AUGUST Third 2016----Great News and an Idea for Bellingham Friends
Dianne is doing so well so fast that they were able to go home to Bellingham yesterday! YAY! Based on observing how much work it is for Dianne and Vince to do all the medical processes required right now we (Debbie and I) think that they could use some help in Bellingham.
A sustained (the next six weeks at least) organized (with roles and responsibilities) effort to support them both with the day-to-day tasks would be really helpful. It was simple enough for us while they were living at our place--it will take a little more organization and direction from them to do it in Bellingham. But Bellingham has a great reputation for community organizing so I am sure you all can get it done. :)
Why Dianne Got to University Medical Center and What is Happening Next
Dear Family and Friends,
As many of you know, Dianne and I are in Seattle seeking treatment at the UW Medical Center. We have created this Care Bridge web page to bring you up to date on what’s going on and as a vehicle for sharing information going forward. As you might imagine this is a very busy and emotional time for our family. We are very grateful for your concern and friendship.
A Little Background
On and off for about a year now, Dianne has been dealing with a skin problem. Unfortunately, the problem masked early symptoms that are also signs of leukemia. There are plenty of details that are often part of these situations, at this point they aren’t relevant to what needs to happen moving forward or to any help that you all might give us.
Dianne has acute myeloid leukemia, AML, a type of leukemia that doesn’t manifest in the blood tests but interferes with blood cell production in the bone marrow.
The bad news is that it is that AML is a really bad form of leukemia. The good news is that The Cancer Care Alliance in Seattle is one of the leading centers for the research and treatment of this disease in the world.
Where We Are This Weekend July 9-10
The medical staff is completing more in-depth, genetic tests of her bone marrow to see what treatment protocols will work best for her particular version of AML. We are being presented with options for different levels of treatment, which have varying degrees of risk versus benefit. With as much information as possible, we will decide which next steps we (she) wants to take. But in general, the next steps are weeks of chemo therapy, of varying degrees of harshness, in order to bring Dianne’s AML into remission. If that is successful we understand that remission generally lasts for a year or so, with the main statistical probability that the cancer will return, and she will need a stem cell transplant. Those are the very basics at this time.
All the Practical Information You Need
UW Medical Center, Unit 8 SA, Room 8456
The nursing unit phone number is (206) 598-0700.
Dianne’s direct room phone number is (206) 906 7492.
Responses to questions people have asked, will ask, or want to ask.
· Dianne’s Care Bridge web page will be our vehicle for communicating consistent and timely information to you so that Vince can focus on Dianne and the doctors. We’d like to keep his cell phone free for critical family communications.
· Please feel free to leave comments and thoughts on the site. We want to stay connected with all of you.
· I know that we haven’t answered all the possible questions folks have. We just don’t have all the answers yet, such as;
o How long the treatment is going to be?
o Whether we will be in-patient or outpatient?
o What all the physical effects from the chemotherapy will be (though they are the usual that intense chemo cancer treatment impacts).
· People are welcome to visit if they are not ill with colds, flu or any other infectious disease. This really is standard for any hospital but is particularly important for cancer units.
· Short visits are best. Dianne tires easily and is having a lot of procedures and assessments by doctors.
· Visiting is good and good for Dianne—but cancer treatment is particularly difficult on the patients so we ask that you take this approach
1. Check here the day before in case there is a reason the following day is not good—we will post information about that.
2. Call the nurses station to check about visiting times
3. Don’t always expect to see Vince—he may not be there or may be involved with other issues.
4. As per above, plan for a short visit---patients in this context tire easily
Visiting Status Today July 10—Dianne is going to be in and out of tests—but this is a good day to visit.
For those coming from out of town, use Google Maps to find the medical center, which is on the south end of the UWcampus. But definitely call ahead. We wouldn't want you make that long a trip and not being able to get to see her.
Parking is free on Sunday. Otherwise,it is pretty expensive
park in the medical center parking lot across the street,
walk through the tunnel to the main entrance,
follow the signs to the Montlake elevators,
take the elevator to the 8th floor,
turn right out of the elevators
and another right at the next corner,
through the double doors
and then check into the nursing station right there.
And remember to wash and gel your hands. Can’t do too much of that.
· Blood donations:
o You are welcome to donate blood. It will go into the common pool but I think it might help if you are saying that you are donating for a certain person. I have read that blood of younger people is better than that of older, but I am not sure if this is a confirmed, hard truth. And certainly having blood available in the blood banks is better than not having it available, and it does get old and less useful the longer is sits after being donated.
o Actually, hospital food is really good these days, especially in such a fancy hospital as the U of W. We don’t have anywhere to store the food in Dianne’s room, and we can’t take back out to others. So bringing food, though natural and intuitively spontaneous thing people do, is not particularly helpful right now for Dianne.
- Unfortunately, fresh flowers or plants of any kind cannot be taken into the unit.
One Final Note
This information can and may change. We will try to keep things updated on this web page, but please don’t assume that it all is. And please be patient with us if updates are not forthcoming. We don’t know what kind of side effects Dianne might experience from her treatment. Plans may change,and we may need to go silent for a while as we adjust to new outcomes and alter our decisions about how to go forward.