Nani/SheriRUth/Gentylwind Update - Page 11

gentylwind · 06-12-2005, 06:47 PM

Oh I am eating. Thanks to Emily and lots of going out. I chowed this weekend. I am going to get back on the SNARK challenge starting tomorrow, back to exercising. Between Emily and Joe I have been well lectured that this situation is not going away any time soon and i have got to learn to wrap my normal life around it.

EmilyBlanche · 06-12-2005, 06:53 PM

I sound so pleasant.

Oh, and that thing.. that we were discussing..

PM.

AliMay · 06-12-2005, 06:59 PM

(((((((sheri)))))))))

gentylwind · 06-12-2005, 07:00 PM

(((((( ali-cuteness ))))))))

Shirrell · 06-12-2005, 07:03 PM

Prayers for Joseph for remission.

surfergirl · 06-12-2005, 08:35 PM

parying for Joseph's remission!!!

So glad you and ali and emily had fun!!! thats wonderful!

Angebee · 06-12-2005, 08:53 PM

Sheri. We can't wait to have you back as a regular Snarker again. You just gotta get Red and everyone else back in to it. Those punks might be bailing on us.

DD finished her card for Joseph. I gotta tell ya - it's pretty blunt! She say's "don't ever get sick again" or something like that. Oh and she made him a bookmark that says "I think you should start reading".

I guess that's how 7 yr olds think!

Dh and I and the girls pray for Joseph and you all every night.

parrot · 06-13-2005, 07:34 AM

Let me know when you're ready to chow at Luna de Noche.

Yes, this is going to be a long road. I was telling you about my DH's cousin who has a child w/ cancer at Children's.... It will be a year next month that they've been fighting it (and he has beat the odds and is in remission!). They say that your life isn't the same, but you do figure out a new rhythm and get through it with a new definition of "normal". Right now everything is shocking and scary. ((huge hugs))

What else do you and Joeseph need? I can make another hospital run this week.

gentylwind · 06-13-2005, 11:18 AM

You are such a doll parrot....I can't think of anything I need more than adequate sleep right now.

I will let you know as soon as the margarita fix becomes a "gotta happen" kind of thing.

gentylwind · 06-13-2005, 11:31 AM

Monday morning update

Rough night last night. Joseph is having pretty bad pain in his belly from the mucositis and they are starting him on a narcotic drip this morning to help him out. The nurse last night refused to put him on one and the doctor was not happy about that this morning. I was not either.

He had a lumbar puncture this morning to check for cancer cells in the spinal fluid and to administer his last dose of chemo for this round. He is starting to show the effects of the chemo now. His hair is just barely starting to thin. He should lose it all by the end of the week we are told. He has been having nightmares, a result of the chemo also, and a bit of mildly aggressive psychosis that just generally is making him grumpy, uncooperative and the like. He reminds me a of a two year old right now. Everything makes him dissolve into tears or he gets very surly and demanding about unreasonable things. I can't really blame him at all, though it is hard not to get sharp with him to mind his manners. I have to remind myself how ill he is and that this is not really him...and even if it was not the medications making him be this way, I personally would probably be that way just from being stuck in hospital isolation for a week and a half with no end in sight.

I didn't sleep much last night, came straight to work from the hospital and will have to go straight back when work is done. I stink, I have greasy hair, no make up and feel ugly. I need a shower. My clothes need washing. I am wearing my morning coffee on the front of my white Tshirt.

But Joe is coming in two weeks and that has me smiling and content. I feel much stronger from the time off over the weekend.

lovemykids · 06-13-2005, 11:59 AM

hospital have a shower you can use? I'll do your laundry

theprettyredhead · 06-13-2005, 12:31 PM

*hides in Joe's suitcase so I can give ya a hug*

gentylwind · 06-13-2005, 12:37 PM

You honestly don't want to hug me right now...I promise.....

mamagiff · 06-13-2005, 01:11 PM

I'm so sorry your son is having such a rough time right now. Hope you get some good news soon. Prayers and continuing good thoughts for you and all of your boys.

CaliforniaGirl · 06-13-2005, 01:46 PM

Quote:

Originally Posted by gentylwind

You honestly don't want to hug me right now...I promise.....

Ha! Whats wrong Sheri? Bathing in the hospital's public bathroom with a washcloth doesn't leave you feeling clean and refreshed?! I thought for sure I was going to have to grow dreadlocks after week 2.

