Re: Troubling times are here

[Guest guest]

Dear Rick,

Although you mentioned in your last paragraph  you are not looking for

sympathy, I cannot  help it, but this message has saddened me.  You and Jan

are an inspiration to many in this group and knowing that her health is in

peril, touches our hearts.  

Thank you for taking the time for reporting this to the group and I sincerely

wish and pray that Jan will get well with the help of all that medical

professionals who are taking care of her.

I am sorry you had to interrupt your vacation.

All my best to you and your family,

Bonnie (Belgium)  

>________________________________

> De: Rick Dill <rdill@...>

>Para: DOWN-SYN@...; ;

DS_Teens_Plus ;

>Enviado: Viernes, 11 de mayo, 2012 7:20:27

>Asunto: Troubling times are here

>

>

> 

>This is just an input and we are still working things out.

>

>Three weeks ago my wife and I went on a trip we had dreamed of for years

>and planned for the last three. It was to be our first big vacation

>without kids in many, many years. The trip plan included a visit to

>Thailand and Laos with Jan's brother Steve and a friend of his being our

>guides and then an extended trip to the kingdom of Bhutan where be each

>have independently wanted to visit for many years.

>

>On our first morning in Thailand a series of calls came in on Steve's

>phone about Jan being in the hospital with a serious infection. We'd

>left a really super team of friends (and professionals) along with

>family and her support had kicked in. That was great, but the medical

>people were very worried and wanted us home. We managed the first week

>and then came back. The diagnosis of the infection was all over the

>place including a possible extremely grave fungal infection in her

>totally packed up sinus cavity.

>

>Jan's been out of the hospital for more than a week and we just spent a

>few days with some nice walks at a cabin in the mountains near Donner

>Pass, but the news isn't good. The leukemia that seemed to be gone for

>the last 8+ years is back and we will be dealing with that. The general

>approach has been agreed to by her local oncologist and also by the

>doctors who treated her in CT. Tomorrow we learn a more about the

>treatments and they probably will start almost immediately.

>

>While the outlook is cloudy, we have to look at the recent past when she

>has been able to live in her own apartment and have a very meaningful

>job, even if it was volunteer rather than for pay. With Social

>Security, she was able to be financially independent. She has had a

>remarkable life touching many and we will just have to see what the

>future holds.

>

>In this, we have had regular and fairly deep discussions with Janet.

>She understands leukemia better than we ever can and remains strong and

>keeps up her sense of humor. In the hospital, she takes control.

>Anyone in a white gown is a marshmallow. Then there are blueberries,

>and so on. She will play with the names of anyone including the

>doctors. She knows how to write on the menu that she wants popcorn and

>chocolate milk and will often get it.

>

>Rick ... dad to 29 year old Jan.

>

>p.s. we aren't looking for sympathy, but rather just reporting. We are

>all OK. We have as good a medical advice as one can ever have for a

>truly unique case. Her leukemia recurrence is a very rare type even in

>the normal population and when you put DS on it, there is very little

>previous experience to build on.

>

>

>

>

[Guest guest]

Hi Rick,

 

You and Janet and your entire family are in my prayers.  Your stories about Jan

have always inspired me when it comes to .  I see this beautiful woman

living her life the way I would like for to live hers.  Your emails are

always so insightful, especially to me because is only 10, but you have

such a rich history living with Ds...and I read and reread everything you send

us.

 

You are a phenomenal father and teacher, please keep us updated.

 

Blessings,

Jenn

Graham

832-816-7992

________________________________

From: B. <bonniand@...>

Rick Dill <rdill@...>; " "

< >

Sent: Friday, May 11, 2012 1:44 AM

Subject: Re: Troubling times are here

 

Dear Rick,

Although you mentioned in your last paragraph  you are not looking for

sympathy, I cannot  help it, but this message has saddened me.  You and Jan

are an inspiration to many in this group and knowing that her health is in

peril, touches our hearts.  

Thank you for taking the time for reporting this to the group and I sincerely

wish and pray that Jan will get well with the help of all that medical

professionals who are taking care of her.

