There is Still - "NO CURE",... for "JUVENILE AUTO-IMMUNE ARTHRITIS" (Also known under many types such as,... Juvenile Idiopathic Arthritis, Systemic, Lupus, Psoriatic Arthritis, etc..... ) and with some types/children, the disease not only attacks their Joints, Bones, Muscles, Kidneys, Hearts, Lungs, etc,.... it also attacks their EYES as well,....known as "Uveitis". There are currently, Only Medicines to help "Slow" the joint damage, growth problems, sight problems, including blindness, skin, scalp & nail disorders, fatigue, pain, and emotional problems, including how they can seem-look "normal",... and people not knowing how they are suffering from this horrible disease. We need to find a cure!
Thank you to Everyone who helps raise awareness for Bailey & the 300,000 children,... "living" with any type of this horrible auto immune disease. These children didn't ask for this life that they were given,.... They just have to live it, - the best they can - With our help - And with God's Hand.
We SO MUCH appreciate the Doctors, (Pediatricians, Ped. Rheumatologists, Eye Specialist, etc...) Nurses, Dentists, Theapists, Lakeshore Staff who help keep her moving, and all.. who help with JIA & Uveitis!

Two of the Medicines Bailey has been on for 6 years now is Methotrexate (Chemotherapy drug-used at a smaller dose than cancer patients) We have to give her an injection of this medicine each week at home. Also, her Remicade IV Treatments are a Biologic Medicine made with a mouse protein and are extremely expensive. (The latest insurance EOB is billed at over $15,000.00 Each Treatment!!!) --No wonder Insurance Companies are trying to make these kids people try Cheaper drugs first,... Dangerously letting their disease Progress!!!!) So even WITH Blue Cross, or other expensive health insurance, this leaves a huge burden for families.
AND - of course, the Organiations who work "Daily" to "Raise Awareness, Funds and Research" to help find treatments, better medicines,... and strive for a CURE! Such as "The Arthritis National Research Foundation" in Long Beach CA, "The Arthritis Foundation", The EYE/UVEITIS Research Groups, The Many Many Various groups and people who help ad have helped spread the word & Baileys Video & Message, to raise awareness,.... and Of COURSE - The SPONSORS & SUPPORTERS of Juv Arth Research!!!! You may think your voice is small,.... but it is HUGE to families like us! Thank you for Speaking Out & Speaking Up!

NOW: The "Must See Video" & Other Videos & Links are below to the right, under "VIDEOS & Links"!

Thursday, March 5, 2015

Finally back on the Remicade - after a year of searching/trying!

IV in & eating a cookie


Just Waiting it out



Tired
Getting IV out & Ready to go!   Sleeting and
29 degrees out!

Wednesday, March 4, 2015

MEDS CAME & Tomorrow is first treatment again...

WOW, Supplies came for 1st two Treatments!
Here is the $12,000.00 Remicade




 
     Well the meds finally came!!!  All I can say is WHEN GOD MOVES A MOUNTAIN OUT OF YOUR WAY.... HE REALLY MOVES IT! There is no other way to explain how all this happened.... But to declare it is a miracle. It still baffles my mind !  But, yes I am still scared of the meds (see pics below), but must remain faithful to believe that HE wouldn't have moved this mountain, in this huge way, unless it was good... So as we begin this journey again.... I will fight Fear with Faith. 
      ��. PS- Brodys MRI:  dr said si joints look good but there were a couple pockets with fluid... And asked if he has had diarrhea..??? I said No... So he wants a stool sample this week, just to check.
     ***Thank you to all who have been praying for Bailey and Brody, and please continue to!  Bailey will get her first infusion treatment, in over a year, tomorrow.
.... I'm a big ball of emotions... Happy, fearful, hopeful, reluctant, overloaded, anxious, drained.... But somebody's prayers are getting through, so please keep it up and thank you for your faithfulness. ��
 
 
 

 
 
 















 
 
 
 


Wednesday, February 18, 2015

MY GOD IS AWESOME !!!!

Check out this Update & then check out one of my favorite songs,.... which means even more today!!!! AWESOME, By Charles Jenkins
 

Some exciting news:

After weeks on the phone to insurance, drug companies, infusion places, etc...... We may have a Breakthrough!!!!!!

