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.

Friday, December 24, 2010

This Christmas Eve


Where a year will take us! I know my posts have been less and less frequent as time has passed. Forgive us, we've been busy helping Megs battle the beast.

At this Christmas Eve we are preparing to celebrate at home together! Truly that is gift enough in itself. I am keenly respectful how precious it is. We've mourned the loss of so many, many children this past year. Our family has also lost Ed's father in the spring and on December 22nd, my dearest Gramps passed away.

As Megs moves closer towards her final planned round of chemo in late January, we cautiously hopeful that she can move away from battling and begin the long, slow journey of healing. As a family, we need to move toward healing together.

Again, we are humbled by the outpouring of support we have received from complete strangers. Folks have taken it upon themselves to make our burden lighter this season. I still don't know quite how to adequately express our appreciation. I doubt I ever will.

Instead, I'll do something better: share pictures of the shy gal who motivates us all to work harder; live more full; love more sincerely... Merry Christmas!

Thursday, November 25, 2010

Happy Thanksgiving 2010

Happy Thanksgiving!

It’s so difficult to believe where we are a year later: Meaghan is talking, using a walker, attempting visits to school. This time last year, we hadn’t even begun her radio chemotherapy let alone her nine cycles of “maintenance” chemo. God willing, we only have two cycles remaining!

Those of you who have been following Meaghan closely are aware of her numerous and lengthy unscheduled hospital stays for a myriad of chemo related complications. There have been weeks at a time filled with uncertainty, fear, bitterness. It would be lovely to say those times are forever behind us. I cannot make those guarantees for my daughter or my family. I can say with certainty that our lives have been deeply enriched by this experience; this experience that I would not wish on my mortal enemy, let alone my baby girl. Our lives are now filled with a growing family, our Cancer Family.

We grow to love these children and their families as our own. We follow their stories, rejoicing and grieving with them. It’s a different life now, a more painful and joyful one. Sometimes Ed will walk in the door after work, we’ll fall into a deep hug and I can only utter a name repeatedly: Brendan, Max, Lyssie, Michael, Nate, Charlotte, Noah, Emily, Samuel… These represent only a fraction of my “other children,” but when they are struggling or worse, have passed away, I feel the pain so deeply.

Despite all the pain our warrior children endure, our lives have indeed been enriched and blessed by them more than I could have ever thought possible. And I am thankful for each and every one of them.

Meaghan’s treatment comes with no guarantees. She could relapse or recur at any time. She may or may not win the battle. She may or may not go to college. She may or may not live a “normal life.” Right now, we feel she is doing beautifully. Sure, she can’t make a decision to save her life, literally. Sure, she can’t toilet by herself or walk or run or jump or spell her last name. But! But, she can laugh and eat; snuggle with her puppy and swim and ride her special trike and play Barbies and boardgames. She can hug us; tell us she loves us. She can remember things that make her happy or sad. She can get excited and motivated about things she wants to do or places she wants to go. She can handle three hours of consecutive therapy for three days a week and still come home wanting to play. She can ask us to snuggle under the covers with her and read with her. She tells her brother and sister she loves them and they reply in kind.

How can we not be filled with thanksgiving with a life like this?

So on this night of Thanksgiving, feel with gratitude the breath you are able to take into your lungs. And tell someone you are thankful for them.

May God bless you!

Saturday, October 16, 2010

Riptide

It’s been three months since I’ve last posted a blog entry. I’ve avoided blogging for so many reasons, but mainly because I feel I have nothing therapeutic to say, nothing profound or helpful. I’ve been so angry and hurt. Honestly, I’m tired of repeating myself: Don’t forget any of these children’s battles! Don’t let any of these children suffer in vain!

I’m angry because in two months I’ve followed families as they have said final goodbyes to their sons and daughters; little children who have all died from cancer. There’s nothing eloquent to say about the passing of a child. I’ve wept as I’ve read about parents’ anguished cries to God. I just can’t get past how arbitrary it all seems. Why one child and not another? I cannot even continue that line of thinking; it darkens my soul.

In these past months Meaghan has logged nearly thirty days in the hospital; 19 day consecutive. She’s had fevers, gastric paresis and delayed emptying, staph infection, numerous platelet and blood transfusions. She even has a chemical burn on her bottom from diarrhea during a round of chemo. While enduring long stays, she’s wept herself to sleep from boredom. We’ve played innumerable rounds of Uno, Memory, Zingo; colored countless pictures in coloring books. We’ve memorized the Disney Channel lineup and watched our favorite movies until we can nearly recite the scripts verbatim. This is the profile of a medically institutionalized child.

