Taking it Slow and Easy

When your child is fighting cancer, one of the coping mechanisms you have to possess is the ability to take each day as it comes.  It is far too overwhelming to look ahead, because the future is just so uncertain and scary.  Instead, you learn to treasure each day and all of the little beautiful moments that present themselves.  When your child is fighting stage 4 cancer, it’s not about looking forward to graduating from high school; instead, you celebrate just feeling well enough to make it to school on that particular day.  It’s no longer looking forward to the next birthday; it’s about being thankful that she is not in treatment today.  It’s not about wondering what career she will have in the future, it’s about being thankful that we don’t have to worry about the results of another set of scans for another six weeks.  Over the past four years, our family has followed Megan’s lead and become much better about living in the moment and seeing each day as the blessing that it is.  However, now that Megan has defied all of the odds and is still fighting four long years later, some life decisions are all of the sudden upon her.  As she tends to set the example for us, we are once again trying not to worry and following her lead as she takes things slow and easy.

My wife and I are both educators, so we are strong believers in the value of an education.  When Megan was first diagnosed, there were so many thoughts that rushed through our minds.  First and foremost, we were focused on Megan’s treatment, but when she responded so quickly to treatment, I started to worry about her education.  As is customary, Megan straightened me out quickly by letting me know that her sole focus was on beating cancer and everything else was going to have to take a backseat until she won her battle.  As a result, we really were unconcerned about school for the first three years of her treatment.  Coal City Middle School and Coal City High School were both awesome about working with her, and they did their best to help her stay on track, but eventually the treatments and the resulting absences became too much to overcome.  Although she picked up a credit here and there, she was remained very far behind her peers.  As her senior year came, she all of the sudden started thinking about graduating with her class, but taking the traditional route of classes at CCHS was just not going to allow her to reach her goal.  Luckily, she got hooked up with a special program out of Joliet junior College that allowed her to take her classes at her own pace in the evening.  In typical Megan fashion, she got after it and last week celebrated the completion of her last class far ahead of schedule.  Now she has completed all of her requirements for graduation and will be graduating with her class come this may.  After her final class, we celebrating with a well-deserved strawberry milkshake from Steak-n-Shake 🙂

Now that Megan has completed her classes, she has the rest of the semester to recover both physically and mentally as she starts to think about the rest of her life.  After the completion of her proton radiation treatments, she still has to get scanned in mid-March, so it is difficult to start anything too intense until she gets the results of these scans.  Megan’s body and mind have been so abused over the past four years that she also wants to focus on her physical and mental health.  As she explained in her recent Facebook post,

Now that I have finished high school I am taking things slow and easy. I am not taking any college classes right now as I am trying to focus on myself and my health both mentally and physically.

She is still working at the dance studio two nights a week, and she is also actively seeking out babysitting jobs.  Since she is available during the day, she is hoping that there are people who could use her services once or twice a week.  Megan loves little kids; especially babies, so if you know anyone who might need some help, be sure to comment on this post and Megan will get in touch with you.  I sincerely hope that cancer can give her a break long enough to let her enjoy this reprieve from the stress of treatment, school, and preparing for the rest of her life.  I’m pretty sure she deserves it.

Although we all really enjoyed having Kenzi home from college for the holidays, I think Megan was the happiest to have her home.  They hung out together most every day, which meant Megan was never really alone in the house.  They went shopping, out for coffee, watched movies, cooked together, and just generally enjoyed each other’s company.  However, Kenzi’s winter break couldn’t last forever so last Monday it was time for her to head back to Madison, WI.  Although she doesn’t start class until January 22, she needed to get back early for her new job and to take care of some things at school.  We are so proud of Kenzi and everything she is accomplishing at the University of Wisconsin, but we sure do miss having her at home with us.  The first thing Megan said after Kenzi left was, “Well, what am I supposed to do tomorrow morning?”  As always, Megan is adjusting quickly and they still Facetime each other everyday.  Here are a few pictures I took just before Kenzi headed out the door.

Last September, we took Megan to Curefest, which was a weekend in Washington, D.C. dedicated to raising awareness for the drastic need for increased funding for childhood cancer research.  Due to this lack of funding, our country has made zero progress in the last 50 years in the survival rates for Stage 4 Alveolar Rhabdomyosarcoma!!!  I have no idea how that is acceptable in a country as wealthy and advanced as ours.  While at Curefest, Megan met some amazing people and established some lasting friendships.  One such friendship was with an incredible young cancer survivor named Ava.  Ava and her sister Emma are both accomplished dancers who both performed on the Curefest stage.  Since Curefest, Megan, Ava and Emma have kept in touch and this weekend Megan stayed with them in Chicago as they competed in a dance competition.  Megan had a great time as she really enjoys hanging out with Ava and Emma, and she also loves dance.  here is a picture from her weekend in Chicago.

Emma, Megan, Ava and another friend she met in Chicago.

As she awaits her next scans, Megan is continuing to work on her physical and mental health.  Cancer has been beating her down mercilessly for four years, so it is going to take time for her to recover.  Right now, ten minutes on the stationary bike seems like an eternity to her, but she is still doing it every day.  There are still those moments when the gravity of her situation takes a toll on her mentally.  However, with her hard work and determination, I’m sure her physical and mental health will improve by the day.  Like Megan said, the key is to be patient and take things slow and easy.  Cancer is a beast, but Megan is more determined than ever.  Cancer doesn’t stand a chance!!!

