Update

[Guest guest]

Thank God!!!

KathyR

-------------- Original message ----------------------

From: Carol in IL <ps1272000@...>

>

>

>

> 20

> October 25, 2007 at 05:41 PM CDT

>

>

> HI

> EVERYONE, WE ARE OVERWHELMED WITH EMOTION-TAYLOR IS DOING VERY WELL. WE

> ARRIVED AT THE HOSPITAL AT 4:45 AM TODAY. TAYLOR WAS ALL SMILES GOING

> INTO HER MRI WITH CONTRAST BEFORE SURGERY. WITH JUST A FEW TEARS

> INBETWEEN WHILE BEING STUCK WITH NEEDLES YET AGAIN FOR BLOOD DRAWS.

> THEY TOOK HER DOWN AT 7:OO AM FOR THE MRI WHICH WAS DONE IN THE OR

> ITSELF AND THEY STARTED SURGERY ABOUT 9:00 AM. THE SURGERY LASTED ABOUT

> 2 1/2 HOURS TOTAL. THE FIRST 2 SURGEONS {THERE WERE 5 TOTAL} CAME OUT

> AND TOLD US THAT IT HAD GONE WELL AND THAT THEY WERE ABLE TO REMOVE

> MORE OF THE TUMOR THAN THEY THOUGHT THEY WOULD BE ABLE TO. WE THEN

> WAITED FOR TAYLOR TO HAVE ANOTHER MRI IN THE OR AFTER SURGERY. DR.

> SPETZLER MET US AND TOLD US THAT IT WAS DEFINATELY BENIGN AND YOU COULD

> NO LONGER SEE THE TUMOR ON THE MRI!!! OUR MIRACLE HAS HAPPENED!!!!

> THERE ARE STILL TUMOR CELLS LEFT BEHIND BECAUSE IT'S IMPOSSIBLE TO

> REMOVE ALL OF THEM. HE SAID THAT HE WILL KEEP A CLOSE EYE ON HER FOR A

> LONG TIME TO COME. THESE NEXT COUPLE OF DAYS WILL BE TOUCH AND GO DUE

> TO A MULTITUDE OF COMPLICATIONS THAT CAN HAPPEN, BUT FOR RIGHT NOW, WE

> ARE NOT FOCUSING ON THOSE. WE ARE TRUELY BLESSED TO STILL HAVE HER AND

> THAT IS WHAT WE ARE PUTTING ALL OF OUR ENERGY INTO AND TAKING THINGS

> HOUR BY HOUR AND AS THEY COME. WE HAVE OUR ANGEL WITH US TODAY BECAUSE

> OF TWO THING; 1= DR. SPETZLER SAID YES!!!!!!! AND 2= TAYLOR'S ABILITY

> TO FIGHT SO HARD TO LIVE. PLEASE KEEP PRAYING FOR ANGEL, NOW THERE IS

> LIGHT AT THE END OF OUR ONCE DARK TUNNEL.LOVE, JEFF, LAURIE AND BLAKE

>

>

>

>

>

>

> Carol in IL

>

> AIM doihavtasay1 GigaTribe doihavtasay

> Mom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma,

> subglottal stenosis, and DS.

>

> My problem is not how I look. It's how you see me.

>

>

> Join our Down Syndrome information group -

> Down Syndrome Treatment/

>

> Listen to oldest dd's music http://www.myspace.com/vennamusic

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Merissa,

I wish I would have had a chance to read this yesterday, but we had a very bad wind storm and loss of hydro. I would have been able to let you know that having the chest tube out isn't even painful at all! It's more painful laying on the left side for the Doctor to pull it out. It's been a month since my esophagectomy and I am still very tender in that area. will probably tell you the tape is extremely tight after the tube is out. That is still fresh in my memory. I felt like my ribs were being crushed! After the chest tube is out, will be taking many walks around the hallways to prevent pneumonia. I thought I was perfectly fine, but still coughed up a lot of phlegm after walking. As for the feeding tube, I didn't have to use it, I just flushed it a few times a day with room temperature water. (The feeding tube removal is not painful either and his Doctor will take it out right at his three week appointment in the office). Please tell to flush it very slowly and not to use warm or cold water as it shocks the system and he'll get diarrhea. Also, please ask him to eat the least amount of sugar as possible for the same reason. I found that out the hard way. I also wanted to ask you to pick up some scar cream for 's neck incision. (You don't realize how often you move your neck until you have a healing incision that is constantly pulling). I was using Cortate cream at first before switching to Scar Zone cream. It gives a lot of relief and 's incisions won't feel so tight. Also, please tell not to be a "tough guy". Accept the prescription for whatever painkillers are offered. I was on Tramacet for 12 days after I came home. There are still times I wish I had something stronger than Tylenol. Well, this was meant to be "helpful hints" and I certainly didn't mean it to come across as a lecture! lol Just give him my best and if he has any questions, I would be happy to help in any way I can.

All the best to you and your family,

achalasia From: mt4mar@...Date: Sun, 4 Nov 2007 06:14:34 -0800Subject: update

He is doing great! He is down from 6 tubes to 2 now. He has a little pocket of air on his side. They hope the chest tube pulls it out soon...Other then that, he has a barium swallow tomorrow, and that will determine if he gets to go home on Wednesday. He will get the chest tube out on Tuesday, and he will go home with a feeding tube for 3 weeks. Will let you know more as I find out....

Merissa __________________________________________________

[Guest guest]

See what's new at AOL.com and Make AOL Your Homepage.

Everyone,

Ohio State kicked a field goal for me Wednesday! Lu and I went to Columbus Tuesday for the first of the 24 actual treatments - the treatment was on Wednesday and went extremely well - only a couple of minor side effects - I am extremely blessed to be able to participate in this clinical trial - the oncologist told me that this trials is the one they are taking to the FDA for final approval of the protocol.

We returned to Atlanta Thursday afternoon.

Next week we go up again - it's four weeks on and then two weeks rest until next June. Thus please keep the prayers of petition for continued results and gratitude for success going!!!

crsSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Praying for you and continued success! Keep us posted! God Bless, Debbie Light www.cllcfriends.com jb50192@... wrote: See what's new at AOL.com and Make AOL Your Homepage. From: CRStearns@...Date: Fri, 9 Nov 2007 15:37:12 ESTSubject: updateaangle@... Everyone, Ohio State kicked a field goal for me Wednesday! Lu and I went to Columbus Tuesday for the first of the 24 actual treatments - the treatment was on Wednesday and went extremely well - only a couple of minor side effects - I am extremely blessed to be able to participate in this clinical trial - the oncologist told me that this trials is the one they are taking to the FDA for final approval of the

protocol. We returned to Atlanta Thursday afternoon. Next week we go up again - it's four weeks on and then two weeks rest until next June. Thus please keep the prayers of petition for continued results and gratitude for success going!!! crs See what's new at AOL.com and Make AOL Your Homepage.I can only Imagine

!!!!! Deb __________________________________________________

[Guest guest]

Im glad to hear he is home and I KNOW YOU GUYS ARE GLAD TO BE HOME!!

I cant wait to hear from him when he feels up to it.

Hugs-Tonia

>

> After 12 days he is finally home. He should be able to catch up on

e-mails tomorrow.

>

> Merissa

>

> __________________________________________________

>

[Guest guest]

Dear : Glad to hear that everything went well for you on your first infusion of Flavopiridol. I presume they do the same protocol, Tuesday in the hospital for hydration, treatment on Wednesday, and discharged from the hospital on Thursday. Did you have a quick response? The lymph nodes underneath my arms shrunk almost in half after my first infusion. Again, congratulations on your first treatment. Thanks for keeping us posted, and like all patients, your in my prayers and thoughts. Keep up the good work. Pete Fritsch Diagnosised 1/15/2002 Wait and Watch 7/15/2002 Rituxan 6 treatments Rituxan and Fludarabine 10 treatments Campath 36 treatments Flavopiridol 24 treatments Flavopiridol

24 treatments (higher dosage) 17-AAG Cancelled Rituxan 12 treatments GRN163L Denied Campath 15 treatments June 19, 2007 to November 17, 2007 no treatments jb50192@... wrote: See what's new at AOL.com and Make AOL Your Homepage. From: CRStearns@...Date: Fri, 9 Nov 2007 15:37:12 ESTSubject: updateaangle@... Everyone, Ohio State kicked a field goal for me Wednesday! Lu and I went to Columbus

Tuesday for the first of the 24 actual treatments - the treatment was on Wednesday and went extremely well - only a couple of minor side effects - I am extremely blessed to be able to participate in this clinical trial - the oncologist told me that this trials is the one they are taking to the FDA for final approval of the protocol. We returned to Atlanta Thursday afternoon. Next week we go up again - it's four weeks on and then two weeks rest until next June. Thus please keep the prayers of petition for continued results and gratitude for success going!!! crs See what's new at AOL.com and Make AOL Your Homepage. __________________________________________________

[Guest guest]

Glad to hear he's back home, I hope is doing well and look forward to his first post -ectomy post.

