No Room for Cancer at the Party

It’s only been two weeks since Megan received the news that her doctors were stopping her chemotherapy treatments.  Although this experimental combination of chemotherapy drugs was working, as evidenced by her recent clear scans, the damage the toxic drugs were doing to her lungs made it too risky to continue with the treatments.  Her oncologists had hoped to get her through 12 rounds (36 weeks) of treatment, but Megan’s body could only handle 8 rounds.  Although you would think Megan would have been excited to know that she would not longer have to go through these toxic treatments, the reality was that stopping the treatments really scared her.  Chemotherapy is brutal, but Megan knows that while she is getting these drugs, her cancer most likely will not return.  Once she is off chemotherapy, she is understandably scared of a relapse, because she has experienced that three times before.  Although she went through a couple tough days following this news, in typical Megan fashion, she bounced back quickly and decided it was time to make the most of her reprieve.  Based on her clean scans, her doctors declared her officially in remission…just in time to regain her health for the holiday season.

Like all kids who go through the nightmare of chemotherapy, Megan’s body has been ravaged by 114 weeks of these toxic drugs.  Her latest treatments really wreaked havoc on her…especially due to the damage to her lungs.  Late in her treatment, Megan became so short of breath that just walking from the couch to the bathroom left her gasping for air.  As a result, she was forced to be fairly sedentary, which led to her becoming physically weak.  As we look back on it now, chemotherapy really had her trapped in a vicious cycle as she tried her best to get to the end of her 36 weeks of treatment.  Once Megan’s lung test results came back, it was obvious that as much as she wanted to continue, her body was done with chemotherapy.  Unfortunately, that is the plight that faces most all kids fighting this awful disease.  Due to a serious and sad lack of attention to these brave kids, they are left with no other clinically proven option than these 30 year old toxic chemotherapy treatments that can literally cause as much damage as the cancer.  That’s why Megan is continuing to fight so hard to raise awareness and funding so that other kids don’t have to endure what she has been through at the hands of these archaic drugs.

Since Megan got over the initial shock of learning that she would not be able to complete her 36 weeks of chemotherapy treatments, she has decided it was time to flip the switch and take back control of her life.  She doesn’t have to go back for scans until mid-February, so until then, she is going to do her best to put childhood cancer on the back burner and continue on with her life.  Now that she is a couple weeks post-chemotherapy, we can see her body slowly getting stronger.  She is trying to slowly gain back her stamina by walking a little more.  Even though she still needs an inhaler to help catch her breath, she is looking for opportunities to strengthen her legs and lungs by walking when she can.  Just today, she woke up before 7 a.m. and said that she wanted to go grocery shopping with Deb and I.  She needed her wheelchair to get around Wal-Mart and Aldi, but when we got to Walgreens, she said she wanted to walk.  Two weeks ago, there is no way she could have walked through a store without assistance.  She is also focusing on eating a healthier diet.  When she was on chemotherapy, she also had to take a steroid to combat the side effects.  That steroid caused her eating habits to alter, which is a natural occurrence with many such drugs.  As a result, she said she didn’t feel good, but since she has focused on eating better, she claims to be doing much better.  She is also taking advantage of her newly found freedom to reconnect with friends, which she did multiple times this week.

Early this week, Megan met Kim Scerine for lunch.  Megan works at the dance studio that Kim owns, and they have become fast friends.  Kim and all of the people at the Broadway Dance Studio have been so supportive of Megan, and we are very thankful they are a part of her life.  Makenna Emerson also stopped by one day to take Megan to breakfast, which is always fun for her.  As you can see, the two of them get a little goofy when they are together 🙂

On Friday, Deb and Megan went to the annual Central DuPage Hospital Oncology Clinic holiday party.  I have mentioned it many times before, but I don’t know how we could ever properly thank all of the incredible medical professionals at CDH.  We could not be happier with the care they have given Megan.  All of them have become a part of our family, and Megan absolutely loves them.  Here are a few pictures from Friday’s party.

Kathy is the Nurse Practitioner at the clinic. She has become like Megan’s second mom at the clinic. She is one in a million and Megan adores her.

Allie is the Child Life Specialist at the Clinic, and she and Megan have become very close. When Megan is having a rough day, Allie is her go to buddy.

Dr. Hayani has been with Megan since day one of her journey five years ago. He is a brilliant doctor and an even better person.

Aileen is also a Child Life Specialist who usually works at the proton radiation center. I will never forget when Megan was starting her latest round of proton radiation and was very nervous. Aileen worked a full day, but then came back at 8:00 p.m. that night to be with Megan for her first treatment. Once again, another very special person.

This is Lexi. She is usually the first person Megan sees when she gets to the CDH clinic. She always greets Megan with a smile and they immediately start talking about their latest food adventures. Lexi always brightens Megan’s day.

Megan with more of the fantastic nurses that make up the team at the CDH clinic. They are all such awesome people 🙂

Megan and her mom with Mr. and Mrs. Claus 🙂

On Saturday, we took Megan to Naperville to spend the day with her good friend, Caitlin Cannon.  They took a trip to Starbucks, Mod Pizza, and went to see Frozen 2.  They even found time to take Caitlin’s puppy to visit Santa.  Megan ended up staying with Caitlin from 11:00 a.m. until 7:00 p.m., which is a really long day for Megan.  When she got home, she said she had a blast, but was really worn out.

