|Swollen hands with red tips, greyness between joints, |
paleness on hand
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 down...now 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!