Tag: Surgery

Of A Cartoon Life and “No Trespassing” Signs

Do you ever find yourself wanting to sit back and laugh at your life?

Not a hilarious sitcom laugh, but a “Oh my goodness gracious stars! I cannot even believe we survived the last week!” type of laugh. The incredulous kind. Because raising kids is a crazy business and raising a neuro kid is crazy on steroids (and that can be taken, at times, in the most literal sense).

And what I’m working up to tell you is that Chase’s second eye surgery is tomorrow. You know, because, there’s nothing else really going on this week… HA.

It’s like he could just feel that it is a crazy season. And whether it was his back-to-back surgeries, the general loss of control, all the eye drops and pain… or possibly the name “Lucas” written in blue marker on his arm that he won’t let anyone wash off… whatever it was and quite possibly “all of the above”; Chase went a little off the reservation. Almost every single conversation has been a you-and-what-army authority struggle, he banshee-screams almost as much as he talks these days, and last week, he ran away from home twice and I found him sitting in a neighbor’s tree house, hissing and spitting about eye drops and having to obey and how terrible and mean we were for asking him to help clean up the toys. With his little body sitting rigid and angry right next to the giant, red “no trespassing” sign tacked to the tree house that his cloudy eyes and mind couldn’t read, and my palms sweating for fear that someone would see us and think I was the worst parent in the world, I had little choice but to embark on a round of oratorial genius (read also: sweet talk) and my best hostage negotiation skills, because, you know, it’s Chase. HA.

He’s missed the bus and he’s thrown fits and if I’m being totally honest and slightly comical, an awful lot of the last few weeks has reminded me of this…

Calvin and Hobbes, credit: Bill Watterson. (wikia)
Calvin and Hobbes, credit: Bill Watterson. (wikia)

And I share this because today, in the shadow of the second surgery, I need to remember that life hasn’t been pretty, but… we’ve survived. And Chase came safely out of the tree house, and there was even one morning when I could tell he wanted to run away from the approaching morning bus , but something clicked and he attack-hugged me with all his emotional energy and screamed in my ear “Mom!! I’m turning it around!! I’m going to do this!!” And though my neck hurt from his bony little arms, my heart was fit to burst with love and joy. Because sometimes the tiniest moments are huge victories.

Isn’t this just life sometimes? It can be an outraged stand-off, hostage negotiating “I so don’t want to do this” thing. And sometimes it’s just straight up “Please God, not this again…” exhaustion. And other times, something clicks and you get the briefest moment to breathe and rejoice in the total chaos and pain.

So we come to the day before another surgery and I guess I pour out all these disjointed little thoughts because it’s a ways of being raw and honest about life with a neurologically-challenged child. I hope it encourages you that you aren’t alone in whatever crazy “no trespassing”, you-and-what-army struggle you face today.

And Chase, he’s in his hyper pre-surgery zone now. He’s looking forward to a few days off school, some post-op popsicles, maybe being able to see better, and he’s already got “10,000 Reasons” ready to go on the iPad.

This is how we roll…

Moment by moment.

Whatever may pass and whatever lies before me, let me be singing when the evening comes… -Matt Redman, 10,000 Reasons

I’m A Cancer Mom

I originally wrote this piece a couple of years ago for my amazing friend Sheila as part of her Chicago Now Blog, Mary Tyler Mom.

Sheila is a cancer mom herself and every year, she fills the entire month of September (childhood cancer awareness month) with our stories. It’s a season that is not for the faint of heart, but then again, this is a life that is not for the faint of heart.

I know there are so many of you wonderful parents who identify with one or another of these things that have long made for extraordinary living. God bless.

I so look forward to knowing the purpose in the suffering.

In the meantime… Moment by moment.

I’m a cancer mom.

There are fourteen months of “there’s less than 20% chance”-beating treatment, over one hundred inpatient days, as many outpatient days, ER runs, ever so many blood and platelet transfusions, nine chemo therapy drugs, multiple surgeries, and endless procedures and tests saying that I’m a cancer mom.

