Saturday, September 11, 2010

Oral-Motor Success!

Despite not eating anything orally, William joins us at the table for all mealtimes.  Within the last few weeks, he has shown a dramatic interest in playing with food and sometimes even bringing things to his mouth.
He liked mac & cheese a lot!
He always insists on having a utensil in his hand and usually squawks until I hand over my bowl or plate.
Do I even see a cheesy finger in his mouth.....yup!

 
Grammy has been doing her own oral-motor research and brought William a stash of cheese doodles.  Sure enough, he liked them.....
a whole lot!
You may be wondering why Nicholas is in William's highchair.  Let's just say he insisted...he's always up to something!
Love that cheesy moustache!

Make A Difference!

There's one really easy way YOU can make a difference for many children and families faced with cancer.  Even better, it won't cost you anything, except a couple minutes of your time....that's it!

Pepsi is giving away millions of dollars to fund great ideas through the Pepsi Refresh Project.  I have a "GREAT IDEA" for you to vote for!

Arms Wide Open Childhood Cancer Foundation is a foundation founded by a Neuroblastoma mother who's son received treatment at Memorial Sloan-Kettering.  The foundation is working closely with scientists, researchers and doctors who are pioneering the Neuroblastoma field.  The goal is to bring alternative therapies that could prolong the lives of children diagnosed with Neuroblastoma until a cure is found. Right now only 30% of children diagnosed with Neuroblastoma will survive.  Neuroblastoma is considered an "orphan" cancer, so research funding is limited as pharmaceutical companies do not see the efforts as profitable.

Recognizing that children should not be viewed as a profit, but rather our investment, Arms Wide Open raises money for alternative therapies and actual treatments these children so desperately need in order to survive.

You can vote all three ways, every day through the end of September.  The cause has to reach the top two positions in order to win the prize money.

1.  Text : PEPSI (73774) and then Text 102653.  
     There are no additional charges for text voting (only standard text messaging charges)


2.  Vote on Facebook through this link:  Arms Wide Open

3. Vote online using your email address:  Arms Wide Open

Please take a minute to vote as many ways as you can every day this month!  Help the Foundation fund life-saving treatments for many high risk neuroblastoma warriors who have few other treatment options.

Friday, September 10, 2010

Another Day in the Life of William...

September 8, 2010
Today was a long appointment day for William.  First on the list was our 8am check-in at the hospital.  It's sad when you feel like you've made friends with the secretaries at Patient Registration, but thankfully our friendly Sandra was working at the main desk, so she gave us our 'easy pass' and we breezed through registration, as she said, "this poor boy just shouldn't have to be here all the time."

Poppie joined us for Part I of the morning, so Daddy could get Nicholas to pre-school. By the time we made it to Diagnostic Radiology, William seemed to sense something was about to happen.  His expression says it all...he is definitely picking up on this whole hospital thing.
8:30am - Upper GI Series
It's hard to even know where to begin when reflecting on the experience of a difficult procedure for your little one.  In March, just after we arrived home from NYC, William had an Upper GI that confirmed the gastric emptying problem/pyloric stenosis.  It was literally one of the worse hours of my life.  At the time, he was eating nothing by mouth...nothing....so they had to put an NG tube up his nose and down into his stomach to then syringe in radioactive barium into his stomach.  William was gagging and fighting terribly.  After every few cc's of fluid he'd do a huge purging of the fluid....sometimes even out his nose.  The whole experience seemed to drag on and on.....pinning him to the table (requiring three people), fluids pumped in, a few pictures, a vomit....oh, now we need more fluid in.....repeat the process because the fluid was not in him long enough to pass out of his stomach (where they were expecting the problem to be at the pylorus area).

I was disgusted in the fact that this test was even necessary to repeat.  The last one was incredibly traumatic for both William and Mommy.  I discussed my concerns about another Upper GI in depth with Dr. Ratner last month.  He completely agreed it was not necessary to put William through that experience again.  Well, apparently either he forgot our long phone conversation one Sunday afternoon or he just didn't have the guts to tell me he was ordering another one.  Trust me, I put up a fight to avoid this....and once again, lost.

