Dealing with Setbacks

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

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

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

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

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

Grateful But Grieving

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

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

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

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

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

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

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

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

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

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

How Dad Feels/For Meaghan

Dads are supposed to be strong. We are not boys, we are grown men. We must be strong, brave, willing to fight, and somehow remain cool among everything.
I am not close with my Dad. Not since I was a boy. There are reasons, but most are out of either of our control. But these are times, where I wish we could be, just to talk. But for now, I’m on my own.

Things don’t happen for a reason.
They happen for many, many reasons that I cannot even pretend to understand.
What I do know is that a 5 year old girl has sacrificed nearly everything in her life to make ‘The Moleski 5’ complete again.The big kids have changed so much in the past 4½ months. A lot of it was their doing, but honestly, we are making them grow up faster than they should. I am amazed at the level of patience that they have shown for their sister.
For me, I certainly don’t care about the things that I used to think were important. I’ve seen the best in people that I never knew existed. Most of all, I’ve learned that there are things/people in life bigger than myself. I know my wife well enough that she feels the same.
If Meaghan calls for me every 5 minutes for a hug, we won’t hesitate. (At least for the first 15 times). Regrettably, I use those instances to get the strength I need to continue. That’s not exactly the most admirable thing to do, I know. It’s a lot to put on a 5 year old. And it’s ironic that most of the time I could not survive any of this without the strength of my little girl.

So let’s be honest. It’s not about being cool anymore. And I’m not the brave one here. None of us are. In fact, we are all cowards, fearful of how this will end and how it will affect us and those around us.
Meaghan is the one who is providing the strength, courage, and power to all of us.

Bear with me
Meaghan, I’ll be strong.
I’ll stand by your side. Always.

Remember how we danced, after everyone left?
You stood on my feet until we were too tired
Even to sleep.

Ask me for anything.
I’ll give everything I have.
Take my hand and I will follow
Wherever you lead. I will never let go.

Rally the War Cry

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

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

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

I am a terrified mother.

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

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

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

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

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

Back Again

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

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

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

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

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

Twilight Zone

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

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

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

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

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

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

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

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

What's In Your Wallet?

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

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

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

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

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

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

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