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.

Monday, November 30, 2009

Great News to Share

I can't wait to share the good news!

Meg's spinal MRI is clean!! Thank you, Lord!!

Also, Meg is working hard at physical therapy: she was able to support her weight upon her elbows while on her tummy. She could do this in one minute increments. Go Meg, get your little work out on!!

We meet with our Oncologist tomorrow to sign consents to enroll her in the protocol and discuss all the chemo side effects. That will be a long, sucky consult, but we forge on!

Thank you Lord for meeting me in my time of need. I was frustrated and angry, but I did not despair. Thank you for the multiple blessings today. Help give Ed, Maddy, Ethan, Meaghan and me an extra measure of patience as we redefine our family schedules.

Sunday, November 29, 2009

Not in Any of the Parenting Books

Saturday Night
Family Room
Mom, Ethan and Ribby (our Golden Retriever)

Ethan: (flops onto Ribby with a loud sigh) "Where has my childhood gone?"
Mom: (startled, turns to Ethan) "What? What do you mean?"
Ethan: "Nothing."

[Bedtime ritual ensues, teeth are brushed and covers are tucked in.]

Mom: "Ethan, what did you mean by "Where has my childhood gone?' Where did you hear something like that?"
Ethan: "Nowhere. I came up with it in my head."
Mom: "Well, what do you mean by that?"
Ethan: "What's the point of growing up? It [life] just gets harder and harder, then I have to leave [home]."
Mom: "That's not true. You don't ever have to leave, not ever."

I must have missed that chapter in the parenting books! What the hell do I do with that? There's so much that went unsaid between us. Those rich, milk chocolaty eyes just staring into mine, searching me.

I went to bed angry last night and awoke in a foul mood this morning. I'm pissed that cancer is part of Maddy's and Ethan's vernacular. I'm pissed that I can't protect them from this. I'm pissed that at the ripe old ages of 10 and nearly eight, they know Mom and Dad can't make it all better.

We go through the motions of trying to keep things "normal" and cancer free at home, but it's always there. It was there when the big kids and I started decorating for Christmas while Dad was at the hospital with Meg. It's there when a friend is picking them up from school. It's there when someone brings us a meal. It's there in our absences, too.

Saturday, November 28, 2009

Don't Look Away

When was the last time you were still? Quiet in the heart, mind and body? When was the last time you really paused to acknowledge the day's triumphs and blessings? In a normal setting that mindfulness takes a tremendous amount of discipline.

Generally, I'm easily irritated, emotional, driven to distraction by details and always focused on "getting things done." It would be so much easier for me, for us, to look away from our daily joys and blessings and become mired in anger and resentment. Anger and resentment are very self-serving and self-perpetuating emotions. Being angry feels good - for a time.

Many friends and family tell me they are inspired by our strength. Here's the dirty secret in all of this: I want to wallow in anger, grief and resentment! But, if we let ourselves dwell in those dark places that darkness will contaminate us and our older children, too. It is with dogged determination that we focus on those small, seemingly insignificant blessings and victories. (Something I failed miserably at before.) It is the same determination that fortifies us in our exhaustion, enables us to stand guard against the "What if's?" and the "Why us?"

We are not strong because it is easy or because we want to be. We are strong and emboldened in our faith because it is required of us.

Last night I took stock of God's blessings for us that day: safe travel during transport; small improvements during therapy sessions; a quiet evening with a calm Meaghan and the icing on the cake... Meaghan chewed and swallowed macaroni and cheese!!!

God is always good, we just need to stop looking away.

Friday, November 27, 2009

Working Out the Kinks

Today was our first run through with transporting Meg to and from Children's and St. John's for procedures and treatments. Things did not go well. Too many different factors were involved for me to detail. It wasn't for lack of planning, either. It's the execution of the plan that plain failed.

The senior social worker and program coordinator are very invested in making her daily transfers smooth. We spoke candidly and at length with them both. It's quite an undertaking getting her where she needs to be everyday, plus meeting her rehabilitation requirements.

