Re: we leave Monday-OT-Joyce

[Guest guest]

Hold on to that 1.8% Tabitha! You are right! Someone has to be it, why not

your husband??? My prayers continue to be with you all.

s.

Re: Re: we leave Monday-OT-Joyce

Joyce,

What a kind message. I think it is wonderful all you have done for .

I have almost lost it a couple of times thinking all that little girl has went

through. You are a special person.

As far as us, we will be staying at the Heartland Inn. The American Cancer

people have paid for the room for 7 weeks M-F. Will then come home on weekends

to see the kids. I can't really think of anything we need besides for to

get better so he can be here with his family for a very long time. There is

about 1.8% chance he will live longer than a year, which is very hard for me to

take at this point. I keep telling myself that someone has to be that 1% and I

just know it is going to be . We do live in Iowa about 86 miles from Iowa

City, so the drive is doable, but would not like to do it everyday for

treatment. is still very tired and weak from brain surgery so riding in a

car for 3 hours a day is just not going to work.

Tabitha

childrenloveall wrote:

Hi Tabitha,

I am so sorry for all you and your family are going through right

now. I can't even imagine all you are dealing with and the

incredible emotions you must be feeling. I don't know where you

live, but I'm thinking it might be somewhere close to Iowa. Is there

anything at all that you can think of that some of us could pull

together and do for you at this time that would help you? I mean

this from my heart. Will you be staying at the RMH when you and

are out there? Thanks for your words of wisdom to us about

remembering what truly matters in life - time with our loved ones. I

know sometimes I get caught up in the little things in life that

really don't matter and forget to focus on the bigger picture. You

are an amazing person and hopefully I'll get to meet you and your

family someday soon. Please keep us posted.

Sincerely,

Joyce

4 years old, bcf

>

> Well, first I am going to say sorry for I know I will ramble in

this email, for my thoughts are going through my head so fast.

>

> We leave Monday for our 7 week adventure in Iowa City with my

husband chemo and radiation. Hopefully this will prolong his life

and make him more comfortable. It's been a rough month here. It has

been 3 weeks since the kids have stayed at home with 7 more on the

way. We try to get them to stay a couple of hours everyday, but when

is not feeling well and has to have a tremendous amount of care

it is hard for me to have both of them here. They cry and scream

when we have to take them to grandma and grandpa's.

>

> Karter now has another sore on his foot. Which I will try to get

healed before we leave Monday. No promises to either grandma on

that. Just not enough time for it to heal. It is relatively small

compared to the others he has had. Will try to call Monday and

see if I can get the new pads Christee was talking about. In the

meantime grandma will be up at nights with him. We are also getting

to the end of the shoes. Was hoping we could make in till the end of

July. Don't know now. We have about a 1/4 of an inch.

>

> Now as a last thought of mine. We have some wonderful mothers on

this group. Just a thought as we seem to go by with our everyday

lifes. Spend as much time with your families as you can. All of

you together. I think back and think how wonderful it was that

went fishing every Sat. and now I just think that I should have went

with him. All those sat. that we were not as a family. At 26 you

think you have 50 years of Sat. and don't think much of one day.

Those 50 more years have been taken from me and my children, so I ask

you all, as we are doing, make everyday special with your families.

Now that I am crying once again on to the next.

>

> To this group: We will forever be grateful in finding you.

Leading us to Dr. P., helping with sores and finding the s.

You to are like family and I truely care about everyone on here. It

was here that made our journey with Karters feet wonderful. He will

be two in the end of July and he is truely a little boy, thanks to

all of you. THANK YOU.

>

> Tabitha

> hubby brain tumor

> Brittanie 6 years

> Karter 22 months blcf

>

>

> ---------------------------------

> Feel free to call! Free PC-to-PC calls. Low rates on PC-to-Phone.

Get Yahoo! Messenger with Voice

>

>

[Guest guest]

Tabitha, There is hope to be in the 1%. On top of the CF, Logan had some

markers for a list of 14 different genetic disorders-some fatal, some just

inconvenient. He had a 1% chance of not having any of them. After two of

the longest weeks of my life (that's how long it took for the testing to

come back), we found out he was in the 1%! My father just kept reminding me

that 1% sounds impossible, until you think in terms of 1 in 100. It can

happen, and I hope it happens for !!

and Logan

Re: Re: we leave Monday-OT-Joyce

Hold on to that 1.8% Tabitha! You are right! Someone has to be it, why not

your husband??? My prayers continue to be with you all.

s.