Love,

Isabella

update

After 12 days he is finally home. He should be able to catch up on e-mails tomorrow.

Merissa____________ _________ _________ _________ _________ __

[Guest guest]

Hi Merissa

Glad that he is home now he must have been pretty fed up in hospital all that time please give him my love and I will catch up with him real soon.

Tell him to rest and not start moving trampolines in the garden again!!!!!

Love

Pippa x

[Guest guest]

Dear Merissa, Thank you for keeping in touch with the Group over this time. I appreciate that you must have had a lot of communicating to do, on top of looking after the Children, all the work you have had to do and worrying about as well. He and you all have been on my mind every day for the last fortnight and I am glad to hear that he has been able to come home at last. Please give him my love and I look forward to seeing his name appear on the Board again when he feels up to it. Take care of yourself and your lovely family. Big Hugs from Ann (England) XXX Mueller IV <mt4mar@...> wrote: After 12 days he is finally home. He should be able to catch up on e-mails tomorrow. Merissa__________________________________________________

[Guest guest]

Dear Marie,

I am so sorry about your Mom.

Do they have any statistics on how long she would live without the

surgery or the chemo protocol? How long with just the chemo? And what

quality of life would she have with chemo (going to the hospital,

exhausted afterward etc.)? And what quality of life would she have

without any treatment at all except for pain management? When you

have all the information specific to her age group and gender, you

will then be able to help your Mom make a decision. This definitely

must be discussed with her and be her decision.

If we had complete information as to what would be involved in my

husband's bone marrow transplant, I doubt that we would have gone

through with it. We made a decision based on emotion instead of

factual data. Our families were even more emotional than us and we

had really no one to lean on or advocate for us.

Usually it is one person in each family that is the strongest and

everyone looks to them for support, notwithstanding that they have

their own need for support. It never fails, the " chosen " family member

could literally be on their deathbed and the rest of the family would

keep asking for their help!

As for your insensitive family members... we all have them... you are

not alone!

My in-laws became such an emotional drain that I needed to break away

from them completely. But, you may not have to... maybe writing them a

letter as to everything that concerns you would help... but don't mail

it. Reread it. Have your husband read it. Then put it away. When you

see each other again, perhaps you could pull that letter out and read

it. If it is still appropriate, I would read the letter to them face

to face so that everything would be out in the open without the anger.

You may not have broken down under different circumstances. They may

have been that proverbial " straw that broke the camel's back " during

this difficult time for you... especially during this time of year

when everybody's fantasy seems to be a picture perfect holiday!

The crying probably helped cleanse your body of the overload of

emotions you were carrying. You may need to take extra time for

" yourself " so your body can de-stress every so often.

Take care,

Holly

>

>

> Thanks to Ellen for holding down the fort while Laurie and I take care

> of things around our homes--most have nothing to do with our kids. I

> have been trying to keep up but several times, I just haven't had the

> energy to post. I am posting today because I NEED you to at least tell

> me I'm not crazy, and possible giving me some suggestions.

>

> First, the reason I've been away is my mother--after being cancer free

> for 6 years, 9 months, her colon cancer has reoccured. We've been

> around for second opinions and, because she is 80 and they don't feel

> she could handle the heroric operation it would take to remove it all,

> it is inoperable. The big deal guy at Northwestern told us he

> recommends a course of chemo and RT (a specialized RT--IMRT). I've been

> appointed " grand poobah " --since I've handled all sorts of things because

> of and have now fought with her GP, her oncologist (Chuck has

> done most with him because he's the doctor)and have most of the family

> call me, since Mom doesn't want my Dad to deal with anyone--it's hard

> enough for him! These past few weeks have been surreal, since Mom is

> healthy--except for that speck of cancer--and cheerful and doing very

> well. I don't think she realizes what NOT having the surgery means and

> I'm not going to tell her, at least not yet. Christmas Eve was

> unnaturally happy, including all us kids giving my parents a new, flat

> screen TV--Mom always comes home from chemo/RT exhausted and watches her

> favorite food shows and Jeopardy and we thought it would be a treat for

> them both.

>

> I was not able to attend holidays with my In-laws so we decided to have

> a low key get together yesterday. Included was Chuck's brother, the

> parent of almost four year old twins, the little boy being dx-ed on the

> spectrum last year. He has big language problems but socially seems

> fine. The problem was my BIL and the mother of the children (they're

> not married) wouldn't speak to me. Russ did very well but still had a

> few " autism moments " . Being in his own home, amoung family, I thought

> Russ did well--we can't hide his autism and since Russ is 27 years old,

> this is no secret. It was so obvious they were snubbing me and so

> hurtful. When they left, Chuck told me he thought they weren't prepared

> to see someone as involved as Russ and just not as tough as we are. So,

> I asked my husband, are we not to take to family events so they

> won't see the " worst case'? Are we suppose to hide him away? Do we not

> see them when they come in from California? Russ is actually not the

> the " worst case " , since he is very healthy, with a few behaviors but he

> is nonverbal and DD but very talented in many ways. They thing is, we

> handle things they have no concept of and don't want to see as their

> future . We are a success because we are still together, our family

> (our other sons and C and I)is very strong and we are able to work

> together. Instead of being afraid, can't they see we are a testament to

> the human spirit--not matter what happens, you can be successful?

>

> I have dealth with this kind of behavior from parents of young children

> but never from family. I am very fragile because of my Mom's situation

> and this just makes it worse. I have been sobbing almost since they

> left last night. I cannot believe this.

>

> Every once in a while, I am hit with some new, crazy situation I have

> not seen coming. Sorry about this but what to do?

>

> Marie

>

>

>

>

[Guest guest]

Thanks for your words, Holly. Mom's situation is " picture book " for

her type of rectal cancer. We have been given no stats for the

chemo & RT, however, the operation that would have to be done is

done rarely in anyone over the age of 60. They do it at Sloan-

Kettering and the stats for that are 20% success rate--that's right,

80% failure. Our Northwestern guy will not do it, so Mom does not

have a choice, at least, in Chicago. There is a real chance of

ending up in a wheelchair with surgery and Mom is busy, active and

bright so that prospect doesn't appeal. My husband is actually a

surgeon and he thinks it would be foolish for us to pursue Sloan-

Kettering. Because all this has happened between Thanksgiving and

the winter holidays, it has been difficult to get answers in a

timely way. Her chemo guy has claimed she received too much RT for

her original cnacer to begin this new protocol so we are waiting for

another " super specialist " to return from vacation. Perhaps he will

give us some stats or at least tell us how long she has. If you saw

her, you would not think anything is wrong.

I know we all have had to deal with family issues, but I thought

most of ours were behind us. And you are right, the strong ones

could be dragging along and we would still be expected to handle

it. My dear friend, Ellen, told me off line I should be " flattered "

for being the grand poohbah and in some ways, I am. But when I got

five calls from relatives in the space of one afternoon, it was not

so great!

Thank you and thank all of you for being understanding for my

absence. Wish I was on the beach somewhere, sipping a drink with an

umbrella, reading a trashy novel--like it could happen.

Marie

> >

> >

> > Thanks to Ellen for holding down the fort while Laurie and I

take care

> > of things around our homes--most have nothing to do with our

kids. I

> > have been trying to keep up but several times, I just haven't

had the

> > energy to post. I am posting today because I NEED you to at

least tell

> > me I'm not crazy, and possible giving me some suggestions.

> >

> > First, the reason I've been away is my mother--after being

cancer free

> > for 6 years, 9 months, her colon cancer has reoccured. We've

been

> > around for second opinions and, because she is 80 and they don't

feel

> > she could handle the heroric operation it would take to remove

it all,

> > it is inoperable. The big deal guy at Northwestern told us he

> > recommends a course of chemo and RT (a specialized RT--IMRT).

