Choosing Hope in Pittsburgh

When Megan found she had once again relapsed with the tumor at the base of her skull, she had two choices. She could sit and feel sorry for herself asking why me for the 6th time…or she could choose hope. Of course, Megan chose hope.

I will never forget when we met with the radiation oncologist in June who told Megan that her MRI showed growth in the tumor in an area that had previously been radiated. He told her in no uncertain terms that there was nothing more he could do. Megan already knew that her clinically proven chemotherapy options were exhausted, so hearing that radiation was also out was a really tough pill to swallow. However, before we were even out of the parking lot, Megan was already reaching out to her childhood cancer community and to medical professionals from all over the country looking for answers. She knew that since her tumor was localized, the last best option was to resect the tumor. In short order, she connected with a surgeon in Pittsburgh who is renowned throughout the country for his work with endonasal cranial tumor resection surgery. We got Megan’s records sent to him and to make a month long whirlwind short, he told Megan that he thought he could successfully remove the tumor…but with some potentially lasting side effects.

He said that Megan’s tumor was wrapped around her 6th cranial nerve, which would most likely have to be sacrificed during the surgery. This means that Megan may lose function of the lateral movement in her right eye, which she has been dealing with for the past 8 months. The tumor is also very close to her right carotid artery, so there is a chance that they might need to perform a bypass surgery in order to resect the tumor. Although there were some risks, when asked by the surgeon if she had any questions, Megan’s response was, “How soon can we do this?”. The surgeon responded with an accelerated schedule that had us coming to Pittsburgh on Thursday, July 29 so we could get to a Friday morning MRI and CTA scan. These scans were the key to the entire surgery as he had to make sure the tumor was still operable.

Of course Megan wasn’t happy about leaving home and her pets for such a long time, but she managed to do a little bonding before she left. She also had fun carrying her Boo Boo Kitty around in the new sweatshirt that Miss Kim got her. Believe it or not, Boo Boo loved it!!!

Friday was a very long day as not only were there some unfortunate delays in the schedule, but Megan was also attempting a head MRI without anesthesia for the first time since she was first diagnosed as a 13-year-old in December, 2014. Megan was looking for some good luck, so she decided to scratch off a lottery ticket that she received as a gift before she left home. She actually won $5 so she thought that was a good sign of things to come 😉

Although she was really nervous, she found a way to power through it, but at that point the stress was just getting started. Now Megan had to wait for the surgeon to look at the scans to make sure the tumor had not accelerated and was still operable. Since the surgeon was in the OR all day, we didn’t hear from him until 7:00 p.m. Megan was so relieved to hear that her tumor had not grown and the surgeon felt like the resection was still a go. After hearing that news, Megan was all of the sudden starving and we were finally ready to celebrate Deb’s birthday. Megan and Deb found a cute Italian restaurant where we were able to sit outside on a beautiful night. We had so much fun as we celebrated Deb’s birthday and basked in the wonderful news we had received.

On Monday morning, Megan has to be at UPMC at 6:00 a.m. to go inpatient for a Balloon Test Occulsion that will test the strength of her right carotid artery. Following that test, she will have to remain inpatient until her actual tumor resection surgery and the period of recovery, which should be about a week in total. Depending on the results of Monday’s BTO test, her surgery will either be on Wednesday or Thursday of this coming week. Although Megan is still a little worn down from her rough week of chemotherapy the week prior, we tried to do our best to keep her busy so she didn’t have to sit around and think about her upcoming week. In addition to the many restaurants Megan found that she wanted to try, we also fit in a Pittsburgh Pirate baseball game on Saturday night. One of Megan’s brave childhood cancer fighting friends is Katie who leaves in Nevada and is currently in treatment. She and Megan talk pretty much every day. Katie’s Uncle Mike generously gave us the tickets for Saturday’s game, which was an absolutely beautiful night for baseball. We were so thankful to them, and to make it even better, it was Hawaiian shirt giveaway night!!!

Although it was a late night getting home from Saturday’s baseball game, Megan was excited to get going on Sunday morning and head to the zoo. After breakfast, we headed to the Pittsburgh Zoo and Aquarium. Since it was so hot and humid, I pushed Megan through the zoo in a wheelchair, but the heat still got to her a bit, so we had to hustle through the exhibits. Ever since her intense first 54 weeks of chemotherapy, Megan has been very sensitive to the heat and humidity which makes outdoor summer activities hard for her. Although we had to abbreviate our visit, we still had fun before getting her back to our hotel room for some rest.

While at the zoo, Deb took this picture, which I thought was really special. Megan is again partnering with Ivory Ella on a line of shirts for Childhood Cancer Awareness Month in September. Ivory Ella is once again donating a portion of all profits from this line of shirts to Megan’s fundraising efforts for childhood cancer research through the Children’s Cancer Therapy Development Institute. Word has it that this new line of shirts will drop on the Ivory Ella website on August 20, but we will definitely keep everyone on Team Megan informed as more specifics become available. Megan got an early shipment of the white t-shirt that she is wearing in the picture. It was cute to see the Ivory Ella elephant on the back of her shirt while she was looking at the elephants at the zoo. Thanks again to Ivory Ella for always supporting Megan and all kids fighting childhood cancer.

When Megan travels, one of her favorite things to do is find famous local eateries with a history or unique niche. One really fun place we went for breakfast on Saturday morning was Pamela’s Diner on the Strip. Breakfast was amazing and the old time diner atmosphere was so much fun.

Before Megan left for Pittsburgh, she was so touched by the outpouring of support she received from so many people. Once she got here, that support continued when she received a package in the mail from her good friend Dailey who sent her a nice warm blanket full of pictures of she and Megan together. They also sent her a black cat stuffed animal to remind her of her Boo Boo Kitty. Megan was so touched by their kindness. As I type this post, Megan is taking a nap with her new blanket and “Boo Boo Kitty Jr.” 🙂

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Megan also received such a nice surprise from the Morris Bakery this morning when they sent Megan a picture of their donuts. In honor of Megan and all kids fighting childhood cancer, they frosted all of their donuts in gold frosting to #gogold for childhood cancer. That was so kind of them and Megan was so happy to see this picture. Thanks Morris Bakery!!!

Although Megan is definitely preoccupied with her surgery this week, she is still focused on her fundraising efforts for childhood cancer research. She was thrilled when her mom’s Facebook birthday fundraiser brought in over $5,600 for her research project. Thanks to everyone who donated!!! She is also anxious for the Nelly’s Classic Car show that will take place in Wilmington on August 22. They are also holding a huge raffle for the cause, so come out on August 22 to see some amazing cars; enjoy some amazing food; and maybe win some big money!!! Once again, this event is being held to raise money for Megan’s fundraising efforts through CC-TDI. Thanks to the Nelson family for sponsoring this exciting event!!! Raffle tickets are available for purchase at Rt. 66 Old School Brewing in Wilmington.

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This is a very big week for Megan, and although it will be stressful for her, I know she is ready to get this done. I know she would appreciate everyone on Team Megan sending positive thoughts for her BTO procedure at 6:00 a.m. ET on Monday morning. I know she feels your support and it means so much to Megan and our family. Stay tuned to the Team Megan Bugg Facebook page for updates about the timing of the surgery to remove the tumor at the base of her skull. Positive thoughts lead to positive outcomes. Let’s do this!!!

Megan Makes an Important Decision

One of the unique aspects of Megan’s Journey with childhood cancer has been the transition of her being a 13-year-old 8th grader fighting this disease to a 20-year-old adult still in the battle. When she was a young teenager, Megan’s medical team always did a wonderful job of letting her know what was going on and seeking her input on treatment options. However, when she was younger, even though Deb and I would talk with Megan about it, we had the responsibility of making the final call. Fortunately, Megan’s input was usually right on the money and there was never any disagreement regarding her treatments. Once Megan turned 18, there was a shift in that responsibility because as an adult, Megan was now in charge of her medical decisions. She still asked that Deb and I stay involved and she always approved of us talking to her doctors, but in the end, the decisions involving her body were now hers to make.

Fortunately, other than a trained oncologist, I know of no one who is more informed on Alveolar Rhabdomyosarcoma (ARMS) than Megan. As she has traversed this difficult journey, Megan has connected with a childhood cancer community that extends beyond the United States to the entire world. As an adult, she has used these connections to learn everything she can about her disease and the potential treatments that are being utilized. In terms of treatments for ARMS, there is not much out there that Megan doesn’t know about. Through her connections with Dr. Keller and his research team at the Children’s Cancer Therapy Development Institute, she is even privy to research being done on ARMS that virtually no one else in the country is aware of. Since Megan is an adult and is now legally in charge of determining her own medical treatment, it is comforting to Deb and I to know how well-informed and mature she is in regards to her treatments.

