Facing the Physical and Mental Challenges

It has now been 628 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  There are definitely two distinct aspects of cancer recovery.  The first is the physical recovery from cancer and its corresponding treatments, which are brutal in nature.  The physical toll that chemotherapy and radiation takes on the body is nearly immeasurable, and Megan is still recovering from certain ramifications of her treatment.  Although her foot drop is drastically improved, its impact on her gait is still noticeable.  Her body became so weak during treatment, so recovering her strength and stamina is an ongoing process some eight months following the conclusion of her treatments.  She has to go to her pediatric cardiologist in January, 2017 to see if her chemo-induced heart damage is starting to recover or not.  Her hair is still not growing in the spot where she had radiation near her left eye, but luckily, her hair is growing long enough to cover that up.  Megan is concerned about her left eye looking different than her right, which Dr. Salvi said is caused by the impact of radiation on that particular area of her body.  Her skin is still discolored on her left forearm from the radiation burns.  Although the physical toll of cancer treatment is rough, I have come to believe that it pales in comparison to the process of recovering emotionally from cancer.

Although Megan is doing very well, there are some aspects of the mental recovery that continue to challenge her on a daily basis.  On Tuesday, she had her monthly check-up at CDH with her oncologist.  Although she just had her clean scans a couple weeks ago, there is still that ever-present fear in the back of her mind that her doctor might just find a tumor during his physical exam.  Megan has gotten quite adept at telling her oncologists everything that could possibly be bothering her, because she knows the doctors will check those areas of her body extra close.  While undergoing treatment for cancer, Megan learned that she has to be her own best advocate, so even though it goes against her introverted nature, she no longer hesitates to ask her doctors anything and everything that is on her mind.  As a parent, it’s hard to explain the anxiety that you experience watching Dr. Salvi carefully check Megan for tumors.  Although it only takes a few minutes, it seems like an eternity as you wait for him to let you know that everything looks fine.  If I am feeling that anxious, I can’t even imagine what Megan goes through as she lays on the examination table.  Luckily, we once again got the all clear from Dr. Salvi, and with those words, I could see the relief in Megan’s eyes.  The mental stress of being a cancer survivor is very real.

Following her appointment at CDH, Megan then had to go to Marionjoy for an appointment with Dr. Pavone, who is treating her foot drop.  Dr. Pavone was very pleased with her progress, and said that if she continues on her current path, she should be finished with treatment in January, 2017!!!  Following her appointment with Dr. Pavone, she then stayed at Marionjoy to get fitted for new nightcasts.  It was a very long afternoon as we didn’t get back home until 6:00 p.m., which is when Deb and I immediately got in the car and headed to Kenzie’s volleyball match.  Megan was pretty exhausted and had some homework to complete, so we let her stay home with her friend Emma.

As I stated in last week’s post, Megan is becoming motivated to find an avenue to give back to other pediatric cancer patients and their families.  She has some really amazing ideas, and she is so anxious to get started on them.  On Wednesday night, she and I met with Shawn Hamilton and Chris Shirkey, who were the co-directors of the “Team Megan 5k”.  They have agreed to help her with her dream of raising funds to help other children who have been afflicted by this terrible disease.  We met with them for about an hour and a half to get the ball rolling.  As we concluded the meeting, I asked Megan if she had any more questions for us.  Her response was, “So…how long will it take to get this started?”  Hopefully, we can keep up the momentum and help her reach her philanthropic goals.  We are so appreciative of Shawn and Chris agreeing to assist Megan and our family with this important mission.  There will be much more to come about Megan’s vision in future posts.

Megan continues to adjust to life as a full-time student at Coal City High School.  She has received tremendous support from her counselor, Mrs. Dransfeldt, who Megan really enjoys confiding in.  She also continues to receive home tutoring from her favorite teacher, Ms. Erb, whenever she needs to get caught up from missing school.  When she missed most of the day on Tuesday to attend her doctor appointments, Ms. Erb came over Wednesday after school to help her get caught up.  Megan adores Ms. Erb and the two of them work so well together.  Megan’s confidence with her school work is still lacking, which is understandable given the fact that she was had not been a full time student for 20 straight months during and immediately following her treatment.  At times, she can get very frustrated that she is behind, but after working with Ms. Erb, she usually feels much better.  Each day at school gets a little better for her both academically and socially.  Once again, transitioning back to school is just another example of the mental challenges recovering from cancer carries with it.

