Re: ROLL CALL.... We need to get this group going...

[Guest guest]

I am , Mom to Chloe 7 years old, DS, dx with pre B ALL in December 2006, completed treatment on study AALL0331 on March 2, 2009. The first year was VERY rough on her, with many hospitalizations, two major infections and the loss of one port due to a fungal infection. She has been doing well off treatment with one scare back in May when she was limping for no obvious reason. We took her to ER, they admitted her under fear of relapse, they did an MRI, Spinal, and BMA and all were clear. WHEW!! She has been feeling fine since going OT, but it is still taking quite a while in my opinion for her WBC to start creeping into the low normal range....anyone else OT have this problem? It makes me nervous each month at her clinic checks. But her Oncologist isn't concerned. All her other counts are great, and her ANC lingers around 1300 pretty consistantly.

We live in Michigan, I have another son age 10, and we are a homeschooling family.

[ ] ROLL CALL.... We need to get this group going...

Hi!!!! I'm Tania.... Mom to Nate, 4 years old, DS, diagnosed on July 7, 2009 with pre B ALL.

I'm married to Ken and we live in Schaumburg IL. We are being treated at Lutheran General Hospital in Park Ridge IL.

Nate has just started Interim Maint in the study AALL0331. Nate was pretty much in the hospital for the first month of induction. He gained 16 lbs in 3 weeks d/t Dex... He has lost all but 2 lbs since then and is doing pretty well. Thursday was day 1 of the next 3 years until we are done with therapy.

I am a nurse and am presently working part time. Nate had a trach for 6 months prior to his diagnoses d/t a massive airway infection that still is unexplained. Things just went down hill after his adenoids were taken out in November of 2008. I think it was all tied in to the Leukemia, however they did do a BM and no blast were seen... just some myelodysplasia which they attributed to the infection.

Once things settle down I will be working on starting a support group for dual diagnosis of DS and Leukemia in conjunction with our local parent support group Ups for Downs.

[Guest guest]

I am , mom to Mickey, age 12, DS, diagnosed with ALL on 12/7/04, off treatment on 2/1/07! We are approaching tee 5 year anniversary of her diagnosis. Some days it seems like another lifetime and other times it seems like last week. We are blessed that she responded to treatment well and had just a few side effects like chemo-induced asthma and steroid induced diabetes, but otherwise endured treatment like a champ!!We live in Indianapolis. I am married to and we also have a wonderful 10 year old son, Brad. Mickey was treated at Riley Children's Hospital and will begin annual check ups after her 6-month check up in February! From: taniabsn@...Date: Sun, 15 Nov 2009 16:12:32 +0000Subject: [ ] ROLL CALL.... We need to get this group going...

Hi!!!! I'm Tania.... Mom to Nate, 4 years old, DS, diagnosed on July 7, 2009 with pre B ALL.

I'm married to Ken and we live in Schaumburg IL. We are being treated at Lutheran General Hospital in Park Ridge IL.

Nate has just started Interim Maint in the study AALL0331. Nate was pretty much in the hospital for the first month of induction. He gained 16 lbs in 3 weeks d/t Dex... He has lost all but 2 lbs since then and is doing pretty well. Thursday was day 1 of the next 3 years until we are done with therapy.

I am a nurse and am presently working part time. Nate had a trach for 6 months prior to his diagnoses d/t a massive airway infection that still is unexplained. Things just went down hill after his adenoids were taken out in November of 2008. I think it was all tied in to the Leukemia, however they did do a BM and no blast were seen... just some myelodysplasia which they attributed to the infection.

Once things settle down I will be working on starting a support group for dual diagnosis of DS and Leukemia in conjunction with our local parent support group Ups for Downs.

Windows 7: I wanted simpler, now it's simpler. I'm a rock star.

[Guest guest]