Meaghan's procedure today was for the full spinal MRI and a baseline audiology reading, both requiring sedation. In fact, everything Meg has done will require sedation. This is unfortunate, but necessary to ensure the treatments and procedures are precise. Please keep the MRI pathology in your prayers. That's our last clinical hurdle to overcome before qualifying her for the ACNS-0331 protocol. This protocol may enable Meg to receive lesser amounts of radiation during certain portions of her treatments. It's all double randomized and quite involved, so please feel free to look up the protocol if you are interested in learning more.

Meaghan receives therapy services Monday through Friday, 9:00 a.m. to 4:00 p.m., with a break for lunch. She also receives a half day of services on Saturday. She receives two sessions of each of the following: speech, occupational, physical and recreational. She handles therapy sessions much better when Ed and I are not in the room.

To be perfectly honest, this break from Meaghan allows Ed and I to focus on either work or the mountain of paperwork and documentation we are accumulating regarding Meg's care. The break gives Meg, Ed and I an opportunity to miss each other and get refreshed. That's a difficult thing to admit let alone commit to writing.

I came across something that brought me comfort:

He leads us on by paths we did not know;
Upward He leads us, though our steps be slow,
Though oft we faint and falter on the way,
Though storms and darkness oft obscure the day;
Yet when the clouds are gone,
We know He leads us on.
He leads us on through all the unquiet years;
Past all our dreamland hopes, and doubts and fears,
He guides our steps, through all the tangled maze
Of losses, sorrows, and o'er clouded days;
We know His will is done;
And still He leads us on.
Nicholaus Ludwig Zinzendorf

Thursday, November 26, 2009

A Happy and Healing Thanksgiving

Happy Thanksgiving Everyone! It has been 21 days since Meg was admitted to the hospital. It has been 19 days since her surgery, hence 19 days since we've heard her say "Mom" or "Dad;" 19 days since she's walked, sat up on her own, or fed herself. Yet, we are thankful.

We are thankful for the complete resection of the tumor, for her clean lumbar puncture, for her smiles and occasional laughter, for lack of blood clots, infection, fever... Certainly, there are a great many things we grieve, but to dwell there is of no service to Meaghan.

Many people have been touched by Meaghan's situation. Our church family is uniting in a powerful way. We have received correspondence and prayers from many people we have never met. Distant family members are reaching out and reconnecting. The outreach is powerful, amazing and humbling.

Tragedies and crises are great mobilizers. They force us to look at our mortality, force us to reassess priorities and, hopefully, they force us to heal. The unfortunate byproduct of these crises is the cooperative, loving spirit is transitory. As a society we have short attention spans, other newer tragedies will come to the foreground and people will move on. And that's okay.

But Meaghan's journey of healing is a shared one. Her journey is of medical and physical healing. Your journey may lead you to a spiritual healing. Others may need emotional healing. Regardless, we are all on this journey of healing with Meaghan.

No matter the outcome, we pray that you share this journey of healing with Meaghan in your own personal way long after you stop reading our blog. Please help us ensure the focus of healing continues; shapes our interactions with one another; gives us pause before we speak.

On this Thanksgiving, November 26, 2009, we will be saddened that we aren't all together for a beautiful meal. However, if just for today, there is no room in our hearts for anger, hurt, or regret.

May the God of grace bless you and your loved ones abundantly. May your hearts be full of thanksgiving and the joy of loving fellowship.

Tuesday, November 24, 2009

New Digs

Meaghan was transferred to Children's Hospital today for inpatient rehabilitation treatment. She will be there for a minimum of three weeks. During this time no one under the age 18 can visit her. Madison and Ethan are very angry and hurt. The policy is in place to protect patients from H1N1. While we understand the need for these types of policies, it is an emotional set back for our family.

Now we begin the coordination of her nearly daily transport for radiation treatment. It's a logistic nightmare, but it can be done.

The move is very disconcerting. We need to reorient ourselves: new facilities, new staff, new doctors, new policies, etc. We are completely exhausted.

Bracelets are in!

Praying for Meaghan bracelets are in! If you are interested we are requesting a minimum $5 donation.

On the Move

Where do we even begin to recount all of Monday's events without getting bogged down in detail?

