“The prognosis for AT/RT has been very poor, although there are some indications that an IRSIII-based therapy can produce long-term survival (60 to 72 months). Two-year survival is less than 20%, average survival postoperatively is 11 months, and doctors often recommend palliative care, especially with younger children because of the poor outcomes.” -Wikipedia on Atypical Teratoid Rhabdoid Tumor
Tomorrow, February 6th, is Chase’s first truly post-treatment MRI. The first real chemo-is-all-out-of-your-system, three-months-without-a-single-drug-to-guard-against-relapse, have-your-sleep-patterns-changed, why-did-you-forget-that-word, you-fell-twice-yesterday… MRI.
Tomorrow, there will be two doors. Behind Door #1 is the clear scan and the sigh of relief and the three month wait until next time. Behind Door #2 is relapse and all the possibilities that it brings. Writing that thought down leaves me sick to my stomach, but the truth is, we’ve known about Door #2 since the early days of August 2012. So, even if it comes to that horror, there will likely be few surprises.
People say in mistaken comfort “Yes, but what are the chances…?” For a parent of a child that only ever had a hairs-breadth percentage of getting cancer and this cancer and surviving this cancer, the chances hold no comfort at all.
The only comfort is in knowing that I am invited to bring my worry to God, and then not worry about it anymore, because He will guard my heart and my mind. The only comfort is knowing that all of our days were counted and known before we ever breathed, that we were fearfully and wonderfully created, and our very souls cry out with that thought. The only comfort is knowing that all our pain and suffering is but an earth-moment, and then we’ll stand in the presence of our Savior, understanding the promises and knowing no more pain or sorrow or tears–only closeness to Him forever.
I know those truths. I believe those truths. But as I stand in front of these two doors, my heart is still heavy… what now?
“The Lord will fight for you, and you have only to be silent.” Exodus 14:14
Silence? My make-it-better, make-it-stop, never-give-in heart wants no part of that. Silence is accepting defeat. Silence is acquiescing… isn’t it? Being silent is one of the hardest things for me to do, yet I’m called to do it in this moment. And as I obey, not speaking becomes speaking. The quiet becomes loud. We will watch and see what unfolds as we remember how far we’ve come, and know beyond a shadow of doubt that the same grace that covered all waits always, ahead of us, behind any door.
The doors are in place as they always have been and will be… The right thoughts are known and remembered time and again… and now?
Today is a day we set aside to count our blessings and stand for the fighters. We stand for Julia and Phoebe and Cal and so many others who won their fight and are finally home. We stand for Matthew and Mia and Lucas and Zeke and so many others who continue their fight right here even now. And we never give up. Because there is strength and purpose in what we’ve been given (horrible as it is) and we believe that someday, whether in heaven or on earth, there will be no more cancer. So we mark this day and stand.
When you have a 6cm brain tumor removed at 2.5 years of age and go through months and months of rigorous treatment, all bets are off regarding development. Often, you hope for delays “at best” as the worst is too hard to think about unless forced to do so.
Last night, I sat across from Chase as he made valiant attempts to match and fold his favorite yellow hospital socks and this morning, as he placed another Superman sticker on his “potty chart” I stopped and I marveled. These things are small and normal milestones to most children, but for Chase, and for all cancer kids, some of these things are beyond huge.
You see, it wasn’t too long ago that teams of doctors waited post-surgery to see if he’d even wake up…or talk…or walk. Celebrating these little big things today.
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!