Cancer has hit Megan with everything its got, but after five years of fighting back, Megan is as determined as ever to come away from this battle victorious.  There is no way she is going to let cancer dampen her holiday spirit.  She has big plans this holiday season, and there is just no room for cancer at the party.  Until next week…

Forever Thankful

This marks the fifth Thanksgiving our family has spent in the midst of Megan’s fight with stage 4 Alveolar Rhabdomyosarcoma.  This journey has been so incredibly hard on Megan, but it has also had a profound impact on our entire family.  Throughout her battle, we have tried so hard to follow Megan’s lead and always view the cup as half full.  Sure…there have been numerous times where keeping a positive attitude has been next to impossible.  Watching your daughter suffer from the mental and physical torture of chemotherapy is a pain I would never wish on any parent.  Seeing the impact Megan’s plight has had on her sister and mother is another type of agony that I hope none of you who are fathers ever have to endure.  Yes…there are so many times that I have wanted to wave the white flag and surrender to the evil that is childhood cancer.  Fortunately for me, and the rest of our family, we have Megan’s exemplary model of strength, courage and positivity to carry us through those tough times.  As a result, we are able to look past the strife and struggles and instead focus on the many blessings that have been bestowed upon our family.  This Thanksgiving weekend was yet another opportunity to bask in the blessings of family, friends, health and happiness.  It was indeed a glorious Thanksgiving weekend on so many fronts.

Two weeks ago, we received the fantastic news that Megan’s chest and abdomen CT scans came back with no evidence of disease.  Due to Megan’s lung issues, which were caused from her chemotherapy drugs, she is no longer in treatment.  As I mentioned last week, that may seem like a positive, but to Megan, not being on chemotherapy brings with it the real fear of relapse.  Therefore, to know that her CT scan was clear was definitely a relief for her.  However, the clean CT scan meant she was only halfway home because she still had a brain MRI scheduled for Tuesday.  We left for the hospital at 10:15 a.m. to report to the CDH surgery center by noon.  Megan was very disappointed because on the way to the hospital, we received a call that they were moving her MRI under anesthesia from 1:30 p.m. back to 3:30 p.m.  Since we were already only 30 minutes from the hospital, we continued on our way and reported to the CDH clinic where the awesome nurses there could access her port.  While she was there, she asked Dr. Hayani to look at her left hand because it had been swelled up for the past few days.  One of the chemotherapy drugs she had been on can cause swelling of the hands and feet, but since her left hand was so sore, Dr. Hayani decided he wanted to get an X-Ray.  So we left the CDH oncology clinic and headed over to X-Ray.  Fortunately, her X-Ray came back with no evidence of a break, but that worried Dr. Hayani so to be safe, he ordered an ultrasound of her left arm to rule out any blood clot or other blockage.  However, her anesthesiologist was now ready for her so we had to report to surgery for her to be put under for her one hour brain MRI.  Megan has been under anesthesia so many times that she knows her anesthesiologist well, as well as the other nurses who work in that department.  As usual, they treated her like a queen and we were out of there in record time.  Now it was time to make her second trip to diagnostic imaging for the ultrasound of her left arm.  After about an hour there, the technician said they saw no blockages, which was more good news.  After a long nine hour day at the hospital, Megan was finally released to come back home.

Although Megan was anxiously awaiting the results of her brain MRI, she had the best diversion ever as Kenzi came home late Monday night for Thanksgiving break.  It was fantastic having our entire family together for the holiday weekend, and the two girls found plenty of time to hang out doing their favorite things:  shopping, Starbucks, and food 🙂  Kenzi headed back to Madison Sunday night, but the good news is that she will be home for Christmas break in 16 days!!!

Megan got a great surprise on Wednesday night as our family friend Kay Cannon’s family dropped by for a visit.  Whenever Kay is here, there are always lots of laughs and lots of fun.  Her husband Eben, daughter Leni and Kay’s mother Rosemary all came over for a visit, supper, and games.  We were so appreciative that Kay and her family took time out of their busy schedules to visit.

This was a very special Thanksgiving as it was the first time we hosted the Bugg family holiday at our house.  Aunt Amy and Ed flew in from Omaha to be with us, and stayed overnight with us on Thanksgiving night.  Grandpa and Grandma Bugg also stayed at our house, and we were joined for Thanksgiving dinner by Uncle Todd and Gina, Todd’s daughter Emily and her family, Todd’s son Danny, Uncle Matt and Crystal, Matt’s daughter Carsyn, and Kenzi’s boyfriend Nick.  We had so much fun visiting with family and just enjoying the opportunity to get the Bugg side of the family together.

On Friday, Deb, Kenzi and Megan hit the Black Friday specials and followed their long day with an afternoon nap to catch up from their busy day.  On Saturday, we had Grandpa and Grandma Coope over, and of course, I failed to get a picture 😦  However, trust me that we had a wonderful visit with them.  On Saturday night, the three girls went to the On Broadway Dance Center Christmas Show at the high school, and our family followed that up with a late supper at New China, which is the girls favorite sushi place.  It was definitely a whirlwind few days, but it served as the perfect diversion to help  forget about cancer for a few days and instead focus on family and fun.

