The Netflix hit with the cult following Stranger Things has become an excellent distraction over the past two weeks. Tuesday night I needed just that as the start of Lea’s clinical trial was looming the next morning. With only two episodes to go on season one (yes, I am late to the game) I cozied up on the coach with a glass of red to binge and veg. “You know his daughter dies, right?” “Yes I know.” “Ok, well they show it in this episode so get ready” Mike warns me, fully aware I hate being scared, I hate gore, and can’t stomach any sort of human suffering. I will watch through my blanket like I do all the “scary” scenes with monsters and gore.
If you have seen the last episode of season one you might remember seeing Hoppers daughter die. Or maybe you don’t… but it is all I can remember from this episode. As the scene of his daughter dying from cancer flashes on the screen I start sobbing and scream “she dies from F****** cancer!?!?” Mike fumbles with the remote as he quickly tries to fast forward to a less horrifying scene. You know, like a monster eating humans, or people’s heads imploding… something less close to home.
The sun is shining as we head to Dana Farber the next morning, Lea is happily strapped into the back, her new travel DVD player flashing one of her favorite movies, Pippi Longstocking.
A bad accident re-routes us and we end up driving through a neighborhood in Framingham, MA. “This is the town Devin was from” I tell Mike as we weave through the roads. And then I start to see them… trees wrapped in green ribbon, green #whynotdevin signs nailed to the old trees that line the the winding road, and lastly, a banner hung over the front door of one home reading “Defeat DIPG.” Strange irony as we head to Dana Farber for our first treatment on a clinical trial for DIPG, a rare form of brain cancer that most are not even aware exists (despite it killing hundreds of children each year… close to 400 just in the US alone. Consider what would be done if something else was killing our future… like a safety law or a toy or food. Just consider.)
I learn that day that too many children have cancer. I learn that Lea has a even more aggressive form of DIPG, which grows even faster and kills even quicker… but is also the reason she is in this clinical trail. I learn that 400 kids lives a year is just not enough for drug companies to develop a cure. I also am reminded of how resilient children are as I watch in awe of Lea’s bravery, strength and how she knocks down all of her “hard jobs” with nothing more a few tears and a few screams, which is more than I can say for myself.
I have to leave the room while Lea get’s her IV put in. The last time I had a vasovagal response and passed out so it is best for both of us that I am not present (talk about a bad moment for me as a mom). I plead with God over a stainless steel sink in the parent snack area, a perfect place for my tears to fall. I wish she had my huge veins as they struggle to get an IV line in, and I wish I had her cancer as I struggle watching her go through all of this. I wish I could take this all away from her, I wish I could be the one to go through it, not her.
I flux between being brave, silly and sad. For Lea, for our family and for every family that is around us, all battling this thing that shouldn’t exist called pediatric cancer.
It is dark when we head back home almost seven hours later. We pass by a high school where teenage kids are laughing and goofing off as they wait for their parents to pick them up. I wonder if Lea will ever get there, if she will make it to high school, and if I will ever have the chance to worry about her doing “teenage” things.
It is after eight when we return home, Shake Shack in hand, as promised. We eat burgers and fries, we sip on chocolate shakes and we belly laugh over Mad Libs… and for the first time all day I feel at ease, even if for just ten minutes.
Today at Target one of the employees strikes up a conversation with me and brings up Black Friday as I look around and notice the Christmas trees and holiday decor all around. It is all moving too fast. Everyone wants to wish away the days, and I want time to stand still… I think to myself as I wander through the isles, my cart slowly being filled with things I both need and don’t. (Damn you, Target!) That’s life though isn’t it…the sun rises and sets every day regardless of what is going on in the world, or in your life.
Every day might not be good, but there is good in every day.
As the days pass and I struggle to find the joy and the good, but I am working at it. Today the good is found in an awesome workout surrounded by powerful women, a snuggly night at home with family and a friend (and wine), and celebrating an amazing husband and dad’s birth tomorrow. For tonight, I’ll drink to that.
You can purchase one of Lea’s owl tees from now until November 26 here
This Sunday, November 12 I will lace up my running sneakers from the first time in a long while for the best cause, Lea. You can learn more about this 5K and register here.
For Our Prayer Warriors:
Please pray that this treatment works for Lea and for the other 28 children across the US in this trial.
Please pray for wisdom and guidance around this trial and other options that involve us leaving the country.
Please pray that we are able to find peace, joy and happiness in spite of tragedy.
Please pray for patience in dealing with Liv and Keira.