Playing a Poor Hand Well

On Tuesday, Megan received the first chemo dose of her third three week cycle. Overall, this was week 121 of chemo treatment for her, and during this time, we have learned more than enough about the nasty effects these archaic and toxic drugs have on the body. Whenever Megan starts a new chemo drug, there is always the hope that maybe this time won’t be as bad for her. Maybe she won’t actually lose her hair. Maybe she won’t be so tired that she can barely function. Maybe she won’t experience that awful nausea. Maybe she won’t have the bone pain and muscle aches. Maybe her digestive system won’t be completely messed up again. I could go on and on, but you get the idea. The side effects of chemo are just so awful, but I guess you have to expect it when the only clinically proven treatment option for these kids is to pump toxic chemicals developed 40 years ago into their bodies to kill the cancer cells…and Megan is to the point where her treatment options are not even clinically proven. As you travel this journey, sometimes you start to question if the treatments aren’t just as evil as the disease. I hold out hope that someday our country will actually prioritize the health of our kids, but until then, Megan and all of the other brave kids in her situation will have to keep finding a way to trudge through their chemotherapy treatments.

When Megan started her new experimental chemo drug, we spoke with her oncologist at length about what the side effects of this treatment might be. To make a long story short, the bottom line was that it wouldn’t be as bad as her first 54 week chemotherapy protocol, but there were still a number of side effects Megan might have to tolerate. In all of Megan’s chemo treatments, it seems like at the beginning of her protocol, we get lulled into a false sense of hope that maybe things won’t be too bad. During the first two three week cycles of her current treatment, we went through the same phase of unrealistic optimism. Megan seemed to be tolerating her new treatment very well, because other than a few digestive issues and some fatigue, she seemed to be doing okay. The issue is, there is a cumulative effect of chemotherapy that cannot be ignored or avoided. I’m afraid that Megan started to experience this as she started her third chemotherapy cycle.

On Tuesday, Megan had to be at Central DuPage Hospital at 7:40 a.m. because her oncologist wanted her to get an echocardiogram. One of the lesser known side effects of prolonged chemotherapy is the damage it can due to the functioning of the heart. During Megan’s first 54 week chemotherapy protocol, there was some significant damage done to her heart which caused her to be on medication for about two years. The heart damage seriously impacted her stamina and impacted her ability to complete basic everyday functions like climbing the stairs or taking her dog for a walk. Thankfully, over time, her heart has started to mend itself and she is no longer on the medication. However, now that she is starting chemotherapy again, her doctors wanted to get some baseline data to measure her current heart functioning. The results showed that there has already been a small amount of damage to her heart, but nothing like it was a few years ago. She has an appointment with her cardiologist on Tuesday to review her test results and see if any medication is necessary moving forward. I’m sure as Megan continues through her current chemotherapy treatment, her heart function will be closely monitored.

After her echocardiogram was completed, she then walked over to the CDH clinic to get her port accessed, get bloodwork taken, and then receive her chemotherapy treatment. Although her chemo push only takes a few minutes, we are always at the clinic for over two hours as Megan gets a full physical from her doctor and we wait for her lab results. Megan has traditionally been very lucky in the fact that her blood counts tend to recover fairly well from chemotherapy. In her 121 weeks of chemotherapy, I believe she has only had three blood transfusions and one platelet transfusion. Although her white counts drop quickly after chemo, so far they have always recovered in time for her to receive her next chemo treatment. Fortunately, this was again the case on Wednesday as Megan was cleared to receive her chemotherapy treatment as scheduled. After her treatment, she wanted something to eat and then settled in for her usual post-chemo nap at home with her Boo Boo Kitty.

For the first time during her new chemo protocol, the unavoidable cumulative effect of chemo started to hit Megan. On Wednesday, she had a lot of bone and muscle pain combined with a messed up digestive system. On Thursday, she felt stomach irritation and nausea for the first time. Although she never threw up, she just felt miserable and spent most of the day trying to sleep it off. Once again, whenever Megan needs some comforting, her kitty seems to always be there.

In addition to the nausea, fatigue and digestive issues, Megan is also experiencing muscle cramping and lots of general pain in her calves, neck and back. Fortunately, on Friday she started to recover, which was perfect timing because Kenzi decided to make another trip home this weekend just to spend more time with Megan before her classes start back up at the University of Wisconsin. Having her big sister home always seems to breath new life into Megan as they spend time watching their favorite shows, catching up on their TikTok videos, making coffee drinks or just hanging out.

Although Megan has reached her fundraising goal to fund an important and promising research project being conducted at the Children’s Cancer Therapy Development Institute, she is still actively working to raise even more funds. The more money she can raise, the more thorough the pre-clinical trial studies will be. These pre-clinical trial studies are vital to ultimately receiving funding for a full clinical trial on a drug that if finally approved, would be the FIRST EVER primary treatment drug approved for specifically for Megan’s type of childhood cancer. If you are interested in still donating to Megan’s cause, you can do so HERE. Megan would like to thank everyone for their generous support for this cause that could change the lives of so many brave children. If we all make it a priority, Megan is confident we can cure childhood cancer. I just have a feeling that if anyone can serve as the catalyst in making this dream a reality, it’s Megan.

On Tuesday, Megan heads back to CDH to meet with her cardiologist and then to receive her second chemotherapy treatment of Round #3. We are holding out hope that the cumulative effects of her treatments continue to be manageable. However, no matter what cancer and chemotherapy throw at Megan, she is still determined to overcome and finally defeat this beast once and for all. Optimism is a good thing, because without it the negativity always wins. We could all use a little of Megan’s optimism right now.

“Life is not always a matter of holding good cards, but sometimes, playing a poor hand well.”

Jack London

Until next week…

7…4…120…180

As we start 2021, we do so with Megan having cleared yet another milestone in her journey towards a full recover from Stage 4 Alveolar Rhabdomyosarcoma. Although I am convinced that 2021 will be filled with amazing achievements and joyous memories, with each new year I can’t help but reflect on everything Megan has been through since she started Megan’s Journey on Christmas day, 2014.

It has now been six full years since we first discovered the bump on Megan’s left forearm that Christmas morning. That concerning bump led us to Dr. Jercinovic’s office on December 26 which resulted in an immediate referral to Central DuPage Hospital, four days of tests, lots of tears and angst, and an ultimate diagnosis of Stage 4 Alveolar Rhabdomyosarcoma. What has followed has been a roller coaster ride unlike any other, filled with incredible highs and devastating lows. As I spent my usual New Year’s Eve in a quiet moment of reflection, I couldn’t help but think about the numbers 7…4…120…180.

Megan has officially started year #7 of her journey fighting this vicious disease. She was first diagnosed at the tender and vulnerable age of 13. It’s surreal to think about the fact that she has spent her entire teenage life engaged in this battle with cancer. She missed the second half of her 8th grade year and spent less than one full year as a full time high school student. Every time she would just start to get back into the routine of school and being a normal teenager, cancer would rear it’s ugly head and remind her that it wasn’t going away easily. Cancer’s grasp is so strong and completely breaking free is so difficult both mentally and physically. To put the length of her journey in perspective, Megan has spent one third of her life fighting with childhood cancer. The fact that she still does so with the same consistent levels of determination, passion and positive attitude is astounding to me. Cancer keeps trying to wear her down, but she will have none of it. Her will to win in year #7 is every bit as strong as it was in year #1.

Megan has now relapsed 4 times. Her first relapse came after being in remission for nearly a year as a tumor presented itself in her left breast. After surgery and more chemotherapy and radiation, Megan was only able to enjoy remission for a few months before another tumor showed up near her aorta. Because her clinically proven treatment options were exhausted, she underwent treatment with an experimental chemo cocktail and radiation that proved effective for her. After another few months in remission, a tumor showed up at the base of her skull in her clivus bone. She was initially treated with gamma knife radiation which her medical team thought was a success, only to realize that the tumor presented itself again in November, 2020. For this fourth relapse, Megan is now undergoing another experimental chemotherapy treatment as well as more proton radiation. Although each relapse has been difficult for her, the encouraging aspect of each of her tumors is that they have always presented in areas that could be treated with proton radiation. Also, she has never had a relapsed lesion show up in a major organ. When you are fighting this battle, you have to keep looking for the silver linings, because as Megan believes, if you stop thinking positive you have lost. Yes…Megan has been through four relapses, but in her eyes, it could be much worse. As I always say, life is all about perspective.

