neurofibromatosis cafe

A place to talk about NF, have fun and share.

SHARING MY MESSAGE FROM TAMMY, LET’S WELCOME OUR NEW FRIEND.

pictures-of-graduation-and-austin024.jpgI received this wonderful message from Tammy. Tammy was nice enough to let me share this message. I am always encouraged when I get messages like I have been getting from you all. It’s good therapy for all us to meet here and support each other in time of need. Oh and not to forget all the fun we lave here, as we learn about NF together. Lets start supporting Tammy and Austin. That’s what we do here right. Maybe we can talk Tammy into send a picture to add with her blog. What do you say Tammy? 🙂 Hope you see you here soon.

Dear Reggie,

My name is Tammy Moreau. When my nephew – Austin – was born back in 1996, my mother noticed a little knot on the outside of his head. She asked the doctor what it was, and they just said, “Scar tissue.” How scar tissue might have been on a newborn, we weren’t sure, but we shook it off.

As Austin aged, we started noticing that the little knot started getting larger. It seemed to be growing down the outside of his head. Mom (ever the caring grandmother) also noticed that he was beginning to get these odd “coffee spots”. Austin’s parents kept asking the doctors about it, and they never knew the answer, or they just shrugged it off. Then….one day we took him to a doctor’s appointment.

The doctor he was seeing just happened to mention that the knot and the coffee spots were symptoms of a disorder called Neurofibromatosis. Such a mouth full! He then referred Austin to an NF doctor in Columbia.

To make a long story short, Austin is turning 11 this year. In his short life, he’s already had 3 big surgeries, and it looks like he’ll have to have a bunch more. The knot followed the grow of the plates in his head, and came down into his eye. Austin also had several tumors inside of his eyelid, in which he had to have debulked at a young age. His left eye started to droop considerably, eventually causing a “deformity”. The doctors told us he had a tumor on his optic nerve, and advised highly against having it removed. They said the chances were quite high that he would go blind and deaf on that side. My brother was terrified and did as the doctors said. Eventually Austin started having horrible headaches and nosebleeds, so we had no other choice but to have the tumor removed.

Good news. They removed 98% of the tumor, and Austin kept his hearing and his eyesight. The downside….he is unable to open his eyelid on that side, due to their having to cut several muscles and nerves. Unfortunately, although he can currently see out that eye (if he holds his eyelid open), he may still lose that eye. Since we followed Doctors orders, the tumor cut off vital nutrients to his eye as it grew larger.

A few months after his surgery on his optic nerve, we found out at a routine dentist appointment that Austin had 2 more tumors…this time in his mouth. He had them removed, and now not even 2 months later, he has another tumor in his mouth.

When it all first started happening, you could tell that it was affecting Austin’s self esteem. You would find him looking into the mirror and just staring at his effected eye. It broke my heart everytime I found him doing that. He has been made fun of several times at school, and I just do not see how he can deal with the cruelty of some children. His brother does seem to defend him quite a bit (Kevin does not have any signs of NF).

I don’t know why I felt it necessary to write you this story, but I felt compelled after seeing your site. I applaud your bravery in dealing with your disorder and trying to educate others about it. I hope one day through your efforts and the efforts of others (CTF, CDC, etc) we can find a cure for NF. I also hope that others can see you and my nephew and all of the other NF suffers as you should be seen, as beautiful people who are the same as all of us on the inside.

Thank you

Tammy

August 26, 2007 - Posted by | Awareness, neurofibromatosis, nf, NF1, NF2 | , , ,

97 Comments »

  1. Tammy,
    Welcome to the blog! Here, you’ll find friendly, compassionate people who have gone through or are going through the journey you are describing with your nephew. Please feel free to use this site as a forum for discussion, information, help or to just forget about the stuff that gets in the way of having a great day.

    Reggie has some videos posted on his blog that might be of value to you and Austin. Dr. Richard Lewis, a noted NF researcher who partnered with Dr. Vic Riccardi in making NF appear on the radar screens of doctors nationwide, was part of a seminar earlier this year and talked about the ocular manifestations of NF. Here is a link to that video.

