“Okay, let’s just get your temperature and then you’ll be done.” The nurse turned from the blood pressure cuff attached to Aidan’s skinny arm and grabbed the thermometer, shoving it into a sanitary plastic sheath with a soft click.
“Open wide . . . under your tongue . . . now close.”
The room was still as Aidan sat tall, silent, and brave (despite his strep throat) on the end of the exam table.
With an unusual calm, Chase pulled himself out of the chair against the wall where he’d been sitting next to me, and he went to stand closer to the table – in his older brother’s field of vision.
“I’m here, Aidy,” his pet name for his near twin from the earliest days of learning speech. “I’m here if you need me. It isn’t scary, but if you get afraid, I’ll be right here.” Nearly the identical words a three-year-old Aidan had spoken countless times over a two-year-old Chase during myriad blood draws and hard hospital days. “I’m here.” I choose to put myself next to you and try to understand.
Cancer starts as these tiny microscopic cells that go terribly wrong and it wrecks so much life. It makes me angry to consider its senselessness. But in this moment of family practice and strep throat and a check for vital signs, there was yet another glimpse of beauty in the devastation they’d caused. The boys have been bent by it – we’ve all been bent by it – but in those times when it really counts, especially when it comes down to a doctor’s office, they bend toward each other. They reach with comfort and love for one another. And care for each other has come from the long years of fear and pain.
I believe there will always be something good that comes of it all and that the God-purposes far exceed the effect of microscopic cells. . . moment by moment.
“You intended to harm me, but God intended it all for good.” Genesis 50:20a
Chase is not known for sleeping. Since the time the tumor first started growing when he was two, he often struggles to fall asleep at night and wakes long before the sun. From the moment his feet hit the floor, he’s going, doing, and often messing around.
When he got off the bus on Tuesday afternoon, he didn’t ask to play outside, but came in quietly, telling me he loved me and missed me. Don’t get me wrong – a docile, loving Chase is wonderful, but it’s also unusual. Most often, he walks to the door fighting to stay outside with a verbal list of all the things he wants and needs to do as he hits the front stairs. That night, as we sat down for family reading time, he laid his head on my lap and fell asleep . . .and then he slept ’til 6:30 in the morning. When he woke, he did not speak much, but went back to his room almost immediately, laying curled in a blanket on the end of the bed. Within minutes, he was asleep again.
My philosophy in a household of small children (read: boys) is “Fear The Silence” because it usually brings no good, and for Chase, this holds ten times as true. He is never still unless something is wrong. This child who sat at the breakfast table next to siblings without eating or talking – for twenty whole minutes – he looked like my child (only more pale), but I couldn’t find the pulse of his personality and that was terrifying.
Is there an increase in pressure within his skull?
Is something growing?
Is his speech changed?
Is he unsteady on his feet?
Does he seem cognizant of his surroundings and memories?
Could his hemoglobin have dropped?
Is he having any muscle tremors or signs of seizures?
Does his head hurt?
These are just a few of the well-worn panic paths my brain circles as I move into the routine of checking his forehead, looking down his throat, and asking where it hurts.
It’s quite likely that Chase was just under a hint of a virus. That’s another part of who he is. The other kids get crabby or possibly lose their appetite when they get sick, but Chase . . . Chase gets “neuro”. His speech and sleep patterns change and he often grows even less tolerant than normal – all over something as simple as a runny nose.
And me? I worry. That is my damage. I may stand still and breathe deep, but in my mind, I’m all-out sprinting across nightmare trails. The years old sentence: “There’s a large mass” opened the gates wide to every conceivable worry – and often with good reason. So once again, I ripped into the past to justify my present and by 9:00 in the morning, I was mentally on the ground, gasping for a saving thought or grace.
“Be anxious for nothing” – Yes, it’s in the Bible and sometimes I don’t know why because sometimes it feels unmercifully impossible. But like every other word in there, it has purpose and it cheers me greatly to think that God put it in there because He knew we’d struggle. And how I struggle.
This morning, Chase beat the sun by a good half hour and was back to his doing, going, and messing self, boarding the bus with a smile. It was most likely just a little virus.
And for me, there’s the quiet, hard knowledge that there is no end in sight. At this point, the only best cure for cancer and worry is heaven. I’ll probably go back to his diagnosis every single time something is even slightly off and I’ll worry myself up until I’m panicking on the ground again and hate myself for it.
And then I’ll need to hand it over once again, give it up to God who knows and loves, and wait in the grace of the . . .Moment by moment.
