My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Thursday, December 15, 2011

Finally, I see the light! Yes- Sloan Siblings have made PROGRESS!

Finally, I feel we are making progress and have seen the light!  This journey is draining and a struggle everyday, but I am pleased to share we have finally seen progress!  We never understand why things change ( better or worse) but we celebrate and enjoy the progress when it comes.  I give much of our progress praise to Dr. Sukesh at Shands.  And I also firmly believe Jake and Hannah are doing better because of medications adjustments and HOMESCHOOLING!  Yes- I did say, Homeschooling!  This week, Bobby and I have tucked our kids in bed and shared our JOY and thrilled to have finally seen progress in both the kids! We are never sure how long it will last, but are always appreciative to have good days or even steps in the right direction.

Dr. Sukesh is the new pediatric rheumatologist that joined Dr. Elder and Dr. Modica late this summer at Shands.  In September, Dr. Elder and he recommended we increase Jake and Hannah's Actemra, add Methotrexate for Hannah and consider doing joint injections for Jake & Hannah.  Well- we agreed to the recommendations, but still didn't see the progress, as we had HOPED to see.  Next, we added Toradol for Hannah and added Enbrel back for Hannah (weekly injections).  I'm happy to share , we have seen PROGRESS!   Hannah is bouncing through the house and not fatiguing nearly as much, joints look much better. Her right knee is still swollen- but she can bend it much better than a month ago. Her fingers and wrists aren't nearly as puffy- however they still hurt daily. Hannah continues to complain a lot about her neck, back,knees, hands and wrists but the pain seems to have decreased!  Her labs are better, rashes are fewer and fevers are seldom!! Yea-- now that's a great praise report!!  Because we homeschool- she isn't nearly as  sick as when she was in a classroom daily even though she's on two biologics (Actemra and Enbrel). Dr. Sukesh shared with me that Shands is the only group who is treating their systemic JRA kids with Actemra and another biologic.  There are much more risks involved- but she is being monitored closely! Hannah  isn't tolerating Methotrexate very well ( headaches/nauseous/ poor appetite/tired/vomiting).  But we have added Zofran and been a little "flexible" with schedule.  It was a wonderful "mom-prescribed break" of skipping MTX during the Thanksgiving break. We are trying to get back in the groove. I find it so hard to give Jake and Hannah Methotrexate and then see them the next 2-3 days feel so badly because of the MEDICATION I gave them in hopes that it will help this disease.  I have to admit- I am very weak here!   Today- we are experiencing the steroid high and tearful moods while being pale, tired, no appetite and nauseous. What a day today has been and on top of that had a very long pediatrician follow up appointment and she was tested by hospital home bound teacher required for upcoming IEP.  But at the end of the day, I know we have made  progress and I am THRILLED!

Our progress is not just with Hannah, Jake has showed great improvement as well.  Jake also had joint injections in both wrists and increased Actemra infusions to the maximum dosage possible.  We joke around and say our trip to TN helped our kids feel better. Not sure, but that's when things started to improve.  It is so nice to have our Jake back in the evenings without his fevers. Actemra has proven to help reduce his fevers, rashes and improve labs! Fevers do still appear in the late afternoons/ evenings but not as nearly as frequent. Jake continues to have joint pain in most of his joints but the pain level has decreased! He's not nearly as moody and miserable and has tolerance for others much better! Makes the Sloan household much more peaceful! Jake's costochondritis is worse presently.  There is nothing more that we know to do.Jake is already on maximum medications to treat pain/inflammation. It's one of those things you just have to wait for it to improve on it's own. . Although- our family has met a great contact through this blog who has offered to help get Jake fitted for a special chest brace to help with his costochondritis.  I am exploring options and thinking about a trip to New Jersey-- anything to help ease Jake's daily pain!  If you have ever had costochondritis or know much about it......You know it's painful and mimics a heart attack! Right now Jake isn't super conscious about his body.....but I know those days are coming!  His chest is very obviously- SWOLLEN and his port sticks out of his skin even seeing the tubing running through his chest!  As we celebrate fewer fevers, rashes and better labs......Jake has unfortunately lost more unexpected weight.  We are thrilled that he is still growing in height, but he is literally skin and bones. Jake is 91/2 years old and weighs 55 pounds and has slipped down to 21% in weight and 50% in height.  He doesn't like that Hannah has passed him in his weight.  He continues to deal with frequent diarrhea, abdominal cramps, poor appetite, episodes of throwing  up and recent blood in his stool.  So.....he will be followed by a pediatric GI to schedule a upper/lower scopes to look for IBD or other related issues in January.  Depending upon the outcome, we may have to make medication changes for Jake.  Trying not to even think about that-- We finally found the one and only approved drug for Systemic JRA children and it's helping!! We certainly don't want to start all over and go backwards in his treatment.

