Today is Today…the Day Before Tomorrow

I think that today was one of the hardest days I have had to face so far.  I am not quite sure why.  Maybe it was because this week was so intense (endoscopy/colonoscopy, port insertion, ankle/wrist splint fitting, and infusion treatment).  Maybe it’s because of all we, as a family are juggling (work, two boys with busy lives, housework, tons of medical appointments, etc).  Maybe it was because of the constant unknown and never being fully prepared. Or maybe it was simply because it’s been raining non-stop and it seems to be affecting every kid with JA that we know.

We try to desperately believe that things will get better.  We constantly pray for healing, strength, and relief.  We continually marvel at the strength of our family.  We pause to celebrate the little things that bind us to each other and appreciate the support of those who care about us.  Our hope is vast…but today is today…and in this moment, we are struggling to make huge decisions all while we continue on.

Every time Parker exerts his joy in the moment, it seems there is a harsh price to pay.  All week has been hard on his body.  He tries to push himself but with caution.  But it seems to be a constant battle to find that balance his body demands.

He made 2 hours to school this week.  This was amazing considering this week.  Half of his tests came back from his endoscopy/colonoscopy.  He does have gastritis (swelling of the stomach lining).  One small reminder that all his organs can be affected by inflammation of his systemic (hate that word these days) JA.  If this was the only thing we were dealing with, it might not be as big of a deal…but he is not eating well.  The other half of the tests are still being processed…stay tuned, hopefully with good news.



Parker's Port on Day 4, healing nicely.



His port is in and functioning well.  However, his body would not behave normally for this either.  The surgeon could not find a good vessel in his chest, so he had to go in his neck, therefore his port is subclavical (higher than normal).  And the surgeon also noted that he bruised more than normal.  He has some issues with how his blood pools and is bruising pretty easily.  When he came out of his surgery, he reported that his pain was at a 6.  Now let me clarify a bit.  He was a 10 at his joints, 6 at his surgical site.  And even when all his local anesthetics and anesthesia wore off, it never got above an 8.  Initially this totally excited me because he hasn’t reported his pain level below a 10 for about a year now.  He says it’s a 10-, 10, or 10+ every day.  But then as this sank in, my husband and I realized that Parker is in pretty significant pain daily.  So, we are incredibly proud of his perseverance, resilience, enthusiasm, and persistence.

Parker had a good friend over last night.  They had such a good time.  They played video games and chatted and watched movies.  When he left though, Parker hit rock bottom.  He slept all afternoon.  Yet another reminder of the energy that is lacking, despite how hard he tries.

Thanks Mina for visiting Parker in the Infusion Room.
Parker had fun playing a joke on the doc and nurses.
He said he was tired of all the attempts to get his IVs started
(thus the headband with syringe), so he decided to get a port.

So, Friday was Parker’s infusion treatment and doc appointment.  We got news that his muscle enzymes have been off since his hospital stay in July.  We were asked how we felt about the treatment he has been on for 6 months now.  I feel like we have some big decisions to make again.  I am not ready to give up on Actemra yet, as it is the only thing that has even touched this horrible disease.  But as I was reminded about his pericardial effusion, elevated enzymes, pluersy, and now his stomach, I felt like someone was punching ME in the stomach.  This is all VERY REAL…and I keep trying to be optimistic and yet there seems to always be some new battle to buck up and fight.  Parker is now considering joint injections.  We will see…  Parker asked lots of questions this last visit and has been processing a lot this weekend.  We all have.

Beautiful tile mural on the 4th floor of Shands Hospital!

On the up-side, Parker has picked out really cool colors for his new light wheelchair that we hope gets approved.  We had a fabulous time at our Boggy Creek Family Weekend and Parker’s Pal came and visited him in the infusion room Friday.  Thank you so much Mina!  Logan is planning the most amazing Family Connect Day and we have so many fabulous speakers and volunteers and a wonderful venue.  And all our laundry is done!  Very therapeutic ;O) 

Logan and Parker had so much fun at Boggy Creek with
Mina (he lost a bet and had to wear a dress...it was Pirates and "Princess" weekend) and Jake!
Thanks guys, you were the best and we look forward to the day you are both Docs...Maybe Pediatric Rhuematologists? Hint, Hint.