Monday, August 24, 2009

Yesterday... not the Beatles version

I swore I would never be her.

You know the one.

The one you haven't seen, well, ever, as far as you can remember.

She's the older lady at the family picnic. The smell of her gardenia perfume arrives just before the screech of her voice. "It seems like only yesterday I was changing your diaper! You had the cutest little butt ... just like a couple of dinner rolls!" She pinches your cheek with her chubby fingers, completely disregarding that you're 19 now and might file assault charges. You try to smile, and hope the smear of macaroni salad she left on your cheek isn't as noticeable as it feels. She waddles away, but the gardenia stink isn't going anywhere anytime soon.

Of course, this was made all the better if your teenage boyfriend du jour was there with you. Better still if she waddles back so she can tell the story about how you got bored once waiting for your mom to show up after a nap and took your poopy diaper off, exposing your cute little dinner-roll butt, and used the diaper's contents to express yourself artisically on your bedroom wall.

Good times.

And though, as I have aged, I now see the merit in -- and have every intention of -- sharing every ridiculous and embarrassing anecdote with my kids future boy- and girlfriends, I swore I would never do the "It seems like only yesterday ..." part.

But, holy cow...my kids start school tomorrow as a sophomore, 5th grader and third grader. And I'll be damned, but it DOES seem like only yesterday.

I remember being a sophomore...ohhh, do I *remember* being a sophomore. And that? Is one scary thought now that Alannah is that age. She is a beautiful girl, inside and out, with a concrete definition of right and wrong. I hope and pray that all we have tried to teach her sticks with her through this time in her life. The next few years is the time when it becomes evident whether or not all those talks took. You know the ones on drugs, drinking, sex, smoking, responsibility, never getting in the car with someone who is drinking, you can talk to me about anything....etc, etc, etc. It is our job now to hold her really, really tight, while letting go a little and to let her know that we all make mistakes at that age, but to pray silently and fervently that none of those mistakes are catastrophic for her.

Fifth grade...the beginning of that inner circle of hell to parents known as adolescence. Zachary is a really good kid, with a heart of gold. But, I have funny feeling his snarky sense of humor(I don't know where he gets THAT. *snort*) is going to get him beat up, or something close to it, sometime in the next 3 years or so. He has a rock hard exterior and is a big mush underneath it all. It is our job to raise a MAN, and all that entails. That is not always easy. It is so much more than teaching him to open ladies doors.... Thankfully, he seems to know a lot of it by instinct. Adolescence is a horrid time. He would never let you know it, but his heart is easily broken...I hope and pray that his adolescence is kind to him. AND to us.

Mandy has been through more by the time she has entered third grade than most people go through in a lifetime. In some ways she is incredibly mature and wise beyond her years. In other ways, she is very young and somewhat behind her peers socially. She can talk a nurse through accessing her port in the most grown up of ways. She can explain to a doctor that she can have propofol as an anesthesia, but not any inhalant due to malignant hyperthermia. But, being 8 comes a little harder for her sometimes. She is an amazing little spirit, with a mothers heart, the strength of an army and a bossy streak. Soon, her only job will be to be 8, I hope. And our job is to try to reteach her how to do that.

So, I swore I would never be her...that it-seems-like-only-yesterday lady. And though I won't say it out loud, as I send them all off into the world tomorrow, I will think, "It seems like only yesterday that you fit in the crook of my arm and puked breastmilk on my shirt at least 8 times a day. I hope the world is kind to you, my little dinner-roll-butt babies."

I will only think those things.

I won't say them out loud.

Because, really? To launch into the whole it-seems-like-only-yesterday speech, I would need macaroni salad. Plus, I don't waddle and I really don't like gardenia perfume. But, I WILL tell every ridiculous and embarrassing anecdote at any and every opportunity. Parenthood DOES have some privileges after all.

Love to all~

Friday, August 21, 2009

A big favor

Could you pretty please take a second to click here and vote for Mandy's poodle? She stands a real shot at this!! Mandy is LOVING watching those numbers climb. Besides, seriously, could you find a cuter picture?



You can vote once per day/per computer until midnight pacific time on Sunday. The weekly winner gets $500 and has a 1 in 12 shot at a million. Thanks so much!!

Chemo went well this week. Down to only 6 treatments until a well deserved break!

Love to all~

Monday, August 17, 2009

Michael Perez

It was cold, as it always was at Lightning games. But our room was warm and loud. We were in a suite with two other pediatric oncology families. There were at least 10 kids running around and eating and yelling for the hockey game.

