Tuesday, January 29, 2013

Our Son’s Body is Under Attack But He is a Fighter


Michael and I have been processing a lot…should we blog….shouldn’t we blog… We know that people who care about us want to know what is going on with Parker, but we have been processing some hard information lately.  After a family talk, we decided it was time we share…but please know this is hard.  We have been working through a lot and we have been careful with our words because we don’t ever want to over burden or worry our oldest son, Logan, especially since he has been fighting his own battle with vicious migraines.  I am happy to report that these migraines are getting more controllable and along with his medicine and infusions he is now quite good at biofeedback.  His therapist is amazing and we are very impressed with this technique.  Last Saturday he got a migraine, took his meds, and did biofeedback and worked through the migraine and it went away.  This is pretty major and we are so proud of him.

One reason we haven’t blogged lately about Parker is we wanted to first find out how Logan is processing all of this.  He is in a better place now and he wants us to continue to blog.  Then there is Parker, he has been processing some very intense and heavy thoughts because we got some additional scary news about a week and a half ago.  We are quite proud of Parker too.  He processed his concerns aloud with me and his counselor.  He too wants us to share what is going on.  Michael, the boys, and I have prayed and talked and processed and we feel that others need to know because we need support; we want others to learn about the various paths this disease takes; and we need help raising funds so that one day there will be a cure for children with juvenile arthritis.
Parker has complained for quite some time that his chest hurts.  In fact, he has had chest pain throughout this battle against systemic JA.  Several times it has been costocondritis (there are joints in the rib cage and they can become inflamed and painful), other times it has been the pericardial effusion (swelling of the heart lining), and sometimes it was his asthma.  But even after his last round of pericardial effusion he has continued to complain.  And when we were at the rheumatologists this last month he was having the pain again so they ordered a stat echo cardiogram.  It came out fine.  Thank God.  So then we talked about how maybe since we have been trying to decrease the steroids, that maybe it was his bodies way of saying “hold on…I like those steroids…I am use to them…now I have to work harder to breathe…”  So we thought maybe it was causing his asthma to flare because he is so steroid dependent now.  But, he also had been on this dose of steroid for over a month now. 

We decided it was time he see a pulmonologist to get help with decreasing the steroids.  Because Parker’s rheumy is about 2.5 hours away, she suggested we go to our local allergist (who knows Parker very well) and get a referral to a local pulmonologist that she recommends.  So we went and the allergist ran a PFT (pulmonary function test)…he failed…moderate obstruction.  So she increased Parker’s inhalant steroid and sent us to the pulmonologist for consult.  At this point, we were seriously thinking this was just his asthma (please don’t take me wrong…asthma is serious too…but you have to remember we have been dealing with asthma his entire life and we have felt like we totally had that medical issue under control). 
We went to the pulmonologist last Monday…Michael was out of town on business…oh how I wish he would have been home, because I felt like our world had turned upside down just as we had started to roll along a good path.  This newest doctor was such a kind and gentle spirit and I am so incredibly thankful that he had the nurse take Parker out of the room while he first explained to me what his impressions were.  It helped me hold it together better when he later explained to Parker. 

During our visit, Parker did the same pulmonary test again…again obstruction…then they gave Parker a breathing treatment…the doc’s theory was if the test results got better after using the meds then we know it’s just his asthma…if not, then it’s more…  He repeated the regular PFT and once again…obstruction.  This led him to further tests…a more complex PFT.  The spirometer reading was not good…  it showed not only obstruction but also restriction and this means he likely has mixed lung disease. 

So you might be thinking, what in the world does this mean…because I certainly didn’t understand it.  I am still trying to understand it.  Apparently there is no part of the body that is immune to the attack of systemic JA!  When they say it can affect any organ…well, now we really know this.  I mean…yes, it has already attacked so much…but this one organ really hit me hard…The crazy thing is, we have been celebrating because Parker’s blood work has improved so much.  He also had decreased swelling (although we noticed things are starting to swell again…and hurt more…and he is having a few low-grade fevers with rashes), but he has better blood work.  This disease is simply the cruelest thing I have ever witnessed. It teases with your emotions…gives you a false sense of security.   Our understanding is that with mixed lung disease, Parker is having both asthma and interstitial lung disease.  The pulmonologist said that he is like 1% of kids dealing with pulmonary disease.  This explains why his chest has been hurting and burning.  It also explains why he has been sleeping a lot more again.

