My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Saturday, November 3, 2012


Thought it was about time to share with those friends and family who keep our children in your prayers and follow The Sloan Siblings Journey. About 6 weeks ago, we were informed by Jake's Pediatric Rheumatologist at Shands Hospital that he has a new diagnosis....... Juvenile Ankylosing Spondylitis.  It has taken a few weeks for us to process this information, learn about the disease and prepare ourselves as how we are going to help Jake manage this complicated, chronic disease, that yes, children can get, too!
We thought Juvenile Rheumatoid  Arthritis- Systemic type with Polyartiucular features  was a mouthful for Jake.  Now.....he's got new vocabulary  words and more than a 10 year old should ever have to accept and learn to cope with.  We have not shared all the facts with Jake yet, but he is aware of his new diagnosis, MRI findings and understands this disease primarily focuses on his spine. Juvenile Ankylosing Spondylitis (JAS) is basically a systemic autoimmune disease affecting the joints, heart, lungs, bowels, kidneys and eyes. It is a painful, progressive  type of arthritis that aggressively  affects the spine and  large joints.  Although it can affect any joint, more common joints include: hips, knees, ankles, toes, ribs and jaws. The heels may also be affected(Iachilles tendinitis and  Plantar fasciitis), making it uncomfortable to stand or walk on hard surfaces.  Inflammation in JAS  also occurs in the areas where muscles, tendons, and ligaments are attached to the bone. To help break down the word, "Ankylosing" means stiff or rigid, and "spondyl" means spine and "itis" refers to inflammation.  Over time, the joints and bones may grow together ( fuse), causing the spine to become rigid and inflexible.  These fused bones are brittle and vulnerable to fractures. The lower neck is the most common area for these fractures.  Bones in the chest may also fuse ,causing breathing difficulty, and limits lung capacity. The fusion of the spine can lead to a forward curvature of the spine, a forward-stooped posture. Complications from the disease varies from each child, and JAS does not follow the same course in everyone.

Jake's new diagnosis still shocks us and I tend to try to figure out 'why"?? Juvenile Ankylosing Spondylitis is to be considered a multifactorial condition, meaning  that "many factors" are involved in causing it.  There is no known way to prevent JAS.    The factors are usually both genetic and environmental, where a combination of genes from both parents, in addition to unknown environmental factors, produce the trait. It is also highly associated with the antigen/protein called HLA-B27. JAS strikes young people, typically between 17 and 35 years old and more common to affect males ( 2-3x more common with males than females).Our family does not have any genetic role (nobody diagnosed with AS) and Jake was not born with the HLA-B27 gene. So I often ask, why, why Jake?

Some of the early symptoms of juvenile ankylosing  spondylitis include:
(However, each child with JAS may experience symptoms differently and the severity of symptoms and disability vary from each child.)
  • back pain, usually most severe at night, during rest
  • early morning stiffness
  • stooped posture in response to back pain ( bending forwatrd tends to relieve some pain)
  • inability to take deep breath ( when joints between ribs and spine are affected)
  • appetite loss
  • weight loss
  • fatigue
  • fevers
  • anemia
  • enthesitis ( pain at the site of attachment of muscles, ligaments and tendons to bone)
  • joint pain
  • vague pain, usually in the buttocks, thighs, heels and shoulders
  • painful eye inflammation
  • organ damage, such as the heart, lungs and eyes 

