Sunday, January 23, 2011

Latest News…New Med...New Hope

Well, I have been avoiding putting into words this last week’s events.  The purpose of our blog is to raise awareness around juvenile arthritis and we very much want to do that, but it is also hard to put into words what we have been experiencing.  The emotions have been from one extreme to another, but continually felt with love.  Our fear that Parker might have lymphoma was very real and yet, through it all, we were always hopeful.  Parker was aware of what he was facing and asked many difficult questions and when the pain grabbed hold of his little body he stopped himself from saying from what he sometimes says, “I just want to die and go to heaven, so I don’t have anymore pain” and he began to say, “I don’t want to die” or “why is all this happening to me”…But he knew he might have to fight and he would also say, “I know we can do this, cause I have you and dad and Logan.”  We were ready to battle and move forward with whatever we were told. And when the oncologist called to say Parker did not have lymphoma, it was as if the doctor gave me back my breath.  I hadn’t even realized how tightly I was holding myself together.  I could breathe again.  And I thought, “Oh thank goodness he only has Juvenile Arthritis”…and then I thought, “Oh my gosh, he still has arthritis… and now our battle resumes”.  Don’t get me wrong, I know they are not the same and having only one chronic illness is so much better than having two; and of course lymphoma is much more serious…but what so many people don’t realize is that JA is an ongoing painful battle that can also be life threatening. 

As parents, we have extremely difficult decisions to make with very little JA research to back our decisions.   We don’t know what long term effects our decisions will have but what we do know is that we have to do something.  See, we had to halt treatment of his JA until we knew he didn’t have lymphoma because the infusion that his pediatric rheumatologist needed to start him on increases chances of lymphoma.  So we make our treatment choices with a huge leap of faith and we tightly embrace our hope that this next round of treatment will slow down Parker’s JA.  Recently, one of his toes has started to turn in and his hands seem to always be inflamed and in pain along with his ankles, knees, neck, ribcage joints (did you know there were joints in the ribs) and several toes.  And the dentist has been keeping an eye on his jaw because he has had swelling and trouble with it too.  Then there is the constant close eye on his eyes…And we think that his intestinal tract is also affected by the JA.  And of course we still treat his allergies and asthma condition, which has been going pretty good. 

So, last Thursday Parker and I spent the day at the hospital for his newest treatment.  We have discontinued his once-a-week enbrel shot and now he gets infusions of remicade.  The nurse had some trouble getting his IV started (evidence of this resulted in a big fat bruise).  They started with “pre-meds”.  He took his special compounded acetaminophen (all over the counter brands contain corn and he is allergic to corn…in fact, 4 of his meds have to be compounded special for him); then he was given solumedrol (steroid) and Benadryl in his IV.  These are preventative in case he reacts to the remicade and then he received the remicade followed by additional pain meds (due to his flare that day) and they included his regular methotrexate (a chemo drug but at a lower dose than for children with cancer).  By giving him his methotrexate in his IV, we were able to have one week without Friday night shots (a very nice break).  So four hours later, we were on our way home.  The treatment left him very nauseous and for about 24 hrs. he had an extreme head ache, but then they subsided and he seems to be doing somewhat better.  We go back in 2 weeks for his second round and then hopefully not back for 4 weeks.  Once he gets to 4 weeks, he will then get the infusion monthly.  Parker was instructed that he could now get sick easier because his immune system is even weaker than it was with the meds that he is on.  So Miss Clean Gene me will probably be even more of a “germ-a-phobe”…

Many families are experiencing a lot of difficulties this year around their children’s JA.  Please keep them all in your thoughts and prayers.  Many of our JA friends have had changes in treatments, financial burdens, and multiple medical tests that are quite traumatic for young children.  So, we continue to be thankful and hopeful that some day there will be a cure.  We choose to live life fully and we love each other and laugh together. 

This week there was a new publication that might shed some light on how JA is triggered.  Read below:

Science Daily (Jan. 17, 2011) — “Scientists have identified a protein that acts as a "master switch" in certain white blood cells, determining whether they promote or inhibit inflammation. The study, published in the journal Nature Immunology, could help researchers look for new treatments for diseases such as rheumatoid arthritis that involve excessive inflammation.”


  1. What a month it has been for you all! I hope that you got your "lazy weekend", and you may feel recharged to start the new week ahead. You all certainly deserve a break! Love you guys!

  2. What an emotional month all of you have had to endure. Waiting is so hard- but am thrilled of the results for Parker. Am really hopeful for Parker- hoping Remicade will be an affective treatment for him!
    Thanks for taking the time to share Parker's JRA journey. It has been a rough 2011 so far- hope these kids will start to feel better and calem down a bit!