HOPE Rising

Happy Birthday, Dr. Seuss

2012-03-03T00:21:00.001-05:00

"Today is gone. Today was fun.
Tomorrow is another one.
Every day, from here to there
funny things are everywhere."

Imagine that my Nicholas was hesitant to even read Green Eggs and Ham this morning....I swear he knows all my tricks to get him to try a new food! As we were beating up the green scrambled eggs, Nicholas offered the interest of green french toast - whoohoot!

We enjoyed a walk around the "big hill block" this morning and ended the day with the boys somehow conniving this safety line repair/rescue man set up.

You just never know what to expect between William's dare-devil side matched with Nicholas' infinite creative play....

My favorite part was how Nicholas was sure to protect William's pump pack by hanging it on a cupboard knob.

Photo A Day #2 - Water

2012-03-02T23:59:00.000-05:00

Last week, we welcomed new pets - the perfect type for a family like ours!

The boys have been working on naming each underwater creature. So far, we have Crabby Crab, Sunshine, Snail ("just like Snail on Franklin!" according to Nicholas) and Deep Red.

We're still working on encouraging William to keep his sticky paws out of the water...busted, William

Picture A Day Challenge #1

2012-03-02T01:02:00.002-05:00

I've longed for a way to get back into blogging....to find the joy I once had in snapping pictures of my boys, not stress over the lighting issues of our new home and the never-ending mess that will surely be in the background of every picture. Coming across the Picture-a-Day March Challenge will hopefully be the encouragement I need right about now to rejuvenate my passion and spirits.

So, without further ado, today's challenge topic couldn't be more perfect....

"Something that makes you happy"

William was recently hospitalized on February 25th (his two-year anniversary of TPN dependency) through the 28th. Nicholas was absolutely crushed when I told him William had to go to the hospital that Saturday morning, as was I. The urgency of William going to the hospital literally comes out of the blue, no warning....and we are all left to just deal. For a 5-year-old who has been tragically affected just as much as William and I over the past 2+ years of the illness roller coaster, this is a lot to handle.

After begging to come with William and I, crying unconsolably in the fetal position of our play tent that had just been assembled in the family room that morning, repeating over and over again that he just doesn't like being away from Mommy.... And then there was the best 5-year-old's attempt to pursuade me that he will help me take care of William at the hospital. Nicholas eventually calmed down after many attempts by all the adults to redirect his attention (he was thankfully consumed with making a combine harvester out of TPN delivery boxes with Grammy, pictures to soon come).

The next day, one excited Nicholas beamed through William's hospital room to hand-deliver a special get-well card he made for his little brother. He exclaimed, "I made it especially for you, it's me and you holding hands, William!"

These two brothers have an amazing connection between them. Nicholas can interpret William's language the best of anyone - they almost remind me of the special connection twins have. Nicholas is always William's best medicine and Nicholas just adores and protects his brother in every way. Their relationship brings me inspiration...and hope in the reality that authentic and enduring relationships really can exist.

"Welcome to Tim Hortons! Can I take your order?"

2011-08-10T23:26:00.002-04:00

August 9, 2011

With so much going on, the little moments of this day gave me that quiet whisper that things will be okay for us.

Nicholas is constantly coming up with hysterical play schemes. With so much whirling lately between William's needs and all those things we shall refer to as "life management issues," Nicholas' need for complex, Mommy-help required play can be just another thing to attempt to juggle in the mix. Of course his play includes complex directives often for me to tape random toys together in an effort to make a greater Nicholas-imagined device or him snatching items from the recycling bin only to convenience me that he can use the items RIGHT NOW instead of it being recycled into something different. I have to admit though, when he instructed me to go behind the breakfast bar and then said, "Welcome to Tim Hortons! Can I take your order now?" I got in my much-needed, well-overdue laugh that cleansed this Momma's spirit.

With headphones on, a nice selection of small, medium and large cups and a variety of Keurig coffee selections, Nicholas was "Joan, the owner of the newest Tim Horton's store across the street from William's cancer hospital in New Nornk City!"

(for those that don't know the significance, Joan & Dave own our local Tim Horton's in Cicero and used to own the store at Golisano Children's Hospital. They have become dear friends and are constantly extending their thoughtfulness with complimentary coffees and Tim Bits for us. And Nicholas gets a little tongue tied with saying New York....its more of a New Nornk).

My little man even corrected my coffee order when he said, "No Mommy, you always get extra cream and two Splenda!"

Of course, once his Tim Horton's store was getting really busy, he hired "Pop" to help man the drive-thru orders.

William was thoroughly amused with the whole production too!

The Climber Strikes Again...

2011-07-17T23:10:00.000-04:00

This boy has no fear....he runs, he climbs, he has been caught many times putting a step stool on the couch to attempt some sort of death defying act...and he insists on doing things "me" (as in me do.) This day, William got himself into Nicholas' chair for breakfast. He had pulled out the chair, climbed in as if climbing a ladder, then yelled to Nicholas and I in the kitchen with a grunty "ME!"

Last Day of Park Hill Preschool

2011-07-17T22:42:00.000-04:00

June 21

Thanks to Nicholas' "best friend" Diamond at Park Hill Preschool,we dealt with a minor reality breakdown when Nicholas confronted me with the question, "Mommy, why did Diamond say I'm stupid and not going to kindergarten next year?" So, after a long discussion, we eventually had an excited Nicholas who will attend "summer camp at Main Street School" and who will start "Kindergarten Prep" in the fall....(phew, crisis diverted!)

Poppie joined us for the afternoon of Nicholas' last day at Park Hill Preschool. Nicholas was so proud of himself getting off the bus that day. He turned to his bus driver on the last step and said, "Bye Ted. I'll miss you! Drive safely!"

Poppie brought us all out for a special ice cream, just like my Papa used to do on our last day of school. Nicholas chose the ice cream stand, telling Poppie, "You will love Big Dip because they have a giant chocolate and vanilla twist on top of the building and that's your favorite!"

Poppie and our little Graduate

There's some pearly whites!

2011-07-14T23:07:00.000-04:00

This boy may have every single specialists under the sun but I'll tell you one thing, he doesn't need a dentist! He loves to brush his teeth....

or shall I specify he loves to eat toothpaste!

Workin it from every angle ~ he does everything to keep his pearly whites looking perfect.

"More?"

Perhaps we should be asking how much toothpaste is too much, but I have a feeling someone won't like the answer.

Oh, and don't ask me why he was wearing his sunglasses while in the morning room. William basically runs his own show around here, now that he's two, you know.

Soccer League: Revisited with Success!

2011-07-01T23:34:00.001-04:00

June 30th

Not to bring up a bad subject, but lets face it, last spring, we had a couple really unsuccessful (nearly traumatic) attempts at sports for Nicholas. Mini Shooters was rather painful for Nicholas and Mommy....and I can't even begin to think about gymnastics (I'm still trying to erase that from permanent memory). When Nicholas out-of-the-blue told me he wanted to play soccer again I admittedly took a long pause.

A really long pause.

Really? Where is this coming from? I didn't want to seem unsupportive but certainly had some concern. A couple weeks ago, we ended his YMCA Gym & Swim classes with a belly flop....no, not into the pool, but with a whinny, glued-to-my leg, whimpering, mumbling 4 year-old on the sidelines as his group practiced their jumps into the deep end.

After a long, deep, cleansing breathe for myself, Nicholas and I discussed the responsibilities of signing up for a sport. I explained that his team would be depending on him to go to all practices and always put forth his best effort. There's no whining on the field...and Mommy can't be out there with him. He very agreeably assured me he "really, really, really wants to play soccer!"

Tonight was his first practice....and I couldn't have been more proud of him!

He was out there with all the other kids. He followed directions, tried his best with each activity and even occasionally giggled with TJ while waiting in line.

He made all the parents on the sideline laugh when Coach Maggie said, "We're going to play a game to get to know everyone's name." Nicholas assertively responded, "Well, I already know my name!"

We only had one minor meltdown when another boy insisted on keeping the only green ball. Nicholas got really upset, since green is his favorite color and he had already used it for most of the practice. With a little encouragement....and a peer who eventually gave up the ball I think just to make Nicholas stop complaining about it....Soccer 2011 was a success!

And the whole experience even ended with a green popsicle from coach!

Once in the car, Nicholas said, "I just love soccer! I can't wait to come again tomorrow!"

Well, here's hoping his enthusiasm will last until next Thursday...

We have one more week of "practice" until the games start. Each player is guaranteed to play at least half each game (....gulp)

Cotton Candy with Sprinkles, Please!

2011-07-01T23:08:00.001-04:00

June 15th

Nicholas and Mommy had a memorable morning together. After and speech eval and touring Main Street School where he'll attend for a summer program, Nicholas convincingly said, "Ya know Mommy, I think we should go get an ice cream at Big Dip since its really close to my summer camp school."

How could I resist that reasoning...

Up, up and away go the balloons!

2011-06-29T23:27:00.000-04:00

After two years of attempting to watch the Jamesville Balloon Fest from afar, we finally, finally saw balloons! We did an early bath night, got all settled in jammies and brought a picnic dinner to the east side of the lake. All through dinner, the sky was empty. Nicholas was incredibly bummed, since the weather seemed iffy all evening. He scanned that skyline for any potential sign of a hot air balloon like it was his assignment!

After two years of repeatedly reading Nicholas' favorite book about Curious George going in a hot air balloon, William spotted his first balloon.

Nicholas was thoroughly impressed with the whole idea of people going in balloons. Some of them even went right over our car and we could hear the burner.

Hopefully next year, we'll have the guts to tackle the festival and see the action close up. I know the boys would love it.

Just Like Brother

2011-06-29T22:07:00.000-04:00

June 16th

Every now and then, there's a few moments of quiet in the house. This afternoon, Nicholas came across some old Christmas toy flyers and searched for items for his birthday wish list (yes, he knows the date of his birthday, knows that its after summer and even after Halloween....but between you and I, he has no clue what that all means as far as the passage of time).

It was so cute to hear him talking to himself about the toys....what he liked about each item, questions he'd mumble to himself like, "I wonder if that needs batteries? Is that a remote?"

William looked on for a while only to dash over to my pile of magazines and grab his own reading material.

He plopped himself in the chair and babbled away to a upside down magazine.

Construction Site Detour

2011-06-29T21:39:00.000-04:00

June 10th

On our weekly trip to Target's Pharmacy, we passed a foundation being poured in the neighborhood. Nicholas screeched in excitement, "Mommy, stop the car! I HAVE to check this out!" Needless to say, we ended up staying for an hour and 20 minutes...

Nicholas is totally into all the construction vehicles... their proper names, knowing all about their functions and is desperately trying to figure out why they come in so many different colors. (I think he suspects there's some sort of secret code that's hidden within the paint schemes.)

Loving everything his brother is interested in, William was game for the adventure too!

Nicholas begged to take over the camera, after accusing me I wasn't taking good pictures of the cement mixer trucks. He's becoming quite the photog...

After numerous persuasions as to why the boys needed to be out of their carseats, I gave in...

and had one happy co-pilot!

The "Haap Buth!" Performance

2011-06-16T22:36:00.000-04:00

June 12th

As William's birthday extravaganza continues on three weeks past his special day, his singing skills to himself are only getting more adorable with each repetition. This morning, he requested a cupcake for breakfast...but before diving in to the goodness, a repeat performance of his "Haap Buth" (happy birthday) was in order.

Haap buth daaaay

....to me.

Haap buth to me...

"Hmm hmm...buthhh to

ME!!!

"Haap buth to me. YEAH!!!"

Traffic Jam

2011-06-16T21:56:00.002-04:00

June 16th

In the middle of a chaotic day filled with medical stress and appointments for William, Nicholas quietly played with his vehicles. I caught him categorizing each vehicle by purpose, as he was sorting out a neat line of construction site vehicles he "needed for his latest project job on the job site."

As I was late to rush William off to the doctor, capturing this moment of Nicholas just being a carefree kid truly made my day.

"Happy Birthday dear Grammmmy...."

2011-06-16T21:38:00.000-04:00

June 15th

We had a beautiful spring evening to celebrate Grammy's 55th birthday. We had a picnic dinner at a favorite park along the Seneca River. Nicholas and Gram explored around the river's edge...

with Nicholas tossing in any natural treasures along the way.

William has been in Poppie-withdrawal as Poppie continues his intense knee replacement rehab. Little William was in heaven as Poppie pushed him timelessly on the swing...

and was always there to met him at the bottom of the playground equipment.

We have one excited boy awaiting boating season!

Our highlight of the night was clearly singing time. William and Nicholas belted out their unique version of "Happy Birthday"...topped with their big blows.

Of course, we had to repeat the process one more time, since Mommy forgot the other number five candle.

Happy birthday to our very special, most loving Grammy! You mean so very much to us all!

Garlic Toast Master

2011-06-16T21:05:00.000-04:00

June 14th

I was so proud of Nicholas. He loves Mommy's homemade garlic toast and was pumped to learn how to prepare it. He cut his own butter pad, melted it in the microwave, added the garlic, spread the mixture on the bread and even added some "chopped grass" (also known as parsley). Of course, he stood in front of the toaster oven with his hands over his ears for the entire 3 minutes worrying about the "ding" at the end....

but boy was he proud of himself!

~ my future toaster chef ~

What faces!

2011-06-07T22:41:00.000-04:00

Nicholas' smerk

William's pout

Planting Seeds

2011-06-07T22:35:00.000-04:00

April 28th

It's amazing how significant pictures can bring back memories of the captured moments. When I initially looked back at these pictures, I immediately recalled that day. I had shared with Nicholas that we were planting our seeds that afternoon when he first got home from school. A couple rough hours later, no nap from the little tike...and that plan had been deleted in my mind....but not Nicholas'. He had been looking forward to planting our three packets of tiny seeds ever since we bought them the week before.

