When does the Hurting Stop?

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

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

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

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

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

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"

"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.