Lessons Learned

As our country continues down this unprecedented pandemic path, everyone is learning to deal with the new norm of social distancing.  This seems to be yet another chapter in what has definitely been an interesting 5+ years for Megan and our family.  Megan was originally diagnosed with stage 4 Alveolar Rhabdomyosarcoma on December 30, 2014 when she was just 13 years old.  When she was just six months into her 54 week initial chemotherapy/radiation treatment, our house was hit by an EF3 tornado.  I will never forget looking at the devastation of our house and community, yet knowing that we had to have Megan in Warrenville the next morning for her proton radiation treatment.  It took us three months to get back into our house, but we were some of the lucky ones, because other homes were so badly damaged that it took a full year before they could move back home.  Megan’s first relapse was in February, 2017, which required her to go through another 36 weeks of intense chemotherapy and more proton radiation.  In August, 2017, we adjusted to Kenzi heading off to the University of Wisconsin-Madison for college, which was a huge change for Megan and our family.  In 2018, Megan’s scans showed another area on her back that was concerning, so she went through even more proton radiation.  In April, 2019, Megan relapsed again and underwent 24 weeks of an experimental chemotherapy treatment that proved successful in treating her tumors.  She was supposed to receive 32 weeks of treatment, but the chemotherapy caused so much damage to her lungs that her doctors abandoned that treatment plan.  Megan’s last scans were clear, which was the best news ever!  However, now we are making the best of the “Stay at Home” order, which based on what the President said today, looks like it will probably be extended until at least May 1.  It’s definitely been an eventful 5+ years in the Bugg home…but through it all, we still consider ourselves so fortunate for so many reasons.

We are blessed because Megan is once again in remission!  She continues to fight cancer with everything she’s got as she absolutely refuses to give in to the evil beast.  She has defied all of the odds in proving her own personal belief that the statistics don’t mean anything.  Megan doesn’t even bother with the statistics, because she says that she’s not a number.  A number does not take into account a person’s internal desire to win at all costs, and Megan’s will to win is second to none.  She continues to serve as a source of inspiration to me personally, and to so many who know her.

We are blessed because “Megan’s Journey” has taught us that there is so much good in this world.  When Megan was initially diagnosed, our family was in shock.  However, we quickly learned the sense of community that exists in our small town.  We were overwhelmed with the love and support Megan and our family received from the people who made up what became known as “Team Megan”.  This Team has not only become a powerful force, but it consists of the most compassionate, caring people around.  We are so grateful to everyone on “Team Megan” as you have been an integral part of Megan’s recovery.

We are blessed because Megan’s illness has reinforced the importance of family.  Prior to Megan becoming ill, we were all so busy that we often missed those beautiful moments that every family experiences, but is likely to miss if your not paying attention.  We learned not to take a single moment with our family for granted, because you just never know what life will throw at you next.  We have been forced to cancel numerous vacations due to Megan relapsing, but that just makes us appreciate our vacations that much more.  There are so many other examples of family events that have now taken on a whole new meaning for us.  This whole pandemic is troubling, but the silver lining for us is that because Kenzi’s college cancelled in-person classes, our family is together again for the foreseeable future.  Given that Kenzi is completing her junior year of college, this was an unexpected, but treasured, surprise.  Experiencing the quality time we have been able to spend together over the past couple of weeks is something I will always remember.

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We are also blessed because Megan has taught us the importance of standing up for something bigger than yourself.  In today’s world, it is so easy to become so completely self-absorbed in our own problems that we forget about the greater good.  In the midst of Megan fighting for her life, she decided to be about something bigger than herself.  She decided that she would no longer just fight her own personal battle, but she was going to fight the battle for every single kid who is fighting childhood cancer.  While fighting her own battle, she took to the local, state, and even the national stage to spread the word that kids fighting cancer deserve so much more.  She took her battle cry of “More Than 4” across the country via social media, politicians, national clothing chains, and even to Washington D.C.  Sure…our family has had our share of mountains to climb, but those trials and tribulations have taught us the importance of compassion and caring.  There is always someone out there who has it worse than you, so don’t just be thankful for what you have, go find that person who needs your help.

I have no doubt that living through this pandemic will present yet more valuable lessons for our family.  In the meantime, we are going to continue making the best out of a tough situation, and I hope all of you are able to do the same.  Here are a few pictures from our “Stay at Home” week.

