Marcia's news for December 12th

Hello Everyone:

Today we have some serious news for you.

The 'Acute Graft versus Host Disease' (GVHD) that we told you about in our last entry has now become a much more dangerous problem because it did not respond to the initial and most common course of treatment which is steroids and several other drugs. GVHD is a condition in which cells in the donor marrow see the recipient’s tissues as foreign and react against them. This creates massive inflammation which then leads to infection. It can occur on the skin as a rash, and Marcia has a bit of that, and it can also show up in the liver. However it is most lethal in the digestive tract and that is what she is fighting now. This is not a staph or other type of infection, although the system can be so weakened by it that those occur.

As we said, the first course of attack for it is the steroids, and treatment with those for more than a week did not work at all. Yesterday she finished up another treatment attempt that is called Antithymocyte globulin or ATG. This consists of four days of IV treatment in increasing doses. It is a very heavy protocol and some patients do not handle it well. Unfortunately this treatment has the effect of antibodies to the T cells to "back them off" so to speak, which further lowers an already fragile immune system and even if successful leaves the patient even more vulnerable to all kinds of infections, internal and external. And even if successful, it does not guarantee that the bone marrow transplant itself will succeed in treating the original disease.

We waited through this week to know more and see how she tolerated this treatment as some people don't handle it well and have to be taken back off of it prior to completion however she has done just fine with it. It may be a week or two before we know whether or not it has been successful. Even if successful it will be even longer before we know if this will be a long term chronic condition for her.

We have tried to be very positive with all of our news while also being accurate and realistic. However we feel that we must let you know now that if this cannot be treated and/or controlled it is the most lethal secondary effect of transplants and she could die from it. She is awake, alert and eating and participating in her walking and other therapies however she is also fighting for her life. We decided that you should know that and understand it as this process goes forward. For now please no visits and no phone calls as she needs all of her strength and focus to be on resting and fighting this off.

We will keep you posted with any news that develops however, as we said, this is day by day and hour by hour and we probably won't know much right away.

Please, please keep her in your prayers.
Thank you all,
Marcia's Family

Marcia's News for December 4th

Hello Everyone!

Well we have some very good news and another challenge to report. First the good news. The results of the most recent bone marrow biopsy test now indicate that the transplant is working. The numbers are going in the right direction to where they need to be and things are "taking"... progressing as they should. That of course is tremendous news!

Unfortunately, as we reported in our last news, Marcia is back in UW Hospital and she has now been diagnosed with HVD which is Host versus Donor disease. For her it has shown up on her skin as a rash and the bigger challenge, in her digestive track which is what has caused her inability to eat or retain much of anything she eats or takes by mouth. What happens is that the white blood cells become over-reactive which leads to inflammation which leads to infection. The treatment is that she takes nothing by mouth for a few days and she must have still more steroids. This means that she will be in the hospital for a couple of weeks while this is treated and of course while she requires everything to be done by port and IV. This does not mean that she is rejecting the transplant! It is a secondary condition that often happens subsequent to it and it is treatable.

The steroids have really knocked her out and she is very sleepy and groggy so visting isn't really a good idea right now. You could try to call, but we're mostly letting her rest and sleep thru as much of this part as she can.

As usual we'll keep you posted as things change and progress. Please keep up all the good thoughts and wishes and prayers.

Marcia's Family

Marcia's News for November 28th

Hello Everyone

Well, we've had another uh-oh on this very challenging road back to good health. Marcia went back into the hospital Friday morning after a very nice family Thanksgiving. Problem was that she has been unable to either eat or "retain" anything she eats for about the last week. Along with that being very bad for her health in general - she lost 10 pounds in that week - whatever is causing it has to be researched and diagnosed and treated and very quickly. Fortunately they didn't wait and called and went down to Fred Hutch right away on Friday morning so the doctors feel that they caught and dealt with it right away. We're not sure what is causing this trouble but we'll let you know as soon as we know. They do say that her "numbers" - blood counts and etc - continue to be OK so this is most likely yet another of those awful "side" issues we've been dealing with all along.

We'll let you know more as soon as we know.

Thanks,
Marcia's Family

Marcia's News for November 25th

Hello Everyone!

