Chemo in costume

Hello, and welcome back. It has been a crazy big week or two. There was the trip to Lake Tahoe for the wedding. A total of sixty four hours from leaving our driveway to returning to it, thirty of which were spent on the road. It's all a bit of a blur of brown desert, endless nursery rhymes and songs to entertain babies in carseats, lots and lots of kneeling in the car, hanging the boobs into carseats so I didn't have to take babies out to nurse them, which led to a bit of a backache by the time we got home. But the wedding was fun, if a bit rushed for us. Daniel made an absolutely adorable ring bearer, completely distracted by the little treasure-chest ring box he delivered down the aisle, stopping often because he just couldn't manage to walk and fiddle with the latch at the same time. He looked (and I think he felt) very handsome in his tux. I was honored to be a bridesmaid in such a gorgeous wedding, and for such a wonderful couple. I met Rochelle mountain biking in Summit County, on a Diva's ride. The Mountain Sports Outlet Divas were a bike team I rode with and later raced for, back in my other life. There was an incident involving clipless pedals and a perfectly placed fall connecting her kneecap with sharp broken granite that required a long walk down the hill back to town and a drive to the ER for stitches, and I offered to walk with her as her knee stiffened up too much to pedal, drove her to the hospital, and then, stitches in place, went out for a late dinner in Frisco. This became the beginning of my friendship with Rochelle. Since then, she moved to Portland, met Don, and they have biked across the United States west-east, backpacked through South America, and just this summer, hiked the Pacific Crest Trail from Mexico to Canada, finishing just a month before their wedding. Their trail-conditioned thighs were up for a night of dancing, and so was Daniel...until he suddenly wasn't. One moment he was spinning on the dance floor, dodging the adult's knees, and the next, he was lying in the middle of it going to sleep while wedding guests tried not to step on him. My little man is such a dancing fool. He has all the rhythm and natural moves that I do, which is to say, none...but that doesn't stop him. He tried to pull me onto the dance floor during the couple's first dance, but I managed to keep him pulled back. But as soon as it ended and everyone went to eat, he took my hands and we twirled with the floor all to ourselves. It was a moment. 

We took his batteries dying as our cue and left before the festivities ended, knowing we had limited time to get back home, and drove east until we were both unable to keep our eyes open anymore, five hours to Elko, NV, where we didnt even have the energy to bring the suitcase into the cheap, stinky motel room, but slept in our wedding clothes. Then ten hours home the next day.  We got home Sunday night, dropped into bed and were able to sleep in for a few hours before we had to go to Denver for Daniel's Erwinia shots Monday.

Tuesday we closed on the house, signing the last papers by 4:30 pm, then came home and began moving the big furniture. By late that night, I had helped move couches and beds up and down stairs while carrying an eighteen pound baby on my back and redirecting a sad, whiny toddler, and I was one incredibly tired mama. And B was a tired daddy. But we had enough stuff to spend the night in the new house, and the next day we got more, and we had all but the kitchen moved by the time my parents showed up Wednesday night. Uncle Leroy and Aunt Mary showed up Thursday night for Haloween festivities, this being the first year Daniel was old enough to realize all the fun that could be had. And then, right on cue, I woke up with a scratchy throat Friday morning and Alex woke up snotty and coughing. 

I kept my potentially diseased self home with definitely diseased Alex and helped my parents and Leroy finish cleaning up the old house and moving the last of the kitchen to the new one while Bobby and Mary took Daniel to Denver for his Erwinia shots. I missed Daniel getting to tour the clinic's "Candyland" extravaganza and see all the other wee oncology patients in their halloween costumes, but Daniel apparently had a ball running around in his "man with the yellow hat" costume and Curious George doll, collecting candy and toys. He reconnected with Kaylee the pink unicorn, whom we know from other stays, for an adorable picture...

...and brought home a bag of treasures. 

The next day, Saturday, we reserved for doing fun kid's stuff. Grandma Sandi and Aunt Mary accompanied The Man with the Yellow Hat, his little brother the monkey, and his mama the giant polyester banana to the Gardens at Spring Creek, Ft. Collins' community botanic gardens, where there were lots of kid-friendly activities for Daniel and pretty little corners with fun plants for adults. We got back home in time for a quick break, then it was back into the costumes for trick or treating, which involved me introducing myself to the new neighbors, then going back to our old neighborhood to visit our old neighbors. 

