Little Things

So...(insert deep breath here)...our NYC doctor finally returned from vacation and we met with him to discuss "the plan". Apparently, our expectations were too low. We were simply hoping for his willingness to work with the Chicago Dr and "get aggressive" if need be, but we did even better than that! He said, "Sophie's blood work looks great and her numbers are improving across the board. 'Chicago' AND I are BOTH comfortable continuing with the current treatment (with a couple minor tweaks)." Phew! Now that IS good news! We feel like we dodged a bullet there. Hopefully, her numbers will continue to improve and the Drs' treatment  differences will continue to be a moot point.  

As for Sophie, she is starting to ask a lot more questions about why she has to give blood, get shots and take so much medicine. I know a frank conversation with her about her disease is imminent. I just feel I have to be ready to put on a brave, can-do face before we have that talk. After all, what help can I be to her if I, her "fearless leader", am gasping for breath from a paper bag?! So....(insert additional deep breath here)... this is my journey. I am working on coming to peace with our "new reality" so that, in turn, she can.  I have to say, today it's looking pretty good.  Sophie is happy at school doing everything a four-year-old should be doing--painting, block-building and snacking on a steady diet of goldfish and graham crackers. She is happy at home with her family playing Candy Land marathons and singing aloud to her favorite songs.  And, she is particularly happy with her new shiny patent leather shoes. Sophie is doing fine.  In fact, it is becoming quite clear that we would all be better off around here if we followed HER lead. Like all children, she knows something that we adults all-too-often forget. It is the little things.

Bravery

Nooooow I get it. I am a little slow. I could not understand why I was being commended for bravery in writing about Sophie's illness, but now I understand. When you are a blogger, its not always about the I-know-exactly-how-I-am-going-to-pummel-this-disease-to-the-ground, grind-my-heel-in-its face and stick-my-flag-in-it-times. It's also about sharing the frustrated, exhausted, doubtful and scared-out-of-your-mind times. After all, this is the point of the blog. This is what makes it real. If I hold true to my intentions of sharing (See my entry Sophie Myn, points 2,3,4 and 5), then I have to share it all. What is the good of things, kitchen sinks and fingernails aside, that are perfectly edited, manicured and sanitized? Life is messy. And at times, as we have discovered this month, very very scary. 

The last few days have been the hardest we have had since Sophie has gotten sick. Ironically,  it has nothing directly to do with Sophie. Rather, it has to do with the fact that it seems our doctors in New York do not agree with the treatment advice we have gotten from Chicago. (Our regular rheumatologist is away on vacation until next week so we will see what he says when he returns, but his partner has made it clear that he absolutely does not agree with the aggressive treatment advice we received and will not move forward.) Apparently this is a very common problem in Juvenile Dermatomyositis (JDM), as there is no standard protocol for treatment. As far as I can tell, this is due to a couple of reasons: 

1) There is not a lot of research on JDM, as there is a small population to study  (3 out of a million children get JDM). Therefore, it does not attract a lot of attention or funding.

2) There is tremendous variability in JDM from patient to patient.

As a result,  JDM is not very well understood. That's right, folks. I have had a hard time getting my head around that myself. So let me repeat it. THE SAME DISEASE THAT FIVE WEEKS AGO HAD MY DAUGHTER TOO WEAK TO HOLD HER OWN HEAD UP IS NOT WELL UNDERSTOOD. There is little agreement between doctors, their assessment tools vary (Chicago used different tests than New York to assess disease activity in my daughter) and treatment protocols vary. So where has this left us? Aside from a state of deep despair? It has left us in a position of having to make complicated medical decisions that the world's best doctors can not even agree upon. Do we work with the expert in Chicago who has dedicated her life to researching and treating JDM patients or our talented pediatric rheumatologist who belongs to the practice in my neighborhood that has cared for my children since birth? My hope is that these doctors can somehow find a way to work together that will make all of us feel comfortable. And if they can not do that? Then I guess RON AND I will just have to do whatever it is WE think is best for our little girl. Talk about bravery.