I will be speaking about Down syndrome and Leukemia

[Guest guest]

Hello all!

I haven't posted in a long time because I had a screwed up setting on my

profile. My name is Robbin Lyons. I know a few of you.

I run a support program for people with DS and leukemia and other cancers. I

started in Indiana and now I am in Wisconsin. I support people from all over

though. You can see more at www.wiusd.org and click on cancer support or

kelly's Upside Down Ball. I have been doing this since 2004 when my daughter

was just starting her battle with ALL. Today she is midway through her

5th year off treatment.

I am going to be talking at the Down syndrome Affiliates in Action conference in

Dallas in February (visit www.dsaia.org)about the importance of educating

members of DS groups about the risk of leukemia and how to spot signs of onset.

I will also be talking about how to best support these families.

If amy of you have anything that you'd duggest that I put in my speech, I am all

ears.

[Guest guest]

This is awesome. Great idea. This topic is never discussed at conferences.

I think you are hitting the most important points....prevelence, signs and support.

It was networking on the listservs how I first learned about leukemia and was able to spot the signs. In addition to the peticiae, my daughter also had chapped skin. So the doctor's office thought it was just a rash and said to put cortisone cream on. Because of what I learned, I insited they do a CBC where we learned her platlets were low....the rest is history!

Thanks for doing this.

From: Robbin <robbin@...>Subject: [ ] I will be speaking about Down syndrome and Leukemia Date: Saturday, January 15, 2011, 12:09 AM

Hello all!I haven't posted in a long time because I had a screwed up setting on my profile. My name is Robbin Lyons. I know a few of you. I run a support program for people with DS and leukemia and other cancers. I started in Indiana and now I am in Wisconsin. I support people from all over though. You can see more at www.wiusd.org and click on cancer support or kelly's Upside Down Ball. I have been doing this since 2004 when my daughter was just starting her battle with ALL. Today she is midway through her 5th year off treatment. I am going to be talking at the Down syndrome Affiliates in Action conference in Dallas in February (visit www.dsaia.org)about the importance of educating members of DS groups about the risk of leukemia and how to spot signs of onset. I will also be talking about how to best support these families. If amy of you have anything that you'd duggest that I put in my speech, I am all ears.

[Guest guest]

Hi,I look forward to looking up your site and seeing what all you do. We are fighting the fight right now in the hospital. One thing I think of is addressing the age. I did not worry about leukemia when we were trying to figure out what was wrong because she was older. I know it happens less often to older children but it does happen so it needs to be in parents minds.Carla Mayer, mom to , 14 yrs DS/Autism and Leukemia (dx 2-5-10) and , 10 yrs. On Fri, Jan 14, 2011 at 11:09 PM , Robbin wrote: Hello all! I haven't posted in a long time because I had a screwed up setting on my profile. My name is Robbin Lyons. I know a few of you. I run a support program for people with DS and leukemia and other cancers. I started in Indiana and now I am in Wisconsin. I support people from all over though. You can see more at www.wiusd.org and click on cancer support or kelly's Upside Down Ball. I have been doing this since 2004 when my daughter was just starting her battle with ALL. Today she is midway through her 5th year off treatment. I am going to be talking at the Down syndrome Affiliates in Action conference in Dallas in February (visit www.dsaia.org)about the importance of educating members of DS groups about the risk of leukemia and how to spot signs of onset. I will also be talking about how to best support these families. If amy of you have anything that you'd duggest that I put in my speech, I am all ears.

[Guest guest]

In a message dated 1/15/2011 8:50:56 P.M. Central Standard Time, ammayer@... writes:

http://www.caringbridge.org/visit/ashleymayer

Thank you for allowing us to share in your journey. We are your masses of angels and are here by your side through it all! Lean on us!

Dolezan

www.caringbridge.org/visit/lindadolezan

[Guest guest]

I often wonder what the relapse chances are. I worry every day. I am sure I am not alone on this one.

LInda

[Guest guest]

Carla,

I am so sorry to hear of your daughters recent dx. I know what a terribly scary time this must be for you and your family. Do you have a carepage? If so I would like to follow your daughter's journey if you don't mind sharing the link to carepages. Thoughts and prayers to you, your daughter and your entire family!

Robin

Hello all!