I'm glad you're getting tiny breaks here and there. We still love your coffee stained greasy haired stanky self - no matter what.

parrot · 06-13-2005, 03:56 PM

You can come shower at my house -- seriously, I'm just on the other side of LBJ... You have my number if you're interested.

gentylwind · 06-13-2005, 06:25 PM

Thanks parrot

For now I am managing okay here. I just feel a bit shabby, but Joseph doesn't seem to care and that is all that matters. All the nurses are girls anyway, so nobody to flirt with

Stanky....

what a great word!

EmilyBlanche · 06-13-2005, 06:37 PM

how was today?

gentylwind · 06-13-2005, 06:40 PM

I worked most of the day, but he has been in terrible pain and continues to be grumpy. His Granny is here now too and she always seems to bring out the best in him. He is behaving better right now than he has all day long....even let us get him up long enough to change his bedding. All because of Granny (Stewart's Mom). I

Granny.

Majerus · 06-13-2005, 06:45 PM

((((Joseph))))

Lori · 06-13-2005, 06:53 PM

Prayers for a comfortable night.

Angebee · 06-13-2005, 07:05 PM

((((Joseph)))) and (((((Sheri))))

We are thinking about you tonight. I hope you both get some rest.

How are the other boys holding up?

gentylwind · 06-13-2005, 07:32 PM

The other boys are knee deep in summer day camps and have been doing great. I have not gotten to see them as much as I would like and I miss them.

aki · 06-13-2005, 07:44 PM

(((((Sheri and Joseph))))

gentylwind · 06-13-2005, 07:46 PM

aki!

I just want you to know....

the "fart blower" that came with the whoopie cushion ws responsible for correcting Joseph collapsed lungs last week.

aki · 06-13-2005, 07:55 PM

Quote:

Originally Posted by gentylwind

aki!

I just want you to know....

the "fart blower" that came with the whoopie cushion ws responsible for correcting Joseph collapsed lungs last week.

I am so glad he enjoyed it and REALLY glad it helped him!!! Sorry I didn't put more LC treats in the basket!!! If you need anything else, please don't hesitate to holler!!

WE LOVE YOU!!!!!

gentylwind · 06-13-2005, 07:59 PM

I love you too. Truly.

I just can't say enough how much all the support, love, prayers have mattered to me. You have no idea how many hard, hard spots Y'all have gotten me through to date. Knowing people think well of me gives me a standard to live up to and that is not a bad thing at all. Knowing I am supported and loved also gives me so much strength.

I have to edit this to add.....y'all...the cards and the care packages...some days those are the ONLY things that gets a smile or any energy out of Joseph. He adores opening them up and reading them, then he tells me where on the wall he wants each and every one. And in turn, that makes it the only things that give me a ray of hope some days. You just have NO IDEA how much even the smallest of your efforts have made a difference nor how many times I have thanked the God I have not spoken to for two years before this for blessing me with such good people.

Shirrell · 06-13-2005, 08:10 PM

Nani, Sheri........whatever gets you thru this. A candle is lit as always.

brenniebear · 06-14-2005, 01:35 PM

I am still silently following this thread and just wanted to send you some more

and

gentylwind · 06-14-2005, 03:12 PM

Tuesday update

Today is a day of good news and bad news. I know I am getting tired again because I am starting to get emotional. I have spent the last two nights at the hospital and have to spend tonight again. Average sleep on a hospital night is a very interrupted four hours.

Last night was a night of explosive, very smelly diarrhea and simultaneous vomiting, high fevers, shakes that made his teeth clench and chatter, sweats, watching Star Wars together in the middle of the night and a touching, tender conversation between us in which Joseph opened up about a fear of telling his special friend (girlfriend? ) Bree about his illness. He has apparently been delaying telling her because he does not know how to do it and is afraid she will be sad and worried. I reminisced with him about the last time we spent a significant amount of time together in the hospital (when he was born) and we told soft stories of memories of his infancy, toddlerhood and growing years when I was his sole caretaker, the years his father was in the military and frequently gone from home. Our talk last night was precious to me. I am glad he has not forgotten when I was able to live with him every day and care for him.

Good news: So far all of his bacterial cultures have come back negative...that would be blood, spinal fluid and stool cultures. Blood cultures will continue to be done every day that Joseph remains febrile (feverish). No more spinal taps for at least two weeks. His spinal fluid is free of cancer now. Stool cultures, which Joseph found very humiliating, will be done as needed.