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This 1500 piece puzzle kept our family busy for the entire week, but today it was finally completed.
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The kitchen table has seen lots of gaming lately. Here is a hot game of Jenga.
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Another Jenga game where Megan is in the zone! 🙂
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Kenzi got a little pet time this morning. She even managed to get Megan’s Boo Boo Kitty to lay with her for a bit. I’m not sure Megan was real happy about that 🙂
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Of course…Boo Boo always returns to Megan eventually.
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It was my birthday this week, so the girls did a great job of spoiling me. Kenzi made chicken and shrimp fajitas for supper, which were awesome! Megan made those yummy chocolate frosted brownies that you see in the picture. It was a very fun evening.  I am definitely a very lucky Dad!!!

Until next week…

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Keeping the Faith

As we all travel down this new and unexpected path caused by the Coronavirus, I can’t help but reflect back on the many lessons “Megan’s Journey” has taught our family.  In last week’s post, I wrote about how “social distancing” is really not that big of a deal to a family who has experienced childhood cancer, because we’ve all been there, done that.  Even this newest “Stay at Home” order issued by Governor Pritzker is really not that big of a change from what we had to do when Megan’s immune system was compromised via chemotherapy.  Of course there our still times our family gets a little stir crazy, because we are taking this social distancing order very seriously.  However, on the bright side, Kenzi is back home with us for an extended period of time, and since she is already a junior in college, who knew if that would ever happen again.  Deb is completely off of work right now, and although I have been very busy dealing with school-related matters, this “Stay at Home” order will have me working from home most of the days to come.  It’s actually been refreshing to have our family together as we are cooking more meals together, taking walks together (I’m not sure our dog knows what has hit him!), playing games together, and completing family puzzles.  Luckily, to date, our social distancing efforts have kept our family safe and healthy, and I am hoping the same for all of you as well.

As I continue to encounter similarities between “Megan’s Journey” and our nation’s current crisis, one thing I keep coming back to is the importance of believing that in the end, we will persevere and everything will be okay.  In short, you have to keep the faith.  From Day #1 of “Megan’s Journey”, she sent a message loud and clear that there was no doubt in her mind that she was going to win her battle against cancer, and she had no time in her life for anyone who didn’t believe in her.  I’ve mentioned it many times in previous blog posts, but the very first day of Megan’s battle is etched in my mind forever.
At the tender age of 13, she was lying down on a hospital bed after just being told that she had Stage 4 Alveolar Rhabdomyosarcoma and was about to endure 54 weeks of chemotherapy.  With that heavy and devastating news fresh in her mind, she looked at her mother and I with determination on her face and said these profound and powerful words that I will never forget,

“Please don’t say ‘I’m sorry’.  When you say ‘I’m Sorry’, it makes me think you don’t believe I can get better, and I’m going to get better.”

And with those words, the entire theme of “Megan’s Journey” was born.  Since that emotional and scary day, Megan has never strayed from the positive attitude she displayed on Day #1 five years ago.  Of course there have been tough times that tested her metal with physical and mental obstacles that were cruel and challenging.  But each time cancer knocked her down, she would dust herself off; take a moment to regroup; and then get right back in the middle of the ring ready to fight the next round.  She knew that her pain and misery were temporary, because in the end, she believed she was going to win.  She never lost faith.

As you, your family, your community and our country deal with this Coronavirus scare, it is so important that we never let it win by allowing it break us down mentally.  We all have to remain positive in our belief that this is temporary, and in the end, we will win the battle and things will return to normal.  However, just like we had to do when Megan’s immune system was compromised to keep her safe, it is important that everyone do their part to slow the spread and give the medical community a chance to catch up and keep all of us safe.  This too shall pass…but in the meantime, you have to keep the faith.

I mentioned earlier how our family had been coping with the recent “Stay at Home” order and the social distancing recommendation prior to that.  Here are a few pictures of what has been going on around our house for the past few days.

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With Kenzi being home, it’s been nice that the girls have had a chance to reconnect. Here they are having a sleep-over in Kenzi’s room 🙂
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Megan got outside to take her Boo Boo Kitty for a walk in her special cat stroller…yes…there actually is such a thing 😉
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There have been lots of family games. Kenzi is obviously a little stressed in this one 🙂
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Now that Kenzi’s University of Wisconsin-Madison coursework is online for the rest of the semester, she has taken over the office as her study spot. Even though her classes don’t officially start again until Monday, in typical Kenzi fashion, she decided to get ahead of the game on Sunday.