After the tedious 19 day stay, Ed and I decided to delay a round of her chemo by one week. I am focusing on all the wonderful things Meg was able to do: swim in the late days of summer; ride her tricycle; hold her puppy’s leash as we push her in her wheelchair; attend physical and occupational therapy sessions. Meaghan was even able to attend the first three days of school!
Meaghan’s stamina and resilience continues to astound me. I watch her tiny body literally being destroyed at a cellular level, so ill she can barely lift her head off the pillow. But then, her body starts to recover and BAM! She wants to play games and Barbies and go outside. The highs are so exquisite, the lows debilitating. I wish I could report that the rest of our family recovers as quickly as Meg does.

As I’ve said before, cancer is a family affair. Maddy and Ethan worry so over Meaghan. It’s a perverse world we live in when brothers and sisters ask about blood counts before they ask if they can have a friend come over. Truthfully, Madison and Ethan have stopped asking if friends can come over. Even for them, Meg has spent too much time in the hospital to jeopardize exposing her to some hidden germs. Ethan no longer asks how many days she will be in the hospital, but rather asks how many weeks.

Stability in the home has flown out the window. Our home life is very often tense. We seem to have forgotten how to be together under one roof. Daily questions are no longer, “What’s for dinner?” but rather, “Will I see you tonight? Who will pick me up from school? Can we see Meaghan?” Our sleeping arrangements shift also. When I’m home, one of the kids sleeps with me and the other will sleep in Meg’s bed. I don’t think it’s solely for their benefit anymore either. I miss being with Madison and Ethan. I am missing this phase of their youth, Hell, they're missing it, too! The ugly truth: I miss being with my healthy children. Ugh, what an awful admission, but there it is nonetheless.

Many people exclaim, “I don’t know how you do it! I could never do what you do!” I don’t do anything. I tread water. Watching a child go through treatment is like being caught in a riptide. After the initial panic and instinct to swim toward shore, you quickly shift strategies and swim parallel to shore. And just when you think you’ve swam a safe distance, shoreline within reach, you get sucked back out!

We are just trying not to get stuck in the undertow. For now, if we can at least see the shoreline, see that we might have a shot at land, then we can keep the panic at bay.

Sunday, July 18, 2010

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.

Monday, July 12, 2010

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.)


















Friday, June 18, 2010

"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.


Tuesday, June 8, 2010

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.

Tuesday, May 11, 2010

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**

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)

**Engage*Inspire*Love**

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!!


video

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.


Monday, March 15, 2010

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.

Wednesday, March 10, 2010

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.

Saturday, February 27, 2010

Rally the War Cry

Meaghan came home from the hospital yesterday. The very abbreviated version of what her new complication is: her stomach doesn't empty and she has bad reflux. This is like a torturous, never ending game of Clue. The problem is all the characters are conspiring together. Posteria Fossa Syndrome - check. Radiation - check. Chemotherapy - check. Assorted Pharmaceuticals - check.

Together with her team of doctors, nutritionist, pharmacist and dietician we adjusted some of her meds, added some new meds and administered a lower volume dose of chemotherapy. Some of these news drugs will cause more diarrhea, but will hopefully restore stomach motility. If the new meds work then Meaghan can avoid having her G-Tube pushed down into the top portion of her small intestine. (By moving the feed tube, we bypass the stomach and administer nutrition directly into the intestine thereby increasing rate of absorption and avoiding vomiting.) We are following up with her pediatric GI doc in two weeks to make that determination.

This was a particularly taxing and scary week. Meaghan was not well at all. She's lost a bit more weight, when there wasn't any to spare. She was very dehydrated. Slept all the time. If these decisions to change aspects of Meg's care sound as though they came easily, they most certainly did not. Ed and I had a conference with her oncologist - a long one. We cleared the air, set the tone for future communication and reestablished rapport. Not an easy feat. I am a watch dog of a mother; a control freak bar none. I am keenly tuned in to Meg's health. The oncologist expects a level of trust that I'm simply not willing to give - yet. Until the bitter end, I will second guess every decision we make. If I struggle trusting my own decisions, I'm sure as hell not going to trust anyone else's. We compromised. I will relax, if he in turn will respect that I will not accept out-of-pocket his decisions. He must explain himself fully and to my satisfaction. I get that I'm a fast learner and relatively intelligent. Yet despite my newly acquired medical lexicon, I am not a doctor.

