It’s About Something Bigger

As Megan has traveled her six-plus year battle with Stage 4 Alveolar Rhabdomyosarcoma (ARMS), it has been amazing to watch her take her personal battle to a much larger stage. As Megan has valiantly fought for her own life, she has voluntarily taken on the similar battles being fought by other brave kids all over the country and the world. The more she learns about the uphill battle facing kids with this vicious disease, the more passionate she becomes in fighting for the cause. Of course she is angry that childhood cancer has been a largely forgotten disease by our Federal government and its leaders, but instead of wallowing in her own self-pity, she has made it her mission to make a difference. When Megan was first diagnosed as a 13 year old eighth grader, she was one of the shyest, most introverted young people you could find. However, as her passion for this cause grew, so did her determination, courage, and ability to be not only her own best advocate, but an effective and passionate advocate for childhood cancer fighters everywhere. Of course there are still times like the past five months where a relapse causes her advocacy work to slow down, but during the times she is feeling better, she is right back to spreading the word to anyone who will listen…and to those decision-makers in our Federal government who for some reason keep talking a good game, but take no action to save these kids.

Thanks to the assistance of so many people and organizations, Megan has now raised over $400,000 to support direct childhood cancer research. When choosing research projects to support, Megan always finds a method to provide direct funding to a doctor/researcher because she doesn’t want any of her funds to be siphoned off to administrative costs or other organizational expenses. To date, she has supported research projects focused on Alveolar Rhambdomyosarcoma at Luries Children’s Hospital in Chicago and through the Children’s Cancer Therapy Development Institute in Portland, Oregon. Most recently, Megan completed funding that allows CC-TDI to conduct pre-clinical trial studies on a drug, which was originally developed as a treatment for breast cancer, but the CC-TDI lab has found effective in stopping RMS from becoming immune to chemotherapy treatments. Megan’s fundraising efforts resulted in $214,722 which will fully support this promising research project that is currently underway. But of course…Megan is far from satisfied…

Dr. Charles Keller is the lead researcher at CC-TDI and over the past year, he and Megan have communicated quite frequently. I have also had the pleasure of talking with Dr. Keller on numerous occasions and he is really a remarkable scientist and an even better person. He has dedicated his life to finding more effective and less toxic treatment options for childhood cancer. In fact, CC-TDI is the only independent research lab I am aware of whose mission is completely focused on childhood cancer research. Over the past year, Dr. Keller has become an important source of information for Megan and her personal oncology team as Dr. Keller frequently communicates with Megan’s own oncologists. One thing I have realized during Megan’s Journey is how well childhood cancer doctors share and collaborate on cases. They all have one goal, which is to save young lives, and pride never gets in the way of collaboration between them. In the childhood cancer community, it is a common trait that I appreciate and admire.

Over the past month, Megan told Dr. Keller that she wanted to start raising funds for another research project focused on Alveolar Rhabdomyosarcoma. Megan’s previous project is going to be very long-term because it will have to go through not just the pre-clinical trial phase that Megan funded, but also through a full clinical trial phase that could take years. This time, Megan wanted a project that could provide some immediate hope and relief to current childhood cancer fighters like herself and so many of her friends. After much discussion, she and Dr. Keller landed on an ideas that is best explained directly from the text of her new fundraising page.

The goal of this project is to bring consumer (patient)-level participation and accountability to a new, strategic approach to developing, testing and prioritizing new rhabdomyosarcoma drugs for incorporation into cooperative group clinical trials. Unfortunately, many RMS patients do not have the luxury of time. Therefore, all studies will be focused on testing existing FDA-approved or already clinically-investigated drugs with the goal of repurposing them for quick transition to treat RMS.

Megan was excited about this because if a drug that is already FDA approved proves effective in treating ARMS, then the drug could quickly be repurposed to help current childhood cancer fighters much quicker. Of course, Megan still wasn’t satisfied, because she knew that Dr. Keller and his CC-TDI team rely on private funding and they are working on multiple projects at the same time. Therefore, Megan decided that she not only wanted to fund this research, but also fund the salary/benefits of a new full-time researcher whose only job would be to test these drugs. Therefore, Megan is very excited to announce that her new fundraising page is now live with the goal of raising $233,000 to fully fund this exciting new research project. Of course that is a lot of money, but I’ve also learned that once Megan sets her mind to something, it’s going to happen. I encourage everyone on Team Megan to take a look at her new fundraising page and share it with as many people as possible. This has the potential to make a difference in the lives of so many young people who are desperately searching for hope in the daily fight for their lives.

Speaking of fundraising, Megan is very excited that the “2nd Annual Team Megan Bugg Golf Outing” will be held on Saturday, June 12 at the Nettle Creek Country Club in Morris, IL. Last year, this event raised over $20,000 for childhood cancer research, and Megan is determined to increase that amount at this year’s event. Thanks to the generosity of so many people, all 40 golf foursomes are already filled, but if you want to be placed on the waiting list, please contact Tim Jezik at the number on the flyer below. The event also raises significant funds through a gift basket raffle held at the end of the golf outing. If you or your organization are interested in donating a gift basket, you can either direct message Megan on Facebook or contact Tim Jezik (number below). The event is also accepting hole sponsorships and other corporate sponsorships, so once again, please contact Megan or Tim if you are interested. Every dollar raised at this event will go towards Megan’s new fundraising project, which has the potential to save so many young and promising lives.

On Saturday morning, Megan was asked by U.S. Congresswoman Jennifer Wexton to participate in a Facebook Live roundtable to discuss Federal legislation aimed at providing more support for childhood cancer research. I had the pleasure of listening to these passionate childhood cancer survivors plead for more funding, and it was a very powerful and emotional experience. Of course, I was extremely proud of Megan for once again becoming involved in childhood cancer advocacy at the national level as she articulately explained her story and made her case. As usually happens with most all events like this, she didn’t get the opportunity to say everything she wanted, so I thought I would give her that voice here. Megan had prepared a statement on the fact that childhood cancer is not rare, but there was not enough time for her to articulate this message during the event. Here is her message…

One of the most common and misunderstood thoughts about childhood cancer is that it is rare and doesn’t impact many kids.  This could not be further from the truth because everyday there are 46 kids diagnosed with some form of childhood cancer which is 16,790 children per year.  Within that number, 1800 kids are failed by our country’s lack of attention to childhood cancer and they tragically lose their lives.  Cancer is definitely not rare because it is the leading cause of death by disease for kids.  The number one cause of death in children are accidents and second is childhood cancer.  In the past 40 years, the number of children diagnosed with leukemia has increased by 35%.  If anything, this disease is becoming even less rare.

It is true that more adults get breast cancer and prostate cancer each year, but this is where you have to consider productive years of life lost.  The average age that an adult is diagnosed with cancer is 66 versus the average age a kid gets cancer which is 6.  Therefore, although tragic, a person with prostate cancer on average loses 10 years of productive life.  A person with breast cancer on average loses 18.8 years of productive life.  Compare that to a victim of childhood cancer who loses a staggering 68.3 years of productive life.  Through social media, I have met so many amazing childhood cancer fighters.  Unfortunately, over the last six years childhood cancer has taken 18 of my friends.  Those 18 young lives accounted for 1,229.4 years of productive life lost.  When you think about childhood cancer in terms of productive years of life lost, the disease is definitely not rare.  In fact, if we were able to cure childhood cancer, it would be the same as curing BOTH breast and prostate cancer in terms of productive years of life saved.  But for some reason that doesn’t seems to make any sense, the government spends more on researching cures for just prostate cancer than for all 13 types of childhood cancer combined.  The National Institute of Health spends about $5 billion annually to research all types of cancer, but have decided children are only worth 3.8% of that huge amount of money.  Given that so many precious years of life are at stake, why aren’t we doing more?

On Thursday, Megan started her 7th round of the current experimental chemotherapy treatment she is on for her 4th relapse. Thursday marked Megan’s 131st week of total chemotherapy treatments. Although she is tolerating this treatment pretty well, each passing weeks results in her taking just a little bit longer to bounce back. She ended up sleeping most of the day on Thursday, and on Friday morning she couldn’t make her way out of bed until almost 11:30 a.m. However, by Friday night she was feeling better. Although Megan dreads each week of chemotherapy, this week’s treatment was made a little easier because her friend LeAnna had come to visit her.

Megan met LeAnna at Curefest in November, 2020 and they have been fast friends ever since. LeAnna has never had childhood cancer, but she has become a passionate advocate for the cause. She is in college to be a Child Life Specialist and also runs an organization that provides gift baskets to childhood cancer patients. She also was the mastermind behind getting Saturday’s Facebook Live event organized. Since Curefest, she and Megan have communicated consistently, so when Megan heard that LeAnna wanted to come visit her for a few days, she was ecstatic! LeAnna flew in from her home in Richmond, Virginia on Monday morning and went back after Megan’s chemo treatment on Thursday. To say Megan had fun would be an understatement. The best way to show how much fun she had is through these pictures.

