A Week Full of Wins

This past week was a huge one for Megan.  She successfully navigated her “scanxiety” last weekend in preparation for her CT and MRI scans on Monday and Tuesday.  Megan had not had any scans since her last chemotherapy treatment in November, 2019.  During her gall bladder issue on New Year’s, she did receive an abdomen CT while she was hospitalized in Los Angeles, which was clear.  However, she has not had any further scans on her chest or brain, so obviously, she was concerned.  Although she has been feeling good and displaying no symptoms of cancer, that fear is always present.  Unfortunately, it’s a reality that all childhood cancer survivors deal with every three months.  I can’t wait for the day that our country finally prioritizes childhood cancer and commits to saving 1800 young lives per year, but until then, “scanxiety” is the harsh reality for all of these brave warriors.

On Monday morning, we had to be at the CDH clinic at 8:00 a.m. to get Megan’s port accessed.  She has had the same port in her chest since she was first diagnosed as a 13 year old, and it is what her medical team uses to get blood samples and to administer medications like chemotherapy.  When she gets a chest CT, they use the port to inject the contrast.  The problem is that since Megan is now older, her chest port is a little harder to access…especially if a nurse is not used to accessing such ports.  Unfortunately, when someone has trouble accessing her port, it is quite painful.  Luckily, the awesome nurses at the CDH clinic are experts at accessing ports because they do it all day long, and because they are so kind, they always offer to have Megan stop by early prior to her scans so they can access her port without worry.  As soon as she was accessed, we walked to Diagnostic Imaging to get her chest CT.  It only took about 15 minutes for her to complete her scan, and then it was back to the CDH clinic for a physical exam from her oncologist.  As usual, Megan had lots of questions, and as usual, her oncologist took all the time she needed to get her questions answered.  Thankfully, he gave her a good report and all that was left was waiting for the results.  Of course, before we left, Deb and Megan got in a quick game of ping pong 🙂

While Megan was at the clinic, she brought the care bags that she made for all of the female teenage cancer patients.  Megan is so appreciative of everyone who donated so she could complete these bags for all of these brave cancer patients.  As Megan so painfully knows, sometimes receiving a gift like this can brighten the darkest of days.  Here is a picture of Megan after she donated the bags to Allie, who is the Child Life Specialist at the clinic.

At about 2:00 p.m., Dr. Kar called to let us know that Megan’s chest CT showed no changes from her previous CT, which was the best news ever!!!  Megan was so relieved because the chest CT is always the one she is worried about as most of her relapse tumors have showed up through that scan.  She was feeling much better, but she knew she still had the brain MRI awaiting her on Tuesday morning.

On Tuesday, we woke Megan up at 4:00 a.m. because we had to be back to CDH to check in for her MRI at 5:30 a.m.  Since Megan still suffers from claustrophobia when getting a brain MRI, they still put her under anesthesia for this procedure.  I guess it’s actually unfortunate that Megan has been through this so many times, but on the positive side, when she shows up at the West Surgery center, everyone knows her.  Every person from the receptionist, to the nurses, and especially the anesthesiologist knows who she is and greets her with an enthusiastic hello.  Megan has actually become quite close with her anesthesiologist, Dr. DeGraca, who is one of the nicest and most genuine people I have ever met.  At her last three month MRI, he wore Megan’s Ivory Ella childhood cancer shirt that she designed.  When Megan was hospitalized in LA, we texted him regarding her anesthesia and he immediately responded every time.  This time, Megan made him homemade frosted brownies as a thank you, and they sat and talked for a good 15 minutes prior to the procedure.  We are so fortunate that everyone on Megan’s CDH medical team is so fantastic.

Megan went back for her MRI at bout 7:15 a.m. and as you can see, she was still doing her word search puzzles to keep her mind off the MRI results.

At about 9:45 a.m. I got called back to see her and although she was tired, she still gave me that infectious smile to let me know she was okay before falling back to sleep.  We left the hospital at about 11:30 a.m. and headed home to wait for results.  Since her brain MRI was so early in the morning, we were holding out hope that results would come prior to the end of the day.  It’s really tough for any of us to get a good night’s sleep when we are awaiting Megan’s scan results.  Thankfully, at about 4:00 p.m., Nurse Jenny called to let us know the doctors had reviewed her MRI and it was all clear!!!  We received those four magic words that all cancer patients crave…NO EVIDENCE OF DISEASE!!!

When I told Megan the good news, you could see the relief immediately come over her.  Then she said she was tired and was going to sleep.  We didn’t hear from her again for three hours!  She was obviously mentally exhausted.

