Praying For Meaghan

When does the Hurting Stop?

2011-03-20T06:24:00.001-04:00

I’d be lying if I said I couldn’t believe how long it’s been since my last post. The fact of the matter is, I’ve been hiding from blogging. I’m sick of cancer. I’m sick of my daughter having cancer. I’m sick of talking about cancer. I’m sick of working to avoid talking about cancer.

My life is all about cancer because it is all about Megs. At times, it seems impossible to differentiate Meaghan from cancer. At times I feel she doesn’t exist apart from it. Countless times people ask how Megs is doing. I don’t even know how to answer that anymore.

Do you mean how is she doing compared to a normal child? Or how is she compared to the fallout after the craniotomy? How is she today? Overall? I have no quick answers. To say “fine” would be a lie. She’s not fine. Nothing about her is fine or okay.

Yes, she’s made amazing progress. There is no one, not one single person on the planet that I am more proud of than Meaghan. Yet she is a ghost of her former self.

Yes, she’s completed her scheduled chemo and her bedraggled body is inching its way towards recovery. But I’m no fool. I know the cancer could return at any time without and without any warning.

So we trudge on and after nearly two months of post chemo neutropenia and fevers and hospitalizations and transfusions, Meg is making a tentative foray back into the classroom. After much discussion with Ed, Meg’s therapists and doctors, she is finishing the school year in ½ day kindergarten and will repeat ½ day kindergarten next year. This will put her two years behind her classmates.

She has enjoyed her return to kindergarten. I attend as her aide. We belong to a Lutheran Church and School, and while everyone so loves Meaghan, it is a school with very limited resources in a very old building. It is a disabled person’s worst nightmare. Truth be told, I doubt I would be very comfortable with someone other than family taking Meg to the bathroom and helping her using the toilet and such.

Our return to the classroom isn’t without its emotional fallout. I am a wreck. I am exhausted. My body is sore from transporting her. Worst of all, I just want to cry every time I walk into school. Watching her peer group just devastates me. They can stand on their own! Walk on their own!

When we are out in the real world, all I can see right now is what should have been for Megs. It enrages me. It cripples me.

My inability to cope effectively with this level of grief and rage has alienated me from my spouse and healthy children. Some days I am close to non-functioning. I wish I could let go of the rage and anger, but it keeps slapping me in the face. Every time I get over one hurdle, there’s another facet of reintegration to face. Perhaps I wouldn't be as angry if there was a guarantee that cancer would never return. But there are none.

So I cried myself to sleep with this thought: I can’t bear to have her die again.

This Christmas Eve

2010-12-24T07:43:00.008-05:00

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!

Happy Thanksgiving 2010

2010-11-25T21:52:00.000-05:00

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!

Riptide

2010-10-16T21:47:00.002-04:00

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.

My Mind's Eye

2010-07-18T21:40:00.003-04:00

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

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

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

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

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

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

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

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

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

The real tragedy lies in our forgetting.

All Things Practical

2010-07-12T21:57:00.008-04:00

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

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

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

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

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

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

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

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

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

"Trust In God"

2010-06-18T01:15:00.002-04:00

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

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

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

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

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

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

Some Tough Questions

2010-06-08T20:42:00.002-04:00

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

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

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

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

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

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

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

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

A Fearful Mom

2010-05-11T23:47:00.000-04:00

Friday, May 7th was the six month anniversary of Meaghan’s diagnosis. Six months. Six months of hoping, waiting, grieving, loving and living.

Today we are in the waiting room once again. Funny how a small surgical procedure bring all these memories to surface. After the procedure to replace the peg tube with a MIC button, Meg will stay in the hospital for a few days for chemo and post hydration. I wish I could say we fearlessly approach the third round of chemo with undaunted strength, but that would be a lie.

The week before chemo is tense in our house: edgy, inpatient, angry. The tension runs electric, arcing and surging through each of us. Meg is whiny and unsettled. Low-key Ethan is emotional. Madison channels her sassy teenage self. Ed is stoic. I am enraged, mostly at my own impotence. It would be easier on everyone if I romanticized Meaghan’s Odyssey: how everyone could marvel at a family’s fortitude under duress; how we all band together for the greater good. Ha!

The week before chemo everyone retreats to his or her own corner of our tiny bungalow. We hide from ourselves as much as we hide from each other. The dogs pace and shadow us. We stumble over the elephant in the room: what will this new round of chemo bring? I’m disappointed that her counts weren’t as high as they had been right before her birthday. I wish I better understood what causes these fluctuations when we haven’t had any chemo in almost a month. As a mom, nothing frustrates more than not being able “mend” what is broken. And we are broken: in body, mind and spirit.