This Thursday, Megan heads back to CDH for another round of chemotherapy. In the meantime, she plans to continue fighting for something bigger than herself. Today she is fighting for the 46 kids who will find out that they have childhood cancer. Tomorrow, she will fight for the next 46 kids, because to Megan, these kids deserve so much better than we are currently giving them. Make no mistake…childhood cancer can be cured. We just have decide that today’s 46 kids are worth it. Megan thinks they are…do you?

Until next week…

Gamma Knife and Recovery Week

It seems like I am a broken record in saying this past week was a very big one for Megan. When you are fighting this disease, there aren’t many opportunities to have a down week because it seems there are momentous treatments, scans, and tests that occur far too frequently. It’s all part of the nasty roller coaster ride that defines childhood cancer. During this journey, there are so many times that it feels like we are all holding on for dear life as that roller coaster races down a hill. There are also so many of those anxious moments when you have no idea what is coming up around the next corner as you await the results of a scan, lab work to come back, or for her oncologist to complete a physical exam. It seems like the childhood cancer roller coaster ride gives you very few moments to actually catch your breath and recover both physically and mentally, but when those moments arise, you have to be ready to take advantage. Over the past six years and three months, Megan has become quite adept at taking full advantage of recovery week.

Monday was a huge day for Megan as she was scheduled to receive gamma knife radiosurgery on the tumor located at the base of her skull. On Friday, March 26, Megan finished her 17th and final proton radiation procedure on that same tumor, which overall was her 197th proton radiation treatment. Although it was a tremendous achievement for her to complete her treatments, it felt a little different because she still had the gamma knife procedure on Monday that was weighing on her. Megan previously had a gamma knife procedure on another lesion in her clivus bone in mid-June, 2020. For that procedure, her doctors put her under anesthesia because they knew her claustrophobia would make it very hard for her to endure the halo that would be screwed into her skull to keep her head immobile for the 45 minute procedure. Due to technological advances in the gamma knife procedure, Megan’s radiologist told her that they now could complete this treatment with a radiation facemask as opposed to the halo. For the proton radiation treatments on her head, Megan has been wearing a facemask daily for about 25 minutes at a time, so she decided she wanted to try the gamma knife procedure without anesthesia. She was very nervous about it because she first had to be fitted for the facemask, which would take about 20 minutes, and then she had to have her head bolted down to the table and be in the gamma knife tube for 47 minutes of treatment. She was determined that she could do it, but she was also quite anxious about it.

On Monday, we headed to the cancer center in Warrenville for her treatment. She first went to the CDH clinic where they accessed her port and gave her a dose of Ativan to help her relax. Megan was still nervous, but while she was at the clinic, she found out that Nurse Kathy was going to accompany her to her treatment and be there with her the entire time. That was such a relief to Megan!!!

I need to take a moment to explain what Nurse Kathy has meant to Megan and our family. Kathy is the Nurse Practitioner for Megan’s oncology team, and from the first day of Megan’s diagnosis, Kathy has been right there by Megan’s side. I will never forget in March, 2015 when Megan had to go to the hospital for serious mouth sores caused by her chemotherapy treatments. It was awful as Megan was in so much pain that she didn’t eat for three days. While in the hospital, Megan’s condition deteriorated and Nurse Kathy came to see her. Kathy knew something wasn’t right and she wouldn’t rest until she got Megan into Intensive Care and paged her oncologist to get there immediately. Megan ended up with sepsis, which resulted in some intensive and immediate medical procedures that most likely save her life that day. I am convinced it was Kathy’s quick actions that saved her. Megan has Kathy’s cell phone number and anytime she is worried about something, she immediately texts Kathy who never fails to respond…even on weekends and holidays. Kathy has become such a part of our family that even Kenzi isn’t comfortable with any medical issue she encounters without Nurse Kathy’s input. Kathy is a very busy professional and to think that she set aside the majority of her day to make sure Megan got through her gamma knife procedure tells you everything you need to know about how much she cares. She is such a special person to Megan and we could never adequately repay her for everything she has done for Megan and our family.

Unfortunately, Megan’s gamma knife procedure was delayed for two hours, which didn’t help her anxiety at all. Megan was so worried that her Ativan would wear off and she wouldn’t have anything to help her relax during the procedure. Fortunately, as she has done so many times before, Nurse Kathy talked to the right people and came up with a plan to put Megan more at ease. They also let Deb go back with Megan, which really helped her as well. Between her mom and Nurse Kathy, they were able to support Megan as she powered her way through this very difficult procedure. Megan has an unbelievable ability to dig down deep when she has too in order to get through most any challenge. Her mental toughness, resiliency, and ability to stay positive in the face of extreme adversity are legendary to me. When faced with the challenges Megan has endured, there were so many times I don’t believe I would have possessed the mental toughness to keep fighting, but the thought of surrender is just not in Megan’s DNA. My admiration for her grows daily as I really don’t know how she does it.

Megan was exhausted after her long gamma knife ordeal on Monday, but the timing was perfect because this was her recovery week from chemotherapy. Her current chemotherapy treatment cycle calls for two weeks of treatment and then a week of recovery to allow her blood counts to recover. I can tell you from numerous years of experience that there is nothing better than those recovery weeks. Megan is a different person during these weeks as she isn’t dealing with the extreme level of exhaustion and other side effects she experiences in the days following a chemotherapy treatment. During a recovery week, she is much more active as she plans things to do and in general has a much higher energy level. This week was no exception as Megan had a variety of things planned during the days following Monday’s gamma knife procedure.

Megan has become a huge proponent of saving the environment, and as I posted last week, she bought us each a tool so we could go different places and pick up garbage. Her first goal was to clean up the area along the I&M canal near Rt. 47 in Morris. Megan likes to go there to walk and when she does, she often sees a muskrat swimming around near a group of fallen branches along the shore. She was appalled when she saw the amount of garbage that had accrued in that area, so she was anxious to get over there and clean it up. Unfortunately, the weather wasn’t cooperating earlier this week as it was so windy and cold, but on Friday, it warmed up enough that she was ready to go, so on Friday late afternoon the three of us headed over for our first clean-up duty. We spent about an hour cleaning up along the shoreline and left with a huge, but satisfying, bag of garbage. Megan was so happy and was already planning where to clean up next. As Megan tries to help her body recover from the ravages of chemotherapy, this is a great way for her to get some exercise.

A few months ago, Megan started her own little cupcake business. Baking is something Megan really enjoys, and she also likes the creative process of decorating cupcakes. Her business gave her something to keep her busy during the day, but once she relapsed, she couldn’t commit to her customers because she never knew how she was going to feel from day to day. Therefore, it was very refreshing to see her baking again on Saturday as she took a few orders from friends and then made a few extra Easter-themed cupcakes to sell. She ended up making 6 dozen and she had a great time doing it. Hopefully, she can get past these treatments soon so she can reestablish her cupcake business.

Also on Saturday, Megan was able to get her second COVID vaccine. This was a huge occasion for her because throughout this whole pandemic, Megan’s compromised immune system meant she had to be extra cautious. So far today, other than being tired and having a sore arm, she hasn’t experienced any negative side effects. Kenzi also gets her second vaccine on Tuesday, so then our entire family will be vaccinated, which will be a huge relief.

Kenna Emerson was home for the Easter weekend, so she hung out with Megan to watch the Final Four basketball games, which was so much fun. Megan has always loved everything LA, so it was no surprise when she adopted UCLA as her team all the way back to their play-in game against Michigan State. It has been fun watching UCLA make their way to the Final Four and last night’s game was so exciting. Megan was pretty bummed when UCLA lost, but Kenna, Megan, Deb and I had a blast watching such an amazing game. Hopefully I can keep Megan interested in watching the championship game even though her Bruins won’t be playing.

We hope everyone has a very happy Easter. Due to Megan receiving her second COVID vaccine yesterday, we didn’t plan much for today because we didn’t know how she would feel. However, it will be nice to just hang around the house enjoying the beautiful weather, and basking in the relief of recovery week.

Until next week…

Megan posing with one of her Easter basket gifts 🙂

The 7th Handprint

During Megan’s 6 year and 3 month journey fighting Stage 4 Alveolar Rhabdomyosarcoma, she has undergone a multitude of treatments. Fortunately for her, proton radiation has been one of the most effective treatment options because her tumors have never failed to react in a positive manner to such treatments. Luckily, Megan’s relapses have all been in areas that could be reached via proton radiation, which is why as of this past Friday, Megan has undergone a total of 197 radiation treatments to various parts of her body. Every time Megan completes a treatment cycle, the achievement is marked with a handprint on the wall of the pediatric treatment room at the Northwestern Proton Center in Warrenville. I have now watched her place seven handprints on that wall, and each time I watch her do it, I run through a full gamut of emotions.