There is no cure for JAS, and the course of the disease is unpredictable.  It is often said that when a child is diagnosed with JAS, it usually results in a much more severe disease than adult onset of AS. .The children who have JAS have a worse functional outcome (in terms of work disability, functional impairment, quality of life, and spinal involvement) compared to adult onset of AS.  Treatment for Juvenile Ankylosing Spondylitis is individualized but overall the goal is to reduce pain and stiffness, prevent deformities, and to help children like,Jake, maintain as normal lifestyle as possible. Educating ourselves and appropriate mild exercise  is very important. Swimming is ideal,as it avoids jarring impact of the spine.  Exercise programs designed by physical therapists with regular back and chest exercises are crucial to help improve posture, spine mobility, and lung capacity. Hot baths, heat and massages are also beneficial. We are very thankful for Jake's gift of his hot tub from Make-A-Wish Foundation. Jake continues to get weekly full body massages from Ms. Patrice.  ohhhh......we just can't begin to say enough wonderful things about her. Jake would go everyday, if he could.
Non-steroidal anti-inflammatory drugs may provide pain relief and decrease morning stiffness, however do not alter the course of the disease. With taking these meds routinely, it can also cause stomach upset, nausea, abdominal pain, diarrhea and bleeding ulcers. Jake has been dealing with these GI issues for a very long time, even after stopping Methotrexate. For those children like Jake who is unresponsive to anti-inflammatory meds, the  use of biologic agents {TNF ( tumor necrosis factor) blocking medications}, such as: Enbrel, Humira, and Remicade are necessary part of treatment. Unfortunately, Jake has been on all of these biologic' s and has continued to fail and not respond in treating his disease effectively. Jake and his sister, Hannah, have both been on Actemra bi-weekly infusions  for the past 16 months.  Actemra was the newest biologic approved by the FDA and is a IL-6 receptor drug. Unfortunately, it has lost it's effectiveness and Jake is no longer responding to it as he had in the past. His fevers are back almost every evening, multiple joints are inflamed and he literally has joint pain in EVERY joint in his body { toes (sausage toes), ankles, knees, hips, back, neck, shoulders, elbows, wrists, fingers, jaws and ribs}. Jake's recent cervical MRI showed "thickening", and his doctor believes it's been there for awhile. It is time to try another drug, but there is nothing new available to try. This is what is so hard to accept.......the disease is not being controlled and we have ran out of options at 10 years old. As of today, we are TRYING to get Rilonacept  (IL-1)approved as a "Fever Syndrome " medication. {It is currently in a closed study- treating Systemic JA.} We are unsure if insurance is going to approve this medication, but we got HOPE on Friday that it just might be a option! Praying hard and anxiously awaiting for a updated phone call from Shands. Jake will not stop any of his current medications, he will be adding Rilonacept weekly  as a second biologic .  This scares me too! For those of you who understand the risks involved in using biologic' s, and the "Black Boxed Warnings" and the lovely side effects of these drugs, especially when used with combing TWO biologic' s.......  I won't even begin to express my concerns and worries there.....     I am fully aware of the serious conditions/infections they can lead to, and even death.  I have had a lot of restless nights and heavy heart trying to process our upcoming changes to control these monster diseases!  Hannah is adding a second biologic- Rituxan this Wednesday, despite her re-occurring impetigo/staph infections. Her cardiologist gave the approval to go ahead and proceed with new treatment plan.{ Rituxan aims to help stop the activation of a certain type of white blood cell- called B cells. With fewer B cells, the over-activity of the immune system deceases}.
So..... we are adding a second new biologic for both Jake and Hannah and praying to get more control of these diseases with no serious infections or problems. Trying not to give up HOPE!

Jake keeps going - pushes through his pain & challenges everyday!
Not much more to share, new fancy name (Juvenile Ankylosing Spondylitis), but this name didn't change how Jake has been feeling or change his treatment plan.  Sometimes it takes a long time to see how disease progresses and to watch for patterns. Unfortunately, JAS is difficult to treat, but we know we are in good hands at Shands and ultimately God is in control. We never give up Hope that God will completely heal Jake and Hannah.  Until then, we only do what we know to do and try to make everyday special! 

Thank you for taking the time to learn a bit more about Juvenile Ankylosing Spondylitis. It's a learning curve for us, and we will continue to support the Arthritis Foundation. As Jake and Hannah and the other 300,000 children need better medication options and a cure!  Our family appreciates the prayers and the support.given by those in our lives!

Thursday, October 4, 2012

It will all be ok in the end.....

For the past few months..... we've been trusting that all will be ok. Our family had a bump in the road, as we like to call it and have been focused on helping my mom beat breast cancer. We've been thinking positively PINK since May and am happy to share my mom is beating her second round of breast cancer.

Briefly, while my parents came to FL to watch all their granddaughter's dance recital in May, my mom had her annual mammogram. A suspicious lump was found and it's been a hard road since that day.  My mom is a breast cancer survivor of 22 years, so to go down this road again.... was just frightening. She had a double mastectomy in mid-July and is still gaining her strength and getting prepared for next phase- reconstruction surgery on December 5th.  Our family was fortunate enough to still be in FL and just shy of 2 weeks from moving to TN. Trusting God that he had a different plan for our family to move... We wouldn't trade our time with Grandparents for anything.... Hannah and Jake have both been a huge support in my mom's recovery!

2012 JA Conference
Happy Campers at Camp Boggy
Our summer was busy and flew by so quickly. There were days I didn't know if we were coming or going. We managed to take brief trip to TN to bring back a few necessary items and clothing and close up our TN home.   A week at Camp Boggy Creek and the annual JA Conference in St. Lious was Jake and Hannah's summer highlight.  The friendships that are made at camp and conference  are priceless. Their isn't a day that passes that we don't talk about our new friends, send cards, emails, and facetime each other to keep in touch until next gathering. Before we could barely was time to get back into the groove of school.

