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Update on Jan

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See Darbi at http://embark.to/darbisplace

Update on Jan

> Many of you have been through far more, but here's the update on Jan.

>

> The infection of the leg was merely the indicator that her immune system

> had shut down. We're still trying to get to the bottom of this. The

> third operation was partly to get a bone marrow smple and it turned out

> to be very difficult and the best guess was that she had acute lukemia.

> Well, the good news is in and, while her marrow and blood are thoroughly

> messed up, she doesn't seem to have lukemia (perhaps yet).

>

> We found very high sugar levels. It could be the infections (there are

> multiple and different ones) ... or it could be either type I or tpe II

> diabeties. Time and blood tests will tell on that. This could have

> been one of the contributors to the low immune system behaviour.

>

> Jan's leg is still swollen. She still has a lot of pain. The fevers

> are gone and we are into physical therapy and perhaps physical rehab.

> She whent to PT today, but couldn't come close to walking.

>

> So we're coming along. It will be a while. Jan's still in the hospital

> and will probably be there for a little while more. Her spirits are

> good. I came home early from my trip, although phone calls probably

> worked almost as well for her as my being there. Like many of our kids,

> she's won the hearts of the nurses and doctors.

>

> Rick

>

>

>

>

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Rick,

Thanks for keeping us updated on Jan.

I'm still praying for her.......

Many of you have been through far more, but here's the update on Jan.

Don't feel we are any less interested because her situation may be less severe

than someone else's.............

Di

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In a message dated 2/25/02 9:26:42 PM Canada Central Standard Time,

rdill@... writes:

> She went in today for the consult on bone marrow transplant. The story

> is that they won't do that until she falls out of remission. So that is

> put off for a while (maybe forever).

Hi Rick,

I'm curious, do they try harvesting Jan's own stem cells for transplant

before using a donar? Just wondering, cause I was talking to the wife of a

man who's beeing treated for luekimia (I work on the hemotolgy floor).

anyway he's in for his 3rd round of chemo, she said something about next time

they come he gets x no. days of chemo then x no. days of radiation and then

they harvest his stem cells. then try to use them to do the transplant. I

really cant remember how long she said they leave between the harvest and

transplant tho. :-)

I thought it was pretty interesting, I didn't even realize that they attempt

to use the patients own bone marrow to do the transplants but that's what it

sounded like to me. It's really amazing what they can do, how far they've

come since they first started treating these dieseases.

I'm really glad Jan is doing so well with her treatments. Hopefully she'll

be able to get back to an apartment of her own soon. :-)

Joy

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a friend of mines' mom just had that procedure done with the stem cells last

october. she is doing really good considering all she has been through. I

believe she has lymphoma.

ker

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I will continue to keep Jan in my thoughts and prayers.

Does she still have the same e-mail address?

Jill

Mom to Mac & Kit

Update on Jan

The good news is that Jan got out of the hospital on Friday. She's

through this round of chemo for her leukemia recurrance. Depending on

her response to it, we will get a further plan.

Her brother was home on Friday and set up her new laptop (gift from her

brothers) so she would have email on it.

The bad news is that she went back to the hospital on Saturday with a

fever. That's not a good thing when you have NO immune system. Today

she was tired and slept a lot, but I did have some good exchanges with

her on the phone and on messenger.

Jan needs prayers and thoughts. This is a very hard time for her, but

we have to remember the last year when she was in remission. Those days

were good and important .. every one of them.

While you are at it give a hug to your special one.

Rick dad to 30 year old Jan

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rdill@... writes:

<< back into remission and rebuilding >>

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

This is great news! Way to be a fighter, Jan! I'll still continue to keep

you in my prayers.

Terry

Mom to Evan, 7, DS and to Kohl, 19 months, nda

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Rick,

The older Danny gets (now 14), the more I appreciate

your hanging in there with us for so many years and

giving us insight into issues we may be dealing with

in the future.

Thanks from Bev.

__________________________________________________

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Rick,

The older Danny gets (now 14), the more I appreciate

your hanging in there with us for so many years and

giving us insight into issues we may be dealing with

in the future.

Thanks from Bev.

__________________________________________________

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I will second what Bev said, she said it very well.

Thanks Rick.

Sharon H.

Mom to , (13, DS) and , (10)

South Carolina

Re: Update on Jan

Rick,

The older Danny gets (now 14), the more I appreciate

your hanging in there with us for so many years and

giving us insight into issues we may be dealing with

in the future.

