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 🙂
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?
Sitting in the sound-proof room for the hearing test, I repeatedly glanced at the vent on the wall to remind me that there really was air flowing into the room. With a ceiling just over six feet tall and a floor space of not much more, it didn’t take imagination to feel like the room was closing in.
Having finally submitted (after a long struggle) to wearing headphones, Chase sat on my lap, waiting as he had been instructed to put a piece of the puzzle into place every time he heard a sound.
A high-pitched noise rose muted from the headphones – as loud as a scream in the quiet room.
Chase sat unmoving. He heard nothing.
The sound came again – this time, louder.
Still…nothing.
It’s hard to describe the sadness…sitting there, hearing a noise that he should hear and letting the knowledge sink in that he did not hear it. There are moments that I fight guilt for feeling this sadness. After all, my child is alive. Seven months post diagnosis and he lives and breathes! How dare I feel sad? But I do. Observing these “collateraldamages” of the cancer and treatment are intense and challenging even though we fully acknowledged the risks involved many months ago.
Finally, the tenor and volume of the sound changed and Chase immediately sat to attention with a gasp and practically threw the puzzle piece onto the board. He had been waiting a long time for the sound.
After the test was complete, they showed us a paper with a graph – a gray bar along the top of the chart. Pointing to the gray, the tech explained “This area here is considered ‘normal’ range…” and as she continued on, I studied the graphed lines – not a single part of which were in the gray. I answered the questions as they came: yes, we had noticed his hearing was bad, yes, he does struggle to form words…
Yesterday, we met with more doctors and confirmed that there is most likely damage from tumor and treatment, but there is also a lot of fluid (a common problem from radiation). It was decided that it would be in Chase’s best interest to have a minor surgery to drain the fluid and put in tubes. It may not restore his hearing, but it will hopefully improve it and at least give the doctors a more true idea of what his hearing range is.
As admittedly silly as it sounds, I had hoped and prayed the the solution might be non-surgical, but that wasn’t meant to be. As we processed this news yesterday, the words to a favorite song came to mind: “Whatever my God ordains is right, in His love I am abiding. I will be still in all He does, and follow where He is guiding…” conluding “He holds me that I shall not fall, and so to Him I leave it all”.
With these words fresh in our minds, reminding ourselves of God’s perfect plan for Chase and clinging to the promise that we will not fall, we press through these sad side effects. After all, as I was lovingly reminded by a dear friend:
“Chase does not need perfect hearing to hear the voice of God.”
Moment by moment.
[Surgery date is set for Monday, March 25th as Chase will be in the operating room already for a lumbar puncture and chemo]
![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)