Meaghan had her radiation planning/mapping session. This took a little over one hour. All of the measurements of her mold will be sent to RI for a quality assurance check. Meaghan is slated to begin her radiation on December 7th, if not sooner. Also, her full spinal MRI is on Friday (keep that in your prayers). Here's an interesting bit of information: she has several pinpoint tattoos at various junctures on her trunk. These permanent tattoos are required to maintain precise delivery of radiation.

In typical Meg fashion, she took her time come around from the sedative and was generally quite irritable for the rest of the day. Not even a visit from Ethan and Maddy could raise her spirits.

Meaghan will be transferred to Children's Hospital for intensive inpatient rehab. She will stay a minimum of three weeks, receiving a minimum of three hours per day of therapy: speech, physical, occupational and recreational. We are excited for her because she needs it. We are hoping to get her transferred at some point Tuesday, otherwise we might be looking at going next week because of the holiday. The social worker and case workers just need to do the dance with the insurance company. Pray common sense prevails and we can expedite this. The stronger we can get her before radiation begins the better. We really enjoyed our conversation with the chief pediatric rehabilitation medicine doctor. The man speaks with common sense.

We've met with Meg's case worker and a bunch of really wonderful support staff. They listened to our concerns and we feel we've been heard. We have a high-level overview of the direction we're headed toward.

All Ed and I can do is continue to pray, try not to take our frustrations out on one another, and follow-up on all the plans in play for Meaghan.

Please continue to pray for Madison and Ethan. While Ethan doesn't articulate his struggles they break through nonetheless. Let me paraphrase some words from Madison: I'm too tired to be this angry anymore. Now, I'm just sad. I don't want to be a trooper anymore.

Just meditate on her words, they're a pretty good window into both of their struggles, heck all of our struggles.

Sunday, November 22, 2009

Hitting a Wall

I'm completely frustrated! She's not sleeping at all - one and two hour stretches punctuated by equal times of crying and screaming does not equal recuperative sleep! After benedryl, Trazadone, and one dose of Adavan not cutting it we gave her another dose of Adavan. Up side is she slept for six hours. Down side is she is back to not opening her eyes. So, for example, she is awake with her eyes closed and whining non-stop.


We are looking into some other options for her to help her relax and sleep. I've had candid conversations with the staff. Most pointedly, she has not really slept in two weeks. How on earth is she expected to handle radiation and chemo if she is not resting?

So many of you have expressed concern about how we are coping. I cannot speak for my husband, but I'm hitting a wall. I know the tumor had to come out, but nothing, absolutely nothing has prepared me for this type of recovery. I don't even know how to describe the frustration and anger I am feeling. Lo! to the person who pokes this very angry mama bear!

Saturday, November 21, 2009

Next on Tap

First, the good news: Meaghan's lumbar puncture came back negative. Praise God! Yesterday, Meaghan was moved from PICU to the regular Pediatric Floor. While this is good news from a clinical perspective, we sorely miss the friends we've made in PICU. The entire staff provided Meaghan and our whole family with superlative care and compassion. We may not see them as much, but I know they are following Meaghan's progress and praying for a full recovery. In fact, one of Meg's PICU nurses came over and read Meaghan her favorite story, Olivia! May God bless them abundantly!

Additionally, after my request, the docs have secured two doses of H1N1 vaccine for Meaghan. She had her first dose today. The rest of us got vaccinated today, too. We haven't had the heart to tell Ethan he needs a booster in a month.

We look forward to a relatively quiet weekend. Meaghan has provided us with some additional smiles. She is still not talking and is very aggitated for most of the day. Sleep does not come easily or stay long. Our goal is to continue to get her to swallow foods by mouth and to work on chewing. The harder we work on getting her back to a regular diet, the closer we can get to bringing her home. Aside from occasional gagging, Meg has made peace with her feeding tube.

Monday will be a big day for us. At 8:00 a.m. we have our first radiation simulation. She will need to be sedated so they can make a precise form of her body. That will take up most of her morning. Additionally, she will be evaluated for inpatient physical therapy. Seeing as she still cannot hold her head up, sit up, chew, stick out her tongue, etc., I don't see how she wouldn't qualify for intensive inpatient physical therapy.