Following the good news we received on Monday and Tuesday, Megan was a different person for the rest of the week.  She was scheduling trips to Starbucks with her friends; went out for supper with her friend after working at the dance studio; drove to Joliet to meet her friend from Naperville; and on Sunday, she wanted to take advantage of the weather and be outside.  She decided she wanted to go to the Morton Arboretum in Lisle.  We drive by it every time we travel to the hospital, but we have never visited.  Although there were obviously no trees in bloom, it was still beautiful to walk outside around the water and search for the trolls.  One of the most telling signs that Megan is getting better is that she walked about a mile and half today, and although she was really tired, she was proud that she did it.  To think that just a month and a half ago, she couldn’t walk any distance at all without her wheelchair.  Considering how beat up her body has been over the past five years, the progress she is making is astounding.  Of course, her determination to get better has a lot to do with that.

This was a very good week for Megan and her recovery.  We could never thank everyone on “Team Megan” enough for your kind thoughts and prayers for her.  I know for a fact that Megan feels your support and it means the world to her.  We know the battle is not over, but this round definitely goes to Megan.  Sooner or later, cancer needs to throw in the towel because this warrior is never going to quit.

“Don’t give up.  Don’t ever give up.”

Jim Valvano

 

It’s Time for Scans…Again

As I have reported in the previous two blog posts, Megan has been feeling better than she has in the past five years.  As her last chemo treatment gets further behind her, she continues to get stronger and stronger with each passing day.  She has even started to talk about her future, which while she was in the midst of battle, she could never get her mind to think that far ahead.  Today, she even took advantage of the sunshine and took her dog, Sparky, for a walk around the block.  To some, that may not seem like much of an accomplishment, but considering that just a couple months ago she was winded walking to the bathroom, it was a very big deal to her.  Megan has been fighting so hard to finally break free of childhood cancer’s evil grasp, but every time she gets so close, there is always a vivid reminder to let her know the disease is still hanging around.  Believe it or not, it is once again time for Megan’s three month scans, which means her “scanxiety” is ratcheting into high gear…and unless you have been there yourself, none of us can ever truly understand how she feels.

On Monday morning, Megan has to report to CDH at 8:00 a.m. for her chest CT, which will be followed up on Tuesday morning with a brain MRI under anesthesia.  Hopefully, Megan’s CT results come back by the end of the day on Monday, but we will not get her MRI results until Wednesday.  Although Megan has been through this process over and over during the past five years, it never really gets any easier.  When you have experienced the horrors of chemotherapy and its resulting devastating side effects, just the thought of going through that again can send anxiety levels through the roof.  Megan has actually gotten more adept at handling her “scanxiety”, but as any cancer survivor can tell you, it never really goes away.  Megan has learned certain tricks that help her through the day prior to her scans, such as sleeping much later than usual.  Although as her strength has improved Megan has been getting up earlier and earlier, today she forced herself to sleep until almost noon.  Her reasoning is that when she is sleeping, she doesn’t have to think about her scans.  She also tries to keep her mind occupied throughout the day.  For example, today she cleaned out her closet and cleaned her bathroom.  She also has been completing multiple word search puzzles out of a book she keeps by the couch.

As I type this post, she is playing board games at the kitchen table with her mom, and later tonight, we plan on getting out of the house for supper.  If she does have downtime, she will review her social media pages, or if she is really struggling, her pets always come to the rescue.

It’s sad that not only Megan, but all of these brave childhood cancer fighters have to go through this agonizing phenomenon known as “scanxiety”, but until our country decides to make these kids a priority, this will sadly happen over and over and over again.  Speaking of making childhood cancer a priority, yesterday was “International Childhood Cancer Day”.  Of course, it didn’t get much attention in our country or with our politicians, because it never does.  Unfortunately, society tends to have so many other priorities, and I understand that there are a lot of bad things out there that need to be addressed.  However, I will never comprehend how childhood cancer does not advance to at least near the top of that list…especially considering the facts.

• The average age of a childhood cancer diagnosis is 6 years of age.
• 43 children are diagnosed with cancer in the United States EACH DAY!!!
• 15,695 children are diagnosed with cancer EACH YEAR!!!
• Childhood cancer is the leading cause of death by disease in American children, resulting in the death of approximately 1,800 kids EACH YEAR!!!
• More than 40,000 children are being treated for childhood cancer in our country EACH YEAR!!!
• Since 1980, only four drugs have been approved in the first instance for use in children.  In that same period of time, hundreds of drugs have been approved for treating adult cancers.
• For many of the childhood cancers, the same treatments that existed in the 1970’s continue with few, if any, changes.
• The National Cancer Institute (NCI) spent an average of 3.94% of its research funding on pediatric cancers research.
• Prostate cancer (patient average age at diagnosis, 66 years), receives more research funding from NCI than all childhood cancers combined

It seems like when our government learns of a new issue, they immediately turn it into a national health emergency (i.e. vaping, opiods, coronavirus, etc.), and I’m glad they move quickly on these issues to save people.  However, the fact is that we have 1,800 kids dying every single year from childhood cancer, and somehow that isn’t a national health emergency?

