A Flock of Questions

 

I’ve talked before about our pickle jar of conversation question starters that we use at dinner time.  That discussion is usually my favorite part of the day.  It’s a super easy way to stay connected as a family, and it’s been both silly and insightful.

Take for example, a question from a couple weeks ago.

Describe yourself in three words:
Cee:  bossy, oldest, bookworm
Elle:  eager, gentle, sneaky
Moe:  farty, not-gentle, naughty  (I noted that we need to help Moe re-shape his self-image…)

We all enjoyed trying to pick the best words for ourselves.

But lots of times the questions circle back to the elephant in the room.

What is your favorite childhood memory?
Cee:  traveling this past summer
Elle:  when Cee could run and play

Like forgetting to grab an oven mitt before touching a pan, Elle’s words stung.  We’re working on our fourth month of Cee’s latest flare of the disease that impacts every aspect of our family life.

 

Earlier this week, Cee went to the hospital for her monthly infusion.

Before her infusion, she always gets a steroid, Benadryl, and Tylenol.  Apparently that decreases the likelihood that she’ll have an allergic reaction to her infusion medication.  It’s standard.

Death.  One of the side effects listed in the brochure about her infusion medication is “death.”

Deaths fall into two categories:  allergic reaction or secondary infection.  Fussing with the immune system is funny business; it can make even little germs have a big effect.

She came home from her infusion in good spirits.  They only needed one poke this week to start her IV.  They sent her home with a mermaid stickery thing that she loves.

Cee has spent half her life fighting.  Half her life.

What should we do?  What can we do?  What are we doing wrong?

On Friday she had an MRI.  We can’t remember if it’s her fourth or fifth MRI.  At any rate, she’s an old hand.  As I walked her back into the radiology department, I was intentional about talking to her calmly about what was going to happen.  Until I realized that she wasn’t listening and didn’t care.  That’s right.  She wasn’t anxious at all.

I sheepishly slunk back to the waiting room, completely irrelevant.  I wanted to hold Cee’s hand and tell her everything was going to be okay.  Because I needed the reassurance.  But she didn’t.  Cee is a brick.

And today?  We have some limited results from the MRI.  The nurse from Mayo sent the following message,

The MRI images show advanced degeneration of Catherine’s prior hip damage. The changes are significant, more so on the left than the right. Dr. M would like to keep Cee’s current JIA meds the same. Dr. M is placing a consult for Cee to see our pediatric orthopedic physicians. We have also placed an order for Cee to receive bilateral hip injections…

advanced degeneration
pediatric orthopedic physicians
advanced degeneration
bilateral hip injections
advanced degeneration

What should we do?  What can we do?  What are we doing wrong?

Should we seek a second opinion?  Cincinnati has a highly regarded pediatric rheumatology department.  Do we pack up and go to Cincinnati?  Could Cee even handle the almost 13 hour drive there?  Or is this just the natural progression of Cee’s disease?  Is there any other way to move forward?

Ultimately, we’re left with a flock of questions.

A flock of questions.  That seems to be the theme of the last four years.  A flock of questions.