This coming Tuesday, Megan will begin the third three week cycle of her current experimental chemotherapy treatment. To date, she has handled this treatment pretty well as the only real side effects have been bone pain, digestive issues, and fatigue. Sometimes, the fatigue gets the best of her and she needs an afternoon nap. When that happens, there always seems to be a pet happy to keep her company.

Fortunately, that nasty nausea that so often accompanies chemotherapy has not made an appearance, and hopefully it doesn’t. Megan’s current treatment is part of a clinical trial taking place at Luries Children’s Hospital. At 19 years of age, Megan is too old to officially be a part of the trial, but she is being treated with the same protocols. To date, Megan has now endured 120 weeks of toxic chemotherapy. In other words, she has spent over two years of her young life enduring the short and long term side effects of these toxic treatments. There is not a day that goes by where she doesn’t have to deal in some way with the effects of all of this chemotherapy, but once again, she always manages to see the bright side. As she says, when her hair falls out and she starts experiencing side effects, she knows the chemotherapy is doing its job. Through Megan’s connections with other brave childhood cancer fighters from all over the country, she has seen some kids who understandably decide that they just cannot endure chemotherapy again. After watching Megan go through these treatments, I completely understand and respect such a decision because chemotherapy is nothing short of torture. We are so fortunate that Megan’s determination to win has always outweighed her trepidation about the treatments. To her, these treatments are just something she has to get through if she is going to fully recover. However, no matter how easy Megan makes it look, trust me when I tell you that 120 weeks is a long time to go through the physical and mental trauma caused by these toxic and archaic treatments. We have to start doing better for these kids!!!

On Wednesday, December 30, Megan finally completed her latest proton radiation protocol which called for 25 treatments to the tumor at the base of her skull. Once again, Megan had to endure that awful facemask that presses so tightly against her head as it is bolted down to the table to keep her motionless for the 20 minute treatment. For 25 weekdays in a row, Megan woke up at 5:30 a.m. to get on the road and to her treatment at 6:40 a.m. For her final treatment on Wednesday, our entire family woke up early to make the roadtrip to support and celebrate Megan’s accomplishment. Although I could not be more proud of her accomplishment, it was bittersweet to look around the exam room and realize that Megan was now putting her 6th handprint on the wall. Those 6 handprints account for 180 radiation treatments for Megan. Over the past six years, she has made 180 trips to the proton radiation center in Warrenville where she has been treated for her original diagnosis and her four subsequent relapses. As I look back on those 180 trips, I can never remember her complaining or feeling sorry for herself. Once again, I believe in her mind she saw each day of treatment as just another step forward in her journey towards recovery. Here are some pictures of us celebrating the end this round of treatment, which was her 180th.

Kenzi bought Megan a present for completing her radiation treatments, which Megan was really excited about.

It has been so much fun having Kenzi home for the past two weeks. She completed another successful semester at the University of Wisconsin-Madison and only has one more semester to complete her undergraduate degree in speech pathology. Over this winter break, she completed all of her graduate school applications and now awaits the process of seeing where she gets accepted and where she chooses to complete her masters degree. She has positioned herself so well both academically and via her other experiences, so I think she will have some difficult decisions to make as she determines where to continue her education. In the meantime, she and Megan have continued to enjoy catching up with each other whether that be heading to Starbucks, cooking together, cuddling the pets, or just hanging out watching some Netflix shows. There is nothing more fulfilling than having our family together.

Winter break is almost over as Kenzi travels back to Madison in a few days and Deb goes back to work on Monday. On Tuesday, Megan heads back to CDH for an echocardiogram to make sure the chemotherapy is not doing too much damage to her heart. Right after that, she will walk over to the clinic to start her third three week cycle of chemotherapy. It’s time to start week 121 of chemotherapy. Year #7…Here we go. Until next week…

Keeping Christmas Traditions

Christmas is our family’s favorite holiday as it is always filled with family, friends and joyous traditions. When I was growing up, my parents always took an annual picture of my three siblings and me at the top of the stairs, which is a tradition I have carried on in our home every year since Kenzi was born in 1999. Here is this year’s edition.

My mom always made a homemade cinnamon roll tea ring for Christmas morning, which I have carried on the form of homemade cinnamon rolls. I have also added an egg casserole to our traditional Christmas morning breakfast. The entire meal has become the stuff of legends in our family πŸ™‚

Normally, Christmas Eve is spent with Grandpa and Grandma Coope and Aunt Janet’s family, but COVID put a damper this year’s plans. To compensate, we held a Christmas Eve Zoom meeting with Aunt Janet, Uncle Mark and Cousin Carly. Although we couldn’t be together in person, we still had fun catching up and opening our presents virtually.

On Christmas night, we have always had Deb’s cousins over for chili and appetizers, but once again, the pandemic put a hold on this tradition. I still made the pot of chili and the girls put together a yummy charcuterie board.

Our family has also always enjoyed making all sorts of Christmas cookies and candies, but this year Deb and I decided since it would just be the four of us, we should probably hold off on having that many sweets in the house. However, on December 23, the girls decided that not having our traditional Christmas treats was unacceptable, so starting at about 7:00 p.m. they set off making Kenzi’s famous snickerdoodles, Megan’s yummy gingerbread cookies, and all sorts of other goodies including homemade carmels, fudge, peanut butter cookies, scotcharoos, mini cheesecakes, pumpkin pie, and a few other items. Needless to say, we have been trying to give things away to friends and family so we don’t eat it all. We even sent an overnight tin of Christmas treats to Grandpa and Grandma Bugg who we really missed seeing this Christmas.

Although we missed seeing our family and friends over the Christmas holiday, I have to admit that there was something relaxing and comforting about having our immediate family together the entire Christmas day. Here are a few pictures from our fun family Christmas. I’ll start with my favorite picture of the day πŸ™‚

And my second favorite picture…

Megan thought her Boo Boo Kitty needed to spend some time in her Christmas sweater πŸ™‚
Kenzi’s boyfriend Nick stopped by for a Christmas day visit…but it might have been just to get a cinnamon roll πŸ˜‰
It was so good to see our awesome neighbors, Makenna and Madison, for our traditional Christmas visit.

Megan has been so excited to have Kenzi home for an extended two week visit. Besides cooking together, they have been spending most everyday catching up with each other. They have had long talks in their bedrooms, watched TV shows together, caught up on their favorite Tik Tok videos, worked out together in the basement, and gone on their usual coffee runs to Starbucks and Dunkin. One of the side effect of chemotherapy is the damage it does to Megan’s fingernails, so Kenzi decided that she needed a manicure.

The girls even let Deb, Sparky and I accompany them on one of their Starbucks run.

Other than our Christmas celebrations, the girls have just spent a lot of time relaxing around the house.

This coming week for Megan is a big one as she has her final three proton radiation treatments. On Wednesday, she will celebrate treatment #25, which means the radiation protocol to treat the tumor at the base of her skull will be complete. Fortunately, she has tolerated this round of proton radiation very well. She has no skin irritation, and other than a little fatigue, she has experienced none of the side effects that her radiologist warned her could occur. Although Megan’s medical team is the best, I still believe that much of her success is due to mind over matter. Megan has gone into her fourth relapse with her usual determination, positive attitude, and grace. Somehow, through all she has been through, her mind never waivers from her belief that someday she will defeat this beast once and for all. On Wednesday, our entire family plans to take the 5:30 a.m. trip to Warrenville to help Megan celebrate the end of our 6th bout with proton radiation. We could not be more proud of everything she has overcome.

Although this holiday is still so very joyous in our family, I can’t help but become a bit reflective each year. Every Christmas morning there is that nagging thought in my mind that takes me back to six years ago when we first discovered the unexplained bump on Megan’s left forearm. She was just 13 years old at the time and in a matter of 24 hours, her life was turned upside down. At that time, we had no idea what the future would hold for Megan and our family. In retrospect, although we were obviously very scared, we really had no idea as to the depth of the physical and mental battle Megan would experience. We also had no idea how her cancer would actually affect our entire family. Six years later after four relapses, 120 weeks of chemotherapy, over 130 chemotherapy treatments, three surgeries, and side effects too numerous to mention, Megan and our family have come out of this ordeal stronger than ever. Fortunately, we have all fed off Megan’s incredibly positive attitude; her enthusiasm for life; her unique ability to win each day as it comes; her compassion for everyone around her; and her commitment to a cause bigger than herself. Although I always spend a few minutes early each Christmas morning reflecting on this difficult six year journey, when I see our two beautiful girls at the top of the stairs, I snap back to the moment and realize how very fortunate we are. As Megan always says,

Someone always has it worse than me. There is always something to be thankful for.