On Friday, Kenzie took a college day to go visit the University of Iowa.  We had gone there once, but it was on a Saturday in the summer, which really didn’t give her a true feel for the campus.  This time, she signed up for a formal tour, which gave her a much better idea of what her life would be like as a Hawkeye.  She has already been accepted there, but she is still waiting on her acceptance status from the University of Wisconsin and the University of Minnesota before making her final decision.  Iowa was a beautiful campus, and she loves the amazing teaching hospital they have.  Given that she wants to become a pediatric oncologist, she was really intrigued by the brand new children’s hospital that will completed this November.  I have no idea where she will end up, but it has been fun to spend time with her as she visits various schools prior to making her decision.  Here is a picture of her showing off her VIP badge prior to the opening presentation on Friday.

Kenzie’s high school volleyball team continues to play very well as they are now 17-6 on the season.  Their losses have all been to much larger schools or private schools, and they are undefeated in conference play.  Since it is her senior year, her relatives have made a concerted effort to come and see her play as often as possible, which Kenzie really appreciates.  Considering that none of them have less than an hour drive to get here, we all are appreciative of their support.  At Thursday’s game, Uncle Todd, Gina, Cousin Danny and Grandpa and Grandma Bugg all made the trip.  Following the big win against Seneca, everyone hung around for pizza at our house.  It was so much fun!  Of course, in all the excitement, I forgot to get a picture of everyone.  However, I did manage to get this picture of most everyone gathering around the computer to watch a rival volleyball team play via live stream.

Here are a few other pictures from another tremendous week for Megan as she continues to remind cancer that when it picked her, it definitely had no idea who it was messing with!  Until next week…

Megan decided to whip up some breakfast scones this weekend.

The finished product…yummy!!!

Ophie gets some lovin’🙂

Belushi takes a break on Megan’s lap.

Giving Thanks and Giving Back

It has now been 621 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer. As readers of this blog know, Megan recently got the amazing news that her latest three month scans showed no sign of cancer.  That was such a relief to Megan and our family, and since that time she has been trying to live the “normal” life of a teenager in high school.  She went to the Homecoming dance last week, which she and her friends really enjoyed.  She is also getting more and more accustomed to being a full-time student at Coal City High School.  With each passing week, she seems to be catching on to the whole school thing as her anxiety levels continue to decrease.  She is also spending lots of evenings with friends as she just generally seems to be much more at ease with her life.  As I have said many times, when you are fighting cancer, you have to become an expert at living in the moment.  You can’t look back and ask why, and you can’t allow yourself to look too far ahead and wonder about all the “what ifs”.  Instead, you have to focus on making the most of each and every day you are given, and Megan seems to be getting better and better at that particular skill.  As Megan’s cancer remains in remission, she is now starting to focus more and more on how she can start to help other children who have become victims of this terrible disease.  She also continues to be very concerned about all of the other kids she has connected with who are still battling the beast.

Most everyone knows that one of the most important connections Megan made during her treatment was with Kasey Harvey, who lives in San Diego.  They connected via text and have remained close to this day.  Thankfully, Kasey is also in remission from ARMS, so now she and Megan deal with the same “scanxiety” that plagues most all cancer survivors.  The Harveys are a wonderful family and we are so fortunate to have met up with them a couple of times.  This past week, Megan received the amazing news that Kasey’s latest three month MRI results came back clean!!!  That was such a relief to Megan and we are so happy for Kasey and her family.  Megan and Kasey are two of the toughest and most determined teenage girls you will ever meet.  The “Survivor Sisters” can both relax for three more months knowing they have once again tamed this vicious disease.

While Megan was in the final stages of her treatment at CDH, we were able to connect with the family of Ellie Walters.  Megan thought little Ellie was about the cutest baby she had ever seen!  It seemed so unfair that Ellie was also fighting ARMS, so throughout her treatment, Megan was always very interested in keeping up with Ellie’s progress.  I am so happy to report that Ellie has completed all of her chemo treatments and her latest scans showed her cancer to be in remission!!!  The Walters family invited Megan to their celebration party, and Megan was very eager to go.  We can’t wait to see little Ellie and celebrate with her family.  Congratulations Ellie!!! #elliestrong

I long for the day that this evil disease no longer afflicts our children, because it just seems so unjust.  However, having experienced many pediatric cancer patients, I can tell you that all of these kids are absolutely incredible.  They are all experiencing a living hell, and yet they do so with a smile on their face and a warm heart.  I continue to believe that these kids are so much tougher and more resilient that we adults.  I know I could have never done what Megan accomplished over her 54 weeks of treatment.  However, to her, it was just what she had to do to get better.  She never doubted herself and she never lost faith in her ability to beat down cancer.  Kids are really incredible…but I still wish cancer would just leave them alone!!!

Over the past few weeks, Megan has become very interested in trying to find a way to help other kids who are fighting cancer.  Recently, she was asked to attend the “Cure It” 5k walk in Gardner, IL, which is being held to raise money for childhood cancer research.  The walk takes place at Gardner-South Wilmington High School on Sunday, October 16 at 10:00 a.m.  If you are interested in participating, please call Jen Arrambide at 815-237-2176 or e-mail her at jarrambide@gswhs73.org.  In the past, Megan might have been too shy to participate in such an event, but now she is anxious to go and show her support.  She will be cutting the yellow ribbon to start the race and she is determined to walk the entire 5k on her own!  It should be a great morning in support of a very worthy cause.

