Saturday, April 17, 2010

Overdue Update

Good Evening All:

Just writing a quick update while waiting for the Overtime session of the Caps game to begin.

Sorry that it has taken me a while to get an update out to everyone. I went into this past week expecting that I would be going to Hopkins daily as an outpatient. That pretty well held true once I was released on Monday. Tuesday, Wednesday, Thursday I had appointments at Hopkins but a funny think happened on the way to the outpatient clinic:

A part of the treatment process that I always thought was running on autopilot surprised me. The transfusions, particularly the platelet transfusions, had become so old hat, so routine, that I was completely caught off guard to learn that there were still tricks to be employed. Specifically, the crafty Dr. Platelet (the name given to a team of doctors that manage the platelet transfusion process) seems to have effectiveely addressed what had become a fairly disconcerting problem where my platelets were dropping precipitously each day and the transfusions that I was receiving to get me out of bleeding danger were becoming less, and less effective. Apparently all along the donors of the platelets and the results of those transfusions were being tracked. On Tuesday a donor that had been identified as a good platelet match for me was brought in to donate platelets. I received those platelets on Wednesday and got the nice news that the blood draw following that transfusion showed an increase in my platelet levels that I had not seen in quite some time.

Thursday I returned to the clinic and learned that overnight my body had not launched an assault on the platelets as it had in the past. As a result, I practically retained the level of platelets I went home with! And even better, I was told I could skip coming in on Friday.

I returned today and the platelets are still holding steady. My red blood cells are above the threshold for receiving a transfusion (but falling very slowly), and my white blood cells are still almost non-existent (and there is not a sign of the neutrophils that we saw about a week ago). So, I get to skip the trip to Hopkins tomorrow as well!

What does all this mean? Well, most of all it means that I get to take in Nolan's second baseball game of the season. I managed to get to his game Wednesday evening. If I can't coach, at least seeing the kids play is the next best thing. Otherwise, it seems to signal a bit more stability--a very welcome development.

In addition, I have an update on the bone marrow transplant front. First, I'd like to apologize. While the process of receiving chemotherapy and transfusions are well known to me by this time, I am navigating this BMT process for the first time and there are many questions that I have been asked for which I simply don't have a certain answer. Probably the most common question I have received recently relates to the process of finding a donor. We received news on that front during the week and I have spent a bit of time this week trying to put it into context a bit.

During the week I was told that 15 ten-out-of-ten matches had been found. This means that of the 10 alleles that have been found to impact the success of a transplant, 15 registered donors have been found to match me on all 10. Knowing that there is another level of genetic testing to refine the level of match and the process of actually arranging for any one of these strangers to agree to donate their marrow to me, it was not clear whether 15 was a good starting point or woefully inadequate or somewhere in between. Based on a conversation I had with a source I trust implicitly on this and other cancer-related topics, 5 ten-out-of-ten matches would be a good start. As a result I have to feel very good about having match that my doctors, and by extension, I have confidence in.

Well, the Caps have won, and I think I might work on catching up on some sleep.

As always, thanks for reading.

---Russ.

1 comment:

  1. This whole thing about the amount you need in a pool to get the final match sounds very familiar. *cough*resumes*cough* ;)

    Anyhoo, crossing my fingers and wishing you the best on those matches.

    Also, hockey? What is this madness? It's spring!

    - Liz

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