Drawing Strength from Her Peers

Last Sunday, our entire family was coming down off the high of watching Kenzi and Megan both perform in the high school musical production of “The Little Mermaid”.  It was an emotional weekend as it was the final show of Kenzi’s high school career, and it was Megan’s inaugural performance.  We were all very worried about whether Megan’s stamina would last through the entire weekend.  She was coming off a tough chemo treatment a few days prior, and we had no idea how her body would react.  However, as she has done so many times before, Megan was not about to let cancer have the pleasure of keeping her from this opportunity.  It was so much fun seeing her able to enjoy herself on stage with her peers.  Unfortunately, Sunday’s exuberance was followed with a cruel dose of reality as Megan had to be back at Central DuPage Hospital on Monday morning for her scheduled chemo treatment.

Megan was scheduled to receive two different chemo medications on Monday morning.  When she woke up, she went through her usual routine of getting ready by putting the numbing cream on the site of her port before she and Deb headed out the door.  Given that she is heading to the hospital to receive chemotherapy treatments, I am always amazed at how positive Megan is in the morning.  She consistently wears that infectious smile on her face as she prepares to stare down cancer once again.  I really don’t know how she does it every single week, but she just refuses to let cancer get the best of her.  I have such admiration for her strength and resolve.

Many have asked how Megan remains so strong when facing such adversity.  First, I truly believe she draws strength from all of the “Team Megan” members who are in her corner.  I don’t know how we could ever thank everyone for the support you have given Megan each and every day of this battle.  Megan has also connected with other teenage cancer victims from all over the world, and these young ladies have proven to be a vital source of strength and understanding for her.  Readers of this blog know that early in Megan’s treatment, she connected with Kasey Harvey from San Diego.  Kasey is a remarkable young lady, and she and Megan remain close to this day.  Megan also connected with Mia, who tragically lost her battle with this dreaded disease.  She was an incredible person who Megan felt a unique connection with.  Megan still wears Mia’s necklace every day, and I know it brings her both strength and a sense of peace.  Recently, Megan has also connected with a young lady from Boston, a girl from London, and another from Australia.  In fact, yesterday Megan spent two hours FaceTiming her Boston friend who also recently relapsed.  Then last night, she FaceTimed her friend from Australia for 90 minutes.  Although Megan has some very close school friends, none of them can truly understand her thoughts and fears the way these fellow cancer patients can.  They speak a language that none of us could ever really comprehend.  Everyone around Megan shows her tremendous compassion, but these incredibly brave young ladies have provided a level of support and understanding that has proven so beneficial to her mental state.  I am so sorry these young ladies are also battling this ridiculous disease, but I am very thankful they have all found each other.

After Monday’s treatment, Megan came home and went right to the couch to get some rest.  Of course, resting with Ophie makes everything seem a little more tolerable 🙂

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Megan once again responded pretty well to this treatment.  Other than the skin irritation, fatigue, stomach pain and headaches that have accompanied these new chemo drugs, Megan has been handling the treatments pretty well.  She has not thrown up since the very first treatment, and we are very hopeful that trend continues over the next 31 weeks.  By Wednesday, Megan felt well enough to go back to school for a little while.  It’s good to see her body handling the treatment better than we had expected.  It’s hard enough to watch your child receiving these awful treatments, but when she throws up as a result, it is agonizing.

On Tuesday night, Kenzi had to attend the NHS induction ceremony at the high school.  Although she was inducted last year, all of the current members attend the ceremony to welcome the new members.  It is so strange going to all of these events and realizing it is the last time for her.  I still can’t believe she is a senior!!!  Here is a picture of Kenzi with some of the other NHS senior girls at CCHS.

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After the induction ceremony, Makenna Emerson and her boyfriend Ryan came over to join a big game of Pictionary with Megan, Deb, Kenzi and Nick.  It was good to see Megan feeling well enough to enjoy herself.

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Megan also started her homebound tutoring this week.  Although Megan is still going to school for a couple classes, her medical appointments and chemo treatments were making it far too difficult for her to keep up with all of her classes.  Luckily, Miss Erb is once again tutoring Megan twice a week at home.  Megan adores Miss Erb, and we are so thankful she is taking time out of her very busy schedule to help Megan.

On Saturday night, Coal City High School sponsored a Dance Marathon to raise money in Megan’s name for donation to Luries Children’s Hospital and the “Cure-It Foundation”.  Megan didn’t feel well enough to go, but Kenzi and Nick went.  The night was a huge success as the students raised lots of money for a great cause.  Many thanks to the high school administration and students for making this event a reality!  Here are a few pictures we took prior to the dance.

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Makenna stopped by to grab a picture with Kenzi 🙂

Later Saturday night, Megan seemed to grab her second wind as Makenna and Ryan came over to eat supper with her and play some games.  Megan soon talked them into playing ping pong with her in the basement.  Here is a picture of an intense game between Megan and her mom 🙂

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It’s been a good week for Megan as she continues down her 36 week journey towards recovery.  Although she is dealing with the many unpleasant side effects that accompany chemotherapy,she is working hard to keep her body strong.  She is going to physical therapy twice a week and trying to keep herself active.  We know there is a cumulative affect with chemo, but she is trying her best to continue enjoying life in the face of cancer.  Tomorrow morning, we head back to CDH for the final treatment of the second round.  Megan is ready.  Her spirit is unwavering and her resolve is steady.  Cancer is going to lose this battle.  It’s only a matter of time.

