My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Thursday, December 1, 2011

Am THANKFUL for where we are today!

Looking back at 2011, I have to admit I am thankful for where we are today.  We will never give up HOPE to find a cure one day or be able to experience remission or hear the bell ring!  This year was busy indeed- but am thankful for the friendships I have made along the way. I am also grateful for my parents who have been beyond supportive of Bobby and I  and our treatment decisions and everyday life decisions for  Jake & Hannah.  Dr. Elder and her staff have been outstanding and just as determined as us to help control the disease.  I originally was asked to create a blog for the Arthritis Foundation last year. I was hesitant as to if I really wanted to share this journey to complete strangers.  Because I have shared our story to friends, family, complete strangers through the internet and even to our Congress in Washington DC, I feel we are a few steps closer to making progress in this disease. This year there has been 6,332 viewers of my  blog.  I often get private messages/emails from people across the country thanking me for sharing our story.  It's amazing to feel the connection with others who walk this similar walk in life.  All of a sudden, I feel as if I am not alone in this journey with Jake and Hannah.   We have a unique story and I hope to help others who are also battling this disease and encourage people to speak out and let your local Congressman know that Arthritis is not OK. It has to start there...... we desperately need more research, better medications and find a cure for these children like Jake and Hannah

Hannah is 7 years old- living with Systemic JRA.
As I reflect back over the past year, I am thankful for many of our outcomes and decisions we have made along this journey. I am thrilled Hannah's upper and lower scopes did not show any indications of Chron's disease. Enlarged liver/spleen/lymph nodes and significant abdominal pain is enough! We were fortunate to have Hannah and Jake both  fight  the Rota Virus  and H1N1 virus. Yes- Thank you Lord for letting them be strong enough to bounce back in no time at all! Hannah's eyes-- after several weekly eye appointments, steroid drops, Hannah got the GREAT news of  "No Cells". That was one of the best appointments in 2011.  Jake and Hannah both have been on a few biologics this year ( Enbrel/Remicade/Oriencia/Actemra), but we keep trying to tweak medications to find relief and better control of disease.  I think we are getting there..... The combination of Methotrexate, Celebrex , Enbrel and high dosage of Actemra seems to be decreasing inflammation, fewer fevers, rashes, and better labs. YEA!!! Of course we try just about anything & everything along the way, too.  Jake & Hannah both got physical therapy, occupational therapy , aquatics, and counseling weekly. Yes- those were some busy weeks trying to squeeze in minimum 8 appointments weekly, after school hours and get homework done  and to bed at a reasonable time! We did that until insurance dictated days were maxed out for the year. We also got orthotics, wrist splints (day & night), knee braces to help with everyday joint pain/inflammation.  We have also tried full body massages and joint injections (wrists & knee).  One of the BEST decisions we made this year was to homeschool Jake & Hannah through Polk County Hospital Homebound program. I followed my heart and all of us could not be happier!

I am also grateful for our doctors who advise the aggressive treatment approach for Jake and Hannah.  Jake & Hannah's recent MRI's (cervical/jaws/knee/wrist/hands) were all good.  Our doctor was surprised himself but said it was only because of their treatment and the aggressive medications! For the first time, I felt good about pumping my kids with all these toxic medications! We also made the decision to have Jake & Hannah get ports. It was a hard decision to knowingly take away more from Jake & Hannah........but they LOVE the ports! Infusions every 14 days is so much easier with ports! Once again, I followed my heart and am thankful for our decisions!

During 2011- our family was able to share our story on Capitol Hill.  Wow-- wasn't expecting it to be emotional to share our life in 5-10 minutes! Thinking about all the tears I have wiped in the past few years was difficult to share and paint a picture of our family's day to day life!  I am beyond satisfied that our local Congressman, Dennis Ross joined the Arthritis Caucus. Thank you, Congressman Ross!