The minutes leading up to these pictures involved two crying boys and a mommy questioning her own sanity for even considering bringing a bag of potting soil indoors (knowing we'd be back to tears if we went outside again where the problems initially started). Seeing how excited the little ones were for the activity, I talked myself into keeping it neat....

As it turned out, the boys thoroughly enjoyed themselves.

William seemed to understand way more than I would have ever expected from a 23-month old. He was particularly careful scooping the dirt and knew exactly when his container was filled to the top.

A couple loving sprinkles from Nicholas to make our beans grow with love...

Easy does it, William.

Let's just say we planted plenty of seeds!

Much-needed bathes followed as well as a half hour of an unexpected television time while Mommy cleaned up the HUGE mess. This situation reminded me that sometimes, children reinvent your day for you.

Nicholas: Game Inventor

2011-06-07T22:02:00.000-04:00

May 5th

After making muffins one day, Nicholas disappeared with my remaining muffin liners. A few minutes later, he returned looking for William and I to come play his new game - "Easter Egg Mix-Up Colors." He explained you have to dip your "egg" (ball) in each color cup and then find the right spot to match it based on the sound it makes or if you cracked it.

Confused, are you?

Come on.....just another complex idea from the mind of my little genius. Someday, I'm sure he will discover or invent something we all needed, but just didn't realize it....

Frozen Treats & Crazy Shades

2011-06-02T22:43:00.000-04:00

May 20, 2011

Woohoo!

Our first frozen treats enjoyed outside for the season!

For about two days, William enjoyed frozen yogurt.

Unfortunately, the fascination ended as randomly as it started.

Warning: this is just the beginning of pictures of the Relyea boys in ridiculously silly shades.

Don't say I didn't warn you.

This afternoon was the first time William was on a big boy swing all by himself. He belly laughed like you wouldn't believe.

~ he could swing all day ~

~ nothing better than bare feet in the grass ~

"Go!"

2011-06-02T21:55:00.001-04:00

With keys in hand and brother's shoes on the wrong feet (in pure Nicholas-style)...

this little tike is ready to go!

(if only it was time to go somewhere!)

Officially 4 and a half!

2011-06-02T00:13:00.001-04:00

I gotta tell you, this boy purely amazes me.

My Nicholas astounds me with his intelligence, his constant need for what I'm calling "intellectual stimulation," his ability to notice everything (I swear his mind does not stop working!)....and all from a boy who I was worried about 3 years ago when he wasn't talking! Oh please!!!

Now, officially 4 1/2 years old, Nicholas is cracking me up on a daily basis with how he views the world. One day, he wasn't too pleased with my explanation of some random thing. With great insistence, he responded to me, "Well Mommy, there must be a reason for it.....so figure it out and tell me!"

I call him my little geek-in-training. He's infatuated with understanding how things operate, the mechanics of how things work and he has a remarkable memory for learning experiences. He is unbelievably creative when he's pursuing his own play ideation. He creates elaborate play schemes and thinks to use toys and household objects in ways I'm sure no other child has come up with.

About a month ago, he came downstairs first thing in the morning and announced, "So Mommy, today I want to build anemometer!"

Shocked, I asked "Nicholas, exactly what is an anemometer and where did you learn about it?"

Nicholas: "An anemometer measures wind speed and all I need to make my own is 4 white plastic cups, one red cup, two pieces of cardboard, lots of tape and a really big stick. I learned about it on Curious George on PBS Kids, Mommy."

Around here, playing in our vehicles is still a favorite activity. In late April Nicholas matter-of-a-factly explained to me, "I really, really, really want to play in Big Truck, but Daddy always says no to me."

(momentary pause as the thinking gears are turning)

"I know...I'm going to try to trick him...Yeah, so I can then play in the truck!"

(pause) "Hmmmm, now how can I trick him?" And yes, he was tapping his chin in deep tricking thought...

Respecting Nicholas' intuitiveness, its been a constant struggle to know what is best to say to him regarding William's medical needs. He comes up with comments that leave me not knowing whether to laugh or cry. One morning while watching me change William's umpteenth poopy diaper... as I was all tangled in his central line tubes and trying to keep up with poop wiping before it was leaked everywhere...Nicholas asked, "Mommy, when will William finally get the tubies taken out of his belly?" Dumbfounded, I said, "Well, he has to be able to eat and then his diarrhea has to stop and then he can get his tubies out." His response: "Well, that would be good because then you can stop wrapping him with Press & Seal for bathtime and start wrapping your meats to put them in the freezer like it says to do on the package instructions."

Can you just picture him going to school and sharing with his class that Mommy wraps his brother in Glad Press & Seal instead of wrapping her meats!

You can tell, despite him not sharing many feelings about our chaotic life of trying to meet William's medical needs, Nicholas continuously thinks of next stay in the "Blue Kid Dancing Hospital" (his original term for Upstate Golisano Hospital). You know his wheels are turning as to where he will stay, who will take care of him and of course, what PS3 game he will borrow from the hospital's Family Resource Center.

One afternoon last week, we were enjoying gorgeous spring weather while out on the playset. Nicholas looked at me and said, "Ya know Mommy, I'm wondering why I don't have tubies like William? I think I should have them too and have medicines and a backpack like him too." (cue another heart break for this momma....and tack on another 2 years of counseling he'll need as an adult).

Recently, I've been taking the approach that we are all born with our own strengths, differences and needs....William happens to have a very sick belly and needs a lot of medicines and visits to doctors. We are lucky our Nicholas is very healthy. He appears to be buying it, but still, I'm certain his mind is bending in every possible way as to why his brother has 2 tubes sticking out of his chest and why he has to carry a backpack around for 19+ hours a day.

Its mind-boggling to hear him say, "Awww, this is AWESOME!" I gets super pumped for things and is just all boy inside. He's growing up so fast and still changing and discovering new thing everyday.

With pre-school ending in just a couple more weeks, the delimma of whether to send Nicholas to kindergarten as a late-birthday 4-year-old or voluntarily hold him back from starting until 2012 as a 5-year-old has weighed on me tremendously. Nicholas scored a 147 on his kindergarten readiness test (average being 85-115), so he was clearly placed in the superior range for basic academic readiness skills. On the other hand, we struggled everyday with his limited attention span....I'd approximate it to be equal to that of an ant for tasks that are not part of his agenda. This creates a lot of difficultly for so many of life's basic daily living skills, like getting dressed in a timely fashion and eating a meal... in say, less than a half hour.

Nicholas also has a strong need for rigid routines. Heaven forbid he's pressured to move faster than his usual speed for things like getting ready for school or that he misses an episode of Curious George and his morning is practically ruined. We're also hoping someday Nicholas will expand his food repertoire to include more items than just his basic toddler menu.

I'm always enthralled to get a glimpse of the world....from Nicholas' perspective, that is!

The daughter I always wanted...

2011-05-30T23:03:00.002-04:00

Ya know those mornings when you just can't get ahead....like every little step of the way you're making one step forward and two backward. Like you're in the shower only to find your nearly 2-year-old rummaged through your underwear drawer and had littered the bedroom with his treasures... the dog chewed a toy leaving small shards of plastic toys all over the floor...you've changed 3 poor explosion diapers and already have 3 outfits soaking in your kitchen sink before 9am....

...well, this was one of those exact mornings.

I should have known that William was up to trouble when he was seemingly content as I was drying my hair. We have an ongoing battle over possession of my makeup tote. I always have to keep a watchful eye on it and lately it rarely makes its way home in the vanity because of dear William's fascination with its contents.

Little did I realize there was an old tote in the back of the vanity...filled with plenty of William's prized lipsticks!

Gotta love how he carries it like a purse. He repeatedly reminded me who was the finder of this treasure.... "ME!"

What can I say....
he's just like the little girl I always wanted.

May I add that the morning only got more eventful with William dropping his "purse" down the stairs. This would normally not be a big deal....except for the decade-old eye shadow that popped open on its tumble....thus spilling chunks of dried, flaking gray eye shadow all over the stairs....

Yup, another clean-up required!

And yet another day I tell William,
"You're lucky you're cute!"

Babbling to Butterflies

2011-05-19T23:03:00.000-04:00

We've thoroughly enjoyed watching the full life cycle of butterflies though raising them from larvae. I've been shocked to see how much William has gotten out of the experience. He gets SO excited when he hears them fluttering. He runs over to the screen house and babbles away to them...

We all Scream for Ice Cream!

2011-05-18T23:20:00.002-04:00

Aunt Elaine joined us Monday afternoon for a trip to the library and to Hafner's. As soon as we entered the nursery, Nicholas reminded us, "Remember that time a long time ago that we came here and had an ice cream at that stand over there with the glowing ice cream sign? I think we should do that again!"

Yup, he was right....last spring we enjoyed a peruse through Hafner's and ended with a most delicious ice cream! A repeat was in order!

William smacked away at his mint chocolate chip and thoroughly enjoyed the tinkling of the "wawa" fountain.

After my first picture, I told Aunt Elaine her eyes were closed. Gotta love William's response...

Thank you, thank you Aunt Elaine. We shall surely repeat again soon!

Mastering 100

2011-05-18T23:02:00.000-04:00

May 15th
Nicholas had an assignment to practice counting to 100. We've been focusing on the 10's, since he still likes to call 20 "twenty zero," 30 "thirty zero"...and so on.

Trying to think of something we had 100 of and could fit on our cut-out, we raided the candy stash. Sure enough, we found plenty of Smarties and a hefty supply of Easter sprinkles...perfect!

My boy got a good fine motor workout as he counted out 100 pieces of candy on his chart and then placed them on the glue dots. He's so ingeniously he told me, "I'm just like an automated machine in a factory....I pick up candies with my robotic arm and then the computer inside me tells me to drop them one by one on an empty glue dot."

He was so proud to see his dried finished product the next morning. Here's hoping we'll no longer hear another "sixty zero!"

Egg Critters

2011-04-24T23:19:00.001-04:00

April 12, 2011

Nicholas' Easter craft pick - Egg Critters!

This was his own original creation, which he uniquely named "Nicholas Relyea."

Writing continues to be challenging for him, so any little way I can sneak in a some practice is a plus. This day, Nicholas put forth wonderful effort to write name labels for some of our critter creations.

My sweetie posing with "Nicholas Relyea."

The grasp that only an OT mom cringes at...

Egg Critters of 2011:

Froggy

Nicholas Relyea

Chickie

Bun Bunny

Peter Rabbit

& Sheepy

Venturing to Oneida Shores

2011-04-24T23:01:00.000-04:00

April 11, 2011

Even with his painful knee, Poppie is always up for a means of enlightening William's little world. This warm day, we checked out the new playground at Oneida Shores while Nicholas was at pre-school. William especially enjoyed the rocking fish.

My, what a big mouth this one has!

This expression looks like he's thinking, "Did I ride that fish yet?"

As always, Poppie, William just loves your company, love and attention.

Ten Years from Now...

2011-04-24T21:47:00.000-04:00

In days when I find myself struggling with getting through the basics of our "new life" ...with all its complexities, little things such as this piece of writing, re-instill that which is most important...

Ten years from now, it won't have mattered whether or not the sink was perfectly scrubbed.

Ten years from now it will have mattered that I stopped scrubbing the sink to listen to a problem they were having in school.

Ten years from now, it won't have mattered that the plates were chipped or that the cups were not a matched set.

Ten years from now, it will have mattered that we sat down at the table together, said a blessing, and shared stories about what happened that day.

Ten years from now, it won't have mattered that their books were scattered everywhere.

Ten years from now, it will have mattered that they loved to read and did so in every corner of the house.

Ten years from now, it won't have mattered if they ran off to school with wrinkled shirts or grass stains on their pants.

Ten years from now, it will have mattered that they were always told, "I love you. Have a great day!" as they dashed out the door - wrinkles, grass stains, and all.

Ten years from now, it won't have mattered that their beds were made haphazardly; that there were lumps under the covers and pillows left on the floor.

Ten years from now, it will have mattered that I leaned over their rumpled beds, kissed them goodnight and assured them that even as they slept, they were loved.

Ten years from now it won't have mattered that the couch was threadbare.

Ten years from now, it will have mattered that we sat on that couch and laughed until we cried – and that on that very same couch, I held them when they cried genuine tears of sadness.

Ten years from now, it won't have mattered if there were muddy footprints tracked through the house.

Ten years from now, it will have mattered that they ran with abandon, filled their lungs with fresh air, and connected with the wonder of nature.

Ten years from now, it won’t have mattered if I won every argument.

Ten years from now, it will have mattered that I lived my values.

Ten years from now, it won't have mattered that they didn't get everything they wanted.

Ten years from now, it will have mattered that their deepest needs were met.

Ten years from now, it won't have mattered that I wasn't a perfect parent.

Ten years from now, it will have mattered – and mattered deeply – that I was a present parent.

So today and every day, may I live in the moment with my children, with my eyes to their future.

And let me offer my children the gift of what will have mattered in ten years.

~ by Lauren Rosenfeld, M.A., M.Ed. ~

Early Saturday Mornings

2011-04-16T08:03:00.000-04:00

Saturday March 26th
With two earlier risers in this house, there are plenty of days we are already downstairs and playing well before 7am. Nicholas is so into his Legos he asks to "cuddle" with them when watching cartoons. It's just a minor problem when then thing he wants to cuddle with is made of hundreds of tiny pieces of plastic all interconnected together. After many tragedies with his rescue truck falling apart, he's now learned it needs to stay on a table for "cuddle time."

The bean box is back...and William loves it!

~ figuring it all out ~

Even for this stay-at-home-mom, I'm still trying to figure out why these early play mornings just feel more painful when they occur on weekends than weekdays.

Green milk, ring pops and legos!

