The Weight She Always Carries

Make no mistake…Megan is one of the lucky ones.  She has battled one of the most daunting forms of childhood cancer and come out on top not once, but four times.  Alveolar Rhabdomyosarcoma is an evil beast, but Megan has never shied away from the challenge.  Over the past five and half years, there have so many times when I have been in awe of her strength, determination and grace in the face of such adversity.  When her mouth sores were so bad that she could not swallow or talk, she just kept fighting.  When the neuropathy in her legs got so bad she couldn’t walk up the stairs to her bedroom, she just kept fighting.  When the nausea got so bad that she couldn’t leave the bathroom, she just kept fighting.  When she ended up in the ICU with a life-threatening sepsis, she just kept fighting.  And when she relapsed for the 4th time, she remained as determined as ever to beat childhood cancer once and for all.  Megan is by far the toughest young lady I have ever met, but I hope no one from the outside looking in thinks this battle is easy. Childhood cancer carries with it so many physical challenges, most of which are apparent to anyone.  However, it’s the accompanying mental challenges that can truly wear down not only a child fighting cancer, but even more so for a childhood cancer survivor.

There are no better words for a childhood cancer fighter than “remission”.  However, in traveling by her side throughout “Megan’s Journey”, we have learned that “remission” means you won the battle, but the war is far from over.  The mental struggles of learning to live as a childhood cancer survivor can be crushing.  Just think about how many times you get a headache, a cough, a sore throat, a very low grade fever, achy joints, a sore back, etc.  For a childhood cancer survivor, every single one of those aches and pains brings with it the thought that the beast has returned again.  The anxiety of the cancer returning leads to the awful memories of chemotherapy and all of the terrible side effects that come with these archaic treatments.  Then your thoughts naturally lead to your own mortality, which is a weight that no child should ever have to bare.  On most days, Megan handles this incredible burden very well, but at times, it can get the best of her.  Like she has told me in the past, there is never a day that the anxiety doesn’t enter her mind for at least a little while.  The battle is daily.

This week, Megan just hasn’t been feeling like herself.  She has been extremely tired and struggling to get through routine daily activities.  The likely culprit is that she just has a touch of something, but naturally, her mind is working overtime.  This weekend, she got in touch with her amazing nurse practitioner, Kathy, who always answers Megan’s texts no matter the day or time.  Kathy gave her some reassurance which helped.  Megan also got some blood work done on Saturday morning, so she should get those results on Sunday.  She is not scheduled for her next set of scans until August 24 and 25, and her team knows that is a long time for Megan to wait for some relief from the anxiety, so even thought everyone believes she is okay, it is a matter of putting some things in place to make her feel better.  Obviously Megan is not unique to this all too common phenomenon of living with the anxiety that comes with being a childhood cancer survivor.  So many of Megan’s friends continue to experience the same feelings.  It’s just one more reason that we have to find a way to conquer this terrible disease so that it cannot continue to wreak havoc on the lives of our most precious resource…our kids.

The best thing to do when Megan is worried is to keep her mind as busy as possible.  Megan was so excited that her good friend, Katelyn, came from Missouri to visit her for a couple days.  She and Megan had a lot of fun…especially when they went for supper and a shopping trip to Morris.  Megan even made a stop to get the first haircut she has had since she ended her last chemotherapy treatment.  It’s little things like this that many take for granted that are truly beautiful moments for our family.

It’s been helpful that her sister, Kenzi, is still home for a couple more days before she needs to head back to Madison for her senior year of college.  Speaking of Kenzi, it is so hard to believe that she is starting her senior year at the University of Wisconsin-Madison.  We are so proud of everything she has accomplished while being a Badger.  Of course she is disappointed that her senior year will be mostly online learning due to this pandemic, but that will not diminish her obtaining that degree from UW.  She is studying to be a speech pathologist, so she will soon be applying for graduate school.  In preparation, she has been hard at work this summer completing an online GRE preparation class, and she will be taking the actual GRE exam on August 26.  It is amazing to watch her motivation as she religiously sits down every single day for at least an hour to complete her daily GRE lesson.  My dad always told me that hard work and determination were the keys to success in life.  If that is indeed true, and I’m sure that it is, then success is definitely in Kenzi’s future.  Here is a picture of Kenzi and her boyfriend Nick just prior to their date night.

Thursday was Deb’s birthday.  The girls were so excited to make the day special for her.  We got some birthday donuts to start her day, and the girls worked hard to make sure she had the perfect gifts.  Kenzi put together a Shutterfly book of the trip we took a couple years ago to Paris and London.  It’s something Deb always wanted, so she was really excited.  Megan got her a special bubbling water dish for the cats, which Deb also absolutely loved…and so did the kitties :). However, the coup d’etat was the four layer chocolate birthday cake with Megan’s famous homemade chocolate frosting that the girls made for their mom.  It was incredible!!!

Megan was so excited to make the $16,000 deposit from her garage sale into her fundraising account through the Children’s Cancer Therapy Development Institute.  Thanks again to everyone on “Team Megan” who made that event such a huge success.  Megan has now raised over $63,000 to fund the preclinical trials necessary to help bring a very promising treatment for RMS to full clinical trial.  Although her fundraising to date has been amazing, she knows she still has a long ways to go to reach the $180,000 needed to reach her goal.  The “Team Megan Bugg Golf Outing” is taking place on August 22 at the Nettle Creek Golf Course, which Megan is also really excited about.  The response to this event has been amazing!!!  Although all of the foursomes are filled, there are still opportunities for sponsorships, but tomorrow is your last chance as the sponsorship signs have to get to the printer.  If you are interested in sponsoring this event, please contact Tim Jezik at 815-679-8149.  Megan would like to thank everyone who has already agreed to sponsor this event.  Once again, all proceeds will go towards her fundraising efforts through CC-TDI.

Megan is strong and she is as motivated as ever, but it’s important to remember that for her, the battle continues…every single day.

“It’s Time To Talk About My Life?”

It’s been five years and 7 months.  That’s how long Megan’s life has been dominated by this beast called childhood cancer.  Since she was 13 years old, Megan has known nothing but this cruel hand she has been dealt.  Because of childhood cancer, she essentially missed her entire high school career and all the customary rights of passage that accompany that journey.  This past year was especially difficult because as many of her classmates were heading off to college or joining the workforce, she was back in treatment for her third relapse.  Late this spring and into early summer, she relapsed for a fourth time, which further delayed any talk about what she was going to do with her life once she defeated this beast once and for all.  Given all she has been through, it would be easy for Megan to just sit back, wait it out, and see what cancer was going to throw at her next…and given all the times in the past that cancer has ruined her plans, it’s easy to see how she could embrace such an approach to her future.  However, letting cancer win has never been Megan’s style, so it was fitting today when we were all sitting on the couch watching the Cubs that Megan suddenly said, “I think it’s time to talk about my life.”

Megan has her next set of scans on August 24 and 25, which will let us know if her Gamma Knife Radiosurgery was successful on the tumor at the base of her skull.  As a reminder, Megan’s most recent relapse was a strawberry-sized tumor at the base of her skull in her clivus bone, which is located very near her brain and her optic nerve.  Because of the tumor’s precarious location, normal radiation was too risky, which is why Gamma Knife Radiosurgery was the chosen treatment.  She underwent this procedure on June 9, and her medical team believes that the procedure was successful, but the only way to know for sure is to wait for her scan results.  Since radiation always causes swelling, she has to wait a couple months before an accurate scan can be completed.

Although Megan is obviously worried about her upcoming scans, she is also not going to sit there and feel sorry for herself for the next month.  In between scans, she always finds something to keep her mind occupied…and usually that involves advocating and raising money for childhood cancer.  As readers of this blog know, Megan spent the last month getting ready for her garage sale to benefit her fundraising efforts through the Children’s Cancer Development Institute (CCTDI).  Last week, I posted that her garage sale raised over $14,000.  Well…during the past week she has continued to receive some donations from people who said they were unable to come last weekend, which means that very soon, she will be making a donation to CCTDI of over $16,000!!!  Although she still has a long ways to go, once she makes this $16,000 donation, she will have raised $60,000 towards her ultimate goal of raising $180,000 to support the pre-clinical studies on a very promising treatment for RMS (Megan’s family of childhood cancer).  Megan is so appreciative of everyone on “Team Megan” who supported her benefit garage sale.

