Quiet Heroism

To my husband,

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

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

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

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

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

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

Day by Day

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

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

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

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

Many, many thanks to you all for your support. Please pray for the following:

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

Kicking and Screaming!

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

I hate Mondays.

Good News!

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

Odds and Ends

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

• After giving a detailed history to a med student, including that Meg has highly diminished gross motor function and no fine motor function, the med student asked: "So she can't walk?"
• Ending a phone conversation with my sis, I said, "I have to go, I'm meeting with a social worker." She asked, "Which one?" I replied, "Does it matter? Meg has more social workers than a crack 'ho baby mama!"
• When trying to explain to Maddy and Ethan that Meg didn't "catch" cancer, the only analogy I could come up with was that certain Clone Trooper cells in her brain received "Order 66" and went to the "Dark Side." They understood my pitch. Score one for Mom! (All you Star Wars fans know what I'm talking about!)

I'll take these moments of absurdity and dark humor over the waves of anxiety and fear I'm stifling. As Monday bears down on us, I know we are preparing for another difficult leg in our journey. I just wish we had time to catch our breaths.

A Few Photos To Share

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

Above: The kids were invited outside for a sneak peak at the Children's Hospital float for the Thanksgiving Day Parade. That's Meg in her blue wagon!

Here Meg just received a "real" puppy from her Aunt Helen. He whimpers and snores and moves his head. More importantly, he makes Meg smile.

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

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

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

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

May our Lord keep you in His care.

Come On!

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

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

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

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

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

Yeah, I lost it today.

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

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

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