Chase – Page 18 – CHASE AWAY CANCER

Do You Hear What I Hear?

I’ve written about Chase’s lack of hearing before.

The tiny room…

The sounds I can hear that he doesn’t…

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 — 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 :) — He feared the giant headphones and we told him that he looked like an airplane pilot 🙂

One More: The Last…

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

Rockin’ With the Sox

Chase’s next chemo treatment has been delayed due to a staph infection (which he’s being treated for at home, and he feels fine), so his blood counts are GREAT, and he feels really good, so this break is allowing us to do some cool things, like GO TO A SOX GAME!

A few months back, someone called the White Sox and suggested that they might help our family out in some way, and the White Sox were SO generous to give us a suite in this last Saturday’s game against the Cleveland Indians.

Chase was so excited to go…

We had some church friends that were visiting from Delaware, so they were able to join us, too, as well as some other old (and new) friends who were at the game, too:

Our family had a great time (and the kids got a cool hat and shirt, too)… thank you, White Sox!

Looking For Still Waters

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

Moment by moment.

Facing A Fear

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.

Learning to let go… Moment by moment.