This time around, I told the technician I was not going to allow for an N-G tube placement....I would get it in orally.  (Some confidence in me, right?!).  We got all suited up - everyone in the room during the procedure has to wear a leaded gown...just another thing to make you feel like you are in purgatory...they are so heavy and hot!
In the end, this time around was not as bad as the first experience, but still way too traumatic than any 15 month old needs to be put through.  Provided a patient and understanding radiologist, a bottle, a straw, 2 different sized syringes and many hands to restrain William....we some how got in enough contrast and barium to complete the test.  William was COVERED in a sticky mess...in his hair, drenched his onesie and coated in his chin rolls.

Poor baby, he needed plenty of cuddles after it all.

After a debacle with trying to have William's weekly TPN labs and the necessary pre-op labs drawn at HEMOC,we ended up being an hour and a half late getting to our second pre-op appointment with Dr. Ratner.  Seeing William happily climb on and off the step for the exam table, you'd never guess he had been through so much trauma earlier that day.  His resilience is truly unbelievable!
For the first time ever, he got super excited for a Safety Pop treat when leaving the office!
Dr. Ratner drew me a picture explaining his two surgical options.  It appears that he has either put a lot of thought into William's case since our last consultation in August or he's done some research.  The black lines represent the GI tract...the esophagus coming down from the top, leading to the stomach, the narrow pylorus area exiting the stomach and then the small intestine.

Plan A (the Preferred Plan):  Dr. Ratner will re-route William's small intestine (shown in green) by creating a bypass around the pylorus and a new exit point for the stomach to empty into the intestine.  If this is done, a G-tube (shown in yellow) will also be placed to allow for feedings directly into his stomach.  This will help in transitioning him back to orally feeding, since it will enable his stomach to experience the sensations of filling and emptying.

Plan B:  If Dr. Ratner determines there is too much involvement/complications for Plan A (such as due to excessive scar tissue adhesions, inflammation or damage from the resection surgery), he will merely place a J-tube (shown in Red) further along into the small intestine. 
Fingers crossed for Plan A!

Thursday, September 9, 2010

First Day of Pre-K for Nicholas!

My first baby has officially started Universal Pre-K!
The day before Nicholas' first day, I spent nearly every minute of my available time to writing a letter to his teacher and director of the program that started with, "I'd like to take this opportunity to share a few things about Nicholas and our family that I feel are important to know..."  I have to wonder how many other parents were compelled to do the same.  Yes, our life is a little different than most....just a little.

This milestone for Nicholas brings so much change for our family.  Since Nicholas was pulled from his 3-year-old program last December when William was facing chemotherapy in the middle of flu season, he has really spent nearly all his time by Mommy's side (that is when Mommy is not stuck in a hospital with William).  I have so many fears entering this new situation:  the obvious relating to infection exposure coming home to William, the logistics of me getting Nicholas there everyday (since our mornings are already so hectic),... the fact that Nicholas will surely be one of the youngest kids in his class, if not the youngest.

 Then there's all the other things swirling through my fears.   Nicholas is a very sensitive child, a touch shy and definitely picks up on many details, almost in an intuitive way.  He gets upset on the few occasions that just he and I go out to do something.  He demands, "but what about William?  Why isn't he coming with us too.....Mommy, Nicholas and William."  Then when we're out without William, he is sure to report to anyone who seems willing to lend an ear..."My little brother William is home right now...."

As much as I'm looking forward to this time apart for us, lets face it - he needs time away and I need some time without him, its still hard to think of us being apart for so much of the day.  All we can do is try it and see how it goes.....my new motto.

So, we headed off to Nicholas' first day at Learn As You Grow.  I attempted pictures of him at the house, but he refused.  He told me, "not until we get to the school Mom!"  After a battle with William to get him secured in the hip hammock, his IV backpack hung over my shoulder, the camera around my neck and a near bribe to get Nicholas out of the car.....we headed toward the building.  Other parents were snapping pictures of their cute kids posing.  I pumped up my Nicholas, "Okay honey, your turn!  Let's take a picture to remember your first day!"

ta-da!
Ya know, last year I would have been disappointed, but this year.....hey, just us getting to this point is an accomplishment.  Not to mention, his expression says it all...that's my Nicholas, through and through!