Even though Megan is being very careful in regards to who she comes in contact with, she is still finding time to continue gaining strength and stamina.  I keep reminding her that her body was physically beat up for five years, so she is not going to get to 100% overnight.  However, I am very proud of the efforts she is making, and we see the incremental progress every day.  She has started wearing her FitBit and is trying to walk 5000 steps per day.  Unfortunately, the weather hasn’t been cooperating that well, but she bundles up and gets outside to walk Sparky when she can.  She has also started doing some low impact online yoga routines to increase her flexibility.  One of the chemo drugs Megan took was Vincristine, and it wreaked havoc on her flexibility.  That’s the same drug that caused her foot drop, which Megan is still working hard to overcome.  Considering how bad it was a few years ago, unless you looked very carefully, you wouldn’t even know she ever had the problem in the past.  Of course, after her physical exercise, there are still those times when she needs a little rest and relaxation, which is just fine with Willow (a.k.a. Boo Boo Kitty).

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In closing, I want to give props to all of those healthcare heroes who are continuing work on the front lines of this Coronavirus crisis.  They put themselves and their families at risk every single day to keep us safe.  It is heartbreaking to hear that hospitals are already running low on Personal Protective Equipment (PPE).  These healthcare heroes deserve better, so I encourage anyone who has PPE gear they can spare to donate it to your local hospital.  I was so proud of the Grundy Area Vocational Center as they donated a plethora of PPE equipment from the Health Occupations program to Morris Hospital.  I sent an email out today asking our school district’s science teachers, nurses and health aides if they had any PPE equipment in there classrooms or offices that could be spared, and I have been flooded with responses from our caring staff members.  Our school district will be collecting those materials and donating them to Morris Hospital as soon as possible.  I also know that the seamstresses who help with our school district’s theater program are going to be using their skills to sew protective masks for our local healthcare professionals.  Every little bit helps.  During “Megan’s Journey” and the Coal City/Diamond tornadoes, we learned firsthand how quickly a community can come together in times of crisis.  Our healthcare providers need us now, so please help if you can.

We are definitely living in unprecedented times, but if we all stay vigilant and all do our parts, we will get through this.  Megan and our family have been living with childhood cancer for over five years, so this “Stay at Home” order is just a blip on the radar screen in comparison.  Just remember…this too shall pass.  Keep the faith.

Until next week…

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We’ve Done This Before

I would have to agree that the last few days have been like nothing I’ve ever seen before.  It seems like the Coronavirus (COVID-19) is starting to dominate many facets of our lives.  As a school superintendent, my last four days have consisted of constant conversations about how best to protect the health and safety of our students.  Just today, the Governor of Illinois announced that dining in at all restaurants and bars will be closed as of Tuesday morning.  When you go to stores, not only are people sadly hoarding supplies, but things like cleaning supplies are nowhere to be found.  I can appreciate everyone’s fear and trepidation regarding these uncharted waters…but if you are looking for advice, or possibly a blueprint, on how to cope with social distancing, just ask the family of a childhood cancer patient.  We have all lived a similar scenario many times over in our lives.

When a child undergoes chemotherapy, the immune system is severely compromised.  Chemotherapy medicines target rapidly dividing cells, which cancer cells are…but so are many of the normal cells in your blood, bone marrow, mouth, intestinal tract, nose, nails and hair.  As a result, in the process of targeting the cancer cells, chemotherapy also destroys these other fast growing cells in the body, which is the reason chemotherapy patients loses their hair during treatment.  In terms of the immune system, as chemotherapy medicines damage the bone marrow, the marrow is not able to produce enough red blood cells, white blood cells and platelets.  This is why chemotherapy patients must have their blood tested so often.  If their red blood cells or platelets get too low, they can receive transfusions to address that problem.  However, typically the most severe impact is on the white blood cells, and when you don’t have enough white blood cells, your body becomes much more susceptible to infections.  Unfortunately, a blood transfusion cannot correct this.  Instead, there are medications such as Neupogen and Neulasta that can help stimulate the growth of white blood cells, but those drugs take a number of days to work.