On Friday, we received the amazing news that Megan’s brain MRI came back stable, which means there was no evidence of cancerous tumors!!!  The scan still shows that spot at the base of her skull, but since it didn’t light up on her last PET scan, they are not treating it as a cancerous tumor.  Her next scans will not be until after the holidays, so hopefully Megan can spend the time gaining strength and stamina so she can enjoy her favorite holiday of the year–Christmas.  I can’t think of anyone more deserving of a Merry Christmas.

Our Thanksgiving holiday is over, but our being thankful is not.  We are so thankful for our loving family, our incredibly supportive friends, Megan’s fabulous health care team, and obviously, we are thankful for Megan’s improving health.  This Thanksgiving was just another reminder that with all of the craziness that is going on in this world, nothing is more important than family…and our family has been truly blessed.  Until next week…

The Full Range of Emotions

On many occasions, I have used the analogy of riding the biggest, baddest roller coaster in the world to explain the journey of fighting childhood cancer.  Over the past five years, Megan and our family have experienced the full range of emotions from utter despair to jubilation that is beyond compare.  Megan has taught us the importance of managing these highs and lows, because the failure to do so results in physical and mental exhaustion.  Somehow, Megan has become an absolute master of never getting too high when she receives good new, but never letting the bad news keep her down for long.  In fact, she usually finds a way to turn the bad news into that ray of hope that continues to drive her mission to defeat childhood cancer.  This past weeks was one of those weeks where Megan and our family had to navigate the good news, the bad news, and the uncertainty.  In the end, we were able to follow Megan’s lead and find that beacon of hope that will lead into a joyous and thankful holiday season.

A week ago Friday, Megan received the results of her lung capacity test and learned that her breathing difficulties were due to some significant decrease in her lung functioning.  Her oncologist quickly contacted us to let us know about the lung issues.  He told Megan that the lung damage was most likely caused by the combination of chemotherapy drugs she was on, and as a result, she would have to stop the treatment immediately.  When it comes to medical issues, it is common for patients to change drugs frequently as maybe they have a reaction to one drug they are taking.  For most medical conditions, there are numerous drugs that can treat the same illness.  However, due to a serious lack of attention and funding for childhood cancer, these kids aren’t so lucky.  Their treatment options are so limited.  If a child contracts Megan’s type of cancer (stage 4 Alveolar Rhabdomyosarcoma), the 54 week chemotherapy treatment protocol is consistent across the country.  If the same child relapses like Megan did in February, 2016, the 36 week chemotherapy treatment is consistent across the country.  If the same child relapses again…there are no clinically proven treatment options available.  Fortunately for Megan, her third relapse was in an area of her body that could be treated with proton radiation.  However, her current relapse (her 4th) could not be treated solely with proton radiation, so her medical team tried an experimental combination of chemotherapy drugs on her which was working.  Unfortunately, her lung damage means she can no longer be treated with this chemotherapy combination, and there is not another clinically proven treatment option out there for her.  Therefore, when Megan first heard the news that her lung damage meant no more chemotherapy, she was devastated and scared.  Yes…her body would get some much needed recovery time being off of these poisons, but at the same time, she was very worried that without chemotherapy, she could relapse again.  Such is the conundrum that all childhood cancer patients face:  stay on these toxic drugs and deal with the devastating side effects, or get off of chemotherapy and deal with the constant mental challenge of knowing that the beast could be lurking right around the corner.  It’s so unfair to these kids, and our country should be doing so much better for them.

On Monday, Megan also had a CT scan of her chest and abdomen.  Megan was really nervous about this one because she has just not been feeling good.  However, we were thrilled to get the results that her scans looked good.  Although she did have a couple dark spots on her lungs, her oncologist said Megan has had such small spots before and they turned out to be nothing.  He believes that to be the case again, so they will just monitor these spots on her next scan, which will take place in early January.  Although she was very nervous about no longer being on chemotherapy, the fact that the CT scan showed up clean really helped her mental state of mind.

As usual, it only took Megan about a day to pull herself together and start seeing the cup as half full.  She started talking about how she was looking forward to getting some strength back, which meant she could enjoy the holidays with her family and friends.  She was anxious to see her new lung doctor on Thursday to see what the extent of her lung damage was and whether it was treatable.  On Thursday, Megan met with the pulmonologist who went through all of her test results and discussed a treatment plan.  Megan learned that in addition to the diminished lung capacity, she also had some fluid on her left lung.  The doctor felt like now that she was off of chemotherapy the fluid issue might correct itself.  She also put Megan on an Albuterol inhaler that she will take every morning for the next week.  The doctor is hopeful that the inhaler will help her breathe better while her lungs heal.  Megan’s lung damage has resulted in a vicious cycle, because due to the fact that she can’t breath well, she also cannot tolerate any physical activity, which has resulted in her body becoming very weak.  It has gotten to the point that for anything more than a few steps, Megan has required a wheelchair to get around.  Megan was happy to learn that the inhaler might help her breath better, which will in turn help her become more active.  Overall, Megan was encouraged that the doctor felt like her lungs would get better and she could get some immediate relief with the inhaler.  That was one more medical visit where Megan viewed the cup as half full.