As I have posted previously, Megan has been fighting a persistent tumor at the base of her skull for the past year. The good news is that it has been over two years since Megan has had any cancerous activity in any other part of her body. This means that her cancer is no longer metastasized, but is instead localized. That is a very good thing, because by and large, localized tumor is much easier to treat. The problem with her current tumor is that it has been radiated twice and has been treated with a chemotherapy drug but is still persisting. For the first time, Megan’s tumor has grown back in an area that was previously radiated, which was very concerning for her doctors. Due to such a severe lack of funding, treatments for childhood cancer are very limited, so since this is Megan’s 6th relapse of her cancer, clinically based chemotherapy treatments are not an option. There are chemotherapy drugs to try, but they are not clinically proven in relapsed ARMS and their efficacy is severely limited. Megan knows that for a localized tumor, the most effective option is to surgically resect the tumor, so she has been researching this option for some time.

After meeting with her medical team about a week and a half ago, Megan settled on two chemotherapy drugs that clinically have the best chance of success. Of the three available options presented to her by her oncologists, Megan knew the one she chose would have the worst side effect, but she also knew they had the best chance to slow down her tumor growth…so to her, the decision was an easy one. She started that chemotherapy combination this past Monday. Deb took her to the CDH clinic where she received a 90 minute infusion of Irinotecan and also took a chemo pill called Temozolomide, which is a drug usually used on brain tumors. The protocol calls for her to get both of these drugs for five days in a row and then she gets two weeks off for her body and blood counts to recover. I took Megan to treatment on Thursday and after so much treatment, she was obviously wiped out.

So far, Megan has handled these chemos remarkably well as she has not experienced the more severe side effects that can accompany their use. She has been really tired and after a full week of treatment, Saturday she was just wiped out. We were bracing for the possibility of more severe side effects, but so far, so good.

About two weeks ago, at Megan’s request, her hospital sent her records to three different doctors from across the country. Her goal was to find out if they thought surgical removal of her tumor was an option. The most promising option seemed to be Dr. Zenonos out of Pittsburgh who Megan’s research showed to be THE surgeon when it comes to skull-based tumor resection. This past Monday, we held a Zoom meeting with him to discuss Megan’s case. He had reviewed all of Megan’s imaging and records and after a long conversation, he said that he believed he could remove Megan’s tumor. Of course, there were some caveats that Megan needed to understand. In removing the tumor and getting to the margins, he would have to sacrifice the 6th cranial nerve that controls the lateral movement of her right eye. He also said the location of the tumor is very close to her right carotid artery, which means that a bypass surgery might be necessary. In this bypass surgery, they would take a vein from Megan’s arm and use it for the carotid artery bypass. He also told Megan that he thought he could resect the tumor by going through her nose like they did for her recent biopsy surgery, which was a relief to Megan. In the end, he told Megan there were risks and if she had clinically available chemotherapy or radiation options, he would definitely recommend that she try those first. However, given the fact that the area was previously radiated and that research based chemotherapy in her case is so limited, he thought that pursuing this surgical option was viable. I think what made Megan feel the best is when he told her that he believed there would be a positive outcome from the surgery. At the end of the meeting, he asked Megan if she had any questions, and in typical Megan fashion, she responded with, “I just want to know how soon you can do the surgery.” No matter what is going on around her, Megan’s focus never waivers…winning is her only goal.

So…Here is where things stand right now. We are leaving on Thursday to drive to Pittsburgh. Megan has an MRI and CT scan scheduled for 9:00 a.m. on Friday, July 30, which is the scan the doctor will use to guide his surgery. On Monday, August 2 at 6:00 a.m., Megan has to be at the hospital for a Balloon Occlusion Test (BOT) to test the strength of her right carotid artery. Depending on the results of the MRI and the BOT test, her actual tumor resection surgery will either be on Tuesday, August 3 or Wednesday, August 4. It will be on 8/3 if there is no carotid bypass surgery necessary, but if she does need the bypass surgery, they will perform both the bypass and the tumor resection on 8/4. Following the surgery, Megan will be in the hospital for at least three days, and then she has to stay in Pittsburgh for 7 more days for observation. It’s going to be a long time away from home and her precious Boo Boo Kitty, but in Megan’s words, “I wish this surgery was today.”

Although Megan knows she has some big medical procedures coming up and she just went through five days of chemotherapy, she did her best to keep winning each day as it comes. Kenzi came home on Wednesday to spend a few days with us, and she wanted to take Megan to one of her chemotherapy treatments. On Thursday, Kenzi and Megan decided it would be fun to go to Top Golf. When Kenzi called to make a reservation, the only time they had available was 8:30 p.m. Although that was pretty late for Megan, she was determined to go…which was after her fourth day of chemotherapy. Somehow she made it through and we had the best time. We all went to Buffalo Wild Wings for supper and then it was off to Top Golf. We had so much fun laughing with each other and just enjoying being together…and somehow, Kenzi has become a really good golfer!!! We didn’t leave Top Golf until 9:45 p.m. and although Megan was exhausted, it was the best kind of exhaustion and well worth it. Here are a few pictures from our golfing adventure.

Kenzi took Megan to her chemo treatment on Friday, and afterwards they headed to Portillo’s and then to Crumbl cookie. Megan said she had the best time with her sister, and I’m sure Kenzi made day #5 of treatment a little more tolerable.

Even through everything she is going through, Megan is still laser focused on her fundraising efforts through the Children’s Cancer Therapy Development Institute. She is currently working to raise $233,000 to fund an innovative research project on ARMS that could result in relatively quick results if successful. To date, she has raised over $114,000 and she is still going strong. So many generous people and organizations have assisted in her fundraising efforts, and one of her consistent supporters is Nelly’s Restaurant in Wilmington. On August 22, they are holding a classic car show with proceeds going directly to Megan’s fundraiser through CC-TDI. It should be an awesome event, so mark your calendars and come out to see some amazing classic cars and enjoy some great food and drinks. It should be lots of fun!!!

It seems like I say this over and over, but the next two weeks are going to be so important for Megan. I know that she would appreciate everyone on Team Megan sending their thoughts and prayers for her July 30 MRI, her August 2 BOT procedure, and her tumor resection surgery that will be on either August 3 or August 4. I know she feels your support and means so much to her.

As you know, Megan is a firm believer in the power of positive attitude and the power of the mind to heal the body. She does not allow doubt to enter her mind, and she will not accept negativity from anyone in her family or on her medical team. When the surgeon in Pittsburgh told her that he believed there would be a positive outcome, she was sold…and not just on his professional abilities, but on his optimistic attitude. She needed to know that he believed in her before she would commit to letting him treat her. We are following her lead and feel like she is in the very best medical hands for this next step in her fight. We all hold on to the belief that if this tumor is successfully resected, Megan will have beaten childhood cancer.

For some reason, cancer chose Megan. Six and a half years later, I bet it’s second guessing that decision. More to come…

Big Decisions

As Megan continued her recovery from last week’s surgery, she was faced with some tough medical discussions and some big decisions. There were times that emotions ran high as Megan took it all in while trying to make the most informed and best decisions possible for her. The end of this week leaves her with a preliminary treatment plan, but there is more to come this week as Megan continues battling the beast with everything she’s got. Childhood cancer hit Megan hard again this week challenging her physical and mental toughness, but as usual, by the end of the week she was once again standing strong and back to winning each day as it comes.

On July 7, Megan had a surgical procedure to take a biopsy of the current tumor located at the base of her skull. Thankfully, the surgery was a success, but her last PET scan along with the pathology report from this biopsy showed that this tumor was indeed active Alveolar Rhabdomyosarcoma. For the next few days Megan spent her time recovering from this surgery which left her with a very sore nose and some lingering pain in her head. This discomfort was added to the other daily issues Megan has to deal with as a result of over 130 weeks of chemotherapy, which includes painful digestive issues, fatigue, and too many aches and pains to delineate in this post. She was also dealing with nightly severe joint pain caused by Dexamethasone, which is a steroid she has been on to reduce the swelling in the area of the tumor. Needless to say, trying to get any quality sleep for her was definitely a challenge. However, through all of this, Megan was also using her childhood cancer community connections to stay in contact with various medical experts from across the country. She was looking for as much information as possible before talking to her own oncology team about the next step in her treatment.