Our other great news is we have finally found a great, confident, experienced Pediatric Craniomaxillofacial  Surgeon for Jake at Arnold Palmer Hospital for children.   Dr. Modica recommended Dr. Ruiz and spoke directly to him and  confirmed that he was able to treat Jake.  We saw Dr. Ruiz last week and came out feeling so relived to find him. I was excited just sitting in the waiting area as I read over his brochure and types of children he treats! Yes- it was printed right there, " Juvenile Rheumatoid Arthritis- Related Jaw Disorders".  He was fantastic, thorough and very knowledgeable with JRA/jaw related issues. He has performed many surgeries for children with JRA who had to have rib removed and used for the jaw bone. Jake doesn't need this surgery at this time but explained to us that it is something to be aware of and know the possibility of needing it down the road.  We will see him again in January to decide if we want to treat Jake by doing the aristospan injections. I will also be bringing another copy of Jake's jaw MRI. Unfortunately, provider didn't copy jaw MRI adequately  for Dr. Ruiz to review.  I think we have made the decision to do the Aristospan injections , but deciding on when? His jaws are currently not at his worse, and Dr. Ruiz would rather wait until Jake is at his worse to see the optimal benefits. We are super excited to have finally found a  doctor who can treat Jake's jaw issues.  For those of you who aren't aware, TMJ can lead to lifelong pain, disability (mouth opening), dysfunction (chewing), and facial dysmorphism. If we can prevent surgeries down the road and ease some pain and improve mouth opening and be able to more foods, I feel this non-invasive injection is worth a try!   Yea-- We get to save a trip to Birmingham, Alabama because that was our next stop to find a option to treat Jake's jaw issues.

Hannah & Jake shared their story. Have you met with your local Congress?
As Jake & Hannah's mom, only I get to see and watch every step in this journey. Some people with close contact with us are probably still trying to figure things out, but it's hard to see the whole story when this disease is invisible and kids fluctuate  so much within a day.  I am thankful for their extra energy and love for life! I often wonder where we'd be today if it wasn't for their spunk!  I am so proud of Jake and Hannah for always putting their best foot forward and being such good troopers at running around to our zillion out of town appointments, or accepting we can't do things because one or both of them aren't up to it.   I know they have become so use to riding in the car and sitting in waiting rooms and listening to the details of their diseases to health care professionals. Physicians are amazed that Jake and Hannah know their medical history in detail, can name medications and dosages, ect...   No matter what the appointment- most all medical professionals are so intrigued by seeing two siblings both with systemic JRA.  Wish it wasn't our story to share- but it's more than a story.... it's our day to day life! We already have 14 medical appointments on the calendar  for January. But I take a deep breathe and am thrilled we no longer have the tears and school stress- we'll get our school work done in between our crazy schedule. I am also fortunate to have my husband willing to work so hard ( 2 full time jobs) to be able to provide for his family and assure we're able to put the gas in our car and pay our co-pays for all these zillion medical treatments/ appointments.  We've tried really hard this year to let medical bills be what it is...... we'll get them all paid oneday!  It use to stress us out and be so worrisome...but the truth is, we don't have a choice to treat or not to treat! God has always provided for us.....we are blessed in so many ways!  Hoping for more progress and good results for Jake in his upcoming upper/lower scopes and TMJ injections.  Thank you for following the Sloan Siblings in their JRA journey. We appreciate the prayers and words of wisdom.  As far as myself, I was suppose to be starting Actemra this month. I shared with my rheumatologist that I wasn't able to commute that far for infusions with homeschooling kids and working around all their medical appointments.   My body is certainly feeling my Rituxan running low.  My heart is acting up again, but trying to get extra rest my body is requiring and hoping it just goes away! Thanks for all your prayers and support! We are overjoyed to see some progress for Jake and Hannah! We are no where near pain free days or even close to remission, but we'll take PROGRESS! We're ending our week by participating in Lakewood Ranch Jingle Bell Run.  We are super excited to see our special friends (Sami and Daniel) and supporters of the Arthritis Foundation.

Merry Christmas to each of you. Hope you are able to "Raise your Hand Against Arthritis" in your community, too.It's going to take your voice to help get more research for better medications and possibly a cure one day!  It simply isn't acceptable to live this way- no matter what your age is!  Thank you for those of you who have supported our family! Merry Christmas!

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!