Re: Re: we leave Monday-OT-Joyce

Joyce,

What a kind message. I think it is wonderful all you have done for

. I have almost lost it a couple of times thinking all that little

girl has went through. You are a special person.

As far as us, we will be staying at the Heartland Inn. The American

Cancer people have paid for the room for 7 weeks M-F. Will then come home

on weekends to see the kids. I can't really think of anything we need

besides for to get better so he can be here with his family for a very

long time. There is about 1.8% chance he will live longer than a year,

which is very hard for me to take at this point. I keep telling myself that

someone has to be that 1% and I just know it is going to be . We do

live in Iowa about 86 miles from Iowa City, so the drive is doable, but

would not like to do it everyday for treatment. is still very tired

and weak from brain surgery so riding in a car for 3 hours a day is just not

going to work.

Tabitha

childrenloveall wrote:

Hi Tabitha,

I am so sorry for all you and your family are going through right

now. I can't even imagine all you are dealing with and the

incredible emotions you must be feeling. I don't know where you

live, but I'm thinking it might be somewhere close to Iowa. Is there

anything at all that you can think of that some of us could pull

together and do for you at this time that would help you? I mean

this from my heart. Will you be staying at the RMH when you and

are out there? Thanks for your words of wisdom to us about

remembering what truly matters in life - time with our loved ones. I

know sometimes I get caught up in the little things in life that

really don't matter and forget to focus on the bigger picture. You

are an amazing person and hopefully I'll get to meet you and your

family someday soon. Please keep us posted.

Sincerely,

Joyce

4 years old, bcf

>

> Well, first I am going to say sorry for I know I will ramble in

this email, for my thoughts are going through my head so fast.

>

> We leave Monday for our 7 week adventure in Iowa City with my

husband chemo and radiation. Hopefully this will prolong his life

and make him more comfortable. It's been a rough month here. It has

been 3 weeks since the kids have stayed at home with 7 more on the

way. We try to get them to stay a couple of hours everyday, but when

is not feeling well and has to have a tremendous amount of care

it is hard for me to have both of them here. They cry and scream

when we have to take them to grandma and grandpa's.

>

> Karter now has another sore on his foot. Which I will try to get

healed before we leave Monday. No promises to either grandma on

that. Just not enough time for it to heal. It is relatively small

compared to the others he has had. Will try to call Monday and

see if I can get the new pads Christee was talking about. In the

meantime grandma will be up at nights with him. We are also getting

to the end of the shoes. Was hoping we could make in till the end of

July. Don't know now. We have about a 1/4 of an inch.

>

> Now as a last thought of mine. We have some wonderful mothers on

this group. Just a thought as we seem to go by with our everyday

lifes. Spend as much time with your families as you can. All of

you together. I think back and think how wonderful it was that

went fishing every Sat. and now I just think that I should have went

with him. All those sat. that we were not as a family. At 26 you

think you have 50 years of Sat. and don't think much of one day.

Those 50 more years have been taken from me and my children, so I ask

you all, as we are doing, make everyday special with your families.

Now that I am crying once again on to the next.

>

> To this group: We will forever be grateful in finding you.

Leading us to Dr. P., helping with sores and finding the s.

You to are like family and I truely care about everyone on here. It

was here that made our journey with Karters feet wonderful. He will

be two in the end of July and he is truely a little boy, thanks to

all of you. THANK YOU.

>

> Tabitha

> hubby brain tumor

> Brittanie 6 years

> Karter 22 months blcf

>

>

> ---------------------------------

> Feel free to call! Free PC-to-PC calls. Low rates on PC-to-Phone.

Get Yahoo! Messenger with Voice

>

>

[Guest guest]

Tabitha,

Hold on to that hope. There are new treatments and discoveries coming

out all the time. My family will keep you and yours in our prayers. Please let

us know if there's anything we can do to help you during this tough time. Do

the kids grandparents have a computer? If so, maybe show them this group, so we

can help with any questions they might have about Karter's shoes or sores or

anything. We'll be there to support you anyway that we can.

- Michele

5/18/02 and Maddie bcf s 15/7

---------------------------------

Feel free to call! Free PC-to-PC calls. Low rates on PC-to-Phone. Get Yahoo!