    He also answers questions at the end of his talk. Here is the link to that.

    In any event, welcome to the blog!
    Lou “Adgiant”

    Comment by adgiant | August 27, 2007 | Reply

  2. HI Tammy

    Comment by Shelley | August 27, 2007 | Reply

  3. I’m sure Tammy will be here before you know it. That is if Lou behave and stop making waves.

    Comment by Reggie Bibbs | August 27, 2007 | Reply

  4. Tammy,
    Ok, I may have spoken too quickly about finding “friendly, compassionate people” on this blog. There is one person that you should avoid completely and that is Reggie. You can’t believe a word he says. But you probably figured that out by now. When you blog, don’t pay any attention to any of Reggie’s comments. It’s for your own good. I’m the one you can trust! Your pal, Lou

    Comment by adgiant | August 27, 2007 | Reply

  5. allright Lou I want to see a pic of Reggie voodoodoll

    Comment by Shelley | August 27, 2007 | Reply

  6. Tammy your nephew is in my thoughts and prayers tell your nephew to not give up

    Comment by Brian | August 27, 2007 | Reply

  7. Hi everyone. Thanks for all of your kind words. I’m going to have to ask permission from my sister in law to post a pic of me and Austin (can’t blame her for wanting to be secure), but I don’t think she’ll have a problem. 🙂

    Comment by Tammy | August 27, 2007 | Reply

  8. Hiya, Tammy! So glad you to see you on the blog. Pull up a chair and make yourself at home. Would love to have Austin visit us if possible so he can talk to others who have gone through what he is experiencing. By the way, what part of the world are you from?

    Comment by adgiant | August 27, 2007 | Reply

  9. I’m from the US. Missouri to be precise. It may be a while before Austin comes to the site, he’s at a weird stage where he *does* want to know more, but in a way doesnt? If that makes any since? He’s in the “I just wanna play” stage. 🙂

    Comment by Tammy | August 27, 2007 | Reply

  10. Hey Reggie check your email. I sent some pics. One of the pics is kinda blurry though, sorry. :-S

    Comment by Tammy | August 27, 2007 | Reply

  11. I guess the best thing is to let him enjoy being a kid. Do you have any NF resources nearby? NF chapters? Support groups?

    Comment by adgiant | August 27, 2007 | Reply

  12. Not that I know of. We live in a small little town of about 2 to 3 thousand. Not much around here. My sister-in-law was talking about eventually taking Austin to a bigger NF camp or something. Like I said, there’s not much around here.

    Comment by Tammy | August 27, 2007 | Reply

  13. Got them. I’m sure I can use them. I mowed the grass and I am so whipped. Man that was some work. I bet I will sleep good tonight. Oh Lou why don’t you stop by and drop off a Shinner.

    Comment by Reggie Bibbs | August 27, 2007 | Reply

  14. Tammy you having fun yet? You are going to have to read all of our blogs so you can see how it gets around here.Only one person to pick on around here. And we know who that is.

    Comment by Reggie Bibbs | August 27, 2007 | Reply

  15. Reggie, was that a freudian slip, “I bet I will sheep good tonight.”

    Comment by adgiant | August 27, 2007 | Reply

  16. Well Lou, what ever are you talking about. 🙂

    Comment by Reggie Bibbs | August 27, 2007 | Reply

  17. I am not exactly sure what encouragement to offer, but I myself have NF1 and am 28 years old. My symptoms are mild in comparison to many but yet still more severe than some. Remember, you and your nephew are not alone. As my NF progresses with age I have learned there are a lot more people out there than I thought that suffer from NF. I used to think I was one of the very few out there.

    p.s. Reggie, I just noticed that “e-mail” is spelled wrong in the leave comment box, or is that the British spelling of mail?

    Comment by Caleb | August 28, 2007 | Reply

  18. Hey there just to let yall know Lou and Reggie need a babysitter to keep them from picking on each other

    Comment by Shelley | August 28, 2007 | Reply

  19. He started it!

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  20. thats right Reggie and very true he started it

    Comment by Brian | August 28, 2007 | Reply

  21. lol.

