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!

Sunday, November 6, 2011

Port surgery, MRI's & Joint injections, sedation twice in a week x 2 kids = DONE

I have lots to be thankful for and am so appreciative of our nurses and doctor's coordinating Jake & Hannah's appointments together.  But wow-- it was a hard week to have both children go through port surgery, sedation for MRI's and joint injections all at the same time!  We did it, the week is over and we all have bounced back like nothing occurred at all! Thank you to those who checked in on us during the week.

Port surgery overall went very well. Jake & Hannah both got their ports in the exact location we were hoping for and on the first attempt.  We had shared with the team that we don't want a port for Jake if he had to use right side- upper chest area! That spot was off limits. Jake is a hunter and the shot gun kicks back hard on this area! So when they both came out of recovery- we were pleased first attempts were it!

The nurse had determined Hannah was going into surgery first. This was fine for both of the kids. Neither of them were too nervous and understood this port surgery was going to help make treatments every 14 days much easier. All went smoothly in the pre-op, lots of questions to answer to the team. Amazing how many health professionals had no idea what JRA was and a zillion questions as to how we had two children both getting ports! As soon as Hannah got her first pre-op meds, she got sleepy and the TEARS turned on. I knew it was the meds- but it was still difficult to watch her get soooo restless and cry harder and harder each minute. I was able to go with her in the operating room until her eyes rolled back, body limp and surgeon arrived. I looked at the team- kissed my baby and said, "please take good care of my girl".  Walking away was hard, but I had to stay strong as Jake was waiting for me to come back!  Surgery was to take an hour and half....... Bobby and I entertained Jake as much as we could while watching the clock anxiously for Hannah to come into recovery. 

Surgeon stopped by in pre-op and shared with us , "Hannah is done". But we waited and waited until I can get my eyes on her. When I was able to be with her in recovery- O MY GOODNESS!! She was a complete mess! Her lips were purple and swollen, eyes swollen, and had very unclear speech and was crying uncontrollable while kicking and thrashing around hospital bed! Nurses very calmly tried to explain that she will come out, give her some time! We gave her lots of time, once she was able to speak, everyone heard what she had to say. " Mommy, please take me home, I want to go home, and I want Jakee". But as more & more time passed, she started to talk about pain while thrashing in bed, screaming & crying.  Nurses gave her morphine, then another pain med. Meanwhile, the anesthesiologist brings me my fancy blue jump suit/hat/shoes/mask and says, "it's time to go to O.R. with Jake".  I couldn't walk away from her just then..... I felt so torn to leave Hannah, but I knew Jake was waiting for me to go with him in surgery.  Thankfully, Bobby stopped by and said he'd take Jake and Jake was ok with that!  awhhh.....I slip away to run down the hall to find Jake on the stretcher on route to operating room. I give him a kiss and wish him good luck! I'm wondering about now-- why did I schedule 2 surgeries on the same morning? 

Bobby returns and shares with me Jake was a pro. Closed his eyes and curled up in a ball to go to sleep! Bobby just walking into seeing Hannah a complete mess- he's wanting to know whats wrong with her?? There was nothing we could do to stop her screaming & yelling and thrashing herself all over the bed. Nurses decided to move us to another area- as we wait for Jake in surgery.  As more time passed- Thankfully Hannah came out of her drug induced mess and then fell asleep for about 2 hours. Perfect timing for her to sleep- this allowed me to be with Jake in recovery room.  Jake woke up so calm and peaceful with some pain. Nurses gave him morphine and he was just full of questions about his port.  Jake had a drink and then we went to other area to be next to Hannah and Bobby.    Whew-- surgery done and now being escorted to infusion room for Jake & Hannah's treatments and rheumatology  appointment.

Jake & Hannah bounced out of their wheelchairs as they entered the infusion room to greet their friend, Gavin. It's always so nice to see familiar faces and share your journey with friends who understand it all too well! Assessing ports was a piece of cake! IV's were hooked up and it was by far the easiest day in the infusion room. I'm so happy I took the nurses advice and scheduled IV's immediately after surgery.  We kept kids ports accessed all week and they had plenty of pain meds in them to help with discomfort!  Hannah got her increased Actemra, Solumedrol and added Torodal today. Jake got his higher dosage of Actemra, solumedrol and Methotrexate.  Met with new physician, he was very kind and shared his thoughts of where Jake & Hannah might be heading.....  Discussed possibly adding another biologic to the current meds. He gave us two choices and wanted us to think about it as we pursue joint injections and wait for MRI results.  Today- he wanted to do multiple joint injections based on inflammation in Jake & Hannah's joints. He is wanting to do both kids wrists, ankles and knees.  We agreed to consider on Friday based on amount of inflammation. But we choose not to tell kids all week- they were already anxious about wrists injections.

Bobby went back to work- Kids and I stayed in Gainesville for the week.  We tried to do a little bit of fun and school work while recouping and waiting for Friday's appointments. We went to Natural Science Museum, Butterfly Garden, and Build-A Bear. Jake & Hannah both bottomed out very quickly and our outings were short. Jake was very nauseous, had absolutely no appetite all week and was not feeling well at all. I always try to figure out, WHY? I am thinking he had his methotrexate within 5 days of last dose and it may have made it sooo yuky! The highlight of the week was Build-A-Bear. We were able to get a port from hospital and make our own bear friend with her own port! The sales associate, Michelle,  was so nice and also has a friend who suffers from JRA. So we spent most of our time in hotel, snuggled up with our bears!

Friday has arrived- MRI's with sedation and joint injections should be no biggie!! Bobby has come back to Gainesville to be with us.

