Of Donuts and Tacos…

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
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
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.

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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!
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"
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
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? 🙂

Moment by moment.

 

Shadows And Love

During the Christmas season, I attended the most wonderful wedding – it was just what such a celebration at the holidays should be, yet as I sat in the dimly lit auditorium, I felt out of place. Weddings are joyous occasions and even as I truly entered into the happiness of the bride and groom I couldn’t completely escape the shadow of Chase’s cancer. …and so I sat, taking in the beauty and feeling vaguely guilty lest my shadow burden be apparent to anybody but myself.

Words broke through my distracted thoughts as a woman in a beautiful gray dress stood to do a reading. As she spoke, my shadow seemed to grow stronger. I couldn’t hear the words she spoke with anything other than cancer ears…even though I knew that they had been chosen to reflect this marriage love at the moment of commitment, but as she spoke the familiar words, my heart was soothed by the fresh reminder of the Gracious Provider…and then she began to cry…and I cried too because I had needed to hear those words.

Much later in the evening, Providence ordained that I meet the woman who read the verses: a divine appointment if ever there was one. I learned that she too carries a horrific cancer shadow. I, my baby boy…she, the spouse ’til death do they part. We talked and cried and felt helpless together in the middle of the beautiful reception and though I had never met her before and may not see her again for some time, she is my sister because of that night.

Many times since then, I’ve pondered the strange mixing of the celebration and the sadness, and the family relationship with a complete stranger because of the pain. In my mind, pain and joy belong in different universes, yet from birth to death we cannot separate them any more than we can separate ourselves from the Sovereign One who created us.

Here is an excerpt of the words she read that night…

For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. Romans 8:38-39

Of this I am sure, there is a mercy in the shadows of pain – a severe, but present one nonetheless. I do not even pretend to know what it is, but I know it is there because I, and she, and all who walk a painful road walk it next to the Everlasting Love who has known us always and will know us still and what is a dim shadow now will be crystal clear when we see Him face to face. Even so, come soon, Lord Jesus, come soon.

Moment by moment.

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Five Years

Five years later…

My Dearest Husband,
As we pledged our lives to one another, we never could have known what was ahead. I know that these first five years are only a small dip into the well of blessing that the Lord has for us. As I write, I am reminded of the words we sang that day:

“Thine own great presence to cheer and to guide; strength for today, and bright hope for tomorrow, blessings all mine, with ten thousand beside.”

In joyful anticipation of growing closer every year…

Love,
Your Wife

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