A Long Road Back

Here’s the thing about childhood cancer…just when you think you might be getting the upper hand, cancer comes right back to punch you square in the mouth. Throughout Megan’s 7 year journey with childhood cancer, this has happened to her too many times to count. After 6 relapses, over 140 weeks of chemotherapy, 200 radiation treatments, and now a seventh surgery, Megan is far too familiar with this routine. A lesson we have also learned is that when fighting childhood cancer, it is often not the cancer itself that causes the most damage but instead the treatments for the cancer. When Megan has been hospitalized, it has not been because of damage caused by the cancer, but instead it has been the effects of the archaic treatments our country still uses to treat childhood cancer. Whether it be an ICU stay for sepsis, removal of her gall bladder, hospitalization for low blood counts, infections from those same low blood counts, or her most recent CSF leak, it’s the treatments for childhood cancer that are so cruel. Megan has once again found that out the hard way over the past two weeks.

On Monday, October 11, Megan noticed a clear liquid dripping from her nose and when she laid down she felt it draining down the right side of her throat. It wasn’t long after that she started experiencing debilitating headaches, neck pain and nausea…especially when she sat up or stood up. When we called her oncologist, he wanted her admitted in-patient at CDH immediately for testing. On the ride to the hospital, Megan’s nausea was uncontrollable so when she got there, the nurses were waiting with medications to assist her nausea and pain. After multiple tests, she was diagnosed with a CSF leak accompanied by 3 forms of meningitis (none were contagious). Given the emergent nature of her issues, they transferred her to Northwestern in Chicago at 1:30 a.m. on Saturday morning.

After involvement from the neurology, ENT, and infectious disease departments at Northwestern, the decision was made to airlift her to UPMC in Pittsburgh where they specialize in these types of issues. At about 1:00 p.m. on Sunday, Megan was taken by helicopter from Northwestern to UPMC where Deb had already taken an earlier flight to meet her at the ICU. As soon as Megan took off, I took a flight to UPMC as well (thanks to Makenna Emerson and Ryan Horrie for the ride to the airport).

When we got to UPMC, her pain was immediately taken care of, which was such a blessing. Severe headaches, neck pain and nausea are symptoms of both a CSF leak and meningitis, so the combination really had Megan in severe pain. At this point, being heavily sedated was the best option. The team at UPMC jumped into action quickly as they ran multiple tests and worked to get her body to start reacting to the antibiotics for meningitis. They wanted to see her body start to react positively before jumping into another surgery. As a result, surgery was scheduled for Wednesday morning.

Due to the large doses of radiation Megan had already received in the area at the base of her skull, the scans showed large amounts of “gray tissue”, which means much of the tissue in that area had no blood flow. As a result, to fix this CSF leak, the surgical team would need to harvest tissue from Megan’s scalp that had it’s own blood flow and feed it through her temporal lobe to patch the leak. Her doctors explained to Megan that this would mean a large incision on her scalp, but Megan seemed unfazed and gave her surgeon a fist bump as she prepared for the surgery. At 7:30 a.m. on Wednesday morning they took her to surgery while Deb and I anxiously waited in the surgical waiting room. At about 3:30 p.m., her surgeon came out to see us and said things went well. He wanted to keep her under anesthesia so they could get an MRI, but then she would be up in ICU. It was about 8:00 p.m. before we actually got to see her. Other than looking like she had been in a car accident, she came out of the surgery well. Her vital signs were all stable and pain management was working, so now she started the long road back to recover. Seeing your child come out of surgery with a breathing tube, a feeding tube in her nose, a large incision on her scalp, and so many IV lines was a jolt to my system. As a parent, nothing prepares you for that moment and it took me a minute to collect myself. These are the moments I am so glad her mother is here, because she is so much stronger than me during the tough times.

Megan currently has a feeding tube through her nose to make sure her body is getting enough protein to aide recovery at the surgical site. She also has a large horseshoe shaped incision on her head where they harvested the tissue. Megan hasn’t seen her incision yet, but I am confident that given her past history, she will wear it as a badge of honor. Yesterday, they started to remove a couple of the many IV lines she has, but since she is still receiving six different antibiotics for meningitis, she still has a lot of lines coming into her body. The infectious disease doctors are encouraged because Megan’s white count is way down which shows that her body is responding to the antibiotics. As most people know, meningitis is a very dangerous form of infection…especially the fungal meningitis, which is one of the three forms of the infection Megan has, so the fact that she is responding to treatment is huge. As her surgeon said, he is much more concerned about her meningitis that he was fixing the CSF leak.

Other than spiking some high fevers at night and some recurring bouts with nausea, Megan is making slow and steady progress. She is communicating better now and although she remains in a prone position, she is becoming more active. She told her nurse today that she wants PT to come because she wants to get out of bed. As usual, everyone is amazed at Megan’s pain tolerance, her determination to get better, and of course her kind heart. When her neurosurgeon came to see her on Friday morning, he gave her a quick check while she was pretty much out of it. When he finished, he asked her if she had any questions and she softly said, “Thank you.” It melted my heart.

On Tuesday, Kenzi and Makenna Emerson made the 8 hour drive here to come and be with Megan and to bring us our car. It was so kind of Makenna to ride with Kenzi, because this situation has been very hard on her. People forget how hard the childhood cancer battle is for siblings. Sometimes I think they are the forgotten victims in the childhood cancer journey. I was comforted knowing Makenna would be with Kenzi for company and emotional support during that long drive. It was so good to have them both here as they were a welcome diversion for Megan, as well as Deb and I. Kenzi was by Megan’s bedside the night prior to her going to surgery, which I know made Megan feel better.

After surgery, Kenzi brought Megan a little University of Pittsburgh stuffed animal, which was the first time we saw Megan smile post-surgery.

It seemed Megan was at her happiest when Kenzi and Makenna were around.

At this point, we don’t know how long Megan will be in the hospital. We also know that once she is released, she will need to stay in Pittsburgh for a period of time as she will need daily antibiotic infusions to treat meningitis. We also know that given her past history, her neurosurgeon and ENT will want her to stay in Pittsburgh for a period of time for close monitoring. There are so many unknowns for our family right now that include not knowing how long we will be here; finding housing that will accommodate Megan’s needs; getting Kenzi back to school in Madison so she doesn’t fall behind; our work responsibilities; and keeping the house up in Coal City (which has made made so much easier by our awesome neighbors and Jack Micetich). However, we know that all of these issues will work themselves out, because the primary focus is getting Megan better again and back to the comforts of home and her beloved pets.

I have spoken many times of Megan’s drive and determination, but I have never seen those traits on display as strongly as I have the past two weeks. Even though Megan was sedated due to extreme pain, she was fully cognizant of what she was in for with yet another endonasal surgery, because she has been there, done that. She knew she would come out of surgery in even more pain. She knew she was going to have a large incision on her head. She knew that she was going to be in for another long stay in the hospital. And she knew that it would be a long time before she could come home again. Yet through all that, there was never a doubt in her mind about going through with this surgery. There was never a thought of waving the white towel and saying enough is enough. Over the past seven years she has been through more than a lifetime of mental and physical pain and suffering, but she just refuses to quit. Stage 4 alveolar rhabdomyosarcoma couldn’t stop her. Sepsis couldn’t stop her. Six relapses couldn’t stop her. The brutal side effects of 140+ weeks of chemotherapy and 200 radiation treatments couldn’t stop her. Seven surgeries couldn’t stop her. And now a CSF leak and meningitis can’t break her will. I am more convinced than ever that if anyone can beat this vicious disease, it’s Megan.

Thank you so much to everyone who has reached out to our family offering assistance and support. Also, thank you to everyone on Team Megan for your kind thoughts and prayers for her during this trying time. I know she feels your support. Finally, thank you to everyone who has reached out to Megan directly via text and social media. She has been unable to respond yet as she is not strong enough to use her phone, but please know she will get back with you as soon as she is able. It is times like this that our family is so thankful for family, friends, and the kindness of so many of you. It is these moments that reinforce my faith in the inherent good of humanity. We are blessed.

