The Latest & Greatest with Sloan Siblings...

So>>> I jumped with my excitement about "dumping methotrexate" and within minutes of posting on Facebook....I received many private messages. Arthritis friends from all over wanted to know if kids were in remission, why did we "dump Methotrexate"?  Neither Jake and Hannah are anything close to remission. I simply needed them to have a break of feeling like CRAP for 2-3 days after EVERY Methotrexate shot EVERY week.  It was already on my notes to ask doctor if we could decrease dosages...but as he explained there isn't much more we can do for mouth/nasal sores but swish water in  mouths and add folic acid daily. Then he noticed Jake is thinning and losing hair. I just said, " I'm ready to  "dump Methotrexate" . This isn't the first time I've dumped MTX. We took Hannah off Methotrexate for about 2 years because she was vomiting week after  week and so sick! We never saw a difference either way- on methotrexate or not.  At least now I don't have to expect headaches, tired, nauseous, vomiting, no appetite and feeling like total crap from a medication! So for those of you are in awhhhh that I did it...... I simply needed a break for Jake and Hannah and entire family. I'm sure kids will be back on it one day, but for now we are celebrating and happy dancing that "methotrexate is dumped" for the time being. I apologize if I got some of you concerned or worried that I'd discontinue a medication without doctor's recommendation.....but they'll be ok and ENJOY the break!

Jake loving his "Wish Spa" from Make A Wish.

Jake's jaw injections were delayed due to surgeon had to cancel due to a personal emergency.  It is now scheduled in 2 weeks- April 30. Jake will also be having 5 teeth extracted at the same time while under anesthesia. We are hoping it will bring Jake relief and improve his jaws and increase his appetite. The surgeon has talked to Jake and I about him needing  jaw surgery as he gets a little older. It would involve them removing one of Jake's ribs and replacing it with his jaw.  The good news is arthritis doesn't seem to attack the new "rib-jaw". But that's down the road.....we are wanting to buy as much time as possible so he can continue to grow.  Surgeon has asked us to keep the aggressive treatment and hoping injections bring relief. Just don't know for how long????

We are still are struggling with Jake's weight. He has not gained any weight in 2 1/2 years but has grown in height. He is getting thinner and thinner and losing muscle mass. We have tried a few simple approaches; shakes, protein pills, extra vitamins and encouraging high calorie, fatty foods. Jake continues to have diarrhea daily and throws up here and there and his appetite is up/ down.We were thrilled Jake's upper/lower scopes were good and only indicated he is lactose intolerant through his GI work up.  Jake has had additional  liver tests after a few liver levels were abnormal. He has been referred to a pediatric endocrinologist at Shands Hospital. We are trying to put our finger on if it's just the disease itself, medications or something else ( liver related). Jake is back in Physical Therapy and aquatics 3x weekly. He was disappointed today to see he has lost 2 lbs. and Mom has gained 5 lbs.  I'm leading by example....food is good! lol

" Happy Hannah"

Hannah...... HOPING her eyes are healthy with no cells. Today, her pediatric rheumatologist noticed her eyes??? She has a appointment in 2 weeks, but am calling in the morning to be seen ASAP.  I DO NOT like the thought of eye involvement!!  We tweaked Hannah's medications slightly today. We increased Celebrex to 100mg 2x daily, added folic acid daily to help with mouth/nasal sores, decreased Enbrel to 1x week, and increased solumedrol- steroids to 500mg.  Ohhhh...and "dumped methotrexate". Hannah got orders to start physical therapy and aquatics. Her knees and wrists/ fingers were warm/swollen today when MD looked at her. He asked if Hannah is dancing? Then, recommended Hannah only dance one class and let it be the least impact on her joint.  NOT-- Hannah has her 'Big Show" in a few weeks and would never quit at this point. I love her spunk....it carries her through most everything.  She so enjoyed dance class last night, but then hopping throughout the house and crying in knee pain afterwards. Pictures show a happy girl.....but she hasn't been felling well lately. Discussed "steroid rages" with physician...... I'm thinking they need to give caregivers and siblings meds to COPE with these rages! My heart breaks for her..... Hannah has a endless heart, but boy O boy there are days I wonder if we both will survive! Hannah was hoping for the past week, we'd come home with a solution or prescription for her mouth sores that HURT badly. Disappointing..... but Mama bear helped by "dumping methotrexate". YEA!!