 

Bittersweet

This past week was a big one for Megan as she completed her proton radiation which was necessary to treat the current tumor she has in her chest.  This was Megan’s 6th go-around with radiation, so by this point, she pretty much knows what to expect.  I remember when she completed her first round of radiation, which took place in the summer of 2015.  She was concurrently receiving chemotherapy, so it was a trying time.  When she finished, I remember all of us breathing a huge sigh of relief because we knew that once she completed her 54 week chemotherapy protocol, she would officially be in remission and ready to regain her life.  However, as we have learned over the past four years, cancer doesn’t give up easily.  Although Megan is still the toughest teenage girl I have ever seen, cancer is a formidable foe.  It’s grasp is so strong, and even when you believe you have finally broken free, cancer finds a way back into your life.  Megan still firmly believes she is going to win, but she has learned to curb her enthusiasm when she reaches these milestones.  I think she has been disappointed so many times now that she is afraid to let herself ever really believe the battle has been won.  She doesn’t want to let her guard down, because she doesn’t want to give cancer any indication that her resolve has weakened.  Living in such fear is no way for any teenager to live his/her life, but it is the hand that all childhood cancer victims have been dealt.  As a result, achievements like completing another round of radiation are still celebrated, but there is always that bittersweet feeling that follows.  It’s hard not to wonder “What next?”.

Megan’s final treatment of this 14 day proton radiation cycle was on Wednesday.  Throughout her treatment, she had been handling things pretty well.  Her skin was only mildly burned in comparison to some of her previous treatments.  She was very fatigued, but that comes with proton radiation treatments.  It was not unusual for her to come home and take a four hour nap following her treatments.  The biggest issue that had started to develop was some severe acid reflux and heartburn that was caused by the burning at the base of her esophagus.  In order for the proton beams to reach the entirety of the tumor that is wrapped around her aorta, they had to set the beam where it would clip the bottom of her esophagus.  For the first two weeks of treatment, it didn’t cause too much of an issue for her, but for the past week, it has gotten pretty rough.  Her doctor prescribed a medication to help the issue, but it has actually gotten much worse since her treatment ended.  Once radiation concludes, the effects still worsen for about a week to 10 days following treatment.  For the past couple of days, Megan has hardly been able to eat anything without experiencing severe discomfort.  In fact, early Saturday morning her pain got so bad that it caused her to throw up.  For some kids, throwing up might seem traumatic, but Megan has been down that road so many times from her chemotherapy treatments that she just rinses out her mouth and heads back to bed.  We are hopeful that she finds some relief within the next few days.

As always, the professionals at the proton center in Warrenville were awesome.  On Megan’s last day of treatment, the Child Life Specialist, Aileen, made Megan feel very special.  She and Megan have known each other for four years, so they talk about all sorts of things.  Aileen knows that Megan loves baby goats, so she bought her a little stuffed animal baby goat that Megan thought was pretty awesome.

Aileen also gave Megan a “Love Your Melon” hat and a very nice congratulations card.  Here is a picture of the two of them as Megan holds her completed radiation calendar.

When the kids finish their treatments, the proton center has a room dedicated to the kids where they put their handprint and the date they completed their treatment.  Unfortunately, I believe Megan has the record as she now has her fourth handprint on the wall.  Her first handprint is a little faded, but you can see that it is dated 2015.

Her next two handprints are close to each other on the wall.  She put them next to her friend Olivia’s handprint.

Here are some pictures of Megan completing her fourth handprint (her other two radiation treatments were not proton radiation, so they are not memorialized on this wall).

 

Of course, on the way home we had to celebrate with a coffee drink and a cake pop from Starbucks 🙂

We have been so happy with the care Megan has received at Central DuPage Hospital.  Although we were devastated to see Dr. Salvi retire at the end of 2018, we have complete trust in Dr. Hayani and Dr. Kar.  Also, we feel extra secure knowing that Dr. Walterhouse at Luries Children’s Hospital is consistently consulting on Megan’s case.  Although Megan loves the entire medical team at CDH, she has been talking more and more about getting a second opinion just to make sure we have not left any stone unturned.  To be honest, Deb and I felt the same way.  Although I have read pretty much everything the Internet has to offer on the treatment options for stage 4 Alveolar Rhabdomyosarcoma, we all felt the need to bounce her case off of another medical professional.  Through my own research and the connections we have made with people from all over the country, I am pretty up to speed on all of the doctors who are considered to be at the head of the field when it comes to stage 4 ARMS.  The unique thing about stage 4 ARMS is that because funding for treatment is so limited, the doctors across the country readily share their findings with one another.  As a result, the treatment Megan has received at CDH looks no different than what she would have received at Mayo Clinic, Houston, LA or St. Judes.  The treatments are standard protocol.  However, even knowing that, we felt like we needed to be sure.  Therefore, we sent all of her records to Dr. Arndt from Mayo clinic just to make sure.