I sat in a chair next to Mandy, kind of watching the hockey game and kind of watching an adorable little brown-haired boy, probably about 2 years old. He was running up and down the stairs of the suite with his Momma close behind, spotting him to make sure he didn't fall.

So cute. So happy.

My heart melted.

I turned to talk, or more accurately, listen to Mandy and felt a pat on my knee. The adorable brown haired boy stood in front of me with his arms stretched up to me. The universal, "Pick me up" sign to mommas everywhere.

My heart melted.

I looked to his mom for permission. She nodded and smiled.

So, I leaned over and scooped him up onto my lap. He snuggled into my lap like he had known me forever. He stayed on my lap for most of the remainder of the game. I darn near sprained an ovary holding this adorable little man.

When we left the game, he hugged me and kissed me with the sincerity and love that only a child can.

My heart melted.

Every time I was lucky enough to see Michael after that night, he always had a hug and a kiss and a smile for me. For everyone. Most of all his momma and his big sister.

I got a call from his mom yesterday. She was calling from the funeral home. She was making arrangements to bury that beautiful little boy. He had fought long and hard against the tumor that invaded his brain. Some things can't be beaten.

My heart broke.

I am honored to have shared a few moments of that precious boy's life. He was always an angel; now he has the wings to prove it.

Rest in peace, Michael.

Love to all~

Thursday, August 13, 2009

Contest for Poodle and Mandy

A certain little girl and a certain big white fluffy Poodle are entered in a cute dog contest. The weekly winners win $500 and are one of 12 entered to win a MILLION DOLLARS!

Ok, seriously, the $500 alone would totally rock. Plus...I dare you to find a cuter picture than this one. So please, go here and vote. We have until 8/21 at midnight PST and vote for them!!



Love to all~

Wednesday, August 12, 2009

And then there were seven...

We are down to seven...one more chemo in the bag today and only 7 more to go. Counts were good and all went smoothly.

I am swimming in a sea of bipolar with the whole soon-to-be-off chemo thing. One part of me is absolutely thrilled. It has been a long year and a half. Her body needs a break. That's the sane and rational part.

Then, there's the insane and irrational part that is beside myself terrified to take away the security blanket that the chemo is. Crazy, huh? It's okay to say it. I have become one with my crazy. We don't want to keep letting that benevolent poison that chemo is, drip into her body once a week if she doesn't need it. But. What if she does?

The sane side of my brain... the happy, lollipop tree and cotton candy cloud side of me is just freaking giddy! No chemo means more time in school, which thrills her. It means the chance to get back to dance or gymnastics or cheerleading or whatever other girly pursuit she has interest in. It means an immune system in recovery. It means a return of her stamina, her color, her hair. It means a step towards a more normal childhood for all of my kids. It means so many things. It means a great reason to throw one damn big party!

But, then there's the dark side, the things-we-don't-talk-about side. When visiting THAT side... the crazy and irrational side of my head, it looks a little something like this. We have been giving chemo for so long, what if she comes off and whatever we have been subduing surges back to life and throws it's own big party and invites its friends and family? What if that thing in the left parietal lobe, that no one is really sure about, is in fact something formidable and has been waiting quietly for a chance to take hold?

How quickly will her counts and immune system recover? How long before she recovers? Will her neuropathy go away entirely? How accurate is that new research that shows frequent rapid growth post treatment with Vinblastine? What will her long term effects of chemo be? How long before she ends up back in chemo again? Will she end up back in chemo again? Why do birds sing so gay? Why do fools fall in love? What is the square root of 1683.94? Did I remember to turn off the curling iron this morning? What IS that funky smell in Zachary's closet?

Yea.

Welcome to my crazy.

Come on in, have a seat, make yourself at home. But, you will have to speak up so I can hear you over the voices in my head.

Again, I am asking to please send some extra love and prayers to the Damm family.

Love to all~

Friday, August 7, 2009

News...

So, when your Daddy is in the newspaper business and you decide you want to make a newspaper, no construction paper/marker combo will do. Nooooo, in our house when you decide you want to make a newspaper, Daddy (former award winning newspaper designer turned newspaper software geek) gets allllll They-are-following-in-my-footsteps giddy.

So, Daddy gets to "test" his work software on the most demanding customers around...an 8 year old girl and a 10 year old boy. This is software used by some major newspapers worldwide and now by the staff of Dogs Daily



There are real stories on there (make sure to enlarge it so you can read them) written by the reporters and photography by Zachary. Subscriptions are available and advertising inquiries are being accepted. :-)

(Larger versions of the stories below - click to enlarge):







In other news, I am headed to Texas for a few days tomorrow to help out at our friends, the Damms. Send up some extra prayers for them, please...they are amazingly good people.

