Happy Thanksgiving, Maddie

Dearest Maddie,
Happy Thanksgiving! I am so thankful for your recovery! Just nine months ago you were very sick, you've been through so much...two big operations, special treatments called radiation, and special medicines called chemotherapy. The most important ingredient in your recovery is prayer. Daddy, Mommy, Josie, Grandpa and I, Grandpa Jim and Grandma Vicky, Aunts, Uncles, cousins, friends, and strangers all over the world fell on our knees begging God to heal you and bless you with a full and uncomplicated recovery.

Maddie, life can be complicated. Sometimes people have short memories and the things that are most important in a crisis falls to the background when life gets back to "normal". This note is a great example, a few months ago, I was writing to you all the time. As you improved, many of us returned to our "normal" routines. As a result, although I meant to write, I didn't, I got involved with other things and writing was something I "meant" to do.

The Home Stretch and The Future

Dearest, precious, Maddie,
You're on the home stretch, your final Chemo treatment is scheduled for August 25th, nine days from today! 9, 8, 7, 6, 5, 4, 3, 2, 1, FINISHED, yeah!! We can't wait! Mommy & Daddy, and Josie, Grandpa, your Aunts, Uncles, Cousins, everyone who loves you, and I, are thrilled this portion of your journey is nearly over! Many family, friends, and strangers around the world are deeply moved by your courageous fight and are storming heaven with prayers. God is hearing and answering each prayer. We are very blessed!

You are a blessing! Did you know you're also a celebrity? You were on TV! Your photos and your story were featured on the TV news. Your Mommy & Daddy's friends planned a big party to raise awareness about Wilms Tumor, that's what caused you to be so sick. You're a celebrity, you should milk it for all it's worth. You probably need an agent, that's a person who plans your public appearances and events. We can talk later about who should be your agent, I have an idea. Now that you're a star, your signature is very valuable, as is everything you touch. You could have your own fashion line!

Birthdays...Birthdays...Birthdays!

Dearest Maddie,
A little more than two weeks ago our country celebrated it's 235th Birthday! Pretty old, huh? Our country was born July 4th, 1776. Every year people all over the country celebrate our nation's birthday with lots of fun stuff - parades, picnics, barbecues, fireworks, and lots more!

Exactly one week later, on July 11th, we celebrated your 1st Birthday! A very BIG event for our family. You've been through an awful lot in this past year Maddie. God created you and has a very special Mission, a plan, that only you can do! That's right, Maddie, only you can do the special work God has in mind for you. Who would think HE would have put you to work so soon? Really, you hadn't even made your journey into this world and you were already stealing hearts. Then, finally, that wonderful day, July 11, 2010 came when you made your graceful debut into this marvelous world.

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!

Walking for a cure as your treatment ends

Dear Madeline,

In a couple of months, we'll be doing something very special in your honor. As it happens, we will also be doing it after your last round of chemo but before your final treatment evaluation. We will among the many participating in the 2011 Baltimore CureSearch Walk on September 10th. The CureSearch Walk celebrates and honors children whose lives have been effected by childhood cancer, while raising funds for lifesaving research. Money raised by CureSearch for Children's Cancer funds the Children's Oncology Group, the world’s largest, cooperative children’s cancer research entity. The Children’s Oncology Group research has turned children’s cancer from a virtually incurable disease 40 years ago to one with an overall cure rate of 78% today. Their efforts (and those of their predecessor groups) are the reason why kids with Wilms' Tumor (like you) have a 90% chance of being cured. Many years ago, the chances of a cure for Wilms' Tumor patients were less than 50%.

We're walking to raise money for research that literally saves lives, so that all children with cancer may have such tremendous chances for not just mere survival, but for long, healthy, active, and fulfilling lives. We're walking with gratitude for the incredible advances that transformed treatment protocols and all but ensured your survival from the start. We're walking with hope that future research will reduce or eliminate entirely the need to subject childhood cancer patients like you to chemotherapy and radiation treatments, research that could mitigate or prevent the horrible near term and long term effects that may arise from those forms of cancer treatments. We're walking to honor you, and the inspirational fight and resilience you've displayed throughout your treatment.  We're walking to celebrate all who have been cured and to honor those who have lost their battle. We're walking for all of the pediatric oncology patients and families that we've befriended throughout your journey.

This is a big deal to us, Madeline. Our lives were forever changed on February 24, 2011 when Mom rushed you to the emergency room. When the words "cancer" and "oncology" were first uttered to us about 15 hours later, we had no idea what the future would hold. I think society in general has been conditioned to think of a cancer as a brush with death, if not a death sentence in itself. The doctors played everything very straight with us but what they told us about your diagnosis - and the cure rate - gave us tremendous hope, rays of light in our darkest moments. We owe these miracle workers a hefty debt of gratitude, and we have been called upon to lend our efforts to support the search for a cure for all kids with cancer. You'll have no memory of our first walk but I hope that these walks make an impression on you in the future, one that you will call to mind when your set about your life's work.

Love,
   Daddy

Great day at clinic

Dear Madeline,

Our prayers were heard and answered yesterday. Your clinic appointment yielded terrific news all the way around. Thank God!