On Wednesday, Megan went back to the ENT surgeon for a follow-up appointment where she was told that her surgical area was recovering nicely. She had to endure some painful digging around in her nasal region, but to get a good report was a relief. The rest of the day, Megan was pretty anxious as she new that her next appointment was on Thursday with her medical team to determine how best to move forward with her treatment.

Before I get to Thursday’s appointment, which was difficult and full of emotion, it’s important to take a moment to explain Megan’s mental approach to fighting childhood cancer. You have to understand how she views things in order to fully understand why Thursday’s meeting was so difficult for her. From Day #1 of “Megan’s Journey”, her mindset has been an unequivocal belief that she will beat cancer. I have shared this story in other posts, but the event is still as fresh in my mind as if it happened yesterday. When Megan was first diagnosed as a shy 13 year old 8th grader, she was lying in a transport hospital bed getting ready to go down for another round of MRI scans. Her mother and I were standing by her bedside and admittedly, we were both emotional at the gravity of what was happening to our beautiful girl. At that moment, Megan looked at both of us and sternly stated, “Please don’t say ‘I’m sorry’, because when you say that it makes me think you don’t believe I will get better, and I will get better.” From that moment on, the theme of Megan’s now 6 year and 7 month battle with childhood cancer was set. Megan was going to win. She didn’t know how long it would take, and at that time she had no idea how strong the grasp of childhood cancer could be, but that belief in herself has never wavered. After 5 relapses, over 130 weeks of chemotherapy, 200 radiation treatments, and four surgeries, her will to win and the belief in her body is, remarkably, as strong as ever.

Over the years, Megan has demanded that everyone on her team remain positive and share her belief in her ability to win. Of course she realizes that her medical team has to be honest with her about her case, but she refuses to dwell on the negative…especially when it comes to childhood cancer statistics. As Megan says, no one on her team better ever reduce her to a number. When Megan supports other childhood cancer fighters who are disillusioned by what they read on the internet or what the medical experts say about their odds, she reprimands them to never let themselves become simply a statistic. According to the statistics, Megan shouldn’t be here right now, but she is…and I share Megan’s belief that although her medical care has been exemplary, it is her positive attitude and mental toughness that have kept cancer at bay. When she hears things like the limited success rates of treatment options, she knows she has to hear it, but she refuses to let those around her dwell on it. If there is a 15% chance of success, then in her mind, she is going to be that 15%. Any other thought process is unproductive in this battle. Therefore, any doctor who is going to share treatment options and the related statistics with her needs to be prepared for pushback, because there is no room for negativity in her fight. By nature, I am a very logical thinker who believes in science and competent medical care, and Megan’s Journey has only reinforced my beliefs. However, thanks to Megan, I have also become an ardent believer in the power of the mind and it’s thoughts. Positive attitudes lead to positive results, while negativity gives the beast the opening it is looking for.

On Thursday afternoon, Deb and I went with Megan to her appointment where both of her oncologists met with us. I give her oncologists so much credit because not only do they reach out to the other tumor experts at Luries Children’s Hospital, but they communicate with other doctors and researchers to thoroughly review any information Megan provides to them. The beginning of this meeting was really tough as her doctors told her of the seriousness of her case and how they were limited in treatment options due to the numerous relapses Megan has experienced. They also provided three different treatment options all with varying levels of toxicity, but all with about the same limited efficacy rate. It was that limited success rate that Megan got tired of hearing about, which elicited an emotional response from her reminding them that she understood the odds, but needed to know that they still believed in her ability to win. In Megan’s research, she believed that the option that gave her the best chance of success was a new chemotherapy combination that included a new drug, Temozolmide (pill form) with a drug she previously had during her first 54 week treatment protocol, Irinotecan. Although her doctors told her that these two drugs would be the toughest on her body, there was no hesitation in her mind that she was going through with this new chemo treatment. Irinotecan is given via infusion for five days in a row and then she gets two weeks off of treatment. While taking Irinotecan, she will also take the Temozolmide pill for those five days. So starting on Monday (tomorrow), Megan will begin yet another chemotherapy regiment that she believes gives her the best chance of success.

While she starts this new chemotherapy protocol, we are also awaiting the results of the full genetic testing they are conducting on Megan’s tumor biopsy. It could be another two to three weeks before those results come in, but those results could provide information regarding another medical approach to her treatment. Megan is also still pursuing her investigation of a surgical option to remove the tumor. Her best lead is on a surgeon out of Pittsburgh whom she is holding a virtual meeting with this week. Although she has been told that surgery may be a long shot, she remains optimistic that these surgeons might be able to successfully resect her tumor. If that option becomes a reality, it would most likely happen within the next three weeks.

Although Thursday’s meeting was emotionally charged, Megan recovered quickly and set about winning the weekend. On Friday, she went with her friends from the Broadway Dance Studio for lunch, dessert and coffee…and after some shopping, another snack ;). Miss Kim, Emma and Jaime have been such incredible supporters of Megan and following Thursday’s meeting with her medical team, a day with her girlfriends was just what she needed.

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On Saturday morning, we were up at 4:30 a.m. and out the door at 5:00 a.m. Megan had been talking with Kenzi and they planned for us to meet her at the huge farmer’s market that is held every Saturday in Madison, WI on the Capitol Square. If you are ever looking for a weekend adventure, I would highly recommend planning to go to the Madison farmer’s market on a Saturday morning and then enjoying all of the other amenities Madison has to offer, including lunch overlooking the lake on the Union Terrace. It really is an amazing city, and we couldn’t believe the selection of goods at the farmers market. We had so much fun…and the girls got to spend the morning together, which was priceless.

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We got home from Madison late Saturday afternoon so Megan could get over to Miss Kim’s son’s house to dog sit for him. In addition to Chip, they just got a new puppy, Skyler, and of course Megan was all in. She ended up staying with the puppies until about 9:00 p.m.

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On Sunday, Megan caught up on a little sleep before making a Starbucks run with Makenna Emerson who was home for the weekend. It’s really remarkable, because if you were with Megan today, you would have no idea that she is starting a new chemotherapy treatment at 9:00 a.m. tomorrow morning. She just refuses to ever let cancer feel like it is getting the best of her. After six and a half years, this battle is still far from over. Megan has already stepped in the ring for round after round as she continues to battle this powerful enemy, but the amazing thing is, as the fight continues, Megan is only getting stronger and her resolve is growing even more powerful.

If you believe in yourself, anything is possible. Until next week…

Surgery, Recovery…and Waiting

During Megan’s six year and seven month battle with stage 4 Alveolar Rhabdomyosarcoma, she has been through many trying moments. There was the trauma of her original diagnosis on December 30, 2014. There was that first chemotherapy treatment to follow and the first time the nausea overcame her that same night. There was that entire first 54 week protocol that after only 11 weeks landed her in the ICU for nine days with a dangerous sepsis and c-diff infection. There was the nerve damage caused by the chemo drug Vincristine that caused such neuropathy in her legs that I had to carry her up the stairs to her bed each night. There was the trauma of not just one, but multiple relapses of this vicious disease. There was the constant “scanxiety” that accompanied each three month scan. I could go on and on, but suffice it to say that Megan has been through more at the hands of childhood cancer than any young person should ever have to endure. This past week was another of those difficult moments as Megan endured the anxiety in the days leading up to her Wednesday surgery; the actual surgery; recovery; and waiting to learn of the plan for her treatment. It’s been a very hard week, but Megan’s incredibly positive outlook coupled with the support of family and friends has allowed her to power through while still looking for that elusive light that would finally end this long and arduous journey.

To review, Megan’s June 22 MRI showed a suspicious mass growing at the base of her skull. To make matters worse, this mass was in an area that had previously been treated with proton radiation, which is the first time that has happened in Megan’s history with this disease. As a result, further radiation to the area was not an option, which left either another experimental chemo combination or surgery to remove the mass. As an intermediary step, her medical team decided it was time to get a biopsy of the mass to determine whether or not it was still ARMS. Oftentimes, kids who have received intensive chemotherapy over a long period of time can develop new types of malignancies. The best case scenario would have been this current mass showing as a new type of cancer, which would open up other chemotherapy options. Her doctors also wanted to run genetic testing on her tumor to see if there were certain drugs that might be able to slow down, or even stop the current tumor from advancing. The reason her medical team didn’t want to biopsy this tumor previously was because it had been responding to proton radiation and this was an invasive procedure. After hearing the rationale, Megan agreed that it was time to have this surgical procedure done.

