We're about to leave for Chicago so Suzie can visit with her sister, nieces and their families. Before we get underway I thought you'd like to know that Suzie's doctors decided that now was not a good time to take some peripheral blood and see if there is any change in the donor/patient relationship. Instead, they want to add the drug Revlimid to her daily list to see if this medication will help her fight the cancer. Problem is that Blue Cross will not authorize the use of the drug because it is not on the FDA's approved list of drugs that can be used to combat Myelofibrosis. Trick now is for the doctors to find a drug that can help!

We'll keep you posted,

Mike

Although graft versus host continues to torment Suzie she is active, alert, engaged and otherwise behaving s if nothing ever happened. Doctors are taking additional steps to help her manage the cancer, which is still active, so she will soon start taking the drug Revlimid, a derivative of Thalidomide . Additional blood will be drawn on October 30th so doctors can determine how much change has taken place in the donor/recipient relationship. We're praying that the increased graft versus host is an indication that the donor is making a comeback. We should have the results of these tests in late November, early December.

Love to all,

Mike

Just thought that everyone would like to know that Suzie is pretty much holding her own these days. The battles with graft versus host continue, and she's had a couple of minor colds, but we've also been able to help a good friend celebrate her wedding and another good friend celebrate his mother's life. Next big test should take place in early-mid November and we hope to have the results i early December.

Love to all,

Mike

Suzie and I just returned from 10 days in New England, our first pleasure trip of any magnitude in over a year. We visited our daughter and good friends of all ages from our days in Ridgefield, Connecticut and Plymouth, Massachusetts: Kay, Ed, Karen, Kristen, Leo, Cary, Len, Irene, Marabeth, Jen, Jack, Susan, Gerry, Pat, Gary, Sherry, George and Ellen. These people lifted our spirits and the occasion(s) were reminders to us as to just how important they and all of our friends are to us and we are thankful that God has placed all of our friends in our lives.

Our transplant doctor has responded to our key questions:

" Tapering her prednisone/tacro will hopefully rescue at least some of her graft, provided it is done fairly quickly over the next 3-4 weeks. It would be important to repeat the donor/host blood and Jak-2 tests sometime in late October or November, and we could potentially doing so by having a blood sample shipped to us (i.e. she would not necessarily have to come). Hopefully that will show a reversal of the trend.

Her prognosis is unclear at the moment and will ultimately depend on what happens in the next few weeks/months. That said, it is clearly significantly worse than it was just six months ago. Unfortunately, in view of her general condition, a second transplant is not a realistic option (i.e. too risky), but other treatment options can be discussed, and they would most likely be done locally."

This means that we have to let Suzie suffer GVHD to an even greater degree. This is hard because it leaves marks on her skin and it affects her vision and her joints It hit so hard last April that she was unable to sew, or hold cards in her hands. Even eating was a challenge. If the GVHD gets too aggressive, her kidneys and liver are exposed to the degree that it could be life threatening. But doing nothing exposes her to the cancer, which is also life threatening.

Our prayers are that the donor cells make a comeback and that our doctors are able to control the negative aspects of GVHD.

The objective of the stem cell transplant is to replace Suzie’s bone marrow with healthy bone marrow contributed by the donor. This goal will be achieved when the donor’s pattern represents100% of Suzie’s DNA.

When we left Houston last November, the donor’s pattern represented 97% of Suzie’s DNA and, needless to say, we were elated with her progress. But time and all that has happened since we left Houston have affected her negatively and it is beginning to look like the transplant may not work: the donor’s pattern on August 14^th represented 5% of Suzie’s DNA and we continue seeing signs that the cancer is actively present in her body.

The good news is that GVHD remains active, meaning that the donor cells have not given up, and her red blood counts are high enough that at the present time she has no need for transfusions.

At this moment we’re not sure what our status is or what to expect next. Our transplant doctor finds it difficult to offer a prognosis because Myelofibrosis is so rare and because so few people with this disease, especially in Suzie’s age group, have undergone the transplant. We’ve asked what our options are should the transplant fail but he hasn’t had time to respond to this question.

On another note, Suzie just had a most enjoyable weekend: she went boating with Mike on Saturday, attended church services and shared breakfast with good friends Sunday morning, then spent Sunday afternoon at the movies and at dinner with a different group of friends.

The upcoming weekend will be enjoyable because Dave, Kelly and the grandchildren are visiting and the pleasure will continue next week when we travel to Boston to visit Lisa and to Martha’s Vineyard to visit good friends from our days in Plymouth.

God Bless!!!

We visited M D Anderson Cancer Center in Houston on Thursday August 14^th. We learned, if we are interpreting the data we have correctly, that the donor comprised 61% of total DNA in April 2008 versus 97% in November 2007. We are hopeful that this trend has now reversed but will not have the current picture for a few weeks. We will keep you posted! On the other front, Suzie’s WBC and Platelets are on the rise. This is, in part, due to the change in medications used to fight the GVHD which is now affecting Suzie’s skin, joints and vision. The plan now is to continue visiting our local Oncologist every other week and to return to M D Anderson in February 2009.

In the next few weeks we will host Dave and his extended family for the Labor Day weekend, visit with good friends on Martha's Vineyard with Lisa in her new digs in Boston. Lobster anyone? :-)