Love, Lucianna: Jingle Bell Walk & Music to our ears!

Tuesday, December 11, 2012

Jingle Bell Walk & Music to our ears!

Jingle Bell Walk for Arthritis 2012

Dear friends and family,

Carrie & Skylar -
"Our marketing team!"

We had an excellent turnout for the Jingle Bell Walk for Arthritis last Saturday! We had friends, family and coworkers walking with us. Nothing could have prepared us for the outpouring of love we received in support of our littlest princess. We set an ambitious goal of $3500. (My hope was to raise $3000.) That goal was crushed, with a final tally of $4140! We couldn't be more excited! We were the top fundraising team at the event!

My dear friend Carrie made over 30 necklaces/awards with a pendant that doubled as a Christmas ornament and had Lucianna's picture and the year on it. Mom, Dad and big sister all had a variation of the photo on our pendants. What a thoughtful idea, everyone loved it! Thank you Care (143*872).

I have never participated in a charity walk before but have donated many times to the Breast Cancer walk. We carried a banner that said, "Walking for Lucianna! Our Juvenile Rheumatoid Arthritis and Uveitis Champion!" and when other walkers and runners saw it, they would clap for us and cheer for Lucianna, yelling, "Go Lucianna!". These moments will live in my mind forever.

I wish I could thank everyone that helped us to meet our goal in this blog post, but you know who are and so do I. We are deeply grateful and touched by your generosity. Thank you for caring, for checking in with us to ask how she is, for reading this blog and for opening your wallets. You sent a clear message that it is not okay for a child to suffer with pain, or worse, face loss of sight because of this disease.

"Mommy, I wanna 'wun!"

Friday, December 7th, marked the 6 month anniversary of the onset of her symptoms. I didn't realize we would have such a long road to get her better but there is one thing I have come to realize with absolute certainty: I am grateful for JRA. It has opened my eyes to so much and I have learned so much. This disease has taught me to never take a single thing for granted and has made me grateful that my child has a disease that is NOT going to take her from me. I saw a St. Jude's commercial on TV, (a charity we also donate to), and Jennifer Aniston was interviewing two young girls who clearly had cancer. If you can bring yourself to watch it, the behind the scene's clip is here: Jennifer Aniston's St. Jude video It is a tangible reminder that there are parents out there who face the unthinkable diagnosis. Let's not forget these families. I personally love my St. Jude's return address labels!

What a great day!

At a time of year when we all count our blessings and try to be thankful for the gifts we have in life, I am thankful for JRA, [Uveitis, not so much. lol.] I am hopeful that 2013 brings remission, good health and nothing but gratitude.

Lucianna had her two week follow up eye appointment today. No inflammation! Drops are now down to 1 dose, left eye, every other day. What a fantastic Christmas present!!! This was music to our ears! We see her rheumatologist on January 10th. We hope to learn that Lucianna is free of any inflammation in her joints and that her labs come back with no signs that the medicines are causing any stress or damage to her liver. While we wish to just get to the end result...we are taking baby steps.

With that, I will end with Lucianna's favorite Christmas song:

HAVE A HOLLY JOLLY CHRISTMAS! (video inserted)

Merry Christmas everyone!

Love,
Lucianna's proud and grateful mama

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Her Diagnosis & Current Condition:

***NEXT EYE APPT CHECK UP: Halloween 2014

Diagnosis: Uveitis and Pauciarticular Juvenile Rheumatoid Arthritis.