Bad news: Joseph is running an average temperature of 103.7 with his most recent climbing into the 104.8 range and becoming resistant to all attempts to lower it. No bacterial causes have been found through cultures and chest X-ray. This means likely he is developing a systemic fungal infection. This is very, very serious. It is the cause of death in 15% of leukemia patients. His fungal cultures have turned up negative so far, but from what his oncologists tell us, once they turn up positive its pretty much too late to treat. It takes a while. He will be starting anti-fungal medications by IV immediately. Side effects of this new, dangerous drug is kidney and liver damage, fever and severe shakes.

Joseph is at a very dangerous and critical point right now. He is "concerningly ill" according to his physicians. They are monitoring him closely. I know how concerned they are by how many of his team have actually come into his room to personally check on him today and talk to his father and I rather than just relaying things to us through the nurse.

Prayers please.

06-13-2005, 11:31 AM	#310
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	Monday morning update Rough night last night. Joseph is having pretty bad pain in his belly from the mucositis and they are starting him on a narcotic drip this morning to help him out. The nurse last night refused to put him on one and the doctor was not happy about that this morning. I was not either. He had a lumbar puncture this morning to check for cancer cells in the spinal fluid and to administer his last dose of chemo for this round. He is starting to show the effects of the chemo now. His hair is just barely starting to thin. He should lose it all by the end of the week we are told. He has been having nightmares, a result of the chemo also, and a bit of mildly aggressive psychosis that just generally is making him grumpy, uncooperative and the like. He reminds me a of a two year old right now. Everything makes him dissolve into tears or he gets very surly and demanding about unreasonable things. I can't really blame him at all, though it is hard not to get sharp with him to mind his manners. I have to remind myself how ill he is and that this is not really him...and even if it was not the medications making him be this way, I personally would probably be that way just from being stuck in hospital isolation for a week and a half with no end in sight. I didn't sleep much last night, came straight to work from the hospital and will have to go straight back when work is done. I stink, I have greasy hair, no make up and feel ugly. I need a shower. My clothes need washing. I am wearing my morning coffee on the front of my white Tshirt. But Joe is coming in two weeks and that has me smiling and content. I feel much stronger from the time off over the weekend. __________________ ~~ ~~ ~~ ~~ ~*~ http://inversion16.blogspot.com/

06-13-2005, 07:59 PM	#327
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	I love you too. Truly. I just can't say enough how much all the support, love, prayers have mattered to me. You have no idea how many hard, hard spots Y'all have gotten me through to date. Knowing people think well of me gives me a standard to live up to and that is not a bad thing at all. Knowing I am supported and loved also gives me so much strength. I have to edit this to add.....y'all...the cards and the care packages...some days those are the ONLY things that gets a smile or any energy out of Joseph. He adores opening them up and reading them, then he tells me where on the wall he wants each and every one. And in turn, that makes it the only things that give me a ray of hope some days. You just have NO IDEA how much even the smallest of your efforts have made a difference nor how many times I have thanked the God I have not spoken to for two years before this for blessing me with such good people. Last edited by gentylwind : 06-13-2005 at 08:02 PM.

06-12-2005, 06:47 PM	#301
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	Oh I am eating. Thanks to Emily and lots of going out. I chowed this weekend. I am going to get back on the SNARK challenge starting tomorrow, back to exercising. Between Emily and Joe I have been well lectured that this situation is not going away any time soon and i have got to learn to wrap my normal life around it.

06-12-2005, 06:53 PM	#302
EmilyBlanche Blabbermouth!!! Join Date: Feb 2004 Location: Minneapolis, MN Posts: 6,469 Gallery: EmilyBlanche Start Date: February 2004	I sound so pleasant. Oh, and that thing.. that we were discussing.. PM.

06-12-2005, 06:59 PM	#303
AliMay Highly Caffeinated Join Date: Mar 2003 Location: searching for my mind Posts: 23,078 Gallery: AliMay Stats: :( WOE: BFL	(((((((sheri)))))))))

06-12-2005, 07:00 PM	#304
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	(((((( ali-cuteness ))))))))

06-12-2005, 07:03 PM	#305
Shirrell Very Gabby LCF Member!!! Join Date: Jun 2003 Location: NC Posts: 4,022 Gallery: Shirrell Stats: crap/ok/sigh WOE: Atkins Start Date: July 2000	Prayers for Joseph for remission.