Neutropenia? Gone. Your absolute neutrophil count (ANC) roared back from 10 to its usual place in the 1500s. This meant that you could go ahead and receive your chemotherapy treatments of vincristine and doxorubicin as scheduled. What a relief to know that your infection risk was momentarily minimized, and it was nice to know that we wouldn't be making a trip back to clinic later in the week for a delayed chemo treatment. You'll head back in several days only for a quick check of your ANC to ensure that it doesn't bottom out again before your next treatment.

Your Echocardiogram and EKG results from last week were in. All normal. And why run those tests to begin with? The doxorubicin is known to have adverse impacts on the heart. At the dosages you've been receiving, no one was super-concerned to start with, but the tests are done to be sure you weren't being harmed.

What the day brings

Dear Madeline,

Today, we hold our breath. Your have your clinic appointment today and are supposed to receive  chemotherapy (vincristine and doxorubicin). That will all depend on your counts, which were pretty darned low last week. But we hold our breath not just because of your blood work results. We hold our breath because of the doxorubicin, and because of the way it was administered to you last time, because of the way that it burned you and ended up putting you in the hospital for 10 days last time. We hold our breath because we don't know which line they'll use - your PICC, or your port. If all goes well - and really, why shouldn't it? (maybe don't answer that) - we'll be done with all of that before you had a chance to know what was going on.

I'm quite hopeful that the doctors will want to re-access your port. I know that if they do, they will need to inject a medicine to dissolve all the gunk that has built up in there since it was last accessed. That could take a while. If they are successful in doing so, if they can get your primary central line to give a blood return and to flush, that will mean success. It will also mean that we should be able to remove the PICC from your arm, bandage you up, and get you living life like a baby should - without bathing and clothing restrictions (goodbye, long sleeves!) So, we're hunkering down for a long day and keeping hopes high that it is a productive and otherwise uneventful one. Frankly, any clinic visit that does not result in a hospital stay anymore is a good one. So let's hope for the good!

Love,

   Daddy

A Meaningful Fathers Day

Dear Madeline,

It was only a year ago that Mom and Josie and I anxiously awaited your arrival. Mom was very pregnant with you as we all celebrated Fathers Day together. It was a special day, and I so wished that you had already made your arrival, but that was not to be for another 3 weeks.

I foolishly thought I was starting to get the hang of fatherhood; after all, Josie had already put us through the mill with some early health scares, with not sleeping through the night, with all the drama that can come with 12 hour car rides. Ha! All that was kids stuff compared to the last 13 months.

Perhaps I'd become adept at the mechanics of fatherhood - ceding control of the television, reading the same book over and over until it could be recited by memory, getting home from work in time to have dinner as a family, changing diapers, taking over bath-time duties from time to time, and handling the ever-protracted bedtime rituals - but I still had (and have) a long way to go in mastering the virtues of fatherhood. Immersion learning began the day you were born.

ANC low low low, or Count to 10

Dear Madeline,

You’re amazing. You’re also very vulnerable right now. Mom took you to Hopkins yesterday for an echocardiogram and an EKG to evaluate any impacts of the chemotherapy treatment on your heart, and everything seems to look okay. You also visited the pediatric oncology clinic for blood work to check your counts. The results weren’t exactly optimal.

Your red and white blood cell counts were okay, but your absolute neutrophil count was shockingly low. Your ANC has hovered around the 1500 range throughout your treatment; yesterday, your ANC was 10. In short, this means that your body has very little ability to fight off an infection if you became ill.

Mom and I are on edge. If you fall ill, we’ll need to bring you back to the hospital for immediate evaluation, and likely for another extended stay. Fortunately, you seem to be in good health right now and we’re praying that your good health endures. Stay strong, sweet pea.

Love,

   Daddy

A Hospital Reunion

Dear Madeline,

We seemed to hit a sweet spot for just a little while there, didn’t we?  There were actually a few weeks when everything was going just great.  You starting sitting up and crawling around on your own, and you’re now flashing a nice little set of teeth and a beautiful smile.  Mom and I had waited a long time for a stretch like that.  I guess I got too caught up in enjoying the time with you that I neglected to write to you about it.

We didn’t get to enjoy it for very long, though. On May 10^th, just as you were heading into a nice 2-week break from chemotherapy treatments, we encountered a big problem.  That Tuesday, you were set to receive 2 chemotherapy drugs: the first was the vincristine that you get every time you’re in the clinic for treatment, and the second was the doxorubicin that you get only once every several weeks.  It was during your doxorubicin treatment that we encountered the problem.  The needle that fed the IV line into your port somehow slipped out of place, spilling the doxorubicin into your flesh instead of your central line.  The result was a significant burn, and you sure let everyone in the clinic know about it.  I guess there’s a reason that the “doxo” earned the nickname “Red Devil.”

What a week!

Dearest Maddie,
What a week! Last weekend you and Josie had a sleepover with Grandpa and me, we had fun! We played, cuddled, sang, oh the things we did! You and Josie had a blast playing with the boats, ducks, and other toys in the bathtub!

Tuesday was a rough day, there was a serious mishap at the clinic causing you to be admitted to the hospital last night. This has been very scary, Daddy and Mommy will tell you about this another time.