Summary of her health issues and current condition: Lucianna started presenting symptoms on June 7, 2012. It occurred one week post a viral infection. It started with a limp and a swollen knee and quickly turned into several affected joints and ultimately, the inability to walk for much of the summer. She has inflammation in both knees, her left wrist, left ankle and possibly her hip. She was on only Naproxen and Zantac through the summer. Her doses were increased over time to the maximum safe dose. On September 9th, I noticed one of her eyes was red/blood shot, almost as if pink-eye was coming...the next morning, it cleared up. That day we also noticed a very subtle "cloudiness" about her eyes. So we made an appt and she was seen the next day. On September 11th she was diagnosed with Uveitis in both eyes, a serious eye disorder where inflammation attacks the eyes. Her Uveitis was considered severe. Immediately, we chose to move forward with a 2nd line of defense: Methotrexate, a very low-dose chemotherapy drug, in addition to the Naproxen and Zantac, an "hourly" steroid drop in each eye along with one nightly dilating drop. She will be monitored on Methotrexate to make sure she has no side effect of liver damage. The drops are not safe for extended use; the risk with them is glaucoma and cataracts - which also cause vision loss. So we are hopeful that she remains side effect-free. Typically it takes a few months for the eyes to get under control with the drops. The addition of Methotrexate should also help her JRA and Uveitis. We are told that her arthritis will become more "quiet" and her Uveitis will be our biggest concern. Currently, she gets around on her own very well. She still has a "wooden legs" appearance at times, but we are grateful that she's mobile. Her eyes are improving and we are officially trying to wean her off the drops. The eye doctor did caution us that each week can bring a new circumstance but so far she is responding to the drops well. We will continue to have frequent appts until she's remained free of inflammation for a while. Once we are able to discontinue drops, there is no guarantee that she will not have re-occurrences. All of these drugs she is on has side effects that would make any parent cringe at the thought of having to give them to their child. Bottom line, we have to do something despite to serious risks of these drugs to keep her from any joint damage or worse, profound vision loss. We will remain strong in our fight against these diseases.

UPDATE: 2/26/13 - Drops discontinued, will be closely monitored for next 2-4 weeks to make sure the inflammation remains at bay.

UPDATE: March 2013: After quiet eyes, on her return check up the inflammation is back. Her Rheum and eye doctor decided to increase the MTX to .5 (her 2nd increase) and see if her eyes inprove after 30 days. At the 30 day mark, we are seeing a Uveitis specialist. Stay tuned.

UPDATE: 4/16/13 - Unfortunately, her left eye is very stubborn and as a result of our appt to see the Uveitis specialist, we need to increase her Methotrexate dose once again. She is now on .6mls.

UPDATE: 5/28/13 & 6/10/13- We are headed back to the eye doctors (earlier than our scheduled appt) as Lucianna is complaining of eye pain. We were scheduled to go back to Dr. D on June 12th, but we are going to see her other pediatric ophthalmologist who is slightly closer to home just to be sure she's okay. It was discovered that Lucianna has a cataract in her left eye, a conditional called Band Kerotopathy (calcium deposits in the eye) and still has inflammation in her left eye. We find out Wednesday, June 12th what our next steps will be. 9 months of this, is absolutely unacceptable to me.

UPDATE: June 12th - Dr. Dunn says that there is still inflammation in her left eye but it's minor. Nonetheless, any inflammation is not good. We have to get it under control. Ideally, you want to have the eyes quiet "without" the use of steroid drops. We have chosen to only use them for a weeks time at the doctors' recommendation, and then he wants us to increase the Methotrexate once again to .7mls. He says we can go up to 1.0 mls. So we have some wiggle room. We are hoping that we don't have to go on a biologic like Humira to get the eye quiet. So fingers are crossed. We go back in 2 months.

UPDATE: 8/22/2013: Left eye is finally at "trace" cells. Sticking with the Curcumin and the MTX at .7 mls. Hopeful we reach quiet at next appt!!

UPDATE: 11/20/2013: Left eye is still at trace but we do have an improvement!!! Very thankful!

UPDATE: April 2014: Since increasing the MTX and adding the herbal supplement, Meriva Curcumin-SR - her eyes are finally inflammation free!

UPDATE: JUNE 2014 - Trace inflammation in left eye. Starting Pred Forte steroid drops again and increasing MTX to .8mls. Joint appt was great, joints are quiet!

UPDATE: JULY 2014 - Eye is once again clear, we can wean drops and continue with the increase in MTX. Next check up - October 2014

UPDATE: OCT 15, 2014 - Left has trace cells. Advised to go on Steroid drops at 1 drop per day for 2 month/until next appt in December.

UPDATE: OCT 30, 2014 - continued "painful eye", after trying allergy lubricating drops we are opting to have her eyes checked again by a local ophthalmologist. Our appt is 10:45am on Halloween. Hoping for nothing scary!

UPDATE: DEC-MAY 2015 - Switched eye doctors in Dec/Jan. Last eye doctor was comfortable with steroid drops, even small amounts and we were not comfortable doing that. Switched from oral MTX to injectable in March and got our first clear eye appt in a long time May 27th, 2015. Very happy!

Love, Lucianna

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Tuesday, December 11, 2012

Jingle Bell Walk & Music to our ears!

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