I've been

> > appointed " grand poobah " --since I've handled all sorts of things

because

> > of and have now fought with her GP, her oncologist

(Chuck has

> > done most with him because he's the doctor)and have most of the

family

> > call me, since Mom doesn't want my Dad to deal with anyone--it's

hard

> > enough for him! These past few weeks have been surreal, since

Mom is

> > healthy--except for that speck of cancer--and cheerful and doing

very

> > well. I don't think she realizes what NOT having the surgery

means and

> > I'm not going to tell her, at least not yet. Christmas Eve was

> > unnaturally happy, including all us kids giving my parents a

new, flat

> > screen TV--Mom always comes home from chemo/RT exhausted and

watches her

> > favorite food shows and Jeopardy and we thought it would be a

treat for

> > them both.

> >

> > I was not able to attend holidays with my In-laws so we decided

to have

> > a low key get together yesterday. Included was Chuck's brother,

the

> > parent of almost four year old twins, the little boy being dx-ed

on the

> > spectrum last year. He has big language problems but socially

seems

> > fine. The problem was my BIL and the mother of the children

(they're

> > not married) wouldn't speak to me. Russ did very well but still

had a

> > few " autism moments " . Being in his own home, amoung family, I

thought

> > Russ did well--we can't hide his autism and since Russ is 27

years old,

> > this is no secret. It was so obvious they were snubbing me and

so

> > hurtful. When they left, Chuck told me he thought they weren't

prepared

> > to see someone as involved as Russ and just not as tough as we

are. So,

> > I asked my husband, are we not to take to family events

so they

> > won't see the " worst case'? Are we suppose to hide him away?

Do we not

> > see them when they come in from California? Russ is actually

not the

> > the " worst case " , since he is very healthy, with a few behaviors

but he

> > is nonverbal and DD but very talented in many ways. They thing

is, we

> > handle things they have no concept of and don't want to see as

their

> > future . We are a success because we are still together, our

family

> > (our other sons and C and I)is very strong and we are able to

work

> > together. Instead of being afraid, can't they see we are a

testament to

> > the human spirit--not matter what happens, you can be successful?

> >

> > I have dealth with this kind of behavior from parents of young

children

> > but never from family. I am very fragile because of my Mom's

situation

> > and this just makes it worse. I have been sobbing almost since

they

> > left last night. I cannot believe this.

> >

> > Every once in a while, I am hit with some new, crazy situation I

have

> > not seen coming. Sorry about this but what to do?

> >

> > Marie

> >

> >

> >

> >

[Guest guest]

You are on an emotional roller coaster, Marie...holidays, (always brings back

the loss of totally normal experience...), your mom and her mortality...

You and your family are SOOOO successful in spite of the myriad challenges that

life presents along with the major challenges (and I do mean MAJOR) that

adapting daily to living with a person with autism entails. You cannot be

everyone's hero or everyone's friend and though your brother in law would

obviously benefit from a conversation with you, you cannot make people deal with

things they are not ready to deal with.

You are crying for many reasons, and guess what...it is ok to cry and it is ok

to grieve now for the future loss of your Mom and for what your brother in law

may have to go through in the future and for the many hard times you have faced

in your life with and will likely face from time to time in the

future...I suggest tomorrow night and into January 1 you think about all the

good things, the good times and the good people in your life. You just may be

able to stop crying when you realize that your inner strength and the beauty

around you (your healthy and beautiful children and your faithful spouse and

your currently strong and healthy mom) are worth celebrating. '08 will

ultimately have bad and good for all of us, but take a few minutes to

contemplate the positives...whether our sons have autism or not, and whether our

moms die...the beautiful spring flowers will come up, neurotypical babies will

be born and hugs and kisses will be shared...

Go ahead and cry and then enjoy the rainbow that is sure to follow if you look

for it.

Ellen

Ellen Garber Bronfeld

egskb@...

Update

Thanks to Ellen for holding down the fort while Laurie and I take care

of things around our homes--most have nothing to do with our kids. I

have been trying to keep up but several times, I just haven't had the

energy to post. I am posting today because I NEED you to at least tell

me I'm not crazy, and possible giving me some suggestions.

First, the reason I've been away is my mother--after being cancer free

for 6 years, 9 months, her colon cancer has reoccured. We've been

around for second opinions and, because she is 80 and they don't feel

she could handle the heroric operation it would take to remove it all,

it is inoperable. The big deal guy at Northwestern told us he

recommends a course of chemo and RT (a specialized RT--IMRT). I've been

appointed " grand poobah " --since I've handled all sorts of things because

of and have now fought with her GP, her oncologist (Chuck has

done most with him because he's the doctor)and have most of the family

call me, since Mom doesn't want my Dad to deal with anyone--it's hard

enough for him! These past few weeks have been surreal, since Mom is

healthy--except for that speck of cancer--and cheerful and doing very

well. I don't think she realizes what NOT having the surgery means and

I'm not going to tell her, at least not yet. Christmas Eve was

unnaturally happy, including all us kids giving my parents a new, flat

screen TV--Mom always comes home from chemo/RT exhausted and watches her

favorite food shows and Jeopardy and we thought it would be a treat for

them both.

I was not able to attend holidays with my In-laws so we decided to have

a low key get together yesterday. Included was Chuck's brother, the

parent of almost four year old twins, the little boy being dx-ed on the

spectrum last year. He has big language problems but socially seems

fine. The problem was my BIL and the mother of the children (they're

not married) wouldn't speak to me. Russ did very well but still had a

few " autism moments " . Being in his own home, amoung family, I thought

Russ did well--we can't hide his autism and since Russ is 27 years old,

this is no secret. It was so obvious they were snubbing me and so

hurtful. When they left, Chuck told me he thought they weren't prepared

to see someone as involved as Russ and just not as tough as we are. So,

I asked my husband, are we not to take to family events so they

won't see the " worst case'? Are we suppose to hide him away? Do we not

see them when they come in from California? Russ is actually not the

the " worst case " , since he is very healthy, with a few behaviors but he

is nonverbal and DD but very talented in many ways. They thing is, we

handle things they have no concept of and don't want to see as their

future . We are a success because we are still together, our family

(our other sons and C and I)is very strong and we are able to work

together. Instead of being afraid, can't they see we are a testament to

the human spirit--not matter what happens, you can be successful?

I have dealth with this kind of behavior from parents of young children

but never from family. I am very fragile because of my Mom's situation

and this just makes it worse. I have been sobbing almost since they

left last night. I cannot believe this.

Every once in a while, I am hit with some new, crazy situation I have

not seen coming. Sorry about this but what to do?

Marie

[Guest guest]

Dear Marie, my heart breaks reading this, your BIL and his girlfriend should be

so ashamed. I can't believe they would be in your home and not speak to

you.....?I'm so sorry for what you've been dealing with, I'm dealing with

similar issues with my parents and it's taking a big emotional toll.

I would take with you to all family events, he is your son and part of

the family and should not be hidden away.

Hugs to you,

H.

Update

Thanks to Ellen for holding down the fort while Laurie and I take care

of things around our homes--most have nothing to do with our kids. I

have been trying to keep up but several times, I just haven't had the

energy to post. I am posting today because I NEED you to at least tell

me I'm not crazy, and possible giving me some suggestions.

First, the reason I've been away is my mother--after being cancer free

for 6 years, 9 months, her colon cancer has reoccured. We've been

around for second opinions and, because she is 80 and they don't feel

she could handle the heroric operation it would take to remove it all,

it is inoperable. The big deal guy at Northwestern told us he

recommends a course of chemo and RT (a specialized RT--IMRT). I've been

appointed " grand poobah " --since I've handled all sorts of things because

of and have now fought with her GP, her oncologist (Chuck has

done most with him because he's the doctor)and have most of the family

call me, since Mom doesn't want my Dad to deal with anyone--it's hard

enough for him! These past few weeks have been surreal, since Mom is

healthy--except for that speck of cancer--and cheerful and doing very

well. I don't think she realizes what NOT having the surgery means and

I'm not going to tell her, at least not yet. Christmas Eve was

unnaturally happy, including all us kids giving my parents a new, flat

screen TV--Mom always comes home from chemo/RT exhausted and watches her

favorite food shows and Jeopardy and we thought it would be a treat for

them both.