This week, Megan will also be meeting with Shawn Hamilton and Chris Shirkey, who were the co-directors of the “Team Megan 5k” that was held in 2015.  She wants to meet with them because she has some ideas about things she wants to try and do to raise money for childhood cancer patients.  She also wants to find a way to foster communication between teenage cancer patients across the country because she knows those contacts were so important to her successful recovery.  I am anxious to hear what ideas she has to share with Shawn and Chris on Wednesday night🙂

Overall, it’s been another great week for Megan.  She is going to school; spending time with friends; attending Kenzi’s volleyball games (by the way…the Lady Coalers are 13-3 so far this year!!!); and just generally living the life of a high school student.  Here are a couple of pictures of the week that was…

Kenzie made some chocolate chip cookies for her boyfriend, so Megan helped her finish the project. The cookies were really good!

Megan and her friend Katelyn working on homework for their Intro to Business class.

Of course…no post is complete without a picture of Megan and one of her pets. This time, it was Belushi that made the cut.

Until next week…

 

Homecoming Week

It has now been 614 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  After receiving the incredible news last week that Megan’s latest scans were clean, this past week was much less stressful for Megan and our family.  In fact, this week seemed almost “normal” as the girls went to school, came home and did their homework, and we went to Kenzi’s volleyball games.  Even though the week seemed normal, it was Homecoming week at Coal City High School, so the weekend was pretty exciting around our house.

Last year, Megan was in treatment during her freshman Homecoming, which meant she could not participate.  However, now that she is back in school full-time, she and some of her friends planned to attend the dance together.  They all went shopping together a few weeks ago to get their dresses, and Saturday was finally the big day.  I found it extremely emotional seeing her able to go to the Homecoming dance with her friends just like a normal teenage girl.  It was also Kenzie’s senior Homecoming, which only added to the emotion of the day.  Instead of writing the details, I thought it would be easier to show you all of the excitement in pictures.

Megan and her friend Katelyn took this picture right after the Homecoming pep assembly at the high school on Friday afternoon.

Kenzie at the Homecoming football game with all of her senior volleyball friends. Kenzie is wearing #83.

Saturday morning there was a sophomore volleyball tournament at CCHS. Megan’s former volleyball teammates paid tribute to Childhood Cancer Awareness month by getting Megan this yellow cupcake heart. Thanks to Danette Wren for organizing this for Megan. She was touched and excited to be with her old teammates.

The girls getting ready to head to the dance.  I know I may be a little biased, but I thought they looked gorgeous!!!

Makenna Emerson stopped over to see the girls in their dresses. It was so good to see her.

Kenzie and and her date for the dance, Nick Hayden.

The girls with Megan’s good friend Emma.

This is the group of friends Megan attended the dance with…Jada, Emma, Megan and Jessica.

Both girls had a great time at the dance.  While they were there, Megan got pictures with two of her favorite teachers…Miss Erb and Mr. Micetich.  Miss Erb has tutored Megan since February to help get her caught up at school.  Megan absolutely adores her!  Mr. Micetich tutored Megan in Algebra I this summer.  Megan first started working with Mr. Micetich when she participated in the 8th grade musical production of “High School Musical 2” and they have been close ever since.  We are so appreciative to both of them for everything they have done for Megan.

Megan and Miss Erb

Megan with Mr. Micetich

After the dance, Kenzie went with Nick and a bunch of her friends for a late dinner at Buffalo Wild Wings.  Emma’ parents took Megan and Emma to Red Lobster for their late meal.  Both girls got home at midnight and collapsed into bed.  It was an amazing day!

Today, Kenzie slept away most of the day as she recovered from volleyball matches and the excitement of Homecoming week.  Between her tough academic schedule and volleyball, she needed the break!  Megan slept in, but when she woke up, she had the itch to bake.  I really like to cook, but one thing I have never found success with is blueberry pie.  It is the only pie I make that I just cannot get to set correctly.  It always tastes good, but it seems that no matter what I do it turns out runny.  Megan was determined to try and one up me by making one herself.  She and Deb went grocery shopping this morning and returned with the fresh blueberries Megan needed.  After a lot of time and effort, she got the pie into the oven and baked, but the jury was still out.  After supper, she tentatively cut into it and took out the first piece, and believe it or not, she did it!  She made the blueberry pie that her dad could not pull off.  It was amazing!  Here are a couple pictures of her preparing her pie for the oven.

It was a great week at the Bugg house as more and more “normal” keeps finding its way into our lives.  Trust me…it is a welcome addition!!!  Until next week…

 

 

 

CLEAN SCANS!!!

