That Big Bad Roller Coaster

In previous posts, I have compared Megan’s Journey with cancer to riding the biggest, baddest roller coaster you have ever experienced.  Over the past nearly five years, there have definitely been times when we wondered not only how we would get through the day, but how we would even make it through the next hour.  Seeing your child suffer is the worst kind of pain for a parent, but I’m sure it pales in comparison to the actual physical and mental suffering Megan has experienced at the evil hands of childhood cancer.  On the flip side, Megan and our family have also encountered tremendous highs.  I can’t explain the feeling of euphoria that came over us in February, 2016 when we learned that Megan was officially in remission.  Throughout this journey, Megan and our family have experienced the very best that humanity has to offer.  The kindness, caring and generosity of everyone on Team Megan has been humbling to say the least.  Going through this battle with Megan has restored my faith in humanity and the inherent goodness that lies within people.  As you travel this arduous road, one of the lessons you learn is to not let yourself ever get to high or too low, because just like that big bad roller coaster, you just never know what is waiting over the next climb.  This week proved to be the perfect example of what I’m talking about.

This past week was a huge one for Megan as she had a CT scan on Monday and her MRI under anesthesia on Tuesday.  As usual, Megan handled her scans like a superstar.  She has been through this so many times that everyone at CDH seems to know her and they treat her so well.  She has an anesthesiologist that she really likes, and he always makes sure he is working when he sees Megan’s name on the schedule.  Although she got through the MRI with no problem, after the mental and physical stress of going through scans, Megan is always pretty exhausted on the ride home.

Megan always struggles to recover from week two of her three week chemotherapy cycles, and this one was no exception.  Although she started feeling a little better last Sunday, early in the week she was still having some stomach issues and feeling exhausted.  At her CT scan on Monday, her blood counts showed that her platelets were low, but her hemoglobin and white blood cell counts were hanging in there.  Her oncologists asked to see her Thursday when they would check her blood again and we would go over the scan results.  In the meantime, Megan continued to try and use her week off to physically recover and get ready for the first treatment of week three, which will take place this Tuesday.

Waiting for scan results is the absolute worst.  When we met with one of her oncologists on Thursday, he shared good news with us.  Megan’s tumors are responding to these experimental chemotherapy treatments as the CT showed that the tumors in her chest have shrunk considerably and the major tumor in her neck is also much smaller.  The only tumor not responding is the one at the base of her skull, so they are deciding whether or not to go after that one with a procedure called gamma knife radiation.  Obviously, we were very pleased to learn that the chemotherapy and proton radiation are working.  The plan is now for her to go through two more cycles (6 weeks) and then go through a full set of scans again, including a PET scan.  At that point, we will determine the next course of action.  Unlike her first two chemotherapy protocols, which were clinically proven and had a set length of treatment, this current experimental treatment really doesn’t have a defined end date, so her doctors will be using her scan results in combination with how Megan’s body is holding up to determine the length of treatment.  It’s a little unsettling to know there is no definite ending date for the chemotherapy, but to know that it is working was definitely a relief.  Of course, Megan never doubted that her body would respond, because she just never loses faith in herself.  Her mental strength is amazing.

Megan’s proton radiation treatments are starting to take a toll on her skin as she is becoming more and more uncomfortable with each treatment.  Luckily, this will be her final week of treatment and her skin can start to recover, but here is a picture of what her skin looks like to date as a result of the proton beam.

Also, because her platelet count was low, they had trouble with her port during the scans.  When they accessed and de-accessed her port, she was bleeding much more than normal, which caused the location of her port to become severely irritated.  When she went to the CDH clinic on Thursday, Nurse Jenny had to access her with an extra long needle, which Megan was not too happy about 🙂  Of course, Nurse Jenny pulled it off without a hitch.  She is the best!!!

Remember that big bad roller coaster I was telling you about?  After we got the good news from Megan’s oncologist on Thursday, I had to head back to Coal City for an appointment while Deb drove Megan to her proton radiation appointment.  For the past few days, Megan has really been having trouble with severe heartburn which tends to radiate throughout her chest and to her back.  Also, one of the side effects of chemotherapy is damage to the heart, so Megan has been seeing a cardiologist and is on medication for some weakening of her heart.  The cause of the heartburn is the proton radiation beam that is clipping her esophagus.  In order to get the entire tumor in her neck, there was no way for them to get to it without clipping a bit of her esophagus in the process.  The cumulative effect of all of the radiation treatments has caused some damage to the area, which is resulting in her heartburn problems.  Sometimes it gets to the point where she can’t even eat.  While she and Deb were meeting with the radiologist, Megan started getting pain her back and chest that got so severe that it had her in tears…and when she is in tears, you know she is hurting.  Over the past five years she has developed a pain tolerance that would put most adults to shame.  The radiologist said that although he believed it was all due to the heartburn issue, her symptoms of pain in her chest and back along with an elevated heart rate were all classic signs of a heart issue.  He recommended that if it got any worse, we would need to go to the emergency room.  After some consideration, Megan decided that just to be sure it would be best to get it checked out, so when I got home, I got a phone call from Deb that they were going to the emergency room.  Just like that big bad roller coaster, things quickly went from happiness to concern as I turned around and headed back to CDH.

While in the emergency room, Megan went through an EKG, heart x-ray and a CT scan.  After checking everything out, the doctors were convinced that her pain was caused by the proton radiation and it was just something she would have to deal with until her treatment was done.  Megan was extremely relieved to know that when she is getting that feeling, it is not a problem with her heart.  Although it was a very long day as we didn’t get home until about 11:00 p.m., I think it gave her some much needed piece of mind.  Here she is in the emergency room flashing that smile to let everyone know that she’s got this under control.

Kenzi was excited because Makenna Emerson was coming to spend the weekend with her.  Being three hours away while Megan is going through all of this isn’t easy on a sibling, so having Kenna there was a welcome respite for Kenzi.  While she was there, they did all the classic UW Madison things.  Here are a few pictures of their adventures.

