Taking a Bite Out Of the Big Apple

One of the important lessons you learn when fighting cancer is to never put off until tomorrow what you can do today.  In other words, you have to live in the moment, because you never know what tomorrow may bring.  During Megan’s current chemotherapy protocol, she receives treatment for two weeks and then she gets a week off to recover.  Since this is the end of her fourth three week cycle, we have started to learn what each week will bring.  We know that after her week one treatment, she will feel okay for the first couple days following treatment, but then she will feel pretty exhausted with some stomach distress for the next three days.  She will then have two pretty good days before her week two treatment; after which she will feel pretty tired for a couple days before the real issues start.  For the next four days, she will be unable to do much of anything as she is so fatigued that even going up the stairs to go to bed leaves her gasping for air.  On top of that, her GI issues become debilitating along with constant headaches and bloody noses.  She also needs to receive a daily shot of Neupogen to increase her white blood cell counts, since after week two she is most susceptible to infection.  She receives no treatment in week three to allow her body and blood counts a chance to recover before starting all over again.  The beauty of week three is that by Thursday of that week, we know Megan will be feeling pretty good until she receives her week one treatment the next Tuesday.  Since we now know how she will respond, we also know that if we are going to schedule anything, that five day window is really the only chance…and we try not to let it go to waste.

Megan and Kenzi are both huge fans of Broadway musicals.  Both of them took advantage of our incredible music/drama program at Coal City High School by performing in the musical productions.  Kenzi participated all four years of high school, but obviously, due to Megan’s treatment, she was limited.  However, she was able to participate as an 8th grader and she also was in the high school show her sophomore and junior years.  Since then, they both love to see musical performances whether they are at CCHS, Chicago, or best of all…on Broadway in New York City.  Since we knew Megan should be able to travel this weekend, Deb planned a girls trip to NYC to see three different musical productions.  Since Kenzi hasn’t started classes at UW yet, she was able to come home, which made the girls weekend complete.

Prior to them leaving early Friday morning, Megan had to go to CDH to make sure her blood counts were okay to travel.  Kenzi accompanied us to the appointment, which made Megan happy.  As always, Megan lit up the clinic with her laughter and positive attitude.  Prior to getting there, she asked me to stop at the Morris Bakery so she could bring donuts to her nurses and doctors.  It seems like every time she goes to the clinic, she has a gift for someone 🙂  We were all relieved to learn that her blood counts were good and Dr. Hayani gave her the all clear to travel.

The girls got to the airport on Friday morning and I am heading to the airport late tonight to pick them up.  While they were there, Aunt Janet and Cousin Carly met them on Saturday for supper and two of the shows, which was a nice surprise.  Here is their girls weekend in pictures.

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All smiles on the airplane ready to leave O’Hare.
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While in NYC, Megan hooked up with her friends at Ivory Ella. Megan has a big announcement coming just in time for Childhood Cancer Awareness Month…but I will save that for next week’s post 🙂
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On Friday night, the girls headed to see “Frozen”, which they said was amazing.
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Prior to Heading to NYC, the girls collaborated on all of the food places they wanted to visit. “Juniors” was one of them.
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On Saturday morning, the girls went to a Cat Cafe for coffee…and kitties 🙂
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For lunch, the girls hit some spaghetti place where they serve your food in a cone. They said it was lots of fun.
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Aunt Janet and Cousin Carly met the girls for supper prior to heading to “Waitress”.
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“Waitress” was the show the girls were looking forward to the most. Not only do they love the music from the show, but Colleen Ballinger (of Miranda Sings fame) was also starring in the musical.

After Waitress on Saturday night, the girls really wanted to try to meet Colleen Ballinger, so they hustled outside to where the performers exit the theater.  Colleen has been a huge supporter of cancer survivors and cancer research as she does multiple fundraisers each year to support the cause.  Megan always watches her online fundraisers and donates money each time.  Getting the chance to see Colleen perform and the possibility of seeing her after the show was something the girls were really looking forward to.  Believe it or not, after the show the girls actually connected with her!!!  Deb sent me a video of Megan meeting her, and I could hear Kenzi in the background say, “Why am I crying, she’s talking to my sister.” 🙂  I think it was a really emotional moment to see Colleen show her support for Megan and take pictures with the girls.  Another lesson we have learned during this journey is that there are so many kind people in this world.

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On Sunday, the girls were seeing a matinee of “Dear Evan Hansen” and then it was time to head to the airport.

Prior to Megan’s illness, these are the kinds of quick weekend trips where we would have decided to wait until summer, or over the winter break, but not anymore.  Experiencing childhood cancer has taught us to seize the day, because you just never know what tomorrow might bring.

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On Monday, Kenzi heads back to Madison, WI to start her junior year of college.  We will miss her, but we know she is where she belongs right now, and we could not be prouder of her accomplishments.  On Tuesday, Megan goes to CDH for her first treatment of Round #5.  Following this three week round, Megan will receive another full set of scans, which will obviously cause her tremendous anxiety.  However, until then, Megan will find a way to power through the next two weeks of treatment.  I know she will also continue to make the most of every single day she feels good.  Over the past nearly five years, she has developed a gift for living in the moment.  She has learned that life is a lot better when you stop sweating the small stuff; when you are kind to others; and when you give more than you receive.  Wouldn’t we all be a lot happier if we followed her lead?

