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"!

Wednesday, February 18, 2015


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!


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