My Mind's Eye

Sharing some well-deserved down time with a dear friend of mine, conversation naturally drifted to Meg. We’d been tabling the conversation until after we caught up on the more lighthearted news. With cocktail glass emptied, the plate cleared; it was time to get to the heart of the matter.

I respect this friend of mine. She’s been through hell and back – not unscathed. Over three years ago, she buried her husband who had died suddenly in an auto accident, leaving her to raise two small boys. I ask her questions others don’t have the strength to even ponder. And I know I’ll get an honest answer. How long did you stay angry? Are you still angry? Do you ever stop grieving? Is the second year any better than the first?

In many ways, Meg is so altered by this cancer that I profoundly grieve her and our family’s losses. My friend understands this, justifies this. I share the grinding details of Meg’s daily care. She doesn’t minimize my loss, but does answer the unasked question: She would have wanted his survival regardless of his physical limitations. I fall quiet; looking into my glass of ice water, hoping a worthy rebuttal appears in the glistening cubes. Nothin’. Crickets.

She’s right, of course. Having Meg is by far the best scenario. Her gentle longing isn’t a criticism, rather a shared moment of loss and reflection between good friends. It was a comfortable silence.

We talk of moving forward in our lives. Using the book analogy, my friend thought their lives would be a book together, not that she would continue on, her time with him comprising only several chapters in her life.

I didn’t care for the thought of that at all.

Several days later, my thoughts wandered back through analogies I could live with: Venn Diagrams? Rigid, but better. With Venn's we are separate, overlapping yet independent. Then my mind saw thousands of circles and diagrams this way. Ripples. Ripples seemed to capture my mind’s eye better. But they are too transient.

I wonder, is it better to be the flat stone skipping wildly along the surface, leaving a trail of ripples in it’s wake? Or rain showers, disrupting the entire surface of water for a short spell? I rather prefer the less poetic thought of a clunky chunk of dislodged sedimentary rock Ker plunking into the depths. A great big splash, loads of spray jettisoning from the site of impact, endless ripples radiating from the point of impact. The big chunk hitting bottom with a bilious thud, the geography of sand and sediment altered.

I achieve more peace thinking about Meg’s journey that way; that everyone needs to be a little displaced by her. Every parent wants their child’s life to have meaning, there’s just more urgency now. Her struggles should be pondered, her triumphs celebrated. Long after this is “over,” our worldview should remain shifted.

The real tragedy lies in our forgetting.

All Things Practical

Nearly a month has passed since my last post. Many times, I fear I may just be repeating myself, more times than notI'm blankly staring at a blinking cursor before logging off. As we near the half way point of Meg's treatment, it's appropriate to review the practical aspects of Meg's life, care and prognosis.

On the forefront of our agenda is addressing Meg's rehabilitation efforts. Earlier in the summer, Ed and I were considering the potential benefits of pursuing hyberbaric oxygen treatments in the hopes of expediting her physical rehabilitation. After conversations with several of her doctors, we have decided not to pursue this option in the short term. The cons outweighed the pros.

Our recent follow-up with our Pediatric Medicine and Rehabilitation doctor, has us pursuing another inpatient stay at Children's Hospital. Our goal would be to go for roughly 10 days between rounds of chemo. Meg's "B" cycle of chemo, which contains the drug Cytoxin, really gave her a run for her money. We noticed a definite decline in her balance, strength and overall coordination. It was after this cycle of chemo that she needed a brief hospital stay for a blood transfusion. The subsequent round of chemo made Meg neutropenic for roughly 12 days. A very tenuous 12 days - for all of us. The looming question is whether or not the insurance company will approve this short of a stay. The reasoning is the duration of stay isn't long enough to rebuild her endurance and achieve her short term rehab goals, thus not justifying her stay.

Of course, the other component to another inpatient rehab stay is the impact on the family. I know it would achieve so much for Meg, but there's no denying how difficult 10 days in the hospital will be on us. Quite frankly, it seems we are still recovering from her long initial three month hospital stay. If this hospital stay does not get approved, we will wait until after she is off treatment and then go back in for a longer stay; probably next Easter break.