Megan’s 114 weeks of chemotherapy have left many of her bodily systems compromised.  One of those that continues to cause the most discomfort is her digestive system.  The issues she has cause constant discomfort..especially in the evenings when she is trying to go to sleep.  These issues also cause her to worry when she is out and about, because she doesn’t want to start feeling bad and be trapped without being able to come home and lie down.  She has had numerous CT scans, an endoscopy, and a gall bladder test and nothing seemed to provide any answers.  On Wednesday, Megan had an appointment with her gastro doctor who seemed to have a potential solution that made sense.  Megan will be uncomfortable for a couple days, but after that, he is hopeful that she gets some relief.  Her physical and mental state would be so much better if she could finally get some relief from these issues that have plagued her for four years.  Once again, Megan left that appointment feeling hopeful that relief was coming.

Megan had a week full of medical appointments that many might have seen as bad news.  However, Megan has managed to put a positive spin on the fact that she can no longer be protected with chemotherapy, has lung damage, and has chronic digestive issues.  Instead of being upset that she has all of these physical problems, she is hopeful that better days are right around the corner.  Considering everything she has been through over the past five years, these current issues are just a couple more hurdles to be cleared on her way to beating childhood cancer once and for all.  In fact, Megan was feeling so positive by the end of the week that she asked if she could accompany me to a convention in Chicago that I had to attend on Friday and Saturday.

Megan and I had a great time in Chicago.  Although she had to be transported around the city in a wheelchair, she didn’t let that stop her.  When I was busy at meetings, Megan found some of my co-workers to hang out with.  She went to lunch with many of the people from my office and even ended up getting some shopping in late Friday afternoon.  Most importantly, she got to go to the new five story Starbucks on Michigan Avenue, which I’m pretty sure was the highlight of her trip.  We had so much fun and I was so happy that she felt up to going with me.  Here are a few pictures of our adventures.

Megan with some of the awesome ladies from my office. They all take such good care of her 🙂

This is another big week for Megan as she has a brain MRI under anesthesia on Tuesday. We will continue to think positive and believe that this scan will also come back clean. Megan definitely has something to look forward to as Kenzi comes home on Monday night, which means our family will be together for Thankgiving.  Megan is so excited to have her favorite “play partner” back home for the week.  Every holiday is important, but when you are going through this journey, getting family together is treasured and can never be taken for granted.  We hope everyone has a very happy and blessed Thanksgiving.  Until next week…

 

What’s Next?

What’s next?  For the past five years, it seems like that’s the question Megan and our family keeps asking over and over again.  When Megan was originally diagnosed on December 30, 2014, we had no idea what was next.  After 54 weeks of intense chemotherapy and radiation treatments accompanied by severe side effects that no human should have to endure, we found out the hard way what was next.  Once Megan was officially declared in remission in January, 2016, once again, we really didn’t understand what was next.  After watching Megan go through a year in remission, which includes doctor check-ups every month, scans every three months, and the mental anguish of watching Megan obsess and worry over every ache and pain, we found out the answer to what was next.  When Megan first relapsed in February, 2016, again didn’t know what was next.  However, after 36 weeks more of chemotherapy and more proton radiation, we understood what was next.  After the completion of her 36 week relapse treatment, her first scans showed cancerous tumors, and we were once again faced with the question of what’s next.  We learned the sobering reality that due to a lack of funding and attention on childhood cancer, there were no more clinically proven chemotherapy options for Megan.  As a result, the answer was to once again treat her with another round of radiation.  After yet another three month scan showed more cancerous activity, we knew that chemotherapy was not an option and were relieved to find out that once again, her tumors could be treated with proton radiation.  Then another three month scan showed yet more cancerous activity that could not be treated solely with radiation.  Once again, we were left with that nagging question of what’s next.  The answer was an experimental chemotherapy treatment that Megan has been on for the past 24 weeks.  Although the treatment has been successful in shrinking her tumors, we are still left with the question “What’s next?”

Megan’s latest scans showed that this experimental chemotherapy combination has been remarkably effective at shrinking her tumors.  However, recently it has also become painfully apparent that her body just cannot handle too much more chemotherapy.  The cumulative effect of 114 weeks of chemotherapy has definitely taken a toll on her.  Currently, just getting dressed in the morning has her gasping to catch her breath.  She becomes fatigued so quickly that being out of the house for more than an hour requires a long period of rest at her favorite spot on the couch.  She has become so weak that if we go shopping, she needs a wheelchair to get around.  Her digestive issues have made it so that there is not a day when she actually feels good.  The steroid she is required to take causes her skin to feel so hot and sensitive that she can’t stand to be touched.  She is on so many medications to counteract the side effects of chemotherapy, and it seems that some of her medications are to counteract the side effects of the medications meant to counteract the side effects.  It’s a vicious cycle.  Here are the medications that Megan has to take first thing in the morning, which does not include the ones she takes midday and in the evening.

And those are just the physical effects she is dealing with, and doesn’t take into account the devastating mental toll this entire process is taking on her.  Megan is absolutely the most mentally strong person I have ever met.  She has attacked every step of this battle with a smile on her face, determination in her soul, and love in her heart.  However, even she is starting to become worn down by the constant mental struggle.  This battle is so difficult, and even the strongest of souls needs a chance to rejuvenate.  This is the exact conversation Megan bravely started to have with her doctors this past week.

