A New Tradition

Fall has arrived, as evidenced by the cooler temperatures and rain we've had during the past two days.  Yesterday morning was rainy and dreary, jeopardizing the afternoon trip to the park with her Aftercare class, so I expected Alexa to be in a grumpy mood when she woke up.  Instead, she was in a great mood, excited about the prospect of rain for the the day.  Not at all the reaction I expected.  She explained, "It's raining so this means we can go and get hot fudge sundaes when you pick me up!?!"    

Wow - talk about a good memory.  Rainy days are few and far between in Phoenix, especially at this time of year, but apparently the last time it rained, we took a detour to the McDonald's drive-thru on the way home from school to pick up a hot fudge sundae.  I think the sundae was more driven by a pregnancy craving than anything else, but Alexa made a distinct associate between rain and ice cream sundaes.  Not a bad combination.....we just can't move to Seattle any time soon. :)

On our way home from Aftercare, we made the requested detour where we picked up a hot fudge sundae, with nuts of course, for Alexa.  She generously shared one spoonful - yes, just one - with me.  I'll have to keep my eye on the weather forecast to find out when to expect our next indulgence!

One way to make a rainy day better....
Alstott was scavenging for some of the nuts she spilled.

 

A Great Start

What a great Game 5 win for the Cardinals tonight!  I had a conference call rescheduled from 6-7pm tonight, so I was trying my best to focus on the call while I periodically checked the score of the game.  Needless to say, after the call wrapped, I turned my attention to the game and couldn't help but think of the 2012 NLDS Game 5.  Last year, my parents were in town for the dramatic come-from-behind victory versus Washington, and I remember little Granty, who had just come home from the hospital, watching the game from his bouncy seat.  I'm not a normal proponent of babies watching tv, but I was more than willing to make an exception for Cardinals baseball.  :)

My focus on the game caught up to me later tonight, as I had an obligation to make blueberry muffins for Alexa.  Since Damon has been out of town since Sunday, I had to pull double-duty, getting Alexa ready for school and picking her up in the evening.  Normally, I am out the door just as she's waking up in the morning.  I think she decided to take full-advantage of the change, as her breakfast choices shifted from the normal cold cereal she eats with Damon.  Rather, I was making Cream of Wheat each morning, and she even asked me to make waffles for her this morning - thankfully we were very low on the Bisquick.  However, she quickly negotiated having a blueberry muffin tomorrow morning as a substitute for not having waffles this morning, and I hastily agreed.  That 7:30am agreement led to me browsing muffin mixes in the baking aisle of Safeway at 9:15 tonight.  The things I'll do for my kids....I hope Alexa really appreciates these muffins tomorrow morning!

Damon returned today, so our morning routine will return to normal tomorrow.  I will miss Alexa's chipperness and good moods in the morning.  Today she was extremely excited to wear her uniform shirt to school, as she was going to the park with her Aftercare group this afternoon.  She made my day when she selected a huge giraffe bow for her hair to complement her beloved purple polo.  Her rationale? "I want to think about Granty today and pretend he's going to the park with me."  Yep - that put an immediate smile on my face...I knew it was going to be a good day!

Sporting a thoughtfully selected bow....
(Were it not for the Park today, she would have been wearing Cardinal red!)

Bad Timing

In everyone's life, there are moments when you just have to shake your head and say, "Really!?"  Unfortunately my "Really!?" moment came after a very long day during an especially tough time of the year.

Tonight when I grabbed the mail after Alexa and I came home from swimming lessons, I had a bad feeling when I saw an envelope from Phoenix Children's Hospital - Physician Revenue Cycle.  During the past two months, Damon and I have discovered that our insurance company and PCH are not on the same page with monies owed (we obviously met our deductible last year), so it appears that I will have to function as the middle man to provide the explanation of benefits to settle this remaining $5k balance.  Ugh - - I can only take consolation in the fact that we will not owe anything.  I can manage the financial aspect without a problem, as I did become the queen of EOB's and medical billings over the past year, but the content of this envelope was a harsh reality check for me tonight.  

The mailing contained only four pieces of paper, but each sheet was simply a list of medical service codes, descriptions and charges for Grant's final stay in the PICU.  Each sheet had 42 lines of codes detailing the services Grant received....seeing the 160+ lines detailing what Granty endured in his final nine days of life is a very tough pill to swallow.  Every test, pharmaceutical dispensed and procedure is detailed, serving as a way too vivid reminder of that last week.  It's hard not to get sad when you realize everything that my little guy went though, but at the same time, I'm reminded of what a trooper and a fighter we was.  He personified perseverance.

At least United Healthcare opens at 5am PT tomorrow - - I'm hopeful that I can have everything resolved by 9am...once and for all!  

My consummate trooper....a fighter to the end.

In the Spirit

Several weeks ago, Alexa and I were at Michael's buying a birthday gift for her friend, and the Halloween display caught her eye.  In particular, she was fascinated by a Halloween-themed gingerbread cookie kit - I think she saw it as her opportunity to imitate Buddy Valastro (aka - The Cake Boss).  Since Damon and Alexa have a shared interest in cake decorating and 'The Cake Boss,' I figured it would be a good opportunity for them to live out their cake decorating dreams together.  I was able to defer her request to buy the kit for a few weekends, but yesterday she decided she could wait no longer and begged to make the kit today.  Unfortunately Damon left for Las Vegas this morning, so their shared decorating experience will have to wait until the Christmas gingerbread house; the Halloween house is a nice practice run.