Wednesday was your 10 month old birthday, how did you get so old? Before you know it we'll be celebrating your 1st Birthday! Start thinking about what you'd like for your birthday. Here's a tip, you've got everyone wrapped around your little pinkie, so think BIG! Most 1 year olds get blocks, books, toys, etc. I peg you as a hi-tech girl, given how you like to play and chew on my iPhone. What about an iPad Touch? Talk with Uncle Joey about this, don't forget to ask him about your pony!

Nice rebound

Dear Madeline,

What an interesting last 10 days. I very much wanted to write to you last week to tell you about how your appointment went and to go over your counts and the like, but that didn't happen. Instead, because your appointment did not go as planned, you were admitted to the hospital overnight for precautionary purposes. I had very much wanted to write to you about that as well, but thought better of it and instead allowed the span of several days to fill the gap and help me see things a little more clearly.

Long story short, your vital signs and your counts all looked fine at your appointment last week but you were, as we were informed, accidentally given too much medicine. There's really not much more you need to know about that, but you did get to see all of your new friends on the nursing staff on the pediatric oncology floor of the hospital again. And they were so happy to see you just being a typical baby (save for the cancer treatment, of course).

Mom and I were pretty nervous about how your appointment this week would go. Since you received 2 different chemotherapy drugs last week and too much of another medicine to go along with it, we were very concerned about your blood cell counts and your absolute neutrophil count and the attending possibility that you would need a blood transfusion, antibiotics, or additional hospitalization (or some, if not all, of these things) in order to get your immune system stabilized. Instead, you wowed us, and I think the doctors too. Everything seemed to be within acceptable ranges, and in some cases, your counts were better than last week.

I can't even begin to describe our relief... my relief. You've certainly been showing yourself to be a miracle baby, fighting through everything the doctors have thrown at you and returning victoriously looking for more, as if to ask if that's all they've got. You're stronger than most, which says quite a lot light of your tender age. To have kept almost all of your hair so far to boot, well I think you're just thumbing your nose at this cancer.

This week's treatment seems to have you feeling poorly, but you usually feel poorly in the 2-3 days after treatment. Still, Mom and I can't say definitively whether it's the treatment that's bringing you down or the 4 teeth that seem primed to burst through your gums any day now. Knowing you, the teeth are probably bugging your more than the chemo. We'll see if I'm right next Tuesday.

Love,
   Daddy

Happy Easter, Maddie!

Dear Maddie,
Jesus Christ is Risen today...Alleluia, Alleluia, Alleluia! These are lyrics to a song Christians all around the world sing today as we celebrate the Resurrection of Jesus, our Savior. Alleluia is a song of praise to God.

You celebrated your first Easter today. It isn't a good idea for you to be in crowds, so you couldn't go to Mass or celebrate in our traditional family Easter celebrations. How we missed you...our hearts broke that you couldn't join our family celebrations, but Grandpa and I were thrilled to visit you this morning!

Here's what you should know about Easter...this is the holiest of all holy days in our Christian tradition. We celebrate the Resurrection of Jesus today! Churches welcome new members during Easter Vigil Masses all around the world and Christians everywhere celebrate and praise the Son of God, Jesus Christ, in whom we have Salvation.

Mashed Potatoes

Dearest Maddie,
We had lots of fun yesterday. You, Josie, Grandpa and I had a delicious dinner, I introduced you to mashed potatoes. Guess what? You loved them! You loved the texture, taste, and most of all the way they felt when you squished them between your fingers.
Smart as you are, you decided to look no further when you needed a napkin, I was right there...my blouse was the perfect napkin! By the way, you thought the squash was okay, but not as appealing as the mashed potatoes. The squash came in handy for dunking your teething biscuit.
YEAH, we'll put mashed potatoes at the top of the list of things you like!
I love you precious, Maddie!

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

Eskimo Kisses...

Dear Maddie,
You are so smart...I taught you Eskimo kisses on Sunday. Yesterday, Grandma Vickie told me you taught her Eskimo kisses! No surprise, after all you are very smart! Before long, you'll teach Eskimo kisses to everyone. Great job, Maddie! I love you, precious!

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.

Fun with Maddie...

Dearest Maddie,
You and I had lots of fun today. We watched the video of the twin baby boys talking with each other. The twins amused you, but you kept your lips zipped, you wouldn't share what they were saying! We did things besides watching the cute twins, we cuddled, sang, played, and danced.

I played Frank Sinatra's "The Way You Look Tonight", you loved it! You were proud of yourself as you sang along. You giggled as we danced; thank you for letting me lead! Each time the song ended you looked longingly for me to replay it. How could I refuse? I played it over and over...you would have been thrilled if I played it all night! We also watched Care Bear vignettes and listened to Disney tunes. Whew...you were exhausted!

You warmed my heart as we snuggled and you closed your eyes. We said prayers before you fell asleep. God, your guardian angel, St. Michael, and all of HIS angels are surrounding you with HIS healing, love, and protection. Tomorrow is your last radiation treatment-yeah! Brilliant rays of God's healing and protection will continue to surround you-think Care Bear Stares! I think the Care Bears got the idea to stand close and create an arch of glowing light around their characters from God's angels. Angels are drenching you in the glow of God's healing grace. See why I think the Care Bears borrowed this idea from the angels? Savor the magnificence of God's healing light and His angelic messengers!

I love you precious, Maddie!

Lovely...Never, Never Change...