The Bright Lights of the Stage

It’s been a crazy week around our house, but I really don’t think it could have turned out any better.  Megan and Kenzi both had parts in the Coal City High School production of “The Little Mermaid”, which took place this weekend.  We knew it would be an emotional weekend because, as a senior, this was Kenzi’s last show, and it was Megan’s first show at the high school level.  Last year, Megan could not audition for the musical because she was in the midst of her chemotherapy treatment.  Ever since we found out Megan had relapsed, we have been holding our breath hoping she would still be able to perform in this weekend’s production.  We were even more nervous knowing she had a tough chemotherapy treatment this past Monday, because it’s so hard to predict how her body will respond following these treatments.  However…we all should have known that she would find a way to be up on that stage, because she refuses to let cancer ever feel like its got the upper hand in this battle.

On Monday, Megan had to be at the CDH clinic at 8:30 a.m. so Nurse Jenny could access her port.  As always, they had to take a blood sample to make sure her counts were high enough to safely accept the chemo treatments.  They also wanted to check her lipid levels, which meant she had to fast for 12 hours prior to the blood test.  One of the chemo drugs she is taking can raise lipid levels, and during her last blood test they were a little high, so her oncologist wanted to check them after fasting just to make sure.  While we were waiting for the blood test results, we discovered that little Ellie was there for treatment as well.  Unfortunately, Ellie relapsed about three weeks prior to Megan.  It made Megan’s morning to play with Ellie for a while.  Megan thinks she is the cutest little thing ever!

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After Megan’s counts came back okay, we headed to our in-patient room on the pediatric floor of CDH.  Nurse Kathy escorted both Megan and Ellie up to their respective rooms, and then we waited to get the chemo started.  This was the start of the second three week round of chemo for Megan, which meant she was getting all three chemo meds.  During her first round, she really struggled with this combination as it caused her to throw up in the middle of the night.  If she didn’t respond well again, she would have to stay over night, but if she did okay, her doctor gave her the option of going home.  I think that was all of the motivation Megan needed, because she really did well throughout the day.  I think it helped that she was able to keep herself very busy while receiving her chemo infusions.  She went to talk to Nurse Mariel, and then she stopped in to Ellie’s room to talk with Ellie and her mom.  After that, she wanted to go to the teen room to play foosball.  In fact, we played quite a few games of foosball as Deb and Megan took me on, and then we switched up the teams.  Kenzi couldn’t come because she had an 8 hour musical rehearsal that day.  Before we knew it, it was 4:00 p.m. and we were closing in on the end of her treatments.

Megan was hungry and craving a turtle sundae from Dairy Queen, so she sent Deb out to get it for her.  I’m pretty sure that sundae hit the spot 🙂

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After the turtle sundae delivery, Deb went home to meet up with Kenzi, and I stayed with Megan for the remainder of the evening.  After her final chemo treatment, she had to receive another medication, and the final dose could not be given until 11:00 p.m.  Since there was more time to kill, Megan walked back over to Ellie’s room for a visit, and then came back to do some coloring.

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So far, Megan had been responding very well, so at about 11:30 p.m. we got the okay to head for home.  Megan was elated that she would be able to sleep in her own bed.  Once we got home, she actually slept through the night and did not throw up at all!  We were so relieved.  Now the next test was to see how quickly she could recover, and would it be in time to perform in the musical this weekend.

Not surprisingly, Megan slept until almost 11:30 a.m. on Tuesday morning.  Chemotherapy hits you hard, and sometimes rest is the very best medicine.  When Megan got up, she said she was hungry, which was the first good sign.  Then she surprised me by saying that she was going to musical rehearsal, which was scheduled from 4-8:00 p.m.  At about 2:00 p.m., she called to tell me that her hair falling out was driving her crazy and she wanted to get it cut off.  We had been worried how she would handle losing her hair again, so I was encouraged when she decided to take control of the situation.  I told her I would call to get her an appointment, which is when she said that she wanted it done before she went to musical rehearsal.  She said the hair stylist for the musical would be at rehearsal, so why couldn’t he just do it for her before rehearsal.  I called Chad White who said he would be happy to meet her a few minutes prior to rehearsal and cut it.  He offered to come to our house, but Megan said it would be easier to just do it in one of the back rooms of the auditorium.  I reminded her that there could be kids at the school who would see her, and she said she didn’t care.  I also asked if she wanted to bring a hat with her, and she said no.  I think she was much more prepared for this than Deb and I were.  Here are a couple pictures of her getting her hair cut while Deb, Kenzi and I were there for support.  Her mental toughness and positive attitude never cease to amaze me.

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Just in case Megan was unable to make it to the dress rehearsal on Wednesday or the first show on Thursday, the director had a plan for someone to step in for her.  However, Megan was not about to let cancer deny her this opportunity again.  She got herself together and performed for the school on Wednesday, and then was ready for opening night on Thursday.  She made every single performance for the weekend!  The show was incredible as every show sold out (820 seats).  Kenzi nailed her role as on of Ariel’s six sisters, and Megan did a tremendous job in the ensemble.  She even had a short solo in the second act!  We were so proud of both girls!!! Here are a bunch of pictures from the fabulous weekend.

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Relaxing for a few minutes before heading to the school for Thursday’s opening night.
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Kenzi performing on stage.
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Megan singing her solo.
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Right after opening night.

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The Cougill family came on opening night. Here are the girls with their granddaughters, Ava and Maddie.
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Megan and her good friend Katelyn
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Grandpa and Grandma Bugg came on Friday night. Uncle Todd and Gina came also, but I wasn’t able to get a picture before they had to leave.
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For Saturday’s Matinee, Aunt Janet and Carly surprised the girls with a visit.
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Grandma Irene also made it to Saturday’s matinee.
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Grandpa and Grandma Coope rounded out the family at Saturday’s afternoon performance.
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The girls were so excited that their “Aunt Tammie” came to watch them. She made 10 dozen cupcakes for the entire cast on Wednesday. She’s the best!!!
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With Kenzi’s good friend Leah, who did an amazing job playing the part of Ursula.
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Megan was thrilled that Nurse Laura (left) and Nurse Kathy both came to see her perform on Sunday. They are such amazing people!