The wall of the treatment room is full of children’s handprints as Warrenville hosts the only proton radiation center in Illinois. Therefore, kids from all over the State, and even the entire midwest, travel there for their cancer treatment. I have spent so much time in that exam room with Megan, and every time I am there I can’t help but look at the handprints one by one as I try to picture what each of those kids looks like and the emotions they must have felt going through their cancer treatment. It was after Megan’s third handprint that I remember looking to see if anyone had three handprints on that wall, but I couldn’t find anyone. As she placed her 7th handprint on the wall, I quickly reflected back on everything she has overcome and the incredible courage and tenacity she has shown to once again complete another proton radiation protocol. Megan hates getting up at 5:30 a.m. every morning to get to the proton center for her 6:40 a.m. treatment. She disdains wearing that awful facemask and having her head immobile and bolted to a table for 25 minutes. She hates the exhaustion she feels by the end of the week, which is caused by a combination of early mornings and side effects from the radiation. She has been through this so many times before that when she starts a new treatment protocol, she knows exactly what she is about to endure, but in her mind, there is never a doubt that she will get through it. Her proton radiation treatments are just another necessary evil to face and overcome on her way to finally beating childhood cancer once and for all. Here are pictures of Megan’s previous six handprints, the first of which was placed on July 22, 2015. That handprint is getting so old that you can barely see where she wrote her name and the date underneath.

For this particular proton radiation protocol, Megan was originally scheduled for 25 treatments, but her radiologist decided to alter her plan and stop her treatments at 17. He is then going to follow up with a gamma knife radiosurgical procedure on Monday, March 29, which will complete her radiation treatments for this relapse. Gamma knife radiosurgery uses specialized equipment to focus about 200 tiny beams of radiation on a tumor or other target with extreme accuracy. Each beam has very little impact on the tissue surrounding the tumor, but because all of those radiation beams meet at the target, the process delivers a strong dose of radiation on that tumor. The advantages of this type of radiation are that it can be completing in one treatment and it delivers very little damage to the healthy tissue surrounding the targeted tumor.

Megan had a gamma knife procedure completed in June, 2020 where she was put under anesthesia to make it easier for her to tolerate the halo that was screwed into her skull, which kept her head completely still. In nine short months, the technology has already changed to wear Megan no longer has to be fitted for a halo, but instead can go through the procedure with a facemask similar to what she wears for her proton radiation treatments. Once again, Megan hates the facemasks, but she wants to try and get through this procedure without going under anesthesia. Given her past issues with claustrophobia, she is obviously concerned about wearing the facemask for 45 minutes, but she believes that with a little medication to help her relax, she can get through it. I know she would appreciate it if everyone on Team Megan could send her positive thoughts at 10 a.m. on Monday morning as she prepares to power through her gamma knife procedure.

And here are some pictures of Megan placing her 7th handprint on the wall.

And here is that monumental 7th handprint.

Megan continues to receive such amazing support from childhood cancer organizations from all over the country. When you are going through the physical and emotional trauma these kids experience on a daily basis, getting that little gift in the mail provides such a moment of joy for them. Megan recently received this blanket, which was really special to her given that her recently deceased friend and fellow childhood cancer fighter Campbell was such a lover of cows.

Saturday was my birthday, and I received the best gift ever, which was the chance to spend time together with our family. Megan, Deb and I left pretty early Saturday morning to make the drive up to Madison, WI to have lunch and spend some time with Kenzi. We picked her up from her apartment and headed out to lunch, which of course included some authentic Wisconsin cheese curds. We then headed out for some shopping, which meant a trip to the girls’ favorite grocery store, Trader Joe’s. We got Kenzi stocked up on supplies and then made a couple more fun stops. First, we went to a new cookie shop called “Crumbl Cookies”, which I will admit was pretty awesome.

We then headed over to “Crescendo”, which is the coffee shop Kenzi has been working at this year. Kenzi recommended I get a cold brew coffee with vanilla and orange bitters, and she didn’t steer me wrong. It was amazing!!!

Of course, the girls took care of me with birthday gifts like they always do, but no gift is more precious than spending quality time with my family. I will always treasure these moments.

Speaking of birthday gifts, Megan likes to go over to the I & M Canal path in Morris to walk and take in nature, and if she’s lucky, see some wildlife. There is a muskrat that she always sees in the same spot near the shore of the canal. When we walk there, she gets so angry when she sees litter along the path, and last week she was especially irritated when she saw the muskrat swim out from amongst a plethora of garbage. In the past, we have talked about how we should do our part to help clean things up. Well…Megan decided it was time to take some action as she bought us these tools for my birthday so we could start cleaning up litter on our walks. She has such a huge heart 🙂

The “2nd Annual Team Megan Bugg Golf Outing” to benefit childhood cancer research looks like it’s going to be another huge success. All 40 of the foursomes are filled, and we have started a waiting list for the June 12 event at the Nettle Creek Country Club in Morris, IL. There are still opportunities for hole sponsorships and other sponsorships, so if you are are interested, please contact Tim Jezik at 815-679-8149. Megan is so excited for this year’s event, as she always looks forward to riding around on the golf cart to thank everyone for helping her end childhood cancer.

This is another big week for Megan as she gets ready to power through her gamma knife radiation procedure on Monday morning. Although she will continue with her current chemotherapy cycles for the foreseeable future, finishing radiation will be a welcome respite from the daily grind of treatment. Thank you again to everyone on “Team Megan” for your continued support of Megan as I know it means so much to her.

Until next week…

Reconnect & Keep the Faith

The COVID pandemic has been difficult for everyone, and our family has been no exception. When you have a child fighting cancer, quarantining is no stranger as over the past six years and three months we have had to do it often. One of the effects of chemotherapy is that it attacks the white blood cell count leaving the patient much more susceptible to infection. Throughout Megan’s 130 weeks of chemotherapy treatment, there have been numerous times where her white blood cell count was down to almost nothing. It was during those times that we had to essentially lock her down because any exposure to infection could have been life threatening. When her ANC was low, we kept visitors to the absolute minimum, and those people who did come over had to wash their hands and be free from any symptoms of illness. Those quarantines would last for a week to 10 days maximum before her blood counts would start to recover for the next round of treatment, and then the process would start all over again. Other than the constant traveling to treatment, hospital stays, and physical side effects of chemo, the other reason Megan could not attend school during treatment was the danger of exposure to infection. Although such quarantines were not fun for her, it was a necessary part of the childhood cancer treatment process. Being wary of infection was nothing new to our family, but as it was for so many others, the length of the pandemic quarantine was difficult…especially because it kept us cut off from family. Due to a combination of Megan’s treatments and some health concerns regarding her grandma, we had not seen Grandpa and Grandma Bugg in person since Christmas, 2019. Although we stayed in touch via FaceTime, it was not the same as seeing them in person at the farm. We were excited when the COVID vaccinations finally allowed us to reconnect with them on Saturday. It was definitely long overdue.

Megan had her proton radiation treatments at 6:40 a.m. on Monday through Friday of this past week. As of Friday, she has completed 12 of her 17 treatments. She was originally scheduled for 25 treatments, but her radiologist decided that the more effective approach would be for her to complete 17 treatments and then undergo a one day gamma knife radio-surgical procedure on March 29. That means Megan will have her last 5:30 a.m. wake-up call on Friday, March 26. Although Megan is not too thrilled about wearing a facemask throughout the gamma knife procedure, she knows it’s something she will have to fight through to complete her radiation treatments. After that, she will complete her seventh three week cycle of chemotherapy and then have her next set of scans.

So far, Megan has been handing her experimental chemotherapy treatment pretty well. She started her 6th three week cycle this past Thursday. In fact, she had a very busy Thursday morning as she had to be at the proton radiation center for treatment at 6:40 a.m., followed by an appointment at the Wheaton Eye Clinic at 8:15 a.m. While at the eye clinic, Megan received some much needed good news about her eye. The tumor being treated at the base of Megan’s skull caused some damage to the nerve that controls the lateral movement of her right eye. This resulted in her having debilitating double vision which made it impossible for her to drive, watch TV, and anything else that required her to look into the distance. Her close up vision was okay, but past about five feet, the double vision was really tough on her. As a result, Megan hasn’t driven since November, 2020, which has stolen much of her independence and freedom. She has to rely on friends and family to get her places, which at times has been extremely frustrating for her. She was also concerned because if her eye did not improve, she would have to undergo a surgical procedure to fix the issue. Over the past couple weeks, Megan thought that her eye might be getting better, because when she awoke each morning, she could see without the double vision issue for about 10 minutes before her right eye would start to stray and she would need her corrective glasses again. At Thursday morning’s appointment, the eye doctor verified Megan’s thoughts as he said her eye is improving. He was able to reduce the prism in her right eye and said if her improvement continued, she could avoid surgery. Megan was thrilled to hear that, and she actually said that with her corrective lenses, she thinks she could drive again. Her doctor agreed, and although we will start slow, being able to drive would be such a relief to Megan. Over the past six years, Megan’s body has shown an uncanny ability to heal itself, so hopefully the improvement of her eye continues.