Inpatient physical therapy will mean a transfer to Children's Hospital. This will add a dimension of complexity to her treatment, because it will mean daily transfers between Children's Hospital and VanElslander for radiation treatment. She will have radiation five days a week for about six weeks. So every day, Meg will be transported via ambulance, sedated for treatments in the morning, then returned to Children's for physical therapy. Whew! Oh, and sometime next week she will have her full body MRI. Good thing Meg likes being wheeled around in her bed.

On a personal note: While I know it isn't expected, I am very sorry that I haven't had the time or ability to write personal Thank You notes to all of you that have blessed us with your time, your prayers, your gifts, financial support, bringing meals, doing yard work, chillin' with Maddy and E - all of it. Humbled doesn't adequately express how we feel. Thank you, thank you, thank you...

Please Join Us!!

Thursday, November 19, 2009

Flying High

For the past two weeks Meg has been hospitalized, twelve of those days in the PICU. Ed and I usually take Maddy and Ethan to visit every other day depending on Meg's status. The visits are short and fraught with anxiety and disappointment for the big kids. Until today...

Today was absorbed trying to make heads or tails of what treatment options are available and which best meet Meaghan's long term needs. (That's an entirely other post.) Suffice it to say, Ed and I are beyond overwhelmed. Feeling more obligated than excited to have the kids visit, Ed brings the kids up after a birthday party. Boy, were we ever blessed!

Ethan takes Meg's hand and tells her to squeeze it and she does. He then goes on with some physical comedy pretending that Meg is crushing his hand. And Meg smiled! Excited by such a groundbreaking response, Ethan ups the ante by getting sillier by taking her hand and pretending to get punched by her. We were all rewarded with her big toothy smiles and her laughter. Her laughter...

No matter what happens in the coming months and years I want to sear into my memory this moment: The five of us together absolutely elated and full of love for one another!

Thank you Lord for this moment of joy to help sustain us.

Wednesday, November 18, 2009

Fully Accessorized

Meaghan's surgery went well. The medi-port is in. It sits over her sternum. It's a little smaller in diameter than a quarter and appears to be about 1/2 inch thick. The spinal is done. We should have those results by Friday. The feeding tube is in. She seemed to tolerate the anesthesia pretty well.

We're back in our good 'ol room in PICU. It's funny how much comfort you get from seeing the familiar faces on the PICU floor. Meaghan did get a bath, her hair washed and a massage yesterday. It really calmed her down.

A co-worker of Ed's sent pretty gel window clings. Madison and Ethan enjoyed putting those on Meg's window last night. It really does brighten things up.

Ed had a brief meeting with a radiation oncologist this morning. We will meet with him again to tomorrow to discuss Meaghan's radiation treatment options more in-depth. The list of side effects is absolutely terrifying.

Now that we are getting into treatment option scenarios we will begin the dance with the insurance companies. Just when I thought our minds couldn't possibly process anything else, we begin this indecent courtship.

Tuesday, November 17, 2009

Parade of White Coats

What a draining 24 hours! Meaghan was very fussy last night. I don't know if it was a headache, gassy tummy, surgery related irritability... We just don't know. After a long fitful night, Tuesday was a non-stop parade of lab coats: Meg's primary pediatrician, physical therapy, occupational therapy, PICU Attending doc and residents, Oncologist, Walk With Me doctor and nurse (patient and family support services) and a new surgeon.

Meaghan will have another surgery on Wednesday. She will undergo a spinal to determine if there are any cancerous cells in her spinal fluid and she will also have her medi-port installed. Surgery is scheduled for early afternoon. I'm nervous. We'll hopefully have the results by Friday.

Meaghan's progress continues to be painfully slow. She's still not chewing on her own. Unfortunately, we will have to deal with the NG tube again. They will be putting it in during surgery tomorrow. I know she's going to hate it. We need to get out of this nutritional deficit before we can simply resume maintenance. It's so frustrating for her and us. We continue to provide calorically dense and fortified shakes to her through a syringe.

