My JRA Heros

My JRA Heros
My JRA Heros- Jake & Hannah

Tuesday, May 7, 2013

Always Learning.....Autoimmune Diseases Keep Overlapping!

I received a email this week and on the bottom header, It really got my attention. Did you know?

Did you know that TODAY:
*50 million men, woman and children are in pain from arthritis
*140,000 people with arthritis will visit their doctor
* 3,750 joints will be replaced
* Arthritis will be the largest category of disability claims filed
* Arthritis will cost this country $350M
* 3 people will DIE today from arthritis

Our family also learned about another auto immune disorder, Relapsing Polychondritis. No matter how seasoned we are, there is so much more to learn and to continue to advocate and help find a cure. Last week, we had our regular rheumatology appointment and I was proud to share I thought there had been improvement with both Hannah and Jake. Then, I casually mention that Hannah has a new symptom of her right ear  getting HOT and RED.  I didn't expect to hear anything in response, but instead I was informed about the possibility of Hannah having RELAPSING POLYCHONDRITIS. I had never heard of such a thing, and asked for clarification and spelling of it.  Dr. S shared with me as to how it affects various tissues of the body, including ears.  More questions were asked, and I am to watch Hannah closely for inflammation in the ear when it turns red and hot and watch out for throat pain or hoarseness in her voice.  He also shared it requires much more AGGRESSIVE treatment, than Hannah's current treatment.  I asked what could that possibly be, and the answer I didn't want to hear......  Daily oral prednisone is the first line drug, combined with Methotrexate.   I HATE  METHOTREXATE and STEROIDS!! Hannah already gets IV steroid infusions every 14 days it messes with her in so many ways.  We will NOT claim Hannah has Relapsing Polychondritis and continue to ask for it ALL to go away!!

What is Relapsing Polychondritis? It is a uncommon, auto immune disease in which the human body's immune system begins to attack and destroy the cartilage tissues in the body. Tissues that can become inflamed include the ears, nose, joints, spine and windpipe (trachea), heart valves, rib cage, and sinus cavities.  The eyes, heart, and blood vessels can also be affected. It is also sometimes called the "red ear syndrome".  Initially, the most common sign to look for is a painful, red and swollen ear.  Fever, fatigue, and weight loss can also develop. It affects 3-5 people per million in the US, and can be life-threatening.  It is potentially a dangerous disease and with inflammation of the cartilage of the windpipe (trachea), heart, aorta, and blood vessels, it can certainly be fatal. There is  no one specific test for diagnosing. Relapsing Polychondritis can be associated with rheumatoid arthritis and ankylosing spondylitis.

We also got a brief report on Jake's recent Gastric Emptying Scan he had at Shands Hospital in late February. Jake had this gastric emptying test to help measure the time it takes his food to empty from his stomach and enter his small intestine.  It also is to help us to figure out why Jake is vomiting, having abdominal pain, and having a hard time gaining weight. His scan studies indicated that it took Jake 91 minutes, which was slightly abnormal and took longer than normal for his radioactive eggs to leave his stomach. Not really sure what is the next step ???  We are in limbo and awaiting our new medical consult appointments at Vanderbuilt.  In the meantime, Jake has lost a few pounds that he had just gained in March.  His GI issues are still a mystery to us.  We can't figure out his pattern and explain why he vomits when he does?  Sunday was a beautiful day- and we decided after church to go to a park to play a bit.  As much as Jake wanted to play, he kept coming back to me, complaining he didn't feel well.  Once again, he didn't make it an hour before vomiting. There goes any calories he had consumed that day!

On a positive note, we received Jake's chest scans back from the Pediatric Cardiologist. Happy to share there is NO MASS!!  Hip Hip Horray!! Jake overall had a good, healthy Cardiology appointment.  His ECHO and EKG looked good.  He wore a event heart monitor- we are still awaiting final report, but am assuming no news is good news. The cardiologist believes most of Jake's chest pains come from his severe costeochronditis. We were well aware Jake has severe costeochronditis and has had it severely  from initial diagnosis.  What we did learn is that Jake has a chest deformation, called Pectus Carinatum.  Pectus carinatum occurs when the cartilage of the ribs and breastbone (sternum) undergo excessive growth, causing them the sternum to protrude.  It may worsen when Jake has growth spurts or becomes a adolescent. There are basically two options to treat this as Jake gets to be in his early teens. 1) External Bracing 2) Surgery.  We are certainly going to pray that Jake's deformation does not progress over time and that he is not bothered by the appearance and can remain active without further issues.

Our family will continue to pray for a CURE and support the Arthritis Foundation.  Our dream is to find a cure and much better medications to treat these monster autoimmune diseases that affect so many children and adults. Thank you for those of you who have donated to the Arthritis Foundation or are walking this month to support my kiddos!

Monday, April 15, 2013

We Choose JOY!

We are almost at the point where we were a year ago when our plans came to a quick halt and I begin to put other things in perspective and count my Blessings. I am thrilled to share my mom has completed her surgeries and treatment from her second round of breast cancer. We choose to stay in FL and postpone our move to TN to be support for my mom. She amazes me and am so PROUD of her and her bravery.   So... Here we are again approaching the BIG MOVE to TN within a few weeks.

 It's been awhile since I've shared the latest and the greatest of this crazy disease.  Sometimes I need time to process, accept and find the strength to push forward and continue to find JOY in our lives.  Other times, I think why share?  But I do understand by me sharing our experiences, it has helped many families along the way who are also faced with making similar treatment decisions for their child and trying to understand this crazy disease.