When children undergo intense chemotherapy, there are times where their white blood counts drop to dangerously low levels.  This increases the risk of infection because if a child with a low white blood cell count gets sick, the body no longer possesses the means to fight off the infection.  The results can be deadly for these kids.  When Megan was undergoing intense chemotherapy, if her fever ever got over 100, we were instructed to immediately go to the Emergency Room where she would be admitted for three days of in-patient antibiotics…no questions asked.  When Megan’s blood counts were low, we would have to screen anyone who came to our house to make sure they were not sick.  We also required anyone who entered the house to wash their hands, and instructed them not to touch Megan.  We aggressively and frequently cleaned hard surfaces with disinfectant.  We could not take her out to restaurants, to the mall, and she especially could not be at school.  Megan missed most of her high school career because her doctors said it was too dangerous for her to be at school with people who might be sick.  When she finally was allowed to go to school for a short time, she was instructed to call us immediately if someone in her class was coughing or blowing their nose.  There were no exceptions, because allowing exceptions could have been deadly.  Do all of these safety protocols sound familiar?

Megan is living proof that social distancing does work.  Our family and all of the other childhood cancer families out there are also living proof that we will all get through this.  Not getting to go to a restaurant, or not getting to go shopping are not the end of the world.  In reality, they are small prices to pay to save lives.  We childhood cancer families have all done this before, and we all made it through.  These are definitely difficult times, but they are not insurmountable times.  The same advice I give to those fighting childhood cancer is the same advice I will give with the current challenge facing our country…”Attitude is everything.”

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In the midst of the COVID-19 scare, Megan continues her battle back from childhood cancer.  Given the social distancing recommendations from the CDC, she is obviously spending a lot more time at home right now, but she is still gaining more and more strength and stamina.  She is also continuing her work with doctors and philanthropic organizations to try and get a clinical trial funded specific to Alveolar Rhabdomyosarcoma.  Megan’s goal has always been to not only win her personal battle, but to do everything in her power to make sure that no other kids have to go through what she has experienced over the past five years.

The COVID-19 issue has impacted Kenzi as well.  She came home for her spring break from the University of Wisconsin-Madison, which is the week of March 16.  She and two of her friends had planned a spring break trip to Boston, but they wisely decided to cancel.  Although it would have been great if she could have gone, we are very happy she will be home with us instead.  Kenzi also received notice from her University that due to the virus concerns, she will be taking all of her classes online until at least April 13.  So there is even more joy in our house as our family will be together until at least April 13.  Although they are limiting getting out of the house, they have managed to make a Starbucks run, play some games and work on a puzzle with Makenna Emerson.

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Monday is another big day for Megan as she has her monthly check-up and blood work at the CDH childhood cancer clinic.  Although we believe she is doing really well, Megan is obviously…and understandably…always nervous about her monthly appointments.  I know she would appreciate everyone on “Team Megan” sending her positive thoughts tomorrow at 11:00 a.m. I truly believe Megan feels your support whenever she is facing an anxious or stressful time.

Let’s hope all things related to COVID-19 improve soon.  Until then, practice social distancing, wash your hands…and trust all of us childhood cancer families who have been through this…you can do it!!!

Until next week…

 

The Cure Is Out There

Like many others in our country, I’m confident that most readers of this blog have been following the Coronavirus very closely.  According to the CDC website, the United States currently has 164 total known cases of the virus, and tragically, 11 people have died.  It’s unnerving to follow how the virus has spread, and people are understandably concerned.  It was refreshing last week to see that Congress quickly appropriated $8.3 billion to help fight the spread of the virus, and if our country’s past is any indicator of our future, I am confident that some very gifted scientists will eventually perfect a vaccine.  Although it takes time to move a potential vaccine through the testing process, our country has shown that when we put our focus and resources on a problem, we find a way to solve it.  $8.3 billion will go a long ways towards helping to fund the research labs across the country that will be working on this issue, and I am hopeful that we can slow the spread and eventually cure this new virus with a vaccine.

The Coronavirus is a terrible thing, and I feel badly for anyone suffering from this illness.  My heart especially goes out to the 11 people who have sadly lost their lives from this virus.  It’s for those people and for anyone else who may end up suffering from this virus that I am happy our country has made finding a solution our number one medical priority.  However, when you have lived with childhood cancer like our family has, and you have seen so many other brave warriors and their families suffer from this evil disease, you can’t help but feel a little jealous when you see how quickly $8.3 billion dollars became available.  I am supremely confident that for less than half that amount, we would have a cure for childhood cancer, which would have saved the promising lives of approximately 1,800 kids in 2019.  If we don’t find a childhood cancer cure in 2020, our nation will lose another 1,800 kids, and another 1,800 kids the year after that, and the year after that, and the year after that…