Speaking of fundraising, this is your last week to order the awesome childhood cancer-themed cupcakes from The Morris Bakery.  A portion of all sales of these cupcakes will go directly to Megan’s fundraiser.  So far, The Morris Bakery has raised over $1,000, so let’s help them break that $2,000 mark this week.

Megan has also been getting ready for the Team Megan Bugg Golf Outing, which will take place on August 22 at the Nettle Creek Golf Course.  All proceeds from this event will go towards Megan’s fundraising efforts through CCTDI, and I know she is very excited about the turn out for this event.  All 40 foursomes are already sold, but there are still opportunities for corporate sponsorships.  If you are interested in sponsoring this event, please contact Tim Jezik at 815-679-8149.  If you want your name listed for a hole sponsorship or other sponsorship, please contact Tim by the end of this week because he will start working on the sponsorship signs very soon.  Thank you so much to everyone who has already reached out to help sponsor this event.  Just remember, by sponsoring this event, you could have a hand in funding the first treatment for Alveolar Rhabdomyosarcoma and Ewings Sarcoma in the past 6 years!!!  Your small donation could have a huge impact on the lives of so many of these brave childhood cancer warriors.  Megan is really looking forward to personally thanking everyone out at the golf course on August 22.

This afternoon, Megan really opened up for the first time in many months about her desire to put childhood cancer behind her and move on with her life.  She talked about eventually wanting to be a nurse, but honestly shared that her “chemo brain” issues would make school really challenging right now.  If you aren’t familiar with “chemo brain”, just talk with any survivor of intense chemotherapy and they will explain to you the accompanying memory and cognitive issues they are experiencing.  There are clinical studies going on right now, and no one really knows why it happens, but when you talk with Megan and her cancer fighting friends, it’s very real.  Megan shared that until she feels better about her memory, she would like to get out on her own and get a full time job.  She has even talked with one of her childhood cancer friends from Los Angeles about the two of them moving in together for awhile.  Anyone who knows Megan knows that her dream has always been to move to LA 🙂 After everything she has been through, I think she is entitled to start chasing her dreams.

Who knows where Megan’s future will take her, but it is so refreshing to hear her talk about it.  For so many years, her life has revolved around her next chemo treatment, her next radiation session, and her next scan.  To hear her focused on something beyond that makes me think that she is on the verge of kicking this beast to the curb once and for all.

“The human spirit is stronger than anything that can happen to it.”      C.C. Scott

Here are a few pictures from what was a great week at the Bugg home.  Until next week…

 

Garage Sale Success!!!

As readers of this blog know, Megan has been working diligently to raise $180,000 to fund the preclinical studies necessary to get a very promising childhood cancer treatment approved for a full clinical trial.  If successful, this treatment would be for both Megan’s type of cancer (Alveolar Rhabdomyosarcoma) as well as Ewings Sarcoma.  She has partnered with the Children’s Cancer Therapy Development Institute (CCTDI) on this exciting new research.  Directly from her CCTDI fundraising page, here is an explanation of both why she is so passionate about this particular project and some specifics about Entinostat.

Rhabdomyosarcoma (RMS) is the most common soft tissue sarcoma of childhood, adolescent and young adults. Clinically, survival amongst metastatic RMS patients has remained unacceptably low and unimproved for years, if not several decades. The most aggressive type of RMS is Alveolar Rhabdomyosarcoma (ARMS) has received very little clinical research and deserves more attention. It is unacceptable that no new agents have emerged for testing in clinical trials for high-risk or relapsed RMS in the last 6 years. As a result, the disease-free survival for ARMS have remained unchanged for 47 years!!! It is disheartening to know that NO primary drug approvals for RMS have occurred in history EVER…and only 8 drugs developed for any childhood cancer have been FDA approved since 1978. By comparison, 12 or more adult cancer drugs on average are FDA approved annually. CTDI is bringing new and exciting innovations and recent discoveries to the specific challenges posed by RMS, and I am excited to support one of their most promising research projects. My goal is to raise $180,000 for preclinical testing of a drug called Entinostat. This drug has shown tremendous promise in the CTDI labs as a potential treatment that could restore chemotherapy sensitivity and thereby improve outcomes for RMS patients. By raising $180,000, it will pay for the preclinical testing of Entinostat which will increase the likelihood that a full clinical trial will be approved. Kids like me who have been fighting RMS need hope, and getting this clinical trial funded will be the first glimmer of hope these kids and their families have ever received. Please help me support all of the brave kids who are fighting this terrible and devastating disease.

Megan’s passion for raising awareness and finding a cure for childhood cancer started right after she was declared in remission for the first time following 54 weeks of grueling chemotherapy and radiation treatments.  She started to connect with other childhood cancer warriors from all over the country, and the world, and realized that something had to change.  As she did with her treatments, she decided she would not be one to just sit around and complain.  Instead, she attacked the issue with the same fervor she put into fighting her own personal battle with this vicious beast.  She started her quest for a cure by partnering with a doctor at Luries Children’s Hospital, and she ended up raising over $200,000 in total for specific childhood cancer research projects there.  She also partnered with Ivory Ella on a clothing line for Childhood Cancer Awareness month and was so excited when that project resulted in a $30,000 check going to Boston Children’s Hospital for childhood cancer research.  Now she is solely focused on raising the $180,000 necessary to get this very promising treatment for RMS to full clinical trial.  When Megan is finally successful in meeting her current goal, she will have been directly responsible for raising over $400,000 to support childhood cancer research.  Considering that the pharmaceutical companies ignore childhood cancer because they don’t see it as profitable, and the fact that the Federal government only allocates less than 4% of their total cancer research budget on childhood cancer, Megan’s contribution is monumental to the cause.  This weekend, thanks to the support of so many kind and generous people, Megan took a huge step towards reaching her $180,000 target.

We recently replaced the flooring on the main floor of our house, which prompted some late spring cleaning.  As we collected items that we were no longer using, Megan got the idea of holding a garage sale with all of the proceeds going towards her fundraiser.  In typical Megan fashion, what started as just getting rid of a few items turned into a huge event.  So many kind people donated things for Megan to sell, and it got to the point where we didn’t know how much more we could fit in our garage!  Megan and our family spent hours organizing, pricing, and planning for the event.  Here are a couple pictures of our garage in the days leading up to the event.

On Friday morning, we got up extra early because we had so much to sell that we had to set up all the way down our driveway.  Thank you to the kind friends and neighbors who donated tables, tents and other equipment for the event.  Here is a picture of Megan on Friday morning at the start of the sale.

This event could not have happened without the help of Megan’s sister Kenzi, Makenna, Ryan and Dailey who stayed out in the oppressive heat to run the checkout tent, sell raffle tickets, carry items to cars, pack up cupcakes for sale, and so much more.  Here are a few pictures of our awesome crew.

Kenzi, Dailey, Ryan, Megan and Makenna at the checkout table 🙂

I’ll admit, it was an exhausting week and at the end of the day on Saturday, we were all so tired…but the most exciting part was still to come as Megan had to draw the raffle winners and then most importantly, see how much money she raised for childhood cancer research.  To raise more money, Megan held a 50/50 raffle and a raffle drawing.  She also sold cupcakes that went so fast each day that Megan had to run inside to make more 🙂  Here is Megan drawing the winners for all of the raffles.

Megan drawing the winners as Kenna looks up who won and Kenzi records.

Thank you so much to everyone who donated raffle prizes!!!  Here are the winners of the 50/50 and the raffles.

