Re: DS & Leukemia

[Guest guest]

Hi , and welcome

Our group is less than a year old and we have just under 50 members. We provide support for one another and share information as we can.

My daughter, 5 yr w/ DS, was diagnosed with AML when she was 2. She is done with treatment and doing well. I know there are several memebers who have children with ALL, and will be better equiped to answer your questions about their tolerance to decadron & chemo.

As we come across different articles, we try to post. Here is an article on DS and Leukemia:

http://my.webmd.com/content/article/100/105532.htm

Again, welcome

sp

"L. Norman" <lsn82397@...> wrote:

Hello! Please allow me to introduce myself. I am a new member of your support group. I received information about your group from the National Down Syndrome Society. I really do need some "support" and am looking forward to getting to know some of you through this group. There is no support group for Down Syndrome children with leukemia out here on the West Coast. We are desperately seeking more information about leukemia treatment for DS kids and their reactions to chemotherapy. (We are NOT seeking medical advice!) We are just concerned parents!We are a family of three-myself ( & 'Mom'), my husband, Bill, and our 3 1/2 year old daughter, , who has Down Syndrome. We live in Long Beach, CA. Our precious was diagnosed with Acute Lymphoblastic Leukemia (A.L.L.) last July. She is being treated at

Children's Hospital in Long Beach, CA. , we discovered, has a low tolerance to chemotherapy and will probably need her doses adjusted signicantly downward. She also has not tolerated the steroid, Decadron, very well. If any of you feel comfortable sharing about your child's experience that has leukemia or went through treatment for Leukemia, we would really appreciate any information shared. Have any of your children had similar reactions to chemo or Decadron such as that of ? Do any of you know of any other Internet links that might provide more info about DS and Leukemia? I promise that any information shared is only for our own use and will NOT be disclosed to any outside party. We thank you for letting us be a part of your group and for any help or encouragement you can share. May the Lord bless you!Sincerely, Norman

[Guest guest]

,

Welcome! I am a California girl now living in North Carolina! We left CA because of the lack of resources for our son, Ethan.

Ethan is turning 4 in a month (May 25th) and he was diagnosed with ALL on February 13, 2004. You may read more about him at www.pdssn.com under the family stories. That is my local Down syndrome network's website.

Ethan had very bad reactions to his methotrexate. It was lowered from 50% to 27%. Almost every inpatient MTX treatment landed us in the hospital for another week due to mouth sores and lack of eating/drinking. His blast cells were only 20% at diagnosis which is not enough to be on protocol study (we had followed one, but he wasn't on study) so we had the option of switching his bi-weekly MTX to weekly. Now he gets 4 tablets of MTX every weekend without the leucovorin. It has been a much better fix for us. He tolerates it much better now. He didn't have a bad reaction so much with Decadron, it was just awful getting it down him. The smell is nasty let alone the taste! He is on his week of prednisone this week and we have two more days of it...this is always a LONG week! He fights us to take it!

One of our other problems is that Ethan took a step back in the feeding department. We had always had problems trying to get him to chew food, so we would give him pasta's or table food that was chopped up in the food processor. After treatment began, he stopped wanting to eat ANYTHING with texture. He would only eat mashed potatoes for the first month (now he won't touch them) and we had to go back to stage 2 baby food. He lived off of pediasure for a fair amount of time. We still keep some "on tap" just in case.

It's especially hard because he can't tell me what he wants or needs. He certainly knows how to tell me no, but he hardly even uses his sign, so it is extremely difficult trying to get him to communicate.

I don't know if this helps you or not, but I for one am so happy that you found us! Keep us updated and if you have a picture of , we would all love to see her!

God Bless,

Faulkner (mom to Ethan, almost 4)

[ ] DS & Leukemia

Hello! Please allow me to introduce myself. I am a new member of your support group. I received information about your group from the National Down Syndrome Society. I really do need some "support" and am looking forward to getting to know some of you through this group. There is no support group for Down Syndrome children with leukemia out here on the West Coast. We are desperately seeking more information about leukemia treatment for DS kids and their reactions to chemotherapy. (We are NOT seeking medical advice!) We are just concerned parents!We are a family of three-myself ( & 'Mom'), my husband, Bill, and our 3 1/2 year old daughter, , who has Down Syndrome. We live in Long Beach, CA. Our precious was diagnosed with Acute Lymphoblastic Leukemia (A.L.L.) last July. She is being treated at Children's Hospital in Long Beach, CA. , we discovered, has a low tolerance to chemotherapy and will probably need her doses adjusted signicantly downward. She also has not tolerated the steroid, Decadron, very well. If any of you feel comfortable sharing about your child's experience that has leukemia or went through treatment for Leukemia, we would really appreciate any information shared. Have any of your children had similar reactions to chemo or Decadron such as that of ? Do any of you know of any other Internet links that might provide more info about DS and Leukemia? I promise that any information shared is only for our own use and will NOT be disclosed to any outside party. We thank you for letting us be a part of your group and for any help or encouragement you can share. May the Lord bless you!Sincerely, Norman

