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.

Thursday, December 31, 2009


It's that time of year again. Time for reevaluating and recalibrating our lives. By anyone's account 2009 is a year best swept into the dust bin: financial meltdown, unemployment, crime, war, etc. There's been a lot of talk about our society downsizing it's consumptive appetites in the wake of these domestic disasters. Time will tell if our "Back to Basics" outlook sticks or fades like a New Year's Eve Resolution.

Like many of you, I am adept at making and breaking those New Year's Resolutions, the reigning Queen of My Diet Starts Tomorrow, Master of Starting But Not Finishing Projects. (I don't even have Meg's first year scrapbook complete.) Somehow all the false starts haven't detered me from starting over.

But what about this year? Has Meaghan's cancer and rehabilitation given me steely determination to distill my life down to the essentials? Nope. I'm more worn down than ever. Depression and anxiety are my shadows. Sure, I pray almost constantly, love more fiercely, and release minor grievances more readily. To be honest, though, I miss the luxury of fretting over the little stuff because that means all the big stuff is in order.

The year 2009 is stigmatized for my family. And, let's face it, 2010 will be an odyssey as well. I don't have the stamina for another failed resolution this year. I can, however, do what I've done in all the years past. I can start over, day after day; if need be, hour after hour. I've watched our Meaghan push through circumstances that would have felled a lumberjack. She's the one in the family with real resolve. At any given time, Meg can refuse to go to therapy and stay in bed. She's entitled, yet she chooses to push herself daily.

Many don't believe in resolutions. I get that. But after spending nearly two months in the hospital with Meg, I think a simple resolution is in order for us all: Persistance.

May the Lord bless you with health and love in 2010.

Monday, December 28, 2009

Getting Stronger

Never underestimate the willpower of a five year old. After a particularly grueling night, vomiting and such, I was certain Meg would be too exhausted to go to therapy. Around 8:15 a.m., she starts pointing at the wall. After several failed attempts at guessing, I asked if she was pointing at the clock. She nodded "yes." Then, she pointed to the door. I asked, "Do you want to go to therapy?" She responded with a big grin. Within a couple of minutes her therapist walked through the door asking if Meg was ready to go! When did she learn to tell time?

Despite receiving all of her nutrition from tube feeds, plus undergoing radiation and chemo she continually amazes the staff with her stamina. She is starting to walk with assistance! She can also sit on a balance ball for a short time. She's mastered Uno Attack and thrills in beating Dad and her therapist. We also like to go to the playroom to play Jenga and paint. Her favorite trick, though, is that she's figured out to use the reclining features on her bed.

Last night I woke to something I hadn't heard in quite some time: "Mom! Mama!" Meg appeared to be having a bad dream and called out for me. Needless to say, the shock of hearing her call out for me jolted me awake. This morning I asked her if she remembered saying it and she nodded "yes." I asked if she would say it again and she shook her head "no." Perhaps she is anxious about trying to speak again. Who knows? For now, it's enough to know that her language is still intact.

Meaghan's days are busy enough to wear out the hardiest of adults, yet she pushes on. Ed and I are perpetually exhausted from our split schedules, but if Meg can meet the challenges of the day with eagerness, then so will we.

Sunday, December 27, 2009

Christmas Pictures

Please enjoy these few pictures from Christmas morning.

As you can see, we had a blast opening all the gifts! We are not accustomed to such fanfare and we were all wiped out afterwards, but the kids were up to the challenge.

In the short time from Christmas morning to today, Meaghan's hair has completely fallen out. She doesn't want to wear a hat and ignores us when we approach her about it. We follow her lead and it's a non-issue.

It's actually a bit of a relief now that it's all out. For a few days it was just in her eyes and mouth, down her shirt, sticking to her "G" tube. We changed pillow cases countless times during those few days. Meg does find comfort in the flannel pillow case she received from the IV team at the DMC and from St. John's. She gets colder more easily and seems to have a hard time maintaining a comfortable body temperature.

Meaghan has also been struggling over the past couple of days tolerating a high rate of hourly feeds. She vomited a couple of times. We were hoping to bring her home this morning but with her upset tummy, we decided to limit the excitement. We've reduced the rate of volume and run it continuously instead. It's a delicate dance, but we'll get there. I think the lower rate of feed allowed Meg to enjoy about 10 spoonfuls of a chocolate malt this evening. A huge accomplishment for her! Meg's even managed to gain a little bit of weight over the past week!