Currently, the National Cancer Institute budgets about $200 million to research specific to childhood cancer, which represents a little less than 4% of the entire Federal budget dedicated to cancer research.  The rest of their budget goes towards researching adult cancer drugs with the hope that by chance one of those adult cancer drugs will happen to work on childhood cancer.  It’s important to note that in addition to the Federal money allocated to adult cancers, the private pharmaceutical companies are responsible for about 60% of the total research dollars dedicated to finding treatments for adult cancers.  In contrast, for kids with childhood cancer, that number is almost ZERO!!!  For the pharmaceuticals, these kids are not a profitable venture, because childhood cancer is considered rare when compared to some types of adult cancers.  So not only do adult cancers receive 96% of the NCI’s budget, but in addition, about 60% of all funds allocated to adult cancer research come from the pharmaceuticals.  Sadly, these brave childhood cancer warriors continue to be the forgotten group in our country’s attempt to treat cancer.

Every single day in our country, 43 more kids learn that they have childhood cancer.  This year alone, there will be about 15,000 families who learn that they have a child who has childhood cancer.  The parents of those 15,000 kids will watch as their child is treated with archaic chemotherapy treatments designed in the 1070’s with side effects that we would never think of inflicting on our worst enemies.  Could we do better?  Absolutely!!!  Megan has been reaching out to doctors all over the country as she works to secure a clinical trial for Alveolar Rhabdomyosarcoma.  In her conversations with these doctors, the consistent message they give could have been recorded and played back over and over again…because they all said the same thing.  All of them have drugs that they believe could be the cure for ARMS, but all of them are held up in the lab due to a lack of funding to get them to clinical trial.  Through Megan’s conversations, we have learned that a small ten person trial can cost $1 million, and to get a drug to a full clinical trial would cost up to $10 million.  Since the private pharmaceuticals want nothing to do with funding childhood cancer research, that leaves the Federal government, and we have already seen how anemic their response has been.  What I do know is that a fraction of the $8.3 billion that suddenly became available virtually overnight to fight the Coronavirus would go a long ways towards saving the lives of up to 1,800 kids this year alone!!!  I know the cure for these brave kids is out there…we just have to make finding it a priority.  Until then, more and more kids and their families will continue to be ravaged by this awful disease.

Our family realizes that we are some of the lucky ones.  Megan is not longer in treatment; recently had clean scans; and continues to defy all of the odds associates with ARMS.  Her steely determination and incredibly positive attitude continue to be her greatest attributes…along with all of the love and support she receives from her family, friends, and everyone on “Team Megan.”  I’ve said it before and I’ll say it again…in this battle, attitude really is everything.

As Megan’s strength and stamina continually improve, she is becoming more and more active with friends.  She went to work on Wednesday and Thursday, and coupled that with a trip to Starbucks and going out to eat with her good friend from the dance studio, Emma.  This weekend, she went to stay with her friends Ava and Emma Blaser and watch them perform in a dance contest.  Ava is a childhood cancer survivor, and she and her older sister Emma are quite the accomplished dancers.  The girls met a couple years ago at Curefest in Washington, D.C. and they have stayed close every since.  Here are a couple pictures of Megan and the girls this weekend.

Today, we went to the Coal City High School musical production of “The Hunchback of Notre Dame”.  It was absolutely incredible!!!  If you have not been to one of our school’s musical productions, you may think this is hyperbole, but you really feel like you are watching a show on Broadway.  The performances are that good!!!  Everything from the performers, to the costumes and set design are unbelievable.  The show will be playing again next weekend, and if you are anywhere in the area, you should check it out.  For $8/ticket, you really cannot beat the entertainment value.  Megan’s good friend Sophia played Esmeralda, and she was amazing…as were all of the other student performers.  Congratulations to Director Jack Micetich, his creative team, and all of the performers on a job well done.

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Megan is getting stronger and stronger with each passing week.  She continues to play the hand she has been dealt with a determination, grace and dignity that is far beyond her 18 years of age.  But Megan is not alone in her attitude and fight, because so many of her childhood cancer peers also share her indomitable spirit.  In the face of fighting a battle they should have never had to fight, they continue to be the toughest, most genuine group of kids I have ever been around.  I long for the day when our country makes curing childhood cancer a priority so each of these precious kids can be what they want to be…just a normal kid.  Is that really too much to ask?

