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!