“Surely your goodness and unfailing love will pursue me all the days of my life.” Psalm 23:6a
As I break my non-blogging streak and think about the last several weeks, I find myself reflecting on perspective. I will get to that in a minute…
On March 25, Chase had his ear surgery. We don’t yet know how successful it was (he will have a follow-up hearing test at the end of May), but as we sat in post-op, he turned to me and said “Mom! I can hear!” I cried. His expressing this was all the more amazing because we had prepared him for putting tubes in his ears, but we didn’t set him up for any results.
That moment in post-op
We finished four days of chemo on Thursday of that same week and just as we were so close to discharge that we could practically taste it (if hospital discharge orders were something you could eat), Chase spiked a fever and we had to stay for several more hours until the staff could better understand the cause of the fever. Such are the hazards of having a central line. We were finally discharged late that evening.
Because we had spent those extra hours getting blood cultures and antibiotics started, when Chase spiked another fever around 3:00AM on Friday morning, it resulted in a simple phone conversation with the (incredibly gracious) oncologist on-call and not a summons to the emergency room.
That Saturday (the day before Easter), Chase again spiked a fever and by this time, his Thursday cultures needed to be redone and so we were sent to a local emergency room for blood work and more antibiotics. A small part of me wondered why he never seems to get fevers in the middle of the morning.
Chase was mercifully discharged from the local ER around 12:30AM and we all got some sleep and were fever-free enough to go to church together on Easter Sunday morning. One word: glorious…and refreshing…and encouraging (Okay, more than one word…because it really was that precious).
Happy Easter
As we drove home from church, I glanced at my phone’s call log and saw the (way too) familiar area code…I had just missed a call from the hospital. “There was a bacteria found in the culture from last night. It’s in both lines and it’s growing fast. I’m not saying you have to drop everything in this moment, but we need you to get Chase here sooner than later…and make sure to pack…you’ll be here overnight.” …and just that quickly, the holiday was over. We’d managed to stay out of a hospital for a whole twelve hours. As we pulled out of our driveway minutes later -still in our Easter finery with our hastily packed bags- and we waved goodbye, I felt a weight descend…it shouldn’t be like this.
In the ER on Easter
Chase cleared his infection (the origin of which was never completely known) and we were discharged within a couple days as he had no more fevers. In fact, he was the only one in our family who stayed healthy as all the other kids went down with a high fever virus that lasted for several days.
During the same period, Chase’s counts dropped from the chemo and we were back in the day hospital for transfusions. Chase was in isolation, but did have the privilege of meeting Chicago Blackhawks captain, Jonathan Toews. Chase tried to offer him a basketball. To Toews’ credit, the professional hockey player was very gracious. That same day, the son of a dear friend was in surgery at the hospital. Putting aside a long story for another blog full of interventions and orchestrations; if we hadn’t been there for transfusions, we would have missed a great moment to serve and encourage our friends.
Meeting Jonathan Toews. Note the basketball in hand. 🙂 [photo courtesy of the Chicago Blackhawks Facebook page]Transfusions complete, we waited for days…just waiting for Chase to get hit with the virus that all the other kids had. Then, we got a call from his nurse saying that they were all surprised to find out that he’d recovered from the chemo much sooner than expected and he didn’t need any more transfusions. Translated: we could stay home and rest. The worst of the cycle was over.
We rested all week and then returned this past Tuesday for the big, under-anesthesia, check-the-whole-brain-and-spine MRI. After three months, was the cancer still staying at bay? Would there be a recurrence seen in the pictures? No. We have yet to discuss the scans in detail (we will see the pictures on Monday in clinic), but the bottom line was this: things look good. Chase’s attending neuro-oncologist said that this is what is hoped for and desired. Another clear scan.
…and to this day, Chase still hasn’t gotten sick. The doctors believe that the antibiotic he was on for his line infection protected him from all the germs in our house.
So, if we hadn’t had the fever before we left the hospital, we wouldn’t have been able to stay home on Friday, and if we hadn’t gone in on Saturday night, we wouldn’t have been able to be in church on Sunday morning, and if Chase hadn’t had the line infection (which caused us to miss part of our Easter holiday) at all, he would never have been protected from the flu and pneumonia in the house. …and if he hadn’t needed transfusions, we never would have been there for our friends and been able to connect with some really cool Blackhawk fans. Some correlations are more obvious than others and for some things (like the scan) there is little correlation at all; just joy. But for the rest: perspective. This season continually reveals to me that what seems sad and wrong often leads to visible grace and beauty.
As I look back on these weeks, how will I choose to remember them?
![Meeting Jonathan Toews. Note the basketball in hand. :) [photo courtesy of the Chicago Blackhawks Facebook page]](https://i0.wp.com/efamily.brevis.me/wp-content/uploads/2013/04/Toews.jpg)