But what does that mean to me?  Just this…

It means being wakened in the night by nightmares and then realizing it really did happen…I really did hear “There’s a large mass” pronounced over the ER bed of my 2-year old and there’s been no waking up ever since.

It means absorbing the sad looks and conciliatory touches to the shoulder and wanting to shout that we aren’t at a funeral yet.

It means “normal” defines any trip made to the hospital with myself behind the wheel instead of five-point harness-strapped into the back of a speeding sirens-and-lights ambulance while assuring him it’s going to be okay.

It means handing out candy at the door and seeing the looks on the costumed faces as they take in the too white, scarred, bald child at my side and ask their parents what he’s supposed to be while the embarrassed adults avert their eyes and move quickly away.

It means “fixing dinner” is preparing an 18-hour IV bag of nutrition and hydration and then attaching it to a tube in his chest.

It means watching a chemo being carried into the room…a chemo so light sensitive that it must be protected in a dark bag…and then they hang it and pump it into my baby.

It means being the grown up and saying; “You need to take your medicine even though it’s yucky.” to a red, tear-stained face when I want to sit down and cry right along with him.

It means listening to him whisper “I’m so brave” over and over as the medicine lulls him into a stupor and I hand him off to sets of surgical masks and scrubbed arms, knowing he’s going into the operating room and I can’t go with him.

It means that while other kids his age are learning to ride a two-wheel bike, I take joy in his remembering a words or learning to jump with both feet at the same time because in his world, that’s a really, really big deal.

It means there’s a kit in my purse that has gloves, alcohol swabs, clamps, and everything I need for a child with a central line and I carry it everywhere he goes….just in case.

It’s being up and out at 2:30AM, not for a party, but for an ER run in which I find myself praying that the fever goes down and the blood pressure goes up and that we can just be admitted to the regular oncology floor and not the ICU.

It’s learning to walk, and even at times run next to a child attached to tubes because playing makes them feel better.

It’s accepting the part of the living child forever lost to the moment his brain was open on an OR table and loving the living child he is today.

It’s feeling like I can’t breathe until I get answers and then they have none and I somehow go on breathing.

It’s allowing the child I swore to protect to go through intense seasons of pain, heartache and potentially life-long damage in order to try and save him.

It’s sitting by a hospital bed; a hundred percent powerless to fix anything and praying for the day the chemo stops hurting his skin enough that he’ll be comforted by a mother’s touch once again.

It’s holding him close next to the Christmas tree and answering “Mommy, will you hold me close so the death won’t get me?” without completely losing it.

It’s hearing that after almost two years of clear scans, there’s something growing and nobody knows what it is and the best thing to do is to wait and check again in six weeks and I find myself agreeing over the sound of my heart ripping open.

It’s knowing we’re out of options to cure his diagnosis and still getting up in the morning.

It’s coming to peace with the understanding that what I do may never change an outcome or what’s ahead for my darling son…and then finding the strength and purpose to make the most of every second of every day anyway.

This is what it means for me.

I’m a cancer mom.

In post-op after the MRI - February 2014
In post-op after the MRI – February 2014

Of Eyeballs And Living In The Moment

Sometimes it isn’t the actual doing of things that is hard, but it’s the thinking about doing things that lays us out on the floor and oddly teaches us dependence.

Chase has his first of two eye surgeries tomorrow (Friday), and we’re all a bit of a wreck over it. Which is ironic when you consider all he’s had done over the years. To have gone from major, major brain surgery with half his head lying open to fearing a simple outpatient surgery on one eyeball – that same procedure that very likely half the population over age 60 has done – it doesn’t make sense, does it? But fear never does make sense.

We are desperately out of practice with surgeries. Chase hasn’t had a single procedure for nearly two years, and so the thinking of tomorrow – even when we rehearse being strong and of good courage because God is with us – it’s been laying us out, or driving us up a wall.

