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#5362 From: "jmdjbw" <wechslerbrooks@...>
Date: Tue Jun 9, 2009 2:31 am
Subject: Cleveland area hematologist? 		jmdjbw
Offline Offline
Send Email Send Email
  
Hi, all,

My son, who has Evans Syndrome, will be going off to college this fall in the

Cleveland area. I presume the medical center of choice is the Cleveland Clinic,

and wonder if anyone has a hematologist to recommend (or recommend against). He

is also making the transition from pediatric to adult medicine, we are kind of

sorry about that. We hope to find him a doctor who is also accessible and good

with young adults! Scary to have him leave home...

Thanks.

DW


Reply | Forward
#5363 From: "Erin Marcoux Healey" <eheals27@...>
Date: Mon Jun 15, 2009 2:20 pm
Subject: Patrick-7 months post splenectomy 		eheals27
Offline Offline
Send Email Send Email
  
To all:



We are now 7 month after surgery and Patrick continues to do well...



As of Friday, HGB is 13.9, WBC 10.2 and PLT 419,000.



Coombs test is negative since March...



So far, so good, we continue to keep our fingers crossed...



Hope all is well with everyone on board



Erin





--- In EvansSyndrome@yahoogroups.com, "jmdjbw" <wechslerbrooks@...> wrote:

>

> Hi, all,

> My son, who has Evans Syndrome, will be going off to college this fall in the

Cleveland area. I presume the medical center of choice is the Cleveland Clinic,

and wonder if anyone has a hematologist to recommend (or recommend against). He

is also making the transition from pediatric to adult medicine, we are kind of

sorry about that. We hope to find him a doctor who is also accessible and good

with young adults! Scary to have him leave home...

> Thanks.

> DW

>


Reply | Forward
#5364 From: cindy sherwood <cindy_sherwood@...>
Date: Tue Jun 16, 2009 2:14 am
Subject: Re: Patrick-7 months post splenectomy 		cindy_sherwood
Offline Offline
Send Email Send Email
 
Hi Everyone,
 
I saw this great positive message and I wanted to give all of you an update on my 14 year old Gabby.
 
We went through the Rituximab in January and Feburary and have been holding our breath. It is because of this forum that I even found out about this and suggested this to our Oncologist/Hemotologist.
 
Gabby is Coombs positive and has no platelets. Since we did the Rituximab she has been holding steady at 285k platelets since March and all of her other counts including WBC are perfect.
 
I am very optimistic, we have been through 2 years of complete dissaray with 6 children.
 
Thank you so much for this forum and everything I have learned here. It is a wealth of knowledge and great support. I cannot thank all of you enough for all of your support and help. We continue to be thankful every day for this forum.
 
Thanks again, Gabby continues to thrive during this good time.
 
Thanks you again for all of your support,
 
Cindy Sherwood

--- On Mon, 6/15/09, Erin Marcoux Healey <eheals27@...> wrote:

From: Erin Marcoux Healey <eheals27@...>
Subject: [EvansSyndrome] Patrick-7 months post splenectomy
To: EvansSyndrome@yahoogroups.com
Date: Monday, June 15, 2009, 8:20 AM

To all:

We are now 7 month after surgery and Patrick continues to do well...

As of Friday, HGB is 13.9, WBC 10.2 and PLT 419,000.

Coombs test is negative since March...

So far, so good, we continue to keep our fingers crossed...

Hope all is well with everyone on board

Erin

--- In EvansSyndrome@ yahoogroups. com, "jmdjbw" <wechslerbrooks@ ...> wrote:
>
> Hi, all,
> My son, who has Evans Syndrome, will be going off to college this fall in the Cleveland area. I presume the medical center of choice is the Cleveland Clinic, and wonder if anyone has a hematologist to recommend (or recommend against). He is also making the transition from pediatric to adult medicine, we are kind of sorry about that. We hope to find him a doctor who is also accessible and good with young adults! Scary to have him leave home...
> Thanks.
> DW
>



Reply | Forward
#5366 From: Famfar@...
Date: Tue Jun 16, 2009 2:59 am
Subject: Re: Patrick-7 months post splenectomy 		debbie.farias
Offline Offline
Send Email Send Email
 
My daughter hannah went through all of the same...way to  much to mention. At a platelet count of 4000 we decided on rituximab. After 3 difficult treatments, we are coombs negative and at 400000 platelet count. I am still  holding my breath. Thank god for medicine and doctors that are dedicated.

