Usually, I would only post this on Chase’s Facebook page (and it’s actually up there too – apologies for the double time), but he was just so cute, I had to share on the blog as well. Chase loves the White Sox and makes a point of taking his special baseball (and as much gear as I’ll let him take) everwhere he goes…even into the MRI machine! Every Thursday is a lab day and this morning, Chase refused to do his labs until he was properly suited up with his “gear”.
Chase shows his colors
[note: that large monstrosity in the foreground is Chase’s 20+ pound, 16 hour IV bag]
On several occasions, I’ve referenced Chase’s central line, his weekly labs and his dressing changes, but today, I’ll be a little more specific. This morning, we took pictures of Chase’s dressing change. The hope is that he could see what’s happening from a different perspective and that it would help him overcome his anxiety.
I need to preface these images by saying that it is necessary to hold Chase down with very little mercy for his own protection. Despite months of talking, processing, and role playing, he becomes protectively enraged, and rightfully so, when anybody even gets close to his line and he must be still for a successful change. When the dressing is off, one can’t even breath in the direction of the line without risking contamination…hence the nurse’s mask and our heads turned away from the uncovered site.
As I debated whether posting these pictures serves a helpful, edifying purpose, I decided to write this piece and use the pictures because this is part of our every week and even if you must look away (and I wouldn’t blame you if you did!), I hope it will encourage you how to pray for Chase (and his family) in more specific ways.
Stripping off the old bandage
After being restrained on a flat surface by no less than two people (but preferably three…or four), Chase’s old bandage is stripped off. This is without question the most tedious and the longest part of the entire procedure. This is an area that we hope and pray tubes in his ears will improve. When he’s screaming at the top of his lungs, he is unable to hear our assuring, calming words in what I can only imagine is a complete nightmare for him.
The central line
Here is a great and close view of his central line – and his poor and chapped skin, raw from months of bandages and tape. These moments after the bandage is stripped when the line is completely exposed (while being cleaned and dried) are some of the most scary to me. He struggles the hardest at this time and I find myself thinking that it would take so very little for him to pull it out – risking infection and embolism.
Laying the bio-patch
After the line site is cleaned and dried and the nurse changes her gloves (this is how seriously sterile the care is – the same gloves that strip and clean the old can’t lay the new), the re-dressing begins with this bio-patch: a medicated, padded piece that releases antibiotics to keep the line clear and safe. Chase calls this his “donut” for obvious reasons. In this picture, he was beautifully silent and calm for a breath. More often than not, he screams “Band-aid! Band-aid!” as he knows that the last step of the change is the bandage and he desperately wants to be done.
All done!
And then the bandage and tape are on and it’s done! It’s hard to explain the flood of relief as we sit him up, sobbing and laughing at the same time. Another week without mishap…thank you, Lord. The entire process takes less than 15 minutes or a couple decades…depending on which body part you’re restraining.
The “Taco”
In our house, because it’s Chase, we reinforce the dressing with an ace wrap. The wrap, his “taco” (because of how it wraps around him like a burrito), is never off except for dressing changes. We learned this the hard way after losing a line in the Fall.
Five minutes later…
And then it’s five minutes later and the fight is a distant memory. He loves everybody again and he’s busy watching a Disney show on his iPad while Phyllis, his home healthcare nurse draws his labs. And by the time she leaves, he says“Bye, Miss Phyllis! Thanks for changing my donut!”
In closing, holding him down and watching him fight against this simple facet of care each week is extremely intense to me, but I am always so encouraged that this, this is the level of fight he brings to the cancer battle. Almost makes you feel sorry for any tumor willing to take him on, doesn’t it? 🙂
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]
As I stood in line at the pharmacy counter, I contemplated the astronomical bill I was about to pay for the poison I had to give. Ugh… Chemo…
As the very young pharmacy tech scanned the medicines into the register, I asked him if I could get a few syringes…preferably five as I have to discard them after giving each chemo dose. He took a small bag and, to my surprise, began to fill it with handfuls of syringes. After a moment, he handed me the small bag, stuffed to the brim. I stared at him for a moment and then protested; “Oh my goodness, you don’t have to…” and this boy stopped me and quietly said “Just take them. Please. You can’t have a very easy life. This is the least we can do.”
I had to keep from crying as I exited the store …and then I had to laugh a little bit that a bag full of plastic medicine dispensers could make me cry. But it was far more than the bits of disposable plastic – it was a most gracious understanding of an incomprehensible situation. It was…compassion.
Last night, as I was putting on Chase’s IV bag, I mentioned his upcoming visit to the hospital and reminded him that he was going to have a “nap with the doctor” – our little phrase for when he’s under general anesthesia, in this case for another spinal tap. Every time I’ve mentioned a “nap” in the last couple of weeks he’s whimpered and said he’s scared, but last night, as I put on his bag, he was able to articulate more. As I asked him why he was scared, he told me that it was because the “nap” “hurt his body” and as I questioned what that meant (assuming some soreness from the tap), he clearly and lucidly said “It’s the two men, Mom. They hurt my body when they go like this [mimics pinching his cheeks together and covering his mouth and nose]. They scare me!Please don’t let them do that, okay?”
As I heard my child describe a very vivid memory of what is most likely the three breaths of struggling consciousness against an anesthesia team from a previous procedure, my heart and stomach dropped as my ire rose.
How dare they let that happen? How on earth does he remember? Why?
I almost never find myself questioning the cancer as a whole – it is not in my nature to question the large and inevitable things, but these small moments sear into my conscious and unconscious thought and replay ad nauseum. In those moments, I am angry and even despairing. My desire to protect my children rages against the reality of not being able to shield them and being powerless to erase his mental image of men holding a mask over his face while nobody was there to save him.
Like a litany in my head, “I hate cancer, I hate cancer, I hate this!” I want to fight something, someone – to lash out and change what is.
As we sit and pray together, I remind him (as I desperately remind myself) of our verse: “Be strong and of good courage, for the Lord our God is with you.”(Joshua 1:9)
I know that I need to trust God and that the only way to remove the heaviness of this moment is to run to the Word for comfort, but how I hate the cancer and all that goes with it. “The law of the Lord is perfect; reviving the soul…”(Psalm 19:7)
In that moment, I hate it with every fiber, but by God’s grace, I will press on to a restful and peaceful soul because this wretched disease is not the end, but the start.
“…for the Lord our God is with you.”
Moment by moment.
[I feel like I’ve written words and verses like this a hundred times, but today I had to write this out for the benefit of my own heart. I needed to write out and be reminded of why I do what I do and for Whom. So if you’ve heard these words and phrases from me before, bear with me today…I needed to hear them in my own head and heart again.]
**Chase can often be given a kind of forgetting drug so that he’s “gone” before he ever physically seperates from us, but on occasion, that drug is deemed unwise (for a variety of reasons). His oncology team is amazing and as soon as I informed them of what he remembered, changes were put in place to ensure he is more comfortable in future. My writing is about my reaction to his experience – not a current issue with Chase’s care.**