Dearest Maddie,
You're smart and spunky, essential qualities for the battle you've been fighting! Your Mommy & Daddy share these qualities, it helped them get you the best medical care in the world and to ask insightful, probing questions.

Maddie, you amaze me! You always muster a smile, often lots of them, and giggles too, even when you feel miserable due to the side effects of your treatment. You wrinkle your nose, amuse me with your silly expressions, and teach me important life lessons like the importance of playing in a bath.

Madeline, you are lovely. An old expression says the eyes are the windows of the soul. Your eyes radiate your depth and spirituality. Your smiles melt me and reveal God's loving and amazing grace. Never, never change Maddie.

Your grace and charming personality immediately popped to mind when I heard this Frank Sinatra classic today.

Get some good sleep tonight, Maddie. I'll see you in the morning.
I love you, precious!

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.

Maddie, what do you think?

Dearest Maddie,
Right now you're busy at Hopkins getting your radiation treatment so you can get all better. God is healing and protecting you everyday, you have nothing to worry about princess...you're going to be just fine!

After you're done charming everyone at Hopkins with your dazzling personality and dancing eyes, will you please watch this video? I don't think any one's asked you this important question...I hope I'm the first!

What do you think these twin boys are saying? Some think they're talking about socks. Others wonder if they're discussing the current crises in Japan and Libya, or debating U.S. domestic and foreign policy. I think they're planning to break into the freezer to get the ice cream! What do you think?
I love you, precious, Maddie!

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.

You'll be fine...

Dearest Maddie,
You're a very beautiful, brave, and engaging baby girl. I’m very proud of you, your Mommy & Daddy, and Josie. All of you have been through the mill! God blessed each of you with HIS grace and compassion which carried each of you through the past 5 weeks. You're going to be fine despite all the scary stuff you've been through so far and all that's ahead!

Did you know that God speaks to us through HIS divine words revealed in the Bible? Well HE does, God tells us 366 times in the Bible not to be afraid. That’s right…a reminder for every day of the year, even leap year!

Is this the new normal?

Dear Madeline,

Do you remember how I told you that, before your diagnosis, you managed to humble your old man on a daily basis? I had delusionally hoped all that would be just a memory. Instead, it looks like the fun will continue into your toddler years.

Yesterday afternoon, you cried seemingly without end. There was a great deal of drama last night trying to get you to go to sleep. Your Mom and Dad, well, we were at our wits ends, and dare I say almost at each others throats blinded by the frustration and our own sleep deprivation. We were finally able to get you to sleep about about 9:45 last night. True to your previous routine, you demanded our attention with agonizing regularity thereafter.

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).

Don't Worry, Be Happy

Dearest Maddie,
Spring sprung two days ago! Daffodils are blooming, tulips are starting to grow, and trees are budding. Pretty soon God’s magnificence will be displayed in an array of gorgeous flowers and trees in full bloom.
Spring isn't the only thing that sprung! Yesterday, you were sprung from Johns Hopkins hospital! Seems like you had a little challenge adjusting to home, don’t worry, these things happen. Home was familiar for 7½ months and suddenly you had to adjust to a hospital. The hospital was scary – lots of tests, 2 big operations, and much more. Doctors and nurses poked, prodded, and interrupted you at all hours. After 1 month in the hospital, you finally were able to go home…YEAH! Josie and Abby were waiting for you. You remembered Josie from her hospital visits, but Abby is a different story…sorry, no furry, four legged visitors were allowed in the hospital. Sometimes it takes a little time to familiarize yourself when you go back home.
Don’t worry, before you know it, you’ll be ruling the roost again!
Always remember, everyone loves you, your guardian angel is always with you and God is healing you.
In the meantime, get some good sleep tonight little princess. I love you!

Of minor milestones and major progress

Dear Madeline,

You had a big afternoon, and I'm sure you didn't even know it! You gave Mom a lot of grief last night about not taking anything from a bottle. She tried just about everything to get you to take that pedialyte, from putting it in a syringe, to spoon-feeding it to you, to dibbling it down to you on a make-shift luge fashioned from your teething fish. Grandma and Grandpa Smith tried to help out by searching all the pharmacies in the area for flavored pedialyte and pedialyte freezer pops. You actually tolerated the spoon-feeding and freezer pops, and we kept up that routine through the morning and much of the afternoon. Until it happened.

Special Angel

Dear Maddie,
Did you know that you are a special angel? Your dazzling eyes and soft, porcelain like skin are angelic and your charismatic personality is engaging. The expressiveness and animation with with which you share your stories entertains and delights me to no end! God blessed you with the gift of expressiveness! No one can mistake the stories you tell with your eyes. Your Great-Grandma Wendelken would say you have "dancing" eyes. She's right, your eyes dance with joy, happiness, and amusement as you share your tales. My heart broke many times these last 3 weeks when the story wasn't happy, but fraught with pain and anguish. Your eyes revealed your strength and courage during these times.
Maddie, Angels are messengers from God. Did you know that? You are my angel, you've delivered messages to me - here are a few...love, warmth, hope, and faith. I've heard these and other messages loud and clear since you were born, but especially in these 3 weeks since you've been a patient at Hopkins!
I love you precious Maddie and your angelic ways!

