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?"

Three Little Birds...

Dear Beautiful Maddie,

Hey there sweetie! I just got home from seeing you tonight. And you showed your fire tonight. You were so pissed off at those doctors, and I don't blame you! Those stinkers wouldn't let you eat, and you were so hungry! Your daddy and I tried to calm you as much as we could, but let's face it when someone is hungry, the solution is to eat!

Now, I used to sing well, but I'm afraid that my singing abilities have deteriorated over the years. So when I tried singing to you, well, it wasn't always a good thing, I guess. First, I tried singing the Grey's Anatomy song. But, even though I'm a Grey's fan too, apparently I don't know the song. I was only able to remember about 10 seconds of it, and was singing it over and over. Well, that just didn't seem to work for you. Then daddy put the Lullaby channel from Pandora on, and guess what came on? The children's version of Bob Marley's Three Little Birds. So I started to sing that song, since I actually know the words and tune. That did seem to help you calm down for a little while. Since you seemed to like that song, I wanted to introduce you to the real version of it, the original Bob Marley version. One day you'll grow to love it more than the kids' version. I promise. Here it is sweetie!



I was thrilled that I was able to hold you again tonight! And was so happy that holding you seemed to help you feel better for a while. I hope you're feeling all better really soon and those stinky docs let you eat as much as you want!!

Love and kisses,
Aunt Beth

In my arms once again

Yesterday morning you were well enough to finally be held in my arms.  It was the most wonderful feeling in the world after not being able to do that in so long.  It always amazes me of how much warmth you bring to my heart especially by holding you and gazing into your eyes.  We do not have to say anything to each other – we know exactly how each other are feeling at that moment....

 

Love,

 

Your Mommy

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.

Holding Hands with Maddie in her Art Gallery

Dearest Maddie,

You have silky soft hands. Holding hands with you yesterday and today made my heart soar as high as the sky! I've spent lots of time in airplanes in the sky, so I know what I'm talking about.

Yep, you're a great hand holder, but you also purse your lips, stick your tongue out, twist and turn, wrinkle your brows, and continue to steal my heart. I loved reaching over to kiss you gently on your forehead wishing you were well enough to cuddle. No worries, we'll be cuddling before long!

Thanks to your cousins Samuel, Anthony, and Stephen you now have a rare, limited edition art gallery. The boys used nature as they painted these rare art gallery pieces. Each portrait reflects the beauty of God's universe-mankind, horticulture, weather phenomenon, and the mystery of sea life. OK, in English that means, a girl with flowers, storm chasers, and fish. The boys worked really hard on these portraits...just for you...to make you smile...hoping their portraits would brighten your day and you'd feel better. Mommy & Daddy decorated your room with their art. You better keep one eye open all the time to ensure no one steals your personal art collection!

I can't wait to see the beautiful portraits that you'll make when you discover water colors. Who knows you might skip water colors and go directly to oils or graphic art.

Your grace and beauty reflect God's love!

I love you, precious Madeline. Can't wait to hold you in my arms!

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.

So tired

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

more waiting

Dear Madeline,

We've made a few adjustments to our expectations since you arrived in the PICU. Or, more plainly, we've done a lot of waiting. It seems that not long after the PICU nurses told us yesterday afternoon that you'd be on you way up back to the oncology wing shortly, they started having difficulty managing your pain. In their wisdom, they decided that they enjoyed your company too much to let you go back upstairs. The only problem is that they forgot to tell Mom and Dad!

Mom and I waited with excitement and anticipation for you to arrive back in your room in oncology. And we waited some more. And then more. And more. Grandma and Granpa arrived hoping to see you. Aunt Beth came by after work to check in on you. No dice. We waited for hours with no news, and naturally our concern grew.

Down to the PICU we marched, looking for answer.  When we learned that you were in such pain, we agreed that they should keep you until your condition improved.  But we were so disappointed, not to mention worrried that your condition was starting to backslide. At least Grandma, Grandpa and Aunt Beth were all able to put on a moonsuit and spend time with you in the PICU.

We woke up early to catch your overnight PICU nurse and your incoming dayshift nurse with hopes that you had a better night and that there were few concerns about moving you back today.  Indeed you did have much better night! You slept for 6 hours consecutively... unheard of in these quarters. They were quite optimistic that you'd be shipped out almost as soon as the pediatricians completed their rounds and PICU could complete the paperwork to move you back to oncology. After a bummer of a night and dreary start to the day, our spirits were greatly lifed. They brought you up at a little before 11. And it was good.

Yet more waiting on the pathology report and official diagnosis, and on being able to hold you in our arms again, but neither should be too far into the future.

We love you, Maddie!

Love,
   Daddy

Are you looking for Dr. McDreamy? ....Seriously?....Seriously?

Dear Madeline,

Seriously? Seriously? Are you wanting to see if there is a real Dr. McSteamy that works at Johns Hopkins Hospital? I know that we have been watching a lot of Grey's Anatomy at home and all, but I didn't think that we needed to go out trying to find him. You have a couple of cute doctors, but unfortunately Dr. McSteamy is a fictional character. Can you imagine if this was Seattle Grace Hospital and all of the steamy drama was happening right under our noses. Scandalous!

Remember, right now you are "MY PERSON" and we are doing everything in our power to get you all better so we can continue our Grey's Anatomy marathon. We got through the first 5 seasons, but we have a lot to catch up on! In the meantime, I will continue to play you the Grey's Anatomy theme song to settle you down.




Love,

Your Mommy

Sharp as Nails...

Dearest Maddie,
Your fingernails are really sharp! Did you know that you scratched your porcelain-like, angelic face on Sunday? Mommy and Aunt Beth came to your rescue and you were back to your gorgeous self in short order!
I hate to be the one to tell you precious Maddie...but the truth is, you need a manicure! Yup, we need to protect your lovely face from getting scratched again. Let's have a girl’s day out with Mommy, Josie, Grandma Vickie, and your Aunts for a manicure. What do you think? We can go to a regular nail salon or a fancy day spa. Which one? I don’t think McDonald’s has a nail salon alongside their playgrounds yet, but they’re probably reading this and will try to steal my idea. Don’t worry, if that happens, we’ll put Uncle Bryan on the case to protect our intellectual property rights.
I love you with all of my heart, princess!