Until next week…

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You Have to Know WHY

As the superintendent of Coal City School District #1, I always give an opening day address to all of our faculty and staff.  Each year, I center my presentation around a theme that I hope to reinforce throughout the school year.  This year, my theme for the 2019-2020 school year was “Remember WHY”.  What I tried to convey to everyone was that every person who has a job knows WHAT they do, but the truly passionate and successful people focus not on WHAT they do, but rather on WHY they do it.  When times get tough or we face seemingly insurmountable challenges, it’s our WHY they allows to keep driving towards our goals and eventually persevere.  With my faculty and staff, I focused on our WHY being our students, and tried to reinforce that when the job gets tough and we get discouraged, we have to recenter around our WHY.  The truly great teachers don’t teach 2nd grade, or special education, or science or English or math.  The truly great teachers know that they teach KIDS.  Their entire job is centered around not their WHAT, but their WHY.  After finishing my opening day presentation on Wednesday morning and getting some time this weekend to reflect, I began to realize that knowing her WHY might just be the driving force in Megan’s passionate determination and fight to beat childhood cancer.

After Megan’s initial diagnosis on December 30, 2014 and her subsequent 54 week chemotherapy/radiation protocol, she was fighting with everything she had just to survive.  She was only 13 years old at the time and her body was being ravaged by the toxic treatments necessary to fight off stage 4 Alveolar Rhabdomyosarcoma.  After she crossed the finish line and was in remission for nearly a year, she spent that time trying to recapture her life by being reintroduced to school, friends, and a social life.  When she relapsed in February, 2016, that’s when I started to see a change in her.  All of the sudden, she was spending hours researching childhood cancer on the Internet.  She started reaching out to other teenage childhood cancer fighters from all over the country and the world via social media.  She started to contact her local legislators and met with every single one of her State and Federal congressional representatives and Senators.  She started connecting with various business and agencies encouraging them to conduct fundraising efforts to raise awareness and funds for childhood cancer.  She started her own fundraising campaign to raise money for childhood cancer research that started with a modest goal of raising $10,000 and to date she has now raised over $180,000 to directly fund promising childhood cancer research.  She began trying to take care of the other kids at her hospital who were in the fight with her by bringing them gifts and a smile when they came in for treatment.  She partnered with the school district on a Christmas toy drive to provide presents for the kids when they came to the hospital for treatment over the Christmas holiday.  She was the keynote speaker at the annual Cal’s Angels fundraising gala that brought in over one millions dollars to support families with children fighting cancer.  She used her Grundy County Women of Distinction recognition as a platform to bring recognition and awareness for childhood cancer and the lack of funding for new treatments and cures.  She even traveled to Washington, D.C. as a speaker for Curefest where she shared her message with the Capital building as the backdrop.  After her relapse, her WHY became much bigger than herself.  Her WHY was now to fight for every single kid across the country who has battled, is battling, or will battle childhood cancer.

The treatments for childhood cancer are so brutal that there are some teenage childhood cancer patients who, upon relapse, decide enough is enough and choose not to go through the treatment again.  As I have watched Megan and others suffer through these toxic chemotherapy treatments, I understand and respect their decision, because these treatments are nothing short of tortuous.  Sometimes I have wondered how Megan has endured over 100 weeks of chemotherapy and maintained her will and drive to win.  I think I understand now that her WHY has become so important to her that she will never allow herself to give up.  She knows that she is no longer just fighting for herself.  When she talks to young cancer patients and their families at her hospital, she wants to provide them with motivation and hope.  She wants them to know to stay positive because it can be done.  She wants her cancer fighting teenage friends from across the country and the world to keep fighting and know that they can win.  She wants the adults who decide how money to fight cancer is allocated to know that she’s not going anywhere anytime soon, so they will have to answer to her.  In short, her WHY is not about herself. Instead, her WHY is about something much bigger.  That’s what continues to drive her to keep fighting and overcome weeks like she just experienced.

On Tuesday, Megan received her week #2 treatment of her fourth three week chemotherapy cycle.  In her previous three cycles, this particular treatment has been really tough on her.  Her medical team continues to tweak her numerous medication meant to calm the awful side effects, and although they have made a little progress, it’s still very tough on her.  The day she receives her treatment, she usually does pretty well.  In fact, the day after usually isn’t that bad either, but its the next three or four days that are so difficult for her.  Through all of her experience with nausea, Megan has learned what she has to do to avoid throwing up, so that seldom happens anymore.  However, for those three or four days, the symptoms she has are very similar to what you may have experienced with the flu.  She is extremely fatigued and short of breath.  Also, her entire body aches to the point that she can’t find a comfortable position to lay down.  She fights constant stomach and GI pain as well as other ailments too numerous to mention.  This week, the symptoms hit her hard on Thursday night and have continued into today, but if the past predicts the future, then tomorrow she should thankfully start to turn the corner.

This week was also emotionally tough on Megan because on Tuesday, her good friend Ava left for college in Florida.  Then on Wednesday, her good friend Katelyn left for Eastern Illinois University.  Obviously, college is on hold for Megan has she continues her chemotherapy treatments, so that made it extra tough to say goodbye to her friends.  Here is a picture of Megan and Katelyn on the night before she left for school.

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To make the week even tougher, Kenzi had to head back to Madison, Wisconsin on Thursday morning to move into her new apartment.  Kenzi had been home for a week prior and she and Megan had a lot of fun together.  Megan loves it when Kenzi comes home because she says that her “play partner” is back.  They spent a day shopping, made trips to Starbucks, and made some awesome cherry-almond-vanilla cupcakes 🙂

It’s always tough when Kenzi goes back to school, but luckily, they are only a text or a Facetime talk away.  However, seeing two of her good friends and Kenzi leave made Megan’s week that much tougher.

Saturday was probably Megan’s roughest day, but that was also the day Deb and I needed to drive up to Kenzi’s with all of her big furniture and things.  We had it all set for Megan to stay home with someone so she could just rest, but she was determined to make the trip with us to see her sister.  Although she was exhausted, she was able to lay in Kenzi’s bed while Deb and I helped her get moved in to her new apartment.  Unfortunately, we were so busy getting her moved in that I forgot to take any pictures 😦  Kenzi is very excited because she is living with her good friends and for the first time she has her own bedroom!!!  Although the visits are always too short, it was so great to see her.  It’s so hard to believe that she is already a junior in college!  We are so proud of everything she has accomplished and can’t wait to see what the future holds for her. #gobadgers

Today, Megan started to feel a little better, so we all went to Kankakee to meet our good friends Jerry and Kay Cougill for a late lunch at Monicals.  Megan always enjoys seeing them, because now that they have moved to Indiana, we don’t get together as often as we used to.  Megan was pretty worn out afterwards and slept the rest of the afternoon.