She continues to make progress by increasing her level of alertness, but she is still not talking or smiling. She cannot sit up on her own, or really even hold up her own head. She is so frustrated by all of this! I would love for her to sit up and just tell us off - anything!

I am proud of my big kids. They are trying to hard to handle all of this. Madison worked with Pastor to design bracelets to sell to help defray medical bills. Maddy is so desperate to help with Meg's care. I'm glad she has something to focus on on. We all need a purposeful distraction.

We'd like to, again, thank you all for your prayerful support of Meaghan's healing. May God provide healing to the areas of need in your life.

Monday, November 16, 2009

Meeting with Oncology

We finished our first of many meetings with oncology. Medulloblastoma has been confirmed.

I thought I was prepared. Even though it was an overview, my head is swimming with information: 70% - 80% success rate, risks of radiation: neurological and cognitive impairment; hearing loss; dysfunction of speech pattern, critical to start radiation within 31 days of surgery, a year of treatment, spinal tap need on Wednesday, full MRI needed within three weeks...

We can't even get her to eat enough! We might have to go back to the ng tube. They called in speech therapy, physical therapy, occupational therapy... Our vibrant, willful, stubbornly shy five year old has been reduced to wet noodle. It's like having a newborn again. What must she be going through? What is her future? What will be her quality of life?

Ed is resolute, determined. I thought my daily sacrifices as a mother were taxing. I am not prepared, but who is ever prepared to have a life-threatening illness park itself in the middle of your life?

Sunday, November 15, 2009

Lunch as a Family

Maddy, Ethan and I went to church today. It's been eight days since her surgery. It was hard to walk into church, not because I didn't want to be there. It was difficult because I was unsure how many questions or hugs or looks of concern the kids and I could handle. I was particularly concerned how the older two would handle the attention after service.

We all did fine. No one broke down crying. People seemed to sense that a hug was adequate. It was helpful that the kids were dragging me out of church, excited to pick-up some food from Wendy's and head over to the hospital.

We ate lunch as a family. It was nice. Meaghan was a little more alert and watched her brother and sister. I was worried that it wouldn't be enough, but they seemed renewed and excited just to see her eyes looking around and sometimes watching them.

For now, I can call today a good day. We were all together for a brief time. No one fought. We chuckled at Maddy's and Ethan's antics to rouse their sister. It was some perverse sense of normal, but at least we were all together.

Saturday, November 14, 2009

No Sleep

It's almost 6:00 a.m. We've logged maybe two hours of broken sleep. The ng tube is really aggravating her. There's really nothing else they can give her. I want to scream from exhaustion, from helplessness... If I only knew what I could do to help her feel more comfortable. I laid in bed with her off and on. That would help a little, but not for long.

I hate the ng tube. We were at least getting some quiet periods of waking. Now she's so exhausted and irritable. And I don't blame her one bit.

Friday, November 13, 2009

Truer Words...

Our 10 year old was expressing her anger and frustration, "Mom, I really don't like God right now, {pause} but I know I have to love him. {long pause} That's jank!" Well, Maddy, I couldn't agree more!

The NG tube is in. We'd gone from longer restful periods, back to extreme irritability. This is going to be a long night. I'm angry and helpless, but she needs the nutrition.

As we await the full pathology report, we are trying to focus on the more immediate hurtles: warding off infection, increasing the sodium output in her urine, getting her to eat. We are also trying to focus on some loving things we can do: sponge baths and loving massages. It's always a fine line - not wanting to over stimulate her.

I continue to pray diligently for her health care providers.

Me? I'm starting to grieve for our old life... The tears are coming more readily now. To paraphrase my much too mature daughter: This is jank!

Still Waiting

Meaghan is still only half awake and very irritable when she is awake. No smiles or words yet. We are making very, very slow, but steady progress.

The doctor's have raised her drain to 20 which is good and the fluids are still nice and clear. Her sodium levels are still low, so we are aggressively treating that. Her nutrition intake is null, so we are forced to have an nasogastric tube for nutritional supplement. We know it is for the best, but it still feels like a setback.

Still no word from pathology. While we wouldn't be able to start treatment right now anyway, awaiting final confirmation is very difficult. We hope to hear something by Monday.