06-12-2005, 08:35 PM	#306
surfergirl Hanging 10 Till I hit 110! Join Date: May 2003 Location: Somewhere where its warm and the surf is good Posts: 5,342 Gallery: surfergirl Stats: 293/181/135 WOE: what works for me Start Date: when i did	parying for Joseph's remission!!! So glad you and ali and emily had fun!!! thats wonderful!

06-12-2005, 08:53 PM	#307
Angebee Blabbermouth!!! Join Date: Jan 2004 Location: Virginia Posts: 5,258 Gallery: Angebee Stats: Size 18/12&10/6 5'3" WOE: Body for Life Start Date: LC 1/5/04...BFL 6/12/05	Sheri. We can't wait to have you back as a regular Snarker again. You just gotta get Red and everyone else back in to it. Those punks might be bailing on us. DD finished her card for Joseph. I gotta tell ya - it's pretty blunt! She say's "don't ever get sick again" or something like that. Oh and she made him a bookmark that says "I think you should start reading". I guess that's how 7 yr olds think! Dh and I and the girls pray for Joseph and you all every night.

06-13-2005, 07:34 AM	#308
parrot Senior LCF Member Join Date: Jun 2004 Posts: 383 Gallery: parrot	Let me know when you're ready to chow at Luna de Noche. Yes, this is going to be a long road. I was telling you about my DH's cousin who has a child w/ cancer at Children's.... It will be a year next month that they've been fighting it (and he has beat the odds and is in remission!). They say that your life isn't the same, but you do figure out a new rhythm and get through it with a new definition of "normal". Right now everything is shocking and scary. ((huge hugs)) What else do you and Joeseph need? I can make another hospital run this week.

06-13-2005, 11:18 AM	#309
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	You are such a doll parrot....I can't think of anything I need more than adequate sleep right now. I will let you know as soon as the margarita fix becomes a "gotta happen" kind of thing.

06-13-2005, 11:59 AM	#311
lovemykids Very Gabby LCF Member!!! Join Date: Jan 2003 Location: ohio Posts: 3,836 Gallery: lovemykids Stats: 182/137/135 (or a comfortable size 4/6) WOE: eating whole foods carefully	hospital have a shower you can use? I'll do your laundry

06-13-2005, 12:31 PM	#312
theprettyredhead Wendy's Puppet Join Date: Apr 2004 Location: Holding Ali's mind captive Posts: 24,779 Gallery: theprettyredhead WOE: Reinducted 6-17	hides in Joe's suitcase so I can give ya a hug

06-13-2005, 12:37 PM	#313
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	You honestly don't want to hug me right now...I promise.....

06-13-2005, 01:11 PM	#314
mamagiff Bike Tart Join Date: Apr 2003 Location: right down the road from Bong Recreation Area! Posts: 31,455 Gallery: mamagiff WOE: Switched to Atkins Start Date: 3/24/08	I'm so sorry your son is having such a rough time right now. Hope you get some good news soon. Prayers and continuing good thoughts for you and all of your boys.

06-13-2005, 03:56 PM	#316
parrot Senior LCF Member Join Date: Jun 2004 Posts: 383 Gallery: parrot	You can come shower at my house -- seriously, I'm just on the other side of LBJ... You have my number if you're interested.

06-13-2005, 06:25 PM	#317
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	Thanks parrot For now I am managing okay here. I just feel a bit shabby, but Joseph doesn't seem to care and that is all that matters. All the nurses are girls anyway, so nobody to flirt with Stanky.... what a great word!

06-13-2005, 06:37 PM	#318
EmilyBlanche Blabbermouth!!! Join Date: Feb 2004 Location: Minneapolis, MN Posts: 6,469 Gallery: EmilyBlanche Start Date: February 2004	how was today?

06-13-2005, 06:40 PM	#319
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	I worked most of the day, but he has been in terrible pain and continues to be grumpy. His Granny is here now too and she always seems to bring out the best in him. He is behaving better right now than he has all day long....even let us get him up long enough to change his bedding. All because of Granny (Stewart's Mom). I Granny.

