Update on

May 6, 2001

Joleen

I'm glad is doing well. I can see why you would be

frustrated with your clothes right now. At least the warm weather is

coming. Maybe you can get out and take some walks with .

Enjoy your time w/ before Cam gets back.

Pam

May 6, 2001

Hi Joleen,

I'm so glad to hear that you and are doing well. Cam is probably

having the best time of all of you! Grandparents are wonderful for

two-on-one spoiling!

maria

Re: update on

> Hi all,

>

> I " m trying to get caught up still! I " m so tired all the time and can't

nurse

> in my chair by the computer, so I haven't figured out how to be

> online and the mom of 2 yet, but hopefully I'll have abetter system soon!

> is doing great. She's over 7 pounds now, according to my baby

> scale, I think it's accurate. And growing out of her preemie clothes!

She's

> at a funny stage, too big for the preemie sizes, but not big enough for

0-3

> month clothes! They just don't make clothes for small babies! We keep

her

> up from about 9 - 11 at night, then feed her, and she sleeps until 4 which

is

> nice. Then she gets up at about 7, so I can't complain. She's wakes up

for

> about 2 hours at a time during the day and just wants to nurse and nurse,

so

> that cuts up my days, but there's nothing like holding a newborn. I just

> want to cuddle her all the time. I wish I didn't have anything else to

do!

> Her baptism is next Sun. so I have to get the house really really clean

this

> week!

> I'm doing pretty well, too. I'm very tired, but I think all mommies

of

> newborns are! I hate all my clothes, you've probably already read my post

to

> , so I'm still huge, but maternity clothes look stupid, or rather

make

> me look 6 months pg and yet, I don't have anything else that fits. I

bought

> a couple of things this week, but hate the sizes! Maybe I'll just cut the

> tags out so I forget! Otherwise we're great! Cam's having fun at Disney

> World and it's nice to only have one child to take care of, but I miss him

> and can't wait for him to get back! I'm glad he's getting someone on one

> attention and I'm sure his grandparents are thoroughly spoiling him!

> So, that's it around here! Time to feed - again!

>

> Joleen

>

May 7, 2001

That's awesome that you are able to get some sleep!

I think that is such a wonderful idea that Cam's grandparents took him to

Disney World for a little personal spoiling time!

-AmyR

May 7, 2001

Hi Joleen!!

It sounds like is on the same sleeping schedule as Mikaela!! I

just love it, but I need to go to bed when she does, as it is, I'm

usually up another hour, but I'm getting used to 6 hours of sleep a

night!!! Oh, do you have one of those boppy pillows??? My cousin has

one and swears by it, then you could nurse and be on the computer

too....(just kidding) I saw them at Target last time I was there. Oh, I

bought a pair of shorts the other day too (two sizes bigger than

normal...urghh...I'm with you on the cutting the tags out) Oh, and

Mikaela has a couple of sleepers that are already too small if you want

I could mail them to you, just let me know, ok?

Vicki

JBCRobins@... wrote:

>

> Hi all,

>

> I " m trying to get caught up still! I " m so tired all the time and can't nurse

> in my chair by the computer, so I haven't figured out how to be

> online and the mom of 2 yet, but hopefully I'll have abetter system soon!

> is doing great. She's over 7 pounds now, according to my baby

> scale, I think it's accurate. And growing out of her preemie clothes! She's

> at a funny stage, too big for the preemie sizes, but not big enough for 0-3

> month clothes! They just don't make clothes for small babies! We keep her

> up from about 9 - 11 at night, then feed her, and she sleeps until 4 which is

> nice. Then she gets up at about 7, so I can't complain. She's wakes up for

> about 2 hours at a time during the day and just wants to nurse and nurse, so

> that cuts up my days, but there's nothing like holding a newborn. I just

> want to cuddle her all the time. I wish I didn't have anything else to do!

> Her baptism is next Sun. so I have to get the house really really clean this

> week!

