Always Fighting Back

About three weeks ago, Megan completed her 14th proton radiation treatment to address her third relapse, which is a tumor in her chest that wrapped its way around her aorta.  Originally, she was schedules for six weeks of radiation, but her radiologist decided that they could hit her tumor with the proton beam from two different angles at each appointment.  This allowed her to finish her treatments in three weeks as opposed to six, which was a relief to Megan.  After completing this latest proton radiation protocol, she has now added well over 100 radiation treatments to her 90 weeks of chemotherapy.  Now she is in the waiting period as her doctors want her to wait two months before her next scans to make sure all of the swelling from the radiation subsides to avoid any false readings on the scans.  This week, we verified that she will receive a CT and PET scan on March 11.  Although the two month reprieve from treatment is welcome, one thing we have learned throughout this trying journey is that the fight Megan is waging doesn’t stop just because there is a break between treatments and scans.  We know all too well that the physical and mental battle never ends for these brave children who are fighting the evil that is pediatric cancer.

Megan’s body has been ravaged throughout her four year battle.  Due to a lack of Federal funding to support research into childhood cancer, the treatments available across the country are archaic and therefore extremely toxic.  After receiving 90 weeks of intense chemotherapy, Megan is now trying to focus on gaining some of the strength and stamina that has waned during treatment.  Ten minutes on the stationary bike is extremely taxing for her, as is 15 minutes of walking on the treadmill.  She is still fighting irritating digestive issues that have been caused by the nerve damage she experienced as a side effect of one of her chemotherapy drugs.  Although she has regained much of her mobility from her previous foot drop issue (once again caused by chemotherapy), she still fights to lift her toes when she walks.  She still suffers from back pain when she is standing too long and fights frequent headaches.  She also gets extremely tired at times during the day, which is when her kitten Willow comes over and shares an afternoon nap.

Of course, after getting up early this past week to check the roads due to snow and ice, I guess I needed a nap as well 🙂

However, as usual, all of these cancer-induced impediments are not stopping her from fighting back.  She has been using the stationary bike for 10-15 minutes per day and also walking on the treadmill for 10-15 minutes per day.  She has also started to incorporate stretching and core exercises into her routine in an effort to regain her physical strength and stamina.  She is also watching her diet closely.  Although the physical recovery is hard, it pales in comparison to the mental recovery that she is still fighting back against.

Unless you have experienced it yourself, none of us could ever understand the mental anguish and anxiety that a teenage cancer victim must endure.  Just think about this…Megan has recently completed the treatment for a seven centimeter tumor that is wrapped around her aorta.  However, she has absolutely no idea if the treatment was successful and she won’t know that until after her scans on March 11.  In the meantime, she is a 17 year old teenager getting ready to graduate from high school, but due to cancer, instead of thinking about what college she is going to attend, her mind is constantly preoccupied with not only the status of the tumor in her chest, but if the cancer is striking any other part of her body.  It’s easy for those of us on the outside to tell her to just forget about it and think about other things, but when you are a teenager and already thinking about your own mortality, it’s not that easy.  I find it amazing that she is even able to function each day with the anxiety and fear that she lives with on a daily basis.  Thankfully, she always has her family here to support her.  Even with her sister away at college, they can still communicate via Facetime when Megan needs a little pick me up.  She also has places like the Broadway Dance Studio where she works with such amazing people as Kim Scerine, Emma Frantini, and Jaime Frazier who are always there to support her.  She works on Wednesday and Thursday nights, and she always comes home from there like a different kid, because for those few hours she is able to put childhood cancer out of her mind.  She also has great friends like Katelyn Guthrie and Makenna Emerson who help to take her mind off of her fight.  Thankfully, she also has her social media colleagues from across the country and the world who truly understand what she is going through.  Teens who are fighting cancer can speak a language that none of us can even pretend to comprehend, and when Megan is really struggling, those are the people she reaches out to.  All of them are so courageous and understanding.  They have truly been a blessing in her life.  Once again, the mental battle is grueling, but Megan is fighting back with everything she’s got.

Now that Megan has completed her high school coursework, she has also been busy doing various chores around the house in addition to her physical workouts.  She also still finds time to bake once in a while, which makes her mom and I very happy 🙂

I really cannot imagine anything more evil than childhood cancer.  Everyone knows how the disease ravages the body, but few understand the toll it takes on the mind.  These kids who fight back every single day with everything they’ve got are the bravest, most courageous people I have ever met.  It’s because of these kids that I have hope for the future.  Because the adults in power are not a voice for them, these kids continue to make their voices heard and advocate for a change in childhood cancer funding.  We cannot continue to accept the fact that our kids are being treated with chemotherapy drugs that are 30 years old and a bi-product of Agent Orange that was used as a military weapon in the Vietnam War.  We cannot continue to accept that the greatest country in the world has made NO progress over the last 50 YEARS in the survival rates of stage 4 Alveolar Rhabdomyosarcoma.  We cannot continue to accept that in 2019 1,500 more U.S. kids will lose their battles with cancer.  We cannot continue to accept that only 4% of Federal funding for cancer is dedicated to researching pediatric cancer.  These kids will not accept it and neither should we.  That’s why Megan continues to advocate to anyone who will listen to her.  It’s why she has raised over $140,000 to support the important and promising research being conducted by Dr. Walterhouse at Luries Children’s Hospital, and she is continuing this fundraising effort for anyone who would like to join in her efforts.  We have to follow the lead of these brave kids and make a change happen…not just for Megan, and not just for the kids who are currently in the fight…but to make sure that NO MORE kids have to go through this tortuous battle.  Until that glorious moment, we will just have to keep the faith and continue the fight.  That’s the hand Megan has been dealt, and since she can’t change the cards, she just has to change the way she plays them.  So far, my money’s on Megan!

Until next week…