Thanks from Bev.

__________________________________________________

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I will second what Bev said, she said it very well.

Thanks Rick.

Sharon H.

Mom to , (13, DS) and , (10)

South Carolina

Re: Update on Jan

Rick,

The older Danny gets (now 14), the more I appreciate

your hanging in there with us for so many years and

giving us insight into issues we may be dealing with

in the future.

Thanks from Bev.

__________________________________________________

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Does she acquire any immunities from her brother? Does she need vaccinations

all over again?

- Becky

In a message dated 10/28/2005 1:30:47 AM Eastern Standard Time,

rdill@... writes:

This should have been obvious to us. Jan's immune system got reset to

ZERO by her bone marrow transplant. In late August the preventative

antibiodics had been discontinued. This was good (and now slightly bad)

news.

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Sounds like it was a really good thing that you had her with you when this

all happened! Someone was surely looking out for you/Jan/the family.

((((hugs))))

To a speedy and full recovery,

Kym...mom to and 4 others

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Thank the Lord he was watching over her. I know cellulitis can be deadly.

Hopefully this will be the last thing Jan has to go through.

loree

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Glad to hear you caught it early, Rick. My dad has had cellulitis a couple of

times and it is quite uncomfortable. Hope to hear that Jan is back on her feet

soon!

Jackie

-------------- Original message --------------

> Thank the Lord he was watching over her. I know cellulitis can be deadly.

> Hopefully this will be the last thing Jan has to go through.

>

> loree

>

>

>

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Rick,

I'm so glad things have turned for the better. I always love hearing about Jan!

Send her our love!

Di

Update on Jan

This is a very mixed message.

Six weeks ago I went East and spent a long (and hard) weekend closing

out Jan's apartment in New Haven, CT. We shipped a few boxes west,

threw out lots of stuff and took things to various charity groups and

gave lots to her neighbors in the apartment building.

Then, she and I flew to California with Jan on a " one way " ticket. She

settled into a room in our new barn/utility bulding where whe had a

little of her own freedom. We started hiking together and began our new

life on a new coast.

Things are falling in place remarkably. She's signed into a local

support center and has an assigned caseworker. I've been tuned into the

housing and it looks very positive that she will have her own apartment

early next years. We've gone through the initial interview and apartment.

Last Friday night she went to a dance with another young woman she's

known for years while us parents went out for a good dinner together.

Jan was not feeling great, but she met two young men, one of whom was a

good dancer.

Saturday she didn't feel good. Her face hurt, which I couldn't figure

out at all. I talked to her Mom about her pains (face) and mine (foot)

and she told me to look for a rash. The rash was there at suppertime

beside her nose. I took a picture of it and sent the picture in an

email to Dr. Mom. Then I decided to call Mom and get her opinion.

It was simple. Jan had cellulitis, probably from a strep infection and

needed to be seen. So I went and got her out of bed and took her to the

ER. That was before 9 PM and she was getting worse quickly. I left at

3 am and she had meds to reduce her fever, a lot of saline dripping in

and also a bunch of antibiodics. They moved her out of the ER to the

ICU .. and a couple of days ago to a regular hospital bed.

It was very scary. Initially her blood pressure was very low ..

probably septic shock. A day later it was high (not at all normal for

her). The inflammation grew quickly to cover the left side of her face

with pen markings to show its limits.

OK .. the antibiodics kicked in. They got changed a few times, but

Tuesday it broke and she's now well on the way to recovery.

This should have been obvious to us. Jan's immune system got reset to

ZERO by her bone marrow transplant. In late August the preventative

antibiodics had been discontinued. This was good (and now slightly bad)

news.

She will be out of the hospital tomorrow or the next day. In the

meantime I've gotten her applied for medicaid (medi-cal here) which will

be retroactive, put in the application for her apartment, and changed

her address and applied for a new Social Security card. OK, in the same

period we also started work on our future (historic) house, lifting it

off its 140 year old posts so that it cold get a real foundation and a

basement. Yes, there is a day job with some hard schedule items next week.

Mom is coming on Monday after a heavy weekend in the hospital.

What we've learned is that the BMT may cure the leukemia, but it opens

up a whole new set of issues. Now, I wouldn't go back and not do the

BMT. Without it Jan wouldn't be here .. never mind how miserable it was.

Rick .. dad to 32 year old Jan .. past four years of hard times with

leukemia etc .. but onto new adventures

I'm still holding out hopes for skiing with Jan this winter!

