The Smilow Cancer Hospital Radiation department has the biggest fish tank in the hospital. I wish I was still blissfully unaware of this “fun fact” but the truth is, I see this fish tank five days a week. Today is not a good day for me and I wish I could trade places with the fish I am gazing at through tired and bloodshot eyes. Today I feel like my legs just might give out on me at any moment… like the strength and power is slowly being drained from my body with every passing day and every awful experience. It was just seven weeks ago we were admitted to the hospital and this nightmare began, but I feel like we have been battling for years. Something that scares me when I think that the worst is in front of us.
I manage the strength to hold Lea up as she looks at the fish. Her balance and coordination have been getting worse, so she needs us more than ever to stand and move. Today we stare into the fish tank and she yells “there’s Dorrie!” just as a bright blue look alike swims by. Just keep swimming, just keep swimming… I start to repeat in my head as we wait for Lea’s turn. With just seven radiation treatments left we are nearing the end, something I am not happy about, but will happen regardless. The doctors decide to up her steroid dose this week after observing Lea and then Mike and I file into a small conference room to do our weekly chat about the next step… clinical trials and experimental treatment. While there are several “exciting” trials, there is nothing positive about the outcomes and I feel no hope, only anger and sadness. People keep telling me not to lose hope and I want to scream at them as loud as I can muster. Easy to say when it is not your kid. I wonder how they would feel in my place? Watching trial after trial fail, child after child get taken from their family, no cure in sight.
I have two hourglasses that sit perched on a bookshelf in my living room, surrounded by beautiful black and white moments of my family. I look at these hourglasses with distain these days, wanting to throw them across the room, sending sand and glass everywhere. Today, I feel shattered and broken, just like I want to do to those hourglasses.
On August 16 when they told us about Lea’s condition and the prognosis, I felt as though someone flipped an hourglass, very Wizard of Oz like. Every day more and more sand falls through the tiny opening, and we have no idea when that sand will run out and we will lose our child.
I meet the eyes of other parents at Smilow and we give each other a knowing nod. Our eyes tell the same story, but deep down I wonder if there is hope for their child. Part of me feel jealous of the kids getting treatment, wishing that was my kid. There is hope running through those IV’s… hope I don’t have right now.
I love the days that are sprinkled with laughter, where I can find joy easily, today is just not one of those days.
Wednesday right now means a long day at Smilow and art class. Today we leave art soon after we arrive. Lea is tired and doesn’t feel like participating. She falls asleep in the car and I carry her inside, a reminder to myself that even though I feel differently, I am not weak and frail, I am strong and powerful. Just keep swimming…
Ways to help:
Rascals Gym is putting on a fundraiser in Lea’s honor this Sunday from 10-2 at Cold Spring School. More information can be found here.
Arden from Beautycounter is donating her commission from every purchase made through the end of September to Lea. You can shop that fundraiser here.
Less than 34 tickets are available for the wine tasting and pizza truck fundraiser hosted by Votto Vines on Saturday, October 7. Get your tickets here.