It’s been 607 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  Although her cancer has officially been in remission since January 25, 2016, learning to live with the anxiety of being a cancer survivor has been no picnic for Megan.  With every ache or pain, the anxiety alarms go off as she is worried it is a sign the dreaded beast has returned.  Every time she feels a bump anywhere on her body, we can see the fear in her eyes.  Allergies that cause discomfort in her nose or throat bring with them the concern that the pain just might be caused by a return of cancer.  I could not even begin to imagine the constant fear that Megan lives with on a daily basis.  Considering all she is going through, it is absolutely remarkable how well she has transitioned back to school and life as a “normal” teenage girl.  Learning to live with the daily anxiety of being a cancer survivor is tough enough as it is, but nothing compares to the fear that goes through her mind during her three month scans.  That’s what Megan was faced with this past week, but as usual, she once again showed cancer that it was no match for her determination and mental toughness.

On Monday, Dr. Salvi scheduled Megan for a chest CT scan and a brain MRI.  Megan was very concerned about the MRI because her claustrophobia makes staying in that tube very difficult…especially considering the brain MRI requires her to wear a helmet to immobilize her head.  When Megan was first undergoing tests for cancer in December, 2014, she had to go through three hours straight of MRI testing and it was absolutely awful.  Ever since then, she has tried her best to avoid going back in that tube.  However, Dr. Salvi said that she was at the point of her recovery where he really needed a brain MRI.  Dr. Salvi offered to prescribe Valium to get her through it, but Megan refused.  She reasoned that she was going to have to deal with MRI’s for the rest of her life, so she wanted to prove she could get through it.  She really is an amazing kid.

Megan went to school on Monday morning, but she had to be dismissed at 10:45 a.m. to get to CDH in time for her scans.  I know she was a nervous wreck, but she tried her best to be positive during the ride there.  When we arrived, she had to spend the first hour drinking the nasty contrast liquid that is required for the CT scan.  After that, she went in for the chest CT scan and had no issues.  Then she only had about five minutes before the MRI was scheduled to start.  Megan was really nervous about the MRI, but she had mentally prepared herself to get through the 30 minute scan.  However, when the MRI technician came to visit her, she said the doctor had also ordered an MRI of her orbits, which increased the time to 90 minutes.  Megan asked if she would get a break in between the tests, but the technician said that would not be possible because her head had to be in the exact same position for both tests.  Megan is the bravest teenage girl I have ever met, but hearing that she had to be in that MRI tube with her head bolted down for 90 minutes straight was too much for her.  Megan was disappointed, but we ended up rescheduling the MRI for Thursday morning when she would undergo the scan under anesthesia.  Although it was the only option, Megan was still upset that she would have to wait longer to get the scan results back.

We were thrilled when Dr. Hayani called to let us know that the chest CT was clear!!!  However, Megan knew she was only 50% done because the MRI was still out there.  Knowing she still had an upcoming MRI scan made Wednesday and Thursday very tough days for Megan.  She still went to school and did her best to concentrate, but it was obvious she was not herself.  There were many a tears shed at night as her mind would wander to the “what ifs” with the MRI.  More than once, she would lament that she didn’t know if she could fight this battle all over again. I just can’t imagine what she was going through during those few long days, and I find it amazing that she was still able to go to school and function each day.

On Thursday morning, we left the house at 4:15 a.m. because we had to check in to CDH at 5:30 a.m.  Megan hates going under anesthesia because she always gets sick when she wakes up.  However, she was in pretty good spirits as I think she was just ready to get it over with.  One of the fears Megan had was having her port accessed by a nurse who didn’t have experience accessing such devices.  It’s very painful for her if the nurse can’t access the port on the first try.  You should have seen the look of relief on Megan’s face when Nurse Jenny walked into her room to access her port.  Neither of us could believe that Jenny took the time to come to work early just to access Megan’s port.  There is a reason Megan loves Nurse Jenny…as does the rest of our family.  She is the best!!!

Megan went under anesthesia at 7:30 a.m. and by 9:30 a.m. I was called back to be with her as she woke up.  She looked fantastic!  The anesthesiologist provided her with medication to keep her from getting sick and it worked like a charm.  By 10:45 a.m. we were headed for home and Megan was asking if she could stop at Portillo’s for a chicken sandwich!  I know she was very relieved the MRI was over, but her euphoria was short-lived as very soon she started to stress over the results.

Megan slept most of the day on Thursday, but Friday morning she was getting dressed and ready for school.  Although she wanted to get to school and stay in the routine, she told me she couldn’t concentrate on anything but her MRI results.  She was really hoping the results would come back sometime Friday morning so she would know where she stood prior to the weekend.  I will admit, Friday morning was not only difficult for Megan, but it was agonizing for the rest of our family.  Deb, Megan and Kenzie were texting me over and over to find out if I had heard anything.  Finally, at about 11:45 a.m., I received the call from Dr. Salvi.