We hope you and your family have a very happy holiday season and we wish you the very best in 2021.

It’s About Your State of Mind

As we near the Christmas holiday, Megan is continuing with the current treatment protocol to treat the cancerous tumor that is located at the base of her skull. Throughout Megan’s four relapses, we have been so fortunate that none of her tumors have reached any vital organs or returned to her bone marrow. Every relapse has been in a spot that could be effectively reached with proton radiation. Also, her tumors have continually responded to whatever the chemotherapy treatment her doctors decide to prescribe. Following her first relapse, Megan had gone through all of the research-based chemotherapy options available to treat Alveolar Rhabdomyosarcoma. For her third relapse, she used an experimental combination that proved successful in treating her tumors, but she was unable to complete the entire protocol because the drugs were causing dangerous damage to her lungs. This time, she is using a drug that is in clinical trial for kids 18 and under, but since Megan is 19 years old, she is unable to officially participate in the trial. However, her doctors are treating her the same as if she were an actual participant. This past week, Megan finished week two of her second three week chemotherapy cycle, and today she completed her 19th of 25 proton radiation treatments. So far, she is handling both incredibly well, and I firmly believe that her positive response is in direct correlation to her incredibly positive mindset. As I’ve said many times before, in this battle, you are only as successful as your mind allows you to be. Attitude is everything.

Over the past four weeks, Megan and I have had multiple opportunities for long talks as we make the hour drive each morning at 5:30 a.m. to get to the proton radiation center in Warrenville for her 6:40 a.m. treatment. She is usually finished with her treatment by 7:00 a.m. and after a quick stop at Starbucks we usually make it back home by 8:00 a.m. By the end of the week, Megan is starting to get a little worn out so she might sleep on the way to her treatment, but oftentimes she is wide awake for both the trip there and home. During these morning commutes, I have gained even more insight into her thought process and how she views her personal battle and her life. Each day I come away more humbled at her maturity, dignity, grace and perspective. In a way, these early morning conversations with Megan have become somewhat therapeutic as she always assists me in getting my life back in perspective.

Megan talks often about the hand she has been dealt and how she views it. As she has said many times, having cancer is terrible and the disease has caused her so much physical and mental pain. However, as she keeps telling me, she could either sit on the couch each day and feel sorry for herself, or she can continue living each day to the fullest trying to make a positive difference. She talks often about the power of the mind and how important it is to stay positive. She often talks to fellow childhood cancer survivors and the first advice she shares with them is how important it is that they believe they will win. She also advises them to find something positive in each day and focus on what they have to be thankful for. The trick is not to dwell on the negative and fall into that trap of self-pity, because once you allow that to happen, cancer has won. I have always been a very logical thinker who only believes in things I can prove, but Megan has convinced me that the power of the mind to heal is so very real. Megan gets so irritated when doctors start talking about the sobering statistics that accompany childhood cancer, because to her, those statistics don’t take into account the individuality of each person. To her, statistics are just numbers to be ignored, because there is no way those statistics can account for her mind, her heart and her soul. Beating childhood cancer starts with the belief that you are going to win, and even given everything Megan has been through over the past six years, she has never ever wavered from her belief in herself. Given what society is going through right now as we fight through the difficult impacts of the pandemic, there is a wisdom in adopting Megan’s attitude towards life. No matter what challenges we face, our mind controls how we react. We can either let what happens to us control us, or we can control how we react to what happens to us. Choosing the latter can be difficult to master, but it will result in a healthier and more fulfilling life. I figure if Megan can approach life in this manner, there is absolutely no excuse for me not to follow her lead. She is wise beyond her years.

Megan has had proton radiation each morning this week. She was commenting just yesterday about how happy she was that she is tolerating the tight facemask so much better this time around. For her radiation treatments, she was fitted with a mesh facemask that adapts to the mold of her face and then hardens into the facemask that she uses for each treatment. When she goes in for treatment, she lays down and they place the facemask over her head and then bolt it to the table. I’m more than a little claustrophobic myself, so I really don’t know how she tolerates it, but this time around she is doing really well. During her previous proton radiation protocols when she had to wear a mask, she needed a dose of Ativan to help her relax enough to get through the process. This time around, she used Ativan for her first two treatments and then decided she didn’t need it anymore. Once again…the power of the mind.

On Thursday, Megan had her second chemotherapy treatment of Round #2. With this chemotherapy drug, she receives one infusion each week for the first two weeks and then her body gets a week off for her blood counts to recover. In conversations with her oncologist on Thursday, he stated that he wants her to get through 12 three week rounds of treatment and then assess where to go from there. He also stated that she would be scheduled for a full set of scans in February to determine the effectiveness of her completed proton radiation and chemotherapy to date. Following the completion of proton radiation, she needs to wait about two months for scans to allow time for any residual swelling from the radiation to resolve itself. Fortunately, Megan has been handling this chemotherapy well. We know there is a cumulative effect from chemotherapy, so some of her side effects may exacerbate themselves in a few weeks, but right now the extent of her side effects are headaches, digestive issues, muscle cramps, and some neuropathy in her calves and feet. Although that sounds like a long list of side effects, compared to what she has been through in the past, this list is tolerable. Thankfully, due to the holidays, Megan doesn’t have to go back for her next chemo treatment until January 5. We are so hopeful that she continues to feel good so she can enjoy the Christmas holiday.

We were so excited that Kenzi finished the first semester of her senior year at the University of Wisconsin-Madison and was able to come home Saturday evening. It always truly feels like the holidays when our entire family is back together. Kenzi had another very successful semester as she continues to thrive as a Badger. She is still pursuing a career path of becoming a Speech Language Pathologist with a focus on working in a hospital setting. This is an especially busy time for her as she is applying to eight different graduate schools in preparation for seeking her Masters degree to become a practicing SLP. All of the academic and practical experiences she as received at UW-Madison coupled with the personal experiences she had working for a private SLP, has positioned her well for acceptance into graduate school. We could not be more proud of everything she has accomplished. It is so good to have her home for two weeks.

Although Megan’s compromised eyesight has made driving impossible for her, she is finding other ways to keep her mind occupied. Her favorite pasttime continues to be baking cupcakes as she fulfills multiple orders each week. This past week she fulfilled her first really big order as she made 300 cupcakes for a corporate Christmas party. I was a little worried because she had a chemo treatment on Thursday and the cupcakes were scheduled to be picked up on Thursday night, but somehow she got it all done. Here she is decorating and posing with her biggest cupcake order to date. As always, if you want Megan to do any baking for you, you can reach her on her Facebook page or via email at megbugg@gmail.com

Somehow, after all she has been through for the past six years, Megan’s mind is still in the right place. She remains thankful for each day and continues to attack her personal battle with a zest for life and an attitude that remains as positive as ever. She continues to teach me that life is all about your state of mind.

Bald is Beautiful

The childhood cancer journey is a trip I would never wish on anyone. Watching your child go through the physical and mental strife that accompanies this experience is so difficult. As a parent, you never want to see your child suffer, but there are so many times that the childhood cancer experience makes you feel completely powerless. You are at the mercy of the disease and the toxic treatments, and there is nothing you can do to make the impact of the side effects any less. The physical chemotherapy side effects of nausea, painful neuropathy, digestive issues, bone pain, mouth sores, fatigue and so many others are just the reality that these brave kids face on a daily basis. What so many don’t see is the overwhelming mental battle that these kids have to muddle through during every step of their battle, and although it is tough on any kid, it seems to be especially tough on a teenage girl…for many reasons.

