Friday, May 7th was the six month anniversary of Meaghan’s diagnosis. Six months. Six months of hoping, waiting, grieving, loving and living.
Today we are in the waiting room once again. Funny how a small surgical procedure bring all these memories to surface. After the procedure to replace the peg tube with a MIC button, Meg will stay in the hospital for a few days for chemo and post hydration. I wish I could say we fearlessly approach the third round of chemo with undaunted strength, but that would be a lie.
The week before chemo is tense in our house: edgy, inpatient, angry. The tension runs electric, arcing and surging through each of us. Meg is whiny and unsettled. Low-key Ethan is emotional.
The week before chemo everyone retreats to his or her own corner of our tiny bungalow. We hide from ourselves as much as we hide from each other. The dogs pace and shadow us. We stumble over the elephant in the room: what will this new round of chemo bring? I’m disappointed that her counts weren’t as high as they had been right before her birthday. I wish I better understood what causes these fluctuations when we haven’t had any chemo in almost a month. As a mom, nothing frustrates more than not being able “mend” what is broken. And we are broken: in body, mind and spirit.
I really fear I am unable to take another step forward with Meg. I’m scared of losing this battle, perhaps even more scared of what winning might look like in the years down the road. I watch with a mixture of fear and frustration as simple word choices escape her more frequently. I patiently repeat the answer to the same question for the fifth time in less than an hour. I can’t decide if I want to hide in the closet until this is over, whatever “over” means, or if I want to pack up Meg and run away.
There is this perverse little quip fellow medullo/PNET parents share with another: BTs (brain tumors) are the gift that keeps on giving. And yet, we also agree, we never experienced moments of pure joy before we were faced with losing our children. Before they wheeled Meg into the OR, she kept chanting, “I’m hungry! I need food NOW!” I wondered, will I hear her voice again or will we be mute again? It was with great joy that I heard her plaintive demands for food after surgery!
This is Meg’s third round out of nine rounds of chemo; thirty-three percent closer to the finish in this leg of the race. This percentage is exclamatory no matter which way you look at it. Much like Meg herself, simply exclamatory!!
I will fight for you Meaghan. Mom, Dad, Ethan and Madison, we’ll all fight for you, fight because of you, fight over you.