I was not able to attend holidays with my In-laws so we decided to have

a low key get together yesterday. Included was Chuck's brother, the

parent of almost four year old twins, the little boy being dx-ed on the

spectrum last year. He has big language problems but socially seems

fine. The problem was my BIL and the mother of the children (they're

not married) wouldn't speak to me. Russ did very well but still had a

few " autism moments " . Being in his own home, amoung family, I thought

Russ did well--we can't hide his autism and since Russ is 27 years old,

this is no secret. It was so obvious they were snubbing me and so

hurtful. When they left, Chuck told me he thought they weren't prepared

to see someone as involved as Russ and just not as tough as we are. So,

I asked my husband, are we not to take to family events so they

won't see the " worst case'? Are we suppose to hide him away? Do we not

see them when they come in from California? Russ is actually not the

the " worst case " , since he is very healthy, with a few behaviors but he

is nonverbal and DD but very talented in many ways. They thing is, we

handle things they have no concept of and don't want to see as their

future . We are a success because we are still together, our family

(our other sons and C and I)is very strong and we are able to work

together. Instead of being afraid, can't they see we are a testament to

the human spirit--not matter what happens, you can be successful?

I have dealth with this kind of behavior from parents of young children

but never from family. I am very fragile because of my Mom's situation

and this just makes it worse. I have been sobbing almost since they

left last night. I cannot believe this.

Every once in a while, I am hit with some new, crazy situation I have

not seen coming. Sorry about this but what to do?

Marie

[Guest guest]

Hi Marie, I'm the grand poohbah too in my family, I have 3 living brothers and a

sister and we've all taken on our rolls, those to which we are good at.? My

oldest brother is " divorced " from the family so he's a big ZERO, my next oldest

brother lives in Madison, IN but has helped quite a bit calming my 88 year old

father down. Then there is Randy, the " taker " in the family and my younger

sister, the emotional mess of the group but very helpful.? I visited my mom on

Friday, she's in a nursing home now in Palos Hills and cried quietly to myself

while she napped.? My mom suffered a stroke in June then in July we found out

she has uterine cancer, we aren't treating the cancer, the regime of radiation

wouldn't have been a feasible option.? I think this is 100 times more stressful

than dealing with 's autism, I'm so fortunate that is a wonderful young

man and having a good year in school, last year he was struggling as a freshman

and I doubt I could have handled that along with my mom being ill.? I'm trying

to take the day by day approach to life these days and trying to take care of

myself, yeah right, I've gained about 15 lbs since my mom got sick........oh

well, time to get my growing butt back in the gym when I can find the time to

fit that in.

I'd like to wish you all a Happy New Year but I think for many of us will

be?facing more hurdles, so hopefully we can all stick together.

H.

Re: Update

Thanks for your words, Holly. Mom's situation is " picture book " for

her type of rectal cancer. We have been given no stats for the

chemo & RT, however, the operation that would have to be done is

done rarely in anyone over the age of 60. They do it at Sloan-

Kettering and the stats for that are 20% success rate--that's right,

80% failure. Our Northwestern guy will not do it, so Mom does not

have a choice, at least, in Chicago. There is a real chance of

ending up in a wheelchair with surgery and Mom is busy, active and

bright so that prospect doesn't appeal. My husband is actually a

surgeon and he thinks it would be foolish for us to pursue Sloan-

Kettering. Because all this has happened between Thanksgiving and

the winter holidays, it has been difficult to get answers in a

timely way. Her chemo guy has claimed she received too much RT for

her original cnacer to begin this new protocol so we are waiting for

another " super specialist " to return from vacation. Perhaps he will

give us some stats or at least tell us how long she has. If you saw

her, you would not think anything is wrong.

I know we all have had to deal with family issues, but I thought

most of ours were behind us. And you are right, the strong ones

could be dragging along and we would still be expected to handle

it. My dear friend, Ellen, told me off line I should be " flattered "

for being the grand poohbah and in some ways, I am. But when I got

five calls from relatives in the space of one afternoon, it was not

so great!

Thank you and thank all of you for being understanding for my

absence. Wish I was on the beach somewhere, sipping a drink with an

umbrella, reading a trashy novel--like it could happen.

Marie

> >

> >

> > Thanks to Ellen for holding down the fort while Laurie and I

take care

> > of things around our homes--most have nothing to do with our

kids. I

> > have been trying to keep up but several times, I just haven't

had the

> > energy to post. I am posting today because I NEED you to at

least tell

> > me I'm not crazy, and possible giving me some suggestions.

> >

> > First, the reason I've been away is my mother--after being

cancer free

> > for 6 years, 9 months, her colon cancer has reoccured. We've

been

> > around for second opinions and, because she is 80 and they don't

feel

> > she could handle the heroric operation it would take to remove

it all,

> > it is inoperable. The big deal guy at Northwestern told us he

> > recommends a course of chemo and RT (a specialized RT--IMRT).

I've been

> > appointed " grand poobah " --since I've handled all sorts of things

because

> > of and have now fought with her GP, her oncologist

(Chuck has

> > done most with him because he's the doctor)and have most of the

family

> > call me, since Mom doesn't want my Dad to deal with anyone--it's

hard

> > enough for him! These past few weeks have been surreal, since

Mom is

> > healthy--except for that speck of cancer--and cheerful and doing

very

> > well. I don't think she realizes what NOT having the surgery

means and

> > I'm not going to tell her, at least not yet. Christmas Eve was

> > unnaturally happy, including all us kids giving my parents a

new, flat

> > screen TV--Mom always comes home from chemo/RT exhausted and

watches her

> > favorite food shows and Jeopardy and we thought it would be a

treat for

> > them both.

> >

> > I was not able to attend holidays with my In-laws so we decided

to have

> > a low key get together yesterday. Included was Chuck's brother,

the

> > parent of almost four year old twins, the little boy being dx-ed

on the

> > spectrum last year. He has big language problems but socially

seems

> > fine. The problem was my BIL and the mother of the children

(they're

> > not married) wouldn't speak to me. Russ did very well but still

had a

> > few " autism moments " . Being in his own home, amoung family, I

thought

> > Russ did well--we can't hide his autism and since Russ is 27

years old,

> > this is no secret. It was so obvious they were snubbing me and

so

> > hurtful. When they left, Chuck told me he thought they weren't

prepared

> > to see someone as involved as Russ and just not as tough as we

are. So,

> > I asked my husband, are we not to take to family events

so they

> > won't see the " worst case'? Are we suppose to hide him away?

Do we not

> > see them when they come in from California? Russ is actually

not the

> > the " worst case " , since he is very healthy, with a few behaviors

but he

> > is nonverbal and DD but very talented in many ways. They thing

is, we

> > handle things they have no concept of and don't want to see as

their

> > future . We are a success because we are still together, our

family

> > (our other sons and C and I)is very strong and we are able to

work

> > together. Instead of being afraid, can't they see we are a

testament to

> > the human spirit--not matter what happens, you can be successful?

> >

> > I have dealth with this kind of behavior from parents of young

children

> > but never from family. I am very fragile because of my Mom's

situation

> > and this just makes it worse. I have been sobbing almost since

they

> > left last night. I cannot believe this.

> >

> > Every once in a while, I am hit with some new, crazy situation I

have

> > not seen coming. Sorry about this but what to do?

> >

> > Marie

> >

> >

> >

> >

[Guest guest]

Dear Ellen, what a beautiful note to Marie.

H.

Re: Update

You are on an emotional roller coaster, Marie...holidays, (always brings back

the loss of totally normal experience...), your mom and her mortality...

You and your family are SOOOO successful in spite of the myriad challenges that

life presents along with the major challenges (and I do mean MAJOR) that

adapting daily to living with a person with autism entails. You cannot be

everyone's hero or everyone's friend and though your brother in law would

obviously benefit from a conversation with you, you cannot make people deal with

things they are not ready to deal with.

You are crying for many reasons, and guess what...it is ok to cry and it is ok

to grieve now for the future loss of your Mom and for what your brother in law

may have to go through in the future and for the many hard times you have faced

in your life with and will likely face from time to time in the

future...I suggest tomorrow night and into January 1 you think about all the

good things, the good times and the good people in your life. You just may be

able to stop crying when you realize that your inner strength and the beauty

around you (your healthy and beautiful children and your faithful spouse and

your currently strong and healthy mom) are worth celebrating. '08 will

ultimately have bad and good for all of us, but take a few minutes to

contemplate the positives...whether our sons have autism or not, and whether our

moms die...the beautiful spring flowers will come up, neurotypical babies will

be born and hugs and kisses will be shared...

