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? :-)

We learned today that the swelling in Suzie's groin was caused by a hernia, which was removed, not by one of her lymph nodes. This is good news because the swelling is not related to the cancer and because she is rid of an issue which could have had more serious consequences in the future.

God id good!!!

The battle versus GVHD continues! Mid-week Suzie's feet turned very red and swelled so much that she had/has blisters on her toes and on the bottoms of her feet. It is difficult for her to walk, at the moment, and impossible for her to put shoes on her feet. We are thankful, thus far, the disease is attacking her joints and is not attacking her organs.

There is a chance that the increased white blood and platelet counts, plus the swelling in her lymph node, are indications that Suzie is also battling the remnants of the cancer. We are hopeful of getting a better fix on this with the biopsy scheduled for this week and while in Houston on the 14th.

A visit over the weekend from Dave, Kelly and the grandkids lifted both our spirits because Chris, Jon and Ali openly express their concerns and love for her. This says a lot about their home life, their dispositions and the parenting they receive. We are proud of all three, especially Chris who is almost a teenager but does not behave like the ones most parents fear.

God Bless!