Needless to say, after receiving three chemo treatments on Monday, a four hour rehearsal on Tuesday, and five straight days of performances, Megan was pretty worn out.  However, she still wanted to go to the cast party, which is where she still is as of 7:30 p.m.  She will definitely sleep well tonight! 🙂

Tomorrow, the festivities are over as Megan heads back to CDH for another chemo treatment.  She will receive two chemo treatments in the morning, and then she has to see another doctor after that.  Hopefully, the side effects don’t hit her too hard this time.  She is still fighting some issues with mouth sores, but we feel so fortunate that the nausea has not hit her for the past three weeks.  She still gets stomach pain, skin irritation, headaches, and some of the other nasty stuff that accompanies chemotherapy, but that nausea is just the worst.  Hopefully, she is able to keep that nastiness at bay.

I’ve said it many times before, but after this weekend, I believe it more than ever.  Cancer is a formidable opponent, but it is no match for determination, perseverance, and an absolute refusal to lose.  This weekend, Megan once again showed that this battle is all about mind over matter.  I have never seen her more determined than she was this week.  There was no way cancer was going to keep her from experiencing “The Little Mermaid.”  Now that the musical has ended, it’s time to focus on taking down cancer once and for all!

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It’s Show Week!

When Megan found out she had relapsed, one of her first questions for the doctor was whether or not she could still participate in the Coal City High School Production of “The Little Mermaid”.  Megan fell in love with the stage when she was an 8th grader performing in “High School Musical 2”.  Like her dad, she has always been an introvert, but when she discovered the stage, she felt a newfound freedom to be whoever she wanted to be.  It was an amazing feeling for her, and one she couldn’t wait to experience again as a freshman in high school.  Unfortunately, cancer’s evil grasp took hold of Megan only two months after her 8th grade musical performance.  Her treatment schedule didn’t allow her to participate in the school musical during her freshman year, so when she was finally in remission, she couldn’t wait to audition and be a part of this year’s musical production.

Being in the musical has been such a tremendous motivation for Megan as she undergoes her second go around with this ridiculous disease.  It allows her to keep in contact with her friends; to stay physically active; and most importantly, it provides a diversion from the mental battle she is fighting each and every day.  As I have said many times, fighting cancer is just as much a mental battle as a physical one.  Keeping your mind right is absolutely necessary if you are going to beat down cancer.  The disease hopes that it can keep chipping away at your mental state until you finally just give in and let it win.  Megan has never let that happen, and I am convinced it is why cancer has been unable to beat her.  Right now, her participation in the high school musical is helping keep her mind right as she prepares for the next 33 weeks of battle.

It’s going to be an exciting weekend, as Kenzi is also in the musical as one of Ariel’s sisters.  Kenzi has been involved with the musical performances since 8th grade, and she has worked so hard to try and get an important role, which she finally achieved during her senior year.  As readers of this blog know, Kenzi has had a very active high school career as she has been involved in basketball, volleyball, speech, and various other clubs.  She has had a tremendously successful high school career, but I believe the one activity she would never give up is the experience she has had with the musical productions.  Just like Megan, it seems to be the one place where all of her worries and stresses go away.  By the way, speaking of Kenzi’s athletic career, she found out this past week that she was named to both the Kankakee Journal and Morris Daily Herald All-Area basketball teams.  We are so proud of her!

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Kenzi with her head coach, Brad Schmitt

This past Monday, Megan had her final chemo treatment of her first round.  She and Deb left for CDH at about 7:00 a.m.  As usual, Nurse Jenny was there to meet Megan.  She still believes that no one is as good as Jenny at accessing her port.  Megan was due for a dose of Temsirolimus, which is a chemotherapy drug that can cause some skin irritation.  As a result, Megan had to take a dose of Benadryl before she got to the hospital, which tends to make her a little goofy.  As a result, she was pretty happy when she got to the CDH clinic 🙂

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Before she could receive her chemo treatment, they had to take a blood test to make sure her counts were high enough.  Her white counts were low, but not so low that she could not accept the chemotherapy.  While she was waiting for her blood counts to come back, Megan received a visit from Alli, who is a Child Life Specialist at the CDH pediatric clinic.  During Kenzi’s volleyball season, her team held a “Team Megan” night to raise money for the CDH cancer clinic.  Thanks to the generosity of so many people, the money raised was used to purchase a puppet to help children better understand what happens to their bodies during cancer treatment.  The puppet can be used to allow children to access a port.  The puppet’s hair also falls out so kids can be prepared for what chemotherapy treatment will eventually do to them.  It also has internal organs that the kids can see so they know where their cancer is on their bodies.  Alli said it will be an amazing teaching and coping tool for kids who are forced to fight this ridiculous battle.  Thank you so much to Coach McMurtrey and all of the Coaler volleyball girls for making this donation possible.  I know Megan was really pleased that the donation would be used to help other kids.  Here is Megan checking out the puppet by accessing its port.

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After Megan received her chemo treatment, she came home and rested for the rest of the evening.  There is nothing better than coming home to Ophie 🙂

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Luckily, she recovered quickly from this treatment and was able to go back to school and musical rehearsal the next day.  Since her white counts were low, she had to continue with her Neupogen shots.  Thankfully, Nurse Kortni is right next door and always takes care of Megan’s shot.  We are so lucky to have her as a neighbor…Thanks Kortni!!!

