Thursday, May 26, 2011

Our Scholar

"I care about feelings. I care about love and truth. I care about Mother Earth. I don't care about being bad, I care about being good. I protect the whole house, even the dogs and Jenny-Jane. I don't care about cars, I just care about people." --Fisher Hower, Age 5, May 26, 2011, on the day of his preschool graduation. Just a conversation over lunch, I swear, this is all him.

Yes, this is a preschool graduation ceremony
He's a special one, this little guy

Monday, May 23, 2011

I Wish Your Wish




Scottsdale Museum of Contemporary Art is featuring a distinctly beautiful installation by an artist named Rivane Neuenschwander called "I Wish Your Wish".  

That's Jenny-Jane standing in front of one of the three large walls covered in silk screened fabric ribbons.  Each ribbon contains a wish.  

The observer is invited to read the wishes written on the ribbons and to choose one that resonates with them.  You are then invited to write down your own wish on a small slip of paper, roll it up, and insert it into the empty hole remaining from where you took your ribbon.  Your wish will then be silk screened onto a new ribbon and added to the exhibit.  

Jenny-Jane picked a ribbon that said "I wish I could fly."

The one I added said "I wish my cancer never returns."


Saturday, May 21, 2011

Tipping the Scales

I was talking with my Mom the other day about how amazing everything is in my life right now, and how terrified I am that it all could come crashing down like a house of cards with one little ache here or bad test result there.  And yes, I do know that this could be true for anyone.  No one is immune to an unexpected illness or accident (sorry to point that out). The key here is unexpected.  When you've had advanced cancer, you kind of expect it to rear it's ugly head again.  I can hear Nick's voice in my head asking "why do you expect it to come back?  Even your doctor doesn't expect it to come back."  I KNOW it's unhealthy thinking, but I can't shake it.  My life is so wonderful, so happy, so fun right now, and I don't want to miss any of by having to endure those grueling, sickening treatments.  I've seen how it takes me out of life, puts me on the sidelines and I don't want to go there again!


It's possible that I'm freaked out more than normal because things are so wonderful, or maybe things have always been wonderful and I'm just realizing it now.  Either way, I'm definitely a freak, and things are good so I'll try to focus on that.  We had a very positive meeting with my radiologist, Dr. Brachman, this week.  He is thoroughly pleased with my progress and doesn't want to see me for another six months, very encouraging.  I did hit him with my favorite question, "You know, I felt perfectly normal when I was diagnosed last year. How do I know that my cancer hasn't taken over another organ and I just can't feel it?"  Unfortunately, his answer did not provide me with much relief.  We were told that the best we can do is  blood tests, physicals and asking how I feel.  Not much.  He also said this during my exam which made Nick and me giggle "tumors come back where they started or somewhere different."  Insightful.  


So let me tell you of the fun we've been having around here.  Tonight Nick and Fisher are at the club for a little golf course camping party. He just texted me about 10pm that they just finished an outdoor movie and are eating a second dessert.  An accompanying photo showed Fisher chillaxing with his crush from preschool, Reagan.  So Jenny-Jane and I had the night to sit on the couch in jammies to watch "Punzel" (that's Twisted, the new Disney Rapunzel movie) and eat frosted circus cookies.  She snuggled and even sang in her sweet voice "I have a dream" with the main character.  My heart melted.  


Today we took the kids to the Scottsdale Museum of Contemporary Art and out to lunch. Last night Nick and I had a wild date night that included sushi, Vietnamese coffee, an art-house movie at a super groovy downtown speakeasy and a last stop at a very gay outdoor bar.  We talked about all our summer plans which include a quick weekend in Manhattan Beach with our hilarious friends the Bergens, a week home to Milwaukee where the kids will attend Nature Camp at the Audubon Society, and a week back East to visit Nick's Mom, Dad and our dear friends the Mosers.  


This Thursday Fisher "graduates" from the fab preschool he's attended for three years. Next weekend we are celebrating Nick's 41st birthday with a wild day/night at a local new Indian casino. Seriously, I could go on and on.  I often wonder if I would still feel this energized about my life now if I hadn't lived through last year's trial. I'm guessing probably not.  I've been given this chance to really embrace and truly appreciate all the treasures in our lives, but as I've mentioned, it comes at a cost.  With the jubilation and joy, there is the ever present fear and dread.  My job is to keep the scales tipped in my mind so that the beast doesn't overpower the beauty.  I'm trying, really trying.


with love on a Saturday night,
k



Friday, May 13, 2011

Luft Balloons

It feels almost cruel to follow up my wonderful Mother's Day blog with this one, but I opened this door, and I feel like I need to close it.  No, there is nothing wrong with me, except for a heartache.  


I am writing to say that the little boy I wrote about two posts ago, Ronan Thompson, died early Monday morning, the day after Mother's Day.  I know many people have been following his story of Neuroblastoma, an agressive childhood cancer, for many months, and some people were just introduced to his fight through my blog.  I heard from friends all over the country who said they cried themselves to sleep after reading Ronan's mother's heartfelt account of her son's last moments on Earth.  


She wrote "I curled up beside him.  I whispered little things in his ear and sang to him.  His breathing was becoming softer, his little feet were becoming so cold.  The nurse patted me around 3:20am. Ronan was ready to leave.  I said to her 'Is he gone?'  She replied 'Almost'.  We kissed Ronan goodbye and that was that.  His little heart just stopped."


She recounts bathing Ronan's little body after he passed and dressing him in his favorite Small Paul monkey pants and Star Wars t-shirt.  She says she kissed his lips repeatedly because she knew she would never be able to do so again.


