Friday, March 29, 2013

Peace of Mind

I think I have been avoiding the blog.

It wasn't completely intentional (dot dot dot).

However, I did knowingly shoo away a thought last night about Hello Sunshine and when typing in the web address for a Bloomingdales gift registry, I felt a twinge of guilt when I saw begin to appear, then quickly vanish from my Google search history quick click bar.

It's always hard as a blogger when you feel as if you can't (or are scared to) share parts of your life. I really strive to keep it real, but sometimes anxiety and my overwhelming inclination to quadruple-guess myself takes over. Fortunately, my passion for writing usually wins out (at some point).

Wild passion - 1, Unfounded worry - 0

* * *

About two months ago, Chris and I placed Aiden's portable DVD player on the edge of a narrow glass-toped table. I pushed back a hard plastic flyer holder and moved a pile of brochures. We sat him in a worn maroon-colored chair; the kind with little fabric cushions on each arm to make the metal frame more comfortable. Aiden was happy as a clam once a paper plate of salt & pepper pistachios landed in his lap and Word World appeared on the tiny TV screen in front of him.

I sat next to Chris and began rubbing my right index finger over my right thumb. It's a nervous habit, but calms me down. Cold winter days mixed with excessive amounts of hand-sanitizer, though, made my hands overly thirsty which caused this stress-reliever to offer little relief. Chris just starred straight ahead as if the ecru-colored walls were trying to tell him something.

After sitting down to face us, the genetic counselor began speaking.

Below is my summation:
The type of cancer that Aiden had is linked to a specific genetic disorder; the disorder (and therefore the linkage) is very, very rare. It is caused by a gene mutation that is hereditary, though it can be spontaneously created by the index child. This disorder greatly increases the risk of developing several types of cancer. It is not likely that Aiden will present with this gene mutation as our family history does not offer a reason for concern. The age of diagnosis, though, of the index child (under 12 months) can sometimes indicate a small increased risk.

With all that being said, Chris and I have decided to get Aiden tested as the results can potentially impact his health-management moving forward as well as our desire to grow our very young family. (Note: The other day Aiden actually informed me that he would like there to be a baby in my belly. My eyes grew very large and I patted him on the head three times.  He then continued to paint at his easel as if the preceding mention never occurred.)

* * *

Now, rewind to earlier this January.

“So have you and Chris started trying to have more kids.”


“Why not?”

“I cancelled the genetic testing appointment last October.”

Aiden's oncologist is great. She always gets right to the point and on this day in early January she was no different. She informed me that she would be reaching out to the genetics department again and that I need to schedule the appointment. She is not at all worried that Aiden will test positive for the gene mutation, she simply wants Chris and I to be able to move forward with our lives. She is right, though, this unknowingness has been a barrier for me; a colossal-sized wall of worry. I thanked her for the push and said that sometimes I just need a swift kick-in-the-ass. With a smile and hug, she happily obliged.

Every time I meet one of Aiden's new specialists, I ask the same questions. Maybe it is my healthcare marketing background or my crippling need for information, but I try to research every chance I get. Now, I am not haphazardly Google-ing, but I do frequent abstracts from medical journals, white-papers and call up physician-friends for advice. I am not only Aiden's mom, but his advocate. No matter how hard life gets, I know in my heart-of-hearts that ignorance is not actually bliss; at least not for me.

Peace of mind, peace of mind, peace of mind... That is what people keep telling us.

The results will offer peace of mind. I sure hope so because waiting a month+ for findings is offering very little in terms of peace. Fortunately, life goes on. We are still waiting to hear from the genetics department, but I am determined not to let anxiety whisper sour nothings in my ear any longer.

I love my Aiden more than I can even exponentially express. He is a fun-loving, curious, insanely stubborn, amazingly empathetic little man and he needs his mommy and daddy not to be crippled by worry. (Note: Chris will likely want me to edit this sentence to read “he needs his mommy not to be crippled by worry” but I see it as a team sport.)

So here we are today...

Yes, I already called the genetics department. No, I have not yet been added to their “transfer straight to voicemail list.” And no, results are still not in.

You know what?

It doesn't matter.

In this moment I am grateful for my faith, my family, our health, our home and our love for one another. Truly if you have all that in your life, nothing else really should matter. Right?

Looks like the final score is in...

Unwavering faith and love - 1; Sneaky, ill-hearted anxiety - 0

Tiny Moments (and one REALLY BIG one) - Since My Last Post:

This smile gets me every time

Yummy pre-Easter chocolate from Memaw Gigi

Aiden's celebratory sundae after meeting Washington Redskins quarterback, Robert Griffin III!
I do plan to write an entry about our amazing "dream day" at Redskins Park, but I am waiting to get the professional pictures from The Gold Hope Project.  The Gold Hope Project helped make the visit possible and we are so very grateful for all that they did.  We can't wait to share the pictures and experience with all of you.  For now, though, be sure to check out the story written about Aiden on the Washington Redskins Blog: The Washington Redskins organization has been amazing and their kindness truly touched our hearts.  HAIL!

iPhone shot of Aiden giving Robert Griffin III a high-five :)

Monday, March 18, 2013

TINY MOMENTS MATTER: Tempering the Tantrum

Sunday, 10:00PM



Mommy, you annoying me! Do you hear me? Mom-maaay!