2011-04-16T07:41:00.000-04:00

March 17th

Right in line with our desire to be home for all holidays (haha), William was discharge two days before St. Patrick's Day. We had a really fun day filled with green foods and finding some mischievous doings of a little leprechaun who apparently snuck in our house the night before (at least according to Nicholas).

Green is hands-down Nicholas' favorite color. He loved adding food coloring to our morning milk and mixing away....but heaven forbid he drink his green concoction! It sure took a lot of enticing to get him to eventually try it.

Our little leprechaun left a few trinkets for the boys.

After the tiniest of sips, Nicholas realized, "It still tastes just like regular milk!"

...and he was back for seconds....

KISS ME

....even if I'm not Irish!

The leprechaun's ring pops were a huge hit!

Nicholas' Lego assembly skills are rather impressive for a 4-year old...perhaps even a touch scary. He put this city repair truck together with minimal assistance. He's already talking about going to Lego conventions.

An afternoon topped off with ring pops and Legos makes one special memory for this momma and two boys!

Storms Drains...who knew they could be so fun!

2011-04-14T22:49:00.000-04:00

March 17th

Our walk around the block was rather s l o w this day, after Nicholas introduced William to the fun of storm drains!

Instant FAN!

They'd search for rocks, leaves or sticks to toss down and wait to listen for the "plop."

completely mesmerized

Yup, and this was right around the time that Nicholas realized William had snatched his rock collection from the "trunk" of his tricycle....oooops.

Just one more plop...

"Yeahhh," the playground!

2011-04-11T23:22:00.000-04:00

April 9, 2011

We had a beautifully sunny afternoon...the perfect day for our first trip to the playground for the season. Daddy and I captured some fun shots of the kids just being kids.

As Nicholas has been reminding us, spring is here...finally we had some nice springtime weather.

As we pulled into the parking lot, William yelled, "yeahhh!" and clapped his hands - it was so precious! He wasted no time in running to the stairs, like an old-time playground pro.

I'd say one of his favorite things was just trotting around independently on all the stairs.

Nicholas always enjoys exploring the little footbridge and creek at this playground.

~ another round up and down for William ~

Master of the rockwall!

"Watch-out...here I come!"

I'd definitely say William is going to be a huge playground fan this season...just like his brother!

He does so well being patient with these silly sunglasses. William's eyes are very sensitive to sunlight because his pupils are often dilated. His little button nose and his wide, large face have presented a sunglass challenge for this momma!

Bitter-Sweet Milk

2011-04-09T23:21:00.001-04:00

March 31, 2011

Finally did it...I dumped "the milk."
This is the breastmilk pumped during William's resection surgery hospitalization last February through March. After multiple attempts to donate it, but to no avail, we now have the half of our deep freezer formerly consumed with frozen milk packets back for our use.

Gooey paint, a big mess and perfect afternoon fun...

2011-04-09T22:47:00.000-04:00

A Mother Who Takes Time

(Author Unknown)

I hope my children

look back on today

and remember a mother

who took time to play.

There will be time

for cleaning and cooking

but children grow up

while we aren't looking.

March 29, 2011

Nicholas couldn't recall a painter's palette, so he told me, "Oh Mommy, just open every bottle of paint and let me take care of this project! I know how to fix it."

There was a big master plan happening here, mainly consisting of color mixing.

William just admires his big brother, no matter what we are doing.

fine art....

maybe not...

but certainly a fine afternoon of memories.

"Longer than ideal"

2011-04-09T22:07:00.000-04:00

The other day, I received an email from William's palliative care doctor in response to my email to her three days previously. She started the email with "Sorry to take longer than ideal to get back to you."

The ironic thing is, I was writing her out of frustration with issues regarding William's care...in particular the general medical system...this process and people we're stuck dealing with. I'm so frustrated with aspects of William's care that I feel the need to outline reasonable expectations when dealing with his medical staff. ... how to deal with the lack of response when I'm trying to communicate with these professionals who are supposed to be caring for my very ill son. The fact that doctors and nurses are now giving out their email addresses as a preferred method of communication....I then oblige and find myself spending painstakingly efforts to write thorough, yet concise emails explaining these complex issues and concerns....but then they never respond back...no email, no phone call...no "I received your email Mrs. Relyea and we're working on it." Even when its a one-liner asking for a simple prescription refill or a copy of William's weekly labs, I don't even get that...really, how simple are those requests! Frustrating is an understatement here....

I often say caring for William and meeting his needs is the easy part....its all the other stuff that makes this experience so difficult....its the management issues...the insurance nightmare...the interpersonal interactions and familiar stressors that are the things that nearly put me over the edge on a regular basis. To these medical people, the fact that I notice small changes in William from day to day....or that I am the one there reminding his primary care doctor that another specialist once gave William a targeted goals for his labs...even though the "normal" range is different than what is best and needed for his body. It's me who is chiming in with a reminder of William's partially damaged kidney. Yes, I am the one there saying all these things....remembering all the little details that make William so unique (and complicated)....yet I feel like its falling on deaf ears....like I'm the invisible one.

As frustrating as it is, part of me has to commend this doctor for even acknowledging the time frame of her response. Even more appealing is the fact that I instantly fell in love with her very appropriate term, "longer than ideal." I've now adopted it as my personal motto.

The past 16 months of William's illness has been "long than ideal."

William's dependency on TPN is certainly longer than ideal....

I'd classify the124 days hospitalized since December 2009 as being longer (or much longer) than ideal, particularly since all but 42 of those days were after the cancer treatment....

Hell, I'd say it takes "longer than ideal" to put William to sleep every night. Yeah, those nights, like tonight, when it took over an hour and a half to settle him to sleep.....long than ideal in my book for a 22-month old!

Its been longer than ideal since I've had a decent night's sleep, say anything over 3 consecutive hours in my own bed could be really nice....

Certainly has been longer than ideal since we've gone on a vacation. Wait, what was that word?

Above all else, its been longer than ideal since our family has felt the comforts of normalcy....experienced boredom....enjoyed a dinner out at a restaurant together....had time without some sort of major stressor hanging over us...even enjoyed a simple movie together.....

I feel by referencing these frustrating aspects of our life with "longer than ideal," it brings some sense of comfort, consolation... peace to the situation.....if only....

Pure Admiration

2011-04-03T23:11:00.001-04:00

March 23, 2011

We are so fortunate to have Poppie available and very willing to help us a few days a week. He comes over and just dotes on William. Poppie following William's every lead, carries his backpack for him, is up and down from the floor with William and changes his diapers nearly instantly upon need. Sometimes I think the two share a secret communication together, as Poppie anticipates William's every request. And trust me, the two share plenty of coffee breaks together. They are just adorable to watch.

William equally adores his Poppie. This day he babbled to Poppie from the window as he was brushing the snow off his truck when leaving. William was waving, tapping the glass and humming a little tune to his favorite Poppie. It was absolutely unforgettable.

Lovin' those Girl Scouts!

2011-04-03T22:47:00.000-04:00

Scout Aunt Elaine has kept up well stocked with Thin Mints this spring! William insists on having the entire sleeve. He takes a couple small bites from along the edge and then demands me to take it (and eat it, of course!).

Thankfully, Nicholas is pretty easy-going on the fact that brother divies the goods. He was teasing me with his cookies.....right before he shoved it in his chompers!

inventory counting

freshly licked chocolate fingers

Thanks Aunt Elaine~ we are doing our best to ration our latest box!

Looking up to big brother...

2011-04-03T22:33:00.000-04:00

Nicholas has been making nice progress with his computer games. Its our little effort to establish some daily "independent work time" - much needed for both Mommy and Nicholas. This day, William sat next to his big brother for a good 20 minutes watching his every move on the monitor.

See those sneaking fingers....he's trying to distract me with a cute face while he attempts to press a button. Gotta give the boy credit!

From this angle, I think they are looking more alike ~ love it!

Of course, William is such a hambone, he spun around to give me a "cheese!"

"More"

2011-04-03T09:41:00.000-04:00

Nearly 6 months ago, William's speech therapist recommended we introduce some sign language to encourage easier communication and decrease William's frustration. He mastered the sign for "more" within one session....and now he refuses to attempt to say the word. In fact, he refuses to verbalize any other word that he uses a sign for, even though I'm sure he can say things like "more" and "please" since the stinker can say "ut oh, spaghetto-o's!"

I have to say though, his little fingers pointed together for more is so stinkin cute!

A boy and his love for Coffee

2011-04-03T00:17:00.001-04:00

Every morning, William carries out his little ritual....gotta make the coffee!

This boy may not talk much, but he can certainly clearly express his wants when it comes to his love for coffee. He stands at the stove, pointing to the kettle making his little noises, "hmmmp...cacoo...hmmp" until you carry out his request.

Can you tell what he's thinking?

My guess is, "seriously mom, I can't get my picture taken before my coffee!"

Oh, the kettle is about to whistle!

Finally....one half cup of instant decaf!

William repeats, "hot, hot!"

From here, its all his show...William requests a bowl of ice cubes, the sugar bowl and a "poon" (spoon).

With all his supplies, he's one happy boy!

adding the ice cubes....one at a time...

Finally, the first taste....ahhhhh!

Could that tongue be any cuter?

This boy just loves his decaf!

~ one happy boy ~

Mommy-Nicholas time...

2011-03-28T22:54:00.022-04:00

It's official....Nicholas has out-grown his naps (sigh).

Its been a progression...and trust me, his body still needs the rest time,
but he just won't g i v e i n.
It can certainly make for a challenging afternoon, but I have to say, bedtime is much easier now....so there's at least a light at the end of the tunnel.

Now that William is pretty consistently napping after lunchtime (although far from a consistent length of nap), this gives Nicholas and I some well-needed quality time together. It's finally a time I'm not telling him, "Hold on, I need to go change William's diaper....change his pump...give him a med" or all the times I shoo him off because I'm on the phone for something relating to his brother.

This day, we had a high-flying, exciting game of Ants in the Pants.

I just treasure all his facial expressions...

The look of concentration...

Mr. Curosity

The Attentionist

The Strategist

~ full cuteness ~

the look of defeat (by an ant)

~ the celebration of success ~

Trust me, we need this time together...its the best thing we do for each other every day.

How quickly life can change...

2011-03-20T21:20:00.000-04:00

For a rare occasion, I can honestly say I had my stuff together by the evening of Sunday, March 6th. Earlier that day, our family had attended our first St Baldrick's event, hosted by St. Joseph's Church in Camillus. I spoke at the event, we connected with other local cancer families and little William got his picture taken with six other warriors!

After a whirlwind weekend, I was excited for Monday and had all my stuff in order. All laundry was caught up and back in its home in closets and drawers, the house was tidied up, Nicholas' backpack was ready at the door...I even had clothes laid out for the boys and I. We had a fun-filled Monday planned and many other highlights for the week to come.

William had a difficult Sunday night, so I ended up sleeping with him. When I heard the plow come down our street around 5am, I wondered how much snow we had gotten. I never would have expected a snow day in March....but yes, it happened.

Just with the unexpected weather, our day dramatically changed. The housekeeper cancelled, Aunt Elaine was unable to make it for our planned afternoon funnel cake party, I cancelled plans with Jodi to see her newborn baby I've been dying to see (and to bring my god-daughter's very overdue Christmas presents)....and we haphazardly figured out a plan to get the boys and I through the day.

In the afternoon, we played outside in all the newly-fallen 18 inches of snow. Nicholas has been begging to make a snowman, but this snow was not the packing-type. We compromised by making a "Lego-snowman" using the snow brick maker.

Nicholas was really proud of our creation - and creatively named Lego-man "Nicholas."

Truthfully, William is not a huge snow fan. He basically went outside with us because he wouldn't have liked the alternative (to be separated from Mommy)...so needless to say, he obliged. He was rather intrigued with the snowman's sweet potato nose and kept trying to go after it (as Nicholas was screeching, "No William, you are going to knock-down my Lego Nicholas man!")

That evening, we all went to Wegman's to grab dinner and do a much-needed grocery shopping. By 6pm, William was at the end of his rope. After eating a nice smorgasbord of rice, green beans, turkey from Mommy's sandwich and sharing a leprechaun cookie with Mommy and Nicholas, William cried until he was carried through the entire remainder of the shopping trip. He was attached to a second hydration pump for the day because I feared he looked slightly dehydrated (he had terrible diarrhea all day...like 9 times in a day).

William woke three times between 8:30pm and 11pm. At 11, he felt warm and was acting a little odd. His temperature proved to be elevated - at 100.5. For most 21-month olds, that temp is nothing concerning, could even be from teething. Knowing William was due for his weekly lab draw at 8:30am Tuesday (literally, 9 hours away), I figured I could give him a dose of Motrin to get us through the night. Lord knows, heading to the ED in the middle of the night is anything but fun.

I stayed with William after giving him the Motrin. Because he is a cool cucumber and consistently runs right around 96.5 degrees, by 101 he was really stressing with increased respirations and a very rapid heartbeat. He did not sleep, but rather laid there about a foot away from me in bed, just staring at the side of my pillow. He did not seek out putting his hand down my shirt...I knew something was brewing.

Repeatedly I took his temperature, each time he cried "owie, owie" with just having an axillary temp done.

My stress was instantly confirmed as soon as the thermometer started its high alert chime. My heart sank to my stomach when it then glowed 103.1 at 12:45am.

As instructed to do, I paged Dr. Rivera (who did not return my call) and then spoke with Dr. Wali, the GI doctor on call. He instructed me to go to the ED and to expect to be admitted due to the excessive temperature.

Fred and I instantly go into packing mode. He packed the items he knows I always need and then held William following me through the house as I had to pull together additional items. Poppie came over to our house and decided to go to the ED with William and I.

On the ride there, William stayed awake the entire time. His eyes big and wide alert. The ED staff rushed us in, promptly took William's vitals...and would you believe - no temp. I looked at my dad and said, "God, why are we here....should we just leave now?"