Hi Tania,I'm Thirza, mom to Tristan age 15, almost 16, dx with pre-B ALL February 1998 (POG 9605) Tristan's been off treatment for 9 years!!! I actually don't think about leukemia very much anymore - never thought that would happen! We live in Houston and Tristan was treated at Texas Children's Hospital. He's doing pretty well and is quite healthy apart from thyroid issues and sleep apnea, he was also recently diagnosed with cataracts in both eyes which his oncologist said was probably a long term effect from his leukemia treatment. Hi , I also homeschool Tristan and my 3 other children all girls, ages 8, 6 and 3.Rick, thank you for continuing to share about Jan and what is going on in her life - it is always so encouraging for me to read about adults with DS especially since my son is just a couple of years away from that transition!blessings,ThirzaOn Nov 15, 2009, at 11:03 AM, sunshels@... wrote:I am , Mom to Chloe 7 years old, DS, dx with pre B ALL in December 2006, completed treatment on study AALL0331 on March 2, 2009.  The first year was VERY rough on her, with many hospitalizations, two major infections and the loss of one port due to a fungal infection.  She has been doing well off treatment with one scare back in May when she was limping for no obvious reason.  We took her to ER, they admitted her under fear of relapse, they did an MRI, Spinal, and BMA and all were clear. WHEW!! She has been feeling fine since going OT, but it is still taking quite a while in my opinion for her WBC to start creeping into the low normal range....anyone else OT have this problem?  It makes me nervous each month at her clinic checks.  But her Oncologist isn't concerned.  All her other counts are great, and her ANC lingers around 1300 pretty consistantly. We live in Michigan, I have another son age 10, and we are a homeschooling family.  [ ] ROLL CALL.... We need to get this group going... Hi!!!! I'm Tania.... Mom to Nate, 4 years old, DS, diagnosed on July 7, 2009 with pre B ALL. I'm married to Ken and we live in Schaumburg IL. We are being treated at Lutheran General Hospital in Park Ridge IL.Nate has just started Interim Maint in the study AALL0331. Nate was pretty much in the hospital for the first month of induction. He gained 16 lbs in 3 weeks d/t Dex... He has lost all but 2 lbs since then and is doing pretty well. Thursday was day 1 of the next 3 years until we are done with therapy.I am a nurse and am presently working part time. Nate had a trach for 6 months prior to his diagnoses d/t a massive airway infection that still is unexplained. Things just went down hill after his adenoids were taken out in November of 2008. I think it was all tied in to the Leukemia, however they did do a BM and no blast were seen... just some myelodysplasia which they attributed to the infection.Once things settle down I will be working on starting a support group for dual diagnosis of DS and Leukemia in conjunction with our local parent support group Ups for Downs.

[Guest guest]

Welcome Tania,

I am Connie , mom to , 7 years old, DS, diagnosed on August 11, 2007 with pre B ALL. We live in Loveland, CO and his treatment is at Children's Hospital in Denver. He has been on maintence now for 1 1/2 years. He was in the same study but but I took him off during Interim Maint for the consolidation period was too hard on him. He had an NG tube for 5 months, which they finally converted to a G-tube once he got onto maintenance. He had mucusitis so bad during consolidation it scared his esophogus and created a recurring stricture that has to be dilated every 6 to 8 weeks. It's been rough, but he has been a real trooper. He is doing well now that I don't have to worry about nutrition, and we have a routine down. He will be finished at Christmas 2010. What a family gift that will be. Look forward to hearing how things are going.

Connie

From: taniabsn1 <taniabsn@...> Sent: Sun, November 15, 2009 9:12:32 AMSubject: [ ] ROLL CALL.... We need to get this group going...

Hi!!!! I'm Tania.... Mom to Nate, 4 years old, DS, diagnosed on July 7, 2009 with pre B ALL. I'm married to Ken and we live in Schaumburg IL. We are being treated at Lutheran General Hospital in Park Ridge IL.Nate has just started Interim Maint in the study AALL0331. Nate was pretty much in the hospital for the first month of induction. He gained 16 lbs in 3 weeks d/t Dex... He has lost all but 2 lbs since then and is doing pretty well. Thursday was day 1 of the next 3 years until we are done with therapy.I am a nurse and am presently working part time. Nate had a trach for 6 months prior to his diagnoses d/t a massive airway infection that still is unexplained. Things just went down hill after his adenoids were taken out in November of 2008. I think it was all tied in to the Leukemia, however they did do a BM and no blast were seen... just some myelodysplasia which they attributed to the infection.Once things settle

down I will be working on starting a support group for dual diagnosis of DS and Leukemia in conjunction with our local parent support group Ups for Downs.