I am a terrified mother.

I am a terrified mother committed to balancing my daughter's quality of life with her morbidity.

Yes, I've gone there. The more fearful the decisions or situations, the more committed I am to facing them squarely. The entire Pediatric Floor is aware of this. All our family and friends need to know and trust that we are asking an endless number of questions. Meaghan's situation doesn't allow for a simple fix. To borrow two phrases I hate: she is too multi-factoral and poly-pharmaceutical to treat in black and white. At this stage of the game, to question us is to culture doubt and fear when it already clouds our lives. Everyone so loves Meaghan and is invested in her recovery, but no one more than her Mom and Dad.

We desperately need continued support from our friends and family, however. We need unceasing prayer and patience. We need unwavering support as we face unthinkable scenarios and decisions. In light of this last week's events, I have a very specific request.

I need to rally a war cry. Whether you know Meaghan personally or through her blog, I am asking everyone out there to post what song comes to mind when you think of Meg and her daily heroism. Please indicate the song title and artist. My goal is to make a CD for Meg to share with her all the support and love she is receiving from her extended family.

Please say an extra prayer for all parents of children with cancer. We are foot soldiers together.



Monday, February 22, 2010

Back Again

Meaghan was seen on Wednesday, February 17th for her first inpatient chemo maintenance cycle and discharged Thursday. Meaghan was readmitted on Sunday for dehydration.

I wish it was as simple as dehydration, but there are larger issues at play. Her GI track is a mess. Why? Well, that's very hard to say. Meg is what the medical community calls "multi-factoral" and "poly-pharmaceutical." All of which is a fancy way of saying, "We don't know exactly what is making her sick."

I certainly have my strong suspicions about what set this in motion. The long and short of it is we need to determine what her GI motility is. Some of her chemo drugs could have damaged her intestinal motility and caused the neuropathy we are seeing in her legs. In addition, she is on a high dosage of magnesium because Cisplatin is known to cause hypomagnesmia.

At this point, Ed and I are looking at all of our treatment options for Meaghan. Our current line of thinking is to suspend the chemo until all testing results are reported.

Please pray that the Lord will protect Meg's body. Please pray that the Lord will direct Ed and I to make the best decisions possible for Meaghan; that all her medical staff will work only towards Meaghan's benefit. Trusting in the saving grace of Jesus.

Sunday, February 14, 2010

Twilight Zone

Alrighty, I've official taken up residence in the Twilight Zone. This emotionally and mentally taxing past week was topped off with a dollop of the absurd.

On Friday, after settling Meg in bed after her MRI, I crack open a Mike's Hard Cranberry Lemonade. (It's after 1:00 p.m., after all!) I'd had enough, Meg had had enough. The week was more than a bit exhausting. I'm sitting at the kitchen table, chatting with my mom who had stopped by with some groceries before picking up my older children from school. As I near ending the recount of the week, my phone rings. It's Ed.

He's on the other end telling me he is at the nurses station at work in excruciating pain. It appears to be his left kidney. His blood pressure is sky high. They are transporting him via ambulance to Detroit Receiving Hospital.

My response? Not loving concern, I tell ya! "You're joking, right?" Ed says, "No, I'm really not well."

"Oh, okay. Let me figure out what to do with the kids and I'll come down." I meet my mom's concerned gaze with a look of incredulity, quickly recounting the conversation before dissolving into a fit of hysterical laughter. My mom is momentarily alarmed before she realizes that I am really and truly laughing! I almost wet my pants, doubled over in laughter. It's absurd! The whole thing - all of it!

After arranging a ride home for the big kids, I kiss Megs and head downtown. While navigating the horrendous parking at Detroit Receiving, I'm still chuckling. By the time I arrived, Ed was eager to bolt out the door. He was already feeling better. The lab work didn't provide enough clinical evidence to warrant further testing. Soon enough, we were on our way. In typical man fashion, Ed isn't very inclined to follow-up with our primary physician. I guess, we'll just have to wait for another suspected kidney stone incident!

Silly me, I thought the strain of the week was behind us! But, no! Saturday morning brought a minor tragedy to our home... Madison found her pet hamster, Taffy, dead! There was much wailing and hand wringing. I did my best to console her. After all, Taffy died in her sleep. She wasn't in any pain. Taffy was a good momma hamster and a very sweet pet, but Madison's mourning was softened by the lure of picking out a new baby hamster. Saturday afternoon we welcomed Athena into our home.