At her chemotherapy treatment on Monday, Megan finally was able to tell her doctors that something had to give.  She is scheduled to go through four more three week cycles, which means she has 12 more weeks of chemotherapy left.  However, after hearing about all of her physical struggles, her doctors are starting to think that she needs a break from not just the physical battle, but from the mental fight as well.  After Monday’s emotional discussion, her doctors decided to move her next set of scans up to this week, and if everything comes back okay, we will then discuss giving her a break from her treatment.  Of course, Megan is scared to death of the scans this week, but she is also excited because if they come back clean, she will then get at least a short reprieve from chemotherapy to let her recover both physically and mentally.  She definitely deserves some time to try and be a “normal” person…even if it is for a short time.

Of course, the “scanxiety” will be in full effect this week as Megan has her CT scan on Monday morning at 10:30 a.m.  She will first report to the CDH oncology clinic at 8:30 a.m. for bloodwork and then we will head to diagnostic imaging for her CT scan.  Hopefully, those results come back on Tuesday.  She also has an appointment with her gastroenterologist on Wednesday to once again try and diagnose her constant digestive issues.  Then on Tuesday, November 26 Megan will have her brain MRI under anesthesia, which will complete her scans.  After all of her results are in, we will then have a consult with her medical team to answer that ever-present question of “What’s Next?”  We are hopeful that the answer is to give her a much needed break from the mental and physical grind.

It’s been another tough week for Megan as she has struggled to recover from two weeks of chemotherapy treatments.  Whenever she feels good, we try to get her out of the house…even if it’s just for a quick trip to Starbucks.  Yesterday, she made it out to her little buddy Fitz’s first birthday party.

Today, we were able to get her to the mall in Joliet for a short shopping trip, but she ran out of energy pretty quickly.  However, when she got home, she sat on the couch and starting working on her Christmas list, which kept her mind occupied.  Keeping the mind busy is so important, because it’s when there is down time that her mind tends to creep to the dark places of anxiety and fear.  Luckily, whenever those unseemly thoughts start to enter, one of her beloved pets seems to be right there to take her mind off this difficult battle.

Megan was very excited this week, because her precious Boo Boo Kitty (a.k.a. Willow) turned two years old on November 15.  Megan was all set to celebrate with a new cat tunnel she bought for her.  She also made her a “birthday cake” for her special day 🙂 Kenzi got that kitten for Megan two years ago, and I’m pretty sure she was the best gift ever!  After watching the effect that cat has had on Megan, I have become a firm believer in the healing power of therapy animals.

This is another big week for Megan as she goes through her next set of scans.  I know she would be appreciative if everyone on “Team Megan” sent her positive thoughts at 10:30 a.m. on Monday.  Let’s hope she receives some good news and that the answer to “What’s next?” is that Megan receives a hard-earned and well-deserved break from the constant physical and mental battle of the past five years.  Until next week…

It’s Getting Tougher

In previous posts, I have mentioned that in the cancer fighting journey, chemotherapy is both the hero and the villain.  It is the hero because unfortunately, chemotherapy is the only clinically proven method the medical community has to fight this vicious disease.  One would think that over the last 50 years, we would have made significant progress in discovering less toxic and more effective treatments for childhood cancer, but because these kids don’t matter to the big pharmaceutical companies nor to the Federal government, pumping this poison into our kids is the only chance they have.  Chemotherapy is also the villain, because so often the brave kids fighting childhood cancer don’t succumb to the disease itself, but rather to the side effects of these archaic treatments.  As a child moves through the many weeks of chemotherapy treatments, the cumulative effect of the drugs really starts to take a toll.  After this past Monday’s treatment, Megan has now been through 112 weeks of chemotherapy, and the process is really starting to take a toll on her physically.  Fortunately, she is so mentally strong that she is usually able to overcome the constant physical ailments that she is forced to endure…but everyone has their limits.

I could go back to week one of Megan’s very first chemotherapy treatment in January, 2015 and start listing all of the awful side effects that accompany these treatments…but this post would end up being far too long.  Suffice it to say, over the past five years, there has not been a single day that Megan has not had to deal with some side effect from her plethora of chemotherapy treatments…and that’s not hyperbole.  In her first 54 week chemotherapy protocol, the side effects continued to get worse due to the cumulative effect of the toxic drugs, and that was also the case in her 36 week relapse treatment as well as her current 36 week experimental TAG protocol.  She is currently in the 8th of 12 total cycles for this current treatment plan, and lately, it has become apparent that the cumulative effect is rearing its ugly head again.

When Megan first started this TAG treatment plan, she would always handle week one pretty well; week two was a killer; but then she would enjoy four or five really good days during her week three reprieve.  Unfortunately, week one is starting to really cause problems for her, and even her week 3 when she doesn’t receive any treatment is becoming difficult to find really good days.  As a result, Megan is acutely aware that these last five cycles (15 weeks) are going to be a battle.