I haven't posted in a long time because I had a screwed up setting on my profile. My name is Robbin Lyons. I know a few of you.

I run a support program for people with DS and leukemia and other cancers. I started in Indiana and now I am in Wisconsin. I support people from all over though. You can see more at www.wiusd.org and click on cancer support or kelly's Upside Down Ball. I have been doing this since 2004 when my daughter was just starting her battle with ALL. Today she is midway through her 5th year off treatment.

I am going to be talking at the Down syndrome Affiliates in Action conference in Dallas in February (visit www.dsaia.org)about the importance of educating members of DS groups about the risk of leukemia and how to spot signs of onset. I will also be talking about how to best support these families.

If amy of you have anything that you'd duggest that I put in my speech, I am all ears.

[Guest guest]

Robing,Thank you for your concern. Here is the link to 's page, http://www.caringbridge.org/visit/ashleymayer Carla Mayer, mom to , 14 yrs DS/Autism and Leukemia (dx 2-5-10) and , 10 yrs. On Sat, Jan 15, 2011 at 6:26 PM , robin fiala wrote: Carla, I am so sorry to hear of your daughters recent dx. I know what a terribly scary time this must be for you and your family. Do you have a carepage? If so I would like to follow your daughter's journey if you don't mind sharing the link to carepages. Thoughts and prayers to you, your daughter and your entire family! Robin Hello all! I haven't posted in a long time because I had a screwed up setting on my profile. My name is Robbin Lyons. I know a few of you. I run a support program for people with DS and leukemia and other cancers. I started in Indiana and now I am in Wisconsin. I support people from all over though. You can see more at www.wiusd.org and click on cancer support or kelly's Upside Down Ball. I have been doing this since 2004 when my daughter was just starting her battle with ALL. Today she is midway through her 5th year off treatment. I am going to be talking at the Down syndrome Affiliates in Action conference in Dallas in February (visit www.dsaia.org)about the importance of educating members of DS groups about the risk of leukemia and how to spot signs of onset. I will also be talking about how to best support these families. If amy of you have anything that you'd duggest that I put in my speech, I am all ears.

[Guest guest]

I have put that in my presentation and you are so right. Most cases of leukemia

occur in the first decade of life. However, they do still occur at all ages and

actually increase in later years.

>

> Hello all!

>

> I haven't posted in a long time because I had a screwed up setting on my

> profile. My name is Robbin Lyons. I know a few of you.

>

> I run a support program for people with DS and leukemia and other

> cancers. I started in Indiana and now I am in Wisconsin. I support

> people from all over though. You can see more at www.wiusd.org and

> click on cancer support or kelly's Upside Down Ball. I have been doing

> this since 2004 when my daughter was just starting her battle with

> ALL. Today she is midway through her 5th year off treatment.

>

> I am going to be talking at the Down syndrome Affiliates in Action

> conference in Dallas in February (visit www.dsaia.org)about the

> importance of educating members of DS groups about the risk of leukemia

> and how to spot signs of onset. I will also be talking about how to

> best support these families.

>

> If amy of you have anything that you'd duggest that I put in my speech,

> I am all ears.

>

> <>

>

[Guest guest]

I am really happy with how the presentation is coming together. I have to keep

it at an hour and I want to leave time for questions. When I am done, I will

post it here. It is powerpoint, so it's more of an outline. But it'll give you

an idea of what I am doing. Then it will be available on the DSAIA repository

for groups around the nation to use.

>

> Hello all!

>

> I haven't posted in a long time because I had a screwed up setting on my

profile. My name is Robbin Lyons. I know a few of you.

>

> I run a support program for people with DS and leukemia and other cancers. I

started in Indiana and now I am in Wisconsin. I support people from all over

though. You can see more at www.wiusd.org and click on cancer support or

kelly's Upside Down Ball. I have been doing this since 2004 when my daughter

was just starting her battle with ALL. Today she is midway through her

5th year off treatment.

>

> I am going to be talking at the Down syndrome Affiliates in Action conference

in Dallas in February (visit www.dsaia.org)about the importance of educating

members of DS groups about the risk of leukemia and how to spot signs of onset.

I will also be talking about how to best support these families.

>

> If amy of you have anything that you'd duggest that I put in my speech, I am

all ears.

>