Troubling times are here

[Guest guest]

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.