How well you've done so far

Dear Madeline,

It's been almost 2 weeks since I last wrote to you. It's not for a lack of wanting. Rather, you've really been ruling the roost lately. Between your teething pain that's been keeping you up all hours of the night and my getting back to work, I really haven't been bringing my "A game."

Last week we marked your 9-month birthday, and as your present to Mom and I you tolerated your chemotherapy remarkably well. We really didn't see the same sort of downside I've come to expect. Maybe the pain of your new teeth pushing down on your gums helped to distract you from how bad you would have otherwise felt after chemo. Still, your smiles and desire to have things your way shone on through. You played on the floor, hung out in your walker and generally remained in a decent mood for most of the week. Except until the sun went down. Then it was a different story entirely.

Changes ahead

Dear Madeline,

Well, that was quite the long day, wasn’t it? I think we managed to arrive at the Johns Hopkins at about 7:30 this morning for your morning radiation treatment and didn’t manage to get home after your pediatric oncology hospital clinic appointment until about 4 this afternoon. In between, though, we did skip out of the hospital and I gave you and Mom the grand tour of Baltimore to pass the time. (I think we managed to pass through the majority of notable places, hot ZIP codes and wastelands alike.)

You haven’t been taking too kindly to these morning radiation appointments and the accompanying restriction on not eating after midnight the night before. The radiation oncology team needs you under anesthesia so you don’t wiggle around or change positions while receiving the radiation. Trust me, it is better this way. That doesn’t mitigate the perverse irony, though, in that the intentional damage to the area where your giant tumor was is triggering your body’s healing response, which in turn requires a great deal of energy (and thus, a great deal of eating to fuel the healing). Your treatment is, in short, making you very hungry and we need to deny you some of your feedings in order to ensure your treatments are as effective as billed.

This really suctions

Dear Madeline,

It's been a full week since you were admitted to Hopkins Hospital   You've had some ups and downs, but I guess that's the way it goes for cancer survivors and I need to learn to expect and accept them both.  Your ups and downs lately seem to center around this darned NG tube.  You did well with it last night and all day today.  Your only major gripe today is that you wanted to be held... a lot.  No one here would refuse to meet that demand. 

You've had another rough couple of hours, though.  As the day wore on and the afternoon began to surrender to the evening, you became vocally agitated.  After giving you a few boosts of your pain meds, we ruled out pain as the reason.  It wasn't too loud or too bright, and you were otherwise cozy in my arms.  Then you kicked that cry in, the one that says "I'm so hungry!! What's a gal got to do to get a meal around here?"

So tired

Dear Madeline,
I can't imagine the discomfort you've been through, and are experiencing now. I'm relieved, though, that you are in the caring hands of an incredible corps of nurses and doctors there at Hopkins. I am realizing how much I am going to have to start leaning on them.  The adrenaline that coursed through my body over the last few days is dissipating and in its place, exhaustion and fatigue are starting to set in.  I'm realizing that Mom and I are really going to need to get good sleep in order to give you the love, care, and attention you need. Its just too bad that this one of the few things Hopkins cannot provide. Bear with us, hun. We'll be doing the best we can.
Love,
   Daddy