[Guest guest]

,

Welcome! I'm glad you found us and jump started us. You and remind me much of my situation. My son is 5 and has DS. He was diagnosed with high-risk preB ALL on Oct. 29, 2003. He's in maintenance therapy now. He's had a lot of complications along the way and is extremely sensitive to methotrexate. He only got one regular dose, and a second reduced dose, of escalating methotrexate in that phase, and then they discontinued methotrexate altogether. He does get it now orally once a week, though we still haven't found a dose he can be stable on; and in spinal (LP) treatments twice a quarter. He has had constant problems with neutropenia throughout treatment due to his sensitivity to chemo. He's had a lot of complications, including the feeding issues mentions. He received a Gtube (feeding tube system) in interim maintenance and still requires nightly Pediasure through that. He's slowly eating more and is in feeding therapies, but we also still rely on stage 2 baby foods and Pediasure, and a few more advanced things. Leukemia also wiped out his delayed gross motor skills for a while; at one point he couldn't even sit up. He is now regaining strength and even gaining new skills, finally, and just started to walk a bit. He is communication delayed, but can get his main points across with simple signs and a few words. He is happy, full of hugs and laughs. I remember wondering if I'd ever see him smile again; now I see it every day. Things do get better.

The decadron early on did crash his counts a lot, but he didn't have any other reaction - other than roid rage, of course. Now in maintenance, he's on prednisone for 5 days every month, and he tolerates that much better.

The website www.ds-health.com has some info on ds and leukemia. The National Cancer Institute has good info about childhood cancers, with a section on ALL, that briefly mentions DS. Also, I am on a very supportive listserve for parents of kids with ALL, and three of us have kids with DS. You can find it and sign up at www.all-kids.org.

Hope this helps. If you want to see , check his website, www.caringbridge.org/in/kylefacts.

Beth

[ ] DS & Leukemia

Hello! Please allow me to introduce myself. I am a new member of your support group. I received information about your group from the National Down Syndrome Society. I really do need some "support" and am looking forward to getting to know some of you through this group. There is no support group for Down Syndrome children with leukemia out here on the West Coast. We are desperately seeking more information about leukemia treatment for DS kids and their reactions to chemotherapy. (We are NOT seeking medical advice!) We are just concerned parents!We are a family of three-myself ( & 'Mom'), my husband, Bill, and our 3 1/2 year old daughter, , who has Down Syndrome. We live in Long Beach, CA. Our precious was diagnosed with Acute Lymphoblastic Leukemia (A.L.L.) last July. She is being treated at Children's Hospital in Long Beach, CA. , we discovered, has a low tolerance to chemotherapy and will probably need her doses adjusted signicantly downward. She also has not tolerated the steroid, Decadron, very well. If any of you feel comfortable sharing about your child's experience that has leukemia or went through treatment for Leukemia, we would really appreciate any information shared. Have any of your children had similar reactions to chemo or Decadron such as that of ? Do any of you know of any other Internet links that might provide more info about DS and Leukemia? I promise that any information shared is only for our own use and will NOT be disclosed to any outside party. We thank you for letting us be a part of your group and for any help or encouragement you can share. May the Lord bless you!Sincerely, Norman

[Guest guest]

Hi

What sort of reaction does have? (6) turns into the

devil child when he is on the steroids. It's like walking on egg

shells around here some times!

Welcome to the group. I think you'll find lots of support here.

Cheers

Chris

Adelaide, Australia

[Guest guest]

> ,

>

> Welcome! I am a California girl now living in North Carolina! We

left CA because of the lack of resources for our son, Ethan.

>

> Ethan is turning 4 in a month (May 25th) and he was diagnosed with

ALL on February 13, 2004. You may read more about him at

www.pdssn.com under the family stories. That is my local Down

syndrome network's website.