> I'm doing pretty well, too. I'm very tired, but I think all mommies of

> newborns are! I hate all my clothes, you've probably already read my post to

> , so I'm still huge, but maternity clothes look stupid, or rather make

> me look 6 months pg and yet, I don't have anything else that fits. I bought

> a couple of things this week, but hate the sizes! Maybe I'll just cut the

> tags out so I forget! Otherwise we're great! Cam's having fun at Disney

> World and it's nice to only have one child to take care of, but I miss him

> and can't wait for him to get back! I'm glad he's getting someone on one

> attention and I'm sure his grandparents are thoroughly spoiling him!

> So, that's it around here! Time to feed - again!

>

> Joleen

>

May 9, 2001

Joleen and ,

I am so happy to hear is thriving as she should. I am sad to hear you are SO tired! I am thinking that must come with the territory, especially now that you have to "spread" yourself a little thinner these days!!

Keep us updated!!

{{{{{{{{{{{HUGS}}}}}}}}

e

>From: JBCRobins@... >Reply-To: PregnancyBabiesAfterEctopic >To: PregnancyBabiesAfterEctopic >Subject: Re: update on >Date: Sun, 6 May 2001 16:34:11 EDT > >Hi all, > >I"m trying to get caught up still! I"m so tired all the time and can't nurse > in my chair by the computer, so I haven't figured out how to be >online and the mom of 2 yet, but hopefully I'll have abetter system soon! > is doing great. She's over 7 pounds now, according to my baby >scale, I think it's accurate. And growing out of her preemie clothes! She's >at a funny stage, too big for the preemie sizes, but not big enough for 0-3 >month clothes! They just don't make clothes for small babies! We keep her >up from about 9 - 11 at night, then feed her, and she sleeps until 4 which is >nice. Then she gets up at about 7, so I can't complain. She's wakes up for >about 2 hours at a time during the day and just wants to nurse and nurse, so >that cuts up my days, but there's nothing like holding a newborn. I just >want to cuddle her all the time. I wish I didn't have anything else to do! >Her baptism is next Sun. so I have to get the house really really clean this >week! > I'm doing pretty well, too. I'm very tired, but I think all mommies of >newborns are! I hate all my clothes, you've probably already read my post to >, so I'm still huge, but maternity clothes look stupid, or rather make >me look 6 months pg and yet, I don't have anything else that fits. I bought >a couple of things this week, but hate the sizes! Maybe I'll just cut the >tags out so I forget! Otherwise we're great! Cam's having fun at Disney >World and it's nice to only have one child to take care of, but I miss him >and can't wait for him to get back! I'm glad he's getting someone on one >attention and I'm sure his grandparents are thoroughly spoiling him! > So, that's it around here! Time to feed - again! > >Joleen Get your FREE download of MSN Explorer at http://explorer.msn.com

November 27, 2003

Joyce, what an awful time you are going through. I am so sorry to

hear about all your heartache...sometimes, I know, it seems like we

just can't go on. But we do, Joyce, we do. You are the strongest

support system that has and with you by his side, and God's

blessing, all will work out as it's supposed to.

I will keep you and your family in my prayers. Hang in there. When

he pulls through, you will look back on this together as another one

of those big bumps on this road called living with cancer. Key word

though...living!!!

God Bless.

Monika

> Hi Friends and Happy Thanksgiving,

> I have kinda of been reading messages and then just shutting down

> the computer. For the last month has been in such horrible

> rectal pain that it finally got the best of him. He started

running

> fevers and then cold sweats. Quit eating 3 weeks ago and had to

> force fluids down him. His Oncologist just said it time to do a

> chemo rest. Xeloda obviously not working, his las CEA was 6.8 up

> one point. What the Onc did not know was that he was not taking

> them as directed. He scheduled him for 3 more aranesp shots to

> build him up. I kept calling and asking for pain medication. He

> was given 2 Lortab every 4 hours and that did nothing. Then they

> added a morphine pill every 12 hours and that did nothing. Finally

> they tripled the morphine and he threw it all up that night.

> He had a MRI of the lower spine done and that came back negative

> thank God. They ran a C-difficule test and for a week no results.

> Had him on Augumentin and then switched to Flagyl. Still no pain

> relief and still running fever.

