Why....why us...

Well over a month ago, I said to myself that I really need to resume blogging. I have many, many fond memories of looking forward to getting Nicholas down to sleep, only to run to the computer to journal our adventures of the day, whether they were big, small or sometimes nothing at all. I tried getting back into the swing when I first wrote a blog entry in May after a long hiatus. It took me days, weeks actually, to put together a post. The bottom line was obvious, that old admiration for something so simple just was not present anymore. I struggled...I didn't want it to become a pity party or something that I would be embarrassed to have other people read or look back on years down the road.

Its like addressing the giant elephant in the middle of the room.....its there, ever so evident, but you just have not a clue how to go about figuring out how it got there in the first place...and what the heck to do about it.

And so, one night weeks ago, I started an entry...entitled it "Take that, cancer." I tried ever so hard to be uplifting and positive, like as if my taking a positive tune would help bring positivity to our lives. My husband seems to be following said approach....and it seems to be working well for him....yeah, but not so well for me.

Another week later, I edited the title of that entry....."Cancer sucks!" yet still, it wasn't right....

And so, another hectic week or two goes by, many nights when I'm just completely exhausted to the inner core of my bones by the time both kids are down for the night (getting William down is always a curve ball - some nights it takes 20 minutes, other nights well over 2 hours....you just never know what you are going to get thrown each night...and then once he is down, its time to rush to get him hooked up to his TPN for the night and then wait to see when he will wake for the first time of the night....will he pull the infamous 20-minute later waking or will he manage to sleep for a couple hours and then wake just as I'm ready to hit the hay....you just never know....).

Here and there I went back, re-read the entry, had to change it depending on my thoughts of the moment, but no matter what, it just wasn't flowing right. It reminded me too much of my feelings when reading William's Caring Bridge journal entries. I sincerely have to preface this with the disclaimer that I truly, truly appreciate my mom's work and all her hours upon hours of work she dedicates to the CB site. Lord knows I certainly do not have the ability to take on sharing the information, I can barely keep up with daily life around here (and sometimes do not even accomplish that). The bottom line is, I sense my mom too is stuck in the place where she is trying to put a flair of optimism to the situation. Although she does not live here and does not really know everything that happens under our roof, even in one single day, and certainly does not know my inner-most thoughts (most of the time, we can barely convey the most basic information to each other between all the chaos)...., but I can always tell my dear mom is trying her best to keep things accurate, but with a sense of kindness to it all, almost like the need to protect people of the real hell that has been surrounding our family. I read it and say to myself, "really, that is my life....why am I struggling so much....that doesn't sound so bad....."

The fact of the matter is this, words just can't explain what our family has been through over the past year....

period.

I'm always torn as to how to express these feelings. On one hand, I don't want to just complain relentlessly about this experience, as it is, just stating the facts of what we go through medically is overwhelming enough, let along including any emotional notes. But on the other hand, perhaps it may be a little therapeutic for me to get these thoughts out in some form.

But seriously....this sucks!


This has been a nightmare. A complete nightmare... one that seems like I just can't wake up from, as much as I try.


....its the unwakeable nightmare......and its our life.


At the heart of it all is an adorable, chubby pale-faced little boy, innocent to his inner-most core. He never asked for this, for that matter, none of us did. We merely anxiously waited the arrival of a second child, one to love, one to enrich our lives and welcome into this little world of love we had built for him to join.

Unbeknownst to us, something else was already bearing its ugly self, silently inside our William. This horrific disease had snuck into our dear William. It hid inside him, multiplied and did unimaginable devastation. On one hand, I thank god it's a rare condition, and for that matter, thank god pediatric cancers are rare overall. Nobody needs to go through a similar, or heaven forbid a worse experience than we have. But if it is so rare, than why.....why us......why did we have to be one of the 400-600 families this year who had to take this road?