>

> Ethan had very bad reactions to his methotrexate. It was lowered

from 50% to 27%. Almost every inpatient MTX treatment landed us in

the hospital for another week due to mouth sores and lack of

eating/drinking. His blast cells were only 20% at diagnosis which is

not enough to be on protocol study (we had followed one, but he

wasn't on study) so we had the option of switching his bi-weekly MTX

to weekly. Now he gets 4 tablets of MTX every weekend without the

leucovorin. It has been a much better fix for us. He tolerates it

much better now. He didn't have a bad reaction so much with

Decadron, it was just awful getting it down him. The smell is nasty

let alone the taste! He is on his week of prednisone this week and

we have two more days of it...this is always a LONG week! He fights

us to take it!

>

> One of our other problems is that Ethan took a step back in the

feeding department. We had always had problems trying to get him to

chew food, so we would give him pasta's or table food that was

chopped up in the food processor. After treatment began, he stopped

wanting to eat ANYTHING with texture. He would only eat mashed

potatoes for the first month (now he won't touch them) and we had to

go back to stage 2 baby food. He lived off of pediasure for a fair

amount of time. We still keep some " on tap " just in case.

>

> It's especially hard because he can't tell me what he wants or

needs. He certainly knows how to tell me no, but he hardly even uses

his sign, so it is extremely difficult trying to get him to

communicate.

>

> I don't know if this helps you or not, but I for one am so happy

that you found us! Keep us updated and if you have a picture of

, we would all love to see her!

>

> God Bless,

> Faulkner (mom to Ethan, almost 4)

> [ ] DS & Leukemia

>

>

> Hello, ! I was so pleased to receive your letter. Thank

you for sharing your experiences with Ethan. Am so sorry to hear

that he's been having problems with the chemo, and my heart goes out

to you. It is so Difficult! He will also be in my prayers!

Do you mind if I ask if he is on both decadron and prednisone, or was

he previously on decadron and then they switched him to prednisone?

The doctors here are not willing to use prednisone even though I

asked them about it. Did you notice any difference in Ethan's

reactions when he was on decadron versus prednisone? It is so tough

when the kids won't take medicines - I very much sympathise what you

are going through with that, and I hope he will get better with it!

With regard to , she is very, very active while on decadron.

Aslo, she has terrible insomnia. As I wrote one of the other parents

in the group-some mornings, and I are going to bed as my

husband is getting up to go to work! And then she will only sleep

for 4 or maybe 5 hours before she is up and going again. Back in

January she became encouragable for a few days and they prescribed

Lorazapam to calm her down. That helped with the emotion problem,

but it did not help the insomnia. Right now we are back on a somewhat

normal sleep pattern, but when she goes back on it again (once a

month for 5 days), it will start all over!

I learned from a recent hospital stay from one of our nurses, that DS

children can have very low tolerance to MTX. Unfortunately, it

sounds like poor Ethan is one of these children. Some of his

reactions sound similar to 's. I can't tell, though, if

has reacted to the MTX or another drug or just a combination of

several. She went through a 'delayed intensification phase' of chemo

back in January. About a week following the last treatment, all her

counts dropped into the 'basement' (her immunity count (ANC) reached

24) and she required several transfusions of both hemoglobin and

plateletts. (None of her counts recovered for about 5 weeks.) She

also got a severe throat pain which caused her to stop eating and

drinking and she then became dehydrated. This landed her in the

hospital for 2 1/2 weeks. Her appetite never did return, so the dr's

prescribed a nasal/gastric feeding tube to help her. Currently she

still has the feeding tube, and we feed her through it during her

sleeping hours. She still has very little appetite.

We are currently going through another severe drop in counts

following her first interim maintenance treatment about 3 weeks ago.

So, we are on hold again for further treatments. was on a

study in the fall when she received MTX through her portacath. We

recently took her off the study and now she also is receiving oral

MTX. She was taking 5 1/2 tablets once a week. All her medications

will now have to be reduced also because it appears she is not

tolerating it either. Hope you don't mind my asking - did your

doctors have Ethan on 6-MP (mercaptapurine) along with the oral MTX?

had to take it every day!

Thank you so much for reading such a long message! I really

appreciate you sharing with me and it is such a blessing to be part

of such a great group! I look forward to hearing from you in the

future! May God bless you and your family!

>

>

>

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

----------

>

[Guest guest]

Hello, Beth! Thank you for responding to my posted note! It was so

great to hear from another parent and it is such an honor to be part

of this group. The messages I have received have already been so

helpful! Thank you for sharing about your experiences with .

His reactions to chemo do in fact sound very similar to what

has experienced. It is so hard to watch a child go through these

traumas and procedures. I am so sorry he has been through all that,

but am very glad to hear that he is happy and smiling again!