Nothing crazy going on, just same ole...... Jake and Hannah continue their weekly massages and LOVE them. Am supposed to be pursuing acupuncture.....haven't decided who to try locally?? Horse back riding lessons are FUN and gives kids something special to look forward to at end of each week. Just 3 more weeks until our family is participating in Tampa's Arthritis Walk.  We have not been as involved as previous years.... not having it locally has been different and more challenging for me to recruit sponsors, donors, walkers.  Time has been a issue too-- not enough hours in a day! Homeschooling continues to ROCK!  There is plenty of time to register to walk with our family or make a donation.  EVERY donation gives us HOPE for better medications for kids and HOPE for a CURE! Visit: http://awtampa.kintera.org/myjraheroes.  No matter where you live across the country- there are local Arthritis walks happening in May. Hope there are a few more walkers across the country taking the time to walk and think of these 300,000 children who deal with arthritis everyday and need a CURE! 

Sloan Siblings Receive A Gift of Hope.....

Ten months ago, I opened my mailbox to read a packet from Make-A-Wish Foundation that Jake and Hannah both have been invited to make a special wish..... It was such an emotional experience to read that both of our children are able to make a special wish just for themselves.  Some people think Make-A-Wish is just for children who are terminally ill, but it also includes children who have life threatening chronic illnesses.   Jake and Hannah are receiving a gift of Hope and they so deserve a chance to renew their courage and determination to fight JRA!   For a moment I cried and thought how do I actually have two children who qualified to receive such an amazing dream.

Last June, as I briefly explained "Make A Wish"  to Hannah and Jake and this once in a lifetime opportunity. Hannah thought of only one dream, one wish! It was to take away our dear friend, Jeri's cancer and to heal him.  If  I wasn't crying before...I sure did at this point. I explained to her that this was different...she was able to pick somewhere she always dreamed of going, or wished to have, or be, or meet someone special.  She insisted that her wish was to take away Jeri's cancer.  Hannah and Jake share the infusion room at Shands Hospital  with children who are like themselves and others who have cancer.  These children are all their friends and they understand it more than most adults understand.  So to Hannah she wanted Jeri to be healthy and not have to endure treatments like she does and other children do. Bobby and I had many conversations with Hannah to try to convince her she can be selfish, just this onetime and pick a wish just for herself.

Jake and Hannah had 5 days to think about their wish.  They had been asked to provide the wish granters (Miss Candy and  Mr. Joe)  with at least two wish requests. Jake did  not surprise us with his wishes-- he has always asked us to think about getting a therapy pool. He loved the pool at LRMC and thinks it would be the best thing for he and Hannah to have an opportunity to swim everyday, with heat, jets and current control to continue to build his endurance.  His second wish is a trip to Alaska.  Yes- if you know Jake...you've heard about his plans for Alaska. Hannah on the other hand-- her wish list changes by the minute.  It could possibly be an outdoor play house, a trip to a horse ranch or a vacation at the Amish Farms. She has even talked about a shopping spree, Disney cruise, bedroom makeover and even a horse for TN. The few days passed and Jake and Hannah  shared their final wishes  with the Wish Granters last June.

The months passed, Jerri continued his treatment. We laughed as the months went by and thought Jeri isn't done with his treatment, so wishes can't be delivered.  Our biggest wish came true......Mr. Jeri Gable is cancer free.  Then in early April, we received a call that Hannah's playhouse was being delivered and Jake Wish Spa was to be shipped in Lakeland on the same day.   The pictures below say it all...... 

Our family is beyond appreciative for Jake and Hannah's gift of HOPE! It certainly has been WONDERFUL to have the opportunity for both kids and my husband and self to enjoy the hot, bubbly spa! The waterfalls are a favorite of Hannah's. Jake likes the captain's chair and I simply enjoy every second of it! It has been used at least twice daily and feels great on our bodies! Thank you donors, volunteers and staff at Make A Wish Foundation for giving Jake and Hannah a gift of HOPE.

Don't Stop Believin......