Split the Pot–Pam Agamy (and she made a generous donation to Megan’s fundraiser)

Hustle & Hunee Boutique Gift Card–Laurie Hermes

Book signed by JoJo Siwa–Michelle Phillips

Sour Candy Bouquet (made by Dailey’s mom)–Ryan Horrie

Chocolate Bouquet (made by Dailey’s mom–Colleen Cartwright

3 Hour House Cleaning–Linda Micetich

Immediately following the drawing of the tickets, Megan called all the winners to congratulate them.  Then it was a group effort to count all of the money made over the two days.  When Kenzi and Makenna read Megan the total, she was floored!!!  Thanks to the generous support of so many amazing people on Team Megan, she raised a total of…

$14,385.75

Megan is so appreciate to everyone who came out to support her garage sale, and she is so excited to send a check to the Children’s Cancer Therapy Development Institute and move that much closer to her $180,000 fundraising target.  This donation from the garage sale will put her current amount raised to just over $55,000.  Although she still has a ways to go, considering she has only been at this for a few months, she is making tremendous progress.  Of course, Megan is impatient because cancer doesn’t wait for us to come up with cure, so time is of the essence.  I have no doubt that Megan’s determination along with the tremendous support she continues to receive from everyone on Team Megan will result in success sooner rather than later.

Of course, now that her garage sale is completed, there is no time to rest because it is on to the next fundraising project.  She still has the Team Megan Bugg Golf Outing taking place on August 22nd at Nettle Creek Golf Course.  All 40 of the foursomes are filled, but there are still opportunities for corporate sponsorships by calling Tim Jezik at 815-679-8149.  We are so thankful to Tim for all of his work in organizing this event.  Megan is so excited about it!!!

The Morris Bakery is still selling these awesome cupcakes with a portion of the proceeds going directly to Megan’s fundraising efforts.  If you have never tried the Morris Bakery, you are definitely missing out.  This promotion will go until the end of July, so please stop by to support a great cause and get some awesome cupcakes.

Megan is also thrilled to once again partner with Ivory Ella on another childhood cancer awareness clothing line.  The design will be released in time for Childhood Cancer Awareness Month in September.  A portion of all sales will go to Megan’s fundraising efforts through CCTDI.

Childhood cancer had better watch out, because Megan is gaining momentum and plans to take this beast down once and for all.  Childhood cancer can be defeated…we just have to decide that the time is now.  Until next week…

 

Garage Sale for Childhood Cancer

It’s only been a month since Megan’s Gamma Knife Radiosurgery to treat a strawberry sized tumor at the base of her skull.  Although she has to wait until her next set of scans on August 24 and 25 to know for sure if the procedure was successful, she is not about to sit around feeling sorry for herself.  Instead, she has once again kicked her childhood cancer fundraising and advocacy efforts into full gear.  Megan is as determined as ever to raise the $180,000 it will take to fund the preclinical trial studies necessary to bring a very promising treatment for RMS to full clinical trial.  She has partnered with the Children’s Cancer Therapy Development Institute (CCTDI)and to date has raised over $40,000 towards her goal.  Megan knows it is a lofty goal, but with the help of the many kind and generous people on “Team Megan”, she knows she will eventually be successful.  She is hopeful that the gigantic garage sale she is planning for July 17 and 18 will be a huge step in realizing her dream.

We recently had the floor replaced on the main floor of our house.  Of course, that was the impetus our family needed to do some late spring cleaning.  While we were cleaning things out, Megan came up with the idea of holding a garage sale with all of the profits going towards her fundraising efforts through CCTDI.  Of course, as is typical with Megan, she started contacting friends and soon it became obvious that her garage sale would spill out of our three car garage and down our entire driveway.  This weekend, we worked with Megan to start going through her many items to get them organized for this huge event, which will be held this coming Friday and Saturday from 8:00 a.m.-4:00 p.m.  Here are just a few of the categories of items she has up for sale, as there are far too many to provide a full listing in this post…

• Baby Clothes
• Adult Clothes (mostly name brand)
• Kitchen Items (Many brand new and still in the box)
• Sporting Goods (Full youth golf sets, adult iron set, exercise equipment, large inflatable raft with oars, boxing gloves, baseball cards and much more)
• Furniture (oak kitchen table/chairs, entertainment centers, oak end tables and more)
• Seasonal Decorations
• Household Decorations
• Kids Toys and Games
• Luggage
• Power Equipment and Garage Supplies

To make it an event the entire family will enjoy, Megan will also have homemade cupcakes for sale, a 50/50 raffle, and a few other raffle items.  I was with her in the garage last night and saw that she is definitely pricing items to move.  I hope you are able to stop by, because not only will you have an opportunity for some great deals, but every dollar you spend will go directly towards Megan’s fundraising efforts to support childhood cancer research through CCTDI.  Here are a few pictures of Megan working to get ready for this weekend’s big event.

Besides planning for her garage sale, Megan has also been busy this week continuing to plan for other fundraising and advocacy events.  On Thursday evening, Megan was interviewed by another childhood cancer warrior who runs her own blog site.  She wanted to interview Megan as a special guest.  Megan was also so appreciative of the Morris Bakery in Morris, IL who held a special fundraiser this weekend where if you came in the store wearing yellow, they made a special donation to Megan’s fundraiser.  Megan is also very excited to once again work with Ivory Ella on the childhood cancer clothing line set to be released in time for Childhood Cancer Awareness Month in September.  Megan is also really looking forward to the “Team Megan Bugg Golf Outing” fundraiser for childhood cancer that will take place on August 22 at the Nettle Creek Country Club.  Although all of the golfing foursomes are filled, you can still participate in supper and the raffle for only $25.  Also, there are still opportunities for hole sponsorships and other corporate sponsorships.  All of the golf outing information is on this flyer, so if you are interested, please contact Tim Jezik at 815-679-8149.

Recently, Megan wrote an impassioned letter to the National Institute of Health (NIH) begging them to focus more time and resources on childhood cancer.  Megan was pleased on Friday when she received a response from a spokesperson for their organization.  Although the response was heartfelt and very thorough, it still didn’t address what she was asking for.  Essentially, the NIH answer to her was that they don’t allocate set amounts of money towards different types of cancer.  Instead, they evaluate submitted research studies and determine which are the most promising, and those are the ones that get funded.  Unfortunately, that’s they entire problem, and it’s why Megan is asking them to specifically allocate resources specifically towards childhood cancer.  Pharmaceutical companies, and therefore medical researchers, don’t focus on childhood cancer because there is not enough bang for the buck.  The researchers know that their best chance to get a research project funded is to focus on adult cancers because that is what the pharmaceutical companies are interested in.  As a result, without a concerted effort to focus specifically on childhood cancer, these kids will continue to be where they are today…which is raising money themselves to fund the very research that could potentially save their lives.  So while in the midst of receiving outdated and toxic treatments, mental challenges, and debilitating physical side effects, to give themselves the best chance at survival, these kids also must raise money to fund the research that could save their lives.  I just don’t get how that is okay with the decision-makers who hold the purse strings.  However, until the adults in the room start acting like adults, these kids will continue to be the responsible ones.  If you ever want a little motivation, spend a few minutes around one of these childhood cancer warriors and you will discover a entirely new perspective on life.  They are all so amazing.

Megan has definitely been busy and I don’t think that will end anytime soon.  She is as determined as ever to not only reach her goal of raising $180,000 to support childhood cancer research, but to continue raising awareness and funding until no more kids have to go through what childhood cancer has put her through for the past five and a half years.  This nightmare needs to end not only for Megan, but more importantly, for all kids.  No kid and no family should have to endure the physical and mental pain inflicted by this evil beast.  We have to do better for our kids!!!