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

messages to go to the sender of the message.

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RSYOSH@... wrote:

> Does she acquire any immunities from her brother? Does she need

> vaccinations all over again?

> - Becky

>

> In a message dated 10/28/2005 1:30:47 AM Eastern Standard Time,

> rdill@... writes:

>

>

> This should have been obvious to us. Jan's immune system got

> reset to

> ZERO by her bone marrow transplant. In late August the preventative

> antibiodics had been discontinued. This was good (and now

> slightly bad)

> news.

>

>

Becky, No Jan probably didn't get any immunities from her brother. This

will have us scrambling to see just what vaccinations she has had and

will need. Still the doctor who cared for her in the hospital has a

plausible explanation for the infection. It may well have come from

rubbing and scratching her face with dirty hands. Jan's hygene isn't

great and she does have a habit of rubbing her face. It is probably

easier to get her to wash her hands well many times a day than to fix

the habit. At least that is where we are going to start.

Anyway, she's home from the hospital tonight. I'll be calling on

friends for help next week because I've got to head back East while her

Mom has an emergency operation. This all developed today when I'd been

planning to fly Mom here early next week. Instead I'll be taking the

red eye from San Francisco to NY on Monday night.

Angie, your observation is right, my wife and I are not together, but

not because we want it that way. I have housing to get completed here

in CA, which just got underway a week or so ago after seven years of

frustration with the bureaucracy and my wife has a 93 year old mother

who we have to figure out how to move from nursing home in CT to an

equivalent place here. We will get together however .. sometime .. my

current target is early spring.

...........

Anyway, we work as a team, even when in different places. Next week Jan

will be with friends while I go back east to be with my wife when she

has surgery. This was unexpected. I had tickets for her to come west

next week. I'll be back in time to take Jan to an appointment with her

new doctor in two weeks.

Rick .. dad to Jan and her two brothers and husband to (Dr. Mom)

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In a message dated 10/29/2005 3:25:58 A.M. Eastern Standard Time,

rdill@... writes:

be calling on

friends for help next week because I've got to head back East while her

Mom has an emergency operation. This all developed today when I'd been

planning to fly Mom here early next week.

Boy you can't seem to catch a break can you. I know that you are at that

certain age, as we are, when everything becomes your responsibility, the kids,

your mom and you have your own needs to take care of also. I pray all goes

well with your wife and things are soon back on track!

Loree

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Things are really coming together. Great idea doing a Special Friends Club. How did you find the other women to join the club? Rick Dill <rdill@...> wrote: For the last six months Jan has been in California. Programs are coming together. She is currently in a day workshop program which she likes. We've just finished organizing a Special Friends Club which is restricted to six young women who have ds and live on their own. Last weekend was their second party. The went bowling and then went to one of the apartments for refreshments. Hopefully this will move forward into events that the girls plan for themselves.Jan's apartment has finally come through. We will go look at the

apartments and she will get a chance to pick the ones she likes best. They are very late getting the confirmation out. They want her to move in within a week or two. Fortunately, I think we can make it. This whole tenant selection thing has been run poorly, but in the end it seems to have worked out for Jan and some number of people like her. So tomorrow, we will go look at the new apartments (just being completed) rather than go on her Leukemia Society Team in Training hike (likely to be ten muddy miles in the rain), but she did a ten mile hike in the mud last week. She was jogging a little at the end, so she is up to this.The big hike into the Grand Canyon in in May. Thanks to those who have contributed to the Leukemia and Lymphoma society supporting her.Rick .. dad to 33 year old Jan, cured of leukemia (we think) and now healthy and paying backhttp://www.active.com/donate/hfdsvmb/JanDill

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imho this is the number one determinor of placement - what will utimately

make the person in question happy?

I have fought to keep my daughter ( - now age 14) in Inclusion

because she loves being around the NDA kids and feeling like " one of the bunch "

when they treat her with respect. Since her days in a counterproductive

preschool program for disabled kids (mostly austitic!), she has fought being

grouped

with other disabled kids. In her younger days she would refused to sit in

" circle time " in any program ( such as ESY) that was based grouping kids with

disabilities together. For years I didn't do ESY (except for the year we got a

school district to do it at a reg ed day camp run at one of the schools)

because she really did not enjoy typical ESY.