Pretty, Drained

Dear Madeline,

What a sweet end to a rough week. You've been doing very well after your 2nd surgery! So well that your NG tube was removed a day early, that you were sitting up for most of the day today, smiling, giggling, and... actually behaving for the doctors!?! Even just last night, you were in excruciating pain. So much so that the surgical team ordered up another ultrasound (STAT!!) to find out what was happening. They thought perhaps you were having a relapse of the condition that was just fixed in your 2nd surgery. Turns out it was just a nasty case of gas, and it resolved itself in the way that would make any 9 year old boy laugh with delight.

You looked better today than at any point since before we brought you to the hospital. After that fun little bath today, you also smell better today than at any point since before we brought you to the hospital. Now that your stink is gone, I guess I have to stop blaming that funky smell on you. I had so much fun singing to you and dancing and playing with you. I loved that I knew you were crying because you simply wanted to get out of the crib and hang out in my arms for a while instead of crying out in pain. The doctors also remarked that this is the best they've seen you look and react since you've been around. All fantastic news, which builds up of what's next.

So what is next? Well, tomorrow morning (or tonight if you throw a fit), you start off slow and get to have some pedialyte. I hope you actually take the bottle this time, kiddo.  I know you haven't forgotten how to eat. After a morning build-up, we move you up to formula and baby food, just like old times! But there will be great expectations laid upon you once you start eating.

Good Night Little Miss...

Dear Maddie,
It's a great day for the Irish is a song we Irish sing on and around St. Patrick's Day. Let's review your day today-you got up, played with your toys and my earrings, chewed on my St. Patrick's Day scarf, and successfully passed gas! Passing gas, farting, tooting, are names that describe this body function. To no one's surprise, you were very lady like when you tooted tonight! Tooting is a very BIG step on your road to recovery, great job!!

As it turns out, today was a pretty great day for you! Some will call it the Luck of the Irish, I believe it's another step on your road to what will be a miraculous recovery! Of course, we'll let the Irish take some credit too!

Here's a special Irish Lullaby for you called Too-ra-loo-ra-loo-ral. Before you know it I'll teach you to dance a jig! One day soon I'll tell you all about the Irish dance lessons I took when I was a little girl. In the meantime, enjoy this lullaby and sleep well tonight, princess!

I love you precious, Maddie!

Top O' the Mornin' To You...

Top O' the Mornin' to you, Maddie! Today is your first St. Patrick's Day.

St. Patrick is important to the Irish because he taught them all about God and they converted to Christianity. The Irish celebrate every March 17 in honor of St. Patrick.

There are lots of St. Patrick's Day parades, people wear green, and sing Irish songs. I bet no other baby knows this. Here's another tip...When someone says "Top O'the Mornin' to you." You should say "And the rest of the day to yourself!"

Don't let anyone tell you that you're full of blarney, they're being very silly!

Maddie, you have beautiful Irish eyes so this song is for you.
I love you, precious!

Good news where we can get it

Dear Madeline,

 

Lost in the shuffle of all your surgical activity and recovery was a scrap of good news that I managed to pry out of the oncology team. The genetic analysis of your tumor came out in your favor. The chromosomes they found were the ones that everyone was hoping for which means that, in terms of fighting your cancer, you get to stay put in the "standard risk" category instead of shifting over to the "very high risk" category for the treatment course. The initial treatments are the same, but after that, treatment gets much more aggressive for "very high risk" patients. That's your old man for you, finding little victories where he can.

 

Love,

   Daddy

Angels and Saints...

Dear sweet, sweet, Maddie,

Can you feel the warmth of your Guardian Angel and St. Michael the Archangel surrounding you? St. Michael summoned all of Heaven’s angels to guard you through this awful ordeal. They’ve encased your room in a brilliant heavenly gold shield to protect you. Angels cover every corner, every inch of the walls, ceilings, and floors in your room, and everywhere you travel. They're radiating Christ's healing light directly upon you.

You’ve been through an awful lot and you’ve endured several bumps along the way, but don’t be afraid! You are going to be fine, princess! God is healing you. You will grow up to be a beautiful, strong, lady of faith praising God for HIS healing mercy and grace. You and your Mommy & Daddy are being tested right now. Everyone who is faithful to God has their faith tested, gosh, even Jesus was tested!

Music touches the heart

Dear Madeline,

Music has always touched your mommy's heart (the good music, that is). When I was a little girl, I always enjoyed listening to music with my parents (your grandparents). We would take many drives and trips and hearing Credence Clearwater Revival and Van Morrison are the ones that stick out in my memory. Those memories are one of my favorite and most vivid of my childhood. Although you are a little too young to remember all the music that dad and I play for you, I would like to share with you a song that has really helped us during this difficult time that you have been in the hospital. It is a song called "Hey Hey Hey" by Michael Franti and Spearhead.



I hope that this song touches your heart for many years to come.

Love,

Your Mommy

When you come to a fork in the road, do you take it?

Dear Madeline,

Well, sweet pea, the second run at the non-surgical approach to fixing your intestinal tract yielded no results despite valiant efforts. Consequently, you were made to endure another surgery. I give the surgeons a great deal of credit; they went in laparoscopically first and at least were able to get a camera shot of what they needed to address. What they found surprised them. Scar tissue from your first surgery caused your small and large intestines to fuse together, resulting in the large intestine "swallowing" about 1 ft. of your small intestine. We were all aware that this was a possible complication of the original surgery, but we also knew that the chances of it happening were remote. Baby girl, there is no need to go through life with a punch list of rare feats to accomplish. Rare childhood cancer and remote surgical complications should be enough!

