Re: New Rodney Update...Important

[Guest guest]

Becki,

Why have they not tried a Lung transplant on Rodney? I asked this question

earlier but I wonder if half of my messages get on here. Deb A

[Guest guest]

Do you have any idea on how much the deductable is ?........ Crystal

[Guest guest]

Do you have any idea on how much the deductable is ?........ Crystal

[Guest guest]

Deb,

Rodney did not want a lung transplant--said he wanted to die with what he

has. Another factor is that he is having trouble with other organs too.

Heart, liver, kidneys, etc.

All his systems are trying to shut down so lung tx would only have helped one

area. He would need the others transplanted too.

And there has never been a lung transplant patient his age survive the

transplant.

So, after looking at all the odds, Sherrie (him Mom) chose to let him do what

he wanted to do.

Sorry we did not respond to your question from earlier post.

Aunt B ------------------- to Rodney 11 wcf

p.s.Thanks so much for sending card, etc to him. I remember seeing your name

on one of the cards he received.

[Guest guest]

Deb,

Rodney did not want a lung transplant--said he wanted to die with what he

has. Another factor is that he is having trouble with other organs too.

Heart, liver, kidneys, etc.

All his systems are trying to shut down so lung tx would only have helped one

area. He would need the others transplanted too.

And there has never been a lung transplant patient his age survive the

transplant.

So, after looking at all the odds, Sherrie (him Mom) chose to let him do what

he wanted to do.

Sorry we did not respond to your question from earlier post.

Aunt B ------------------- to Rodney 11 wcf

p.s.Thanks so much for sending card, etc to him. I remember seeing your name

on one of the cards he received.

[Guest guest]

Crystal,

The amount they were asking first was $2500.

They have since then told her it would be $1250.

And finally, they called her back and told her they will bill the $1250 but

it will be due in 30 days. And are supposed to come by to check on him

tomorrow am.

We are all willing to chip in to help her---its just a large amount in a

short period of time.

We are just feeling overwhelmed at the moment.

Aunt B ------------------ to Rodney 11 wcf

[Guest guest]

Crystal,

The amount they were asking first was $2500.

They have since then told her it would be $1250.

And finally, they called her back and told her they will bill the $1250 but

it will be due in 30 days. And are supposed to come by to check on him

tomorrow am.

We are all willing to chip in to help her---its just a large amount in a

short period of time.

We are just feeling overwhelmed at the moment.

Aunt B ------------------ to Rodney 11 wcf

[Guest guest]

Dawn,

I dont know how to thank you enough!

Our family and friends will all chip in but it is a lot of money to come up

with in such a short time.

I am going to the bank tomorrow to set up an account for donations.

If you want to send directly to me, I will deposit when I get the account

open.

Betty J Lyle 256/447-6316

480 Piedmont Springs Road

Piedmont, Alabama 36272

And thanks for the moral support. Just knowing there are so many people out

there who care so much is a real comfort to Rodney and to all my family.

Aunt B ----------------- to Rodney 11 wcf

p.s. I remember your name from some of Rodney's cards, etc. ---thankx!

Without the cards and stuff coming in I do not think he would have survived

this long.

He just went home yesterday and is already receiving mail forwarded from the

hospital! that is very fast for forwarded mail. Someone made up forwarding

address labels so all they have to do at the hospital is stick a label on the

mail and forward to him.

[Guest guest]

Dawn,

I forget to tell you the amount of the deductible. It is $1250.00.

Aunt B

[Guest guest]

We would be able to donate some money towards a fund to help Rodney's

family. Does anyone know an address or number for the family? Thanks.

Amy

Re: New Rodney Update...Important

Do you have any idea on how much the deductable is ?........ Crystal

[Guest guest]

We would be able to donate some money towards a fund to help Rodney's

family. Does anyone know an address or number for the family? Thanks.

Amy

Re: New Rodney Update...Important

Do you have any idea on how much the deductable is ?........ Crystal

[Guest guest]

Yes, let us know the deductable amount... I am sure

all of us could do something about this. Rodney

deserves to be at home.

Dawn mom of 4, 6 and under, the youngest wcf

--- " Popillion, Amy " hiamy@...> wrote:

> We would be able to donate some money towards a

> fund to help Rodney's

> family. Does anyone know an address or number for

> the family? Thanks.

>

> Amy

>

> Re: New Rodney

> Update...Important

>

> Do you have any idea on how much the deductable is

> ?........ Crystal

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

Yes, let us know the deductable amount... I am sure

all of us could do something about this. Rodney

deserves to be at home.

Dawn mom of 4, 6 and under, the youngest wcf

--- " Popillion, Amy " hiamy@...> wrote:

> We would be able to donate some money towards a

> fund to help Rodney's

> family. Does anyone know an address or number for

> the family? Thanks.

>

> Amy

>

> Re: New Rodney

> Update...Important

>

> Do you have any idea on how much the deductable is

> ?........ Crystal

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

Yes, let us know the deductable amount... I am sure

all of us could do something about this. Rodney

deserves to be at home.

Dawn mom of 4, 6 and under, the youngest wcf

--- " Popillion, Amy " hiamy@...> wrote:

> We would be able to donate some money towards a

> fund to help Rodney's

> family. Does anyone know an address or number for

> the family? Thanks.