On Monday, Megan heads back to proton radiation and on Tuesday, she starts Round 3 of her chemotherapy treatments.  Although the last six weeks haven’t been easy, somehow she always manages to get off that roller coaster with that infectious smile intact.  Her positive outlook on life in the face of such challenges is something we could all learn from.  Until next week as the battle continues…

“Everything Hurts So Bad”

The second week of Megan’s three week chemotherapy cycles continues to be a tough one for her.  We were hopeful that changing from Neulasta back to Neupogen would help her, but it seems that this just may be her normal reaction to the week two chemotherapy combination she receives.  On Tuesday, Megan went to the CDH clinic to receive her two chemo infusions and on Wednesday, she was actually doing pretty well, but the side effects hit her hard again starting Thursday afternoon and lasted through the evening on Saturday.  The nausea started early afternoon on Thursday and culminated with her throwing up on Saturday around noon.  On Friday, she really started experiencing some serious bone pain, which in her words feels like lightening is shooting through her legs and back.  It got to the point on Friday night that she had to resort to some medication to finally help her get to sleep.  Megan is on so much medication that she doesn’t like taking things unless she absolutely has to, but when she turned to me at about 11:00 p.m. and said,

“Dad…everything hurts so bad.”

I knew it was time for her to take some medication and get some much needed rest.  As a parent, I can’t explain how hard it is to see your child in so much pain and discomfort, but Deb and I do our best to follow Megan’s lead and stay strong.  The nausea combined with all of the bone pain would have caused me to tap out long ago, but giving up is just not in Megan’s vocabulary.  The tougher things get, it seems like the more mental and physical strength she finds.  It’s really quite remarkable to witness.

On Monday, Megan was excited because she was feeling good and Makenna Emerson planned on accompanying she and Deb to proton radiation.  They left a little early to stop and do some shopping where Megan and Kenna both bought Under Armour visors.  Megan always has a great time with Makenna as she helps take her mind off of things whenever they are together.  That night, they both took a swim and modeled their new visors 🙂

I’ve mentioned this before, but this is the best analogy I know of to explain what it must feel like to get a chemo treatment.  It would be like having a plate of food put in front of you that you know is going to give you food poisoning, but you don’t have any choice but to eat it.  Yet somehow, Megan still manages to show up at the CDH clinic every Tuesday with a smile on her face and the most positive attitude you could imagine.

She enjoys seeing all of the amazing medical professionals at the clinic, and she is constantly roaming from room to room to see if there are any other kids there that she could help.  By the time she makes all of her rounds and talks to virtually everyone there, the four hours really don’t seem all that long to her.  Immediately following her treatment, we headed to the proton radiation center, which is only about a 15 minute drive from CDH.  After her proton radiation treatment, we were finally free to head back home.

On Wednesday, Megan still felt pretty good, so that evening she invited her friend Jaime Frazier and her baby Fitz over to the house to swim.  Megan works with Jaime at the dance studio, and Megan adores both her and her baby boy.  Fitz had a great time swimming, and having them over was another much-needed distraction for Megan.

Thursday and Friday are when the effects of her chemotherapy treatments really started to take a toll.  Over the years, she has learned how to tolerate the constant nausea, but it was the bone pain that was really causing the majority of her discomfort.  It got to the point on Friday where she was trying to sleep as much as possible because that was her only source of relief.  On Saturday, the nausea got so severe that she threw up, but she really didn’t seem to mind that much because she was finally getting some relief from the bone pain.  When you have We also had the Cougills come over for supper on Saturday, and Megan was disappointed that she wasn’t feeling better for their visit, but we still had fun.  On Sunday morning, she finally woke up at 11:00 a.m. feeling much better, which we knew because she wanted to go out for breakfast.  Heading to the Whistle Stop was her first time out of the house in three days!  She also had been trying to plan an opportunity to hang out with her friend Caitlin, and after breakfast, she said she felt up to it.  Although she was still really tired, I think she just needed to feel like she was doing something social.

A couple weeks ago, an organization that supports childhood cancer patients reached out to Megan and wanted to buy her a gift.  Megan came up with the creative idea of a world map where she could place pins of the locations of her “Team Megan” supporters.  She thought that whenever she was feeling a little down, she could look at the map in her room as a reminder of all of the people who are supporting her.  She received her map and spent a couple days marking all of the spots where she knew her supporters were from.  As she started to place pins on all of the locations, it was amazing to see all of the support she has received from not only the United States, but from across the world!  It really seemed to lift her spirits to complete that map and get it hung in her room.  She hung it in a spot that she can see when she sleeps on her left side, but can also see in a mirror if she sleep on her right side.  We could never thank everyone enough for the love and support you have shown to Megan throughout her trying journey.  Believe me when I tell you that I know she feels your kind thoughts and prayers for her.

Earlier this spring, Megan was honored to receive the American Red Cross Hero award for her work in raising money and awareness for childhood cancer.  The people at the Red Cross in Chicago continue to be so kind and supportive of her as they recently sent her a care package with a gift card, but more importantly, she received a personal card from many of the people who work there.  She had so much fun opening the cards and reading each personal note of inspiration.  Thanks to everyone at the Chicagoland American Red Cross!!!

Although Kenzi is in Madison, WI for her summer school course and her two summer jobs within her speech pathology major, she and Megan still manage to talk via FaceTime everyday.  Whenever Megan is having an especially rough time, Kenzi is still her go to for support.  In three weeks, Kenzi is coming home for the weekend, and then she will be home for another couple weeks starting August 7, which I know Megan is excited about.  Megan’s battle has been tough on Kenzi, but we are so proud of how she continues to persevere and find success as she prepares to make a life for herself after college.  Although everyone would have understood, Kenzi has never used her sister’s illness as an excuse. Instead, I think the girls feed off of each other’s strength, which makes them both stronger and more determined than either would be alone.

This is a very big week for Megan as she has her first set of scans since she started this latest chemotherapy treatment.  Although the primary tumor in her neck is smaller, there is still the anxiety of the unknown that comes with every set of scans.  On Monday, she receives a CT scan at 8:20 a.m. and then has to hang out until her proton radiation treatment at 12:25 p.m.  On Tuesday, she has to report for an MRI under anesthesia in the morning (the exact time TBD on Monday) followed by proton radiation at 3:55 p.m.  We should receive the results of her scans on Wednesday, which will let us know if her current treatment plan will continue or need to be adjusted.  We are hopeful that her body once again responds to the chemotherapy and the tumors that showed up on her last set of scans are gone.  The busy schedule when she is already run down from chemotherapy along with the accompanying anxiety will make for a tough three days for Megan, but as always, she will find a way to power through it.