On Friday, Megan had to go back to CDH to get her blood counts checked to be sure she would be able to accept her chemo treatments scheduled for Monday.  We got to the clinic at about 9:00 a.m. and Nurse Jenny once again met us to access Megan’s port.  The clinic was very busy, so we had to wait quite a while to see Dr. Hayani.  In the meantime, Megan decided to entertain herself by blowing up a surgical glove 🙂

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When that got boring, she thought it would be fun to try and play volleyball with it.  Needless to say, we weren’t too successful with that endeavor 🙂

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Luckily, Megan’s white blood cell counts recovered enough that she no longer needed the Neupogen shots.  That means that on Monday, Megan will be checking into the hospital to start her second three week round of treatment.  This one is tough for her because she gets Cyclophosphamide, which always makes her nauseous.  Megan is really hopeful she can come home late Monday night, but if she is throwing up, her doctors will not let her check out for fear of dehydration.  Let’s hope this one goes better than it did last time.

When you watch Megan day to day, she makes this process seem so much easier than it is.  Whenever anyone is with her, Megan flashes that infectious smile to let everyone know she has this under control.  Sometimes it can be hard for people to really understand how hard this is.  Not only is she fighting a life threatening disease for the second time, but she is also fighting back the nasty effects of chemotherapy.  She is tired virtually all the time.  She takes multiple medications each day to help stave off the many side effects she is experiencing. She takes a drug three times a day to help her mouth sores.  She has to take two drugs to help her digestive system.  She takes a drug to keep her from infection.  She takes a drug to help with anxiety. She uses a cream to help with the chemo-induced skin irritation on her arms and face.  We have medications on hand to help with pain when the chemo headaches become unbearable.  She is going to physical therapy to try and keep her foot drop from coming back…even though she had not yet fully recovered from the last time.  Also, she has started the heartbreaking process of losing her beautiful hair again.  For a teenage girl, the hair loss is so hard…especially when she has seen it take a year to come back from her first bout with chemo.  Megan is so positive and so strong, but don’t ever let that fool you into thinking this is easy.  It’s so hard…and it’s so hard to watch her go through it yet again.  I hate cancer with a passion!!!

Tomorrow is the start of chemo cycle #2.  Although this one tends to hit her hard, we are so hopeful that she recovers in time to make Thursday’s opening night for “The Little Mermaid.”  Somehow, I have a feeling she will be on stage Thursday night.  Cancer will not ruin this for her!!!

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We can’t wait to see both of our princesses on stage this weekend.

Until next week…

 

The Show Must Go On

Since the devastating news of her relapse, Megan is now two thirds of the way through her first of 12 chemo rounds.  This new treatment protocol requires her to go to CDH once a week for chemo treatment where she receives three different chemo medications in week one, two of them in week two, and only one in week three before starting the process all over again.  During her first fight with this ridiculous disease, Megan would have an intense week of treatment lasting three to five days, but then she would get about two weeks for her body to recover.  Although it is good that she no longer has those long hospital stays, after only two weeks we are finding that the lack of a break is already taking a toll on her body.  It’s incredibly hard to watch her suffer through the side effects of chemotherapy all over again.

On Tuesday of this week, Megan had her second treatment of this round.  She received Vinorelbine and Temsirolimus, which meant she could complete this treatment on an outpatient basis.  During the first round, she also received Cyclophosphamide, which is the devil for her.  It always causes her nausea and requires an overnight hospital stay so her doctors can give her two doses of a follow-up medication to protect potential damage to her bladder caused by that nasty drug.  Megan had to get up at about 7:00 a.m. so we could get out the door by 7:30 a.m.  In the morning, she goes through her old routine of putting numbing cream on her port location so it doesn’t hurt as bad when she gets it accessed at the hospital.  We arrived at about 8:45 a.m. where Megan was greeted with the usual smiles and hugs she receives from all of the wonderfully kind medical professionals at the CDH clinic.  Nurse Jenny was on vacation, so Nurse Susie accessed Megan and took a blood sample to make sure her counts were high enough to receive her chemo treatment.  Fortunately, her counts were good, but we had to wait about 40 minutes for her chemo to arrive from the pharmacy.  During that wait, Dr. Salvi came in to examine Megan.  I was really proud of Megan because she had lots of questions for Dr. Salvi, and of course, he took as much time with her as she needed.  Fighting cancer has caused her to grow up far too soon, and she has realized that she has to be the chief advocate for her body.

At about 10:20 a.m., Megan started her treatment of Temsirolimus.  Prior to starting this particular chemotherapy drug, Megan has to take a dose of Benadryl because the drug can cause irritation to the skin.  Of course, if there is a side effect, Megan seems to experience it.  During her first week, she did have skin reactions to her face and arms that were caused by the drug.  In fact, she is still fighting off the itching sensation on her arms.  Megan hates taking Benadryl because she doesn’t like the way it makes her feel, but it is the lesser of two evils in this situation.

As I watched Nurse Susie hang the first bag of chemotherapy on Megan’s IV pole, I once again found myself getting emotional.  In the simplest of explanations, chemotherapy is poison.  It’s purpose is to kill all of the fast growing cells in the body, which cancer cells are.  Unfortunately, cancer cells are not the only fast growing cells in the body as there are many other cells that chemotherapy also attacks indiscriminately.  Chemotherapy treatment is the barbaric process of trying to kill all of the cancer cells without also killing the patient.  Knowing your child has no choice but to take this poison is so hard to witness.  It’s still hard for me to believe that with all of the technological breakthroughs society has made, we still continue to treat childhood cancer essentially the same way we did 20 years ago.  It not only makes me sad to watch Megan go through this treatment (again!), but it also makes me so angry that our government and medical science cannot do better by our children.  It’s ridiculous!!!