I really fear I am unable to take another step forward with Meg. I’m scared of losing this battle, perhaps even more scared of what winning might look like in the years down the road. I watch with a mixture of fear and frustration as simple word choices escape her more frequently. I patiently repeat the answer to the same question for the fifth time in less than an hour. I can’t decide if I want to hide in the closet until this is over, whatever “over” means, or if I want to pack up Meg and run away.

There is this perverse little quip fellow medullo/PNET parents share with another: BTs (brain tumors) are the gift that keeps on giving. And yet, we also agree, we never experienced moments of pure joy before we were faced with losing our children. Before they wheeled Meg into the OR, she kept chanting, “I’m hungry! I need food NOW!” I wondered, will I hear her voice again or will we be mute again? It was with great joy that I heard her plaintive demands for food after surgery!

This is Meg’s third round out of nine rounds of chemo; thirty-three percent closer to the finish in this leg of the race. This percentage is exclamatory no matter which way you look at it. Much like Meg herself, simply exclamatory!!

I will fight for you Meaghan. Mom, Dad, Ethan and Madison, we’ll all fight for you, fight because of you, fight over you.

**Engage*Inspire*Love**

Making Peace

2010-04-24T06:41:00.009-04:00

I've repeatedly tried to draft this blog entry for weeks now. There has been lots going on in our family and even more swirling around in my head. So many blessings, so many trials...

April 19, 2010 marked a big milestone: Meaghan turned six! On April 18th, we had a very small open house to celebrate her birthday. At Meaghan's very specific request, there was to be no singing, no blowing out of candles, no photography. She dreads focused attention.

On April 20, 2010 my Father-in-Law, John, passed away after an arduous battle with dementia. He was seventy-five. I am thankful that his body has been relieved of it's suffering. I am burdened that there are no adequate words of comfort for a newly widowed woman.

Across the state, a young boy, just seven, is given grim news. The cancer is back. Brendan wants to fight on! He has more he wants to do! He's praying, we are all praying, for his "Miracle of Miracles." Praise God, the cancer seems to be responding to the more aggressive therapy.

In a rare moment of early morning quiet, I sip my coffee and ruminate on these three different stories. Each calls into question relationships with the chronically ill, how their illnesses shape the art of living with the healthy and abled bodied, how they view themselves within the larger context of a social conscience. And by juxtaposition, how we measure against their reflection.

The larger question in play is God. And, yes, God at times is simply: "God?" Where do You fit into all of this? What are You up to? Some would ask, "Where is God at all?" in these three people's lives. I am most perplexed by Brendan and Meaghan. They are faith-filled young children. Why should a seven year old boy be facing his own mortality? There are a great many similarities between Meg and Brendan's diagnoses and initial treatments. But as I learn about more and more about other Medullo/PNET children, it all seems so arbitrary at times. Why is one child spared and another not? Does God love one child more than another? Is one more deserving of a future than another? These questions are fundamental to my faith.

As we celebrate wonderful milestones and new accomplishments, it is always with baited breath. Tom Nunn, father to Max, aptly describes cancer as an invisible wrecking ball:

"Childhood cancer is an invisible wrecking ball that you don’t see coming.
And after you receive Great News you are still waiting for the invisible
wrecking ball to swing back down again. It has a lot of momentum and you are
constantly stepping side-to-side and ducking and closing your eyes in
anticipation of the next time the wrecking ball passes and wondering how close
it will be."

While doing a craft the other day Meaghan couldn't remember if she was seven or nine! The farther we get from radiation the faster her short term memory deteriorates. Score one for the wrecking ball. Yet, several days later, her new therapeutic tricycle arrives and she's independently riding a bike!! Score one for God and Meg!!

I refuse, we refuse, to stop moving forward. We are currently training our Golden Retriever Ribby to be Meaghan's Service Mobility Dog. This will be a lengthy and costly process. We are looking at investing in a small backyard pool for exercise and therapy. We have begun to work with a group for therapeutic horseback riding. We are trying to find a music therapist and art therapist. And, of course, Meg still wants a puppy! All of these things are outside private and secondary insurance.

As we fearlessly, faithfully move forward with quality of life enhancing opportunites for Meg, my faith is challenged again. My human head and heart will never understand why God allows this to happen to children. Yet, there is peace. Call me stupid or blind, or call me faithful... I know my God, simply IS!

Yes, the Lord did not cure my Father-in-Law's dementia, but he did relieve his suffering in a humane and loving way. I know my Mother-in-Law's and my husband's family's grieving it too fresh, but God is blessing us. She will have the ability to participate more in her grandchildren's lives.

Brendan and his family are facing unspeakable daily trials, but through it all Brendan and his family bless so many. Brendan receives a daily outpouring of God's love and support through all of us that post on his pages, cheer him on, cry and rejoice with him. I am truly priveledged to come to know this young man.