We hope everyone had a happy July 4th weekend, and as always, thank you for supporting Megan and our family.  We are thinking positive and planning to celebrate when Megan gets good scan results this week.  Until next week…

It’s Only Hair

Megan has nearly completed week four of her new chemotherapy protocol.  This current treatment schedule contains three different chemotherapy drugs within a three week cycle.  The first week, she receives two of the drugs, and then the next week she receives one repeat chemo and the third drug.  Week three she gets a break to allow her blood counts to recover enough to start the cycle all over again.  That’s the usual chemo process as the drugs do so much damage to the body that it needs time to recover so the drugs can tear you down once again.  As I’ve said so many times, the archaic treatments we use to treat pediatric cancer are really quite barbaric.  In fact, I can’t help but think that when Megan’s generation of cancer fighters finally makes a change happen, history will look back on how our country treated these kids with a mix of anger, disbelieve and regret.  However, until our country and the big pharmaceuticals decide that finding less toxic and more effective treatments for childhood cancer is a priority, this is the hand kids like Megan have been dealt.

On Tuesday, Megan had her first chemotherapy treatment of her second cycle, and to date, she has handled the treatment remarkably well. Although she has been tired and fights some mild nausea, she has still been able to function without too much impairment.  During her first cycle, it was week #2 that really got to her, but her doctors think it may have been the Neulasta that caused her so much discomfort.  During her previous two go-arounds with chemotherapy, Megan received a daily injection of Neupogen following her treatments, which is a drug to help boost her white blood cell counts.  This time, her doctors wanted her to try Neulasta, which serves the same purpose, but requires only a single injection.  Many of the severe side effects Megan experienced following her week #2 treatment were symptomatic of Neulasta, so this time her doctors put her back on Neupogen in hopes of mitigating the rough time she had a couple weeks ago.  Megan goes back to CDH on Tuesday for her second chemo treatment of this round, and then she starts the daily injections of Neupogen the day after, so we are hopeful that she has a little easier time, but only time will tell.  Luckily, we have Nurse Kortni next door to give Megan her daily shots!  I’m not sure Megan would really trust anyone else 🙂

One of the most visible side effects of chemotherapy treatments is the loss of hair.  Megan has already been through this twice, and just when her hair was really starting to grow out, the chemo struck again.  You would think that losing her hair yet again would be a traumatic experience for an 18 year old girl, but if it was, Megan hid it very well.  Her hair started falling out a little bit last weekend, and by Wednesday, she said it was driving her crazy.  Not only was she constantly pulling hair off of her clothes, but the worst part about it is that it actually hurts her scalp.  She says it feels like she has a pony tail in too tight and it is just constantly uncomfortable.  On Wednesday, she and Deb were getting ready to make the hour and a half drive to Warrenville for her daily 5:15 p.m. proton radiation appointment when she said she couldn’t take it anymore and wanted her head shaved.  In typical Megan fashion, she managed to find the humor in the situation.  She first asked me to make one cut down the middle of her head so she could see what she looked like with a reverse mohawk.  Then she wanted a mullet so she could look like Billy Ray Cyrus!!!  As usual, she managed to take a situation which could have been extremely emotional into one that made Deb and I laugh right along with her.  Once again, I often wonder who is really taking care of who in this relationship 🙂  Finally, we managed to finish the job and after taking a quick shower, she said she felt so much better.  And of course, she still looked as beautiful as ever.

On Friday, she complained once again that her hair was bothering her, so she asked us to finish the job and buzz it the rest of the way off.  Here she is in the waiting room at the Northwestern Proton Center sporting her newly shaved head.  Once again, that ever-present smile is still there.  She still refuses to ever let cancer gain the upper hand.  I thought this picture was especially telling because not only does it show her without hair, but it also shows the marks on both arms that have to stay there for five weeks to guide the placement of the proton radiation beam.  You can also see how her skin is starting to get red on the lower left side of her neck, which is where the latest largest tumor was that is getting treated by proton radiation.  By the end of her radiation treatment, that area will be severely peeling like a really bad sunburn.  It also shows the port placement in her upper right chest which she has had since December 30, 2014.  The port is used for all of her chemotherapy infusions, IV’s and blood work.  The girl has been through so much, but you would never know it if you talked to her.  She is still as positive and determined as ever to beat down this dreaded disease.  I really don’t know how she does it.

As I reported last week, Deb accompanied Kenzi back to Madison last week as she had to get back to start her two summer jobs.  By the way, Aunt Janet and Cousin Carly also went to help Kenzi move back in.  Here is a picture of Kenzi and Carly flashing the “W” at the base of Bascum Hill 🙂

Kenzi is working in one of her professors speech pathology labs and she also works as an aide for a private speech pathologist.  When she took the job with the private speech pathologists last December, one of the deals was that she had to work in the summer because the special needs kids she works with require stability.  Of course, Megan relapsed after Kenzi took the job, so although she had to go back, it was tough on her.  Luckily, through the magic of social media and Facetime, the girls still talk everyday.  Also, since Kenzi needed a couple of things, I took off after work one day to go meet her for a quick supper, which really made my day!  It’s always so good to see Kenzi and know that she is thriving at UW.  We could not be more proud of her!  Madison is really a beautiful place in the summer, so I know she is having a great time taking it all in.  Here is a picture of the two of us sitting at the Union terrace by the lake.

On Monday, Aunt Janet and Carly were still in town, so we took the opportunity to get together and celebrate Grandma Judy’s birthday at Maggiano’s in Naperville.  It was great to see Grandpa and Grandma Coope and to celebrate the birthday of such a special lady.

Last week, I posted some pictures from Megan’s graduation party.  Since that post, I have received a few more pictures from the event that I wanted to share.  We had such a great time celebrating not only Megan’s graduation from high school, but also all of the other incredible things she has done in her efforts to advocate for childhood cancer.  Our sincere thanks to everyone who took time out of their busy summer schedules to come and celebrate with us.

