CT Scan Results

The CT Scan results are in... they look normal.

You might think we'd be celebrating this piece of news. We got the images, no anethesia required, normal results, what's not to celebrate right?

The issue is all a negative CT scan does is rule some other things out. They don't explain the "highly abnormal PET scan results" on the legs. The current top three thoughts on the cause are:

1) Inflammation from prednisone withdrawal
This is the classic case of prednisone is your friend (it was what they gave him to reduce inflammation and get his poop moving) and then it's your worst enemy as you try to stop taking it.

2) New disease growth in the bone marrow
Obviously, this would not be good. It would definitely lead to more aggressive chemo treatment.

3) Avascular Necrosis
What is that? Well, here's the definition I've pieced together:

Avascular necrosis typically causes pain and reduced range of motion in the affected joint. The most common joints affected include:
• Hip. In addition to pain in the hip joint itself, pain also may radiate into your groin or go down your thigh to your knee.
• Knee. The pain occurs most often on the inside of the knee and worsens with activity

Some people experience avascular necrosis bilaterally — for example, in both hips or in both knees. (Note --- yikes! that is us!)

Avascular necrosis that goes untreated will continue causing deterioration of the bone. Eventually the bone may become weakened enough that it collapses, causing pain and disability.

Common causes include:
- Corticosteroids. People who take high doses of corticosteroids, such as prednisone, for long periods of time
- Several types of medical procedures can weaken bones, making it easier for you to develop avascular necrosis. Examples include treatments such as chemotherapy.

The deep pit in the stomach returns. The avascular necrosis definition is creepy because way too much of it is ringing true. It will require an extensive MRI to rule this out. It will likely take a month to get the MRI appointment scheduled.

How do you not worry in these types of situations? I'm not sure. I keep praying for God to take the burden, trying to completely give it to him, but it's hard. Especially when it's your child.

At least I don't feel guilt about whether doing chemo is the right choice. His disease rages out of control when not treated and would lead to death.

But avascular necrosis would be a horrific long term side effect. Our best hope is it's just prednisone withdrawal and short term.

I'm committing as much as possible to not spend time in the "rocking chair" (for those of you who recently joined the blog this analogy is worrying is like spending all day in the rocking chair... it totally wears you out and gets you no where).

Proverbs 3:5-6 Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge him and He will make your paths straight."

Kristin