And so, I make peace. The house was empty and quiet. Laying in bed with Meg, I feel her mind and body begin to relax. She is struggling with depression. We hadn't had the best of days together. With her downy soft head nestled under my chin, I let go the day's grievances. God blessed me right then and there. He gave me peace and he was with us, holding us. Feeling at peace, feeling loved, we fell asleep together.

Is it all arbitrary? The disease, pain, suffering, dying? I don't know. Perhaps growing in Christ is accepting the uncertainty with childlike trust. I think my biggest lesson in loving and trusting God is finding peace in the uncertainty, finding love in the pain and hurt.

"He reached down from on high and took hold of me; he drew me out of deep waters." Psalm 18:16 (NIV)

**Engage*Inspire*Love**

Here She Comes...

2010-04-02T20:01:00.008-04:00

It feels as though we live lifetimes between posts. So much changes with Meaghan each day. Sometimes for the better, sometimes the worse.

Since my last post Meaghan has had another inpatient chemo stay. Our actual hospital stay was pretty uneventful as far as those things go. Just over 24 hours in the hospital. There is still a lot of prep work getting Meg ready for her hydrating chemo stays. Before every cycle, Meg has to have her audiogram and blood work. At the mere mention of the word "draw" she starts panicking about the poke. Our blood work is now done at home, for which I am very thankful. But even with the emla cream to numb the area, Meg has a lot of anxiety.

Meaghan's tolerance of hospital stays is wearing thin. Thankfully, "Alvin and the Chipmunks, The Squeakuel" was released just in time. Daddy was a hero and brought the dvd to her at lunchtime. Also, one of Meg's bestest girlfriends, Kayti and Meg's Nonnie came to spend the day with us. Meaghan also spent a delightful hour with the friend she was hoping to see most: Ellie, the therapy dog.

Ellie is a sweet, velvety soft, four year old buff Cocker Spaniel. Meaghan and Ellie have become pen pals since her last chemo stay. Meg has a picture of Ellie taped to her bedside wall. Ellie spent an hour curled up on Meg's bed, content to be stroked and fawned over. Ellie has a special place in all of our hearts, even Ed's. You see, while Meg may not remember, Ellie came to visit us in the ICU. At a time when she couldn't hold her head midline, could barely keep her eyes open and was in a constant state of agitation, I placed Meg's hand atop of Ellie's head and a small miracle happened. Meaghan was soothed. Her eyes opened and she moved her head in Ellie's direction. It was one of Meaghan's very first steps toward recovery.

We've shared so many of Meg's milestones that we'd like to share another: Friday, March 26th Meaghan started using a walker! She is so proud of herself! When she is feeling well, she asks to use her walker all the time. As our dear friend Jacquelyn is fond of singing with Megs, "Here she comes on the run with a burger on a bun - and pickles on side!"

I hope you enjoy watching Meaghan in action as much as we do!!

Dealing with Setbacks

2010-03-25T14:02:00.004-04:00

May is brain cancer and brain tumor awareness month. Spurred by the previous week's frustrating public interaction, I thought I'd look around for some pediatric brain cancer awareness apparel. Turns out there's nothing that combines the two. Pediatric cancer awareness is gold, brain cancer is gray, but nothing combining the two. (Not to fret, I'm working on that one.) During my internet searches I came across several foundations established in memory of children who have lost their battle against medulloblastoma. That was difficult reading.

While Ed discourages me from reading too much about these children, I feel drawn to honor their struggle by reading about them and praying for their families. For weeks, I've felt this shift in my life. A shift very similar to when you become a new mother. You feel your lifestyle and interests and preoccupations pulling you away from dear family and friends. Not many people can understand the daily toll of a life threatening illness, nor tarry long with us under the shroud that cloak's our family. Truly, it is a heavy burden to be friends with me right now: I'm a distracted, watchdog of a mother married to a medication schedule and an infusion pump. Our daily living is measured in milliliters of input and output. After months of procrastination, I've finally found familiarity by joining a medullo/PNET support group. The simple act of reaching out to others directly affected by this was a huge relief. My friends are no longer my sole outlet for my frustrations. It feels good to move towards reclaiming my friends for me and not solely as a sounding board for our medical concerns. It's a foothold back into my old life.

Our life together now is a chiaroscuro: an interplay of light and dark. Moments of singular clarity and beauty pierce the struggles: Sitting on the floor, I looked up and watched Meaghan cradle her daddy's face in her hands and sing to him "Right Here Right Now" from High School Musical 3. Or when Meg asked Maddy for a hug after they've squabbled, "because I love you, Maddy." And the other night when Meg, Ethan, me and our two dogs were all piled on Meg's bed, snuggled under blankets watching TV. I want those moments branded into my memory.