Tonight was expected to be a nice family outting, one we had been looking forward to. Nicholas started gymnastics lessons. Like everything in our lives since December, we don't get too excited for scheduled events. We struggle with planning things too far in advance, or getting Nicholas' hopes up for something that may not be able to happen with the unexpected turn of a temperature in William brought on over night or anything else that could drastically change our plans. I learned the hard way of what happens when you get a 3-year-old pumped for a fun event one night at bedtime, only for him to wake the next morning with his mother and brother gone at the ER, leaving one very disappointed boy who was going to miss his friend's birthday party at the bounce house.

Back to tonight.....so months ago we were walking around Shoppingtown Mall one quiet Sunday evening and came upon a new gymnastics center. Nicholas was highly intrigued with all the equipment and watching the kids giggle and bounce on the mats. When I found the opportunity for gymnastics lessons offered this summer through our town, I was excited for him to have the opportunity to participate. This was just after our rather tumultuous experience with soccer lessons (of which I desperately counted down the minutes for that to end......Nicholas certainly did not take to the team sport and my patience for trying to keep him from laying on the field each week was well-weaned by week #5).

Nicholas too seemed interested in the prospects of gymnastics. He's asked a lot of questions, "will I get to jump really high? When can I fly across the room?....." and so, I had high hopes for his new-found interest.

Whether it was the fumble on the spring board on his first attempt to jump into the foam pit, nerves or just plainly that he is not at all interested in sports, lets just say the one-hour session was not at all what I was hoping for....and point-blankly, not enjoyable for either of us. I ended up intervening (yes, became the over-protective mom who ran over to her child after I saw him trying to explain to the young instructor all his concerns with attempting a second try at the spring board.....I knew something was going downhill when I saw his arms outstretched at his sides, bouncing with emphasis as he was doing his best to relay to her his convincing argument to pass on his turn.)

Once I was on the gymnastics mat, it was nearly impossible for me to get off. My little man clinging to me, asking me with most sincere pity, "please Mommy, just come hold my hand and come try it with me."

The entire time there, I couldn't help but look around at this room full of similar families of preschoolers.....they weren't begging their kids to participate, trying to peal off their child from a tight clutch of panic and disinterest. Yeah, a few kids benefited from a little redirecting from their parents, and many posed for those ever-so picture perfect, "first gymnastics" pictures....but what about us.....let's see, after I begged Fred to get out of work a little early to join us in an effort to be supportive of Nicholas' new interest and also be there to help out with William (since I didn't know what to expect of the set-up and what parent participation would be like for the first session), he was long gone to the car. As it turned out, the building was not air conditioned and poor William was nearly melted within a few minutes of being in the sauna of a room. He certainly can not handle such situations on an 95 degree day, nor is it good for his condition.

As I was dripping with sweat, literally, and doing all I could to encourage Nicholas to take a second try, or even for him to go over to an old friend who we have not seen literally since his birthday in November.....he suddenly tells me, hitting me like a ton of bricks....."Mommy, I just can't. I can't do it, I don't have any friends and I just can't do it now because I have no friends."

My heart skips a beat. I don't know how to respond.....is he just coming up with something, anything to get out of participating......is this his way of expressing the fact that he is the only boy in his group....is it just awkward seeing a former good friend who we once way once played with multiple times a week....or is he telling me something more, something like he feels just like I do being in this giant room of people.....we just don't fit in the way we once did.

As I have said before, our experience with cancer has undoubtedly changed us. It has changed the family we once were, and has forever changed the people will are now and will forever be in the future. It has stripped us of our innocence, has beat us down to the point of exhaustion and in some sense, some days, has ripped our excitement for life away from us....all of us. We do not feel safe away from the little cocoon of our home, like we are exposed too much....it seems like everyone knows about us.....but at the same time, nobody has a clue about us.

That brings me back to my question, why us? Why did this have to happen to us. Surely there are other families more suited to handle this better than us.....why did this cancer have to hurt our William, invade our lives, hurt this adorable, innocent little baby, impact the life of his once fun-loving brother....why didn't it choose another family with more patience, or more money, for instance, to better handle the financial burden this has created, why not choose a family with retired grandparents to be more available to help out....how about a family with stronger faith so they wouldn't be constantly struggling with these questions of why.....how about finding a family who is less aware of the medical side of this all, one who the hospital staff would not have expected to take on all the central line care and just arrange for a homecare agency to send a nurse out to the house for all routine care needs....how about a family with better insurance coverage....or better job security so the looming fear of William lapsing in insurance coverage wouldn't cause an already exhausted family to loose more sleep over worrying about that...