So, yes, our son’s body is attacking itself!  And we are obviously all concerned about this.  The docs are working together…they are checking his meds, trying to figure out to what extent damage has taken place; we have more tests in the near future; and we are all arming up in our battle gear to fight alongside this JA warrior and win with PURPLE Parker Power.  Parker is strong-willed and we are so very glad that he is because he is fighting for his life and we love him dearly.

19 comments:

  1. Wow... Where to begin?
    Well, I am thrilled that Logan is doing better. I am assuming that his other blood work came back okay? I am so happy to hear that the biofeedback is working well. It always seems to be the things that you wouldn't expect to work that do.

    I was also pretty surprised to hear about Parker's lungs. I am surprised that this didn't get caught earlier. Dr. E & Dr. S are so on the ball, but I guess sometimes things slip through. I am coming to realize that lab work doesn't mean nearly as much as I used to think. I hope they can get a handle on it. Have they suggested CellCept to help? It has helped Emily significantly. I'm not sure if her lung changes that had pointed to ILD were on the echo or the CT, but her last echo 3 weeks ago was good. I truly think the CellCept has had a lot to do with it. Parker's problems are more severe than Em's, I think. She hasn't had the same amount of pain. Her asthma seems to be controlled, also. Anyway, the CellCept has done a lot. It's a DMARD, so it is slow to work, but once it kicks in it is pretty good.

    As always, I love you all. I keep your family in my prayers at least once a day.

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    1. Hey Danielle,
      Yes, there was mention of CellCept last visit. Hoping he won't need it though. Now I am glad he took himself off the MTX. Apparrently it is not recommended with pulmonary issues. I am so glad Em's CT was good this last time. Take care of your "little people" and we need to chat soon.

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  2. I always have you and your family in my prayers. I wish they were able to catch this earlier but pray they figure it all out and soon. I am glad you were able to share what is going on and I will continue to pray. I'm always here if you need a shoulder or an ear as well. Blessings & healing, Dana

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    1. Thank you so much Dana. Thinking of you and yours.

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  3. Rochelle, Michael, Logan and Parker... I am so sorry you are going thru this. I have held on to that wonderful day in the infusion room when we hugged and jumped up and down because Parker didn't have to return for 3 months.

    Today, overall has been a difficult day...trying to see that light at the end of the tunnel. Then tonight, reading this I cried again as I realized it really is,just a kid with a joystick.

    Lots of Hugs and love to all of you!!

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    1. I have to giggle...I know you meant glow stick...but we could use that joystick too. Hoping for better days for all our kiddos.

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  4. Sending tons of prayers and love to you and your family! xoxo

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  5. We met you all in St. Louis last summer---- praying for Parker!!!

    Matthew Firkins (age 14 w/ JA, dx age 13) & Family

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    1. Hey there! Will we see you again this year? We are hoping to go. Thanks for your support. Hope things are going good for you all.

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  6. Rochelle, you are so strong to deal with so much! If all my love could cure Parker and Logan, I would love them with all my heart....but I already do. I feel so helpless. I can only give you support and pray like crazy for a miracle! Some day I want to look back at this period in your life and be so happy that Parker and Logan are completely whole and heathly, leading very good lives. I love you too with all my heart!

    Mom

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    1. Mom I so appreciate your love. Means a lot.

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  7. Dear Rochelle,Michael,Logan and Parker sending a lot of the love and praying your way, I thinking about all you every day.
    xoxo Coach Liz

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    1. Coach Liz, we can always count on you. The day you walked into our lives we were so blessed. I appreciate so much all you do to support my boys and Michael and me. Love you

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  8. Dear Lentini's
    Our hearts, thoughts, and prayers are with you all. Life throws so many challenges at you and you are true fighters. We admire and respect your courage.Keep fighting, we love you. Cindy and Tim

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    1. Hi Cindy and Tim~ Look at that, you figured out how to post! Impressive! We love you and we know you understand what we are going through. Love to you, Wally and Norma and the boys.

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  9. Lentini Family,
    We will be keeping all of you in our thoughts. We are sending positive vibes & healing thoughts your way.
    ~The Gurley Family

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    1. We thank you for your loving support.

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    2. We thank you for your loving support.

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