We sat at the long table in the restaurant. A table full of friends who had invited us to join them and we’d agreed. I looked at Bob and he looked at me over the wiggly, wriggling heads struggling to sit still like grown-ups do. How crazy were we to say yes to a restaurant with three little boys in tow?
Chase especially struggles to sit still (a running family joke given his name), and so he’d sit for a while at the table and then as a reward, I’d get him up and let him walk around and back before sitting a spell again. And I watched people watch him… His shoes are like the shoes of other boys, his clothes and eyes and energy and everything else…and then his white, white head and the slightly faded, but oh so noticeable scar that runs the length of skull and you can see the looks of pity, the politely averted eyes. I don’t blame them. I’d do the same thing. I find myself wanting to run up to them and say “It’s okay! Look all you want! This is a miracle in front of you!“, but instead, I smile, move on and caution Chase not to trip the servers in his enthusiastic dash.
You see, sometimes being out in public with a visibly chemo-worn child is like stepping in front of a mirror. When we’re home or with good friends, we’re just us and everybody knows Chase. But when we step out, like that day in the restaurant, it’s a mirror. Stop. Look. We’re different. This scar says our life looks nothing like yours. The loudest of reminders in the slightest of glances.
And then, a family approached our table. They spoke of mutual friends and places from years past, they knew Chase from his Facebook page and they prayed for him and they’d recognized him. And then they encouraged us with their words and pressed a gift card into our hands. “Your lunch is on us“, they said. And then they were gone.
The gift card sits as a reminder with my papers – you just never know. There in the mirror that day, there was fellowship and joy because of the recognizable scar.
So pay it forward, play it back, make it right, stop to help – don’t be afraid to make eye contact because you never know when you might be staring at a miracle. And you might be stepping next to a battered parent in front of a battered mirror and showing them joy.
I used to write about trips to the hospital that were mere hours apart, but since the holidays, we’ve been incredibly blessed to make the drive only once a month. A whole month! That’s an obscene amount of time away from the hospital! We are so thankful because our time away means that Chase doesn’t need that kind of care, but we also miss it…just a tiny bit. The facility became our home away from home and the staff became our companions. The rituals we formed there were comforting and secure, so there’s a small part of us that misses it. …but just a small part. Once a month, though the chemo is done, Chase needs an antibiotic to keep his body safe from the port – an otherwise foreign device surgically implanted under his skin that will stay in place for months to years as it’s still used for medications on occasion.
This last week was our once a month visit and it began with the checking in. When Chase was truly ill in the worst months of his treatment, he would lay in his stroller and pull the canopy over his head to keep LaToya from flirting with him as she checked him into the computer and prepared a red (signifying his platelet allergy) bracelet for his wrist or ankle. Now, even though he feels better, he still “hides” from her and flirts outrageously as she laughs and calls him “Mr. Chase” and treats him like the only child in the whole hospital.
After checking in, Chase walks around the corner to a height and weight station. Here, his chart is handed to one of the nursing assistants who will walk him through getting his height, weight, a blood pressure check and his temperature. This is the moment I dread… You see, Chase fights these tiny, harmless things far more than he does surgical procedures. The CNAs take every effort with him, but Chase fights it tooth and nail…every time. Because the two surest ways to get Chase to do anything are to tell him not to do it or challenge him to do it, we “race” for the vitals. One parent stays to help Chase focus while the other takes off at a run to do a lap around the entire oncology floor. The parent doing “the lap” has to try and get back to the height and weight station before Chase finishes his vitals. Of course, the parent chosen to run never beats Chase and always comes through the door right after Chase finishes vitals as he jumps out of the station and into the hallway -usually brandishing a thermometer wildly in hand- screaming “I winned you! I winned you!”
Chase and Bob doing vitals in June 2013
After this display that undoubtedly leaves staff wondering if we should all have our heads examined, we are taken to the other end of the floor to the infusion center or “day hospital”; a large area full of small rooms (not unlike bays in the ER) outfitted with reclining chairs, TVs, etc for patients who need treatment that doesn’t require overnight admission. Our times here can range anywhere from a 30 minute platelet transfusion to hours and hours of chemo and pre/post chemo hydration.
When Chase was in treatment, he was always “accessed” (the needle was always in the port), so they could just hook him up, but now that he’s healthier and “deaccessed”, he’s crabby and whimpering with each new staff person that passes through the sliding glass doors of our room as he knows that somebody has to put the needle in his chest and he hasn’t figured out who it is yet or when they’re going to do it. I introduce him to Emily, his nurse, the woman who will “access” him today, and encourage him to talk to her about what’s making him scared. She tells him what she has to do before she’s ready and gives him about ten minutes before it’s time. He whimpers and sucks his thumb, but we keep him busy. We decide to run out to the waiting room and raid the kitchenette for some graham crackers. The key to managing Chase’s energy (from fear or otherwise) is just to keep him moving. On our way through the halls, we run into his beloved Miss Lauren and Dr. Rishi. Chase hugs Lauren and gives Dr. Rishi a “fist bump”. My heart is always full when his primary team get to see a healthy Chase in a healthy interaction. They know all too well the kicking, screaming, hysterical Chase and I love when they get to see the other side of it.