Speaking of Megan’s own personal battle, she had her monthly appointment for blood work and a physical exam this past Thursday.  Although these appointments don’t effect her as severely as her three month scans, she is always nervous the day before she goes in for her monthly exams.  Fortunately, she loves all of the amazing medical professionals at the CDH oncology clinic, so that makes the process a little easier.  As is the norm with most all childhood cancer survivors, every ache and pain cause anxiety that the beast may have returned.  Prior to her appointment, Megan had been having some back and ankle pain, and she was also worried that she felt something abnormal on her upper leg.  As a result, it was very difficult for her to sleep on Wednesday night, but luckily her appointment was early on Thursday morning and Dr. Kar gave her a clean bill of health!!!  When I got home from work on Thursday evening, Megan was a completely different person.  Seeing that weight lifted off her shoulders for even a short time was so refreshing.

It will be a very busy week for Megan as she gets ready for her big benefit garage sale on Friday, July 17 and Saturday, July 18 from 8-4.  I hope you are able to come out and support Megan’s latest effort to end childhood cancer.  It should be a fun weekend!!!

Until next week…

“It’s Not Rare!!!”

Megan is in a really good place right now.  It’s been nearly 6 weeks since she learned she had relapsed for the fourth time with a strawberry-sized tumor at the base of her brain.  It’s been four weeks since her medical team settled on a treatment plan that called for gamma-knife radiosurgery and holding off on any experimental chemotherapy until after her scans in late August.  It’s been about three and a half weeks since her gamma-knife radiation procedure was completed, which the radiologists believed was successful, but we won’t know for sure until after her August scans.  Although I’m sure her next set of scans are in the back of her mind, for a childhood cancer survivor, August is an eternity from now.  Since Megan is feeling good physically, she is not about to let any upcoming “scanxiety” keep her from living in the moment.  Therefore, she has been busy living her life to the fullest each day by hanging out with family and friends, working part-time at the dance studio, baking whenever she can, and just generally trying to finally live the life of a “normal” teenager.  In short, she is busy winning each day as it comes.  However, as has been the case with Megan, her greater cause is never far from her mind, because when she is feeling good, her childhood cancer advocacy efforts shift into high gear.

On Saturday morning, Megan came downstairs from getting a little extra sleep after a really busy Friday.  One of the first things she said was,

“Dad…you know what I still don’t understand?  I don’t get how people still call childhood cancer rare?  How is 43 new kids per day rare?”

We then had a discussion about how pharmaceutical companies are corporations, and as such, their primary goal is to make a profit, and for whatever reason, they have not viewed childhood cancer as a profitable venture for them.  That’s why, on average, the FDA approves 12 new adult cancer treatments per year, but there has NEVER been an FDA approved primary treatment for RMS (Megan’s family of childhood cancer).  When corporate American can’t help, that’s when we would normally expect the Federal government to step up and assist our most valuable resource…our kids.  Unfortunately, our legislators continue to fail these kids as well by allocating less than 4% of all Federal cancer research funding toward childhood cancer.  It is for these reasons that Megan and her childhood cancer warriors have taken it upon themselves to make a difference.  They are tired of waiting on the adults in the room to take action, so instead, these kids fighting for their lives have had to become the responsible ones.  It seems so unfair, but as Megan says, you can either sit around and feel sorry for yourself, or you can make a difference.

Lately, it seems that Megan gets another iron in the fire daily when it comes to her advocacy and fundraising efforts.  Let me give you a quick rundown of what she has in the works.

1. The First (hopefully annual) “Team Megan Bugg Golf Outing” is set for August 22 at the Nettle Creek Country Club.  Thanks to Tim Jezik who came up with the idea and is organizing the event.  It’s amazing that all of the foursomes were filled in about a week.  There is still an option to participate by coming to the golf course for lunch and participating in the raffles and auction…all for only $25.  Tim is also still accepting corporate sponsorships and any raffle items.  You can contact Tim at 815-679-8149.  Megan is really excited about this event, and she is looking forward to riding around in a golf cart to thank everyone for participating.  All funds from the this event will go towards Megan’s fundraising efforts through the Children’s Cancer Development Therapy Institute, where she is working to raise $180,000 to fund the preclinical trials necessary to bring a very promising therapy for RMS to full clinical trial.
2. Just a couple days ago, Megan was once again contacted by a clothing company called Ivory Ella regarding a new childhood cancer-themed clothing line coming out in time for Childhood Cancer Awareness Month in September.  Megan has worked with this company for the past two years on a childhood cancer clothing line, and she is so excited for this year’s version.  This is such an amazing way to not only raise funds for her fundraising efforts, but to also bring more awareness to the issue of childhood cancer.  Megan will soon be participating in a photo shoot as she will model the clothes on the Ivory Ella website.  Once again, a portion of every sale will go directly to Megan’s fundraising efforts.  Here is a picture of Megan modeling last year’s collection.
3. Megan is also planning a big garage sale where all of the proceeds will go towards her fundraising efforts through CCTDI.  Tentatively, she is looking to hold the event the weekend of July 17, but we are still trying to finalize the details.  I will be sure to let everyone know of the finalized date on this site as well as the Team Megan Facebook page.  She has been busily going through items in preparations for what she hopes is a very successful garage sale.  By the way…while Megan was cleaning out some things from the past five years, she found this wig that was donated to her right after she lost her hair for the first time.  Megan has never worn a wig, but she got a kick out of trying it on with the accompanying hat 🙂

I’m sure there will be more to come, but these three events are going to keep her very busy for the rest of the summer.  To date, Megan has raised about $40,000 of the $180,000 necessary to fund the preclinical studies necessary to get this very promising RMS therapy to full clinical trial.  As I have mentioned in previous posts, should Megan ever relapse again, the treatment she is funding is one that could actually be used to treat her.  Once again, it’s both inspiring and sad to see these brave childhood cancer warriors out there fundraising for their own treatments.

For the past couple weeks, Kenzi has been back home from Madison, which means she and Megan have been busy with coffee runs, crafts, baking and just generally hanging out.  Here are a few pictures of them from the past week.

We hope everyone had a very happy July 4th holiday.  With all of the COVID cases out there, we are still being careful with large crowds, so for the holiday we invited Uncle Todd and Gina over for a pool party cookout.  It was great to see them and we had a lot of fun.  Megan made patriotic-themed cake balls, and decorated this fun flag dessert.

Megan has been helping a lot with the flowers and the garden this year.  A few days ago she pulled a carrot and was excited that it was actually big enough to eat 🙂

It’s been a very good week for Megan as she is feeling as physically healthy as she has been in a long time, and as we have learned over the years, when she is feeling good, childhood cancer is in big trouble!!!  Until next week…

Only One Acceptable Ending

For five and a half years, childhood cancer has dominated Megan’s life.  It has also ruled our entire family’s lives, and that’s not Megan’s fault, because that’s just the nature of this evil beast.  We have tried so hard to follow Megan’s lead by staying positive and being extra thankful for each day…but the reality is that childhood cancer is always there.  That feeling is not unique to our family, because from the many connections I have made in the childhood cancer arena, all families share this to some degree.  Of course, the impact on our family pales in comparison to the anxiety Megan lives with every single day of her recovery.  I continue to marvel at the strength, determination and grace she consistently exudes every step of this incredibly difficult fight.  When it would be perfectly natural for her to curl up in her bed; shut herself off from the world; and just feel sorry for her predicament…that has never been Megan’s style.  Of course she has her moments when the gravitas of the moment gets the best of her.  The amazing thing is that somehow, Megan always manages to dig down deep and find the silver lining in the hand she has been dealt.  It’s almost as if she is a master poker player and you can never tell if she is holding four aces or a pair of twos, because no matter what, she plays the hand with the same positive energy and keeps that same infectious smile on her face.