Later in the day, I got another true Nicholas expression...
My favorite is definitely this video clip.  Yes, that is him running off the bus (completely exhausted he can barely walk straight) saying, "Mommmmmie, I'm home! School was great!" even before he is off the bus.

video
First day - a success!

My slightly-broken, definitely-bruised heart...

Tonight I went to my first cancer moms support group meeting.  Its nothing official, just a group of moms who get together once a month for dinner and to chat.   The table was filled with very intelligent, strong, passionate, yet exhausted moms - all with their own unique stories.  As much as its sad this has become my new "me time"...hopefully I will pull off getting out of the house once a month to meet up with these new friends, I definitely see that this involvement is necessary.  I hope to gain more information that only other cancer moms can provide and gain strength from their compassion.

One mom recently shared the following in an email to the moms group.  It was actually written by a mother of a son with Autism.  Despite how different autism and cancer are, the fundamental feelings experienced by the parents of these affected children is so much the same.


Hello doctor, I just need to warn you... 

Please, tread carefully.

You see, what you might not realize as you look at me, talk to me, tell me your opinions, our options, our lack of options, and your predictions of our outcomes is that; well ... you see that heart?

The slightly broken, definitely bruised one?

Yeah, that's my heart.

My slightly-broken, definitely-bruised heart.

Now, I realize that as you look at me you might see .... a confident parent ... or an angry parent ... or a happy-go-lucky parent...

You might think that I understand everything ... or nothing ... or that I have all the experience in the world because I have done this before ... or that I know the rules ... or that I don't know the rules and that is for the best...

You might believe that I am high maintenance ... or overreacting ... or maybe neurotic ... or disengaged and uninterested ... or that I don't really care ... or maybe I care too much...

But regardless of what you see, what you think, or what you believe, this is what you should know:

I am broken-hearted. And it doesn't matter if it is the first day or a century later. It doesn't matter where in the "grief cycle" I might be. It doesn't matter if the wounds are healed, or healing, or fresh and new. This heart is bruised. Slightly broken. Different than it once was and will ever be again. And when you speak, or don't speak, in judgment or not, my heart is out there.

Some of "us" parents ... the 'special' ones ... can be a pain in the ass. I know that. We know that. But we are fighting a fight we never planned to fight, and it doesn't end. We don't get to clock out at the end of the day. We don't get a vacation from it. We live it, everyday. We are fighting without knowing how to fight it, and we depend so much on you to help us. We have been disappointed, by you or others like you. And we are disappointed in ourselves. We are your harshest critics. We are our own harshest critics too. We are genuinely fearful, and driven, and absolutely devoted. And we also know, we need you. So please, be careful with us. Because as hard and tough as we may look outwardly, our hearts are fragile things.

Tuesday, September 7, 2010

46 Mommas Shave for the Brave!

Every week day, 46 parents in the United States hear the words, “Your child has cancer.”  Today, 46 strong mommas shaved their heads for childhood cancer research in an event properly titled:  46 Mommas Shave for the Brave.  Visit their site to learn about the kid warriors who have inspired their mommas...their stories are heartening.

 Stastically, 20% - 25% of these children will not survive. For certain types of childhood cancer, the numbers are more dismal. For example, a cure remains elusive for kids with DIPG, a rare brain cancer with less than 10% surviving 18 months after diagnosis. An even smaller percent will live 5 years, the standard measure of survival for cancer patients.

Awareness is the key, as it brings much needed funding. Approximately 4% of the National Cancer Institute’s budget is dedicated to childhood cancers.  The lack of funding is a large reason so few breakthroughs have been made for childhood cancers compared to adult cancers.

