Dont' bother me, I'm sleeping.Today's (well I guess yesterday's by now) clinic visit went well. The access was not as bad as I had anticipated, she did really well, very brave. To help her out, the doctors gave us a numbing cream to place on the area where the poke goes about 45 min to an hour beforehand. As with the previous port, stickers (i.e., implements of torture) are generally used to hold things in place. Removing these stickers ends up being the most traumatic part of the procedure. Our oncologist suggested using Glad Wrap "Press N' Seal" instead of a sticker to keep the numbing cream in the right spot for the duration. I bought the JUMBO sized box of "Press N' Seal" at Costco and Bruno, Tony, Gianni, and I played "stickers and lotion" for two days getting her prepared for the big day. I won't share all the fun body parts that can be stuck with Press N' Seal, but you can imagine the fun. Bruno wore his "sticker" to school (I did not even try to explain); Tony, Gianni, and I showed up at clinic all with matching stickers. And even though Tony and I tried the actual numbing cream to make sure it worked, the role playing stopped when the nurse pulled out the needle!
Her counts are low (as to be expected) and she is neutropenic, she will have to go in for transfusions (platelets and RBCs) by next Monday. The results of te LP were negative (that is VERY good). She is not responding so well to the drug they give us to stimulate her white blood cells (G-CSF, the s-h-o-t), but that has a bad news/good news element. The thinking is if she does not respond well (some kids don't), then why bother? Dr. Trish will take a look at how well she does this cycle and assess the usefulness during future cycles. Barring an F&N (please knock on wood as soon as you read this!), the next big milestones are:
- Clinic next Monday and Thursday
- Clinic the following Monday and Thursday
- Our 1st MRI since post-surgery
The picture is actually of us coming home last Saturday, but its so funny, I wanted to share. Note the cookie (untouched) in her right hand.
Love you all - thank you for keeping us in your thoughts and prayers!