I was very pleased to find the kit included a pre-assembled house, eliminating the toughest part of making a gingerbread structure, so I was more than happy to let Alexa indulge in her decorating dreams.  I began to read the instructions, but quickly realized they were moot for this activity.  I simply dumped the decorating candy into bowls, stuffed the piping bags with icing and left Alexa to her own devices.  For nearly 60 minutes, Alexa worked diligently to decorate the house, tossing aside the examples on the box and using solely her imagination as a guide.  The piping was obviously her favorite part, as demonstrated by the heavy piping on the roof and globs of piped "bushes" next to the house.  This was the perfect Sunday activity for her.

When Alexa proudly showed me her finished product, I made the mistake of calling it beautiful.  She immediately corrected me, telling me the house isn't beautiful at all...it's spooky and creepy.

Hard at work piping icing onto the front of the house.

Very proud of her finished work - a "super-creepy" house.

Diagnosis Day....One Year Later

Today marked the one-year anniversary of Grant's exact cancer diagnosis...a day Damon nor I will ever forget.  After what seemed like the longest few days of our lives - the time between the biopsy and meeting o Phoenix Children's "Tumor Board - the two of us sat in Granty's room on the eighth floor and listened to the Chief of Oncology (a neuro-oncology specialist) explain Grant's condition.  I don't think the two of us have ever been so attentive to someone in our entire lives, as I took meticulous notes and Damon recorded the conversation on his iPhone.  I'm sure delivering news like that is one of the most difficult aspects of an Oncologists' job, but Dr. Etzl's delivery attained the perfect balance of information and the human element of the situation.  We immediately knew Grant was receiving the best care possible, a nice feeling of reassurance in a difficult time.

Soon thereafter, I quickly assigned myself with the task of attaining as much information about pilomyxoid astrocytomas as I possibly could.  I tried to follow the advice of the Oncology team - stay off the Internet! - and relied largely on scientific articles and medical journals for information...my sister Terri (with her PhD in Genetics) was a big help.  When I began college, I had intentions of becoming a neonatologist, so this was my opportunity to dabble in the medical field; it was unfortunate the situation was so close to home.

One year later, I can say that this was one of the most eye-opening experiences of my life.  Until I was personally affected by cancer, I had no idea about the prevalence of childhood cancer and, sadly, the limited research and resources to understand and cure the disease.  

The past year has been a learning experience that has profoundly affected my life in a positive way.  Good things have and will continue to happen because of Granty's life and ordeal....

Bright-eyed and alert after meeting with Dr. Etzl.

Happy 16-Month Birthday!

Today marked Granty's 16-month birthday, so once again he was on my mind a bit more than usual.  However, unlike the normal sadness that sets the tone on the 3rd of each month, today was a pretty good day and was more upbeat.  I'm sure the St. Louis Cardinals 9-1 victory over the Pittsburgh Pirates contributed to the tone of the day, but some happy reminders of Granty also improved the mood.

Since Alexa's swim class is now on Tuesdays, our Thursday nights are completely free....it's kind of a nice change!  Damon also had the day off today, and when he called me at 3pm to ask about dinner plans, I quickly made the decision that the three of us would go out to eat tonight.  Even though Alexa no longer has swim, I will continue to take Thursday nights as a cooking night off :)  We quickly settled on The Cheesecake Factory for dinner, a nice option when we're not craving anything in particular and an easy place to take Alexa.

While we were driving to dinner, the song "Gone Gone Gone" came on the radio, and as usual, Alexa squealed and began to belt out the words.  I know the thoughts of all three of us immediately drifted to Granty and what "should've been" today.  When the song concluded, Alexa poignantly said, "I think Granty's waving at us!"  What a perfect thought......

Her simple statement and imagery of our little boy helped to set the tone for an enjoyable evening - I know Granty was looking down and smiling upon the three of us, knowing he's constantly in our hearts.

Happy 16-Months, Baby Boy!
(He always sported a Cardinals onesie on playoff days!)

Sleepy Genes

Apparently sleepy-looking four year-old pictures run in my genes.  When Alexa brought home her school pictures, I could not stop laughing at some of the similarities between our pictures.  We both have the sleepy eye look, complete with undereye bags, nailed....although I will admit my eyes had bigger bags.  Alexa was pretty entertained by the comparison, but she was quick to point out that her dress is "way prettier" than the 'Little House on the Prairie' dress that NeNe made for me.  Nothing against my mom's handiwork, but I would agree that a Nordstrom dress trumps the homemade frock.

Although I cannot deny Alexa as my daughter in the looks department, she inherited a lot of Damon's facial features....Granty on the other hand was a lot more Niehoff.  He was a skinny little guy, but he had a lot more roundness to his face and eyes.  Alexa is a mini-me in the personality department, but I think Granty would have been "boy Connie."  I distinctly remember a PICU doctor commenting one time that Grant's eyes looked a bit sunken, to which I quickly defended, "They're not sunken - they're just deep set!"  Only a mother would jump to her son's defense (and quite frankly my own!) like that.

It'll be interesting to see how baby #3 looks - - I know Damon's hoping his Armenian genes (excluding the hairiness - haha) finally come through in his offspring.  As we jokingly refer to Alexa and her Armenian cousins, we could have our own little "Salt & Pepper" set!

Only a few more months until our newest little girl makes her appearance.....I'm just hoping she can avoid the fateful four year-old sleepy school picture!

Future blackmail photo?
We'll see if her high school friends make fliers with this picture...lol