Last year, I traveled 9,866 miles on the highways for medical treatments for Jake and Hannah. There isn't a place on this Earth I wouldn't travel to IF it could take away their pain and allow them to simply be a child.  We have been fortunate to have excellent team of specialists and we trust they are doing anything and everything possible.  The disease simply has a mind of its own and I have learned to simply find JOY everyday and count my Blessings. We have had many great outcomes and healthy reports throughout the past several months and we are ever so grateful. ( Healthy eyes, weight gain and continual growth, healthy heart reports, fewer fevers, healing broken bones, skin infections resolved, good labs and much happier days) In between those happy days, we certainly continue to be reminded of this monstrous disease it affects our family.

Within the past few months, Jake and Hannah were both put on a second biologic- combined with their bi-weekly Actemra and Solumedrol infusions. It wasn't exactly successful for either of them, and honestly just more stress in our lives. Hannah added Rituxan in November, but had reactions to treatment while being infused and required overnight admission. Then, 14 days later, she got another loading dose of Rituxan and also reacted and was admitted again to Shands Hospital.  We have choose to delay her Rituxan dosages and reevaluate with physician.

 In January, a miracle happened and we were able to get Jake approved for Rilonacept- an IL-1 inhibitor.  This medicine is very expensive and not approved yet with FDA for children with JA.  Our awesome doctor was persistent and  able to get it approved under a different diagnosis due to Jake's frequent fevers. Jake absolutely HATED these shots and cried every Friday night. You'd think through the years he'd adjust to shots, but he HATES shots. After 8 shots, insurance decided to deny  any further Rilanacept without the diagnosis of CAPS ( Cryopyrin Associated Periodic Syndromes)and he couldn't be on 2 biologic's at once.  We were aggravated with insurance to start a new drug then stop it suddenly, but Jake was THRILLED to toss the $28,000 shots. Within the same time frame, our insurance also decided massages are no longer covered.  The kids recently had  a slight change in anti-inflammatory's- switched from Celebrex 200mg 2x daily to Tolmetin 200mg 3x daily. Other than these med changes- they both continue to receive Actemra and Solumedrol every 14 days at Shands. 

In January- Jake had another round of bilateral jaw injections with arthrocentesis.  The surgeon removed a unbelievable amount of fluid ( 300+ml -left and 200+ml -right) .  He awoken from anesthesia to learn that he couldn't barely swallow or talk without gagging due to tube used for sedation. What really happened with anesthesia- we'll never know?? Unfortunately, Jake  lost 7-8 pounds post his jaw injections/surgery.
Jake doubled his periactin immediately and did everything to stop weight loss and increase po intake. The worse part of it all- these injections barely brought any relief for Jake and insurance left us with a BIG $bill$.

Good news- Hannah's collarbone finally healed and she didn't have surgery. She broke her right clavicle in TN playing on our playset in November.  It was a bad break and we got very mixed opinions from her doctor's and orthopedic specialists. Disease, medications and steroid use for the past many years didn't help the healing  process. We were pleased that after 13 weeks- it finally healed and causing Hannah no problems. She was a happy girl to fling her swing and return to dance with her friends and back on Twiggie for Horse Riding Lessons after 3+months.

Jake recently had a Gastric Emptying Scan at Shands.  We are awaiting results- but am hopeful no news is good news. He did really well eating the radioactive egg breakfast, then laying still for 90 minutes while they watch at how quickly food leaves the stomach and enters the small intestine. Jake continues to have frequent diarrhea, episodes of vomiting, weight loss and overall no appetite. Am pleased to share he has worked hard at eating within the past few weeks and has gained weight that he had lost post jaw injections.  YEA!!

If we didn't know already, Hannah has a healthy heart. We are relieved to know that she just has sinus arrhythmia and costeochronditis.  Her cardiologist feels as Hannah flares, her heart over works and creates rhythm changes. Her past two  EKG's and heart ultra sounds indicate no cardiac concerns. The heart monitors worn in the past did pick up irregular rhythms, but nothing to indicate the heart isn't functioning to capacity.   She will be continued to be followed by Cardiologist and will continue to pray that her heart remains healthy.  Jake will see Cardiologist this week- hoping he gets a similar, healthy report.

The news that I have had lots of time to process is that Hannah has now been classified and re-diagnosed to Juvenile Ankylosing Spondylitis. This should not of been a surprise to me, but just not what I wanted to hear. Hannah has had new areas of pain and includes involvement of her tendons and ligaments. It doesn't change treatment plan, just added new areas of concern. Nothing good to say here-- we just continue to hope for better days and that God will hear our prayers.  Every prayer spoken, every penny we toss, every wish we make....... We always have that one wish!

Within the next several weeks, we are having to say our good byes to many friends and medical staff, and even horses who have been such a significant part of our lives.  Last weekend, our family was able to spend one last weekend at Camp Boggy Creek with many of our JA Families. I'm trying to remember what they say, " We Don't Say Good Byes , We Say See You Later".  As we transition to TN, I know there is JOY awaiting for my family, new friendships will be made and these relationships with Arthritis Foundation, JA Families and medical staff throughout FL will always be cherished.  For all our friends, family and JA supporters, we'll see you later.

Everyday, I remind myself to choose JOY!

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!