One of those weeks I questioned myself and wondered what has happened to our lives? After almost a 3 hour pediatrician visit- I asked " do we have a choice to dump all these medications".  Then today,  I read a newspaper article about a little 9 year old boy who choose to just be a kid and not endure anymore chemo treatments to fight his cancer. Even though he may have only 6 months left of his life- he choose to be a kid and live life for the remaining 6 months. As I read each of his comments, tears rolled down my face, as  I have heard Jake and Hannah say each one of those things to me.  Hannah has got old enough she is now verbalizing that she hates going to Shands, hates going to all these doctor appointments and is starting to give me a hard time about taking her medications. She begs me to help her neck and back pain to go away - it's driving her crazy! She has finally figured out the direct correlation as to why she feels so sick, headaches, loss of appetite and tired after she gets her weekly dosage of Methotrexate ( chemo drug).  I am really questioning myself-- are we making the right decisions?? We TRY so hard to let our kids be kids and do anything they want.  But their little bodies can only do so much somedays and those days are hard to sit back and watch! Methotrexate day sneaks up so quickly--- by the time she's back to feeling like herself, it's almost Methotrexate day again.

We have been aware of Jake's weight and been concerned about it for quit some time.  However, we celebrate at any opportunity we get---and we are pleased that he is continuing to show growth in his height.  Jake has not gained any weight over the past 2 years despite getting taller. One of his doctors has referred to him as" chronically ill-appearing, thin and has muscle wasting". His chest, wrists, arms, and legs are evident of losing muscle mass.  He believes the active disease is causing the muscle wasting in Jake's body. We are working hard on building muscle and getting some weight on Jake. He's our healthy eater, LOVES all fruits and veggies.  He has never liked cakes, cookies, ice cream or anything sweet! Plus, we recently found out Jake is Lactose Intolerant. So will have to be careful with dairy/lactose products so he doesn't have more diarrhea and vomiting than he already has!  Let's hope Jake adds some weight and mom does NOT join in eating all these extra, high calorie foods.

Our family was able to attend Camp Boggy Creek for Spring JA Family weekend a few weeks ago.  Awhhhh....it is literally the BEST place to escape.  It's a Hole in Wall Camp and there is no place like it. We had an opportunity to meet many new families and connect with others from across Florida.  Everything is so perfect there! One of CBC missions is to allow kids with chronic diseases to forget what they have and be a kid!  We drive away with more determination to help find a cure!

"Riding for Therapy" at TIANVICA Riding Academy

Today,  Jake and Hannah started  "riding for therapy" horseback riding lessons. It was touch and go all day if we were able to make it. Jake had a especially rough day. But by the Grace of God , zofran and a day of rest....... he was feeling LOTS better and thoroughly enjoyed his first riding lessons.  It was incredible to see him smile and glow while sharing with me his first riding instruction. For those of you that know Hannah..... obviously she loved it!  She's the girl who collects frogs & lizards and creates habitats and walks them on leashes. Am so ever grateful for people who have entered our lives in one way or another who truly MAKE A DIFFERENCE in Jake & Hannah's life! Thank you Roger & staff!

Jake's recent hospitalization due to unexplained fevers.

Another week closer to helping Jake in getting relief in his jaws.  Jake HATES his shots- but is  actually looking forward to his jaw injections.  Hoping & praying it brings relief for him. We're kinda in limbo as to his treatment.  There has been discussion about stopping Actemra and going back on a previous Biologic and adding a second biologic and seeing what happens?? It scares me to switch drugs and go backwards just because there isn't anymore options in treating this monster of a disease. Jake is starting to get fevers again and Actemra may be loosing it's effectiveness ??  Jake had a recent hospitalization at St. Joseph's Children's Hospital due to unexplained fevers this month.   Thankfully, port infection was ruled out and he didn't have any virus or infection.  Assuming it's just his SoJA flaring- CRP was elevated, ect...