On Wednesday afternoon, I received a call from Dr. Arndt who had finished reviewing all 100+ pages of Megan’s medical records.  She was so very kind, but what she had to share with us was exactly as I had expected.  She said that when it comes to stage 4 ARMS, treatment options haven’t changed much in the past 30 years.  It was a jolt to hear her say that our country has made no progress in the treatment of stage 4 ARMS in the past 50 years!!!  How is that even possible in a country as advanced as ours?  We would never accept such a lack of progress with treating heart disease, yet there is no sense of urgency when it comes to our children.  I just don’t get it!!!  She also said that Mayo clinic had nothing to offer Megan that she had not already received from her doctors at CDH.  She also reiterated what we already knew, which was that Dr. Walterhouse is the best there is when it comes to dealing with Megan’s type of cancer.  So although it was good to hear that we are getting Megan the best possible treatment, it was sobering to get affirmation that her treatments options have been exhausted.  As long as her tumors continue to come in treatable locations and continue to grow slowly, surgery and/or radiation will be her treatment options.

I knew hearing what Dr. Arndt had to say would be tough on Megan because she was hoping for something new.  Although I knew it was not what Megan wanted to hear, as always, she handled it like a champ.  I could tell she was a little down, and who wouldn’t be if you just found out that you had no research-based treatment options left.  However, the next morning, I was amazed when I read the Facebook post she had published the night before.  Her post read…

Today I finished radiation for the 6th time. My skin is burned for the 6th time and my body is tired for a 6th time. My cancer is not backing down but neither am I. This is going on the 5th year of me fighting this battle and I am determined to win. Today I was told I don’t have any new treatment options left but to me that doesn’t stop me. Today was rough and I shed my tears but now I am ready to kick this cancer out of my body. It’s been too long and this is the year. 2019 will be the year I beat cancer. I will prove my doctors wrong and win. Thank you to everyone for the prayers and all of the love. Childhood cancer needs more funding so kids like me don’t have to be told there are no treatments left. Thank you for fighting with me. #childhoodcancer #rhabdomyosarcoma #iwillwin

She also posted this picture.

Given all that she has been through, her resolve is still as steely and determined as ever.  Make no mistake, Megan has her moments where the fight gets the best of her.  There are times when the tears flow, and she is definitely entitled to those tears.  However, given all that she has experienced over the last four years, and even hearing for certain that her treatment options are exhausted, she still has the courage to let everyone know that the fight is far from over.  Cancer hits so hard, but somehow Megan just keeps getting up off the canvas to continue the fight.  It’s times like this week that I really don’t know how she does it.  I could only hope to have a fraction of her strength.

It was a bittersweet week, but that’s pretty much the norm with childhood cancer.  Until next week…

 

This Has to Be the Year

Megan has officially started the 5th year of her battle with Stage 4 Alveolar Rhabdomyosarcoma.  She was officially diagnosed on December 30, 2014, and over the last four years she has endured more physical and emotional trauma than any child should ever have to experience.  The physical toll that fighting cancer takes on the body is immeasurable and as close to torture as I could ever imagine.  Due to inadequate attention and funding for childhood cancer research, Megan has been treated with virtually the identical treatments I would have received when I was her age…and I’m 51 years old!!!  The chemotherapy drugs used to treat our children are so toxic that the treatment of pediatric cancer is the art of finding that sweet spot where the body takes the maximum doses of chemotherapy to kill the cancer cells while at the same time making sure the chemotherapy doesn’t kill the child.  In March, 2015, Megan came frighteningly close to reaching the point where the chemotherapy drugs almost took her life as her reduced immune system caused her to suffer from sepsis which put her in intensive care for two weeks.  As we start 2019, I am becoming more and more hopeful that people are starting to listen to the passionate and determined voices of these kids.  Megan has joined kids across the country who are advocating directly to legislators in an effort to educate them and force them to listen to their plight.  Throughout the four years that Megan has been fighting her personal battle, I truly believe we are starting to see a slow change in regards to the attention paid to childhood cancer…but there is still so far to go.

In 2015, the National Cancer Institute (NCI) budget was $4.93 billion, and it was reported that that childhood cancer received only 4% of that sum or $198 million. Given that the U.S. Federal budget for FY19 was over $4.4 trillion, it seems ludicrous that only $198 million was allocated to funding childhood cancer research.  I cannot think of a bigger bang for the buck than finding a cure for childhood cancer. In 2018, it is estimated that 15,590 children and adolescents ages 0 to 19 will be diagnosed with cancer and 1,780 will die of the disease in the United States.  That’s 1,780 children in one year!!!  How is that acceptable?  Why aren’t our politicians focusing on this tragic loss of life?  I can guarantee you that with the brilliant scientific minds in our country, making a national commitment to funding childhood cancer would result in a cure.  We just have to decide the loss of life is unacceptable and make it a national priority.  If our children are this country’s most precious resource, how can we not make curing childhood cancer a priority? 

Megan and her fellow childhood cancer fighters are determined to make a difference.  They have marched on the Capital building in Washington D.C.  They have met with Federal legislators.  They are even raising the funds necessary to fund the research that might actually save their lives.  Thanks to the generosity of so many people and organizations, Megan has raised over $138,000 to fund important childhood cancer research being conducted at Luries Children’s Hospital in Chicago.  But is it right in a country as advanced as ours that sick children are forced to raise money for their own treatments?  We have to do better, and I really believe that these kids are going to finally make it happen.  Their stories are both tragic and powerful, which is a combination that is difficult to ignore.  My wish for 2019 is that no more children or their families will have to travel the path we have been on for the past four years.  These kids deserve so much better!!!

