As Megan and our family close in on four years of her battle with Stage 4 Alveolar Rhabdomyosarcoma, there seem to be more and more milestones she is reaching. On December 30, 2014, we learned for sure that Megan had Stage 4 ARMS, and at that point, we had no idea what the future held. Her doctors told us that her case was extremely advanced and ranked as one of the worst cases they had ever seen. She had tumors all over her body including in her bone marrow, and the disease was intensifying by the day. Of course her doctors tried to remain as positive as they could, but they also pulled no punches with us. I had also started reading everything I could online about ARMS and the statistics were sobering to say the least. At that point in our lives, thinking past tomorrow was almost too much to bare. However, thanks to Megan’s incredible determination to win, her amazing medical team, and the support of family, friends, and everyone on “Team Megan”, she continues to defy all of the odds. Not only is she still fighting, but she is starting to reach some of those milestones that we thought we might never get the chance to experience with her.
Those traditional rights of passage for teenagers that many parents might take for granted have become momentous occasions for us. Going to her first Homecoming Dance; attending her senior Prom; and watching her former volleyball teammates include her in their senior night recognition were all so special to us. I realize those moments are special to every parent, but for us, they held a little extra meaning because we never knew if Megan would get to experience those events that many others might take for granted. When you have watched the look on your child’s face when her doctor told her she had stage 4 cancer. When you have stood by helplessly as your child went through 54 weeks of chemotherapy hell. When you have stood in the intensive care unit watching as your child is hooked up to more tubes than you can count and not knowing if she would make it to tomorrow. When you have gone through such trials and tribulations; it makes the little things seem so much bigger. This past week, Megan got her senior pictures taken, and it might sound a little sappy, but when I first saw the pictures I was overtaken with emotion. I wasn’t emotional just because I think she looked gorgeous (and I fully admit I am more than a little biased!). My emotion was based on the fact that she had once again defied all of the odds and reached another milestone that can never be taken away from us. We have Megan’s senior pictures!!!
I realize that her album was already posted on her Team Megan Facebook page, so I won’t force you to see them all over again, but I will share a few of my absolute favorites. I think so many of her pictures perfectly captured both her huge heart as well as her steely determination. In some of these pictures, her message of “I got this” comes across so clearly.
It is when we get to experience moments like Megan’s senior pictures that I am reminded of how lucky our family really is. By having a daughter fighting cancer, our family is part of an exclusive club that no one wants to join. As a result, we have connected with families from all over the world who share our unfortunate common bond. My heart continues to break when I learn of yet another family who will not get to see their child go to Prom or experience the joy of seeing their child’s senior pictures. Cancer is so cruel, and the fact that our country still cannot find a less toxic and more effective treatment option for pediatric cancer continues to boggle my mind. My heart goes out to a family I have been in contact with for a few months now. Their precious daughter had started college when she was diagnosed with the same cancer as Megan. Tragically, she did not respond to treatment and passed away earlier this week. Although I didn’t know Aimee personally, I communicated with her mother often via text, and even through these text messages, I could feel the despair she was experiencing as she searched for answers and help for her daughter. Please keep Aimee’s family in your thoughts and prayers as we have lost another beautiful soul far too soon. Cancer is so evil!!!
Our children are this country’s most precious resource, and we are failing them miserably when it comes to finding less toxic and more effective treatments for childhood cancer. Unfortunately, there are kids like Megan all across the country who have decided to take matters into their own hands by raising money to support the very research that could save their lives. In a country as advanced and wealthy as ours, how is that okay? How is it acceptable that kids with cancer are raising money to fund research for their own treatments? The answer is that it’s not okay. As I have said many times, when our country sets its mind to something, we accomplish it. It’s simply a matter of priorities, and what could possibly take precedence over the health and well being of our children?
Megan is still actively working to raise money to support Dr. Walterhouse’s important research being conducted at Luries Children’s Hospital in Chicago. She is very excited because later this week she is traveling to Luries for another check presentation to Dr. Walterhouse. To date, thanks to the generosity of so many amazing people, Megan has raised over $126,000 to support this research!!! However, she is not done yet. She is continuing to search out willing partners to assist her in her efforts, and anyone can still make an online tax deductible donation by going to her personal Circle of Friends page. She will continue on her crusade to end childhood cancer, because she is the first to say that this isn’t about her. Instead, it’s about every single kid who has fought, is fighting, or will fight this devastating and ridiculous disease.
As the holidays near, I am looking forward to all of those little beautiful moments that accompany the special days ahead. I hope you are able to realize the value in all of those precious little moments, because if life ever throws you an unexpected curveball, you will realize how special those moments actually are. Until next week…