Messenger with Voice

[Guest guest]

You are amazing Tabitha. Here you are going through so much and you

are thinking of us and our situation. Thank you for what you said

about and I, but really what we've done is nothing special

it's just what any other parent would do for their child as well.

I really think you are right, could be that 1%. Somebody has

to be it and I believe it is going to be your precious husband. I

don't know all the details of Lance Armstrong's case, but I do

believe reading his cancer had spread to his brain and many other

parts of his body with him given no chance to beat it much less

survive very long and look at him today. I do believe in miracles

and I hope and pray your family will see that happen.

Please know we are pulling for your husband through all of this and

thinking of you and your children. Take care and please contact me

if you need anything. I'm just sorry I live so far away.

Take care!

Joyce

> >

> > Well, first I am going to say sorry for I know I will ramble in

> this email, for my thoughts are going through my head so fast.

> >

> > We leave Monday for our 7 week adventure in Iowa City with my

> husband chemo and radiation. Hopefully this will prolong his life

> and make him more comfortable. It's been a rough month here. It

has

> been 3 weeks since the kids have stayed at home with 7 more on the

> way. We try to get them to stay a couple of hours everyday, but

when

> is not feeling well and has to have a tremendous amount of

care

> it is hard for me to have both of them here. They cry and scream

> when we have to take them to grandma and grandpa's.

> >

> > Karter now has another sore on his foot. Which I will try to

get

> healed before we leave Monday. No promises to either grandma on

> that. Just not enough time for it to heal. It is relatively small

> compared to the others he has had. Will try to call Monday

and

> see if I can get the new pads Christee was talking about. In the

> meantime grandma will be up at nights with him. We are also

getting

> to the end of the shoes. Was hoping we could make in till the end

of

> July. Don't know now. We have about a 1/4 of an inch.

> >

> > Now as a last thought of mine. We have some wonderful mothers

on

> this group. Just a thought as we seem to go by with our everyday

> lifes. Spend as much time with your families as you can. All of

> you together. I think back and think how wonderful it was that

> went fishing every Sat. and now I just think that I should have

went

> with him. All those sat. that we were not as a family. At 26 you

> think you have 50 years of Sat. and don't think much of one day.

> Those 50 more years have been taken from me and my children, so I

ask

> you all, as we are doing, make everyday special with your

families.

> Now that I am crying once again on to the next.

> >

> > To this group: We will forever be grateful in finding you.

> Leading us to Dr. P., helping with sores and finding the

s.

> You to are like family and I truely care about everyone on here.

It

> was here that made our journey with Karters feet wonderful. He

will

> be two in the end of July and he is truely a little boy, thanks to

> all of you. THANK YOU.

> >

> > Tabitha

> > hubby brain tumor

> > Brittanie 6 years

> > Karter 22 months blcf

> >

> >

> > ---------------------------------

> > Feel free to call! Free PC-to-PC calls. Low rates on PC-to-

Phone.

> Get Yahoo! Messenger with Voice

> >

> >

[Guest guest]

I just wanted to add that I too will be thinking about and praying for your

family. At my 's 20 week u/s, they found the clubfeet and other issues.

One was a small cerebellum. It was still small and not catching up at 24,38,

and 30 weeks. The doctor told us at this point because he knew we just didn't

believe him that it would not catch up at this point. It had never happened to

him and as far as he knew there was nothing to cause it to catch up, so it just

wouldn't. He was a very experienced and respected doctor, who I know was trying

to prepare us to have a child with mental impairments.

However, at the 30 week u/s he found chordee with hypospadias, so we were to

come back for an u/s so a urologist could look at it. At this u/s, only 2 weeks

later, the doctor who I hated, was absolutely speechless. The cerebellum, he

said could not catch up in growth, had and was normal. At that point, he told

us that he didn't know what to expect.

Now has given us a run for our money since he has been born, with

doctor visits and everything. We found out in April that his apnea was caused

by seizures, so again we were worried about the brain, but everything checked

out great even at 18 months old.

Family is the most important thing, and no matter how much time you spend,

you always want more. Just know that you are a very strong mommy and wife, and

you will make it through this! I will continue to keep you in my thoughts and

prayers. You will find the strength you need to get through this. Good luck

over the next 7 weeks. I hope things go as perfectly as they can.