And now we prepare to face the New Year...

Friday, December 25, 2009

Comfort and Joy

One of my favorite Christmas carols is "God Rest Ye Merry Gentlemen." Growing up I was particularly fond of the Bing Crosby version. I loved the refrain "'O tidings of comfort and joy."

This refrain holds particular meaning for me this Christmas. We need both comfort and joy.

I've taken comfort and joy in the familiar: Christmas Eve, Ed and I attended the Children's Christmas Worship Service at our church. It was comforting to see St. Peter's decked out in it's holiday finest. I enjoyed listening to the familiar portions of Christmas program, watching Madison and Ethan sing out the Good News with confidence. Hearing the message from my children about God's perfect gift to us brought joy. It was even comforting to sob quietly during part of the program. I was surrounded by my church family who sought no explanation, but simply offered silent support. The safety of my church home and family was dearly comforting.

Even the usually annoying Santa Countdown from my children offered a measure of comfort. There was comfort in going through the traditional rituals of setting out eggnog and cookies for Santa; comfort in reading 'Twas the Night Before Christmas before forcing Madison and Ethan into bed; and knowing Ed was reading Meaghan the same story across town.

And there was much joy on Christmas morning. The children were simply awed by the bounty of gifts under the tree. Our usually minimalist Christmas mornings were replaced by the generous offerings of numerous Secret Santas. There was joy in watching Ethan and Madison show steely restraint while waiting for their father and sister to arrive home from the hospital.
There was joy in watching Meaghan point to gifts then to herself, asking for more and more presents to open. It was joyful to have Meg "kick" us out of her room so she could play with her sister for a few moments. It was joyful to have all three children home on this Christmas morn.

For me, joy tends to be more fleeting than comfort, but I am nonetheless grateful for the satiety comfort brings. Traveling back to the hospital with Meaghan this Christmas Day was difficult, but we had a good day. I could see her relax once she was back in "her" room. I am comforted by watching her sleep peacefully.

Perhaps I found the most comfort in the words of my son on Christmas Eve. "Maybe God let this happen to Meaghan so we can love Him more and want Him more." Thank you Ethan for reminding me that my Heavenly Father wants us to run to him for comfort and joy.

It is my Christmas prayer that you have been as blessed as we were today! Merry Christmas!!

Wednesday, December 23, 2009

Many, Many Thanks

How do we begin to thank the multitude of generous strangers, co-workers, well-wishers, "Secret Santas," compassionate health care providers? We certainly wish we could acknowledge you all individually, but that task is beyond me for now.

In the beginning, we thought we could do this alone; that we wouldn't need meals brought or Secret Santas or the kindness of strangers. How wrong we were! The whole experience of receiving love from others, in its various forms, has been profound. And, really, that's what this has been receiving love.

I never realized how difficult it is to receive an act of love from someone outside my family. It's awkward, humbling, and very intimate. Have you let someone love you recently, in their own way?

Thank you for reaching out to Meaghan, to us. Thank you for sharing your love with us, in every form.

Thursday, December 17, 2009

Unapologetically Authentic

I haven't posted in a while. On some fronts there's nothing new to post: She's still not speaking. On other fronts there so much going on that I don't know where to begin: Meaghan is making great strides with rehab. She can sit up for short periods of time. She has taken 10 assisted steps.

On the medical front things are much more complicated. Meaghan, despite eating a cheeseburger, has pretty much stopped eating. We can get a bite in here, a sip there, but her oral eating is not going well. Twice Meg's ng tube has come out, once because she pulled it out and last night she vomited it out. Ed and I must decide now if the benefits of a G tube (one that goes straight into her stomach) outweigh the risks.

Additionally, Meg has a yeast and urinary tract infection. These past few days you can just see the fatigue and depression and weariness in her face. She's not smiling much these past few days. She seems to be holding her urine, too. I'm sure at some point we're going to have to do a bladder scan to see what is going on. I'm worried about her kidneys.