The 46 Mommas have two goals. The first is to raise awareness by shaving their heads, something which has never been done at this scale by women.  They want to get the word out that cancer happens to kids too. Their second goal is to raise at least one million dollars for childhood cancer research through the St Baldrick’s Foundation, the world’s largest volunteer driven fundraising program for childhood cancer research.

The St. Baldrick’s Foundation currently funds more in childhood cancer research grants than any organization except the U.S. government. St. Baldrick’s head-shaving events are the fastest growing volunteer-driven fundraising opportunity benefitting childhood cancer research. To learn more visit their site http://www.stbaldricks.org/

Monday, September 6, 2010

Our Home Hospital - Golisano Children's

I think nearly everyone can agree - being in the hospital just stinks!  The smells alone that fills a hospital is enough to make you turn over (yes, everyone who knows me knows how sensitive I am to smells).  Now that we've lived in 3 hospitals across NYS, I'm ever-so thankful for our home amenities at Golisano Children's Hospital at SUNY Upstate Hospital in Syracuse.


As I was breezing through the Sunday paper tonight, an article about the hospital caught my attention.  It was one year ago this week that the hospital was dedicated and officially opened.  This hospital is beautiful, through and through.  It is a two-story, 71-bed children's hospital that crowns the top of University Hospital's new $150 million East Tower addition.  The hospital was made possible by more than 8,000 donations, big and small, including Rochester businessman B. Thomas Golisano, who donated $6 million and was honored with the namesake.  In total, the children's hospital cost $50 million....and well worth it, in my opinion!

The facility is chock-full of enhanced patient and family amenities, most notably spacious private patient rooms with furniture designed to give parents and family members a comfortable night's sleep without leaving their child's side. The private rooms are more than 250 square feet larger than the hospital's previous existing pediatric rooms, which were double rooms (dear lord...I'm having flash-backs to M9 at Memorial!). With the addition of the new two-story children's hospital, the amount of space dedicated to pediatric care went from 18,000 square feet to more than 87,000.  The hospital treats children from 43 counties throughout New York State.


Floors also contain numerous age-appropriate playrooms, family lounges (where parents and visitors can prepare meals, relax, access computers) a Family Resource Center, laundry rooms, sleep rooms for parents of kids in the PICU, a solarium, a chapel, an exhibit center....and most importantly, a Tim Hortons and a Cold Stone Creamery (which just happens to be owned by our friends who own the Tim Horton's in Cicero!). 

So what does this all mean for the patients and families?  Honestly, more than I am able to express.  In our situation with having a young child hospitalized, you are dealing with his sleep schedule, play schedule, seeking calmness, not to mention the whole privacy issues that you just don't get when you are sharing a double or god-forbid triple room with other sick people.  Even down to the "amenity" of a private bathroom is something that can bring an exhausted mama on a roller coaster of emotions to her knees.  When William was transferred to M9 at MSKCC (a relief from stepping-down from the POU) we had a double room and had a roommate for about half the time we were stuck there.  Whether we had a roommate or not, adults were not allowed to use the bathroom in the room - it was for patients only.  That meant, every time I needed to use the bathroom, whether it was first thing in the morning or the last thing I wanted to do before going to bed, I had to either leave William alone in the hospital room (which was only done if he was soundly sleeping...and even then my heart skipped a beat every minute it took me to use the bathroom) or take him with me to go use the bathroom at the other end of the hall. And guess what, sometimes the two bathrooms on the floor were in use (since parents were also using them to shower in!).  So, if William was awake, I'd have to unplug his IV pole, gather it up with him, put him in the stroller, cruise down the hall,  struggle with the bathroom door, stroller and IV pole to get us all in there.....and, well, have no privacy - lol!

In all, it is clear that a lot went into the design of Golisano Children's.  I really can't think of a compliant about the physical space of the facility.  (Now if only I can work on allowing parents the option of ordering through the cafeteria, since getting food is a whole other issue when you are up at the hospital alone with a sick child).

For all of those who donated, big and small, to make our local children's hospital the wonderful place it is, my heart-felt thanks go out to you! 