Unfortunately, they were not able to resolve everything without reopening your original incision. Although the non-surgical approach relieved much of the problem, surgery was still needed in order to fully correct everything. The good news is that they did not need much time in the operating room to do the job, and that your intestines were still in good overall health such that more radical measures were not needed. It was a quick open-and-close. There are still some real concerns going forward, though.

You are amazing

After enduring a second surgery yesterday, you are as cool as cucumber on good pain meds in my arms today. I'll get you to crack a smile before the day is done.

Love,
   Daddy

You sure know how to attract a crowd

Dear Madeline,

You've had a hell of run these last 48 hours. So much so that I am once again struggling with where I should begin. With Doctor Obvious in your rear review mirror and the suite of medications to control your nausea and vomiting being administered, the oncology "A-Team" made their rounds this morning after your radiation treatment and expressed a little concern over your upset digestive system. In fact, their concern was great enough that they ordered up some diagnostic X-rays to get a better idea of what was going on. Unfortunately, it turned out to be nothing good.

Later in the day, your results came back, and a member of the surgical team came up to explain what they were seeing - essentially that your large intestine was swallowing up your small intestine. Instead of jumping to a corrective set of actions, the surgical team member thought it best (as did Mom and I) to order a quick ultrasound. We were assured that your condition was not altogether uncommon in kids in your age group, and that certain subgroups (like kids who recently had abdominal surgery) were slightly more at risk for developing the condition. At this point, I left you in the tender care of Mom and I went home to spend the night with your sister and your grandmother. This is apparently when all the fun started happening.

Singing to Sweet Madeline

Dearest Maddie,

I truly am blessed to have you in my life. You are such an amazing little girl, I can't believe the fire and fight that you've exhibited during the past few weeks! There have been some very rough times and you've shown us that you are going to keep on fighting! There also have been some very sweet and tender times. Those are to be cherished always.

After work on Thursday I came to see you and though you were uncomfortable, you and I discovered the coolest game ever!! Peekaboo!! You were in your mom's arms and I stood behind mommy, stooping low and then popping up to find you! The smiles were abundant and so heartwarming! I was so glad that I was able to get those smiles and entertain you for a short while. On Friday, I came to visit you after work again. It had been a BIG day for you, your first dose of chemo and first course of radiation. You were wiped out, and deservedly so. It appeared the only thing that would soothe you was to be in your dad or mom's arms. No one else would do, and who could blame you for feeling that way?!

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. 

Ziggy Piggy!

Dear Madeline,

Girlfriend, you need to start eating! I have been thinking of how we can accomplish this because nothing is working. We have tried everything! The video below is a clip from the best movie EVER - Bill & Ted's Excellent Adventure. You will learn that Keanu Reeves was actually a pretty decent looking guy once upon a time. Anyway, if it takes one of THESE sundaes to get you to start eating, I will find you one of these sundaes. ZIGGY PIGGY!
Love,
Your Mommy

Hakuna Matata

Dear Precious Madeline,
Today was a busy day! First of all, you celebrated your 8 month old birthday, Happy Birthday! Next, you had your 1st dose of Chemotherapy, just hours later you endured Radiation. These therapies are important so you can get better. You see, Maddie, just 2 weeks ago the world's very best doctors at Johns Hopkins Hospital discovered you were very sick. Only 2 weeks ago? It seems like an eternity doesn't it?
Even though you're sick, you're going to be "A OK!", just fine! God is healing you, watching over you, and protecting you, even in these scary times.
I loved kissing your soft hair and rocking you as we cuddled during your naps today. I cherish these times. In a small way, it's almost like I can offer safe harbor-as if I could protect you for just a few minutes from all that's bombarding you. How I wish I could spare you this sickness! Everyone in our family feels the same way.
God chooses strong people to carry heavy loads - boy are you ever strong!! So are your Mommy & Daddy, and Josie.
As you sleep tonight, remember you're in God's hands, so No Worries!!!
When you're older we'll watch the Lion King together, in the meantime, this song's for you, Maddie!
I love you, precious!

[Editor's Note: Video removed because original YouTube poster violated copyright. Sorry everyone.]

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.

Happy birthday, Madeline

Dear Madeline,

It's hard for me to believe that you were born a mere 8 months ago. That time has gone by in a blur. I love you so much, sweet pea, and look forward to celebrating many birthdays and milestones with you.

Love always,
   Daddy

A special note for our readers

Dear friends and family,

By know you know all about Madeline's battle with cancer. This morning our baby girl, who is 8 months old today, began several days of radiation therapy and 28 weeks of chemotherapy to eradicate the cancer from her body. We are facing a long, hard journey, but we feel blessed to be in the expert care of some of the worlds best doctors. Most if not all of you have asked what we need or offered to help with whatever need. Beth and I are just overwhelmed and humbled by this outpouring and want to thank each of you. To say we greatly appreciate this is a significant understatement.