Love to all~

A music lesson

My house is never quiet. EVER. Even over the din of three dogs and three kids there is one constant. Music. There is always music coming from one direction or another. Often, from many directions simultaneously.

Alannah is crazy talented on her viola. She truly has a passion for it.



So much so that she just went to Strings Camp and came home after two weeks and said, "Ya know, I think I would like to go to a different camp next year. That one is too strict."

Me, all in my best reprimanding Mommy voice: "Honey, it is a fun camp but you are supposed to work. It is not all fun and games there."

Her: "No! No, What I mean is they would be all forcing us to go play football or swim or whatever when all I wanted to do was practice."

Me, now in my best smart voice: "Huh???"

Cause that's totally how I would have been. Uh-huh ... no recreation for me, no flirting with the boys, nope, I got work to do, by golly. Yup, I would be the one playing till my fingers bled in a room by myself ... or, ya know, NOT.

Zachary just got a guitar. Cause what that blonde-headed, surfer-boy-wanna-be, tan-swimmer-body, make-anybody-laugh-till-their-beverage-comes-out-their-noses, always-tell-the-girls-how-pretty-they-are, charmer needed was one more reason to make chicks dig him. *snort*



So, the boy got himself a red Fender Stratocaster and can already whip out a mean Georgia Satellites tune. Not exactly an appropriate tune, "Keep Your Hands To Yourself," but Daddy justified that as the first lesson because it was easy.

Pfft, a whole lot easier to teach that song than it is to give an answer to the boy when he asks about one line in it.

"So, Momma, what IS the story about free milk and a cow?"

My response? Again, in my best smart voice, "Huh??"

Mandy dabbles a little in piano, but her first musical love is listening to it and singing it. She needs an ipod with a screen of her own in the worst way. Girlfriend loves her some music videos and can listen, sing and watch for hours.



I wrote once before how her Neurofibromatosis was diagnosed because of a song. Rather an odd form of doctoring, if you ask me, but whatever.

One of her favorite songs used to be "Bad Day" by Daniel Powter. She loved that song before she started treatment. Then, it became a staple for chemo day. We needed an Asiago bagel from Panera with 8 butters (yes, 8), a Starbucks Triple, Venti, Nonfat, No Whip, Extra Hot Mocha for Momma, with a matching Tall ice water in a hot cup for Mandy and we needed to listen to that song at least twice en route to clinic.

If you try to play that song now, she gets very upset.

"I hate that song now. It reminds me of being sick."

So, Mr Powter, we need to talk. It's not you, it's me. But, we simply can not see each other anymore. EVER. I'm sure you can understand.

She has had many favorites, over the years... Kenny Chesney "When the Sun Goes Down" or Alan Jackson/Jimmy Buffet "5 O'Clock Somewhere" and anything by Carrie Underwood. They tend to ebb and flow like favorite songs do. (And yes, I realize my girl, tends to like her some beachy,drinking music. What can I say, her Momma once called her Grandma at the age of 8 or so and sang alllllll the words to "Margaritaville." Yea...apple, tree...one falls pretty close to the other.)

One though... one, has remained constant. It always gets a "Turn it up, please, Momma."

"It's a Great Day to be Alive" by Travis Tritt
. Even as a wee little thing, she LOVED this song. Still does.

This song is an embodiment of her. She has taught me, oh so clearly, you make a choice. Every day. You make a choice, no matter what that day is or what it brings, the power to make it a great day is your choice. Gist of the song: No one said life was easy, but it is what you make of it and there is happiness everywhere if you are willing to see it.

What an incredible gift that outlook is. I am honored to watch these three little music lovers grow.

Treatments are down to 8 now! 75 weeks down, 8 to go. How about them apples? So guess what? We are going to have a party, in March, Spring Break-ish time. We are going luau theme because Mandy's first-choice wish trip was to go to Hawaii to learn how to hula dance. I nixed it though, because a) it was too far and would have been too much for her and b) I had visions of being mid-flight, needing a doctor RIGHTFREAKINGNOW and having only whales and the occasional giant squid as my available medical staff. No thank you. Someday,(when we win the lottery) we will get her to Hawaii for real, but in the meantime, it is grass skirts and coconut bras for everybody right here at home!

Think I can get Travis Tritt to come to the party and play his song for her? I doubt he has a bigger/cuter fan anywhere!

Love to all~