Following Thursday’s proton radiation and eye doctor appointments, Megan then had to head to the Central DuPage Hospital Oncology Clinic for the first dose of the 6th round of her chemotherapy treatments. As always, the nursing staff and other healthcare professionals there make Megan feel like a part of their family. Somehow, they always make such a difficult and emotional process somewhat bearable. I want to give a special shout out to Megan’s Child-Life Specialist, Aileen. Megan got to know Aileen when she was the Child-Life Specialist at the proton center, and I will never forget the day a couple years ago when Megan had to start another round of proton radiation that required her to wear another awful facemask. Megan was even more nervous because the only time they could fit her appointment in was during evening hours, and she didn’t know any of the radiation techs who worked there in the evening. When we showed up at the proton center for her evening appointment, I couldn’t believe when Aileen was there to greet Megan at the door. She had already worked a full shift that day and actually came back to work in the evening just to be there for Megan and help her through that initial treatment. When Megan found out that Aileen was being transferred to the CDH oncology clinic, she was thrilled. Every time Megan is there for her treatment, Aileen always makes time to talk with Megan. Aileen is just another of the many special healthcare professionals that have become a part of Megan’s family. We will always be thankful that she is a part of Megan’s life.

Although Megan is tolerating her chemotherapy treatments well, the combination of early mornings, radiation and chemotherapy is taking a toll on her stamina. There are not many days that go by where Megan doesn’t come home and need a recovery nap, and when she does, her pets are always eager to assist.

Megan knew she would be really tired, but she was determined to make the three hour trip south on Saturday morning to see Grandpa and Grandma Bugg at the farm. On our way down, we stopped in Decatur to bring Monical’s Pizza for lunch, because we know that is Grandpa’s favorite. On the drive down, Megan also called in a special favor from Grandpa. Although there is no longer any livestock on our family farm, Megan knew Grandpa could hook her up to pet some cows…and of course…Grandpa came through like I knew he would. When it comes to his granddaughters, no favor seems to be too big 😉

Of course, while playing with the cows, Megan managed to find a dog to pet as well.

Megan has always liked cows, but her affinity has only grown since her good friend Campbell passed away. Campbell loved cows, so just a few days ago, Deb surprised Megan with a little stuffed cow to help her remember Campbell. In her honor, Megan named her new stuffed animal Bell. She put a very sweet post about it on her Facebook page.

Megan misses Campbell terribly, but takes comfort in knowing that she is yet another guardian angel looking out for her during this battle.

We had a great visit, and although we couldn’t stay too long, it was so refreshing to see Grandpa and Grandma again. Reconnecting with family is yet another sign that brighter days might just be ahead.

It’s been another challenging week for Megan as the cumulative effect of proton radiation and chemotherapy is taking a toll on her stamina. However, there was good news this week as her eye is showing improvement, and most importantly, we finally got to reconnect with some family. We are so hopeful that in the days and weeks to come, we can see more of our family and begin to realize some sense of normalcy. Fighting childhood cancer at any time is a challenge, but doing so during a pandemic just adds one more unnecessary stressor to Megan’s life. Megan has never lost faith that there is a light at the end of the tunnel, and although it’s been a very long journey, that elusive light is shining brighter.

Keep the faith, hold on. It might be stormy now, but it can’t rain forever.

Keep the faith…

Cancer Never Rests

Throughout Megan’s Journey, I have found myself assigning human characteristics to childhood cancer. When you are living this journey day in and day out for the past six years and three months, the disease becomes a part of your life. It feels like a living, breathing organism because there is not a day that goes by where it doesn’t impact your life. For Megan, this beast is like an evil sidekick that is constantly whispering in her ear. Every day, Megan is checking what she thinks might be a new bump, ache or pain, and for that day, the anxiety dominates her thoughts. I’ve said it so many times before, but I really don’t know how she does it. I don’t know how she puts the negative thoughts out of her head and instead remains able to find the beautiful moments in every single day. She is so much stronger than me, and I admire her positive outlook and tenacity for life more than I could ever express in words. That being said, as a parent, there are times that I just want her to get a break from the daily grind…but as you travel this journey, you find that cancer never rests.

Megan is currently receiving both chemotherapy and proton radiation for the tumor at the base of her skull. Megan was previously treated for a tumor in her clivus bone, but after a three month scan, her radiologist found that there were two different small locations where that tumor had grown beyond the original radiation field. Of course Megan was devastated, but as usual, her thoughts quickly went to getting her treatment plan developed as quickly as possible. A week ago Thursday, Megan started her proton radiation treatment which was to consist of 25 treatments to three different fields at the base of her skull. I know I’ve shown pictures of Megan following her proton radiation treatments in the past, but wearing that facemask is so tough. Because this treatment consists of three different fields, Megan has to be bolted to the table longer than she has in the past, so it’s been a little more challenging for her. There was one time this past week where she said she needed a break and they had to take the mask off of her for a few minutes and then start again. However, that has been the only time she has been unable to power through. Every weekday, Megan has to leave the house at 5:30 a.m. to get to the proton center in Warrenville by 6:40 a.m. for her treatment. Every time she comes out from her treatment, my heart breaks when I see the honeycomb imprint on her face left from the radiation mask.

The picture above is following her treatment on Tuesday, which was taken while she was waiting for her weekly consultation with her radiologist. During this meeting, he showed Megan her most recent scans, and said they actually found a third small area where the tumor had grown outside of the previous radiation field. He told her that it was treatable, and her current radiation field was treating that entire area. However, he also told her that he wanted to adjust her treatment plan slightly. Instead of giving her 25 treatments, he wanted to reduce the treatments to 17 and then follow that with a gamma knife radiosurgical procedure to one of the locations. Megan has been through this before as she received gamma knife surgery in June of 2020 while under anesthesia. Technologies change quickly, because in June Megan had to have a halo screwed into her head which kept her head still during the procedure. Megan’s radiologist explained that now they can do the procedure with a facemask like Megan wears for her proton radiation. Although Megan was still concerned about her claustrophobia, she of course said that she would do whatever it takes. Therefore, tentatively, Megan is scheduled to be completed with radiation in time to undergo another gamma knife procedure on March 29. It was another in a series of recently difficult meetings for Megan as she learned that there was actually a third location of tumor, but fortunately, her radiologist believes this plan will be effective.

Megan powered through her proton radiation treatments for the rest of the week, and once her treatment was over on Friday morning, she was really looking forward to two days off to rest and recover over the weekend. Remember when I said cancer never rests…

On Friday at around 5:00 p.m., Megan started to complain of a headache. Megan has had migraines in the past, and given the amount of stress and anxiety she faces daily, it’s not a surprise that sometimes these issues manifest themselves via migraine headaches. Plus, unfortunately, migraines run in our family as I suffered from them when I was younger, and Kenzi has experienced them as well. Megan has some medication for her migraines, and at about 7:00 p.m. she said she couldn’t take it anymore and wanted her medicine. She took her medication and went right up to her room to try to go to sleep. At about 7:20 a.m., Deb and I heard the sound we have heard so many times before, which was Megan in her bathroom throwing up. For most people, this is a traumatic experience, but when you have been through it as many times as Megan, it’s just part of life. She usually gets her business done, wipes and rinses out her mouth, and then heads right back to bed, which is what she did. She said her head was still killing her but she was going to try and go to sleep. However, 15 minutes later, she was getting sick again, and this continued every 10-15 minutes for the next hour and half. We paged her oncologist who was obviously concerned that given Megan’s history, maybe it was something more than a migraine, so he asked us to take her to the CDH emergency room for admittance.

We left about 8:45 p.m. to make the 75 minute drive to her hospital, and on our way there, Megan was still throwing up about every 15 minutes. When we got there, the emergency room techs were waiting for her. Her oncologist had put the wheels in motion, so for an emergency room visit, things happened pretty quickly. They immediately started an IV to get her rehydrated and to get blood work. They also gave her some anti-nausea meds through the IV, because prior to that, Megan couldn’t keep any meds down. Finally, she got some relief for her headache as they also gave her pain medication through her IV, and once that cut through the headache, her nausea stopped. The biggest concern was getting a CT scan of her head to make sure nothing was going on that would have caused such a severe headache. The CT scan results came back at about 1 a.m. and when they compared the scan to her scans done three weeks ago, there was no discernible change that would show that her migraine was caused by her cancer or any other noticeable issue. That was a huge relief!!! Even though by that point she was feeling much better, after throwing up at least 12 times, her oncologist wanted her to stay in the hospital overnight for fluids and to make sure her headache didn’t return. We got to her hospital room at 2 a.m. and while waiting for her nurse, Megan actually was able to enjoy a popsicle and keep it down. After everything she had been through, she still managed to laugh about being 19 years old and absolutely loving that popsicle 🙂

The next morning, her oncologist came in at about 10 a.m. and cleared her to go home. He told her that the minute she feels a headache, she has to take her medications immediately to try and keep this from happening again. Megan felt much better after meeting with him and couldn’t wait to get back to the comforts of home. She was still so tired from her long ordeal, so it was an early night for Megan and her Boo Boo Kitty.

