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Update


10/5/2006

Jaymun is continuing to do well. He received another platelet transfusion on Sunday morning. We're waiting for his blood counts to go way up, which can take weeks. So far, he doesn't seem to be developing any mouth sores this time. He's still eating heartily and entertaining everyone with his smiles.

Dave and I had a meeting with the doctors yesterday concerning the breastfeeding. There is a virus, called CMV, which can be transmitted through breastmilk. In a normal baby, there is a less than 1% chance of a baby acquiring the virus due to their healthy immune system taking care of any virus attacking the system. The oncologist had me tested for CMV and the test came back positive, which means at some point during my life, I was exposed to CMV. Actually 6 out of 10 people are CMV positive, so it didn't surprise me that I would be. However, since Jaymun will be going through a bone marrow transplant in a couple of months, he has to take pretty intense immune-suppressing drugs, which do not ward off the CMV virus. If I would continue to nurse him during the transplant and the virus found its way into his body, the results are usually fatal. Long story short, the benefits of my nursing him (which in a normal baby are tremendous) do not outweigh the risks in Jaymun's case. So, we have to begin the sad process of weaning him to formula, which I am pretty sad about.

On the positive side, Dave and I were very encouraged by the fact that so many of the oncologists and doctors from the infectious disease department were willing to sit down with us and answer all our questions. We had done some research regarding the possibility of either freezing or heat-treating the breastmilk to kill off the virus and still be able to feed Jaymun with it. They were more than happy to go over the research and explain the pros and cons of this whole issue. It makes us more comfortable knowing that we did everything we could to examine all areas of the CMV threat. I'm glad we're not in a hospital where the doctors just hand out a decision and we're left to deal with it. They always make sure we understand why things are done and when possible, they include us in the discussion.

We'll see how Mr. Jaymun feels about switching to his new liquid diet. I'm planning on slowly introducing the formula to get him used to the new taste. Neither one of us is going to be very thrilled with this new development, but it really is for his own good. It's just another example of how we're not dealing with "normalcy"--we have to constantly remind ourselves that the leukemia has left us with very little options.

Even though the nursing takes a toll on my own body, I always felt better about being able to do something for Jaymun. It was the one concrete thing I could give him to help boost his whole emotional well-being. I know I have to just let that part of this experience go and remind myself that for a few short months, I was able to provide him with some wonderful bonding. I guess it means we'll just have to snuggle even more now.

Thanks again for those of you who have sent the gas gift cards. Dave keeps commenting on how nice it is to be able to fill up his gas tank and not worry endlessly about the growing cost of driving back and forth. And thank you to all the people who send me cards or little gift bags--it's a wonderful surprise in my day to receive those things!

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