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Thankfully, next week is Megan’s week off from chemotherapy so her body will get a chance to recover before she starts all over again the following Tuesday.  On Thursday, she will go to CDH to get her blood counts checked, but hopefully that will be a quick trip with no issues.

As Megan continues her battle with cancer, her WHY will continue to be all of the brave kids who have fought, are fighting, or will fight this dreadful and ridiculous disease.  It’s her WHY that continues to motivate her to fight back with everything she’s got.Screenshot 2019-08-18 18.19.03

Until next week…

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Combating Chemo

Megan is in the midst of her 102nd week of chemotherapy, which means she has spent nearly two of her 18 young years combating the effects of these poisonous drugs.  Due to an embarrassing and completely unacceptable lack of advancements in the treatment of pediatric cancers, our kids are still being treated with drugs that are more than 30 years old.  As modern medicine continues to make incredible advances in the treatment of other types of adult cancers, our kids continue to get left behind because pediatric cancer is not profitable to the big pharmaceutical companies and is considered rare by our Federal government.  As a result, kids like Megan suffer through treatments that are nothing short of tortuous.  Many of Megan’s childhood cancer friends who have relapsed have chosen to forego treatment just to avoid the dreadful side effects that accompany chemotherapy…and when you see it first hand, it’s hard to find fault in their decision.  Fortunately, in the face of such side effects, Megan’s resolve to win somehow gets stronger and stronger.  I truly believe that the reason Megan has been able to persevere is due to her ability to successfully combat the physical and mental side effects of chemotherapy.

When I say that Megan knows how to combat the effects of chemotherapy, it has very little to do with all of the little tricks she has used to deal with nausea, bone pain, fatigue, GI issues, headaches, hormonal issues, neuropathy, nose bleeds, compromised immune system, mouth sores, memory loss, and all of the other flu-like symptoms.  Granted, the side effects are many and they are brutal, but as I have written previously, the physical battle pales in comparison to the mental one.  What Megan has mastered is the art of battling through the physically rough days and living the good days to the absolute fullest.

Megan has her next chemotherapy treatment on Tuesday, and she knows that she will be down and out at least until Friday if not through the weekend.  The days are long and the nights can be longer as she desperately tries to outlast the effects of chemotherapy.  When I go in her room first thing in the morning, I immediately know if she has turned the corner because when she does, that smile is extra infectious.

This past week, she had chemotherapy on Tuesday and it was Friday morning when I finally saw that smile.  The timing could not have been more perfect as Kenzi was coming home Friday night for a week before she moves into her new apartment in Madison on August 15.  Throughout the weekend, Megan planned things with her sister, friends and extended family as she set about making the most of her good days.  It is weekends like these that give her the fuel to know she will once again make it through next Tuesday’s chemotherapy treatment.  She never sits around feeling sorry for herself, because she knows the good days are rare and can’t be wasted.  It’s that positive attitude and gratitude for life that keep her going and won’t allow her to ever quit.  That’s the key to combating chemo.

After her chemo treatment this past Tuesday, Megan really struggled for a few days with fatigue, stomach issues, and the general body pain that comes with these terrible drugs.  However, on Thursday night Megan felt well enough to have her good friend Katelyn come over where they did a little painting outside.  Katelyn has been such a good friend to Megan, but she heads to school this week to Eastern Illinois University.  Although we are very excited for her, Megan will definitely miss having her around.  Good luck Katelyn!!!

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While Kenzi was working in Madison this summer, she also took a summer class and her final exam was on Friday.  As soon as her final was over she headed for home and arrived at about 6:30 p.m., which was just in time for us to enjoy a family meal together.  Megan was excited that Kenzi was going to be home for a week so she had her “play partner” around.

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On Kenzi’s drive home from school, she called Grandpa Bugg to see if we could get together while she was home for the week.  Luckily, she is quite the organizer as she quickly scheduled supper in Bloomington on Saturday night with Grandpa and Grandma Bugg, Uncle Todd and Gina, and Cousin Danny.  It was so great to see everyone, and luckily Kenzi was able to pull the dinner off while Megan was feeling good.

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On Sunday, Megan went on a Starbucks run with her friend Ava, who is also heading to college this week.  She also went shopping with her mom and met Ava again in the evening for a quick WalMart trip.  In between, she even managed to stop over and help me cook some hotdogs at our school district’s “Back to School Bash” this afternoon.

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To make the day complete, Megan and Kenzi stopped over to give their buddy Fitz a special gift.  Megan works with Jaime at the Broadway Dance Studio and Fitz is Jaime’s son.  Kenzi and Megan decided that Fitz needed to become a Badger, so they got him this cute shirt and ball cap.  Both girls think Fitz is adorable and looks pretty awesome as a future Wisconsin Badger. Since Fitz was feeling a little under the weather, Megan couldn’t hold him for fear of infection, but I’m sure she will make up for that soon.  However, Kenzi had no problem having the honors 🙂

Since Kenzi is home, I’m sure Monday will be filled with activities prior to Megan heading back to CDH on Tuesday for another round of chemo infusions.  This will be week two of her fourth chemotherapy cycle, and this is the one that usually hits her pretty hard.  Hopefully, Megan can power through the 3-5 days following treatment and get back to making the most of the days when she feels good.