At 3am, I literally considered walking out of the ED.....even envisioned myself picking up William and going. Being there with him is virtually signing him up for a whole lot of trauma....bloodwork and cultures off his central line, a peripheral needle stick to run cultures, a urine catch (depending on the attending ED doc, it could mean a sterile urine catheterization or a bag collection), a chest x-ray....and of course repeated blood glucose sticks because William's glucose is certain to drop during or after a high fever.

The only thing that stopped me from leaving was recalling how odd William had been staring at home. Even his staring in the truck was just not expected for a boy who had hardly slept a wink all night.

And so the process began: history with the triage nurse and the nurse assigned to William, an interview and exam with the ED med students and residents...then all of the above repeated with the ED attending...cultures, 2 attempts at a peripheral draw, a chest x-ray, urine bag collection....and of course, the tried and true drama of a concerningly low glucose level of 38 while TPN was running. Admittedly, the staff this time around worked well and promptly. William had his two antibiotic runs started within 2 1/2 hours of us getting there.

Randomly, William was comforted best with this snack bag of Goldfish crackers I grabbed as we left the house. He would not let go of that bag - he clutched it with all his little might and nibbled on a half dozen or so crackers through the peripheral ordeal.

Experience has taught us if they can get an IV in while doing the blood draw, we go for it. William's single lumen central line has proven to be more of a problem than a benefit....especially now that his TPN runs 16 hours a day.

After being in the ED for 7 hours, we were admitted in-patient for "observation." The insurance receptionist explained that an observation admission means we may only be there for a few hours or less than a day, but the doctors want to keep an eye on William. I thought this was interesting, since we've never been admitted under this title....but whatever.

At 10am, we were just getting upstairs to our home-away-from-home in Peds Unit 11E. All our familiar faces greeted us and I was relieved to find out Gail was William's assigned day nurse. She is definitely one of the best nurses of the unit and knows us well.

William was pretty tired once we got settled and drifted off to sleep in between all the nurse, med students and resident exams. The head resident even told me he had already talked to Dr. Rivera and they were not planning to continue additional antibiotics until we had growth in his cultures (mind you, this can take days for growth). I really started to question if we needed to be there.

Around 12:30pm, William started an odd moaning. He got very fidgety, couldn't seem to get comfortable, repeatedly said "owie, owie" and I could feel him starting to shiver. His chills became more evident, sometimes with his teeth even chattering and his hands and feet quickly became modeled. Our nurse got right on things....immediately slapping leads on William & hooking him up to the monitor, she took his temperature (which suddenly was 104 degrees), checked his capillary refills (which were poor) and had another nurse page the resident to our room ASAP.

By this point, William's heart rate was consistently in the 190's or above and his respirations between 50-60 breaths a minute. The head resident, Dr. Mittigia, seemed concerned with William's presentation. He had the SWAT team from the PICU paged, ordered a bolus of fluids and continuously checked William's cap refills. He went up to the PICU to talk to the attending and said he would be back in 3 minutes.

Within those 3 minutes, William took a major turn for the worse. His chills got much more dramatic and he had a few episodes that he seemed to be getting shocked from an internal source. He'd suddenly have a major chill come over him, his arms and legs with stiffen up and throw out into extension, his whole body shook, he's do a loud scared moan, gasp his breath... and then grab his chest saying owie as the episode was ceasing. Saying this was incredibly scary would be an understatement....and even with a room full of medical staff present there, nobody seemed to know what to do. These episodes just kept coming, increasing in intensity.

Around this time, the PICU nurse came running in and Dr. Mittigia took charge and said he was pretty certain William was having febrile seizures.

During our conversation, the next seizure was a doozie. It seemed like William couldn't breathe. He was shaking, his body stiff, eyes rolled back in his head, the monitor was going crazy with alarms screaming and I just nearly lost it. I was staring at the monitor and honestly could not even read it. It was like the numbers and lines were jumping all around. The staff told me to put William on the bed. They shoved the crash cart into the room and started William on oxygen....and still I could not read the monitor - these same monitors I've been dealing with for the past 15 months.

I literally began seeing my own life flashing before me. Ya know how you hear the stories from people in near-death experiences.....well, I'm telling you, I saw my own life flash. I yelled, "DO SOMETHING! What is happening.....this is not how this is supposed to happen! What is going on!!!"

My dad was there, once again, by my side through another huge trauma. I couldn't even look at him....he was hardly holding himself together, but tapped my back saying, "He's breathing....he's okay."

I really think if it were anyone else telling me that, I wouldn't be able to believe them....thank god my dad could at least read that damn monitor.

The PICU attending, Dr. Ragosta, came and ordered a glucose bolus and another fluid bolus. William's vital signs were not improving and his capillary refill was still 4-5 seconds. William looked so pale he had a grayish hue. He looked lifeless laying there on that bed. We had nearly the entire staff of the floor outside our door looking in....literally everyone there knows and loves our William.

Eleven hours after his blood cultures in the ED, William's peripheral culture came back growing a gram negative bacteria. Gram negatives are very dangerous blood infections - finding it circulating in his bloodstream confirmed William had septicemia. He had gone into septic shock and experienced febrile seizures.

~

A year an a half ago, I could have written an entry just on how an unexpected snowstorm in March turned our day up-side-down. In our world now, major things can happen in what seems like a heartbeat. During the day, William played nicely, was outside in the cold for well over an hour, was dragged to the grocery store and pretty much had what could be a typical day for any 21-month old. A random fever that quickly spiked and an overly in-tune mother who worried about odd staring brought us to the ED. Within hours, my baby laid on a hospital bed with his heart racing at 220 beats per minute, seizing and in critical septic condition.

We remained in-patient for 8 days with this infection. William grew two dangerous gram negative blood infections: Klebsiella pneumoniae and escherichia coli. After a consultation with the director of Infectious Disease, they are approximating a 10 percent chance we will be able to fully clear this infection and salvage William's central line. Due to his expected long-term need for a central line and the fact that this is already his third line, William's team collectively agreed to attempt to clear the line with two weeks of IV antibiotics. There are a limited number of veins in one's body for central line access....we must give this our best effort in order to maintain access for William's long-term needs.

The decisions we are constantly finding ourselves in and the needs for continuous advocacy for William's well being is incredibly challenging....and heartbreaking all at the same time. It's hard to even think about the reality of living in this world of great medical frailty. I often feel like I'm on a tightrope of paranoia while attempting to carry what feels like the weight of the world on my shoulders.

Patience literally wearing off...

2011-03-13T13:45:00.000-04:00

Shortly after William's diagnosis, my mom gave me this bracelet that she bought from Maureen's Hope. She, my sister and myself all have matching bracelets. It has a hope, strength, love, courage and patience bead. I had worn it every day, often never taking it off.

Day 6 in the PICU, I looked down at my bracelet and realized my "patience" bead was literally wearing off its beautiful, shiny, silver finish... leaving a dull, ugly tarnish. It was the only bead that this was happening to....

There are moments in life that small symbolisms speak louder than words ever can.

~
Have patience. All things are difficult before they become easy.

~ Saadi ~

Day 6: February 24, 2010

2011-03-03T23:09:00.001-05:00

Hearing the resident report “Day 6 post-op” at rounds this morning was quite the wake-up call......what? I thought we were only supposed to be in the PICU for 2-3 days? What happened to our original post-op plan?

William had another restful night, with only a few wakings. Around 8:15am, the white coats approached our little corner of the PICU. Dr. Savard frankly said, “Okay, we’re getting this tube out, he’s fine.” At that point, William was the slightest bit awake, certainly not fully alert and his eyes still closed...just as they had been for the past 24 hours.

I was told to leave the room (of course, it was so early in the morning, that I was there alone still)...

gulp...

About 15 minutes later, a resident came to the hall to tell me William was doing well and I could return.

I came rushing in to find William being sat up, a little oxygen mask on him and with TWO less tubes: the intubation tube and the NG. Woohoo!

Within a minute, William started vomiting. They deep suctioned him and he vomited again...and again...not pretty. It was obvious his NG had been clogged for quite some time...he was full of gunk.

After about 25 minutes off the vent completely, they decided to start C-PAP support. William was really straining to breathe, he had all the signs of breathing difficulty (flaring his chest and nostrils) and his heart rate was too high.

Once all settled with the C-PAP head gear, complete with a padded head piece, William was exhausted from all that labored breathing...and once again, he slept hard!

William was so exhausted, he slept through most chest PT sessions, that were done every hour. He had a lot of chest congestion that desperately needed to be broken up and suctioned out. Now without the trachea tube in place, the deep suctioning process was even more traumatic.

Whenever William began to wake up a bit, he was distressed. The hope was to discontinue C-PAP later that day so William could begin clear liquids (it has been 6 days since he ate anything).

If you remember the original expectations for William's surgery, he was going to be kept sedated and intubated for 2-3 days post-surgically and then transferred back to Sloan to begin therapy and for his final stretch of recuperation. By day 6 now and just being extubated, we were all suffering from home-sickness. Fred made plans to return home and spend some quality time with Nicholas, who we all desperately missed. But first, he gave our little trooper one more kiss...

Although we never weighed William through the PICU time, his edema was certainly at its peak around this point. He was H-U-G-E...

After 5 hours on C-PAP, William was still struggling to breathe.

William's coming back....

By this point, William's IV pain med had been discontinued a day and a half previously. He was only receiving fentanyl through this epidural. As the day went on, he was showing more signs of discomfort and started on Toradol.
His discomfort is obvious...

When Dr LaQuaglia came in the early evening, he said the plan was for William to be transferred back to Sloan the following day (Thursday).

William’s evening nurse, Mo was wonderful. With careful planning of all lines and tubes, she transferred William into Mommy’s arms, first time since last Friday. I have to say, it was incredibly overwhelming to be holding him and maintaining everything in its position....

but boy, did that hour with him feel so good!

(can we say there's one exhausted Momma!)

Now that he was extubated, William was introduced to the PICU speciality...the percussion bed.
Percussion Bed this is William...William, meet the Percussion Bed.

William says, "oooo, I LOVE it!

This night was also noteworthy in that William began running a low-grade fever, around 100.5. With the elevated temperature came elevated heart rate and respirations...which in the PICU means lots of monitor alarmings....not a restful night.

Day 5 in PICU: February 23, 2010

2011-03-02T22:59:00.000-05:00

William had the smoothest night yet in the PICU. He seemed overall comfortable, with only a few wakings. They tried turning the vent back to 10 breaths per minute but William's entitles (carbon dioxide) went up, indicating he was not tolerating the decrease in ventilator help. It was then resumed at 12 breaths per minute and 35% oxygen.

8:30am brought morning rounds and our first experience with a new attending, Dr. Peter Savard. We later nicknamed him "The Bald Eagle" (any idea what he looked like?)

Dr. Savard interrupted the resident as she was reviewing William's history when she said "Day five post-op..." He said, "Excuse me? And why are we still intubated? We need to get this moving....stop all sedative and systemic fentanyl, only use the epidural. We need to get him awake and get this show going. Enough already."

For days, we had been told that William would show readiness for extubation at his own pace. They would notice breathing attempts on the vent and he would begin to tolerate longer periods with reduced support. Dr. Savard's perspective was much more radical....and certainly anxiety-provoking for all of us. My mouth was literally left hanging open with this new approach...the bald eagle swept away just as quickly as he had swept in barking this orders.

By 9am, the ativan and IV fentanyl were stopped, except the fentanyl epidural….and William was very happy to sleep! Go figure!!!

In this photo, you can see the bruising in his left groin area from the arterial-line disaster. He had many bandaids too, covering other a-line attempts. So sad.

His little wrist in a restraint...

William's heart rate remained elevated four full days later, averaging around 147 bpm at this point. His body remained under a tremendous amount of stress, from fluid overload, medication effects and general traumatic shock.

11:00pm that night, we all joked that once again, William had dictated his course of treatment. After being taken off the sedatives and systemic pain meds over 14 hours previously, he decided to catch up on the sleep he’d had been lacking from the past 6 months. I was certainly quite the change from what we are used to with our sleepless William. Yup, William had remained asleep nearly the entire day, rather comfortably, I may add.

The four of us have been bedside waiting for him to wake up and show his displeasure with the tubes and arm restraints! We had a feeling he would be a little pissed when he finally woke. Because the hospital is staffed less over night, the team made arrangements to give William a short-acting sedative (propofol) at 1am to keep him sleeping through the night. In the morning, the medication would be stopped and we would move forward with extubation.

Day 4: William turns 9 months

2011-02-27T22:13:00.000-05:00

Day 4 - a sun-filled room with William's vent set for 14 breaths per minute. He was making some breathing attempts, even up to an extra 4-5 breaths per minute... and other times completely dependent on the vent....progress none the less.

To top if off, he was making a few more movements, showing signs of trying to wake, open his eyes and even rubbed his eyes and face.

At this point, William still required very frequent deep suctioning of his lungs through the breathing tube. He'd require 85% oxygen after suctioning and time to rebound....it took a lot out of him and was still very difficult to watch, time and time again...

For the first time since surgery, William's labs looked much more stable and he did not require blood or albumin...but, he did need a couple potassium runs (the effects of receiving Lasix to reduce his fluid overload).

A dietitian came to discuss William’s feeding habits prior to surgery. I expressed concern that he had not eaten since before midnight on February 18. She said she was going to investigate orders to start TPN.

TPN was indeed started that night. A year later and still having William fully-dependent on TPN is certainly not what I would have foreseen last year on this first night.

~

~ a peak into these days ~

The PICU team knew William was not ready to be extubated...he was still requiring at least 12-14 breaths a minute by the vent and his oxygen saturations would start to drop over time when he was at lower vent settings. As the day went on, he became more and more grabby and eventually needed to be placed in restraints.

Here's one last picture of those out-stretched arms.