I've fallen apart this week. I'm devastated and heartbroken and bone-weary. I want to take on her suffering. I can't stop crying. I broke down in front of Maddy and Ethan last night. For ten minutes, I couldn't pull myself off the bedroom floor. I just sobbed. I didn't want them to find me, but they did. Madison draped herself over me and Ethan stroked my hair. I tried to pull myself together, but I couldn't. I couldn't.

I don't feel equipped to handle the decisions that we are required to make. I don't want to be strong. I don't want to do this any more. And I'm not sorry that I'm sharing this. Watching your child suffer from a life-threatening illness is an intensely personal journey and whatever I'm feeling at the moment is my truth and it's valid.

And my faith in God during all of this? I would be lying if I didn't admit to questioning the reason behind all of this. I question why the Lord is letting His child suffer. I can't see the bigger picture in all of this. I see my beautiful daughter suffering. I can't control a single thing about this other than my reaction. Right now, my reaction is grief. I am absolutely justified in screaming out to God in my grief. In these moments, I can't list all my blessings. I am grieving my daughter's losses. My emotions are raw, visceral.

The beautiful thing about faith is I don't need to see the bigger picture. We are suffering, but we are not alone. I know he hears me and all of our prayers. I know he will answer our prayers according to His will. My faith allows me to grieve and question intensely, because His truth is immutable.

Sunday, December 13, 2009

Culture Shock

This morning we had an opportunity to bring Meaghan home for a few hours on a day pass. We waited until the last minute to tell the children.

I wish I could say it was something out of Norman Rockwell, but it wasn't. It was awkward and overwhelming for everyone, especially Meg. Madison and Ethan were so excited to have her home that they just kept peppering her with questions. (Meg now has a handy "Yes/No" chart which facilitates communication.)

Meg appeared to be in shock. In the couple of days since she's seen me I've completely shorn my hair, the house is decorated for Christmas, the stinky dogs were licking her up and down, her siblings treated her like royalty... The world was spun on it's ear.

Meaghan was easily frustrated by her lack of mobility. We visited every room in the house. She'd briefly show interest in something, then become irritated again. The kids wanted to play and interact with her, she just wanted to observe. I wanted to take some photos, but she put her hand in front of her face and yelled. She did seem to enjoy her walk around the neighborhood, though.

She was home for a total of four hours. Going back to the hospital was torture. I didn't want to leave the kids or home. I cried. It was awful. We all want her home, but it's not what we thought it would be. At the hospital we can tend to her fully, without distraction. Home is a string of distractions. Here, everyone expects her to tow her share of the line. Home, she is doted on. Here, she is tethered by an IV pole. Home, she isn't.

She's a woman without a country. And I feel for her. It was a small dose of reality for all of us. Bittersweet.

Saturday, December 12, 2009

A Moleski Advent

Maddy, Ethan and I have been home sick with sore throats, headaches and drippy noses. We are successfully on the mend now. I have enjoyed playing nursemaid to the big kids, but...

The house is empty. Our tiny bungalow, usually swelling with noises and activity and sibling fights, well, it just seems to echo. Sure Maddy and Ethan still fight and play, but there's no resonance to it. The toys up in the girls' room are untouched. Maddy refuses to sleep or play up there.

One of my favorite things to do is wash dishes. We don't have a dishwasher and our kitchen window overlooks our backyard and garage. I used to love staring out the window while washing dishes. It was an easy way to ruminate on the day's events, but now I struggle to find continuity. The Christmas ornaments decorating the potting bench sway absently. My collection of Christmas stained glass hanging from the kitchen window is lackluster at best.

Perhaps I haven't been around long enough to notice that home isn't home anymore. We have all been feeling it. Ed and I, running our split shifts, are more insulated from Meg's absence. But being home with Maddy and Ethan, I feel the lack of purpose, the aimlessness of it all.

The Christmas tree doesn't shimmer like it did before. No one cares if the dogs get anything in their stockings. No one is agonizing over which cookie recipes to select. No one is playing with the Nativity. No one is reading nightly from the years of collected Christmas books. I think we've only lit the advent candles twice.

Daily living seems like an after thought. Our focus is on this elusive calendar that conceals Meg's homecoming. The kids aren't focused on Christmas Day's bounty of gifts. They- we - are focused on Meg's homecoming.