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  22. ():)

    Comment by Shelley | August 28, 2007 | Reply

  23. Brian, Brian, Brian…and I thought you were a friend! How could you possibly take Reggie’s side on this? He steals pennies from blindmen’s cups!

    Comment by adgiant | August 28, 2007 | Reply

  24. LOL that is funny Lou but I am a friend I care about people thats why I take reggies side because u give him to much of a hard time I like everybody

    Comment by Brian | August 28, 2007 | Reply

  25. I dont believe that he takes pennies he is a good person oh by the way your bibs are ready LOL

    Comment by Brian | August 28, 2007 | Reply

  26. see Reggie now you have Lou picking on me LOL

    Comment by Brian | August 28, 2007 | Reply

  27. AW poor Brian

    Comment by Shelley | August 28, 2007 | Reply

  28. thanks Shelly I appreciate that

    Comment by Brian | August 28, 2007 | Reply

  29. I like everybody too Brian

    Comment by Shelley | August 28, 2007 | Reply

  30. I like everybody too Brian

    Comment by Shelley | August 28, 2007 | Reply

  31. Brian, I will be back on line. Guess what I have to do. That’s right. I have to make a phone call. Every 15 minutes lol

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  32. I bet Tammy is saying to herself right now, “What the heck am I doing on this website!!! I came here for information and support, not to listen to these whiny people talking bad about my good friend, Lou!” I just hope for Tammy’s sake, she’s not listening to this trash-talking!!!

    Comment by adgiant | August 28, 2007 | Reply

  33. Lou Im thinking that now

    Comment by Shelley | August 28, 2007 | Reply

  34. Go for it Reggie

    Comment by Shelley | August 28, 2007 | Reply

  35. Come on Lou. You are the one with the doll.

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  36. Hey Brian, don’t worry about it. I will take care of it. lol

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  37. Just to let yall know Im having the best time on here

    Comment by Shelley | August 28, 2007 | Reply

  38. That is so cool. Support to everyone with NF and having a fun time.

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  39. LOL you guys are hysterical. I think there are devil horns holding up both Lou and Reggie’s halos. 😉

    Comment by Tammy | August 28, 2007 | Reply

  40. True Tammy

    Comment by Shelley | August 28, 2007 | Reply

  41. Tammy, I just want to apologize for subjecting you to this madness. We were assured by the blog people, WordPress, that Shelly and Brian would be unable to login to the blog. Needless to say, a nasty letter is on the way to those WordPress liars right now. The only reason they let Reggie on the blog was because the rest of his family is nice, unlike you-know-who. Hopefully, you’ll get a chance to talk to Eleanor! She’s very nice, intelligent, well-spoken and good-looking. Come to think of it, Eleanor and I have a lot in common!

    Comment by adgiant | August 28, 2007 | Reply

  42. Lou I am not that bad I like everybody just having fun thats all

    Comment by Brian | August 28, 2007 | Reply

  43. Lou you havent met me yet lol

    Comment by Shelley | August 28, 2007 | Reply

  44. Hey there Just wait till I get those bibs on Lou

    Comment by Shelley | August 28, 2007 | Reply

  45. I agree Shelly but I think you may need to hurry if you can LOL

    Comment by Brian | August 28, 2007 | Reply

  46. Brian what do you like to do for fun I love crafts listening to music and giving Lou and Reggie a hard time lol

    Comment by Shelley | August 28, 2007 | Reply

  47. I am restoring a antique John Deere tractor I love tractor shows and stuff like that and I love anything John Deere

    Comment by Brian | August 28, 2007 | Reply

  48. Shoot! See Lou you tarnish my squeaky clean image.

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  49. As Flip Wilson would say. That Lou made me do it.

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  50. Hey Reggie,
    Austin came onto the page today. I guess he didn’t know I sent you a picture, he was enthralled by the fact that his picture was on the internet. But he said hi to everyone.

