Slow and Steady Wins the Race

3/3/2012: 7:20 PM

Our day is just getting started. Davis and I watched a couple of family movies never heard of last night on hulu, and he finally closed his eyes around 2:00 AM. Between staying up late and being pumped full of Benadryl, he didn't get up today until noon.

He has spent the majority of the day in bed. His lovely nurse unhooked his tubing and tower at 6 PM, and he is free to roam about the floor with a mask on until 8 PM.  It is amazing how free one feels when he/she is not lugging a tower full of machines around. We went on a ten-minute walk, and then Davis grew tired. He is back in bed.

Free from tower! Free from tubing! A two-hour break.

Goofing around in the elevator on our ten-minute walk.

His counts today revealed some improvements. His ANC has climbed to 30!  It's not the triple digits that we are needing, but hey, you have to start somewhere. His monocytes dropped from 7 to 2, so chances of seeing a huge jump in ANC are slim, but we have God on our side, so anything is possible.

I weighed some of the positives and negatives of being here nearly a week. I think I will share.

Random photo #1: Davis looking for tape.

On the weekends, everyone clears out and there are very few people here.
Perks: You don't have to wait long for a ride in the elevator.You don't have to wait in long lines in the cafeteria.
Drawbacks: The skywalk bridges from building to building are closed, and you have to walk outside and around a bunch of stuff to get from building to building. Private playroom time is closed. The gift shop, the shopping mecca of this place, closes early.

Our room with a view.
Perks: We are on the B side, so we have a couch. Pick up takes five minutes, and we have a housekeeper. Plus, Davis hasn't been pestered by his little sister.
Drawbacks: Technically, we have a half a room and the window is a bit drafty. Roommates  . . .we have been blessed with some good ones, but it seems as soon as we grow accustomed to one, he leaves and we have to start all over with a new one.

Random Photo #2: Davis just sitting in bed.

Sleep.
Perks: We can sleep whenever we want and for as long as we want.
Drawbacks: There is nonstop traffic in and out of the room. Oh, and roommates don't share our schedule. Plus, we pretty much sleep fully clothed the entire time. Yes, my sleep clothes and my day clothes are mostly the same.

Food.
Perks: We don't have to cook for ourselves, and we have dibs on one-sixteenths of a fridge.
Drawbacks: I can only handle so many grilled cheese sandwiches and french fries. We eat out of sheer boredom.

Disconnect from the world.
Perks: We have no idea what is going on out there in the real world.
Drawbacks: We have no idea what is going on out there in the real world. A couple of days ago, I was walking outside in my flip-flops in beautiful 70 degree sunny weather. Today, I was walking outside in my flip-flops in beautiful 41 degree sunny weather! Totally didn't see that one coming. Lesson learned: never determine your attire on the basis of what it looks like from your window view.

Showers, baths, and the like . . .
Perks: For Davis (and me, I suppose), showering is optional. So is hair combing and teeth brushing.

The shower in the bathroom that I share with all parents
and grandparents on ninth floor (and some from seventh floor too). This
photo gives it justice it doesn't deserve. Reminds me of camping.

Drawbacks: Besides smelling, Davis still needs my help bathing because of his port access and tubing, and that has to be a bit embarrassing for a ten-year-old boy. And I can wait in a line for a long time for a nice, hot shower three floors down, or take my chances in the parent lounge bathroom. I'm not really complaining; the conditions are the best they can be for a hospital.

We want Davis to be good and healthy when we leave, so we don't mind the wait. Another case of the end justifying the means. We pray that his counts recover steady and strong. God bless you all for your positive thoughts and prayers. They mean so much to us.

And although we are in good spirits, there are so many children here who desperately need prayer. There are several children on this floor whose parents, for whatever reason, cannot be with them. I see them sit in their rooms all day and all night with no company. The nurses do a great job compensating for the parental absence, but it's not the same. My heart is breaking for one of Davis' roommate. His father has Shingles, which can be deadly to immuno-compromised children, so he isn't allowed to visit. The roommate tried to call his mom this morning, but she hasn't returned his phone call as far as I know. He can't go home because of his father's Shingles, so he will be here until his father gets better or until his mother agrees that he can stay at her house. The young man doesn't seem to upset about his predicament, but I am. Sad, huh. I just feel so blessed to be able to watch over Davis day and night and keep him company. Please pray for the sick children - the children you have never met - who need to be healed from cancer.

We will keep you posted.