I was inspired by a man in church Sunday who spoke of how he had stage 4 cancer, and 7 months later, was healed!!!!! Praise God, and I thought,.... We'll if God can do that,... I have faith he can help us with Bailey! So, during worship, I prayed, cried, had my husband and another friend on each side of me praying, as I was trembling....

Long story, but, here goes:
Our Insurance company has a separate drug company, the drug company has a separate "specialty Meds dept" for Meds like the chemo, and biologics...... that Bailey takes. These Meds are mail ordered, because of the outrageous costs mostly,.... And Children's Hospital will not accept Meds like this brought into their hospital, to be infused into patients... (Therefore being billed @ $16,000.00 for each treatment she received there.) So that's why we were looking into a home infusion option, and hitting wall after wall because of these places not wanting to do the Remicade.... And/or.... Not infusing pediatric patients.

Well, out of the blue.... The specialty pharmacy company called me and said our insurance company finally approved her for Remicade again and will cover cost of the Remicade medicine ....(5 vials currently, which is pretty costly.....) But as I've been explaining to everyone, there is NO place that will do the infusion of it!!!! --- Well, she explained to me that since Remicade has to be done by infusion, over a few hours, and monitored by a nurse the entire time,.. then the infusion costs, for "administering" it to her,.... Is also covered under the specialty Meds portion of our prescription plan !!??????!! WHAT ?!?!?!?

Yea,.... In shock and unbelief, I questioned her many times.... How could this be, after years worth of $15-16,000.00 treatments,..... How could this now happen?!? She said well before, our insurance probably filed under major medical,..... But now it is filed under the specialty Meds portion of the prescription plan,..... I again asked,..... So we pay our portion for the medicine, but the infusion center, which THEY found and arranged,.... Will bill my prescription company, not us, for the administering of the medicine also!, WHAT ?!?!?!

I've been praying, as many of you also have, this past year, that these painful Humira shots (that some say burns badly, and some say it feels like shooting glass under your skin) could stop and somehow get her back on Remicade, that seemed to work better and Bailey likes much more than the painful weekly shots of Humira.... There are Pros and Cons with both, and the nurse told me on the phone this morning, that they are about the same, TNF-Alpha , Biologic Meds,... (But both come with a black box label warning that, while taking these drugs, there have been rare cases of getting an Incurable Lymphoma Cancer (fatal) while taking these drugs..... So that's always in the back of my mind,..... Especially since almost everything that has happened to/with Bailey,.... Has also been called "rare" or "not textbook"....

Since having to switch to the Humira, she has been more tired, sore in more areas, grumpy, emotional, etc... And the Psoriasis has gotten way worse, appearing on her scalp, legs, tummy, neck, elbows,.. Almost everywhere!!! ... BUT her eyes have remained clear..... Since doubling the Humira dose.

The Remicade, made with mouse protein,.... Eventually is rejected from your body as it is a foreign substance that's not supposed to be in there..... And each time that happens, we've had to up the doseage and the weeks, ( per her body weight, she should be at 150 mg,.... But she is at 500!) as well as using steroid and dilating drops to get and keep her eyes clear again, when the cells attack...trying to blind her quickly... The Chronic Uveitis part of this mess! But she liked it better than the Painful Humira shots, and she wasn't as achy and sore and tired then.... (Now, some of this could just be the disease itself progressing more..... But we don't know till we try). Downfall for Remicade was that she was getting blood and protein in her urine, during labs. Had to regularly see Nephrologist, who eventually had to do a biopsy of the kidneys.

We know there is no Cure for this disease, and we know that the Med. choices are scary,.... But have been praying asking God to choose the right drug, and make it possible/easier on us all. So, as the Devil always does,.... He has brought doubts, unbelief, and what ifs to my mind again, day and night,... But I now feel I have a little more faith then I had before and know that we are to expect good, not bad,... And what He can do for one person, he can do for another.... HE CAN TRULY MOVE MOUNTAINS AND MAKE A WAY WHERE THERE IS NO WAY!!!!! This mountain has been in our way for 8 years of her precious life now.... We are truly grateful that she is not bed ridden, disfigured, confined to a wheelchair, or blind.... And we know this isn't a CURE.... But it's the next best thing!