Sunday, September 5, 2010

Our Neuroblastoma Friends

In May, I received an email from Shirley of Alex's Lemonade Stand as follow-up to my joining their email list.  Shirley nicely asked me if I was interested in being matched with a mentor.  A couple days later, I received my first email from my assigned mentor, Megan.  I have to admit, just getting Megan's bio info from Shirley was rather impressive.  She is the mother of Brady, who was diagnosed with Neuroblastoma in January 2009 when he was 21 months old. He too was considered Stage 3 - Intermediate Risk, just like William.  Brady is one of a set of triplets and has a younger sister (yes, Megan is the mother of 4 adorable children!)

Right away, I felt a connection with Megan through her emails.  Her family also experienced the frustration of mis-diagnosis only to have the tragical proper diagnosis a month later.  In Brady's case, they were told he had Cerebral Palsy.  When his lower body control was suddenly affected, the family brought him to the ER where an MRI was completed.  Shortly after, they were told little Brady had a large tumor in his chest wall that extended into his spinal column, almost completely compressing his spinal cord. He underwent immediate surgery to remove part of the tumor to alleviate the pressure from his spinal cord. 

From there, the Williams' family story is remarkably similar to ours - they sought a second opinion at Memorial Sloan-Kettering, underwent two rounds of chemotherapy and then a second surgery to remove the majority of the remaining tumor (that surgery was completed by the same surgeon that did William's resection at MSKCC).  Today, although Brady is in stable condition from the Neuroblastoma perspective, he is also dealing with complications and long-term side-effects from the very treatment that helped him achieve wellness from cancer.

I've greatly appreciated Megan's uplifting and comforting messages over the past couple of months.  Reading them gives you some sense of consolation like only can be passed on from someone who has walked in similar shoes through the tragedy of having a sick child.  We've shared frustrations on the difficulty of advocating for our boys and the realities of the impact the experience take on you emotionally, on your marriage, on friendships....on everything.  To say the least, Megan has offered tremendous insight from someone further down the road to recovery than us and provided me great encouragement. 
 
So a few weeks ago, as we were emailing about Megan's upcoming second annual Alex's Lemonade Stand, I was most excited when she asked if we'd like to get our families together.  Last weekend, we met at the Strong Museum of Play in Rochester and had a blast with this amazing family.
 
Check out all the kids together! 
Back Row:  Brady, Cara, Nicholas
Front Row: Eli, William & Allie
 

  William thoroughly enjoyed every bit of his first trip to the museum, especially the kid's Wegman's.
1 - 2 - 3 - 4 - 5...(almost) all the kids playing together!  The helicopter was a big hit!
Nicholas and Allie were so adorable standing, engrossed in watching the train.  In the end, Allie and William ended up encouraging their older siblings to go for a ride!

My boys liked a game in the new Super Heros display...it involved activating lights and electronics - why wouldn't they love it!

Today I had the pleasure to help Megan prepare for her fundraiser for pediatric cancer.  Her family is hosting their second lemonade stand and donating all profits to Alex's Lemonade Stand.  It's amazing the effort a busy mother of 4 kids under 3 1/2 can do to advocate for a cause dear to her heart.
 

Megan thought of every possible detail to make this stand a success!


Thank you Megan for a wonderful two weekends of hope.
 
To learn more about Brady, our courageous Neuroblastoma warrior, visit their family blog:  Steps for Brady.

Saturday, September 4, 2010

Maureen's Hope Foundation

Within days of William's diagnosis, two very dear neighbors and friends, Debbie and Robin organized a raffle fund raiser on behalf of William.  Debbie called upon help from an organization that she is very active in, The Maureen's Hope Foundation: a local, non-profit organization based out of Baldwinsville, NY.  The mission of Maureen's Hope is to offer support and assistance to people facing the challenges of cancer and other life threatening illness.

I would like to take this opportunity to spot light this special Foundation.