Carrying this on his heart finally culminated yesterday morning in a knock-down, drag-out, complete and total refusal to get on the bus. He lay down on the sidewalk, and then he ran for the door and wouldn’t let go of the handle, and then he made it in the house and took a standoff posture in the living room, followed by clinging to the bannister while I tried to carry him down the stairs, and finally, a star-like posture with his arms and legs against either side of the doorway while I tried to get him outside again. This kid, he knows how to fight. You get the idea…

Right now, it sounds a little hilarious and completely like something out of a Calvin and Hobbes cartoon, but in that minute when he was screaming and pulling my hair, and the bus driver was honking and frowning at me, and I was pretty sure one of the drivers in the halted cars on either side of the street was about to call child services on the whole spectacle, it was awful, and I could feel myself sweating and freaking out right along with Chase.

He missed the bus and the morning got completely thrown off, but it ended up being the best thing that could have happened because I got him to one of his “safe zones” – the places he can escape to when he’s really worked up – and I wrapped him in his favorite, old blanket, and when he was finally still, we talked.

“Surgery.” He only spoke one word and his poor, broken eyes welled up with tears.

He recoiled as I began to speak comfort and logic and interrupted frantically, “But are they going to take my eyeballs out??”

Oh dear ones, I’ve said it before and I’m saying it again now because it took Chase in tears with secret, crazy fears and sitting under a surgery shadow again to make me realize afresh how desperately I needed to slow down and just be in the moment by moment grace of life. Sometimes, we all just need to sit down and reassure somebody that no matter how bad it all feels, our eyeballs are still going to be in our heads at the end of the day (or whatever your equivalent of this scenario might be).

Life is too important and too short to worry about what we look like to others or what happens to our perfectly planned days when the unexpected shows up at our door. (or ninja-refuses to step outside our door)

It’s time to keep our eyeballs in our heads, breathe deep, and love those around us in need. And if you think of it, please pray for Chase as he goes back into the OR tomorrow.

Moment by moment.

 

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If God Is For Chase . . .

“Mom, do we still have to go to school even though it’s your birthday? Can’t we just stay home? . . . Uh, to be with you?”

I couldn’t help but smile at the logic of Aidan’s plea. The part about actually spending the day with his mother was definitely an afterthought to the part about getting a day off school.  “Get ready, buddy. The buses are coming soon.”

The birthday breakfast had been consumed, Aidan and Darcy were preparing for departure, and Bob had taken Chase to an early ophthalmologist follow up.  It was another busy day and a part of me thrived on it as I stood in the middle of the living room and took in the backdrop of holiday lights around another morning with the ones I love.

The ringing of my phone on the table by the Christmas tree cut into my thoughts. It was Bob.

“Hey, we’re done with the appointment.”

“Good! He’ll be on time to school. How did it go?”

“Not great. Chase needs surgery . . .”

How things and feelings can change in a minute.  

“What! Why?”

“The cataracts.” Bob’s voice was subdued. “They’ve grown. The doctor said his vision was about 20/40 in both eyes the last time he was in and now, he’s 20/60 in one and 20/100 in the other.  It’s time.”

“Now?”

“After the holidays . . . after the next MRI.”  There was was the subtle suggestion that if the cancer came back, failing eyesight will be the least of our worries.

And with those few words over the phone, the light and joy seemed to ebb from the room.  I didn’t feel the holidays or the birthdays or anything, really. Just the numbness that comes with sad thoughts and the quiet whisper that has occasionally plagued for three years now: We did this to him.  Oh, how I hate that whisper when it comes at me. And how I wish there were never any threat of guilt in the sadness.  

In the broad spectrum of surgery, this isn’t that big a deal.  In fact, it’s quite routine, so that isn’t the heartbreak.  The part that makes my throat grow tight is that it’s one more.  It’s one more and they’re pretty sure it came from the treatments that saved his life.  