Over the past couple of years, I have come to realize that one of the ways Megan copes with her situation is to focus on something larger than herself.  Once Megan got through her first 54 weeks of treatment and was declared in remission, she started to reach out to other childhood cancer warriors from across the world.  She listened to their stories; could sympathize with their pain; encouraged them with her own story of triumph; and made them promise to never ever let cancer win.  As she heard their stories, she began researching childhood cancer and learned the painful truth that our country has essentially cast aside kids like her.  It was painful to learn that 43 kids in the United States alone are diagnosed with childhood cancer every day.  It was even more disheartening to learn that the large pharmaceutical companies do not invest in childhood cancer research because they do not see these kids as a profitable venture.  Instead they focus on adult cancers, and as a result there are on average 12 new drugs that are FDA approved each year to combat adult cancer.  By contrast, only 8 drugs have been FDA approved in total since 1978!!!  Megan was devastated when she learned that for her type of cancer, there has NEVER been a primary drug approved for treatment EVER!!!  As a result, the disease-free survival rate for Megan’s type of cancer has remained unchanged for 47 years!!!  Think of the progress that has been made in so many areas of medicine during that time, and yet the treatment of childhood cancer remains virtually the same as it was when I was a child.  If I had been diagnosed with Megan’s type of cancer when I was 13 years old, I would have been treated with the same drugs Megan was treated with…and I’m 53 years old.  Can you imagine if the treatment for heart disease, diabetes, AIDS, and adult cancers were still treated the same as they were 47 years ago???  Thankfully, modern medicine has drastically changed the survival rates for so many medical conditions.  All Megan and her friends are asking for is the same opportunity.

What’s amazing about kids like Megan is that they are not just sitting at home complaining and asking for a government handout.  Instead, they are doing their part.  They are just asking for the Federal government to meet them somewhere in the middle by committing more than the 4% of all Federal funds to research cancer that is currently allocated to researching childhood cancers. Over the past three and half years, Megan has raised almost $250,000 to support childhood cancer research.  If she is successful in her current fundraising effort through the Children’s Cancer Therapy Development Institute (CCTDI), she will have raised nearly $400,000 in her effort to end childhood cancer.  As a reminder, Megan is currently partnering with CCTDI to bring a very promising treatment for ARMS to clinical trial.  Getting a drug to clinical trial can be a long process, so there is a tremendous amount of pre-clinical trial studies that must be completed.  Megan is currently working to raise $180,000 to bring this drug to clinical trial that could treat both Ewings Sarcoma and Alveolar Rhabdomyosarcoma.  If CCTDI is successful in getting this drug through a full clinical trial and receives FDA approval, it would be a landmark achievement in the potential treatment of this vicious disease.  In fact, this is a drug that could actually be used to treat Megan’s cancer. So what Megan is really doing is fundraising for her own treatment.  I have said it so many times and I will say it again…In a country as advanced and wealthy as ours, how is it that teenage kids fighting for their lives are also simultaneously fundraising for their own potential treatments?  Doesn’t that seem more than a little barbaric for the 21st century in the United States of America???  Surely we can all do better for these brave kids.

Besides raising funds for research, Megan and her friends have also committed to raising awareness for childhood cancer whenever the opportunity arises.  Megan has twice been to Washington, D.C. to lobby her legislators during CureFest weekend.  She has met with all of her local State and Federal legislators.  She has even written a heartfelt letter to President Trump pleading for his help (she is still awaiting a reply).  Just this week, Megan started a petition on Change.org asking the Federal government to give childhood cancer more than the current 4% of the total money allocated for cancer research.  I know she would appreciate it if everyone on “Team Megan” would help her raise awareness by signing her petition.  You can access Megan’s childhood cancer awareness petition HERE.

Although Megan has still suffered from the occasional side effects of treatment (i.e. headaches, digestive issues, fatigue, etc.), it’s been a good week for her. On Saturday, Megan drove to Naperville to spend the day with her good friend Caitlyn.  Today, Uncle Todd and Gina came over for lunch and swimming, and Megan invited her friend Sophia to spend the afternoon with her.  Megan has also started going back to work part-time at the dance studio, so slowly but surely, she is bouncing back from her latest relapse.  Also, Kenzi is home, which always means lots of baking, Starbucks, and general companionship.

Speaking of Kenzi, we recently had the floor redone in our house, so we are in the midst of some redecorating.  We have an accent wall in our living room that Deb wanted repainted a different color.  When I got home from work on Friday, Kenzi was well into getting this project done 🙂

Kenzi also made a killer charcuterie tray for our lunch with Uncle Todd and Gina today.

When we were in the north woods of Wisconsin, our family enjoyed a campfire pretty much every night.  Since we’ve been back home, we have frequently duplicated that trend on our back patio.  The other night, Megan decided to bring Boo Boo Kitty out to enjoy it with us 🙂

I noticed that Megan recently changed the cover photo on her Facebook page.  This is one of my favorite pictures of Megan because I think it so perfectly captures her essence.  I remember when she had these pictures taken, she said she wanted to show every young female fighting cancer that even without hair, you can be beautiful and strong.  These pictures were yet another example of what I always say about Megan’s Journey…Megan may have cancer, but cancer has never had her.

In Megan’s opinion, there is only one acceptable ending to her journey.  It is not enough that she wins her battle with cancer, because she is looking for a much bigger win.  The only acceptable ending is that childhood cancer is defeated once and for all.  One thing I have learned over the past five and half years is to never doubt her determination.  Childhood cancer…your days are numbered.

Until next week…

Walking With Nature

With Megan’s fourth relapse being discovered on May 19, the last month has been an anxiety-ridden blur of activity.  After her scans showed the tumor at the base of her skull, there was a whirlwind of action as we worked with Megan’s medical team and talked with doctors from all over the country.  After multiple emails, phone calls and video conferences, we finally settled on a treatment plan that included a Gamma Knife Radiosurgery procedure that was completed on Tuesday, June 9.  After consulting with Dr. Hayani, Megan agreed that the best course of action was to get the Gamma Knife procedure finished and hold off on any experimental chemotherapy treatments until after her next set of scans in late August.  Of course, the hope is that the Gamma Knife procedure was successful and Megan’s next scans will show no cancerous activity.  In the meantime, Megan has been desperately trying to regain some normalcy in her life, and this past week really helped her cause.

Anyone who reads this blog knows that Megan loves to travel.  Since she was originally diagnosed on December 30, 2014, traveling has been a means of finding relief from the constant anxiety and trepidation that accompany a survivor of childhood cancer.  Unfortunately, the COVID-19 pandemic has relegated any significant travel to traditional tourist destinations too risky for Megan, so she has felt grounded for the past few months.  Luckily, one of Deb’s friends came through with a tremendous offer that fit perfectly into our schedule while keeping Megan as safe as possible from the pandemic.

One of Deb’s friends, Mike, has a beautiful cabin on a lake in the middle of the north woods of Wisconsin.  It is remote and sits right on a beautiful little lake.  Megan had an appointment with Dr. Hayani on Monday morning to make sure she was fully recovered from her Gamma Knife procedure, and once she got a clean bill of health, we packed up and hit the road for the 6 hour trip north.  When we arrived, Mike was there to greet us and he stayed with us for the first couple days to show us the lay of the land and teach us how to use all of his amazing toys.  I can honestly say it has been a very long time since our family has had that much fun together and been so relaxed.  For a blessed week, I think Megan was able to put her battle behind her and become one with the nature around her.  Our week at the cabin was definitely one of those beautiful moments we will cherish forever.  Thanks so much to Mike for his kind generosity!!!

Here is our week in the woods in pictures.

One of the best things about this vacation was that we were going to a place Sparky was welcome. He slept on Megan’s lap pretty much the entire 6 hour trip.

While we were at the cabin, Sparky pretty much continued his constant connection to Megan 🙂

We found a restaurant about 15 minutes away from the cabin that had outdoor seating with a spectacular view.

Here is another picture from the outdoor restaurant with the stream in the background.

Here is a picture of Megan and Deb with Mike at that same outdoor restaurant.

One of Megan’s favorite things was riding in Mike’s UTV around the beautiful trails in the north woods. We saw so much wildlife and beauty on the trails. It was really incredible.

I can’t tell you the last time we all ate breakfast, lunch and dinner together every single day. This is a lunch that Megan put together at the cabin.

It was great having Nick with us, because I am not much of a fisherman. He was so patient helping the girls with their catches, like this big bass Kenzi caught.

