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.

The picture of resilience

Dear Madeline,

You, my dear, inspire me. A few days ago you rang the bell down in radiation oncology to signify the end of your radiation treatments.  Before we left that day, the nurses there made sure to keep a central line accessed in your port. A few hours later, you showed us that your victory would not be confined to the morning hours by ripping off the dressing over your port and pulling out the needle from your central line into your port. You "deaccessed" yourself in a declaration of this was to be an all-day victory celebration. (After a phone call to the hospital's on-call pediatric oncologist, we were relieved to hear that no further action was needed on Monday.)

During your clinic appointment (your scheduled follow-up appointment with the oncologists), the doctors were quite impressed. All of your counts - your platelets, your red and white blood cells, your nutrition, your ANCs - were all "normal." Not bad considering you had some low counts prior to last week's double-duty chemo doses. What's more, the docs were very impressed that you deaccessed your port all on your own. They were also inspired by this, and speculated that you may have a grand surgical career in your future.

Your fight and resilience continue to be on display every day, side-by-side with your smile. With the help of some specialty medicines designed to help cancer patients deal with the effects of chemo, you're doing incredibly well. And you've managed to hang on to your hair! It has indeed thinned out just a little bit, and I must admit that I fully expected to be using your bald head to catch my own reflection by now. Keep proving me wrong, Sweet Pea. You are my hero.

Love,
   Daddy

Bell Day

Dear Madeline,

"She's no cheap date." That's what the anesthesiologists said about you after they brought you out from one of your radiation treatments. What they meant was that they needed to give you more anesthesia than they expected in order to keep you asleep during the treatment.

Today you received your final radiation treatment. It's a significant milestone in your recovery. When the nurse carried you back out to us in her arms, our first thought was that something had gone wrong. But when we saw her smiling, and when we saw you awake and alert, my second thought was "I guess those anesthesiologists were right!" The nurse told us that you started waking up almost as soon as the treatment was done. (The radiology nurses need to start unhooking all the wires and lines as soon as their patients start waking up, at least their little patients anyway.) I think you were more eager than even your Mom and I to get out of there and get home.

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.

House of thirty-something flavors? Let's hope not.

Dear Madeline,

Apparently, Mom and I are awful, awful parents. Doctor Obvious swept in to rescue us from our terrible and misguided ways yesterday by informing us that you really should be eating. I want you to live life unjaded by morons like this guy, so I'll spare you what I really thought about that guy and instead say that I was a little frustrated by the remark.

That remark, though, does mirror our concern for you. The doctors won't let you go home until you eat and poop normally. Sweet pea, we want nothing more than to unhook you from all of these tubes and machines and to take you home where you belong. 

Storm Clouds and the Silver Lining

Dear Madeline,

I know not where to begin. Your suffering today was immense and I was unable to do a thing to help you beyond holding you in my arms. I can't say I've ever felt so impotent and so emotionally shredded in my life. We can only guess what could be causing you such agony today. Is it your port site? You've had some bleeding from the incision area around it, but the port itself is fully functioning. Your primary incision seems to be healing nicely and not causing you much grief. Could you be starving? You've refused any form of bottle for about a week, though the use of pieces of medical equipment looking like a bottle has resulted in tears, so maybe you've justly developed a fear of the bottle?

I took a few walks today to try to collect myself, said many prayers and shed more than a few tears for you. I've been struggling to figure out what this all means, wishing I could see what God has intended as a result of your suffering today. I trust that His plan will unfold and be revealed in time. I can say though that I saw a small sign that God has heard my prayers, even if the action plan for answering them is still developing.