Debbie Farias 


-----Original Message-----
From: cindy sherwood <cindy_sherwood@...>
To: EvansSyndrome@yahoogroups.com
Sent: Mon, Jun 15, 2009 10:14 pm
Subject: Re: [EvansSyndrome] Patrick-7 months post splenectomy



Hi Everyone,
 
I saw this great positive message and I wanted to give all of you an update on my 14 year old Gabby.
 
We went through the Rituximab in January and Feburary and have been holding our breath. It is because of this forum that I even found out about this and suggested this to our Oncologist/Hemotologist.
 
Gabby is Coombs positive and has no platelets. Since we=2 0did the Rituximab she has been holding steady at 285k platelets since March and all of her other counts including WBC are perfect.
 
I am very optimistic, we have been through 2 years of complete dissaray with 6 children.
 
Thank you so much for this forum and everything I have learned here. It is a wealth of knowledge and great support. I cannot thank all of you enough for all of your support and help. We continue to be thankful every day for this forum.
 
Thanks again, Gabby continues to thrive during this good time.
 
Thanks you again for all of your support,
 
Cindy Sherwood

--- On Mon, 6/15/09, Erin Marcoux Healey <eheals27@yahoo.com> wrote:

From: Erin Marcoux Healey <eheals27@yahoo.com>
Subject: [EvansSyndrome] Patrick-7 months post splenectomy
To: EvansSyndrome@yahoogroups.com
Date: Monday, June 15, 2009, 8:20 AM

To all:

We are now 7 month after surgery and Patrick continues to do well...

As of Friday, HGB is 13.9, WBC 10.2 and PLT 419,000.

Coombs test is negative since March...

So far, so good, we continue to keep our fingers crossed...

Hope all is well with everyone on board

Erin

--- In EvansSyndrome@ yahoogroups. com, "jmdjbw" <wechslerbrooks@ ...> wrote:
>
> Hi, all,
> My son, who has Evans Syndrome, will be going off to college this fall in the Cleveland area. I presume the medical center of choice is the Cleveland Clinic, and wonder if anyone has a hematologist to recommend (or recommend against). He is also making the transition from pediatric to adult medicine, we are kind of sorry about that. We hope to find him a doctor who is also accessible and good with young adults! Scary to have him leave home...
> Thanks.
> DW
>



Reply | Forward
#5365 From: Erin Healey <eheals27@...>
Date: Tue Jun 16, 2009 2:59 am
Subject: Re: Patrick-7 months post splenectomy 		eheals27
Offline Offline
Send Email Send Email
 
Glad to hear Gabby is doing well...
 
PLT of 285 is great...
 
Patrick is 16, tough for a teenager to have to deal with these things...
 
My son appears to have hemolytic anemia and not the Evans as Drs originally thought he did... His platelets seemed to fluctuate depending on size of spleen...
 
Nice to hear good news...hope to hear more...
 
Erin

--- On Mon, 6/15/09, cindy sherwood <cindy_sherwood@...> wrote:

From: cindy sherwood <cindy_sherwood@...>
Subject: Re: [EvansSyndrome] Patrick-7 months post splenectomy
To: EvansSyndrome@yahoogroups.com
Date: Monday, June 15, 2009, 10:14 PM

Hi Everyone,
 
I saw this great positive message and I wanted to give all of you an update on my 14 year old Gabby.
 
We went through the Rituximab in January and Feburary and have been holding our breath. It is because of this forum that I even found out about this and suggested this to our Oncologist/Hemotolo gist.
 
Gabby is Coombs positive and has no platelets. Since we did the Rituximab she has been holding steady at 285k platelets since March and all of her other counts including WBC are perfect.
 
I am very optimistic, we have been through 2 years of complete dissaray with 6 children.
 
Thank you so much for this forum and everything I have learned here. It is a wealth of knowledge and great support. I cannot thank all of you enough for all of your support and help. We continue to be thankful every day for this forum.
 