Over the past five years, I have learned that beating cancer has so much to do with mindset and attitude.  First, you have to believe your going to win.  Somehow, even after all she has been through, Megan’s belief in herself has never wavered…in fact, it has only grown stronger.  Second, you have to learn to dance in the rain. Even on the darkest days, she never fails to find a reason to smile.  Third, you have to be thankful for your life.  I will never forget when Megan told me that she was thankful for her life and wouldn’t change a thing.  She said that she believes everything happens for a reason, and she got this disease because she was supposed to make a difference, and that’s what she was going to do.

Sure…to get through chemotherapy, you have to use whatever medications and home remedies work for you because the side effects are ugly.  However, there is difference between managing chemo and combating chemo.  To truly combat chemo, you have to fill your days with life, love and laughter.  We would all be better off if we could view life through Megan’s lens.

Let’s hope this week isn’t too rough and Megan continues to successfully combat chemo.  Until next week…

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“Scars, Bald Heads & Radiation Burns are Beautiful”

Megan was a shy, reserved 13 year old 8th grader when she was first diagnosed with aggressive stage 4 Alveolar Rhabdomyosarcoma (ARMS).  Sadly, there are numerous types of childhood cancer, and all of them are awful, but ARMS is considered one of the most aggressive and hardest to treat.  From the very first day of her battle, Megan has shown a determination and resolve that surprised everyone around her.  Over the past nearly five years, cancer has unleashed a passion and fight that has made Megan a force to be reckoned with.  In her own personal battle, she has gone through some incredibly tough mental and physical fights, but through it all she has never lost her will and belief that she will ultimately come out of this victorious.  She has also expanded her fight to take on an entire government and pharmaceutical industry that has let down not only her, but the thousands of other vulnerable kids across the country who are experiencing the nightmare that is childhood cancer.  In her words,

“I don’t ever want to be that person who just sits there and feels sorry for themselves.  I want to make a difference and make the world better.”

In her mission to “make the world better”, her number one priority has been raising awareness for the desperate need for more funding to support childhood cancer research.  September is “Childhood Cancer Awareness Month” and Megan has already been making plans on how she will raise awareness for the cause.  As an 18 year old still fighting the beast with everything she’s got, Megan has definitely changed from that shy and unsure 13 year old to an 18 year old on a determined mission to defeat childhood cancer once and for all.  It seem like an insurmountable task, but one thing I have learned over the past five years is to never underestimate her resolve.  I truly believe Megan’s generation will be the one that finally eradicates childhood cancer for good…and what a glorious day that will be.

In preparation for “Childhood Cancer Awareness Month” in September, Megan contacted to Mikayla at Capture the Canvas Photography.  When Kenzi was in high school, she reached out to Mikayla to take her senior pictures, and the results were incredible!  When it came time for Megan’s senior pictures, Mikayla knocked it out of the park once again.  For September, Megan said she wanted pictures of herself that she could use during “Childhood Cancer Awareness Month” that showed her being strong and powerful.  She wanted to send the message to kids all over the country that cancer could not control them, and she knew Mikayla was the person who could pull it off.  Strong and powerful were the only guidelines Megan provided, and then she let Mikayla’s creativity take over.  I know I am more than a bit biased, but I believe the results were absolutely stunning.  Even more so, I was moved by the post that Megan wrote to accompany the posting of her pictures.  Here are three of her pictures along with her post espousing her reasoning for getting these pictures taken.

“I was diagnosed with an aggressive childhood cancer when I was 13. I was always really embarrassed of having no hair and I always hid my head with a hat. Now that I am 18 and still fighting I have lost my hair once again. I wanted to do these pictures to show I am not this little shy embarrassed 13 year old girl anymore. I’m proud of my beauty with hair or without. I wanted these pictures to be powerful and beautiful to show how strong women can be and that we can face anything. Scars, bald heads, and radiation burns are beautiful.”
~Megan

Megan received her second chemotherapy treatment of Round #3 on Friday, July 26.  She hung in there pretty well on Friday and Saturday, but Sunday night she started to slow down.  Then Monday and Tuesday were really pretty rough as she suffered from nausea, bone pain, constant stomach pain, headaches and severe fatigue.  It was Wednesday evening before she started to finally turn the corner.  Fortunately, every third week she receives a break from her treatment to give her blood counts and body time to recover prior to getting hit with chemotherapy again with the start of Round #4.  Sadly, that’s the game with chemotherapy…kids get as high a dose of these toxic meds as their bodies can handle, and then they get a short recovery period before it starts all over again.  As Megan likes to remind people, when her nurses prepare her infusions, they are in protective gowns, face masks and gloves because if the chemo drug happens to spill, it is toxic…yet injecting these poisons in our kids is the best the medical community can provide at this point.  As I’ve said many times before, Megan is receiving essentially the same treatments I would have received at her age…and I’m 52 years old.  Such a lack of progress is so unacceptable.  When Megan struggles to recover, it is really hard to watch, but it is such a relief when that infectious smile finally returns to her face.  Since she knew she would be feeling good over the weekend, she had some big plans.

Although Megan wasn’t feeling good, we still managed to celebrate Deb’s birthday on July 30.  Since Megan couldn’t go out for dinner, Makenna Emerson came over and we all ordered birthday pizza in.  We also had a Portillo’s chocolate cake and some mini-bundt cakes from “Nothing Bundt Cakes” in Shorewood.  We also Facetimed Kenzi into the festivities from Madison, WI so she could watch Deb open her presents and sing Happy Birthday to her mom as she blew out the candles on her cake.  Notice Kenzi on the phone Megan is holding 🙂