Chase with Dr. Rishi and Miss Monica (another beloved nurse) in the infusion center in November 2013
Little about accessing Chase has changed since I last wrote about it. I don’t know that it will ever be easy for him, and I don’t know that I’d ever want that. Chase was born to fight. He begs me to pray with him because he knows I’ll never say no to that and he knows that praying will delay the needle going into his chest. Emily bows her head with us and echoes our “Amen” as we finish praying for his heart to be calm and her hands to be sure. We still hold his arms and legs. He tries so hard to be still, but the self-preservation instinct is just too strong. So, we protect him from himself and for himself. And he knows…he knows the exact moment of the procedure that it becomes less scary and that his arms will stay open and not close protectively on his chest and then we can let go, and he’ll let out a shaky breath and smile and say in a voice extra squeaky from screaming: “See? I’m okay! I can do it by myself! I’m so brave!” And there’s the rush of relief as the tube from his chest turns red with his blood – the sign that the placement was sure and true. The tape goes on and then his shirt, and now he’ll be friendly to everyone he sees.
His antibiotic is sent up from the pharmacy. It will run through the tubes for almost two hours and it’s protocol requires bloodpressure checks every 15 minutes. That’s right. Every 15 minutes. The nursing assistants all know Chase and all have wonderful senses of humor, so sometimes we watch a movie and sometimes we race and sometimes they bring a portable machine into the playroom down the hall and get him to hold still as he rolls matchbox cars across the floor. And if the number is too low or too high, it must be repeated, so as you can imagine, for a child as active as Chase is, it’s usually a “best three out of five” scenario…every 15 minutes.
Playing with Grandma in the playroom, Summer 2013
Almost as often, he needs to be reassured that the needle will come out when the medicine is done…that his “butterfly” (his name for the huber needle – as when it lays on his chest, the flattened handles resemble butterfly wings) won’t be coming home with him…and that he won’t have to sleep in the hospital that night.
We greet the staff and catch up as if we’re old and dear friends. We talk with his nurse practitioner -after coercing her into carrying all sorts of playroom toys back to his room- and Chase asks her to pray with him about his cancer. We talk to the doctor that we don’t usually see, but who’s studying Chase and others like him to see how chemo and flu vaccines interact. So many good conversations. So many dedicated people.
Then the syringe pump beeps it’s two minute warning and the tubing is ready for the “flush” and suddenly, it’s time to take the “butterfly” out. Chase screams a little and needs his hands held, but nothing compared to when it goes in. He wipes the tears from the corners of his eyes and -virtually bounding off the bed- thanks Emily and makes a run for the door.
He jovially calls goodbye to everyone in the halls and as we pass the conference room where the doctors convene, he spots Dr. Rishi and turns back to say goodbye. Chase speaks for a moment and then, turning on his heel, breaks into a run, prompting the doctor to look worried and call a warning after him. Dr. Rishi knows all too well what happens when Chase starts running in a hospital. (hint: it usually ends in his signing orders for Chase to have an MRI…)
On the way back downstairs, we stop by the inpatient floor and look for Courtney and Ashley and all his nurse friends from the days of sleeping in the hospital. He finds “his Miss Courtney” and pretends to be shy, but after a minute, he warms to her and every other nurse he sees, and before you know it, he’s practically running for mayor of 17 North.
We take the elevators all the way down and he begs to ride the wide-open escalator under the whale to the first floor lobby. As Bob gets the car, we ride down the escalator, and then back up, and then down one more time just because we can. And through the glass walls, giant snowflakes fall on the city.
Riding the escalator on a visit with Grandma Judi, Fall 2013
So many friends, so many tiny rituals and habits in our home away from home…
Our once a month hospital visit… Moment by moment.
In the car on the way home this week – see the soft lines around his head? His hair is growing!
The frustration in our home as he calls and calls desperately across the house, never once hearing us answer…
Since his doctors surgically cleaned out his ears, the intense frustration has seemed to improve a little. Now, he seems to be able to hear a voice from across the room, but perhaps that’s just wishful thinking on our parts. After all, we know the collateral damage we signed on for when we started this journey.
Stimulating his hearing through his skull – fearful and wonderful
And yet…
Today, as we wrapped up the audiology exam, she sat down and smiled: “I don’t usually get to tell people this, as it often goes in the other direction, but…his hearing has actually improved!” The procedure performed in November (when he was under anesthesia for his MRI) was successful and his hearing is within normal ranges in several areas. His high frequency hearing is still classified as “poor“, but even that has improved from the “unresponsive” conclusion on his last test.
Even as we both celebrate these results and wonder about the results in six months time, I am reminded again of these words…
Chase doesn’t need perfect hearing to hear the voice of God.
Thankful.
Moment by moment.
He feared the giant headphones and we told him that he looked like an airplane pilot 🙂
This afternoon, I received the call I’m always waiting for – the first of the twice weekly lab results.
This afternoon, I received news I’ve been waiting to hear for 14 months – “Chase’s counts are coming back, and quickly. We’ll repeat labs on Thursday, but barring anything really crazy, he should be ready to restart chemo on Monday. This is it!”
This is it. The last chemo. The last spinal tap. The last…
A small part of me is choking as I’m writing “the last“. The part of my brain that reads and absorbs cancer research is screaming “The last? You know better than that! This cancer is never over!”
But tonight, for now, for next week, it’s the last.
Joy.
I can’t believe we’re actually at this point. And for all the rest that we have yet to walk, we’ll take it as it comes…
Moment by moment.
It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8
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