Our vascular ultrasound of William's left leg finally happened.....now that is was Monday (ugh!). His foot still had a poor pulse and was cool to the touch. In the end, the final report found decreased blood flow in William's SFA – superficial femoral artery, which supplies blood to the knee and foot. The report suggested this could have been from the a-line or from some type of stenosis/narrowing of the artery, perhaps congenital. In the afternoon, we finally heard from Dr. LaQuaglia’s fellow. He confirmed that the clot was definitely from the a-line. They wanted to keep an eye on it. William’s co-ags had been high and he was still too close following major surgery to consider a blood thinner.

Even changing William's diapers was a huge production. One person had to support the tubes and wires, while another person did the dirty end of things. William's scrotum was incredibly swollen....the skin looked like it could pop....it was literally painful to look at.

Sorry William.... I know someday you will be so mad at me for sharing all these details!

~ Poppie with our little 9-month old (sleeping) warrior ~

We have MOVEMENT!

2011-02-26T21:41:00.000-05:00

At 4:40am on February 22, I witnessed the most reassuring event of the previous 3 days....William stirred for the first time!
He moved his arms and legs a bit....it was the best thing...

It only lasted a few short minutes and clearly tuckered William out instantly. Before long, he was settled back down...with the beeps and sputtering of vent's humidifier filling the room...

Day 3 in PICU

2011-02-26T21:22:00.001-05:00

Day 3 was a busy one. It started off with what became the norm in the PICU - the daily chest x-ray at 4:30am. After all the stress of the A-line, I was just settling to sleep before needing to leave the room for William's x-rays and another little baby in the suite.

Shortly after, the fellows came by to check on our little sleeping prince. They reviewed William's blood pressure trends and planned to wean him off the dopamine. By 6:15am, his BP was holding steady around the upper 80’s over 30’s....without dopamine. One major accomplishment done.....check!

7am brought a beautiful sunrise and one of our favorite nurses, Char on duty. As she was doing her initial exam, I noticed that William’s left foot was blue, almost purplish on the bottom. Knowing the arterial line had just been placed in his groin area of that leg same leg, we all became concerningly alarmed. Both nurses covering the three beds in our PICU suite could not get a pulse and the left leg and it was obviously cold.

Char paged the attending STAT and after a whirlwind of chaos, that darn A-line (that was just placed at 3:30am) was removed at 8:30am...by the same attending who put it in just five hours previously. There was a lot of concern William's artery had clotted. They promptly called vascular surgery who came and said he thinks its just the femoral artery reacting to the arterial line. He didn’t think it was a clot and didn’t think William needed an ultrasound because his arteries are so small it is difficult to see on ultrasound.  The clearly irritated vascular resident also added, "Anyway, there are no vascular techs available today, since it's Sunday....maybe an ultrasound could be done tomorrow."

Anyone who knows me would know what to expect from my reaction to his nonsense response. I was clearly not happy with this answer, since a clot could be fatal or very serious, at minimum. I told nurse Char who went to her charge nurse and the attending. The attending resident came and apologized for the vascular doc and said she will ensure all is done that is needed. She had already called Dr. LaQuaglia’s cell phone and left a message for him to come in.

In the meantime, William received another blood transfusion, after his hemoglobin was at 7. He also got an additional albumin infusion and needed a new IV for frequent lab draws and medication infusions. This time around, it only took 4 stabs through William's terribly puffy skin to hit a good vein in his right foot.

By 10:00am, a hematologist came to examine William and give input about the cold leg. She advised to give a blood thinner, to be most pro-active in preventing permanent damage from what she considered to be an obvious blood clot in his femoral artery.  Because William was still less than 48 hours post-op, she needed to review her recommendation with Dr. LaQuaglia. In the meantime, we kept warm packs on William's lower leg and monitored him closely.

Around 2pm, Dr. LaQuaglia came in to see William. He examined him carefully and assured us that William’s leg will be just fine, saying "this is nothing....this is no big deal."  I have to say, my stress level seemed only to increase with this answer....given that William's foot was still cold, blue and pulseless. Dr. LaQuaglia went on to explain that he wrote a paper on this exact thing. All we could hope for was that this too shall pass...hopefully.

We were only on Day 3, but were really feeling the stress. There was CONSTANT noise in William's PICU room. There were two other severely ill babies sharing our suite....all on vents and monitors galore. The nurses were continuously hustling....and William was just constantly keeping everyone on their toes.

I remember going through the bag I had brought to Sloan on surgery day. It had the clothes William wore the morning of surgery and some of his favorite toys. For a little stress relief, we gave Sophie, the squeaky giraffe a tour of William's room.

She enjoyed the view of the river...

and just had to kiss her sweetie William....

...and of course, they needed some cuddle time together.

That Sunday, we were blessed with a visit from Uncle Alan and Aunt Laureen who traveled from Connecticut to support us. As they were ready to head out of town, they dropped Fred and I off at Ronald around 5pm. We crashed.....and crashed hard. I woke at 11pm in a complete panic. I had that feeling of, 'where am I, what day is it.....what has just happened to me." Yeah, it was called s-l-e-e-p....remember that novelty?

We received great news when we got back to William, Grammy and Poppie. A pulse had finally been found in William's foot! It was faint, but audible with the aid of a Doppler....thank god!

Later that night, they also weaned William's vent from 16 breaths per minute to 14...he was making some breathing attempts!

~ William and nurse Char ~

She was an awesome advocate & skilled nurse to have on our side through all the stress of the pulseless foot. Definitely a nurse we will always remember...

PICU Day 2 - February 20, 2010

2011-02-25T23:27:00.001-05:00

Saturday morning, we had a beautiful sunrise entering our PICU room, overlooking the East River and Roosevelt Island (pay no attention to the dirty windows).

The sunlight gave William a warm, beautiful glow.

As we've learned, each hospital's equipment is a little different.

We all took turns sleeping on the "couch."

Aunt Elaine and Uncle John came to check in on their little Godson.

By 5pm Saturday, we were feeling a little punchy out of sleep-deprivation. We got in some much-needed giggles....that is, as long as you weren't the one sleeping (thanks for being a good sport, Daddy!)

You could still see the surgeon's markings to realign William's belly button after the thoracotomy. The white bandage under his incision was supporting his left chest tube and he continued to be catheterized.

When Dr. LaQuaglia came for rounds at 8:30am he said William was doing everything as expected, or at least within the range of expectation following a major surgery. He required slightly more pain meds and sedation than may have been expected, but so far, all was going smoothly. The swelling of his body, which had been increasing steadily through the night, was expected following an involved surgery. He told us William would likely be on the ventilator until at least Monday or Tuesday.

Throughout Day 2, William’s swelling increased considerably. He required two albumin infusions and a red blood cell transfusion. Labs were drawn every 8-12 hours.

William remained on dopamine to keep his blood pressure stabilized. Apparently, the PICU had many serious cases in the unit that required the attending doctor's attention. We had waited all day for Dr. Pon to become available to surgically place a new A-line in William. Around 9pm the fellow came to prep William and realized he need additional sedation medication to keep him calm during the procedure. The meds and attending finally arrived at 11pm.

We were all asked to leave the room for the procedure. Due to William’s size and severe edema, the fellow and resident had trouble getting the line in.The four of us tried to wait patiently in the main waiting room, some of us even falling asleep out of pure exhaustion. We got occasional updates from William’s nurse, but overall, the minutes seemed to pass with agony. Around 3am, Fred and I were ready to throw a fit....we had been away from William for four hours to place an A-line....and his darn surgery to remove a massive tumor took only 9 hours! On top of it all, I was getting increasingly concerned with the fact that William was under further sedation and loads of pain meds for all the poking and prodding of this procedure. What complications would this all cause now?

The line was finally in place at 3:30am…it took 4 ½ hours to place the arterial line! It was in place in William's left SFA (superficial femoral artery).

Settling in to NY Presbyterian Hospital PICU

2011-02-25T22:25:00.000-05:00

As per the original plan, William was transferred to NY Presbyterian Hospital's PICU because of his critical status post-operatively. Presbyterian is literally across the street from Sloan....and its a massive hospital....like two full city blocks long. It has 2,272 beds (as compared to Upstate Hospital's 409 staffed beds), with 20 peds in the PICU. The most severe of the most severe kids in NYC are brought to Presbyterian's PICU.

I knew the ambulance trip across the street was going to be brief....but I was not expecting they would take William out the front door of Sloan (the one we always use), put him in the ambulance, turn the lights on, make a big U-turn on York Avenue and pull into the ambulance bay at Presbyterian.

Simple as that...

Apparently William didn't care for all the gosling during the ambulance ride. Fortunately, I was placed in the front seat of the ambulance so I couldn't see all that was happening in the back. William ended up getting 3 rounds of sedation and pain meds during the brief ride...

William was kept on systemic fentanyl (2mck/kg) for pain management and ativan for sedation, each every 3 hours.

When we first arrived in the PICU, the transport team continued to work to stabilize William, under the direction of Dr. Steven Pon. At times, there were six people surrounding his bed....it was intense. His nurse seemed rather flustered. At one point, she broke out in nervous hives. Once things settled down many hours later, she shared that she is a traveling nurse and just started at Presbyterian earlier that week.

Right away, William had difficulty maintaining good blood pressure – he was running too low (around low 60’s over mid 50’s). Heart rate was often high (due to low BP)...in the 180-190’s. As his numbers continued to worsen (reaching low 60's over 20-30's), he was started on dopamine around midnight.

Dopamine stabilized his BP and HR better, but before too long, it seemed as though his arterial line (in left wrist) was shot. They were hoping extra fluids would revive it, since after multiple boli of fluids, it would show some response on the monitors. They even tried pushing bicarbonate to stop arterial spasming, but all efforts could not save the original art-line. They started scoping out an artery for a new A-line (which was needed to keep an accurate & continuous BP measurement), but all preliminary scouring was not looking good due to William's increasing puffiness...

William's thoracotomy incision went from the middle of his abdomen to the middle of his back, in a horseshoe-like shape. Because of his sensitivity to adhesives and dressings, Dr. LaQuaglia internally sutured him and used a surgical glue on the outside.

full-dependency on the ventilator

As the wee hours of that first night went on, William continued to have problems with low CVP's (central venous pressure - the pressure of blood in the thoracic vena cava, near the right atrium of the heart. CVP reflects the amount of blood returning to the heart and the ability of the heart to pump the blood into the arterial system). William was ranging between 3 and a high of 8. They would push extra fluids and he'd react positively, but could never get over 8...docs wanted him around 12, or at least 10 as minimum.

That night, William required lots of chest suctioning through the trachea - yuck. He had two sets of chest x-rays to monitor any fluid build-up. His left lung had a chest tube – but there was concern of fluid accumulation on the right side.

As I attempted to sleep with one eye open that first night in the PICU, the complexity and fragility of William's status quickly became obvious...

February 19, 2010 - Surgery Day

2011-02-23T23:18:00.000-05:00

Had this post been written last year, surely it would be much different than what it is now, written a year following. Even though a full year has passed, I remember the majority of this day like they are forever etched in my memory....the other portions are lost in a numb blur...

The five of us (Fred, my parents, William and I) walked the 6 blocks along 1st Avenue to MSKCC at 5:45am. It was weird to see the city in its early morning preparations....there were many delivery trucks pulled up to stores, everyone's sidewalk bilco doors were open to access the business's underground storage, there was minimal traffic and overall a dramatically different feel than the normal city bustle. It was also a frigid, windy morning.

William was starting to loose all patience by this point, after his all nighter with Poppie, he was not only over-tired but rightfully hungry (he had not been fed in seven hours, literally the longest he had ever gone without feeding). During the walk, he looked up at me a few times....you could sense fear in his eyes. You could tell he just knew something different was about to happen.

I felt numb emotionally and physically as I carried William up that street.

It was like the world was happening in slow motion, even though we were all walking so fast, if only in an attempt to keep warm.

After his all-nighter, William was clearly over-tired and rightfully hungry. He had not seen me since around 1am.

The hospital was a ghost town but there were the appropriate staff at the Day Hospital where we were to first check in. Right about then is when William just lost it.

He became completely inconsolable...in every aspect of the word. He screamed his little head off and just would not stop. He was incredibly tired and madly hungry....nothing else but to nurse and put himself to sleep was going to make him hungry by that point.

Honestly, it was one of the worst hours of my life.

I had this hysterical baby, he was getting everyone around him upset and un-nerved, my chest was throbbing with his every cry and on top of it all, I knew I would have to turn him over for this life-threatening surgery...all I could think to myself was, "this is not how this is all supposed to be...this entire situation is just wrong...wrong..."

After an hour and a half of hysterics and everyone trying everything possible, William finally settled down around 7:30. The little red maraca from that awesome toy store on Lex Ave saved the day!

Thankfully, William settled down and we had a few nice minutes before we had to turn him over. He enjoyed banging his hand on the tv while Sesame Street was playing in the pre-surgery room.

Anesthesia came at 7:45am and gave William a strong sedative. It started to make him a little sleepy looking, but before making it to the OR area, he was already perking up some so they gave him an additional dose. Dr. LaQuaglia, the surgeon, took William from my arms and carried him in the OR.

I could barely get the words out, "Please take good care of him."

7:50 - William placed under general anesthesia for preliminary procedures, prepping, catherization, etc

9:10 – Dr. LaQuaglia’s surgery officially began

Our team of 6 anxiously sat in the surgery waiting area, keeping a close eye on the surgical concierge who rotated through the families to update on each patient's surgery. We received an update once every two hours.

Our first update was around 10am. Everything was going well and as expected. No concerns.

At 11:30, Fred and I toured NY Presbyterian's PICU with Meredith, the Nueroblastoma team's social worker. We saw where William would be transferred and a mini-tour of the amenities of one of the top hospitals in the country.

