Thank you for taking time to follow Meaghan's journey of healing as she battles Medulloblastoma, a form of brain cancer.

Meaghan, our five year old daughter, was diagnosed early November 2009 after an MRI revealed she had a 4 cm solid tumor in her cerebellum. The tumor resection, while successful, resulted in serious complications.

Cancer is a family affair and here I try to chronicle not only Meg's journey, but our whole family's as well.

Thursday, March 25, 2010

Dealing with Setbacks

May is brain cancer and brain tumor awareness month. Spurred by the previous week's frustrating public interaction, I thought I'd look around for some pediatric brain cancer awareness apparel. Turns out there's nothing that combines the two. Pediatric cancer awareness is gold, brain cancer is gray, but nothing combining the two. (Not to fret, I'm working on that one.) During my internet searches I came across several foundations established in memory of children who have lost their battle against medulloblastoma. That was difficult reading.

While Ed discourages me from reading too much about these children, I feel drawn to honor their struggle by reading about them and praying for their families. For weeks, I've felt this shift in my life. A shift very similar to when you become a new mother. You feel your lifestyle and interests and preoccupations pulling you away from dear family and friends. Not many people can understand the daily toll of a life threatening illness, nor tarry long with us under the shroud that cloak's our family. Truly, it is a heavy burden to be friends with me right now: I'm a distracted, watchdog of a mother married to a medication schedule and an infusion pump. Our daily living is measured in milliliters of input and output. After months of procrastination, I've finally found familiarity by joining a medullo/PNET support group. The simple act of reaching out to others directly affected by this was a huge relief. My friends are no longer my sole outlet for my frustrations. It feels good to move towards reclaiming my friends for me and not solely as a sounding board for our medical concerns. It's a foothold back into my old life.

Our life together now is a chiaroscuro: an interplay of light and dark. Moments of singular clarity and beauty pierce the struggles: Sitting on the floor, I looked up and watched Meaghan cradle her daddy's face in her hands and sing to him "Right Here Right Now" from High School Musical 3. Or when Meg asked Maddy for a hug after they've squabbled, "because I love you, Maddy." And the other night when Meg, Ethan, me and our two dogs were all piled on Meg's bed, snuggled under blankets watching TV. I want those moments branded into my memory.

Meg and I need those memories when we're sloshing through the rain to get to our audiogram appointment. I need those memories more when the results aren't what we'd hoped. Meaghan is already showing a drop in hearing for very high frequency sounds. The chemo is already eating away at her hearing. The start of hearing loss is a minor setback on our new spectrum of normal. Though it is certainly disappointing as we have nine more months of chemo.

We, as a family, are prayerfully pacing ourselves. We are cautiously making very modest plans for the upcoming summer. Anything less seems disrespectful to all those who have gone before us.


  1. Not sure if you had seen this or not, it's close to having bot things on there!,370261845

  2. Hi, I know your cousin Bob and he told me about Meaghan because he knew I have a grandaughter with the same type of cancer. She was diagnosed almost 3 years ago and also had the posterior fossa syndrome after surgery. She has been through the chemo, radiation, and physical therapy. I am happy to say she is doing fine now, but it did take time. As I read you posts, my heart breaks for you and I want to be able to do something to help. I have spoken to my daughter and she would love to talk to you. She is loving and caring and would be able to really let you know what to expect. She has been there and done that. Please know that we are all praying for Meaghan. God has brought us through this journey and I have faith that He will bring you through also. God Bless. Carolyn


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