When teenage girls go through the childhood cancer journey, they are already at such a vulnerable time in their emotional development. As an educator for 32 years, which included a multi-year stint as a middle school principal, I have seen firsthand how difficult these years are for a normal teenage girl who is not going through childhood cancer. When you add the issues around childhood cancer to the mix, the emotional toll is so hard. Not only does childhood cancer severely impact the all-important social experience of teenage girls, but the chemotherapy and radiation treatments wreak havoc on their already changing bodies. Their hormone levels are altered, long-term fertility concerns become a reality, neuropathy and muscle damage impacts how they walk, visible radiation burns on their bodies, and although in the grand scheme of things it may seem minor, losing their hair is so traumatic for so many of them. We have been so fortunate with Megan because when she first lost her hair from chemotherapy in early 2015, she seemed to quickly come to grips with it as she refused to wear a wig from the first day she had her head shaved. For some reason, she seemed to handle the trauma over losing her hair well, and in fact, over time I believe she actually wore her bald head as a badge of courage. However, for many of Megan’s fellow teenage female cancer fighting warriors, the loss of hair seems to make the entire cancer battle so real. Getting their heads shaved is so difficult, and then going out in public as a teenage girl with a bald head can be a daunting emotional experience. It’s just one of the variables that makes childhood cancer so emotionally challenging for teenage girls.

According to Megan, you know your hair is about to start falling out when your scalp actually starts to hurt. Prior to her current chemotherapy treatment protocol, Megan has been down this road three times previously. With each experience, the entire process seems to get a little easier for her. It always starts with her frequently starting to play with her hair, and you can see her begin to pull strands of hair out one by one. Then it gets to the point where her hair starts to fall out on her clothes and onto her pillow. It’s at that point that she tells me that it’s time to shave her head because it is driving her crazy. This past Monday, Megan hit that point and when I stopped home for lunch, she said “Dad, you have to shave my head right now.” Although Megan was emotionally ready for it again, I have to admit that the process always hits me pretty hard. It seems like shaving her head is the realization that this battle with childhood cancer is actually starting for the fourth time. Although she was absolutely ready for it, to see her remaining hair fall to the floor for the fourth time was difficult…but as usual, Megan kept things light by asking me to give her a reverse mohawk before shaving all of her hair off πŸ™‚ She also kept her smile going and even posed for a picture with me when the process was finished. As has been the case throughout the past six years, Megan took better care of me than I did of her.

Every morning this past week, Megan left the house at 5:35 a.m. to get to her daily 6:40 a.m. proton radiation treatment. Thankfully, she is handling the treatments very well up to this point. So far, she has not had any skin irritation and she is tolerating the facemask well. She is scheduled for 25 total treatments, and this past Friday marked treatment #13, so she is past the halfway point. After Thursday’s radiation treatment, she had to be at the CDH clinic to start the second three week cycle of the current experimental chemotherapy treatment she is on. Referring back to the previous information on her hair loss, Megan said she is actually encouraged when she starts to lose her hair because she believes it is a sign that the chemotherapy is actually doing it’s job. Talk about making sure the cup is half full πŸ˜‰

To date, Megan is tolerating her chemotherapy treatments pretty well. Other than the hair loss, she is still experiencing some uncomfortable digestive issues, bone pain in her back and neck, and some fatigue, but other than that she is doing well. So far, nausea has not been an issue, which is a good sign. She is still experiencing serious vision and some headache issues, but that is related to the location of the tumor and not the chemotherapy. At this point, Megan’s doctors are unsure how long they will keep her on these three week chemotherapy cycles. A lot of their decision will be based on how well her body tolerates it and what future scans show in terms of the effectiveness of the drug in treating the current tumor at the base of her skull. However, we know that proton radiation and chemotherapy have always worked for Megan, and we have no reason to think otherwise this time around. Of course, after a long morning of radiation and chemotherapy, Megan is usually ready for a nap.

As I stated last week, Megan was so excited to recently reach her fundraising goal with CC-TDI. Megan also learned from Dr. Keller that CC-TDI plans to make her their very first “Citizen Scientist in Residence” which will allow her to participate in the organizations planning meetings…especially those meetings revolving around the pre-clinical trial she is funding. Throughout her fundraising efforts, Megan has received such incredible support from so many generous individuals and organizations. When you add her current fundraising for CC-TDI to her previous childhood cancer fundraising efforts through Luries Children’s Hospital, Megan has now raised over $400,000 for childhood cancer research!!! During her entire fundraising experience, one of her most ardent supporters has been Braceville Elementary School, which is located only a few miles from us. Braceville Elementary recently made a very generous donation to Megan’s fundraising efforts, and in response, Dr. Keller from CC-TDI offered to give their students a virtual tour of their research lab. On Friday, Megan and I joined their teachers and students for Dr. Keller’s virtual tour which was really fascinating. It is so exciting to have an innovator like Dr. Keller and his team completely focused on developing less toxic treatments for childhood cancer. Also, thank you to everyone from Braceville Elementary for continuing to support not only Megan, but all kids fighting this terrible disease.

Due to Megan’s vision issues, she is essentially homebound unless Deb or I take her somewhere. As a result, she really been enjoying making her cupcakes for anyone who wants them. She has an order most everyday, and like she says, the best thing about it is it helps give each day a purpose. She also still likes to pass the time by working on puzzles, word searches, or just relaxing with her Boo Boo Kitty. Somehow, through all of her trials and tribulations, she continues to attack each day with a positivity and thankfulness that I find truly remarkable. Let’s hope for another week of tolerable treatments as Megan continues on her journey to defeat childhood cancer once and for all. Until next week…

#wintheday

Megan is getting ready to start her second three week cycle of the new experimental chemotherapy treatment she is receiving. She is also eight treatments into her proton radiation protocol, and all of this is in an attempt to treat the relapsed tumor that is at the base of her skull. So far, her side effects from treatment have not been too bad. To date, she is experiencing some uncomfortable digestive issues along with some discomfort in her back. The chemotherapy is also already starting to make her hair fall out, which can be a traumatic event for a teenage girl, but when you have been through it three times previous, it is not that big of a deal for Megan. As she says, her hair is a small price to pay if it means beating down this beast once and for all. She also continues to struggle with the impact the tumor is having on her eyesight as the mass is pushing on the nerves that control the lateral movement of her right eye. As a result, she has severe double vision which means she really cannot see anything from a distance unless she closes one eye. Up close, her vision is still okay, but not being able to see anything far away means she cannot drive, which has really disappointed her. Her eye doctor has fixed her up with removable lenses for her glasses which only allows her to see out of one eye at a time. This has helped her discomfort because before this she would walk around with one eye closed so she could see. We are hopeful that as her proton radiation treatments and chemotherapy attack the tumor that the pressure is relieved and her eyesight returns to normal. However, if for some reason it does not come back to 100%, there are surgical options available for her. Of course it is a lot for Megan to deal with right now, but she is somehow remaining positive and as determined as ever to beat back her cancer for a fourth time. Given all that she has been through over the past six years, her positive outlook on life is really extraordinary. Her ability to stay in the moment and win each day as it comes is uncanny. Whenever I feel like complaining, thinking of her quickly snaps me back to the realization that life is good.

Megan was so excited when she reached her fundraising goal for childhood cancer research. She was working to raise $180,000 to fund some very promising research coming out of the Children’s Cancer Therapy Development Institute (CC-TDI). CC-TDI is studying the impact that a particular drug, when used in combination with other chemotherapies, can have on treating RMS cancers. In choosing to fund for this research, Megan talked do research doctors from all over the country, including UCLA, Duke and Luries Children’s Hospital just to name a few. She chose to work with Dr. Keller at CC-TDI because his research seemed to be the most promising as well as the most likely to get through the clinical trial process in the least amount of time. To give a drug a better chance of receiving the roughly $10 million necessary for a full clinical trial, there are pre-clinical trial mouse modeling that needs to be done. This modeling is what Megan has been raising money to fund. Thanks to the generosity of so many amazing people and organizations, Megan has reached her fundraising goal!!! After talking with Dr. Keller, Megan has decided to keep her fundraising page open and accepting donations, because the $180,000 was the minimum amount needed to run the preclinical trial studies. The more money she raises, the more complete the preclinical studies will be, thus increasing the chances to ascertain funding for a full clinical trial. If Megan and CC-TDI are successful in getting this drug through a successful full clinical trial, it would be the FIRST EVER primary drug approval to treat Megan’s type of cancer. You can still donate to her fundraising page HERE.