Yeah, yeah, I know... But these are unusual times and I'd had enough drama for a lifetime. If a new baby hamster buys me some peace for the weekend, then so be it. Here we are at the start of a new week. I pray it is a relatively uneventful one. Who's with me?

Friday, February 12, 2010

What's In Your Wallet?

During the past week's follow-up appointments, testing and pharmacy runs, I've noticed something unexpected as I filled out reams of paperwork regurgitating Meaghan's medical history. My wallet configuration is different. The first three cards are my I.D., our primary insurance card and Meg's Children's Special Health Care Services card. Before cancer, I'd have my I.D., debit card, library card, assorted frequent shopper's cards, etc. And somewhere, buried in a slot, health insurance cards were collecting dust.

Staring into my purse, I wondered: What does a person's wallet configuration say about his/her lifestyle? How is his/her life organized? If money makes the world go 'round, what's got him/her spinning in him/her orbit? In the countless trips along I-94 to Children's Hospital, I pass the Lotto jackpot totals. There used to be a time I would daydream about what I would do with a fraction of that kind of money. Nothing ever lavish. Simple things like get out debt, set aside money for kids' college tuition, take care of our parents, charitable contributions, travel. I rarely fantasized about material acquisitions, mostly about the comfort that financial security brings.

Passing those billboards now, I can't even muster a flicker of interest in what limitless wealth would mean. Funny, come to think of it, I don't daydream anymore. Since I was a small child I was always focused on what comes next. Never content in the moment, always future focused, the consummate planner.

My mom frequently asks me what's on the agenda for the next day. It's her way of asking what I need from her. The question perplexes me. I try to wrap my brain around a plan of attack, a strategy for meeting the coming day with purpose and productivity. Instead of action items, my mind empties and my ears swoosh-swoosh. You mean there's a day after today? It's unseemly to think about a moment beyond the next.

Does my inability to manufacture a dreamscape mean I've mastered the art of the present? I don't know. I am certain my happiness comes not from what will be, but what is. That much is different. My joys now are watching Meaghan stroke Ethan's head as he crawls beneath the covers with her; standing at the sink, washing dishes while listening to Meg laugh as Daddy tickles her. My satisfaction comes from feeling Madison relax into my arms after a rough day at school, giggling that she can barely fit her head beneath my chin. And my happiness is seeing our silly Golden Retriever do a full body wag of delight upon seeing me.

Perhaps living in the moment really means releasing the future from our own limitations. Perhaps, if we allow, the joys of the present outweigh our perceived fears of the future. I feel tremendous relief being released from a mind, momentarily, no longer obligated to preconceive. Our family's future has an ending yet unwritten, completely blank for me. And I'm not so afraid.

I orbit my family. No need anymore for shooting stars or streaking comets. Just the joys and sorrows lived between each sunrise and sunset.

Out of Gas

We are ending a long week of testing, follow-up visits, and therapy with a complete spine and brain MRI. As I wheeled Meg down the hall to the MRI sign-in desk, my stomach lurched. I flashed back to our first MRI: The One That Started It All. I had to fight the urge to turn and run.

After much discussion with Meg, she decided she did not want her port accessed. So little is within her control, I felt it important to respect her decision. It took four of us to restrain her while we gassed her down before putting in her peripheral line for the Propofol. I wish I could say this is her last MRI, but we will be repeating these every couple of months. Perhaps next time, she'll choose to access her port. I'm angry and sickened that one of her last conscious moments with me I'm forcing a mask on her face as others restrain her thrashing. I can't, however, bear the thought of strangers sedating her without me there.

Earlier in the week we met with the surgeon who placed her G-tube. We've made arrangements to switch her G-Tube over to a MIC-button in early March. We also started her on Reglan to see if that would reduce the frequency of her vomiting. (So far, no luck with that.)

Meaghan will have frequent audiograms as well. Hearing loss is expected with the radiation and the chemo drugs. Every third cycle we will repeat audiograms, MRIs in addition to the frequent blood work. Her current audiogram shows normal hearing.

We also had a follow-up visit with her Pediatric Medicine and Rehabilitation doctor (PM&R). While great improvement is celebrated, he is already noting neuropathy in both legs through the Achilles tendon. It is difficult to determine if this is solely a result of the chemo or craniotomy. In all likeliness it is from both. The neuropathy is likely to worsen as she continues to receive more Vincristine. It is too soon to say if this will be permanent. Regardless, she will have weakness permanently. We will follow-up with PM&R in eight weeks. At that point, we will reassess her ataxia and determine if we will prescribe a drug for that. If the drug works, it may mean the difference between needing leg braces or not.