We have discovered that is also sensitive to chemo. After her

delayed intensification phase of chemo, all her counts dropped

severely. She needed several transfusions of hemoglobin and

plateletts, her immunity count (ANC) dropped to 24, and she got a

severe throat pain which caused her to stop eating and drinking, and

she got severely dehydrated. This landed her in the hospital, and we

were there for 2 1/2 weeks. Her appetite never did return, so they

prescribed an N/Gtube for her. That was back in February following a

delayed intensification phase of chemo. Her counts did not recover

for 5 weeks (that is her ANC stayed below 500). She is currently

still on the feeding tube with very little appetite. is also

getting night time feedings through the tube with Pediasure. We

don't feed her during the day so that maybe she will eat on her own.

We are now going through severely low counts again after her first

interim maintenance chemo treatment following the time period I just

described. So we are on hold for further treatments again. I think

they will have to adjust the dosage levels of chemo to lower amounts

for as they did for your .

I hope you don't mind if I ask - did you request that be

switched to Prednisone from Decadron, or did his doctors prescribe

it? I have asked ours about switching but they are not willing.

They have told me that the national protocol will soon call for all

leukemia patients to be taken off of Prednisone and that Decadron

will be the steroid of choice...?! Did have any problems with

insomnia while on Decadron? has terrible insomnia when she

comes off of it. As I told a couple of other parents in the group,

there have been mornings when and I are going to bed as my

husband is getting up to go to work! Her sleep schedule is all over

the map! We have her on a more normal schedule now, but when she

goes back on Decadron, it will start over again!

Well, thank you for taking the time to read this long message. It

does help to share, and I thank you again for sharing with me. I

will keep in my prayers. I look forward to hearing from you

again in the future. May God bless you and your family!

>

>

>

>

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

--------

>

[Guest guest]

Hello, ! I need to apologize for the first TWO messages that I

sent to you! I hope that you recognized them as yours. I'm still new

at this type of communication, so please bear with me! I did not

know that I had to type the new message above the sender's in order

to reply with their name at the top! Your original reply from me is

message #434.

Again, thank you for your encouragement and support and including me

in your group! I have already found it to be so helpful! I really

look forward to hearing from you in the near future!

> Hi , and welcome

>

> Our group is less than a year old and we have just under 50

members. We provide support for one another and share information as

we can.

>

> My daughter, 5 yr w/ DS, was diagnosed with AML when she was

2. She is done with treatment and doing well. I know there are

several memebers who have children with ALL, and will be better

equiped to answer your questions about their tolerance to decadron &

chemo.

>

> As we come across different articles, we try to post. Here is an

article on DS and Leukemia:

> http://my.webmd.com/content/article/100/105532.htm

>

> Again, welcome

> sp

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

,

Please don't apologize! I don't think that I ever delete stuff, hmmm. It's all good...

I know that you asked if Ethan was switched to prednisone later from decadron and my answer is yes and no. He was on dec in the beginning during intensification. Once he went maintenance, the oncs switched to prednisone. They told me that it was basically the same thing.

Ethan just ended his week of prednisone and he is starting to come back to my happy boy! He was a devil child!!! I joke that if he is mean after a transfusion, that he received the devil's blood. My Pastor thought that was funny...

We have a great little group going on here, I hope to hear much more WONDERFUL things about . I send pictures of Ethan here, and I am getting ready to send a few maybe this weekend, so you can see what my Bubba's looks like...or you can sneak peek at our family website (in much need of an update!)... www.faulknerfam.com

Hugs,

(mom to Ethan, almost 4)

[ ] Re: DS & Leukemia

Hi, ! I need to apologize for the mistake I made in my first message to you. I'm still new at this type of communication! I did not know that I had to delete the part of the reply screen that repeats the message from the sender so that their name will appear first in the new note. The original message that I sent to you is message #435. I hope that you recognize it as yours from me to you! Again, thank you for your note to me. I really appreciate all the information that you shared. I look forward to hearing from you in the future. > > > > > > > ------------------------------------------------------------------------------>

[Guest guest]

- Thank you so much for your note! I really appreciate the

information you provided about Ethan and the steroids.

By the way, I did check out the website you mentioned in your last

note to me with his photo. Thanks for telling me about it. He is SO

adorable! The photo of the three of you at the end is great too! I

can't believe all that you went through right after his birth with

the infection that set in! What a devastating thing to go through

right after the blessed event of his birth. I certainly pray that

the Lord will heal him completely from this leukemia!