That may be changing. Last summer she had a great time in a special ESY

program that was a social skills/academic morning class (for certificate-bound

students) combined with an afternoon Parks and Recs program (NDA) for field

trips. She couldn't wait to get on the bus in the morning. In the past she

participated in Special Olympics soccer (where she was put on " skills " ) and

really

didn't like it. This spring she did Athletics (Track and Field) and LOVED it

- even winning one of 3 " good sportsmanship " awards. All I had to say was

" track practice " and she would run for her shoes and climb in the car. (This

fall as she starts HS, the girls' track coach is also one of the SpecEd

teachers so getting them to let her practice with the reguar track team is not

going to be a problem). One of the girls from the team (DS, 17) has expressed

interest in getting together socially.

The turning point in my thinking really came a couple of years ago. I was

talking to one parent whose daughter (MR but not DS) was really much " higher

functioning " than , Yet she specially placed her child in Life Skills

classes. I was really surprised. But she told me that being in Gen Ed made her

daughter really unhappy, because she was keenly aware of the fact that she

couldn't keep up. In Life Skills she had the ability to feel like she was

succeeding. So for her, Like Skills was the right placement - because it made

her

happy.

So while all-Inclusion was once the best placement for , a more mixed

program is working for her now. As time goes on I will continue to take my

cues from my daughter and provide opportunites for her to increase her " quality

of life " - based on what makes her happy.

- Becky

In a message dated 6/21/2006 1:57:34 AM Eastern Standard Time,

rdill@... writes:

She is going to a workshop day program, something many of us might have

said that we'd never put our grown kids into. Well, Jan loves it.

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Rick, Thanks for the update. I love hearing about Jan and her endeavors. She

is such an inspiration to all of us.

Di

Update on Jan

> It has been a very busy year. After four months of diligently training

> and working out, Jan did the Hike for Discovery to raise funds for

> leukemia research. The hike in the Grand Canyon was difficult for her,

> but she never made a complaint. She didn't get quite as far as the rest

> of the party because she was slow going down the very steep trail and

> they wanted everyone out by 1 pm. Still, she was an inspiration for her

> team leader who hiked with her.

>

> Having Jan in an athletic event with non-disabled adults was a real

> challenge and it took a while for them to accept her, but that

> occurred. I believe that we gave the rest of the team and the leukemia

> society some real sensitivity training.

>

> Jan was one of the top fund raisers with almost $7000 raised in a

> program that will provide millions of dollars for research. Thanks to

> all who gave money and/or support.

>

> After the hike, we continued with further hiking in Arizona and Utah,

> some of the hikes being up very steep trails with big drop-offs. We had

> a great time and returned home to find that the paperwork for her

> apartment had been completed and that she could pick it up, get a check,

> and pay the security deposit and first month's rent.

>

> The apartment is a real win. It is a new studio in a building which is

> all rent subsidized studios. There are a dozen developmentally delayed

> in the group and all of them got the federal Section-8 rent subsidy

> along with their apartment. That caps the rent at 30% of their income

> which means that Jan can live on her social security and be financially

> independent.

>

> She is going to a workshop day program, something many of us might have

> said that we'd never put our grown kids into. Well, Jan loves it. She

> sees people she can relate to, works when there is work to be done and

> takes classes when there isn't. She is the one who gets herself up at

> six so she can be ready for Outreach, our public transportation for the

> needy.

>

> Jan also has a new Independent Life Skills counsellor. is

> athletic, the first counsellor Jan ever had who wasn't a couch potato.

> She also did a triathalon for Leukemia earlier this spring.

>

> So things are good here. Jan has really been working on some of the

> issues we have, whether it is dress, keeping clean, etc. She moved in

> last Saturday and seems to be doing just fine, coping when things don't

> go quite as expected.

>

> Rick ... dad to 33 year old Jan .. yes she does have down syndrome, but

> no leukemia any more

>

>

>

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

> messages to go to the sender of the message.

>

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It has been a very busy year. After four months of diligently training

and working out, Jan did the Hike for Discovery to raise funds for

leukemia research. The hike in the Grand Canyon was difficult for her,

but she never made a complaint. She didn't get quite as far as the rest

of the party because she was slow going down the very steep trail and

they wanted everyone out by 1 pm. Still, she was an inspiration for her

team leader who hiked with her.

Having Jan in an athletic event with non-disabled adults was a real

challenge and it took a while for them to accept her, but that

occurred. I believe that we gave the rest of the team and the leukemia

society some real sensitivity training.

Jan was one of the top fund raisers with almost $7000 raised in a

program that will provide millions of dollars for research. Thanks to

all who gave money and/or support.