We arrived back to "Team William" anxious to share we missed the noon update from the OR. Word was, all was going well. Dr. LaQuaglia was in the upper chest area – where he decided to begin.

Around 1:30 I received call on my cell phone from surgical concierge saying she would down to meet with us in 15-20 minutes. We were all very nervous and anxiously awaiting every lab coat that came around the corner. 45 minutes later we went to the concierge desk to ask for Maureen (the concierge who had just called me...needless to say, we later nicknamed her, The Nutcase). She was nowhere to be found - lovely.

Another 15 minutes of torturous waiting and I decided to call back the number that had called my cell. I was so worried and sick to my stomach, I couldn't even talk.

Fred proceeded to have the most bizarre phone conversation with "The Nutcase".... all the while we could see her from across the room talking to him. She explained to us “hospital time…where 15 minutes really means 30 minutes or more…so there was no reason for us to worry.”

I guess Maureen has never been on the side as a patient's family member waiting while their loved one is in a major surgery, none the less a 9-month old's parent waiting while a major tumor was being removed....

Despite the near anxiety-attack we were going to be given bad news, all reports from the OR continued to be good, with everything going as expected. We were reminded by Maureen...and the concierge who took over coverage for the next shift....it was just going to be a long surgery, requiring a lot of time to slowly remove the tumor.... bit by it.

At 3:30, I checked the time and re-calculated William's time in surgery...8 hours down...and counting. Around 3:45, my cell rang. It was the OR nurse saying all was going well and they were beginning to close him up. The numbness came back as I processed what was being said to me.

Suddenly, Dr. LaQuaglia got on the phone and said, “All is well. The tumor is out. We are closing him up. I will meet with you soon. Good-bye.”

Never have I ever had such a most wonderful one-sided conversation!

At 4:00 we headed up to the 6th floor and were brought to a surgical consultation room to meet with Dr. LaQuaglia when he was ready. We waited....and waited.....and waited..... (again, on hospital time, I guess)

5:30 – We were informed the transport team arrived and were meeting with Dr. LaQuaglia.

A while later, Dr. LaQuaglia came to our packed little consultation room. All six of us were crowded in there. He looked exhausted and calmly share the news – everything went smoothly, he felt as though he was able to remove the entire tumor and everything that looked suspicious. He could not feel a mass or see any sign of disease in the liver – but took a wedge biopsy, as discussed.

(breathe, Mommy....continue to breathe)

Dr. LaQuaglia ended up removing many lymph nodes around the tumor area and also a grouping around the aorta. He decided it was not needed to put in an additional central line. William's blood loss was minimal. He received two transfusions during surgery. William remained intubated on the ventilator, had a chest tube in the left lobe, a foley catheter and an NG tube to decompress and suction his stomach.

Through the conversation, I literally had to remind myself to breathe. I could barely look at the doctor, none the less get a thought out. At the end of the conversation, I tapped Fred. He thanked Dr. LaQuaglia for all he had done for William. Dr. LaQuaglia just pointed upwards to the heavens, shook our hands and left.

Within minutes, Team William pulled out their phones and were texting the good news. I'll never forget the sight of the two grandmothers texting away....seriously, at that time, I was a texting minimalist and there they were!

Living in denial...the day before surgery

2011-02-20T14:52:00.001-05:00

February 18th 2010
It was a brisk and blustery day in Manhattan but this trio from Upstate had big plans.....to put all worries aside and have an enjoyable, memory-filled day in the City.
With our city guide in hand and a fear of attempting a cab ride, we walked from RMDH to Central Park.

This picture looks like William thought we were out of our minds for these plans (or maybe he felt silly being in NYC with socks on his hands as mittens)!

The Park was picturesque, serene...

except William missed much of the sightseeing. After falling asleep on the ride, we devised a clever stroller cover with his beautifully handmade blanket and a couple toy links.

From Central Park, we ventured down 5th Avenue in search of lunch. What our guide book failed to mention was that this very swanky area of NYC does not have toddler-friendly (or even "average-Joe welcoming" restaurants). And so, we walked.... and walked in search of something....

We considering attempting street food, but William's expression made it clear he was not in favor of that idea.....he needed a full lunch feeding for himself.

After seeing a golden sign for "Trump Ice Cream Parlor" we figured we could have ice cream for lunch if it turned out to be the only thing we could afford at Trump Towers.

We ended up enjoying a wonderful lunch at The Atrium in Trump Towers, surrounded by posh and classy-dressed professionals. The location was perfect...we had a place to change William's diaper, I could nurse him and our pale, bald William was content his pajamas. He even thoroughly enjoyed some green beans!

William had his first trip to FAO Schwarz!

~ lots of smiles ~

By the time we finished at the toy store, the reality that surgery was approaching in just a few more hours started to set in...big time. I felt like I could have sprinted back to Ronald. Let me tell you, we made it back much faster than the walk to 5th Ave!

We gave William a nice bath....he just played and played!

Our night of fasting from midnight on was what we expected - sleepless! Grammy had taken the first shift. William was content snuggling with her in his swaddler.

Fortunately, Daddy and Poppie's train arrived on time so Poppie took over William-entertainment from 1:45am until 5am (when Poppie had to be relieved to shower and get ready). William slept only 20 minutes on Poppie's shift but was kept generally content walking the halls of Ronald. We kept him out of sight of Mama the entire time until we were all ready to walk to the hospital.

We left for the hospital at 5:45am, but by then, our little trooper was getting h-u-n-g-r-y and definitely over-tired.

February 16 & 17, 2010

2011-02-19T23:37:00.000-05:00

Grammy traveled to Manhattan with us for William's pre-op appointment. After Fred had strategically packed the call FULL for our anticipated 10-14 day stay, we were had good weather for our trip into the Upper East Side... Shortly before our approach to the George Washington Bridge, we received a call from the social worker at Sloan saying there was no room for us at the Ronald McDonald House. Just as I started to panic, she said the hospital would put us up in a hotel nearby until room became available at RMDH. She gave me a hotel name and address... and by golly, mom and I found it! We were so proud....that is until I entered the swanky lobby and the clerk told me we did not have reservations!

The social worker's timing couldn't have been better....she ended up calling me back before I could find her number in my contact's list. Ronald had one room available!

We settled ourselves and all shared a valentine donut. As silly as it is, this picture is so nostalgic of the days when William was a BIG eater!

William especially enjoyed nibbling on his beads at the Mardi Gras party in the cafeteria. It was mom's first experience at the House's cafeteria. You see so much heartache seeing all the sick kids.

Given our pre-op appointment wasn't until the afternoon, we had plenty of time to ventured around and give Grammy her first tour of our NYC stomping grounds. We did some shopping along Lexington Ave...hitting a book store (to pick up a NYC visitor's guide, of course!), a children’s clothing boutique (fun to look, but beaucoup bucks, holy cow!) and a great toy shop.

William was a good little explorer that day...all bundled up! You can tell he really likes the busyness of the big city.

Watch-out Upper East Side....its Grammy & William!

We arrived at the 9th floor of Sloan right on time for out 1pm appointment. William enjoyed giggling at the bubbling car in the fish aquarium, Grammy took in the sights of the "day hospital" and I stressed out with my many questions for the surgeon running ramped through my mind.

William had loads of blood work drawn, an exam by the NP and we proceeded with a meeting with the surgical NP, Angela. She described in detail what to expect from the surgery. She explained it is scheduled for 9am, so William would need to be there by 6:30am. Nothing to eat or drink after midnight (yikes...how would we get through the night....this boy is accustom to nursing nearly all night long!).

The surgery was expected to last a minimum of 6-8 hours and possibly longer, even 10 hours. Angela then gave a very detailed account of what to expect on surgery day. She began a realistic description of how William will look after surgery. He will be brought by ambulance to the PICU at Presbyterian Hospital (across the street from Sloan), since there is no pediatric intensive care unit at Sloan. He will have severe swelling, be kept on a ventilator for 2-3 days all while being kept sedated with his eyes taped closed, he'd have a chest tube and likely an abdominal drain in place. Then there are all the monitors, IVs and an NG tube to decompress his stomach. It was clear the team certainly wanted families well-pepared for what to expect.

Enter Dr. LaQuaglia....and every changed instantly. We went from a serious conversation to suddenly an intense, gut-wrenching one....
Dr LaQuaglia proceeded with a detailed account of the surgery he would perform. He reviewed William's CT and MRI scans, comparing the pre-and post-chemo images in a split screen. He pointed out areas of concern and described all the major veins and arteries involved as “swimming” in the tumor. There was a noted decrease in the size of William's tumor after the two rounds of chemo, however his tumor had finger-like protrusions still intertwined around vital organs, blood vessels and nerves, making William's a very complicated surgery. Dr. LaQuaglia also pointed out that the scans showed considerable calcification from shrunken tumor areas and a lot of inflammation, both of which complicate the surgery. He planned to put in an additional port line for blood transfusions.

Of course, we can't forget about the spot on William’s liver...after all, that was a driving force in the decision to do the resection at this time. The area of concern was not on the surface of the liver but inside the it. If possible, he would plan to do a core needle biopsy; otherwise a wedge biopsy would be required.

Dr LaQuaglia reassured us that William’s tumor was not the largest he has seen.

Thank God...that is certainly not the contest you want your baby be first in...

...but he did reiterate that William's tumor was a very large, complicated mass in a small body. He repeatedly discussed the risks and used the term "life threatening surgery."

Honestly, this is a position no parent should have to be placed in to make such a decision on behalf of their child....it is just not right... I felt numb every time I looked down at William, who by then had fallen asleep on my after nursing.

Dr. LaQuaglia kindly gave mom and I plenty of opportunities to ask questions, all of which he answered thoroughly. He stressed several times how involved William’s surgery would be, explaining that if the risk were to become too great, he would withdraw. In the end, the only question I could ask was, "Are you sure he is ready for this?....Is this really the right time? I mean, we are making this decision based on the information provided by you....is this really the right thing to do?"
Dr. LaQuaglia calmly nodded and quietly said, "I believe so."
Last but not least, they swabbed William’s nose to test for non-symptomatic flu due his runny nose, just as a final precaution. We could leave no possible source of complication unturned.

We left the 1pm appointment at about 5:30, our heads spinning...spinning..... with all the information....

William looked on intently as Dr.LaQuaglia explained his pre and post-chemo changes from the CT scans. For lack of better words, Dr. LaQuaglia is like a rock star in the world on Neuroblastoma....almost "god-like." Families travel from all over the world (no joke) to have him perform surgery on complicated tumors.

Dr. LaQuaglia insisted on holding William, played with him and made a true effort to bond with his little patient. With all respectfulness, this showed a lot as to his character, despite the intimidation factor and his well-earned bit of arrogance. Truly awesome....

Valentine's Day 2010

2011-02-18T21:08:00.000-05:00

Yes, you are reading the title correctly...Valentine's Day 2010.
Truthfully, Valentine's Day has never been a particularly favorite holiday of mine (that is before having kids and taking on the challenge of serving heart-shaped foods for an entire day!). Last Valentine's Day, we were days shy of William's resection surgery. Looking back, I knew I was scared beyond belief, there was so much on the table... especially since the team at Sloan was concerned with cancer involvement in William's liver.

Out of a last-minute fear of the worst, I asked a neighbor, Jaime Hill (who has uniquely become a friend through this experience), if she could take a few pictures of William before his surgery. She had done an amazing newborn shoot of William when he was 10 days old and family pictures in November, which turned out to be just a couple weeks prior to his diagnosis.

As it turned out, Valentine's Day was the day that just happened to work for her. She also recruited a friend of her's, Raine Dufrane to come and capture William.

These photos, the meaning they hold to us and the thoughtfulness and generosity of these two talented women remain incredibly close to my heart a year later.

~ William, nearly 9 months old ~

photos by Jaime Hill

His hair was just starting to grow back after chemo.

Jaime graciously gave us a beautifully framed print of this photo. Its hung in our entryway ever since.

~ photos by Raine Dufrane ~

Nicholas ~ 3 years 3 months

~ my most treasured ~

A boy, his Poppie and George

2011-02-17T23:09:00.000-05:00

January 24, 2011
We are so fortunate to have Poppie retired now and willing to come to our house regularly help. Through this time, we've been blessed with so many special moments, including this quiet Monday that Nicholas was home sick with the stomach bug.

William adores this toy just as much as Nicholas did around the same age.

He knows exactly how to make George work and follows his every move so intently.

William and his Poppie are just inseperable on "Poppie-days!"

The Highlight of our Hospital Days...

2011-02-17T22:53:00.000-05:00

I've always said that Nicholas is William's best medicine. This picture is only proof of that.

When we are hospitalized, Daddy and Nicholas come to visit around dinner time nearly everyday. With each visit, Nicholas fills the room with his energy and plenty of stories of his school experiences, a laundry list of tv requests (including Danger Rangers, even if its in Spanish) and sharing his request for "a picnic dinner in William's bed."

This evening, Nicholas arrived wearing his goggles, spilling stories of his repair jobs at home. When it was time for him to leave, he promptly put his goggles back on (yes, true Nicholas style!). He and William played kissy face, with each taking turns of laying a good one on the other.

Talk about priceless!

Mommy & William

2011-02-17T22:45:00.000-05:00

Some rare glimpses of Mommy and William time....

including Mommy's puffy, exhausted eyes....

but priceless, all the same.

Making Improvements

2011-02-17T22:44:00.000-05:00

January 14, 2011

By this point in his hospitalization, William was experiencing periods of feeling better. I treasure these pictures by Aunt Angela...especially this one.

The hospital cafeteria sells these giant rice crispy treats. William not only enjoys them like his Mommy, but he insists on holding the ENTIRE treat.

Don't even try to give him a smaller piece....he knows better!

Passing time with a little game of "Where is your....belly?"

This boy is well trained in the use of the hospital staff's Vocera communicators.