Plenty of people have told me, "thank god William is so young and he will have no memories of any of this that he has been through." The bottom line is, we ALL have been impacted... changed.... and some days, such as today, I would have to add, nearly destroyed from this experience. This is not something that is going to be "behind us" someday....

...it is us.

As I was in the middle of this stifling room with all these average looking people with bouncy, happy, kids participating in their first gymnastics session, I couldn't help but to just look around and repeatedly ask myself why us. Why has this been chosen as part of our path...why is it that when I see a little boy running up and down the spring board run do I want to avoid even looking at him, seeing how happy and innocent he is.....doing all the things he should be enjoying without a care in the world.....he's not carrying a pack on him for his IV fluids, he doesn't have crusted vomit around his nose from an earlier experience of the day, he doesn't have to be careful not to get his shirt wet when drinking from his mom's water bottle to stay cool (because he doesn't have a sterile dressing covering his central line under that cute little shirt). I reluctantly asked the fellow gymnastics mom how old her little tot was, only because I felt the need to be nice, since he had decided to carefully examine my purse and help himself to anything that looked intriguing. Sue enough, she replied, "oh, he just turned a year old....and he's getting this walking thing down waaay too fast."

Gulp.....

....exactly....that is what kids this age should be doing......running around entertaining themself as his older sibling is having fun on the gymnastics mat, learning how to do a somersault.

So as Nicholas and I headed for the car, me doing my best to hold back the tears, only to find a frustrated Fred out in the car with a sleeping William at 6pm (apparently William had screamed for over 20 minutes in the car before passing out....finding him sleeping was not encouraging, since you can imagine what that will do to our already too late bedtime routine for a one-year-old who thinks naps are beyond him). So, in the end, our night that just a mere 80 minutes prior we had left the house hoping for a nice hour of cheering Nicholas on as we watched his first gymnastics class....had once again, been added to the disaster list.

~

Ever since Paige's Butterfly Run where they had signs stating pediatric cancer statistics, I have had the stastics running through my head...

Today, despite amazing research progress, cancer still kills more children than any other disease. Each year cancer kills more children than asthma, diabetes, cystic fibrosis, congenital anomalies, and AIDS, combined.

11,000 young people are diagnosed with cancer every year.

Each year about 2,300 children and teenagers die from cancer.

Although cure rates are steadily increasing, 35% of children will die from a diagnosis of cancer.

36 children and adolescents are diagnosed with cancer everyday in the United States.

One in every four elementary schools has a child with cancer.

The average high school has two students who are current or former cancer patients.

Childhood cancers affect more potential patient-years of life than any other cancer except breast and lung cancer.

Cancer is the leading cause of death by disease in children under the age of 15 in the United States.

The causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented.

Childhood cancer occurs regularly, randomly and spares no ethnic group, 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.
Nationally, the incidence of cancer in children is over 15 times greater than that of AIDS in children.

One in every 330 Americans develops cancer before the age of 20.

~

At some point in this journey, I will eventually find the answer to my question of "why us..."...why is our William one of the 400-600 kids who was diagnosed with neuroblastoma in 2009...but for now, at least today, it is something I am deeply struggling with and one that does not bring any sense of comfort.

Everyday is a struggle. sometimes, just getting through a few minutes is a struggle. This entire experience has been exhausting....physically, emotionally, spiritually....exhausting in an all-encompassing sense and to all of us, that being once again very evident with Nicholas' reaction at what should have been a fun experience for him.

And so, our blogging may take a different direction for a bit, but a direction that needs to be shared. It may be raw at times, un-edited...but promised to all be true to the people we are....to the people we have become....