Taylor Update--The Bad News

[Larry]

Kathy,

Sorry for coming in late.

As I'm in the regrowth category, i can empathise with taylor. She has been through too much at her age and now this. She will no doubt be bitter and angry but the best thing is to assure her that you are there for her (as I know you are). Medically, there isn't much that you can do but it's the love and affection and friendship that taylor will appreciate the most.

On the technical side, unless the re-growth is causing an issue or is dangerously positioned, you may be able to wait and watch. I'm in that camp. My regrowth is 19mm and i'm not touching it. They are very slow growing as a rule.

Don't be too hasty for further treatment if taylor can handle the emotion of the re-growth in her head. If she just wants to get rid of the growth then by all means, zap it.

It will be a tough ride for a little while longer yet and remember that we are here for cyber support.

Actually, it may help taylor to write about it to us and she can be as angry as she likes. Venting might help her.

Give Taylor our best wishes.


Laz

[robynabc]

HI,

I am sorry to be coming in here late.   I am sorry to hear about this.  The good news is that because they are keeping an eye on it and it can be done without surgery.  I am not going to lie.  This scares me more than you know.  Eric's last MRI showed possible scar tissue too.  I think he is going to have another MRI soon because he has been having face pain.  You know my prayers are with you guys.  This sucks for everyone but especially these young kids.  Eric is still having coughing issues.  He was so excited about a new job but worries about his coughing.  So far they have been really good about it. 

Hi to Michelle too.  Haven't seen you for a while.  Hope Chelsea is doing well too.  The only thing I think of is Why ask why? There is no way to know. 

 I am so proud of these kids they are amazing and yours too will get through this. 


Love,

Robyn

[Kate B]

Hi again,
 It is still very small.  We meet with her surgeon to discuss it on Thursday.     Kathy

How did it go with the doctor visit? 


Thinking of you.
Kate

[TaylorsMom]

Hi all,

   Her regrowth is about 3mm x 5mm.  When she found out about the halo used with GK she said she really didn't care if she got GK or CK.  I guess after all she's been through the halo sounded like a minor thing.  She'll probably still have it done over Christmas break.  Right now I think she's trying to concentrate on college and pretend there's nothing wrong.  We'll see how she feels about it as the treatment gets closer.  I feel a little guilty saying I'm happy to be an empty-nester.  I need a break as I am her favorite dumpee for all her frustrations.

   Thanks to all,

   Kathy

   

[Brendalu]

Kathy,

I hope you can have some quality "me" time.  I also hope that Taylor has a successful semester in school.  You deserve a break.  I wish Taylor only the best.
Brenda

[lori67]

Taylor sounds like such an amazing girl!  I'm glad she's able to focus on school and being a normal college student.

You shouldn't feel guilty at all - this has got to be hardest on you!  I can't imagine having to watch my child have to go through these things.  I'd gladly have it be me anyday.  Besides, if your daughter is anything like my oldest, just because she can't dump her frustrations on me in person, doesn't mean she can't do it by phone or e-mail!  Enjoy the break for a little while!

Lori

[ppearl214]

Kathy,

It's not often I agree with .... lori! .... but Taylor just absolutely keeps me in awe!  As for you...... you do what you need to do to regain some mental/physical strength. No guilts about her being at school. My thoughts... go book a medi/pedi and pamper yourself! You have certainly earned it!

hang tough and thank you for this update.

xo
Phyl

[jazzfunkanne]

how old is taylor?

[lori67]

Aw, Phyl... it's not often ANYONE agrees with me!   

Lori

[nancyann]

Kathy & Taylor:   I also feel awful about the news -    Best wishes though on the (probable) CK.   You guys are in my prayers.

Always good thoughts,   Nancy

[TaylorsMom]

Anne,

   Taylor is 20.  Her birthday is in March.  She was diagnosed in January, 06 with a 4.8cm, right-side.  After 5 weeks in the hospital, she came home with a walker.  It was the day before her 18th birthday.

    I have wished many times I was the one with the AN and not her.   She is stubborn as a mule and doesn't always do the right thing but she has not given up on the rest of her life.   I know if it had been me at the same age as her, I wouldn't have handled it as well as she has.  Probably not even close.

   Kathy

   

[robynabc]

Hi Kathy,

I am the mother of a teenage, college, 4.5+ CM AN survivor also.  I am sorry this happened.  Eric was also told on his last MRI that there may be some scar tissue.  I am right there with you.  I just know that she is going to be fine.  I am thinking of you both.  You are right these kids are amazing.  I too wish I was the one with the AN.  And give yourself some credit.  Your couragous daughter handled this amazingly and part of that was because she had the support of her mother who has been right there with her.  I know Eric understands that sometimes and he vents with me too.  It is almost harder being the one who watches.  No offense to you guys but it is hard at times.  And it would have been hard for her to watch you go through it too.

I still don't know how I made it through that 13 hour surgery and the aftermath.   

Peace and Love,

Robyn

[chelsmom]

Hi Kathy and Robyn,

I agree with you both that it is as difficult watching your child go through this as it is to have an AN yourself.  Kathy, I think you'll be amazed how well Taylor will do being amoungst all her peers away at school.  Her frustrations will probably change and be more about her classmates, professors, and roommates than herself.  When Chelsea went to live in the dorms last spring she was thrilled.  She learned her limits really fast and at times came home to get some TLC and rest.  It is great being an empty nester.  I don't feel quilty at all.  There is always going to be a need for a shoulder to cry on and this is true with any child with or without an AN.  Our kids just get extra sympathy, as they should, because of all the additional trials they have gone through and will go through for the rest of their lives.  We know that this is never going to go away. 

She now has moved into a large house with 5 other girls, 2 undergrads and 3 in grad school, and she loves it.  Today was her first day of school (second year), she works part time and coaches a girls 12 year old AYSO soccer team.  I encourage her to do everything and anything she can physically and emotionally handle. To live each day to the fullest and appreciate every minute of it. 

I know Taylor is going be great.  These kids are fighters. 

Robyn, I'm sorry to hear Eric is still having coughing fits.  Chle's gets those too although not as often as she once did.  She is going to see her surgeon that did her vocal cord surgery in a few weeks for a follow-up.  If I learn anything new about this problem I'll let you know.  Has Eric seen anyone else for a second opinion? 

You Mom's stay strong.  We have to be there to bolster them when needed.

Take care,

Michelle

[Omaschwannoma]

Taylor and Mom,

I am humbled by both of your stories, Taylor's for her enduring the AN and all that comes with it and Mom for yours as watching your child deal with serious troubles such as an AN makes it doubly difficult.  We don't want any hurt to come their way, we try to prepare them for "the worst case scenarios", but then the "curve ball" comes their way. 

Mom, ti sounds as though you have done an awsome job teaching her "life lessons" as her attitude toward deciding GK or CK sounds positive.  And the fact she "dumps" on you says you've done a great job as she feels that comfortable with you!  Yes, Taylor could've given up, but she heard your words somewhere down the road and put them into practice.

Taylor, I am awed by you as you are young to be dealing with this, in college forging ahead with your future says you look ahead to a bright future for yourself.  May you have death to your tumor!  May you have good health, may you have peace, may you have love, and may you have a long, long successful life! 

[lori67]

Robyn,

You don't have to worry about offending "the rest of us".  I think we can all agree that we'd rather be the one dealing with this than the one having to watch your child go through it.  You guys have the hardest job.  Hopefully everyone going though this has someone by their side to be as supportive as you Moms have been to your kids.

Lori