As always, Megan smiles at the nurses as they start her treatment, but then she tries her best to go to sleep until the one hour infusion is over.

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After her infusion finished, she then received a short ten minute push of Vinorelbine and we were out the door for home.  It was a good sign that Megan was hungry on the way home, so we stopped to get her something to eat.  However, once we got home, she was exhausted and immediately went up to her room and slept for over three hours.  Two treatments down and 34 to go.

One of Megan’s goals throughout her treatment is to still participate in the CCHS musical production of “The Little Mermaid.”  She and Kenzi both have roles in the show as Kenzi is cast as one of Ariel’s sisters and Megan is in the ensemble.  As a member of the ensemble, she also has a short solo that she will perform.  Megan loves the theater, so when she was initially diagnosed with her relapse, one of her first questions was whether or not she would still be able to perform in the musical.  Her doctors told her that as long as her blood counts were good, she could do whatever her body would allow her to do.  Megan was definitely encouraged by that news.

Once she got home from Tuesday’s treatment, she thought she was going to make it to rehearsal that evening, but as badly as she wanted to go, her body told her it wasn’t going to happen.  She was just too worn down to go.  The next morning, she planned to go to school, but once again, she was too exhausted.  Unfortunately, she is also starting to experience some detrimental side effects earlier in the treatment process than we had hoped.  She has been dealing with some severe stomach pains that keep her curled up in her bed on frequent occasions.  On Friday, she also started to get sores in the back of her mouth which have us very concerned.  Those mouth sores are so painful and can quickly get to the point where she cannot even eat solid food.  Nurse Kathy called in a prescription for medication that she is taking four times per day to try and stave off the sores, but they seem to be in the process of getting worse.  On Sunday, eating solid food was becoming more and more difficult, so hopefully the medicine starts to work and her mouth begins to feel better soon.

Even with the fatigue, stomach pain and mouth sores, she has still been getting herself up and around for musical rehearsal.  On Thursday and Friday nights she went to long rehearsals and came home exhausted.  On Saturday morning, the musical cast was hosting a character breakfast at the high school.  Megan and Kenzi were both going because they were going to be in full costume for the event.  Megan woke up with severe stomach pain and her mouth sores were worse than the day before.  At first, she said she just didn’t think she could make it, so we sent her director a text to let him know.  However, about 30 minutes before she was supposed to be there, she told Deb that she was going.  She got herself ready and off she went.  Given everything she is dealing with, I know most adults would have been content to curl up in bed for the day and just sleep it off.  Megan is such a warrior, and she is absolutely determined not to let cancer take her life from her.  She was not about to let cancer win.  Here are a few pictures from Saturday morning’s character breakfast.

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Megan and Kenzi in costume.
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Megan and her good friend Katelyn on stage.
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The girls with Princess Ariel.
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With Prince Eric
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Ursula is played by Kenzi’s good friend Leah Campos.
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Scuttle is pretty funny!:)
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Megan with her Director, Jack Micetich

Megan was there for about three hours, and as soon as it was over, she called for us to come and pick her up.  She was so tired and said her stomach was killing her.  She came home; tried to eat a little bit; and then went upstairs for a much needed three hour nap.  I was so proud of her for going to the event on Saturday, but I really don’t know how she does it.  Her body is filled with poison, yet she still manages to keep a smile on her face for all of the little kids who attended the event.  Cancer is a formidable adversary, but I just know it is no match for Megan’s tenacity and spirit.

Today was more of the same for Megan as musical rehearsal was scheduled from 2:30-8:00 p.m.  Megan felt awful and went up to her room for a nap at about noon.  She woke up at 2:45 p.m., which is when Nurse Kortni from next door came over to administer her shot of Neupogen, which is meant to help her white blood cell counts to recover following chemo.  After that, Megan took some medication for her mouth, packed a bag with Tums, Tylenol and water and said she was ready to go to rehearsal.  As of this posting, she is still there doing what she loves.

On Monday, Megan is back to CDH for her final treatment of the first round.  Cancer has already hit her hard, but I know Megan will leave the ring victorious after round one.  Sooner or later, cancer is going to have to give up the fight, because there is no way it’s going to beat her…NO WAY!!!

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“Refuse to lose, refuse to be defeated, refuse to be cheated, and refuse to have regrets.”

Celebrating the Small Victories

When I last posted on Wednesday night, Megan had finished receiving her third chemo drug of the day and was struggling to get through the night.  Since this is a relapse for Megan, her doctors are treating her with a different mix of chemo drugs than she had during her first go around.  The only drug that is the same is Cyclophosphamide, which unfortunately has always been a tough one for Megan.  This drug has always given her issues with nausea, and this round was no exception.  Thankfully, she only receives this drug during the first week of each three week cycle.  In the second week of each cycle, she will receive the other two chemo drugs:  Vinorelbine and Temsirolimus.  In week three, she will only receive the Vinorelbine.  Her oncologists said that weeks two and three of each three week cycle can be completed as an out-patient, which was good news for Megan because she really hates the hospital stays.  One of the key lessons we learned during Megan’s first foray into chemotherapy was the importance of celebrating each small victory.  Looking at the long haul is just too overwhelming, so you have to break this marathon into a series of smaller races and celebrate each victory as it comes.  Therefore, we are happy that Megan is a third of the way through her first of 12 three week chemo cycles.  However, this victory has not come without a fight.