I am sorry you had to interrupt your vacation.

All my best to you and your family,

Bonnie (Belgium)  

>________________________________

> De: Rick Dill <rdill@...>

>Para: DOWN-SYN@...; ;

DS_Teens_Plus ;

>Enviado: Viernes, 11 de mayo, 2012 7:20:27

>Asunto: Troubling times are here

>

>

> 

>This is just an input and we are still working things out.

>

>Three weeks ago my wife and I went on a trip we had dreamed of for years

>and planned for the last three. It was to be our first big vacation

>without kids in many, many years. The trip plan included a visit to

>Thailand and Laos with Jan's brother Steve and a friend of his being our

>guides and then an extended trip to the kingdom of Bhutan where be each

>have independently wanted to visit for many years.

>

>On our first morning in Thailand a series of calls came in on Steve's

>phone about Jan being in the hospital with a serious infection. We'd

>left a really super team of friends (and professionals) along with

>family and her support had kicked in. That was great, but the medical

>people were very worried and wanted us home. We managed the first week

>and then came back. The diagnosis of the infection was all over the

>place including a possible extremely grave fungal infection in her

>totally packed up sinus cavity.

>

>Jan's been out of the hospital for more than a week and we just spent a

>few days with some nice walks at a cabin in the mountains near Donner

>Pass, but the news isn't good. The leukemia that seemed to be gone for

>the last 8+ years is back and we will be dealing with that. The general

>approach has been agreed to by her local oncologist and also by the

>doctors who treated her in CT. Tomorrow we learn a more about the

>treatments and they probably will start almost immediately.

>

>While the outlook is cloudy, we have to look at the recent past when she

>has been able to live in her own apartment and have a very meaningful

>job, even if it was volunteer rather than for pay. With Social

>Security, she was able to be financially independent. She has had a

>remarkable life touching many and we will just have to see what the

>future holds.

>

>In this, we have had regular and fairly deep discussions with Janet.

>She understands leukemia better than we ever can and remains strong and

>keeps up her sense of humor. In the hospital, she takes control.

>Anyone in a white gown is a marshmallow. Then there are blueberries,

>and so on. She will play with the names of anyone including the

>doctors. She knows how to write on the menu that she wants popcorn and

>chocolate milk and will often get it.

>

>Rick ... dad to 29 year old Jan.

>

>p.s. we aren't looking for sympathy, but rather just reporting. We are

>all OK. We have as good a medical advice as one can ever have for a

>truly unique case. Her leukemia recurrence is a very rare type even in

>the normal population and when you put DS on it, there is very little

>previous experience to build on.

>

>

>

>

[Guest guest]

Rick

My thoughts and prayers are with your entire family.

Peace

Rick Dill <rdill@...> wrote:

>This is just an input and we are still working things out.

>

>Three weeks ago my wife and I went on a trip we had dreamed of for years

>and planned for the last three. It was to be our first big vacation

>without kids in many, many years. The trip plan included a visit to

>Thailand and Laos with Jan's brother Steve and a friend of his being our

>guides and then an extended trip to the kingdom of Bhutan where be each

>have independently wanted to visit for many years.

>

>On our first morning in Thailand a series of calls came in on Steve's

>phone about Jan being in the hospital with a serious infection. We'd

>left a really super team of friends (and professionals) along with

>family and her support had kicked in. That was great, but the medical

>people were very worried and wanted us home. We managed the first week

>and then came back. The diagnosis of the infection was all over the

>place including a possible extremely grave fungal infection in her

>totally packed up sinus cavity.

>

>Jan's been out of the hospital for more than a week and we just spent a

>few days with some nice walks at a cabin in the mountains near Donner

>Pass, but the news isn't good. The leukemia that seemed to be gone for

>the last 8+ years is back and we will be dealing with that. The general

>approach has been agreed to by her local oncologist and also by the

>doctors who treated her in CT. Tomorrow we learn a more about the

>treatments and they probably will start almost immediately.

