Once you become a cancer family your world kind of slows down then it can rapidly speed up as you decide what your role will be in fighting the battle of whatever type of cancer you are up against. When we were leaving the hospital on D-day, the day LJ was diagnosed, the nurse that had waited with us knowing he had DIPG before us told me that she would keep an eye out for his “warrior page” on Facebook. I was so confused by what she meant. At that point I wasn’t even aware that the tumor they were calling DIPG was cancer so I’m shocked I remember that detail but for some reason the most random ones stick with me. Low and behold I found myself in the next 48 hours deciding what LJ’s Facebook page would be called and of course we went with Cancer’s Kryptonite. LJ would beat this. He would be kryptonite to cancer.
Something that can seriously weaken or harm a particular person or thing.
I wasn’t really sure the goal of his Facebook page, I really created one because I felt like I was supposed to. I knew it would be a great place to keep our loved ones informed, gain prayer warriors, and raise awareness about DIPG. Which brings me to September. September is child cancer awareness month. A month I didn’t even know existed until September 2018 and now it was 2019 and I wanted to do my best posting daily information about DIPG or childhood cancer statistics in general. I saw other pages do this in 2018 and it was encouraging to me but 2019 came around and I still did not have the mental energy to post on social media daily about childhood cancer. At first I was disappointed in myself but I have learned that all of this is completely okay. Spreading awareness through social media is something I did and do but I would much rather be in the community making connections with people face to face and sharing our story that way.
The Cure Starts Now and Graeter’s Ice Cream gave us this opportunity in the month of September! Every year Greater’s comes alongside The CSN to raise money to fund research. This year LJ was asked to join two other warriors, Addison and David, to help promote this event. Graeter’s also releases a flavor called Elena’s Blueberry Pie, lovingly named after The CSN’s founders daughter Elena who passed away from DIPG 12 years ago. We spent the month visiting in the Beavercreek location Graeter’s, eating tons of ice cream, a little segment on the mid-day news, and I was able to speak to some of the Dayton store employees. I know that when I am fighting for a cause it is helpful to have a face or story behind it as motivation. The Graeter’s customers and employees showed up by raising over $220, 000! That is a shocking number! I am grateful we were able to be a part of such a successful event.
We also came up with the idea of Emmaleigh’s cheerleading team wearing gold bows for the month of September. Gold is the color of the childhood cancer awareness ribbon. We had some made by the lovely Designs by Kyle and had enough to share with Chole’s volleyball team! It was beautiful seeing so many girls wearing gold bows and spreading awareness about childhood cancer. I was able to answer questions and tell people about DIPG.
In the middle of the month we had LJ’s clinic visit, all was well and he would be starting cycle number 17 of the clinical trial. Truly a miracle. Every month he is cleared to continue the trial is a reminder of how faithful God has been through all of this. We let go of control and gave LJ the opportunity to be a part of this trial and God has sustained him and us through it.
After the appointment we went to the Newport Aquarium! It had been so long since we visited, LJ didn’t remember it at all and it was such a fun memory. He was so excited to experience all the animals! I really wish I could have bottled up all the joy he had while looking at everything. It was all brand new to him.
Emmaleigh and I were about to start a Marine Biology unit in Science and it was amazing watching her share her knowledge she already had with her little brother and the employees. The man that was supervising the touch tank had a daughter who was in college for Marine Bio and it was so cute listening to him encourage Em about going to college one day. We also spent a weird amount of time talking to the woman at the shark touch tank. Her and Em really connected talking about sharks and I stood their listening to them both trying to soak up some knowledge about sharks myself.
We went back down to Cincy later that week to be a part of Marty Brennaman’s retirement as a Cincinnati Reds Sportscaster. Marty has been such an asset to the Dragonfly family. Before we even knew that childhood cancer was (I hate saying that but it is so true, I had avoided it my entire life and only thought of beautiful bald kids on the St. Jude’s commercials as kids with cancer) he shaved his head on the field to raise awareness and make kids fighting for their life feel normal and empowered. He was and is a remarkable man who always took the time for us when we attend games. It was an honor to be a small part of his retirement.
One of the girl’s who was on the field when Marty shaved his head was represented by her family, she was resting beautifully in Heaven. I didn’t know or notice until we were walking out onto the field and her mom was crying watching the video of Marty’s memories with Dragonfly, I started to put it all together. Being a cancer family we are now surrounded with impossibly strong parents who have lost their child. You can’t help but to try and put yourself in their shoes as a mom who often wonders what LJ’s future holds. I watched this woman and her family sit on a field watching kids who were battling when theirs was living and enjoying Marty’s company. It was hard and something we as DIPG parents struggle with everyday. Watching LJ and Emmaleigh for that matter, thrive when so many kids are leaving us everyday is something I could only describe as survivor’s guilt. The tricky thing about it all is LJ is not considered a survivor but having surpassed his prognosis and thriving the way he is I can’t help but to feel that way.
Guilt in general is a difficult emotion, it can cause you to change a situation or cause you to run yourself emotionally into the ground. Living with guilt of your child thriving while others are not is emotionally straining. One moment you are so grateful you child is climbing the play place at the aquarium and the next your heart is shattered because a fellow warrior is no longer with us. Survivor’s guilt is something I am ultimately thankful for because it means my son is alive and well. Though it doesn’t change the complexity of the emotion.
Becoming a cancer family is something that I could never imagine having to endure. There has been so many blessings and heartaches during this journey. Some aspects I wouldn’t give up for the world, some things I wouldn’t wish on my worst enemy. As September and childhood cancer awareness month came to a close we were still navigating what being a “cancer family” would look like for us, well over a year later, but I think it will be a fluid thing for our family right now. Sometimes we’ll be active in the battles and sometimes we’ll be behind the lines just trying to squeeze out any bit of normal we have left.