I didn’t have this picture of Grandpa and Grandma Coope when I posted last week.

Megan loved the taco bar!

Here is another special gift Megan received to celebrate her #morethan4 campaign in support of childhood cancer.

We are so relieved that Megan has been feeling okay this week, and we are very hopeful that it continues following her treatment coming up on Tuesday.  We also received word from her medical team that they have scheduled her next set of scans for July 8 and 9 to determine if this new chemo regiment is doing its job.  The tumor in her neck has definitely reduced significantly in size, so Megan is convinced that it is working.  If the power of positive attitude has any effect on her recovery, then cancer doesn’t stand a chance!  Although Megan has been doing great this week, there are still moments where her body needs a break, and when it does, her Boo Boo Kitty is right there by her side.  Until next week…

 

Achievements Worth Celebrating

This was week three of Megan’s latest chemotherapy protocol, which means her first cycle is now complete.  During her first week of treatment, she received two different chemotherapy infusions, and she actually handled them both fairly well.  However, the two additional treatments she received in week three really knocked her down.  Her reaction was sadly reminiscent of how she reacted to her very first 54 week treatment back in 2015.  It was getting to the point where we were starting to worry whether or not she would be able to participate in her graduation celebration that we had planned for Saturday, June 22.  We had scheduled her graduation party well before she was diagnosed with her latest relapse, so instead of canceling the event, we decided to roll the dice knowing that Megan usually finds a way to make sure cancer doesn’t win.  Thankfully, this particular chemotherapy schedule gives her a break from treatment in week three to give her body time to recover.  As usual, Megan’s determination started to shine through late in the week as she really turned the corner.  By Friday, we knew that she would be full go for her celebration.

The purpose of most high school graduation celebrations are pretty simple and to the point by taking time to look back on the accomplishments of 13 years of school which culminated in graduating from high school.  However, given Megan’s history, her celebration was a little different.  Starting with her original diagnosis of Stage 4 Alveolar Rhabdomyosarcoma on December 30, 2014, Megan never was able to attend a full year of high school.  The physical demands of her original 54 weeks of treatment, and then the subsequent chemotherapy and radiation treatments from her next three relapses, caused her to have a very nontraditional high school experience.  She was unable to participate in high school activities and unfortunately, she lost touch with many of her friends and missed most of the traditional rites of passage that come with being a high school student.  Although she had quite the atypical high school experience, she has been anything but dormant and inactive during her four and half year battle.  So instead of using her graduation party to solely recognize her high school achievements, we made it a point to use this opportunity to celebrate all of the other incredible things she has accomplished during her journey.

As followers of this blog know, Megan has overcome a physical and mental battle that would have long ago caused most adults to wave the white flag in surrender.  There have been so many times in the past, and quite recently, that I marvel at how she keeps fighting so hard against this dreaded beast.  Obviously, Megan has expended tremendous effort and it would be understandable if she had become a little self-centered as she was forced to focus so hard on her personal battle.  However, Megan has done exactly the opposite as she has become a passionate and powerful voice for all kids who are fighting childhood cancer.  Her life’s goal has become two-fold:  first, she is more determined than ever to win her own fight, but second, she is determined that no more kids have to go through what she has experienced.  She wants to put an end to childhood cancer, and I know she will never stop being a motivated advocate against the disease.  Over the past four years, Megan has raised well over $200,000 to support research efforts to fight childhood cancer.  She has worked with Ivory Ella to design a line of merchandise with the goal of raising money and awareness for childhood cancer.  She has been in front of the Illinois House of Representatives to help pass a House Resolution aimed at encouraging the Federal Government to increase their current paltry investment in childhood cancer research.  She has traveled to Washington, D.C. to participate in Curefest where she was a featured speaker in front of the Capital Building.  She has met personally with all of her local Federal and State legislators to advocate for more funding to support effective childhood cancer research.  She has been the keynote speaker for the Cal’s Angels annual fundraiser and been chosen as one of the Grundy County “Women of Distinction” for her advocacy efforts.  She has also connected with kids from all of the world who look to her for support and guidance as they fight their own battles with this awful disease.  These are just a few of the many accomplishments we tried to highlight and celebrate at Megan’s graduation party on Saturday.  As someone wrote on a card to her,

“Megan, you are an advocate for some, but an inspiration to many.”

We had the perfect day, and although I wasn’t able to capture everything, hopefully these few pictures will give you some idea of how special this day was to Megan and our family.

Kenzi was helping Megan with her hair prior to the start of the party. Chemotherapy is already starting to impact her, as she is starting to lose her hair. When I asked Megan about it, she said that at this point, she didn’t even care. I think she is ready to wear her bald head as a badge of courage. However, in the meantime, it was sweet to have her sister there to help her.

We got Megan’s cake at K&W Bakery in Coal City, and it was so good!!! Also, you can see just a few of the over 100 cupcakes that Aunt Tami generously made. Megan’s favorite was the almond flavor, but they were all awesome.

Megan with Kenzi and Makenna Emerson. As always, Makenna was so helpful getting ready for the party.

Megan with her middle school volleyball coach, Pam McMurtrey who has remained such a great supporter of Megan’s.

It was so nice of Jerry Cougill to travel all the way from Elkhart, Indiana to be at Megan’s party. His wife Kay was unable to come, but we know we will catch up with them at a later date. The girls love the Cougills and were so excited to see “Uncle” Jerry.

These are a few of Megan’s friends who stopped by to see her.  Megan was excited to see all of them.

Readers of this blog may remember little Ellie.  When Megan was receiving her treatments, Ellie was sadly diagnosed with ARMS a little after Megan’s initial diagnosis.  Since Ellie and Megan both received treatment at CDH, they connected early and have stayed in touch ever since.  During overnight stays at the hospital, Megan would go visit with Ellie and her mom Tara, and the girls just developed a special bond.  Megan was thrilled when Ellie and her family all made the trip down from Wheaton to come to her party.  We all love little Ellie and we are so happy that she is in remission!!!

While at CDH, Megan also connected with another teenage cancer fighter names Olivia. Megan was so touched when Olivia’s parents made the long trip down to see her. Her parents let Megan know that Olivia was on a vacation with a friend, but if she were home, she definitely would have attended. Once again, Olivia is another success story as she is in remission!!!