Hannah again was selected by staff to be the first to start MRI's. She was getting MRI of neck/spine/wrist and hand. All was good- UNTIL the anesthesiologist gave Hannah versed! Hannah immediately became relaxed and out in my arms. Carried her to the bed with Bobby and Jake following. Within seconds, Hannah began crying, thrashing around on the bed. The team began to watch her closely and added more meds through her port.They asked us to say bye and they'll get her settled.  I was giving her a kiss- and Jake was feeling like he was going to throw up. He made it to a chair and told Bobby he was dizzy and couldn't see. I walked into the room to catch Jake from falling out of chair. Yes- he passed out cold!  So there we are--- on the floor in the MRI room and Hannah a few feet away..."reacting" to her anesthesia meds! The anesthesiologist later came by to apologize and check on Jake. (He said he wasn't expecting her to respond that way.) Jake was scared when he came around. he told us that he was blind and he couldn't see it all. As he  layed down in a hospital bed and rested, tears began to flow..... He didn't want to be put asleep like Hannah and he was scared.  He also shared with us that "he went to heaven just for a bit." We assured him, he didn't go to Heaven and that is how it feels to pass out! And...most of all, he is going to be ok! He was full of questions- so we then had to explain that Hannah  reacts differently to anesthesia meds, and he will be perfectly fine!

Jake had tears rolling down his face, his face got red spots and before we knew it.....He was asleep and wheeled off for his jaw MRI. Bobby and I were escorted into the waiting room.......waiting for Jake & Hannah to finish their MRI's. Somehow-- joint injections were suppose to be coordinated while kids were still under sedation.  The rheumatolist and 2 nurses came passing by with their bucket of sterile goodies and shots! We were able to be present for Jake & Hannah's injections! Inflammation was down today- so Jake got both wrists injected and Hannah got both wrists and right knee injected. Joint injections were a first for us!! WOW-- didnt prepare myself to see kids JUMP and react even while under sedation! The team was great, very thorough and left us with Toradol script for both kids for 5 days.

Jake woke up pleasant, but in wrist pain. Hannah did not awaken pleasant and was totally out of control, AGAIN! Here we all are in the small MRI recovery room. I warned nurses and anesthesiologist....but they got to see it all first hand! A few nurses were patient, a few tried to calm her down and my husband simply thought I should be able to control her! Needless to wasn't a pleasant experience.  Jake was starved and had enough of her screaming, crying and kicking! So much for not using the injected joints......they were thrashing non-stop and hitting bed rails! I knew Hannah was not really there yet! Her speech was slurred, eyes not focused and talking about silly things here & there! I knew Bobby was embarrassed......I needed more time and she'd snap out of it!  Before I lost my mind.....Hannah came around and was pleasant as can be but in a lot of pain! We loaded the kids up and got pain meds filled as quickly as we could. Pharmacist I was reluctant to fill RX because of a counteraction with Methotrexate.  He called into Shands, but no return calls on a late Friday afternoon.  Finally, he gave us the toradol but made sure we understood the possibilities and to go to the emergency room if any symptoms occur.  Toradol  taken every 6 were hurting indeed!

Saturday- a new day! YEA!! Ports were no longer assessed and on their way to complete recovery! Injection sites were much less painful and we were headed back to home, sweet home! Happy to have this week DONE! It's a learning curve- and I will definitely schedule Jake and Hannah on separate days anytime Hannah has to have sedation! I am really hoping Hannah does not need any type of sedation  for awhile!  Now we await for MRI results, wait to see if joint injections will help decrease inflammation/pain in wrists and Hannah's right knee. Jake has his appointment in December7 for oral/facial surgery for jaw injections. And.....we're pondering around the thought of adding another biologic medication to the mix of current medications!

Thank you for those of you who follow The Sloan Siblings on their JRA Journey. It's a ongoing journey, always things a happening and always wondering "why". It simply never ends.... Hannah has now build up Methotrexate and she gets to deal  with severe nauseous/headaches/poor appetite and vomiting days after her weekly chemo med(.methotrexate). Zofran only helps so much- it's just heartbreaking to see her loose her spunk!  Jake continues to have his days were he simply isn't doing well , hurts all over and is a challenge to even eat! Jake's fevers were fewer for the first several weeks of starting Actemra- but they are back to several days a week, if not daily.  I am so proud of Jake and Hannah that they are capable of putting a smile on and not let this disease get to the best of them!   They both have huge hearts, eager to learn and love life itself! We don't know what the afternoon has for us or where this journey will lead us, but we try to remain positive despite the obstacles our family deals with everyday! Thank you for those of you who have kept us in your prayers, checked in on us and show our family support. You know who you are- and THANK YOU!  Our family strives to live life to the fullest and know better days to come! Right now, we are counting the days until we make our first road trip to Sparta, TN.

Thursday, October 13, 2011

Sloan Siblings are getting prepared for PORT....Hoping for more positive expereinces in the infusion rooms! No Taco's- please!

 Fourteen days flew by so quickly.....we were back on the country roads heading to Shands for another round of infusions.  Hannah had another day at Shands that she considers one of her worse days ever. She even told me that she can't wait for "eternal life". I ask her why, Hannah says" because I will be pain free and no more needles"! So today the nurses were not able to find a good vein and searched for a very long time, recruiting other nurses opinions as to where they should attempt. Hannah got so incredibly upset after the first attempt failed. She made up her mind that she was not going to sit still or give them a arm at her will. We gave her a few minutes to calm down as I then switch over to Jake's chair to help him get his IV's started. He was unsuccessful first attempt, too. As the nurse digs and pokes around at another vein on Jake, Hannah is able to get the words out," Mommy, please take me home".  There was no other place that I'd rather be than home. I knew what was going to happen next....... The nurses got Jake's IV's flowing and then I carried Hannah out of the infusion room to a private room where she was made a "TACO". Blankets were wrapped tightly around Hannah's body expect for her one arm where the IV would be inserted. Three nurses, child life specialist and Mom held Hannah down as TIGHTLY as we could until her IV was inserted. She screamed so loudly and was hysterical! My heart broke because she begged me over and over again, "Please mommy, take me home".  When we got back into the infusion room, Hannah was exhausted and worn out! Bravery was not there today for Hannah!