Although I had been waiting all morning for that phone call, as my phone rang, I was so scared to answer it.  So many thoughts went through my head in such a short period of time, but after a few rings, I took a deep breath and answered my phone.  To be honest, I don’t remember anything Dr. Salvi said after “There is no evidence of disease in the MRI.”  I know he told me some other things, but I don’t really remember.  After hearing that incredible news, I immediately drove over to the high school because I knew Megan was at lunch.  She was having lunch with Kenzie, and a couple other friends when I told her the news.  You could see the relief as soon as she knew she was okay.  Here is a picture of everyone right after the amazing news.

After finding out that she had once again kept cancer at bay, Megan set about enjoying the rest of the holiday weekend.  On Saturday, we all drove to Willowbrook to watch Kenzie play in a volleyball tournament.  As always, Kenzie played great as the Lady Coalers took the championship of the consolation bracket in a very difficult tournament.  On Sunday, Uncle Todd, Gina and Cousin Danny came for a cookout.  Megan and Kenzie decided to make some white chocolate raspberry-filled cupcakes, which were amazing!  Here they are working on their creations, and also a picture of the final product.  They made a great team🙂

We had a great time with Uncle Todd and everyone.  Here are a couple pictures of our visit.

Megan, Uncle Todd and Cousin Danny

Megan, Kenzie, Deb and Gina

Megan has already beat down cancer, but every three months, she is faced with the demons again as she can never be sure until the results of her scans come in.  At least now she can enjoy three months of peace until she has to do it all over again.  Such are the cards she has been dealt, but I have no doubt she will continue to find a way to turn her hand into a winner.  Thanks to everyone on “Team Megan” for your amazing support for her this week.  We are thankful to each and every one of you.

 

Preparing for Scanxiety

Believe it or not, it has now been 600 days since Megan was first diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  It’s amazing how much progress she has made since her treatment officially ended on January 25, 2016.  She just completed her first full week of school as a full-time student at Coal City High School.  Since she had not been a full-time student since December, 2014, going to school all day has been an adjustment for her, but she has handled it very well.  She comes home from school pretty tired, but her friends and teachers have really helped with her transition.  Along with going to school, Megan is continuing to balance the other aspects of her recovery, which includes not only various medical issues, but also learning to live with the ever-present anxiety that comes with being a cancer survivor.

On Monday, Megan had an appointment at the Marionjoy Rehabilitation Hospital, which is where she is being treated for her Vincristine-induced foot drop.  At the conclusion of her chemo treatment in January, 2016, Dr. Pavone measured the flexibility of Megan’s right foot at -30 degrees and her left at -25 degrees.  The lack of flexibility in her calves caused her to walk on her toes, which made walking both painful and unsteady.  On Monday, after being fitted for progressive night casts for the past few months, Megan’s right foot measured at 0 degrees and her left at +4!!! Getting back to a plus number was huge for Megan as the goal of her treatment is to get both feet to a +10 degrees.  The added flexibility in her feet has made walking much easier.  She is also able to stand in one place without constantly shifting her feet or needing something to hang on to, which has been a huge relief to her.  During Megan’s treatment, one of my good friends told Megan that slow and steady wins the race.  That has definitely been the case as she has worked to tackle her foot drop issue.  By the way, the people at Marionjoy have been fantastic to work with.

Since Megan missed school for half a day on Monday for her appointment at Marionjoy, Ms. Erb came over after school on Tuesday to help Megan get caught up with what she missed.  Whenever Ms. Erb is here, there is always lots of laughter coming from the office where they work.  Megan loves Ms. Erb, and we are so fortunate to have her working with Megan again this year.

Tuesday also marked the season opener for Kenzie’s volleyball season.  The Lady Coalers started their season with a big three game victory over a tough Prairie Central High School team.  As always, we were very proud of how hard Kenzie and her teammates played.  It’s hard to believe it is her senior year.  Here is a picture of Kenzie and Megan after the victory.

Thursday was a big day because Grandpa and Grandma Bugg decided to drive up to watch Kenzie’s volleyball match vs. Morris High School.  The girls always love to see their grandparents, so we were all anxious to get home after school because they planned to get to our house at about 3:30 p.m.  We had a great visit, and they just happened to see an amazing volleyball match as the Lady Coalers came from behind in two straight games to defeat Morris.  Kenzie had two huge kills in the second game, which helped to ice the victory.  Grandpa and Grandma stayed overnight with us and took Megan to school the next morning before heading for home.  Here are a couple pictures following the victory that brought the Lady Coalers to 2-0 on the season.