I heard the words (“annoying” happened to be a new one), but I couldn't help but smile after the weekend we had.

I sunk a little deeper into the feathery plumpness of my pillow. It smelled like fresh lavender sprinkled with mint and a hint of rosemary. If it wasn't for the snickers escaping my oh-so-considerate husband's lips, I might have been able to drown out the dawning of temper tantrum #248 occurring down the hall.

As a mom of a toddler, certain survival skills are learned early. For example, we build our stamina each time our tot escapes our grasp at the supermarket, makes a bee-line for the lobster “pool” but loses focus and attempts to climb the Pepperidge Farm donut hole display instead. Similarly we master the art of mental preparedness by always having an answer to the question, “why?” Even in the middle of church, when it is exceptionally quiet, on the one Sunday we take our chickie out of children's ministry early to “really” experience worship.

Lastly, we hone our ability to adapt no matter the situation or awkwardness. When our 3 1/2 year old (22-month-post-nursing kiddo) tells us, publicly, that he likes our boobs, we fein an over-exaggerated laugh, ask about the latest episode of Handy Manny and frantically search our purse for anything consumable which can be placed into our little darling's mouth. Toddler outbursts, though, are a true force of nature and test of will. Planning, training, and foresight sometimes do little to temper the actual tantrum.

Hahahaha! Did he just say that you are annoying him?


36 Hours Earlier

Aiden started “soccer” a couple months ago. His soccer lessons are more accurately defined as early childhood development playdates which are regularly scheduled every Saturday for 12 weeks. Yes, he is part of a “team” but there is no dribbling, no passing, no blocking, no get the picture. There is instruction from a coach and the kids learn to follow directions and play together in a semi-structured environment. Aiden's “soccer lessons” are a good thing. This past Saturday, I was flying solo with my little munchkin.

One of Aiden's first "soccer" lessons

The second we stepped out onto the soccer field, I felt it; the knowingness that something was awry. Aiden seemed more disinterested than usual. He refused to waddle like a penguin across the field with his peers. Even though penguin mama was flapping her wings frantically in an effort to cheer him on, he continued to inch forward at a snails pace, no wing-flapping included.

A new game was introduced next. It involved aliens which I tried to sell Aiden in my best extraterrestrial voice. He ran towards the circle where all the kids were seated listening to coach explain the game. It involved mini, orange cones. I took a deep breath, happy that he was going to participate. In an instant, he seized the tower of cones right out of the coach's hands, ran with lightening speed over to the adjacent field and catapulted them forth. I was in full pursuit, but it was too late. I picked up the cones, haphazardly yelled a handful of reprimands, and tried to capture my little marathon runner. Unfortunately, he ran in a zig-zag pattern across the field and away from me; all-the-while crazily-laughing with his hands waving he decided to flap...perfect.

That was only the beginning...

Soon thereafter we left soccer. It was a half-hour before soccer was to end, but we left. When we exited the sportsplex, Aiden got the picture. He started screaming, scratching, hitting and kicking but I had him in a bear hug and mommy survival mode took over. Somehow I buckled him in the carseat; it is all still a bit blurry.

We drove and drove and drove until I realized that my gas tank was empty. No my car did not breakdown (though that would fit well within the context of this story). I made it to the gas station in the nick o'time time. Aiden was still scrying (a cross between screaming and crying) and I was still holding up my code of silence. I refused to indulge his hysterics until he calmed. There were a few moments when he promised to be good and then asked to go back to soccer. When I explained that we were not returning, the tantrum began again.

You are my mommy.

You not 'posed to be mean.

You my mommmmm-my.

At that moment I turned from the front seat and looked at his sweet face. It had been quite a while since we left soccer. His red cheeks, glistening eyes and furrowed brow made me want to hold him in my arms and kiss him all over. (We were parked at the gas station by this point.)

Aiden, mommy loves you all the time.

No matter what, I will always love you.

I asked if he was ready to go home. He nodded and said that he loved me too. I asked if I could give him a hug and, of course, my little babe wanted nothing else. I walked the perimeter of my car situated in front of tank #3, opened the rear passenger door and gave my big boy a great big hug. When we pulled out of the station, $71.23 later, I was proud of myself. I was actually ready for this tantrum, this seemingly unpredictable force of nature.

* * *

Late Sunday night, when I heard the rants of my sleepy tot coming down the hall, I couldn't help but smile. Celebrating all the tiny (recurring) moments life has to offer is important; every tantrum, tirade and meltdown included.

Every tiny moment matters, folks.

And for that, I am thankful every, single day.

Tiny Moments - Since My Last Post

Just for fun

A "spring" snowfall

So we had to pull out all the stops...brought Frank the Elf back to leave a little note for Aiden asking him to "listen to mommy and daddy..." 

Tuesday, March 12, 2013

A Word

There is a word that I try not to say...

A word that I take care not type...

A word that I don't let float around my mind, if I can help it...