11/19/04 VATER, with bcf, seizures, and farsighted

and Rich wrote:

Tabitha, There is hope to be in the 1%. On top of the CF, Logan had some

markers for a list of 14 different genetic disorders-some fatal, some just

inconvenient. He had a 1% chance of not having any of them. After two of

the longest weeks of my life (that's how long it took for the testing to

come back), we found out he was in the 1%! My father just kept reminding me

that 1% sounds impossible, until you think in terms of 1 in 100. It can

happen, and I hope it happens for !!

and Logan

Re: Re: we leave Monday-OT-Joyce

Hold on to that 1.8% Tabitha! You are right! Someone has to be it, why not

your husband??? My prayers continue to be with you all.

s.

Re: Re: we leave Monday-OT-Joyce

Joyce,

What a kind message. I think it is wonderful all you have done for

. I have almost lost it a couple of times thinking all that little

girl has went through. You are a special person.

As far as us, we will be staying at the Heartland Inn. The American

Cancer people have paid for the room for 7 weeks M-F. Will then come home

on weekends to see the kids. I can't really think of anything we need

besides for to get better so he can be here with his family for a very

long time. There is about 1.8% chance he will live longer than a year,

which is very hard for me to take at this point. I keep telling myself that

someone has to be that 1% and I just know it is going to be . We do

live in Iowa about 86 miles from Iowa City, so the drive is doable, but

would not like to do it everyday for treatment. is still very tired

and weak from brain surgery so riding in a car for 3 hours a day is just not

going to work.

Tabitha

childrenloveall wrote:

Hi Tabitha,

I am so sorry for all you and your family are going through right

now. I can't even imagine all you are dealing with and the

incredible emotions you must be feeling. I don't know where you

live, but I'm thinking it might be somewhere close to Iowa. Is there

anything at all that you can think of that some of us could pull

together and do for you at this time that would help you? I mean

this from my heart. Will you be staying at the RMH when you and

are out there? Thanks for your words of wisdom to us about

remembering what truly matters in life - time with our loved ones. I

know sometimes I get caught up in the little things in life that

really don't matter and forget to focus on the bigger picture. You

are an amazing person and hopefully I'll get to meet you and your

family someday soon. Please keep us posted.

Sincerely,

Joyce

4 years old, bcf

>

> Well, first I am going to say sorry for I know I will ramble in

this email, for my thoughts are going through my head so fast.

>

> We leave Monday for our 7 week adventure in Iowa City with my

husband chemo and radiation. Hopefully this will prolong his life

and make him more comfortable. It's been a rough month here. It has

been 3 weeks since the kids have stayed at home with 7 more on the

way. We try to get them to stay a couple of hours everyday, but when

is not feeling well and has to have a tremendous amount of care

it is hard for me to have both of them here. They cry and scream

when we have to take them to grandma and grandpa's.

>

> Karter now has another sore on his foot. Which I will try to get

healed before we leave Monday. No promises to either grandma on

that. Just not enough time for it to heal. It is relatively small

compared to the others he has had. Will try to call Monday and

see if I can get the new pads Christee was talking about. In the

meantime grandma will be up at nights with him. We are also getting

to the end of the shoes. Was hoping we could make in till the end of

July. Don't know now. We have about a 1/4 of an inch.

>

> Now as a last thought of mine. We have some wonderful mothers on

this group. Just a thought as we seem to go by with our everyday

lifes. Spend as much time with your families as you can. All of

you together. I think back and think how wonderful it was that

went fishing every Sat. and now I just think that I should have went

with him. All those sat. that we were not as a family. At 26 you

think you have 50 years of Sat. and don't think much of one day.

Those 50 more years have been taken from me and my children, so I ask

you all, as we are doing, make everyday special with your families.

Now that I am crying once again on to the next.

>

> To this group: We will forever be grateful in finding you.

Leading us to Dr. P., helping with sores and finding the s.

You to are like family and I truely care about everyone on here. It

was here that made our journey with Karters feet wonderful. He will

be two in the end of July and he is truely a little boy, thanks to

all of you. THANK YOU.

>

> Tabitha

> hubby brain tumor

> Brittanie 6 years

> Karter 22 months blcf

>

>

> ---------------------------------

> Feel free to call! Free PC-to-PC calls. Low rates on PC-to-Phone.

Get Yahoo! Messenger with Voice

>

>