Re: Hi! I'm Anya's mommy. AML

[Guest guest]

Anya sounds like a sweetheart! Our son is 2.5 years old and was diagnosed with AML in January of this year. He is set to start Intensification (Round #5) next week. I believe he is on the POG # 2971 Protocol. He has had a bit of nausea but nothing severe. Lot's of transfusions and an infection in his central line. is also a real trooper, amazing that you can even keep kid's this age in bed for this long! His greatest discomfort so far appears to be when the Nurse's stick the thermometer under his arm. So fingers are crossed that all of these kid's fly through this and don't remember a thing.

Let us know if we can help with any specifics.

- Ross <walexander2@...> wrote:

Anya turned 3 years old in March. She was diagnosed with AML two weeks ago after 6 months of testing for low platelets. Her gastroenterologist caught the low platelet counts when he was running testing for Celiacs disease.We live in the upstate of South Carolina.She started chemo. on April 27. She did so well while in the hospital. She got sick only once and that may have been from eating too many Gummi bears. She never acted as if she was in any pain after any of the surgical procedures!! She is acting like her normal self now. She loves playing with her little brother Sam.When she had her echocardiogram last week (her first since the NICU), they found that she has a PDA. We'll be going to ton to take care of that in the next couple of years.In March, her

pediatrician found that she has high TSH levels, so we'll be starting treatment of her thyroid in the next couple of months.Are there any parents out there who have children that have been through the AML protocal?Thank you,

[Guest guest]

Hi ,

My name is Simone. I have three children and my middle one, , was diagnosed with AML when she was 1 year old. is doing fine, but her protocol is different from the one in the US (we live in Brazil). 's chemo lasted for a year and a half and I know that in the US the protocol lasts for only 6 months for children with DS.

I'm glad to know that Anya is doing fine. Please feel free to ask anything you want. All the best,

Simone.

[Guest guest]

Hi ,

My son had AML 3 years ago and pretty much flew through treatment.

He was only hospitalized with F & N a couple of times, although he did

have to have his CVC replaced once. also had an echo done

before they started the nast daunorubicin and they found that he had

sub-aortic stenosis and had to have it repaired a month after he had

his last LP. I wouldnt worry too much about the PDA as they can fix

the by heart catheterization now and Anya shouldnt have to undergo

open heart surgery for it.

Hugs

> Anya turned 3 years old in March. She was diagnosed with AML two

> weeks ago after 6 months of testing for low platelets. Her

> gastroenterologist caught the low platelet counts when he was

running

> testing for Celiacs disease.

>

> We live in the upstate of South Carolina.

>

> She started chemo. on April 27. She did so well while in the

> hospital. She got sick only once and that may have been from

eating

> too many Gummi bears. She never acted as if she was in any pain

> after any of the surgical procedures!! She is acting like her

normal

> self now. She loves playing with her little brother Sam.

>

> When she had her echocardiogram last week (her first since the

NICU),

> they found that she has a PDA. We'll be going to ton to

take

> care of that in the next couple of years.

>

> In March, her pediatrician found that she has high TSH levels, so

> we'll be starting treatment of her thyroid in the next couple of

> months.

>

> Are there any parents out there who have children that have been

> through the AML protocal?

>

> Thank you,

>

[Guest guest]

Thats too funny!! hates the thermometer under his arm. You

can take his blood pressure, listen to his heart, but dont you dare

try and take his temp.

Hugs

> Anya turned 3 years old in March. She was diagnosed with AML two

> weeks ago after 6 months of testing for low platelets. Her

> gastroenterologist caught the low platelet counts when he was

running

> testing for Celiacs disease.

>

> We live in the upstate of South Carolina.

>

> She started chemo. on April 27. She did so well while in the

> hospital. She got sick only once and that may have been from

eating

> too many Gummi bears. She never acted as if she was in any pain

> after any of the surgical procedures!! She is acting like her

normal

> self now. She loves playing with her little brother Sam.

>

> When she had her echocardiogram last week (her first since the

NICU),

> they found that she has a PDA. We'll be going to ton to

take

> care of that in the next couple of years.

>

> In March, her pediatrician found that she has high TSH levels, so

> we'll be starting treatment of her thyroid in the next couple of

> months.

>

> Are there any parents out there who have children that have been

> through the AML protocal?

>

> Thank you,

>

>

>

>

[Guest guest]

A year and a half for AML?? That sucks. I thought that 6 months

was bad enough..