[Guest guest]

Hi! My name is Ann. I'm mom to who is 6 years old. He was diagnosed with Pre-B ALL in June of 2005. He finished treatment at the end of August of 2008. He was treated at Children's Hospital in Minneapolis. He did fairly well on treatment except that he had a horrible time with dexamethasone. We eventually gave him antidepressants on the days he was on steroids and it made a huge difference. He's been a completely different kid off treatment, full of energy and happy most of the time. He has peripheral neuropathy and wears AFO's, but is getting stronger and stronger every day. We're still dealing with chronic diarrhea that started about 2 1/2 years into treatment. He tested negative for celiac (both blood tests and biopsies) and positive for lactose intolerance. When taking him off dairy didn't improve things we started him on a gluten free diet. Things were better for a few months but have slowly gotten bad again. We went to the Mayo Clinic this summer but they didn't give us any new ideas. We just saw a new GI doctor at the University of Minnesota last week who has some new theories and has ordered new tests. I'm hopeful we'll finally get this figured out!

My husband and I have 6 kids. 's little brother was just 4 months old when was diagnosed with leukemia and I hardly remember him as a baby. Our youngest was just born in August and we're all thoroughly enjoying her! I don't update 's website very often anymore, but here's the address: www.caringbridge.org/visit/johnbremer

Ann

> > From: taniabsn@...> Date: Sun, 15 Nov 2009 16:12:32 +0000> Subject: [ ] ROLL CALL.... We need to get this group going...> > Hi!!!! I'm Tania.... Mom to Nate, 4 years old, DS, diagnosed on July 7, 2009 with pre B ALL. > > I'm married to Ken and we live in Schaumburg IL. We are being treated at Lutheran General Hospital in Park Ridge IL.> > Nate has just started Interim Maint in the study AALL0331. Nate was pretty much in the hospital for the first month of induction. He gained 16 lbs in 3 weeks d/t Dex... He has lost all but 2 lbs since then and is doing pretty well. Thursday was day 1 of the next 3 years until we are done with therapy.> > I am a nurse and am presently working part time. Nate had a trach for 6 months prior to his diagnoses d/t a massive airway infection that still is unexplained. Things just went down hill after his adenoids were taken out in November of 2008. I think it was all tied in to the Leukemia, however they did do a BM and no blast were seen... just some myelodysplasia which they attributed to the infection.> > Once things settle down I will be working on starting a support group for dual diagnosis of DS and Leukemia in conjunction with our local parent support group Ups for Downs.> > > > > > ------------------------------------> >

[Guest guest]

Hi, I'm - mum to , 10 yrs old, DS, dx 13 Oct 2004 with pre B ALL.I'm married to , we have 4 kids - is the baby. We live in Adelaide Australia. went into remission 21 days after treatment started and has been that way ever since. He lost all his skills while having chemo and it was like having a brand new baby again. also had a toxic reaction to the asparaginase and went into liver failure. We almost lost him then and he has liver damage now to contend with.

We have our 5 yr 'All Clear' appointment on Dec 4, so we are waiting with baited breath.Good luck to you all,and

[Guest guest]

Hello friends. My name is Dolezan and I am Mom to 2 kids. Jenna, who is a healthy 10 year old and (DS) who is 4. was dx at the age of 6 months with AML. I don't know the specifics of the AML because I was diagnosed with breast cancer at the same time. I was also preparing to have his A/V Canal heart defect repaired. That is how we found out he had AML. and I went through chemotherapy together. Quite a story and we are both doing great these days. was treated at Children's Memorial in Chicago. (I wonder if I will ever stop looking for petechia on . )

So nice to connect with everyone. We should start a Facebook group. Anyone interested? If so, send me your Facebook "name" and I will start it and invite you. I will leave the group open so that anyone can join.

Thanks!

Dolezan

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

[Guest guest]

You have a very good point. I will make it closed and people can "request to join" and only admins can approve requests after we verify the identity of the person requesting. I can make several of us admins for this purpose.

I started the group. It is called Down Syndrome Leukemia Support. Search for it and click the Request to Join link. I will get an email and approve you. As soon as I approve you, I will make you all Admins so that you can also approve and invite others to join that may not be a part of this message board.

I hope it is OK that I went ahead and did this. It is completely voluntary on all of your parts. This Facebook page does not replace this forum. Just another place to network and give others out there another resource.

Thank you!

[Guest guest]

,

Have I met you? Do you attend "'s Upside Down Ball"?

[Guest guest]

I need an idea for the group picture on FB. We could all post a picture of our children in the photo albums and periodically feature each child as the profile picture.

[Guest guest]

Hello all,

Our son was diagnosed on 9/7/09 with Pre B ALL. We start IM today! We have been very fortunate so far, in that he has not really had any setbacks (other than a quick case of H1N1). We pray for more of the same ;-)

is seen at Cook Children's Hospital in Fort Worth.

Great idea about the roll call!