We just went to the doctor today and 's ANC is 128, up from 84

last week. Slow but sure... She did need two transfusions over the

weekend and she is doing better now. The doctor has ordered a test

to see if a specific enzyme is missing from her blood that would help

metabolize the chemo. It will be interesting to find out the

results. I guess that they determine how much to reduce the dosage

of chemo from there. She has been healthy throughout all this

though, and we praise the Lord for that!

Again, thank you so much for sharing with me! Blessings to you and

your family!

> ,

>

> Please don't apologize! I don't think that I ever delete stuff,

hmmm. It's all good...

>

> I know that you asked if Ethan was switched to prednisone later

from decadron and my answer is yes and no. He was on dec in the

beginning during intensification. Once he went maintenance, the oncs

switched to prednisone. They told me that it was basically the same

thing.

>

> Ethan just ended his week of prednisone and he is starting to come

back to my happy boy! He was a devil child!!! I joke that if he is

mean after a transfusion, that he received the devil's blood. My

Pastor thought that was funny...

>

> We have a great little group going on here, I hope to hear much

more WONDERFUL things about . I send pictures of Ethan here,

and I am getting ready to send a few maybe this weekend, so you can

see what my Bubba's looks like...or you can sneak peek at our family

website (in much need of an update!)... www.faulknerfam.com

>

> Hugs,

> (mom to Ethan, almost 4)

> [ ] Re: DS & Leukemia

>

>

> Hi, ! I need to apologize for the mistake I made in my

first

> message to you. I'm still new at this type of communication! I

did

> not know that I had to delete the part of the reply screen that

> repeats the message from the sender so that their name will

appear

> first in the new note. The original message that I sent to you

is

> message #435. I hope that you recognize it as yours from me to

you!

>

> Again, thank you for your note to me. I really appreciate all

the

> information that you shared. I look forward to hearing from you

in

> the future.

>

>

> >

> >

> >

> >

> >

> >

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

----

> ----------

> >

[Guest guest]

How is ? Our son was diagnosed with AML Leukemia in January 2004 and has been in remission since August. It is a long road. How are you all coping?

The Talbots"L. Norman" <lsn82397@...> wrote:

Hello! Please allow me to introduce myself. I am a new member of your support group. I received information about your group from the National Down Syndrome Society. I really do need some "support" and am looking forward to getting to know some of you through this group. There is no support group for Down Syndrome children with leukemia out here on the West Coast. We are desperately seeking more information about leukemia treatment for DS kids and their reactions to chemotherapy. (We are NOT seeking medical advice!) We are just concerned parents!We are a family of three-myself ( & 'Mom'), my husband, Bill, and our 3 1/2 year old daughter, , who has Down Syndrome. We live in Long Beach, CA. Our precious was diagnosed with Acute Lymphoblastic Leukemia (A.L.L.) last

July. She is being treated at Children's Hospital in Long Beach, CA. , we discovered, has a low tolerance to chemotherapy and will probably need her doses adjusted signicantly downward. She also has not tolerated the steroid, Decadron, very well. If any of you feel comfortable sharing about your child's experience that has leukemia or went through treatment for Leukemia, we would really appreciate any information shared. Have any of your children had similar reactions to chemo or Decadron such as that of ? Do any of you know of any other Internet links that might provide more info about DS and Leukemia? I promise that any information shared is only for our own use and will NOT be disclosed to any outside party. We thank you for letting us be a part of your group and for any help or encouragement you can share. May the Lord bless you!Sincerely,

Norman

[Guest guest]

Hello, Ross and Talbot Family,

Thank you for your note! Am really glad to hear that is in

remission from AML and I hope that he is doing great! How old is

he? How did he do through his treatment? I am sure that you had

many hardships along the way too.

Thank you for your concern about . We have been worried about

her for several months now. She has experienced weeks of neutropenia

two different times and we just recently found out that she has

almost no tolerance to the drug-Mercaptapurine (6-MP). Was on

this drug at all during his treatment? is missing an enzyme in

her system called " TPMT " which breaks down the chemo and helps

eliminate it from the system. Although her counts are out of

the 'danger' zone, she still does not have the energy we are used to

seeing her with, and she looks quite pale. We have consulted a

nutritionist to help her out with some supplements and we hope this

will help pull her up again!

Well, that is a brief update. We'll look forward to hearing from you

again. Take care, and blessings to you and your family.

Norman

>

> Hello! Please allow me to introduce myself. I am a new member of

> your support group. I received information about your group from

the

> National Down Syndrome Society. I really do need some " support " and

> am looking forward to getting to know some of you through this

> group. There is no support group for Down Syndrome children with

> leukemia out here on the West Coast. We are desperately seeking

more

> information about leukemia treatment for DS kids and their

reactions

> to chemotherapy. (We are NOT seeking medical advice!) We are just

> concerned parents!