Go ahead and cry and then enjoy the rainbow that is sure to follow if you look

for it.

Ellen

Ellen Garber Bronfeld

egskb@...

Update

Thanks to Ellen for holding down the fort while Laurie and I take care

of things around our homes--most have nothing to do with our kids. I

have been trying to keep up but several times, I just haven't had the

energy to post. I am posting today because I NEED you to at least tell

me I'm not crazy, and possible giving me some suggestions.

First, the reason I've been away is my mother--after being cancer free

for 6 years, 9 months, her colon cancer has reoccured. We've been

around for second opinions and, because she is 80 and they don't feel

she could handle the heroric operation it would take to remove it all,

it is inoperable. The big deal guy at Northwestern told us he

recommends a course of chemo and RT (a specialized RT--IMRT). I've been

appointed " grand poobah " --since I've handled all sorts of things because

of and have now fought with her GP, her oncologist (Chuck has

done most with him because he's the doctor)and have most of the family

call me, since Mom doesn't want my Dad to deal with anyone--it's hard

enough for him! These past few weeks have been surreal, since Mom is

healthy--except for that speck of cancer--and cheerful and doing very

well. I don't think she realizes what NOT having the surgery means and

I'm not going to tell her, at least not yet. Christmas Eve was

unnaturally happy, including all us kids giving my parents a new, flat

screen TV--Mom always comes home from chemo/RT exhausted and watches her

favorite food shows and Jeopardy and we thought it would be a treat for

them both.

I was not able to attend holidays with my In-laws so we decided to have

a low key get together yesterday. Included was Chuck's brother, the

parent of almost four year old twins, the little boy being dx-ed on the

spectrum last year. He has big language problems but socially seems

fine. The problem was my BIL and the mother of the children (they're

not married) wouldn't speak to me. Russ did very well but still had a

few " autism moments " . Being in his own home, amoung family, I thought

Russ did well--we can't hide his autism and since Russ is 27 years old,

this is no secret. It was so obvious they were snubbing me and so

hurtful. When they left, Chuck told me he thought they weren't prepared

to see someone as involved as Russ and just not as tough as we are. So,

I asked my husband, are we not to take to family events so they

won't see the " worst case'? Are we suppose to hide him away? Do we not

see them when they come in from California? Russ is actually not the

the " worst case " , since he is very healthy, with a few behaviors but he

is nonverbal and DD but very talented in many ways. They thing is, we

handle things they have no concept of and don't want to see as their

future . We are a success because we are still together, our family

(our other sons and C and I)is very strong and we are able to work

together. Instead of being afraid, can't they see we are a testament to

the human spirit--not matter what happens, you can be successful?

I have dealth with this kind of behavior from parents of young children

but never from family. I am very fragile because of my Mom's situation

and this just makes it worse. I have been sobbing almost since they

left last night. I cannot believe this.

Every once in a while, I am hit with some new, crazy situation I have

not seen coming. Sorry about this but what to do?

Marie

[Guest guest]

Marie,

I read the post but do not post very offten. You are a very strong women and

have the support of the family that you need. Since you BIL lives in California

you will not have to deal with him all the time. My son will be 18 tomorrow and

thank God I have wonderful family and friends. I think they will seek you out

when they can deal with it but right now they seem like they are still in

denial.

Please remember how far you have come. Years ago the professional gave us no

hope for our kids. Now they are more involved in the community because of the

parents.

When you get down look at Russ, He will give you the strenght you need.

Have a Happy New Year

Maureen

sunshinebeaches3@... wrote:

Dear Ellen, what a beautiful note to Marie.

H.

Re: Update

You are on an emotional roller coaster, Marie...holidays, (always brings back

the loss of totally normal experience...), your mom and her mortality...

You and your family are SOOOO successful in spite of the myriad challenges that

life presents along with the major challenges (and I do mean MAJOR) that

adapting daily to living with a person with autism entails. You cannot be

everyone's hero or everyone's friend and though your brother in law would

obviously benefit from a conversation with you, you cannot make people deal with

things they are not ready to deal with.

You are crying for many reasons, and guess what...it is ok to cry and it is ok

to grieve now for the future loss of your Mom and for what your brother in law

may have to go through in the future and for the many hard times you have faced

in your life with and will likely face from time to time in the

future...I suggest tomorrow night and into January 1 you think about all the

good things, the good times and the good people in your life. You just may be

able to stop crying when you realize that your inner strength and the beauty

around you (your healthy and beautiful children and your faithful spouse and

your currently strong and healthy mom) are worth celebrating. '08 will

ultimately have bad and good for all of us, but take a few minutes to

contemplate the positives...whether our sons have autism or not, and whether our

moms die...the beautiful spring flowers will come up, neurotypical babies will

be born and hugs and kisses will be shared...

Go ahead and cry and then enjoy the rainbow that is sure to follow if you look

for it.

Ellen

Ellen Garber Bronfeld

egskb@...

Update

Thanks to Ellen for holding down the fort while Laurie and I take care

of things around our homes--most have nothing to do with our kids. I

have been trying to keep up but several times, I just haven't had the

energy to post. I am posting today because I NEED you to at least tell

me I'm not crazy, and possible giving me some suggestions.

First, the reason I've been away is my mother--after being cancer free

for 6 years, 9 months, her colon cancer has reoccured. We've been

around for second opinions and, because she is 80 and they don't feel

she could handle the heroric operation it would take to remove it all,

it is inoperable. The big deal guy at Northwestern told us he

recommends a course of chemo and RT (a specialized RT--IMRT). I've been

appointed " grand poobah " --since I've handled all sorts of things because

of and have now fought with her GP, her oncologist (Chuck has

done most with him because he's the doctor)and have most of the family

call me, since Mom doesn't want my Dad to deal with anyone--it's hard

enough for him! These past few weeks have been surreal, since Mom is

healthy--except for that speck of cancer--and cheerful and doing very

well. I don't think she realizes what NOT having the surgery means and

I'm not going to tell her, at least not yet. Christmas Eve was

unnaturally happy, including all us kids giving my parents a new, flat

screen TV--Mom always comes home from chemo/RT exhausted and watches her

favorite food shows and Jeopardy and we thought it would be a treat for

them both.

I was not able to attend holidays with my In-laws so we decided to have

a low key get together yesterday. Included was Chuck's brother, the

parent of almost four year old twins, the little boy being dx-ed on the

spectrum last year. He has big language problems but socially seems

fine. The problem was my BIL and the mother of the children (they're

not married) wouldn't speak to me. Russ did very well but still had a

few " autism moments " . Being in his own home, amoung family, I thought

Russ did well--we can't hide his autism and since Russ is 27 years old,

this is no secret. It was so obvious they were snubbing me and so

hurtful. When they left, Chuck told me he thought they weren't prepared

to see someone as involved as Russ and just not as tough as we are. So,

I asked my husband, are we not to take to family events so they

won't see the " worst case'? Are we suppose to hide him away? Do we not

see them when they come in from California? Russ is actually not the

the " worst case " , since he is very healthy, with a few behaviors but he

is nonverbal and DD but very talented in many ways. They thing is, we

handle things they have no concept of and don't want to see as their

future . We are a success because we are still together, our family

(our other sons and C and I)is very strong and we are able to work

together. Instead of being afraid, can't they see we are a testament to

the human spirit--not matter what happens, you can be successful?

I have dealth with this kind of behavior from parents of young children

but never from family. I am very fragile because of my Mom's situation

and this just makes it worse. I have been sobbing almost since they

left last night. I cannot believe this.

Every once in a while, I am hit with some new, crazy situation I have

not seen coming. Sorry about this but what to do?

Marie

[Guest guest]

Hi Marie,

I'm so sorry to hear about your mom. Both my parents had cancer

and there wasn't a lot

the doctor's could do. My dad had lymphoma and my mom had lung

cancer! ( she was not

a smoker!) They both went through a lot of chemo and my mom had

surgery, but the

pain was overwhelming and then she had a stroke. It was very scary

for them and

hard for us to watch them be so sick. Having a doctor in the family

was very helpful.

Ron was able to talk to the doctors and try and explain things to the

rest of my family.

It is a very stressful time, so try to take care of yourself....which

I know is

hard to do when we have kids who depend on us!