In Wednesday evening’s post, I wrote that Megan was trying to go to sleep to avoid the nausea that has often plagued her with Cyclophosphamide.  She took all of her usual anti-nausea medications to ease the effects, but it was still a very long night for her.  She could only sleep a few minutes at a time before the stomach discomfort would hit her.  She tossed and turned all night trying to find some relief, but to no avail.  She also tried moving from her hospital bed to the recliner, and then to the couch, but nothing seemed to help.  She said she could tell that sooner or later she was going to throw up, but she just didn’t know when.  I tried rubbing her feet and legs, which in the past has seemed to help stave off the nausea, but nothing seemed to be helping.  Finally, at about 3:30 a.m. she threw up for the first time, and then threw up again at 4:15 a.m.  I am always amazed how she handles getting sick.  While I am an absolute emotional wreck, she calmly asks for a glass of water to rinse her mouth and a washcloth to wipe her face.  She never gets upset or panicked.  The grace and dignity she continues to show is such a testament to her determination and character.  Finally, at about 5:00 a.m., she was able to get some restful sleep.

Dr. Salvi came in to see her at 7:00 a.m. and released her to go home whenever she felt up to it.  Normally, as soon as Megan hears that she is anxious to head back to the comforts of home.  However, this time she was so tired that she went back to sleep and didn’t wake up until about 10:20 a.m.  By the time she got all of her medications and discharge papers, it was about 12:30 p.m. when we headed for home.  On the way home, the best sign of all was that she was craving some chicken nuggets from Wendy’s, so I gladly made that stop:)

On Thursday afternoon and evening, Megan was pretty tired as her body was recovering from the impact of three chemotherapy drugs.  However, on Friday, she seemed to be doing much better.  In fact, she was adamant about going to musical rehearsal on Friday afternoon, which lasted for three hours.  It is fantastic that she has something like the musical to keep her motivated.  She absolutely loves participating in the rehearsals, so it is some extra motivation for her to recover so she is able to attend as many rehearsals as possible.  The physical activity and social interaction is so healthy for her as she battles cancer and the effects of treatment.

Kenzi also had musical rehearsal on Friday, and as soon as she was finished, we headed up to the University of Wisconsin for another college visit.  Ever since her first visit there this past summer, she has been enamored with the campus.  After she was recently accepted, she wanted to make one more visit before formally accepting their offer of enrollment.  Luckily, there is a former Coal City High School graduate who is currently a sophomore there.  When Kenzi was a sophomore, she played volleyball and basketball with her.  This student generously offered to meet Kenzi on Saturday morning and show her around the campus one more time.  Of course, it was a beautiful day in Madison, which made the visit even better.  Being with Kenzi for a little while was lots of fun, and I’m happy to report that she is now officially a Wisconsin Badger.  I know it was a big relief for her to finally make such an important decision.  Here is a picture of Kenzi in our hotel room on Friday night.

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We also learned this week that Kenzi was named to the First Team Interstate-8 All Conference Team in basketball!!!  With this recognition, she became a two sport first team all conference athlete (volleyball and basketball).  We are so proud of everything she has accomplished in her high school career, and we can’t wait to see what college has in store for her.

We had originally planned on all four of us going to Wisconsin for the weekend, but when we got the news of Megan’s relapse, we knew it would not be smart to plan on her traveling that far.  Instead, she and Deb planned a mommy-daughter weekend.  On Friday night, Deb and Megan went to Red Lobster to eat.  Here they are waiting for their food, while Megan flashes that infectious smile of hers.

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After supper, Megan wanted to go to the boys basketball game at the high school.  It was senior night and she wanted to watch the Poms and Cheerleaders perform their halftime shows.  After halftime, she said she felt good, so she stayed at the game with Makenna Emerson.  On Saturday morning, she and Deb planned a big shopping day.  They left the house at about 11:00 a.m. and didn’t come back home until after 4:00 p.m.  While they were shopping, they came across two Greyhound dogs that had been rescued.  Of course, being the animal lover that she is, Megan couldn’t resist playing with them for a little while.

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Megan also had to stop at the pet store to give some of the dogs some attention.  She always feels bad for the dogs that are kept there, and it makes her feel good to play with them for awhile.  This time, she decided to give this poodle some loving.  Megan always says that puppies make her happy 🙂

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Kenzi and I got home at about 4:00 p.m. on Saturday afternoon.  When Deb and Megan got home, Megan was pretty worn out.  She went upstairs to take a nap because at 6:30 p.m. she had planned on having three of her friends come over for a sleep over.  It has been so good to see Megan staying socially and physically active following this initial chemo treatment.  As long as she stays healthy, we are going to focus on keeping her as physically and socially active as possible.

Megan received a very special gift in the mail this week from her late friend Mia’s mother.  Mia was so special to Megan, and her passing has really been difficult.  Megan takes comfort in knowing Mia is looking after her and has her arms wrapped around her as she fights this battle with cancer.  To help Megan know that Mia is with her, her mom sent Megan the necklace that Mia wore every single day until cancer tragically and unfairly took her life.  It was an emotional moment for Megan to get the treasured necklace, but she quickly put it on and wore it with pride.  I really don’t believe it is just a coincidence that both girls’ names start with an “M”.  I know Mia’s fighting spirit will only fortify Megan in her fight against this dreaded disease.  Many thanks to Mia’s mother for her kind and generous gift.  Mia’s family has become very special to Megan and our family.

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Although we are celebrating the fact that Megan has one chemo week behind her, the reality is that she steps back into the ring on Tuesday for week two of this first round.  Megan is going to win this battle, and anyone who doesn’t believe that doesn’t know Megan very well.  She is strong and she is determined…which means cancer is in serious trouble!!!