Until next week…and let’s hope we soon get back to seeing Megan like this.

Back to Pittsburgh

So Megan has a lot going on right now, which has resulted in the past six days becoming a blur. To be honest, I woke up this morning thinking it was Monday, so I have lost all track of time. Although Megan has been dealing with headaches and neck pain since her August 5 endonasal surgery to remove the tumor at the base of her brain, that pain has been manageable with mild pain meds. In fact, for the previous two weeks things had started to improve to the point where she was finally able to tolerate a few short outings. However, this past Tuesday things changed very quickly and it’s been a whirlwind of activity for her ever since.

On Tuesday, Megan started to notice a significant amount of fluid coming from her nose whenever she sat up, and if she laid down she could feel it draining down the right side of her throat. She also noticed that the liquid was clear and not like normal nasal discharge. Soon after that, she experienced severe headaches and her neck pain worsened, which was followed by nausea that was difficult to control. We called her oncologist who told us to bring her to Central DuPage Hospital in-patient for fluids, pain management and some diagnostic testing. When I woke her to let her know she had to go to the hospital, she tried to get up, but as soon as she lifted her head the pain was excruciating. I thought for a moment I would have to get her to the hospital by ambulance, but Megan was determined that I was going to drive her there. On the way to CDH, she threw up four times in the car and she said every bump in the road felt like a bolt of lightening in her head and neck. Fortunately, as usual, when we arrived at CDH her doctors and nurses had everything ready to go and she was able to get some pain relief.

Dr. Hayani was immediately concerned and called in a variety of doctors to consult on her case. After multiple x-rays, CT Scans, blood cultures and a spinal tap, it was determined that Megan had a cerebrospinal fluid (CSF) leak, which also caused her to contract staph meningitis. Both of these issues cause similar symptoms of severe headache, nausea and neck pain, so added together, her doctors said Megan was really experiencing severe pain. Most likely this leak was caused by the weakening of the surgical region in her nasal/sinus cavity, and the only solution would be another surgery.

At 2:00 a.m. on Saturday morning, Megan was transferred by ambulance from CDH to Northwestern Hospital in downtown Chicago. After a few hours on the transition floor, the neuro team here decided to move her to ICU for closer monitoring. A CT scan of her head taken Saturday morning showed a severe build-up of air in her skull, which could become very dangerous if not addressed quickly. Our hope was that Megan could get her surgical procedure done here at Northwestern, but the neurology team here believed the best and safest option was to have her transferred back to UPMC Presbyterian Hospital in Pittsburgh where they specialize in this type of surgery. Also, the original surgeon from Megan’s August 5 surgery is there and everyone involved thought it would be best for him to conduct this surgery since he is most familiar with her nasal anatomy.

As a result of all this, Megan is being airlifted this morning by helicopter from Northwestern Hospital to UPMC in Pittsburgh. Deb hopped a plan very early this morning so she could be meet Megan at the hospital when she arrives. Unfortunately, I am not able to fly with Megan to Pittsburgh due to weight limits and protocols, so as soon as she leaves, I will be driving to the hospital and hopefully arriving before Megan goes into surgery. At this point, we do not know for sure if her surgery will be today or tomorrow, but I know they want to get to it quickly.

It’s been a very long week for Megan with lots of low spots, but also a few bright spots sprinkled in. Makenna Emerson graciously stopped by to visit Megan three different times at CDH, which I know Megan really appreciated. Kenzi also drove from Madison, WI yesterday morning to be with her sister in the ICU here at Northwestern. That was the happiest I had seen Megan in 6 days, because during the times when her pain management was under control, she and Kenzi laughed, ate the Crumbl cookies Kenzi brought, drank Starbucks, and even had an in-room manicure session.

Megan is adamant that I don’t post any pictures of her struggling while in the hospital, and of course I am going to respect her wishes as this is a story that belongs to her. However, trust me when I tell you that I wouldn’t wish the past six days on any parent. Cancer is an evil beast with a grasp that is so incredibly strong. It comes at you in so many different ways both physically and mentally. If it can’t beat you with the disease, it looks to beat you with the resulting treatments. If it can’t beat you with the treatments, it looks to take away your spirit and your will to fight back. This has been a hard week and it won’t get any easier as Megan prepares to go by helicopter to Pittsburgh, go through yet another invasive endonasal surgery to stop the CSF leak, and then most likely spend the next 10 days in Pittsburgh recovering.

As I’ve alluded to before via this blog, Megan’s Journey always serves as a vivid reminder of what is really important in life. Her perspective on life has changed my perspective on life, and I am a much better person for it. We would all be wise to follow the advise of Robert Fulghum who reminds us…

β€œOne of life’s best coping mechanisms is to know the difference between an inconvenience and a problem. If you break your neck, if you have nothing to eat, if your house is on fire – then you’ve got a problem. Everything else is an inconvenience. Life is inconvenient. Life is lumpy. A lump in the oatmeal, a lump in the throat and a lump in the breast are not the same kind of lump. One needs to learn the difference.”

Struggling Towards Her Goal

Megan has been battling so hard every single day to try and recover from her 6th relapse and the resulting surgery to try and remove the stubborn tumor that has been at the base of her skull. Given her body’s weakened state going into surgery, it has taken a long time for her to start feeling better. In addition, since her surgery she has still been on a chemotherapy regiment which doesn’t help her recovery at all. Thankfully, her current chemo of Pazopanib seems to be going a little easier on her than her previous combination of Irinotecan and Temozolomide. Pazobanib is a daily oral chemo and although Megan believes it is making her very tired and causing some headache issues, the side effects don’t seem to be near as debilitating as her previous chemo combination. Megan is still struggling with her right eye and her neck pain on her right side is still causing her significant pain when she is upright, but overall, she is much better than she was even two weeks ago. Activity is still limited to short outings, but at least she has been able to go out for lunch with friends, go with someone for a trip to Starbucks, and watch some Coaler volleyball. When she gets home from any outing, she still heads right to the couch to take the pressure off her neck and maybe even take a nap with Boo Boo Kitty.

Megan has been very frustrated since her surgery because she essentially missed Childhood Cancer Awareness Month in September. Normally Megan is out at multiple events to speak about the importance of childhood cancer funding, but this September she just didn’t have the energy. However, that didn’t stop her from doing what she could and convincing others to get onboard for the cause. So many people stepped up during September and it is continuing into early October. There are so many people to thank for helping Megan raise money towards her goal of $233,000 for a childhood cancer research project being conducted at the Children’s Cancer Therapy Development Institute (CC-TDI). On her fundraising page, it states that she has currently raised $194,602 for this project, but with the other fundraisers coming in, she is getting very close to realizing her goal of fully funding this important research project that has the chance to change so many young lives. The “Crush Childhood Cancer 5k” was a huge success, and although the final tally is not yet in, Megan believes that it will be a huge help in getting her to her goal. Also, there are so many others who have been conducting fundraisers on Megan’s behalf, and I want to take a moment to recognize some of them. I apologize if I miss anyone, but know that Megan appreciates the efforts of everyone who has been raising money for childhood cancer research.

  • Coal City High School Volleyball
  • Seneca High School Volleyball
  • Wilmington High School Volleyball
  • Reed-Custer High School Volleyball
  • Lion’s Club of Marseilles
  • Gigi’s in Morris, IL
  • Whistle Stop Restaurant in Diamond, IL
  • Nelly’s on Rt. 66 in Wilmington

Currently, the Federal Government only allocates less than 4% of all funding for cancer research towards researching treatments for childhood cancer. Further, the pharmaceutical companies won’t touch childhood cancer research because they don’t see it as a profitable venture for their shareholders. As a result, childhood cancer fighters like Megan and so many others across the country are forced to raise money to fund the research that could save their lives. There is no way our lawmakers would ever accept people with other life-threatening ailments being forced to raise money for their own potential treatments, but yet they have no problem allowing our children to do just that. In the meantime, almost 2,000 kids will pass away this year from childhood cancer, and every single day 45 more parents will learn the devastating news that their child has cancer. It has to stop! One of these days the adults who make the funding decisions will get their priorities in order, but until then, young people like Megan will keep taking matters into their own hands. The trivial things our lawmakers in Washington, D.C. argue about while paying zero attention to 2,000 kids dying each year boggles my mind. These kids deserve so much better.