Megan’s surgical team at Central DuPage Hospital consisted of an ENT surgeon, a neurosurgeon, and her anesthesiologist. Megan has gone under anesthesia so many times that she has developed a very trusting and friendly relationship with Dr. DeGraca. When Megan heard he was once again going to be on her case, she was so relieved. The pre-surgery meetings with her surgeons went fantastic as both seemed extremely positive, compassionate, and sure that they could pull off Megan’s biopsy surgery endoscopic by going up through her nose and through the sinus cavity to get to the tumor. After the meetings, Deb and I spent Monday and Tuesday trying to keep Megan has busy as possible so she didn’t have too much time to think about her upcoming surgery. It also helped that Kenzi came home Tuesday afternoon to be here for Megan’s surgery and recovery.

On Wednesday, we had to have Megan at CDH by 11:30 a.m. for her 1:00 p.m. surgery. Although she wore a brave face, it was obvious by her questions that she was nervous…and who could blame her? At 1:30 p.m. Deb and I said goodbye in the pre-op room and Dr. DeGraca rolled her down to surgery. The next three hours seemed like an eternity, but the nurse practitioner in the surgery kept sending text updates letting us know Megan was doing treat. At 5:30 p.m. we got a call that the neurosurgeon was ready to meet with us. He said that the surgery went great and they were able to get a large biopsy. In fact, he said that they resected a fairly large portion of the tumor without getting close to any of the vital nerve areas in that area. At our request, they also sent a sample of the tumor to the Children’s Cancer Therapy Development Institute so Dr. Keller and his team could run tests on it as well. We were disappointed to hear that the pathologist immediately said the tumor was still ARMS, but overall we were very relieved that the surgery was a success and Megan was okay.

At about 6:10 p.m. we were finally able to see her in the ICU. When we saw her she was just waking up and was in some intense pain in her nose and head from the surgical process.

It wasn’t too bad while she was still under the effects of the anesthesia. Since we were only allowed to have two visitors in her room at a time, that was good timing for Kenzi to come in. It really helped Megan to hold Kenzi’s hand and hear her voice for a few minutes. Kenzi also brought Megan a gift of a Starbucks cup filled with her favorite candy…and of course, a Starbucks drink. Her sister knew just what she needed.

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Once the effects of the anesthesia wore off, things got pretty rough for Megan. It took most of that evening to try and find an effective pain management plan and even when they did, it was short-lived. Needless to say, Wednesday night was a very long night as Megan slept no more than 30 minutes at a time for a maximum of maybe two hours.

The next morning she was still struggling, but had to be taken down for a post-surgery CT to make sure there was no bleeding from the surgery. Megan was miserable as she was out of it from the pain medication, and the pain meds had started to cause nausea for her.

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As soon as she got back to the room from the CT she started to throw up and that continued every time she tried to eat something or get up to use the bathroom. Finally, the pain in her nose and head started to calm down at about 6:00 p.m. on Thursday evening and they were able to reduce the pain medication. Thursday evening she finally was able to sleep and didn’t need pain medication at all, which was such a blessing. By Friday morning, her oncologist came in and said as long as she could eat and keep it down for two hours, she could go home. That was all Megan needed to hear as she sent me for some food and after two hours we were finally home by about 12:30 p.m on Friday. It didn’t take long for Boo Boo Kitty to welcome her home.

Since Megan got home, she has been really tired and has been dealing with constant digestive issues, but the pain from the surgery has been tolerable. She did develop a reaction last night to the steroid they have her on, which finally required us to contact her oncologist at 3:30 a.m. this morning. Megan was experiencing severe pain in her ankles and knees, which she told us was a 9 out of 10. She was in tears, and given Megan’s pain threshold, that is some serious pain. We tried the pain meds they gave us for her post-surgery pain management, but nothing was working. Her oncologist said it was most likely a reaction that can happen in the joints from high doses of Dexamethasone. He suggested we give her Napraxan, which actually gave her some relief. Thankfully, she was able to finally get about three hours of uninterrupted sleep.

When Megan arrived home from the hospital, of course she was exhausted; in pain; and very anxious about the next step of her journey. That’s when friends and family make all the difference. Kenzi was still home to welcome Megan back and Kenzi’s boyfriend Nick was also here. Also, Makenna and Madison Emerson came over multiple time. Although Megan’s energy level only allowed gave her about an hour window at a time for activity, Kenzi, Nick, Makenna and Madison always made sure she had something to do when she was feeling up to it. When Megan got home, Kenzi made Megan’s favorite pesto pasta dish that she thought was awesome.

The girls also made a trip to the Polk-a-Dot in Braidwood so Megan could have a fish sandwich and cheese fries that she had been craving.

The girls also played board games with Deb and of course, made the trip to Starbucks to get Megan refueled.

Megan did receive some positive news this week as thanks to many generous donations, her fundraising efforts for childhood cancer research through CC-TDI have now raised $103,000 for her new project, which has a goal of $233,000 to fully fund the project. Megan had previously raised enough to get this new project off the ground, and I am excited to say that CC-TDI has reported very positive results in their initial research. Wouldn’t it be something if the research project Megan has been funding actually resulted in a solution for her own personal battle? Unfortunately, due to the lack of attention towards childhood cancer from the pharmaceutical companies and the Federal Government, that’s what it has come to for childhood cancer patients and their families…doing their own fundraising for research that could cure them. Deb and I share Megan’s belief that when the cure for ARMS comes to fruition, it will come from Dr. Keller and his team at CC-TDI.

Even though Megan has been preoccupied with her surgery and recovery this week, she has still managed to stay focused on her fundraising efforts through CC-TDI. She was thrilled when Annette and Mitch Hamman stopped by on Saturday morning to present her with a check for $1,260 that Annette had raised through he private business. She also received a $500 donation from very generous relatives of mine. Every penny Megan raises goes directly to her fundraising efforts through CC-TDI. To date, Megan has raised $530,000 to fund childhood cancer research and she will not quit until a cure is found.

This was a very hard week, but Megan has gotten through it by showing her usual positive attitude, determination and grace in the face of adversity. Our next step is to meet with her medical team to determine the next phase of her treatment. Due to a lack of funding for childhood cancer research, Megan’s treatment options are limited, but she has a team of medical professionals from across the country working on her behalf, and we remain positive they will come up with the right plan. Until then, Megan will continue recovering; continue advocating; and continuing to spread kindness and hope to the other brave kids who are in this battle with her. Thank you again to everyone on Team Megan who has been sending positive thoughts and prayers her way. I know she feels and appreciates your support.

Until next week…

Looking for Answers

The last two weeks have been trying for Megan as she continues to look for answers while working with her medical team. Her June 22 brain MRI showed a suspicious mass in an area at the base of her skull that had previously been treated with proton radiation. This discovery was not only significant because it could be cancerous growth, but also because it is the first time in Megan’s six and half year history with cancer that growth has occurred in an area that was previously treated with radiation. To make matters even more stressful for her, her radiation oncologist told her that if it was indeed cancerous growth, there was nothing more he could do for her in terms of radiation treatments. That left her with two options: either another experimental chemotherapy drug or surgery to remove the mass. On the way home from hearing this news, Deb and I were still taking some time to comprehend and digest what we just heard, but not Megan. We weren’t even out of the parking lot before she was reaching out to her childhood cancer community for recommendations of clinical trials and neurosurgeons. By the time we made the hour drive home, she had already emailed two surgeons and a researcher who specializes in ARMS. By the next morning, we were contacting the CDH clinic to have records sent to these surgeons so they could provide her with their input on her options. In this battle, your determination to succeed is everything, and Megan’s determination never waivers.

On Monday afternoon, Megan’s oncologist contacted her to let her know that after discussing her case with their team, they decided it was now worth the risk to get a biopsy of the mass at the base of her skull. The current mass is located right behind her sinus cavity on the right side of her head. Although it’s pretty obvious that something is going on there because of the symptoms she has been showing the last two weeks (increased double vision and headaches), her medical team still wants a biopsy to determine whether or not it is ARMS. The best case scenario would be that it is another type of malignancy which would open up new chemotherapy options for her. Her team felt it was important to rule out another type of cancer before investigating another experimental chemo or even a surgical removal option. Megan never hesitated and asked them to move things along as quickly as possible.

On Tuesday, Megan had a consult with a neurosurgeon who would be involved in her biopsy surgery. Megan really liked him as he showed lots of compassion and made her feel very comfortable. We then drove to Delnor Hospital to meet with an ENT surgeon who would also be involved with her biopsy surgery. She seemed extremely knowledgable and Megan felt like she would be in good hands. In summary, they will be performing her biopsy surgery endoscopic by going through her nasal cavity and then through the sinus cavity to get to her tumor. She will be in the hospital for at least one night just to make sure there is no internal bleeding and her pain is under control. If everything goes according to plan, Megan will have this surgical procedure at CDH on Wednesday and hopefully be home sometime on Thursday.