Thanks again, Gabby continues to thrive during this good time.
 
Thanks you again for all of your support,
 
Cindy Sherwood

--- On Mon, 6/15/09, Erin Marcoux Healey <eheals27@yahoo. com> wrote:

From: Erin Marcoux Healey <eheals27@yahoo. com>
Subject: [EvansSyndrome] Patrick-7 months post splenectomy
To: EvansSyndrome@ yahoogroups. com
Date: Monday, June 15, 2009, 8:20 AM

To all:

We are now 7 month after surgery and Patrick continues to do well...

As of Friday, HGB is 13.9, WBC 10.2 and PLT 419,000.

Coombs test is negative since March...

So far, so good, we continue to keep our fingers crossed...

Hope all is well with everyone on board

Erin

--- In EvansSyndrome@ yahoogroups. com, "jmdjbw" <wechslerbrooks@ ...> wrote:
>
> Hi, all,
> My son, who has Evans Syndrome, will be going off to college this fall in the Cleveland area. I presume the medical center of choice is the Cleveland Clinic, and wonder if anyone has a hematologist to recommend (or recommend against). He is also making the transition from pediatric to adult medicine, we are kind of sorry about that. We hope to find him a doctor who is also accessible and good with young adults! Scary to have him leave home...
> Thanks.
> DW
>




Reply | Forward
#5367 From: cindy sherwood <cindy_sherwood@...>
Date: Tue Jun 16, 2009 3:09 am
Subject: Re: Patrick-7 months post splenectomy 		cindy_sherwood
Offline Offline
Send Email Send Email
 
All,
 
I will always be holding my breath anf thanking you all with the breath of my body for all of your help. You have no idea how thankful I am for this forum....
 
Thanks again!
Cindy

--- On Mon, 6/15/09, Famfar@... <Famfar@...> wrote:

From: Famfar@... <Famfar@...>
Subject: Re: [EvansSyndrome] Patrick-7 months post splenectomy
To: EvansSyndrome@yahoogroups.com
Date: Monday, June 15, 2009, 8:59 PM

My daughter hannah went through all of the same...way to  much to mention. At a platelet count of 4000 we decided on rituximab. After 3 difficult treatments, we are coombs negative and at 400000 platelet count. I am still  holding my breath. Thank god for medicine and doctors that are dedicated.

Debbie Farias 


-----Original Message-----
From: cindy sherwood <cindy_sherwood@ yahoo.com>
To: EvansSyndrome@ yahoogroups. com
Sent: Mon, Jun 15, 2009 10:14 pm
Subject: Re: [EvansSyndrome] Patrick-7 months post splenectomy



Hi Everyone,
 
I saw this great positive message and I wanted to give all of you an update on my 14 year old Gabby.
 
We went through the Rituximab in January and Feburary and have been holding our breath. It is because of this forum that I even found out about this and suggested this to our Oncologist/Hemotolo gist.
 
Gabby is Coombs positive and has no platelets. Since we=2 0did the Rituximab she has been holding steady at 285k platelets since March and all of her other counts including WBC are perfect.
 
I am very optimistic, we have been through 2 years of complete dissaray with 6 children.
 
Thank you so much for this forum and everything I have learned here. It is a wealth of knowledge and great support. I cannot thank all of you enough for all of your support and help. We continue to be thankful every day for this forum.
 
Thanks again, Gabby continues to thrive during this good time.
 
Thanks you again for all of your support,
 
Cindy Sherwood

--- On Mon, 6/15/09, Erin Marcoux Healey <eheals27@yahoo. com> wrote:

From: Erin Marcoux Healey <eheals27@yahoo. com>
Subject: [EvansSyndrome] Patrick-7 months post splenectomy
To: EvansSyndrome@ yahoogroups. com
Date: Monday, June 15, 2009, 8:20 AM

To all:

We are now 7 month after surgery and Patrick continues to do well...

As of Friday, HGB is 13.9, WBC 10.2 and PLT 419,000.

Coombs test is negative since March...

So far, so good, we continue to keep our fingers crossed...

