Sam's ANC dropped for the third day to .42 today. This is a relatively small drop but still not what we were hoping to see. Waiting to see the docs today but sounds like there are differing opinions amongst the transplant team as to whether to start a gcsf trial or not. This is a drug that can temporarily boost white cell production. The hope would be it would give her immune system a boost and then she would continue making her own white cells (neutrophils specifically) in her own. The downside is it's not that specific in its ability to target and given the theory behind a lot of idiopathic severe aplastic anemia is that it is an autoimmune disorder, one could potentially also trigger this "sleepy" monster back "on." I am oversimplifying medically but this is how I have conceptually grasped the dilemma. Again, we'll see what the docs day today :)
The good signs are though that Sams platelets are holding and even rising a bit on their own without being transfused for over six days. She could never go more than three to four without signs of internal bleeding before transplant. She is also making more and more retic red cells which are baby red cells indicating that hopefully her red blood cell line will rebound or hold steady soon as well. These are good signs of engraftment despite the dropping ANC so we haven't been given any indication they are fearful "the marrow didn't take" but Sam is just not following the typical path of engraftment. One of our favorite nurses stopped by this morning after seeing in her notes fr home our g tube balloon burst debacle and her dripping ANC, she reminded me that Sam has just been "extra special and unique" this whole way so she just wants to continue to engraft in "her own way too!:)" As long as her own way leads us to a safe ANC level with some working immune system and hopefully no transfusion dependency in a month or so, we don't care in what order we get there:)
Another good sign is she has more energy the last two days. She has had longer periods of active play and is walking more! Yesterday she "sat" on a soft bean bag chair for the first time in over a month because of the fissures. They are still very painful for her but looking a bit better too! Here's a pic of smiley Sam:) I can't wait to have her back on a full time basis! Go Sammi grow!
As usual thanks again for the outpour of support this week. A new sign up for food was organized at Kaedens school with meals coming until the end of the school year! Adorable gifts and toys for both kids and drop offs of magazines, fudge, and chocolate for me at the hospital! Brandon, my mom, and I couldn't say enough about how all these small and large things have helped each and every week in a practical, time -saving way as well as constant morale boosts and smiles:) Seriously feelin the love! Thank you!
I absolutely love this photo. That's the Sam we know and love! With a huge Cheshire grin on her face!
ReplyDeleteBy the way, is everyone getting the email notifications a day late? Mine always come about 24 hours after the post is actually up.