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.

Out of Gas

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

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

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.