We don't know yet know exactly what we need (this is gradually beginning to come into focus), but we would be so grateful and eager to accept any help you want to offer. As Maddie's treatment schedule develops, we'll have a much clearer idea of what help we need on a day-to-day basis, and we'll communicate that to you as promptly as we can. We know that we'll need to keep a very clean house - it's hard enough to maintain a semi-clean house with two little ones - to help ward off infection as her body endures the effects of chemotherapy, and we know that we'll need to restrict her exposure to crowds in general through the fall, and to sick folks. There may be opportunities to help in those areas. We've already received a number of meals which are presently being stored in our freezer until we can get to them - there's plenty more room in the freezer if you wish to help in that area.

Since many of you have asked about donations, we set up two different ways to facilitate any contributions you wish to make securely over the internet thru PayPal trusted partners. In either instance, you do not need a PayPal account to donate electronically.  If you want to do this the old-fashioned way, please send me a quick note so I can send our mailing address.

Refocusing

Dear Maddie,

Can you believe I haven't seen you in 2 days?! I know, what the heck? Well, I plan to fix that soon! :O) I was so thrilled to be able to visit you during the day on Monday. So, apparently your Aunt Beth was having a brain fart (yes, I know brains don't actually fart, it's just a saying) and forgot to take her medicine on Monday morning and didn't remember until she was at work. Well, I was feeling a little funny and decided to see my patient in the morning and then leave to go home and take my "feel all better candies" (don't you like that better than calling it medicine?) Well, my little mistake meant that I had the rest of the day off, so of course I made a trip to see you! We had a nice time, you told me lots of things and tried to steal my watch! You and your sister, always wanting to take watches! :O)

Well Maddie, today is Ash Wednesday, the beginning of Lent. As I was at Mass this evening, my thoughts and prayers of course turned to you, Mommy, Daddy, and Josie. The priest talked about how Lent is a time to put life in perspective and focus on what really matters. Well sweetie, you have shown us again, just how much love and family really matter. Thanks for bringing our focus back on the important things. I know that you are facing a lengthy journey of treatment beginning this week. You will come out of this whole thing so much stronger, you are such a fighter! I've been saying some very special prayers for you, and will continue to do so every single day, you can bet on it! This wasn't one of the readings at church today, but I was reminded of it recently and it made me think of you:

For I know well the plans I have in mind for you, says the LORD, plans for your welfare, not for woe! plans to give you a future full of hope.

When you call me, when you go to pray to me, I will listen to you.

When you look for me, you will find me. Yes, when you seek me with all your heart,

you will find me with you, says the LORD, and I will change your lot; I will gather you together from all the nations and all the places to which I have banished you, says the LORD, and bring you back to the place from which I have exiled you. - Jeremiah 29:11-14

Miss Maddie, God has big plans for you. This is just a stop along the way. We don't necessarily understand it, but we trust that everything will be just fine and you will be healthy and strong in no time. In the meantime, We pray. We play. We laugh. Sometimes we cry. But most of all, we trust in God. And maybe, just maybe, I'll forget to take my "feel all better candies" again and have to come play hookie with you! I would love that, very much!!

I love you so very, very much!

Love and kisses,
Aunt Beth

Madeline...Tower of Strength

Dearest Maddie,
When I entered your hospital room yesterday you were smiling and enjoying some quiet time with your Mommy & Daddy.

Your smiles, gurgles, babbles, and beauty was a ray of sunshine on a cloudy day. Your angelic smile could illuminate a dark, dank cave. God used your smile to reassure us that HE is in control and you will be fine!

Did you know Madeline means Tower of Strength? Your Mommy & Daddy were inspired to give you this name before you were born. You wasted no time at all. Here you are just a few short months after you entered this world and you're demonstrating that you're really strong!

Did you know you have a patron saint? You do! Her name is Saint Madeline, she lived in the 1800's and did great things. St. Madeline is best known for opening more than 100 schools in 12 countries. The schools were operated by the Society of the Sacred Heart, which she founded. God has already done great things in and through you. HE is preparing you to do even more great things. I can hardly wait to see HIS plan for you!

Maddie, music speaks to me in a profound way. Here's one of my favorites songs. Okay, I have lots of favorites, but this one is very special. It reminds me that we belong to God and HE loves us more than we can imagine. The song will be familiar to you, it's one of the many I've been singing to you in the hospital.

I love you, precious Madeline!

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.

Oh how you are loved...

Dear Maddie,
Did you know how much you are loved? Of course your Mommy & Daddy and Josie love you, so do all of your Grandparents, and Aunts, Uncles, and Cousins!
Did you know that God has used your sickness and recovery to introduce you to people all over the world? He has and guess what? Everyone is falling in love with you, no surprise!
You're drenched in love and prayers from your adoring family and many who never met you.
Did you know God is using you to bring people together? Well, HE is! Because of you, people across the world, in every single continent, join in prayers, love, and words of support, and encouragement for you, Maddie.
Don't be discouraged by the pain and suffering you endured this past weekend. Struggle make us stronger and more appreciative of the blessings in our lives.
God is shining on us with a beautiful, sunny day today. HE'll be shining on your progress today, too.
I love you, precious, Maddie!

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.

Major puke, and then acting like nothing happened

Hi Maddie,

It was really great to see you Saturday night. Aunt Beth and Uncle Bryan were there too, and showed me the medicine you spit on to the walls. I thought your resulting artwork looked awesome.