The girls loved it when Megan McIlvane stopped by with her new baby girls 🙂

It was so nice of Senator Rezin to stop by to congratulate Megan. Throughout Megan’s Journey, she has been a constant source of support not only to Megan, but to her cause of raising awareness for childhood cancer.

Megan was so happy that Aunt Janet and Cousin Carly traveled in from Connecticut for her party and to stay with us for a few days.

Cousin Sally provided all of the food as she is a professional caterer. Megan wanted a Mexican fiesta theme and Sally came through with an awesome spread.

The Bugg side of the family was well represented at the party, but I did miss getting a picture of Grandma Bugg, Uncle Matt and my niece Carsyn. We appreciated all of them coming. I also missed pictures of most of Deb’s side of the family who also came out to support Megan, but we so appreciated them being there.

Megan received so many thoughtful cards and gifts on Saturday, but this one was a little extra special for Megan. Kenzi sent Celeste Sheridan pictures of our pets, and Celeste used her incredible skills to hand paint this picture for Megan. When Megan opened it, she had tears of joy in her eyes. Thanks to Celeste for such an amazing and thoughtful gift.

We are so thankful to everyone who came over to support Megan’s accomplishments.  I wish I could have taken pictures and talked to everyone, but I know I missed some good friends and supporters.  Please know how grateful Megan and our family is for your constant love and support.  During the toughest of times, Team Megan has always come through as a source of inspiration for Megan, and we are forever in your debt.

Saturday was so much fun, but Sunday was a bit of a downer as Kenzi had to head back to Madison.  She works with a private speech pathologist, and one of the requirements for getting the job was that she would have to work over the summer.  Since the clinic opens back up on Monday, Kenzi had to go back today.  She is also working in the lab for one of her speech pathology professors, and that starts this coming week as well.  While working two jobs, she will also be taking a summer school course, but being busy is par for the course when it comes to Kenzi.  It was so good to have her home for a few weeks, but we also know that going back to Madison is what she has to do right now.  Throughout Megan’s Journey, Megan, Deb and I have been adamant that Kenzi continue living her life as much as possible.  When Megan relapsed, it was hard for Kenzi to leave, but through the magic of social media, Facetime and cell phones, the girls will stay closely connected until Kenzi comes back for a couple weeks in August.  Of course, I know we will all find time to get together more than once over the next six weeks.  We are so proud of Kenzi, and although we will miss her terribly, we are excited for her to continue on her own journey.  It was really nice that Deb, Aunt Janet and Cousin Carly headed back with her today to help her move in.  Kenzi was excited to show Janet and Carly the sites of the University of Wisconsin.  Here is a picture of the girls saying goodbye before Kenzi headed back to Madison.

Megan has spent today recovering from her busy Saturday and getting rested up for the continuation of daily proton radiation starting on Monday and her next chemotherapy treatment on Tuesday.  Let’s hope the side effects don’t cause her too much discomfort over the next two weeks.  It’s back to reality as the fight continues on Monday…

 

Does It Have To Be This Way?

Megan is in week two of her latest experimental chemotherapy treatment.  As if we really were in need of a reminder, this week served as a vivid one because it has been extremely rough on Megan.  In the first week of her treatment, she received two different chemotherapy infusions of Gemcitabine and Bevacizumab, and although it was a little tough on her, she actually responded pretty well.  This past Tuesday was the start of her second week of treatment, as she was scheduled to receive two more chemo infusions (Gemcitabine and Docetaxel), one of which was a new drug.  Here she is getting her second chemo infusion.

At this point, we don’t know if it’s the cumulative effect or simply that the Docetaxel is the culprit, but she has had a really rough week trying to recover.  She has been fighting nausea, stomach pain, bone pain, headaches, shortness of breath, bloody noses and a low grade fever.  It’s so hard to see her going through this yet again.  As usual, her pets are always by her side when she isn’t feeling well.

 

This past week served as yet another reminder of just how brutal and barbaric the treatments for childhood cancer are.  Due to a severe lack of interest from the large pharmaceutical companies coupled with a serious lack of funding from the Federal government, Megan’s treatments consist of virtually the same treatments I would have received had childhood cancer invaded me as a child…and I’m 52 years old!!!  Off the top of my head, I can’t think of another area of medicine that is lacking as far behind as childhood cancer…which makes absolutely no sense considering most everyone would agree that our children are this country’s most precious resource.  I just don’t get it…and I guarantee if you were in our house this week to witness Megan’s struggle, you would understand the fact that our country has to do better by these brave kids.  It’s just so frustrating, because it doesn’t have to be this way!!!

On Monday, Megan met with another radiologist to discuss another possible treatment for one of the tumors at the base of her skull.  It’s called gamma knife surgery, and is a radiation method that can treat a tumor with a single dose.  Although the smaller tumor in Megan’s neck is a candidate for the surgery, it would mean she would have to have a halo screwed into her head and bolted down for an hour long procedure.  Of course, given Megan’s rough history with brain MRIs and proton radiation on her head, her claustrophobia was a huge concern.  After talking to the doctor for over an hour and then that doctor consulting with her oncologists, they collectively decided to delay this procedure in hopes that the chemotherapy eliminates the tumor.  Although she may need to have this procedure done in the next few weeks, knowing that there is a chance she might not have to endure it was a welcome relief to her.

As I mentioned in a previous post, our family had planned an 8 day vacation where we were going to swing to the Rocky Mountains and see the Grand Canyon, Sedona, Hoover Dam, and some other sights.  The trip also included spending a day and half in the Denver area as Kenzi wanted to visit the University of Colorado as she is interested in possibly attending graduate school there in pursuit of her Masters degree in Speech and Language Pathology.  By chance, the Chicago Cubs also happened to be in town, so we had purchased tickets to see them play the Rockies, which we were all excited about.  Once Megan’s relapse and resulting treatment plan was official, obviously our vacation was cancelled. However, one of the important lessons we have learned throughout Megan’s battle is that you cannot let cancer stop you from living, because the minute you do, cancer has won.  No one realizes this more than Megan, which is why she was insistent that we still find a way for Kenzi to visit the University of Colorado.  After going back and forth on the issue and Deb working her usual magic with airfare, we decided to book flights for Kenzi and I to spend a day on a power visit to the area.

