-5

Another day down. And yes I do have a literal calendar on the wall that I daily mark off...closer, closer and closer.


Piper completed her sixth radiation sessions yesterday at 6:30pm and none too soon. While we had no problems (thankfully) with the actual radiation it was difficult keeping her happy in this tiny room without snacking. Not impossible but difficult. Today when she woke up Piper was able to have a pancake which was only edible while dipping in syrup and some rice chex dipped in my chobani...I'm sensing a typical two year old trend of dipping and sharing food. I know at some point soon she will not be able to eat and will require an ng tube so at this moment I am contented to have her snack her way through the day. And through my plate.

All of Pipers bloodwork and cultures came back negative so she is no longer in isolation in her room. Of course, this being the transplant unit she is required to wear a mask outside of her room and she is not allowed out of the unit but still it's better to walk laps and play in the playroom than to drive mommy nuts. Major thanks to all the lovelies who have sent Piper little gifts...they are being hidden and are quick to come out when the moods gets grumpy. Huge, huge, huge help to me!

Today Piper began the chemotherapy portion of the work up regime for transplant. She is recently on hour 15 of a 24 hour transfusion of etopisode (vp-16). Tomorrow and Sunday she will have 2 hour infusions of cytoxan and the two days of rest before Transplant day. And she continues to feel well. Still playing and running around. No nausea or vomit. We stay up on her four times a day oral rising out and attempt daily bathing though that's a hot mess with 3 lines coming out of her chest that cannot get wet. Oh yes, her port was reaccesed with no problem and will be deaccessed when it is time to change the dressing on her CVL because the two have tegederm (tape) that is sealed together.

Like I mentioned earlier in this post, thanks for the gifts. Thanks to my parents, my sister, to the Halls and to Christy with Cancer Warriors for the visits...it means a lot to me. And to everyone who is keeping up with this crazy ride we are on, thanks as well. We're going to make it through this and you now have seats to watch the ride. I know it's going to be crazy but I also know we continue to thrash about still seated in Gods hands and will.