Although Megan’s stamina has been pretty low lately, she still wanted to travel to Bloomington, IL on Saturday to attend Uncle Todd and Gina’s wedding. It was a small family ceremony at a beautiful setting in Funks Grove Church with a reception of family and friends to follow. We were all so excited to see Uncle Todd and Aunt Gina so happy together. We were also thrilled that Kenzi made the long drive down from Madison, WI to attend the event and spend some time with us. Kenzi’s boyfriend Nick is going to school at ISU so he met us as well. We all met at Starbucks about an hour before the wedding to catch up for a bit, which was really nice. After the wedding and reception, Megan’s neck was on fire and she was really exhausted, so when we got home Megan went right up to her bedroom for a three hour nap. Here are a few pictures of our family from the grounds of Funks Grove Church.

On Thursday, Megan went to her oncologist and to an appointment with her new neurologist. The neurology appointment was to try and better manage her headaches, which hopefully is being accomplished with some new levels of medications. At her oncology appointment, her doctor talked with her about a potential clinical trial that Megan might qualify for that is showing some promising results. Although there is still some research to do, Megan was intrigued by the possibilities and it is something she and her medical team will continue to investigate. In the meantime, Megan is going to keep trudging forward towards her goal of finally defeating this evil beast once and for all. From the outside looking in, it’s hard to understand the daily struggles that she faces, yet somehow, she manages to smile every day and keep her eyes on the ultimate prize. Until next week…

Never Backing Down

Since her 12 hour endonasal surgery on August 5th to remove a tumor at the base of her skull, Megan has been fighting an uphill battle to recover. Going into the surgery, her body was already so beat down from over 130 weeks of chemotherapy, so we knew that recovery would be difficult. However, I don’t think any of us were prepared for the reality of how hard it would be for her body to fully heal from such a long and invasive surgery. Add to that the fact that Megan had to start chemotherapy again and that she is still very concerned about losing lateral control of her right eye, the past two months have been really difficult. As a father, there were times when I actually wondered if putting her through this surgery was really worth it, but I also knew that even if I wanted to, there was no deterring her from going through with it. Throughout Megan’s Journey, she has been willing to do whatever it takes to finally defeat cancer…even if it meant putting her through mental and physical anguish. As difficult as the last two months were, Megan never lost sight of her ultimate goal, which is to beat cancer. Even though she was on constant pain meds, couldn’t ride in the car without throwing up, didn’t have the energy to even get out of bed, and very little quality of life, she never backed down. So it has been a tremendous relief to finally see her determination paying off as for the first time since surgery, it seems like we have our daughter back. It’s hard to beat someone who refuses to quit.

Although Megan is still having issues with her right eye and continues to deal with some neck pain, the rest of her body seems to be getting stronger by the day. She is now off all of her narcotic pain meds and is getting by with just Napraxon and a muscle relaxer for her neck. Her nausea is gone as she is even asking to go in the car to Starbucks or like today, to get Halloween decorations for our front porch. Just a week ago, any car ride resulted in debilitating headaches and uncontrollable nausea. She is sleeping through the night without any assistance from medications and when she wakes up, we finally get to see that infectious smile again. Don’t get me wrong, she is still dealing with a variety of ailments, but to see her functioning again is such a relief. She has fought so hard to get to this point, so we are enjoying every second of it.

On Monday, Megan went to her ophthalmologist because her right eye keeps getting worse. Although we don’t know for sure if it is caused by a recurrence of her tumor or something related to post-surgery, it is still concerning for Megan. What makes her eye issue even more difficult for her is that she can see the deterioration every day. Although her doctor was able to strengthen her prism to straighten out her double vision, the strong lens tends to give her a headache. Instead, she spends most of the day with a frosted lens over her right eye that her local eye doctor had made for her. We are hopeful that the combination of time and her new chemotherapy drug will start to help her eye improve. Otherwise, we will have to wait until her next MRI to see for sure what is going on.

Speaking of chemotherapy, Megan has switched from her previous chemo combination of Irinotecan and Temisolomide to a new daily oral chemo called Pazopanib. This new chemo drug seems to be much easier on her body as the previous combination was just too much for her to handle with her body in such a fragile state. She has been on her new chemo drug since Tuesday and we are hopeful that a part of her feeling so much better means this new drug is doing its job. Megan has now been through 141 weeks of chemotherapy and counting, so she pretty much knows what to expect in terms of side effects. So far, she has been pleasantly surprised how her body is handling Pazopanib.

Before Megan’s 5th and 6th relapse, she was working as a receptionist at Broadway Dance Center in town. It was a job she loved because it got her out of the house and she really enjoyed the company of Miss Kim, the instructors and all of the dancers. Unfortunately, her health has made it too difficult to work and she has really missed it. One of Megan’s favorite events of the year was going to the Morris Corn Festival to watch the dancers perform on Liberty Street. She planned to go last Sunday, but just wasn’t feeling well enough to make it. On Monday, Miss Kim contacted Megan and asked her to stop by the studio that night. Megan wasn’t sure she could make it, but decided to go ahead and give it a try. When she got there, Miss Kim along with the Jr. and Sr. dance companies surprised Megan by putting on their entire Corn Festival performance for Megan. The dancers were even in full costume! It was such a kind thing for all of the dancers to do for her, and Megan loved it. Although she went right to bed when she got home, she went to sleep on cloud nine.

Last Tuesday the Coaler Volleyball program held their annual Megan Bugg Childhood Cancer night. When Megan was first diagnosed with cancer, she was in the middle of her 8th grade volleyball season. Since her diagnosis, Coach McMurtrey (varsity volleyball coach) has been a constant source of support to Megan. Ever since Megan’s diagnosis, she has dedicated the program’s Volley for a Cure event to Megan’s fundraising efforts for childhood cancer research. Unfortunately, Megan wasn’t feeling well enough to attend, but she did provide a written statement to be read at the event. I know how much Megan appreciates the continued support of Coach McMurtrey and the entire Coaler volleyball program.

As this past week went on, Megan started feeling better and better. She even got to the point where she wanted to come to my office for a retirement party for one of the secretaries who has worked for our school district for many years. Celeste Sheridan has always been such an amazing supporter of Megan, and through both of their theater experiences, they have become close. Megan was so excited to wish Celeste a very happy and well deserved retirement. We will definitely miss her, but I know she and Megan will stay in touch.

I was really excited on Friday because after work I drove to the University of Wisconsin to spend some time with Kenzi. I got us volleyball tickets for Friday night and football tickets for Saturday afternoon. The volleyball game was fantastic as the Badgers took care of a very good Minnesota team in 3 games, but football against Michigan was another story. However, we still had a blast together. It was so good to see her continuing to thrive as a graduate students at UW.

When I got home from Wisconsin on Saturday evening, Megan greeted me with her amazing smile and said she had been feeling really good. On Sunday morning, she wanted to take a trip to Starbucks and she chatted the entire way there. It was just like old times. We watched the Badger volleyball team play Illinois at noon and after that she wanted to go get some Halloween decorations for the front porch. The combination of the fall weather and Halloween makes October Megan’s favorite month of the year. Everything you see in the picture was picked out and staged by Megan.