Craig

DFW, TX

[Guest guest]

Hi Everyone

My son is 8 years old and was diagnosed in May 2008 with Pre-b ALL. He was

put in the standard High Risk due to a MRD of .12 at end of induction. He has

done " okay' with treatment so far, in-patient about 50 days the last year and a

half. We are almost a year into maintenance and are still experimenting with

his 6mp and methotrexate doses. All his counts continued to crash this past

summer but after 4 months of IVIG infusions he is doing much better.

My big concern now is his daily stomach pains. All his chemistries are ok

(nothing alarmingly elevated) and an ultrasound provided no clues. His stomach

has been bothering him daily for months and affects his eating. The GI doc

plans to do another endoscopy (had one a year ago due to bloody stools). Have

any of your kids had ongoing stomach pains during maintenance?

I love reading about all of your kids journeys and pray for the best for all of

our kids.

Jo (mom to , , Matt and wife to Jim)

---- Connie Gliott <conniegliott@...> wrote:

> Welcome Tania,

> I am Connie , mom to , 7 years old, DS, diagnosed on August 11, 2007 with

pre B ALL.  We live in Loveland, CO  and his treatment is at Children's

Hospital in Denver.  He has been on maintence now for 1 1/2 years.  He was in

the same study but but I took him off during Interim Maint for the consolidation

period was too hard on him.  He had an NG tube for 5 months, which they finally

converted to a G-tube once he got onto maintenance.  He had mucusitis so bad

during consolidation it scared his esophogus and created a recurring stricture

that has to be dilated every 6 to 8 weeks.  It's been rough, but he has been a

real trooper.  He is doing well now that I don't have to worry about nutrition,

and we have a routine down.  He will be finished at Christmas 2010.  What a

family gift that will be.  Look forward to hearing how things are going.

>

> Connie

>

>

>

>

> ________________________________

> From: taniabsn1 <taniabsn@...>

>

> Sent: Sun, November 15, 2009 9:12:32 AM

> Subject: [ ] ROLL CALL.... We need to get this group going...

>

>  

> Hi!!!! I'm Tania.... Mom to Nate, 4 years old, DS, diagnosed on July 7, 2009

with pre B ALL.

>

> I'm married to Ken and we live in Schaumburg IL. We are being treated at

Lutheran General Hospital in Park Ridge IL.

>

> Nate has just started Interim Maint in the study AALL0331. Nate was pretty

much in the hospital for the first month of induction. He gained 16 lbs in 3

weeks d/t Dex... He has lost all but 2 lbs since then and is doing pretty well.

Thursday was day 1 of the next 3 years until we are done with therapy.

>

> I am a nurse and am presently working part time. Nate had a trach for 6 months

prior to his diagnoses d/t a massive airway infection that still is unexplained.

Things just went down hill after his adenoids were taken out in November of

2008. I think it was all tied in to the Leukemia, however they did do a BM and

no blast were seen... just some myelodysplasia which they attributed to the

infection.

>

> Once things settle down I will be working on starting a support group for dual

diagnosis of DS and Leukemia in conjunction with our local parent support group

Ups for Downs.

>

>

>

>

>

>

[Guest guest]

I am so glad to hear that weathered H1N1OK. I have been so worried about how that is going to affect folks going through chemo this winter--, mom of Zach, age 2 and in remission from AML (finished chemo 1/09) sonAssociate Professor of English and Graduate Literature CoordinatorSan Francisco State University, Humanities 5371600 Holloway AvenueSan Francisco, CA 94132(415) 338-3107 On Nov 16, 2009, at 6:08 AM, Craig wrote: Hello all, Our son was diagnosed on 9/7/09 with Pre B ALL. We start IM today! We have been very fortunate so far, in that he has not really had any setbacks (other than a quick case of H1N1). We pray for more of the same ;-) is seen at Cook Children's Hospital in Fort Worth. Great idea about the roll call! Craig DFW, TX

[Guest guest]