He has made a way, where there was NO WAY,.... Believe me, ..... I've been trying like crazy to get her Remicade back, and was repeatedly told - there is NO way! So I figured it was a sign from God that this Humira must be the better choice...... But now I'm thinking that He just Totally "BLEW UP" this mountain and is leading us,... to the best way.... HE has made a way! WOW!!!!

I know of and have experienced some miracles and answered prayer over the years,..... But this Mountain, this Massive Obstacle that has lived in our way for years now and we couldn't SEE over it, let alone GET over it, or around it or through it.... Has now been moved, by the only one who could move it!

She will still be on her other Meds, like the Methotrexate (low dose chemo) shots, the Sulfazine, etc... And since these bring her immune system down even more, she'll be more likely to catch sicknesses, infections, etc... But we will just continue to be careful as we have in the past 8 years, and monitor her labs, and have faith that this IS His will, for now.... And that He IS walking through the Valley with us, and it's time for me to FEAR NO EVIL....

Not letting the devil get a foothold into my mind, (as he has for years) as I've tried to live and to function (paralyzed in fear at times & failing miserably some days) each day, in fear, of the what ifs..., the rare side effects that pop up out of nowhere and frustrated they end up with no explanation, because more research needs to be done,... The fear of future side effects, and outcomes we will be faced with... The constant checking on her at night for breathing, the Guilt that I feel, when she doesn't walk/run perfectly normal, the "invisible illness" part that no one sees or understands, because she looks normal....and the emotional roller coaster she lives on. But worse yet,... the fact that when I look into her eyes,.. I am constantly checking/monitoring to see if there are different pupil sizes, changes... indicating the horrible cells are back attacking..... - and therefore - I'M NOT JUST SEEING THE "BEAUTY" IN HER EYES.  But today when I told her about all this.... Her Eyes LIT UP with happiness!

TODAY, I have a little more stregnth, faith in God, and assurance that He wants GOOD for His people,... And we are His people! And for this all to happen, like it suddenly has,.... IS A MIRACLE! And it gives me chills when I even think about it, and all the people who have been praying for us for years,..... And only getting - mostly bad news reports, or updates..... And today I can share this GOOD....EXCELLENT update/news with you All!

I still don't know where this all leads,... But I KNOW, I am Not Alone! For HE has literally, moved a MOUNTAIN for me, and it's unlike anything I've ever experienced before!

CLICK HERE!!!! :
http://youtu.be/32SflTl0rZ8

Thursday, January 29, 2015

Update: Stilll waiting,..... and hoping,... and fighting,...

Sweet Picture of Bailey, Years ago.... :)


https://www.facebook.com/CureArthritis/posts/10152744746828892

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> by Arthritis">https://www.facebook.com/CureArthritis">Arthritis National Research Foundation.
UPDATE: 
Well,.... round one of the "In Home Infusions" failed.   Next, the appeal,.... well after several hours on the phone with Drs office and mostly Insurance Company, R/X Company,...... finally got a letter stating the R/X Remicade Med. is covered under our insurance (which we KNEW,....as she was onit almost 8 years !?!?!) ----- but nothing about the In Home Infusions - that we are wondering about !!????!  WOW !!!!  How hard is it to get 1 answer from BCBS Insurance ?!?!?!  We are just WONDERING " IF " it is a Possibility to do this or not!!!!!!   And if so, can we afford it????  So far so many roadblocks, yet we keep repeating the Same information to Several People Involved ?!?!? IS HOME INFUSION THERAPY OF REMICADE COVERED UNDER BCBS & IF SO ...... $$$ HOW MUCH WOULD WE BE RESPONSIBLE FOR ??????!!!!!  UGH...... !!!!!!
      They were$16,000.00 Each, when we had to stop them and switch to Humira,.....  Why is it SO hard to get an answer ???!!!!   Meanwhile, she is dealing with more meds, more dry, flacky,  plaque psoriasis patches on her body and scalp...... more emotional rollercoasters,..... attitudes from ____, Complaining and fighting against meds - even hating the drops and ointments for the psoriasis spots, that help her.... and NOW she catches a COLD ?!?!?!!   OMG !!!!!   So - No Humira last week for her, since it would bring her immune system down even more, and the flu scare is rampid enough right now for regular people, let alone Immune Suppressed Kids !!!  UGH !!!! Which means more soreness & Pain & Grouchiness !!!!!!
     OK,... Tantrum DONE!  Time to put on my BIG GIRL PANTIES and get back to business,... well,..... Life - Church, Friends, Home School,  Bible Study, Classical Conversations Classes, Appointments, Swim Therapy, Lakeshore Foundation, Piano, housework, declutttttering many piles, trying to get more organized before I have a stroke (lol) , Back to Insurance Companies, R/X Plan companies, Middle Men, etc, etc, etc...... WHY do we hold on sometimes?...... JESUS! The Only reason Im still here ! :)

Thursday, January 15, 2015

Looking into IN HOME INFUSIONS ........