I understand that some may say that the cure for childhood cancer just isn’t out there…well I don’t believe that for a second.  Over the past six months, Megan and I have been contacting doctors all over the country to discuss the potential clinical trials they are working on.  Sadly, nearly every single doctor has the same story.  Each of them has a drug that has been highly successful with lab animals, but the drug is just sitting there because they lack the funding to take the drug to a full clinical trial.  Why?  Because most clinical trials are funded by the large pharmaceutical companies who do not view childhood cancer as a profitable venture.  So that leaves the Federal government, who instead focuses over 96% of their budget towards funding research for adult cancers and hope that maybe, by chance, something that is created to treat adults just might happen to work for children…which seldom happens.  I am firmly convinced that the answer to curing childhood cancer is sitting in a researcher’s lab right now…but since a full clinical trial costs $10 million, those solutions will continue to sit there…and more kids will continue to needlessly suffer.

Luckily, there are brave childhood cancer fighters like Megan and her peers who are advocating as hard as they can…and some people are starting to listen.  Unfortunately, our politicians continue to be tone deaf, and until they start listening, childhood cancer will claim the promising lives of 5 more kids today…5 more the day after that…and five more the day after that………  These brave kids deserve so much better.

Megan’s Journey has taught us the importance of taking advantage of opportunities when they come up instead of putting them off until some other time.  We took advantage of that philosophy this weekend and found a way to get family together for lunch on Saturday.  Kenzi made it down from college and we were joined by her boyfriend Nick, Uncle Todd and Gina, and Grandpa and Grandma Bugg.  It was so good to see everyone!

Since we knew Kenzi was going to meet us, we actually met with her prior to lunch so the girls could exchange their Valentine’s gifts for each other.  It was great to catch up with all of the great things Kenzi continues to accomplish at UW-Madison.  We continue to be so proud of her!!!

This past week, Megan received a visit from one of Kenzi’s good high school friends, Cali Caruso.  She is part of the Western Illinois University Chapter of “Love Your Melon”.  She brought Megan the sweetest care package complete with handmade cards from the WIU chapter members.  That visit really brought a smile to Megan’s face.

It’s scan week.  Megan could really use everyone on “Team Megan” to send her positive thoughts at 8:00 a.m. on Monday and on Tuesday morning as she completes her scans.  We will continue to follow Megan’s lead and think positive.  Although Megan is nervous, she is doing her best to put on a brave face and continue to think positive.  Today, when I was asking how she was doing, she stated that she was nervous, but was continuing to believe in herself.  She said,

“If you don’t believe there is a light at the end of the tunnel, then you will never find it.”

She pretty much summed up “Megan’s Journey”.  Let’s hope for good news this week.

A Bit of a Scare…and Then Relief

Megan is experiencing one of the best stretches she has been on since her original diagnosis on December 30, 2014.  She is approaching four months since her last chemotherapy treatment, and finally ridding her body of that poison has made a tremendous difference in her quality of life.  Her daily improvement is readily apparent in her increased activity level as instead of being too tired to have a social life, she is longing for opportunities to get out and about.  When Deb and I get home from work, we find that she has emptied the dishwasher, cleaned her bathroom, organized the pantry, and various other household chores.  In the past, just walking up the steps to get to her bathroom would leave her lying on her bed exhausted and gasping for air.  Now, after working around the house, she takes a quick break and is ready to head to the dance studio for work.  Given that childhood cancer has done nothing but beat her down physically and mentally over the past five years, it’s so refreshing to see her finally gaining strength and confidence with each passing day.  However, although Megan is fighting back with everything she has, cancer’s grasp doesn’t let go easily as evidenced early this week when Megan had a scare.

To an outsider looking in, it may seem that being in remission means all of your troubles are behind you.  However, to a childhood cancer patient, remission is only a partial relief.  Although chemotherapy is one of the most awful experiences you could ever imagine, Megan always found a certain level of mental comfort when she was receiving her chemo treatments.  She would share with us that although she hated how the chemo drugs made her feel, she knew that as long as she was receiving the drugs, her cancer would most likely not return…and there was comfort in that.  Learning that you have clean scans and no longer need chemotherapy is obviously the news every cancer patient hopes for, but with it comes a new mental battle.  Without chemo, there is the constant fear that the cancer is going to return.  During Megan’s first remission in 2016, she had to learn to deal with the anxiety that accompanies this good news.  When she was first in remission, she would constantly feel all over her body checking for tumors.  The slightest ache or pain would send her nearly into hysteria because she was sure her cancer had returned.  Like with many childhood cancer patients, it took some professional help for her to learn to deal with this anxiety.  As much as her family and friends tried to sympathize with her, none of us could truly understand what she was dealing with…which is why she counted so heavily on her fellow teenage cancer fighting warriors from all over the country and the world.  Her peers understood exactly what she was experiencing and they provided tremendous support to her.  It was a very rough time for Megan, but we learned that her experience was not at all unique among teenage childhood cancer survivors.  It’s so important for these cancer warriors that those around them understand the all to common mental struggles these survivors can face and make sure they receive whatever help they need.  I’ve said it many times…when a teenager is fighting childhood cancer, the physical battle pales in comparison to the mental battle.

