Parents, big brother (with enthesitis-related JA), and warrior sharing our perspectives of Juvenile Rheumatoid Arthritis, a painful autoimmune illness affecting joints & internal organs. JA affects 300,000 children in the US. Many also have other autoimmune illnesses. There are multiple forms of JA; some less severe than others. Parker has systemic onset JA with overlap syndrome, hypogammaglobulinemia, severe allergies and asthma. We proudly pound at JA together, HOPING for a cure!
So we headed to the Gainesville for our first Actemra infusion treatment on Friday…but first we made a very important stop.At our last visit we met the medics who fly the ShandsCair and they invited us to come see them at the helicopter pad.It was one of the most amazing things we have ever done.These men are so incredible.They helped support Parker so he could walk into the hanger and then they lifted him into the front of the helicopter.They totally engaged him and then I saw the biggest smile I have seen on Parker in the longest time as they told him they were going to drive the helicopter out of the hanger, with him in it.Tears of happiness streamed down my face as Parker road backwards into the sunlight.They were so compassionate in taking the time to make this visit so special.Their heartfelt time was truly a gift that he and I will cherish.I thanked them for making this trip so incredible.Simple acts of kindness are so beautiful.
As many of you know, Parker’s doc changed his infusion treatment Friday from Remicade to Actemra.We were concerned that they would want to cancel it because Parker had the starts of a sinus infection but we got enough antibiotics in him prior to his infusion and he wasn’t running a fever. Whew!The first infusion started with pre-meds. Then he got the Actemra…no reaction and so that’s a success so far.We got there at about 1:45 and left about 5:45.Faster than Remicade; that’s a plus.And we stayed an extra half hour to keep our little friend Sadie and her mom company; since they were the last 2 in the infusion room.It was so nice to connect with them and the kids enjoyed each other so much that we went to dinner together.Us, moms also got a chance to connect. Sadie gave Parker "Happy" the hippo. After dinner, they came back to our hotel to swim...but it was too cold. So Sadie's stuffed dog, Lemondaide, met Parker's tiger. It was a nice end to the day.
I had the chance to talk with the doc and PA and they helped me better understand what we were dealing with.Parker has probably had systemic JA for some time and they still think he also has psoriatic JA also because of the nail pitting.They are going to keep a close eye on his blood levels and symptoms, along with the joints and organs.They also explained that his blood work shows weird patterns and that in combination with some of his extreme muscle weakness and blood vessel patterns it is leading them to do further diagnostic tests.One of the glaring concerns is his CRP numbers.He had a CRP of 79.6 and norm is 0 to 4.9.They said that this is a big inflammation marker.They also feel that his platelet count is on the high side.And his kidneys are dry (proof that he needs to drink more).So they explained that they are hoping the MRI will give them some more answers.They admitted that Parker has been a challenge and the doc feels that what is going on with him is rare.
Parker and I both had a hard time sleeping that night in our unfamiliar hotel bed.I am sure because we were both anticipating the next day, but also because there was a dog barking next door.But when morning came, I gladly awoke to face the day.I let Parker sleep…he was running a low grade fever.When he got up; he was all about the buffet.He loved his eggs and waffles.He is so funny…he thinks buffets are the best thing about hotels.It’s the little things that just make me giggle these days.
We then headed over to the ButterflyGarden and the HistoryMuseum.We had such a great time together.Two butterflies landed on each of us; so we knew we were going to have a good day.What a lovely garden.A must see.Parker took a gazillion pictures.
The MRI went well and I thank the doc because she had him take benedryl and morphine prior to the scan.They scanned his pelvis and legs; then they repositioned him and did his jaw.For the final scan, a crank was placed between his teeth and his jaw was slowly opened, until it hurt.He went back in the tube for the final scan with his jaw locked in that position.That moment was hard for me to watch.I just couldn’t hold it together any longer.As they did this last scan, I silently sobbed in the corner, fully aware that I had to pull it together before he could see my face.I am so very proud of him.The tech said that most adults can’t do that test without protest and he held perfectly still.She didn’t have to rescan anything.I do think he was determined to spend as little time in that thing as possible…he is so resilient.We had to bring in a non-magnetic wheelchair to get him off the table to his wheelchair in the hall.He almost fell in the transfer to his wheelchair but he did it.We were done!The good news is the tech said that she was sending the pics over to the radiologist to read that day so the results would be waiting for the doc on Monday.They did say they would probably also get an ortho consult and that might take another day, but that means we may know Monday or Tuesday if he has dermatomyositis and/or vasculitis.