We'll,.... It's a new year and these painful Humira shots every week, just are not working, even with the other Meds.  The psoriasis part is showing it's ugly head everywhere.  Legs, elbows, scalp, tummy, and now her face ?!?!  One Angry Momma!!!!!   Her emotions are all over the place :(.  

SO.... I have spent the last couple weeks looking into Home Infusion Therapy for the Remicade, to go back on it.... IF we can afford it!   Insurance is a joke sometimes!!!! When we had to stop these infusions over a year ago, they were billed at over $16,000.00 EACH!!!!    BCBS doesn't pay much of that at Children's Hospital, so I'm looking into how much they would be if a RN came and gave them to her at home.....  Allready made several calls to dr office, insurance companies, pharmacy part of insurance, drug company.... Spent days on the phone back and forth with insurance company just for them to LOOK INTO the possibility of this!!!!!  Because of allergic reactions possible with Remicade they may not do it.  And also they said, I'd have to find an In home infusion therapy company that would come out and stay however many hours needed to run the infusion. :( :( :(.

I'VE SPENT THE LAST EIGHT YEARS ,- ( while she was on Remicade and still in pain and cells attacking her body and especially her eyes,.... Trying to blind her, And that it's made from "mouse protein," (which no momma wants put into their child's body) and her body begins to reject it after a while, (because it's foreign)... and she has always been way over her Max doseage of it,... While taking the low dose Chemo, methotrexate and other Meds AND eye dr treatments,... Drops, etc..., and having to see her Nephrologist often due to blood and protein in her urine, and having the kidney biopsy done.... . And in fear each and every day waiting for the side effects to pop up, ..... Mostly the lymphoma cancer-especially since she was over her max doseage for years!!!!) - HATING THIS DRUG.... Now it's looking like it's the only thing that kept her with less flares and closer to remission.... Although we've never reached remission in the eight years since diagnosis at age 2 !!!!!  She has had to endure so many RARE SIDE EFFECTS of the disease and the drugs, it's ridiculous, when some people can use one pill or shot monthly, and go into remission!!???!

I thought the Humira may have been a blessing in disguise, (when we lost help from CRS and could no longer afford the thousands of dollars per treatment)... but it comes with it's own problems.... Especially the fact that it burns bad going in, even after numbing cream for two hours and ice packs, she still runs from me, hides, and screams!!! :(  and she is now taking over the adult doseage of this!!!! With two other Meds..... And the psoriasis part is appearing more and more! She is sore a lot, especially feet, legs, hands ( which doesn't help with doing her homeschool work) and back/neck.... She doesn't sleep well, and her emotions are all over the place!!!!!!    But to look at her, most times, you can't tell there is anything going on in her little body, but there is SO much happening!  Her body is fighting against itself and can not shut off, thus causing all this damage!!!  Something has Got To Give !!!!!!!!

Sunday, August 17, 2014

It's Been A Long Time, I Know,........

