Looks like the only time I have to be on the computer happens to coincide with the girls bath. Hopefully they feel like “swimming” until I’m able to get through this post.
So where did I leave off, oh yeah, surgery. We got home and I carefully carried Tuesday in to lie on the couch, or is it lay, while I ran back to the car for Piper. I walked back in to find Tuesday jumping on the couch. And such was the rest of our week. She bounced back beautifully from surgery. In fact, she started really talking. Lots and lots of talking. It was great to be home, I guess, but knowing that we were going back in on Friday left us all a little on edge. Ok, a lot on edge. We all did too much yelling and fighting. Charley and I went out with some dear friends and I did too much drinking. It felt great at the time to cut a little loose but it’s probably not so cool to wake up and wonder if you can push your kid’s chemo back a few hours because of a self induced red wine headache. I didn’t do it. Geeze. I just thought about it. So we made it in on time, and by on time I mean an hour late, to start her pre-hydration. As we were walking in to the hospital we ran in to the Millers who were there for Justin’s chemo. It was great seeing them and a great distraction for the morning. Justin did what I’ve always seen him do during chemo, which is play with about 59 action figures. Such a trooper. This poor dude has been thru the ringer and his family has the greatest attitdue about everything. Charley and Jeff, who happen to know each other thru work, bs’d and answered work emails while Kelly, Justin’s sister, took over all mothering duties with Tuesday. She entertained her for a couple of hours and painted her dog pictures for her hospital room walls. What a cutie! We also met another Neuroblastoma kiddo, Tate who just finished up transplant. His mom looked pretty great for just endouring a month of isolation and all that entails, so there is hope. Stacie and Kennedy, who was sporting some great new hair, were there to offer support to a friend going thru tests and it kind of felt like a weird, twisted little cancer party. The rest of Tuesday’s admit
Interlude: Girls needed out of the tub, Piper decided to pee on the potty which need a celebration and a piece of candy, which apparently was not enough because she got real excited, jumped up for another piece and managed to knock a glass of red wine (are you noticeing a trend?) on to the floor where it explode in to a gazillon pieces and the girls started freaking and Spencer went in to panic mode, because where is Dad? Yeah? Where the hell is he? Oh, returning a dish to the great neighbors who made us dinner and holy shit, I’m beginning to think that fighting cancer isn’t going to be what drives me to drin…
Too late.
The rest of Tuesday’s admit was really uneventful. She did puke, on Charley’s shift, (sorry honey) for the first and only time since starting chemo. We left on Monday afternoon, after sharing some “Go Away Cancer” cake with Tuesday’s nurses, doctor’s and Chaplin and Aunt Winnie, Aoife and Piper. It felt so good to be done with this major phase of treatment.
We also got the pathology back on the tumors from surgery. The tumor near her heart was a calcified nodule. No cells at all. Same with this little spot that they found on her liver during the surgery. Her main tumor and kidney had 10% living cells. For those of you that had Troy J. for your math teacher in middle school as I did, that means that 90% was dead. Regardless, it’s out. The small amount of cells still in her body are now “mature” which is good and have a low MKI which has to do with the mitosis (dividing) of the cells. Again, low = good. We are praying, and you can too, that this final round of chemo wipes out every remaining cell.
SO what’s next? Bone marrow transplant, which is more correctly referred to as a stem cell rescue because she is getting her own, clean stem cells back. She is on a study and will be randomized for one vs two transplants. We are faithful that she will get what she needs. After that is radiation, followed by 6 moths of maintenance and an antibody study which I’ll get in to when we get there. We still have a long ass road ahead, but in the mean time we get to be home for a 6 week break from the hospital. I’d like to personally thank Tuesday for timing her cancer so that we’d be on ‘break’ over Thanksgiving and Christmas.
Tuesday seems to be feeling good. Watching her in the tub makes it all very real. Rubber tubes hanging out of her chest, a 7 inch incision across her much too skinny belly, catheter in her thigh, bed sore scars on her little bald head. Yet there she is, drinking bath water with her twin and laughing, laughing. God I love that girl.
Please keep Spence and Axel in your thoughts and prayers. I think the reality of our new world is starting to take a toll on them.