Ugh, there I just said it, typed it and thought it.

Back in May 2010, our lives changes forever. Aiden, only five precious months old was diagnosed with cancer. Embryonal rhabdomyosarcoma to be exact. From that point forward and throughout treatment and recovery, cancer was a word that I said, typed and thought of often. I was at every needle prick, vein draw, imaging scan, chemotherapy treatment and clinic appointment. When Aiden was sleeping, I was either writing a blog entry, researching aplenty (against my better judgement) or trying to follow up via email with family and friends. That word was not something I was able to avoid.

I remember walking my slippered feet over to the pantry on the Pediatric HEM/ONC floor each night. I had a secret stash of my very own K-cups courtesy of a special nurse-friend. Wink-wink. I can still smell the sweet vanilla bean aroma, which delicately flavored my small disposable cup o'joe. I would carry my beverage back to the room along with a few packages of Keebler's finest and I would snuggle up next to my little snoozer. At that point, I usually lost myself in some quality programming. The Real Housewives of Anywhere were in abundance; the distraction served it's purpose well.

The thing is, though it was excruciatingly difficult to hear the words, “your son has cancer,” life in the cancer-world became routine. My K-cup ritual was routine. Weekly, often daily, visits to the clinic were routine. Hugging my nurse-family hello and goodbye was routine. Placing Aiden's nasogastric tube was routine. Eating my congealed bowl of raisin-brown-sugar-hospital-oatmush each morning was routine. Spontaneous outbursts of tears and/or anger were routine. M-I-C-K-E-Y M-O-U-S-E was routine. Port-accesses were routine. Cleaning up vomit was routine. Kissing my sweet Aiden's big, bald head was routine. Requesting expedited shipping for hundreds of nitrile chemo-grade gloves was routine. As odd as it may sound, I was exceedingly grateful for the “routineness.”

Now unprotected by my involuntary shield as active cancer caregiver mommy, I find the word to be so very loaded. I know this is occurring on a very emotional – almost intrinsic – level but nonetheless, I can't help it. It is hard to read blogs of other cancer-families and images of children lost breaks my heart a thousand times over. I feel so very compelled to help. I want to lobby on Capitol Hill that enough is not being done to protect our children from the number one disease killer. I want to beat down the doors of the American Cancer Society and yell at the top of my lungs that less than 1% is a miserable donation for pediatric cancer research. And I want to volunteer to help families going through treatment; I want to kiss all the bald kiddo heads out there and hold their mommies and daddies so very tightly in my arms. I feel compelled to do these things, but I know that I am not yet ready. I may not ever be ready.

In this way – for quite a while now – I have been deeply conflicted.

* * *

A couple months ago, I was out with the fam for dinner at our local Glory Days restaurant. Covered in remnants of a meal-enjoyed, I carried my love bug to the door. It was then that I noticed a sign imprinted with the words, 'Chris' Crew'. I saw the gold ribbons, the t-shirts and the children. I found my senses heightened. A small voice yelled, “Chris, Chris, come here.” There was running and giggling. I started scanning the room. I handed Aiden to my hubby, walked up to a woman in the center of it all and asked if she was Chris' mom.

“No, but she is right there. Hey, Amy!”

Then I saw her and started babbling. I don't really know what I said. Something like. “Hi, I am Leslie. This is my son, Aiden. He has been in remission a year and a half.” I may not remember the words, but I do remember the hug.

...the connection.

This past August, 7 year-old Chris was diagnosed with Wilms Tumor, a rare type of kidney cancer that occurs in young children. The family started a Facebook page,Chris' Crewwhich I urge you all to visit. Chris is doing very well and serves as another inspiration (along with his extremely strong mama) to me.  Actually, Chris' whole family - daddy, too - are sources of inspiration.  Please keep them ALL in your thoughts and prayers.

I believe it is true that people do come into our lives for a reason.

* * *

Recently while trying to wrap my head around actually writing a book, my book, that damn word popped into my head. I don't want to write about cancer. Yes, it is part of my story, but it is not THE story; cancer is just a piece of it. I want to write about being a believer of miracles and a celebrator of life. Perspective, perspective, perspective.

That is when it hit me. I am the one allowing the word to encompass so much more. For this reason, I decided to write this very entry. To say the word, type the word and to allow myself to think it. To share my limitations regarding outreach and advocacy. To stop letting a word scare me. Facing fear head on may require a lot of strength in the planning phase but once the obstacle is conquered; energy, ardor and confidence replaces said fear.

Yes, I still hate the word, cancer, – and I always will – but I will not allow it to control how I think, talk and write. Aiden is thriving despite all that he has been through and honestly, I am thriving too. I may not be able to take on our broken healthcare system, but I am still committed to making a difference in my own way.


I just said it, typed it and thought it.

...And I am okay.

You’re braver than you believe, and stronger than you seem, and smarter than you think.” –A.A. Milne

Tiny Moments - The Past Couple Weeks in Review:

Our "half" snow day

The BEST snowman ever (before our neighbors got to it...hehe)

Letting creative juices flow

Iron Aiden 


Balancing with Papa