One of the most exciting aspects of Megan’s recovery is seeing her enjoy many of the “normal” teenage activities that most people might take for granted.  It has been over a year since Megan was able to attend one of our high school football games.  That drought ended on Friday night as Megan was excited to go to our season-opening football game vs. Reed-Custer High School on Friday night.  It was so much fun seeing her in her Coaler gear attending the game just like a “normal” teenage girl.  The Coalers even picked up a victory, which made the night even sweeter.  Here are a couple pictures of Megan from the game on Friday night.

Megan with her good friend Katelynn.

Emma, Megan and Ava having a great time.

Anyone who follows this blog knows that throughout “Megan’s Journey”, our neighbor, Makenna Emerson, has been by Megan’s side during and after treatment.  Makenna graduated from high school last spring and although we are all very excited to see the amazing things she accomplishes in life, we knew we were really going to miss her when she went to college.  All summer, Makenna has spent a lot of time with Megan and our family, but on Friday, it was time for her to move on with the next phase of her life and head to college.  Luckily, she is attending Olivet Nazarene University, which is only about 40 minutes from our house.  Needless to say, we didn’t wait long to go see her as our family packed up today and headed to meet her for lunch at Monical’s Pizza.  It was so good to see her!  We all visited her dorm room, which gave Kenzie a little taste of what college life will be like.  Although Makenna won’t be right next door to us anymore, through the magic of social media, I’m sure the girls will all keep in touch.  Here is a picture from lunch today.

After we got home from visiting Makenna, Megan went grocery shopping with me and then helped me cook supper.  Then she settled in for the rest of the night because tomorrow is going to be a very big day for her.  At 12:30 p.m. on Monday, Megan will undergo her next round of three month scans to make sure her cancer is still in remission.  It seems like only yesterday that we endured the anxiety that comes with these dreaded scans, but it’s already been three months.  At 12:30 p.m., Megan will have a brain MRI and then later that afternoon, she will have a full body CT scan.  Megan’s claustrophobia causes the brain MRI to be really tough for her.  In the past, her oncologist has given her a dose of Valium to help calm her down during the scan, but this time, Megan told him she didn’t want it.  She knows she will have to deal with these brain MRI’s for the rest of her life, so she wants to prove she can get through it without medication.  Sometimes her courage amazes me.

Megan should be finished with her scans at about 6:00 p.m., and by that time, she will be ready to eat.  She cannot eat anything after 8:30 a.m., so I’m sure she will be starving by 6:00 p.m.  Megan wants to make sure we are home by 7:00 p.m. because her favorite show, “The Fosters” is on🙂

The scans themselves are difficult for Megan, but it’s the time between the scans and the results that are the most difficult for her…and us.  Hopefully, we get results sometime on Wednesday morning, which means that Tuesday will be a very long day.  Some cancer survivors call the time between scans and results “scanxiety”…I just call it torture!  However, all indications are that Megan is still doing well, so we are going to continue to think positive and continue making the most of each and every day.  Throughout Megan’s Journey we have learned that every day is a gift to be treasured.

“If you live in fear of the future because of what happened in your past, you will end up losing what you have in the present.”

Megan has already proven she is far too tough for cancer.  When cancer picked Megan, it had no idea who it was messing with!!!

Don’t worry…I will post results before next week’s post.  We need all of “Team Megan” to send positive thoughts at 12:30 p.m. tomorrow.  Until next week…

 

Back to School

It has now been 593 days since Megan was diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  Megan was initially diagnosed on December 30, 2014.  At that time, she had just finished the first semester of her 8th grade year, but very quickly and cruelly, school became the least of her concerns.  Thanks to her 8th grade homebound tutor, Mrs. Larson, Megan was able to complete her 8th grade year.  During what should have been her freshman year at Coal City High School, Megan was still in the midst of her intense chemotherapy treatments, so with the risk of infection, attendance at school was still not possible.  On January 25, 2016, following a long hard battle, Megan’s cancer was officially declared in remission.  After that, she set about earning as many credits as possible with plans of starting her sophomore year as a full-time student.  Starting in mid-February, 2016, Megan went back to school part-time and earned credits in English I and Health.  Thanks to the work she was able to do with her homebound tutor, Miss Erb, Megan was able to earn a full year’s credit in English.  Over the summer, Megan attended summer school to earn credit in Drivers Education.  She also worked with Mr. Micetich over the summer to earn credit in Algebra I.  Megan worked so hard to reach her goal of attending school at the start of her sophomore year, so to see it finally come to fruition was definitely one of those beautiful moments.

