We had a wonderful Thanksgiving! Lisa was with us for the entire week and David and his family were able to join us from Wednesday through Saturday. We were crowded but the visits were good and we're thankful that we had this opportunity to celebrate together. In addition, we learned on the Friday after Thanksgiving that Blue Cross is approving the use of Revlimid for Suzie until November 2009. Given that the transplant failed, this renews our hope that we can manage the disease, not wait for it to run its course.

God Bless, and have an enjoyable Christmas and New Year!

Mike and Suzie

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? :-)

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!

Suzie is stronger but her fight against graft versus host disease, i.e., rejection of the donor's bone marrow, continues. The rash is spreading, there is redness, swelling and pain in her wrists and hands and one of her lymph nodes is enlarged. We will have that biopsied on August 6th and return to Houston in mid-August for a more thorough exam by doctors at M. D Anderson.

On August 24th, 2008 she will celebrate the first anniversary of her transplant, also referred to as her 'second birthday.' She has come a long way in one year and we are thankful to God for his Grace, good medicine and your support.

Mike

Suzie continues gaining strength: she's driven the car and spent two days on the boat over the weekend! Her next goal is to regain enough lung capacity to allow doctors to take her off the oxygen. We see the pulmonary team next week and we'll let you know what they tell us.

Lisa discovered that the settings on the blog would only allow Google users to post comments. We changed the setting to allow anyone who wishes to post a comment to do so. Sorry 'both that!

:-)

Today's visit with Doctor Martin went well! She is stronger, her weight is up to 110 pounds, from 85 pounds in late May, and she appears to be overcoming anemia on her own. (No transfusions!) She will not have her blood drawn again until 7/15 and she will not see Doctor Martin again until 7/28. We return to M D Anderson in mid-August to see how much progress she is making against the cancer. It will be late September before doctors have the results of these tests.

Suzie is stronger and a little less anemic today. No news is GOOD news!

Mike

Tuesday June 17th

As a result of our weekly blood draw yesterday we learned that Suzie is anemic and may need a blood transfusion. We are hopeful that her condition will improve during the week but will seek help in the event she does grow weaker.

The rash on her arms is spreading, due to graft versus host disease, so her doctor at M D Anderson is reintroducing the drug Prograf to her regimine.

On a positive note, she is slowly getting stronger. Her attitude is great, she looks better than she has since last January and she has lots of energy. Your prayrers are working!

:-)

Mike

September 2006 through June 11, 2008

Suzie’s ‘great adventure’ began in September 2006 when we learned she was suffering from cancer. At first we believed that she was suffering from Chronic Myelogenous Leukemia, a disease that is manageable with medications. A month later we learned later that this diagnosis was based on a ‘false positive’ reading for the Philadelphia Chromosone and that she was suffering from Idiopathic Myelofibrosis, a rare cancer that affects two in one million people for which there is no known cure. The disease is so rare, and Suzie's condition was such, that we were referred to M. D. Anderson, the country's leading Cancer Center.In November, doctors at M. D. Anderson confirmed this diagnosis and described the plusses and minuses of the clinical trials that were available to her. Suzie enrolled in a trial designed to test the effectiveness of a derivative of Thalidomide in the fight against this disease. She began treatments in January 2007.In March, Suzie contracted a severe case of pneumonia. This event weakened her so much that she now needed blood transfusions to maintain life. She withdrew from this trial to rest and to pursue other trial options available to her. She chose to undergo a bone marrow/stem cell transplant, her only real chance to eradicate the disease from her system. The procedure was scheduled to take place in June.In May, however, surgeons were forced to remove her spleen. It had absorbed the bulk of the twenty pints of blood Suzie received during April to help combat the cancer and, in the process, grew to be as large as a basketball. Her prognosis was day to day. When she left the hospital she was extremely weak and 40 pounds lighter than six months earlier!The stem cell transplant took place in late August and Suzie's recovery began. Although she suffered a brief bout with Graft Versus Host Disease, aka rejection, she did so well that she left the hospital, and we left Houston, two weeks earlier than anticipated! Doctors in Houston and in Knoxville referred to her as ‘their miracle’.Suzie's recovery continued until late January when bacteria bypassed her suppressed immune system and she contracted a life threatening case of pneumonia. Quick work and strong medications, including steroids, saved her but she was on oxygen and in a weakened state when she returned home. As time progressed, she grew weaker and lost more weight. Her wrists began to swell and turned very red.By mid-April, she was no longer able to use her hands and she now weighed less than 100 pounds. We returned to M. D. Anderson and learned that the host/donor relationship had not changed since last November and that the cancer was under control. We also learned that she was fighting another case of graft versus host disease. Doctors added a heavy dose of steroids to her medication regimen and, by the end of April, we saw a great deal of improvement: she weighed more than 100 pounds, her energy had returned, the swelling and redness in her wrists was gone and she regained the use of her hands.In mid-May Suzie began losing strength in her legs and doctors decided to taper her off the steroids in rapid fashion. By the 23rd, she was unable to get to a standing position without help. Her weight dropped to 85 pounds. On the morning of the 27th she was nearly comatose and, once again, we rushed her to the hospital. Her blood work indicated that her potassium was dangerously low and that her glucose was dangerously high. She was now fighting steroid induced diabetes, a condition we were told could become permanent. The treatments she received worked and Suzie returned home in early June. She is still on oxygen and is undergoing physical therapy to regain the strength she lost in her legs. On the other hand, she is gaining weight, her potassium levels are normal, her glucose has settled into an acceptable range, her energy is returning and her Oncologist is optimistic that the diabetes is a temporary condition that will disappear once the steroids are out of her system.