>

>While the outlook is cloudy, we have to look at the recent past when she

>has been able to live in her own apartment and have a very meaningful

>job, even if it was volunteer rather than for pay. With Social

>Security, she was able to be financially independent. She has had a

>remarkable life touching many and we will just have to see what the

>future holds.

>

>In this, we have had regular and fairly deep discussions with Janet.

>She understands leukemia better than we ever can and remains strong and

>keeps up her sense of humor. In the hospital, she takes control.

>Anyone in a white gown is a marshmallow. Then there are blueberries,

>and so on. She will play with the names of anyone including the

>doctors. She knows how to write on the menu that she wants popcorn and

>chocolate milk and will often get it.

>

>Rick ... dad to 29 year old Jan.

>

>p.s. we aren't looking for sympathy, but rather just reporting. We are

>all OK. We have as good a medical advice as one can ever have for a

>truly unique case. Her leukemia recurrence is a very rare type even in

>the normal population and when you put DS on it, there is very little

>previous experience to build on.

[Guest guest]

Dear Rick,

I am speechless and so very, very sad to read this email. Over the

past 13 years, your emails have given me courage, wisdom, joy and alas,

sometimes sorrow. Jan's incredible strength and bravery, tenacity and spunk

have encouraged me countless times.

I will be praying for Jan and the rest of your family. I know you

aren't looking for sympathy, you never are... but please accept my heartfelt,

cross country, cyber hugs and well wishes.

Much love and many prayers from the Feda's in Pittsburgh

Connie

In a message dated 5/11/2012 1:20:31 A.M. Eastern Daylight Time,

rdill@... writes:

This is just an input and we are still working things out.

Three weeks ago my wife and I went on a trip we had dreamed of for years

and planned for the last three. It was to be our first big vacation

without kids in many, many years. The trip plan included a visit to

Thailand and Laos with Jan's brother Steve and a friend of his being our

guides and then an extended trip to the kingdom of Bhutan where be each

have independently wanted to visit for many years.

On our first morning in Thailand a series of calls came in on Steve's

phone about Jan being in the hospital with a serious infection. We'd

left a really super team of friends (and professionals) along with

family and her support had kicked in. That was great, but the medical

people were very worried and wanted us home. We managed the first week

and then came back. The diagnosis of the infection was all over the

place including a possible extremely grave fungal infection in her

totally packed up sinus cavity.

Jan's been out of the hospital for more than a week and we just spent a

few days with some nice walks at a cabin in the mountains near Donner

Pass, but the news isn't good. The leukemia that seemed to be gone for

the last 8+ years is back and we will be dealing with that. The general

approach has been agreed to by her local oncologist and also by the

doctors who treated her in CT. Tomorrow we learn a more about the

treatments and they probably will start almost immediately.

While the outlook is cloudy, we have to look at the recent past when she

has been able to live in her own apartment and have a very meaningful

job, even if it was volunteer rather than for pay. With Social

Security, she was able to be financially independent. She has had a

remarkable life touching many and we will just have to see what the

future holds.

In this, we have had regular and fairly deep discussions with Janet.

She understands leukemia better than we ever can and remains strong and

keeps up her sense of humor. In the hospital, she takes control.

Anyone in a white gown is a marshmallow. Then there are blueberries,

and so on. She will play with the names of anyone including the

doctors. She knows how to write on the menu that she wants popcorn and

chocolate milk and will often get it.

Rick ... dad to 29 year old Jan.

p.s. we aren't looking for sympathy, but rather just reporting. We are

all OK. We have as good a medical advice as one can ever have for a

truly unique case. Her leukemia recurrence is a very rare type even in

the normal population and when you put DS on it, there is very little

previous experience to build on.

------------------------------------

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

Dear Rick, 

I very rarely post on anymore as life is so busy and overwhelming, but

I am still here and have, like you, been reading since 1993/4!

I am so sorry to hear that leukaemia has rared its ugly head again in Jan's and

your lives :-( I am currently into my 5th month of 6mths chemotherapy for breast

cancer so know well some of the challenges coming your way. If chemo is the go

for Jan try and advocate a port for easy acess...

regards from

>

> This is just an input and we are still working things out.

