Lots of news

Today is our 38th anniversary so we spent it visiting MCV and meeting with Dr. McCarty. It was a very informative use of our time. The results of Gennies biopsy were encouraging. She is in a very early stage of MDS. She is very healthy otherwise. She has as we knew secondary MDS. This is a form of the disease that is caused from exposure to chemo and radiation used to cure another cancer. In her case it was breast cancer about fifteen years ago. This type of MDS is very unpredictable and eventually moves on to Leukemia. She also has a few other chromosomal abnormalities. All of this and much more leads us to a complete bone marrow transplant as the only means to a cure.

Dr. McCarty has set the following course of action. In early September Gennie will begin a series of medication call Vidaza (Azacitidine Injection). This is seven shots of medication given one a day. This will be done for a series of 2 cycles. (28 days per cycle). Then she will have another biopsy. Then two more cycles and another biopsy. All during this procedure she will have her blood tested weekly. Once her marrow reaches the levels that the doctors are looking for she will then start her testing. At that time she will undergo another cycle and then the transplant. If after four cycles she is not yet ready they will continue with as many as needed. There are many test that need to be done before transplant. I am not sure what they all are but there are many. Her donor will also need to be tested at that time. The great news today we heard before going to MCV. We got an e-mail from the transplant coordinator and she told us that Gennies brother Spud is a match. There was only a 25 % chance of this and we hit it right.
Even though it was not necessary to have a sibling match it does help and we are very grateful Spud is one. What a blessing. Once to testing is done and everyone is ready Gennie will be admitted to MCV to begin the transplant procedure. At this point they are talking a complete transplant not a "Mini" or "reduced intensity" this will give her the best chance on not having a relapse. This could change if the test indicate that a full transplant would be to risky. At that time they would change and do a reduced intensity transplant. So nothing is set at this time but full is what they are planning on now. This means that sometime around Jan or Feb of 2012 we might start.

Once the transfusion takes place she will be in the hospital for about a month. The doctor said it may not be that long but plan on a month. This entire time she will have round the clock care. I will be there but not every minute. In fact Dr. McCarty wants me there most of the time but warned about burnout for me when Gennie is being so well cared for. He told me I would have lots to do in good time. Once they release her from the hospital we will take up residence somewhere within 30 minutes from the hospital for about 6 months. At first she will have to go the the hospital every day. That will slowly be reduced as they deem fit. If she develops any fever or other conditions they do not like she will immediately be admitted back in the hospital. This is the time that they expect and hope for some GVHD (graft versus host disease). Things that happen when two immune systems fight each other. The are many forms of this and we will have to deal with whatever form it takes with Gennie. Gennie will be on many many medications during this time. These are designed to help the two systems coexist. Also help her deal with all the different drugs. Drugs to help deal with drugs.

During this time and for the next year of more Gennie will not be allowed to cook, clean, wash cloths, be exposed to folks with any kind of illness, eat out, be in large crowds and lots of other things. It is going to be some of the most difficult things we will have to deal with. I know many of you will want to know about visits. She will be able to see people as long as you are healthy. One major thing the doctors mentioned is to have everyone wash their hands when first arriving for a visit. Also no hugging. Sorry huggers, you will just have to hug me.

There is a light at the end of the tunnel. It may take a couple of years but at some point in the future the doctors will check her immune system and she will be declared healthy and MDS free. At that point she will be able to resume her normal lifestyle. She will have a entirely new immune system complete with new baby shots. We look forward to that day.

A high school friend of mine Dave Fooks contact me after my last post and told me the story of his fiance Katie. Katie had MDS and underwent a BMT in Jan. of this year. Hers was done at University of Penn. She is in her eighth month of recovery and doing well. Gennie and I wish Katie the best. Dave and Katie are planning to be married in October. Katie has a ways to go but it sounds as if things are
progressing well. She is MDS free!!! I hope in a year to be saying the same thing of Gennie.

That's all for now. For all my Tidewater friends good luck this weekend with Irene. We may all need it.