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Jan UPDATE

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A week ago, Jan passed the hundred day marker since her transplant.

That's the one where they stop calling things acute. She is at home

(most of the time with Mom and me working on the far coast). Right now

I'm home and Mom's working.

She is coming back from this a whole lot more slowly than she has the

other challenges she's had, but so far, so good. Her hair is very thin

(from the last chemo), but hopefully it will sometime come back in as it

did before. Her appetite is very low and for the first time we have to

patiently push her to eat a little more. If we push too hard, she

overdoes it and will throw up. The result is that she's back down near

100, her high school weight.

Jan's energy level is low and she complains about muscle and joint pain,

but she and I took a two hour (slow) walk in our nearby park. We

probably went three miles, stopping frequently on the uphill. That was

Friday. We then went to the store (where she stays in the car) and got

treats to hand out for halloween. When we got home, she donned a mask

and manned (or is that womanned) the front door, greeting all the kids

who came.

Yesterday's walk was only a half mile, cut short because she ached too

much. We will see about today.

Thanks for your prayers and support. We're beginning to think about

" cured " , but there is still a lot of uncertainty ahead. Whenever we

have a bad day, both parents panic a little.

Rick .. dad to 30 year old Jan .. hopefully cured of AML and comfortable

with her DS

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  • 4 months later...
Guest guest

Rick,

We all rejoice with you! Thank you so much for keeping us updated on

her progress.

Mom to Ramona 20ds

In a message dated 3/31/2004 7:26:32 AM Pacific Standard Time,

writes:

> Message: 12

> Date: Wed, 31 Mar 2004 00:09:25 -0800

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

> Subject: Jan update

>

> I've been away for a month and Jan was in the hospital when I left (the

> pick line she'd had infected), but that didn't really set her back much.

>

> At this point we rejoice in her recovery. The leukemia is gone, the

> transplant complications are under control, and she has recovered her

> strength. We worried for a while about her wasting away because her

> weight kept dropping, but it has settled in the low 90's and she feels

> good.

>

> She is getting vigorous exercise multiple times a week and now does a

> little jogging because it feels good. The other day she got back to

> shooting baskets which is a good motivator.

>

> I'll be back home this weekend and we will have time for some really

> good hikes.

>

> This truly is a miracle and I have to thank the prayers and the people

> who just kept her in their thoughts. Sure we aren't already out of the

> woods, but at this point it is clear that the bone marrow transplant has

> gotten her back to quality life.

>

> Now if the immune system will rebuild, she will be able to go back to

> her apartment and to travel.

>

> Rick ... dad to 31 year old Jan .. post AML and T-cell transplant.

> Her blood doesn't have DS and it also has a y-chromosome

>

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