On Friday afternoon, Megan had another full body PET scan so her team could compare the activity in her tumor from the last PET. There is still an outside chance that this is dying tumor, which would show on the PET scan. If it is live tumor, it will show up with more intensity on this PET scan, which means Wednesday’s biopsy will be a go. Her PET scan was not until 3:30 p.m. on Friday, and then right after that we drove to CDH for her to get a CT scan of her head in preparation for Wednesday’s biopsy surgery. It was a very long day for Megan as she could not eat all day, but right after we went to her favorite sushi place in Naperville. After eating sushi, Megan enjoyed a surprise cake pop from Starbucks that her mom got for her.

On Wednesday, Megan and I decided to take advantage of her day off from medical appointments to go see the Cubs play in Milwaukee. The game started out great as the Cubs scored 7 runs in the first inning, but it turned ugly quick as her Cubs lost 15-7. Even with the lopsided score, Megan and I stayed for the entire game and had a great time. It was a long day, but a great way to keep her mind off of cancer for a few hours.

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Kenzi and her best friend from college, Ellyn, went on their graduation trip to an all-inclusive resort in Mexico. They had a blast together for their 5 day trip.

Megan was excited because before they went to the airport last Sunday, Kenzi stopped by so Megan could watch her hedgehog for her. Megan had fun playing with him every evening 🙂

On Friday, Deb picked Kenzi and Ellyn up from the airport and they stayed with us until Saturday afternoon. Kenzi wanted to stay long enough to see Uncle Todd and his family who came over for lunch and an afternoon of swimming. It was a beautiful and fun day. As usual, by the time I remembered to get any pictures Kenzi and Ellyn had already left 😦

Here is a picture of Megan and Uncle Todd’s grandson, Theo.

Megan was recently contacted by an organization called Project Outrun. They work with childhood cancer patients by letting them design their dream shoes with the symbolism that these shoes will help them outrun cancer; outrun fear; and outrun sickness. Megan had a such a good time designing her personal shoes and when they came in earlier this week, she was very excited. She was also thrilled that after sharing her story with Project Outrun, they agreed to send a pair of her custom shoes to Dr. Keller at the Children’s Cancer Therapy Development Institute, which is where Megan is raising funds for childhood cancer research.

Megan was so touched this week by the kindness of the late Judy Brown and her family. Judy has been a long-time friend of Deb and she developed into an ardent follower and supporter of Megan’s Journey. When Judy found out she was fighting cancer, she would often reference Megan as her source of strength and determination to keep on fighting. Judy fought a valiant battle, but is now at peace as she recently passed away. Her wish was that in lieu of flowers, donations go towards Megan’s fundraising efforts through CC-TDI. Her obituary stated

In lieu of flowers, please donate to the fundraising efforts of childhood cancer survivor, Megan Bugg, who Judy admired as a source of strength, hope, and inspiration during her own battle with cancer.

Thanks to the generosity of Judy and her family, $1400 was raised in her name to aide in Megan’s fight for childhood cancer. Rest in peace Judy.

Megan has put her incredible determination and inner strength on full display this week as she has been poked, prodded, and talked to by so many doctors and nurses. There is no doubt Megan is so strong, but she is human, and there are times when the gravity of her situation gets the best of her. When those moments come, Boo Boo Kitty is always right there as a source of comfort.

It is perfectly understandable that she experiences those moments of doubt and fear, but somehow, she has mastered the skill of never wallowing in the negative. Instead, she always finds a way to bounce back and get mentally prepared for the next challenge ahead. This week, that next challenge will come with her biopsy surgery on Wednesday and the answers that follow. I know Megan would appreciate the kind thoughts and prayers of everyone on Team Megan this Wednesday. Cancer has thrown yet another barricade in front of Megan, but as always, she will find a way to overcome this latest obstacle and continue down the road towards recovery. Until next week…

The human spirit is stronger than anything that can happen to it.

C.C. Scott

Constantly Living on the Edge

Whether you are currently fighting childhood cancer or you are a childhood cancer survivor, you know what it’s like to live with the fear. You live from scan to scan, which in Megan’s case has been at least every 3 months for the past six and a half years. Childhood cancer survivors become experts and living in the moment and become so thankful for the relative peace that can come in between those dreaded scans. Somehow, Megan has mastered this skill as she always manages to focus on winning one day at a time, but as the scan date gets closer and closer, the “scanxiety” can’t help but creep in. It is like you are constantly living on the edge where the news of a single scan can send you into euphoria or despair. This past week was scan week for Megan, so as usual, she ran the gamut of emotions, but in the end, her resolve remains as strong as ever.

When we know Megan’s scans are upcoming, the most important thing is to plan activities that keep her mind occupied. Late evenings are the hardest times for Megan, because that’s when she is left alone with her wandering thoughts. It’s also difficult for her if she is alone during the day, so a busy schedule was definitely the best medicine with her brain MRI scheduled for Tuesday, June 22.

The weekend prior to this one, we were at the Bugg family farm celebrating Grandma Bugg’s 81st birthday. One of Megan’s favorite things to do when we are home is to watch the Chicago Cubs games on television with me. On Monday, we decided to do one better and make the drive to beautiful Wrigley Field to watch the Cubs vs. the Indians. We left Coal City at about 4:00 p.m. for the 7:05 p.m. first pitch and we had a blast. Since her 132 weeks of chemotherapy, Megan has developed a sensitivity to the heat where it makes it very difficult for her to breath. Luckily, it was a perfectly cool night at Wrigley, so she was comfortable for all nine innings.

It would have been nice had the Cubs played a little better, but it was so exciting for Megan to be in the park…and of course…she was a big fan of the helmet nachos 😉

We got home from the Cubs game at 12:15 a.m. and then I had to wake Megan up again at 4:15 a.m. so we could head to Central DuPage Hospital for our 5:45 a.m. arrival time. Although I was pretty tired, it worked out really well for Megan as she was sound asleep when we got home from the game and then we left right away a few hours later which didn’t really give her any time to think about her upcoming brain scan. Megan got called back for pre-op at about 6:30 a.m. where Nurse Jennie met her to access her port. As usual, Jennie showed up for work an hour early just to make sure Megan’s port was properly accessed. Nurse Jennie is typical of all of the medical professionals at the CDH clinic who continually go above and beyond for her. After that, her anesthesiologist, Dr. DeGraca showed up to talk with her. Over the past five years, she and Dr. DeGraca have developed a friendship, and he always makes sure he is on her case whenever her name shows up on the schedule. At 7:30 a.m. they took her back for her brain MRI under anesthesia and by 10:00 a.m. they let me know she was waking up and I could go see her.

As usual, Megan handled the entire process with ease and then we immediately headed to the other side of the hospital for her second chemotherapy treatment of Round #9. When her oncologist came in to talk with her, Megan was starting to get more nervous about getting her MRI results. She asked her doctor if they could at least look at the images to see if there was anything obvious. Her doctor did one better and said he would walk down to radiology to see if someone was there who could take a quick look. He came back to let Megan know that nothing obvious showed up, but she would have to wait until her neural radiologist reviewed the results to know for sure.

Megan had an appointment with her radiologist on Thursday afternoon to go over the results, and that turned out to be a very tough meeting. He told her that although he couldn’t be sure yet, it looked like there was new tumor growth in an area that had previously been treated with proton radiation. In Megan’s entire six and a half year history of radiation treatments, she has never had a tumor reappear in an area that had been treated. Her radiologist was honest and told her that if this is really the case, it is concerning because the area could not be radiated again. That would leave her with two options: either a different chemotherapy drug(s) or skull based surgery. He did caution that without a new PET scan, there was no way to know for sure whether or not what he was seeing on the MRI was new growth as there was still a chance it was a dying tumor. To be sure, he ordered a new PET scan for Megan scheduled at noon on July 5. After those results, we will know what we are dealing with.

Although Megan has been feeling pretty good, she has been concerned that her eyesight that was improving is once again deteriorating. Her double vision has once again gotten to the point that she is worried about driving. She called her ophthalmologist who kindly snuck her in for at 8:30 a.m. appointment this Monday to check and see if he can temporarily correct her vision.