Megan caught more than her share of fish as well…and there is Nick right behind her ready to take care of it for her 🙂

Mike had all of the possible water activities for us from canoeing to tubing behind his speed boat.  We all had a blast!!!

Here are Kenzi and Megan getting started on the tube.

That’s Nick and Kenzi on the tube with Megan keeping a close watch.

Kenzi and Megan out for a peaceful paddle on the canoe.

Kenzi and I also took a turn on the kayak.

You can’t beat Paul Bunyan’s for breakfast!

We had a campfire every night. Here is Megan with her own S’mores concoction where she used two chocolate chip cookies instead of graham crackers 🙂

Usually, at the end of a vacation, I am ready to head home and return to normalcy.  However, I have to admit that I was a little sad when Friday came and we had to leave this little slice of paradise in the north woods.  Not only was it so relaxing, but our family made memories to last a lifetime.

Of course, Boo Boo Kitty was very happy when Megan returned home 🙂

Happy Father’s Day to all of the Dads out there.  Please do me a favor and give your kids an extra hug today.  Megan’s Journey has taught me the importance of appreciating each and every day you have with your kids.  I am so fortunate to have two amazing daughters, and the greatest joy of my life is having them call me Dad.  Deb and the girls took good care of me this Father’s Day.

Thanks to Tim Jezik, the first ever “Team Megan Bugg Golf Outing” to raise money for childhood cancer research is getting bigger by the day.  All of the foursomes are already sold and there is a waiting list for the August 22 event being held at the Nettle Creek Golf Course.  There is still an option to participate by joining us for dinner and the raffle following the golf, and the cost to do so is only $25.  If you are interested in this option, please contact Tim Jezik at the phone number below.  Also, Tim is still accepting corporate sponsorships, hole sponsorships, and donations for the raffle (i.e. gift baskets, gift cards, or any other items).  Megan will also be out and about in a golf cart to meet, greet and thank everyone who participates.  All proceeds from this event will go towards Megan’s fundraising efforts through the Children’s Cancer Therapy Development Institute (CCTDI).  Megan is working with them to raise $180,000 to fund the pre-clinical research necessary to get a very promising treatment for Alveolar Rhabdomyosarcoma (ARMS) to full clinical trial. It is unacceptable that NO new agents have emerged for testing in clinical trials for high-risk or relapsed RMS in the last 6 years. As a result, the disease-free survival for ARMS have remained unchanged for 47 years!!! It is disheartening to know that NO primary drug approvals for RMS have occurred in history EVER…and only 8 drugs developed for any childhood cancer have been FDA approved since 1978. By comparison, 12 or more adult cancer drugs on average are FDA approved annually.  Megan wants to partner with CCTDI to change that, and with your help and support, she can reach her goal and help so many of these brave childhood cancer warriors.  We hope you can find a way to support the “Team Megan Bugg Golf Outing” on August 22.  Thanks so much to Tim Jezik for all he is doing to make this exciting event happen.

It’s been a very good week for Megan and our family.  Until next week…

“In every walk with nature, one receives far more than he seeks.”       John Muir

 

 

 

Gamma Knife Radiosurgery…Done

On May 19, Megan learned the devastating news that she had relapsed from Alveolar Rhabdomyosarcoma (ARMS) for the fourth time.  Her brain MRI showed that she had a mass at the base of her skull in her Clivus bone, which a PET scan two days later confirmed was cancerous.  Fortunately, the PET scan also showed that this was the only cancerous activity in Megan’s body, which was very good news.  Since that time, we have been talking to Megan’s medical team, as well as doctors across the country, to determine the best treatment option for her.  Since Megan has relapsed more than once, there is no clinically proven treatment for ARMS, which means determining the best course of action is not an exact science.  However, after numerous phone calls and video conferences, Megan felt comfortable with the recommended treatment plan, which was implemented this past week.

At this point, she is not going to receive any chemotherapy treatments.  Although there are some experimental options out there, Megan’s current relapse would make it very hard to determine whether or not the chemotherapy drugs were actually successful.  Since the chemotherapy treatments available to Megan are experimental, their success must be measured against an active tumor(s).  Megan only has the single tumor at the base of her brain, and due to its precarious location, her medical team felt it needed to be treated immediately with radiation.  Therefore, if she received chemotherapy, there would be no way to determine if the tumor shrunk due to the radiation or the chemotherapy.  As a result, it was decided that a decision on chemotherapy would wait until the results of her next scans in late August.  That meant the only treatment on her existing tumor would be Gamma Knife Radiation.

Once it was decided that Megan would move forward with the Gamma Knife procedure, it then became a matter of where she could receive the treatment this quickest.  After talking to numerous medical facilities, we settled on having her procedure done at Alexian Brothers Hospital in Elk Grove Village, IL.  Not only was the medical team awesome, but they also expedited her on the schedule so she could get the procedure done last Tuesday, June 9.  Although Megan was a little nervous about the procedure, she was relieved that it would be completed so quickly.

On Tuesday morning, we had to leave our house at 4:30 a.m. to get to the hospital by 5:45 a.m.  Fortunately, they let us stay a few minutes with Megan until they were ready to take her for her scans and anesthesia.  She had to get a CT scan of her head as well as multiple MRIs, but since the entire process was under anesthesia, Megan’s claustrophobia was not an issue.  While Megan was under anesthesia, the medical team spent two hours analyzing her scans to make the Gamma Knife Radiosurgery plan.  They also attached the halo to her head using four screws into her skull.  Here is a picture of the nurse (post-surgery) treating one of the spots where the halo was screwed into her head.  Of course, Megan is watching through her phone so she knows what is going on 🙂

Then it was another two hours to complete the Gamma Knife procedure.  We were forced to leave Megan at 6:45 a.m. and we didn’t see her again until about 2:30 p.m.  It seemed like an eternity, but the nurse kept in close contact with us, so we knew she was doing okay.  When we finally got to see Megan, it was amazing how upbeat she seemed after such a long ordeal.  When we saw her, she was already sipping on a Starbucks drink and eating a granola bar…and of course, she was also wearing that smile to let us know she had this all under control.

Following the procedure, the medical team walked us through the entire process by showing us the scans of Megan’s tumor and the Gamma Knife treatment area.  They said it was a tricky procedure to plan due to the tumor being so close to some very important real estate in her head (brain stem, optic nerve, etc.), but they felt very positive that they had successfully treated the entire tumor.  We won’t know for sure until her next set of scans in late August, but from the mood of the doctors, they seemed very pleased with the process.  After that, we headed for home so Megan could get some rest.

Tuesday night, Megan was still riding the high from getting the Gamma Knife procedure completed.  She was also very excited that the doctors felt like they were able to treat the entire tumor.  That evening, Megan ate a regular supper and she was even up for a visit from her buddy, Makenna Emerson.  However, the next day, the side effects of her long procedure started to hit her.

Of course, there are side effects of being under anesthesia for seven hours, but they also had to give Megan a steroid to keep the swelling down in her head.  During previous chemotherapy treatments, Megan has had the same steroid and it always makes her skin red and she feels very hot.  Unfortunately, the combination of the anesthesia and the steroid really caused her some issues on Wednesday and Thursday.  On Wednesday, it helped that her sister, Kenzi, drove back from Madison to see her, but she still spent most of Wednesday and Thursday sleeping and just feeling generally lousy.  She started to feel better on Friday, but even today she is still just not feeling like herself.  Hopefully she continues to recover, but of course, it never happens as fast as Megan wants.

While Kenzi was home, the girls decided to do some baking for Makenna’s birthday on Friday.  Here they are making their sunflower birthday cupcakes.

And of course, they had to make some time to hangout with BooBoo Kitty 🙂

While Megan recovered this week, there continue to be so many amazing people who seem to know just when her spirits need a lift.  A group called “Sprinkles of Joy” showed up today with a variety of fun little gifts that Megan had so much fun opening.  It was so kind of them to think of Megan and bring some joy to her during these difficult times.  Our family continues to be so thankful for all of the incredibly kind people out there.