>

> We are a family of three-myself ( & 'Mom'), my husband, Bill,

> and our 3 1/2 year old daughter, , who has Down Syndrome. We

> live in Long Beach, CA.

>

> Our precious was diagnosed with Acute Lymphoblastic Leukemia

> (A.L.L.) last July. She is being treated at Children's

> Hospital in Long Beach, CA. , we discovered, has a low

> tolerance to chemotherapy and will probably need her doses adjusted

> signicantly downward. She also has not tolerated the steroid,

> Decadron, very well.

>

> If any of you feel comfortable sharing about your child's

experience

> that has leukemia or went through treatment for Leukemia, we would

> really appreciate any information shared. Have any of your children

> had similar reactions to chemo or Decadron such as that of ?

Do

> any of you know of any other Internet links that might provide more

> info about DS and Leukemia? I promise that any information shared

is

> only for our own use and will NOT be disclosed to any outside

party.

>

> We thank you for letting us be a part of your group and for any

help

> or encouragement you can share. May the Lord bless you!

>

> Sincerely,

> Norman

>

>

>

>

>

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

>

[Guest guest]

My heartfelt thanks to everyone that has responded to my request. I am

passing all the information along to my friend. I know this will be a great

help to her.

Sharon H.

Mom to , (16, DS) and , (12)

South Carolina

www.gsdss.net

" Be kinder than necessary, for everyone you meet is fighting some kind of

battle. "

" Life is too short for drama & petty things, so kiss slowly, laugh insanely,

love truly and forgive quickly. "

[Guest guest]

Nicki brings up a good point.I was unaware there was another DS Leukemia listserv. I am not sure how many of you belong to both. I would be interested in your input if we should continue this list in addition to the other list, or phase this one out. No hurt feeling....let me know what you all would like to do. PearsonModeratorFrom: nickis_nook <nickis_nook@...>Subject: [ ] DS & Leukemia Date: Monday, November 17, 2008, 12:28 AM

Hi Everybody,

Some of you may recall that my daughter, , was diagnosed with

High Risk Acute Lymphoblastic Leukemia in May.

It's been a rough road for her since then. As most (if not all) of

you know, our kids have a higher incidence of leukemia than the non-DS

population. I've met several families via different internet venues

but thought it would be a good idea to bring us all together for

support and to share experiences and information. I intend to post

this email on the DS-Leukemia group, too.

Leukemia isn't just leukemia just as DS isn't just DS. Every child is

affected differently and a lot of things factor in to the way a child

responds and/or survives: type of leukemia, age of child, tolerance to

the drugs, etc.

Replapses are all too common in kids and adults with leukemia and DS..

especially ALL.

If anyone has a loved one with DS and that loved one has had leukemia

or currently has leukemia and you would like to join this group please

sign up here:

http://curechildhoo dcancer.ning. com/main/ authorization/ signUp?

It is, of course, free. You will be able to create your own page if

you want with pics, etc. Post in the general childhood cancer forums

or just visit the Group for DS and Leukemia. Your loved one with DS

and leukemia doesn't have to be a child because many adults with DS

are treated on the leukemia protocols designed for children with DS

and leukemia.

Also, leukemia is a real fear for all parents/caregivers of the child

with DS so if you want to stay informed on the topic you are welcome

to join, too.

Thanks and have a great week.

Nicki

http://www.caringbr idge.org/ visit/queenofhea rts

[Guest guest]

I just joined. Thanks!

Beth

[ ] DS & Leukemia

Hi Everybody,Some of you may recall that my daughter, , was diagnosed withHigh Risk Acute Lymphoblastic Leukemia in May.It's been a rough road for her since then. As most (if not all) ofyou know, our kids have a higher incidence of leukemia than the non-DSpopulation. I've met several families via different internet venuesbut thought it would be a good idea to bring us all together forsupport and to share experiences and information. I intend to postthis email on the DS-Leukemia group, too.Leukemia isn't just leukemia just as DS isn't just DS. Every child isaffected differently and a lot of things factor in to the way a childresponds and/or survives: type of leukemia, age of child, tolerance tothe drugs, etc.Replapses are all too common in kids and adults with leukemia and DS..especially ALL. If anyone has a loved one with DS and that loved one has had leukemiaor currently has leukemia and you would like to join this group pleasesign up here:http://curechildhoodcancer.ning.com/main/authorization/signUp?It is, of course, free. You will be able to create your own page ifyou want with pics, etc. Post in the general childhood cancer forumsor just visit the Group for DS and Leukemia. Your loved one with DSand leukemia doesn't have to be a child because many adults with DSare treated on the leukemia protocols designed for children with DSand leukemia.Also, leukemia is a real fear for all parents/caregivers of the childwith DS so if you want to stay informed on the topic you are welcometo join, too.Thanks and have a great week.Nickihttp://www.caringbridge.org/visit/queenofhearts

