Monday, December 27, 2010

My Christmas Gifts

Monday, December 20, 2010

William's bathroom discovery...

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

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!

Friday, December 10, 2010

First Storm of the Season

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!

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!

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?

Tuesday, December 7, 2010

My new meaning of December 7th and Resilience

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 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 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...


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

Sunday, December 5, 2010

Waiting for big brother

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!

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.

Saturday, December 4, 2010

The magic of the season...

William flipped the switch for the Christmas lights...

and was in complete awe...

December 4th 2010

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!

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!


Sorry Grammy

Poppie's moto "anything for my William" drives him to given up his cell phone at a little hand raised with a ""hummh" requesting it...even if it results in leaving poor Grammy hanging on the phone forever.

Friday, December 3, 2010

"Is that William?"

This afternoon, Nicholas was snuggled up beside me as I was checking my email.  Along the right column of hotmail was an ad for St. Jude's with a picture of a bald, pale child.  Nicholas pointed and said, "Mommy, is that William?" 

Words can't describe the feeling that came over me.  I immediately became choked-up and even struggled to get the words out of my mouth, "Oh no honey."  Well, my intuitive Nicholas didn't seem to believe me....he awkwardly paused and said, "Well, who is it?"  I said, "Just a little boy." 

As soon as the words came off my tongue, I noticed the text in the ad, "her New Years wish."

I instantly felt a lump in my throat.

All day, I continued to think about this interaction with Nicholas.  It bothered me but yet I couldn't pinpoint why it had so greatly upset me. Days later and many more hours of reliving the conversation, I've come to the understanding that its the realization of no matter how much you genuinely want to put the whole "cancer" experience behind us, you can't.  Period.  Its forever changed each and every one of us...even Nicholas at just 4-years old....its changed how we see the world, how we interact with others, our priorities, our values... and how even just a simple internet advertisement can make us feel in an instant.