Hope all is well with everyone on board

Erin

--- In EvansSyndrome@ yahoogroups. com, "jmdjbw" <wechslerbrooks@ ...> wrote:
>
> Hi, all,
> My son, who has Evans Syndrome, will be going off to college this fall in the Cleveland area. I presume the medical center of choice is the Cleveland Clinic, and wonder if anyone has a hematologist to recommend (or recommend against). He is also making the transition from pediatric to adult medicine, we are kind of sorry about that. We hope to find him a doctor who is also accessible and good with young adults! Scary to have him leave home...
> Thanks.
> DW
>




Reply | Forward
#5368 From: Famfar@...
Date: Tue Jun 16, 2009 3:43 am
Subject: Re: Patrick-7 months post splenectomy 		debbie.farias
Offline Offline
Send Email Send Email
 
I wish you all were here,,,noone can understand what this disease is. It is lonely and scary. I am scared for the future.

Debbie


-----Original Message-----
From: cindy sherwood <cindy_sherwood@...>
To: EvansSyndrome@yahoogroups.com
Sent: Mon, Jun 15, 2009 11:09 pm
Subject: Re: [EvansSyndrome] Patrick-7 months post splenectomy



All,
 
I will always be holding my breath anf thanking you all with the breath of my body for all of your help. You have no idea how thankful I am for this forum....
 
Thanks again!
Cindy

--- On Mon, 6/15/09, Famfar@... <Famfar@...> wrote:

From: Famfar@... <Famfar@...>
Subject: Re: [EvansSyndrome] Patrick-7 months post splenectomy
To: EvansSyndrome@yahoogroups.com
Date: Monday, June 15, 2009, 8:59 PM

My daughter hannah went through all of the same...way to  much to mention. At a platelet count of 4000 we decided on rituximab. After 3 difficult treatments, we are coombs negative and at 400000 platelet count. I am still  holding my breath. Thank god for medicine and doctors that are dedicated.

Debbie Farias 


-----Original Message-----
From: cindy sherwood <cindy_sherwood@ yahoo.com>
To: EvansSyndrome@ yahoogroups. com
Sent: Mon, Jun 15, 2009 10:14 pm
Subject: Re: [EvansSyndrome] Patrick-7 months post splenectomy



Hi Everyone,
 
I saw this great positive message and I wanted to give all of you an update on my 14 year old Gabby.
 
We went through the Rituximab in January and Feburary and have been holding our breath. It is because of this forum that I even found out about this and suggested this to our Oncologist/Hemotolo gist.
 
Gabby is Coombs positive and has no platelets. Since we=2 0did the Rituximab she has been holding steady at 285k platelets since March and all of her other counts including WBC are perfect.
 
I am very optimistic, we have been through 2 years of complete dissaray with 6 children.
 
Thank you so much for this forum and everything I have learned here. It is a wealth of knowledge and great support. I cannot thank all of you enough for all of your support and help. We continue to be thankful every day for this forum.
 
Thanks again, Gabby continues to thrive during this good time.
 
Thanks you again for all of your support,
 
Cindy Sherwood

--- On Mon, 6/15/09, Erin Marcoux Healey <eheals27@yahoo. com> wrote:

From: Erin Marcoux Healey <eheals27@yahoo. com>
Subject: [EvansSyndrome] Patrick-7 months post splenectomy
To: EvansSyndrome@ yahoogroups. com
Date: Monday, June 15, 2009, 8:20 AM

To all:

We are now 7 month after surgery and Patrick continues to do well...

As of Friday, HGB is 13.9, WBC 10.2 and PLT 419,000.

Coombs test is negative since March...

So far, so good, we continue to keep our fingers crossed...

Hope all is well with everyone on board

Erin

--- In EvansSyndrome@ yahoogroups. com, "jmdjbw" <wechslerbrooks@ ...> wrote:
>
> Hi, all,
> My son, who has Evans Syndrome, will be going off to college this fall in the Cleveland area. I presume the medical center of choice is the Cleveland Clinic, and wonder if anyone has a hematologist to recommend (or recommend against). He is also making the transition from pediatric to adult medicine, we are kind of sorry about that. We hope to find him a doctor who is also accessible and good with young adults! Scary to have him leave home...
> Thanks.
> DW
>




Reply | Forward
#5369 From: bettanmic@...
Date: Tue Jun 16, 2009 8:14 am
Subject: Re: Patrick-7 months post splenectomy 		bettanmic
Offline Offline
Send Email Send Email
 
I am glad to hear that Gabby is going well, my son Paul now 22, has been thru many things with his Evans as well as other health and learning issues. BUT he has been feeling well with low but for him adequate
platelets and hasn't had any treatments or drugs of any kind for the last year and a half. We are thankful for this healthy period and thrilled to have others experience it as well. We pray that others may have it as well and know how fragile the whole picture is.  Thank you all .
 