Jake is my Super Star!
Hannah is NOT feeling up to infusions today!
Dr. E  and the entire 4th floor heard Hannah! Dr. E could tell by looking at Hannah that she isn't feeling well. Unfortunately, we realized that the med orders didn't get picked up and Hannah didn't get her Actemra increased today like Jake did! So .... we will wait another 14 days for increase of Actemra. Meanwhile- Dr. E wants to add  Leucouvorin, increase Celebrex, and add Toradol. Dr. E also wanted to add right hand and wrist MRI when Hannah gets her MRI of neck this month. The plan is also to do joint injections in Hannah's wrists when she is sedated for her MRI's. If Hannah didn't like the IV in her wrist, then I am sure she will not be thrilled to have a long needle in her wrists!!  Dr. E also talked to Hannah in great detail about not using a pillow at night. Hannah expressed she can try to use her bear, Precious, to hold her ice pack under her neck, but she couldn't wear her wrist splints and no pillow at night!LOL- hard to convince a little one  that these interventions will possibly help!

We were able to finish IV's and see Dr. E just in time for our surgery consult apt.  We walked in the door knowing it was time for Hannah to explore getting a port. The nurses and md certainly shared with me...It was time! But I had a lot of reservations for Jake, and Jake did not want any part of discussing a port for himself.  The nurse practitioner was so helpful and answered my zillion questions! Jake was relieved that he can still "work" and carry firewood and ride his 4-wheeler, and swim in Dale Hollow Lake. The surgeon was hopeful and felt it was something we needed to do for Jake & Hannah.  No rough playing, no contact sports and I  officially wear another hat! My hat is the Port Police hat! The md strongly stated this was the most important job-- be sure anyone who touches my kids port has experience and is not sick and using nothing but the BEST sterile procedures to help reduce infections! So..... October 24 at 7am.....Jake and Hannah will BOTH be getting a port placed.  We hope the port will be on upper left chest area- but we won't know until the port is placed and Jake and Hannah are out of recovery!  Jake & Hannah will go straight to the infusion room to get their infusions with their NEW PORTS on this same date!!

Hannah crashes in bathtub after getting home from a VERY long day!
Meanwhile- we keep going everyday! On a positive note- Jake and Hannah both had their first body massage. They loved it and we will definitely be scheduling more in the future.  Waiting for Shands to call and schedule the remaining appointments for Jake and Hannah. Looks like October is a busy month for the Sloan Siblings!  Jake will be getting a MRI of his jaw and joint injections of his wrist and ankles. Hannah getting MRI of her neck, right wrist and right hand and wrist injections, too.  It is so CRAZY that Jake and Hannah are so similar in so many ways! Even their sed rates are almost always the same! We will also be getting a different Hospital Homebound teacher who is able to come during the days. A little anxious about a new teacher- Ms. Nancy understood so much and I never had to explain a thing! I will still say it is very difficult to explain to others from the outside who are trying to look in. I am so PROUD of Jake and Hannah for putting a smile on and doing their best and keep going! What people don't simply heartbreaking!Hannah has been feeling rotten lately, Jake has lost 2 pounds in past 2 weeks and has had severe abdominal pain and doesn't feel the greatest either! This disease is very draining and frustrating! What I'd do to have an opportunity to have 2 healthy kids! Praying we made the right decisions...... and hoping to reduce pain and get this disease a tad bit more under control! Jake and Hannah are truly my HEROES!

Wednesday, September 28, 2011

Decisions...Decisions....And More Decisions

I don't know if any one of us parents were actually prepared to make so many decisions for our children. We are all faced with making tough decisions that affect our children, not only immediately but years to come, too.  Raising two young children both living with chronic illness puts Bobby and I in a position we are constantly making HUGE decisions for our children.  We take our challenges to God and I most always follow my heart, but sometimes I am lost as to what to try  next! Why can't I just take all this crap away from my precious kids and live life??

Today was one of those days where I just wanted to cry! Hannah describes her day as "her worse day ever." It wasn't her worse, but not a easy day for her when she woke up feeling horrible and it only got worse. It wasn't  fun holding down a screaming, crying, kicking 7 year old with the help of 4 medical staff as we try and try and try to get a IV line started to pump these NASTY drugs in her body which are NOT helping controlling her disease.  It tears at your heart when your child is screaming for help and begging "MOMMY, please help me, get me out of here and don't let them hurt me".  I tried to hold back my tears as our favorite nurses do everything they can to get a IV started! Finally after 3 attempts-- We got it!  Hannah was MAD at everyone, including her own Mom! She was upset, and simply not wanting to be at Shands today. She  took awhile to calm down and accept she was hooked up to a pole, next to her brother who was also hooked up to a IV and we could NOT leave until all meds were finished! Thank goodness a young college volunteer was brave enough to sit with Hannah and watch a movie together!