Throughout Megan’s seven year journey fighting childhood cancer, she has connected with other brave warriors from all of the country and the world. These childhood cancer fighters have become so important to Megan, because they can speak the same language. They truly understand what one another is going through and as a result, they become such a vital system of support. Sadly, the ravages of childhood cancer have taken far too many of Megan’s friends far too soon. This week was no exception as Megan was devastated to learn of the passing of her friend Elizabeth. Megan first met Elizabeth at Curefest in Washington, D.C. and they have stayed in touch ever since. Elizabeth was such a courageous person as she fought against Neuroblastoma so hard. She inspired so many people and it is sad that we lost her far too soon. Megan was devastated. I long for the day when our country will realize that losing 1,800 kids per year to childhood cancer is unacceptable. Until then, fighters like Megan, Elizabeth and so many more will continue doing their part to raise awareness and funding to stop this vicious disease. These kids deserve so much better.

Throughout life everyone has to face adversity, and unfortunately, Megan has been forced to face far more hardship than most other 20 year olds. When adversity hits, we all have a choice to make. Do you use the adversity as an excuse to give up, or do you decide to never back down? It’s obvious which path Megan has chosen. Until next week…

The Best Medicine

Childhood cancer is relentless. It’s like fighting through the waves on the shores of the ocean. You know that feeling when a wave knocks you off balance and as soon as you regain your balance, here comes another wave to smack you yet again? That’s childhood cancer. As long as you remain in the water, you know that next wave is coming and no matter how hard you brace yourself, it still knocks you off your feet. The difference with childhood cancer is, Megan has no choice but to keep standing in the water and bracing for the next wave to hit. The only way out of the water is for her to beat childhood cancer once and for all, so no matter how many times she gets hit, she just keeps staggering to her feet for more. Her physical toughness has been amazing, but it’s her mental fortitude that I cannot even begin to comprehend. Somehow she just keep standing in the water and bracing yet again for the next wave to hit. In fact, Megan not only is taking the force of the wave hitting her, but she has willingly tried to take on the waves hitting so many other brave childhood cancer warriors from across the country. Megan has taught me that real toughness has absolutely nothing to do with size and physical strength. Instead, genuine toughness can only be measured by what is inside of a person, and what’s inside of someone always shows during times of challenge and adversity. I admire her so much.

Currently, the wave hitting Megan feels like a tidal wave. Not since the extreme effects of her first 54 week chemotherapy protocol have I seen Megan struggle so much with physical and mental pain. Recovering from her tumor resection surgery coupled with her current chemotherapy treatment has had a profound impact on her. This past Monday, Megan headed back to CDH to start her five straight days of Irinotecan infusions. Ever since her surgery, she has been struggling with motion sickness, so most every trip to the CDH clinic results in her throwing up in the car. It has also been difficult to find a pain management protocol that balances all of the other issues she has which include severe neck pain, migraine headaches, and GI issues among others. After three straight days of treatment, Thursday morning was really hard for Megan. She woke up feeling miserable, and both Deb and I wanted to call her oncologist and cancel her treatment for the day, but Megan wouldn’t hear of it. As usual, nausea hit her on the way to treatment and her neck pain on the ride there made the trip very difficult. Once she was there and met with her oncologist, they decided to place her in-patient for fluids and to get a better handle on pain management. Obviously, Megan was disappointed because she hates staying in the hospital, but after some convincing, she realized it was the right thing to do.

While in the hospital, they gave Megan some strong pain medication that allowed her to finally settle in for a good sleep. She ended up sleeping for about 13 hours and woke up feeling much better. She also met with her oncologist and a neurologist to talk about a pain management plan that would balance pain mitigation without exacerbating all of Megan’s other physical issues (all of which have been caused by the effects of chemotherapy). Her oncologist also decided to cancel her Friday treatment of Irinotecan because her body was just too weak to handle such a toxic drug at this time. Instead, they switched her to an oral chemotherapy that they hope will be easier on her. Megan told her doctors that she was definitely going home that afternoon because she wanted to be there when her sister came home from graduate school for the weekend. Thankfully, the combination of fluids and a change in pain meds seemed to work pretty well as by Friday afternoon Megan said she was ready to head home. Although Megan loved seeing all of her old nurses on the pediatric floor during her stay, she was so anxious to get back home.

There have been so many times during Megan’s seven year journey when the medicine prescribed by her doctors was just not enough to break the cycle of physical and emotional pain. It is during those times that there is an even stronger medicine, which is the love and support of family and friends. Megan was so excited to get home because Kenzi came home again from Madison, WI this weekend to see her little sister, and to make the visit even better, Kenzi brought her best friend from college, Ellyn, with her. Megan loves Ellyn as they both have so many common interests. Kenzi’s boyfriend Nick also stopped by for a visit. Finally, Makenna Emerson also came home from Chicago to see both Megan and Kenzie, so there was a lot of action at our house this weekend. Although Megan was pretty tired, she still managed to hang out with everyone; drink coffee; watch movies; watch football and volleyball games on tv; and most importantly, find a reason to laugh, smile and have fun. It was such an amazing weekend…and it was exactly what the doctor ordered.

In fact, the girls had so much fun that they needed a Saturday afternoon nap to make it through the evening πŸ˜‰

And of course, the pets love it when both girls are home πŸ™‚

Through all of Megan’s own personal challenges, she somehow remains focused on her much bigger fight…which is her mission to end childhood cancer. Last weekend was the “Crush Childhood Cancer 5k” and we had a tremendous turnout. Since the race, we have had some people ask about getting an official race day shirt.

In response to this demand, we have kept the virtual registration link open for the “Crush Childhood Cancer5k” until the end of this month. If you register for the virtual option, you not only get this awesome race shirt, but you will be supporting Megan’s fundraising efforts for childhood cancer research being conducted at the Children’s Cancer Therapy Development Institute . Use this link if you want to register.

https://runsignup.com/Race/IL/CoalCity/CrushChildhoodCancer

Through Megan’s partnership with CC-TDI, Megan got connected with an amazing young athlete named Josh Kaindoh. Josh is a rookie defensive end for the Kansas City Chiefs. Through CC-TDI Josh heard about Megan’s efforts to raise money for childhood cancer research and he wanted to help. Along with CC-TDI, he and Megan have been talking about ideas for raising awareness and funds for childhood cancer. Josh actually invited Megan out to the Chiefs game today, but obviously she just wasn’t feeling up to traveling, so instead, he and some friends from CC-TDI Facetimed Megan before the game. Megan was so pleased that Josh took the time to check in with her today. I have a feeling these two could be a powerful duo in the fight to end childhood cancer. Here is a picture of Megan and Kenzi talking to Josh via Facetime and a picture of everyone at the game. You can’t make it out in the picture from the stadium, but Megan is on the phone being held up in front of Josh.

Thankfully, the combination of new medications seems to be working pretty well as Megan’s pain seems more manageable this weekend. However, it took more than new medications to withstand this tidal wave of physical and mental anguish. Megan is the strongest person I know, but sometimes even the strongest need the love and support of family and friends. That really is the best medicine of all.

Crushing Childhood Cancer

The “Crush Childhood Cancer 5k” was held on Saturday night in downtown Coal City and thanks to the generosity of so many people, the event was a huge success. Megan has been an avid fundraiser for childhood cancer research for the past five years and during that time she has raised over $560,000 with every penny going towards promising research projects aimed at providing less toxic treatments for childhood sarcomas. In previous posts during Childhood Cancer Awareness Month, I have explained how frustrated Megan is that she hasn’t been feeling well enough to undertake her usual advocacy and fundraising efforts. This month is so important to her as raising awareness for childhood cancer has become her passion. As usual, when Megan has needed her “Team Megan” members the most, they have stepped up in a big way.