Betty mom to Paul with Evans+

Reply | Forward
#5370 From: cindy sherwood <cindy_sherwood@...>
Date: Mon Jun 22, 2009 1:14 am
Subject: Re: Patrick-7 months post splenectomy 		cindy_sherwood
Offline Offline
Send Email Send Email
 
Gabby was at a platelet count of 1k right before we started the rituximab. They wanted me to give her steriods again and I declined. I am so happy. The steriods were horrible for her and her platelets are at 285k. We are just thankful we do not have to go back to the doctor for 8 weeks. Her stretch marks on her arms are starting to subside, so they are not as noticeable, but she still has very severe ones on her abs and her legs.
 
Thanks to all for all of your support.
 
Cindy

--- On Mon, 6/15/09, Famfar@... <Famfar@...> wrote:

From: Famfar@... <Famfar@...>
Subject: Re: [EvansSyndrome] Patrick-7 months post splenectomy
To: EvansSyndrome@yahoogroups.com
Date: Monday, June 15, 2009, 8:59 PM

My daughter hannah went through all of the same...way to  much to mention. At a platelet count of 4000 we decided on rituximab. After 3 difficult treatments, we are coombs negative and at 400000 platelet count. I am still  holding my breath. Thank god for medicine and doctors that are dedicated.

Debbie Farias 


-----Original Message-----
From: cindy sherwood <cindy_sherwood@ yahoo.com>
To: EvansSyndrome@ yahoogroups. com
Sent: Mon, Jun 15, 2009 10:14 pm
Subject: Re: [EvansSyndrome] Patrick-7 months post splenectomy



Hi Everyone,
 
I saw this great positive message and I wanted to give all of you an update on my 14 year old Gabby.
 
We went through the Rituximab in January and Feburary and have been holding our breath. It is because of this forum that I even found out about this and suggested this to our Oncologist/Hemotolo gist.
 
Gabby is Coombs positive and has no platelets. Since we=2 0did the Rituximab she has been holding steady at 285k platelets since March and all of her other counts including WBC are perfect.
 
I am very optimistic, we have been through 2 years of complete dissaray with 6 children.
 
Thank you so much for this forum and everything I have learned here. It is a wealth of knowledge and great support. I cannot thank all of you enough for all of your support and help. We continue to be thankful every day for this forum.
 
Thanks again, Gabby continues to thrive during this good time.
 
Thanks you again for all of your support,
 
Cindy Sherwood

--- On Mon, 6/15/09, Erin Marcoux Healey <eheals27@yahoo. com> wrote:

From: Erin Marcoux Healey <eheals27@yahoo. com>
Subject: [EvansSyndrome] Patrick-7 months post splenectomy
To: EvansSyndrome@ yahoogroups. com
Date: Monday, June 15, 2009, 8:20 AM

To all:

We are now 7 month after surgery and Patrick continues to do well...

As of Friday, HGB is 13.9, WBC 10.2 and PLT 419,000.

Coombs test is negative since March...

So far, so good, we continue to keep our fingers crossed...

Hope all is well with everyone on board

Erin

--- In EvansSyndrome@ yahoogroups. com, "jmdjbw" <wechslerbrooks@ ...> wrote:
>
> Hi, all,
> My son, who has Evans Syndrome, will be going off to college this fall in the Cleveland area. I presume the medical center of choice is the Cleveland Clinic, and wonder if anyone has a hematologist to recommend (or recommend against). He is also making the transition from pediatric to adult medicine, we are kind of sorry about that. We hope to find him a doctor who is also accessible and good with young adults! Scary to have him leave home...
> Thanks.
> DW
>




Reply | Forward
 
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