Bobby and I could not be prouder of Jake and Hannah. They have done amazing at accepting the disease , medications, treatments, and the zillion out of town medical appointments and all the things they can not do like their peers. It's hard on us as parents and even more difficult for Jake and Hannah to have to explain to someone about their disease.  We continually hear, "but they look so healthy".  It's wonderful that I no longer have to explain to educators about why we miss school for out of town medical appointments, or why my child may be a bit hyper the day after infusions due to steroids, and why my child is excused (per 504) from excessive running in PE class!  ohhh yea- I am thankful for home schooling! I no longer wipe tears at night because my child was laughed at by peers and said he looks like a "discovery child" due to wearing splints, and I don't have to explain to a PE coach that my child has internal organ involvement and really does have abdominal pain and really should not be made to sit out of simple games because she didn't run the football field as a warm up.And I don't have to explain to a car line volunteer why my child isn't going to school  even if she does look cute & smiles with a 102 fever and hasn't ate in several days and is in significant pain and being carried from room to room. And I don't have to worry about a teacher feeling she doesn't need to share with me when a child in class has chicken pox or H1N1 virus or half the class is out with strep throat. ohhhh Yes I am so thankful I don't have to explain to teachers that my children have not been vaccinated and are medically exempt NOT by choice! Jake and Hannah miss their friends at LCS but are overall much happier  & healthier being homeschooled. I am appreciative for my friend, Nancy who got us through the first 9 weeks of  "Sloan Siblings Academy".  The Hospital Homebound program is the perfect fit for my children right now. 

Many people in our community have reached out and helped us one way or another or even prayed for our children.  Hannah's dance teachers have been exceptional kind and understanding!   It's people like Miss Carol who have experienced sickness with a loved one that UNDERSTANDS. Our church pastor continues to pray for Jake and Hannah and calls for updates to direct prayer with his staff at FUMC. Many co-workers of LFD and LCS friends supported our family in the Polk County's Arthritis Walk. Our family has raised over $25,000 in the past 3 years. This money raised has a huge impact on our family and truly gives us HOPE for better medications and a CURE!  We are also appreciative for our family who lives out of state who has kept our children on their local church prayer lists. It's humbling to think strangers in another state are taking the time to pray for our children and we THANK YOU!

Jake is 9 years old - living with Systemic JRA.
We work very hard at making the best out of this situation and keeping a positive attitude. There is nothing I would not do for Jake and Hannah and the other 300,000 children who also suffer from JRA (Juvenile Rheaumatiod Arthritis). This was nothing Jake and Hannah asked for  nor was it ever something Bobby and I ever thought we'd be raising two children with JRA.  We were sad to learn earlier  this year  that Jake is also Systemic type rather than Polyarticular.  I guess it goes along with our less than 2% chance of having 2 children with JRA.( Less than 10% of children with JRA are Systemic type.)   We cherish our friendships with other children who also have JRA and their families.  Jake & Hannah both were able to attend Camp Boggy Creek this summer.  Camp Boggy is such a special place and is over flowing of LOVE! We look forward to the annual JA Conference, Camp Boggy Family weekends, Family Connect Days and any opportunity to be with our "Arthritis Family".

As we look back at 2011 happenings in our JRA Journey- we know we have a lot to be thankful for.   We will never give up HOPE to find a cure and hear the bell ring! Thank you for those of YOU who have helped our family keep our smiles and faith strong as ever!


  1. it really irks me how ignorant schools can be when your kids "look healthy"... so glad homebound is working so well and that you ARE sharing your families journey with all those who will listen and learn. Im always inspired

  2. Certainly much to be thankful for...keep up the fight and advocacy and I am so thankful to have the Sloans in our lives. We love you!
    The Lentini Family

  3. The cruelty of man kind and such ignorance of some people. Kids are kids no matter the disease, or condition. They want to have fun, and enjoy life just as we do. It seems unfair now that they have to go through it, but in the end it makes you a better person, and more strong every day you live, you love the days more and more.

  4. I've had such a hard time keeping up on anything lately. I'm so happy to read that the homeschooling continues to work so well for your family, and that the kids appreciate their ports. I think that is so important. Yes, what a busy year it has been for you. We are so blessed to have your family in our lives. I appreciate you all, your wisdom and support. Love you all!

  5. Thank you so much for your blog. My heart goes out to you and your family as I also have a child with Systemic Onset JRA (Still's Disease). My little guy also has Down Syndrome and may be the only child with Down's on Actemra. He's been on Actemra for 5 months. It's been the only thing that has normalized his labs, but has not handled his pain completely. He also just recovered from pneumonia for 3 months. What a challenge this disease is and all it's complications. I appreciate someone putting it out there about how very serious this is and how people often overlook the seriousness of it. It's a VERY serious diagnosis.

    Best of luck to you and your family! Many blessings to you.
    Nila in Colorado