Monthly Archives: January 2014

Of Butterflies and Escalators and Running In the Halls…

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

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

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

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

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!

In the car on the way home this week – see the soft lines around his head? His hair is growing!

The “NEDiversary”

This date marks another very special, stone-of-remembrance day.

One year ago today, we sat in a conference room with Chase’s doctors, staring at a large screen on the wall as it projected images of his brain from July 2012, October 2012, and finally, January 17, 2013.   The initial summer horror, the fall realization that treatment wasn’t making progress, and than this winter wonder…  On an MRI, cancer cells look like areas of white to our untrained eyes.  White balls, white spots, areas of white shading.  Before us now, we viewed pictures of a small child’s brain…with virtually no white.  In shock, we absorbed the words… “There appears to be no evidence of disease.

I remember seeing their wary smiles and hearing the phrases of cautious optimism and not knowing how to respond.  They were telling us that Chase was okay without telling us that Chase was okay.  The tenuous relationship between pain and beauty, good and bad is everywhere.  The cancer appeared to be gone, but nobody trusted the take-no-prisoners classification of this “AT/RT”.  That struggle is reflected in the words I wrote a year ago today:

I’m wrestling as I write and erase, and write and erase again.  I don’t think I’ve ever written such exciting and positive news in such a tentative way.

This day is funny and strange, because happy news doesn’t erase Chase’s pain and suffering, even as it potentially extends his life.  There will still be fevers and transfusions and frequent hospital stays.

Many things ahead will be subject to constant change, but there are some things that will be as they have always been: God’s incredible grace to us, our complete need for Him to rescue us, and the never-ending necessity of living in a moment-by-moment existence.

As Bob and I prayerfully thanked God over Chase’s hospital bed in that first breath of knowledge, we were released from the cancer burden to exult.  And now, we turn towards what is yet to come, acknowledging that it is all–the good and the difficult–a precious gift.

Looking back a year later, it has been every bit of suffering and constant change that we thought it would be – plus, much more that we’d never dreamed of, but it’s also been a precious gift and God’s grace has abounded – often much more than we’d ever dreamed.

I closed those first tenuous thoughts with these words that ring as true as ever and are an often needed reminder as we prepare for another MRI, Chase’s first three-months-with-no-treatment MRI next month:

Our soul waits for the Lord; he is our help and our shield.  For our heart is glad in him, because we trust in his holy name.  Let your steadfast love, O Lord, be upon us, even as we hope in you.  Psalm 33:20-22

Today, we celebrate one year with “No Evidence of Disease” – the NEDiversary, if you will… and we continue as we always have and always will…

Moment by moment.

[Thank you for continuing with us.  Your support means more than you know.]

Chase with his awesome attending neuro-oncologist in January 2013

Chase with his wonderful attending neuro-oncologist in January 2013

 

2014: Looking Forward In Our Own Words…

Last year, I had the family look back on 2012 in their own words.  This year, with a concussion-induced writing break and the first part of January already slipping away, I asked them to look forward.  As I reflect, it actually seems more appropriate.  2012 ended in a way that we needed to sit and process.  2013 ended on a decidedly different note – one that has caused us to look forward with great expectancy.  So here we are in our own words…

Darcy (7):  “This year, I want to go back to our old house.”  [Since Chase’s diagnosis, we have lived with grandparents for immediate and constant assistance – a thing we could not do without –  but our kids miss our condo, and in truth, “our old house”  often means “our old life”.  How I wish I could snap my fingers and give that to them.]

Aidan (5):  “This year, I want to go to Lake Geneva!”  [I’m pretty sure this is the first thing that popped into his head, but it’s his story and he’s sticking to it.]

Chase (4):  “This year, I just want for to have no more cancer and The Polar Express.”  [I don’t think there is anything I could say to elaborate on this.]

Karsten (2):  “I want to sit on my bottom!”  [At the time I asked Karsten about his 2014 plans, he’d just been ordered to “sit on his bottom” at the dinner table because standing on his chair to eat his soup was deemed inappropriate.  In all fairness to him, that’s an excellent goal for 2014 and a much needed one.]

Bob: My thoughts on 2014 center around motion and growth.  We’ve been stagnated under the immediate and the urgent for so long.  Now, we have this chance to move…to be in forward motion, if you will, away from the treatment and the upheaval and to be out from under all of that.  I look forward to 2014 being a season of moving forward and growing in many facets.

Ellie:  In a small way, I echo Bob.  My hope for 2014 is that we find our place.  We have been wanderers in the treatment phase for so long – I’ve written a few times about the urgency that barely allows you to make eye contact with life, and now, we’ve been granted the great gift of a reprieve.  It’s terrifying to stop fighting and live, but it’s amazing to stop fighting and live.  We’ve been given this gift of life – now we actively seek God for our place in it and the courage to assume what He has for us when He makes it clear.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  Jeremiah 29:11

With great hope… Moment by moment.

Christmas 2013

Christmas 2013