I know, I'm sorry.  I'm crying too, and have been for days.  Again, I don't know this family, but can only imagine the pain they must be feeling.


Here's the kicker, today would have been Ronan's fourth birthday.  It seems our entire central Phoenix community is heart broken for this family.  


In lieu of a large memorial service, his mother has asked that on Sunday at 7:15pm, balloons be released into the sky to fill it with love for their son.  Our family will be doing so from our front yard, and I have a feeling we will see hundreds if not thousands of balloons aloft above our city.  


I expect Ronan's obituary will be published this weekend, and I will attach the link to my blog*.  To view his mother's heartfelt blog in it's entirety, visit www.rockstarronan.com


with love,
k


*www.legacy.com/obituaries/azcentral/obituary.aspx?n=ronan-sean-thompson&pid=151003928



Sunday, May 8, 2011

A Magical Mother's Day

Mother's Day Tea- hat courtesy of Fisher

This kid's got skills!

Doesn't get much better!

Spear hunting in the gorgeous Tucson desert

"Big Eyes"

Family resemblance?  Enjoying the singing cowboy.
Yeah, I'd definitely say this was my best Mother's Day ever.  And I'm not even comparing it to last year's debacle.  As you may remember, just one year ago I was fresh out of my double mastectomy surgery and readying myself for my very first round of dose dense chemotherapy the morning after Mother's Day.  I remember it being unseasonably hot and Nick deciding to spend the day shaving the dogs.  I remember retreating to my room while my sister Diane and Nick's sister Wendy tried to tame my wild children.  God, it was all so off kilter.  

So even without the painful comparison, this year's Mother's holiday was stand alone fantastic.  It started Friday with the Mother's Day Tea at Fisher's preschool.  Truly, it was just the sweetest thing.  All the moms were given wild hats to wear and the five-year-olds showered us with homemade gifts, love songs, treats and even a pedicure.  My left toes are silver, my right toes are maroon and not a cuticle was left unpainted.  At least Fisher didn't grab the bottle of bright blue polish, oh, that unfortunate mother across the room. While I drank in every second, I couldn't help but think, all the mothers are here, what do kids without mothers do on special days like this?  I am NOT going to leave my kids in the lurch.  I'm just not.

So then Nick had a trick up his sleeve for the weekend.  Saturday morning we piled the kids in the car and drove to Tucson to spend two days and one night at the gorgeous new Ritz Carlton resort just north of the city in a breathtaking mountainous canyon.  It was magical.  Except for the scorpion.  I could have done without that three-inch vicious monster scurrying into our room.  But, in Nick and Fisher's style, they captured it, speared it (we normally do not condone killing bugs, but this was a big exception) and it now resides next to Fisher's bed in a ziplock.  

Back to the magical.  We experienced a Native American man playing a flute high up in the mountains at sunset, a real cowboy crooning classic old-west tunes over dinner on the patio, an all family s'more making party (with blissful homemade marshmallows, graham crackers and chocolates, none the less), and a night filled with the brightest stars I've seen in years.  Plus the kids were unearthly well behaved.  

Nick and Fisher made spears out of arrow-heads, dental floss and cactus skeletons, and the kids got to hold snakes and observe gila monsters.  Jenny-Jane and I flounced in the pool for hours while Fisher and Nick tacked the 200+ foot long water slide at least two dozen times.  I know, crazy!  All all this in just over 24 hours.  Pretty amazing.

I found myself crying tears of relief and joy as our little family walked through the mountains with that eerily peaceful flute music floating across the canyon.  It was all so beautiful, so perfect, so freeing.  My heart was overflowing with pure gratitude for my life, my husband and my children.

So, to summarize, this Mother's Day was off the charts fabulous. Last Mother's Day?  Well, let's just say it was a sure bet that this year was going to be an improvement.  Well done, family, well done.

Happy Mother's Day to my Mom, and all the many wonderful Moms in my life!
with love
k

Tuesday, May 3, 2011

Cancer Sucks

There is a beautiful little boy with big blue eyes dying just a few short miles from my home tonight and his mother's words are pulsating in my head.  Ronan Thompson is three years old with Stage 4 Neuroblastoma, a childhood cancer.  Ronan is at Ryan House, a hospice for children, just north of St. Joseph's hospital, in walking distance from my house. His mother wrote in her blog yesterday "He gave me the biggest smile today and told me that he loved me to the moon and back.  So what if he cannot walk anymore because his legs hurt so badly.  I am his mom, I can fix anything. That is my job and I refuse to fail."  Her pain is so raw, that it's almost unreadable. "Call the f'ing psych ward because that's where I am going to end up if this all goes down the way everyone thinks it is going to."  The truth is, it is unknown for how much longer her son will survive.  


I don't know this family, but I have friends who do.  I felt an immediate connection to the mother once I read her blog.  She is frank, she is honest and she has no fear of cursing.  She has documented every detail in Ronan's diagnosis and treatment, right up to this moment where she is quite visibly, cracking.  I don't know a mother who wouldn't.  It hurts to be a bystander, to be in the same city, with something so incredibly horrific happening just down the street.


From the first day of my own diagnosis, I said one thing, "Thank God this is happening to me, and not to one of my kids."  I feel almost bad, like I had it easy compared to this family.  I think I cried harder today reading Ronan's blog, than I did for myself over the past year.  


If you have the time and a big box of tissues near, I invite you to visit www.rockstarronan.com.  Cancer sucks and childhood cancer brings the unthinkable to a whole new level.  Cancer awareness raises money and money finds cures.  Thank you for supporting me by reading my blog, and in turn, all families in crisis due to this insipid disease.


with love
k