Thursday, May 12, 2011

Better The Devil You Know

I am back home, but I am still waiting.

Waiting on doctors. Waiting on home healthcare services. Waiting on insurance companies.

IV intravenous dripThey are trying to get on the same page so the treatment of Thing 1’s flare can begin:

  • 3 straight days of IV steroid doses; then a week later, two days of steroid drips; then one a week for two weeks. These can cause moodiness, high blood pressure, excessive hair growth, weight gain, cataracts and increased risk of infection.
  • A monthly dose of IVIG (Intravenous Immune Globulin), a refined human blood product that takes three to six hours to infuse. This can cause headaches, rash, fatigue, hypertension and, in worst cases, renal issues and aseptic meningitis.
  • 10 mg of oral prednisone a day. See the first bullet point.
  • 20 mg of Prosilec twice a day to prevent the prednisone from eating her stomach lining and GI tract.

It’s the same general treatment doctors put on when she was first diagnosed nine years ago. It’s the safe course, the one we know worked before with minimal problem and, in theory, should work again and nip this off in a few months.

This standard bill of fare wasn’t the first idea her doctor presented.

She mentioned trying Rituxan, another immune suppressant often used in non-Hodgkin's lymphoma, Crohn’s disease and rheumatoid arthritis. It’s considered a “third-line drug” for juvenile myositis patients, one you try when the primary treatments (steroids, methotrexate) and the complimentary treatments (IVIG, CellCept, plaquenil) fail or no longer do the trick. It’s success rate, at least in the JM kids we know, has been hit and miss; it’s side effects can be nasty.

The treatment would be two IV doses, see what happens, then evaluate what to do next.

“The reality is we need better treatments,” the doctor told me.

Until those are found, we decided to make her better with the devil we know.

All this is actually good news.

Thing 1’s blood work looked better than expected; her evaluation with the physical and occupational therapists showed only some minor loss of strength in her neck and truck muscles (she could barely do a sit up – a reality that almost made her cry, had problems holding her neck up for barely 60 seconds, could muster only half-hearted complaints about the exam taking so long).

Given the photos and descriptions we had emailed her the previous week, Thing 1’s doctor said she “much better than I expected.” But the prominent rash and other skin issues, including some tiny pebbles of calcinosis on her fingers and knuckles, are the clear warning flags that something bigger is crouched beneath the surface, ready to attack.

calcinosis JM finger
Time for us to stop waiting. Time to fight. Again.

* * *

It wasn’t all drama in Chicago; there was also sports.

Months ago, as a birthday present to myself, I bought us tickets for Sunday’s Cubs game in the wonder that is Wrigley Field. I was last in The Friendly Confines about 15 years ago and, I’m happy to report, that little has changed. The Cubs still lost.


thumbs up wrigley field chicago 
The pink hats were a giveaway for Mother’s Day. Suits me, no?

nachos wrigley field chicago

Thing 1 declared the nachos not nearly as good as those we had the previous Mother’s Day on the South Side at New Cominsky Park or whatever they call that concrete thing the White Sox play in.

* * *

We arrived back home Monday night, exhausted but optimistic. I went to bed feeling relieved despite it all.

When I woke the next morning, I looked in the mirror and saw one last birthday present.

look-closely overnight-gray-hair

That was SOOOOO not there when I left for Chicago Sunday morning!

What’s really scary -- I talked about being disappointed on my 40th birthday when I awoke to find my hair hadn’t suddenly turned white. Classic Uncool definition of “too little, too late.”

Well, as my dad says, I don’t care what color they turn as long as they stay put. Hair-dee-hair-hair, dad.

* * *

Help heal Thing 1 and all kids with juvenile myositis diseases! Support our family as we participate in the Seattle Rock ‘n’ Roll Marathon by donating to Cure JM.


  1. Looks like it's still winter in Chicago!

  2. We support you-

    Play BALL!

    Warm Aloha from Honolulu

    Comfort Spiral




  3. I have been following your blog lately and have read your stories and the stories about your child, I am glad that she is getting better like on the picture on this post. There is a hope and thank you for such an inspiring stories. I gives you 2 thumbs up for sharing such incredible stories to the world

  4. Sigh....

    Thing 1's a tough cookie. She will get through this and have plenty of energy to give you many more gray hairs in the future.

  5. For some reason, I thought you were in your 30's. I now feel better, knowing I could be your big sis and NOT your babysitter....

    One of the hardest things about being a parent is making medical decisions for your children. The other is watching your child being put through all the testing, etc. I will pray that this course of treatment works for her.

  6. Ignore the grey hair, put it out and have another bowl of nachos.

  7. I hope this round of treatments works like a charm! Man. I can't imagine. However, I know she's in some great care - medically and parentally (I think I just made that up), so that's great news right there.
    As for the grays - hair today, gone tomorrow? Ha! :)

  8. What the wha with blogger?

    Amyway, like Mom of 2
    9I think) said, first of many thing 1 related grey hairs. Wait til she starts dating and brings home a Yankee fan.

  9. Homemaker Man -

    Are you trying to kill the poor man?


  10. My gray hairs hit when I turned 31.

    You'll get no sympathy from me.

    I know someone wheo did that drug for Chrones... wise to go with the evil you know. Keep us posted.

  11. I'm glad to read that you're optimistic. It's probably good to go with the devil you know, but I hope they come up with better treatments soon.

    I'm also glad you got to visit Wrigley Field. (Sorry the Cubs lost, but isn't that par for the course.) I live in Chicago and haven't been there in about 20 years, driven outside but not been in the park. Sorry the nachos weren't as good. Maybe the Sox can share the recipe. :)

    As for the gray hair, well, I had my first at 15. The best thing is that now I get to determine the color of my hair. My husband wishes his hair would turn gray instead of disappearing.

    Good luck with everything.

  12. I haven't much to say besides "I'm hoping for you..."

    Shade and Sweetwater,

  13. Thoughts are with you and the waiting game sucks in any situation but you are handling it as best as anyone can, you're a parent - you worry, you love, and you wanna kick ass!

  14. Seems like a good call. Good luck with everything. Will look for you out here that last week of June. It is Lukas' Birthday weekend, so we may be a bit tied up but hopefully we can at least touch bases.

  15. Welcome to the gray club. Hoping all goes well there...

  16. Funny how you emphasize on your grey hairs. Don't worry you are not the only one, and thank heavens your daughter is looking great and in shape now.


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