A Picture of Grace and Resilience...

Dearest Maddie,
So it's been a little while since I wrote, not for lack of interest, sometimes life gets complicated. You know a few things about that, don't you, Maddie?!
So, let's catch up...did you know that two days ago was the four month anniversary of your first major surgery? These four months flew by...NOT!! Some days seemed like years. I can't fathom what they were like for you, or your Mommy and Daddy, and Josie! Your big sister, Josie, has been very brave during all that's gone on. Your world, and hers, were toppled!

Maddie, your resilience and determination are inspiring! You are a constant example of God's love and fidelity. Every time I see your radiant smile, reflect upon your horrific journey, or try to comprehend your remarkable progress despite the obstacles encountered, I am rendered speechless. Trust me Maddie, all who know me will attest...speechless is not in my vocabulary!

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.

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. 

The long road

Dear Madeline,

It's been a few days since I've been able to writing to you. Maybe that's been a blessing; it has been a challenge for us to accept some of the developments that the last few days have brought. It is very easy to develop a sort of tunnel vision right now, but I know that these are but bumps in the long road we're travelling.

On Monday, Mom and I found out that your cancer had been re-staged and that you would need some radiation treatment on top of the chemotherapy. At least we also learned that the lead for your had been officially given over to the oncology team from the surgical team. 

On Tuesday, we met with the radiation oncology staff to discuss what treatment would entail and learning that you would need any number of treatments greater than 1 left us feeling a little deflated. Later on that day, we also sat down with oncology to talk about the treatment plan (28 weeks of chemotherapy), the chemotherapy drugs, research and more. We also talked about potential side effects. I don't think I want to dwell on those. Mom and I can talk with you about them one day when you're older. These days, it's enough for us to know that all of this treatment is designed to save your life. Tuesday was a heady day, almost surreal, and I don't ever wish to experience a repeat if that day.

Staged

Dear Madeline,

What a difference a day makes. Compared to Sunday, you were so much happier yesterday after the doctors determined that your port needle was out of place. Ordinarily, it shouldn't cause you much if any discomfort, if out of place... ouch!!!  Your smile was on full display and your personality was making a nice come back as well. You had some visitors today who were also quite pleased to see that: Grandma Zukiewicz and Josie, Grandma Smith, Aunt Kelly and Aunt Beth.

The surgical team returned later in the morning and noted how well you were doing. We were told not to fret the fact that you weren't eating in light of how complex your surgery was. You were also ordered off of the continuous pain medication drip and that we use the bowlus to deliver pain relief as needed instead. Good news! With a little medicinal help, you also left us a nice, um, deposit and there was much rejoicing (probably one of the few times in your lifetime you'll hear that). This gave the oncology team the news they were waiting on so they could get the treatment plan solidified.

A Peak for Every Valley, and Vice-Versa

Dear Madeline,

After such a challenging night last night, you really bounced back today in a major way. The surgical team removed your NG tube during morning rounds. This made you so happy that you threw up. Ok, you were happy after that. You sat up quite a bit today, you were interested in playing with toys, you enjoyed being in my arms, and your long-absent smile returned. It was a great morning!

With no tube going through your nose, there was also no reason to keep your arms and hands restrained. Or so we thought. With nothing left to disturb you in your face, you turned your attention to the infusaport that was implanted in your chest during your surgery on Sunday. And apparently you want that out too since it seems that you keep digging at it. Twice today we have discovered bleeding at the site. Miss Madeline, of all the things to preserve for this hospital stay, this is the most vital.  We cannot let you rip this out, the port is how you will receive the medicine that will ultimately save your life.  We're praying that this be preserved without further damage, which means praying that you leave it alone. I can only imagine what you might do once the chemotherapy drugs start coursing through your system after getting them via the port.

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?"

Working with the Blues and the Greens

Dear Madeline,

It's been an interesting 24 hours for you.  Yesterday brought great news overall and you had your resilience and persistence on full display. Going into last night and the overnight hours, you started paying the price for removing your waste tube. I lost count of how many times you made those sweet nurses change your bed linens after you gave the special effects in The Exorcist a run for their money.  How ironic that pulpy green is the color of both.

In light of your overnight shenanigans, The docs ordered the NG tube reinserted today, and that worked out well for the most part (so did those arm immobilizers!). The bigger issue today was your pain. Since the pain management specialists removed your epidural, which kept your incision area nice and numb, the reality of what you've been through began hitting you pretty hard. All the times you puked your guts out or coughed to clear your chest clearly put your body under additional stress, and your crying told the story. As did all those soiled sheets and blankets, coated IV lines, and fresh dressings.

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

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.