Yup, he knows he has to talk into it!

The Future of My Young Padawan

2011-02-09T23:00:00.001-05:00

Every now and then you see something that you just know will be in your future. That's exactly what I thought to myself after seeing this commercial.

Follow this link....

http://www.youtube.com/watch?v=hN41zcXJjmk&feature=player_embedded

Agree?

....and thanks Daddy for the "Padawan" education!

The Gallium Study

2011-02-09T15:04:00.000-05:00

January 13 & 14, 2011

A Gallium Scan was ordered to determine the source of William's infection and/or inflammation that would be causing such dramatic febrile episodes. The test was days in the making, or shall I phrase it days in the decision-making process by all the docs involved in William's care.

A Gallium Scan is a nuclear medicine test that uses a special camera to take pictures of specific tissues in the body. For this test, William was injected with a radioactive isotope tracer (gallium-67) on Wednesday through his central line. The tracer was absorbed in his body's tissues, bones, liver, intestines, organs and glands where inflammation or a buildup of white blood cells is present. After waiting a day for the absorption to occur, William was placed under general anesthesia for two hours in the scan machine. On Friday, after two days of absorption time, the test was repeated for another hour and a half of scanning.

Areas where the tracer builds up in higher-than-normal amounts show up as bright or "hot" spots in the pictures. The problem areas may be caused by infection, certain inflammatory diseases, or a tumor.

Being put under general anesthesia has become a routine part of William's life....unfortunately. After many difficult and traumatic experiences of being put under and problems with waking, I've taken an advocacy role in telling the anesthesiologists how we run being put under. We no longer to Versed...I refuse gas...we do it one way....and one way is the only acceptable way. I go to the location where William is going to be put under (sometimes an OR, in this case right at the scan machine), I hold him, they inject him with Propofol, he falls asleep, I lay him down, give him a kiss, tell the team to take good care of him and quietly leave the room. Its the only way that works for us....and I have to say, its been working well for months now.

Seeing all the "caution: radiation" signs on the doors of the room where I just left my baby puts the whole scenario into perspective.

Here is just one of the 287 images from William's Gallium Study. I have to say, its rather freaky to see these images. It reminds me of an alien laying there....not my beautiful son. if only this entire experience was being perfromed on an alien...instead of our William.

In the end, the 3 1/2 hours of scanning under anesthesia, over a 2 day period was found to be negative/normal....and did not give us any more insight into a cause... except for the fact that William did not have an obvious infection or area of inflammation at the time of the scan. I only feel it necessary to share that this test was done after William had been on Zosyn (a broad-spectrum antibiotic) for a week and a half, Vancomycin (the infamous "drug of last resort") for 5 days, an antifungal for 3 days and over a week of anti-inflammatory meds. I guess we will never know if the source of infection/inflammation had improved with the treatment prior to the test, if there was never a source of infection/inflammation or if the test was even a waste of radiation exposure, time under anesthesia, additional trauma to poor William, unnecessary cost to our insurance companies...and a whole lot of stress for all of us with care so deeply for William.

Sleeping beauty....with crazy hair!

2011-02-04T22:40:00.000-05:00

January 13, 2011

Classic William

2011-01-30T22:27:00.000-05:00

When this little tike isn't feeling well, he's content just to stay cuddled on Mama....no matter what Mama is doing...

The Ups & Downs of the Hospital

2011-01-30T22:08:00.000-05:00

Around Day 5 of this hospitalization, William started to experience blood pressure concerns. There were times his BP's were in the upper 140's over 80's and 90's....high numbers even for an adult....and a definite concern for a 20-month old. At one point, a SWAT nurse from the PICU was called to assess William's blood pressure. She spent well over an hour checking each extremities BP, all his pulse points, manual BP's versus using the machine....poor William was just put through the BP ringer!

Another 3 days of absurd blood pressures and a consult with nephrology later, William was started on isradipine, a blood pressure reducing medication. He responded well to the med, but still hated getting all those constant BP's taken.

~ plenty of snuggle time in the rocking chair ~

Talking on the phone is always a highlight in William's world. He certainly enjoys it....we just feel bad for the person on the other end who has to constantly talk, despite not hearing anything but an occasional "hmmmp" and a lot of heavy breathing from William.

Oh, and did I fail to mention his love for pressing buttons.

William's birthday cake toy is a favorite and has proven time and time again to be a hospital necessity. He's so cute when he points to who he wants to sing Happy Birthday to.

The hospital experience

2011-01-27T23:39:00.001-05:00

At times, it seems as though poor William is just constantly assaulted non-stop when in-patient. There's vitals checks every 4 hours (around the clock), med administrations, visits from nurses, nursing shift changes, exams by medical students...pokes from residents...full exams by specialists....not to mention the long-awaited visits from his attending doctors. Especially as in William's case with so many specialists on his team, our room needs a revolving doorway. On top of all that, we still have his general daily and weekly care needs, like dressing changes. Even when we are in-patient, I still do William's dressing changes. He is much more comfortable with our system and frankly, the control freak I am....I am more comfortable with the arrangement too. The nurses assist as the ""distractor/hand control role."

William's expression says it all here after a central line dressing change...

William has some nurses who he's established a special bond with. Many staff members stop in even when they are not assigned to William for a particular shift, just to check-in, say hi....and in hopes of getting a William smile.

Another hospital band to add to the collection.

All through his dressing change, I kept William content by telling him he was going to have a tubby. This was the afternoon that his central line clotted off. Although it was an incredibly scary experience to think we did not have IV access for all his critical fluids and medications (and the looming threat of needing a peripheral IV)....I have to admit it was nice to have a brief break from being attached to a 4 1/2 foot IV line attached to a big, bulky, obnoxious IV pole.

Of course, that night I also forgot that William had just undergone bilateral bone marrow aspirations in the fronts of his hip bones. He had dressings over them, which could not get wet for 48 hours. Thankfully, our foot stool made the perfect seat for little man to sit on and get in some water play and fun with bubbles.

Touches of home at the hospital...

2011-01-27T23:14:00.000-05:00

My sister came to town during William's last hospitalization. She captured some amazing photos of the hospital experience that I feel convey part of the emotions behind life in the hospital... and the ups and downs William continuously faces.

With every hospitalization comes a different room... a different view... and a slightly different room arrangement...

but we always seem to bring the same amenities from home...

my favorite touch from home ~ our picture collage on the bathroom door, always

there's of course, the not-so-welcome, but ever-so-necessary hospital accessories...

Somehow, William eventually settles in to each room. We always bring 2 comfy blankets from home so to have one clean at all times (yes, we do LOTS of laundry while at the hospital!). This time around, William literally sighed and reached out his arms toward his snowman blanket. It makes you remember that sometimes, its the little things that make the greatest differences.

Under the weather

2011-01-22T23:25:00.000-05:00

I gotta tell you, I have two tough boys. Nicholas is just not one to ever complain. He's always been that way. He doesn't complain when he's hungry, hot, cold, tired...or sick for that matter.

Even at 4 years old, he doesn't even mention a stomach ache....yup, not once...not even right before yacking at midnight!

As yucky as I'm sure his belly and body felt today with still running a fever and hardly an appetite, he never complained, but merely enjoyed a Mum Mum and cup of Pedialite while watching tv this morning.

Happy 20-Month Birthday

2011-01-22T23:13:00.000-05:00

Last year at this time, William had recently completed his second round of chemo to shrink a massive neuroblastoma tumor consuming his abdomen. Today, at 20-months old, he's a busy, very active, generally content and flourishing toddler. He is literally learning new things everyday - he's definitely in a growth burst!

These days, William is in to everything! He totes around the same stool Nicholas used to travel the house with (and still does). He plops it wherever he wishes and usually gets into trouble of some sort. The other day, he was wearing a hoodie. After splashing at the sink a bit, I told him to take off his hoodie so it wouldn't get wet. He carefully unzipped it, tossed it to the floor and said, "Hunhhh!" (his version of "ta-da!)

I captured his expression of full pride!

...and then he was right back to splashing in the dish water!

Will just loves his 4-Wheeler Christmas gift from Grammy and Poppie. Daddy has been cringing with William's driving skills in the house, mainly his lack of steering skills (minor problem). Just within the past few days, William has learned to drive, make his usual crash, then get off the vehicle, re-adjust and continue on his way. Good job, buddy!

William is communicating more and more everyday. While in the hospital last week, he thoroughly impressed the staff with his incredible awareness and knowledge of medical things. He knows exactly what to do for blood pressure checks, he waits for the cuff to deflate and then peels off the velcro, he can thread a thermometer sleeve onto the narrow thermometer, he places the thermometer under his own arm (and will even take Mommy's temp, but he prefers a cleavage reading), William puts a stethoscope to his own heart, he finds an alcohol swab and attempts to clean his central line claves and can operate the hospital remote control incredibly well, including knowing how to call the nurse, cancel the nurse call at the wall display and can operate the lights and tv on request.

Since our discharge earlier this week, William continues to be on IV antibiotics (Zosyn) and will be through the end of January. This means we have to run his antibiotics every 8 hours, every day, around the clock. He is tolerating all this accessing very well and is even voluntarily laying down for us when we approach him with the supplies. He's making attempts to say many of the items we use on a daily basis, such as "tape," "flush" and saying "ga" for "go" when I turn on the pumps.

William now loves having books read to him. He shares many of Nicholas' old favorites, including Curious George (especially George Rides), Wheels on the Bus and Karen Katz books. Will loves being sung to and is now making recognizable efforts to sing his favorites, Twinkle Twinkle Little Star, Happy Birthday (and blows out his fingers at the end) and I Love You, You Love Me. He has started to initiate the "where is your...." game. As he lays for a diaper change, he starts making exaggerated gestures and pointing at his favorite body parts until I respond by asking him, "where is your..." He gets all giddy when he's asked where are his eyes, nose, teeth, tongue, toes, socks, pants, fingers, thumbs, hair...each playing of the games just makes him glow!

William gives the best kisses! He is very attentive to greet everyone with a little wave, an adorable smirk and a blown kiss at departure.

This boy is so lovable and social. He follows his big brother around and just takes in everything Nicholas does. You can already see the deep admiration he has for Nicholas, it just melts my heart. On the flip side, Nicholas is already complaining, "William, leave me alone!... I'm playing with this!...Go away! You're too little for my toys!"

Medically speaking, William continues to be a very complex case and he seems to baffle doctor after doctor. He is celebrating 11 months of being cancer-free, but remains ever-so medically fragile due to his complex gastrointestinal problems. William remains fully dependent on all IV nutrition and hydration sources and is attached to an IV pump for 16 hours every day while at home. He is given some medications through his central line and others through his j-tube into his small intestine. William is showing more interest these days in exploring foods. Just today he ate 4 blueberry baby puffs and was interested in allowing a piece of pastrami and cookie to his lips for a quick lick. These times, are celebrated, since he can then go extended periods where he refuses any sort of food even near him.

Exhaustively, I have to report that William's sleep disturbances continue. Now at 20-months, he continues to sleep very, very little and requires extensive soothing to settle to sleep. He is still rocked to sleep for every nap and bedtime. This is an exhausting, daunting task, each and every night. It can sometimes take a half hour or up to 2 hours if he gets his "second wind" after a 20-minute power nap or is disturbed when I attempt to move him to his bed. In the 5 nights we have been home, I have slept all of 5 hours in my own bed. The rest of the time has been with William, in his suite in the guest room. Because it is so difficult to lower him in his crib with all his tubes in position and with him still sleeping, we now have William set-up in the middle of the queen-size bed in the guest room, with pillows surrounding him. He continues to wake multiple times a night, naps minimally (sometimes only a half hour a day) and always wants his Mama in arms reach.

All in all, William continues to amaze us all with his ability to preserve through such pain and trauma, yet be the happy, typical toddler he is. So much of what William has been through has sadly become his norm....all that he knows. Its been a difficult reality for him and for us to experience... but his smiles and love make it all worthwhile.

He truly is our miracle.

The Joys of Daily Life

2011-01-21T23:38:00.000-05:00

Tuesday January 18, 2011

After a long, frustrating hospitalization, you really appreciate the simple joys of being home.
While William was pushing his doll around the house, a wheel popped off. Big brother ran to the rescue to repair it. He set-up an elaborate "lift" system (a dinning room chair).

He kept explaining to me he needed to work "from under the broken problem...that's how it has to be done, you know."

William took notes from a comfortable distance. Of course, he was happily moved on to something else....ahhh, the attention of a 19-month old.

Another minute later, he was giving me his little "hmmmp" asking to color.

William's latest fascination is carrying around the stool to play with the light switches.

I have to give him credit, unlike his big bro, William is excellent at leaving the lights off after his night club act.

This first week home has been a whirlwind. I have to say, Nicholas is very happy to have us home. I think we played with every toy in the house, talked non-stop (like only Nicholas can do!) and survived on eating fun snacky, junk foods for every meal (ummm, did I mention we've yet to make it to the grocery store).

Home Sweet Home...

2011-01-17T23:20:00.003-05:00

We are home.

Yes, home sweet home.

After a long 12 days hospitalized,
6 days of high-spiking fevers,
an abdominal CT scan under anesthesia,
loads of bloodwork, a peripheral IV draw,
a painful sterile bladder catheterization,
an abdominal ultrasound,
4 days of blood cultures,
5 urine bag catches,
a dozen nights of Mommy & William sleeping in a cramped hospital crib,
2 liver doppler ultrasounds,
a scary bleeding stomach and j-site for three days,
the realization of the wonders of Toradol,
a special 5-day visit from Aunt Angie,
uncountable assaults by nurses, residents and specialists at all hours of the day,
consults with 3 Infectious Disease physicians,
one very scary Sunday night,
a clotted central line and an emergency TPA clot-buster crisis (which fortunately worked after a 2-hour dwell, thank god!)
3 nights of vital sign monitoring,
an injection of radioactive gallium,
two days of nuclear scanning under anesthesia,
bilateral bone marrow aspirations with bone marrow cultures,
12 days of round-the-clock attachment to an IV pole,
dozens of blood pressure checks on each and every extremity,
an unknown appearing and disappearing rash,
countless laps around the 11th and 12th floors of the children's hospital,
a brief Reiki session
dozens of freebie samples of mint ice cream from Cold Stone Creamery,
numerous mistakes made by hospital staff,
plenty of William kisses blown to nurses and other "babies"

....a mile-long list of conditions that have been ruled-out NOT to be the reason for William's fevers and still no answer for the fevers....yes, we are out!
Finally... out.