On Monday, Megan went to CDH for her first treatment of cycle #8.  She receives two drugs in week one, but since she struggled so much during cycle #7, her medical team decided to reduce one of the chemotherapy drugs by 25% in hopes it would help her make it through the next 15 weeks.  After a five hour stay, she completed her infusions and came home for her usual long post-chemo afternoon nap.  Monday night she actually didn’t feel too bad, but on Tuesday night, it already started to hit her.  This current chemo cocktail gives her excruciating bone pain, as well as very painful neuropathy all over her body.  It gets to the point where you cannot even touch her skin without her pulling back in pain.  The bone pain seems to centralize in her neck, back, and especially in her legs.  She can’t even walk from the couch to the bathroom without tears in her eyes.  She also is really suffering from shortness of breath.  She has had multiple scans which show her lungs are clear, but just getting dressed in the morning has her gasping for air.  Of course, the gastro issues are a continual source of discomfort, but she has just learned to live with that.  Wednesday, Thursday, and most of Friday were the same as she just struggled to function.  The only relief she seemed to find was either sleeping, or cuddling with her ever-present sidekick Willow (a.k.a. Boo Boo Kitty).

On Friday, I was really starting to get worried because we had big plans for Saturday.  Each year we try to go to a University of Wisconsin football game and then visit with Kenzi.  When I got the tickets, I told Megan that she didn’t need to worry about going this year that I would just ask someone else.  Needless to say, that didn’t go over very well, because Megan said there was no way she was missing the chance to see her sister.  All week, Deb and I kept making sure she knew that if she needed to back out, that was fine…and each time, Megan would tell us that she was going.  She felt miserable on Friday night and went to bed at 7:30 p.m., so on Saturday morning, I asked her one more time if she was sure she felt well enough to go.  Once again, she stared me down with those determined eyes and said she was going…and at that point, I knew better than to ask again.

We took off for Madison at 11:00 a.m. for the 3:00 p.m. game.  Deb was generous enough to not attend the game so she could be available to pick Megan up if she needed to leave.  Walking to our seat, Megan was really struggling to breath, but we took our time and made it 15 minutes prior to kick-off.  Somehow, in the sell-out crowd of 80,000 raucous people, Megan and Kenzi were able to text message general locations and we found each other from across the stadium.  We saw an awesome game as Kenzi’s Badgers pulled out a 24-22 victory over Iowa!  I think Megan’s favorite part was watching the marching band at halftime, but she did enjoy the game.  By the fourth quarter, her neck and back were killing her and she was completed gassed…and we still had to make our way back to Deb and the car.  Somehow, Deb made her way right next to the stadium, but by the time we walked there, Megan was in tears from her legs hurting and from not being able to breath.  I know if I were in her spot, I would have sat there until someone brought be a wheelchair…but once Megan is determined to do something, no one can stop her.  Although she was exhausted and hurting, she quickly gathered herself before we picked Kenzi and her friends up at their apartment and headed to supper.

It was so good to see Kenzi, Nick, Ellyn, and Jonah and we had such a good time at supper!  Our visit with Kenzi was way too short, but she will be home for five days at Thanksgiving, which will be awesome!  Megan is so excited that her play partner will be home soon 🙂

After Saturday’s festivities in Madison, WI, Megan was pretty worn out this morning and didn’t get out of bed until 11:30 a.m.  As the day progressed, she started to get her second wind.  She even felt well enough to help her mom grade some papers 🙂

On Monday morning, Megan gets to celebrate Veteran’s Day by heading back to the CDH clinic for her week two treatment of cycle #8.  The harsh reality is that for the next 15 weeks, the cumulative effects of chemotherapy are going to continue to haunt Megan.  However, somehow…someway…Megan will find a way to persevere, because that’s just what she does.  Cancer is such a staunch opponent…but there is just no quit in Megan.  She is so determined to not only win her own personal battle, but to wipe childhood cancer away once and for all.

“You may see me struggle, but you will never see me quit.”

Until next week…

Answering the Call

When Megan initially relapsed in February, 2016, she started to become aware of the sad lack of progress that has been made in treating childhood cancer.  She learned that over the past 50 years, the survival rates for stage 4 Alveolar Rhabdomyosarcoma (ARMS) have remained unchanged.  She learned that childhood cancer is the leading cause of death by disease in children.  She also discovered that over the past 20 years, only two new drugs have been approved by the FDA specifically to treat childhood cancer, and that during that same time, hundreds of new drugs were developed to treat various forms of adult cancers.  She found out that if her mom and dad had ARMS when we were her age, we would have been treated with nearly the same treatments she has received. She learned that the big pharmaceutical companies didn’t want anything to do with childhood cancer because the disease was not viewed as beneficial to their shareholders.  She also found out that of the roughly $5 billion the Federal Government allocates for the National Institute of Health, less than 4% of that money is dedicated towards research specifically geared towards the treatment of childhood cancer.  The more she read, the more upset she became.  She not only became upset about her own situation, but more importantly, she became even more sad about the plight facing so many of her cancer fighting friends.  At that point, she had a decision to make.  She could turn her anger inwards, becoming angry and self absorbed in her own situation…or she could turn her sadness and anger into a drive and passion to make a difference.  As a person recently said in regards to Megan…she received a call, and she decided to answer it…and as a result, I firmly believe a big change is on the horizon.