[Guest guest]

,

I did not realize you were the moderator. This LIstserv has been very helpful to me. I have had access to other types of information too, they are all helpful. Just as the different DS listservs I am involved with. I stay with them all because sometimes there are things presented on one that may not be on another. I say keep this one as it has helped me a lot. I would love to be involved with the other one too. I did not know there was another. I can't tell you how many breast cancer groups I am a part of.

Thanks!

In a message dated 11/17/2008 6:42:46 A.M. Eastern Standard Time, stpearson@... writes:

Nicki brings up a good point.I was unaware there was another DS Leukemia listserv. I am not sure how many of you belong to both. I would be interested in your input if we should continue this list in addition to the other list, or phase this one out. No hurt feeling....let me know what you all would like to do. PearsonModerator

From: nickis_nook <nickis_nookbellsouth (DOT) net>Subject: [ ] DS & Leukemia Date: Monday, November 17, 2008, 12:28 AM

Hi Everybody,Some of you may recall that my daughter, , was diagnosed withHigh Risk Acute Lymphoblastic Leukemia in May.It's been a rough road for her since then. As most (if not all) ofyou know, our kids have a higher incidence of leukemia than the non-DSpopulation. I've met several families via different internet venuesbut thought it would be a good idea to bring us all together forsupport and to share experiences and information. I intend to postthis email on the DS-Leukemia group, too.Leukemia isn't just leukemia just as DS isn't just DS. Every child isaffected differently and a lot of things factor in to the way a childresponds and/or survives: type of leukemia, age of child, tolerance tothe drugs, etc.Replapses are all too common in kids and adults with leukemia and DS..especially ALL. If anyone has a loved one with DS and that loved one has had leukemiaor currently has leukemia and you would like to join this group pleasesign up here:http://curechildhoo dcancer.ning. com/main/ authorization/ signUp?It is, of course, free. You will be able to create your own page ifyou want with pics, etc. Post in the general childhood cancer forumsor just visit the Group for DS and Leukemia. Your loved one with DSand leukemia doesn't have to be a child because many adults with DSare treated on the leukemia protocols designed for children with DSand leukemia.Also, leukemia is a real fear for all parents/caregivers of the childwith DS so if you want to stay informed on the topic you are welcometo join, too.Thanks and have a great week.Nickihttp://www.caringbr idge.org/ visit/queenofhea rts Get the Moviefone Toolbar. Showtimes, theaters, movie news more!

[Guest guest]

Rick,

Jan is an inspiration to us all and you have given me so much hope by sharing her stories. When is her birthday in January? I would love to send her a card. Can you email me an address?

Thank you,

In a message dated 11/17/2008 5:19:21 P.M. Eastern Standard Time, rdill@... writes:

Hi,I looked at the site:http://curechildhoodcancer.ning.com/main/authorization/signUp? <http://curechildhoodcancer.ning.com/main/authorization/signUp?>It is not leukemia or DS specific .. only cancer and children. This, so far as I know, is the only site for discussion of the combined DS and leukemia. I note that this site is also adult friendly, since my daughter with down syndrome was an adult when she went through her cycles with AML and finally a transplant. We are five years out from the transplant. She hiked four miles in our hills on Saturday, Sunday, and today. These are tough hikes because there is lots of up and down. She is slow, but she gets through them with a smile.I am longing for the snow to fall, so we can ski together. She and I ski together and have for years. We are advanced intermediates.Rick .. dad to Jan who turns 36 in Januaryour fundraising has been with the Leukemia and Lymphoma Society. This is from a while ago. In another year or so, Jan will join another team in training. http://www.active.com/donations/fundraise_public.cfm?key=JanDil Get the Moviefone Toolbar. Showtimes, theaters, movie news more!

