daily update 10/12/2010

I joined Chad this morning shortly after 9:30 when my school drop-off duty ended.
I arrived to find him awake, watching Sports Center.
I put down my things, walked over to his bed and gave him a kiss hello.
His eyes fluttered, indicated he was tired.
I held his hand and asked if he was having a good day.
And he shook his head no.
I’m not exactly sure what that means, because he couldn’t offer any details.
I asked a few questions, all met with an empty stare.

The staff had their team meeting this morning and his nurse recently shared the newest plan for Chad.
It’s always a delicate balance to keep Chad comfortable, but not heavily sedated.
They recently reintroduced the Fentanyl patch for pain, to give him a baseline. They would continue to give morphine on a 4 hour schedule, with breakthrough doses available every hour.
Late last week, they added a second Fentanyl patch – so right now, he has two.
And today, they will be adding a third Fentanyl patch to hopefully decrease the amount of breakthrough pain (and morphine) is experiencing.

I asked about his extreme lethargy today – and if it could be a side effect of the changes in medication.
And it could be.
It could also be the tumors announcing their presence.
It’s hard to tell.

Yesterday, his eyes were different.
The left one was bulging, the right one was a red, irritated and seemed a little sunken.
We assume these changes are from the pressure building in his skull.
Hard to tell.
But, today his eyes are more normal.

Every day is something different.
A new symptom emerges and then disappears just as quickly.
He definitely is teaching everyone a lot about this disease process in the body of a healthy young adult.
To a point, he can still compensate for some of the symptoms because his heart and lungs are strong and healthy.

He has been having chills again today, which seem to pass after a few minutes.

It’s hard to say what’s going on.
And I’ve just decided to let what happens next to just happen.
Not to question it.
Not to doubt what I see.
But not to stand fixed in a situation that I have no control over, either.
To sway with the changes, stay still with the sameness.

I know what the time lines say.
And I also know that he proves me wrong each time I think we’re approaching the end.
He proves everyone wrong.

I’m being taught a lesson.
I thought I was a patient person before.
But this…this is a different kind of patience.

Patience to:





Hold Faith.





That’s all I’m asked to do.
And I’m trying.

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4 Responses to daily update 10/12/2010

  1. Asherpinskas says:

    And you are doing all that you can do…. very well !!

  2. TraciDove says:

    The LORD is my strength and my shield; my heart trusted in him, and I am helped: therefore my heart greatly rejoiceth; and with my song will I praise him.

    Psalm 28:7

  3. Ruth Dees says:

    If I ever am in a crisis I want you on my side. You are phenomenal!! My prayers and thoughts are with you dear lady!!

  4. Alison says:

    I started reading your blog about Chad early last week. My friend is very sick with an Anaplastic Astrocytoma Grade 3 that has now enlarged to the size of an orange in her frontal lobe. She also has lung mets from breast cancer after previously being told at 29 (she's 34 now) that she was in remission.
    Anyway, she's not doing well and her only family besides her little son (her husband and Mom) are shutting everyone out right now. They're extremely vague, resist visitors, and hardly update her caring bridge site.
    It is SO therapeutic for ME to see someone like YOU as an active participant in your husband's care. While they sit in solitude and wait for God, you're opening yourself up to us and in turn helping so many others. I know we can't tell people how to cope with a terminally ill loved one but I just commend you and stand in awe at your strength and stand in admiration at thud amazing written account of what you're going through. This will be extremely helpful for your daughters soon. God bless you and your family.

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