Before her most recent (6th) relapse, Megan had been wanting to organize a 5k event to raise money for her current fundraising effort through the Children’s Cancer Therapy Development Institute. Megan is working to raise $233,000 to fully fund her second project through CC-TDI. She has currently raised $145,000 and set a goal to raise the remainder of the funds prior to the end of September. As Megan knows all too well, kids fighting cancer don’t have the luxury to time, so patience is not in Megan’s vocabulary when it comes to raising money for research. When Megan relapsed and then went through a grueling 12 hour surgery to remove a tumor from the base of her skull, she was worried that her 5k plans would never come to fruition. However, as they have done so many times for her in the past, people stepped up to make the “Crush Childhood Cancer 5k” a reality…and what a success it was!!!

When Megan was planning this 5k race, she was adamant that her name not be in the title because she didn’t want this race to be about her. Instead, she wanted everyone to know that this race was being run for every single kid…past, present and future who has fought, is fighting, or will fight childhood cancer. Therefore, she came up with the name “Crush Childhood Cancer 5k”. She then contacted Jack Micetich who worked his magic on a draft logo and after talking with Megan about a few revisions, landed on the awesome logo that was used on the race shirts.

The two most important heroes who came to her rescue were Shawn Hamilton and Chris Shirkey who served as the race co-directors. They handled every detail of the event so Megan didn’t have to worry about a thing. I don’t know how our family could ever thank them for their tireless efforts in pulling off this event.

Chris Shirkey, Shawn Hamilton and Jim Meyer helping me get people registered.

There are also so many others to thank and I apologize in advance if I forget anyone, but here goes.

Thank you to Don Phillips (The Voice of the Coalers) for emceeing the event and donated a signed Coaler football jersey for a raffle.

Thank you to the Perino family for allowing us to use Babe’s Tap patio as our race headquarters and for providing post-race refreshments.

Thank you to Kim Scerine and the Broadway Dancers for working at the turnaround to provide water and entertainment. Here is a picture of them holding a Team Megan sign at the turnaround.

Thank you to the Village of Coal City and the Coal City Police Department for closing down Broadway for the race.

Thank you to the Morris Community YMCA for sponsoring the Kids Fun Run prior to the race.

Thank you to Rodney Monbrum for his assistance on race day and for his fundraising efforts to help the cause.

And of course, thank to to the 309 people who signed up for the race and the 100 people who signed up for the virtual event. Without you, this event would not have been the rousing success that it was.

Thankfully, Megan felt well enough to come out to the event and I know how much she appreciated everyone’s support for childhood cancer. It means so much to her. This community continues to provide such tremendous support to Megan and our family, and we are forever in their debt. This is such a special place to raise a family.

I could go on and on talking about the race, but the best way to fit everything in is just to share some pictures.

Megan was excited that Kenzi was able to come home from school for the weekend.
It was exciting to have so many family members share in this exciting evening. Aunt Janet flew in from the east coast and she brought Grandpa and Grandma Coope to watch. Aunt Janet ran the race and did fantastic. Grandpa and Grandma Bugg came out as well.

I was so proud of my 82 year old dad who came out to participate in the event. He ran the entire 3.1 miles and finished in 42 minutes. He’s amazing!!!

Megan and Kenzi were so happy that Makenna came home from Chicago for the weekend. Makenna actually ran the entire race with Grandpa Bugg. She’s the best!!!
Megan was so excited when little Averie and her family came to support her event. Megan met Averie at the CDH Clinic when she was fighting cancer. Their family is so special to Megan.
Even Kenzi’s high school friends Kenady and Cali showed up to lend their support.

Saturday night was a testament to what can happen when a community pulls together for a common cause…they can move mountains. Although we don’t have a monetary total yet, I know it is going to be an impressive donation Megan sends to CC-TDI to support childhood cancer research.

Speaking of generous donations, Megan was so excited to finally get to meet Braeden. This incredible young man held a lemonade stand to help raise money for Megan’s fundraising efforts. However, Braeden doesn’t hold your ordinary kids lemonade stand. Through his advocacy efforts, he raised over $1,000 for childhood cancer!!! Can you believe that? Megan has been wanting to get together with Braeden, but she just hasn’t felt well enough. However, on Friday afternoon they were finally able to meet so Braeden could hand deliver his incredible donation. Megan was so pleased to thank him in person. Thanks Braeden!!!

Megan starts her next chemotherapy treatment on Monday. After considering multiple options, her medical team and Megan decided to continue with a combination of Irinotecan and Temozolomide. Megan will head up to the CDH clinic for five straight days to get her infusion of Irinotecan. Although she is still recovering from her surgery, she knows that her treatment cannot wait any longer. When it comes to childhood cancer, you can’t wait until your body feels up to treatment. You have to keep trudging forward…and after 135 weeks of chemotherapy, Megan knows that as well as anyone. Let’s hope the side effects remain manageable to the point that her body can continue to recover.

Thank you again to everyone who continues to support Megan and childhood cancer. So many kids are counting on us to make a difference in their lives and provide the one thing they want more than anything…HOPE.

Until next week…

“I’m Really Sad, Scared and Discouraged”

Childhood cancer is a journey of extremes. There is the initial shock when you first learn that your child will be fighting the most vicious of childhood diseases. For us, there was the euphoria when we learned that after seven weeks of intense chemotherapy, Megan’s tumors had disappeared. There is anger and disappointment when you learn that your child has relapsed for the first time. Then there is the excitement and guarded relief that comes with a clean scan after 36 more weeks of chemotherapy. Then you learn that your child has relapsed again…and this exhausting emotional roller coaster goes on and on and on. For Megan, she has ridden this roller coaster six times now…and we fully recognize how fortunate we are, because Megan continues to defy the odds. Many parents would give anything to have their child with them for a sixth relapse, but the fact that Megan has defied all of the odds doesn’t make her journey any easier.

In my eyes, Megan’s inner strength and determination is the stuff of legends. As she has battled this beast over and over again, I have no doubt that most…myself included…would have waved the white flag of surrender long ago. But not Megan. Not only has her determination and belief in herself never wavered, but in the midst of such a formidable battle, she has willingly taken on the battle for other kids all over the country. Her story has served as their motivation and given them hope that they too can defeat this monster. She provides them moral support and talks to them about the importance of staying positive and believing in themselves. She has served as an example of how we all should be living life by treasuring every single day and making it your life’s mission to make a positive difference in this world. She has decided that her purpose was to fight tirelessly for all kids past, present and future who have, are, or will fight childhood cancer. She is appalled and angry about the lack of attention that childhood cancer receives from the Federal government and from the pharmaceutical companies. She has met with government officials and used her social media platforms to advocate for the cause. She has marched in Washington, D.C. and spoken with the U.S. Capitol building as her backdrop. Most importantly, she has now raised over $560,000 with every single penny going directly to research projects aimed at providing more effective and less toxic treatments for childhood cancer. Her current project through the Children’s Cancer Therapy Development Institute needs $233,000 to be fully funded, but the $137,000 she has already raised has allowed the project to start, because everyone at CC-TDI knows that when Megan says she will raise the full amount, it will happen. Megan has fought so hard for so long, and I know that her efforts have not been in vain. She and so many other kids like her are making a difference, but we still have so far to go. Megan is still motivated, but she is tired, and she needs help.

On Thursday, Megan had an MRI of her head and neck. Originally, her post surgery MRI was scheduled for September 30, but based on some concerning symptoms her medical team moved her MRI up to the earliest possible date. Thanks to the magic of Nurse Jennie and the CDH clinic, Megan got in only two days after the request was made. A week ago Thursday, Megan had an appointment with her ophthalmologist because post-surgery, the double vision in her right eye had significantly improved. At this appointment, it was verified that the lateral movement of her right eye had improved from 50% pre-surgery to 80% post-surgery. Megan was very pleased, but only two days later she started complaining that her vision was getting worse. A couple days later it became apparent that something was once again impacting the lateral movement of her right eye causing her double vision to worsen very quickly. When we talked to her surgeon in Pittsburgh, he said that he wanted an immediate MRI because there was still a chance this could be caused by post-surgery issues (swelling), but he needed to be sure there wasn’t new tumor growth. Obviously, Megan was justifiably scared as we made the trip to CDH for her MRI under anesthesia.

