Of Shots, Truth, and Worry

, ,



The other night, David gave Cee her Methotrexate shot right before bed.  Methotrexate is a chemotherapy drug that is used for SJIA because it shuts down the immune system.  Cee’s immune system is superhuman; it’s so powerful that it even attacks things that aren’t germs.  Like her joints.


Cee’s Methotrexate often makes her nauseous.  Sometimes the peppermint essential oil works, sometimes it doesn’t.  She loses her cookies with her shot about half the time.  Which is better than it was before we started using the peppermint.  Then it was all the time.  100%.


Methotrexate Day is the worst day of the week.  We dread it, the three of us.  Cee hates her shot and the way it makes her feel.  David has administered it for almost three years now; he took over when I was pregnant with Bea, and I am grateful that he bears that burden.  I see in his eyes how much it pains him to inject that yellow poison into his little girl.  “Don’t think about it like that!  It’s making her better!”  Yes.  We’ve been told that by well-meaning people.  But it doesn’t actually make it easier to bear.


Sometimes the shot makes it difficult for Cee to sleep, which is somewhat of a bummer, but not for the reason you’d think.  She’s all ready to stay up after the other kids go to sleep and chat.  But on Methotrexate Day, David and I both get lost in our thoughts.  In our fears.  We wish there was something else we could be doing that would have the same effect as this medication.  But there isn’t.  And we want time and space to process all those feelings before having to start another day with a smile.  And then there’s Cee– grayish from her body metabolizing the medication, greenish from the nausea, happy to snuggle up on the couch and talk about everything.  Methotrexate makes her chatty.

I wish that I could hang on to every word she says on Methotrexate Nights.  That I could respond thoughtfully to every question she asks during that precious time.  But it’s all I can do to muster up the energy to keep from sobbing.  I hope that just being there is enough.

After the shot this week, David retreated to his office to do some evening paper work.  Cee joined me on the couch, and eventually the two of us fell asleep together after this most recent Methotrexate Day.

I disentangled myself and starting tidying shortly before David came up to go to bed.  And when he came up the stairs– we just cried together at the sight of our little girl sleeping on the couch.  All that she has been.  All that she is.  And all that she will be.

It hurts so much to know how much she suffers.

We’ve had a good month.  From when we returned home from Cincinnati at the end of April to the end of May she’s been active.  She’s ridden her bike (with training wheels).  We’ve completely forsaken her wheelchair.

But here at the beginning of June, she started slowing down again.  She’s getting more irritable.  That’s the canary in the mine for Cee.  She gets crabbier, and we suspect an impending flare.  Her limp is a bit more pronounced.  She insists that she’s not in any more pain; maybe that’s true, or maybe she’s protecting us.  It wouldn’t take much for her to see through our faux nonchalance.  “Oh, how are you feeling?  Does your hip hurt?”

We know.  We know because we’ve been here a thousand times.  Maybe it’s something.  Maybe it’s nothing.  And so we wait.


Part of me wants to scream.  At no one in particular.  “One good month out of the last eight?  And now that’s it?  No more biking?  Hello wheelchair?  She hasn’t even been able to use her roller skates!”

She hasn’t even been able to use her roller skates.  Her birthday roller skates.  The only thing on her wishlist last October.  They sit in the garage.  Collecting dust.


The SJIA mom we met in Cincinnati encouraged us as a rare case of a rare disease to delve into pub med documents.  She said she just searches for several  keywords and sifts through the results.  She said she can’t understand most of what she finds, but she has time to find the articles and her doctor doesn’t.  She brings journal articles to her appointments regularly.  “What about this?”  Most the time he’s already aware of the conclusions, but there have been a handful of times she’s helped him find new research.

And so David has poked around the online medical journals.  Tonight he came upstairs, upset with his findings.

“I’ve never seen it move this fast.”

We’ve heard multiple (how many?  5?  6?) doctors say this about Cee’s cartilage disappearance.  We went to The Guy in SJIA to hear him say those words to us.

David found information about some connection between soft tissue damage in SJIA.  If you have it in the cartilage, it’s more likely to attack other organs.  Like the heart.  The lungs.

“I’ve never seen it move this fast.”

The doctor in Cincinnati sort of swept the cartilage disappearance under the rug by saying it wasn’t related to her SJIA.  From our fairly extensive medical experience, we know that doctors like to be able to check boxes and draw conclusions.  I brushed off this diagnosis as one of those times when doctors say something so they feel like they said something.

But maybe there’s more.  David’s concern is that Cee isn’t the only one protecting us.  The doctors might be, too.  Because no one has leveled with us.  No one has said just how serious this is.  Everyone skirts around the “d” word.  The “t” word.

“I’ve never seen it move this fast.”

We have been told that there is virtually nothing that anyone can do.  It’s not that much of a stretch to get to “death.”  “Terminal.”

We are on a raft in the ocean, completely at the mercy of the weather and the waves, hanging on for dear life.

“She will not get better.”   The only time an answer was completely honest, and it didn’t come from any doctor.

But we forget.  Sometimes, in the middle of a story or a song we forget just how little time we might have.  That makes the remembering harder.  Seeing Cee asleep on the couch, knowing what we do, takes our breath away.  It actually becomes difficult to breathe, knowing that we are watching her die slowly and not being able to do anything about it.


We can do things.  We went on a Make-A-Wish trip.  We homeschool.  We minimize screen time.  All these things help us to treat each day as a gift.  But when she’s not feeling well, every hour requires an enormous effort to choose living instead of hiding under the covers in tears.


We have found a handicap accessible home.  We start showing our house on Saturday.  I’ve been packing up stuff like crazy so potential buyers see the house and not just our million books.  Please pray for us as we go through the process of showing and (hopefully!) selling a house.  We want this to work.  We want to fill a new house with happy memories before things change again.



As you can see, I’ve got enough real issues to try to cope with.  I don’t have brain space for other worries.  I’ve shared some thoughts about worrying over at Everyday Ediths, if you’d like to read more.


  1. // Reply

    Oh dear, you certainly don’t need anything else to worry about.

    ~St Juliana Falconieri, who knew the suffering of chronic illness, pray for Cee.
    ~Blessed Margaret, suffused with the peace which surpasses understanding, pray for Cee.
    ~Jesus Christ, Great Physician, please guide Cee’s doctors. Take her family into your healing heart. Draw them closer together in your love.

  2. // Reply

    As my father would say, this is a tough row to hoe.

    About wondering if what’s said is true or not, That makes a difficult situation even harder – – – as you well know.

    There are no words which will help, but I respectfully extend my sympathy: and prayer.

    I remember when ‘doctor know best’ was more commonly believed, and when lying to patients was more widely regarded as a good idea. Sadly, no matter what we learn, doctors are still human.

    I prefer to believe that some of the less-than-truthful statements come from the doctor’s feelings of weakness, inadequacy in the face of what you and your family deal with.

  3. // Reply

    Your honesty is stunning. I’ve got to believe that God honors that kind of transparency. Wish there didn’t need to be this reason for it though. Sending love and prayers.

  4. // Reply

    Oh dear, I just wish I could give you a hug. We don’t think when we get that positive pregnancy test that we are opening up our hearts to unimaginable painful possibilities . . . we tend just to think of the joy that will come. This is a deep meditation for me to ponder.

Leave a Reply

Your email address will not be published. Required fields are marked *