My conversation with our PM&R doctor was candid and refreshing. I respect his honesty. We decided to continue Meg on the Trazodone for sleeping. This drug is also a mild-antidepressant, so it's a two-fer. Our PM&R doctor places high value on the quality of sleep Meg is getting. My initial hope was to wean her off of Trazodone, thinking that once home, she wouldn't need the sleep aid. That did not prove to be the case. Her sleep at home has been broken at best. We increased her dose last night and she only awoke once! We all need our sleep if we're going to get through this with our sanity intact.

Our PM&R appointment was difficult for me. I flashed to a future of Meg in leg braces. While cancer has stained our lives, it's a silent, nearly invisible partner. Leg braces would be a constant visual reminder of her story. For my painfully shy girl, it makes her an easy target for more speculation, gawking and general social insensitivity. Despite my fears, I try to refocus myself on my response to the doctor, "Here with us and weak is better than the alternative."

With the weekend ahead, we are looking forward to a respite from all the appointments. We hope to re-energize before blood work on Tuesday and our inpatient stay starting Wednesday. The whole family is a bit on edge as Wednesday inches closer. Please pray for peaceful minds and hearts for our family.

Saturday, February 6, 2010

The Getaway

Early February isn't exactly prime tourist season for scenic Traverse City. Early February in Michigan isn't exactly prime time to do much of anything outside of hunkering down under lots of blankets, unless you have a young family with lots of energy to burn.

So, after receiving the green light from Meg's oncologist, we loaded the car and headed north to Great Wolf Lodge. This family trip required some additional equipment: wheelchair, Zofran, feeding pump, feed bags, lots of Pediasure and Duocal. Once we played Tetris loading our bags and equipment and three very excited children, we hit the road.

We have never before been to Great Wolf Lodge. Our room was amazing: a balcony, fireplace, kitchenette and loft. The water park was seasonably crowded with young families. Despite the chaos, Meg managed to attract a bit of attention in her canary yellow wheelchair and bald, little head. Thankfully, children have short attention spans and the lure of the water park quickly diverted their gazes.

So much about Meaghan has changed but she still loves swimming. Though no longer able to swim independently, her joy was not dimished. Snugly strapped into a life vest and secure in her parents' grasp, Meg stretched, kicked, splashed and laughed herself giddy. She chased Maddy and Ethan around the pool. She water-skied with Daddy and jumped up and down with Mommy. Ed and I begged Meg to take breaks from the pool. Her compromise was to let us "swim gently" with her. That's what I enjoyed most; feeling her head against my chest, watching her legs moving rhythmically through the water.

Meaghan was completely happy. In the water, she didn't notice people staring. Her limbs moved freely, unfettered by ataxia. In the humid, chlorinated air, amidst the boisterous screaming and laughter of children, Meg rejoiced in her body's abilities. She was normal in the pool.

Aside from therapy at Children's Hospital, we haven't been in public a lot with Meaghan. Children's reactions to Meg are fairly consistent: bewildered staring. Adult reactions generally fall into three categories. Some adults are so oblivious to their surroundings they cut in front of her wheelchair and don't hold doors. Some adults stare at us with a mix of fear and pity, with this odd head tilt that conveys, "Oh man, cancer AND in a wheelchair?!" The remainder meet your gaze, return your smile and offer basic courtesies. I'm saddened to report there a few that fall into the latter category.

The excursion was unexpectedly difficult for me. Outside of the pool, it was difficult for me to be happy. The trip, while "free," came with a high price. We were there because of one reason. And there's just no escaping it. You can ignore cancer only for a very short while. So, when I remember this trip, I work hard to remember Meaghan's joy. She didn't care why she was there. She was just plain 'ol happy and busy having fun!









Tuesday, February 2, 2010

A Quick Update

Greetings Everyone! We've been doing what I'd hoped for: having fun!

Since Meg's been home, we've adjusted to new room assignments and new schedules mostly in stride. Ethan surrendered his bedroom (next to ours) without complaint. His room has been defrocked of all things boy and baseball. The room is now appropriately girly.

