Sunday, June 17, 2012

Kids with JA are My Heroes!

Parker says, "Happy Father's Day to Dad and Grandpa Nick!"

Parker is still at Shands Hospital.  We are happy to say that he is improving.  Pain is still pretty intense but the meds are helping to take the edge off.  He got up and walked a bit today so that is great.  His doc came in this morning and although he is still symptomatic she was pleased that many of his blood levels are improving.  There are improvements with his ferritin, platelets, white and red blood cells, CRP, fibrinogen, and his sed rate is good.  She said that with the study she is seeing improvement in the blood first, so this is fabulous news. 

Swollen hands with red tips, greyness between joints,
paleness on hand

Red heels

Parker's abdomen and kidney ultrasound was good.  She does want to keep him in the hospital though because of the pain, pericardial effusion, stiffness, swelling and she is still waiting on some labs and she ran his immunoglobulins today.  He seems to breathing easier today.

We feel so fortunate to have such an amazingly thorough group of pediatric rhuematologists helping Parker.  In the last four days, he has actually seen all 3 of the docs and Michael and I know that their 3 brilliant minds always have Parker's best interest in their hearts because they not only treat him medically but with loving care.  We know that Parker has been difficult to treat and we appreciate their forwardness and honesty and their ability to explain things so that we can understand the whys and next steps and choices we have to make.  So, although it is never fun being in the hospital, we know that he is in excellent hands.

We are glad that Parker has moved past the "placebo phase" of the RAPPORT study and he says he has no regrets in doing it because he knows that he is helping find a cure.  And although Michael and I are incredibly sad to see our son in pain and that this darn disease has once again gone after his heart, we too feel that this next phase of treatment brings much hope. 

Last night was methotrexate night (all those families out there who have "shot night"...I feel for you all). We all thought Parker would be getting it as an infusion in his port....but because of the study and not wanting to compromise anything, it was ordered sub-Q (shot form).  Parker had a melt mind you, he had his steroids increased again and he has been scared and then he was told he was getting the shot form...oh my gosh....we both were in tears.  He is fine with shots...but this method of giving him the methotrexate really makes him very nauseous and he was afraid he would puke.  Remember his stomach has also been really bad and they have been treating that along with the heart since they think his gastritis is flaring big time.  Methotrexate (for those of you who don't know) is a chemo drug and they not only were giving him a shot but an increased dose.  He finally agreed after much coaxing to do it.  They gave him IV zofran first to help and we did it right before bed so he could sleep through the worst part and I lay with him all night. 

It's crazy how I can hold it all together through so much and then something like this shot sorrows me to the core,especially since the doc is talking about continuing the shot.  For the last several months he has been doing the pill form of this because there is a methotrexate shortage of the shot.  And Parker really prefers the pills.  But we also think that the pills is what is irritating his stomach so bad.  I really hate systemic juvenile arthritis...I hate that we must treat it and so many of the drugs are so harsh that you have to give drugs for the drug side effects.  And yet, to not "treat" could have very grave consequences.  And , somehow these little kiddos endure it all....they truly are my heroes forever and ever.

Parker's brother, Logan, came to see him yesterday with Michael (Dad) and Great Aunt Sandy and Uncle John.  That was such a treat for Parker.  Especially when Dad showed up with a tattoo on his arm, just for Parker.  It says "Kids get arthritis too.  Parker's Purple Playas."  All the nurses and docs loved it too!  Pretty cool, huh!

We thank everyone who has checked in with us and who are continuing to say prayers.  Parker sends love out to all of you!


  1. I love your honest outlook. My heart breaks for Parker and you all. You are an amazing family. I pray the new study bring much needed relief soon! You are loved and prayed for. BTW-Awesome tattoo Micheal!

  2. I miss seeing pics and reading about our amazing Parker