One of the many remarkable things about Megan’s Journey has been her determination to win. It seems that no matter what news she hears, her resolve just grows stronger. Make no mistake…Thursday’s meeting with her radiologist was a tough meeting as it is the first time ever she has heard a doctor say that if this tumor is active, there was nothing more he could do. However, instead of hanging her head and feeling sorry for herself, Megan spent the entire drive home on the phone with Dr. Keller at CC-TDI and reaching out to her childhood cancer network from across the country to get names of the best skull based surgeons in the country. By the time she went to bed on Thursday evening, she had made email contact with some of the top surgeons and was preparing to get her records sent to them for review. As she said, if the July 5 PET shows positive activity from this tumor, she doesn’t want to waste any time moving to the next step. Megan has taught me so many important life lessons, but one of the most important is the realization that when things aren’t going your way, you have two choices: you can feel sorry for yourself, or you can decide to do something about it. Megan has always chosen the latter. Sometimes it seems that her inner strength is other-worldly.

Our family has stayed very busy all weekend as Friday Megan went to physical therapy and after I got home from work our family went to Naperville to do some shopping. Saturday morning we went to Morris so Megan could get some much needed Starbucks and we also ran a few errands. That afternoon we planned on going up to Trader Joe’s, which is one of Megan’s favorite places, but the severe weather warnings didn’t cooperate with us. That allowed us to make the Trader Joe’s trip today and as I type this post, Megan and her mom are sitting at the kitchen table playing games.

It has been a difficult week in so many ways, but at the same time, I have drawn so much inspiration from how Megan has handled this latest adversity. Life is so precious and every day we have a choice…we can either focus on the negatives of our lives or we can be thankful for what we have. We choose to continue following Megan’s lead and focus on winning each day as it comes. Until next week…

This Doesn’t Get Any Easier

The past couple weeks were full of adventure and advocacy ranging from a visit to the Children’s Cancer Therapy Development Institute in Portland, Oregon to a very successful golf outing held on June 12. Although Megan was exhausted each night, she managed to fight her way through all of it for her larger cause, which is to end childhood cancer forever. In previous posts, I have mentioned how the grasp of childhood cancer is so strong, and just when you have been able to put the vicious disease in the back of your mind, it strengthens its grip to remind you yet again of its evil power. Childhood cancer is awful in so many ways; not the least of which is the fact that the toxic treatments can often cause worse pain than the disease itself. Chemotherapy is rough, and Megan has now been through over 130 weeks of various chemo drugs. Although she has learned how to take care of her body to tolerate the treatments as best she can, the cumulative effects of chemotherapy inevitably add up. Megan has been fighting cancer for six and a half years, and I can tell you from personal experience, it never gets any easier.

On June 12, the “2nd Annual Team Megan Golf Outing” proved to be another rousing success. Thanks to the Jezik family and so many other generous participants and volunteers, the event once again cleared a little over $20,000!!! To say Megan was thankful and excited would be an understatement. She is currently working to raise $233,000 to fund a research project at the Children’s Cancer Therapy Development Institute that could provide quick hope and relief to current victims of RMS. Going into the golf outing, Megan had already raised nearly $28,000, so adding another $20,000 on top of that gets her that much closer to her goal. As Megan knows all too well, kids fighting sarcoma cancers don’t have the luxury of time, and since our country has made no improvements in survival rates for the past 50 years, it is way past time for a change. Thank you to everyone who came out and braved the heat to make this year’s event a huge success. Every penny raised will go directly to fund Megan’s research project at CC-TDI.

On Sunday, June 13, since Kenzi was already home from Madison, WI for the golf outing, we held her graduation party for family and close friends. We continue to be so proud of everything Kenzi has accomplished at UW and look forward to her continued success as she begins her Masters studies at UW with the goal of becoming a Speech-Language Pathologist. She has a passion for helping disabled children and young adults be heard, understood and valued and I can’t wait for her passion to become her profession. Here are a couple pictures of her with her undergraduate diploma that just came in the mail.

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On Tuesday, Megan had to go back to CDH to start her 9th three week cycle of the experimental chemotherapy treatment she has been using. Although she has handled these treatments pretty well, it is apparent that the cumulative effects of the continued chemotherapy is starting to take a toll on her. After Tuesday’s treatment, she felt exhausted, experienced muscle fatigue and cramping, as well as headaches and nausea. She did her best to shake it off and keep going, but each day there would come a time when she just had to lay down. Although we have lived this for over six years, seeing your child like this never gets easier.

As I mentioned earlier, Megan did her best to keep moving. She even tried to make some cupcakes for a friend and for our neighbors, but midway through she just ran out of steam. Megan still loves to bake, but it is hard for her to meet a deadline right now because she just never knows day to day how she will feel. Here she is working on a batch that she baked on Friday.

Speaking of cupcakes, Aunt Tammie came to the rescue once again on Saturday as Megan was planning to make dozens of cupcakes for Grandma Bugg’s big birthday celebration on Sunday. On Saturday morning, Megan went to Tammie’s house and they came back with seven different types of cupcakes that were all unbelievable!!! Thanks Tammie!!!

Today, we were all at the Bugg family farm south of Decatur to celebrate Grandma Bugg’s 81st birthday. Grandpa had planned on a big 80th birthday party for her, but COVID took care of those plans, so he postponed until today. As usual, Grandpa doesn’t do anything halfway, so he had about 75 people there with a full catered meal. It was so good to see everyone as I was able to catch up with extended family and friends that I hadn’t seen in years. Kenzi even made the long four and a half hour drive from Wisconsin to be there for the celebration. Here is a picture of the girls with their birthday Grandma.

This is going to be another very big week for Megan as she has a brain MRI under anesthesia this Tuesday morning. Her last MRI and PET scan showed some activity in the persistent tumor at the base of her skull, but since the scans were completed so close to the conclusion of her radiation treatments, her medical team could not be sure if what they were seeing was dying tumor or live tumor. Of course, we are confident that Tuesday’s MRI will confirm dying tumor, but our optimism doesn’t make the accompanying “scanxiety” any easier for Megan to deal with. And then to top off her Tuesday, as soon as she comes out of anesthesia, she has to make her way to the CDH clinic to receive her second dose of chemotherapy for Round #9. Tuesday will be a very long and anxious day, so I know that Megan would appreciate everyone on “Team Megan” sending positive thoughts to her early Tuesday morning. I know she feels your support, and we are so grateful.

Megan is not alone in her experience with childhood cancer. This disease seems like a war that just will not end. Yet, through it all, somehow Megan maintains her determination and motivation to not only win her personal battle, but to persevere in a much larger cause, which is to end childhood cancer for good.

Although I do not run as much as I used too (age has taken a toll!), I still enjoy reading and watching videos about various running events. I recently watched a documentary on the Barkley Marathons, which is a brutal endurance race held in the hills of Tennessee. During the video, the founder of the event, Lazarus Lake, said something that made me think of Megan and all of these brave kids fighting childhood cancer who just never quit and who keep on smiling in the face of incredible adversity.

“True success is not the absence of failure. It is the refusal to surrender.”

Lazarus Lake

On this Father’s Day, I encourage all you dads out there to give your kids an extra hug and never be afraid to tell your kids how much you love them. My greatest joy in life is being a #girldad

The Gift of Hope

It is 5:35 p.m. on Sunday evening, and I finally have time to sit down for a few minutes and chronicle what was an incredible past week. This was Megan’s recovery week from chemotherapy before she starts Round #9 this coming week. As a result, we made lots of plans to fit everything into a time when Megan was feeling well enough to travel and entertain guests. This week was inspiring, humbling, and emotional all wrapped into seven amazing days, and in the end, we received the greatest gift of all. The gift of hope.

Last Sunday evening, Megan, Deb and I flew out to Portland, OR to visit the Children’s Cancer Therapy Development Institute. Megan has partnered with Dr. Charles Keller and his team to fund childhood cancer research specifically germane to Rhabdomyosarcoma (RMS). Over the past five and a half years, thanks to the generosity of so many people and organizations, Megan has raised $454,129 to fund childhood cancer research at Luries Children’s Hospital and the Children’s Cancer Therapy Development Institute.  Her most recent fundraising project resulted in $214,000 to fully fund the preclinical trials for a very promising drug that could help RMS patients. Thanks to Megan’s funding, the preclinical trials have been successful and the drug is ready to move to the next phase of trial. If successful, this drug will be only the 11th drug EVER approved for primary use in childhood cancer (compare that to the 12 new adult cancer drugs that receive FDA approval EVERY YEAR!!!).