Advent is defined as "a time of expectant waiting and preparation for the celebration of the Nativity of Jesus at Christmas." While we try to prepare our hearts for the promised birth of our Savior, we also wait expectantly for Meaghan's homecoming.

Families too many to be numbered struggle with the uncertainty of a loved one's return. The apprehension and singular desire of expectant families makes the Western celebration of Christmas seem perverse in its excess. Despite our best attempts at retail therapy and material distractions, I'd venture our true hearts' desire is to celebrate family - however we define that word.

What greater thing is there for human souls than to feel that they are joined for life - to be with each other in silent unspeakable memories.
-- George Eliot

Wednesday, December 9, 2009


We have three radiation treatments under out belts, 27 more to go.

Meaghan has stopped eating. It could be from a multitude of things like esophageal swelling from the radiation or nausea - who knows. If only she could tell us!

Of course, it causes me great concern. Thankfully, her tube feeds continue, but we may need to increase the duration and volume to compensate for the lack of oral food intake. If we are required to do this, it will make physical therapy more cumbersome.

Days like these are the days when I start to question and blame myself. Rationally, I know we had no other choices, but emotionally, it's my name on the consent forms. I allowed this to be done to her. I told her she'd feel all better after the doctor took the boo-boo out of her head...

Tuesday, December 8, 2009

Quiet Heroism

To my husband,

On November 7th when our world came into focus, we fell into step with one another. Since that day, we've been standing shoulder to shoulder. I may narrate this nightmare, but it is you beside me holding the candle in this darkness.

Together, we paced the halls during her first surgery. We turned to each other for quiet solace when comfort from others was too abrasive. I remember the nausea, the disbelief, the emotional implosion. I remember looking at you and seeing my own incredulous eyes staring back at me.

It was in her first hospital room, room 24, as we held each other, that I felt our common mission take shape. In that room, we mobilized and strategized and instantly re-calibrated our marriage. You came into focus. We came into focus.

When my grieving finds no words, you understand. When my impotence finds no outlet, you offer yourself. When my regrets are unbearable, you take my hand. When I'm unable, you are.

I want Meaghan to hear what her heart already knows. She has the bravest daddy. Her daddy loves without boundaries, without questions or conditions. Without fail, without complaint, her daddy is there. Everyday.

Edward, I want you to know, you are of uncommon strength of character, love and fortitude. I am grateful to be called your wife.

Day by Day

We are on day two of radiation treatment. Praise God, Meaghan seems to be handling it well. She comes back with a headache, but thanks to the preventative approach of her medical staff, Meaghan has not yet been burden with nausea or vomiting.

Meg was able to handle four therapy sessions yesterday and five today. She is one tired trooper! We are so proud of her!

Meaghan even had time to squeeze in a visit to the ophthalmologist. Structurally, everything looks fine and there is no pressure on either of the eyes.

Two radiation treatments down, 28 more to go...

Many, many thanks to you all for your support. Please pray for the following:
  • safe transport to and from radiation treatments, especially with inclement weather
  • precise delivery of radiation treatments
  • that her mediport line remain free from clots, contaminants and infection
  • that Meaghan sleeps well during the night so she has the strength for her days
  • that Meaghan stays in good spirits
  • a special prayer for Ethan and Madison: they desperately miss their sister and are struggling to find joy this Christmas.

Sunday, December 6, 2009

Kicking and Screaming!

How long and hard do I have to kick and scream before I can make this all go away? Why? Just, why? Nothing about this makes sense.

I hate Mondays.

Good News!

Meaghan's EEG came back negative! Her neurosurgeon was in agreement that given Meg's situation, it made sense that her brain be imaged again. A CT was ordered - 4th ventricle is clear, no hydrocephalus, no structural brain abnormalities.
I'd like to thank the staff at Children's and Van Elslander for their cooperative spirit. It takes tremendous effort to have transparent communication and a consistent vision; both parties NEVER make us feel that our repeated questions and double-checking is unwarranted. They communicate between each other multiple times daily. They are determined to provide continuity of care wherever Meg is.
As you pray for Meaghan's strength and recovery, please pray for the following: safe daily transport between hospitals, especially if we are dealing with inclement weather precise delivery of radiation treatments that Meaghan won't struggle w/nausea, vomiting, decreased appetite that Meaghan will have the strength to continue her afternoon therapy sessions that Meg will get the recuperative sleep she needs at night to fortify her during her long days that the medical staff recognize when Meg is struggling and treat her with compassion and love that all our ancillary support and caregivers (you all know who you are) have the strength to stand beside us Thank you again for your unceasing prayers