Now that Megan is in her third remission, she has learned to handle the accompanying mental struggles much better.  Although she doesn’t spend near as much time worrying, it is understandable how that fear of relapse never truly goes away.  We all had a harsh reminder of that early this week when Megan believed she felt a bump on her body.  Unfortunately, we have had way too much experience in dealing with this type of issue, so knew exactly what Megan needed.  Deb immediately started contacting the members of her medical team who respond day or night to Megan’s needs (they are really incredible people!!!).  It was Sunday night when Megan thought she felt something, and within an hour, Deb had all of the necessary appointments lined up for Monday morning.  On Sunday night, Megan was obviously on edge and finally admitted that she needed some medication to help her sleep.  As a parent, it’s hard to explain the multitude of thoughts and fears that go through your mind as you try to avoid thinking the worst.  Sunday night and Monday morning were rough, but it’s nothing we haven’t done before.

Although it seemed like an eternity, thanks do Deb’s tenacity, some help from Nurse Kortni (our awesome neighbor) and some other awesome medical professionals, by Monday afternoon we received the good news that everything seemed to be fine.  There were still a couple medical test results to wait on, but the doctor assured Megan that she was okay.  By Tuesday, the other test results came back and showed that all was clear.  Although we always believe in Megan and her ability to beat down this evil disease, there is always an unbelievable sense of relief and calm that comes over me after learning that she is okay.  If I feel that way, I can’t even imagine how hearing the good news must make Megan feel.  As I’ve said before, fighting childhood cancer is like riding the biggest, baddest roller coaster you have ever seen.  The highs are euphoric and the lows are heartbreaking.  Somehow, Megan has learned to never let herself get too high or too low, and I think that is because she is so focused on the day in front of her.  When you have faced what Megan has, every single day is a blessing to be cherished and lived to the fullest.  I often marvel at, and envy, her incredible outlook on life.

After receiving good news from her doctors, Megan set about enjoying the rest of the week.  She went to work, went out for supper with friends, went shopping, and accompanied us to the Regional Wrestling and Speech meets where the Coalers took championships at both!!!  She even wanted to go bowling on Saturday night, which left both her dad and her feeling a little sore the next day :).

Of course, sometimes all of that activity still calls for a quick nap with her pets to rejuvenate 🙂

Over the past five years, Megan has been through more trials and tribulations than any person should ever have to face in an entire lifetime.  When I look back, there are so many times that I fear if I were in her shoes I would have waved the white flag and surrendered.  At the very least, I most likely would have grown extremely bitter at my predicament and spent a great deal of time wondering “Why me?”  Somehow..some way, Megan has never ever allowed herself to wallow in self pity.  Instead, every single time she gets mercilessly and brutally knocked down she takes a moment, collects herself, and gets back up ready for more.  I came across this quote the other day, so I saved it because it reminded me of the important lessons Megan has taught me…and hopefully taught others who have followed “Megan’s Journey”.

You must tell yourself, “No matter how hard it is, or how hard it gets, I’m going to make it.”

Les Brown

Those are words to live by.  Until next week…

Super Bowl…Super Week…Super Blessed

Megan finally seems to be fully recovered from her unexpected gallbladder surgery that set her back the day after New Years.  Also, the further removed she gets from those toxic chemotherapy treatments, the stronger she gets.  With each passing day she gains a little more strength and a little more stamina.  Slowly but surely, her lung capacity seems to be improving to the point that she really doesn’t ask for her wheelchair anymore.  If we were walking a very long distance, she would probably still need it, but prior to this, she needed it just to get in and out of a restaurant.  Besides gaining strength, one of the telltale signs that a cancer patient is getting better is when you start to see their hair come back…and if you look close, you can see Megan’s hair starting to grow.  Fighting this third official relapse set her back, but as usual, Megan never lost faith.  In fact, this latest fight only made her stronger and more determined than ever to defeat this evil beast.  As the great Babe Ruth once said,

“It’s hard to beat a person who never gives up.”

I could tell Megan was really feeling better this week when she wanted to go work extra time at the dance studio.  She and Miss Kim put in quite a few hours on Monday and Tuesday organizing and getting things ready for their June dance recital.  Megan also worked her regular shift on Wednesday and Thursday evening, but instead of coming home exhausted, she seemed to be more energized.  When she was in treatment, on the days she was actually able to get to work she would come home and head right up to bed because she was so tired.  Sometimes when she went to work, she would have to come home early because she was just too exhausted.  However, this week when she came home she told us about things that happened at work and seemed in no hurry to get to bed.  It’s so refreshing to see her getting back to her old self.  You will probably notice that there are not near as many pictures of her napping with her pets as I used to post.  Instead, she is usually playing with them or smiling as they keep her company.  It’s just one more sign that cancer is losing!!!

On Thursday evening, Megan came over to the high school after work because it was Senior Night for the Lady Coaler basketball team.  Since our neighbor, Madison Emerson, is a senior, we all wanted to see her play her final home game.  Madison was awesome as she scored 26 points and led our girls to a big win.  Here are a couple pictures from after the game.