>

> Three weeks ago my wife and I went on a trip we had dreamed of for years

> and planned for the last three. It was to be our first big vacation

> without kids in many, many years. The trip plan included a visit to

> Thailand and Laos with Jan's brother Steve and a friend of his being our

> guides and then an extended trip to the kingdom of Bhutan where be each

> have independently wanted to visit for many years.

>

> On our first morning in Thailand a series of calls came in on Steve's

> phone about Jan being in the hospital with a serious infection. We'd

> left a really super team of friends (and professionals) along with

> family and her support had kicked in. That was great, but the medical

> people were very worried and wanted us home. We managed the first week

> and then came back. The diagnosis of the infection was all over the

> place including a possible extremely grave fungal infection in her

> totally packed up sinus cavity.

>

> Jan's been out of the hospital for more than a week and we just spent a

> few days with some nice walks at a cabin in the mountains near Donner

> Pass, but the news isn't good. The leukemia that seemed to be gone for

> the last 8+ years is back and we will be dealing with that. The general

> approach has been agreed to by her local oncologist and also by the

> doctors who treated her in CT. Tomorrow we learn a more about the

> treatments and they probably will start almost immediately.

>

> While the outlook is cloudy, we have to look at the recent past when she

> has been able to live in her own apartment and have a very meaningful

> job, even if it was volunteer rather than for pay. With Social

> Security, she was able to be financially independent. She has had a

> remarkable life touching many and we will just have to see what the

> future holds.

>

> In this, we have had regular and fairly deep discussions with Janet.

> She understands leukemia better than we ever can and remains strong and

> keeps up her sense of humor. In the hospital, she takes control.

> Anyone in a white gown is a marshmallow. Then there are blueberries,

> and so on. She will play with the names of anyone including the

> doctors. She knows how to write on the menu that she wants popcorn and

> chocolate milk and will often get it.

>

> Rick ... dad to 29 year old Jan.

>

> p.s. we aren't looking for sympathy, but rather just reporting. We are

> all OK. We have as good a medical advice as one can ever have for a

> truly unique case. Her leukemia recurrence is a very rare type even in

> the normal population and when you put DS on it, there is very little

> previous experience to build on.

>

[Guest guest]

Well stated Connie. I totally agree. You can count on us for prayers too.

Spilios

Billing Service Operations Manager

330.564.2617

3333 S Arlington Rd

Akron, OH 44312

kspilios@...

" We help Doctors get paid for what they do "

Sent from my iPhone

On May 11, 2012, at 8:06 AM, kindafunny@... wrote:

> Dear Rick,

> I am speechless and so very, very sad to read this email. Over the

> past 13 years, your emails have given me courage, wisdom, joy and alas,

> sometimes sorrow. Jan's incredible strength and bravery, tenacity and spunk

> have encouraged me countless times.

> I will be praying for Jan and the rest of your family. I know you

> aren't looking for sympathy, you never are... but please accept my heartfelt,

> cross country, cyber hugs and well wishes.

> Much love and many prayers from the Feda's in Pittsburgh

>

> Connie

>

>

> In a message dated 5/11/2012 1:20:31 A.M. Eastern Daylight Time,

> rdill@... writes:

>

> This is just an input and we are still working things out.

>

> Three weeks ago my wife and I went on a trip we had dreamed of for years

> and planned for the last three. It was to be our first big vacation

> without kids in many, many years. The trip plan included a visit to

> Thailand and Laos with Jan's brother Steve and a friend of his being our

> guides and then an extended trip to the kingdom of Bhutan where be each

> have independently wanted to visit for many years.

>

> On our first morning in Thailand a series of calls came in on Steve's

> phone about Jan being in the hospital with a serious infection. We'd

> left a really super team of friends (and professionals) along with

> family and her support had kicked in. That was great, but the medical

> people were very worried and wanted us home. We managed the first week

> and then came back. The diagnosis of the infection was all over the

> place including a possible extremely grave fungal infection in her

> totally packed up sinus cavity.