    Comment by Tammy | August 28, 2007 | Reply

  51. I love to go shopping too

    Comment by Shelley | August 28, 2007 | Reply

  52. Hi Austin. Hope you keep enjoying the photos.

    Oh Lou, you can weak up now. The dream is over. Lou is just made because I’m so popular. Have any body heard of Lou? NOT!!!! LOL

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  53. That Lou is trouble! But, then so is Reggie 😉 Austin, you are a doll! Hang in there buddy – you, too, can be silly on the blog…..

    Comment by Diane | August 28, 2007 | Reply

  54. Hey Brian Lou is having fun like us. He is just like a seal, just give him a fish, or BEER, he will settle down. 🙂

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  55. Believe me you will say, is that what I waited for.

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  56. What squeaky clean image Reggie

    Comment by Shelley | August 28, 2007 | Reply

  57. Yea and make it pink or yellow.

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  58. Yea I know. That is your purpose in life right? lol Mose so for Lou.

    Comment by Reggie Bibbs | August 28, 2007 | Reply

  59. On a serious note,
    My sister in law is wanting to start a webpage/myspace page for Neurofibromatosis and Autism. My little nephew, Jonathon, has autism. She wanted to know if there’s anyplace on the web that sells awareness items for NF, like Reggie’s shirts and CTFs bracelets. She wants to put a link to all sorts of resources like that, and information. What should I recommend for her?

    Comment by Tammy | August 28, 2007 | Reply

  60. Tammy, post the myspace link when she gets it posted and I will add her as a friend.

    Comment by Caleb | August 29, 2007 | Reply

  61. That’s great! Here’s a link to Gillian Anderson’s store with all proceeds benefiting NF, Inc. Gillian was on the X-Files.
    http://www.cafepress.com/gaws

    Comment by adgiant | August 29, 2007 | Reply

  62. Tammy that is a good idea. I think adgiant has a link that may be of help to you.

    Comment by Reggie Bibbs | August 29, 2007 | Reply

  63. Here’s a link to the Texas NF Foundation’s fundraising webpage.
    http://www.texasnf.org/events.php

    Comment by adgiant | August 29, 2007 | Reply

  64. Lou did you get a picture of your Reggie doll yet

    Comment by Shelley | August 29, 2007 | Reply

  65. whats up Shelly

    Comment by Brian | August 29, 2007 | Reply

  66. Shelly, take a real good look at the homepage of Reggie’s blog.

    Comment by adgiant | August 29, 2007 | Reply

  67. whats up Lou how are you today

    Comment by Brian | August 29, 2007 | Reply

  68. Hey Brian,
    don’t conspire with HIM! LOL

    Comment by Reggie Bibbs | August 29, 2007 | Reply

  69. I’m feeling great!!! Just stuck a few new pins in Reggie’s voodoo doll and that really put a smile on my face!!! How are you doing, Brian? When are you going to send us a photo of that John Deere tractor you’re restoring> Would love to see it.

    Comment by adgiant | August 29, 2007 | Reply

  70. Hey Brian that is the only since able thing Lou has said today, when are you going to send a picture of that tractor. That is a good idea. maybe you would like to let us see it when you finish it.

    Comment by Reggie Bibbs | August 29, 2007 | Reply

  71. LOL! I just saw you. So Lou wants to play hard ball. Don’t make me talk, Lou.

    Comment by Reggie Bibbs | August 29, 2007 | Reply

  72. I am thinking about making me a website and a picture of my tractor will be there I could also post one on the blog but to be honest its a little ugly right now I really want to wait till i get it at least painted before I post a picture I am telling you its ugly right now and some parts are taken off of it so its not worth seeing right now

    Comment by Brian | August 29, 2007 | Reply

  73. Hey guys..I have been so pressed for time that I have been missing a lot of good stuff here…my apologies!

    Tammy, I am so glad that you posted here and that we can all join you in faith and prayers for your sweet nephew. I haven’t read all the comments here but am sure these guys are doing much to lift your spirits.

    Comment by Eleanor | August 29, 2007 | Reply

  74. Lord have mercy on us the doll is too funny and i know i need new glasseses

    Comment by Shelley | August 29, 2007 | Reply

  75. Im good thanx Brian

    Comment by Shelley | August 29, 2007 | Reply

  76. I didn’t see it until Eleanor told you to look at it. That’s ok. You know what they say about payback. Get ready its going to be a big one too. We will see who is laughing.