Everything becomes so mixed up in moments like this and the brokenness screams out over the good.

That afternoon, I sat with Chase and we talked about his needing surgery to help his eyes.  As I spoke, he took my hands in his. “It’s okay, Mom, it’s okay. Hey, look at me. When was the last time you smiled? Can you smile for me? It’s going to be okay.” So I smiled through the tears because you have to smile when Chase asks. He’s an old soul, my bald boy. And one more surgery needs to be scheduled with no guarantee that it’ll be the last. And the voice of guilt is never fully squelched; rearing its’ ugly head in the moments of greatest vulnerability. But in this moment, I need to keep close to the things I do know: If God is for Chase, not even a hundred surgeries and complications can stand against him because he is fearfully and wonderfully made and despite the sadness, my soul knows this to be true. Even when I do not feel or see it, God promises that His plans for Chase are good and are lovingly orchestrated to give us hope.

These truths are the only lights that banish the sadness. 

Choosing joy in the pain . . . Moment by moment.

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Looking For Still Waters

Monday
With a long but encouraging clinic day behind us, I gently lifted Chase onto his hospital bed. We had just finished several rounds through the halls on the tricycle and he was finally ready to rest. After chasing him with a rolling IV poll and protecting/pleading for caution with his central line, I was also ready to rest. As I lifted him, his face contorted in pain and he let out a warning scream -I’d seen it a hundred times at home- the line was pulled tight and the IV tubing stretched from the pole to his chest. I quickly gave it slack and laid him down. He’s an active boy – this happens all the time.
Then he contorted and grabbed his chest, still screaming and crying – this did not happen all the time. With an all too familiar feeling of dread, I raised his shirt to see dampness around his central line dressing. Not again, please, not again.
The doctors and nurses confirmed what we feared. The line had been partially pulled from his chest when the IV tubing caught on the pole. With his new central line -a port- this wasn’t the same problem it would have been, say, two weeks ago – just remove the damaged needle and put in another one. The main features of the access are protected under the skin. It would have been so easy but for the chemo. There was chemo infusing when the needle moved and a particularly vicious one at that. Known for harming tissue and muscle; there was a small but very real chance that instead of going into the vein, the damaged needle had spewed this poison into the muscle around it.
For several hours, there was an intense spiral: immediately discontinue use of the port….apply ice…had we heard about the antidote?…IVs needed in his hands to keep him hydrated…surgery for a temporary line in the morning…and on it went. The door to our room was a constant portal to more poking, prodding, and bad news. Please God, no more…
In the early afternoon of Tuesday, for the second time in about 24 hours, Chase was taken into surgery to place a temporary line. Moments before he went into the operating room, I received a text saying that a friend of our dear friend would be the nurse on duty in the room. I can hardly explain the encouragement it is to send your child into that cold, dark, unconscious place with a familiar face and friend at their side. A blessed moment in the chaos.
Despite the completed access surgery, there will still be more unfolding consequences of that malfunctioned needle. His hands are bruised and scarred from all the IVs, both failed and successful. He shows signs of the broken trust that comes from hours of people touching and hurting as they’re trying to save your life – anytime someone enters the room and greets him, he screams “No!”. The port must be left alone for at least a week -maybe two- to guard against the chemo damage, and when he leaves here, with his temporary line (in his upper arm…again), we will have to vigilantly continue to watch for the signs of that wretched drug doing its harm.
The irony of these last two days is that when you’re first given your child’s diagnosis, you expect that horrifying knowledge to be the all-encompassing stress and grief. In this moment, I can assure you that -at least in our case- it’s the little things, the daily, the back-and-forth, the multiple procedures. Those are the things that kick you when you’re already down.
But…
In this moment, he’s laying on the bed sleeping peacefully. …snoring, actually. His punctured, bandaged and tubed arm propped on pillows. His mouth relaxed from its pained expression.
Peace.

“He leads me beside still waters. He restores my soul.” Psalm 23:2b

Moment by moment.

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