Speaking of kind people, I received a phone call from a local community member who said that he really wanted to do something to help Megan’s fundraising efforts through the Children’s Cancer Therapy Development Institute.  Megan is working so hard to try and raise $180,000 to fund the pre-clinical studies necessary to increase the chances of a very promising ARMS treatment to reach clinical trial.  If approved for use, this would actually be a drug that Megan could use for treatment, so of course she is desperately trying to raise funds quickly.  I could go on forever about how crazy it is that due to a lack of caring and attention towards childhood cancer that kids like Megan are out there trying to raise money to fund the very research that could save their lives…but that rant will have to wait until a later post.  Thanks to the generosity of so many amazing people, Megan is off to a great start, but she still has a long ways to go.  When Tim Jezik called, he said that he wanted to put together a “Team Megan Bugg Golf Outing” with all of the proceeds going towards Megan’s fundraising effort.  Well…what started off small has taken off in less than a week.  Believe it or not, in a matter of three days all of the available foursomes were taken, but…there are still many opportunities to sponsor the event or make donations of prizes for the raffle.  The event has also added an option that for $25, you can come join us for supper and the raffle/auction event.  If you are interested in that option, please contact Tim Jezik at the phone number on the flyer.  People can also still make direct donations to Megan’s fundraising efforts through the Children’s Cancer Therapy Development Institute at

https://cc-tdi.kindful.com/honor-pages-2017/team-megan-bugg#

Tim Jezik and Megan have been talking every day as Megan is very excited about this event.  If you are interested in supporting the “Team Megan Bugg Golf Outing” to raise funds for childhood cancer research, all of the information can be found on this flyer.  Thanks so much to Tim Jezik and his family for making this event happen on August 22.

It’s been a long, but successful week for Megan.  As she works to overcome her 4th relapse of ARMS, she still remains incredibly positive.  Megan’s positive attitude coupled with the amazing support of everyone on Team Megan means that cancer still doesn’t stand a chance.  Megan will win…it’s only a matter of time.

Until next week…

 

The Treatment Plan

The last couple of weeks of been long ones for Megan as she awaited the final decision on her treatment plan.  She knew that Gamma Knife Radiosurgery was definitely going to happen, but it took some time to choose a doctor and a location where the procedure could get done quickly.  We had also been talking with multiple doctors regarding whether or not Megan would undergo further chemotherapy.  Finally, after a grueling couple weeks, we have a treatment plan to address Megan’s 4th relapse.

As a reminder, on May 19, Megan was told that her brain MRI showed a mass had started growing in her Clivus bone, which is located just beneath her brain.  Fortunately, the MRI also showed that the growth was contained within her Clivus bone and had not moved to her brain or any of the other sensitive nerves or glands in that area of her head.  On May 21, Megan had a full body PET scan to make sure this relapse had not metastasized again, and thankfully, the scan showed that her cancer was isolated in this single location…which was the best news we could have hoped for.  Since that time, Megan has been working with her medical team, as well as with doctors from across the country, to determine the best course of treatment.

As I mentioned in last week’s post, when a child is diagnosed with Stage 4 ARMS, there is a standard 54 week chemotherapy protocol.  For a first relapse of ARMS, there is also a 36 week fairly standard chemo protocol that a child will receive no matter where in the country that child receives treatment.  It’s the second relapse and beyond that are much more difficult to treat because there is no clinically based standard treatment protocol.  Due to a severe lack of attention and funding for childhood cancer, relapse #2 and beyond are very challenging and take much more time to determine the proper treatment.  Due to lack of a standard treatment plan, different doctors have different chemotherapy combinations that they have tried and found some success with.  For the past two weeks, we have been talking to these doctors and trying to determine not only which chemotherapy treatment combo to use, but even if she should use chemo at all at this point.  Remember, Megan’s body has already endured a ridiculous 114 weeks of intense chemotherapy, so giving her body more is not a decision to be taken lightly.

After multiple discussions with oncologists, Megan’s doctors determined that at this point, she should undergo the Gamma Knife Radiosurgery but hold off on any chemotherapy until after her next scans in mid August.  The reason for that decision was due to Megan only having the single tumor in her head, and that tumor being treated with the Gamma Knife procedure.  Since any chemotherapy treatment combination she tried would be basically experimental, her oncologists would need an active tumor to monitor to determine if the chemotherapy was actually working.  Since the hope is that Megan’s tumor is killed via the Gamma Knife Radiosurgery, there would be nothing to measure whether or not chemotherapy was effective.  Absent an active tumor to monitor, her oncologists wouldn’t know how long to give her the chemotherapy and whether or not it was working.  Therefore, the determination was made to wait until after her August scans, with the hope being that the Gamma Knife procedure worked and there are no other signs of cancer in her body.  However, if something showed up on her next set of scans, as long as the tumor was not in a highly sensitive spot like her current mass, her oncologists would begin her on another chemotherapy combination and be able to monitor the drugs’ effectiveness.  Of course, we believe that after Megan gets her Gamma Knife Radiosurgery, she will never need chemo again!!!  When you are fighting this battle, you have to keep thinking positive!!!

Speaking of the Gamma Knife Radiosurgery, it was also quite an ordeal trying to find a place that would get her procedure done quickly.  Megan is understandably quite anxious about there being a strawberry sized tumor so hear her brain.  Even though the radiology oncologists we talked to tried to assure her that waiting a couple of weeks would be okay, Megan was not at all convinced…and I can’t say I blame her.  After considering driving all the way to the Cleveland Clinic to get it done (that radiology oncologist was so amazing!!!), we decided to have the procedure done at Alexian Brothers Hospital in Elk Grove Village.  They actually have a dedicated Gamma Knife center and we met with their team on Friday.  They were extremely nice, but the best news was that they already had Megan set up for the procedure this Tuesday morning at 5:45 a.m., which is two weeks sooner than anyone else could get her in.  Megan was just relieved that this process would be completed so that piece of understandable anxiety could be put behind her.

So, on Tuesday morning, we will be leaving our house at 4:30 a.m. to make sure we get to the hospital on time.  Megan will go under anesthesia and then they will conduct another brain MRI.  After that, they will screw the halo on her head and prepare her for the Gamma Knife procedure, which will take about an hour and a half.  After that, she will be in recovery and then ready to go home.  The entire process should take about 4-5 hours.  Unfortunately, due to this hospital’s COVID-19 restrictions and Megan being 19 years old now, Deb and I are unable to accompany her in the hospital.  I think we were more upset about that than Megan, but she’s been through this so many times that I know she will be okay.  At the tender age of 19, Megan has already been through more trials and tribulations that most all adults will ever encounter in their lifetime.  She is one tough young lady, and I could not be more proud of her.

As Megan tried to continue keeping her mind busy this week, she found some wonderful distractions.  Deb’s best friend from her childhood, Wendy, lives in New Jersey.  She and her two daughters, Tori and Janna, were near Chicago to see relatives, and on Wednesday they made a trip down for a visit.  Then later in the week, Megan and Deb traveled north to visit with them.  Megan loved visiting with them…and to make matters even better, Wendy’s relative had just gotten a Burnese Mountain dog puppy.  Of course, Megan could pass up a little puppy love.

Janna, Megan and Tori

Earlier this week, Makenna Emerson stopped by for a visit and delivered a present from their family.  Megan was pretty fired up to get her new kitty pool float 🙂 Thanks neighbors!!!

Everyone knows Megan is a cat lover.  She recently decided to add to her collection of cat toys by buying an outdoor cat tent so her kitties could be with her when she was out by the pool.  Today was the unveiling of her new toy, and here are a couple pictures of the event.