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On Saturday, Megan attended the annual Central DuPage Hospital oncology unit summer picnic.  She always looks forward to this event as she gets to see all of her amazing health care professionals, and many of the kids who are fighting the battle.  Megan has grown close to so many of the kids at the CDH clinic.  Whenever she gets her chemo infusions, she always takes her IV pole with her and walks around to the different rooms to see which kids are there.  A couple weeks ago, she brought gummi bears to a little boy, because the week before he told her how much he likes them.  She brought a pair of colorful leggings to another little girl to raise her spirits, and has even sent gifts via the mail whenever someone isn’t there.  She offers them words of encouragement, and I think that when the parents of these kids see Megan still fighting with such a positive attitude, it gives them hope as well.  Needless to say, she had a great time at the picnic…even though the heat got to her a little bit.  Ever since she has been receiving chemotherapy treatments, her body doesn’t respond well to the heat, so the really hot days are tough for her.  But as you can see by the pictures, she still had a blast 🙂

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Megan was so happy that Nurse Bridget came back from Indianapolis to come to the picnic. Megan always loved her and was so disappointed she moved away. I know seeing her again made Megan’s day.
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I’ve said it so many times before, but Nurse Kathy is one in a million. She has become Megan’s second mom, as well as a member of our family. She is the best and Megan adores her.
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Dr. Salvi retired at the end of last year, and we were all devastated. He is a brilliant doctor who did so much for Megan, and we really miss him. When Megan heard he was going to be at the picnic, she was thrilled.
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Dr. Hayani has been treating Megan since day one, and he is still right there by her side. He is another amazing doctor who always greets Megan with a big smile and a high five.
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This is Dr. Kar. He took over when Dr. Salvi retired. He is another brilliant doctor and we are so fortunate to have someone of his caliber on Megan’s medical team.
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Megan is always happy to see Aileen, who is the Child-Life Specialist at the Proton Radiation Center.  She has seen Megan through over 130 radiation treatments.

On Saturday, I was unable to attend the picnic because I needed to drive to Madison to help Kenzi move out of her current apartment.  She and her roommates are moving from one apartment into another on campus, but there is a seven day window where she is homeless.  Fortunately, her best friend Ellyn’s family lives in Madison, so Kenzi is going to stay with them until Friday, August 9 when she is coming home for a week prior to moving into her new apartment.  As a result, we had to load all of her stuff up and bring it home because she had nowhere to store everything.  Although I missed attending the CDH picnic, it was really good to see Kenzi.  In her current apartment, Kenzi has pictures surrounding the walls around her bed.  As we took the pictures boards down, I came across this pictures, which I believe is my all time favorite of the girls when they were little 🙂

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On Sunday, Megan was really excited because she was going to the musical “Cats” in Chicago with her friends she works with at Broadway Dance Studio.  Kim, Emma and Jaime have been so good to her, and Megan loves hanging out with them.  I got a kick out of the outfit she wore to the musical 🙂

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And here are the four of them waiting for the show to start.

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This week started a little rough, but by Thursday, Megan turned the corner as she got her pictures taken and was able to do all of the things she had planned for the weekend.  On Tuesday, Megan heads back to CDH to start powering through Round 4 of her treatment.  She will receive two chemotherapy infusions on Tuesday, and then starts the recovery process to get ready for her next two infusions a week later.  When you are fighting this battle, you learn to make the most of those days when you are feeling good, and Megan has definitely mastered that skill.

Megan is strong and she is beautiful, and cancer will never take that away from her.

“Scars, bald heads, and radiation burns are beautiful.”

Megan Bugg

Until next week…

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Don’t Complain…Make a Difference

As Megan continues her nearly five year battle with stage 4 Alveolar Rhabdomyosarcoma, I continue to be in awe of her strength and perseverance.  To date, she has undergone 98 weeks of intense chemotherapy and well over 100 radiation treatments to combat her initial diagnosis and four relapses.  Add to that the innumerable nasty and barbaric side effects that accompany these archaic chemotherapy treatments, and I’m pretty sure I would have thrown in the towel long ago.  However, Megan is just the opposite.  With each passing relapse and each accompanying physical and mental challenge, she just gets stronger and more determined.  Never was this more apparent than when I was bringing her home from Friday’s chemotherapy treatment.  She started to talk about some ideas she had to raise awareness and further advocate for childhood cancer funding.  I mentioned that maybe she should just be patient and wait until she is better before doing more advocacy work.  That’s when she looked at me and said,

“I can do both.  I don’t ever want to be that person who just sits there and feels sorry for themselves.  I want to make a difference and make the world better.”

Talk about a humbling moment!  During Megan’s Journey, there have been many times where I have become so self-absorbed with the enormity of the task in front of us that I have tuned out most everything else.  However, Megan is the one actually in the ring fighting the physical and mental battle, and she is still laser focused on not only winning her own personal fight, but on trying to win the fight for every single kid who is fighting this disease.  At that moment, I fully realized that childhood cancer created a powerful force when it decided to choose Megan, and that force is not weakening from the prolonged perils of battle.  Instead, Megan is somehow gaining strength, motivation, and determination with each physical and mental challenge placed before her.  Quitting is not in her DNA, so it would be nice if cancer would be the one to finally wave the white flag and surrender.

Last week, Megan’s doctors agreed to move her chemotherapy treatments from Tuesday to Friday to accommodate some big weekend plans she had.  This past Friday was her second week’s treatment of the third round, and in the previous two rounds, this particular chemo cocktail proved quite challenging.  Megan was hoping that by moving the treatment to Friday, she would still feel well enough for the weekend.  Kenzi was planning to come home for the weekend on Thursday night, and Megan also really wanted to watch the Small Town Theatrics performance of “Hairspray” which was showing this weekend.  Luckily, her scheme worked as she was able to do most everything she had planned.

On Thursday night, Megan and her friend Emma both attended the Thursday night performance of “Hairspray” at Coal City High School.  It was an amazing production, and Megan loved it.  Here she is after the show with a few of her friends who performed in the musical.