Take care and Happy New Year,

nne

On Dec 30, 2007, at 12:23 PM, Marie Grass Amenta wrote:

>

> Thanks to Ellen for holding down the fort while Laurie and I take care

> of things around our homes--most have nothing to do with our kids. I

> have been trying to keep up but several times, I just haven't had the

> energy to post. I am posting today because I NEED you to at least tell

> me I'm not crazy, and possible giving me some suggestions.

>

> First, the reason I've been away is my mother--after being cancer free

> for 6 years, 9 months, her colon cancer has reoccured. We've been

> around for second opinions and, because she is 80 and they don't feel

> she could handle the heroric operation it would take to remove it all,

> it is inoperable. The big deal guy at Northwestern told us he

> recommends a course of chemo and RT (a specialized RT--IMRT). I've

> been

> appointed " grand poobah " --since I've handled all sorts of things

> because

> of and have now fought with her GP, her oncologist (Chuck has

> done most with him because he's the doctor)and have most of the family

> call me, since Mom doesn't want my Dad to deal with anyone--it's hard

> enough for him! These past few weeks have been surreal, since Mom is

> healthy--except for that speck of cancer--and cheerful and doing very

> well. I don't think she realizes what NOT having the surgery means and

> I'm not going to tell her, at least not yet. Christmas Eve was

> unnaturally happy, including all us kids giving my parents a new, flat

> screen TV--Mom always comes home from chemo/RT exhausted and

> watches her

> favorite food shows and Jeopardy and we thought it would be a treat

> for

> them both.

>

> I was not able to attend holidays with my In-laws so we decided to

> have

> a low key get together yesterday. Included was Chuck's brother, the

> parent of almost four year old twins, the little boy being dx-ed on

> the

> spectrum last year. He has big language problems but socially seems

> fine. The problem was my BIL and the mother of the children (they're

> not married) wouldn't speak to me. Russ did very well but still had a

> few " autism moments " . Being in his own home, amoung family, I thought

> Russ did well--we can't hide his autism and since Russ is 27 years

> old,

> this is no secret. It was so obvious they were snubbing me and so

> hurtful. When they left, Chuck told me he thought they weren't

> prepared

> to see someone as involved as Russ and just not as tough as we are.

> So,

> I asked my husband, are we not to take to family events so

> they

> won't see the " worst case'? Are we suppose to hide him away? Do we not

> see them when they come in from California? Russ is actually not the

> the " worst case " , since he is very healthy, with a few behaviors

> but he

> is nonverbal and DD but very talented in many ways. They thing is, we

> handle things they have no concept of and don't want to see as their

> future . We are a success because we are still together, our family

> (our other sons and C and I)is very strong and we are able to work

> together. Instead of being afraid, can't they see we are a

> testament to

> the human spirit--not matter what happens, you can be successful?

>

> I have dealth with this kind of behavior from parents of young

> children

> but never from family. I am very fragile because of my Mom's situation

> and this just makes it worse. I have been sobbing almost since they

> left last night. I cannot believe this.

>

> Every once in a while, I am hit with some new, crazy situation I have

> not seen coming. Sorry about this but what to do?

>

> Marie

>

>

[Guest guest]

Hi :

We WILL all stick together. That is part of what IPADDU is all about.

We are all here for each other.

Sorry for your challenges...You and Marie have a lot in common, apparently.

You too must be very competent and stable to become the anchor in your family.

So glad that your son is doing well at the moment...we must take our blessings

wherever and whenever they come!

Ellen

Ellen Garber Bronfeld

egskb@...

Re: Update

Thanks for your words, Holly. Mom's situation is " picture book " for

her type of rectal cancer. We have been given no stats for the

chemo & RT, however, the operation that would have to be done is

done rarely in anyone over the age of 60. They do it at Sloan-

Kettering and the stats for that are 20% success rate--that's right,

80% failure. Our Northwestern guy will not do it, so Mom does not

have a choice, at least, in Chicago. There is a real chance of

ending up in a wheelchair with surgery and Mom is busy, active and

bright so that prospect doesn't appeal. My husband is actually a

surgeon and he thinks it would be foolish for us to pursue Sloan-

Kettering. Because all this has happened between Thanksgiving and

the winter holidays, it has been difficult to get answers in a

timely way. Her chemo guy has claimed she received too much RT for

her original cnacer to begin this new protocol so we are waiting for

another " super specialist " to return from vacation. Perhaps he will

give us some stats or at least tell us how long she has. If you saw

her, you would not think anything is wrong.

I know we all have had to deal with family issues, but I thought

most of ours were behind us. And you are right, the strong ones

could be dragging along and we would still be expected to handle

it. My dear friend, Ellen, told me off line I should be " flattered "

for being the grand poohbah and in some ways, I am. But when I got

five calls from relatives in the space of one afternoon, it was not

so great!

Thank you and thank all of you for being understanding for my

absence. Wish I was on the beach somewhere, sipping a drink with an

umbrella, reading a trashy novel--like it could happen.

Marie

> >

> >

> > Thanks to Ellen for holding down the fort while Laurie and I

take care

> > of things around our homes--most have nothing to do with our

kids. I

> > have been trying to keep up but several times, I just haven't

had the

> > energy to post. I am posting today because I NEED you to at

least tell

> > me I'm not crazy, and possible giving me some suggestions.

> >

> > First, the reason I've been away is my mother--after being

cancer free

> > for 6 years, 9 months, her colon cancer has reoccured. We've

been

> > around for second opinions and, because she is 80 and they don't

feel

> > she could handle the heroric operation it would take to remove

it all,

> > it is inoperable. The big deal guy at Northwestern told us he

> > recommends a course of chemo and RT (a specialized RT--IMRT).

I've been

> > appointed " grand poobah " --since I've handled all sorts of things

because

> > of and have now fought with her GP, her oncologist

(Chuck has

> > done most with him because he's the doctor)and have most of the

family

> > call me, since Mom doesn't want my Dad to deal with anyone--it's

hard

> > enough for him! These past few weeks have been surreal, since

Mom is

> > healthy--except for that speck of cancer--and cheerful and doing

very

> > well. I don't think she realizes what NOT having the surgery

means and

> > I'm not going to tell her, at least not yet. Christmas Eve was

> > unnaturally happy, including all us kids giving my parents a

new, flat

> > screen TV--Mom always comes home from chemo/RT exhausted and

watches her

> > favorite food shows and Jeopardy and we thought it would be a

treat for

> > them both.

> >

> > I was not able to attend holidays with my In-laws so we decided

to have

> > a low key get together yesterday. Included was Chuck's brother,

the

> > parent of almost four year old twins, the little boy being dx-ed

on the

> > spectrum last year. He has big language problems but socially

seems

> > fine. The problem was my BIL and the mother of the children

(they're

> > not married) wouldn't speak to me. Russ did very well but still

had a

> > few " autism moments " . Being in his own home, amoung family, I

thought

> > Russ did well--we can't hide his autism and since Russ is 27

years old,

> > this is no secret. It was so obvious they were snubbing me and

so

> > hurtful. When they left, Chuck told me he thought they weren't

prepared

> > to see someone as involved as Russ and just not as tough as we

are. So,

> > I asked my husband, are we not to take to family events

so they

> > won't see the " worst case'? Are we suppose to hide him away?

Do we not

> > see them when they come in from California? Russ is actually

not the

> > the " worst case " , since he is very healthy, with a few behaviors

but he

> > is nonverbal and DD but very talented in many ways. They thing

is, we

> > handle things they have no concept of and don't want to see as

their

> > future . We are a success because we are still together, our

family

> > (our other sons and C and I)is very strong and we are able to

work

> > together. Instead of being afraid, can't they see we are a

testament to

> > the human spirit--not matter what happens, you can be successful?

> >

> > I have dealth with this kind of behavior from parents of young

children

> > but never from family. I am very fragile because of my Mom's

situation

> > and this just makes it worse. I have been sobbing almost since

they

> > left last night. I cannot believe this.

> >

> > Every once in a while, I am hit with some new, crazy situation I

have

> > not seen coming. Sorry about this but what to do?

> >

> > Marie

> >

> >

> >

> >

[Guest guest]

Thanks, .

Ellen

Ellen Garber Bronfeld

egskb@...

Update

Thanks to Ellen for holding down the fort while Laurie and I take care

of things around our homes--most have nothing to do with our kids. I

have been trying to keep up but several times, I just haven't had the

energy to post. I am posting today because I NEED you to at least tell

me I'm not crazy, and possible giving me some suggestions.