Although Megan is in the midst of her proton radiation treatments, we still found ways to ring in the New Year.  Megan is currently closing in on the end of her proton radiation protocol that is meant to treat the current tumor she has in her chest.  This current tumor is her third relapse, which has resulted in her sixth bout of proton radiation.  Altogether, Megan has had over 100 radiation treatments during the past four years.  Originally, her radiologist thought she would need about six weeks of treatment, but after the CT scan, they discovered that they could attack her tumor from two different points each day.  As a result, each time she goes in for treatment, the proton beam hits her once from the back and once from her right side.  Because she is getting two treatments per day, her time was cut in half.  That was great news because it means she will receive her final treatment this Wednesday!  To date, the side effects from treatment have not been too bad.  Her skin is only mildly irritated, which is far better than in the past when she had burns so bad that her skin would turn black at the point of treatment.  She is very tired after treatment, which is a very common side effect and results in an afternoon nap most every day.  This picture is pretty much the norm on the drive home from treatment.

…and the nap usually continues on the couch when she gets home, but of course, Willow always joins her 🙂

\The worst issue she is having is irritation to her lower esophagus.  The proton beam is clipping the bottom of her esophagus which is causing her some extreme acid reflux when she eats.  Her doctor put her on a new medication yesterday, which seems to be helping a little bit.  Unfortunately, the doctor said that her symptoms will probably worsen for about 10 days after the conclusion of her treatments.  Following the end of treatment, she has to wait about two months before they can get an accurate scan, so we will be in a holding pattern for awhile.  The waiting is awful, but it is a fact of this battle that we have all learned to deal with.  I really don’t know how Megan does it, but she has an uncanny ability to live in the moment and worry about tomorrow when it comes.

Kenzi is home from college for the holidays, which has been awesome!  Last weekend, we were talking about spring break and came to the sober realization that the University of Wisconsin break is different from our spring break.  Prior to Megan’s recent relapse, we had planned a trip to Cancun over the winter break, but we ended up canceling due to Megan needing her radiation treatments.  Megan was upset that Kenzi couldn’t go, but we didn’t worry about it much because spring break was coming up soon.  However, when we realized that our family would not be able to travel together over spring break, we also discovered that Kenzi would not be able to travel at all until the summer.  With some prodding from Megan and I, Kenzi and Deb went on a last minute mother/daughter trip for five days in Cabo.  I was so happy that the two of them were able to get away together and de-stress for a few days.  Kenzi heads back to school on January 13, so this was a great little getaway for her.  Megan and I picked then up at the airport late Friday evening.  Here is a picture of the two of them in Cabo 🙂

While Kenzi and Deb were gone, Megan and I traveled to her treatment everyday, but we still managed to fit in some fun.  We went to a movie/dinner theater to see the new Mary Poppins movie.  We also went bowling one night, and managed to watch a movie together at home every evening.  We had a great time!

We also kept track of Kenzi’s new hedgehog while she was gone 🙂

I hope everyone had a very Happy New Year!  Here’s hoping that 2019 is the year that Megan is finally able to put this four year nightmare behind her.  More importantly, I hope that 2019 marks the start of a renewed national commitment to our children where we put an end to pediatric cancer once and for all.  Our kids certainly deserve it!!!  Until next week…

 

You Gotta Believe

When you have a child fighting cancer, every holiday takes on a little extra special meaning.  Cancer forces you to see things through a new lens of appreciation where you never taking anything for granted.  I will admit that the Christmas holiday is always a little tough for our family because it was Christmas day four years ago that we first discovered the tumor on Megan’s arm that started this long and arduous journey.  Because our family has that memory etched in our minds, Deb and I work extra hard to make Christmas a very special day for the girls.  Based upon the love and joy our family shared on Christmas morning, I would say it was a rousing success.

Christmas morning also reminded me how important it was to believe.  When the girls were little, we tried so hard to make them believe in the magic of Christmas.  We would leave cookies out for Santa, and then that night after the girls went to bed, I would eat them making sure to leave some crumbs on the plate for them to see.  I would also write a thank you note from Santa with my left hand so they wouldn’t know it was me.  The look in their eyes on Christmas morning showed the magical powers of believing.  As the girls got older and Santa was no longer real to them, Christmas meant believing in something much more important.  It meant believing in the love of family and friends.  It meant believing in the importance of giving to others.  It meant believing in the power of love.  As we have experienced the last four years of Megan’s Journey, the importance of believing as taken on a whole new meaning.

As we celebrated Christmas morning in our home, we are focused on the belief that Megan is going to eventually win her battle with this evil beast.  Keeping that belief alive is more important than anything right now, because in this battle, you have to believe you are going to win.  You have to believe that you are too powerful for cancer.  You have to keep believing, because if you lose your will to win, you have lost the battle.  Thanks to Megan’s incredible determination and positive attitude (along with the amazing support from everyone on Team Megan), she has never lost her belief that she will ultimately come out of this battle victorious.  Of course there are moments when doubt creeps into her mind, but she has an uncanny ability to bounce back ready to fight another round.  I once heard it said that belief is an invisible power that comes from the mind and the heart.  After all she has been through over these past four years, Megan’s mind and heart are still as strong as ever.  If there was ever someone to believe in during this fight, it’s Megan.

