Working without a net

Dear Madeline,

What a wild few days! So wild I haven't had the time to write to you. After charming all the doctors and nurses over the weekend and carrying that progress through Monday night and into Tuesday morning, we received some incredible news.  During morning rounds on Tuesday, March 22, 2011, the oncology team dealt us a big surprise: they wanted to send you home! Of all the things that hit my ears on Tuesday, these words kept ringing all day long.

Of course, there are no highs without lows anymore, right? The oncology also said that you would receive another dose of chemotherapy... in the hospital, before you would be discharged. At least in this case, they decided it would be best to simply "skip" the 2nd week of the treatment and pick up with the 3rd weeks treatment to "keep you on schedule." So next week you will receive you 4th week's chemotherapy dosage, which includes 2 drugs (your weekly drug and your monthly drug).



In addition, there seemed to be some... inconsistencies... between what various doctors were telling us about your radiation treatments. The radiation oncologists were by later in the day to review. In short, the doctors ultimately found it best to simply reset your treatments.  Mom and I wondered from the beginning if this is what would happen (the practical impact of this is that you get 2 extra doses from the original start of treatment). The lead oncologists we talked to said that it was one of the first things they thought might happen as well. Were Mom and I really in the hospital that long to be so closely aligned with the expert school of medical thought? Probably not, this is probably just a recognition that there are certain pragmatic realities at play when making decisions about a patient's health care. Still, we felt smart if but for a few moments.

Regardless of the ongoing treatment issues, Mom and I were overjoyed to hear the news that you were coming home! The waiting that led up to the moment of discharge, though, seemed interminable. As the nurse began "de-accessing" your port and running through various instructions, it hit me. We would be doing this on our own here. Well, help is only a phone call away, but for the most part, it's just good ol' Mom and Dad.  That thought is a little scary in its own right.

Getting you home was awesome. The fight against rush hour traffic didn't bother me at all. (I don't know why they though sending you home at 5 PM would be a great idea, but we'll take it). It seemed a little trivial all things considered. And when we walked in the door, well, suffice it say that home was rather unfamiliar to you, as was our beloved pooch. You howled for mom for a good hour or so, and I politely left you to alone so I could run out and purchase medical necessities and bring home dinner. (That bottle of laxative is going to be your best friend for a while. Sorry kiddo, gross and embarrassing for you, but also true. Chemo will do some nasty things to you.)

We eventually settled in for the night, and you awoke with great regularity (no pun intended). It was only after you showered your old man at 4 AM did I realize that we did not give you your twice-daily anti-nausea meds (to control another unfortunate side-effect of the chemo). There was no nurse button for us to push to have someone clean this up, and I wouldn't have it any other way.

We all spent most of yesterday in our pajamas, and that was okay. It wasn't a terrible day but not without it's challenges. You cried for a good part of the day, and we spent a good deal of time trying to re-learn what each cry mean - were you in pain, were you feeling gross, were you hungry, tired, or maybe were you just wanting to be held in your daddy's arms? Turns out that all of these answers were on the menu. We waited anxiously for you to poop again, and when you finally did we were as relieved as you were.

Last night was another challenging, but not as difficult as the night before. You received your meds as scheduled, you stayed up extra late with some playtime and giggles, and you finally tuckered out. You woke to be fed and to get more pain medicine, but that was about it. And you waited until about 11:30 today to bestow upon your mother that which you bestowed upon me at 4 AM yesterday. Otherwise, it's been a decent day. We'll take it, and pray for even better days ahead.  We know that they come, along with the tough ones, too.  But you'll always have us to help you though it all.

Love,
   Daddy