We were all excited to get to Friday because Kenzi was coming home from college for the weekend.  Her 21st birthday was on Tuesday, January 28 (which doesn’t seem possible!!!), so she was coming home to celebrate with us over the weekend.  Also, our family traditionally has a Super Bowl party with friends and family, so Kenzi likes to come home for that as well.  This year, Kenzi brought her friends Ellyn and Jonah along for the weekend party, which only added to the fun atmosphere at our house.  Kenzi and her friends got in on Friday night, and on Saturday night we all went out to BASH in Ottawa for Kenzi’s birthday supper.  The food was great and we had so much fun!

On Sunday, we spent the day getting things ready for our Super Bowl party because our guests were going to start arriving at about 3:00 p.m.  As always, we all ate too much, but we sure enjoyed the fun and games.  While I was working to get some of the food ready, everyone else played some board games, and as you can see, they were having a great time.

After our guests got there, it was time to eat and get ready for the game.  My sister Amy lives in Kansas City, so were all pulling for her Chiefs to pull off the victory…which they did.  The game was exciting, but the real fun is getting together with family and friends.

As soon as the game ended, Kenzi and her friends loaded her car and started on the three hour trek back to Madison, WI.  As much as we wanted them to stay another night, they all have class in the morning and felt more comfortable getting back tonight instead of getting up at 5 a.m. to drive back.  We always miss Kenzi so much when she has to leave, but we know she is just where she needs to be right now.

Words could never adequately express how comforting it is to write a post about Megan actually feeling good.  It seems like every post for the past 7 months has been about Megan’s brutal treatments, the various difficult side effects caused by these toxic chemotherapy drugs, and other medical issues such as her unexpected gallbladder episode.  It’s been a long, hard fight back for her, but anyone who knows Megan knows that she never stays down for long.  She is getting stronger and is more determined than ever before…and that’s bad news for cancer!!!

It doesn’t get much better than this week.  Megan is feeling so much better; Kenzi was home for the weekend; and we got to spend today laughing with family and friends.  We are truly blessed.  Until next week…

 

 

One (Giant) Step at a Time

It’s now been about three months since Megan’s last chemotherapy treatment.  Even though her oncologists wanted her to receive 36 weeks of her most recent experimental chemotherapy treatment, her body could only handle 24 weeks.  The TAG chemo protocol she was on was starting to do too much damage to her lungs, and after a lung capacity test, her doctors immediately stopped her treatments.  Megan’s experience with chemotherapy is not atypical as unfortunately, due to these archaic treatments we use on our kids, many childhood cancer victims fall prey to the side effects of the chemotherapy as opposed to the cancer itself.  Even more disturbing is the sobering data showing that those kids fortunate enough to win their battles with childhood cancer often fall victim to various late effect health issues as a result of these outdated chemotherapy treatments.  According to the National Cancer Institute, 60% to more than 90% of childhood cancer survivors develop one or more chronic health conditions, while 20% to 80% experience severe or life-threatening complications during adulthood.  Although Megan’s related lung issues caused her latest chemotherapy treatment to be cut short, she has still endured 114 weeks of intense chemotherapy.  Needless to say, nearly two years of chemotherapy have wreaked havoc on her body, and trying to come back from that has been extremely challenging.  Add in her most recent week long hospital stay in Los Angeles where she had two emergency surgeries to remove a blockage in her bile duct and to remove her gallbladder, and it’s obvious that her recovery is going to be accomplished by taking one step at a time.  However, anyone who knows Megan understands that when it comes to taking her life back from cancer, patience is not her strong suit 🙂  Although it’s not happening as fast as she would like, we are seeing her make amazing progress…and not just physical progress, but mental progress as well.  As I have said previously, often times the physical battle pales in comparison to the mental challenges this cancer journey poses.

Although most outsiders looking in wouldn’t realize it, Megan took some huge steps forward this week.  Let’s start with the physical triumphs.  On Friday night, Megan wanted to go to the Joliet mall to get Kenzi a present for her 21st birthday.  Kenzi hits this milestone on January 28 and we are so excited that she a two of her friends are coming home next weekend so we can celebrate together.  We are thrilled to see her!!!  That is also Super Bowl weekend and our family always has a traditional party with Uncle Todd and his family as well as any other friends who want to stop over.  Megan is still struggling with her breathing as a result of the lung damage she incurred at the hands of her most recent chemotherapy treatment.  For the past few months, anytime we go somewhere that she has to walk any distance, we take a wheelchair because otherwise it’s just too much for her.  When we parked at the mall, we started to head back to get her wheelchair and Megan declined saying she wanted to try and do it herself.  Since we were only going to one store, she wanted to try to do it.  By the time we got back to the car she was exhausted, but also proud that she made it.  Not only did she show her physical toughness in making this long walk, but she also sent a message that it was time to start making incremental progress towards the goal of getting rid of that wheelchair once and for all.  It will take time, but she is determined to get there.