First, the reason I've been away is my mother--after being cancer free

for 6 years, 9 months, her colon cancer has reoccured. We've been

around for second opinions and, because she is 80 and they don't feel

she could handle the heroric operation it would take to remove it all,

it is inoperable. The big deal guy at Northwestern told us he

recommends a course of chemo and RT (a specialized RT--IMRT). I've been

appointed " grand poobah " --since I've handled all sorts of things because

of and have now fought with her GP, her oncologist (Chuck has

done most with him because he's the doctor)and have most of the family

call me, since Mom doesn't want my Dad to deal with anyone--it's hard

enough for him! These past few weeks have been surreal, since Mom is

healthy--except for that speck of cancer--and cheerful and doing very

well. I don't think she realizes what NOT having the surgery means and

I'm not going to tell her, at least not yet. Christmas Eve was

unnaturally happy, including all us kids giving my parents a new, flat

screen TV--Mom always comes home from chemo/RT exhausted and watches her

favorite food shows and Jeopardy and we thought it would be a treat for

them both.

I was not able to attend holidays with my In-laws so we decided to have

a low key get together yesterday. Included was Chuck's brother, the

parent of almost four year old twins, the little boy being dx-ed on the

spectrum last year. He has big language problems but socially seems

fine. The problem was my BIL and the mother of the children (they're

not married) wouldn't speak to me. Russ did very well but still had a

few " autism moments " . Being in his own home, amoung family, I thought

Russ did well--we can't hide his autism and since Russ is 27 years old,

this is no secret. It was so obvious they were snubbing me and so

hurtful. When they left, Chuck told me he thought they weren't prepared

to see someone as involved as Russ and just not as tough as we are. So,

I asked my husband, are we not to take to family events so they

won't see the " worst case'? Are we suppose to hide him away? Do we not

see them when they come in from California? Russ is actually not the

the " worst case " , since he is very healthy, with a few behaviors but he

is nonverbal and DD but very talented in many ways. They thing is, we

handle things they have no concept of and don't want to see as their

future . We are a success because we are still together, our family

(our other sons and C and I)is very strong and we are able to work

together. Instead of being afraid, can't they see we are a testament to

the human spirit--not matter what happens, you can be successful?

I have dealth with this kind of behavior from parents of young children

but never from family. I am very fragile because of my Mom's situation

and this just makes it worse. I have been sobbing almost since they

left last night. I cannot believe this.

Every once in a while, I am hit with some new, crazy situation I have

not seen coming. Sorry about this but what to do?

Marie

[Guest guest]

Hi, I am so sorry to hear about what you are going thru and I can tell you that

my mother in law had surgery at 92 for colon cancer and had 4 more years after

that so it can be done. Not that I know anything medical or your exact

situation but there were many that said mom shouldn't have to go thru surgery.

Well, I kept saying if she doesn't we are just giving up and I wasn't ready for

that. They built her up in the hospital for a few days and she stayed in for

about a week after to build up strength. She ended up back in her assisted

living place, which she loved, after about two months and had a number of good

years. Hope that helps. As to the family not being ready to see what the

future may hold in store, I have run in to that quite often and it is difficult.

Hopefully you can continue to attend family functions and continue to keep the

door open for the day when they may look to you for guidance. It is always

painful to be shunned, but our kids have to deal with it often so I always

figure I can do it and be an example of how to handle it.

Family can often be the toughest because our expectations are that they will be

kind and accepting because they ARE family, but it often is not the case. I

have not been invited to my brothers home since my daughter had a major meltdown

there almost 11 years ago!! We talk and write but there is no " getting

together " , always an excuse why they can't. It hurts but it is their loss. My

prayers are with you to give you strength. Gloria

[Guest guest]

You're quite welcome. I'm glad things are better today. I know what you mean about a mammogram. I'm supposed to have a base-line since I'll be 40 this coming June and my grandmother being a breast cancer survivor. I should also mention my step-mother is a breast cancer survivor (just having a mastectomy just a little over a year ago.) Plus we discussed my mom yesterday. Kinda scary.... As far as a job with insurance, there are some companies that start insurance on day 1. The ones I know of is Chase bank and State Farm. I'm currently looking for a different job that doesn't have me on my feet so much and doing so much of the stuff that gets me so sore. I'll let you know if I hear of any other companies with insurance on day 1. Nadine Bastone <cbast1030@...> wrote: Dear Everyone, I am still drained--but that is nothing new for me! Yesterday was so strange--as I had never been so focused on that part of my anatomy before!! The lump that started all this trouble seems to no longer be there. And as I am still sore from all my prodding and poking yesterday I can't tell for sure if there are any more!! I learned that yes--my Aunt did have Breast Cancer--but got treatment and is fine now. My husband reminded me that his sister had it (I believe that she had it in her 20's--long before I met my husband.) He also has an Aunt who recently had it. That sort of horrified me when I thought about my daughter!! I will have to be sure to teach her the importance of self-exams when she gets older!!! If there's one thing that this experience taught me it's that!!!!!!! I had never paid a whole lot of attention before. And so I had no comparison for how they usually feel. But self-exams and even mammograms now that I'm over 40 have jumped up quite a few notches on my priority list!!! And--as if I don't have enough motivation to try and bring in an income--having the money to go to the doctor has jumped on the priority list as well. I REALLY need to go regarding my asthma, to see if I have hypothyroidism--and if I can find one who "believes" in Chronic

Fatigue--or thinks there's something that I can do besides take Prozac--I can go for that too!! I really want to say a heartfelt thank you to all those who responded to my frightened and anxious email. I honestly don't know what I would have done yesterday without you!!!!!!! So THANK YOU from the bottom of my heart! much love, Cricket071aol

Never miss a thing. Make your homepage.

[Guest guest]

Almost all the hi-tech companies start benefits on day 1. I worked for IBM for 35 years and although many benefits have vanished over the years, you still get your health insurance on day 1.

Pam

Re: Update

You're quite welcome. I'm glad things are better today. I know what you mean about a mammogram. I'm supposed to have a base-line since I'll be 40 this coming June and my grandmother being a breast cancer survivor. I should also mention my step-mother is a breast cancer survivor (just having a mastectomy just a little over a year ago.) Plus we discussed my mom yesterday. Kinda scary....

As far as a job with insurance, there are some companies that start insurance on day 1. The ones I know of is Chase bank and State Farm. I'm currently looking for a different job that doesn't have me on my feet so much and doing so much of the stuff that gets me so sore. I'll let you know if I hear of any other companies with insurance on day 1.

Nadine Bastone <cbast1030 > wrote:

Dear Everyone,

I am still drained--but that is nothing new for me!

Yesterday was so strange--as I had never been so focused on that part of my anatomy before!!

The lump that started all this trouble seems to no longer be there. And as I am still sore from all my prodding and poking yesterday I can't tell for sure if there are any more!!

I learned that yes--my Aunt did have Breast Cancer--but got treatment and is fine now.

My husband reminded me that his sister had it (I believe that she had it in her 20's--long before I met my husband.) He also has an Aunt who recently had it. That sort of horrified me when I thought about my daughter!! I will have to be sure to teach her the importance of self-exams when she gets older!!! If there's one thing that this experience taught me it's that!!!!!!! I had never paid a whole lot of attention before. And so I had no comparison for how they usually feel. But self-exams and even mammograms now that I'm over 40 have jumped up quite a few notches on my priority list!!!

And--as if I don't have enough motivation to try and bring in an income--having the money to go to the doctor has jumped on the priority list as well. I REALLY need to go regarding my asthma, to see if I have hypothyroidism--and if I can find one who "believes" in Chronic Fatigue--or thinks there's something that I can do besides take Prozac--I can go for that too!!

I really want to say a heartfelt thank you to all those who responded to my frightened and anxious email. I honestly don't know what I would have done yesterday without you!!!!!!! So THANK YOU from the bottom of my heart!

much love,

Cricket071aol

Never miss a thing. Make your homepage.

[Guest guest]

Camille,

I'm sorry to hear that the pain mgt clinic wasn't what you were

looking for. Hopefully you will have better luck soon! As far as

finding a surgeon. I've heard (so hearsay only, I have no personal

experience) favorable things about Dr Lloyd Hey in Raleigh, North

Carolina from several people who have had revision surgery with him.