On Wednesday morning, Kenzi and I woke up at 2:30 a.m. to catch a 5:30 a.m. flight out of O’Hare.  We landed in Denver at about 7:30 a.m. Mountain Time and took an immediate Uber to Boulder to visit the University of Colorado.  Boulder is an absolutely beautiful city and the campus is incredible.  Here a few pictures of our visit.

 

After our three hour visit to the University, we caught another ride to downtown Denver and Coors Field to watch our Cubbies in action.  The weather was perfect and we saw an amazing 10-1 win by the Cubs.  After that, we stopped for supper and then caught a train back to the airport for our 9:00 p.m. flight back to Chicago.  We walked in the door of our house at 1:45 a.m.  So in the span of 23 hours, we made our official visit to Colorado…but we both paid for it the next day as we were pretty exhausted, but it was well worth it to get to spend some quality time with Kenzi.  Megan’s illness has been very tough on Kenzi as well, so getting her out and about for the day was just what she needed.

The other leg of our vacation that we still hoped to do was to all go to Vegas for the weekend where we had tickets to see Lady Gaga in concert as well as a Cirque de Soleil show.  Of everything we had planned for our vacation, Megan was most looking forward to the Lady Gaga concert, so she wanted to be well enough to go in the worst way.  We had spoken with her medical team about the trip and they said as long as she felt well enough and wore a protective mask on the plane that she could go.  Following Tuesday’s chemo treatments, Wednesday was actually not that bad for Megan, but unfortunately it hit her with full force on Thursday.  Although Thursday was extremely hard for Megan, she was still determined and hopeful to make the trip to Las Vegas, so she forced herself out of bed to get packed.  Unfortunately, as it has done so many times in the past, cancer had other ideas because on Friday morning, Megan woke up with a 99.9 fever.  Because chemotherapy compromises the immune system, Megan cannot risk an infection because her body is completely unable to fight it on its own.  When she is under chemotherapy treatment, if her fever gets to 100.5, that’s an immediate ticket to an in-patient hospital stay for intense antibiotics.  Megan sent a text to her nurse practitioner who said that with a fever, she should not get on a plane.  Although Megan and our family were disappointed and upset by the news, we all knew it was for the best.  In typical Megan fashion, she was insistent that Kenzi and Deb still make the trip, and of course, I agreed 100%.  Although cancer kept Megan down, you can never let cancer have a complete victory, so it was important to Megan and our family that Deb and Kenzi still make the trip.  It was hard for them to leave on Friday morning, but it was definitely what Megan wanted and the right thing to do.

I’m really happy that Deb and Kenzi got to spend some quality time together before Kenzi goes back to Madison, WI on Sunday, June 23.  Kenzi and Megan kept in constant contact throughout the weekend so she could keep Megan apprised of their adventures.  Also, since Megan was feeling so miserable with her fever and stomach pain, it did her good to FaceTime her sister because it kept her mind off of her discomfort.  Deb and Kenzi get back late tonight, so I’m sure I will get more pictures then, but in the meantime, here is a picture of Kenzi at a restaurant inside The Venetian, which is where they stayed.  Megan is a big fan of the Cake Boss, so she got a kick out of this picture.

Since Megan is experiencing a low grade fever and so much discomfort in her gastrointestinal system along with various other side effects, including what looks like the beginning of a nasty mouth sore, Nurse Kathy said to bring her in on Monday morning so the doctors could examine her.  Also, Megan starts her 5 weeks of proton radiation tomorrow with her first appointment at 8:45 p.m.  So that means two round trips up north tomorrow, which is four hours on the road, but such are the necessities when fighting childhood cancer.

Happy Fathers Day to all of the dads out there.  I hope you get the chance to spend some quality time with your kids and give them all an extra hug.  One thing I’ve learned during Megan’s Journey is to never take a single moment with your kids for granted, because you never know what tomorrow might bring.  Trust me…the day will come when you will be glad you took the time for that extra hug.

The fight continues tomorrow.  Let’s hope Megan starts to find some relief…

“Do You Believe In Me?”

“One of the hardest parts of life is deciding whether to walk away or try harder.”

Throughout Megan’s four and a half year battle with stage 4 Alveolar Rhabdomyosarcoma, she has displayed a determination, toughness and grace that far exceeds that of most adults…let alone a teenager.  Unless you have been through it yourself, there is no way to explain and do justice to the physical and mental battle that fighting childhood cancer poses.  As a reflect back on her battle, I remember the very first time she threw up from chemo, which became so routine that Megan would simply rinse out her mouth, wipe down her face and lay back down in an attempt to find some relief.  I remember when the chemo drug Vincristine caused her so much leg pain that I would have to carry her up the stairs just so she could make it to her bed.  I also remember the excruciating mouth sores when she grabbed my hand from her hospital bed, locked eyes with me and said, “Daddy…please make it go away.”  I also remember the seemingly constant mental battle of not only fighting back against this dreaded disease, but also the struggle of learning to deal with being a cancer survivor.  It was so hard to watch her check her body over and over for any abnormal bumps, or trying to transition back to school after being absent for over a year, or losing so many friends from a lack of contact.  When you have lived the totality of this battle and witnessed the devastation it causes, you can start to understand why some kids decide they have had enough.  Megan has had friends who have decided that they just can’t do it anymore and they understandably succumb to the vicious grip of childhood cancer.  Given all she has endured over the past few years, somehow Megan continues to find the inner strength and motivation to keep fighting back against this ridiculous disease with everything she’s got…even in the face of the devastating news she received this week.

About two weeks ago, Megan felt a spot on her neck that concerned her.  After meeting with her oncologist, he was also concerned and ordered an immediate CT scan of her neck.  Unfortunately, the scan showed two different spots in her neck which then necessitated a full battery of scans including a PET, chest CT, and an MRI of her neck and brain.  Megan had her PET and CT a week ago Friday and on Monday she had the MRI of her neck and brain.  Since Megan is extremely claustrophobic, she has to get her brain MRI under anesthesia.  On Monday morning, we left at 6:00 a.m. to get to her appointment at CDH.  At 7:30 a.m., they called her back and the anesthesiologist talked her through the procedure.  Here she is just before going under anesthesia and heading back for her two hour MRI.  That ever-present smile is still there, which I know is her way of letting all of us know she’s got everything under control.

