Sunday, April 10, 2011

Pounding JA with Actemra!

Where would we be without our JA friends?  They truly understand how difficult our days have been and have periodically checked in with us to see how things are going.  We were showered with their support this week, as we endured our wait for medical results.  We are so appreciative.  We had a hard week not only with Parker, but Logan was also really sick.   I too was undergoing many medical tests; and our dear dear friend has been very sick and is in intensive care.  So for those of you who called, sent messages, and the very special person who sent a very lovely card…we thank you all from the bottom of our hearts. 

We are happy to report that Parker does not have JDM, however, he does have vasculitis in conjunction with his systemic JA.  To learn more about this condition, here is a website that explains it:

We also found out why his jaw is giving him trouble.  There is little space nor cartilage between the joints on both sides of his jaw.  His rheumy wants to keep a close eye on that; and we are going to an ortho for a special splint night guard.  We also found out that many of Parker’s blood levels are still off and he is quite weak.  Thankfully, I found one pediatric physical therapist that takes our health insurance and so we are now on a wait list to resume PT, 2 to 3 times a week. 

As many of you know, we have had some difficulty around approvals with our health insurance.  This week our primary doctor (I just LOVE her!), recommended that we call our insurance and ask for a case manager because she believes he would qualify since he has a “severe disease that is difficult to manage”.  She even gave us the direct phone number.  Who knew we could do this!?  I will let you know how that goes…

As for me, we found out that I don’t have lupus (both my primary and my allergist had this concern).  We are very thankful for this news.  I do have another small goiter on my thyroid, but we just need to continue to monitor it.  I did find out that I have a severe vitamin D deficiency (already working on this) and….ready for this…significant arthritis in both shoulders and hips with the start of osteoporosis.  Parker says we are still two peas in a pod (he has always said this about our allergies and asthma)…but I know that my pain has been nowhere near the level of his.

As for Logan, he is doing much better.  Still coughing a bit, along with Parker, but we think both boys are finally on the up-side of this infection.  Thanks again to our aggressive primary doctor who quickly started treatment.  And as for Michael, he is taking care of all of us…and I love him dearly for that.

We have successfully completed Parker’s second round of his Actemra infusion.  We truly think it is starting to work.  We hear joy in Parker’s voice again and although he still is requiring tons of sleep, he has more alertness when he is awake.  His swelling also seems to be going down and he appears to be moving smoother.  He is still in pain, but we are so incredibly hopeful that the Actemra is doing its job.  We will continue to go back every 2 weeks for infusions.  We think we are beginning to see light at the end of that tunnel; and as our friend WilmaSue has joked, we hope it’s not just a kid down there waving a glow stick.  But if it is, maybe some day soon Parker can join that kid!


  1. Aw! That is all great news! I think of you often and pray for you and your family. This awful disease is a family affair.

  2. Although you shared great news with us-- I also understand this is still a battle! Hoping Actemra is the answer for Parker. Yes- I want to see him riding his skateboard and hanging at the beach! Maybe this summer-- ohhh I hope so!

    Your family is amazing and each so special! Thanks for sharing with us your great news and will continue to pray for each one of you!

  3. I am so, so thankful that the Actemra is working!!! And that Parker is sounding happier :) Maybe it has something to do with the spring, or maybe they have an even weirder link, but I hadn't heard Emily sing until this week on the way to Shands. It's been a great week for her, too. I am hopeful that both of our little people will start to feel much more like their old selves very soon. It's so horrible what these kids go through. I'm just so happy that Parker finally has some hope. I didn't realize that Logan was sick, too! Jeez, what a week you've had! Thank the Lord it was balanced with good news :) At least they discovered your issues before they became huge. Can't wait to get the kids together again! :)

  4. Thank goodness for the positive news about Parker...i am so glad to hear the new med seems to be working. i am not so happy to hear your news rochelle....thank goodness you dont have lupus but the arthritis and onset of osteo is not happy news...i am so sorry to hear you had such a rough week. your family has been through so are all amazing. we pray for all of you every day!
    Parker - thinking about you buddy - i hope you know how proud we are of you and how much i love you!
    Aunt Theresa

  5. I always hate to hear bad news about your family's health. Rochelle, you have been fighting the battle since college....and could write a book just on everything you have had to indure, including all the surgeries. I pray that with meds you can stop any osteo symptoms from getting worse. Aunt Janey takes meds for this and it is helping her.
    I am glad that Logan is feeling better. I pray that his headaches go away as well.
    Parker is so brave to continue the treatments at
    Shands. I pray that he continues to improve, and can start to enjoy being a kid again.
    I love you all so much, and I pray every day for each of you.