Megan is currently in the midst of her 6th round of radiation.  This current treatment is a proton radiation regiment to treat the current tumor in her chest that is wrapped around her aorta.  Originally, we thought her treatment would be five to six weeks in length, but we have learned that her radiologist believes she will be finished on January 9!!!  That is great news!!!  So far, she is handling the radiation pretty well.  She has had minimal skin irritation, which is very positive.  She is having some issues with heart burn, which is something her doctor said to expect given the location of her radiation treatment.  She is usually very tired after her daily treatment, so late afternoon naps have become somewhat of a necessity for her.  However, it is refreshing to know that she has less than two weeks of treatment remaining.  Following her final treatment, it will be a couple months before the irritation heals enough to allow another scan.  In the meantime, we will be sure to celebrate her completing another leg of her journey.  You can’t enjoy today if you are worried about tomorrow, and today is far too valuable to waste.

The Christmas holiday was fantastic!  The best way to share our joy is through pictures, so here goes…

On the Saturday prior to Christmas, we were at the Bugg farm for our family Christmas. Here is the entire crew.

On Sunday, December 23, Kenzi and I went to Mundelein to pick up her new pet hedgehog. Here she is with Quilliam 🙂

Megan likes to hold Quilly as well 🙂

Christmas Eve came with a visit from Aunt Janet and Cousin Carly. It was great to have them with us over the holiday.

We also met Grandpa and Grandma Coope for Christmas Eve dinner at Aodake…Yummy!!!

Christmas day always starts with the traditional picture at the top of the stairs. This year, Sparky wanted in on the action.

Homemade cinnamon rolls and egg casserole are another Christmas tradition in our house.

No Christmas morning is complete without our annual visit from the Emerson girls 🙂

The Bugg family on Christmas Day.

We topped the week off with dinner at Uncle Julio’s with our awesome neighbors, the Emersons.

No dinner is complete without a chocolate pinata. Madison did the honors of breaking open the dessert 🙂

It’s been amazing week as we continue to celebrate the miracle of Christmas.  Here’s hoping that Megan’s Christmas miracle will come soon.  You gotta believe its going to happen!  Until next week…

 

 

Fighting to Stay Positive

Christmas day will mark the four year anniversary of when we first discovered the tumor on Megan’s left forearm.  I will never forget that moment as the Emerson girls were over for their traditional Christmas morning visit.  Megan was trying on a sweatshirt, which is when I saw the strange growth on her forearm.  Since it was Christmas morning, we tried not to make a big deal about it, but I was a little concerned.  Megan was in the midst of 8th grade volleyball, so I thought maybe she had hurt it bumping a volleyball or something.  As I look back on that day, it is obvious that Megan knew that something serious was going on with her body, but as a scared 13 year old, she was too frightened to ask.  The next day changed Megan and our family forever, because that’s when Dr. Jercinovic broke the news to us that she was sure our beautiful girl had some form of cancer.  Five days later, we found out for sure that Megan had stage 4 Alveolar Rhabdomyosarcoma and was going to be in for the fight of her life.  Hearing that your child has cancer is something I would never wish on any parent, because there is nothing that can prepare you for it.  There is also nothing that can prepare you for how your family’s life will change as you experience the roller coaster ride that is cancer.

Over the past four years, the high’s have been exhilarating as the support from Team Megan continues to pour in.  In many ways, traveling this journey with Megan has rekindled my belief in humanity, because there are so many good and caring people out there.  We have also watched Megan mature from an extremely shy 13 year old into a national spokesperson for childhood cancer who refuses to take no for an answer.  But while the high’s have been amazing, the lows are absolutely gut-wrenching.  There are no words to explain what it’s like watching your child suffer from the torture that is chemotherapy.  Nothing can prepare you for the mental anguish that a teenage girl with cancer has to endure.  There is no preparation to watch helplessly as your child is fighting for her life by the minute while in intensive care from an infection caused by a compromised immune system due to chemotherapy.  This roller coaster ride can definitely give you motion sickness if you let it…but there is one thing that has always kept us one step ahead during this battle, and that is Megan’s positive attitude.

Over the past four years, Megan has been through 90 weeks of chemotherapy, three surgeries, and over 100 radiation treatments to treat her original diagnosis and two relapses.  Through all of that, she has never wavered in her belief that she will one day finally beat cancer once and for all.  Recently, Megan learned that she has relapsed once again as she has a tumor in her chest that has wrapped itself around her aorta.  This third relapse has meant another proton radiation regiment that started this past Wednesday.  Megan took this news harder than she has in the past, because she is getting to the point where she has about had it.  Cancer is a persistent opponent and she is starting to wonder if the disease will ever give her a minute’s peace.  It’s completely understandable for Megan to have such feelings, and to be honest, I’m surprised she hasn’t had them more often in the past.  Although the last two weeks of multiple scans and diagnosis have been tough on her, she got her mind right in time to start her battle anew on Wednesday with her first proton radiation treatment.