School started on Wednesday, so Tuesday night, Megan was full of both anxiety and anticipation.  Although she was starting her sophomore year, she had never been a full-time students at the high school, so it was really like being a freshman.  Therefore, she had a lot of difficulty getting to sleep on Tuesday night.  However, on Wednesday morning, she had no trouble getting out of bed as soon as her alarm went off.  This year was a double whammy for me because not only was Megan finally going back to school, but Kenzi was starting her senior year.  When I came home to check on them, Kenzie quickly exclaimed, “Hey dad…it’s my last first day.”  WOW…I can’t believe how fast the time has flown by!

As we have done every year since we moved into our home on Trotter Drive, we had to get our customary first day of school pictures with the Emerson girls.  Madison was starting her freshman year, and even though Makenna graduated last spring, we still made her come over and pose for pictures🙂

The first day of school!

Our senior in high school.

All four “sisters” on the first day of school.

Megan’s friend Emma stopped over to go to school with Megan.

Kenzie and Megan in the car and ready to head to school.

Watching Megan head off to her first day as a full-time student at Coal City High School was a very emotional moment.  As I watched she and Kenzie pull out of the driveway, there were so many memories that came flooding back.  I vividly remembered that Christmas morning in 2014, which was the very first time I saw the tumor on Megan’s left forearm.  I remembered taking her to the pediatrician and being breathless when I heard the word “cancer” for the first time.  I remembered the look on Megan’s face as we were driving to Central DuPage Hospital for the first time, knowing I was powerless to shield her from what the doctor was going to tell her.  I remembered holding her hair back the very first time she threw up from her very first chemo treatment.  I remembered watching her struggle to deal with having her head bolted down to the table during proton radiation treatments.  I remembered when she was rushed to intensive care after suffering a severe sepsis while in the hospital.  All of the memories were so vivid as I watched Megan leave the driveway on her way to school.  However, the one memory that still stands out the most is how Megan reacted as soon as she was told her official diagnosis of stage 4 cancer.  As soon as Dr. Hayani left the room, Megan told her mother and I,

“Please don’t say I’m sorry.  When you say that, it sound like you don’t think I will get better, and I’m going to get better.”

From that moment, Megan changed the game.  She had already determined she was not going to be a victim to cancer, and she wanted to make sure we knew that as well.  Watching her go back to school was validation of her steely determination, focus and courage.  As I told her just before she left, she has proven there is nothing she cannot overcome.

After the first two days of school, Megan was pretty exhausted.  By Friday night, she was in bed by about 9:30 p.m., which is unusual for her on a Friday night.  However, she bounced back on Saturday as she had made plans to have three of her friends sleep over and go shopping with her for Homecoming dresses.  Yes…Megan is going to the Homecoming dance with her friends this year!!!

Saturday night was pretty busy around our house as following the “Meet the Coalers” volleyball night, Kenzie had all of six of her fellow senior volleyball players sleep over.  Megan also had her three friends sleep over, so we had a full house, but it was lots of fun.  At Kenzie’s request, Megan and Deb whipped up a batch of Oreo cupcakes for the “Meet the Coalers” event.

At about 10:00 a.m., Deb took Megan and her friends, along with Kenzie and Makenna Emerson, to the Orland Park Mall to go Homecoming shopping.  Both Megan and Kenzie picked out gorgeous dresses, but you will have to wait three weeks for Homecoming before you can see pictures :)  Thinking about Megan attending the Homecoming dance with her friends always brings a smile to my face.  Here is a picture of all the girls eating lunch in between shopping.

From left: Makenna, Megan, Emma, Jada, Jessica and Kenzie

The pace will continue to pick up this week as Megan will have her stamina tested with a full week of school.  Kenzie also opens her volleyball season with two home games during the week and a tournament on Saturday.  Here we go!🙂

Another challenge Megan will have to overcome this year is missing school periodically due to her ongoing medical appointments.  On Monday, she has an appointment at the Marionjoy Rehabilitation Hospital to get fitted for new casts, which will cause her to miss her first three classes.  Thankfully, Miss Erb has agreed to tutor Megan again this year, so she is coming after school on Monday to help Megan get caught up with what she missed.  Also, on August 29, Megan has her next round of three month scans, which includes a brain MRI and a CT scan.  However, we won’t worry about that until the time comes.  Being a cancer survivor is akin to the process of fighting cancer in that you have to learn to take things one day at a time.  You can’t worry about tomorrow until tomorrow gets here.  Instead, you have stay focused on making the most of today.  Over the past 20 months, Megan has become an expert at living in the moment.

Of course, a week as great as this one wouldn’t be complete without a picture of Megan and Ophie :)  Until next week…

 

 

Ready to Clear Another Hurdle

586 days ago, Megan was diagnosed with stage 4 aveolar rhabdomyosarcoma cancer.  After fighting so hard for so long, it is hard to believe that this week she will be going back to school full time.  Given her initial diagnosis and the intensity of her treatment protocol, the fact that she will walk through the doors of Coal City High School on Wednesday as a full time student is nothing short of incredible.  Throughout her journey, Megan has continually defied all of the odds as she has taken every blow cancer threw at her and responded with the heart of a warrior.  Starting back to school will mark another hurdle cleared on Megan’s journey towards living the life of a normal teenage girl.  We are so proud of her!!!