After the hike, we continued with further hiking in Arizona and Utah,

some of the hikes being up very steep trails with big drop-offs. We had

a great time and returned home to find that the paperwork for her

apartment had been completed and that she could pick it up, get a check,

and pay the security deposit and first month's rent.

The apartment is a real win. It is a new studio in a building which is

all rent subsidized studios. There are a dozen developmentally delayed

in the group and all of them got the federal Section-8 rent subsidy

along with their apartment. That caps the rent at 30% of their income

which means that Jan can live on her social security and be financially

independent.

She is going to a workshop day program, something many of us might have

said that we'd never put our grown kids into. Well, Jan loves it. She

sees people she can relate to, works when there is work to be done and

takes classes when there isn't. She is the one who gets herself up at

six so she can be ready for Outreach, our public transportation for the

needy.

Jan also has a new Independent Life Skills counsellor. is

athletic, the first counsellor Jan ever had who wasn't a couch potato.

She also did a triathalon for Leukemia earlier this spring.

So things are good here. Jan has really been working on some of the

issues we have, whether it is dress, keeping clean, etc. She moved in

last Saturday and seems to be doing just fine, coping when things don't

go quite as expected.

Rick ... dad to 33 year old Jan .. yes she does have down syndrome, but

no leukemia any more

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KUDOS Becky for both you and . I also am now continuing to fight for

inclusion for Micah because he is happy, learning from his peers and

otherwise thriving in this environment. I am not naive however to the thought

that

he may one day have more difficulty than success and it might not be the right

placement. I think that is the key. We have to remember that our

children's education is not about US it is about THEM. What works today might

not

tomorrow. I will continue to fight for my son to get what is best for HIM be

that fully included or partially or not at all. Parents of special needs

children have to make some very hard decisions that parents of typical kids

never

face. I think if we remember to be advocates for what is best for them and

support each other in our decisions we will all do a-ok!! So Becky, my hat's

off to you and being the parent that needs!!

Loree

So while all-Inclusion was once the best placement for , a more mixed

program is working for her now. As time goes on I will continue to take my

cues from my daughter and provide opportunites for her to increase her

" quality

of life " - based on what makes her happy.

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You can't keep a good woman down! Give her a hug from and me.

Gem

On Friday, July 6, 2012, Rick Dill <rdill@...> wrote:

>

>

> While the doctors seem to have reason to worry about what is coming, Jan

> is currently healthy although perhaps a little worried. She doesn't

> want to talk about how she is. The doctors think that AML will be on

> its way back, big time unless treatment works. She's had radiation

> which seems to have pretty well cleared up the mass behind her eye which

> was largely leukemic white cells. She has the first of two rounds of

> chemo at much less intensity than the usual induction treatment and the

> second is due in a couple of weeks. After that, they are talking about a

> lymphocyte infusion from her brother to hopefully put her into an

> extended remission. We keep hearing that her case doesn't have history

> from others like it to get much guidance. She probably will be part of

> a study Stanford is doing which might provide guidance for others in the

> future.

>

> The good news is that she acts healthy! Here's a quick example of a day

> .. the Fourth of July! It was a very full day.

>

> Jan and I are at a cabin at Donner Lake in the mountains of California.

> Her Mom is home working and will be with us starting this weekend. We

> got up early and had a quick breakfast. Then we got on bicycles and

> rode to town (Truckee). Jan walked the hills, but we were on the parade

> route by 9:50, ten minutes before the parade started. For a small town,

> this is a big parade. It took about an hour for everything to pass us.

> Both Jan and I took a lot of pictures. Toward the end, she went off and

> got each of us a bagel and also a soda and water for me.

>

> After the parade we rode the rest of the way to town where we window

> shopped and had lunch out. Eating out is something Jan really likes.

> Then we rode home. This route had essentially no hills and she just

> zoomed ahead of me, arriving ten minutes before I did. The total

> distance out and back was about eleven miles.

>

> She watched videos and did word puzzles until a fairly late supper and

> then we went out on a dock to watch the fireworks. They were fired from

> the end of the lake and we had really good seats for the show.

>

> This isn't bad for someone who finished chemo a week before. The future

> may be difficult, but we are living good days now.

>

> Rick .. dad to 39 year old Jan who is post AML treatments, a bone marrow

> transplant, and now into unexpected new challenges. The

> eight year

> remission was wonderful, but it's come to an end.

>

>

--

*Not for ourselves, but for the world were we born.*

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