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
Chase’s doctor once told us that most parents know it’s time for more chemo when they see their child looking better, eating more, and having more energy. Proving this theory, Chase’s Thursday lab results were really encouraging which means we are scheduled to go back to the hospital on Monday. It’s time. This particular round of chemo includes several days of being admitted to the hospital as well as a spinal tap under anesthesia.
You may remember that I wrote at one time about Chase’s vivid anesthesia memories. Since that time, we have had really good experiences because he has been given a “forgetting” medicine in pre=op -while still with us- that relaxes him and saves him the memory of a sterile operating room and a mask over his face all without the comfort of mom or dad.
Because of some aspects of his new central line, Chase’s nurse will be removing the needle from his chest a couple of hours before he is scheduled for the spinal tap. It’s a little tragic as there will be no shower or swimming pool to jump in and celebrate [children with the type of central lines he’s had until now can’t really bathe or swim], but mostly awesome as he has never officially been without his “tubie”. However, there is a direct impact on the procedure. The lack of needle in his chest means that there is no good way to administer medicine in pre-op, which means that Chase will go into the operating room by himself and be put under anesthesia while fully concious.
We have been talking about it every day. How he will be a brave boy, and how he will take a deep breath and fall asleep, and even how -if he can be still- the doctors won’t have to hold him while they put the mask on his face. He dialogues with us, and understands what he needs to do, but he is still very frightened.
Please pray for Chase on Monday, that he would be anxious for nothing and that God’s perfect peace would surpass and even confound all of our understanding about how Chase would most likely respond in that operating room. (Philippians 4:6-7)
This will be a big step for him and for all of us…but our God is much bigger.
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)