I go to bed tonight trusting in Him and remembering this sign at Camp Boggy Creek......
 Don't Stop Believin.   
Our family has so much to be thankful for, but it doesn't make it any easier to watch your kids in pain and feeling so horrible day after day! I am a bit overwhelmed with so many things weighing on my heart, and with  the new year brings......MEDICAL BILLS galore!! Within a few days, Jake and Hannah are going to be presented with an amazing gift of HOPE! Simply because you may NOT understand the disease or visually see the pain and effectiveness of the disease with your limited exposure to Jake and Hannah-- certainly doesn't diminish the severity of SoJA. Thank you for those of you who have impacted my children's life and brought a smile and HOPE! And even you, Patrice..... Jake & Hannah really enjoy their massages and you are such a important person in their little lives! We won't give up HOPE, We won't Stop Believin!

Sloan Siblings ...... My Heroes!

What you don't see. Han dropping to floor, crying in neck pain.

The Sloan Siblings continue to keep going everyday, put on a smile and pretend all is ok. We work so HARD to continue to carry a positive attitude and not be chronic complainers and be thankful for where we are in this journey. We don't have to look very far to understand things can be worse, much worse. But it still doesn't make our everyday struggles, simple or easy days. Then to have people in our life who simply don't get it at all, not even a tad bit!  And even go as far as question Jake and Hannah and mom's mental status ( Munchhausen syndrome). This is what is heartbreaking and so FRUSTRATING!  My kids are so much like me- why complain and moan and groan?? Who really cares and wants to hear about it constantly? We understand and appreciate people don't particularly want to hear about our day to day battles this disease has taken a toll on each of us,  BUT please keep your ignorant comments to yourself or ask questions to better understand Jake and Hannah's day to day life living with chronic auto-immune disease.
( ok so I can't seem to let  it roll as easily as I had hoped.  I will though.....)

 
 Jake and Hannah continue to be Home-schooled through Polk County Schools with the Hospital Homebound Program. This is our first year in our public schools and a definite learning curve for us. We have a teacher who comes to the house twice a week for 1:1 instruction and leaves assignments in between visits.We supplement materials/  home school groups to assure our children our challenged and not learning at a slower rate because they aren't in a traditional classroom.  We  have no regrets and have no intention to change our academic program for Jake and Hannah.  It is the perfect fit for Jake and Hannah and has proven to be a much healthier year for the Sloan Siblings.  I truly enjoy my time with the kids and every time they throw up, get sudden  fever, diarrhea  or hyper after steroids treatment, or having a bad day....I am so Thankful Jake and Hannah  are in their own home and we work around these obstacles. We move around the house/ furniture to do daily lessons, take hot baths in between, para-fan wax treatments for breaks and keep those heated blankets hot!  We still don't have enough time to do the things we want to do.  Our many out of town medical appointments seem to have to take priority week after week!  After many months, academic testing, home observation visits, evaluations and physician orders written several times....we finally have a IEP  ( orthopedic impaired and Hospital Homebound) for Jake and Hannah. It's just a piece of paper that was a lot of work for some, but for us it's a legal document that protects my children if we ever need to utilize it.   Halleluiah....IEP is done! 

  I am so proud of Jake and Hannah.  Jake has truly accepted his disease and knows he'll never be pain free.  One night recently, he wrote this paper about him having arthritis. He has never written about how he feels living with JRA and keeps much of his feelings to himself.  Hannah also shared with her dance teacher and dance friends about her having arthritis and shared pictures from previous blog entry's.  WOW-- not sure how this all happened but am so proud of them both. When Hannah was first diagnosed, I was determined to make her feel ok that she has arthritis and its not something to be embarrassed or ashamed of!  Now if they both can wear their splints without being embarrassed-- that would be incredible, too! Hannah has gotten over her hesitation to ride in the wheelchair on bad days. I actually think she enjoys getting all the attention from strangers-- my social kid has more opportunities to chit chat to others when strolling in her wheelchair.

Another infusion day!

Nothing a kid likes!