If you're willing to travel, he may be worth a try for another

opinion, and may be closer to you than some of the other surgeons.

From what I've heard, he has a very compassionate personality. Here

is a link to more info about him & his office - and like I said, I

have no personal experience with him, but have heard good things from

several other flatbackers about him. Please do your research and

make your own opinions!

http://www.spineuniverse.com/mdpage.php?doctorID=4542

>

> The Pain Relief Center was a blow-out. It was a chiropractor,

which

> was not mentioned in the ad or on the phone when I called to make

the

> appt. I am not against chiropractors.......make note! However,

> that's not what I'm looking for now. He told me I could go to a

> medical pain mgmt clinic and get doped up, but that it looked like

I

> was on plenty of meds already (referring to my 3 anti-depressants,

> asthma meds, and cholesterol meds). So anyway, live and learn.

I've

> already been down the chiropractor on several occasions throughout

> the years.

>

> As a follow-up from my previous postings, searching for a revision

> specialist. I had hoped that I could find a doc to follow me after

> having revision surgery elsewhere. I saw a spine surgeon in Athens

> (closer to home than Atlanta) and he said he had never even seen

> anything like the hardware in my back (referring to the Dwyer

> Instrumention: screws, pins, and cables...some of which is broken),

> so I quickly realized that I barking up the wrong tree. He's

> referring me to Emory.....someone other than Horton. Now, Horton

> wanted to do surgery 5 yrs. ago, but I wasn't ready and he was very

> disrespectful and rude to me. I went thru the injections and PT

and

> anti-inflamatories......all of which only gave me a little

temporary

> relief.

>

> While I'm on a roll, I'll just keep hogging the message board!

> Horton is supposively the most experienced in GA, however, he's not

> in the line-up with Boachie, Rand, Bridwell, etc. (just my opinion

> based on years of research).

> Chances are....and I'm speculating here, a surgeon who feels he is

> qualified to do revision surgery is not likely to follow me if I

> choose to go out-of-state for " the surgery " . Does that make sense?

>

> Maybe I don't need to go out of state, maybe I don't need the

> surgery, maybe I'm just plain worn out and want relief.....NOW. I

> was " gung-ho " about the surgery in the beginning, now I'm in a rut

> and don't have the energy or motivation to take on such an

endeavor.

> I recently had bronchitis for a month (requiring prednisone), now I

> have a bad sinus infection, requiring a month of strong anti-

> biotics. So now that I'm writing this all down, it makes a little

> more sense why I'm wiped out.

>

> May the Powers that BE show me the way, one moment at a time.

>

> Thanks for letting me ramble on again,

> camille

>

[Guest guest]

Camille:

While you are looking for a doctor in your area have you looked at neurosurgeons. I saw a really good one here in Oklahoma. He told me he was not qualified or experienced enough to do a revision surgery but reffered me to Dr. Ondra in Chicago. I did have revision surgery with Dr. Ondra and the doctor here followed me when I got back. I think a relly good surgeon should know his limits and be willing to refer you on.

Elaine

update

The Pain Relief Center was a blow-out. It was a chiropractor, which was not mentioned in the ad or on the phone when I called to make the appt. I am not against chiropractors. ......make note! However, that's not what I'm looking for now. He told me I could go to a medical pain mgmt clinic and get doped up, but that it looked like I was on plenty of meds already (referring to my 3 anti-depressants, asthma meds, and cholesterol meds). So anyway, live and learn. I've already been down the chiropractor on several occasions throughout the years.As a follow-up from my previous postings, searching for a revision specialist. I had hoped that I could find a doc to follow me after having revision surgery elsewhere. I saw a spine surgeon in Athens (closer to home than Atlanta) and he said he had never even seen anything like the hardware in my back (referring to the Dwyer Instrumention: screws, pins,

and cables...some of which is broken), so I quickly realized that I barking up the wrong tree. He's referring me to Emory.....someone other than Horton. Now, Horton wanted to do surgery 5 yrs. ago, but I wasn't ready and he was very disrespectful and rude to me. I went thru the injections and PT and anti-inflamatories. .....all of which only gave me a little temporary relief.While I'm on a roll, I'll just keep hogging the message board! Horton is supposively the most experienced in GA, however, he's not in the line-up with Boachie, Rand, Bridwell, etc. (just my opinion based on years of research). Chances are....and I'm speculating here, a surgeon who feels he is qualified to do revision surgery is not likely to follow me if I choose to go out-of-state for "the surgery". Does that make sense?Maybe I don't need to go out of state, maybe I don't need the surgery, maybe I'm just plain worn

out and want relief.....NOW. I was "gung-ho" about the surgery in the beginning, now I'm in a rut and don't have the energy or motivation to take on such an endeavor. I recently had bronchitis for a month (requiring prednisone), now I have a bad sinus infection, requiring a month of strong anti-biotics. So now that I'm writing this all down, it makes a little more sense why I'm wiped out.May the Powers that BE show me the way, one moment at a time.Thanks for letting me ramble on again,camille

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

--Thanks , I have Dr. Hey's name written down on my list. So,

I appreciate the feedback on him, b/c I don't know of anyone who has

had revision surgery with him. It's definitely closer than any of

the others.

camille

- In , " rebeccamaas "

<rebeccamaas@...> wrote:

>

> Camille,

> I'm sorry to hear that the pain mgt clinic wasn't what you were

> looking for. Hopefully you will have better luck soon! As far as

> finding a surgeon. I've heard (so hearsay only, I have no personal

> experience) favorable things about Dr Lloyd Hey in Raleigh, North

> Carolina from several people who have had revision surgery with

him.

> If you're willing to travel, he may be worth a try for another

> opinion, and may be closer to you than some of the other surgeons.

> From what I've heard, he has a very compassionate personality.

Here

> is a link to more info about him & his office - and like I said, I

> have no personal experience with him, but have heard good things

from

> several other flatbackers about him. Please do your research and

> make your own opinions!

> http://www.spineuniverse.com/mdpage.php?doctorID=4542

>

>

>

> >

> > The Pain Relief Center was a blow-out. It was a chiropractor,

> which

> > was not mentioned in the ad or on the phone when I called to make

> the

> > appt. I am not against chiropractors.......make note! However,

> > that's not what I'm looking for now. He told me I could go to a

> > medical pain mgmt clinic and get doped up, but that it looked

like

> I

> > was on plenty of meds already (referring to my 3 anti-

depressants,

> > asthma meds, and cholesterol meds). So anyway, live and learn.

> I've

> > already been down the chiropractor on several occasions

throughout

> > the years.

> >

> > As a follow-up from my previous postings, searching for a

revision

> > specialist. I had hoped that I could find a doc to follow me

after

> > having revision surgery elsewhere. I saw a spine surgeon in

Athens

> > (closer to home than Atlanta) and he said he had never even seen

> > anything like the hardware in my back (referring to the Dwyer

> > Instrumention: screws, pins, and cables...some of which is

broken),

> > so I quickly realized that I barking up the wrong tree. He's

> > referring me to Emory.....someone other than Horton. Now, Horton

> > wanted to do surgery 5 yrs. ago, but I wasn't ready and he was

very

> > disrespectful and rude to me. I went thru the injections and PT

> and

> > anti-inflamatories......all of which only gave me a little

> temporary

> > relief.

> >

> > While I'm on a roll, I'll just keep hogging the message board!

> > Horton is supposively the most experienced in GA, however, he's

not

> > in the line-up with Boachie, Rand, Bridwell, etc. (just my

opinion

> > based on years of research).

> > Chances are....and I'm speculating here, a surgeon who feels he

is

> > qualified to do revision surgery is not likely to follow me if I

> > choose to go out-of-state for " the surgery " . Does that make

sense?

> >

> > Maybe I don't need to go out of state, maybe I don't need the

> > surgery, maybe I'm just plain worn out and want relief.....NOW.

I

> > was " gung-ho " about the surgery in the beginning, now I'm in a

rut

> > and don't have the energy or motivation to take on such an

> endeavor.

> > I recently had bronchitis for a month (requiring prednisone), now

I

> > have a bad sinus infection, requiring a month of strong anti-

> > biotics. So now that I'm writing this all down, it makes a

little

> > more sense why I'm wiped out.

> >

> > May the Powers that BE show me the way, one moment at a time.

> >

> > Thanks for letting me ramble on again,

> > camille

> >

>