> finally said he could not bear the pain any longer and just

> go ahead and schedule the colostomy. He was supposed to have a

> colonoscopy Monday and see the Surgeon Thursday. We had

reservation

> for beach front rooms for this whole week and was going to take the

> air boat. By Sunday he was so sick I had my daughter get us out of

> the reservations. I kept calling our Oncologist who I used to

> really like all day Monday asking to just please admit him to

> hospital and get some fluids in him. To make a long story short I

> started calling Monday morning with my plea and sat patiently by

the

> phone. One of my best friends 7yr old grandaughter was killed by a

> horse. She was drug for over a mile and was totally unrecognizable

> when the fouond her. Very sad story.

> I changed my message on my answering machine telling doctor to call

> my mobile while I went to buy flowers and go by funeral home. Came

> home and waited until 7pm for them to call. Nurse told me it was

> out of Oncologist hands and we need to call a surgeon to admit

him.

> I called the surgeons answering service and they said if we had not

> seen him in 2 years they were not allowed to page him unless it was

> a emergency. I told the dumb girl that the Onc said since

> could not stand or sit without feeling pressure like

> something was going to rupture I considered it a emergency. She

> said that was a supervisor call. I asked her to show me the

> courtesy of a call back from her regardless. I never got one.

> Tuesday morning he was getting lifeless. I called my kids and said

> they better get here fast. The surgeon finally called and we made

> him a bed in the back of my Tahoe and off we went. They took his

> blood pressure and it was 80over 40 and he was fading fast.

> The surgeon ordered a CT scan and really thought he had a bad

abcess

> that needed draining but I dont guess that was what it was. They

> put a catheter in and he immediately filled the bag to the top and

> they nurse said that was awful. Today they started him on Go

> Lightly for the colostomy. He is so weak he cant get up or sit

up.

> I stayed until dark with my back aching and gagging from the

smell.

> He still has about 3/4 gallon to drink. I don't know how the

nurses

> do it. THey have been sweethearts. I also grabbed the first

> private room available before I left. His other room was the size

> of a matchbox.

> We have not seen the nurse that marks the colostomy spot and I sure

> hope she shows up or I am really going to be in trouble. I just

> hope he has the strength left to make it thru the operation.

> I noticed a lot of posting going on and am just to tired to read

> them all. I almost talked myself out of writing this post, but I

> really wanted to wish all of you a Very Happy Thanksgiving.

> Best Wishes to all,

> Joyce

December 13, 2003

Just wanted to say hello to everyone. I have to be truthful and

admit that I have been so busy that lately I log on late at night

and skim over the posts. 's favorite sister is coming next

week and I have been trying to make the house look half presentable.

is finally coming to terms with the colostomy. I have been

throwing all his favorite foods at him and he is eating me out of

house and home. The good thing about it is I was fully stocked and

ready for his appetite because for 3 weeks he ate nothing.

The last time we saw the Onc was Nov. 17th and he told his

CEA had risen to 6.2 and obviously it was not working. As you all

know he ended up in the hospital on Nov. 25th with horrible

infection and had a colostomy. The Onc came to see him and told him

to make a follow up with him and he really had no other miracles to

pull out of his pocket other than the drip chemo.

I called to make the appt. and was told to bring him back on Jan

5th. Hospital discarge orders said to follow up with GP and have

his lab work done. We went for blood work wednesday and I got

miffed with the secretary when she said they needed a good reason

for running the lab work. Soooooo when I told her they wanted a

complete CBC and PT/INR, I threw in that they also needed a CEA. I

thought since a few weeks ago they were wanting me to act like the

doctor and nurse I would order the CEA. If I get caught I will just

have to pay the bill. It was worth it!!!!!! We saw the GP thursday

and he said his white count was almost normal and the red was just a

little low. His hematocrit was perfect and that is what he really

pays attention to. We got home and I remembered that I ordered a

CEA and called back for the result and almost messed my britches.

It was 3.3!!!!!!!!!!!!!!! God, help me and I hope I am not getting

excited for nothing. His last IMRT radiation therapy was Oct. 15th

and they told us to come back Dec. 30th and they would take another

look. The infection seems to be clearing up in the rectum and no

fever since he came home from the hospital. I am hoping the IMRT is

working and that the horrible infection was part of the reason for

the rise in CEA. He has not had any chemo or Xeloda since

Nov.14th. I am really glad now that we dont see the Onc until after

the Holidays. If he is going to burst my bubble at least we might

be able to enjoy Christmas. On his birthday Aug. 1 he was diagnosed

with DVT of the left leg and on Thanksgiving he spent it drinking a

gallon of Go Lightly. I think he deserves at least one good holiday

a year.