Hannah and Jake are both receiving Actemra and Solumedrol every 14 days at Shands Hospital. They are both at maximum dosage and taking it with other agents ( Celebrex, Methotrexate, and  Enbrel). It has continued to show signs of working ( fewer fevers, fewer rashes, labs improved). Just wish their joint pain was better managed.  It must be rotten to hurt from head to toes everyday of your life despite what medications taken, therapy, rest, exercise. weather. Jake's jaw has been his hot spot recently.  His chosteochronditis never seems to go away. Some days are more frequent chest pains than others. Hannah's neck and back  is driving her crazy!   Joint injections are still holding up although there is more wrist and knee pain/ inflammation  recently.  We are hoping Actemra will continue to bring good results and not bottom out as it has commonly lost its effectiveness after 6-9 months of treatment. Jake and Hannah are completing 8 months of being on Actemra every 14 days. Another......Halleluiah

Jake is finally scheduled for TMJ joint injections, but not until April 6th. It breaks my heart to watch him maneuver his jaws to allow it to pop and unlock.  Or shoving a plate aside and tell me he can't eat until his jaw pops or releases. He is not anxious about these injections- he is counting the days and praying for RELIEF!






The national shortage of Methotrexate certainly has created a scare to many families of children battling cancer and arthritis. This shortage of MTX started in November and has gotten worse. We were hoping to be able to get the shots at Shands Pharmacy- but as quickly as they get a order...it's gone.  Jake and Hannah have had increased side effects ( vomiting/headaches/loss of appetite/ tired/abdominal pain/ mouth sores) since they started taking the MTX pills. We are now trying our very best to find MTX shots.  Luckily, kids get the shots every 2 weeks during infusions.  Jake HATES shots and enjoyed the opportunity to take a handful of MTX pills each week rather than being poked! so...the search is on for Methotrexate shots!!

48+ Hours of Preparation.....

The dreaded upper/lower scopes were done on Kid # 2.  Jake has lost weight, has blood in stool multiple occasions, episodes of throwing up,diarrhea, and abdominal pain.  So we had to explore to see what may be causing these issues?? It was a much more pleasant experience with Jake than Hannah a year ago. I knew what to expect, he was amazing, and they prep worked! I have to brag.....He drank all that prep junk is less than 12 minutes!!!  Jake was a bit nervous about allowing St Joseph's medical staff accessing his port.  Its not a comforting feeling when they call another nurse from a different floor to come help and teach port procedures. Then Jake was rolled into the operating room with all the exposed medical equipment, several medical team staff and a cold, bright room with nobody explaining anything! ! Unfortunately, they did not initiate sedation until oxygen was on, mouth piece in place, ect.... Jake began to cry and was questioning if we made the right decision to allow them to use his port to put him to sleep.  Poor kid- he shared he was afraid he wouldn't wake up and die. He understands his port is connected to his heart and that freaks him out a bit! Giving Jake a kiss on the head and having to walk away is the hardest thing! I hate putting my children to sleep, even if its necessary! Everything went well, Jake did require a few extra drugs to get him knocked out, but all went smoothly.  Doctor was impressed how cleaned out he was and was only suspicious of his stomach.  Biopsy's were taken from his esophagus down to the ilium ( where Chron's hangs out). Fortunately, biopsy's were good and nothing showed up!!  Halleluiah............  But frustrating because this does not give us answers to these GI issues Jake is having, been having for several months!


The Sloan Siblings are starting Horse "Riding for Therapy" lessons next month. Decided to try something they might enjoy and have therapeutic benefits, as well. Jake and Hannah were also asked to try Acupuncture. Jake isn't interested, but he promised his rheumatologist that he'll try it. Jake and Hannah both get weekly massages and are always ready for them. I am amazed at how the massage therapist finds Jake and Hannah's hot spots each week without them telling her. I appreciate the extra time she tries to bring relief and even massages Jake's jaw.  She is so sweet to the kids- sharing cookies, cupcakes and fresh picked veggies from her garden after massage sessions.  I am thankful for the many professionals, doctors in our lives who DO UNDERSTAND this disease and seek out to try to help us in anyway.

I will continue to be positive, put a smile on our faces and not allow this disease to get the best of us! We don't always share the tears, the intense pain our kids endure and the challenges we face everyday, day after day! Thank you for my family and friends who have been there for us!  It helps my children to awaken and know there is a reason why God choose them to live this life and to be happy! A special thank you to my parents who have helped me throughout this winter. I appreciate you always being there for me to help look after one child as I run around to our many medical appointments. And I often came home to a dinner packed in a bag or homemade soup for Jake...THANK YOU!

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!

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!

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 say....it 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 hours......kids 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.