No Chemo shortage for Jake!
Dr. M made her rounds to the Sloan Siblings. Jake was disappointed- he was hoping that his mouth sores and national shortage of Methotrexate would maybe give him a break and he can stop it for a bit! He woke up today and said, "yes, I have 4 mouth sores and the doctor can see for themselves that I can't take Methotrexate anymore". I didn't dare tell him that there wasn't a chance he'd be taken off the chemo drug that causes so many issues but possibly helps the disease???  Six infusions of the new and only approved drug (Actemra) for Systemic JRA and we are not seeing the results expected. In two weeks- we'll be increasing the dosage and hope to see better results! Joint injections were discussed again today.  Shands new Pediatric Rheumatologist does the joint injections at clinic but with no sedation.  How do I convince Jake that injecting wrists is a cool thing and this will work! I got so lost in the conversation today, I may heard injecting ankles, too? I knew his ankles were one of the hot spots, but she said they are becoming just like his wrists!! LOVELY---  flexion is limited! (My boy needs to be able to pull that trigger on his shot gun and run home with his turkey on his back! LOL)  He has figured it out.......NOTHING has worked so far! Jake has almost stopped talking about his daily pain and the hopes of a new drug working! I am actually proud of him- he has accepted a lot for such a young man! Good news- Dr. M believes she found a oral facial surgeon in Orlando area who can inject Jake's jaws.  We have been searching and searching for someone in Fl for atleast a year! Jaws are a big concern and Dr. wants to do a MRI of jaws and inject the jaws. I say that is good news...... not really but what is good about all of this?? Thank goodness we didn't discuss GI issues today. I don't think I am up to scoping Jake just yet! It has been mentioned, but he has had fewer episodes of throwing up and diarrhea  in the past month!

Hannah's biggest complaint is her neck.  What do you do for a neck? Yes- therapy would be lovely non-pharmaceutical start but insurance only approves 60 days of therapy.  Didn't you know that PT and OT can provide therapy and 60 days magic happens for our JRA kids! NOT!!!! So frustrating--- and  Shands has requested for additional visits, DENIED!!  Md is scheduling Hannah for a MRI of her neck with sedation.  During this sedation period- we're going to coordinate joint injections in Hannah's wrists. She has already warned me, "nobody is touching my wrists again with a needle".  Hannah needs some relief in her fingers and wrists, so we made the decision to try another approach directly into the troubled wrist joints. So we'll be taking a closer look at her neck, injecting her wrists and increasing Actemra. 

The day has come.....we are making the decision of  inserting a foreign titanium object into my kids body which may cause infections and at risk for much more while giving them a break of needle pokes and re-pokes at least every 14 days!  Adults that have had ports quickly say, "Yes, do it".  But for our children it is much more complicated.  This journey does not have an expiration date, we won't hear the bell ring after 6-12 months of treatment. There won't be a celebration party , ports removed and a thing of the past!   If we choose to have a port surgically implanted under their skin directly into their central veins, it will be for the long haul. Which also means Jake & Hannah will outgrow their port and need it removed and another one replaced so it won't get displaced and cut off circulation in affected tissue.  It can be dangerous due to high risk of infections and even blood clots can be common problem.  It breaks my heart to make the decision for Jake & Hannah: No contact sports, no rough playing, no blows whatsoever to the chest area! I am once again taking away and robbing my kids from a childhood they so deserve, too!  Then the nurse quickly reminded me, no 4-wheeling for Jake.  I said, "what, he isn't going to stay off his 4-wheeler". Purchasing a chest protector is a option for Jake to wear. Yes- won't he be thrilled to hear mom remind him, "put your knee splints on, wrist splints and your chest protector".  I can almost feel in my heart its the right thing to do for Hannah, but then how do I justify for Jake?  I was told if they get any fevers then they must be taken to hospital and blood cultures drawn as the basic protocol.  I laughed......Jake gets fevers several evenings a week as it is right now!  Where's my magic wand? I do take all my worries and concerns and needs to God, but it still is not a easy decision!!

On a positive note, I followed my heart and am thrilled to have Jake & Hannah attend Sloan Siblings Academy.  (Also known as, Hospital Homebound program.) Kids are thrilled to be home schooled and love it!! Homeschooling isn't for everyone , but it seems to be exactly what we needed this year! I'll blog soon and share my zillion reasons why I love homeschooling my children.

Our new stomping grounds.....
A day at the Sloan Siblings Academy.
And......our most exciting news!!!! We have decided to fulfill our family's dream.  We will be moving to Sparta, TN and raising our children in the country! If you know me well, or my husband and children, we all love the outdoors, animals and TN.  Our dream is going to come true...... Next month, we'll spend some time getting to know our new 33 acres and getting antiquated to Sparta before we move. Had hoped to meet our future  Rheumatologist  and be able to get infusions up there over the Thanksgiving break. Not sure if that can happen- insurance dictates so much!! ugh .... Every 14 days for infusions fly by quickly- we may have to settle for Enbrel shots while we are in TN. But the thought of adding another imuno-suppressant on top of another..... Yikes!  We won't be moving anytime real soon, but we made the decision to be closer to Grandparents and live in the country!  I look forward to sharing TN  story's  with you oneday....... I hope the good, clean country air will wash Mr. Aurthur out of my children's bodies and all these drugs are not necessary to survive! We are really excited to make a change and focus on some new interests. Bobby is looking forward to spending time with his family and being a retiree!

Hannah was wiped out, a long day!
Our family & friends who have been there for us, THANK YOU! This disease is invisible and very difficult to explain to others so you can even begin to understand a piece of our everyday life.  But those of you who have loved my children and prayed for our family, thank you & please don't stop the prayers! The Sloan Siblings journey isn't over, there has not been a bell heard and they will most likely never hear that bell ring! So we will always count on your support and prayers to get us through each day! And today was a long day!

Jake is just a grinning....focusing on TN!