Megan had proton radiation treatments on Wednesday through Friday of last week and she will start again the day after Christmas.  Although she was unhappy to be back under the radiation machine, she was thankful to get the process started instead of waiting until after the new year as she was originally told.  So far, her first three treatments have gone well, and although she has been very tired and her stomach is still giving her fits, overall she is doing as well as could be expected.  Unless you have experienced it yourself, none of us could ever understand the daily mental and physical grind that Megan is under.  Yet even given her tremendous burden, she is still laughing and singing every time we make the hour long drive to the radiation center.  I truly believe that to win this battle, attitude is everything.  Even though cancer continues to attack her over and over again, Megan still believes in herself.  As long as her mindset stays right where it is, she will defeat this beast once and for all.

The Christmas holiday started early at our house as Kenzi came home on Wednesday night from the University of Wisconsin for her winter break.  She finished her last exam at 7:00 p.m. on Wednesday night and was home by about 10:30 p.m.  She has had an amazing semester as she continues her studies with the goal of becoming a Speech and Language Pathologist.  She loves her coursework and could not be happier to be in Madison.  Once Kenzi got home and our family was back together, it felt like the holidays could officially start.

On Saturday, we traveled to the farm in Assumption, IL for the Bugg family Christmas celebration.  It was so good to see everyone, and we had such a great time.  I had the best intentions to take lots of pictures, but as usual, I got sidetracked.  However, I did get a few.

The girls with Aunt Amy.

The girls with Gina and her daughter Danielle.

Kenzi and Deb waiting for Santa to pass out some gifts!

Megan played Santa for the night 🙂

As readers of this blog know, our house is filled with three cats and a dog, all of whom have been tremendous therapy animals for not only Megan, but Kenzi as well.  Many people forget that although cancer is awful for its victims, it also significantly impacts the siblings as they are forced to watch their sister or brother fight for their lives.  During much of the last four years which were filled with long hospital stays and the many doctors appointments, Kenzi also found comfort in the pets who would keep her company when she was still in high school.  Although she has had a tremendous transition to college life, there are times where she still misses having a pet.  That’s why she decided to ask many of her relatives for money as her Christmas gift so she could purchase her new pet…a hedgehog! :). Today was the big day as we traveled 90 minutes north to the hedgehog breeder Kenzi found when she was conducting her painstakingly thorough research on the topic.  Here she is traveling home with her new pet, Quilliam (a.k.a. Quilly).

Christmas is right around the corner, and our family is so excited to celebrate with family and friends.  I realize that Christmas is a special holiday for many people, but when you have been through this journey, every holiday holds a little extra special meaning.  Merry Christmas to everyone!!!

 

Starting Another Chapter

Megan recently learned that the tumor located near her aorta has more than doubled in size over the past two months.  Because of the tumor’s precarious location, her medical team felt it was too dangerous to conduct a biopsy, and without a biopsy there is no way to know for sure that the growth in her chest is cancerous.  Also, given the fact that the tumor seemed to be growing so slowly, her medical team opted to monitor the growth.  However, given the results of her most recent scan that showed the tumor had started to grow more rapidly, her doctors determined that it was time to start treating the growth as a cancerous tumor.  The other complicating factor was that her latest scans showed that the tumor had started to wrap its way around her aorta, which left untreated could have dire consequences.  Last week, Megan completed another PET and brain MRI, which both came back showing only the one growth in her chest.  Although we were disappointed that the tumor had started to grow, we were thrilled that her scans showed she is only dealing with one tumor, which made radiation a viable option.

Due to a lack of adequate Federal funding to research more effective and less toxic treatments for childhood cancer, these kids have limited treatment options.  Megan has already been through the initial 54 week chemotherapy protocol that has shown to be the most effective against Alveolar Rhabdomyosarcoma.  During her first relapse, she went through another 36 weeks of chemotherapy, which is another standard chemotherapy protocol for ARMS.  Her second relapse was in her back, which they were able to successfully treat with proton radiation.  The reason we were so happy to know that this third relapse is isolated to one tumor is because there are really no research-proven chemotherapy options left for Megan.  Therefore, absent a clinical trial that she qualifies for, proton radiation is the only proven effective treatment option available to her.  That’s why we were holding our breath for the results of last week’s scan, because had they shown multiple tumor locations, the news would have much more challenging for Megan.  This is just another reason why Megan is so passionate about raising money for cancer research.  She doesn’t want to see any more kids go through what she has experienced over the past four years.

On Monday, Megan had an appointment with her radiologist at the proton center in Warrenville.  Originally, her doctors had told her that she probably wouldn’t be able to start her proton radiation treatments until after new years, which really concerned Megan and us.  Well…Megan and her mom can be very persuasive, because when they called me on the way home from Monday’s appointment, they said that her treatment would most likely get started this week.  To make that happen, Megan had to go to her original morning appointment at the proton center, and then go to CDH to meet with Dr. Hayani.  He wanted to give her another physical exam just to double check four areas that lit up slightly on the PET scan.  Luckily, he said he didn’t feel anything abnormal.  After that, Megan had to go back to the proton center to get another CT which they use to properly calibrate the proton radiation machine.  Although it was a very long and stressful day, it was worth it to get her proton radiation protocol started.