Were happy to tell you that Marcia made it back home from the hospital late on Saturday evening and she's been able to stay at home, except of course for the daily trips down to Fred Hutch.

She continues to do well and all the numbers related to the transplant are going in the right direction, although a little slowly. With time the process will sort of push itself forward as her blood and marrow numbers increase and the medications she requires go down. When that happens she will feel much better and the side issues that keep coming up and having to be dealt with that are so time consuming and discouraging will happen less and less.

So, she's at home and doing better. She is "callable" (if you can catch her there and not down at Fred Hutch) but not yet visitable except by the very closest people, but the "open for visits" day should come before too much longer.

We wish you all a happy Thanksgiving!!

Thanks and keep up the good thoughts and wishes and prayers!
Marcia's Family

Marcia's news for November 18th

Hello Everyone:

The wild weather knocked out my Internet last night and into today, but we're back and here is the latest.

We'll start by saying that Marcia is not very happy about it, and that's putting it mildly, but she went back into the UW Hospital yesterday. She has some sort of bacteria that they must identify and treat right away and vigorously. It may be a systemic thing again... those things that as we've mentioned before we all carry but that get a good hold on you when your immune system is wiped out, and/or they are also looking into it coming from her port. If that's the case they will have to fix it... maybe by taking the port out, as it would continue to feed bacteria into her system so long as it's there.

So she is back to hating the food and missing being at home, although the amount of time they were spending away from home and on the freeway and at Fred Hutch - which was lots, lots, lots every day, sometimes twice a day, and at all hours - just tells you how very much she does not want to be in the hospital.

The good news is that all the transplant numbers that matter are going well and going in the right direction. They say she is doing fine on that front so all the rest of these issues are being dealt with so aggressively in order to keep that happening until her immune system builds back up.

Her direct phone number at UW is 206/598-3910 and she is in room 8224. She is determined to get back out as soon as she can and she is absolutely determined to be at home for Thanksgiving!!!

We'll let you know!
Marcia's Family

Marcia's News for Monday November 9th

Hello Everyone:

Sorry for the slightly late notice for this great news but....... MARCIA WENT HOME ON MONDAY!!!!

She was so happy to get home... She was really done with the hospital food and all she wanted was ribs and creamed onions! Tina made her some great homemade soup for her first meal back at home since October 5th.

She is doing very, very well and all of the numbers that really matter are going in the right direction now. This week she (and her chauffeur Pat) will have to be at Fred Hutch for blood checks and treatments every single day and the platlets and red blood cell transfusions continue.

Although the transplant process is working well, there continue to be some "peripheral" issues that must also be monitored and dealt with too, along with everything else. She now has a virus that is common to everyone however when you have no immune system it can get a quick hold on you and become a real problem. This one carries with it the threat of pneumonia. For that she will need infusion therapy twice a day for three weeks and then once a day for another four weeks after that, on top of everything else.

So please keep up the great thoughts and prayers. Hopefully she has the worst behind her, but this is a marathon, not a sprint and she continues to need all of your wonderful good wishes and positive support. She can accept phone calls at home - if you can catch her there - but she cannot have visitors yet as she still has almost no immunities.

Thanks to all of you!!
Marcia's Family

Marcia's News for Monday November 2nd

Hello Everyone:

Marcia continues through the process and the good news is that some white and a few red cells are showing up and attaching into her bone marrow. It is normal that the red cells show up later and more slowly than the whites however this is good news so far. The pleurisy has improved quite a bit and she is requiring less pain medication for it. She is having a lot of trouble eating as nothing tastes good at all and she has been unable to keep down much of what she does eat so that has been a big challenge. Her doctors tell her that when the cells begin taking in numbers she will feel much better. We are all looking forward to that!!

Although her "visitable" status can change very quickly, right now she can have visitors. She is in room 8256 - on the eighth floor of UW hospital. She can also have phone calls, although sometimes she is very groggy so she can't talk for very long. She cannot have fruit or flowers or other kinds of gifts however she still loves the grande size of caramel frappachinos! The visits should not be too long. At this time visitors aren't being required to "suit up" with gowns and etc. so that is a plus for everyone.

We will continue to keep you posted. It just may be that the worst is behind her. Time will tell of course but for right now everything is going as it should.

Thanks and keep up the positive thoughts and prayers,
Marcia's Family