Speaking of Megan’s childhood cancer advocacy work, she was recently contacted by a television station from Decatur, IL regarding her efforts. WAND-TV wanted to interview Megan on her story and her fundraising cause. Megan is always excited for any opportunity to raise awareness for childhood cancer, so she eagerly accepted their offer. This particular opportunity hit close to home for me as I grew up only about 25 minutes south of Decatur, and grew up watching WAND-TV as one of the four TV stations we got in the pre-cable and pre-satellite dish years. As always, Megan did a great job in her interview, and we were also very appreciative that Dr. Keller from CC-TDI took time out of his busy schedule to talk with them as well. Here is her full interview.

Although Megan has been able to remain incredibly positive throughout the first three weeks of this treatment, cancer has once again profoundly impacted her life. As I mentioned earlier, her eyesight has essentially grounded her to home. Couple that with the impact of the COVID-19 pandemic, which severely limits her ability to go anywhere with friends, and it’s easy to see why there are times she gets pretty bored at home. She has to count on Deb and I to take her anywhere she wants to go, and she also is unable to work at the dance studio or the bakery due her eyesight and COVID concerns. Her outlets are the magic of Facetime and social media which allow her to talk to her sister daily and most of her friends. She has also enjoyed working puzzles with her mom in the evenings. However, her favorite outlet is still baking cupcakes, which seems to give her a daily purpose. If you are interested in placing an order with Megan, you can contact her directly on her personal Facebook page or via email at megbugg@gmail.com Her flavors include chocolate, vanilla, confetti, strawberry, Oreo, pumpkin, carrot cake, red velvet and pistachio. She also makes killer homemade frostings including chocolate, vanilla buttercream, whipped cream, and cream cheese (which is incredible on the carrot cake cupcakes!!!). Of course, when she can’t find anything else to keep her mind occupied, her pets always faithfully come to the rescue.

There are so many times I find it hard to believe that Megan and our family are in the childhood cancer treatment cycle yet again. Over the past six years, Megan has now been through 117 weeks of chemotherapy and over 125 radiation treatments. During Megan’s Journey, it seems like the times when Megan is in remission go by in the blink of an eye, and conversely, when she is in treatment the days seem like weeks and the weeks seem like months. However, through it all, Megan’s demeanor and outlook on life never seem to change. Megan is 19 years old and has relapsed from Stage 4 Alveolar Rhabdomyosarcoma 4 times. She is now in treatment again that includes experimental chemotherapy and at least 5 weeks of proton radiation. She is essentially stranded at home; can’t see well enough to function much on her own; is rapidly losing her hair for the fourth time…and is currently sitting at a table in the kitchen doing a puzzle flashing that infectious smile to once again let me know that she’s got this under control. Sooner or later cancer has to realize that it cannot break her. #wintheday

Until next week…

Another Holiday in Treatment

Our family has always loved the holiday season as there is nothing more fulfilling than celebrating having our family together. Kenzi came home from the University of Wisconsin-Madison on Sunday night and was able to stay with us until late Friday afternoon. Together, we cooked way too much food; did a jigsaw puzzle per day; watched the Badgers start their basketball season; and just generally enjoyed being together. Granted, this holiday was different for most everyone as the pandemic caused this year’s Thanksgiving to just be with our immediate family, but instead of focusing on the negative, we relished the chance for our family to be together without interruption. I wouldn’t want it to be this way every year, because we definitely missed our extended family, but it was really enjoyable to spend so much quality time as a family on this unique Thanksgiving. Although we had an amazing holiday, I couldn’t help but spend a little time reflecting on the fact that Megan was forced to spend yet another holiday being treated for childhood cancer.

As a reminder, Megan first went to the doctor about a suspicious bump on her left forearm on December 26, 2014. We had noticed the bump on Christmas day, but we all did our best not to panic so as to let the girls enjoy their holiday. Since that day, there have been very few holidays over the past six years where Megan has not simultaneously been dealing with the side effects of chemotherapy and proton radiation treatments. She is currently being treated for the cancerous lesion at the base of her skull that was discovered via a brain CT on November 4. Megan had been experiencing severe headaches and some slight vision issues that caused her oncologist to move her regular three month scans up by two weeks. The subsequent brain MRI confirmed the diagnosis, and since that time her medical team has been determining her best course of treatment. They settled on an experimental chemotherapy drug called Eribulin, which is generally used as a drug to treat breast cancer, but is currently in a clinical trial to treat Alveolar Rhabdomyosarcoma. Since Megan is 19, she is too old to officially be in the clinical trial, but she is being treated as if she were. Megan received her first infusion of Eribulin on November 19 and then received her second dose on the day before Thanksgiving. She had the option of waiting until the day after Thanksgiving, but when it comes to her treatment, Megan does not want any delays. She knew it could impact how she felt on Thanksgiving, but to her, it was worth it to keep her treatments on schedule. So far, her side effects of digestive issues, loss of taste, and fatigue have been tolerable. We have been down this road enough times in the past to know that the cumulative effect of chemotherapy will cause these side effect to intensity over time, but we are thankful that do date, she seems to be tolerating the treatments well. As a part of the treatment’s 21 day cycle, she gets this week off of treatment before starting the second cycle the week after. In the meantime, Megan also got her proton radiation treatments started.

As I’ve referenced in a previous blog post, this is Megan’s 6th different tumor that has been treated with proton radiation. She has also had her original tumor on her left forearm treated with traditional radiation. So in actuality, this is her 7th radiation protocol. For her current treatment, she had to once again be fitted for a radiation mask, which she absolutely hates. Because she is claustrophobic, her head in that tight fitting mask being bolted to the table is very difficult for her. As a reminder, this is what the mask looks like.

Although Megan hates wearing the mask, she was very anxious to get her proton radiation treatments started. The current tumor at the base of her skull has caused her some severe headache issues, but even more bothersome and concerning to her has been the impact it has started to have on her vision over the past two weeks. Due to the tumor pushing on a nerve that controls the lateral movement of her right eye, she is really struggling with double vision, which has gotten to the point that she cannot drive, and to see anything clearly in the distance she has to close her right eye. Due to these issues, Megan really pushed her medical team to get her five weeks of proton radiation treatments started as soon as possible. This past Monday, she went for her first treatment. She was obviously a little nervous, but like she said, she really had no other choice than to do it. Of course, she handled it like a champ and was very relieved when she came back out to the waiting room. She will receive this proton radiation treatment five days a week for a total of five weeks (25 treatments). To show how tight fitting the facemask is that gets bolted down to the table, here is a picture of her forehead about five minutes after her first treatment.

After completing three days of proton radiation on Monday-Wednesday and receiving her chemotherapy treatment on Wednesday, Megan was pretty worn out for Thanksgiving. However, having her sister home really helped to lift her spirits as they went to Starbucks together, did some online shopping, and shared their favorite recipes. While Kenzi has been away at college during a pandemic, she has become quite the cook. In addition to making homemade macaroni and cheese and chocolate croissants, she also whipped up some cinnamon yeast bread which was so good.

And here is a picture of us enjoying her baked good for Thanksgiving day breakfast.

We spent the remainder of Thanksgiving day preparing food for our evening feast; watching football; and just hanging out together. It was low key, but so much fun. Here we are enjoying our evening Thanksgiving dinner. Megan absolutely loves Thanksgiving dinner, and although she was a little bummed that she couldn’t taste the food due to a side effect from her chemotherapy, she still managed to enjoy it. Plus…I really enjoyed the pumpkin and Oreo cupcakes she made for dessert!!!

Although we were all sad that the pandemic kept our family from getting together, we did manage to schedule a Zoom meeting for the Bugg side of the family. It was so good to see everyone…even if it had to be accomplished remotely.

Kenzi had to head back to Madison, WI on Friday afternoon, but not before she got a little affection from Megan’s Boo Boo Kitty πŸ™‚

And of course, once Kenzi left, Boo Boo headed right back to cuddle with Megan…as usual.

Megan also hit a HUGE milestone this week in her advocacy and fundraising efforts. Megan has been a strong advocate for increased Federal funding for childhood cancer research as she gets so angry that only 4% of all Federal funding for cancer research is dedicated to childhood cancer. One aspect of her advocacy efforts that make me so proud is that she doesn’t just ask the government for a handout. Instead, she is also doing her part by actively raising funds to support promising childhood cancer research projects. Her latest venture was to partner with the Children’s Cancer Therapy Development Institute to raise $180,000 to fund the pre-clinical trials studies for a very promising drug to treat RMS. Thanks to the generosity of so many individuals and organizations, Megan finally reached her goal this week. It was a very generous donation from the Sebastian Strong Foundation that finally put her over the tops. Megan’s passion for her cause is what allowed her to raise this $180,000 in only 6 months. Now it’s on to the most exciting part, which is the actual pre-clinical trial studies that will hopefully pave the way for a full clinical trial. If successful, this would be the very first ever primary drug approved for the treatment of RMS!!! Here is a Zoom screenshot of Megan and I with members of CC-TDI and the Sebastian Strong Foundation having a very serious discussion about what comes next now that Megan’s fundraising goal has been reached.