Meaghan and I have met our new PT, OT and Speech therapists. They are all wonderful and have quickly worn down Meg's shy defenses. It's a new and exhausting schedule, but as always the therapists make the hard work fun. I have to admit, I'm lonely during the busy days. While we were inpatient, I could chat and visit with various staff members. Now, well, it's just me and Meg. And on her best days, she's not chatty. Don't get me wrong, I am so thrilled to have our whole family together again, it's just another adjustment for me.

We've had to make other changes in our life, too. A larger vehicle became a necessity to accommodate Meg's travel feeding pump and wheelchair. While getting into a larger vehicle was a need and not a want, the staff at Buff Whelan made the experience very smooth. Our salesperson was phenomenal, she took care of everything.

This past weekend we were able to take advantage of wonderful opportunity. Thanks to a relationship between Children's Hosptial of Michigan and Great Wolf Lodge, children with life threatening illnesses and their families are able to spend two nights at the Lodge. We had a blast. I look forward to sharing pictures and thoughts about our wonderful family getaway very soon.

In the meantime, here are some great shots of Meg in the therapy swing. Sure, she's having a blast, but more importantly, the therapists were astounded by her endurance. They assured me that she was really giving her core muscles are serious workout.

Tuesday, January 26, 2010

Musings on a Day by Ethan Moleski

**Please welcome our guest contributor, Ethan Moleski.

Today Ethan was not at school for lunch because Ethan was not feeling good. And when Ethan got home Meaghan was so tired that after dinner she was on the couch like a bunny in the winter.

She wanted to play Littlest Pet Shop and Ethan had to play it with her, but it did not last that long so then mom and Meaghan were asleep before you knew it and that was that.

Then Meg had a bubble bath and she liked it and then Ethan had dessert and he like it.

And the family got kaleidoscope glasses and when you look at Christmas lights you will see something and it will be cool.

Saturday, January 23, 2010

Home Sweet Home

January 21, 2010 marked a new day in our journey with Meaghan. The day we came home, reuniting as a family. The days leading up to Meg's discharge were filled with countless highs. Monday was our last dose of Vincristine for four weeks. Tuesday was our very last day of Radiation Treatment and our last regular ambulance transport. Wednesday morning we removed access to her port for the next month.

This past week was filled with countless preparations: duct work cleaning, carpet and furniture cleaning. Wednesday the medical supply company delivered all of her equipment and supplies. That afternoon some of my girlfriends descended on my home for wall washing and vacuuming and general organizing. We ate, cried a little and laughed a lot!

On Discharge Day, Madison and Ethan received a special exemption from the hospital H1N1 restriction policy. They were allowed to come up for one hour to see where Meg has been living for the past two months, meet the Inpatient Therapy team and tour the therapy rooms. Their reactions reminded me of my own sense of trepidation.

This place that I initially hated coming to daily, this place that was foreign, a constant reminder of my daughter's illness has now become filled familiar faces and routines. Our partings with the nurses, PCA's, doctors, therapists, social worker and clinical manager were not as bittersweet as they could have been. Meaghan will be continuing her outpatient rehabilitation at Children's hospital. She will have PT, OT and Speech therapies three times each per week.

I am looking forward to returning to our therapy sessions. We will frequently be able to visit the friends we've made at Inpatient Rehab and show our progress. We will be able to visit with our transport crews. They will continue to be a part of our journey, as will all our Radiation support staff when we return to St. John's for inpatient chemo stays.

We shared so many intimate family moments with our new "family" that I cannot imagine moving forward without their continued support. So with their blessing, love and devotion to our Meaghan makes her homecoming sweeter.

And her homecoming has been sweet. To date, it's been without medical incident. We've had our first visit from our palliative care nurse. Pastor paid a visit and had Meg in stitches as usual. (He's one of her favorite visitors.) Cousin Mary was in town and played with Meg and painted Maddy's nails. Aunt Tracie stopped in for a quick visit, too. All in all, it's been a busy, lovely weekend, with Sunday yet to come!

Meaghan is so reluctant to visit school or church. She's nervous to have friends visit. Interestingly, her speech started to return this week prior to coming home. Each day she speaks a bit more confidently, but as always, only on her terms. Her voice is small, restrained, uncertain. Much like how I feel about facing each day.

I'd like to end by sharing some pictures of Meg taken during the last couple of weeks:

Here's Brian (just one of our beloved Transport crew). On Meg's last day of radiation, he filled the back of the ambulance with balloons. We all wore Dora hats and sunglasses. All of us, but Meg that is.