Saturday, August 20, 2011

The Sloan Sibling's Summer Buzz

Jake & Hannah at Camp Boggy Creek
We started our summer off by celebrating Hannah's 7th birthday.  By her turning 7 meant that she was eligible to be a camper at Camp Boggy Creek.  Needless to say- Hannah's bags were packed and she was ready for a week at Camp Boggy.  Walking away from Jake and Hannah at camp in the care of complete strangers was one of the hardest things I have done.  Even the best of the best nurses and Ped. Rheumatologists at camp, it was not ME! Neither of the kids had been feeling well days prior to camp, so naturally I was worried.  I reminded myself everyday that Camp Boggy Creek was designed  for chronically ill children and  to provide a experience for the kids to forget what they have and simply be a kid. I wanted that more than anything- so I survived a week without Jake and Hannah.   I was anxious to pick up my darlings and they were WORN OUT, but had the time of their lives! They can't wait to do it again next summer and hope our entire family will be back in September for Family JA Weekend.
Hannah & Jake both getting 1st dose of Actemra
In between camp and a week at the beach, Jake and Hannah started their  first treatment of Actemra- the first biologic approved for systemic JA.   It is always stressful switching medications and wondering if this is the right decision.  It's easy to feel discouraged, but we strive to remain positive and hope Actemra is the medication to help Jake and Hannah fight this battle!   Following infusion day, we repacked our bags and flew out to Washington DC for the annual JA Conference.  The Florida Chapter Arthritis Foundation had sent 12 families to this conference.  It is always such an amazing experience to be surrounded by 1,000+ people who all "get it". I spent several days listening carefully to presenters from across the US to share the very latest in treatments of JRA, sharing my story with others, and consulting with a few of the best pediatric rheumatologists in the country.  I feel assured that we are doing everything we can to help Jake and Hannah slow down the progression of this disease.  I like to know what's ahead and be prepared for the next steps.   I am concerned and scared that there is NOT anything past Actemra.  Our option will be to be part of a clinical study.  (I'm not sure how I feel about letting my children being the ones to test it out..... We'll cross that bridge when we get there.)
Even more reasons why we all need to speak to our local Congressman and let them know arthritis is not ok! We can't possibly accept that it's ok to cut research dollars which will result in  fewer opportunities for new biologic medications. I don't want to let go of my dream....FINDING A CURE for ARTHRITIS!  Spending those few days in Washington DC was the BEST! Jake and Hannah were able to reconnect with JRA buddies and be assured that are not alone with living with JRA.  Hannah asked me almost everyday, Mommy, why are our JRA friends like our best friends?"
Family Night at JA Conference in Washington DC      
Jake and Hannah's favorite part of summer was spending a month with Grandma and Grandpa in TN.  I don't know if it was the 4-wheelers, good country air or the love from Grandparents, but I almost began to wonder why we are going to Shands every 14 days for infusions??  Jake did amazing in TN and it really gave us  hope that Actemra may just be what he needed for some much needed relief! Hannah did not feel as well as Jake, but being pampered from Mommy and Grandma wasn't so bad either! 

I feel like we just got home and summer is over. Our family is ready to begin our newest adventure--- Homeschooling. For MANY reasons, we have decided to try something new in hopes it will be better for Jake and Hannah.  They are both super excited and don't have any reservations about missing happenings at LCS. The flexibility and being able to work around medical appointments, infusions (every 14 days),  flare up's and illnesses is just one of the advantages of homeschooling.  We are beyond fortunate to have been placed with the most amazing Hospital Homebound teacher, Miss Nancy.  I will NEVER have to explain anything, she has lived with arthritis as a young child herself and battled the disease as well as lymphoma several times.  She understands being nauseous a few days after Methotrexate shots, and the hyper moods after bursts of steroids,  the lack of concentration during a flare and the sudden fevers and quick illness onsets.   I am looking forward to this new Homeschool adventure and praying Jake and Hannah will benefit from the Hospital Homebound program.

The Sloan Siblings Raising their Hands Against Arthritis!

Saturday, June 18, 2011

New Drug & New HOPE for the Sloan Siblings

  Finally.... the day has come where FDA has approved the first therapy for children with Systemic Juvenile Rheumatoid Arthritis.  April 20, 2011, The U.S. Food and Drug Administration  has approved the NEW biologic drug- Actemra or tocilizumab.   Actemra's approval for this drug comes after a study of  only 112 Systemic JRA children between ages 2 and 17. Eighty five percent of those children  who got Actemra had at least 30 percent improvement. It may not sound too exciting, but as a parent who now has TWO children who have Systemic JRA-- It is better news to know there is possibly HOPE!

I often struggle with to share or not to share our JRA journey.  I'd like to put make up on, get dolled up and walk out the door like "Life is Good".  But for the Sloan family that is far from the truth. Although, Jake and Hannah may look  great and may certainly not act sick........ Let me say simply..we have MANY stories behind those smiles!  The stories are what I choose to keep personal for the most part.  Do you really want to know my husband came home this week , unable to talk and was gagging until he threw up. Yes- the news that our son, Jake , is also SYSTEMIC just like our daughter, Hannah.  And that we are now going to TRY another NEW drug that only 112 children tried! 

Trying to get excited about the opportunity for  Jake and Hannah to both get their first Actemra infusion on July 5, 2011. Actemra is the first drug to block the inflammatory cytokine IL-6 or interleukin-6, which also plays a key role in driving the inflammatory process. It is administered as an infusion- every 14 days and preferably in combination with Methotrexate.  Jake is currently taking Methotrexate , but we choose to discontinue it for Hannah about 2 years ago. ( Hannah was unable to tolerate it regardless of how much we lowered the dosages, added leucouorin and Zofran, ect....)  So the thought of Hannah & Jake both on MTX ...  let's just say it literally makes me sick!  Side affects of Actemra appear to be very similar with the current Biologic's that Jake and Hannah have been taking ( Enbrel, Remicade, Oriencia). I guess we can deal with extra colds, upper respiratory infections, headaches, sore throat, congestion, and diarrhea.  But what I  HOPE does not occur is the potentially deadly condition known as MAS (macrophage Activation Syndrome).  MAS is a complication of systemic inflammatory disorders in children like Jake & Hannah that involves overactive immune cells  and can lead to "trouble" very quickly! This is always my fear when Hannah gets sick, and now my new worries for Jake. MAS worries me more than the increased cancer risks! Always HOPING & PRAYING for the BEST as we make decisions for Jake & Hannah! 