Dr. Hayani called to give us the devastating news that Megan’s PET scan showed five different locations with cancerous activity.  She has the two spots we knew about in her neck, but she also had another spot in her chest, one in her abdomen area, and another in her lower back.  He also told us that he had discussed her case with Dr. Walterhouse at Luries, and they had decided to try a new chemo combination on her to see if it works.  They recommended she receive three new chemo drugs: Docetaxol, Bevacizumab, and Gemcitabine.  Although this chemo cocktail has not been clinically proven effective with multiple relapsed ARMS, they have found some success with some patients, so they believed it was worth a try.  The plan was to start her first chemotherapy infusion on Tuesday at the CDH clinic.

Although Monday was a tough day for Megan, that night we were scheduled to meet with Grandpa and Grandma Bugg as well as Uncle Todd and Gina in Bloomington to celebrate Megan’s graduation and Grandma’s 79th birthday.  Megan was determined that she was going, and she made it.  We had lots of fun!

We had an 8:30 a.m. appointment on Tuesday at the CDH clinic to meet with one of Megan’s oncologists, Dr. Kar.  Since Kenzi is home with us for a couple more weeks, she came to the appointment as well to support Megan.  After reviewing all of the scan results with us, he had a very tough and emotional conversation with Megan.  He told her that obviously her cancer had returned, and although they were recommending this new chemo protocol, he could not guarantee its success.  He said that there would be some very tough side effects, and if she didn’t want to go through it all over again, she didn’t have to.  He basically told her that she could give in to cancer and go enjoy the rest of life and see what happens.  Of course, Deb and I understood why he had to be honest with Megan, because she is now 18 years old and she deserves to know the full truth about her disease and the lack of available treatments.  However, for Megan, it was not at all the message she was wanting to hear.  She immediately fought back aggressively and passionately asked if they were giving up on her, because if they were, she was going somewhere else for treatment.  Her doctor immediately explained that by no means was he giving up on her, but he had to tell her the truth about her treatment and give her all of the available options, which included stopping treatment.  Megan emotionally explained that she was never ever going to quit and she wanted to start the chemo treatment immediately.  Dr. Kar suggested maybe waiting a week so our family could take a vacation we had planned, but Megan wouldn’t hear of it.  She said she was starting the treatment that day…end of discussion.  After Megan’s emotional plea to get things started, the wheels were in motion and it was “everybody in”.

Megan received infusions of Bevacizumab, and Gemcitabine on Tuesday morning.  Nurse Kathy also went through all of the potential side effects as well as the different medications Megan would have to start taking to mitigate those nasty side effects of the chemo drugs.  To pass the time, Kenzi, Deb and Megan played some Yahtzee, and we all did what we could to keep Megan’s mind off of the chemo.

 

We got out of there at about 2:00 p.m. and of course, Megan was absolutely exhausted from both the physical and mental strife of the day.  She was quickly sound asleep on the ride home.

There was no rest for Megan as on Wednesday morning, she was scheduled to meet with her radiologist in Warrenville to discuss her radiation options.  After a long discussion, it was decided that she would receive proton radiation on the largest tumor in her neck.  They would also be trying a different type of radiation on the other spot in her neck, which I will learn more about at her appointment on Monday afternoon.  However, Megan has been through the proton radiation regiment numerous times.  Her only concern was the thought that she would have to wear a full mask again, which for someone who is claustrophobic, is very tough.  On Friday, Megan had her next appointment at radiology where they conducted a CT test and determined how best to position her for the proton radiation.  This round of proton radiation will be daily for five weeks, which will put her at about 150 total radiation treatments during her lengthy battle.  After discussing with Megan and her doctor, they decided they could make it work without the full mask.  Although her body will be perfectly still, they will be able to do it with a mask that only comes up to her chin, which was a huge relief for Megan.  Here are some pictures of her fitting on Friday.

 

The side effects from Tuesday’s chemo treatment were bearable this week.  She had to take nausea medicine on Tuesday, Wednesday and Thursday, and Tuesday night she dealt with a severe migraine, but so far she is dealing with it.  This coming Tuesday, she receives the third chemo medication called Docetaxol which is supposed to be a tough one.  During this treatment protocol, she will receive a chemotherapy infusion every eight days, and following six weeks of treatment, they will conduct another full set of scans to determine if the treatment is working.  Until that time, we are hopeful that the cumulative effects of these new chemotherapy drugs are not too bad, but we know it will definitely be a significant physical and mental challenge for her.

When Megan met with her radiologist on Wednesday, we had a lengthy conversation about her tumors and all of her options.  At the conclusion of the conversation, Dr. Hartsell asked Megan if she had any questions.  Megan responded with one powerful question that I believe accurately summarizes her entire approach to fighting childhood cancer.  She said,

“Do you believe in me? Because I need you to believe in me.”

For the fourth time, Megan is now back in the ring getting ready to throw down with cancer.  What’s amazing is that instead of cancer wearing her down, she is just getting stronger.  Each time she relapses, I wonder if this is the time that she says she is tired and has had enough.  Instead, each relapse and each resulting battle only further strengthens her determination, passion and resolve to defeat cancer once and for all.

Megan…Do we believe in you? We would be foolish not to!!!

“I will win.  Not immediately.  But definitely.”