This is Meg working on her Beads of Courage. It has been a wonderful tool to facilitate conversation about all she's been through. It is truly something to behold.


This is Meg working hard with Joy, one of the Physical Therapists. Despite all the hard work Joy requires of Meg, she always makes sure Meg has time for some fun games too.


This picture represents just a handful of medical personnel that cared for Meg during her radiation treatments. Pictured (starting left front) are Vicki, Cynthia, Kelly, Me and Sue. And these fine ladies are only a fraction of the whole team that has treated Meg over the last six weeks. We all shed some tears, but again, we'll get to see one another soon.




Everyone involved with Meg's care wants nothing more than to have her home with her family, despite their emotional attachments to her. We all shed a few tears, but more importantly, we rejoiced in Meaghan's amazing accomplishments and courage.

Throughout this journey, God has seen to it that we were blessed with caring, loving staff. Praise the Lord for blessing their talents!

And welcome home, Meaghan!!

Sunday, January 17, 2010

The Countdown

We are four days from discharge. It's 2:30 a.m. My night at the hospital. I wake to check on Meaghan because she is stirring and moaning. Somehow, during all her tossing and turning, she's compressed her feed tube enough to cause leakage at the coupling site. Her pajama bottoms and bedding are wet, but she sleeps through it.

After tucking some dry sheets beneath her and refilling her feeds with a calorie dense powder, her line occludes. The pump bleats it angry warnings. We change the feed bag and lines, turn on lights, check her tube site. Meaghan sleeps through this all.

This past Wednesday, we had our family meeting with the doctor, clinical nurse manager, social worker, program coordinator, and physical, occupational, speech and recreational therapists. She will come home with a hospital bed, bedside commode, wheelchair, walker, bath/shower transfer seat, feed pump, pole, and feeding supplies. We will also receive palliative support.

As the glare of the netbook screen illuminates this little corner of the hospital room, I rub down my face in exhaustion. This is going to be a full time job. Meg will require outpatient OT, PT and Speech three times each per week. How much improvement can we gain before maintenance chemo starts? Now that she has some fine motor skills, how do I fold in academic needs?

I am mom, substitute teacher, substitute therapist, home health care provider... And this is just for Meg! It's no wonder I'm filled with apprehension. The issue that is raising my irritation now is not only is Meg saddled with being an oncology patient, she's also a rehab patient. Why the double whammy?

Despite all this, I don't feel sorry for our family. I certainly feel we are being challenged, but I don't hang my head in pity. Maybe I should feel sorry for us, but really, let's look at the facts: my children have a mother and father who love one another, we have a roof over our heads, food in our bellies, reliable cars to drive, clothes to wear and fun toys to play with. My husband is employed and blessed with amazingly empathetic managers. We have a supportive family network and a very broad, supportive network of friends and church family as well.

Meg is the drum major for her own marching band of supporters: fiercely devoted ambulance crews; caring and nurturing medical staff at radiation; therapist "friends" who encourage, support and challenge her; nursing staff, social workers and doctors that go beyond caring and are invested in our family; prayerful family, friends and strangers... Truly, the blessings outweigh this curse.

While we feel a healthy amount of fear in bringing her home, I also know we are not alone. We never were.

Monday, January 11, 2010

Looking Back

The Child Life Specialist at Children's introduced a program to us called Beads of Courage. The program is used to track their treatment journey using beads as symbols of their accomplishments and courage. We've been in hospital for quite some time already and our CLF wanted to get Meaghan all caught up on her beading.

It's pretty amazing, everything she's been through these past 68 days. Once we are all caught up with our Beads of Courage I will post a picture of her necklace.

Here's the breakdown of bead colors, corresponding procedures and how many Meg has accrued.

Beige=Bone Marrow Aspirate/Biopsy 1
White= Day of Chemo 5
Orange=Port Insertion and Removal 1
Blue=Clinic Visit 0
Magenta=Emergency/Ambulance/Unusual 25
Silly Face= Hair Loss 1
Lime=Isolation/Fever/Neutropenia 1
Tortoise=Lumbar Puncture 1
Purple=Morphine/Dopamine/PCA 15
Silver/Black= Pokes 15
Glow in the Dark=Each Day of Radiation 24
Light Green= Tests/Scans/etc 8
Red= Transfusion 1
Aqua= Tube Insertion 6
Yellow= Each Day of Hospital Stay 68
Dark Green= Stem Cell Harvest/Dialysis/TPN 0
Silver= Surgery & Dressing Changes 4
Square Heart= Transfer to PICU 1

Yesterday we took Meg home for several hours. The kids fought with each other, played with each other... It felt a little normal. Bringing Meaghan home will be difficult for everyone. The hospital is safe, controlled. Meg isn't just a cancer patient, she's a rehab patient with significant physical limitations. Our family will undergo another period of adjustment, but right now I'll just focus on enjoying all being under the same roof! Even with all the sibling squabbling.