>

> Amy

>

> Re: New Rodney

> Update...Important

>

> Do you have any idea on how much the deductable is

> ?........ Crystal

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

[Guest guest]

Aunt B,

I didn't realize there was a certain age for a lung transplant. He is a very

brave little boy to make a choice like that. I got a Thank you card from them

to it was a very nice picture of Rodney. It just breaks my heart to see this

happening to him. Deb A

[Guest guest]

would it be possible for you to get some help from some

organizations. I am not sure what is in the area but lutheran

brotherhood, knights of columbus are couple that come to mind. I

mention this because I happen to work for a wonderful company which

has a social committee. When Cory has had several hospitalizations

they usually collect money for us(which has been a life saver) to

help with loss pay, travel cost, etc. One time the luthern

brotherhood tree matched that donation and bought us 14 cases of

ensure.

[Guest guest]

Deb,

There is not an age on getting a transplant, just not any kids surviving.

The kids need to be strong enough to survive the surgery, too. Rodney is not

strong enough.

A lot of the new treatments that have become available since he was born

would help older kids but were to harsh for a child his age. After he got

older he was able to use some of them but they were not effective enough,

early enough, to keep his lungs clear.

He has also been in some of the testing stages for some of the new drugs,

etc.

After he was older there were more treatments made available for the younger

kids.

His biggest problem was that he was so far advanced when he was born he has

fought a loosing battle all along.

At diagnoses he was at the level most kids do not reach until they are 7-8

years old. And at the time of his diagnosis, the average lifespan for cf

kids was only about 9 or 10 years old.

They did not expect him to live to be 5-6 years old when he was born.

Guess he showed them, huh?

Thank you for your caring for him.

Aunt B

[Guest guest]

There is a girl in Toronto with CF who had a lung transplant a year and a

half ago at age 10. Her success story will be in Joanne Schum's new book,

" Taking Flight " .

I know this isn't helpful for Rodney who has multiple organs involved, I

just wanted to pass on the information.

Rodney seems such a mature and wise sweetheart .... my heart breaks for him.

M

Re: New Rodney Update...Important

.. . .

> And there has never been a lung transplant patient his age survive the

> transplant.. . .

> Aunt B ------------------- to Rodney 11 wcf

[Guest guest]

Aunt B has different statistics than information I have. I am not doubting

that Rodney has been given the best treatment possible and that no matter

how compliant he could have been, his mix of genes unfortunately have left

him with severe and multiple symptoms of CF. I just want to clarify, because

there are a number of new people on the list, many with little ones, that

when my son was born 15 years ago, the median age of survival for people

with CF in Canada was 28 for males and 24 for females. It crept up to 32

years a few years ago and the Canadian Cystic Fibrosis Foundation announced

in May 2002 that the median age for survival is now just over 35 years old.

I understand that U.S. stats are similar. The stats account for the fact

that we have some wonderful golden oldies (no offense to anyone) and, sadly,

some babies and Rodneys who have a much tougher time of it. It seems,

nevertheless, that Rodney did beat the odds given to him.

M

Re: New Rodney Update...Important

.. . .

> At diagnoses he was at the level most kids do not reach until they are 7-8

> years old. And at the time of his diagnosis, the average lifespan for cf

> kids was only about 9 or 10 years old.

> They did not expect him to live to be 5-6 years old when he was born.

> Guess he showed them, huh?

> Thank you for your caring for him.

> Aunt B

[Guest guest]

Aunt B,

Why did his advance so rapidly? What type of mutation does he carry? I hope

you don't mind all of the questions but my kids are around his age. Deb A

[Guest guest]

Deb

I dont know what the mutations are just that he was very advanced in the

disease when he was born. I have asked Sherrie what mutations he has but she

said she does not know--if they told her, she does not remember.

Until about 2-3 years ago, Sherrie did not ask questions about what the

treatments were or why. She was unwilling to accept the possibility of ever

getting to the point she is now. All she asked was what to do to keep him

healthy.

Sherrie has been a very good mother and has excelled in his treatments.

He was kept in smoke free atmospheres. His clinic appointments were kept.

He has had every possible opportunity to remain a healthy child. Nobody was

allowed around him if they had a cold, contagious disease.

He only attended public school for parts of first grade and beginning of

second grade, has never been in day care or around a lot of other kids. Even

if one of the nurses had the sniffles, Sherrie insisted someone else attend

him when he was at hospital. And they complied with her without any

problems.

Other than being so far advanced at birth, we dont know why he has declined

so fast. Only that they did not think he would ever live this long.

I am trying to contact Rodney's doctor about setting up blood work for me and

our Mom to have the genetics testing. Hopefully he will tell me what

mutations Rodney has so we can find out if we have one or both of the

mutations ourselves, as carriers or a milder form of the disease.

Dont worry about your sweet girls.

Your girls are so much more healthy than Rodney has been. Your girls have

the advantage of being healthy enough for the newer treatments that Rodney

was too far advance to be of any help to him. If they were as advanced very

early in life, you may have had reason for concern.

Just keep up with the meds, therapy, etc and keep them away from germ-y,

dirty people. You have posted enough online that I know you take good care

of all three of your girls. They will be fine with your continued care.

Good luck and dont worry too much.

Aunt B ---------------------- to Rodney 11 wcf

[Guest guest]

Thanks Aunt B for the encouraging words but it jus worries me when a see a

boy who looks younger then my oldest dying and they can't do anything about

it. It's just scary. Please give his family our Blessing. Deb A

[Guest guest]

Thanks Aunt B for the encouraging words but it jus worries me when a see a

boy who looks younger then my oldest dying and they can't do anything about

it. It's just scary. Please give his family our Blessing. Deb A

[Guest guest]

Deb,

I can understand your concern. But I dont think you have to worry. Your

girls are so much more healthy than Rodney. I am sending all my best

thoughts and wishes to keep them healthy.

Aunt B ---------------- to Rodney 11 wcf

[Guest guest]

Thanks Aunt B!!!!! Deb A