On Thursday afternoon, I received a phone call that they would be able to start Megan’s five weeks of treatment this Wednesday at 1:00 p.m.  She will receive treatment for 25 straight weekdays, which her radiologist believes will effectively treat her current tumor.  This will be Megan’s 6th proton radiation treatment schedule, and it has always been effective for her, so we are hoping that Wednesday is the start of history repeating itself.

Knowing that you are about to step back into the ring against a foe as mighty and evil as cancer can be overwhelming.  In order to keep her mind occupied, Megan did her best to stay busy this week between school, work and friends.  One of the highlights of the week was going to goat yoga with her friend Emma.  Yes…you heard me right…GOAT YOGA!!!  Readers of this blog know what an animal lover Megan is, so when she heard that there was such a thing as goat yoga, she was all in.  It was so nice of Emma to treat Megan to such a fun day on Saturday.  Here are a few pictures from her goat yoga adventure.

Kenzi is in the midst of her final exams at the University of Wisconsin.  She had one final last Tuesday and then two more on Saturday.  She has two more finals on Wednesday, which will end her semester.  To give her a little break after her two finals on Saturday, we all drove up on Sunday to pay her a visit.  Deb, Megan, Kenzi’s boyfriend Nick and I all headed out early this morning to take Kenzi and her good friend Ellyn to lunch.  We also brought her a care package with all of the meals she and Ellyn will need to finish out the semester.  It’s been a great semester for Kenzi, and she is working hard to finish strong.  We are so proud of her!!! It will be so good to have her home late Wednesday night for her winter break.  There is nothing better than having our family all together for the holidays.

Although Megan is the toughest teenage girl I have ever met, even the bravest of warriors experience moments of frustration, doubt and despair.  This past week started out rough for Megan as she was really down about having to go through treatment yet again.  She was questioning if this will ever end, because, in her words, the tumors just keep coming.  She was tired and not sure if she could go through treatment yet again…and who could blame her for having such thoughts.  Sometimes Megan makes this journey seem so much easier than it is.  Megan gets so frustrated by the commercials on television that show nothing but smiling, happy little bald children, because she says that such images do not portray the real story.  Of course these kids are brave, but they are also going through physical and mental torture on a daily basis, and to hide this reality from society can send an unintended message that fighting childhood cancer really isn’t that bad.  Sometimes, people need to see the raw truth before they are motivated to make a change and the truth is that fighting cancer is absolutely brutal.  It puts these kids through a mental and physical hell that you would not believe unless you saw it yourself.  It’s why we have to do better for these kids, because NO CHILD deserves to go through what they are going through as they fight for their lives.  So although Megan puts on a brave face, there are times like this week when this battle gets her down.  Fortunately, Megan has an uncanny ability to bounce back from the low times and get herself mentally prepared for the fight in front of her.  The time to feel sorry for herself is over and she is ready to fight.

It’s time to start another chapter of this journey.  Let’s hope it’s the final chapter of a story that ends with a glorious victory.  Until next week…

Perspective Is Relative

As I shared with friends and family Megan’s latest setback in her recovery effort, I began to reflect on the idea of perspective.  Megan and our family have been through a lot over the past four years.  There is nothing you can do to prepare for what it is like to travel this journey with your child.  After watching your child fight for her life for so long, your perspective changes on so many things.  The seemingly insignificant yet beautiful moments in life that used to pass us by with nary a thought are now treasured by our family.  When you don’t know what the future will bring, each holiday season is held close to our hearts.  The little inconveniences in life that may have caused angst in the past now slip by without much of an emotional reaction.  Life’s daily challenges that we may have obsessed over in the past don’t seem nearly as important anymore.  Cancer has changed our family’s perspective on life in immeasurable ways, and for the most part, those changes have been a good thing because we now place a greater value on what really matters in life–family, love, health and happiness.  We no longer have to decide whether the cup is half full or half empty, because instead, we are just happy we have a cup with something in it to drink.

This past week has been a whirlwind of activity following last week’s CT scan which showed that the tumor in Megan’s chest had more than doubled in size.  Her current tumor is very near her aorta, which made getting a biopsy nearly impossible.  We have known this tumor has been there for about the past five months, but her monthly scans showed that it was very static.  In fact, her PET scan from a couple months ago showed that the tumor was actually less cancerous than the previous scan, which was very encouraging.  Needless to say, we were not surprised her latest CT showed the tumor was still there, but we were disheartened to learn that it was starting to grow more rapidly.  In response, Dr. Hayani ordered a brain MRI and a PET scan this past week to make sure they had all of the baseline data necessary before determining a treatment plan.  If her scans showed no more cancerous activity other than the single tumor in her chest, then proton radiations seemed to be a viable option.  However, if the scans showed anything else, we would have to go back to the drawing board, because Megan has pretty much exhausted all of her chemotherapy options.  Due to the severe and long-term lack of funding for childhood cancer research, our kids are still being treated with virtually the same medications that I would have been treated with as a child.  It’s such a shame our country has not placed more of an emphasis on finding less toxic and more effective treatments for childhood cancer, but it is what it is.  That’s why Megan is so determined to raise awareness and funding so that future kids will not have to go through what she has over the past four years.  By the way, Megan is still taking donations to fund Dr. Walterhouse’s promising research being conducted at Luries Children’s Hospital in Chicago.  You can make a direct donation at her personal Circle of Friends fundraising page.  As Megan likes to remind anyone who will listen…when funding is so limited, every dollar matters!!!