Before I forget, I'd also like to report some good news: Meg's weight is up from 19.1 kg to 20.9 kg in one week! I wish she were eating by mouth, but she's getting balanced nutrition and hydration through her tube. For now, I can table that fight.







Wednesday, January 6, 2010

Our Meaghan

The time between Christmas and New Year's was a time-lapsed sequence; seamlessly disjointed from reality. I wonder if that's how the past two months have felt for Meaghan. Her sense of the passage of time, until recently, was suspect. This week, however, she caught up with us.

New Year's Eve is Ethan's birthday. My mom spent the afternoon with Meaghan so I could join Ed, Madison and some friends for a couple of games of bowling. The four of us then went home for Ethan's traditional birthday dinner of Chinese food. I was back at the hospital by 7:00 p.m. As I tucked Meg into bed, I told her she would be coming home for a visit in the morning and we could sing Happy Birthday to Ethan.

She slept fitfully that night. In the morning, she was pale. Not long after she vomited. The day previous she struggled with diarrhea. I had to tell her she would not be able to go home for a visit. She shed a few big crocodile tears and hoarsely choked out, "I want to go home."

We were able to come home for a visit this past Sunday. She enjoyed beating the four of us at Uno, watching Ethan play Wii and just enjoyed being at home. On Monday, the waterworks started. Upon return from radiation and chemo we normally rest, watch TV or play a game before therapy starts. Instead, she sat facing the door and cried.

Once I ascertained she wasn't in pain, I went through all the regular questions: "Do you want Daddy or Ethan or Maddy or Nonnie or Poppie or Ribby or Jara?" "Are you angry?" "Do you feel sick?," etc. She just kept shaking her head "No." Finally, she pointed to herself, then pointed to the door. I asked, "Do you want to go home?" A vigorous nod "Yes," followed by heavier crying.

She wouldn't let me hold her, stroke her, kiss her or comfort her in any way. Nor would she let me sit on the sofa. She insisted I sit silently with her on the bed. So, for 45 minutes I watched and listened as she sobbed. Afterwards, she perked up and happily went to therapy. She has repeated the crying spells each days since, sometimes twice a day.

We are at the point in her therapy where we need to assess if the medical gains we are making compensate for the emotional toll. Most certainly, she is making progress in her physical therapy. The ataxia (wobbliness) affecting the left side of her body, however, is impeding the rate of her progress significantly. Regardless, Meg will require long term outpatient rehabilitation.

Next week we will have a family meeting to discuss Meg's discharge plans from Children's. This is will be a comprehensive meeting to discuss her medical and rehabilitative needs, including equipment required to safely care for her at home (feed pump, feeds and supplies, wheelchair, bath seat, to name a few). We'll also need to adjust our living arrangements at home. Ethan will have to move upstairs and share a room with Maddy short term in order to have Meg on the first floor next to our bedroom and the bathroom.

Tentatively, she may be discharged on January 22nd. I hate to even put that date out there because so much can change so quickly. If this plan comes to fruition that will give our family three and a half weeks together under one roof before we start the 42 week journey of maintenance chemo cycles. Three and a half weeks to reintegrate her into the family. Three and a half weeks...

How much laughter and joy and love can we stuff into three and a half weeks? Let that be our challenge together!

Monday, January 4, 2010

The New Curse Word

Madison has declared "cancer" a curse word.

This morning we had to tell Madison that her friend's mother passed away on Sunday morning. Five weeks ago, this humble woman of uncommon integrity and faith was diagnosed with cancer. She was a devoted mother and wife, actively involved in her children's schools. She loved and served the Lord openly.

My heart aches for her family. My heart aches for what my faith struggles to reconcile. Why a loving mother? Why my daughter? Why these two who bring so much love into the lives of others? I don't have an adequate answer and even if someone did have the answer I'm not up to hearing it right now.

Yes, my faith is strong enough to find peace in the saving grace of Jesus. But tonight, my faith and my mind need to silently yield to my emotions.