“Dad…Don’t be sad. It’s okay.”

About a week and a half ago, we received the devastating news that the lump in Megan’s left breast was confirmed as a relapse of her Aveolar Rhabdomyosarcoma.  After being in remission for a year, we were all so hopeful that Megan had beaten this monster once and for all.  She was just beginning to recover the life cancer so rudely tried to take from her as she was starting to regain her social life with friends, and she got a part in the upcoming Coal City High School performance of “The Little Mermaid”.  We have learned the hard way that cancer is a ruthless opponent that does not give up easily.  After learning the results of Megan’s breast biopsy, her doctors ordered the same battery of scans Megan had when she was first diagnosed in December, 2014.  It’s not so much the tests that were tough on Megan, but rather the anxiety that accompanies the agonizing wait for the results.

Initially, we were encouraged because her CT and MRI showed only the one tumor in her breast.  Her oncologists did an initial review of her PET scan, which also didn’t seem to show no further activity.  We were so hopeful that with no further cancerous activity, Megan could have the cancerous mass surgically removed, followed by radiation and avoid the nastiness that accompanies chemotherapy.  However, on Monday afternoon, we received the call we were hoping would not come.  Her doctor said that upon further review at Lurie’s Children’s Hospital, the pathologist discovered an area of potentially cancerous activity in her lower spine.  After consulting with their team, they decided that given Megan’s history as a serious stage 4 cancer patient, she would require chemotherapy.  I was nearly speechless on the other end of the phone.

We broke the news to Megan, and of course she was initially emotional, but she quickly got it together and had lots of questions about what happens next.  We got in the car and drove up to CDH to meet with her doctor and Nurse Kathy.  They explained that Megan would undergo 36 weeks of chemotherapy.  Because this is a relapse of her original cancer, the chemotherapy protocol is different than she experienced with her original 54 week protocol.  This time, she will get four different chemotherapy drugs administered in three week cycles.  Each week, she will go one day per week to receive her treatment.  The first week, she will probably have to stay overnight because the chemo drug requires a follow up drug and observation.  However, in weeks two and three, she should be able to complete her treatment out-patient in the CDH clinic.  After week 12, they will scan Megan and begin her radiation treatments.  Of course, we had lots of other questions for her medical team, but that is the basics of this 36 week chemotherapy protocol.

Her doctor asked Megan if she was ready to start the treatment on Tuesday, but Megan said no because Kenzi had a basketball game and it could be her last one.  Dr. Salvi agreed to start her treatment today.  I continue to be absolutely amazed at Megan’s determination, resolve and bravery as she faces down this beast once again.  In fact, towards the end of our meeting on Monday afternoon, all Megan seemed to be worried about was getting back to the high school by 7:00 p.m. for musical rehearsal 🙂

Early this morning, we packed Megan’s overnight bag and headed up to CDH to start another 36 week battle with cancer.  It all seems so unfair, but Megan never shed a tear this morning.  In fact, she was really positive and seemed almost anxious to step back into the ring and kick cancer’s butt once and for all!!!

When we got to CDH, Megan was met with a hug by Nurse Jenny.  Nurse Kathy was also there ready to look after Megan like she always does.  So many people stopped to see her and wish her well.  Even though I hate that place so much, I absolutely love all of the people there.  They are all so caring and compassionate to Megan.  They make an awful situation at least a little bit tolerable.

After Nurse Jenny accessed her port, Nurse Kathy walked Megan up to the pediatric floor where she would receive her chemo treatments.  Amazingly, Megan was all smiles the entire way there.  By the way…everyone loved her soft, fuzzy robe 🙂

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When we got to the room, Megan’s very first nurse, Mariel, had left her an inspirational note and a gift.  It made Megan so happy.  Thanks Mariel!!!

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After she got her blood work finished, she was starving for McDonald’s pancakes.  Here she is carb loading before receiving her treatments.

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We had to wait until almost 3:00 p.m. before she was able to get her first chemo infusion.  I was sitting in a chair across from her as the nurse hung the first of what I know will be 36 weeks of chemotherapy.  I was admittedly getting emotional when Megan looked at me, smiled and said,

“Dad…Don’t be sad.  It will be okay.”

As she has done so many times before, she was taking much better care of me than I was of her.  She is wise beyond her years, and she never ceases to inspire me.  It only took those few words from her to convince me, but I know she will be okay.  She will win, because losing is not in her vocabulary.

No matter how positive you are about treatment, chemotherapy is still a brutal drug.  It only took about 30 minutes for the nausea to hit Megan hard.  She took a dose of Benedryl and did her best to sleep it off.  As I type this message, she is currently resting as she completes her third and final chemo treatment of the day.  I am so hopeful she is able to get some rest tonight without the chemo-induced nausea causing trouble.  As brave as she was today, she deserves a good night’s sleep.  If all goes well, we should be home by noon tomorrow.  Nothing aides her recovery more than being home with all of her furry friends.

It’s such a helpless feeling watching your child fight cancer the first time.  Watching her do it for a second time is heartbreaking. During Megan’s first go-around with cancer, one of our family mottoes was,

“Life’s not about waiting for the storm to pass.  It’s about learning to dance in the rain.”

We are going to do our best to take Megan’s lead and keep dancing.  Thanks to everyone for your thoughts and prayers for Megan.  She is going to win!!!