Back to Fall  was a simple transition.... no stress on changing physicians or getting to know new community or finding a new church home.  We are continuing homeschooling Jake and Hannah  through Polk County Hospital Homebound program. It has really worked great for our family and appreciate the time and effort  our assigned h/h teacher has provided for Jake and Hannah. Hannah has really flourished in 2nd grade and Jake continues to LOVE to learn. They are a joy to homeschool and I wouldn't want it any other way.

We are disappointed to share that Jake and Hannah both are finishing up their final infusions of Actemra.  They both have been getting Actemra infusions every 14 days for the past 15 months. It has not been a perfect drug, never experienced remission or close to it, but did certainly help to manage their  disease in some ways, along with other modalities of treatment.  We have tweaked it as much as possible, adding second Biologics (Enbrel), joint injections, maximizing dosages, and increasing steroids. We have been told....Actemra has lost  it's effectiveness after antibodies built up and it simply is no longer effective for Jake and Hannah.   I knew this in my heart..... Jake's fevers have returned almost every evening. Jake and Hannah both have inflammation in many joints ( toes/knees/wrists/fingers/chest/ ankles). I often hear complaints about achy hips, shoulders, backs,jaws and NECKS! Last month was a hard day.....while both kids getting infusion, MD shares they have both failed Actemra and it was time to move on and try something else ??

Actemra infusions coming to an end.. wish there was more drug options.
Changing drugs is so hard..... Unfortunately, there is nothing else NEW for Jake and Hannah to try. I hate that we have exhausted all the current drugs available and now grasping at whatever....  So we have a tentative plan to go backwards and try a combination of two biologic's and wait and see.... Not really sure which drugs it will be.... Dr. S is TRYING to get Jake approved on a type of drug ( Rilonacept) that is currently in a closed drug-study and not yet approved, but hoping because of frequent fevers it can be approved as a fever syndrome drug. Possibly trying it as a combo with Rituxan infusions, as well.  The final decision will be made next week pending insurance approvals and review of Jake's cervical MRI report.. We were also told that Jake very likely  has ankylosing  spondylitis- Systemic type. I have not digested this info yet-- not at all! Even the thought of his spine fused together and then add it can affect all his organs. I'm trying to tell myself, it will all be ok in the end.  But with this type of disease.....when does it ever end??? The good news is that Jake is finally gaining weight and less episodes of throwing up.  He has gained 7-8 lbs this summer and we couldn't be happier with his weight gain!

Hannah's impetigo spots.
Hannah will also be having med changes, just not sure when and what? Hannah has been battling nasty impetigo with staph infection for past 9 weeks. She has been on 3 different ATB's as well as applying bactroban cream on affected spots. Just when you think it's gone.....the nasty spots return. The infectious disease doctor doesn't want Hannah to have any med changes until we know for sure this is cleared up and really gone! Who would ever imagine....a small bug bite would create all this. It's no big deal for the average kid to get-- but Hannah has such a compromised immune system and being on two biologic meds don't help any. She also needs to have final clearance from cardiologist before med changes can occur. We are pleased to share her heart ultra sound was good.  Her EKG's and heart monitor readings do indicate sinus arrhythmia, but nothing alarming. Hannah will be finishing up wearing  her second 30-day heart monitor next week. Not sure if we know what causes her "heart episodes", but seems to come with flare up's??  So it was discussed that we may try Rituxan and Oriencia for Hannah. ugh...... two biologic IV meds. It was also discussed to consider maybe trying IVIG.  That's three NEW IV meds-- plus Jake's two new IV meds! Needless to say-- I've been a little worried about the upcoming changes and how it will affect Jake and Hannah. Reminding myself, it will all be ok.
Due to the recent outbreak of meningitis linked from steroid injections, I'm going to hold off on any joint injections for Jake and Hannah.  Dr. S asked if we could use ultra sound and maybe inject joints that are needed next visit.  I'm going to wait--- don't need that extra worry right now.  Jake is scheduled to have his jaws re-injected in about 2 months.  We aren't using steroids this time, going to try something new, Remicade.

So as I process this crazy disease that doesn't stop, I remind myself, it will all be ok. 

Wednesday, April 18, 2012

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 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 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:  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'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.

Friday, March 23, 2012

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. 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!

Wednesday, February 22, 2012

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'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!