Another indicator that she is making progress on the physical front was her ability to start driving again.  After her lung problems started, Megan still drove, but not often.  Then after her recent surgeries, she hadn’t driven in a month.  This week, she got behind the wheel and today she is driving to meet a friend of hers in Morris for lunch.  We also had a discussion about her joining the gym again as she realizes she has to start actively working to get her strength back.  There are also the other little indicators that she is gaining physical strength every day.  For example, she is getting up a little earlier in the morning; playing with her pets a little more; and asking to go to events that previously she would have been far too tired to attend.  Just yesterday, Megan asked if I wanted to take her to the Illinois State University basketball game, because the On Broadway Dancers were going to be there and her cousin Danny works at the games.  So with about 15 minutes notice, we hopped in the car and make the hour trip south to watch the game.  Megan didn’t want her wheelchair and even climbed up 14 rows to get to her seat.  She was gasping for air when she sat down, and it took her a couple minutes to recover, but she did it!  Of course, the dancers were awesome and Megan got to catch up with her cousin Danny.  She and I had a great time as well 🙂

Although Megan is making slow but steady progress on the physical front, it is her attacking the mental aspect of this journey that makes us the most proud.  To make a five year story as succinct as possible, Megan lost her high school years.  Due to her treatments, she was never able to enjoy a full year of high school, and although that may not seem that difficult, for a teenage girl, it can be devastating.  During those lost four years, Megan lost connections with her friends; lost the ability to participate in volleyball; and lost the opportunity to be in musical productions.  Most importantly, she was so caught up in winning the day in front of her that she lost the ability to look towards the future and plan out her life.  While all of her friends were talking about their college and career plans, Megan was traveling weekly to the hospital to get even more chemotherapy poison pumped through her body.  To her, the future seemed not only outside of her grasp, but also quite insignificant when compared to the daily battle she was waging.  Megan’s plight is not unique for teenage childhood cancer warriors…in fact it is far too common.

This week, Megan took a significant step towards fighting back when she talked to her mom and I about her future.  It’s really the first time she has ever done so, because for the past five years, whether it was due to fear, anxiety, or simply being preoccupied with her daily battles, her future has really never been a topic of conversation.  However, this week, out of nowhere Megan shared with us that now that she is getting better she has been thinking about what she wants to do with her life.  She told us that she has decided she wants to give back to the medical community by becoming a nurse.  Only to each other, Deb and I have both shared how Megan’s experiences would make her such an amazing nurse, so to hear her verbalize it on her own was really special.  But what made her announcement even more special was that it seemed to be her moment to announce that cancer no longer had her in its grasp.  Instead, she was finally breaking free and ready to get on with her life.  They say that your life’s experiences shape who you become as an adult.  If that’s the case, the medical field is going to get the toughest, most compassionate, most determined nurse they could ever imagine.

Megan asked me to thank everyone who donated to her efforts to make gift bags for the teenage cancer kids and the mom’s who have been hospitalized following child birth.  This week she put all of the gift bags together and is ready to deliver them to Central DuPage Hospital.  In the face of her own adversity, Megan continues to understand the value of giving to others.  We are so proud of her!

Over the past five years, Megan has been knocked down over and over again only to come back stronger each time.  To an outsider looking in, her steps towards overcoming the mental and physical obstacles placed by childhood cancer may seem small, but in actuality, they are giant leaps forward.  Megan is coming on strong and soon cancer is going to be a fading memory.  Until next week…

Breaking the Grasp

Childhood cancer’s grip is incredibly powerful.  For the past five years, Megan has been fighting so hard to break free from cancer’s evil grip.  There have been times when Megan has come so close to realizing freedom only to have cancer tighten its grip even further.  It’s almost as if cancer toys with its victims to give them a false sense of security before rudely reminding them of its omnipresence.  It seems like fighting cancer is a cycle of diagnosis, treatment, and remission that repeats itself over and over again.  Cancer’s hope is that eventually it’s victims will finally tire of the battle and succumb to cancer’s vicious grasp.  Even though Megan has been through this arduous cycle four different times…somehow, not only has she maintained her desire to win, but with each relapse, her determination has grown even stronger.  Sooner or later, Megan’s will to win will allow her to break free from cancer’s grasp once and for all.  In the meantime, with a fierce resolve, she continues to valiantly battle back from whatever adversity is thrown at her…including her most recent setback.

Two weeks ago today, Megan had two surgeries to remove gallstones from her bile duct and to remove her gallbladder.  We happened to be on vacation in Los Angeles at the time until Megan’s trip was rudely interrupted with severe abdominal pain.  It took four days of tests and excruciating pain before the medical team at Cedar-Sinai Hospital determined that surgery was required.  Her hospital stay turned a four day trip to LA into an 11 day excursion…six of which were spent in the hospital.  Since she got home, she has been getting better day by day…with the help of her furry friends.