On Tuesday morning, Megan had to be at CDH at 10:00 a.m. to check in for her brain MRI.  Since she has such bad claustrophobia (which stems from her first full body MRI that she received four years ago upon her original diagnosis that last over three hours), Megan has to receive her brain MRIs under anesthesia.  She has done this so many times in the past that she knows the routine.  She was very very happy to see her favorite anesthesiologist, and as usual, she went through the process like a champ.  Here is a picture of her before the MRI and then after as she enjoys a Fig Newton cookie 🙂

As I have explained before, for a cancer patient, “Scanxiety” is the worst.  It’s the severe anxiety that accompanies scan results.  Just imagine what it’s like waiting for scan results that in reality are determining your mortality.  Sometimes I think Megan handles the waiting better than her mother and I.  We were so relieved when Dr. Hayani called at about 7:00 p.m. that night to tell us that her brain scan was clear!!!  That was one hurdle cleared!!!

On Thursday morning, Megan had to be at the Cancer Center in Warrenville at 7:15 a.m. for her PET scan.  Once again, she has been through so many of these that she really doesn’t get overly nervous about the scan itself.  Upon arrival, she had her port accessed and then received the radioactive material that lights up during the PET scan.  After receiving the radioactive solution, she has to remain still for one hour.  After that, they take her to the PET scan, which takes about 40 minutes to complete.  Since she couldn’t eat prior to the scan, she was starving afterwards and wanted to go to one of her favorite breakfast places nearby, Buttermilks.  She was pretty happy when her breakfast arrived!!!

Luckily, Megan was scheduled to work at the dance studio on Thursday night, so she was able to keep her mind off the PET scan results, but Friday morning was tough as she went to school not knowing the status.  Dr. Hayani called at about 9:30 a.m. with the results.  He said that the tumor in her chest lit up brightly on the scan, which shows that it is cancerous.  Without a biopsy, we don’t know if it is a relapse of ARMS or a secondary cancer which is often the case as a result of the toxic treatments Megan has received over the last four years.  He also said there were four other spots that lit up a little bit, but at this point, those spots could be anything because they are so small.  This was the best news we could have hoped for because it means she is dealing with only the single tumor, which makes proton radiation a viable option for her.

Remember when I said that as you travel this cancer journey, your perspective changes?  Most parents would be rightfully devastated to learn that their child has a cancerous tumor in her chest wrapped around her aorta.  However, for us, that’s the best news we could have received!  Megan’s tumors have always responded to radiation, so there is no reason to believe that this one won’t respond as well.  It’s true that this is a third official relapse for Megan, but the positive news is that none of her relapses have been typical for ARMS.  Typically, an ARMS relapse comes back in the lungs and is very aggressive.  So far, Megan hasn’t experienced that and although she has a tumor in her chest, there is still reason to celebrate.  Like I said earlier in this post, it’s not about whether the cup is half full or half empty, because Megan still has water in her cup and she’s ready to drink it.

As expected, Megan is very anxious to get her proton radiation treatment started, so we expedited an appointment with her radiologist for early Monday morning.  Since Megan is her own best advocate, I have no doubt that she will make sure no grass grows under the tires.  By next week’s post, we should now what her proton radiation protocol will look like.

On Friday evening, Megan was so excited to attend the CDH Christmas party.  So many of those amazing professionals have become like family to us, so anytime Megan gets to catch up with them is very rewarding for her.  She was also so happy that her good friend Katelyn made the trip with her.  Here are a few pictures from the awesome event.

Megan with Katelyn after they made their own Christmas ornaments.

Megan was so happy to see her best buddy, little Ellie. We are thrilled that Ellie is doing so well. Megan thinks she is the cutest thing ever!!!

Megan with Dr. Hayani.

Megan with Nurse Laura and Nurse Kathy who are both Nurse Practitioners at the clinic. Kathy has become like Megan’s second mom at the clinic.

Megan with Nurse Jenny who is like a sister to Megan. She’s the best!!!

Beth is the social worker at the clinic, and she has helped Megan through some of her toughest times.

Of course no Christmas party is complete without a visit with Santa. Megan and her friend Olivia both shared their Christmas wishes with Santa. I have a feeling their wishes had nothing to do with presents.

On Monday morning, Megan meets with her radiologist to plan the next round of her battle.  Of course we wish Megan was rid of cancer for good, but after receiving all of her scan results, our perspective is that things could have been so much worse.  We can either sit back and feel sorry for ourselves this holiday season, or we can follow Megan’s lead and never give cancer the satisfaction of knowing it got the best of us.  Megan’s attitude continues to be one of never giving in and fighting with everything she’s got.  As Michael Douglas once said,

“Cancer didn’t bring me to my knees.  It brought me to my feet.”

Megan is still standing tall!!!  Until next week…