The results of her MRI came pretty quickly and showed some areas of concern. Once again, it is too early to definitively say there is new tumor growth as post-surgery swelling is still a possibility, but as her surgeon said, the spots at the base of her skull are concerning. Of course, Megan was absolutely devastated. She had just taken a big risk by going through a huge 12 hour surgery to have the tumor removed, and if it were growing back after only a month, that was a tough pill to swallow. We will meet with her oncologist early this week to determine the next steps, which this time could include immunotherapy. However, it should come as no surprise that this has proven to be a very tough weekend for Megan…both physically and mentally.

On Saturday, Megan went back to her ophthalmologist who confirmed that her double vision had gotten much worse. While she was at that appointment with her mother, Megan was texting me about how tough this was for her. One series of texts hit me hard when she said, “I’m really sad, and scared, and discouraged.” I don’t blame her one bit for feeling that way, and although we continue to remain optimistic, make no mistake…this is so hard.

Usually when Megan is feeling so anxious and scared, we find things to keep her mind busy like heading to Naperville to shop, taking a weekend trip, going to her favorite restaurant, or just going to the I&M canal for a walk in nature. The struggle right now is that Megan isn’t physically strong enough to do those things, so she is pretty much homebound, which gives her mind too much time to wander. Fortunately, she still had her menagerie of pets nearby to help ease her mind.

For the first time in over a month, Megan had the energy to bake some cupcakes. All of the sudden she asked for help in getting stuff out because she found a strawberry-almond cupcake recipe she wanted to try. Of course, they were so good!

The “Crush Childhood Cancer 5k” run/walk is coming up on Saturday, September 18 in downtown Coal City. At Friday night’s football game between Coal City and Wilmington, we held a special registration promotion where we gave away a free Ivory Ella shirt from Megan’s childhood cancer collection for anyone who registered that night. Megan called me after the Freshmen game and said she wanted to try to come over to the registration table for a bit. I quickly went home to get her and thankfully she had a good time talking to all of the people who came to the table to register. It was so good to see her out and about…and she even found a puppy to cuddle πŸ™‚

Registration for the 5k is still open at

https://runsignup.com/Race/IL/CoalCity/CrushChildhoodCancer

The first 300 registered for this event are guaranteed this awesome race shirt that Megan designed.

The Morris Community YMCA is also sponsoring a kids fun run at 5:30 p.m. for any child 10 and under. The Y will also provide supervised children’s activities during the 5k. All participants will receive a FREE participation medal. You can sign up for this FREE event at

This journey is so difficult. In the face of constant physical pain and anxiety, Megan is working so hard to stay positive. Cancer is an evil beast that no child should ever have to face…let alone endure for seven years. I will never question Megan’s strength and resolve, but right now she needs “Team Megan” to have her back.

Win the day, and when that’s too overwhelming, win the next hour…and when even that’s too much…win the next minute. That’s the reality of childhood cancer.

Megan Needs Your Help

It’s September, which means it’s Childhood Cancer Awareness Month. Those of you who have followed Megan’s Journey know that over her nearly seven year battle with stage 4 Alveolar Rhabdomyosarcoma, she has become an ardent advocate for childhood cancer awareness. Megan knows firsthand the physical and mental pain that comes with childhood cancer and the archaic drugs that are available for treatment. She has connected with fellow childhood cancer warriors from across the country and shared in their pain and anxiety that accompany this dreaded and brutal disease. She has felt the despair as so many of her friends have succumbed to the ravages of childhood cancer. Megan has personally been through her initial diagnosis and six relapses, which have resulted in over 130 weeks of toxic chemotherapy, 200 radiation treatments, 6 cancer-related surgeries, and more side effects from treatment than I could mention in a single post. Through it all, Megan has never stopped fighting…not just for herself, but for every single kid past, present and future who has fought, is fighting, or will fight childhood cancer. From her own research and conversations with doctors from all over the country, she knows there is a cure out there…our country just has decide that our kids are worth the investment. Unfortunately, up to this point the pharmaceutical companies are too concerned with keeping their shareholders happy and the Federal government is too bogged down in worthless partisan bickering to think about saving kids. However, instead of feeling sorry for herself, Megan decided to take matters into her own hands. She started doing everything she could to raise awareness for childhood cancer. She also started fundraising for promising childhood cancer research that would result in less toxic and more effective treatments for kids fighting sarcoma cancers. To date, Megan has raised over $550,000 to directly fund childhood cancer research projects. She is currently working to raise $233,000 to fund a second research project at the Children’s Cancer Therapy Development Institute. To date, she has raised $126,000 towards her goal. Megan remains as motivated as ever to continue her crusade against childhood cancer, but right now she needs your help.

Megan is still fighting back from her August 5 surgery to remove the tumor that was located at the base of her skull. The surgery Megan experienced was difficult and invasive as it took 12 hours to complete. Although she is making progress, she is still dealing with debilitating headaches and neck pain as she works her way back. She is doubly frustrated because she knows this is Childhood Cancer Awareness month, and as she told me earlier this week, “Dad, I know I should be advocating but I just don’t have the energy right now.” I assured her that she had already done so much and everyone understood that she needed some time to take care of herself. She has given so much of herself to help so many, but right now, she needs to be a little selfish and focus on her own recovery. That’s where “Team Megan” comes in.

Megan needs all of us to take over for her during this year’s Childhood Cancer Awareness Month. She needs your help in raising awareness for the cause by wearing something gold as often as possible. If you need some childhood cancer awareness gear, you can always check out Megan’s collection through Ivory Ella that is still for sale on their website. A portion of all proceeds from these sales go directly to Megan’s fundraising efforts through the Children’s Cancer Therapy Development Institute. Just wearing something gold raises awareness for the cause and I know Megan would appreciate it.

You can also grab an awesome gold shirt by registering for the “Crush Childhood Cancer 5k” which will be held in Coal City on September 18 at 6:00 p.m. The first 300 registered are guaranteed this gold race shirt that was designed by Megan. This event is on the same night as Coal City’s “Fall Fest” so right after the race there will be a live band and food trucks. You can also show up early for the race and check out the classic car show on Broadway. We are also excited that the Morris Community YMCA is partnering with us to sponsor a Kids Fun Run complete with a participation medal. Spots are starting to fill up fast as we are only two weeks away from race day, so check out the links below to sign up for the race/walk and for the Kids Fun Run. Once again, all proceeds go towards Megan’s fundraising efforts for childhood cancer through CC-TDI.

Registration for the “Crush Childhood Cancer 5k” https://runsignup.com/Race/IL/CoalCity/CrushChildhoodCancer

Registration for the Kids Fun Run

https://form.jotform.com/212406672846055

There are so many other ways you can help Megan out during Childhood Cancer Awareness Month.

–Call your Federal Representative and Senator to tell them that our kids are worth more than 4% of all Federal funding for cancer research

–Call your Federal Representative and Senator and tell them to demand that pharmaceutical companies dedicate a percentage of their research and development budget to childhood cancer

–Make a social media post about Childhood Cancer Awareness Month

–Change your Facebook profile picture to a childhood cancer awareness theme

–Donate to support childhood cancer research. Of course, Megan would love donations to her fundraising efforts, but there are many other worthy childhood cancer fundraising campaigns and they are all well-intentioned.

–Get your local school or youth sports team to agree to wear something gold throughout the month of September. It can be as simple as gold shoelaces or a gold hair ribbon.

If you are a child fighting childhood cancer, or you are a family with a child fighting this horrid disease, September is your most important month of the year. I have no doubt that next September Megan will be back at it with a vengeance, but right now, she needs your help. Megan knows we can end childhood cancer…we have just have to make doing so a priority.