Hugs

> Hi ,

> My name is Simone. I have three children and my middle one,

, was diagnosed with AML when she was 1 year old. is

doing fine, but her protocol is different from the one in the US (we

live in Brazil). 's chemo lasted for a year and a half and I

know that in the US the protocol lasts for only 6 months for

children with DS.

> I'm glad to know that Anya is doing fine. Please feel free to ask

anything you want. All the best,

>

> Simone.

[Guest guest]

Tell me about it!!! I kept telling 's doctor about the American protocol and how come it was so long in Brazil, but she had to complete the whole year and a half. At the end I was begging her to finish it earlier..... Hugs,

'

Simone.

[ ] Re: Hi! I'm Anya's mommy. AML

A year and a half for AML?? That sucks. I thought that 6 months was bad enough..Hugs> Hi ,> My name is Simone. I have three children and my middle one, , was diagnosed with AML when she was 1 year old. is doing fine, but her protocol is different from the one in the US (we live in Brazil). 's chemo lasted for a year and a half and I know that in the US the protocol lasts for only 6 months for children with DS. > I'm glad to know that Anya is doing fine. Please feel free to ask anything you want. All the best,> > Simone.

[Guest guest]

Hi,

I just wanted to mention to you that we live in Winston-Salem, NC. We just

moved here from California so Ethan could attend The Special Children's School.

We don't know many people, so if you are ever around, please let us know. I

love to meet others who have either gone through or are currently going through

similar trials.

Anya turned 3 years old in March. She was diagnosed with AML two

weeks ago after 6 months of testing for low platelets. Her

gastroenterologist caught the low platelet counts when he was running

testing for Celiacs disease.

We live in the upstate of South Carolina.

She started chemo. on April 27. She did so well while in the

hospital. She got sick only once and that may have been from eating

too many Gummi bears. She never acted as if she was in any pain

after any of the surgical procedures!! She is acting like her normal

self now. She loves playing with her little brother Sam.

When she had her echocardiogram last week (her first since the NICU),

they found that she has a PDA. We'll be going to ton to take

care of that in the next couple of years.

In March, her pediatrician found that she has high TSH levels, so

we'll be starting treatment of her thyroid in the next couple of

months.

Are there any parents out there who have children that have been

through the AML protocal?

Thank you,

[Guest guest]

Anya pulls up her shirt so that the nurses can get the job done!

> > Anya turned 3 years old in March. She was diagnosed with AML two

> > weeks ago after 6 months of testing for low platelets. Her

> > gastroenterologist caught the low platelet counts when he was

> running

> > testing for Celiacs disease.

> >

> > We live in the upstate of South Carolina.

> >

> > She started chemo. on April 27. She did so well while in the

> > hospital. She got sick only once and that may have been from

> eating

> > too many Gummi bears. She never acted as if she was in any pain

> > after any of the surgical procedures!! She is acting like her

> normal

> > self now. She loves playing with her little brother Sam.

> >

> > When she had her echocardiogram last week (her first since the

> NICU),

> > they found that she has a PDA. We'll be going to ton to

> take

> > care of that in the next couple of years.

> >

> > In March, her pediatrician found that she has high TSH levels, so

> > we'll be starting treatment of her thyroid in the next couple of

> > months.

> >

> > Are there any parents out there who have children that have been

> > through the AML protocal?

> >

> > Thank you,

> >

> >

> >

> >

[Guest guest]

Thats way better than having to fight. will do that to have

his heart listened to but he has had that done a million times since

he was born.

Hugs

> > > Anya turned 3 years old in March. She was diagnosed with AML

two

> > > weeks ago after 6 months of testing for low platelets. Her

> > > gastroenterologist caught the low platelet counts when he was

> > running

> > > testing for Celiacs disease.

> > >

> > > We live in the upstate of South Carolina.

> > >

> > > She started chemo. on April 27. She did so well while in the

> > > hospital. She got sick only once and that may have been from

> > eating

> > > too many Gummi bears. She never acted as if she was in any

pain

> > > after any of the surgical procedures!! She is acting like her

> > normal

> > > self now. She loves playing with her little brother Sam.

> > >

> > > When she had her echocardiogram last week (her first since the

> > NICU),

> > > they found that she has a PDA. We'll be going to ton

to

> > take

> > > care of that in the next couple of years.

> > >

> > > In March, her pediatrician found that she has high TSH levels,

so

> > > we'll be starting treatment of her thyroid in the next couple

of

> > > months.

> > >

> > > Are there any parents out there who have children that have

been

> > > through the AML protocal?

> > >

> > > Thank you,

> > >

> > >

> > >

> > >