Some Tough Questions

The other week Madison and I took a walk. She unloaded all the ugly feelings she'd been hoarding over the last few weeks. As we walked along I listened patiently to the litany of grievances she had against me: too busy with Meg; on the phone with doctors too much; too tired to do fun things, etc. As we sit down at the picnic table in the backyard, she asks, "How long will Meg be disabled?" I say, "Well, to some extent, her whole life."

"What! You never told me that!" So untrue. The next few minutes are spent revisiting the finer points of physical and mental rehabilitation: we don't know how the late effects of radiation will impact her, only that they will. We don't know how far she'll progress with physical, occupational and speech therapies. In my heart, I know she will always carry disabilities, both mental and physical. But my next exchange with Madison cuts me:

Maddy: "Mom, will Meg have to go to a special high school?"
Me: "I don't know, Maddy. Maybe."
Maddy: "Mom, who will want to be Meaghan's boyfriend? Who will want to marry her?"

And that's really the crux of it, isn't it? Who will want, love and care for Meaghan as an adult? Will she need care as an adult? Will she be self-sufficient? The past few weeks, as my Maddy and Ethan lament my lack of availability, as I wade through the near constant clutter and laundry of our household, I question the value of my efforts. Is it worth short-changing the rest of the household to pursue therapies and treatments and services for Meg?

Of course it is worth it! End of story. Right? Not so fast. We must incorporate Meg’s needs as an inclusive family effort. That’s a pretty tall order. How have I measured up? You’d have to ask my fiercest critics: Madison and Ethan. It is easier to rage against Mommy, a tangible constant, rather than rage against a nebulous enemy that lurks in your brain.

We have figured out that before scheduled an inpatient stay we do something fun together as a family, like see a movie. We have lots planned for the summer: a quiet trip to a friend’s cottage; lots of physical and occupational therapy; lots and lots of swimming; maybe even a return to Great Wolf Lodge. Now all’s we need is for Meg’s counts to cooperate. We want this summer to be about family and not just about Meg.

So, here we are again, at an inpatient chemo stay, starting the fourth cycle out of nine. It’s the last week of school, Madison had a field trip yesterday and an awards banquet tonight. I missed both. Ethan has his last field trip of the year. I’ll miss that, too. I wish I could be at all places. Every mom wishes that under normal circumstances. Perhaps the only solace to offer the big kids is that I would be there for them. I need to believe that both Maddy and Ethan know without question that I would advocate for them as relentlessly as I do for Meg.

One closing note: while Maddy grieves the loss of her childhood and struggles to manage the resentment she feels towards Meg, she did say, without hesitation, that Meg should live with her when she grows up.

A Fearful Mom

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. Madison channels her sassy teenage self. Ed is stoic. I am enraged, mostly at my own impotence. It would be easier on everyone if I romanticized Meaghan’s Odyssey: how everyone could marvel at a family’s fortitude under duress; how we all band together for the greater good. Ha!

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.

**Engage*Inspire*Love**

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)

**Engage*Inspire*Love**

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!!

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.

Grateful But Grieving

The morning light is bright and diffuse, the window sheers glow a sherberty purple. It's a truly gorgeous early spring morning. The house is ours again, the morning chaos trampled out the door a few moments ago. I'm enthusiastically plying Meg with various activities: painting, play-doh, coloring, clay, games, babies, a walk. Meg is tired, too tired.

Yet, "Mom, what can I do?" is the endless refrain from a five year old, too fatigued to actually play, but too awake to idly lay around. Through gritted teeth and forced fake smile, I repeat our options. No, she wants someone to come and play - anyone. Everyone is at school, I gently remind her. She's lonely for her peers, as am I. She wants to go to the store. We can't, I remind. We have to wait until after you've pooped, then we can go to the store. Her diarrhea is unpredictable and much too difficult to manage in public.

Slowly, slowly I administer the meds into her G-tube. Twenty, thirty minutes pass. I see it in her face. Sure enough, minutes later, I'm holding the bucket and stroking her back. She collapses back onto her pillows after vomiting. She's so tired. But we're home...