Monday- I am sending Jake & Hannah to Camp Boggy for 6 days in hopes they will have the opportunity to "forget what they have and feel normal."  They are so excited to go away and be surrounded by kids who all understand and can relate to life- the Sloan Siblings Life! I trust the staff and medical volunteers to take care of my children and all the others who also suffer from JRA.  When they return-- we will take the next step at the Swamp and start our initial Actemra infusion. With HOPE this new drug may be answers to some relief for Jake & Hannah. Then we will re pack our bags to fly out to Washington DC for the JA Conference.
Hannah & Jake
Bobby and I are holding on to HOPE that Actemra may help Jake & Hannah.  We appreciate those families and individuals who are continually praying for our children and family.

Thursday, June 9, 2011

Sloan Siblings Stomping Out JRA!

 Sloan Siblings 2011 Team

The past few months were long, busy days as we prepared for Lakeland's arthritis walk.  But as May 7 came-- it was worth every effort we each put into the 2011 "Let's Move Together Arthritis Walk".  I am so proud of Jake & Hannah for helping to recruit friends from school, church, dance classes and family.  The Sloan Siblings team was the largest team and raised over $7,000.  A special Thanks to Law Offices of Burnetti, P.A. and The Sports Section for sponsoring Jake and Hannah and providing all our team walkers with shirts.  It was incredible to look around and see all the yellow shirts supporting the "Sloan Siblings". It was one of Jake and Hannah's best days! Our family was humbled at the support that was given to Jake and Hannah.

Arthritis has not only affected our family, but has also affected 46 million Americans, including 300,000 children. Arthritis is the #1 leading cause of disability in the USA.   Did you know that 1 in 3 Floridians are living with at least 1 of the 100 types of arthritis, and it is life-threatening in many cases?  The generous donations made by family and friends will be used to help further the mission of the Arthritis Foundation which is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases.  Eighty three percent of every dollar goes directly into research.  Without the support from family and friends- we would not be able to hold on to hope that better treatment options will be available for adults and children suffering from arthritis and related auto-immune diseases.

It was my pleasure to serve as Lakeland's walk chair and work under the leadership of Tony Ward- Community Development Director of Central Florida. I am most proud of our Lakeland walk committee. Each and every person contributed in some way or another. It is difficult to do the extra things when we are struggling to take care of ourselves or children who have chronic health conditions as well. But the Lakeland walk committee did it!! We pulled together and it was the BEST walk ever!! Each committee member  touched my heart and with their support made 2011 Arthritis Walk successful in Lakeland, Fl.

Friday, April 22, 2011

Family Connections wth JRA? No- I didn't know I'd be raising two children with JRA!

1.2% chance siblings can both have JRA!
This is going to be one of those blogs that I am actually venting and sharing a few facts I was able to put my hands on recently. For those of you who know me personally, I am not a chronic complainer and try my best to stay positive.  Everyday is a struggle in some way or another raising two kids with chronic disease like Juvenile Rheumatoid Arthritis (JRA)  and living with it myself.   But when somebody asks me "why did you have children knowing they'd have JRA" or " it's a genetic disease and runs in the family". It really bothers me and hard to let go of those ignorant comments.  So this blog is just for me to be able to type out the facts I found and to justify I did not have children knowing my kids would have JRA.

Sloan Siblings both living with JRA!
When I meet someone new who learns Jake and Hannah both have Juvenile Rheumatoid Arthtritis. I expect the typical response, "didn't know kids can get arthritis" and "but they look so healthy".  Now that Jake and Hannah both wear splints everyday- there is  a visual cue for others that something is there?? Seems like we are explaining  more and more to strangers everyday that Jake & Hannah both have JRA.  Many people ask if anyone else in the family has arthritis, too?  I cringe and casually say "yes".  Several people have gone the next step and asked who in the family, so I have to share my mom and myself.  Then.... these same people automatically assume JRA is a genetic disease and it was a given my kids would have JRA.  This really upsets me....... NEVER in my life did I dream I'd be raising two kids both with JRA (Polyarticular and Systemic JRA).  It wasn't a choice Jake and Hannah had and it certainly wasn't a great risk of me having children with JRA. I have accepted it was simply God's plan for me.... Why? I don't understand that yet- but trust it was His plan despite what my chances were of having two children with JRA.

