Quick Update

We went for Parker's infusion yesterday and, of course, with the week we had, the doc came in to see him.  His Actemra infusion was increased.  He was also given additional pain meds in IV and his regular push of steroids and his benedryl, chemo, zofran (for nausea), and acetaminophen.  His pain is out of control....we are changing his daily pain meds in hopes to get better control.  He is starting 2 different patches with pain meds in them.  His joints are less swollen but still in pain and warm to the touch.  Lymphs have been swelling too.  The crackling in his joints is to be expected and the doc called it crepping (I have to look that one up). 

The doc also ordered another round of double antibiotics because his H-pylori is still active.  Hopefully this next round will do the trick.  Otherwise we will be going to the gastro doc next for a scope.  She is hoping this is just a "blip" and we will see the Actemra continue to work.  If it doesn't, then we are in for weekly visits with alternating infusions of Actemra and Remicade and we just can't even go there with our thoughts right now. He has been cold and losing his hair more.  The doc said that sometimes the body reacts this way.

One of the problems with systemic JA is kids' immune systems have little to fight with...please continue to keep Parker and our family in your prayers and throughts.  Today, he woke asking to soak in the bath.  He said he does feel better since his infusion and he seems a bit more energized to me. 

Almost 1 Year!

I know this is a long entry, but I have totally been avoiding blogging.  I am having such a hard time emotionally…for about a week now.  Parker has been very sick.  He has h-pylori and is now on 3 additional medications to treat it.  Parker is allergic to five antibiotics to so we are on pins and needles hoping he doesn’t react.  We just need to get him through this next week.  His past reactions have mostly occurred around day 7-10 of taking the med.  So far, so good…no reaction.  Tomorrow is day seven.

Once again, he is missing school.  The h-pylori is a stomach bacteria and it has put him in tons of stomach pain, horrible bowels (won’t go into the details), decreased appetite, and it is totally flaring his JA.  His pain is intense and he is very very fatigued.  Last Friday he seemed to be turning the corner and so we had one of his little friends over who has JA on Saturday.  She is 6 and she is into frogs and so we gave her Parker’s old frog tank.  The two of them had a pretty fun day and went swimming, cause we thought it would be “good for him”…not so much.  He got so much worse that night and next day.

So let me just share a little tid bit about pain…it is not something to take lightly.  He is trying so hard to not let the pain get the best of him but it’s turning him into Mr. Grouch.  I know he doesn’t mean to be mean.  Not only does the pain make him edgy but he is also on massive steroids and they are contributing to this horrible mood…we are trying to be patient but at the same time using it as an opportunity to teach him how to calm and breathe through it.  The pain is so bad; he is waking up totally drenched, with a temp in the 95’s.  I do think that it is worsened by the infection he is fighting; so I keep saying “this too shall pass”…

But my emotions are a mess…I just realized that we are approaching ONE YEAR since his diagnosis…We have learned a lot, have met some wonderful people, and we have actually seen some progress since he started the actemra.  So for these things I am very thankful; yet I find that I am fighting back tears…

When Parker was diagnosed we were told over and over, “at least it’s not cancer”…And people still say this, so I need to talk about this a moment.  Many of the families I have spoken with have had “cancer scares” and have gone through multiple tests to “rule it out”…including us with Parker.  And yes, I am very thankful it’s not cancer…but it is said to parents as if having JA is better than having cancer (I know they don’t realize what they are saying).  But JA should not be considered acceptable or better.  It deserves recognition.  It is a vicious, horrible, painful, and life altering disease.  And it can even be life threatening, as in Parker’s case.  And the medications that are given to children with JA warn that they can increase the chances of cancer and yet we choose them…because there are no other choices.  Parents hope for “good days” and remission.  We use these meds because our hope is to stop the progression and give our children a quality of life.  We need a cure!

We deal with very real issues.  I watched my son run a few weeks ago because he won a raffle at the arthritis walk and he ran up to get it.  It’s the first time I have seen him run in a long time.  I was excited and then I looked over at my husband and we both realized his balance was totally off and he was waddle running.  This was a moment of excitement and fear all in the same moment, for both of us.    Then there are the days he sleeps and sleeps, like this last week.  When this happens, I find myself checking to see if he is still breathing.  But the worst is in moments like tonight…he asked me if he was dying….

One of the receptionists at the hospital, who checks in all the children as they come in for their infusions, got into a conversation with me recently.  She has seen us come in to see both the rheumatologist and the oncologist because the docs share clinical space and the infusion room.  She shared that she sees so many children but she watches the children with RA experience so much pain and that is really hard for her to watch because they come for treatment until they are adults and age out of the pediatric care.  And she sees them at their worst.  And yet these children try to smile…

Don’t get me wrong, there are moments that children with JA have fun and run and do what other kids do…that’s what the public sees and it confuses them.  But when kids with JA are in a flare, they are NOT seen.  They are home, at doctors, in labs, in therapy clinics, getting tests in radiology, in infusion rooms, in the hospital….  Thus they are not heard…They need a voice.  Be their VOICE. 

It is Arthritis Awareness Month.  I cannot believe that the anniversary of my son’s diagnosis is in the same month as JA awareness month.  I need your help.  My family needs your help.  My son, Parker, needs your help.  Tell others about Juvenile Arthritis.  Send them to this blog…help others learn that YES kids do get arthritis and it’s very different than grandma’s arthritis…it’s very real and involves real children with real families with real hopes and dreams for the future and a cure.