Moving forward

Becca now has a port instead of a central line!  For those of you who don't know the difference (because you weren't forced to be "in the know" as we have been), Becca's central line was a catheter (small tube) that was placed in her chest back in April.  The reason for the c-line was that she was to have lots of blood taken frequently, as well as getting chemo, medications, fluids, and blood products.  The two external lumens of the central line that dangled down her chest on the outside allowed her not to get needle pokes for each of these events, and they could draw as many labs as they needed and give products while Becca was sleeping.  The bad part about the central line was that she could not take baths, and she had to have dressing changes each week (very painful and emotional - see previous posts).

Becca's new port (Port-A-Cath) is a small metal button-like thing with a silicone top.  It was placed under the skin in her chest on Monday, and Dr. Frisher (the surgeon) said the surgery went well.  She had a port the last time around in her ALL treatment, and Becca's really excited to be able to take baths and swim again like other kids.  I love getting her to giggle when I mention that she'll be able to swim naked again!  The week before she was diagnosed with AML back in April, we took a spring break trip and stayed in a house in Florida that had its own private pool.  Becca's favorite bathing suit was her birthday suit, and she was so tickled at being able to swim this way.  I can't wait to see the look on her face when she is able to take her first bath and swim in the next few days...

Some results are in from the labs drawn Monday, as well as the bone marrow aspiration and biopsy done during surgery.  Overall, Becca's counts look good.  There are a couple of numbers that seem a bit out of whack, but nothing alarming that has triggered a call from the hospital.  I looked at the other test results online, and I was a little concerned that the FISH XY test showed only 98.8% of the cells being male (donor cells), and 0.2% being female (host, or Becca's own, cells).  The past two FISH tests have shown 100% male cells, so I was curious as to why the female cells are popping up again.  Here is our care coordinator's response to my email (which makes me feel much better):
No worries from the labs or marrow, the full/final report isn’t out yet or I would have called. Just didn’t want you to think we forgot about you. However, everything that is back so far looks great! The chromosomes are still pending, but Dr. Grimley believes her to be in complete remission and the fact there is no MLL rearrangement is great! Dr. Grimley was not worried that her FISH XY came back at 99.8%. This is typical for a day 100 BM as it is still hypocellular (still recovering cells) and there are other fragments in there that could still be Becca’s. In his words “the bone marrow still doesn’t have a ton of pulp at day 100.” Also this test has  a 3% error rate so anything greater than 97% is usually considered good. So this is great!
I'm still not sure what the MLL rearrangement is, but the little research I did showed that the prognosis is much worse for kids with therapy-related AML when there is MLL rearrangement.  Once we get more results or details on what these mean, I will post an update.

Thanks so much for the continuing prayers... they are surely working!  Becca is feeling great right now, and our "new normal" is shifting a bit more in the positive direction.

Oh, don't forget... if you would like to order a Becca's Believers t-shirt, let me know what sizes you want by Friday so that I can include your shirts in our order!  Long-sleeved shirts are now available :o).

1 comment:

John J. Viall said...

Hey, great to hear this young lady is doing much better. Hope 2013 marks the end of your real worries.