Megan gets to recover today, and then it’s right back at it on Monday morning as she has to be at the proton center for her 6:40 a.m. treatment. I’ve said it before, and it becomes more apparent with each passing day…cancer is omnipresent. It never rests, because even when it isn’t impacting your body physically, it makes its presence felt mentally. This disease is so evil, and along with Megan, I long for the day when no more kids have to deal with this vicious opponent. Megan is doing everything within her power to make that day a reality. Until that glorious day comes, the fight continues…

A Tribute To Campbell

Throughout the past six years and two months of “Megan’s Journey”, I have learned a great deal about the courage, determination, passion, and zest for life that kids with cancer possess. With everything cancer puts these kids through, it seems like it would be so easy for them to just curl up in the fetal position and give up. However, these kids just don’t respond that way. Somehow, they not only fight back, but they do it with love in their heart, determination in their soul, and a smile on their face. Often times, they decide that their own personal battle is not enough as they become avid advocates for childhood cancer and extend their fight to a cause greater than themselves. Through Megan, I have come to know many of these amazing childhood cancer warriors, and they never cease to amaze me. They inspire by challenging me to become a better person, and I am richer for having known them. Through the magic of social media, texting and Facetime, Megan has met fellow childhood cancer fighters from all over the world, and although all of them are special, there are times that there is a special connection that extends beyond the commonality of childhood cancer. One such friend was Campbell Sullivan.

Megan connected with Campbell within the past couple years, and immediately Megan was drawn to her as a kindred spirit. They were both the same age, born only 13 days apart. Although Campbell’s cancer was different than Megan’s, they both had stage 4 sarcoma. Just like Megan, Campbell had become a passionate advocate for childhood cancer having attended Curefest in Washington, D.C. and even starting her own nonprofit organization called the Ski Fast Foundation. This foundation’s mission is to financially support sarcoma warriors as they strive to return to their pre-diagnosis extracurricular passions in either sports, the arts, music, science, etc, both during and post-treatment.  Campbell’s positivity and zest for life in the face of such adversity aligned exactly with Megan’s outlook on her own cancer battle. Campbell lived near Vail, Colorado, so although the girls were never able to meet personally, they stayed connected via text and Facetime as she was someone Megan would reach out to whenever she needed a positive lift. Needless to say, on the morning of February 22, Megan was devastated.

On that Monday morning, Megan was already so anxious as she was awaiting the results of her full body PET scan that she received the previous Friday. Her doctors already knew that there was a new tumor at the base of her skull, but before they put a treatment plan into action, they had to make sure there was nothing else they were dealing with. Just sitting there with her phone on her lap was so stressful, but then a notification came across her phone that she couldn’t believe. Megan called me to ask if I could come home for lunch, because she had just learned that her friend Campbell had passed away unexpectedly. When I got home, Megan was devastated. Through tears she told me that Campbell had died of a brain hemorrhage that no one saw coming. Just like that, another incredible young person was taken far too quickly by the effects of childhood cancer and its archaic treatments. It just seemed so unfair.

That night, Megan shared that it would take her some time to get over losing Campbell, and she was correct as the next few days were rough. As time started to slowly heal Megan’s wounds, she began discussing how she could honor Campbell. She first put out a beautiful Facebook post in honor of Campbell. She then put out another post asking if people could honor her by donating to the Ski Fast Foundation. Then Megan heard that Campbell’s family was holding a celebration of life memorial service for her on March 6, and it quickly became apparent that there was no way we were keeping Megan away from attending to honor Campbell.

Megan started her proton radiation treatments last Thursday with her first appointment at 6:40 a.m. We left the house at 5:30 a.m. to make the drive to the proton center in Warrenville. This treatment protocol calls for her to receive 25 days of treatments to three different treatment fields at the base of her skull. Once again, Megan has to wear that terrible facemask that they use to bolt her head to the table so she remains motionless during the precise treatment. Being claustrophobic, Megan hates the facemasks, but after wearing them three previous times, she has managed to cope. She was a little nervous going into her treatment, but she powered through it. When she came out, I couldn’t believe the imprints on her face and nose from the tightness of this mask. She said it was rough, but she managed to deal with it.

After her first radiation treatment, we had about an hour and half break before she had to be at CDH for her chemotherapy treatment. As always, the medical professionals at the CDH clinic were amazing as they always make Megan smile. Her blood counts were good, so her chemotherapy treatment was a go. While she waited for her chemo infusion to come up from the pharmacy, Megan’s oncologist came in for her weekly physical exam. Megan had a few concerns she wanted to talk about, and then she told her doctor that she wanted to travel to Colorado to attend Campbell’s celebration of life ceremony. Her doctor gave her the green light as long as she promised to wear both a mask and a face shield on the plane, and to do her best to stay distant from people. Of course, Megan agreed and even though her chemotherapy treatment would make her extremely tired and somewhat nauseous on Friday, she was not about to let cancer keep her from honoring her friend.

On Friday morning, we once again left the house at 5:30 a.m. to make it to her 6:40 a.m. radiation treatment. After that, we grabbed a bite to eat and headed to the airport. Megan was tired, but did well during the flight. When we landed, Megan discovered that there was an In-n-Out Burger located only 20 minutes away, so of course we had to go and wait in the 30 minute drive through line 😉 We then got to our hotel outside of Denver and then just drove around for awhile taking in the sites of the majestic mountains.

On Friday night Megan and I both got hit with a bit of altitude sickness, so we just hung around the hotel on Saturday morning until we needed to leave for Campbell’s ceremony. The remembrance was beautiful as the event was held at a ranch with the stunning snow-capped mountains in the background. Given that Campbell was an avid skier, the setting could not have been more appropriate. It was an emotional ceremony for Megan as she shed lots of tears as person after person came up to share what an amazing person Campbell was. It was humbling to learn even more about the positive impact that Campbell had on so many people. Afterwards, Megan was able to talk with Campbell’s parents and share her love through more tears. It was hard to see Megan so upset, but I know she needed this closure.

The day Megan learned of Campbell’s passing, we were driving home from Morris and Megan starting taking pictures of the incredible sunset. She said that she just knew that Campbell had sent that sunset to her to let her know that she was okay and not to worry.

Yesterday, when we were driving home from Campbell’s service, Megan again saw this sunset over the mountains. Once again, Megan knew this was Campbell letting her know that everything was going to be okay. Megan now has another angel looking after her; fighting for her; and providing comfort.

Although we didn’t have much free time in the Denver area, we did manage to stop a few places on our drives. Megan saw a sign for a spot to see big horn sheep, so of course, whenever an animal is involved she has to stop. Unfortunately, we didn’t see any sheep but the views were perfect.

We also stopped in Vail for a couple hours on our way home from Campbell’s ceremony. Megan really enjoyed the views from downtown Vail watching the skiers come down the hills.

Kenzi was home from school Monday night through Thursday morning, which was exciting for Megan. The girls did their usual Starbucks runs, watched movies, caught up on TikToks, and just spent time catching up with one another. It was so nice to have our entire family together for a couple days. It was also perfect timing as Megan was anxiously awaiting the start of her proton treatments on Thursday, so having her sister home was the perfect antidote for her anxiety. We had some excitement while Kenzi was home as she heard that she was admitted to two more graduate schools…one of them being the University of Wisconsin-Madison, which is the third highest ranked Speech-Language Pathology graduate program in the country! Kenzi was so excited, and we were so proud of her. So far she has been accepted to four schools and is awaiting responses from three more before making her final decision. Kenzi has worked so hard to get to this point in her educational career and to see all of her hard work paying off is so gratifying. While at school, Kenzi has been working in a coffee shop called Crescendo. The owners wanted to take some pictures of each employee to use on their Instagram page. I thought Kenzi’s pictures captured her spirit perfectly.

We are also very excited to announce that the “2nd Annual Team Megan Bugg Golf Outing” will be held on June 12 at the Nettle Creek Country Club. Many thanks to the Jezik family for once again organizing this event where all proceeds go towards Megan’s fundraising efforts for childhood cancer through the Children Cancer Therapy Development Institute. In the first 24 hours since the event was finalized, 23 of the 40 foursomes are already reserved, so if you are interested, be sure to contact Tim Jezik at the phone number listed on this flyer.

Megan and I just got home from our quick 48 hours in Colorado, and of course, her pets are very happy to see her.

It’s been an emotional weekend, but I am comforted knowing Megan is at peace as she was able to pay her proper respects to her friend. As childhood cancer has done with far too many young people, Campbell was taken from us far too soon, but her spirit will carry on in all of the lives she touched. May she rest in peace.