>

> Jan's been out of the hospital for more than a week and we just spent a

> few days with some nice walks at a cabin in the mountains near Donner

> Pass, but the news isn't good. The leukemia that seemed to be gone for

> the last 8+ years is back and we will be dealing with that. The general

> approach has been agreed to by her local oncologist and also by the

> doctors who treated her in CT. Tomorrow we learn a more about the

> treatments and they probably will start almost immediately.

>

> While the outlook is cloudy, we have to look at the recent past when she

> has been able to live in her own apartment and have a very meaningful

> job, even if it was volunteer rather than for pay. With Social

> Security, she was able to be financially independent. She has had a

> remarkable life touching many and we will just have to see what the

> future holds.

>

> In this, we have had regular and fairly deep discussions with Janet.

> She understands leukemia better than we ever can and remains strong and

> keeps up her sense of humor. In the hospital, she takes control.

> Anyone in a white gown is a marshmallow. Then there are blueberries,

> and so on. She will play with the names of anyone including the

> doctors. She knows how to write on the menu that she wants popcorn and

> chocolate milk and will often get it.

>

> Rick ... dad to 29 year old Jan.

>

> p.s. we aren't looking for sympathy, but rather just reporting. We are

> all OK. We have as good a medical advice as one can ever have for a

> truly unique case. Her leukemia recurrence is a very rare type even in

> the normal population and when you put DS on it, there is very little

> previous experience to build on.

>

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

>

> Click reply to all for messages to go to the list. Just hit reply for

> messages to go to the sender of the message.

[Guest guest]

Rick, Prayers for Jan and your family's strength to keep up with everything you

all are facing. For several years we have taken much encouragement from Jan's

journey and what kind of a tough cookie she is! I sure her tenacity will serve

her well now!

Best wishes,

Barbara Rizk and family

On May 10, 2012, at 10:20 PM, Rick Dill wrote:

> This is just an input and we are still working things out.

>

> Three weeks ago my wife and I went on a trip we had dreamed of for years

> and planned for the last three. It was to be our first big vacation

> without kids in many, many years. The trip plan included a visit to

> Thailand and Laos with Jan's brother Steve and a friend of his being our

> guides and then an extended trip to the kingdom of Bhutan where be each

> have independently wanted to visit for many years.

>

> On our first morning in Thailand a series of calls came in on Steve's

> phone about Jan being in the hospital with a serious infection. We'd

> left a really super team of friends (and professionals) along with

> family and her support had kicked in. That was great, but the medical

> people were very worried and wanted us home. We managed the first week

> and then came back. The diagnosis of the infection was all over the

> place including a possible extremely grave fungal infection in her

> totally packed up sinus cavity.

>

> Jan's been out of the hospital for more than a week and we just spent a

> few days with some nice walks at a cabin in the mountains near Donner

> Pass, but the news isn't good. The leukemia that seemed to be gone for

> the last 8+ years is back and we will be dealing with that. The general

> approach has been agreed to by her local oncologist and also by the

> doctors who treated her in CT. Tomorrow we learn a more about the

> treatments and they probably will start almost immediately.

>

> While the outlook is cloudy, we have to look at the recent past when she

> has been able to live in her own apartment and have a very meaningful

> job, even if it was volunteer rather than for pay. With Social

> Security, she was able to be financially independent. She has had a

> remarkable life touching many and we will just have to see what the

> future holds.

>

> In this, we have had regular and fairly deep discussions with Janet.

> She understands leukemia better than we ever can and remains strong and

> keeps up her sense of humor. In the hospital, she takes control.

> Anyone in a white gown is a marshmallow. Then there are blueberries,

> and so on. She will play with the names of anyone including the

> doctors. She knows how to write on the menu that she wants popcorn and

> chocolate milk and will often get it.

>

> Rick ... dad to 29 year old Jan.

>

> p.s. we aren't looking for sympathy, but rather just reporting. We are

> all OK. We have as good a medical advice as one can ever have for a

> truly unique case. Her leukemia recurrence is a very rare type even in

> the normal population and when you put DS on it, there is very little

> previous experience to build on.

>

[Guest guest]

Rick, our prayers are with Jan and your family.