Kenzi got home late Thursday night, and Megan really enjoys it when she is home.  Megan calls Kenzi her “play partner” and they definitely had some big plans for the weekend.  Before they could get started on their weekend, Megan had to go to CDH on Friday for her chemotherapy treatments.  Prior to heading to the hospital, Megan went over to the Broadway Dance Studio where she works to watch tryouts.  She was pretty happy when her buddy Fitz was there to play with her 🙂

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Late Friday morning, Deb took Megan to treatment and since Kenzi was home, I brought her and her boyfriend Nick up to keep Megan company during her three hours of chemotherapy infusions.  Of course, we had to stop to get Megan some tacos and Starbucks that she requested 🙂

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After her treatment, Megan was still feeling pretty good, so she, Kenzi and Makenna went to see “Hairspray” again.  After that, Megan went right to bed because she and Kenzi had big plans for Saturday.

We were all surprised when Megan woke up at 7:30 a.m. on Saturday morning and immediately hopped into bed with Kenzi.  Usually after her chemo treatments she sleeps much later, but I think there was just too much excitement in the house.  We picked up Makenna and all went to breakfast at the Whistle Stop, where the girls decided to try their luck at the crane.  Of course, each of them won a prize! There were definitely lots of laughs.

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After breakfast, we all went to the Pop Up In the Park event in Coal City, which was were local businesses set up outside in tents.  The public library had a mini-golf course set up, which of course we all had to play.

Kenzi and Megan also found a few bargains they couldn’t pass up.

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After that, the girls and I headed up to Naperville because the girls wanted to shop for Deb’s upcoming birthday and they also had some other plans for the area.  I was amazed at Megan’s stamina when we walked around downtown Naperville.  We had to walk slowly, but with a few breaks, she powered through the entire afternoon, which included lunch, shopping, painting pottery, and Starbucks Select.  Of course, Megan picked a cat to paint for her pottery selection 🙂  We had a blast together…and we are all pretty sure their mom is really going to like her birthday presents.

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On Sunday, Uncle Todd, Gina and Danny all came up for a cookout and to swim.  It was an awesome day…but of course…I forgot to take pictures 😦  Megan tried her best to hang in there, but the effects of Friday’s chemotherapy treatments started to get the best of her and she ended up falling asleep for about three and half hours during the afternoon.  She woke up in time to have some supper with her sister before Kenzi had to make the three hour drive back to Madison, WI.  Of course, while Kenzi was home she had to get in on the pictures with Willow 🙂

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Considering how tough the previous week #2 treatments were for Megan, she has responded much better so far.  Hopefully tomorrow is more of the same.  Later this week Megan goes back to CDH for blood work and then the following week she will start her fourth round of this chemotherapy protocol.  Following her fourth treatment cycle, she will receive another full set of scans to determine if the treatment is still working. So far, we have no reason to believe it isn’t as her previous scans showed that her tumors had shrunk considerably.  We will continue to follow Megan’s lead and think positive.

I’ve heard it said that life is 10% what happens to you and 90% how you react to it.  If that is indeed true, then cancer has definitely met its match.  Until next week…

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Exhausted But Still Fighting

After getting good news regarding last week’s scans, the celebration was short-lived as Megan was scheduled to be right back at it this week with her first chemotherapy treatment of Round 3.  As I’ve said before, while traversing this difficult journey, you have to become adept at managing the highs and the lows.  Until the beast is gone for good, you can’t get too carried away with the good news, while at the same time, you can never let the bad news strip you of your optimism.  Therefore, when last week’s good news came, we were obviously overjoyed to learn that the combination of this experimental chemotherapy treatment and proton radiation seemed to be working as Megan’s tumors had shrunk considerable.  However, we also knew the physical and mental battle was far from over for her with the start of a new chemotherapy cycle on the horizon.  As usual, chemotherapy met our expectations as it has once again been very tough on Megan, but prior to that, she cleared another important hurdle as she continues to fight this battle with an indomitable determination and spirit.

Since the third week of Megan’s chemotherapy cycle is always a recovery week, she felt relatively good to start the week.  She is still battling some chronic stomach issues that presents itself in a variety of ways including nausea, stomach pain, irregularity and occasional heartburn.  Megan has seen a specialist to try and diagnose and treat her issues, but it was to no avail.  Megan has always had a touchy stomach (which I think she inherited from her dad), but since her first chemotherapy treatments four and a half years ago, it has definitely gotten much worse.  We are scheduled to see another specialist soon, so hopefully they can get her some relief.  Most likely, this is just another of the numerous side effects caused by the outdated toxic treatments used on childhood cancer patients.  As I’ve said many times, we have to start doing better by our kids and make curing childhood cancer a national focus.  When you have seen the horrors what we have witnessed, you quickly realize that in a country as wealthy and advanced as ours, it is tragic what we are allowing childhood cancer to do to our kids.  I still hold out faith that someone or something will serve as a catalyst and cause our country to have a wake-up call so we start making the treatment of childhood cancer a priority.  I know Megan will not rest until that happens, because she is determined that no more kids experience what she has gone through in her fight with this vicious and ridiculous disease.

As readers of this blog know, there is nothing that brings Megan more joy than her pets.  Throughout her journey, they have been a constant source of comfort to her in the most trying of times.  Although she loves all three of her cats and her dog, Willow is the kitty who she has the closest connection with.  Kenzi gave Willow to Megan two Christmases ago, and Megan still claims she is the best gift ever.  Whenever Megan is feeling mentally or physically down, Willow (a.k.a. BooBoo Kitty) seems to always know just when to jump up in Megan’s arms.

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Since she had an Amazon gift card to use, Megan had seen a cat stroller and decided that she and BooBoo definitely needed one.  On Monday, she was pretty excited that her new stroller came in.  Here she is taking BooBoo for a quick walk in her new pink stroller.  Although the kitty was a little nervous at first, after a few steps, she seemed to be taking it all in.  It was so cute!

