11.14.2012

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).
TK

11.05.2012

One more dressing change!

 Becca has been riding her bike a little more often.
We were pretty impressed with the hour of trick-or-treating in the rain.
 Fun at the Kellogg's Gymnastics Tour of Champions with the Drees girls
 Ethan started out as a clown, but transformed into LMFAO!
 Indian princess Lily and her pet cheetah
My girlies at Disney on Ice (check out the hair on Becca!)

So I woke up at 4am today (time change that my body hasn't adjusted to yet) thinking that we only have to do one more dressing change!  If you've read the blog posts in the past, you know that this is one of the most painful experiences, both physically and emotionally, for Becca and the rest of us.  We dread them every week, and though Becca has gotten much better in handling the experience, it's so difficult to not cry myself.

Anyway, next Monday, Becca will have surgery to remove her central line (the external tube that they use to draw labs and give medications) and place her port, which will be under her skin.  The benefit of the port is that her own skin acts as the dressing, rather than a large sticker and biopatch that cannot get wet.  In other words, she'll be able to bathe and swim, just like other kids.  Though this may not seem like a big deal to most of you, it is huge for us.  Becca's whole way of looking at the world and what she can do has been affected by her "tubey" and the dressing that covers it.  All summer long, she was unable to swim, she has avoided activities that might get her dressing wet (even worrying when it is raining) or might pull on her lines, and she only takes a bath once a week just before her dressing change.  Now that we will be moving to labs being drawn once every two weeks or once a month, the benefits of the port outweigh the costs.  Unfortunately, when she does need to have labs drawn, Becca will need to be "poked" with a needle inserted into her port.  In the past, we tried Emla numbing cream, but it didn't really help much.  Hopefully she will again forget the pain during the time in between lab draws...

In addition to the surgery to switch her central line over to a port, Becca will have a bone marrow aspiration done to check on her marrow.  This is the first since getting her bone marrow transplant in July, so please pray with us that all looks good in there.  Her numbers have been great, so we are not expecting anything but good news.

Becca has been feeling terrific lately, and she's been doing so much more and having some stamina.  In the past week or so, she's been to see Disney on Ice and the Kellogg's Tour of Gymnastics Champions (thanks to the Dragonfly Foundation!) at the US Bank Arena, she has eaten at a few restaurants, trick-or-treated for an entire hour in cold and rainy weather (walking the entire time on her own feet), gone to a musical, spent the night and part of a day at Nanna B's farm, ridden her bike up to Denise's house, and visited the public library a couple of times.  Becca is really missing school right now, though, and she keeps asking why it's going to be so long until she can go back.  It is pretty hard to believe that she is still more than five months away from returning to JF Burns, but she has the immunity of a newborn, and there are some nasty things going around.  She will need to get all of her immunizations over again (which really stinks), but it's understandable, seeing as how she has gotten a whole new immune system following the obliteration of her own.

Becca's hair is growing every day (well... we say it grows at night), and she is loving all of the attention when we tell her how beautiful her new hair looks.  It is quite dark, which is a good thing, as she didn't want to grow blonde hair.  About a month ago, before her hair really started growing back, Becca informed me that she wanted to keep shaving her head so that we could give her hair to "nature" and the bunnies and mice would have soft nests.  I told her that this was sweet, and the animals would love that, but that she could change her mind if she wanted to.  Just last week, she mentioned to me that she might want to keep her hair for a little while and wondered  if it was okay.  It was so sweet how she asked with a little bit of a guilty look, but I assured her that "nature" can have my hair when I get it cut, and that I would ask Aunt LeAnne to save some hair so that the animals would still have soft beds.  This seemed to allay her concerns.  Her eyelashes and eyebrows are back, too, but the darkness under her eyes is still there.  The doctors said that it might take up to six months to go away, because she did so much damage to all of the capillaries in and around her eyes in July and August with all of the coughing and vomiting.  The dark eyes still bother her, and she says she's not pretty because of them, but I showed her the picture of herself when she had purple eyes from the bruising and the whites of her eyes were blood red.  Though this seems cruel to do, it has helped her understand how great she really looks right now considering all she has been through.

Even though her eating has slowed down, Becca is drinking a little more, which is important right now.  We don't want her to get dehydrated, and end up on fluids again, especially now that she is getting a port.  Her repertoire of foods is still not vast, but she is opening up a tiny bit to things that she has eaten in the past.  Becca's tastebuds seem to be working again, which she is enjoying.

Okay, I'm out of news (and energy) right now, so I will end this post.  Thanks again for continuing to pray for high counts, no viruses or infections, and smooth surgeries on Monday!  I will try to post some pics sometime this week so that you can see how great Becca looks and what she's been up to these days.
TK
 

11.02.2012

T-shirts anyone?


Lots of people have been asking to buy the awesome Becca's Believers t-shirts that were sold last spring at LES, LPS, LECC, and J.F. Burns.  I contacted the person who made them for us, and she said she can make some more. I also inquired about long sleeve ones (since it's so cold outside), and she is able to make them for $3 more.  If you are interested, here is the flyer:
Feel free to post to FB, pass along to email contacts, or make this available to people you know might wish to order shirts.

Will update the blog and post pics from Halloween this weekend... I promise!
TK