Losing Another Friend

Cancer is tragic for any child, but I have always maintained that there is nothing more difficult than being diagnosed with cancer as a young teenage girl. Teenagers are old enough to understand the gravity of their diagnosis, and that is traumatic in itself. However, young teenage girls are already at such a fragile time in their lives. Raising two girls myself and being a former middle school principal, I have some understanding of the social-emotional challenges that accompany being a 13-year-old girl. Even without a cancer diagnosis, middle school girls are becoming self conscious of their physical appearance. They are trying to fit into various social groups, and dealing with many relationships for the first time. There is just so much going on for them already…and then a cancer diagnosis gets added to the mix. At first, the support of friends is tremendous, but understandably over time, that support wanes and you begin to feel isolated. You can’t go to school and your friendship groups start to move on without you. You can’t go to school and you slowly lose touch with your classes and your extra-curricular activities. Your hair starts to fall out and you become even more self conscious of how you look. You try to find ways to cover your radiation burns so they are not so noticeable. Obviously, your social life becomes non-existent as you are either constantly sick from the chemotherapy or your blood counts are so low that you cannot risk being out with friends for fear of infection. On top of all that, you are so afraid of your own mortality that the resulting anxiety makes getting out of bed every day a chore. As a 13-year-old girl, you crave someone to talk to who truly understands what you are feeling, and the reality is, the only people who can really understand are those who are going through it. That’s why the teenage childhood cancer community is so strong…especially amongst females. The support they provide each other is immeasurable, but the tragedy is, that far too often these friends become another cruel casualty of childhood cancer. Megan has experienced this painful loss so many times, and every time it devastates her. This week’s loss of her dear friend Campbell was especially difficult.

When Megan was first diagnosed, she quickly connected with a brave and inspirational friend in San Diego named Kasey who had Alveolar Rhabdomyosarcoma just like Megan. Although Kasey was not at stage 4 like Megan, she still served as a tremendous support as she was about two months ahead of Megan in her treatments. The two girls were going through virtually the same treatments, so Megan could reach out to Kasey when things were going tough and Kasey would understand and help talk Megan through the tough times. Kasey is a tremendous success story as she is in remission and is currently attending college studying medicine. Kasey was Megan’s first childhood cancer support friend, and they remain close to this day.

Megan also befriended an amazing young lady named Mia who also had ARMS. Mia’s cancer was stage 4 just like Megan, so once again, they were going through nearly identical treatments. Megan and Mia were soulmates as they spoke frequently and Megan still maintains that Mia understood her better than anyone. Unfortunately, Mia had a severe relapse and was declared terminal. Megan was absolutely devastated and I will never forget the evening I got home from work to hear the news about Mia. Megan was desperate to see Mia in person as they had only spoken via text and social media, and she asked if I would drive her to Topeka, Kansas to see her before she passed. That visit was one of the most powerful, emotional, and impactful experiences of my life. When we got to her house, Mia looked incredibly beautiful. She and Megan had a wonderful visit full of smiles, laughs, and hugs. At that time, little did we know how really sick Mia was as she passed away only two days after Megan’s visit. Megan was crushed, but she gains strength from knowing that Mia is looking out for her. Mia was one of a kind and her memory will never fade for Megan.

Megan also befriended a strong young lady from Australia named Sophia. Sophia had osteosarcoma, and over time, her outlook for recovery became grim. Megan and Sophia would talk via text and FaceTime, and Megan could see Sophia getting weaker and weaker as the days went on. Sophia’s parents took her on a trip to the United States as one of her last wishes. Megan and Deb made plans with Sophia and her parents to meet in Los Angeles so the girls could spend some time together in person. Once again, this was a very powerful visit for Megan as Sophia tragically passed soon after. Once again, Megan was devastated as cancer took yet another friend from her support group.

This week was especially hard for Megan as she lost yet another close friend. Megan and Campbell connected via social media, and immediately Megan connected with her. Campbell had a rare form of sarcoma, and just like Megan, once she relapsed, she became an avid advocate for childhood cancer. Campbell attended Curefest and actually helped to emcee last year’s virtual Curefest event. She and Megan would talk frequently through the magic of social media, so even though she lived in Colorado, they were never far apart. This past Monday was already so hard for Megan because she was anxiously awaiting the results of her full body PET scan from the previous Friday. The bad thing about getting a PET scan on a Friday is very often, the results are not read until the following Monday. As a result, last weekend was really hard for Megan as the anxiety was starting to get the best of her. On Monday morning, she was on edge with her phone in her lap waiting for a phone call for the results of her PET scan. She already knew that the brain MRI had shown two small tumors at the base of her skull, but she was panicked that maybe there was something else that the CT and MRI had missed. “Scanxiety” is very real, and it was hitting Megan full force on Monday morning.

When I stopped home for lunch on Monday, all of the sudden Megan’s face went ashen and I asked her what was wrong. She said that she had just read that Campbell died that morning. Immediately the tears started to flow as Megan was crushed. She couldn’t believe it as she and Campbell had just texted each other on Saturday. Apparently, Campbell had died suddenly from complications brought on by her cancer. Not only was Megan dealing with waiting for her own scan results, but now she had the tragic news that she had lost yet another friend. Needless to say, Monday was a very rough day. Our thoughts and prayers go out to Campbell’s family as she was such a special person. If you read this article about Campbell and her lasting impact on those around her, you will soon discover why she and Megan were so close. May she rest in peace.

Although Monday was a very rough day, Megan did get some positive news regarding her PET scan. The scan showed only the two small tumors on each side of her occipital lobe, which was the best news we could have hoped for. Last Thursday, Megan continued with her experimental chemotherapy treatment, and this week she will begin what we expect to be 25 proton radiation treatments to the two lesions in her head. This will be Megan’s seventh round of proton radiation, and at its conclusion, she will have endured 205 total radiation treatments over the past six years. Her medical team remains optimistic because not only are these two spots treatable, but over the past two years, this persistent tumor at the base of her skull is the only new cancerous growth she has experienced over the past two years. If proton radiation can finally exterminate these two spots, we are hopeful Megan will be officially in remission. Although Megan is not looking forward to making 25 more trips to Warrenville and having her head bolted to a table for treatment, she knows it is a necessary evil to finally getting rid of this evil disease one and for all.

We are very excited because Kenzi’s schedule allows her to come home for a couple days starting on Monday afternoon. Megan always loves it when her sister is home and although Kenzi has some online classes to attend, I know they will find plenty of time to catch up on their favorite television shows, grab some Starbucks, and catch up on the time they have missed. We are so proud of Kenzi as she is finishing up her final semester as an undergraduate student at the University of Wisconsin-Madison. She is studying to become a speech-pathologist, so right now, she is anxiously awaiting responses from the graduate schools she applied to. These last six years have not been easy for Kenzi. Many people forget the toll that childhood cancer takes on siblings, but any family who has been through this journey can verify that it is so hard on brothers and sisters. Somehow, Kenzi has managed to balance her school work with being a supportive sister to Megan, and we could not be more proud of her. Kenzi applied to seven different graduate schools, and she was excited to already be accepted to the first two she heard from–University of Illinois and Rush University in Chicago. She is still waiting to hear back from other schools before she makes her final decision. This weekend, she went to visit Makenna Emerson in Chicago so she could visit Rush University and get a bit of a feel for what it would be like to live in Chicago. Here are a few pictures from Kenzi’s Chicago adventure.

This is another big week for Megan as she starts yet another proton radiation regiment to treat the two small tumors in her head. The past few days have been another difficult and emotional roller coaster ride, but Megan’s head is still in the right place. She is still as determined as ever to win her battle, and now Megan knows that she has another precious soul in Campbell looking after her and lifting her to victory. These kids are so brave, and I admire them more than I could every put into words.

“And one has to understand that braveness is not the absence of fear, but rather the strength to keep on going despite the fear.”

Paulo Coelho

What You Think, You Become

It’s been a trying week for Megan. A little less than two weeks ago, Megan had her three month CT and MRI scans to determine the success of the current treatment on the existing tumor located at the base of her skull. After first hearing that the treatment had worked and her existing tumor had shrunk by about 70%, she was on top of the world with excitement. Unfortunately, her euphoria was short-lived as less than two days later, while meeting virtually with her radiology oncologist, he discovered another tumor that had developed not too far from her tumor they were treating. Obviously, Megan was completely devastated. Other than this stubborn cancerous activity near her clivus bone, Megan has had no new cancerous activity in two years. Successfully treating this tumor would have put her in remission for the first time in so long, and I know she was so looking forward to that. Megan’s entire life has been put on hold for over 6 years as she has valiantly fought this beast, and there are so many things she would like to do and dreams she wants to pursue. Hearing the news that she now had to go through more treatment, more worry and more uncertainty was a huge burden to place right back on her shoulders. However, as always, Megan is ready to rise to the occasion and continue this fight that she has so bravely waged not just for herself, but for every single kid who has fought, is fighting, or will have to fight this vicious and unfair disease.

Throughout “Megan’s Journey”, she has taught me so many important lessons, and one of the most important has been the power of the mind and its ability to control the body. For many years, I have had a habit of writing down quotes and saving them for use as personal motivation or as an organizational leader to reinforce certain initiatives and goals. Megan recently decided I needed a Pinterest account, so she set it up on my phone, and with it I’m afraid she created a monster as I can’t seem to stop capturing certain quotes. One I came across this week that showed up without a source was,

“What you think, you become. What you feel, you attract. What you imagine, you create.”

