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.

Sunday, March 20, 2011

When does the Hurting Stop?

I’d be lying if I said I couldn’t believe how long it’s been since my last post. The fact of the matter is, I’ve been hiding from blogging. I’m sick of cancer. I’m sick of my daughter having cancer. I’m sick of talking about cancer. I’m sick of working to avoid talking about cancer.

My life is all about cancer because it is all about Megs. At times, it seems impossible to differentiate Meaghan from cancer. At times I feel she doesn’t exist apart from it. Countless times people ask how Megs is doing. I don’t even know how to answer that anymore.

Do you mean how is she doing compared to a normal child? Or how is she compared to the fallout after the craniotomy? How is she today? Overall? I have no quick answers. To say “fine” would be a lie. She’s not fine. Nothing about her is fine or okay.

Yes, she’s made amazing progress. There is no one, not one single person on the planet that I am more proud of than Meaghan. Yet she is a ghost of her former self.

Yes, she’s completed her scheduled chemo and her bedraggled body is inching its way towards recovery. But I’m no fool. I know the cancer could return at any time without and without any warning.

So we trudge on and after nearly two months of post chemo neutropenia and fevers and hospitalizations and transfusions, Meg is making a tentative foray back into the classroom. After much discussion with Ed, Meg’s therapists and doctors, she is finishing the school year in ½ day kindergarten and will repeat ½ day kindergarten next year. This will put her two years behind her classmates.

She has enjoyed her return to kindergarten. I attend as her aide. We belong to a Lutheran Church and School, and while everyone so loves Meaghan, it is a school with very limited resources in a very old building. It is a disabled person’s worst nightmare. Truth be told, I doubt I would be very comfortable with someone other than family taking Meg to the bathroom and helping her using the toilet and such.

Our return to the classroom isn’t without its emotional fallout. I am a wreck. I am exhausted. My body is sore from transporting her. Worst of all, I just want to cry every time I walk into school. Watching her peer group just devastates me. They can stand on their own! Walk on their own!

When we are out in the real world, all I can see right now is what should have been for Megs. It enrages me. It cripples me.

My inability to cope effectively with this level of grief and rage has alienated me from my spouse and healthy children. Some days I am close to non-functioning. I wish I could let go of the rage and anger, but it keeps slapping me in the face. Every time I get over one hurdle, there’s another facet of reintegration to face. Perhaps I wouldn't be as angry if there was a guarantee that cancer would never return. But there are none.

So I cried myself to sleep with this thought: I can’t bear to have her die again.

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