In the meantime, Megan is still fighting back from her August 5 surgery. She was scheduled to resume her chemotherapy treatments this past week, but her oncologist said she was just too weak to start again. Therefore, this coming week, Megan is going to start on only her oral chemotherapy, Temozolomide, and wait yet another week to start the daily infusions of Irinotecan. It makes Megan nervous waiting to start her chemotherapy, but she also knows that her body has to be ready to handle the difficult side effects that accompany these treatments.

On Thursday, Megan had an appointment with her ophthalmologist to check her right eye post-surgery. Prior to surgery, the tumor had been putting pressure on a nerve which was causing her to experience extreme double vision. Thankfully, her appointment showed that the surgery has released much of that pressure and they expect her eye to continue improving. Megan followed up Thursday’s appointment with a Friday appointment with an ENT to check on her nose and sinus cavity post-surgery. That was a bit of a painful appointment as they removed some remnants from surgery, but once again, the ENT thought Megan was making good progress. Unfortunately, Megan’s headaches got the best of her on both of these trips as she couldn’t control the nausea that sometimes comes with the migraines. Thankfully, the last two days Megan has started feeling much better so we are hopeful this is a good sign for things to come.

Right now, Megan is so busy fighting her own personal battle that she needs everyone on “Team Megan” to take her place in advocating during Childhood Cancer Awareness Month. It won’t take much time, but the results could be life-changing for so many kids. Will you help?

Frustrated

On August 5, Megan underwent a 12 hour endonasal surgical procedure to remove a tumor from the base of her skull. This tumor represented her 6th relapse over the past six years and eight months of her battle. We are all very encouraged as her surgeon in Pittsburgh felt good about the result of her surgery. He ordered a follow up MRI on September 30 which is when we get confirmation of his feelings about the surgery. This past Tuesday, Megan had a follow-up appointment with her oncologist at CDH where they had a long discussion about her struggles and frustrations with recovering from this major surgery. We are now about three and a half weeks post-surgery and Megan is still dealing with daily headaches and neck pain coupled with some nausea and extreme fatigue. She is working hard to get off of the pain meds, and during the day she is mostly successful, but nights are still difficult for her. Everyone on her care team believes that an invasive surgery like Megan went through is going to take time for recovery…especially considering Megan was coming off of her first round of her new chemotherapy combo, which weakened her going into this procedure. However, Megan is understandably frustrated with the slow pace of recovery and the constant pain and discomfort she has been dealing with. Her recovery continues to be a tough physical and mental battle, but she is fighting back with everything she’s got. We are hopeful the pace of her recovery picks up because seeing her so frustrated is obviously frustrating to us. As a parent, it’s hard to think of many things more difficult than watching your child in pain.

At Megan’s oncology appointment last Tuesday, they decided to start her chemotherapy treatments again on Monday morning. Getting more chemo is obviously not going to be helpful to her recovery efforts as these toxic drugs are so difficult on her body. We will find out tomorrow morning if her oncologist still think it’s okay to move forward with chemo considering the trauma her body has been through. If she does go ahead and receive her chemotherapy, the good news is that her blood counts are good so hopefully she tolerates this week of treatment well. If she gets treatment, she will go to the CDH clinic every morning this coming week to get a total of five infusions of Irinotecan. She will also take Temozolomide daily, which is an oral chemotherapy. In addition to her chemotherapy this week, she also has a follow-up appointment with her ENT to check the status of her nose post-surgery, and then on Thursday she meets with her ophthalmologist to check the status of her double vision issue. It’s not easy to receive chemotherapy in the morning and then have the energy to go to another medical appointment after, but such is the hand Megan has been dealt. As she always does, somehow she will find the inner strength to get through it.

Megan received a nice present this weekend when Kenzi came home for a long weekend starting on Thursday night. Although Megan is still resting quite a bit during the day and goes to bed pretty early at night, when she was awake, she and Kenzi were able to go to Starbucks, eat lunch at the Polk-a-Dot Drive-In, and just generally catch up. One thing Megan really wanted to do with Kenzi was go on a grocery shopping trip to Trader Joe’s in Naperville. Since her surgery, Megan hasn’t had the energy to be out much, but on Saturday, she was determined to go on the Trader Joe’s trip before Kenzi had to leave for school on Sunday morning. The girls had a great time going up and down the aisles looking for their favorite things. I think it really helped Megan to be out and about with her sister for a bit. It was a little bit of normalcy that she desperately needed.

September is Childhood Cancer Awareness Month, which over the past few years has become so important to Megan. Throughout her personal journey, Megan’s cause has become much larger than herself. Her goal is to make sure no other kids have to go through the physical and mental trauma that she has so courageously endured over the past nearly seven years.

I titled this post “Frustrated”, because not only does it characterize how Megan has been feeling as she recovers from surgery, but “Frustrated” also captures the feelings not only Megan and our family experience, but so many other families as they travel the journey of childhood cancer.

I’m frustrated that in the United States, 43 children age 0-19 are diagnosed with cancer every single day. Think about that for a minute. I’m a superintendent of schools responsible for the health and welfare of kids each day. 43 children each day is the equivalent to a busload of kids. Every day in our country, an entire busload of kids learns that they have cancer. That’s also two classrooms of students. Imagine the outrage if something happened in our schools that caused two classrooms of kids to all of the sudden be in the fight of their life. Something would change…but with childhood cancer, there is no national outrage. There is no change in funding. With Megan’s type of cancer, there has been no change in survival rates.

I’m frustrated that with all of the incredible advancements in medicine from eradicating polio to the successful treatment of AIDS to the lightening fast development of a COVID vaccine(s), childhood cancer still remains the leading cause of death by disease in children under age 19 in the United States.

I’m frustrated that every year there are about 11 new drugs that receive FDA approval for the treatment of adult cancers, but with childhood cancer, there are a TOTAL of only 4 drugs EVER that have been approved in the first instance for use with childhood cancer. Most all childhood cancer drugs used on children were developed for use with adults and then tested to see if by chance they happened to work in children.

I’m frustrated that the big pharmaceutical companies are allowed to ignore childhood cancer because it is not profitable enough for them. From talking to researchers across the country, pharmaceutical companies often don’t even allow researchers to use their existing drugs in childhood cancer treatment because they are worried about negative publicity should a child taking their drug pass away. Big pharma is a profit driven business, and they don’t see these kids as a good investment. That leaves the research up to our government.

I’m frustrated that our government only allocates 4% of all of their funding for all cancer research towards research specific to childhood cancer. Once again, there are childhood cancer researchers across the country who have potential treatment breakthroughs just sitting in the lab because there is no funding to hold a clinical trial and pursue FDA approval. Megan knows this because she has spoken with them personally. I remain firm in my conviction that if our country decided that treating childhood cancer was a priority, we wouldn’t be losing kids every day to this vicious disease. Our priorities are so backwards.

I’m frustrated and appalled that childhood cancer patients like Megan and so many others are actually forced to raise money to fund the very treatments that could save their lives. Think about how messed up it is that in a country as wealthy and advanced as ours, kids with cancer who are in the middle of their own toxic treatments are at the same time out there raising money to fund their own potential life-saving treatments. Megan has been responsible for raising over $550,000 with every penny going directly towards research projects aimed at developing treatments for sarcoma cancers in children. And please understand, Megan is not the only one. Kids across the country are holding lemonade stands, car washes, bake sales, garage sales and more to raise money to fund childhood cancer research. In the United States of America, kids with cancer are holding bake sales to raise money for the very research that could save their lives. Let that sink in for a minute. Shouldn’t our most precious resource…our kids…matter more than this?