[Guest guest]

Is it for both DS and leukemia? I like a group affiliated with . I don't think I would have ever found the other group. My 2 cents. sonAssociate Professor of English and Graduate Literature CoordinatorSan Francisco State University, Humanities 5371600 Holloway AvenueSan Francisco, CA 94132(415) 338-3107 On Nov 17, 2008, at 3:42 AM, Pearson wrote:Nicki brings up a good point.I was unaware there was another DS Leukemia listserv. I am not sure how many of you belong to both. I would be interested in your input if we should continue this list in addition to the other list, or phase this one out.  No hurt feeling....let me know what you all would like to do.  PearsonModerator--- On Mon, 11/17/08, nickis_nook <nickis_nookbellsouth (DOT) net> wrote:From: nickis_nook <nickis_nookbellsouth (DOT) net>Subject: [ ] DS & Leukemia Date: Monday, November 17, 2008, 12:28 AMHi Everybody,Some of you may recall that my daughter, , was diagnosed withHigh Risk Acute Lymphoblastic Leukemia in May.It's been a rough road for her since then. As most (if not all) ofyou know, our kids have a higher incidence of leukemia than the non-DSpopulation. I've met several families via different internet venuesbut thought it would be a good idea to bring us all together forsupport and to share experiences and information. I intend to postthis email on the DS-Leukemia group, too.Leukemia isn't just leukemia just as DS isn't just DS. Every child isaffected differently and a lot of things factor in to the way a childresponds and/or survives: type of leukemia, age of child, tolerance tothe drugs, etc.Replapses are all too common in kids and adults with leukemia and DS..especially ALL. If anyone has a loved one with DS and that loved one has had leukemiaor currently has leukemia and you would like to join this group pleasesign up here:http://curechildhoo dcancer.ning. com/main/ authorization/ signUp?It is, of course, free. You will be able to create your own page ifyou want with pics, etc. Post in the general childhood cancer forumsor just visit the Group for DS and Leukemia. Your loved one with DSand leukemia doesn't have to be a child because many adults with DSare treated on the leukemia protocols designed for children with DSand leukemia.Also, leukemia is a real fear for all parents/caregivers of the childwith DS so if you want to stay informed on the topic you are welcometo join, too.Thanks and have a great week.Nickihttp://www.caringbr idge.org/ visit/queenofhea rts

[Guest guest]

Nicki sent our ALL kids list this info:

Once you guys join you can join the DS Leukemia group by going here:http://curechildhoodcancer.ning.com/group/leukemiadownsyndrome

Beth

[ ] DS & Leukemia Date: Monday, November 17, 2008, 12:28 AM

Hi Everybody,Some of you may recall that my daughter, , was diagnosed withHigh Risk Acute Lymphoblastic Leukemia in May.It's been a rough road for her since then. As most (if not all) ofyou know, our kids have a higher incidence of leukemia than the non-DSpopulation. I've met several families via different internet venuesbut thought it would be a good idea to bring us all together forsupport and to share experiences and information. I intend to postthis email on the DS-Leukemia group, too.Leukemia isn't just leukemia just as DS isn't just DS. Every child isaffected differently and a lot of things factor in to the way a childresponds and/or survives: type of leukemia, age of child, tolerance tothe drugs, etc.Replapses are all too common in kids and adults with leukemia and DS..especially ALL. If anyone has a loved one with DS and that loved one has had leukemiaor currently has leukemia and you would like to join this group pleasesign up here:http://curechildhoo dcancer.ning. com/main/ authorization/ signUp?It is, of course, free. You will be able to create your own page ifyou want with pics, etc. Post in the general childhood cancer forumsor just visit the Group for DS and Leukemia. Your loved one with DSand leukemia doesn't have to be a child because many adults with DSare treated on the leukemia protocols designed for children with DSand leukemia.Also, leukemia is a real fear for all parents/caregivers of the childwith DS so if you want to stay informed on the topic you are welcometo join, too.Thanks and have a great week.Nickihttp://www.caringbr idge.org/ visit/queenofhea rts

[Guest guest]

Hi,

I looked at the site:

http://curechildhoodcancer.ning.com/main/authorization/signUp?

<http://curechildhoodcancer.ning.com/main/authorization/signUp?>

It is not leukemia or DS specific .. only cancer and children. This, so

far as I know, is the only site for discussion of the combined DS and

leukemia. I note that this site is also adult friendly, since my

daughter with down syndrome was an adult when she went through her

cycles with AML and finally a transplant.

We are five years out from the transplant. She hiked four miles in our

hills on Saturday, Sunday, and today. These are tough hikes because

there is lots of up and down. She is slow, but she gets through them

with a smile.

I am longing for the snow to fall, so we can ski together. She and I

ski together and have for years. We are advanced intermediates.

Rick .. dad to Jan who turns 36 in January

our fundraising has been with the Leukemia and Lymphoma Society. This

is from a while ago. In another year or so, Jan will join another team

in training.

http://www.active.com/donations/fundraise_public.cfm?key=JanDil