I could not be more proud that during Megan’s own personal fight, she has managed to still focus on her advocacy work in an effort to make sure no more kids have to go through what she has experienced over the past 6 years. When you add this $180,000 to the other funds Megan has previously raised to support childhood cancer research, she has been directly responsible for raising about $400,000!!! Now if the Federal government would just do their part to help her.

Through the limitations of the pandemic and Megan’s cancer treatments, we still managed to find the joy of our family being together for Thanksgiving. Throughout the week, Megan went to bed pretty early as her body is pretty beat up from just two weeks of treatment. Of course she is frustrated, scared and just plain tired from her ongoing battle with childhood cancer, and there are times that she just needs some quiet time to reset herself for this beast of a mental and physical war. Thankfully, when that happens, her pets tend to come to the rescue.

There is so much going on the world right now, and at times, it can be difficult to keep a positive attitude in the face of what seems like a never-ending barrage of negativity in politics, the media, and unfortunately between people who can no longer seem to engage in civilized discussion. I have to admit that between the impact of the pandemic on society, the impact it is having on the workplace, and Megan’s relapse, I have to constantly remind myself that I have so much to be thankful for. During our Thanksgiving dinner, Megan asked if we could all go around the table and say three things that we were thankful for. As Megan, Kenzi, Deb and I all shared, there was one thing that all four us said…We are all thankful for our family. Life really is all about your perspective…

Round #1…But Really…It’s Round #115

On November 4, we learned that the tumor at the base of Megan’s skull had become active once again. Although this was devastating news, we did receive some encouraging results from the rest of her scans. Most importantly, her chest and pelvic CT, brain MRI, and full body PET scan showed no other cancerous activity except for this spot in her head. Then, upon meeting with her medical team, they have come to the collective conclusion that the tumor in her head is not necessarily a relapse, but rather it is an original tumor that was never completely killed via her previous treatments. The positive way to look at that is that if this is true, Megan really hasn’t relapsed in about a year and a half. As I’ve said many times, when you are fighting childhood cancer, you have to remain focused on the positives and not let the negatives dominate your thought process. Megan and our family are definitely seeing this news as encouraging, because Megan’s cancer has always responded favorably to both chemotherapy and especially proton radiation, so we would expect nothing less this time. The fact that she is only dealing with the one tumor is something we know she can handle. However, I never want to give the impression that Megan, our family, or her medical team are taking her current situation lightly.

The location of Megan’s current tumor is tricky, so her medical team has been carefully planning her treatment protocol. Understandably, Megan gets very frustrated with the slow pace of this planning process, because as she says, she has a tumor in her head and just wants it treated as soon as possible. Furthermore, due to the location of this tumor, Megan’s eyesight is becoming compromised, which really scares her. When she looks at anything more than a few feet away from her, she has debilitating double vision. Thankfully, she can still look at her phone with no problem, but as soon as she looks beyond that, the double vision is a serious issue for her. As a result, she is very frustrated, because once again she has lost some of her previous freedoms because she cannot drive or go outside for a walk around the block by herself because of her eyesight. She is also still getting periodic headaches that cause discomfort mostly in the late afternoon and evening. We firmly believe that her headaches and eyesight will return once her chemotherapy and radiation treatments are underway, but it is very scary for her right now. Somehow, she keeps it all together, but there I so many times that I don’t know how she does it. If I were in her shoes, I would probably be curled up in the fetal position most of the day, but that’s not in Megan’s nature. Don’t get me wrong, she has her moments where the gravity of her situation gets the best of her, but those times never last too long. She always manages to find a way to lift herself up and continue living life to the fullest. In my own life, I often reflect on her strength and do my best to emulate it when faced with adversity. I’m definitely not as adept at the skill as she, but using her as a role model has definitely made me a better person.

Chemotherapy is an awful experience. I won’t get into it too in depth again, but the fact that we use these archaic and barbaric treatments on our children is so wrong. However, due to the large pharmaceuticals completely ignoring childhood cancer due to their profit margins, and the Federal Government completely dropping the ball, these treatments are the only clinically proven options available. Like I’ve said before, if I had Megan’s type of cancer at her age, I would have been treated with essentially the same drugs that she was treated with. Just imagine if our treatment for breast cancer, prostate cancer, AIDS, heart surgery, etc. where the same as they were 50 years ago. Our society would never accept that, yet we readily accept it with our children and childhood cancer. I just don’t get it. This is why Megan has become such an advocate for childhood cancer awareness and research. It’s why she is raising money to fund the pre-clinical trials for a promising treatment for RMS, which if successful, would be the FIRST EVER primary drug approval to treat RMS (Alveolar Rhabdomyosarcoma and Ewings Sarcoma). Megan is getting so close to her goal of raising the $180,000 necessary to start this pre-clinical study as she has currently raised over $164,000 and needs just $16,000 more to reach her goal of getting this important research study off the ground. Once again, how crazy is it that kids in the fight of their lives are at the same time forced to personally fundraise for the clinical trials that could save their own lives. For what other medical condition would our country accept such a reality, and yet we are fine with our kids being forced into this situation. Surely we are better than this!!! If you are interested in making a donation to Megan’s cause, you can do so HERE.

Last Thursday morning, Megan’s experimental chemotherapy treatment got started with her first infusion of a drug called Eribulin. This drug is currently in a clinical trial through the Children’s Oncology Group, but since Megan is 19 years of age, she is not officially in the clinical trial but is being treated the same as the children who are actually part of the trial study. As is usually the case with clinical trials for childhood cancer, Eribulin is a drug primarily used to treat adult breast cancer, but they have seen some success with it in treating RMS. Due to the lack of funding and focus on childhood cancer, this is the unfortunate usual process for childhood cancer clinical trials. The money is dedicated to finding cures for adult cancer, and then they check if by chance the same treatment will just happen to work on kids as well. If Megan has her way, someday the Federal Government will actually fund the National Institute of Health to focus on saving the lives of our kids. Until that time, these clinical trials on adult chemotherapies are the best chance we’ve got.

Last Thursday, Megan went to the CDH clinic for the first of her Eribulin treatments. This drug is given on a 21 day cycle with an infusion on day #1; another infusion on day #8 and then a week to recover before the 21 day process starts over again. At this point, we are unsure how long Megan will be on this treatment cycle, because it really depends on how her body reacts to more chemotherapy. Fortunately, although the side effects of chemotherapy have tended to hit Megan hard, the treatments have always been effective in targeting her type of cancer. Therefore, we expect no different this time. Although the side effects of Eribulin are the usual when it comes to chemotherapy, Megan has responded pretty well following her first treatment. She has not experienced any nausea to date, and other than fatigue, body soreness, and a metallic taste in her mouth, she has done okay. Due to the Thanksgiving holiday, she receives her second treatment on Wednesday of this week, so we hope her side effects remain mild so she can enjoy the Thanksgiving holiday with our family. Speaking of the holiday, we are so excited that Kenzi is coming home tonight, which always lifts Megan’s spirits!!!

This was Round #1 of Megan’s new chemotherapy cycle, but in reality, it is actually Round #115. It’s hard to believe, but last week I explained how once Megan completes her upcoming five weeks of proton radiation, she will be placing her 6th handprint on the wall. During that same time, Megan has also bravely endured 114 weeks of chemotherapy. Thursday was the start of her 115th week of being treated with chemotherapy. She is 19 years old and for over two years of her life, she has been receiving these toxic and archaic drugs. In many of those weeks, she received a chemotherapy treatment for five days in a row!!! Although I have now watched her go through this for 115 weeks, there is still nothing that prepares you as a parent to watch the nurse come in wearing essentially a full hazmat suit; hook your child’s port up to an IV drip; and watch them begin to infuse the chemotherapy. It’s heartbreaking to watch, but Megan makes it somewhat more tolerable with her positive approach and brave demeanor. After her first chemotherapy infusion on Thursday, she had to remain under observation for an hour to assure she didn’t have any allergic reaction. Here is a picture of her sleeping off her first infusion.

