January 27, 2009

Hello All,

Thanks for checking in on the Highland Park DuBranskys. We take great comfort in knowing that God knows the beginning and the end of this story. At the same time the chapter by chapter experience is very emotional. Today's chapter was an encouraging one, especially in light of all the prayers that have been raised on our behalf.

The City of Hope appointment took all day, partly because it included a blood platelet transfusion. Dr. Chen considers Tom to currently be "undertransfused." So, he has scheduled Tom for transfusions twice a week. He can estimate that Tom will need these as Tom's bone marrow biopsy revealed that Tom's aplastic marrow is producing less than 5% of the amount of blood that it should be producing.

This lead to a clarification that is significant: Aplastic Anemia is a condition and is not mutually exclusive from any particular disease. In other words Tom could have both Aplastic Anemia and Lymphoma. However, in Dr. Chen's opinion this is not necessarily, or even likely, the case in Tom's situation. Dr. Chen confirmed that there are cloned t-cells in Tom's blood tests. However, he indicated that because of Tom's exceptionally low total cell count there is a great likelihood that the cloned cells are not abnormal (i.e. cancer) cells. In order to finalize a ruling out of lymphoma Tom will undergo a full body PET scan (next week) and a repeat of the T-Cell Gene Rearrangement test. The PET scan will search for masses or tumors and the Gene Rearrangement test will allow for a second-opinion analysis of the cells.

Because Tom is likely to require a bone marrow transplant whether or not he has lymphoma and because it is expected to be ruled out Dr. Chen explained the bone marrow process to us in some detail. First, Tom will need to be evaluated to determine that he is a candidate for a bone marrow transplant. All of which, as far as we know, should not be a problem. He will undergo tests of his heart, lungs, etc., as well as a psychosocial assessment, which will determine, primarily, the strength of his social network. This final assessment is required by insurance companies and now the hospital to determine whether the patient has the required system of support to recover from such a rigorous process and procedure.

While lymphoma is being ruled out and Tom is being assessed for candidacy City of Hope will also move forward with evaluating Tom's brother for a bone marrow match. I encouraged Tom to frame this to his brothers in DuBransky terms. First they'll be a competition to establish who will be in the semi finals. This competition will separate brothers who have less than a 6-HLA match from those that have the 6. Upon identifying those that have the 6 they will be reexamined to establish which one(s) have a 10-HLA match. This is the big winner(s) of their very own bone marrow extraction!!

Upon completion of his assessment Tom will undergo chemotherapy to shut down what's left of his immune system and destroy what's left of his bone marrow. The preparation for the transplant, the transplant itself and an acute observation period after the transplant will require a 1-month hospital stay. After that month, only because we live close by, he will be able to go home, as long as he has 24/7 care for an additional three weeks or so. During that time he will be observed, tested, treated for various expected complications and transfused by the hospital twice a week. 100 days after the transplant if it seems to be grafting well he will be able to come into the hospital monthly and at 1-year post-transplant will be considered no longer at risk for rejection. The doctor shared that most transplant patients are not able to work for 1 year. This was difficult for Tom to hear and in the end Tom is still convinced that the doctor doesn't understand how lacking in physical demand is his job. We'll have to take that one day by day.

The transplant process is more brief, but more invasive for the donor. The donor will donate directly from their marrow (as opposed to a new process which prepares the donors marrow to "shed" stem cells into their blood to be harvested through blood draw-a process that is not as effective in cases of Aplastic Anemia as it is in Leukemia). The donor will undergo one day of testing, one day of extraction and perhaps one day of follow-up. The doctor noted that many donors donate on a Friday, feel a bit sore through the weekend and return to work on the following Monday.

From this point forward Tom will return to City of Hope every Tuesday and Friday for transfusions and will see Dr. Chen again on February 10th. At this time Dr. Chen should be able to give us his final opinion on the ruling out of lymphoma and facilitate the completion of all tests to prepare Tom and secure a donor either from among his brothers or from the national/international bone marrow bank. The doctor indicated that Tom has a strong likelihood of undergoing a successful bone marrow transplant (over 80%).

In news imminently significant to Tom, Dr. Chen prescribed an anti-viral medication (which should help with the mouth sores that have been torturing Tom) and a medication to prevent a PCP infection. Both of these will support his health at a time when his immune system is very vulnerable.

Everyone we interacted with at City of Hope was very kind and very competent. In total his intake, lab work, consent to be included in their latest study, a transfusion and doctor's appointment were all completed. We also had a brief discussion with a representative of the Social Work department. Tom has a Social Worker assigned to him, who will complete his psychosocial assessment and support us through navigating the medical, emotional and financial aspects of this process. Finally, while making runs back and forth to the pharmacy there I ran across the resource center and found helpful information about bone marrow transplants, as well as what I feel is the biggest find: A program for children of adult patients. I'm pleased to know that we will receive support in bringing Gabriel along in this process in a way that is best for his well-being and continued development.

We can't thank you enough for your prayers. We believe very much that God is completely sovereign, but that he is also in relationship with us and that he feels deeply the honesty in our hearts. We know that there are more of you praying for us than we can now count and we believe that he hears us and wants the best for us. We don't presume to know what that is, but put all of our faith in Him to draw us closer to His perfect will.

With much love, The Highland Park DuBranskys