Childhood Cancer Awareness month is so important to Megan and so many other kids, because it is their chance to shine a bright light on their cause. In the continued spirit of raising money to fund research for their own cures, the “Crush Childhood Cancer 5k” run/walk is being held on September 18 at 6:00 p.m. in downtown Coal City. Megan has partnered with a couple people in town who are helping her get the race off the ground. So far, registration has been steady, but we are looking to bring a lot of people to downtown Coal City on September 18 to not only raise money for childhood cancer research, but to help shine a light on childhood cancer awareness. This event is being held in conjunction with the Village of Coal City’s “Fall Fest”, which means following the race there will be a live band, food trucks and other fun activities. All proceeds from the “Crush Childhood Cancer 5k” event will go toward Megan’s fundraising efforts through the Children’s Cancer Therapy Development Institute. You can register for the event at

https://runsignup.com/Race/IL/CoalCity/CrushChildhoodCancer

The first 300 people registered for the event are guaranteed to receive this awesome race shirt Megan designed on race day. The race shirt is gold in honor of Childhood Cancer Awareness Month. We also have a virtual option if you want to support the cause but can’t make it to Coal City. Get signed up today and help Megan stop childhood cancer.

We are also excited to announce that the Morris Community YMCA has partnered with us to host a Kids Fun Run at 5:30 p.m. prior to the Crush Childhood Cancer 5k. The Fun Run is free and open to kids age 10 and under. All participants will receive a participation medal and be eligible for fun supervised activities during the actual 5k event. Registration information will be coming out soon for the Kids Fun Run.

For the 5th year in a row, Ivory Ella has partnered with Megan to help her raise awareness and funding for childhood cancer. Megan loves this year’s items and is so thankful to Ivory Ella for their support. Go to the Ivory Ella website today to get yours.

When you are frustrated, you have two choices. You can either sit around feeling sorry for yourself, or you can do something about it. Megan and so many of her brave childhood cancer fighting friends have chosen to take matters into their own hands. September is their month. You can show them that they matter in so many ways. Of course Megan would love to see you sign up for the in-person or virtual option for the Crush Childhood Cancer 5k. She would also be honored if you would consider purchasing something from her line of childhood cancer awareness merchandise through Ivory Ella. But you could also do something as simple as wearing something gold this month, like placing a gold ribbon on your shoe; or wearing a gold ribbon in your hair; or changing your Facebook profile to one of the many Childhood Cancer Awareness profile pictures. Gestures such as these show these kids that they aren’t in this battle alone. Help them and their families turn their frustrations into something positive…and give them the one thing they all crave so badly…HOPE.

September is Childhood Cancer Awareness Month.

Home, Healing & Hope

After a very long 20 days in Pittsburgh, Megan was finally released to come home this past Tuesday. When we went to meet with her neurosurgeon and ENT Surgeon on Tuesday morning, we already had the car packed with the hope that her release was imminent. Although Megan was still dealing with some pretty difficult head and neck pain, her surgeons said that her CT and MRI scans looked good and she could handle the 8 hour drive home. Throughout her recovery, pain management has been difficult to come by for Megan, because after all, she went through a 12 hour surgery on her head on August 5. However, I don’t think anything was going to stop her from getting to the comforts of home, friends, and her beloved pets. The 8 hour drive was tough on her as I think she felt every bump in the road, but thankfully she was able to sleep quite a bit and before we knew it, she was home.

When she arrived home, Megan was greeted with welcome signs from friends and of course, Miss Kim and Megan’s friends at Broadway Dance had to welcome her with this huge gorilla πŸ™‚

Madison Emerson was also waiting for her to arrive as the Emerson family and other friends had decorated the house for her.

Although Megan was so happy to see everyone, she was also pretty exhausted and was anxious to get to her own bed. When Megan went to bed, it took about five seconds for her Boo Boo Kitty to come and cuddle with her like old times. All was right with the world πŸ™‚

Although Megan is very happy to be recovering from her surgery at home, the process continues to be slow and difficult for her. Going into surgery, Megan was coming off her new chemotherapy cycle, so her body was already beat up. When a 12 hour head surgery was added to that, it has been a little much for her body to take. Pain management continues to be difficult as Megan is still experiencing some severe head and neck pain from the surgery. Because they went through her nose to access the tumor at the base of her skull, the area in and around her nose continues to give her problems as she still cannot blow her nose which really bothers her. They also accessed the tumor by going through the inside of her mouth between her lip and gums, so that sore is also annoying her when she tries to eat. She is also dealing with numbness on the right side of her face from under her eye to the inside of her mouth. In addition to all that, the fatigue has been overwhelming and frustrating to her as she just doesn’t have the stamina to stay awake for long periods of time. Of course Megan thinks she should be recovering quicker, but we keep trying to reassure her that these things take time…especially when her body was already exhausted from chemotherapy. Deb and I keep seeing incremental improvements every day, and soon I know she will be her old self again.

The most encouraging news is that her neurosurgeon believes that her CT and MRI showed the surgery was a success. We won’t know for sure until she gets her next MRI at the end of September, but he felt that even if some small cancerous activity showed up, it could be treated via radiosurgery. On Tuesday, Megan meets with her oncologist at CDH to discuss the next steps in her treatment, which will likely include continuing with her new chemotherapy regiment of Irinotecan and Temozolomide. This surgical process has been very difficult both physically and emotionally for Megan, but she did what she had to do to gain local control over her tumor. In fighting ARMS, once metastasis is stopped, gaining local control is the key, so now that Megan has done that she has changed the game and gained the upper hand over this relentless foe.

Although Megan continues to fight her own personal recovery battle, she continues to be about something much bigger than herself. September is Childhood Cancer Awareness Month and Megan has a lot of big plans to continue raising money and awareness for childhood cancer research. Megan’s current fundraising goal with the Children’s Cancer Therapy Development Institute is to raise $233,000 to fully fund a research project that would quickly repurpose existing drugs for use with children who have relapsed sarcoma. She has raised about $120,000 so far and would love to reach her goal by the end of September. Today was a great start as Nelly’s and Old School Brewing in Wilmington held a classic car show with proceeds going to Megan’s fundraising efforts. As always, the Nelson family put on a first class event and we are so appreciative of their support. Also, thank you to Kim Scerine and the Broadway Dancers for their awesome performance at today’s event. It was pretty hot out there for Megan and she was already exhausted, but she wanted to go see the dancers and let everyone know how thankful she was for their support. She didn’t last too long, but she did have the honor of picking her favorite car among so many amazing classic car entries. Thank you to everyone who brought their car out for today’s show.

One of Megan’s favorite partnerships has been with Ivory Ella. They are such a generous company, and for 5 years now Megan has worked with them on a line of merchandise for Childhood Cancer Awareness Month. This year’s items launched on August 20 and are available now on the Ivory Ella website. These items always sell out fast, so get yours today. Not only will you be raising awareness for childhood cancer, but Ivory Ella is also donated 50% of net profits to Megan’s fundraising efforts through CC-TDI.

Megan and some friends are also planning a 5k run/walk to be held on September 18 at 6:00 p.m. in downtown Coal City. Megan is calling it the “Crush Childhood Cancer 5k” and once again, all proceeds will go towards Megan’s fundraising efforts through CC-TDI. Registration is now open at

https://runsignup.com/Race/IL/CoalCity/CrushChildhoodCancer

All runners and walkers are encouraged to attend this fun event. This will be a fantastic evening as it coincides with Coal City’s “Fall Fest” and will include food trucks and live music. We will have a virtual option available for registration later this week. We are also excited to announce that the Morris Community YMCA will be hosting a kids fun run which will take place at 5:30 p.m. just prior to the start of the 5k. All participants in the fun run will receive a participation medal and be eligible for supervised youth activities following the fun run. Registration information for the kids fun run will also be coming out this week. There is something for the entire family so come out on September 18 and support childhood cancer research while also enjoying an amazing evening of fun and entertainment.

The last few days have been filled with home, healing and hope as Megan continues to fight her way back from tumor resection surgery. She is hoping she starts to feel better soon, because she has so many big plans for Childhood Cancer Awareness month. As Megan continues to say, this fight isn’t just about her…it’s about all kids past, present and future who have fought, are fighting, or will fight this vicious disease. We can stop childhood cancer…we just have to decide as a country that the 43 kids tomorrow will learn they have childhood cancer are worth fighting for.