Unfortunately, that was the last fun clinic day. The next two trips to Denver, with Alex still croupy and sick, we had to scurry into the clinic and hide ourselves in a room before we spread any gems, then stay in that room the entire time we were there. Which is usually about two hours, one spent waiting on the doctor to authorize the shots, then for the shots to show up from the pharmacy (at $32,000, I imagine it's fairly important they not send the shots up until all proper protocal has been observed and they are certain they will, in fact, definitely be able to administer them.) We had one more pair of Erwinia shots today, now we get about a month long Erwinia break. 

Now we are back home, having made it back from Denver in time for speech therapy, a whole lot of eating, a little crying, and now a late nap. Both babies fell asleep in the clinic, which made for an adorable picture of my wee angels...

It was a weird day. Daniel seems more wiped out than I have ever seen him. The lack of life in his eyes and his face right now hurts me. He will occasionally have spurts of energy, but he has fallen asleep multiple times today after asking to nurse. Not that I mind the break. I wish he could just do nothing but sleep until these steroids are behind him. He could wake up happy and not have to spend so much time sad and upset.

Daniel has now had his third and final Doxorubicin infusion, which is a big relief to have behind us. This last one has him looking particularly "chemo-ey". There's really no other way to explain the way his face looks. Pale, exhausted, the deep circles under his eyes not bluish, as they would be if he were healthy but tired, but that unhealthy brownish color. I am not sure at what point he will have a follow up echocardiogram to reassure us the doxo left his heart unscathed, but I am assuming that will happen at some point. Not that it does a bit of good at this point. It isn't like we can change anything by knowing. 

His ANC dropped from 6,500 (higher than a normal person's upper end of 5,000 - it often jumps like that when he is fighting a virus, plus apparently steroids can make it jump up as well) to 950 yesterday. 1,500 is the low end of a normal person's. So we are definitely heading into our upcoming month of neutropenia. Just in time for Thanksgiving. If his counts pass, he will start his next round of chemo November 20, which will really knock them back as well as amp up his nausea and probably cause his hair to fall out again. In the meantime, we get two weeks of no trips to Denver. I can't express how lovely this will be after having made that trip six times in two weeks. Even though it is only a little farther than driving from our house in Kansas to Garden City, which is no big deal, it is a much bigger deal when it is in bumper to bumper stop and go traffic. It's exhausting. We have started taking I-25 all the way to Denver more often because when the traffic is moving, it is faster than E-470 by virtue of being six miles closer with minimal road construction. But the traffic is much heavier and accidents happen much more frequently. There's an app for telling us which way to take when we get to the 470 junction and check to see which way is moving more quickly at that point. Regardless, not driving that road for two weeks sounds amazing.

I haven't said anything to his doctors yet, because I'm not sure of what I'm seeing myself, but it seems like after his last two doses of Erwinia, about an hour after his shots as we are leaving the hospital, he has gotten really shaky. Not feverish, just shaky. It has passed fairly quickly, though. We still have one more two week round of it. I just hope we can get through it without starting to develop a reaction. Time will tell...

In the meantime, the 'roid rage...rages. Daniel's is less rage, although there is definitely some of that, but more sadness with fits of agitation. He feels spectacularly sorry for himself one moment, disolving into loud, mournful sobbing over anything and everything, then he rallies and runs around the house slamming into me, Bobby, Alex and Andy, hitting and pushing. There is hardly any in between. His patience is nonexistant, and this is exagerated by the fact that we don't always understand his requests. 

Some of it may just be that he is almost three years old. He has also started to need to control his environment. For himself, by himself. The new house has a small playhouse in the back yard, which he recognized immediately as his. He took possession, filled it with his toys, and has been practicing ownership with it. He decides who is invited in and who is not even allowed to look in it's direction. I've decided to let him have all the control over his little house he wants and respect his wishes. I ask before visiting him, and allow him to tell me yes or no. Mostly no. The other night Aunt Marci was invited in (or at least her face was, while video chatting with him on my phone) but I was escorted right off the premises and back to the kitchen. I wish I had the option to allow him the same autonomy with his own body. Allowing him complete control of the little house is my compromise for him not being able to choose whether or not to allow strangers to touch him, hurt him, examine his body, invade his space. Having a child who is also a cancer patient completely wrecks the lesson that is so important for protecting a child against potential sexual predators- your body is your own. Nobody can touch your body without your permission. You choose when, where, and by whom you may be touched. I have started asking him for hugs and kisses often, just to give him the chance to say no and to observe me honoring his no. I would love it if other family members did the same when with him. If he says yes, it is an incredibly sweet moment. If he says no, it's just him taking control of something he can control, and it reinforces his body autonomy. It's win-win. Not that this is something I spend a lot of time dwelling on, but unfortunately we live in a time and place where we can not control every creep our kids will come into contact with. It can't hurt to be intentional about it.