I am back home, but I am still waiting.
Waiting on doctors. Waiting on home healthcare services. Waiting on insurance companies.
They 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.
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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.
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.
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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.
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.
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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.