I think a facebook group is a good idea. You may want to leave it open, though. When I joined facebook, I looked at some Down syndrome groups, but didn't join them when I saw that, while the sites were legitimate, they had been hacked by some immature people who had written cruel remarks. (I figured I didn't need that, and it renewed my sense of how far we still have to go.) sonAssociate Professor of English and Graduate Literature CoordinatorSan Francisco State University, Humanities 5371600 Holloway AvenueSan Francisco, CA 94132(415) 338-3107 On Nov 16, 2009, at 7:57 AM, <Bluyz1966@...> <Bluyz1966@...> wrote: Hello friends. My name is Dolezan and I am Mom to 2 kids. Jenna, who is a healthy 10 year old and (DS) who is 4. was dx at the age of 6 months with AML. I don't know the specifics of the AML because I was diagnosed with breast cancer at the same time. I was also preparing to have his A/V Canal heart defect repaired. That is how we found out he had AML. and I went through chemotherapy together. Quite a story and we are both doing great these days. was treated at Children's Memorial in Chicago. (I wonder if I will ever stop looking for petechia on . ) So nice to connect with everyone. We should start a Facebook group. Anyone interested? If so, send me your Facebook "name" and I will start it and invite you. I will leave the group open so that anyone can join. Thanks! Dolezan http://www.caringbridge.org/visit/lindadolezan

[Guest guest]

I am interested in the facebook group for sure. Also I wanted to say that if anybody on here homeschools their kids with DS, I am part on an online Homeschooling and DS group on and we also have a page on Facebook too. Let me know if you are interested! I am glad to see some action on this list

Oh, my facebook name is Seiger .

Re: [ ] ROLL CALL.... We need to get this group going...

I think a facebook group is a good idea. You may want to leave it open, though. When I joined facebook, I looked at some Down syndrome groups, but didn't join them when I saw that, while the sites were legitimate, they had been hacked by some immature people who had written cruel remarks. (I figured I didn't need that, and it renewed my sense of how far we still have to go.)

son

Associate Professor of English and Graduate Literature Coordinator

San Francisco State University, Humanities 537

1600 Holloway Avenue

San Francisco, CA 94132

(415) 338-3107

On Nov 16, 2009, at 7:57 AM, <Bluyz1966aol> <Bluyz1966aol> wrote:

Hello friends. My name is Dolezan and I am Mom to 2 kids. Jenna, who is a healthy 10 year old and (DS) who is 4. was dx at the age of 6 months with AML. I don't know the specifics of the AML because I was diagnosed with breast cancer at the sa me time. I was also preparing to have his A/V Canal heart defect repaired. That is how we found out he had AML. and I went through chemotherapy together. Quite a story and we are both doing great these days. was treated at Children's Memorial in Chicago. (I wonder if I will ever stop looking for petechia on . )

So nice to connect with everyone. We should start a Facebook group. Anyone interested? If so, send me your Facebook "name" and I will start it and invite you. I will leave the group open so that anyone can join.

Thanks!

Dolezan

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

[Guest guest]

I am Rick, dad to 36 year old Janet. Her AML came in her late 20's

which is quite unusual. At that point in life the average incidence of

leukemia is probably below that of the general population. She did well

with chemo and even grew her hair back by 2002 and was a glowing

bridesmaid at her older brother's wedding.

Shortly after that the remission failed and it was clear that the only

path to survival was a bone marrow transplant. Fortunately the same

brother was a match. This time the chemo to put her into remission ,

fludarabine (sp?), hit her with a rare side effect that damaged her

lungs resulting in something like a week on a ventilator.

She had the transplant six years ago, a most miserable experience, but

came through it although to took several months for her to make the

break between wasting away and recovery. I find it difficult to

recommend the transplant as anything but last resort.

Today she has her own apartment a half hour from where we live and lives

as independently as she can with about five hours a week of life skills

help. She usually visits us on weekends and does a pretty amazing

amount of hiking in hour local mountain park .. usually six to eight

miles a weekend. At this point she is healthy and on no medications at all.

We still deal with the cognition issues that make independent living

hard, but she has become a well known and respected person in every

community where she has a presence.

Rick Dill, New Almaden, CA ... looking forward to winter and

spirited skiing with Jan

[Guest guest]

Just requested to join...great idea!

Craig

From: "Bluyz1966@..." <Bluyz1966@...> Sent: Mon, November 16, 2009 11:49:29 AMSubject: Re: [ ] ROLL CALL.... We need to get this group going...

You have a very good point. I will make it closed and people can "request to join" and only admins can approve requests after we verify the identity of the person requesting. I can make several of us admins for this purpose.

I started the group. It is called Down Syndrome Leukemia Support. Search for it and click the Request to Join link. I will get an email and approve you. As soon as I approve you, I will make you all Admins so that you can also approve and invite others to join that may not be a part of this message board.

I hope it is OK that I went ahead and did this. It is completely voluntary on all of your parts. This Facebook page does not replace this forum. Just another place to network and give others out there another resource.

Thank you!