On Tuesday, Megan was scheduled not only for her second proton radiation treatment of the week, but she was also supposed to receive her first chemotherapy treatment of Round #3.  Although Megan’s blood counts came back good, she, Deb and Dr. Kar had a long discussion regarding the scheduling of her treatments.  Megan wanted to meet her sister, Kenzi, in Rosemont this weekend, but she knew that if she had treatment on Tuesday, she wouldn’t feel up to going on Sunday to see her sister.  Also, our communities’ local theater group, Small Town Theatrics, is putting on the musical “Hairspray” this coming weekend, which is one of Megan’s favorite musicals.  She told the doctor that if she received her second round treatment on this coming Tuesday, there was no way she would feel well enough to see the musical.  After some discussion, they all decided to rearrange her schedule to allow her to try and do the things she was hoping to do for the next two weekends.  As a result, they moved her chemotherapy treatment to last Friday and then the following Friday, which gave Megan even a couple more days to allow her body to recover from Round #2.  Megan was excited to know that with this current chemotherapy protocol, there was some flexibility that could be worked in to allow her to schedule some activities.

Megan had proton radiation on both Wednesday and Thursday, which made Friday her last proton treatment!  However, before we could celebrate that, she had to go to the CDH clinic to get her first chemotherapy treatment of Round #3.  We got to CDH at about 9:30 a.m. and since they already completed her blood counts on Tuesday, they were able to get her infusions started right away.  She starts by getting a steroid infusion, which is meant to block some of the side effects of one of the chemotherapy drugs.  Then she received two one hour infusions, which went off without a hitch.  During her treatments, Megan completed her usual rounds walking around the clinic with her IV pole in tote as she talked to all of the incredible health professionals and some of the patients.  She even brought a special gift for a little boy who was there.  Megan knew that he loved gummy bears, so on the way to treatment, she asked me to stop at the store so she could buy him some.  She thought it might make his day, and when Megan gave the gummy bears to the little boy, his face lit up.  As usual, Megan is always more worried about all of the other kids in the clinic more so than herself.  She knows the struggles they are going through and wants to do what she can to make their battle a little easier.  Here she is getting Friday’s chemotherapy infusions.

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After her chemotherapy treatments were completed, we drove to the cancer center to get her final proton treatment.  The Child Life Specialist at the proton center is Aileen, and she has been a fixture for Megan during all five of her bouts with proton radiation.  Aileen is a very special person who always makes Megan feel more at ease during her treatments.  In fact, five weeks ago, I remember Megan being very nervous for her first treatment because it was scheduled at 9:00 p.m. and she knew that Aileen worked days.  Since Megan was wearing a partial mask and had just started chemotherapy, she was very nervous about making it through her first treatment.  However, her anxiety slipped away when we walked in the door and there was Aileen.  She had made a special trip back to the proton center that night to be with Megan as she started her treatments.  I will never forget the difference her caring and kindness made for Megan that night.  Aileen is just another example of the caring health care professionals that have become so important to Megan.  Of course, as Megan completed her final treatment on Friday, Aileen hustled back from another commitment to be there as Megan triumphantly completed her treatment and placed a fifth hand print on the wall.  I asked Megan if she wanted to put her hand print up there again, and she answered with an emphatic “Yes”, because she said it shows other kids that they should never stop fighting.  She thought that if Aileen showed other kids her hand prints, they would know that they too can do it.  Here are a series of pictures showing Megan placing her fifth hand print on the wall complete with green sprinkles.  By the way, she chose black in honor of her treasured black kitten, BooBoo 🙂

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And here is Megan posing with Aileen as she holds her completed treatment calendar.

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And here are Megan’s previous four hand prints that are located in that room.

Although Megan felt pretty good on Friday evening, Saturday and Sunday have been tough on her.  She hasn’t been that nauseous, but her body is exhausted.  On Saturday, Megan slept until 8:30 a.m. because she wanted to go to the local Farmer’s Market at 9:00 a.m.  We went, but it was just too hot for her, so we came back home after a short time.  At 9:30 a.m. she went back to sleep and didn’t wake up until 3:30 p.m.  Then she ate a little something and went back to sleep until supper at 6:30 p.m.  Makenna Emerson stopped over, which always lifts Megan’s spirits, but at 8:30 p.m., she had had it and was ready for bed.  She was really hoping she felt better today, because we had planned to meet Kenzi and her friend Ellyn in Rosemont for lunch and some shopping.  Although Megan woke up exhausted and dizzy, she was determined to go meet her sister.  We met at Giordano’s for lunch and then headed to the fashion outlets to shop.  During lunch, Megan had to go to the car once because she felt dizzy and nauseous, but she refused to go home.  She made it through lunch and then said she wanted to try to go to the shopping with Kenzi as long as she could.  Since Megan is so weak right now, the only way she can endure something that requires lots of walking is with a wheelchair.  After a couple of hours, even that was exhausting and she needed to come home.  However, we were all thrilled that we got to see Kenzi even for a short visit, and better yet, Kenzi is coming home on Thursday night for the weekend so she and Megan can go see “Hairspray” together.  Once again, hopefully the next chemo treatment allows her to attend.

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Hopefully, the next couple of days allows Megan to recover enough that she can enjoy not being forced to travel to proton radiation everyday.  Although it’s only a two hour round trip, when you make it every single day, it only adds to her exhaustion.  In the meantime, Megan will continue the fight…not only for herself, but for all of the brave kids who are fighting this awful disease.  Until next week…

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That Big Bad Roller Coaster

In previous posts, I have compared Megan’s Journey with cancer to riding the biggest, baddest roller coaster you have ever experienced.  Over the past nearly five years, there have definitely been times when we wondered not only how we would get through the day, but how we would even make it through the next hour.  Seeing your child suffer is the worst kind of pain for a parent, but I’m sure it pales in comparison to the actual physical and mental suffering Megan has experienced at the evil hands of childhood cancer.  On the flip side, Megan and our family have also encountered tremendous highs.  I can’t explain the feeling of euphoria that came over us in February, 2016 when we learned that Megan was officially in remission.  Throughout this journey, Megan and our family have experienced the very best that humanity has to offer.  The kindness, caring and generosity of everyone on Team Megan has been humbling to say the least.  Going through this battle with Megan has restored my faith in humanity and the inherent goodness that lies within people.  As you travel this arduous road, one of the lessons you learn is to not let yourself ever get to high or too low, because just like that big bad roller coaster, you just never know what is waiting over the next climb.  This week proved to be the perfect example of what I’m talking about.