Homebound. Different than "homeward bound." Different than "home." To have a 41 lb child declared homebound by an insurance company means it requires extreme effort to leave the home. Understatement. In the eyes of an insurance company few children are homebound, well, because you can just pick them up and move them. "Homebound" assumes a different nuance. It ceases to be a place of being and becomes a state of being. Caregivers wear this mantle as well. It's a shared identity. The constant endeavor to stay upbeat grinds you down.

We go for walks as the weather allows. The fresh air exhausts her faster than a therapy session. It's good, though. She's quiet when we walk. Taking it all in. Content for a short time. Outings to stores are more difficult, but they are a welcome diversion. This past Sunday we ventured out to Toys R Us. We suited up: wheelchair, mask, feeds, travel pump, back pack filled with pull-ups, wipes, extra clothes - just in case, and the ever-trusty puke pitcher.

It's a typical pre-Easter Sunday at the R Us. A little nutty, plenty of families out and about with their children. What surprised me, however, was the prevalent ignorance. Meg and I left feeling disgusted and dirty. Mothers (more than one) actually pulled their kids away by their shoulders as we wheeled down an aisle. Parents shushed their curious children. It's not the children's curiosity that is inappropriate, it's the adults' fears and lack of social etiquette. Hell, we just wanted to go to a toy store and feel normal! I realize people feel unsure how to handle these situations. A simple smile is all it takes folks! Last Sunday was the end to a really rotten week. Too rotten to itemize. The long and short of it is Meg and I are really struggling.

I'm angry. Crazy, 5 O'Clock News angry! The world has moved on without Meg. I knew this would be the natural course of events, but now she realizes it. And she's hurting. And I'm angry that she's hurting. I'm angry that I'm alone every morning holding the bucket while Meg pukes. I'm angry that I'm alone wiping her sore bottom.

Meg is angry that she cannot walk or toilet or color or write or use scissors or ride her bike like before. Meg is angry that she vomits nearly daily. "How many times am I going to do this, Mom?" She knows normalcy is on the other end of finishing chemo and using the potty. Both of which she has no control.

Gratitude requires an awareness of something lost. We are so grateful to have Meg with us, to have her home. But we are grieving, too. We hear people chatter with excitement about Spring. It's hard for Meg and our family to get excited about Spring. This is our first spring, our first Easter since the diagnosis. Our family is so different. Meg is so different. And watching her grieve her own losses is agonizing.

Meaghan's sixth birthday is fast approaching. Her wishes are simple. Mine are not. I am praying that the Lord will snuff my anger. I look forward to returning to rejoicing in the simple joys of family. In the midst of my anger I am grateful for my husband and my mother, who listen with patience and love as I rage against this most unfair world.

How Dad Feels/For Meaghan

Dads are supposed to be strong. We are not boys, we are grown men. We must be strong, brave, willing to fight, and somehow remain cool among everything.
I am not close with my Dad. Not since I was a boy. There are reasons, but most are out of either of our control. But these are times, where I wish we could be, just to talk. But for now, I’m on my own.

Things don’t happen for a reason.
They happen for many, many reasons that I cannot even pretend to understand.
What I do know is that a 5 year old girl has sacrificed nearly everything in her life to make ‘The Moleski 5’ complete again.The big kids have changed so much in the past 4½ months. A lot of it was their doing, but honestly, we are making them grow up faster than they should. I am amazed at the level of patience that they have shown for their sister.
For me, I certainly don’t care about the things that I used to think were important. I’ve seen the best in people that I never knew existed. Most of all, I’ve learned that there are things/people in life bigger than myself. I know my wife well enough that she feels the same.
If Meaghan calls for me every 5 minutes for a hug, we won’t hesitate. (At least for the first 15 times). Regrettably, I use those instances to get the strength I need to continue. That’s not exactly the most admirable thing to do, I know. It’s a lot to put on a 5 year old. And it’s ironic that most of the time I could not survive any of this without the strength of my little girl.

So let’s be honest. It’s not about being cool anymore. And I’m not the brave one here. None of us are. In fact, we are all cowards, fearful of how this will end and how it will affect us and those around us.
Meaghan is the one who is providing the strength, courage, and power to all of us.

Bear with me
Meaghan, I’ll be strong.
I’ll stand by your side. Always.

Remember how we danced, after everyone left?
You stood on my feet until we were too tired
Even to sleep.

Ask me for anything.
I’ll give everything I have.
Take my hand and I will follow
Wherever you lead. I will never let go.