Nicholas, Aunt Angie and Grammy welcomed us with a precious banner.

We celebrated this afternoon with a cupcake party!
William poked his, with an occassional lick of frosting.

Nicholas gobbled up his cupcake, yakked up a storm the entire time in his super-excited "outdoor voice" and spontaneously got the three of us engaged in a Nicholas-original game of hang gliding, using laundry baskets held over our heads while wildly running around the house.

Oh yes, and William just had to have some coffee to celebrate!

Thanks Grammy for the replenished decaf supply!

Play with your children...its the best investment you can make

2011-01-01T22:37:00.002-05:00

Sunday December 26th
We enjoyed a wonderful afternoon at Grammy and Poppie's with cousin Dillon and Evy, Aunt Angela and Uncle Jim sledding in the neighbor's yard. Nicholas was psyched to try out his "new red sled with the brakes from Santa."

William had a blast going down double-style. He giggled in delight!

Go, go, go Dillon!

William always seemed to be on a sled with someone. We took turns going down with him and carrying him back uphill so that none of the adults would have a heart attack. Notice his eyes are telling us where he wants to be!

"Ready, set....GO!"

If Will could talk, I think he'd be saying, "these pictures are only holding up my fun!"

Our sledding spot was just perfect for our 4 and under crowd!

Little Evy was all bundled up and having fun too!

A push from Poppie!

Santa brought this great sled for William. This picture has such a fun memory behind it. It was taken the split second before William flipped in the thing....like he did with every attempt to pull him up the hill in a ride.

Look who's ready to go again!

Dillon tried time and time again to get momentum in the baby sled. He was so darn cute...all packed in with the reins in hand...only for a big disappointment. I give him a lot of credit for his innocent perseverance.

"Umm, I'm waiting!"

Sledding Crew 2010!

Thank you Aunt Angela for capturing all the great memories!

Welcome 2011

2011-01-01T21:48:00.005-05:00

“It is difficult to say what is impossible,

for the dream of yesterday

is the hope of today

and the reality of tomorrow.”

Robert H. Goddard

There is no simple way to sum up our experience of 2010. With William admitted for his 14th hospitalization on December 28th through the afternoon of the 31st, his true courage and perseverance is ever-most visible. This picture was captured just after he pointed to the stroller, requesting to go for a walk around the unit. It was the first time he was feeling up to leaving, after a long 36 hours of feeling lousy.

I've lost track of how many blood transfusions William is up to...but even while receiving yet another transfusion, you'd never know how sick he is with his glowing smile and spunk.

A rare snapshot of Mommy and her #1, as we enjoyed a New Years dinner at Great Northern Pizzeria.

Be-bopping to the restaurant music, William shows off his highchair dancing skills...always pushing the limits, that boy!

I can only begin 2011 with hope for a better year....
for joy and peace for our family...
the strength and courage to move forward...
and better health for all our dear loved ones.

My Christmas Gifts

2010-12-27T23:56:00.003-05:00

William's bathroom discovery...

2010-12-20T23:39:00.000-05:00

Lately, William has been toting around a stool, only to plop it on the floor and access new heights....always involving some sort of interest not indicated for someone his age (naturally, of course). Well, it was bound to happen...William got into the bathroom, discovered he could operate the faucet, and...well....spent the afternoon there!

Its moments like this that make it all worth it

(including William's guaranteed crying through dinnertime).

awwww, my boys!

My syringe helper

2010-12-20T23:32:00.000-05:00

Let's face it....syringes are everywhere in our house. We have saline syringes coming out our ears, heparin-filled ones, ethanol syringes, sterile, empty ones, huge Toomey syringes....and a small stock pile of Target prescription syringes. For months, Nicholas has been my side-kick syringe fetcher. Even as far back as last spring, I could send him to our stash in William's room and get me 2 salines and a heparin. Sure enough, he knew exactly what I was talking about.

Lately, Nicholas has taken a big interest in the numbers on the sides and what they mean. Now, he even pre-fills William's penicillin syringes for me. He is such a good helper. There are times I don't know what I'd do without him!

First Storm of the Season

2010-12-10T23:11:00.000-05:00

Our first storm of the season was a doozy!
41 inches over a matter of three days....there's nothing like life in central NY.

The pictures just don't do it justice.

Our path from the previous day was nearly buried.

William meets snow!

2010-12-10T23:06:00.000-05:00

With all our snow,William had his first-ever experience with the white stuff! I think he thought I was nuts for bundling him up so much. By the time he was finished, he could hardly walk. He beamed as he climbed out of the house, following his big brother. He walked haphazardly down the driveway and promptly took a face-plant at the end.
His reaction here shows it all...

"yuck...what is this stuff?!"

This expression captures William. He always has to look at whatever hurt him and give it a pitiful, dirty look. I love it!

Poppie makes it all better!

The slide is fun in the summer...and even more exciting (and dangerous) in the winter!

Look at that smile!

Priceless fun!

William loved his snowy experience so much, he wouldn't look at me for a picture. He was so upset when we came in. The following day he threw a big-boy tantrum, even repeatedly threw his winter coat at me when Nicholas had gone back outside and William wasn't. Needless to say, we all ended up outside the next day before 9am!

Nicholas' First Snowday!

2010-12-10T22:23:00.000-05:00

We got our first storm of the season and Nicholas was psyched!
He's been asking when it was going to snow "a real lot"...and boy was his wish granted! He ended up with a school delay on Monday and two snowdays following.

With over 41 official inches, the snow was easily waist high.

Has anyone seen Nicholas?

My new meaning of December 7th and Resilience

2010-12-07T23:58:00.002-05:00

All my life, December 7th had no special meaning or importance to me. The same held true for my family...yes, we pay tribute to it respectfully as Pearle Harbor Day, but for the most part, it was just another day...a day often busy in anticipation of the upcoming holidays, but in the end...just another day in December.

That held true until December 7th 2009 when it was confirmed my 6-month-old baby had an aggressive form of cancer that had forcefully grown in his innocent little body. Much to our dismay, and following months of my attempts to seek the proper diagnosis for William, this nasty, unwilling demon had already grown to 10 centimeters and completely filled portions of his abdomen - shoving aside the organs that should have consumed that space and encased nearly all vital blood supplies and nerves of this very critical area of his body.

Our lives, had we grown to know them to that point, halted within a matter of a day of learning a mass was found... to hours later with the confirmation it was cancer.

The experience of the past year has been an unimaginable nightmare...one you just can not wake from. At times, it has seemed like a Groundhog Day affect - the same testing day... over and over...

The past year has been an evolution of interventions...one that has often been difficult to sustain, frustrating to navigate, a roller coaster of emotions, purely exhausting through and through....and only reconfirms that we as humans just do not have all the answers. From the process of diagnosis, chemotherapy, a life-threatening resection surgery in February, approximately four months hospitalized, countless doctors appointments, multiple serious central line infections, five surgeries, handfuls of invasive diagnostic tests, four rounds of full-body cancer scans, five months of uncontrolled vomiting and 10 months of total parenteral nutrition (IV nutrition)...(I'm loosing count of things), but needless to say, it has been one challenging year.

Fast forward now to a full year later. William is now 18 months old. He is bigger, more active, stronger, more developmentally advanced, is able to do just about all the things that other 18-month olds enjoy doing....he is learning new things every day....he is the sweetest, most lovable little guy you could ask for...

but....

his life is just different than all the other 18-month olds you'd ever know.

And as much of a tremendous success it has been to achieve "no evidence of disease" from the cancer perspective, in many ways, William is much more "ill" today than he was a year ago. I know this sounds terribly ironic, selfish...even inaccurate to some....but in a sense, this is our reality. William now has multiple serious risk factors that he carries, that truthfully, were not even a consideration a year ago.

To top it off, this little amazing boy has been through more than any adult we all know has been through. He has lived with pains beyond what we can imagine. He has literally been medically assaulted for the past year. For a full year, he has lived with a plastic catheter tube coming out of the center of his chest to which he receives his life-sustaining IV fluids through for 16 hours a day. He has a large dressing bandage over this site that is changed at minimum once a week - during which his little active arms are held down so not to contaminate the sterile field during dressing changes. He has a plastic "button" in the middle of his abdomen of which is opened and yet another tube is "plugged into" that delivers fluids to his gut.

William is attached to tubes and a pump all day long - everyday. He has to carry around a backpack with his pump and fluid bag whenever he is playing, whenever he is exploring his world like little 18-month olds should be...and when the pack is not on his back, it is right next to him with the subtle hum of a battery-operated pump. It is there in the car next to him, at his highchair during mealtimes, hanging on an IV pole next to him when he is sleeping...all the time.  William is given multiple medications 3 times a day, whether he wants them or not. He suffers from multiple explosive episodes of diarrhea every day. (Now if you know me well, you know I'm not one to use the word "suffer" often. In this case, that is the only word that properly comes to mind.) William typically goes through 3 full outfit changes every day because of this diarrhea problem. Anyone who has recently changed an 18-month old's diaper knows how much they hate the process at that age.

A year later....
I treasure many things I am thankful for. First and foremost, I am forever thankful for the love and support of my family and close friends who have been there for us.  My meaning of "family" and "community" have forever been broadened to understand that life is not about making your own little piece of the world your own, but rather is reliant on the love and support of others to be there for each other. We each have our own skills and talents - it is when those come together to help each other that we are all most fulfilled in life.

I am thankful for Nicholas. He has been a huge motivator for me to slap on the happy face everyday and to forge ahead as if things are not as difficult as they often feel. He gives me a reason to smile and laugh everyday....(and often many other emotions as well, some not so easy to handle, but still necessary to keep things in perspective). He bring tremendous joy to William as well. Their laughter together is the greatest of medicines, beyond anything modern medicine can provide.

I am thankful for our ability to successfully seek and secure the best possible treatment for William. I am thankful for the resources we have been blessed with that have made much of these possibilities afforded to us.  I am thankful for my own background knowledge in the medical field that has given me some support through the seas of medical terms and becoming the best possible advocate I can for William.

Through all of this, it is often difficult to not think from your own perspective. How hard something is for us to manage, how difficult it is to wake every day and face the realities the day is bound to bring, how hard it is at times to deal with life's little stressors...or the big ones for that matter....the disappointments, the interpersonal challenges with friends and family, dealing with your own intrapersonal struggles...but in this case, we need to stop and think from William's perspective. One thing is clear... this little 18-month old is the resilient one.  He is the one who is positively coping with this adversity that consumes his life...and doing it with one big smile!

“What lies behind us and what lies before us are tiny matters compared to what lies within us."

Ralph Waldo Emerson

Waiting for big brother

2010-12-05T21:37:00.000-05:00

When I open the door in anticipation of the bus arriving for Nicholas' delivery, William and Zoey are the first there waiting. William is like our little neighborhood watchman...

but of course, the cutest possible watchman of all!

Legos Mania!

2010-12-05T06:34:00.001-05:00

Nicholas got his first Legos set for his birthday. He loved following the directions (with assistance) to build the rather complex rescue set... and did so rather impressively.

As the child of two parents who were Lego-crazed as children, this is sure to be his first set, but certainly not last.

The magic of the season...

2010-12-04T22:52:00.000-05:00

William flipped the switch for the Christmas lights...

and was in complete awe...

December 4th 2010

2010-12-04T22:34:00.000-05:00

December 4th...the day is here.
Despite wishing I could forget the meaning of this day and recalling every bit of what transpired last year starting with our admission to the hospital on the 4th, it can't be forgotten. I remember the entire day like it was last week (well, honestly, I remember it better than a day last week, or even yesterday for that matter - strange how that can happen).

Coincidentally, one year later, we attended the annual Upstate Hematology and Oncology Holiday Party. Although we did not see any of the other families we've befriended through this experience, we enjoyed seeing many of the nurses and doctors outside of the hospital walls. We met the staff's own children (who we've so often shared many stories about) and all quietly treasured watching William on his little adventures in a place other than hospital confinement hooked to an IV tether.

Within minutes of our arrival, William scouted-out the indoor pool. Forget enticing him to try anything for lunch, this boy was glued to the window. He is such a water-baby....I promise him we will take him to the best indoor waterpark as soon as his central line comes out!

They had a lot of crafts for the kids. The boys each decorated a hat - Nicholas a Santa hat and William an elf. He was insistent on keeping it far down his head - it was so stinkin cute!

William readjusts after a Mommy-attempt to be able to see his eyes!

In the end, William had pink cheeks from shaking a leg on the dance floor and was one happy boy having found a tiny bottle of bubbles in his gift bag!

Watch out!
The Relyea boys kick it up on the dance floor. Watch how William shakes his hat to make the bells jingle and Nicholas...well...he's just plain silly!

Someone's a little excited for Christmas this year!

2010-12-04T21:49:00.000-05:00

Saying Nicholas is pumped for Christmas this year is an understatement. I think he's actually more excited to decorate the house than he is about Santa coming. He tells me, "Mommy, me and you can do all the decorating...I will help you and you will test the lights for me...and I will put the trees together for you. We need lots of decorations and lots of lights...oh, and we have to decorate the outside of our house too!"

I have to admit, his help to put together the memory tree was rather impressive!