One year (in September) no medications other than xibrom-
and she is still quiet and in durable remission. When Dr. Foster reviewed her history and chart with the fellows, he said that Alexa's case illustrates the fact that no two uveitis patients (in this case it began with pars planitis) are treated alike. He commented on how many meds she failed before finding the right one, and how it took not one, but three vitrectomies along with cyropexy and endolasers, yag's, and cataract removals to get to the place where she is at now. He said we did not give up, but I have to tell you what kept us going is Dr. Foster's committment (to all of his patients) that he will NEVER give up on them!
We do not go back for an entire year! I can't even believe we have reached this point. I remember in the beginning he told me it would be every 6 weeks, than 3 months, then when she was stable and in a very good place, every 6 months until finally it would be once a year. He warned me how long that it could take. Oh my goodness, I can't even tell you how much I felt the weight of the world had been lifted, and I didn't even realize that I was carrying it around until that very moment when he told us the great news. Needless to say we had some serious celebrating to do.
We got to spend the day with Lisa and Lauryn from Georgia, and what a special time that was. Lauryn (8 yrs old) and Alexa bonded immediately, and held hands and went wading at Frog Pond together. Lauryn spoke privately with her about how people try to make her feel like a freak because of her eyes, but she knows that everybody has problems. Those mean people just don't realize what theirs is yet! Alexa gave her lots of hugs, and at the end of the day, both of them had tears in their eyes when it was time to go our seperate ways. We hope to see them again next year.
Kudo's to Dr. Foster and his committment in educating all of us (parents, patients, fellows, anyone willing to read this site) what it takes to win this fight against uveitis. Extra special hugs and gratitude to Liz (webmaster) and all of the moderators, webteam, who keep this online support group going. It has helped so many families, including mine, but also a loving way to reach out and help others that are going through the battle now. I am always so honored when I can meet new families and help them in anyway possible, showing them around Boston, listening, sharing war stories, or simply sharing a few margarita's with!! Wooo hooo!
Keep of the fight and NEVER give up!
Renee' & Alexa
Re: One year (in September) no medications other than xibro
WooHoo!!!! & Congrats- keep up the good work. Your success is the hope that we all hold onto in the tough times!
Re: Re: One year (in September) no medications other than x
I am so happy for you and your daughter. I also appreciate
all the support you have given me. We go to see Dr. Foster for the first time this Thursday. I am nervous and excited. A friend of mine
and her son are coming along with us on our trip so
we wouldn't be alone. Isn't that great! I can only hope
that eventually we'll be in durable remission! That is
what I dream of every day. You and your daughter give
me so much hope. Thank you.
Re: Re: One year (in September) no medications other than x
Renee I am so happy for Alexa! Your note made me cry. It is what all of us parents are waiting to hear. I sent you an e-mail last week, I was dying to know how Alexa's appointment went. We will be back in Boston next month, the 18th of September. We will be just missing the walk, but we could not work it for the following weekend, just too many school things going on. Give Alexa a big hug for us and we are celebrating with you!
Re: One year (in September) no medications other than xibro
That was such a wonderful post Renee and I am sure that it was a joy to write! It is through the tenacity of parents and kids that make the "Dr. Foster" effect come true. Enjoy a fantastic summer and it is so great to hear that there is an "end to the roller coaster"!
Re: One year (in September) no medications other than xibro
Will do, we are going to be there in the morning.
Hoping for nice weather since I've never been to Boston and
looking forward to sightseeing some.
Re: One year (in September) no medications other than xibro
Huge congrats to you and Alexa - what an incredible milestone you've reached! Thanks for all you do for all of us who are following your family down the path toward durable remission - your advice, steadying reassurance, and most importantly postings about Alexa's success.
It's especially wonderful to hear how Alexa could help reassure Lauryn - my Emma met Lauryn, Nia, and many others at the pediatric conference last year. It was so exciting for her to realize that there were other kids who dealt with the same issues she did. Alexa is a great example of how to live with uveitis and conquer it!
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