver her check to Dr. Walterhouse.  Last October, Megan delivered a check for $9,200 and promised Dr. Walterhouse that more was on the way.  She set up her fundraising page with the goal of raising another $10,000.  Thanks to the generosity of so many people, she quickly met her goal and changed her target to $20,000.  Over time, she eventually set her goal at $60,000.  This past week, a lot of fundraisers were completed so Megan was unsure of her total.  Before she went up to Chicago, we added up everything and we were all in shock when we realized that she was about to deliver a check for $73,624!!!  I haven’t seen Megan that excited in a long time. That made a total of nearly $83,000 she has raised to support Dr. Walterhouse’s research on Alveolar Rhabdomyosarcoma and Ewings Sarcoma!!!

When we got to the hospital, we were met by Olivia who had been the contact helping Megan throughout her fundraising effort.  Megan was also thrilled that Nurse Kathy made the trip from Central DuPage Hospital to be a part of her special check presentation.  Kathy has been like a second mom to Megan during her illness, and she has become an important part of our family.  I was touched that she took the time out of her busy schedule to come and support Megan.  Below is a picture of Megan filling out the big check that she was about to present to Dr. Walterhouse, and also a picture of Nurse Kathy, Megan and Dr. Walterhouse.  It was definitely a proud moment and one that I know Megan will never forget.  She is hopeful that her donation will help Dr. Walterhouse continue his research and be a part of finding a cure for childhood cancer.

“Megan’s Journey” continues as she has a scan scheduled for May 30 to check the status of the tumor in her chest and determine a treatment plan.  In the meantime, she continues to fight her battle with everything she’s got, but now her focus is on much bigger things.  Not only is she fighting her own battle, but she is fighting for something much more important. She is taking on childhood cancer for every single kid past, present and future so that someday childhood cancer will be a distant memory…and no kid will ever again have to face this beast.  Until that time…the battle continues…

Happy Mother’s Day

Happy Mother’s Day to all of you moms out there who do so much for your kids every day.  You have such an important job, so it’s appropriate that we set aside a day to celebrate everything all of you do.  Also, an extra special Mother’s Day to all those moms who are right now helping their kids fight through the nightmare that is childhood cancer.  Being a mom is a tough job, but watching your child fight this beast takes a very special and strong person.  Today is also a day to remember that there are moms out there who have lost their precious child to pediatric cancer, which makes today an especially difficult day for them.  It is for those kids and those moms that we just have to do better for our kids.  We have to find a cure for childhood cancer so no more kids or their families have to go through this.  It is for all of these kids and all of these moms that Megan continues to fight for the awareness and proper funding of childhood cancer research.  Our great country has shown that when we set our minds to something, we can accomplish anything.  It’s time for our leaders to decide that curing childhood cancer is a priority, because our kids deserve it.

Speaking of strong moms, our family celebrated Mother’s Day with one of the strongest today.  When a child is fighting cancer, it takes so much strength to keep everything together and continue moving forward day in and day out.  Deb has shown such resilience, strength and love to both girls as she continues to guide them towards adulthood.  She is a very special mom and wife who definitely deserved a very special day.

Kenzi got home from college on Wednesday, so we had our entire family together to celebrate Deb’s special day.  The girls made reservations for brunch at a fun restaurant in Naperville, and then we stopped to do some shopping before heading back home.  Before we left for brunch, the girls also had some special cards and gifts for their mom.  It was a great day, and so much fun to have our family together to celebrate Mother’s Day.  When your child is fighting cancer, every special day carries just a little more weight than it did before.

Megan’s birthday was April 30, but since she had so much going on that week, she didn’t hold a birthday party with any of her friends.  On Saturday, she had five of her friends over for the evening to celebrate with her.  She had so much fun hanging out with her friends and being a normal teenage girl for a while.  Of course, I messed up and forgot to take any pictures, so you will have to take my word for it that she had a great time.

On Saturday morning, Megan received a special visit from a representative of a very special organization called “Team Make a Difference”.  It’s an amazing organization that helps families with sick children by remodeling rooms to not only make a space like a bedroom extra special for the sick child, but they also do further remodeling if necessary to make a house more accessible.  We listened to stories of all of the kids and families this organization has helped and it’s really quite remarkable.  The representative of “Team Make a Difference” was accompanied by a very special mom who tragically lost her daughter to brain cancer.  Megan actually played club volleyball with this girl before she passed.  Both of these remarkable women knew of Megan’s fundraising efforts to end childhood cancer, and they wanted to help.  “Team Make a Difference” recently held their annual fundraiser and they decided to donate $1,200 to Megan’s efforts.  She also received another $250 from the mom she knew.  Megan was so touched by their kind gestures in support of childhood cancer.

Speaking of donations, Megan is so excited because this Friday she is formally donating the money from her fundraising efforts to Dr. Walterhouse.  She is thrilled because thanks to the generosity of so many people and organizations, she will donating about $65,000 to support Dr. Walterhouse’s research!!!  Dr. Walterhouse is at Luries Children’s Hospital in Chicago, and he is conducting very promising genetic research on Alveolar Rhabdomyosarcoma and Ewings Sarcoma.  Megan is proud that every dollar she has raised will go directly to support the research Dr. Walterhouse is conducting in his lab.  On Friday, Megan will formally present the check and she gets to tour his lab.  If you are interested in supporting Megan’s effort to end childhood cancer, you can still donate on her fundraising page here. Together, we can end childhood cancer!!! #morethan4

Kenzi finished a very successful freshman year at the University of Wisconsin at Madison and came home on Wednesday afternoon.  She had such a fantastic year and we are so proud of her.  It’s not easy being away when your sister is fighting cancer, so there were some tough times, but she was able to power through and now she is back home for the summer.  She doesn’t have much down time as she starts working one of her two summer jobs tomorrow morning.  That girl never lets any grass grow under the tires 🙂  This past week, she had fun catching up with many of her high school friends who are back from college as well.  It’s so good having our family back together for a couple months.

Megan continues to fight some of the lingering effects of her 90 weeks of chemotherapy such as chronic fatigue and stomach irritation. As readers of this blog know, Megan’s doctors are continuing to monitor a tumor that showed up in her chest during her scans two months ago.  Her last scan showed that the tumor is very slow growing, so because if its small size and its proximity to her aorta, her medical team continues to monitor it before deciding on a course of action.  She has another CT scan scheduled for May 29 and we should have the results the next day.  At that point, her oncologists will determine if the tumor is large enough to biospy or if they will prescribe another round of proton radiation to get rid of it.  Obviously, this issue causes Megan significant anxiety that she continues to fight on a daily basis.  It’s so hard to concentrate on school work or anything else when you are a teenager worried about a potentially cancerous tumor in your chest.  Considering all she has been through, I really don’t know how she functions so well on a daily basis.  She is remarkably strong and so resilient.  She inspires me everyday to work harder and be a better person.  We could all learn a lesson from how Megan has traveled this incredibly arduous journey.

Once again, a very happy Mother’s Day to one and all, and be sure to give your kids an extra hug tonight.  Until next week…