Susan Bertrand founded Maureen's Hope in memory of her sister Maureen who courageously battled cancer for two years. Maureen's work here on earth was done in 2003, but Susan knew her work was just beginning.  Through her sister's illness, she realized the many needs that patients have when faced with a life altering disease that can not be met by the medical community.  Susan organized the Foundation to fulfill some of those needs. Maureen's Hope caters to the personal needs of individuals facing these challenges by providing gift baskets and services that offer comfort and strength as well as helping to improve their quality of life.

Maureen's Hope Foundation has been able to provide over 400 baskets to cancer patients over the past five years. We have also provided patients with a cleaning service for their home, meals for the family, a wig and/or hats, complementary therapy such as reiki or massage and assistance with fundraising events to help families with medical expenses.  The Foundation helps to empower and encourage people facing an illness by offering a variety of programs that offer hope, inspiration and education to patients. Guest speakers for these programs include motivational speakers, health care providers and community representatives.

When Maureen was receiving treatment at Memorial Sloan-Kettering in NYC, she met an inspiring 6 year old girl named Angie.  Angie had been also receiving treatment at MSKCC, while living at the Ronald McDonald House in NYC (the same one we stay at with William).  In 2004, the Foundation donated a beautiful playground to the Central New York Ronald McDonald House in Syracuse, titled "Maureen's Hope, Dreams and Imagination."  All this work by The Maureen's Hope Foundation is funded through grants, corporate donations, fundraising events...and the dedication of Susan.

In our family's case, The Maureen's Hope Foundation printed the raffle tickets and donated the prizes for William's fundraiser.  In the bigger picture, they did so much more for us while we were in a state of shock and despair.  The generosity extended by the foundation and the realization of executing such a successful fundraiser provided us a greater sense of hope.  A sense that people in our community were willing to extend a gift to a family they never met, perhaps also a prayer....and hope for brighter days ahead.

Earlier this week, I received a devastating email from my friend Debbie.  Susan, the founder of Maureen's Hope, had been in a terrible bicycle accident while participating in the The Lance Armstrong Race for Cure in Pennsylvania.  Nearly 2 weeks following the accident, she remains in critical condition in a PA hospital.

We all know it seems so unfair when bad things happen to good people, but this seems just unimaginable.  Susan has dedicated so much of herself to helping others in need and now needs our prayers and love sent her way as she strives to heal.  Please include her and the entire Bertrand Family in your thoughts and prayers.

To learn more about The Maureen's Hope Foundation, visit their web page:  Maureen's Hope.org

Friday, September 3, 2010

Come celebrate hope with us....the CureSearch Walk in Syracuse!

I know its early to hit you in your pocket, but this is a topic that can not be ignored.  The bottom line is, PEDIATRIC CANCER IS GROSSLY UNDER-FUNDED.  PERIOD.

When William's tumor was first found through an ultrasound and the oncologist told us with much certainty that it looked like Neuroblastoma, I have to admit, I knew the name sounded familiar, but could not recall exactly what is was.  Fred asked Dr. Tavares, "So this isn't cancer, right?"  She calmly replied, "oh yes" with a subtle nod of her head. 

Since that day back in December, I have to tell you, most everyone I've talked to (during those few conversations outside my little HEMOC world) have never heard of Neuroblastoma.  They've never heard of it, let alone know it is a form of cancer.  It doesn't sound so bad...it's not called, Neuroblastoma Cancer.

Not only have most Americans never heard of Neuroblastoma, the fact is, it is a highly aggressive cancer, and one in which there is no effective treatment for advanced forms.  Why? The answer is simple and devastating: there is not enough money for research. Yet, consider this - since the 1950's the rate of children surviving leukemia shot from 10% to 80%. Similarly, the survival rates for other types of cancers, like breast cancer for example, have also improved significantly thanks to extensive research that developed innovative and less invasive treatment options.

In contrast, children diagnosed with cancer are faced with woefully inadequate funding from the government topped with a lack of interest from the pharmaceutical industry.  These "orphan diseases" like Neuroblastoma promise little or no profit. Unfortunately no profit leaves pharmaceutical companies with little to no incentive to develop treatments.