Here's what I found in a recent article from Kids Get Arthritis, Too,Volume 10,  2010 issue.  An article Linda Brown wrote on JRA: All in the Family?  We already know that there is 300,000 children with JRA.  That is one in 1,000 children under the age 16 has JRA.  A new study was done by Dr. Prahalad showed that there is a 1.2 percent greater risk of a sibling getting JRA  (when there is already one child in family with JRA).  "So there is a 98 percent chance that the family would  NOT have another child with arthritis."    As for our family, Hannah wasn't diagnosed until she was 2 1/2 years old and she was our second child.  NOBODY wanted to believe me that Jake had arthritis, too!  Yes -I was told..."No, you can't have two kids with JRA".  Well, maybe Bobby and I should have played the lottery because we have two kids with JRA.  We were not fortunate to fit  into the 98 percent who would not have another child with any type of arthritis.  
First Cousins..... Dr. Prahalad found the risk drops to six times greater than the general population.       (That would be about 1/2 percent chance that 2 first cousins would have JRA).  I'd like to say this should not be of any concern for parents and adults who are considering having children with auto-immune diseases like arthritis in their immediate family. But we are living proof- it can happen and did happen to The Sloan Family! Many parents who have a child with JRA ask me what I think about them having another child and they worry will they have another child with JRA?  Here is what researchers know as of today-- 98 percent chance that you won't have another child with arthritis! All I can say is thank goodness Bobby and I got my girl and we stopped at 2 children!! Don't think we could afford any more medical costs and mental status of me would be a scary thought!
Jake & Hannah both getting infusions at Shands Hospital.
Something we all have shared together.... SHOTS!
The article also shared that if you were found to be one of the few siblings to have JRA- that the age they develop the disease tends to be similar.  He also found if you have two siblings in a family with JRA, they more often have the same subtype of arthritis than different kinds.  I can't stand the thought that Jake complained & complained as a young child about joints hurting, asked to pray for his achy joints EVERY night and thought he hurt like his Grandpa and sister for a very, very, very long time! So I can't really say what age it all started for Jake? His diagnosis was delayed...... maybe this is why we are having a hard time controlling the disease?? EARLY AGGRESSIVE TREATMENT is the way to treat this monster disease! Unfortunately, Jake didn't have that chance because NOBODY wanted to believe me and him that he was hurting and really did have arthritis like his baby sister, mom and Grandma!

One of the things that bother me the most is..... will Jake and Hannah be able to have a family themselves due to all these many years of heavy drugs that I choose to give them and will their kids also inherit JRA??   There has not been any studies on JRA kids having children of their own inheriting  JRA.  At this point researchers know more of sibling pairs than parent-child pairs with JRA.  Like I said, I should of played the lottery! What were my chances of me having JRA just like my mom and then having a child with JRA, then another child with JRA??  So for those people who are inconsiderate..... I did not choose to have a family knowing they'd have JRA! 

This is why I am committed  to the Arthritis Foundation and support research. I want to have grandchildren one day and don't want them to have the same life that Jake and Hannah are living everyday!  We need to find a cure and better medications for these  precious children!
  Arthritis is the #1 Disability in our country and is simply Not acceptable!!

Thursday, March 31, 2011

The Sloan Siblings and family visit capitol Hill to share our JRA Journey.

Our family had the opportunity to visit Washington D.C. to meet with members of our Congress to share our JRA journey.  For those of you that know me- it shouldn't surprise you to hear that  the Sloan Family is raising our hands & voices against arthritis.  It was amazing to be surrounded by 312 people representing 47 states , including 80 children who all believed the same thing!                       Arthritis is unacceptable!  

Our first afternoon in D.C. consisted of our family participating in a home town radio interview. Bobby seldom has the chance to be with us and participate in arthritis events- so he shared how arthritis impacts his life and his family's life.   We also attended a new advocate training session that covered information about political and legislative processes. Jake and Hannah attended kid's group where they learned about government and how to advocate for themselves.  Lots of information to take back to the hotel room and prepare for our U.S. Senate appointments the next afternoon.

The "Sloan Siblings" ready to share their story!
Bright and early we begin our second day with Chrsitophrer Kush of Soapbox Consulting, leading an interactive training session to help us conduct successful meetings with our Senators, Representatives and their staff.  Within a few hours, we were ready to take the metro (subway) to Capitol Hill to share our story.  Our first appointment was with Senator Bill Nelson with his legislative correspondent, Gene Schlesinger.  It was great to have the opportunity to share our story and to tell them publicly what we need!  I wasn't able to hold back the tears. It was a lot harder to share our story than I thought it would be! Gene listened closely as our family expressed concerns about pain, disability and cost of arthritis is unacceptable!I shared our personal story as I have had JRA since 3 years old and then to raise both of our children with JRA is beyond difficult.  Bobby was there by my side when I couldn't choke out any more words- he moved on the business side of the meeting asking for just a few simple things from our government. Overall it went well and I am confident that Gene learned something about JRA today.

Our second appointment was with Senator Marco Rubio with Sally Canfield, the legislative director.  She was such a delightful lady!  Jake and Hannah both talked with her as she asked them many questions about living with JRA.  Jake told her that friends make fun of him for wearing his splints and that he hates having arthritis. We kindly asked for consideration of the following:
1) Join the Congressional arthritis caucus
2) Make arthritis a national priority and send President Obama a letter
3) Continue to fund  arthritis research through the NIH
4) Put arthritis on the list of diseases researched through the Congressional directed medical research program.

Another busy day ahead for the Sloan Family on Capitol Hill. We had three appointments with House of Representatives, Rep. C.W. Young, Rep. Dennis Ross and Rep. Ted Deutch.   Unfortunately, Jake woke up today not feeling well.  It was a long busy day of walking the halls on capitol Hill, but we continued to do so and had another day of successful meetings.   Jake and Hannah did amazing, too! I was so proud of Jake for speaking out and telling Congress exactly how he feels.  At one meeting- someone said, "it must be hard to have days when you don't feel well'. Jake replied, "I don't remember when I had a good day". 
The Sloan Family with Rep. Dennis Ross.

We get back on the plane and have a few quite moments to reflect our trip to Washington D.C.  I would do it again and again and again! Our government officials that we elect are going to continue to hear from The Sloan Family.  My children are counting on me to be their voice and attempt to find better medications and most of all to continue research to find a cure.   Thank you Arthritis Foundation for trusting our family to be the voices from Florida and the 50 million Americans who suffer from Arthritis everyday of their lives!

I encourage you to become an Advocate, if you are not already an advocate through the Arthritis Foundation.  Wouldn't it be nice to be able to take a pill form of a biologic drug?  We need our government to continue to fund research through NIH and help us get a few steps closer to this new biologic pill, rather than infusions and shots.  I need to know is there really a genetic link with arthritis? Most importantly, how can we prevent Jake and Hannah's children from also having JRA? Why do 12 of our states not have any pediatric rheumatologists to treat children with JRA? Arthritis is unacceptable to me and we need the government to make arthritis a national priority, too!