Meg and I need those memories when we're sloshing through the rain to get to our audiogram appointment. I need those memories more when the results aren't what we'd hoped. Meaghan is already showing a drop in hearing for very high frequency sounds. The chemo is already eating away at her hearing. The start of hearing loss is a minor setback on our new spectrum of normal. Though it is certainly disappointing as we have nine more months of chemo.

We, as a family, are prayerfully pacing ourselves. We are cautiously making very modest plans for the upcoming summer. Anything less seems disrespectful to all those who have gone before us.

Grateful But Grieving

2010-03-15T09:22:00.007-04:00

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

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

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

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

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

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

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

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

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

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

How Dad Feels/For Meaghan

2010-03-10T12:50:00.001-05:00

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.

Rally the War Cry

2010-02-27T08:20:00.003-05:00

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.

Back Again

2010-02-22T21:07:00.002-05:00

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.

Twilight Zone

2010-02-14T08:05:00.003-05:00

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?

What's In Your Wallet?

2010-02-12T10:42:00.005-05:00

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

2010-02-12T09:43:00.004-05:00

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.

The Getaway

2010-02-06T20:52:00.008-05:00

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!

A Quick Update

2010-02-02T23:06:00.006-05:00

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.

Musings on a Day by Ethan Moleski

2010-01-26T20:49:00.002-05:00

**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.

Home Sweet Home

2010-01-23T20:57:00.005-05:00

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!!

The Countdown

2010-01-17T02:30:00.002-05:00

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.

Looking Back

2010-01-11T16:23:00.004-05:00

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.

Our Meaghan

2010-01-06T21:05:00.002-05:00

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!

The New Curse Word

2010-01-04T20:24:00.003-05:00

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.

Resolved

2009-12-31T21:08:00.002-05:00

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.

Getting Stronger

2009-12-28T21:57:00.002-05:00

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.

Christmas Pictures

2009-12-27T19:47:00.003-05:00

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...

Comfort and Joy

2009-12-25T21:09:00.002-05:00

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!!

Many, Many Thanks

2009-12-23T21:38:00.002-05:00

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.

Unapologetically Authentic

2009-12-17T18:33:00.002-05:00

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.

Culture Shock

2009-12-13T20:30:00.003-05:00

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.

A Moleski Advent

2009-12-12T08:29:00.006-05:00

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

Doubting

2009-12-09T21:24:00.003-05:00

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...

Quiet Heroism

2009-12-08T21:43:00.003-05:00

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

2009-12-08T15:27:00.002-05:00

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.

Kicking and Screaming!

2009-12-06T23:00:00.003-05:00

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!

2009-12-06T19:20:00.000-05:00

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

Odds and Ends

2009-12-04T15:27:00.004-05:00

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.

A Few Photos To Share

2009-12-03T21:12:00.012-05:00

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.

Come On!

2009-12-02T23:11:00.003-05:00

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.

Great News to Share

2009-11-30T14:39:00.003-05:00

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.

Not in Any of the Parenting Books

2009-11-29T21:52:00.003-05:00

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.

Don't Look Away

2009-11-28T09:43:00.006-05:00

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.

Working Out the Kinks

2009-11-27T16:31:00.002-05:00

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

A Happy and Healing Thanksgiving

2009-11-26T08:30:00.003-05:00

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.

New Digs

2009-11-24T22:51:00.002-05:00

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!

2009-11-24T14:58:00.002-05:00

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

On the Move

2009-11-24T02:54:00.002-05:00

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.

Hitting a Wall

2009-11-22T09:55:00.002-05:00

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.

This SUCKS!

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!

Next on Tap

2009-11-21T11:59:00.002-05:00

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!!

2009-11-21T09:46:00.002-05:00

Flying High

2009-11-19T23:01:00.002-05:00

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.

Fully Accessorized

2009-11-18T13:46:00.002-05:00

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.

Parade of White Coats

2009-11-17T22:54:00.002-05:00

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.

Meeting with Oncology

2009-11-16T12:44:00.003-05:00

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?

Lunch as a Family

2009-11-15T13:36:00.002-05:00

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.

No Sleep

2009-11-14T05:55:00.002-05:00

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.

Truer Words...

2009-11-13T21:03:00.002-05:00

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

2009-11-13T13:51:00.000-05:00

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.

November 12, 2009

2009-11-12T07:59:00.000-05:00

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.

Amy's Updates

2009-11-11T20:00:00.000-05:00

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

2009-11-11T19:38:00.000-05:00

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

2009-11-11T19:37:00.002-05:00

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

2009-11-11T19:37:00.001-05:00

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

2009-11-11T19:35:00.001-05:00

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

2009-11-11T19:34:00.001-05:00

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

2009-11-11T19:33:00.000-05:00

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

2009-11-11T19:32:00.000-05:00

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

2009-11-11T19:31:00.000-05:00

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.