Once Megan achieved her first goal, she spoke with Dr. Keller about funding a research project that could result in much quicker drug approval for kids with RMS. Due to a lack of funding for research, the dismal life expectancy for RMS has remained virtually unchanged for 50 years. Therefore, kids with this awful disease do not have the luxury of waiting the 6-10 years that it takes for a new drug to receive FDA approval. Megan and Dr. Keller came up with the idea of funding a dedicated researcher whose only job would be to continuously test already approved FDA drugs to see if they are effective in treating RMS. If any of these FDA approved drugs prove effective, it is a much quicker process to get them transitioned for use in treating childhood cancer. Megan was very excited about this research project because it could give kids like her hope, and I can tell you from experience, that’s the elusive word that childhood cancer patients and their families long for–HOPE.

In order to fully fund this new research project through CC-TDI, Megan needs to raise $233,000. She has already raised $28,000 and with that money, research has already started on testing already approved cholesterol medications to determine their effectiveness in treating RMS. Megan has been wanting to visit CC-TDI to see this incredible research facility first hand, but COVID restrictions and her treatments made travel impossible. Therefore, when she saw an opportunity in her schedule to make it happen, she contacted Dr. Keller and in a matter of a couple days the trip was planned. Megan was so excited to see the lab and meet Dr. Keller in person.

After arriving in Portland on Sunday night, we spent the day on Monday doing some sightseeing around the beautiful city and surrounding areas. As usual, we started the day at 8:00 a.m. and didn’t get back to our hotel until nearly 9:00 p.m. Here are a few pictures of our journey. I will start at our visit to the International Rose Garden, which was beautiful.

We then went to a Japanese Tea Garden, which was so tranquil.

We also hit some other Portland classics like Powell’s Book Store, Pittock Mansion, and even crazy sites like the smallest city park, and the smallest horse statue 🙂 We even found a redwood tree by the side of the road and got a quick picture.

We ended the day making the 90 minute drive to the ocean to see Haystack Rock and hoped to see Puffins, but much to Megan’s chagrin, we didn’t have any luck with the latter.

After Monday’ whirlwind, we were up early on Tuesday to spend the entire day at the Children’s Cancer Therapy Development Institute. The work Dr. Keller and his team are conducting is absolutely amazing. Everyone at CC-TDI shares Dr. Keller’s passion for making all types of childhood cancer survivable. When you walk in the front door, you immediately see pictures of childhood cancer warriors and their families everywhere. In a country where our government and pharmaceutical companies always place childhood cancer at the back of the bus, CC-TDI gives the disease a front row seat. Dr. Keller and his team set an entire agenda for the day where Megan learned all about their research, spoke with the scientist who is dedicated to the research study Megan is funding, and we even learned about the genetic study Dr. Keller did on a sample from one of Megan’s tumors. To say it was an incredible day would be an understatement. As I told Dr. Keller and his team when we had supper with them, they are providing the hope that the childhood cancer community so desperately needs. I firmly believe that when RMS is cured, it will come from the lab of CC-TDI. Here is a picture of Megan and the brilliant Dr. Keller posing next to the portrait of Megan that is always hanging in the CC-TDI lab.

This is a picture of the researcher Megan is funding who will be dedicating her time towards this research project. She was a delightful and passionate young scientist who Megan hit it off with right away.

Here are a variety of pictures from the lab as Megan spent the day with different scientists learning about all of the research taking place at CC-TDI.

Megan also got her very own CC-TDI lab coat.

This is a picture of Megan presenting a check for over $8,000 to Dr. Keller, which is the money she raised from her bake sale and other donations. I think Dr. Keller put it best when he made a remark that no one but Megan could find a way to raise over $7,000 at a bake sale 🙂

After our informational and inspiring day at CC-TDI, we were all exhausted and ready for our Wednesday afternoon flight back to Chicago. For the entire trip hope, our minds were spinning with fundraising ideas and ways that we could further advocate for childhood cancer. Trust me…Megan is far from finished with her mission to make sure no more kids have to experience the nightmare that is childhood cancer.

Megan was excited to get home because her very good friend Katelyn was coming over to spend a couple nights. Megan and Katelyn were very good friends in high school, but when Katelyn went away to college and then her family moved to Missouri, the girls don’t get to see each other as often as they would like. Megan had so much fun have Katelyn around for a couple days.

Kenzi came home from Madison, WI on Friday with two of her college friends to help with the “2nd Annual Team Megan Bugg Golf Outing” which was held on Saturday. Although it was such a hot day, we had an amazing turn-out for the event. We could never thank the Jezik family enough for all of the planning and hard work they dedicate towards this event. Thank you to everyone who came out to golf and to assist with the event. Every penny raised will go directly towards Megan’s CC-TDI fundraiser, so once all the bills are paid, we are anxious to learn how much Megan will be donating toward her childhood cancer research project. Thanks again to everyone who braved the heat!

Here is a picture of Megan with Tim and Renee Jezik. We are so thankful to them.

Things didn’t slow down at all on Sunday as we were excited to hold Kenzi’s official college graduation party. It was a beautiful day and we were so proud to celebrate her accomplishment of graduating with honors from the University of Wisconsin. In the fall Kenzi will continue her education at UW as she pursues her master’s degree in speech pathology. Thanks again to all of the family and friends who came to share in her well-deserved celebration.

It’s been one of the busiest, yet most rewarding weeks I can ever remember. We celebrated with family and friends, and received the most rewarding gift of all…the gift of hope. While we were at CC-TDI, I saw this posted in the lab and it stopped me in my tracks and further reinforced the fact that we have to end this terrible disease.

I came away from this week more convinced than ever that we can end childhood cancer. Together, we have to decide it’s a battle worth fighting.

Until next week…

This Is Her “Why”

With each passing day, Megan seems more determined than ever to put an end to childhood cancer. Of course she would be so thankful if there were finally a cure for Alveolar Rhabdomyosarcoma (ARMS) allowing her to put childhood cancer in the review mirror for good while giving her a chance to get on with her life. However, Megan’s motivation to find a cure no longer seems to reside in her own personal battle, but instead in the battles of so many other childhood cancer warriors from across the country and the world.

There are three primary categories of childhood cancer: cancers of the blood (leukemias); cancer of the immune system (lymphomas); and solid tissues (cancers of the bones, organs or tissues). Like so many other types of cancer, ARMS falls within this final category. The diversity and plethora of childhood cancer types is one of the factors that makes finding a cure so challenging (in addition to the woeful lack of funding for research). Over the past few years of Megan’s Journey, she has connected with childhood cancer fighters of all ages from all over the country and even overseas. Every time she gets to know these brave young warriors, she gets more and more invested in making sure that no child ever has to experience the hell that she and her childhood cancer colleagues of been through. Unfortunately, far too often, she loses her friends to the ravages of childhood cancer, and when that happens, Megan’s determination peaks. It seems like Megan is constantly mourning the loss of her friends and sometimes, it hits really hard…and such was the case this week with the loss of a precious little girl named Indy Llew.

Megan had been following little Indy Llew’s story for quite some time, and she found her to be so courageous and inspirational. Megan was crushed when she learned that Indy had passed away from her long battle. Indy was another in what is sadly a long line of her friends and inspirations who childhood cancer has taken far too soon. Megan left a very touching tribute to Indy Llew on her Facebook page that I have quoted below.

“This sweet innocent girl is now the brightest star in the sky. Not only did Indy have Down syndrome but she also was faced with leukemia multiple times. I’m broken for this family. She leaves behind her beautiful mom and dad and her little sister Birdy. They were best friends but cancer took Indy leaving Birdy without her loving sister. When will this end? My heart shatters a little more each time I see a child get taken from childhood cancer.”

Rest in Peace Indy Llew

How can we continue allowing this to happen to these children? When will our country start to value our children more than 4%? Of the millions and millions of dollars the Federal Government spends on cancer research, only 4% of that is allocated to researching childhood cancers. How about the large pharmaceutical companies? Can’t we somehow get these companies to stop thinking only about their shareholders and instead require them to spend a percentage of their R&D budget on childhood cancer research? In a country as wealthy and advanced as ours, we have childhood cancer patients themselves serving as the primary fundraising mechanism for childhood cancer research? How messed up is that? I could go on and on, but until the adults charged with making these decisions start to step up, Megan is going to keep doing her part to make sure that our country doesn’t lose any more Indy Llews. If our country’s politicians and CEOs cared as much as Megan, we would have solved the childhood cancer puzzle years ago.