Of course, she is not recovering as fast as she thinks she should, but we keep reminding her that her body was already ravaged from finishing chemotherapy only two months ago, and she just had two surgical procedures.  It is going to take some time for her to recover, but she is getting there little by little.  This latest setback was just another example of that roller coaster ride that defines fighting childhood cancer.  Just two months ago we were on a high because Megan was declared in remission and would no longer have to undergo chemotherapy.  Her most recent medical issues brought us right back down again, but we are in the process of following Megan’s lead and fighting our way back.  In this battle, you can never let the tough times outshine all of those beautiful moments that continually present themselves each and every day.

On Thursday, Megan went to the CDH clinic to see Dr. Hayani for her monthly blood work and physical exam.  Thankfully, her blood work showed no indicators of cancer, and after Dr. Hayani’s thorough physical exam, he gave her the all clear for another month!!!  She does not have to go back until her next set of scans, which are on February 17 and 18.  Megan is always a little stressed going for her monthly exam, but the kindness of all of the awesome medical professionals there make her feel so much better.  It really is a very special place for all the brave kids fighting childhood cancer.

While we were at the clinic, Dr. Malandra (her GI doctor) stopped over to see her.  He also ran some blood work which showed some signs of pancreatitis and some elevated liver enzymes, but he said it was not unexpected given the trauma she experienced and her two surgical procedures.  She is going to repeat the blood tests in one week, and he fully expects her numbers to trend towards the normal range.  In the meantime, Megan will continue to experience some discomfort in her abdomen, but at least it is manageable.

Since Megan has been feeling better with each passing day, she was able to get out of the house this week.  She went to work at Broadway Dance Studio for a couple hours on Wednesday and Thursday night, which always brightens her spirits.  On Saturday, she and her mom went to a cat shelter to bring supplies and a monetary donation.  As all “Team Megan” members know, Megan is a huge animal lover, and she has a special soft spot for cats.  The “Just Animals Shelter” located at 505 Depot Street in Mazon, Illinois does a tremendous service in taking care of cats and finding adoptive homes for them.  Megan loves to support the shelter, and she really enjoys spending time with the roughly 40 cats they have at any one time.  She said that last year the shelter found homes for almost 500 cats, which is really incredible!  If you live anywhere close to Mazon and you are looking for a loving pet, you should stop by and check out the wonderful work they do.  Tell them Megan sent you 🙂

The fun continued for us on Sunday as we drove to Rockford to meet Kenzi for lunch and some shopping.  Rockford is only a little over an hour drive for Kenzi and it’s less than two hours for us, so meeting at the CherryVale Mall is perfect for us.  Kenzi has only been back at school for a week, but we already miss her, so it was great to have an opportunity to get the girls together before Kenzi starts classes this coming Tuesday.  It was a little easier saying goodbye to Kenzi knowing she would be home in a couple weeks for our annual Super Bowl party 🙂

There is no doubt that cancer’s grasp is both evil and incredibly strong.  In this battle, you must be able to navigate the tough times without becoming distracted or discouraged and taking your eye off the ultimate prize.  Words cannot express how hard it must be to stay motivated when cancer just keeps coming at you with a relentless barrage of mental and physical blows.  I really have no idea how Megan does it, but she just keeps moving forward day after day after day…all the while somehow keeping that infectious smile on her face.  The world would be a much better place if we all shared Megan’s outlook on life.  Until next week…

Finally…Back to the Comforts of Home

Our family vacation didn’t quite turn out the way we had planned.  If you read last week’s post, you know that our family traveled to Los Angeles to watch Kenzi’s Wisconsin Badgers participate in the Rose Bowl game.  We got to LA late on December 30 and had a great time until after the Rose Bowl game on January 1 when at about midnight, Megan started to complain of abdominal pain.  She has been having similar pains for the past three years, and has had a multitude of tests, including a hidascan about two months ago, but nothing was conclusive.  In the past, she has had some intense pain that starts in her upper abdominal area and radiates to her back, but it usually goes away within a couple hours.  Given her past history, we fully expected her pain to subside, but at 9:00 a.m., she was still struggling and the pain was intensifying.  Over the past five years, Megan has developed a very high pain tolerance, so when she said we needed to take her to the emergency room, we didn’t hesitate.  Our LA friends recommended we take her to Cedar-Sinai Hospital, which we did at 9:30 a.m. on January 2.  Over the next four days, Megan went through excruciating pain as the doctors tried to figure out what was going on with her.  Finally, they determined she had gallstones that had infected her gallbladder as well as stones that had made their way into her bile duct causing the pain to become even more severe.  On Sunday, January 5, Megan underwent two different surgeries; the first to retrieve the stones from her bile duct; the second to remove her gallbladder.  This week became a matter of recovery and her longing to get back to the comforts of home.