This past week was a huge one for Megan as she had a CT scan on Monday and her MRI under anesthesia on Tuesday.  As usual, Megan handled her scans like a superstar.  She has been through this so many times that everyone at CDH seems to know her and they treat her so well.  She has an anesthesiologist that she really likes, and he always makes sure he is working when he sees Megan’s name on the schedule.  Although she got through the MRI with no problem, after the mental and physical stress of going through scans, Megan is always pretty exhausted on the ride home.

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Megan always struggles to recover from week two of her three week chemotherapy cycles, and this one was no exception.  Although she started feeling a little better last Sunday, early in the week she was still having some stomach issues and feeling exhausted.  At her CT scan on Monday, her blood counts showed that her platelets were low, but her hemoglobin and white blood cell counts were hanging in there.  Her oncologists asked to see her Thursday when they would check her blood again and we would go over the scan results.  In the meantime, Megan continued to try and use her week off to physically recover and get ready for the first treatment of week three, which will take place this Tuesday.

Waiting for scan results is the absolute worst.  When we met with one of her oncologists on Thursday, he shared good news with us.  Megan’s tumors are responding to these experimental chemotherapy treatments as the CT showed that the tumors in her chest have shrunk considerably and the major tumor in her neck is also much smaller.  The only tumor not responding is the one at the base of her skull, so they are deciding whether or not to go after that one with a procedure called gamma knife radiation.  Obviously, we were very pleased to learn that the chemotherapy and proton radiation are working.  The plan is now for her to go through two more cycles (6 weeks) and then go through a full set of scans again, including a PET scan.  At that point, we will determine the next course of action.  Unlike her first two chemotherapy protocols, which were clinically proven and had a set length of treatment, this current experimental treatment really doesn’t have a defined end date, so her doctors will be using her scan results in combination with how Megan’s body is holding up to determine the length of treatment.  It’s a little unsettling to know there is no definite ending date for the chemotherapy, but to know that it is working was definitely a relief.  Of course, Megan never doubted that her body would respond, because she just never loses faith in herself.  Her mental strength is amazing.

Megan’s proton radiation treatments are starting to take a toll on her skin as she is becoming more and more uncomfortable with each treatment.  Luckily, this will be her final week of treatment and her skin can start to recover, but here is a picture of what her skin looks like to date as a result of the proton beam.

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Also, because her platelet count was low, they had trouble with her port during the scans.  When they accessed and de-accessed her port, she was bleeding much more than normal, which caused the location of her port to become severely irritated.  When she went to the CDH clinic on Thursday, Nurse Jenny had to access her with an extra long needle, which Megan was not too happy about 🙂  Of course, Nurse Jenny pulled it off without a hitch.  She is the best!!!

Remember that big bad roller coaster I was telling you about?  After we got the good news from Megan’s oncologist on Thursday, I had to head back to Coal City for an appointment while Deb drove Megan to her proton radiation appointment.  For the past few days, Megan has really been having trouble with severe heartburn which tends to radiate throughout her chest and to her back.  Also, one of the side effects of chemotherapy is damage to the heart, so Megan has been seeing a cardiologist and is on medication for some weakening of her heart.  The cause of the heartburn is the proton radiation beam that is clipping her esophagus.  In order to get the entire tumor in her neck, there was no way for them to get to it without clipping a bit of her esophagus in the process.  The cumulative effect of all of the radiation treatments has caused some damage to the area, which is resulting in her heartburn problems.  Sometimes it gets to the point where she can’t even eat.  While she and Deb were meeting with the radiologist, Megan started getting pain her back and chest that got so severe that it had her in tears…and when she is in tears, you know she is hurting.  Over the past five years she has developed a pain tolerance that would put most adults to shame.  The radiologist said that although he believed it was all due to the heartburn issue, her symptoms of pain in her chest and back along with an elevated heart rate were all classic signs of a heart issue.  He recommended that if it got any worse, we would need to go to the emergency room.  After some consideration, Megan decided that just to be sure it would be best to get it checked out, so when I got home, I got a phone call from Deb that they were going to the emergency room.  Just like that big bad roller coaster, things quickly went from happiness to concern as I turned around and headed back to CDH.

While in the emergency room, Megan went through an EKG, heart x-ray and a CT scan.  After checking everything out, the doctors were convinced that her pain was caused by the proton radiation and it was just something she would have to deal with until her treatment was done.  Megan was extremely relieved to know that when she is getting that feeling, it is not a problem with her heart.  Although it was a very long day as we didn’t get home until about 11:00 p.m., I think it gave her some much needed piece of mind.  Here she is in the emergency room flashing that smile to let everyone know that she’s got this under control.

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Kenzi was excited because Makenna Emerson was coming to spend the weekend with her.  Being three hours away while Megan is going through all of this isn’t easy on a sibling, so having Kenna there was a welcome respite for Kenzi.  While she was there, they did all the classic UW Madison things.  Here are a few pictures of their adventures.

On Monday, Megan heads back to proton radiation and on Tuesday, she starts Round 3 of her chemotherapy treatments.  Although the last six weeks haven’t been easy, somehow she always manages to get off that roller coaster with that infectious smile intact.  Her positive outlook on life in the face of such challenges is something we could all learn from.  Until next week as the battle continues…

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