OK folks, I know I am being optimestic and what I am hoping for is a

turnaround on this site. If you will notice it seems to run in

cycles here and its time for all of us to have some happiness.

Best Wishes and Happy Holidays to all,

Joyce

December 13, 2003

WOW that's super. good for you!

Glad to hear things are looking up for you both.

God Bless

Narice

December 13, 2003

Joyce,

That's goods news. I think you're both overdue for a peaceful and

joyful holiday.

Best wishes,

Kat

> Just wanted to say hello to everyone. I have to be truthful and

> admit that I have been so busy that lately I log on late at night

> and skim over the posts. 's favorite sister is coming next

> week and I have been trying to make the house look half presentable.

> is finally coming to terms with the colostomy. I have been

> throwing all his favorite foods at him and he is eating me out of

> house and home. The good thing about it is I was fully stocked and

> ready for his appetite because for 3 weeks he ate nothing.

> The last time we saw the Onc was Nov. 17th and he told his

> CEA had risen to 6.2 and obviously it was not working. As you all

> know he ended up in the hospital on Nov. 25th with horrible

> infection and had a colostomy. The Onc came to see him and told

him

> to make a follow up with him and he really had no other miracles to

> pull out of his pocket other than the drip chemo.

> I called to make the appt. and was told to bring him back on Jan

> 5th. Hospital discarge orders said to follow up with GP and have

> his lab work done. We went for blood work wednesday and I got

> miffed with the secretary when she said they needed a good reason

> for running the lab work. Soooooo when I told her they wanted a

> complete CBC and PT/INR, I threw in that they also needed a CEA. I

> thought since a few weeks ago they were wanting me to act like the

> doctor and nurse I would order the CEA. If I get caught I will

just

> have to pay the bill. It was worth it!!!!!! We saw the GP

thursday

> and he said his white count was almost normal and the red was just

a

> little low. His hematocrit was perfect and that is what he really

> pays attention to. We got home and I remembered that I ordered a

> CEA and called back for the result and almost messed my britches.

> It was 3.3!!!!!!!!!!!!!!! God, help me and I hope I am not getting

> excited for nothing. His last IMRT radiation therapy was Oct. 15th

> and they told us to come back Dec. 30th and they would take another

> look. The infection seems to be clearing up in the rectum and no

> fever since he came home from the hospital. I am hoping the IMRT

is

> working and that the horrible infection was part of the reason for

> the rise in CEA. He has not had any chemo or Xeloda since

> Nov.14th. I am really glad now that we dont see the Onc until

after

> the Holidays. If he is going to burst my bubble at least we might

> be able to enjoy Christmas. On his birthday Aug. 1 he was

diagnosed

> with DVT of the left leg and on Thanksgiving he spent it drinking a

> gallon of Go Lightly. I think he deserves at least one good

holiday

> a year.

> OK folks, I know I am being optimestic and what I am hoping for is

a

> turnaround on this site. If you will notice it seems to run in

> cycles here and its time for all of us to have some happiness.

> Best Wishes and Happy Holidays to all,

> Joyce

December 14, 2003

Joyce: You both deserve a good holiday. Enjoy it,don't get hectic,slow and

easy

and it's his life you are fighting for,so in that sense don't let them get to

you. It's

good to let go now and then,shows your'e human. We all have off days,things

kind

of get to us. I skim through sometimes,lack of time,too many irons in the

fire. I

read abot the Dr.s sometimes cutting chemo short or lowering doseage and

continuing because they go for quality..I agree.. Sometimes a rest is good.

Enjoy

your holiday and may peace,hope,health and happiness be your new years gift.

Nick & Jane

December 14, 2003

Great news Joyce. Hope your holiday season stays shiny and bright,

and that can dig in to a wonderful dinner over the holidays.

Laurie