Readers of this blog know that Megan found a very promising research project being conducted by Dr. Walterhouse at Luries Children’s Hospital.  Megan discovered that he was trying to determine why ARMS cells become resistant to chemotherapy.  This was very promising research because although ARMS usually responds well to chemotherapy, relapses tend to be very common.  When Megan first got connected with Dr. Walterhouse, she decided she wanted to raise $10,000 to support his research.  Well…the combination of Megan’s determination and passion along with the incredible generosity of so many people and organizations, resulted in Megan raising $181,000 to support this research.  At the same time, she partnered with Ivory Ella to raise another $45,000 to support childhood cancer research.  Unfortunately, Dr. Walterhouse decided he had to close his lab in order to continue treating his patients.  He very kindly called Megan personally to tell her the news, and although Megan was devastated, she understood why he was forced to make such a difficult decision.  Doctors who are researching childhood cancer have to spend so much time fighting for funding that it leaves very little time to treat their patients.

After Dr. Walterhouse closed his lab, Megan has continued raising funds for two other childhood cancer research projects going on at Luries, but her passion is to eventually find another project specifically focused on ARMS.  Through her research, she has discovered more sobering news.  There are so many promising drugs out there that have been effective in the lab and are just waiting for funding to go to clinical trial.  When she talks to these doctors from all over the country, they are so excited about potentially partnering with Megan because they are so desperate for funding.  They all believe in what they are doing, and are longing for the chance to get their drug to clinical trial and save the lives of these kids.  It’s really unbelievable that the answer for these kids could be just sitting in the lab and never see the light of day because we do not have the funding for a clinical trial.  We have learned that a full clinical trial for one drug can require more than $10 million in funding…and with none of that funding coming from the pharmaceuticals and little to nothing coming from the Federal government…these doctors rely on grants from private philanthropic organizations.  When Megan first became passionate about childhood cancer funding, she went to meet with all of her State and Federal Representatives and Senators, but since then, she has learned that her attention needs to be focused on partnering with these private philanthropic organizations, because they are the lifeline for the limited funding that is available for childhood cancer research.

Luckily, Megan recently made a contact with a representative of the Gateway for Cancer Research Foundation, which has donated over $80 million to clinical trials to fight cancer.  She has been in contact with them about potentially funding a promising clinical trial that is similar to what Dr. Walterhouse was working on.  As she continues her conversations with them, Gateway invited her to their annual fundraising Gala held in Schaumburg.  It was a phenomenal event and Megan had a blast!  Most importantly, the event raised $4.2 million for cancer research!!!  Megan is sure hopeful she can convince them that a significant portion of that money should be allocated to find a cure for childhood cancer.  Here are a few pictures of last night’s Gala where Megan was really excited that she got to meet Ce Lo Green.  She was also happy that our neighbor, Makenna Emerson, was able to come to the Gala with her.  It really was a fantastic evening filled with emotion and passion for everyone in the cancer community.

This is Lauren, who is the representative from Gateway that Megan initially connected with.

This is Megan with Ce Lo Green and his wife.  He was hilarious and he put on an awesome performance at the event!

This is a picture of Megan with Tony Vincent, who was on Season 2 of the Voice.  He performed an incredible set of Queen cover songs.  He is one talented singer!

This was week #3 of Megan’s current treatment cycle, which means she had the week off from treatment to give her blood counts a chance to recover.  Although she didn’t have treatment, she still had to go to CDH on Wednesday for her blood work.  Her doctor also wanted her to get a hida scan to check her gall bladder function.  Megan is still suffering from daily gastro issues, and although it all could be related to neuropathy from her chemo treatments, her doctors want to make sure and rule everything else out.  Here she is on the bed waiting for her scan.  She had her hat and coat on until the last second because she was freezing 🙂

Today, Megan was excited because her good friends Emma and Ava Blaser were coming over.  Mike Gillette, who is the organizer of the annual Curefest event in Washington, D.C., contacted Megan because he wanted to interview the girls for a project he is working on.  As I type this post, he is currently conducting his interview with them in our kitchen.  Megan always loves to see the Blaser girls, and she was happy to help Mike out with his project.

Tomorrow, Megan heads back to the CDH clinic for her first treatment of a new three week chemotherapy cycle.  She will receive two different chemotherapy drugs, which means the process starts all over again.  Today, you would never know that Megan is headed back tomorrow morning for more treatment, more misery, and more recovery.  Her positive attitude and zest for life continue to amaze me. As I wrote earlier in this post, Megan has received a call, and she has decided to answer it.  That’s bad news for cancer!!!  Until next week…

A Dose of Reality

Anyone who has been around Megan is aware of her infectious smile; her passion to cure childhood cancer; her steely determination to win her personal battle; and her loving heart.  Through all of the mental and physical hurdles she has faced, somehow her positive attitude continues to shine through.  Over the past five years, there have been so many times when I worry that she makes childhood cancer look too easy.  She has become a master at masking the physical pain when necessary because she never wants to worry those around her.  For public appearances, she finds a way to wear a smile on her face and greet everyone around her with a kind hello, only to virtually collapse from exhaustion at the end of the event.  When people ask how she is feeling, she finds a way to put aside the mental anguish she might be going through and tells everyone she is doing well.  Many of Megan’s cancer-fighting friends have mastered the same skills as they publicly advocate for childhood cancer awareness and funding even though they are silently suffering themselves.  Despite the positive public faces Megan and her brave friends put on childhood cancer, make no mistake…this fight is brutal.  I am always reminded of this when Megan sees the St. Judes Children’s Hospital advertisements on television where the screen is filled with cute, smiling bald kids.  She gets so upset because she believes those ads send the wrong message about childhood cancer.  She worries that if people don’t understand the true story, then the disease will never get the attention it deserves.  Unless people know the raw, harsh truth, childhood cancer will never get more than 4%.  So let me take you through a typical week of treatment for a child fighting childhood cancer.