After we left this exhaustive consultation, I felt oddly defeated. I love our PM&R doctor, he's a great listener, we are on the same page; he's a highly regarded physician. I had even considered another inpatient rehab stay prior to the appointment, so when he broached the subject I was initially thrilled. My feeble explanation to Ed: this appointment was another confirmation that Meg's struggles will continue well beyond our treatment.

In the meantime, we've been trying to enjoy our summer amidst four physical and occupational therapy sessions, up to two tutoring sessions and reflexology/massage appointment weekly. She loves her therapists and tutor, but really can't wait for her weekly session with Eva. This is such a benefit to Meg. Given her limited mobility, these appointments help increase circulation, moving the chemo toxins through her system faster. The best benefit? She's completely relaxed, asleep after the first 10 minutes! It's a hoot and really does bless and calm my nerves to see her so at peace.

We have also tried to make our backyard a bit of an oasis for our family. We now have a patio swing with an awning, which helps her time outside on sunny days to be more comfortable. We hung a couple of flowering hanging baskets outside her bedroom window and around the backyard. And through the generosity of a local business and friend, we were able to have a small above ground pool installed! It is really amazing to see how improved her balance and gait are after some time in the pool. And we have it right in our own backyard! This has been the most wonderful blessing for entire family.

We are a week away from our fifth cycle of chemo. All chemo stays for Meg are started with a couple day inpatient stay, followed by two weekly clinic visits, then the dreaded drop in her blood counts. We've adopted a bit of a pre-chemo ritual the week prior: blood work, audiogram, cram in as much fun with a movie, swimming, walking the dog, trip to her favorite ice cream shop. Next on Meg's list of things she wants to do is go on a boat! Consider it done, Megs! Your cousins are on the task!

Look for some summer fun pics soon. (I have to be sneaky, Megs loathes having her picture taken.)

"Trust In God"

"Trust In God" or "Trust in the Lord." You can find these statements in many places. What do they mean? Trust in God that nothing bad will happen? That if bad stuff happens, He'll be there to see you through it? If He let the bad stuff happen, how is He "seeing" us through it?

Trust in God for what exactly? What am I trusting God to do? The phrase itself exposes the limitations of the human intellect. It's as if we need to reassure one another through this most inadequate phrasing that God is in control. If one chooses to believe in God, the Father Almighty, and comprehends the meaning of the word Adonai, then "trusting" becomes moot.

Yet because of my human limitations, and now that I am truly challenged in my relationship with the Lord, I do call into question how I "trust" Him. What exactly is the nature of our relationship? If I trust he is in control, then why does he let these horrible things like diseases afflict little children? Sin. Yeah, yeah, I know. Big, fat flippin' consolation when it's your child afflicted! If I really spend lots of time believing that God is I AM, I don't know that I like Him very much right now. And before everyone gets there catechism all in a bunch, I am allowed to dislike God. He is immutable, therefore a testy mom from Detroit cannot diminish Him.

The best answer I can come up with is perhaps we need to remind ourselves to trust Him as a means to reinforce our faith. Bad stuff will happen to you, to me, our families. So what do we do with our faith, with our relationships when things go south? Reinforce our faith through prayer, time in the Word, communion with fellow believers. So much easier said than done. When you are raised to view God as your Heavenly Father, catastrophe turns your perspective of Him on it's ear. Why would my Father allow harm to come to my child? Does He allow difficulties and tragedies in our lives to refine us, bring us closer to Him? I don't know about you, but couldn't He have just had my dog run over by a car? That would have been sufficiently attention grabbing.

So, here I am at 2:00 a.m., unable to sleep, listening to my daughter stir restlessly. I have this white hot glowing orb of anger lodged in my gut that won't dissipate, my family is at the point of fracture and I have a choice, but not really. You see, despite all my rants, I still believe in God and my salvation through our Savior, Jesus Christ. Perhaps, I'm just not ready to let go of Meaghan. To really let her go into her Heavenly Father's hands. As her mom, I think I can care for her best, but as a mom I focus on her temporal care.

I guess I'm just not ready to let go, but I know once I do I will be awash in peace. It's okay if I'm not ready yet. When I am, I know He'll be there.

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!!