Megan is obviously a little anxious about school starting, which is to be expected considering that the last time she was a full time student was the last day of school prior to Christmas break in 2014.  To help with her transition back to school, she has been to the high school a couple times with her friends so she knows her way to her classes.  She also has a couple friends in most every class, which she is relieved to know.  Although I know she will be nervous on that first day, I don’t think it will take long before she is in the swing of being a high school student.

School doesn’t start until Wednesday, which means this past week was another opportunity to capture more beautiful moments this summer.  Kenzie has been busily filling out college applications, as her goal was to get them all completed before school starts.  Megan’s illness has motivated her to pursue a career in medicine, so not only has she been investigating universities, but she has also been contacting some of Megan’s doctors to pursue shadowing opportunities with them.  About a week ago, she was able to watch a knee surgery performed by Dr. Rezin in Morris.  She thought it was amazing!  Here is a picture she took after she scrubbed in🙂

When Megan was first diagnosed, she had to have her port surgically implanted as well as have a biopsy taken from the primary tumor on her left forearm.  Dr. Loretto Glynn performed that surgery, and Deb and I were both so touched by her bedside manner.  On Thursday, Kenzie was able to go visit Dr. Glynn to talk with her about pursuing a career in medicine.  When Megan heard that Kenzie was going to Central DuPage Hospital for the meeting, she immediately wanted to go to visit some of the nurses who took such good care of her during her treatment.  Before they went to the hospital, Megan whipped up a batch of cupcakes to take to the nurses.  While Kenzie was visiting with Dr. Glynn, Megan went up to the pediatric floor and was thrilled when she saw many of her favorite nurses.  Nurse Mariel was working and she was the first nurse to take care of Megan during her initial in-patient stay.  She has always been very special to Megan, and they were able to share a big hug when they saw each other.  Also, Nurse Sue was working on the floor as well.  She always had a way of making Megan laugh during the toughest of times.  Here is a picture of Megan with both nurses.

After visiting everyone on the pediatric floor, she went down to the pediatric intensive care unit where more of her former nurses were working.  She got to see Nurse Stacey and Nurse Karen who were also two of her favorites.  She also saw Kristen, who Megan absolutely adored.  There were so many times during Megan’s treatment when Kristen would come and spend lots of time with her just to help take her mind off of the pain.  She taught Megan to crochet, she would bring her games, talk about her favorite restaurants, and just about anything else to help Megan through they tough times.  Unfortunately, Megan was so excited to see Kristen that we forgot to get a picture.  However, we did get one with Nurse Stacy and Nurse Karen.  It was such an awesome visit with some amazing health care professionals.

Nurse Stacey is showing off one of Megan’s awesome cupcakes.

On Saturday, Aunt Amy was in Chicago for the weekend, so she came down for a quick visit.  We hung out in the pool most of the afternoon and then had a cookout for supper.  We had a great time and it was so good to see her.  Here is a picture of the girls with their Aunt Amy.

Saturday night, Deb, Kenzie and Makenna Emerson went to watch Jack Micetich perform in the musical production of “Dogfight”.  Here they are just before they headed out the door.

Overall, it was another great week for Megan as she thoroughly enjoyed her final full week of summer vacation before school starts this week.  Although Megan and our family created many more beautiful moments this past week, there was a very sad event that really impacted us.  Throughout “Megan’s Journey”, Megan and our family have connected with other families whose children are also fighting the evil beast that is cancer.  All of us are part of an exclusive club that no one really wants to belong to.  However, our shared experience brings us together as we try to support one another through this incredibly difficult battle.  One such family who I connected with was the Pironi family.  On January 22, 2015, 16-year-old Sara Pironi was diagnosed with the same cancer as Megan.  Her mother and I emailed back and forth on various occasions as our daughters were going through similar treatments and the resulting nasty side effects.  After a long and courageous fight, we were devastated to hear that Sara tragically passed away on August 10 at the tender age of 18.  In the wake of Sara’s passing, I am reminded of the words of the late ESPN anchor, Stuart Scott, who said,

“When you die, it does not mean you lose to cancer.  You beat cancer by how you live, why you live, and the manner in which you live.”

If you believe the words of Stuart Scott like I do, then there is no doubt that Sara won her battle against cancer.  #sarastrong will forever be remembered by everyone on #teammegan.  Sara’s mom said that Sara would often ask how Megan was doing, so I know that Sara’s love and strength will forever shine down on Megan.  Our family sends our heartfelt condolences to the Pironi family.

Until next week…