The battle continues this week…

Here We Go…Again…

As I reported in last week’s post, Megan was a little concerned because she had felt a bump on her neck.  After the past four and a half years of fighting Stage 4 Alveolar Rhabdomyosarcoma, Megan knows her body better than anyone, so if she was concerned, so were we.  We have learned to follow Megan’s lead, so we were all thinking positive in hopes that there was some other explanation other than a return of her cancer.  We met with Dr. Hayani on Tuesday and after a physical exam, he confirmed that Megan was correct that something abnormal was there.  He ordered an immediate CT scan, but Megan was still thinking positive.  She was showing no other signs of infection as her energy level was pretty good and she had no fever, but of course we were very worried.  Late Tuesday afternoon, Dr. Hayani called me with the news that there were actually two tumors in Megans neck.  The first was the one she felt, which is on the front left side of her neck and is about two inches in diameter.  The second was a complete surprise to us as it showed up in the back of her neck at the base of her skull and is about one inch in diameter.  I then had the job of informing Megan, Kenzi and Deb of the news, which is always so difficult.  I have said it before, but awaiting the phone call from the doctor after Megan’s scans is agonizing, and when I see the caller ID finally show up on my cell phone, I have to let it ring about three times before I get the courage to answer.  News like we received on Tuesday is the reason why it’s so hard, and I would never wish it on any parent…ever!

I called Deb to let her know and then we came home to talk with Megan and Kenzi.  When I told Megan the news, she took it in typical Megan fashion.  She got a surprised look on her face that quickly turned to determination.  She only had two questions:  “What are the options for treatment?”, and “When will treatment start?”  She didn’t cry; she didn’t get mad; she didn’t even change her expression.  I know that deep down she is scared and upset, but at that moment, I am once again convinced she was taking care of all of the rest of us.  I know she didn’t want to upset her sister or Deb and I, so she made sure and kept it together.  There have been so many times throughout her four and half year ordeal that I have wondered who is really taking care of who.  She is so strong!

All of the medical professionals at CDH are amazing people, and they worked so quickly to get Megan’s next set of scans scheduled as soon as possible.  Megan had scans two months ago, and they showed nothing in these two spots where the two new tumors showed up, so Dr. Hayani was concerned that these tumors were growing so rapidly.  As a result, they wanted to move very quickly to get a full set of scans completed and develop a treatment plan.  Thanks to Nurse Jenny at the CDH Clinic, we were able to get Megan scheduled for her full body PET scan and chest/neck CT on Friday.  Here is a picture of Megan getting ready for her PET scan at the Cancer Center in Warrenville.

On Monday morning, she will get a brain and neck MRI, which due to her claustrophobia issues means she will need to go under anesthesia for this hour long scan.  After that, we will know if her 4th relapse is isolated or more widespread.  Obviously, we have our fingers crossed that this relapse is once again isolated and treatable.

On Friday afternoon, Dr Hayani called me again with the results of her chest and neck CT, which were not the results we were hoping for.  He said the CT verified the two tumors in her neck, but it also showed two smaller suspicious masses in her back very near her spine.  He said they won’t know anything for certain until the PET scan comes back on Monday, but given her history, we have to assume that these two spots are also a recurrence of her cancer.  Given that she has multiple potentially cancerous tumors, treating them with just proton radiation is not a practical solution.  Instead, radiation will have to be combined with some other treatment.  Therein lies the problem.

Megan continues to advocate for a change because there are such limited treatment options for childhood cancer due to a lack of Federal and private funding.  The large pharmaceutical companies don’t see childhood cancer as a profitable venture, so they don’t invest money in researching treatments like they do for other types of adult cancers.  Also, the Federal government only allocates about 4% of their total cancer research budget on specific research geared towards pediatric cancers.  As a result, Megan exhausted her clinically proven treatment options after her first relapse. Luckily, her previous relapses have been isolated to a single spot that could be treated with proton radiation.  This time, given that there are multiple potential locations, she will need more than proton radiation.  Dr. Hayani discussed her case with Dr. Walterhouse at Luries, and they have decided to try another chemotherapy combination that although is not clinically proven successful with late term relapsed ARMS, has been successful with certain adolescent patients with the disease. The treatment is called TAG and consists of three different chemotherapy drugs:  Docetaxol, Bevacizumab, and Gemcitabine.  Of course, the decision to once again undergo chemotherapy was up to Megan.

When I told Megan the recommendation from her medical team was a combination of proton radiation and this new chemotherapy protocol, I wasn’t sure how she would respond.  Here’s the harsh truth…chemotherapy is torture.  Unless you have seen first hand the physical toll it takes on a child, you could never truly understand it.  As Megan likes to remind people, childhood cancer is definitely not the smiling bald kids you see on the television ads.  The truth is that it’s a brutal process, and there comes a point where some relapsed childhood cancer patients just decide that enough is enough and to go through treatment again is just not worth it.  How sad is it that in a country as wealthy as ours, that we are okay leaving our children to make such a tragic decision?  It’s completely unacceptable!!! However, when I told Megan the recommendation, she didn’t hesitate.  Her response was, “I have to do it, because there’s no other choice and I’m not quitting.”  Given her past history of fighting off this disease, I can’t say that I was at all surprised in her determined response.

On Tuesday morning, Megan will receive her first chemotherapy treatment.  We are hopeful that she can handle the treatment outpatient and not have to stay overnight in the hospital.  However, we will have to see how she reacts to this new set of chemotherapy drugs.  On Wednesday, we then meet with her radiologist to determine the course of action for her proton radiation.  It’s going to be a very busy Monday through Wednesday for Megan, but I know she will find a way to power through it.

It’s frustrating that cancer’s grasp on Megan just will not loosen.  The moment she thinks she might be breaking free, it reaches out and grabs a hold of her again.  In fact, when cancer grabs Megan, our entire family feels the strength of its grip.  It’s been said that when a member of the family has cancer, the entire family has cancer, and after living this nightmare for the past few years, I can firmly say that is especially true when cancer hits one of your children.  We have all felt the pain and anxiety of the past few days, but of course none of us have been hit as hard as Megan.  Somehow, she always manages to keep that smile on her face and that look of determination in her eye.  It’s completely unfair, but somehow she has to find the strength to step back into the ring with cancer once again.  I keep longing for the day when cancer will finally give in and leave not just Megan alone, but every single kid fighting this ridiculous and preventable disease.  We all have to wake up and realize that childhood cancer is not rare.  It is impacting kids and their families in devastating ways every single day, and it has to be stopped!!!

We could never thank everyone on “Team Megan” enough for all of your kind thoughts and prayers for her.  It means so much to Megan and our family.

On Tuesday, the battle begins yet again. Cancer is such a formidable foe, but don’t ever bet against Megan.  Here we go…again…