For now we are focusing on our day to day goals, like eating. We are praying constantly. Please pray for Meaghan's older brother and sister. They are really having a difficult time with all of this. Madison is angry with God and Ethan is just so easily frustrated.

Thank you for your unceasing prayers.

Thursday, November 12, 2009

November 12, 2009

First, many thanks to all of your for following our new journey. We are so thankful for our families' support. Thank you to our church family at St. Peter's Lutheran Church in Eastpointe for their outpouring of support to our family. Thank you to all of you we don't know for lifting our daughter and our family in prayer. It means so very much. So many of you have expressed a strong desire to help in anyway. Rest assured as soon as we determine what our needs are we will be soliciting the help that has been so generously offered.

Meaghan's progress is very slow. She has periods of wakefulness, but there has been no talking or smiling. She seems to either be half-awake, sleeping or crying and fussing. While I have been assured that this is normal given her type surgery, it is very difficult for us to watch. Currently, we are trying very hard to get her to eat on her own. If we are not successful with this very soon the doctors will have to look at a feeding tube or pic line.

We have not heard from pathology yet. We do realize that a correct pathology is key to a precise course of treatment. We are praying for all the health care workers involved in Meaghan's care; that they will be given a extra measure of discernment, compassion and wisdom in helping us guide her on her journey of healing.

I hope to post more encouraging news later today.

Wednesday, November 11, 2009

Amy's Updates

Below are the updates from Amy that have been posted on Facebook. Check back soon to see new posts as Amy will have the ability to post directly to this blog. Thank you!

November 6th - 10:08pm

First a big heartfelt thanks for all the prayers! We need them! I'm sorry I haven't been able to return all the calls and texts. Please know I appreciate your kindness. This will be my last post until we get Meaghan out of recovery. Thank you for your diligence. Blessings on you all.

November 7th - 1:46pm

Meaghan Update: Still in surgery, no updates other than she is stable. All they would say is it will be a while longer. Thanks for your continued support and prayers. We are nearing the brink in terms of anxiety. We will let you know when we are ready for visitors.

November 7th - 5:52pm

Update: Out of surgery. Stable. Very long surgery. Removed all of the tumor. Cancer. Medulloblastoma differential needs to be confirmed by pathology which will come in three to four days. Many more tests to come. Thank you for your continued prayerful support. Please allow us some time to process this as a family. I will post as I am able.

November 8th - 11:02am

Meaghan is currently having an MRI to confirm that the entire tumor has been removed. She will continue to be in Pediatric ICU for 4-5 days, perhaps longer. She is stable. At the recommendation of doctors, stimulation needs to be kept to a minimum. Visits are currently limited to immediate family (one at time) and pastoral staff. We feel very blessed by the outpouring of support and prayer. DON'T STOP!

November 8th - 6:00pm

Update: MRI is clean, no residual tumor. Meg is still not awake, but she is responsive. She is aggitated and being quite willful, thrashing around a bit. She still needs a good amount of oxygen, but she is stable. We will consult with oncology tomorrow.

November 9th - 3:36pm

Good News to Share: Meg is off oxygen. Her nasogastric tube is out. She is off Adavan and is receiving Delaudid every 4 hours. Her cerebral fluid is very clear, which is awesome. While, she is not "awake" she is more and more responsive. We get to lay in bed with her and hold her in the recliner. She is finally resting comfortably. No news on tumor pathology yet.

November 10th - 10:46am

Update: this should be a quiet day. We don't expect to hear from pathology until tomorrow. We are working on swallowing and waking up. I miss seeing her smile and those beautiful blue eyes! Please send up a special prayer of thanksgiving for all our health workers and the families that share them. We feel so blessed and supported! God is good!

November 11th - 4:30pm

Update: Meg will be in ICU through the early part of next week. Her eye movement is a little more coordinated today. She seems very sensitive to stimulation. She is experiencing cerebellum mutism, which is normal, but greatly adding to her irritability. No word from pathology. I am asking for an extra measure of patience and grace as we wait for a glimpse of our old daughter - a meaningful look or a smile.