At first her cats were a little hesitant to be outside…

So she decided to join then in the tent 🙂

We continue to be amazed by the love and support Megan continually receives as she fights this awful battle.  This week, that feeling was just reinforced by an amazing young boy named Lukas.  Lukas received $65 for his birthday and he told his parents that he wanted to donate it to Megan’s fundraiser to help her fight childhood cancer.  His parents generously matched his donation.  Lukas stopped by in person to kindly deliver his selfless and extremely generous gift to Megan.  It’s kids like Lukas that continue to give me so much hope for the future.  Thanks Lukas!!!

Speaking of fundraising, Megan’s childhood cancer fundraiser through the Children’s Cancer Therapy Development Institute (CCTDI) is still open.  As a reminder, she is trying to raise $180,000 to fund a preclinical trial for a very promising treatment being tested at CCTDI.  Thanks to the generosity of so many amazing people, Megan is making tremendous progress, but she still has a long ways to go.  Had the money been provided by the pharmaceutical companies or the Federal Government (like it is for adult cancers), it would have been very likely that this promising treatment option would be available for Megan should she need it.  However, as is so often the case with childhood cancer, the funding has not been there and in the meantime, more kids continue to needlessly suffer.  Megan wants to change that so no more kids have to go through what she has endured over the past five and a half years.  Her online fundraising website can be found at

https://cc-tdi.kindful.com/honor-pages-2017/team-megan-bugg#

As you have done so many times before, we are counting on everyone from “Team Megan” to send positive thoughts early Tuesday morning as Megan undergoes her Gamma Knife Radiosurgery.  We know that all of your support along with Megan’s positive attitude and determination will assure that this procedure will kill this tumor once and for all.  Cancer is no match!!!

Until next week…

Waiting on the Treatment Plan

On May 19, Megan received the devastating news that she had relapsed for the 4th time.  Her brain MRI showed a mass under her brain that was dormant on the last scan, but this time showed that it had doubled in size.  A PET scan on May 21 confirmed that the mass on her clivus bone is active and will require treatment.  Although that was really tough news for Megan, the positive from the PET scan was that this tumor seems isolated, which makes it more treatable.  When Megan first learned that she had relapsed again, she was devastated, but in typical Megan fashion, she quickly dusted herself off and started thinking about her treatment options.  Although we love her medical team at CDH, Megan wanted to reach out to Dr. Walterhouse at Luries Children’s Hospital, Dr. Anderson at the Cleveland Clinic, and Dr. Keller at the Children’s Cancer Therapy Development Institute.  Now we are in a holding pattern as we wait on a recommended course of action.

The one thing we are certain of is that Megan will have to undergo gamma knife radiosurgery.  Because of the location of Megan’s tumor, it would be too risky to surgically remove the mass.  Typically, Alveolar Rhabdomyosarcoma (ARMS) tumors respond well to radiation, which Megan has had many times in the past…and thankfully it has been successful every time.  Due to the tricky location of her current tumor, her radiologist team is recommending gamma knife radiosurgery, which is a different type of radiation.  Gamma knife radiosurgery uses specialized equipment to focus about 200 tiny beams of radiation on a tumor with extreme accuracy.  Although each beam has very little effect on the tissue it passes through, a strong dose of radiation is delivered to the spot where all the beams meet…the tumor in Megan’s head.  Obviously, precision is of the utmost importance, which means they would need to screw a halo into Megan’s head and then lock her head down for about an hour and 45 minutes for the procedure.  Given Megan’s past claustrophobia issues that have been exacerbated through this five and a half year ordeal, Megan will understandably need to go under anesthesia to be able to handle this procedure.  The good news is that this is a one and done procedure, so she should not need any further radiation treatments on this tumor once the gamma knife procedure is completed.  Megan is hoping to get this scheduled as soon as possible, which would leave her with the next unanswered question…whether or not further chemotherapy is warranted?

When a child is diagnosed with Stage IV ARMS, there is a pretty standard 54 week chemotherapy protocol that is used across the country.  When an ARMS patient first relapses, there is also a fairly standard 36 week chemotherapy treatment that is used across the country.  However, due to a lack of funding for further research, there is no standard clinically proven treatment protocol for subsequent relapses of ARMS.  For second relapses and beyond, it’s why determining the best course of action takes a little more time.  During Megan’s previous relapse, she used a chemotherapy cocktail that Dr. Walterhouse at Luries had found some success with.  It worked well for Megan as it effectively killed her tumors, but it also caused some serious lung damage for her, which meant that she was only able to complete 24 weeks of this treatment instead of the prescribed 36 weeks.  For this fourth relapse, Megan has been in contact with multiple doctors and all of them have generously provided various options that she could consider.  What Megan is trying to do is to get the doctors she is speaking with together on a conference call to discuss and help her determine the most effective course of action.  At this point, we are not even sure if further chemotherapy is warranted, and if so, which option to pursue.  We are very hopeful that we get some direction on Monday or Tuesday because Megan could really use the peace of mind of knowing what she needs to get mentally prepared for.  Whatever it is, I have no doubt that she will attack it with her usual determination and never quit positive attitude.  It’s been such a long road for her that I really don’t know how she continues to stay so positive and motivated.  Her mental toughness coupled with her positive outlook on life is just amazing.

Although Megan has been busily contacting and talking to doctors, she is still in a bit of a holding pattern, which means she has been trying hard to keep herself occupied.  The busier and more engaged she is, the less time her mind has to wander towards the uncertainties of cancer and her upcoming treatment.  Here are a few pictures from her week.

Usually Megan is a baker, but lately she has been venturing into cooking more meals. Here is a pasta dish she made using chickpea pasta. It was really good!

This spring, Megan has really become interesting in gardening…especially flowers. Here she is with one of the Hibiscus plants we replanted by the pool.

Megan has been wanting to plant strawberries, so she and I built our own strawberry planter out of an old pallet.  Megan helped during the construction process and also helped to get the strawberries planted.  It was really a fun project.

On Friday afternoon, she decided that the house numbers on our mailbox needed to be repainted, so she grabbed her black paint and brushes to complete that project.

After some hard work, there is nothing better than hanging out in the hammock that Kenzi got her for her birthday 🙂

Megan’s good friend Emma picked her up on Friday and took her to Starbucks for coffee. Megan was pretty fired up that her Vizsla, Rylee, came along for the ride 🙂

Since the weather was so amazing this weekend, Megan wanted to get out into nature for a bit. We headed to the canal in Morris for a quick nature walk. It was absolutely beautiful!

On Saturday, Megan met up with her good friend Caitlin Cannon. Megan said it was so much fun to just sit outside in the beautiful weather, drink Starbucks, eat Mod Pizza, and talk with Caitlin for the entire afternoon.

Even though Megan is dealing with a cancer relapse, she is still fighting as hard as ever to stop childhood cancer in it’s tracks.  She asked me to personally thank everyone who helped in her “Cards for a Cause” fundraiser, because thanks to everyone’s generous participation, she was able to raise over $3,000 for her childhood cancer fundraiser!!!  All of the money will go towards her fundraising effort through the Children’s Cancer Therapy Development Institute (CCTDI).  Megan is working to raise $180,000 to fund the pre-clinical trials for a very promising treatment for ARMS that is being researched at CCTDI.  The sad thing is that if funding were available for a full clinical trial, this drug is one that could have been an option for Megan’s current relapse.  Unfortunately, due to the woeful lack of funding from pharmaceutical companies and the Federal government, this is not a unique situation.  Megan has spoken with doctors from across the country who believe they have a promising treatment for childhood cancer, but by and large, these treatment just get lost in the lab due to a lack of funding and attention towards childhood cancer.  Thank you to those of you who have so generously helped Megan with her fundraising effort.  It’s going great, but she still has a long ways to go.  If you are interested in partnering with Megan to help end childhood cancer, you can donate to her fundraising effort at

https://cc-tdi.kindful.com/honor-pages-2017/megan-bugg

Hopefully this is the week that Megan gets some answers so she knows what she is dealing with in terms of treatment.  Thank you so much to everyone on “Team Megan” who has been reaching out to her with kind words of support and encouragement.  It means so much to Megan as she continues her battle with this evil beast.  Until next week…