    Comment by Reggie Bibbs | August 29, 2007 | Reply

  77. Im wondering what I got myself into by joining this blog

    Comment by Shelley | August 29, 2007 | Reply

  78. It gets really crazy around here.

    Comment by Reggie Bibbs | August 29, 2007 | Reply

  79. Lou my mom saw the doll she thought it was funny

    Comment by Shelley | August 29, 2007 | Reply

  80. Hey Tammie in response to comment 59…I would go to myspace and click around reggies or search for NF I have gotten a bunch of free stuff on there. I would be happy to send you the codes for a few things. Look for me on myspace.

    Comment by Eleanor | August 29, 2007 | Reply

  81. We’re going to add a small detail to the doll tomorrow.

    Comment by adgiant | August 29, 2007 | Reply

  82. COOL

    Comment by Shelley | August 29, 2007 | Reply

  83. Don’t get me started.

    Comment by Reggie Bibbs | August 29, 2007 | Reply

  84. OKKKKKKK

    Comment by Shelley | August 29, 2007 | Reply

  85. The doll looks the same…I’ve had a few days off here and this is no time for you guys to take a break…I’m bored!

    Comment by Eleanor | August 30, 2007 | Reply

  86. oh Eleanor I dont think there is ever a break they will be back crankin em up again soon I bet

    Comment by Brian | August 30, 2007 | Reply

  87. yeah to you both

    Comment by Shelley | August 30, 2007 | Reply

  88. Hi everybody

    Comment by Shelley | August 30, 2007 | Reply

  89. hey Shelley how are you

    Comment by Brian | August 30, 2007 | Reply

  90. Im fine you Brian

    Comment by Shelley | August 30, 2007 | Reply

  91. Ok I found out that my sister-in-law is making a page on Squidoo, whatever that is?? it’s at

    http://www.squidoo.com/strong_kids/

    It doesn’t appear she’s done much yet. I know she’s just learning, so we’ll see what she does. I think Squidoo is some site to raise money for your charity or something.

    Her myspace profile is ‘strong kids’. I know she’s wanting me to scan some pictures and do some stuff for her, but that’s the url and profile for what she’s doing.

    🙂

    Comment by Tammy | August 31, 2007 | Reply

  92. I don’t know if anyone still looks at this post, but to give you an update, Austin’s tumor on his optic nerve is back. Kinda hard to deal with. 😦

    Comment by Tammy | October 22, 2007 | Reply

  93. I till keep Austin in my prayers. So Its the Optic nerve? I will have to Let my Church know it is the tumor on his Optic nerve.

    Comment by Reggie Bibbs | October 23, 2007 | Reply

  94. Yeah, he’s got the big one on his optic nerve, and now he has another one in his jaw. From what I understand, if he gets hit in his jaw (any small amount of force) would shatter his jaw…so I guess it’s working on his bone now. And, it looks like he’s getting some on the outside of the left side of his head. He’s never had any that were visible, it was all internal. It seems like it’s all speeding up. 😦

    Comment by Tammy | October 26, 2007 | Reply

  95. What are the doctors saying? Prayers are going out for you and Austin. You are loved and I hope the best. Keep filling me in here or direct email. Your friend for ever

    Reggie

    Comment by Reggie Bibbs | October 26, 2007 | Reply

  96. He’s going to go for another MRI here soon (I forgot the date….oops) at Cardinal Glennon Hospital in St. Louis. They’re being nice enough to pay for my brother and Austin’s food, the hotel to stay in, and transportation. Very nice. Until then, we’re not sure what’s going on. I’ll keep you updated.

    Comment by Tammy | October 26, 2007 | Reply

  97. Hi Tammy,

    Thank you so much for the up dates. That is good news about the hotel transportation and food. That is something you don’t have to worry about. I will keep praying for Austin. Let him know hes friends from Houston are thinking about him. You can email me direct as well. Thank you for letting me be involved as a support. Stay happy

    Reggie

    Comment by Reggie Bibbs | October 27, 2007 | Reply


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