President Jake Sloan
Future First lady..Maybe??

Friday, March 11, 2011

Rotavirus Hits The Sloan Siblings......

The day started off perfectly! We were headed to Orlando for our " JRA Family Picnic".  Jake and Hannah were excited to see their friends and meet a few new friends who also have JRA.  We could not have asked for a better day, weather was perfect, good food,and great company.  CamoKids team was recognized with trophies for raising more than $10,000 in 2010 Arthritis Walk.   Several hours passed as all of us mom's and dad's sat along the benches talking away while our kids played and shared similar stories to each other.  After a few hours, it was time to say good bye and head home.  It was a long hour and 20 minutes home....Hannah fussed and cried almost the entire way home about her tummy hurting.  This is nothing unusual-- her tummy is often a area that is very painful and after increased activity it seems to hurt even more.  

After an hour of being home----- Rotavirus kicked in high gear and didn't stop!  Hannah first had diarrhea and then she talked about her tummy hurting and how it was grumbling loud.  Of course this all had to start at bedtime- everyone is tired and I hadn't even unpacked from our Washington DC trip. Within minutes from her first episode of diarrhea , the vomiting began and continued for 19 hours straight. Poor Hannah threw up every 5-15 minutes throughout the entire night and Sunday morning. She was so sick, weak and exhausted.  Many times she was having diarrhea and throwing up at the same time.  Of course, fever always comes with illness.  When my husband finally got home (worked 24 hours then goes straight to church) I called the pediatrician.  He recommended me taking Hannah to the Emergency Room if it didn't slow down within the next 3-4 hours.  Nothing slowed down and I wasn't able to get any fluids to stay down more than 5 minutes. My husband and I made the decision to go ahead and take her to the emergency room for IV fluids and meds to help her to stop vomiting.  As I was carrying her to the car-- she rolls her eyes back and tells me "she can't move her fingers and they were tight". I looked at them..... I panicked!  I yelled for my husband to come.....neither one of us could open her fingers, they were so contracted and very tightly closed in her palm of  her hands.  Then she opens her eyes and says in a panicked voice, "Mommy, it's happening to my feet and knees, too".  She begs for me to stop it from happening.   I had no idea what was going on...... I thought to myself, did she have a stroke on me?

I couldn't get to the emergency room fast enough.  She was in/out of consciousness in between throwing up on route to the ER.  Luckily, the staff was kind and let us go directly to a room without any wait.  The usual questions are asked, medications discussed and it was obvious I should have been here many hours ago.  Nurses had a difficult time starting a IV to administer  fluids and zofran for nausea.  On a good day, Hannah has bad veins and this is always challenging for nurses to start IV's.  Finally, after several attempts.... IV started to initiate blood draws and get some fluids in her. Rectal swabs needed to properly diagnosis what we now know was rotavirus. (Hannah didn't like this- but who would?)  Meanwhile, the doctor examined Hannah and asked me how I felt about sending her to Shands for hospital admission??  I assured her LRMC  will be able to give her fluids and she'll be fine.  Within an hour, the doctor shared with me that she was positive for Rotavirus and needs to be admitted.  By now.....Hannah is finally resting and the vomiting has slowed down. 

I was ok with rotavirus...but wanted answers  as to why did her hands and feet contract up so tightly?? This was something new  and I had never seen his happen to Hannah.  As more tests came back- it looked like her calcium was low and may have caused tetany. Neurologic symptoms can occur in severe cases of rotavirus which results of electrolyte imbalance (i.e., low calcium).   Hannah was given calcium, potassium in her IV as we wait for a bed available in pediatric unit.

As the doctor kept checking on her, she explained more about rotavirus to me.  It was then that I figured that Jake has it, too.  Jake hadn't been feeling well, abdominal cramps, throwing up after some meals and diarrhea. I totally contributed this to his new medications.  I had even researched more about Orencia and figured it was one of those lovely side effects. Jake had his first dose of Orencia about a week and 1/2 ago.  I NEVER thought he had any type of stomach bug or rotavirus.  The guilt kicks in.....and then I look back and feel bad that we walked all over capitol Hill with him complaining about his tummy, came home throwing up and sent him to school the next day. I knew if I kept him at home his teacher or school administration would think I kept him home because he was tired from trip. I find myself constantly evaluating and trying to put pieces together....... Why is it happening? What meds did we change? Is this part of JRA or something else?  This time I was absolutely wrong- had no idea Jake was sick and positive for rotavirus!

The norm to expect from rotavirus is fever and vomiting for 2-3 days, then diarrhea for the next 4-5 days. The virus typically lasts 10 days.  The common treatment is simply to replace fluids and electrolytes.    Dehydration is the biggest concern for the children  without any other medical issues.  For children like Jake and Hannah who have a immunodeficiency, it  may cause persistent infection lasting for weeks to months. This is exactly what Jake and Hannah's pediatrician shared with us-- it can take several weeks before kids are back to themselves, expect decreased appetite.  And what always comes with a common illness..... A JRA fare-up!   There is a rotavirus vaccine, but this is one of the many that Jake and Hannah can NOT have ever because of the medications they both take and because of immunodeficiency diseases. 

Hannah's favorite visitor- her brother, Jake!

Four days  later, Hannah was discharged from hospital.  Happy to return to home, but still not feeling the best! Jake returned to school, per doctor's advice.  We certainly hope we didn't share this virus with any friends at school or especially our JRA  family and friends.  These poor kids have such a suppressed immune system, not as easy to fight a common cold or flu or a virus like this one.  Nobody wants to have rotavirus, I am sure of that!

Hannah was happy to be headed home!