Since we were scheduled to fly out on Friday, January 3 Megan was really anxious to get home.  However, after two surgeries on Sunday, there was no way she was in any condition to fly home anytime soon.  Monday was pretty rough because although the intense pain was now gone, she was now dealing with the surgical pain.  Her doctors still had her on some heavy pain medication and anti-nausea medicine, which caused her to be in and out all day on Monday.  By Monday night, she started to show signs of bouncing back, and her surgical doctors said that if she continued to improve that quickly, she could be released from the hospital on Tuesday night.  However, they also said she could not fly home until Thursday at the earliest, which was extremely disappointing to Megan.

On Tuesday, Megan had visitors that really brightened her day.  When Megan was originally diagnosed five years ago, a very kind and generous actor who was originally from Chicago reached out to her.  I could never say enough about the kindness that Jonathan Sadowski and his finance, Melissa, have shown to Megan and our family over the past five years.  He is the one we called when Megan needed to be hospitalized, and through those four days prior to her surgery, he served as a personal chauffeur to our family members as some of us traveled to and from the hospital.  When Kenzi was alone where we were staying, Melissa called her and took her on a hike.  Jonathan stopped by the hospital to take Kenzi and I out for lunch.  Most importantly, he came to the hospital three different times to comfort Megan and Deb.  Every time Megan saw him, a smile came to her face and she was able to become distracted from the pain for little while.  It was so sweet watching Jonathon rub her back, hold her hand, and make her smile.  On one of his visits, he brought Megan a stuffed animal that she proudly showed off after her surgeries.  Jonathan Sadowski is one in a million, and I don’t know how we could ever thank him for all he has done for us.  Before Megan and Deb were finally able to fly out on Thursday, Jonathan and Melissa took Megan and Deb out for lunch.  As you can tell by the smile on Megan’s face, she was feeling much better by this point.

Since Megan was starting to feel better, she was finally released from the hospital on Tuesday evening.  I had a school board meeting on Wednesday night, so after Megan went to sleep on Tuesday night, I took an overnight red eye flight back to Chicago.  We had flown Kenzi home prior to that because it was quite traumatic watching her sister in so much pain.  Besides, we needed someone to come home and take care of the pets.  When Megan was in the hospital, it really helped when Kenzi would Facetime her and show her the pets.  Those were some of the few times that Megan was actually able to crack a smile 🙂  Finally, Megan was released to fly home on Thursday afternoon.  Megan was nervous about getting on a plane with her pain and nausea, but she was so anxious to get home.  It didn’t help her anxiety that their flight was delayed for 45 minutes 😦

Kenzi and I got to the airport at 6:00 p.m. to pick Megan and Deb up from the airport.  Kenzi wanted to go in to the baggage area to meet Megan, so I dropped her off and circled in the van until they arrived.  It was so good to see them!!!  Unfortunately, the ride home was rough for Megan as she threw up on the way home, but she has done that so many times in the past, it was no big deal for her.  We pulled off at a gas station where she washed out her mouth and got right back in the car because she wanted to get home as soon as possible.  Obviously, when she walked in the door, her first order of business was to find her Boo Boo Kitty.  It didn’t take long for the two of them to reconnect 🙂

And of course, when Megan went to bed soon after, there was Boo Boo again.

The next night, Belushi wanted in on the action.

Kenzi was pretty happy when Megan shared Boo Boo with her 🙂

Since arriving back home on Thursday night, Megan has steadily improved.  She is gaining strength, and her pain is subsiding a little more each day.  Although there is nothing she could have done about it, the timing of her hospital stay and surgery was not the best, because unfortunately, Kenzi has to go back to college on Monday 😦  Usually, when Kenzi is home, the girls make Starbucks runs, go shopping, out for lunch, etc., but this time, Kenzi has been hanging with Megan on the couch as they watch Netflix shows.  It’s not as much fun as they usually have, but at least they have been able to spend the weekend together.

Kenzi’s 21st birthday is on January 28 (hard to believe!!!).  Since she won’t be home on her birthday, prior to Megan’s ordeal, we planned to go our for an early birthday dinner today.  We left it up to Megan, and she still wanted to go out and celebrate Kenzi’s early birthday dinner today…even though she still wasn’t feeling all that great.  We had a great time celebrating Kenzi’s early 21st birthday.  We continue to be so proud of everything she has accomplished; even in the face of being constantly worried about her sister.  Many people forget the toll that childhood cancer plays on siblings…it is a very real anxiety and pain that they feel, and in spite of it all, Kenzi is still thriving.  Although we will miss her while she is away for the second semester of her junior year, we know she is in the right place and doing the right thing.  She and Megan will continue to love and support each other from afar.

As a parent, it was so difficult to watch Megan in so much pain, but we are very hopeful that this surgery might actually relieve the frequent abdominal pain issues she has experienced over the past three years.  It’s also very good to see her starting to feel better.  However, as usual, Megan’s reprieve is short-lived as she has her monthly physical exam and blood work with her oncologist on Thursday morning.  Although we do not expect any cancer-related issues, there is always that nagging fear in the back of our minds whenever Megan has a medical appointment.  Let’s hope that she finally gets a well-deserved break from all of this!!!  In the meantime, there really is no place like home!!!  Until next week…