And when she gets home, there is nothing more comforting than recovering with her Boo Boo Kitty πŸ™‚

On Monday morning, Megan starts her 5 weeks of daily proton radiation treatments. She will be wearing a mask that is secured to a table, which is very difficult for someone with claustrophobia. However, Megan knows it is a necessary part of her treatment, so she will fight her way through it. Due to the Thanksgiving holiday, Megan will receive treatment on Monday, Tuesday and Wednesday this week and then start again the Monday after Thanksgiving weekend. We are hopeful that she doesn’t receive any serious radiation burns and that the process is tolerable for her. Once again, Megan is just anxious to get the treatment started because she feels better when she knows her tumor is being aggressively treated.

Megan has been through so much over the past three weeks, and although it has been trying for her both mentally and physically, she is doing her best to remain positive. It is time for her to attack childhood cancer once again, and I know she will do so with her usual combination of determination, courage and grace. Childhood cancer is a daunting opponent, but Megan will once again be up to the task. After 115 rounds, Megan knows what to expect and she is ready for the battle. Until next week…

Keeping the Cup Half Full

It’s definitely been a trying week and a half for Megan and our family. Megan had been struggling with frequent and sometimes severe headaches for a couple of weeks, so we contacted her oncologist who asked her to come in on November 3 for bloodwork and a physical. Given her symptoms, her doctor ordered a CT of her brain that day, which he thought showed that the previously treated tumor in her clivus bone looked larger than before. He then ordered a brain MRI a couple days later, which verified that the tumor in her head was active again. Prior to determining a treatment option, her medical team needed to rule out any further cancerous activity in Megan’s body, so on November 6 she underwent a chest and pelvic CT scan followed by a full body PET scan on Monday, November 9. When you have been in this battle for nearly 6 years, you always search for the silver lining…that positive piece of news that you can grasp onto that gives you hope. Megan got that news when all of her other scan results showed no evidence of disease!!! If you have never been through childhood cancer, it might sound strange to hear a parent express relief that their child only has one tumor…but that’s exactly how we felt. Like Megan said, she has been through this so many times in the past, and knowing that she only had one tumor to be treated gave her the positive outlook she needed to once again step back in the ring against childhood cancer.

Last Tuesday, we met with Megan’s radiology oncologist who would be working on the radiation aspect of her treatment. When we arrived at the Warrenville proton radiation facility once again, it was a bit surreal. Over the past six years, Megan has spent considerable time at this facility. Even though Megan is 19, because her cancer is still categorized as a childhood cancer, her consults all take place in the pediatric examination room. The Warrenville facility is the only proton radiation center in Illinois. When you walk into the room, you see the painted handprints of children all over the wall, which signifies a child who successfully completed their proton radiation treatment. You can’t help but look around the walls and see the names and dates of all the brave kids who have fought cancer and gone through proton radiation as a part of their treatment. However, one thing you have lots of trouble finding are kids with multiple handprints on that wall. I have searched and found three kids with two handprints, but other than that, I cannot find duplicates. As unbelievable as it sounds, when Megan completes her upcoming proton treatments, she will be putting her sixth handprint on that wall. Her first handprint was put up there when she finished her initial proton radiation treatment on her left temple area, which although it is starting to fade, was completed on July 22, 2015. Since that first handprint, she has completed four other proton radiation regiments with a handprint to prove her bravery. Here are pictures I took last week of all of her handprints in chronological order.

When you see all of these handprints, there are two ways to look at it…but there is only one way Megan see them. You could look at all of these handprints with a sense of sorrow and self pity, which would of course be understandable. As Megan said to me while we were driving home from the proton center last Tuesday, “You know I have spent my entire teenage years fighting cancer.” Although this is heartbreaking, you needed to hear her tone to really understand what she was trying to convey. She wasn’t reflecting on this out of despair, but rather the inflection in her voice sent a message of pride and accomplishment. Of course it is devastating to watch your child go through this nightmare day after day; month after month; and year after year. Every one of those five handprints represents a significant challenge overcome including the wearing of a tight facemask; having your head bolted down for up to 30 minutes at a time; waking up five days a week for six weeks in row knowing you have to make the hour drive to and from treatment; the resulting nasty skin burns that accompany proton radiation; the debilitating fatigue that starts to set in after week three of treatment; and most importantly, the defeat of a cancerous tumor. It is true that life is not so much about what happens to you, but how you react to what happens to you. If there is anyone who has the right to be angry at life, it’s Megan, but she refuses to go there. As she told her radiologist on Tuesday, “I’m impatient, so let’s get this treatment started as soon as possible.” With that determination at the helm, Megan was able to get her proton mask fitting scheduled and complete this past Thursday. Although it is a challenging process for someone with severe claustrophobia, Megan was able to fight through it like a champ. As you can see from the first picture, she even managed to get a laugh out of the techs involved in the fitting process.

Six weeks of proton radiation is only one aspect of her treatment as her oncology team has decided to try an experimental chemotherapy drug on her. The tumor board at Luries Children’s Hospital in Chicago met on Megan’s case last Wednesday, and after considering numerous options, they landed on a drug that is currently in a clinical trial. Because of Megan’s age, she doesn’t qualify as a candidate for the clinical trial, but they are going to try the chemotherapy drug on her anyway because they have seen some success with it. As I’ve said many times, due to the serious lack of funding and focus on childhood cancer research, Megan has utilized all of the clinically proven chemotherapy drugs for her type of cancer. Hers is a sad reality that many childhood cancer warriors face who experience relapse. This is the reason Megan is still dedicated to her fundraising efforts to bring a very promising drug for RMS to full clinical trial. In her eyes, if the adults won’t look after these childhood cancer warriors, then she will. Currently, she is only about $20,000 short of reaching her goal of $180,000. Thank you to all of the generous individuals and organizations who have support Megan in this fundraising effort that could prove to be a landmark moment in the treatment of childhood cancer.

Although Megan was hoping to avoid more chemotherapy, her doctors felt like the combination of this drug along with proton radiation gave her the best chance of success. When Megan heard that, she once again advocated to get this started as soon as possible. Therefore, I expect that she will start her treatment early this coming week. This particular chemo drug is given on a 21 day cycle where she receives in infusion on day #1 and then again on Day #8, followed by a week off for her body to recover. If her body reacts well to the treatment, she could receive this treatment for 6 months or more. I hate to see her go through the side effects of chemo once again, but her oncology team believes the side effects should be a little more mild with this drug. Once again, in Megan’s eyes there is no time to sit around feeling sorry for herself, because there is another battle to be won.

Megan is also very anxious to get this tumor treated because it is causing her some difficult side effects right now. Her oncologists and radiologists believe that her current tumor is actually related to an original tumor that she first received proton radiation for back in 2015 (her first time around). After analyzing all of her MRI scans since her original diagnosis in late 2014, they believe that her last two tumors in and around her clivus bone are remnants of that original tumor in her head. As a result, they are going to treat this tumor with a much wider radiation field with the hopes of killing it once and for all. The good news with this hypothesis is that Megan might not have really relapsed over the past year and half. Instead, this original tumor may still be living and moving away from the spots where she has received radiation twice before. If that is true, it is very encouraging news and makes us believe that once this spot is successfully treated, Megan may have slayed the beast once and for all. Remember…when you are in this battle, you have to keep the cup half full.

The side effects Megan is experiencing are severe headaches that cause her to become nauseous. She has medication that seems to help quell the headaches, but over the past few days, they are becoming more frequent and more bothersome to her. The other effect of her tumor that is really concerning her is the impact on her eyesight. With each passing day, her eyesight is becoming a little more compromised, which understandably scares her. The issue is not so much her up close vision, but when she tries to look in the distance, she is experiencing double vision. We went to see her optometrist who has ordered glasses for her to correct the issue in the short term, which will definitely be a relief for Megan. All of her doctors believe that once they start treatment, this issue will correct itself, but in the meantime, Megan has resorted to periodically wearing an eye patch to assist with her vision. As usual, although her eyesight issues are concerning to her, she has managed to find the lighter side of a 19 year old girl wearing an eye patch.