Until next week…

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It’s Always There

Megan’s last chemo treatment was in November, 2019.  She also recently learned that her latest set of three month CT and MRI scans came back with No Evidence of Disease (NED), which is the news every cancer fighter hopes for.  She has been steadily gaining strength and stamina the further removed she gets from her last chemotherapy treatments.  Over the past month, she has been going to physical therapy two or three times per week to try and get stronger, because the last five years have left her body in a ravaged state.  She has also been trying to do more walking, because it was just a couple months ago that she couldn’t walk to the bathroom without gasping for air.  Now that she is gaining more strength and stamina, she has also gained more confidence.  When she was in treatment, she would always be nervous to go out with her friends because she never knew when her body would break down.  So it’s been refreshing to see her planning lunch and dinner dates, going bowling, and making Starbucks runs with her friends much more frequently.  Megan is as determined as ever to win her battle with this beast, but as I have said so many times, the physical battle pales in comparison to the mental challenges fighting cancer presents.

This week, there were multiple times where Megan would be sitting on the couch and it seemed like she was a thousand miles away.  I would ask her if she was okay, and at first she would answer in the affirmative, but after some prodding, she would admit that she was really struggling with anxiety.  She just had clean scans, so to an outsider looking in, what could she possibly be anxious about?  The answer…the fear of relapse never truly goes away.  And for Megan, the fear of another relapse is even more intense because she is well aware that she has exhausted her research-based chemotherapy treatment options.  Fortunately, proton radiation has been successful for her, but in the case of a tumor in a spot that cannot be radiated, Megan is left with the hope that there is some experimental treatment option for her.  That reality is what is making Megan so anxious.  She is old enough to comprehend the reality of her situation, and it’s that reality that causes her to periodically experience these bouts of anxiety.  Megan has been down this road enough times that she is pretty adept at managing her anxiety symptoms, but there are times that it gets the best of her…and it’s heartbreaking to witness.  I cannot begin to imagine the mental burden that Megan and all of her fellow childhood cancer fighting warriors must bear every single day.  I really don’t know how they do it.

Fortunately for Megan, she was able to stay pretty busy this week, which kept her mind occupied and off of her fears.  She went to work at the dance studio on Wednesday and Thursday, and both before and after work, she hung out with friends from the studio.  However, the big plans were for this weekend.  Kenzi has been trying to find a time for Megan to come up and visit her at the University of Wisconsin-Madison.  Megan has stayed with her sister at college before, but with treatment first semester, it just never worked out this year.  After looking at their calendars, the girls set this weekend as their sister sleepover.  We found a meeting point in Rockford, so on Friday after work, we took off to drop Megan with Kenzi for the weekend.  It was so much fun to have our family together for supper on Friday night!

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On Sunday afternoon, Deb and I drove up to meet the girls again for a late lunch, but not before Kenzi and Megan had a blast all weekend.  When we met for lunch, Kenzi detailed everything they did together including movies, shopping, campus walks, and food that of course included some nachos 🙂

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After our late lunch visit, it was time for Kenzi to head back to campus and get caught up on her homework.  I think Kenzi kept Megan pretty busy all weekend, because on the way home, Megan fell asleep right away and didn’t wake up until we were almost home.  It was great the girls got to spend some time together, and the quality sister time was perfect timing for Megan.

Here’s the thing about childhood cancer…when actively fighting the disease, the physical and mental toll are absolutely brutal.  Unless you have experienced it firsthand, I could never adequately explain the brutality with words.  Chemotherapy is the most awful thing I have ever witnessed…and with Megan, she has been through it for 114 weeks!!!  Sure…you celebrate when the treatment is over and you receive clean scan results…but the harsh reality is that at that point, the battle is far from over.  Cancer’s grasp is strong and fierce, and it takes someone willing to confront the disease with an even greater strength and determination to have any chance of winning.  I know in my heart that Megan is that strong of a person…but she is also human, which means there are times that the battle might get the best of her.  Fortunately, Megan has learned to make sure those times are in the minority, and that the majority of her time is spent knowing that she will ultimately win her battle.  To successfully defeat this evil beast, you can never let the negative thoughts overtake the positive ones.  Sometimes it gets really hard, and that’s when brave cancer fighters like Megan have to count on the love and support of family and friends, because it’s that love and support that gets them through the tough times.

For those fighting childhood cancer, the truth is…clean scan or not…cancer is ALWAYS there.  Until our country makes curing childhood cancer a priority, that’s the reality these kids will always deal with.  Megan and her brave cancer fighting friends are trying to make a difference by using their strong and powerful voices to raise awareness for the cause.  For the sake of all of these brave warriors, past, present and future…I hope someone is listening.

Until next week…

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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 🙂

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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.

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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.

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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.

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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.

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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.

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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!

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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!!!

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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.

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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.

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