As soon as I saw this quote, it immediately struck me that it was such an accurate description of “Megan’s Journey” from Day #1 when she scolded her mother and I as a 13 year-old by telling us to stop saying “I’m sorry.” She told us that when we say “I’m sorry” it makes her believe she isn’t going to get better, and in her words, “I am going to get better.” That has been Megan’s mantra since she first embarked on this journey against childhood cancer. In her mind, she is going to win. Granted, it’s taking her a little longer than she had hoped, but her belief in herself has never wavered. Sure, there have been tough times, and hearing the news that another tumor was discovered at the base of her skull was hard. The amazing thing about Megan is that even though that news was devastating, within minutes of hearing it, she started working her network of oncology professionals from all over the country to discuss treatment options. She spends precious little time sitting around feeling sorry for herself and asking “Why me?”. Instead, Megan ignores the statistics and the negativity that surrounds childhood cancer and instead focuses on her recovery and asks “Why not me?”. Remember…”What you think, you become.”

This past week was a flurry of medical activity for Megan with lots of follow-up appointments as her medical team set about the task of determining her treatment plan. On Thursday morning, she met with her vision specialist at the Wheaton Eye Clinic for a follow-up on the vision issues she has been experiencing in her right eye. The tumor that was treated had pressed against the nerve that controls the lateral movement of her right eye, which resulted in her having severe double vision issues. The problem first started in early November, so Megan has been dealing with this for three and a half months. Since the onset of the issue, she has not been able to drive, and even everyday activities like watching television are a challenge. It was nice that she got some encouraging news at this appointment as the doctor said that her eye was starting to recover. Of course, Megan doesn’t notice it as much because she lives it everyday, but her eye had recovered to the point that he was able to provide her some vision relief with a prism that adheres to her glasses. Now, when Megan watches television, she no longer has to turn her head to the right in order to account for the double vision. Her doctor seemed encouraged that her eye was improving and said that if it continues to improve, she may be able to avoid surgery. That was definitely some much needed good news.

After her eye appointment, she then had to go to the Northwestern Proton Center for a CT to get fitted for yet another radiation mask. Megan hates these masks as they are what she wears during treatment to keep her head from moving. During her proton radiation treatments, they actually bolt her head to the table for the procedure, which is really difficult considering Megan’s claustrophobia. Since she has been through it so many times in the past, she now manages to get through it, but it’s still no fun for her. Now that her radiologist has the CT and the mask is made, he just has to complete the building of the proton radiation plan. We are really hopeful Megan is able to start treatment the week of March 1. At this point, we do not yet know how many treatments she will have to receive, but if it is like her last go around, we think it will be 20-25 treatments. If that is the case, this seventh round of proton radiation will put Megan right at 200 total radiation treatments during her six and half year battle. After a long day on Thursday, Megan was ready to get some rest with her trusty sidekick–BooBoo Kitty.

On Friday, Megan was right back at it as she was scheduled for a consult with her oncologist to discuss her treatment plan moving forward. Megan received more tough news when her doctor explained to her that the more they reviewed the brain MRI, they thought they now saw a second spot on the other side of her treated tumor. If accurate, this means that the existing tumor had leaked outside the treatment margins on both sides of her occipital lobe. Although he said the locations were still treatable with proton radiation, it just complicated the issue a bit. He also told her that since these new tumor locations showed up while she was on her current experimental chemo, they were going to stop that treatment because it didn’t seem to be effective. Instead, they are going to count on the proton radiation treating the existing spots and add an oral chemotherapy called Pazopanib as a kind of insurance policy. Pazopanib is FDA approved and one of its most serious side effects is liver damage, so her medical team will be monitoring her liver functioning very closely throughout her treatment. Of course, Megan immediately starting contacting her network of oncologists and friends to see who has taken the drug; how effective it was; what the side effects were; ect. Importantly for Megan, her current lesions are not located in any vital organs so the plan is still for the proton radiation to be the primary treatment. Radiation has always worked for Megan in the past, so there is no reason to believe it won’t work again.

After her emotional meeting with her oncologist, Megan wasn’t done yet, because she had to immediately head to her full body PET scan. Her medical team ordered the PET scan to verify that the spots they saw on the MRI were actually active tumors. Megan is not a big fan of the PET scans because she has to be in a tight tube for a period of time, but once again, she has done this so many times that she has learned how to cope. The bad thing about getting a PET scan on a Friday afternoon is that you do not receive results until the following Monday. So many medical professionals have reviewed her CT and MRI results and the only things they have seen are the two locations at the base of her skull, so we have every reason to believe that the rest of her PET scan will come back clear. However, Megan is understandably concerned, so this has been a difficult weekend for her as she tries to keep the anxiety away. Once again, I don’t know how she does it, but somehow in the face of it all, she manages to remain positive. Hopefully, her PET scan results come back on Monday morning to verify what we already know and she can get refocused on her treatment plan.

During these tough weeks, it seems like her “Team Megan” supporters know just what she needs. Megan was excited this week when she received a care package from her friends at Ivory Ella which included a fuzzy blanket that she loves.

Megan has also been partnering with a young lady named Madeline who has connections with the American Girl Doll organization. She and Megan have been working together on a potential childhood cancer fundraiser via American Girl Doll. Megan was touched when she received an American Girl Doll in the mail that was personalized to look like her. Receiving that gift really made her day.

Right now, Megan has no medical appointments this week, so hopefully she can use this time to catch her breath and get ready for her next round of treatment. Megan’s Journey has been longer than expected, but the expected outcome remains the same–VICTORY. If you plan on beating cancer, your mind can’t accept anything less.

Roller Coasters Are Evil

Over the past six years and two months, I have often equated “Megan’s Journey” with childhood cancer to riding the biggest, baddest roller coaster you have ever experienced. Throughout her ordeal with this dreaded disease, we have experienced so many moments of abject devastation and just as many moments of the ultimate jubilation. The depth of emotions felt with the horror of learning that your child has cancer can only be matched by the utter joy of hearing that your child is in remission. When we were in the infancy of “Megan’s Journey”, we were far too naive as we let ourselves get lost in the roller coaster ride. When we heard negative news, we allowed ourselves to wallow in the anger and self-pity that can naturally accompany the body blows childhood cancer inflicts. Similarly, when we received positive news, we allowed ourselves to believe that the battle had been won and it was time to move on with life. Unfortunately, over the past six years, Megan and our family have become more adept at the harsh reality posed by childhood cancer. In this roller coaster ride, you have to learn to catch your breath during the calm so you can endure the storm. Sometimes the calm can be up to a year, like it was during Megan’s first remission in 2016. Sometimes the calm can only be three months, like it has been between Megan’s latest relapse. Other times, the ups and downs of this roller coaster ride manifest themselves in the cruelest of ways…by exposing you to the ultimate high and low in matter of only three days, which is exactly what happened to Megan this past week.

Megan has been in treatment since November, 2020 for a tumor located in her clivus bone at the base of her skull. The tumor was originally treated with gamma knife radiation during the summer, 2020, but a November scan showed that it had grown in an adjacent location. This new tumor had metastasized in a location that needed to be treated immediately, because it had already started to impact the eyesight in her right eye. She started a series of 25 proton radiation treatments coupled with a experimental chemotherapy drug. On February 8 and 9, Megan was scheduled to undergo her three month scans to make sure there was no further tumor activity and most importantly, to see if the treatments had been effective on the existing tumor in her skull.

The days leading up to her scans are always so difficult. I have never seen anyone handle their cancer journey with more positivity, determination and grace than Megan, but even she struggles with scan week. “Scanxiety” is a very real thing for childhood cancer survivors, and there is no way I could adequately explain what Megan goes through. I won’t even pretend to try, because without going through it myself, my attempts at explaining her feelings would ring hollow…and border on disrespectful to all childhood cancer survivors. Their experience with scans is so unique and only they really understand what they are going through. Suffice it to say, the two days leading up to scans are very difficult for Megan, yet somehow, she manages to fight her way through it.

On Monday morning, we headed to CDH for her chest and pelvic CT. Of course we are always worried about any scan, but we all felt really positive about the CT scan because Megan wasn’t showing any outward symptoms of any further cancerous activity. That afternoon, her oncologist confirmed our thoughts as he called Megan to let her know that the CT looked clear. Obviously, Megan was relieved, but this was only the small hurdle. The much bigger hurdle would be on Tuesday when she received her brain MRI under anesthesia.

On Tuesday morning, we made the drive back to CDH for Megan to receive her brain MRI. Due to her ongoing issues with claustrophobia, Megan still gets her brain MRI under anesthesia. It makes for a very long day, but it is really the only way she can tolerate the long scan. As usual, Megan did fantastic as shown in her before and after pictures.