06-13-2005, 06:45 PM	#320
Majerus Way too much time on my hands! Join Date: Oct 2003 Location: La La Land... Posts: 12,767 Gallery: Majerus Start Date: 1/03	((((Joseph))))

06-13-2005, 06:53 PM	#321
Lori Eachday Join Date: May 2003 Location: New York Posts: 14,518 Gallery: Lori Stats: 20lbs goal/16lbs down/ 4 to go WOE: High Stress Diet	Prayers for a comfortable night.

06-13-2005, 07:05 PM	#322
Angebee Blabbermouth!!! Join Date: Jan 2004 Location: Virginia Posts: 5,258 Gallery: Angebee Stats: Size 18/12&10/6 5'3" WOE: Body for Life Start Date: LC 1/5/04...BFL 6/12/05	((((Joseph)))) and (((((Sheri)))) We are thinking about you tonight. I hope you both get some rest. How are the other boys holding up?

06-13-2005, 07:32 PM	#323
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	The other boys are knee deep in summer day camps and have been doing great. I have not gotten to see them as much as I would like and I miss them.

06-13-2005, 07:44 PM	#324
aki Blabbermouth!!! Join Date: Feb 2004 Location: State of Denial-But I'm moving Posts: 7,377 Gallery: aki Stats: 172.5/138/135 WOE: Counting calories Start Date: March 4, 2005	(((((Sheri and Joseph))))

06-13-2005, 07:46 PM	#325
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	aki! I just want you to know.... the "fart blower" that came with the whoopie cushion ws responsible for correcting Joseph collapsed lungs last week.

06-13-2005, 08:10 PM	#328
Shirrell Very Gabby LCF Member!!! Join Date: Jun 2003 Location: NC Posts: 4,022 Gallery: Shirrell Stats: crap/ok/sigh WOE: Atkins Start Date: July 2000	Nani, Sheri........whatever gets you thru this. A candle is lit as always.

06-14-2005, 01:35 PM	#329
brenniebear Big Yapper!!!! Join Date: Feb 2004 Location: New England Posts: 8,167 Gallery: brenniebear Stats: 140.5/136.5/120 WOE: WW Start Date: 2/2004	I am still silently following this thread and just wanted to send you some more and

06-14-2005, 03:12 PM	#330
gentylwind Blabbermouth!!! Join Date: Jan 2004 Location: south Posts: 7,238 Gallery: gentylwind Stats: 274/228.5/135 WOE: Atkins Start Date: Jan 2004	Tuesday update Today is a day of good news and bad news. I know I am getting tired again because I am starting to get emotional. I have spent the last two nights at the hospital and have to spend tonight again. Average sleep on a hospital night is a very interrupted four hours. Last night was a night of explosive, very smelly diarrhea and simultaneous vomiting, high fevers, shakes that made his teeth clench and chatter, sweats, watching Star Wars together in the middle of the night and a touching, tender conversation between us in which Joseph opened up about a fear of telling his special friend (girlfriend? ) Bree about his illness. He has apparently been delaying telling her because he does not know how to do it and is afraid she will be sad and worried. I reminisced with him about the last time we spent a significant amount of time together in the hospital (when he was born) and we told soft stories of memories of his infancy, toddlerhood and growing years when I was his sole caretaker, the years his father was in the military and frequently gone from home. Our talk last night was precious to me. I am glad he has not forgotten when I was able to live with him every day and care for him. Good news: So far all of his bacterial cultures have come back negative...that would be blood, spinal fluid and stool cultures. Blood cultures will continue to be done every day that Joseph remains febrile (feverish). No more spinal taps for at least two weeks. His spinal fluid is free of cancer now. Stool cultures, which Joseph found very humiliating, will be done as needed. Bad news: Joseph is running an average temperature of 103.7 with his most recent climbing into the 104.8 range and becoming resistant to all attempts to lower it. No bacterial causes have been found through cultures and chest X-ray. This means likely he is developing a systemic fungal infection. This is very, very serious. It is the cause of death in 15% of leukemia patients. His fungal cultures have turned up negative so far, but from what his oncologists tell us, once they turn up positive its pretty much too late to treat. It takes a while. He will be starting anti-fungal medications by IV immediately. Side effects of this new, dangerous drug is kidney and liver damage, fever and severe shakes. Joseph is at a very dangerous and critical point right now. He is "concerningly ill" according to his physicians. They are monitoring him closely. I know how concerned they are by how many of his team have actually come into his room to personally check on him today and talk to his father and I rather than just relaying things to us through the nurse. Prayers please.