Speaking of fundraising, after Megan’s wildly successful bake sale last weekend that raised over $7,000, she quickly shifted gears to the “2nd Annual Team Megan Bugg Golf Outing” that is scheduled for Saturday, June 12. The event will start at the Nettle Creek Country Club with 40 foursomes along with plenty of raffle tickets for gift baskets; pull-tabs for some amazing prizes; and even a silent auction for an incredible 5 day stay at the ultimate Wisconsin Northwoods cabin. As I posted last week, I have stayed at this cabin in the past and it is the most tranquil place I have ever been. The cabin is located on Lake Franklin which is only about a 15 minute drive into Minocqua for amazing shopping and restaurants. The cabin can very comfortably sleep 12 or more, so this would be the perfect getaway for two families. Multiple outdoor decks; only a few steps to the new dock and the clear water of Lake Franklin; great fishing right from the dock; finished basement with four bunks and a full bathroom; 3 other full bathrooms; a master suite that you have to see to believe; and so much more. Check out the prices of cabins like this in the Northwoods and you will see what an amazing opportunity this is. Here are a few pictures.

Megan has also been hard at work putting together gift baskets for the raffle that will be taking place throughout the day. There is truly something for everyone as Megan has a signed Lucas Giolito jersey for the White Sox fans and a White Sox logo recliner. For all those Cubs fans she has a raffle basket that includes an Anthony Rizzo signed baseball and an authentic Rizzo #44 pinstripe jersey.

For all of those baseball fans out there, we are also thrilled to announce that two time World Series champion Scott Spiezio will be out golfing with various groups throughout the day. Just today, Megan was putting the finishing touches on the last of her baskets. As you can see in the pictures, Megan even has baskets for the younger crowd that includes Ivory Ella and Lyrical Lemonade gear. If you are my age, you probably don’t know what either of those are, but trust me…your kids and/or grandkids will love it!!!

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After the round of golf is complete, everyone will be traveling the short distance from the Nettle Creek Course to the Morris Country Club indoor banquet facility at around 4 p.m. for dinner, the raffle, and the silent auction results. If you want to attend the dinner only, you can do so for only $25. Please contact Tim Jezik by Wednesday if you want to attend the dinner and participate in the raffles. We look forward to seeing everyone for what is sure to be an amazing day…and of course…every penny raised will go towards Megan’s childhood cancer research fundraiser through the Children’s Cancer Therapy Development Institute. Come on out and while you have a great time, you will helping a very important cause.

This was a welcome week for Megan as it was week 3 of her 8th round of her current chemotherapy. This off week gives her body a chance to recover from the ravages of chemotherapy, which is so refreshing for her. On Friday, Megan even felt well enough to fill some cupcake orders and do some other baking. Her treatments have been frustrating for her because not knowing how she will feel day to day, she just can’t commit to having cupcake orders filled on a certain date. However, she is still available to fill orders without a deadline. Here she is making some cake balls for a neighbor.

Physically, it’s been a good week for Megan as her body has recovered well from the previous two weeks of chemotherapy treatments. Mentally, the battle is relentless and seems never-ending. Somehow, with each mental hurdle that cancer presents, Megan’s resolve to win grows…and her resolve is much more encompassing than her own personal battle. She is determined to win a much larger battle…a much more important battle…defeating childhood cancer forever. That’s her “why”.

Bake Sale Success

Over the past few years of her personal battle with Stage 4 Alveolar Rhabdomyosarcoma, Megan has become a passionate advocate for childhood cancer awareness and research. When she learned that the large pharmaceutical companies ignore childhood cancer because they don’t see kids like her as profitable, she was very upset. Then she learned that the Federal Government only allocates 4% of their total National Institute of Health budget on childhood cancer research. She also learned that due to a lack of funding for childhood cancer research, she was treated with the same drugs I would have been treated with when I was her age. She learned that the majority of drugs used to treat childhood cancer were actually developed for adult cancers, and testing them to see if they work on children was an afterthought. The more she learned, the more enraged she became, but instead of turning her anger into something negative, she decided to do something positive. She decided that in addition to fighting her own battle, she was going to fight for every single kid who has fought, is fighting, or will fight childhood cancer. Her goal is very simple…end childhood cancer so no more kids have to experience what she has gone through for the past six and a half years. Since the adult decision-makers won’t help these kids, she decided to do it herself. That is the motivation behind her fundraising and advocacy work. It’s why she has fully funded two research projects and is currently working to raise $233,000 for a third research project. To these kids, time is of the essence so they don’t have time to wait on the adults who hold the purse strings to finally decide that kids matter.

Megan knows that everyone has been so generous in supporting her fundraising efforts, and she is so appreciative. Although anyone can make a tax deductible donation to her current fundraising efforts through the Children’s Cancer Therapy Development Institute, Megan knows that she can’t rely on donations alone. Therefore, she has been working on various fundraising events, and her most recent one was a smashing success.

Megan partnered with an incredibly kind person and amazing baker, Jo Ann Burns, to hold a huge bake sale yesterday morning. Jo Ann made so many items that I lost track, and all of them looked incredible. Megan’s former babysitter, Aunt Tammie, got her into making cupcakes and Saturday morning she dropped off dozens of amazing cupcakes for the bake sale. Megan also made eight dozen of her famous cupcakes, and some of Jo Ann’s friends dropped off even more the morning of the event. The owner of La Tavola dropped off some delicious items and there were so many more. When everything was laid out on Saturday morning, I was actually a little concerned thinking about what we would do with the leftover items after the event. There was just so much!!! Here are a few pictures of what we had prior to the start of the event, and this is just from four of the eleven tables that we had filled with items.

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Kenzi also came home for the weekend for the bake sale, which was a huge help. She and Megan made the road signs to help publicize the event. Kenzi is the artist of our family, so we left it to her to accessorize the signs once we got the basics done. Kenzi also ran the checkout line, which was so helpful.

Here is a picture of Megan and Jo Ann prior to the event, as well as a picture of everyone who was working to make it happen.

The bake sale was advertised from 10 a.m.-1 p.m. When we opened our garage doors, there was already a line down our driveway and around the sidewalk.

Once we opened, it was non-stop and to my amazement, in 50 minutes, we were completely sold out. It all happened so fast that we couldn’t believe it!!! I’ve said it before and I will say it again, the generosity of the people in our area is nothing short of incredible. Even the winner of the 50/50 raffle, Suzanne H. donated her winnings back to the cause. When all was said and done, the event raise $7,301 for childhood cancer research!!! Megan is so excited to send this money to Dr. Keller, who is the lead researcher for the Children’s Cancer Therapy Development Institute. As Megan says, due to the limited funds available for childhood cancer research, every dollar counts. Saturday morning’s bake sale counted a lot!!! Thank you so much to Jo Ann Burns and everyone who made this incredible event possible. Needless to say, Megan slept very well that night!!!

Megan’s next fundraising event is the “2nd Annual Team Megan Bugg Golf Outing” which will be held on June 12 at the Nettle Creek Country Club in Morris. This year’s event is shaping up to be bigger and better than last year’s extremely successful outing. All 40 foursomes are filled, and in addition to the golf, we have some incredible raffle prizes this year. We have a Chicago Cubs raffle basket that includes a signed baseball from Anthony Rizzo. We have two Chicago Blackhawks raffle baskets with each containing an authentic Blackhawks jersey. We have a Chicago White Sox package that includes a White Sox recliner and a signed jersey from Lucas Giolito. We also have an incredible 5 day vacation at a lakeside log cabin in the Northwoods of Wisconsin on Lake Franklin, which is only 15 minutes west of Minocqua. This was generously donated by a good friend of our family. I have stayed in this cabin myself and I can tell you from first hand experience that it is the ultimate Northwoods vacation spot. You will stay in a log cabin that easily sleeps 12 people with a master suite that you have to see to believe. You are close to shopping in Minocqua, multiple nature trails, and steps from scenic Lake Franklin, which is a full recreation lake with great fishing. It is definitely the most tranquil and peaceful place I have ever been. Winning this trip would make for a great family vacation, or even a vacation for two families. Here are a few pictures of the cabin. Remember, even if you aren’t signed up for the golf, you can still attend the dinner and participate in the raffles for only $25. Please contact Tim Jezik at 815-679-8149 if you would like to come to the dinner. Also, Megan is still looking for corporate sponsors and donations of raffle baskets. If you are interested, you can direct message Megan on Facebook or contact Tim Jezik at 815-679-8149.

On Friday, Megan had her second chemo treatment of Round #8. Thankfully, she will get this coming week off to let her body recover. Although she has been tolerating her treatments pretty well, the first treatment of this round hit her pretty hard. So far, her second treatment seems to be going better. As always, Megan and our family are so thankful for the support everyone on “Team Megan” continues to provide. Your kindness really makes a difference in her battle as I know she feels your support. I can guarantee that Megan is going to keep fighting and she won’t rest until she not only wins her own battle, but also wins the battle for every other kid fighting this ridiculous disease.

Until next week…