Thankfully, her oncologist called late that afternoon to let her know that the MRI showed that her treatment was working. The existing tumor had shrunk considerably, which was the amazing news we were all hoping for. Once Megan received that news, she was a completely new person. Her eyes were aglow with excitement and optimism, because although she knew she would have to continue with her chemo treatments for at least another three months, she also now had proof that the treatment was working. Considering that the existing tumor in Megan’s skull is the only tumor she has had in two years, that elusive light at the end of the tunnel was getting brighter. Our entire family was alive with excitement!!! Maybe we were all about to get off this savage six year roller coaster ride.

On Thursday, Megan had an appointment with the radiologist who handled her proton radiation treatments. We met with him virtually in order to save another drive up north. In the beginning of our meeting, the doctor was very positive as he shared the MRI images on our computer screen and showed the before and after of the tumor in her clivus bone. He seemed very positive and we were so excited to actually see the visual proof that Megan’s tumor had dramatically shrunk. As we basked in the news, the doctor asked us to hold on for a minute because he wanted to check something. You would immediately feel the air exit the room as our virtual meeting went silent and the doctor clicked through image after image on our computer screen. Our hearts sank as we could predict what was coming. After a few minutes of silence, the doctor honed in on an image at the base of Megan’s skull. He apologized to Megan and said that he saw another small mass that he believed was a part of the original tumor that had made it’s way outside of the radiation treatment area. In a matter of three minutes, we were not only right back on that awful roller coaster, but were now hanging on for dear life. Although I was devastated, my thoughts immediately went to Megan and how this news had to hit her like a freight train.

Understandably, Megan was so upset and disappointed, and although this was definitely difficult news to hear, there is a bright side. They caught this tumor very early as it is only about a centimeter in diameter. It is also located in an area that is treatable with more proton radiation. It also seems to be an extension of her previous tumor, which means that it is not a completely new lesion. Like her oncologist said when he called Megan, since this seems to be a part of the tumor that was being treated, she has still had no other cancerous activity in two years!!! That leads us to believe that once her medical team is able to knock out this current tumor once and for all, Megan will officially be in remission. In this battle, you have to seek out the positive and always keep hope alive, because once you lose hope, cancer has won.

The next step for Megan is a PET scan this week to verify that the discovered new mass is actually cancerous. If it is an active tumor as expected, then her medical team will determine her next radiation protocol. In the meantime, she will continue with her fifth round of chemotherapy, which starts this Thursday. Proton radiation has always been effective for Megan, and we have no reason to believe that it won’t work again. Like I said, you have to keep your face to the sunshine to keep the shadows from creeping in.

This week’s roller coaster ride was so tough to experience. Seeing Megan go from euphoria to disappointment in a matter of three days was so cruel. There is no denying it’s been a very tough week for her, and she has had her moments where the gravity of her situation has gotten the best of her…but as usual, she doesn’t allow those moments to linger. Somehow, she always finds a way to regain her composure; put that infectious smile back on her face; and get mentally prepared to go to battle yet again. Throughout this roller coaster ride, we have all experienced the full gamut of emotions where the highs are so unbelievably joyous and the lows are just so incredibly cruel. This latest setback was exceptionally gut wrenching, but as she has done so many times before, Megan will bounce back and be ready for the next chapter in her battle. Someday, we will all finally get off this evil roller coaster, and when we do, it will be with Megan’s hands raised in the ultimate victory. Until next week…

It’s Scan Week…Again

If you spoke with any teenage childhood cancer survivor, you would find wide consensus that one of the most difficult aspects of this journey is scan week. When children are diagnosed with cancer, they begin a treatment protocol that most likely begins with some combination of archaic chemotherapy drugs and maybe a series of radiation treatments. When Megan was first diagnosed on January 30, 2014, she started six weeks of radiation on two different sites and 54 weeks of the most brutal chemotherapy she has ever experienced. As you watch your child go through this torture, one of the most challenging aspects is that you only have the visible evidence to determine whether or not the treatment is actually working. When Megan was going through her first treatment, we had some visual evidence that her treatments were effectively attacking the cancer as we saw the major tumor on her arm shrink, and many of the other visible tumors all over her chest and head started to disappear. I remember her first scans were after only seven weeks of treatment, but we were so confident that her treatment was working, and our optimism was rewarded with her promising scan results. However, since that time, Megan’s tumors have not been visible to the naked eye. Her first tumor was a relapse in her breast; followed by a tumor wrapped around her aorta; and now a tumor located in her clivus bone at the base of her skull. For her first two relapses, we had no idea whether or not her treatments were working until her scan results, and the same is true for her current tumor. That’s what makes scan week so difficult…Megan has been in treatment since November as she finished her proton radiation and is still going through her experimental chemotherapy treatment. Although we believe there are signs that her treatment is working, you never really know for sure until the oncologist calls with the scan results. The days leading up to the scans and the subsequent wait for the doctor to call are agonizing. I really don’t know how Megan keeps it together during this time. It wouldn’t be honest to say scan week doesn’t impact her, because her “scanxiety” is real, expected and understandable. However, somehow she still manages to get through each day with a smile on her face, determination in her eyes, and love in her heart. During the challenges that accompany scan week, I think Megan is once again is taking better care of us than we are of her.

This past Tuesday, Megan started her 125th week of chemotherapy as she received the second treatment of her fourth round of this current protocol. Because there is such a limited number of clinically proven treatment options available for childhood cancer, Megan’s second relapse actually exhausted all of the clinically proven chemotherapy drugs for her. During her third relapse, she was given an experimental combination of chemotherapies that proved effective, but caused significant lung damage that required her to stop after 24 weeks instead of the full 30 weeks that her medical team had hoped for. Currently, Megan is taking another experimental chemotherapy drug that so far, she has been handling pretty well. Although she has gotten nauseous a few times, it hasn’t been the debilitating nausea that she has experienced with some past chemotherapy drugs. She is still experiencing body aches that include bone pain, which is to be expected. Her most annoying side effect has been the continual digestive issues that make her uncomfortable most every day. Other than that, her side effects have been relatively manageable…but then again, Megan’s pain threshold is through the roof, so it’s hard to gauge just how much discomfort she is really experiencing. As I’ve said before, Megan feels like she has the flu almost every day, so what might relegate many of us to bedrest for the day is nothing to her. Through this experience, Megan’s perspective on so many things is so much different from her peers, which is to be expected when you have been fighting for your life for over six years.

As usual, when Megan got to the CDH clinic she was greeted by the incredible team of nurses who always make her feel right at home. Her oncologist completed a physical exam and said that he didn’t feel any abnormalities. Megan also asked a series of questions about her treatment; how she is feeling; and what’s coming next. It’s been interesting to watch Megan transform from a painfully shy 13-year-old with cancer to a confident 19-year-old who has become her own best medical advocate. Following her bloodwork and physical exam, Megan waited for the pharmacy to make her chemotherapy infusion, which always takes about an hour. While she waits, she catches up with the nurses and the child life specialist who work in the clinic. Prior to her chemo infusion, she receives two different medications for nausea, one of which makes her really tired, so following her treatment, she can’t wait to get home and settle in on the couch for her first recovery nap. Of course, her pets are always right by her side as they look after her.

Yesterday, we drove Megan to Bloomington to meet up with her best friend from high school who, due to COVID concerns, she hasn’t seen since April. Megan was so excited to see Katelyn as they exchanged long overdue Christmas gifts; grabbed some lunch; made a quick trip to Target; and ended at Krispy Creme Donuts. The girls had a great time as it really helped Megan to spend time with her friend instead of sitting around the house worrying about her upcoming scans.

On Friday, Megan felt well enough to make some of her famous Oreo cupcakes to take to Katelyn. While we were in Bloomington, she also dropped some off at Cousin Emily’s house, who had asked Megan to make her some whenever she was coming to town again. Although we couldn’t stay and visit due to COVID, it was good to see Emily and her family for even a short time. Megan also wanted to drop some cupcakes off for Kenzi’s boyfriend, Nick, who goes to school at Illinois State University. Fortunately, there were still four cupcakes left for Deb and I 🙂

On Monday, Megan has to be at the CDH clinic at 8:30 a.m. to get her port accessed prior to walking over to the other side of the hospital where she will get her chest and pelvic CT. On Tuesday, she has an brain MRI under anesthesia starting at 11:30 a.m. I know Megan would appreciate everyone on Team Megan sending her positive thoughts on Monday and Tuesday. Your support has been so important to her recovery effort, and we could never properly thank you all for everything you have done for her.

Following her scans, we wait. Although that wait is awful, we are still thinking positive. Megan’s eyesight is yet to improve, but it has not gotten any worse, so we are taking that as a sign that the tumor in her clivus is not growing. Prior to starting her radiation and chemotherapy treatments, Megan was getting severe headaches nearly every day, but now her headaches are few and far between…and they are not nearly as intense, so we are taking that as a positive sign. She is also showing no other signs of cancer such as a consistent low-grade fever or other unexplained aches and pains, so we are also taking that as a positive sign. Most importantly, we know that Megan still believes in herself and her power to defeat this evil beast. Her will to win remains the most positive sign of all.

“You just can’t beat the person who never gives up.”

Babe Ruth