Friday, December 4, 2009

Odds and Ends

With all the fine tuning going on in preparation of Monday's radiation treatment (far too numerous and exhausting to itemize), I thought I'd share some funny, inappropriate and quirky things that have come up recently:

  • After giving a detailed history to a med student, including that Meg has highly diminished gross motor function and no fine motor function, the med student asked: "So she can't walk?"
  • Ending a phone conversation with my sis, I said, "I have to go, I'm meeting with a social worker." She asked, "Which one?" I replied, "Does it matter? Meg has more social workers than a crack 'ho baby mama!"
  • When trying to explain to Maddy and Ethan that Meg didn't "catch" cancer, the only analogy I could come up with was that certain Clone Trooper cells in her brain received "Order 66" and went to the "Dark Side." They understood my pitch. Score one for Mom! (All you Star Wars fans know what I'm talking about!)
I'll take these moments of absurdity and dark humor over the waves of anxiety and fear I'm stifling. As Monday bears down on us, I know we are preparing for another difficult leg in our journey. I just wish we had time to catch our breaths.

Thursday, December 3, 2009

A Few Photos To Share

After nearly four weeks of hospitalization, we are finally ready to bring the camera back into our lives. We'd like to share some photos of Meg with you.

Above: The kids were invited outside for a sneak peak at the Children's Hospital float for the Thanksgiving Day Parade. That's Meg in her blue wagon!
Here Meg just received a "real" puppy from her Aunt Helen. He whimpers and snores and moves his head. More importantly, he makes Meg smile.

As you can see here, Meaghan had some very special visitors earlier this week. On Tuesday, the Red Wings visited the hospital. Meg became agitated while in the room with all the other children, so my mom took her back to her own room. Well, she must have caught someone's eye, because they paid Meg a personal visit. She really enjoyed herself. My mom said all the players were wonderful, but Brad May took a special interest in Meg and stayed with her for a long time, stroking her hair and speaking to her. A big thank you to our Red Wings! You made Meaghan's day!!

Here Meg is showing me her new wheels! While it requires tremendous effort to keep her head and trunk upright, she enjoys being wheeled around for short trips.

Here Meg and I are adding accompaniment while the music therapist played "Jingle Bells."

We look forward to sharing more happy pictures with you all. Thank you for staying with us through our ups and downs.

May our Lord keep you in His care.

Wednesday, December 2, 2009

Come On!

Alright, enough already... I've heard repeatedly that there will be good days and bad days, one day at a time, etc. I'm just looking to string together a couple of uneventful days! No luck.

During one of Meaghan's therapy sessions it appears that she had two very brief focal seizures. Neurology has been consulted and an EEG is scheduled for tomorrow morning. I can't even begin to wrap my head around this potential wrinkle. Strike one!

In addition to this development, Meg has lost 1.5 Kg in one week, so removing the feeding tube is a no-go. While her weight loss is being attributed to her level of exertion during therapy, they do not want her weight loss to get out of control. Strike two!

So while we're at it, we were advised of Meaghan's double randomization results: She will receive the standard doses of radiation during both phases of her treatment (cranio spinal axis and posterior fossa). We were really praying that she receive a reduced dose of radiation at some phase of her radiation. Strike three!!

All this information came neatly bundled within a 15 minute time span.

Yeah, I lost it today.

Here's a little piece of advice for all you med students, residents and attendings: Read a patient's flippin' chart before you come in to assess! Stop and think that neither the patient nor the family wants or needs to repeat every little detail of the entire saga. Come informed!

Here's another little morsel of advice for parents: if a room full of white coats and scrubs staring at and talking about your child upsets her, kick 'em out. Have them assess, then go to another room for consult. And don't apologize for expecting them to come prepared or asking them to be sensitive to their patient's emotional tolerance for being spoken about in third person.

And while I'm at it... Lord, enough already! I'm not looking for miracles (while it wouldn't hurt). I'm just looking to string together several uneventful days for Meg. That's it. I just wanted her to have some peace before radiation begins next week.