Children diagnosed with Neuroblastoma deserve better odds of survival on par with most other cancers. Cancer kills more children per year than cystic fibrosis, muscular dystrophy, asthma and AIDS combined. But pediatric cancers collectively receive less than 3% of the National Cancer Institutes $3.1 billion dollar annual funded research portfolio of 2009.  Click here to see the facts yourself:  Research Funding by Type of Cancer .

For every dollar spent on a patient with breast cancer, less than 3 cents is spent on a child with cancer.   The American Cancer Society gives less than 4% of its funding to childhood cancer research. Aren’t children our most precious resource? How can you put a price on a child’s life?


The bottom line is, these numbers are not good enough.  The chemo drugs that treated William were developed in the 1950's to treat adults with cancer.  No wonder why 3 out of 5 childhood cancer survivors will suffer from long-term side effects from their treatment....just like our William is dealing with.

We need to invest in funding for childhood cancer research ....

So please join the Relyea and Santore families as we take part in the Syracuse CureSearch Walk on Saturday October 2nd at the New York State Fairgrounds. 
This walk will celebrate and honor children whose lives have been affected by childhood cancer, while raising funds for lifesaving research. This very special day will include prizes, music, and fun activities for the entire family!
Date:  Saturday, October 2, 2010
Registration:  8:00am
Walk Begins: 9:00am
Location:  New York State Fairgrounds, Gate 7

Here’s a link to our team page: 
     Team William Relyea - Will Powered!

Join us for the day, for an hou, walk with us in spirit as a Virtual Walker or support those who will walk by pledging a donation.

We look forward to see you there!

Thursday, September 2, 2010

National Childhood Cancer Awareness Month

 Welcome September...and welcome National Childhood Cancer Awareness Month!

This month is going to be a busy one and one bringing many changes for our family.  Nicholas is entering Universal Pre-K on September 7th, William is due for his quarterly scans (we will be traveling back to Memorial Sloan-Kettering in NYC from September 12-15th), William will undergo gastric surgery on September 16th at Upstate Hospital for the placement of a feeding tube (yes, I realize it is the day after his last scan in NYC) and Poppie will be officially retired by the end of the month.

As crazy as this month is sure to be, I have actually been looking forward to September.   I look forward to sharing more of our little William's courageous battle with Neuroblastoma, how our family has dealt with his illness, sharing the ways our lives have changed forever more and our experience as living 'life after cancer.'  Please join me as I share information about Neuroblastoma, share stories of our inspiring pediatric cancer warrior families, provide information about other childhood cancers and share ways YOU can make a difference in the future of pediatric cancer. 

I have to admit, when William was first admitted to Golisano Children's Hospital on December 4th, 2009 we explored the beautiful new hospital and its brightly decorated units.  One in particular caught my attention.  It was the one behind the locked doors, unlike any other unit, even more intimidating than the Pediatric Intensive Care Unit.  The sign on the door merely stated: "Locked Unit.  Press button on wall to enter."  My first time past it, I could not figure out what was behind those doors.  It seemed quiet, almost barren, only a few nurses scooting from room to room.  A couple days later, we happened to pass by during the daytime and saw a bunch of little pale, bald kids tethered to fully-loaded IV poles.  Then it hit me - it was the pediatric oncology floor.  Who even knew such existed.

Six days later, I found myself being transferred to that unit, with my then six month old baby in my arms.  We were welcomed by many warm-hearted nurses, other parents who looked like they too had been to hell and back, much like how I was feeling, and all the sweet little children who had Christmas cards and decorations filling their rooms.  It was then I officially became a cancer mom.

~

Together, we must raise awareness of these diseases that silently invade our children's bodies, do damage and do the unthinkable by taking the lives of 3,000 innocent children every year in the US.  From there, we need to increase understanding of funding and research needs to make sure this does not continue to affect our most precious gifts, our children.

This Could Be Your Child...

This 3-minute video puts it into persepctive.  The causes of most childhood cancers are unknown. There are no warning signs or unhealthy lifestyles. At present, childhood cancer cannot be prevented.  Childhood cancer occurs regularly, randomly and spares no ethnic group, race, creed, color, religion, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.