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!
When raising a child with a chronic illness like Parker’s, we find ourselves reflecting on life’s gifts.We are incredibly grateful for the medical staff that surrounds our son.Their wisdom and expertise have definitely been challenged this year and they continue to strive to problem solve and find the best possible solutions.We are seeing some progress…slowly…Some days bring us much happiness as we see a glimmer of HOPE when Parker’s smile returns and his voice has energy and movement is smoother.But there are those days that cause us to pause for we have realized that we have to make some adjustments and accommodations to how we live.This is the window into our life that others outside of the world of “juvenile” arthritis do not see.
As we walk with HOPE, we do not want to dwell on the hardships but we so very much want the world to see into our window.We want the world to support these children.Arthritis comes in many forms and for some time now, there has been lots of discussion on how unacceptable arthritis is…but the world doesn’t realize that our children’s arthritis is VERY different than grandma’s and grandpa’s arthritis (and yes, that too is unacceptable).But, people somewhat expect elderly folks to have some aches and pains… People do not expect children to be in pain, and they especially don’t expect children who are so darn cute and happy to be living in pain. In fact, some children get so good at dealing with their pain that perceptions are that they are “faking it”…I hear this from many families. But our children do live in pain, every day…and they learn to “accept” it because they need to endure and push on and move forward.
Friends in the Infusion Room
And that endurance is to be greatly admired and celebrated.Last Friday, we spent the day in the infusion room.On this particular day, there were multiple families present who had children with some form of juvenile arthritis (systemic onset, dermatomyositis, polyarticular JA, and overlap syndrome).There were also two children with cancer.I completely marveled at the strength, compassion, and wisdom of all these children.They each are on their own journey but they are also “together” helping each other.They talked about their treatment, their school issues, their boo boos and some also talked about their favorite games, funny events, and accomplishments.But the best was witnessing their smiles and exchanges of hugs.I was deeply touched by one girl, who was in a great deal of pain, who comforted and cuddled a smaller girl and allowed her to hop into her recliner with her.And there were two boys close to Parker’s age who chatted away with Parker.
Mom and Parker
And I was grateful to have one of my dear friends by my side on Friday…I knew Parker’s blood work was not good but I didn’t realized how bad it was…just her presence made it easier to hear about how Parker will need to continue receiving IVIG every four weeks because his immunoglobulin levels are too low and none of his vaccinations took…all his titers were off.For those of you who have been keeping up with our blog, you already know all about this…but for those of you who don’t, you can read the post done on 12-30-11 to get up to speed.The good news is that the IVIG will hopefully build up his immune system and through the plasma of other’s blood his titers are expected to improve because the donors have all received vaccinations…so it will be like he is receiving them through other’s donations…what a gift!We return in two more weeks for Parker’s second IVIG infusion.He is also continuing with his increased dose of Actmera infusion and the once a week shot of Enbrel.
Since our journey has started, Parker has been asked to “rate” his pain.He is not a fan of the number system of rating pain.1 is great, no pain, happy…. and 10 is the worst pain possible…well, he has pretty much been at a 10 with an occasional 8 or 9 since 2008.However, this week, HOPE shined its beautiful light on our strong kiddo.On Wednesday, he was a 6-8…but on Thursday afternoon, he announced that he was a 4 from the shoulders up and a 2 from there down.I did the party dance around the living room.Needless-to-say, we celebrated this wonderful news with the doctors and nurses and friends on Friday…even though Friday’s pain was creeping back up to a 6-8.This is HUGE!We are NOT changing his treatment plan and we are going to continue down our path.
So remember that window into our “life” I was talking about, well yesterday and today have been hard again.Parker is even having a hard time just playing video games (which can usually take his mind to a less painful zone).We find that we try to explain “why” he is worse:it’s colder; he had his infusion…he will bounce back…Well, who knows…but it is just harder.He is sleeping more today and last night he had trouble breathing and had to be nebulized.These are the days no one “sees”…but we just slow down a bit, take it easier, and try to focus on other things to help him take his mind elsewhere.We so want these days to go far far away.
Dad and Logan
And then there is Logan’s current journey.If you read Michael’s funny blog about Logan’s recent hospital stay, you know that his childhood migraines have taken a twist.Some of it seems to be related to his fluctuation in his hormones/puberty.But in addition to his migraines, he is now having cluster headaches and the stress of our lives certainly cannot be helping matters.We are still waiting to get in to see the new neurologist who is with the university’s headache research clinic.His appointment is the 25th and until then, the anti-inflammatory is helping some; he is still taking his migraine meds; and he is on home oxygen therapy.However we just found out this week that the oxygen therapy can only be a temporary fix since too much of it can burn the lining of his lung.Jeeze Louise…why didn’t they tell us that we he was discharged from the hospital.Fortunately, we have an amazing family practitioner who filled us in and she is also running more blood work.Again, we love the medical staff supporting our children.
But as hard as our journey has been, we are truly a happy family who is just having a hard time right now.I am incredibly fortunate to have Michael in my life.His sense of humor lightens our days.We share responsibilities and our boys deeply love each other.I am in awe of the parents who journey this without a spouse to support them and help them make decisions.
We are also so incredibly thankful to the support we have received from our family and friends.We know it’s hard to watch what we are going through…and it has been hard for us to ask for help.But we need help…yes, I am saying it…
Giggling in his dreams as we approach the hospital.
Most importantly, we need more research on Juvenile Arthritis and auto-immune diseases.Our children need a CURE. We are looking for friends and family to walk with us on May 5th in hopes of a cure.We would love for you to join us.We will be the sea of “Purple Playas Pounding at JA” in support of Parker and all others with JA, RA, OA, and all the other A’s….Registration is FREE.Click here to join Parker's Team Page
We continue to HOPE for a cure; we pray for a cure; we educate others to advocate for a cure; we walk for a cure; and we will continue to always always fundraise for a cure!And just as families who have children with cancer want to hear that bell ring when a child with cancer is cured…we (JA Families) want to hear our bell ring too, so that our children can leave the infusion room with a cure!ALL our children need a CURE!