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!
I'm am Parker and I am going to try blogging for a little bit. So, it was Christmas morning and there was a present under the tree that my mom and dad wanted me to open. There were 2 packages tied together with ribbon. She told me to open the bottom one first. So I did and it was a purple Nikon Coolpix camera! I didn't even ask for a camera and I got one! So I decided to take pictures with my camera all day and here are some of them.
The first one is Logan, my brother, with his big muff fuzz guitar peddle. When he opened it up he almost cried. He loved it so much that for the rest of the day he was hugging it. The second picture is Dad with the Ov-glove. I got an Ov-glove last year because I like to cook and I loved it but my dad used it more than me. So this year, my mom got an Ov-glove and my Dad claims that he now has 2! The fourth picture is of me and I got my Grandpa Tony's gold watch that he wore almost every day. And it means a lot to me because I didn't really know him much so to get one of his things is really cool. My brother also got one of his gold watches and Logan says he wore it a lot too.
The last picture is of all of us together at Christmas dinner. It was very wonderful being with friends and family and eating our wonderful dinner.
So now that you've seen my first post, I hope to keep you posted on all my future posts and my great photography.
As I sit to write this very first blog, I wonder how to start putting our "journey" into text. And I wonder if putting our experience in print will somehow make this experience even more real...too real. It's been 2 long years, yet it seems like yesterday I watched Parker play and excel at every sport he tried. He would literally run circles around his older brother...we use to tell him to slow down...but today, I am pushing him in a wheelchair just so that he is not left out of fun and can participate in his community.
Two years ago, Parker got very sick and spiked high fevers that lasted months and months. He had weird rashes and reynaud's. We knew he wasn't having an allergic reaction because he has also had severe allergies and asthma since he was 18 months old. These rashes were different than hives and they would disappear as quickly as they came and would come and go. He also complained constantly of pain in his neck, back, hips, and legs in those first few months. His lymph glands were very swollen. His primary doctor began running tests and referring us to his regular allergist, an immunologist/allergist, and a neurologist. He had tons of blood labs, CT scans, MRI's, bone density scans, x-rays, brain scans, GI and bowel scans...and at first the only thing that would come up as positive was sogren's syndrome and a few other levels were off. The primary doc suspected juvenile arthritis but the expert immunologist/allergist said no because Parker's intelligence was so incredibly high (WHAT?!)...and he diagnosed him with fibromyalgia and we started PT and continued seeing the neurologist.
The primary doctor continued to monitor him and express her concern and at one point (called us on Christmas Eve) to tell us that he might present with lymphoma and that it often doesn't show up in blood until years after it progresses. So she has continued to measure his lymph nodes throughout these last 2 years and every time she takes out that measuring tape my heart jumps a beat.
The neurologist couldn't seem to figure out what was going on...then Parker started seeing spots and headaches were getting worse and the neurologist talked privately to my husband and I to tell us that this was all psychological and that I (mom) was likely making it worse for him. This was a very difficult time as we realized that he was sharing these thoughts with Parker's primary and she also talked to me about psychological help for Parker and myself. Yet, as my husband and I talked through what was happening we realized he was not catching something...Parker's teachers and school nurse even were sharing physical symptoms that they were very concerned about...paleness, extreme fatigue, difficulty walking, falling, fevers, rashes...and yet he had "good moments/days". I think that this confused matters. Then we realized that the med that the neurologist put him on had side effects of head aches and "seeing spots"...duh?!
About a year and a half into tests and multiple specialists, we switched to the partner of the immunologist/allergist because he also had a office near our home and he specialized in immunology/rheumatology. After 2 visits, Parker got the firm diagnosis of Juvenile Arthritis. So we came full circle. I called my husband immediately and then called the primary to tell her she was right all along. It was quite a moment for us...it was not psychological and we thought...oh, this isn't that bad...it's arthritis...we can deal with that...well, we had no idea where our journey was going to take us!
We are now seeing an amazing doctor at Shands Hospital (about 2.5 hours from home), but totally worth the drive. We have been with her for about 4 months now. It's been a very intense four months as we have tried to decrease Parker's steroids (on them 8 months now) and add medications that are suppose to slow the progression of rheumatoid arthritis (we are told it's not curable...but kids can go into remission). For the past 3.5 months we have been giving Parker 2 shots each Friday night. A biologic drug (enbrel) and a chemo shot (methotrexate). No luck! So a few weeks ago Parker went to the hospital for an infusion of sulumedral (1,000 mg)...to get him over the hump. It worked for 3 marvelous days. Parker was his old self for a moment in time. He then got worse...much worse...pain and swelling has been horrible and steroids were once again increased. Parker has pain in every joint...even the little ones in the ribs and jaw and toes... Then we got the call! Parker's JA is progressing. The enbrel is not strong enough. This week we start remicade infusions. My husband and I had to make the hard decision to put him on this as there are little options...see this medication can increase chances of lymphoma 20%...but if we don't treat the JA he could have permanent joint damage and lots of pain. So, we will be going to Shands this week for his first infusion and it could take 3.5-6 hours since they need to monitor him closely and check vitals every 15 min. So I wonder where this new medication will take us...
I wish that more people knew more about how much Juvenile Arthritis impacts a child. It's not just for "old people"...It doesn't just affect their joints...it affect their internal organs, their developing little social selves, school, their former sense-of-self, and the pain...oh the pain...how do they do it?! We are very very proud of Parker. And we can't even begin to talk about how amazing Logan is with supporting his little brother! The night before our first visit to Shand's Hospital he sat at Parker's bedside singing Bob Marley..."Don't worry, about a thing, every little thing is gonna be alright..." We're gonna be alright.