Megan received this week’s treatment on Monday morning.  I am always amazed at Megan’s attitude on the way to her treatment, because you would never know that she is about to go through misery for the rest of the week.  She usually talks a mile a minute for the hour and a half car ride while controlling the radio to make sure her favorite songs are playing.  Once we get to the CDH clinic, she is met by a nurse who immediately accesses her chest port with a needle that is about an inch long.  At first, being accessed used to really bother Megan, but now she is so used to it that it really doesn’t get to her..especially when she is accessed by the expert nurses in the CDH clinic.  After her bloodwork, she then gets a steroid infusion meant to offset some of the side effects of chemotherapy.  She hates the steroid because she believes it has made her gain weight, and it also makes her feel flush for about two days.  You can always tell when she receives the steroid because her cheeks get rosy red, but it is very uncomfortable for Megan because she says it feels like her skin is on fire and she can’t cool it off.  After the steroid, she then receives two different chemotherapy infusions.  For each infusion, the nurses are forced to wear protective gowns and eyewear because the chemotherapy drugs are so toxic…yet that’s what we put in our kids’ bodies.  Megan always finds it ironic that the nurses are forced to wear protective gear as she sits there waiting for that same poison to be infused throughout her body.  After about five hours, her treatment is over and we head home for what she knows will be a long week.

The day after treatment is usually not that bad for Megan.  On Tuesday, she is mostly dealing with the side effects of the steroid, which is primarily skin irritation.  On this same day, she also starts her daily Neupogen injection, which is meant to help her white blood cell counts to recover.  Chemotherapy causes her white blood cell counts to drop dramatically, which makes her extremely susceptible to infection.  We have been so fortunate that Nurse Kortni lives next door and usually comes to give Megan her shot.  If Kortni has to work, then Nurse Dawn is always available when we need her.  The combination of chemotherapy and Neupogen really starts to hit Megan on Wednesday.  Although she has learned to manage the nausea, she is yet to find a solution for the severe bone pain she experiences.  It gets to the point that she is in tears from the constant pain in her neck, back and legs…and there is really nothing that provides her any relief.  Seeing her in such constant pain is so tough, and it is even more difficult knowing that she will be going through it for the next three days.  She also becomes very short of breath as even walking to the bathroom has her gasping for air.  Thursday and Friday are a carbon copy of Wednesday, but Saturday evening, we know she will start getting some welcome relief.  By Sunday, she is still tired and a little short of breath, but at least the bone pain is gone and she is actually able to function.

The above summary of Megan’s typical treatment week doesn’t even take into consideration the constant mental battles that she fights.  When the after-effects of her chemo treatments are at their worst, she starts to doubt whether she can complete this current treatment plan.  She openly questions whether her body will allow her to continue with these treatments, which obviously scares her.  She fights off panic attacks when she is so short of breath and can’t seem to catch up.  Every ache and pain brings with it a fear that her cancer has returned.  Every little fever carries the fear that she will be hospitalized for three days for a series of antibiotics to protect her from dangerous infections.  I know she worries about her future as all of her friends are off to college preparing for the rest of their lives.  There are so many times that I know she feels like cancer has imprisoned her.  As I have said many times, the physical toll of cancer is devastating, but it pales in comparison to the mental battle these kids fight every single day.

Megan and her friends might make it look easy, but childhood cancer is anything but easy.  It is a merciless fight that I would not wish on anyone.  That’s why Megan is fighting so hard to raise awareness and funding for this disease.  She is determined that no more kids have to experience the nightmare she has been through for the past five years.  When you have a child living this disease, you become painfully aware that these brave kids deserve so much better than our country is currently giving them.  Their disease gets no attention from the big pharmaceutical companies because they don’t see these kids as profitable.  As a result, these kids have to rely on our Federal government for research funding, but our government officials believe they are only worth 4% of all funding made available to study cancer.  Our country has made such amazing progress with so many types of cancer, yet the survival statistics for many childhood cancers remain the same as they were 50 years ago.  Today, seven more kids passed away from childhood cancer, and unless we do something different, seven more will pass away tomorrow, and seven more the day after that.  Today, 45 parents heard the devastating news that their child has cancer.  What are we going to do for their kids?

This battle is so hard, yet Megan continues to fight it with an unwavering grace and determination.  Sometimes she makes it look too easy, but its important to remember that this fight is an epic battle filled with physical and emotional obstacles that most of us could never imagine, let alone endure.  Thankfully, Megan gets this next week off of treatment to give her body a chance to recover before she starts the process all over again.  Although the mental battle is always there, this week will be a welcome respite from the daily physical grind.  I know Megan plans to make the most her time away from these toxic drugs.  That infectious smile will be looming large this week, which is her way of letting cancer know that although it is a formidable foe, it is no match for Team Megan.  Until next week…