Although it’s been a difficult two weeks for Megan, she has still somehow kept her cup half full. She fulfilled an order for some cupcakes on Saturday, which is something she still really enjoys as it takes her mind off of things for awhile.

She also decided that her Boo Boo Kitty needed a Christmas sweater, which arrived a couple days ago πŸ™‚

She also would like to thank everyone who has sent her kind words of encouragement. This week she received a couple gifts in the mail that really lifted her spirits. The kindness and support she continues to receive from everyone on “Team Megan” always lifts her spirits…especially during the tough times.

It’s been a long two weeks, but we all feel encouraged by what we have learned in the past week and a half. We know that Megan only has the single tumor in her head and no other cancerous activity in her body. We believe that this tumor is a remnant of an original tumor, which means it is not technically a relapse. We also have faith that as in the past, proton radiation will effectively treat this tumor. We also believe that just as in the past, Megan’s tumor will react positively to this new chemotherapy drug. We also believe that when Megan places her sixth handprint on the wall at the proton center, it will be her last. The cup remains half full…

The Beast Returns…Again

Fighting this battle is so hard, because childhood cancer is so unrelenting. Since December 30, 2014, Megan has been in this vicious cycle of being diagnosed with cancer; going through through the physical and mental torture of treatment; being told she is in remission; fighting to recover the life cancer tried to take from her; starting to put the nightmare behind her; only to become devastated once again because her cancer has returned. It’s on ongoing cycle of cruel and unusual punishment that seems unthinkable for a child to go through over and over again. That’s the challenge Megan has faced for almost 6 years, and for the fourth time, she has once again relapsed. It’s devastating. It’s heartbreaking to watch. It’s so unfair. However, the truth is that Megan is once again at a crossroads in her recovery from Stage 4 Alveolar Rhabdomyosarcoma. Yes..she has been here before, but that hasn’t made the past few days any easier. Cancer is such a formidable, intimidating and ruthless foe…but one thing we have learned over the years is that Megan is a worthy adversary with a level of determination, bravery, dignity and grace that far exceeds her youth. For the fourth time, the battle is about to commence once again.

Megan’s last relapse was a tumor discovered in the clivus bone located at the base of her skull. After consulting with her medical team, for a variety of reasons, it was determined that the best course of treatment would be gamma knife radiosurgery. The location of Megan’s tumor was very tricky as there are lots of important bodily functions that could have been impacted with an invasive procedure. Therefore, we chose the least invasive option with the greatest chance of success, which was the gamma knife procedure. Megan had this procedure done in June and her scans in August showed that the tumor had shrunk considerably in size, which led everyone to believe that the tumor was now inactive. Since that time, Megan has been in remission and feeling better than she had in many years. As readers of this blog know, she has started working another job at the Morris Bakery, and even started her own little cupcake business that was keeping her very busy. Check out these birthday cupcakes she made this week.

The stars seemed to be aligning as Megan was finally talking about her future and making big plans for what was ahead. Then the headaches started.

For the past couple weeks, Megan had been experiencing headaches that had all of the symptoms of classic sinus headaches. The weather had become so unpredictable and many people were experiencing sinus issues, and with some sinus medication she usually felt better. In the back of our minds we were concerned, but we were trying to stay positive. Megan had her three month scans scheduled for November 16 and 17, and we knew we would find out if anything was going on from the results of those scans. Last Saturday, Megan woke up with a terrible headache that felt much different from her previous ones. Her head started hurting so badly that it caused her to become nauseous and throw up twice. We paged her oncologist who set up an appointment for Tuesday morning. When we got to her oncologist, he ordered a CT scan of her brain, which he said looked like the tumor in her clivus might have become active again. Of course, this terrified Megan, but the doctor said he couldn’t be sure until she had an MRI so he could compare to her previous brain MRIs. Nurse Jennie worked her usual magic and was able to move Megan’s MRI under anesthesia to Wednesday morning. Although Megan was really worried about the results, she still managed to flash that smile when she woke up from anesthesia. As I’ve said many times, I firmly believe that smile is her way of telling us that she has got this under control. I continue to marvel at the fact that many times our daughter with cancer takes better care of us than we do of her.

At about 4:30 p.m. on Wednesday afternoon, Dr. Hayani called Megan with the news that she had been dreading. The tumor in her clivus bone was growing again, and was actually larger than it was prior to her gamma knife surgery. He believed that this tumor was the cause of her headaches, and obviously, we needed to come up with a treatment plan. As usual, Megan listened on the phone to what her doctor had to say; asked a few questions about what would happen next; and then hung up the phone, looked at me and said “Well, that sucks.”

The next step is to verify that this tumor in her clivus bone is the only cancerous activity in Megan’s body. She received her chest and pelvic CT on Thursday morning. Her doctor also took a bone marrow biopsy while she was under anesthesia for her brain MRI. Thankfully, the results of both of those tests were negative, which was a step in the right direction. She also has to get a full body PET scan, which is the final step in ruling out any further cancerous activity in her body. Megan is obviously anxious to get things moving along as quickly as possible, so when she was told that this coming Thursday was the earliest they could get her in for a PET, she decided that was unacceptable. She ended up calling the cancer center herself and somehow managed to talk to the right person who moved her PET scan to tomorrow morning at 7:30 a.m. She also spent the day on Thursday contacting doctors she has connected with from all over the country to discuss her relapse and seek options. Over the past six years, Megan has been forced to grow up much faster than any teen should. She has gone from being a painfully shy 13 old with childhood cancer to a mature 19 year old with childhood cancer who has become her own best advocate. Megan copied me on an email exchange she had with one of her doctors, which I think sums up her entire approach to these past six years. The email read,

I really want everyone involved with my case to be positive. I truly believe in my body and it’s ability to heal. Things could be a lot worse than they are right now. I just hope everything gets moved along as fast as possible. Proton radiation has always worked for me so I’m going to be confident that it will work again.

All of Megan’s scan results should be read by the time we meet with her medical team at 1:00 p.m. on Tuesday, which is when we will discuss options and develop her treatment plan. As readers of this blog know, Megan’s chemotherapy options are limited to experimental options because she has already run through everything that is clinically proven…which due to such little research on childhood cancer, is a very small list of drugs. At this point, all options are on the table which in addition to experimental chemotherapy includes proton radiation and/or surgery. We will know much more after Tuesday’s consult.

To say it has been a tough week would be an understatement. Megan was obviously devastated by the news, and is still experiencing serious headaches and even starting to notice some vision changes, which is really scaring her. We had to call her sister, Kenzi, at the University of Wisconsin, and tell her the news that Megan had relapsed. That is always such a hard call to make, because the last six years have been very hard for Kenzi, and it was so difficult for her to be three hours away from family when she received this news. Considering all of the stress she has been under during Megan’s battle with childhood cancer, it is remarkable that she has been able to keep it all together and achieve all that she has. She is an amazing sister and daughter, and we are so proud of her. Deb and I are trying to traverse this with Megan in the midst of a pandemic knowing that if she has to receive chemotherapy, we will all most likely be confined to our home due to the impact chemotherapy has on the immune system. Our family has been here before, and we know what we are in for, but that doesn’t make going through it any easier. Childhood cancer is a monster!!!

The good news is that we all have Megan’s lead to follow. Through all of the anxiety and disappointment, Megan somehow manages to take a moment to process everything and then move forward with a determination that is other-worldly. Of course she has her moments when the gravity of her reality gets the best of her, and when she does, she tends to lean on her pets for support.

And sometimes when the headaches get to be a little too much, she curls up for a well-deserved nap

However, she never allows herself to wallow in self-pity for long. In fact, as I type this blog post, she is at the kitchen table playing games with her mom and Makenna Emerson (who continues to be such a important source of friendship and support to both Megan and Kenzi).

Megan continues to believe in herself. She continues to believe that eventually she will defeat this beast once and for all, and given her track record of success, who am I to ever doubt her? It all seems so unfair, but to Megan, this is just another necessary evil that she must overcome on her way to a full recovery from childhood cancer. I know Megan continues to be inspired by all of the love and support she receives from everyone on Team Megan. Your kind thoughts and prayers for her are appreciated more than we could ever express. As Megan prepares to step in the ring to battle cancer once again, we will continue to focus on winning each day as it comes; we will continue to find the beautiful moments that each day offers; and we will continue to find a reason to dance in the rain. Here we go again…