Everything is Relative

Over the past two years and two months, we have learned more about cancer than we ever cared to know.  One of the toughest lessons we have learned is that cancer is a ruthless opponent that does not give up easily.  Just when you think you have gained the upper hand, cancer has a way of reminding you that its omnipresence is not going away without a fight.  On January 25, 2016, Megan completed her 54 weeks of intense chemotherapy and radiation and her doctors declared her cancer officially in remission.  On January 25 of this year, we celebrated her one year anniversary of being in remission, but cancer wasn’t about to let Megan celebrate for long.  Soon after, Megan found a lump on her left breast.  Last week, she had an ultrasound, which verified the mass, which was followed by a biopsy that verified the lump was a cancerous tumor.  Worse yet, lab tests showed it was a relapse of Aveolar Rhabdomyosarcoma, which is the same cancer Megan originally fought.  Now the question for the doctors was to determine if the tumor was localized or had metastasized through her body.  Obviously, a localized cancerous tumor is much more treatable than Stage 4 cancer, which is what Megan fought the first time.  To determine the extent of her current relapse, her oncologists ordered a PET scan and CT scan, which she had on Monday, and a brain and chest MRI followed by a bone marrow test, which she underwent on Thursday.

On Tuesday, we received the news that Megan’s PET and CT scans showed no further cancerous activity other than the one breast tumor.  This was very encouraging news!  On Thursday, Megan had to be at CDH at 6:30 a.m. to get checked in and prepped for her 8:00 a.m. MRI of her brain and chest, as well as her bone marrow test.  Megan’s issues with claustrophobia make the brain MRI very difficult for her.  They put her head in a helmet and the entire process takes about an hour.  She is a very tough kid, but she has tried to complete a brain MRI in the past, and it was just too much for her.  When I see her head in that helmet, I really don’t think I could do it either.  Therefore, she has to be under anesthesia for the MRI.  For this particular MRI, the doctors ordered a scan of her brain, followed by a scan of her chest, and then they wanted a second scan of her brain with contrast.  After that, her oncologists would come over to complete the bone marrow test in two different spots on her lower back/hip area.  When we met with the anesthesiologist, he said the entire process would take about four hours to complete.  Obviously, Megan wasn’t thrilled with the thought of being under anesthesia for four hours, but like she has done so many times before, she put a smile on her face and told the doctor she was ready to go.  Her positive attitude and mental toughness in the face of such adversity never ceases to amaze me.  I know she kept that smile on her face because she didn’t want me to worry about her.  Here she is just before heading off to la la land.

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At about 12:30 p.m., I was finally called back to the recovery room to see her.  She was pretty tired, but her doctor said she did fantastic.  Other than a really sore backside from the bone marrow test, she was none the worse for wear.

On Friday afternoon, we received the results of her brain and chest MRI.  We were so relieved to know that the chest MRI showed no further cancerous activity other than the one tumor on her left breast.  The brain MRI also showed no obvious cancerous activity, but it did show an inflammatory process at her right temporal mandibular joint.  Dr. Salvi did not believe it was cancerous, but he still wanted to meet with the radiologist just to make sure.  Megan has been experiencing some pain in that area while eating for the past six months, so Dr. Salvi is pretty certain it is unrelated to her cancer.  We are also still waiting on the bone marrow test results, which will not be in until Monday.  After that, we will meet with her oncology team to discuss her treatment.  We are fully aware that surgery and radiation are a given, but we are holding out hope that she does not have to go through chemotherapy again.  Chemo is such a brutal process, and her body is still recovering from the damage those drugs did the first time around.  To watch her go through that again would be agonizing.  However, if that’s what it takes to make sure she beats this monster, I know Megan will be up to the challenge.  Just last week I was talking with Megan about what might happen as a result of her relapse.  When discussing the prospects of chemotherapy, Megan said,

“I know I can do it again.  I just really don’t want to.”

Once the news of Megan’s relapse hit, it’s amazing how quickly her “Team Megan” supporters jumped right back into the fight with her.  I know she feels the love and support from all of you.  In fact, Deb and I have talked many times about how we truly believe the thoughts and prayers of everyone has really made a difference in Megan’s recovery efforts.  As I’ve said many times, beating cancer is just as much a mental as a physical battle.  If your mind is not right, cancer will win every time.

Speaking of the kindness of others, I wanted to give a special mention to my nephew, Jackson Bugg.  Jackson plays on the Moweaqua Central A&M High School basketball team.  On Tuesday night, their team sponsored a cancer fundraiser in Megan’s name for “Relay for Life.”  All of the players wore yellow warm-up t-shirts with “Team Megan” on the back.  Each player also brought a cake to be raffled off to the highest bidder.  When the incredible night was finished, they had raised over $6,000 in Megan’s name for “Relay for Life”.  When there is so much negativity and conflict in this world, leave it to our youth to focus on what is really important:  kindness and compassion.  Many thanks to Jackson and all of his teammates.  Here is a picture of the team, and a picture of Jackson with Grandpa and Grandma Bugg.  By the way, I here Grandpa Bugg paid quite a premium for Jackson’s cake 🙂

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As I talk to friends and colleagues about Megan’s test results, it seems strange to be celebrating the fact that your child has “only” one cancerous tumor.  Any parent would be devastated to know that their child has any form of cancer, but when you have seen your child go through a severe form of stage 4 cancer, your perspective sure changes.  If the bone marrow test comes back okay, and her doctors are certain that she only has the single tumor, that would be the best news we could possibly hope for.  We would consider ourselves truly blessed.

“Everything is relative in this world, where change alone endures.  Everything is better than some things and worse than others.  Which you choose to compare your experiences and situation with determines whether you will be happy and grateful or sad and jealous.”

Of course…when all else fails…bake some cupcakes!!!

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Or go visit some puppies…

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Or get a milkshake…

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It’s all in your state of mind, and I don’t know of anyone who could have handled the last two weeks with more grace and dignity than Megan.  She inspires me every single day.

Until next week…