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.

Saturday, April 24, 2010

Making Peace

I've repeatedly tried to draft this blog entry for weeks now. There has been lots going on in our family and even more swirling around in my head. So many blessings, so many trials...

April 19, 2010 marked a big milestone: Meaghan turned six! On April 18th, we had a very small open house to celebrate her birthday. At Meaghan's very specific request, there was to be no singing, no blowing out of candles, no photography. She dreads focused attention.

On April 20, 2010 my Father-in-Law, John, passed away after an arduous battle with dementia. He was seventy-five. I am thankful that his body has been relieved of it's suffering. I am burdened that there are no adequate words of comfort for a newly widowed woman.

Across the state, a young boy, just seven, is given grim news. The cancer is back. Brendan wants to fight on! He has more he wants to do! He's praying, we are all praying, for his "Miracle of Miracles." Praise God, the cancer seems to be responding to the more aggressive therapy.

In a rare moment of early morning quiet, I sip my coffee and ruminate on these three different stories. Each calls into question relationships with the chronically ill, how their illnesses shape the art of living with the healthy and abled bodied, how they view themselves within the larger context of a social conscience. And by juxtaposition, how we measure against their reflection.

The larger question in play is God. And, yes, God at times is simply: "God?" Where do You fit into all of this? What are You up to? Some would ask, "Where is God at all?" in these three people's lives. I am most perplexed by Brendan and Meaghan. They are faith-filled young children. Why should a seven year old boy be facing his own mortality? There are a great many similarities between Meg and Brendan's diagnoses and initial treatments. But as I learn about more and more about other Medullo/PNET children, it all seems so arbitrary at times. Why is one child spared and another not? Does God love one child more than another? Is one more deserving of a future than another? These questions are fundamental to my faith.

As we celebrate wonderful milestones and new accomplishments, it is always with baited breath. Tom Nunn, father to Max, aptly describes cancer as an invisible wrecking ball:

"Childhood cancer is an invisible wrecking ball that you don’t see coming.
And after you receive Great News you are still waiting for the invisible
wrecking ball to swing back down again. It has a lot of momentum and you are
constantly stepping side-to-side and ducking and closing your eyes in
anticipation of the next time the wrecking ball passes and wondering how close
it will be."

While doing a craft the other day Meaghan couldn't remember if she was seven or nine! The farther we get from radiation the faster her short term memory deteriorates. Score one for the wrecking ball. Yet, several days later, her new therapeutic tricycle arrives and she's independently riding a bike!! Score one for God and Meg!!

I refuse, we refuse, to stop moving forward. We are currently training our Golden Retriever Ribby to be Meaghan's Service Mobility Dog. This will be a lengthy and costly process. We are looking at investing in a small backyard pool for exercise and therapy. We have begun to work with a group for therapeutic horseback riding. We are trying to find a music therapist and art therapist. And, of course, Meg still wants a puppy! All of these things are outside private and secondary insurance.

As we fearlessly, faithfully move forward with quality of life enhancing opportunites for Meg, my faith is challenged again. My human head and heart will never understand why God allows this to happen to children. Yet, there is peace. Call me stupid or blind, or call me faithful... I know my God, simply IS!

Yes, the Lord did not cure my Father-in-Law's dementia, but he did relieve his suffering in a humane and loving way. I know my Mother-in-Law's and my husband's family's grieving it too fresh, but God is blessing us. She will have the ability to participate more in her grandchildren's lives.

Brendan and his family are facing unspeakable daily trials, but through it all Brendan and his family bless so many. Brendan receives a daily outpouring of God's love and support through all of us that post on his pages, cheer him on, cry and rejoice with him. I am truly priveledged to come to know this young man.

And so, I make peace. The house was empty and quiet. Laying in bed with Meg, I feel her mind and body begin to relax. She is struggling with depression. We hadn't had the best of days together. With her downy soft head nestled under my chin, I let go the day's grievances. God blessed me right then and there. He gave me peace and he was with us, holding us. Feeling at peace, feeling loved, we fell asleep together.

Is it all arbitrary? The disease, pain, suffering, dying? I don't know. Perhaps growing in Christ is accepting the uncertainty with childlike trust. I think my biggest lesson in loving and trusting God is finding peace in the uncertainty, finding love in the pain and hurt.

"He reached down from on high and took hold of me; he drew me out of deep waters." Psalm 18:16 (NIV)


Friday, April 2, 2010

Here She Comes...

It feels as though we live lifetimes between posts. So much changes with Meaghan each day. Sometimes for the better, sometimes the worse.

Since my last post Meaghan has had another inpatient chemo stay. Our actual hospital stay was pretty uneventful as far as those things go. Just over 24 hours in the hospital. There is still a lot of prep work getting Meg ready for her hydrating chemo stays. Before every cycle, Meg has to have her audiogram and blood work. At the mere mention of the word "draw" she starts panicking about the poke. Our blood work is now done at home, for which I am very thankful. But even with the emla cream to numb the area, Meg has a lot of anxiety.

Meaghan's tolerance of hospital stays is wearing thin. Thankfully, "Alvin and the Chipmunks, The Squeakuel" was released just in time. Daddy was a hero and brought the dvd to her at lunchtime. Also, one of Meg's bestest girlfriends, Kayti and Meg's Nonnie came to spend the day with us. Meaghan also spent a delightful hour with the friend she was hoping to see most: Ellie, the therapy dog.

Ellie is a sweet, velvety soft, four year old buff Cocker Spaniel. Meaghan and Ellie have become pen pals since her last chemo stay. Meg has a picture of Ellie taped to her bedside wall. Ellie spent an hour curled up on Meg's bed, content to be stroked and fawned over. Ellie has a special place in all of our hearts, even Ed's. You see, while Meg may not remember, Ellie came to visit us in the ICU. At a time when she couldn't hold her head midline, could barely keep her eyes open and was in a constant state of agitation, I placed Meg's hand atop of Ellie's head and a small miracle happened. Meaghan was soothed. Her eyes opened and she moved her head in Ellie's direction. It was one of Meaghan's very first steps toward recovery.

We've shared so many of Meg's milestones that we'd like to share another: Friday, March 26th Meaghan started using a walker! She is so proud of herself! When she is feeling well, she asks to use her walker all the time. As our dear friend Jacquelyn is fond of singing with Megs, "Here she comes on the run with a burger on a bun - and pickles on side!"

I hope you enjoy watching Meaghan in action as much as we do!!