Hello Friends!   I know it has been a very long time since I have shared with you the updates on Baileys condition.  I am sorry and will try to find the strength to do better in the future, but this disease swallows up the whole family..... it has made me Angry, Sad, Depressed, Confused, and Quiet.  Today I will just give a brief update, and hopefully add more later.  Thank you to all the followers & friends who continually pray for us,.... I believe it is the only thing that is getting us through this!
Bailey can no longer have her Remicade IV Treatments that she got for almost 7 years, due to the cost.  They are billed at over $15,000.00 EACH, and Blue Cross only pays about $6000. of that and Childrens Rehab Services of Alabama CRS, was helping with the remainder, but we no longer qualify for their assistance. (One of the things that make me SO angry!!!! Because it should depend on the childs NEED for the Medication, NOT the Income of their Families, when its that large!) I don't know anyone who can pay that much for each treatment, whether they were the 2 week treatments, or the 6 week treatments, where we had to stop,....)    So, Our only other choice was to start her on HUMIRA Shots.  Those of you who know about it know why I am unhappy with that!  It Burns Bad, and people say it feels like Glass shooting under their skin.  Believe it - because there have been days where we have tried everything to get her ready for the shot, and still end up having to chase her down outside, kicking and screaming - or find her hiding. :(  As a parent, this brings on depression, resentment, anger, and withdraw..... it has affected our lives in many was, one just being this blog.  I am so upset about all of this happening, and feel so useless, & hopeless... there is nothing I can do!)  Anyway, there has also been a couple Pills added to her daily regimen, that don't seem to work either. - And the biggest Kicker ----- Her Uveitis (cells attacking her eyes) has flared several times while on this new Med.  So the steroid eye drops and dilating drops have also had to be used several times (concerning to Drs because they to can cause cataracts & glaucoma also)  At one point Eyes drops 16 Time a day. So The Humira has already increased from the childs dose, to the Adult dose -AND instead of biweekly - is now Every Week, thanks to the last eye flare.  We do the knumbing cream 1-2 hours before and the ice pack after that, tried the Buzzy Bee device to distract, and none of these work!  It Kills me each time she screams and says " No Mommy, Please, No Shot, Just Don't do it, It doesn't help anyway - please don't...."  Then as I finally get the needle in and start the med,.... she screams "Ouch... Take it out Please Stop!!!!!...... etc"  It is one of a parents worst nightmares,.... you have to actually numb your own emotions, to be able to withstand giving the injections and trying to drown out the sounds by thinking - "this is what I HAVE to do to Help her,...and I'm only doing this because the Drs say I have to,... or she will be crippled or blind!..."  What a choice, huh?!?  
     Amongst all this, her Psoriatic part of it has flared a few times also.  Her scalp and especially behind her ears become inflamed, itchy, then raw....  Her ear (just one again), has swelled and turned red and purple, for no reason we can find again..... She aches more all over now.  Especially complains (when she does complain - which she usually wont) She says her neck and back hurt,.... her knee, ankle, feet, hands hurt,... and has many headaches......... Her emotions are another really big issue.  She can be mad at the world at one time, then crying and running off at anther time..... Sometimes she says she HATES to go to LAKESHORE FOUNDATION (where she gets swim therapy , etc...to keep her moving) and I just have to ignore her and take her anyway.... some days are harder than others, but usually shes better once shes there - the instructors are so nice and kind, and they know her situation & seem to help calm her and help her to have fun - which she needs more of ! :)
     Well, there is much more, but for now, its time to go watch Kristy McPherson Womens LPGA Tour, who had a form of this disease as a child and thankfully went into remission and serves on the ANRF Board to help spread awareness and maybe one day find a CURE for these Kids who suffer in Silence!  Remember for current updates, we are usually on our Facebook Page, listed at the top & Thank you to everyone who has been and continues to pray for us,.... I believe that is ALL that has gotten us this far!

Wednesday, March 5, 2014

We'll it's been a LING time since last post, I know.... But we be had a lot going on!  Will try to detail and upload pics later..,. For now she is back at Lakeshore Foundation for warm water therapy... Very moody, had to stop the $15000. Remicade treatments because of no more assistance- started Humira (which burns, she screams " mommy no please, take it out it hurts!!!"  I can't stand much more!) eyes are in another flare since stopping Remicade!!!! So she's back on predforte steroid drops every hour-16 times a day... And dilating drops to keep her pupil wide open 24 hrs a day to prevent. Any scar tissue from forming etc..... She is a little nearsighted in one eye right now ...  She isn't very happy, seems so down each day... Back to therapy to Children's Lighthouse next week! One minute she's fine... The next she's off crying or screaming about something little.... She also started Aa new pill this week to help with inflammation and pain... First time taking pills and they're pretty big do u can imagine how that's going!!!  She had to have dental surgery at Children's Hosp (with lil brother)... Medicine/chemo methotrexate eating Way at teeth, do 4 back had to be pulled and spacers put in...  Wow... So much more, just no time!!!!!