I know you wanted me to bring Jackson up to the room, but I had to bring him to Federal Hill instead. His adoring public (Aunt Colleen, in particular) wanted to see him. I'm told that Jackson is the mayor of Federal Hill, in case you didn't know this. And as the mayor, Jackson has to keep in touch with his constituents.

Also, I was very impressed by how vigorously you barfed the Tylenol concoction. Before the barfing, you were a bit agitated. But, wow, you really showed me something special with the upchucking. The coolest part was that, as soon as you were done with the barfing, you went right back to chillaxing. Aunt Beth and Uncle Bryan left soon afterwards, so they didn't get to see you being all sauve. I'm sure if you could have said it, you would have said: "Hey, man, that barf is no big deal; I can do it bigger next time." Respect.

Then your dad and Josie came to the room to see you. You sat up and you were bouncing yourself with excitment on your mom's lap when you saw your sister. Josie was very excited to see you too and she brought some balloons over to you. It was very sweet.

Before I sign off, we gotta get something straight. You're parents are already trying to trick you with this pony thing. They're trying to say that I'm going to get you a pony. Don't let them trick you! We talked about this already. And another thing, you've gotta stop fussing with that port. I know it's cool to have a port (and not everyone can have one) and you really want to show it off, but you gotta let it be.

Love,
Uncle Joe

Better than a Hallelujah

Dearest Madeline,

It's odd to me that I didn't see you today! But after short (well, shortish at least) visits every day this week, I figured you could use a break from me, and some time to get some real rest. Plus, to be honest, Aunt Beth has let some things in her home go by the wayside... who needs clean clothes to wear? who needs food to eat? what is that stench, oops full garbage cans! But let me tell you, I would rather spend time with you than taking care of all those mundane chores around home.

I had so much fun yesterday! Uncle Bryan and I took your big sister Josie out for some adventures! We went to the playground and ran around like crazy! Then we went to the mall and met the Cat in the Hat! We then had some lunch at McDonald's and ended our adventure with a trip the "blue store" which I'm sure you already know is Wal-Mart, but took Uncle Bryan and I a few moments to figure out. :) I can't wait until you are big enough to go on adventures with us too!! After our adventures with your big sister, we got to come see you for a little bit! And you did seem to be feeling better than the night before. I even was able to get you to give me that great Maddie smile!! It was so great to see you smiling again!

So, if I didn't come to see you and I didn't have adventures with Josie, what did I do today? Hm, well, I picked up a bridesmaid dress (yes, you'll find out about these several years from now, and yes, they are expensive and worn once), I went to the library, I went grocery shopping, I did some laundry, and I went to Mass. Today's readings and hymns were particularly meaningful for me today Miss Maddie. The responsorial psalm was Psalm 31, about God being "my rock and my fortress." Well, that's exactly what He is dear Maddie! All of us who love you so very much are leaning on God right now. We know that God will bring you through this whole thing and you'll be healthy and happy!

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.

Yesterday, Today, and Tomorrow…

Dearest Maddie,
My heart broke yesterday as tears poured down your cheeks as you writhed in agony. Watching you arch your back in pain, squirming to find a comfortable spot, your crying out is heart wrenching. Yours are real tears, not crocodile tears.

Despite of your pain you were smitten, as usual, by my Miraculous Medal. I brought you your own, it was blessed by Pope Benedict XVI during the Mass he celebrated at Nationals stadium in DC a few years ago. Yes, I know it was the Nationals, not the Orioles, boo hiss! But we’re talking Pope Benedict XVI! We’re thrilled for an audience with him… even if it’s at National’s stadium.

OK, back to you… a few notes about fashion, jewelry, chatting up a storm, and faith…

Today…
Fashion notes…you got a new wardrobe! Yes, you looked very cute in your hospital gown, but to tell the truth, your wardrobe is much more fashionable and flattering! Hopkins should stick to medicine; they don’t know a thing about fashion!

Jewelry notes…in addition to my Miraculous Medal, you admired my Hopkins jewelry-we call it a wrist band. Let me tell you Maddie, obviously Hopkins didn’t ask a jewelry designer for help designing this bracelet…no Pandora, Cartier, Tiffany, or even Monet influence on this bracelet!

Chatty Maddie…you talked up a storm today and made those very cute expressions that I love. You know the ones…you twirl your tongue around your lips and tell a fascinating story. Of course, Miss Maddie, you check out your audience regularly to make sure all are captivated by you. How could we not be captivated?

God created you to accomplish His plan here on Earth. I’ve got to tell you Maddie, your grace and spunk reveals your spirituality which will serve you well as you embark upon this adventure of a lifetime.

Each day I thank God for the blessing you are to me, our family, and our community of fellow Believers. Your story weaves together a brilliant tapestry - bringing out the best in people of all ages worldwide of every race, creed, ethnicity, and profession. God often uses the most vulnerable to teach the most profound lessons. He sure has with you! Don’t be surprised to learn that many who are searching for God find Him through your story. You are a child of God, He loves you even more than I do, boy that’s hard for me to fathom! Thank you for being a vehicle for His healing grace, peace, and love.

Tomorrow will be a better day, as will the days that follow…In every day and every way, our good and faithful God will be with you, precious.

I love you, Miss Maddie!

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?"