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

No fooling

Dear Madeline,

I'm so happy that the weekend is finally upon us. I'm not sure if the nurses were pulling an April Fools prank on us or not, but they told us that one of the machines - the only they've used for you - was not working properly and that they almost called us to come in for a 6:30 AM treatment instead of an 8:30 AM treatment. Were they kidding? They did indeed have you get your treatment on a different machine, so who knows? That would have been one prank for which we'd not have been so thrilled to be on the receiving end.

You sailed through radiation treatment this morning, the nurse "de-accessed" your port, and when you woke up and finished chugging on that bottle of yours you flashed everyone some huge smiles. I cannot begin to tell you how relieved I am that your radiation treatments are almost at an end.  The clock cannot strike 10 AM on Monday fast enough. When it does, we'll do a victory lap down in "L2" of the Weinberg Building, sprint over to strike that end-of-treatment bell, blow everyone a big, cartoonish kiss, and scram. You've weathered this treatment so well so far, but I'd be lying to you if I said I still wasn't worried about the long-term side effects.

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. 

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?"

in the driver's seat

Dear Madeline,

As I flashed across the web for information on kicking your cancer's sorry tail from here to outer space, I stumbled upon an article about survirors and entreprenuership.

"Those who survive a significant health scare are given the gifts of perspective and enlightenment. Many learn that life can be fleeting, so rather than procrastinate on entrepreneurial dreams, they jump in....'The cancer, in particular, solidified for me that life is really short and to do things that make you happy in your work.... Working for someone else wasn't going to do it anymore.'"

You know, you're only 7 months old but already I recognize so much of this "be your own boss" mentality in you.  I can't wait to learn where you want to steer your life (I know you'll be at the wheel) and to be along to help you on the journey.

Love,
   Daddy

did I mention how much fight you have in you?

Dear Madeline,

You really put on a performance today. Of your own power and out of sheer determination, you decided to pull out the "NG" stomach drain tube - may as well be called the "nas-ty" tube - from your nose.  The doctors had hoped to take it out in a stepwise approach and monitor your condition at each point, but you decided to literally take matters into your own hands.  Mission accomplished.  The doctors decided against reinserting and instead are monitoring you to make sure it doesn't make you worse off.

Quite the impression

Dear Madeline,

Everyone who has been involved in your care here at Hopkins so far has been quite impressed with your progress. Your surgery last night went very well, but it was also unexpectedly intracate.  Shortly after you arrived pediatric intensive care unit after surgery, the PICU staff time and again marveled at your vital signs. They had expected you to experience a more challenging post-op recovery. What a champ you are!

The PICU nurses removed your breathing tube this morning and you are breathing very well on your own. Your chest x-ray is clear and PICU wants you outta there! They are a little concerned though. Despite my warnings, they are finding how fiesty you are and noted your increasingly level of aggitation. What they don't know is whether the aggitation is because you are in pain or because you are just so darn annoyed at being tethered to all of these wires and lines.