Wednesday, December 31, 2008

5 things...

Y'all already know the less than ideal parts about our 2008. It's no secret that in February, our world came to a grinding standstill when Mandy showed significant disease progression and started chemo.


That? Pretty much SUCKED!

And to be honest, I don't really remember much of February. Or March. By April, I start to have some vague recollections.

So, rather than bemoan the crappy parts, I want to wrap 2008 up in some warm, smooshy Willis goodness.

It's a choice. What you do with your life. It really is. Into everyone's life a little (or sometimes a-whole-freakin-lot) of crap must fall. You can hate it, rage against it, cry about it and scream about it. God knows, I did all of those, and still do. Repeatedly. And often. And at the end of it, I try really hard to find the blessings. Sometimes, I succeed. Others? Yea. Not so much. But, I keep trying.

So, in an effort to teach this to my kids, and myself, I gave everyone in my house an assignment: Write down five good things about 2008. No peeking at your neighbor's paper. It had to be from the individual heart. No external inspiration or paraphrasing allowed.

So, I give you The Willis Top 5. Five good things that we'll remember from 2008. Youngest to oldest:

1) The Children's Center
2) My sleepover birthday party
3) Poodle
4) Miss Emily and Miss Lisa
5) Flight Camp

1) I met Nathaniel
2) The Children's Cancer Center
3) I get to spend more time with Daddy
4) Mandy's feeling better
5) Awesome hockey games

1) I redid my room with my own money
2) Discovered vintage hats and used them in the room redo
3) String Camp
4) High school
5) All the people at the Children's Cancer Center

1) That I had my jaw surgery in January and that it alleviated that whole serial-killer-trying-to-escape-my-skull-with-an-ice-pick-via-my-eye-thing.
2) I am going to cheat and get a two-fer on this one....our support "staff." First, the staff at the Children's Cancer Center. The most amazing gift they give is not hockey tickets, it is not weekend getaways, it is not even the unfailing love and support they offer. It is the gift of being able to, if only for a moment, make cancer and all that goes with it not be the foremost thing in our minds. Secondly, the amazing staff at All Children's Tampa Hematology/Oncology clinic. They have taken a wretched, terrifying situation and made my daughter smile, absolutely every time it was even remotely possible. She loves these people, as do I, and for that my thankfulness knows no bounds.
3) The amazing kindness we have been shown over and over in a million different ways by our friends, our family, and people we don't even know personally. It would take me far too long and far too many words to adequately express my thanks for your support and your love and your never ending ability to just be there for us.
4) The gift of slowing down and appreciating every single moment, every single breath, every single smile, every laugh, every hug. I take nothing for granted. I savor every moment. You just never know when it will all change, when life will be turned on it's ear. Relish it.
5) Ronnie, Alannah, Zachary and Mandy. The reason in my life. For just about everything. It just doesn't get more simple than that.

RONNIE (who took the whole 5 bullet points assignment and got a bit wordy with it. But it is sweet and lovely and so it all gets to be on here exactly as he wrote it).

I will confess that I didn’t exactly receive this assignment with great enthusiasm. Frankly, there is not a lot I’d like to remember about 2008, given that it took a turn for the unpleasant on Day 49.

But I am nothing if not loyal and dutiful and responsive to an assignment.

And when forced to reflect (if only for a few minutes — the deadline was pretty tight), the reflection reveals that there were actually many things to treasure about this year.

In no particular order:

THE KINDNESS OF STRANGERS and not-so-strangers: Friends, neighbors, area businesses, people we barely know, people we don’t know ... We’ve been on the receiving end of a lot of goodness this year. The list is long and I’d miss my deadline — not to mention a few names — if I was to try to list it all here. You know who you are. “Thank you” isn’t enough, but it’s the best I can do given the constraints of disk space and the English language.

ONE PARTICULAR NAME that I didn’t know before this year is etched near the top of my heart now. Mary Ann Massolio, the executive director of the Children’s Cancer Center, is a bright, bright light illuminating a journey that might otherwise be very dark. She and her staff have taken in our whole family — not just Mandy — as five of their own. My children have learned a lot about how to be good people in the last year, and Mary Ann has been a fabulous example to follow.

I HAD SOME GREAT NIGHTS IN DENMARK with some good friends; a few nights that lasted well into the next morning. It was a tremendous example of the power of music, red wine and friendship, and how that power crosses international boundaries. It was great to do something overseas other than work, and it was great to see real-time examples of another culture going about normal life. I’ve been greatly enriched by my travels in many ways, but none more powerful than getting to just hang out and listen to tunes and have a good time with some good people.

I KEPT MY JOB. Given the state of the economy and the state of the industry in which I work, this is more of an upset than you might think. A lot of people more qualified than me didn’t get through 2008 without a visit from the Career Grim Reaper. It’s been a grim reminder that there are few guarantees in life, and a confirmation of how important it is to give my best to every day.

MY WIFE. This is not an upset; she was also the best thing about 2007, 2006, 2005, 2004, 2003, 2002, 2001, 2000, 1999, 1998, 1997, 1996, 1995, 1994, 1993, 1992, 1991, and 1990. Seeing it all written out brings new meaning to it. Realizing that 2008 is just another four digits in a journey that has covered a lot of ground and is about to cover a lot more, well, that gives me everything I need to look forward to four more digits, and four more yet, and four more ...

So, yeah, 2008 is a year I’d rather not repeat. But as it turns out, that doesn’t mean I want to forget.


May your 2009 give you more love than your heart can hold, enough laughter to make your cheeks hurt and a never ending, never failing hope for tomorrow.

Love to all of you from all of us~

Sunday, December 28, 2008

Cheap attempt to distract you from the fact that I am not writing...

No time yet for a real post. But thought I would see if merely plying you with cute pictures rather trying to string together a coherent, much less deep and meaningful Christmas post would suffice for now.

It was a great holiday, filled with love and noise and messes. Truly, Mandy running around like a crazed Christmas maniac on Christmas Eve was music to my ears. She had chemo that morning and was just thrilled with all that Christmas Eve meant that night. Hearing and seeing all that joy and excitement in my kids was the best gift I could have ever asked for.

Now, on with the pictures that will hopefully distract you enough from the fact that I really didn't write anything of substance to go with it!

Zachary had a very Lego Christmas

Alannah is 14. iTunes gift cards are always cause for joy and glee for her!

Everybody got presents! Mandy loved delivering Santa's goodies to Poodle!

Mandy's favorite gift was a Mommy I Gotta Go doll. And yes, she does just what you would think she does. Seriously, she has a little toilet with faux pee and and poo in it that you get the unfettered Christmas joy of flushing away. I know. Repulsive, right?

I was more than a little disappointed that it did not come with a bidet. How on earth is this poor doll supposed to wash her hands????? In the sink? Puhleeze! Where is the creativity and originality in that?

I hope your holiday was filled with peace in your heart, joy in your home and love in your life!

Love to all~

Wednesday, December 24, 2008

Merry Christmas to all!

The bloodwork was good. The chemo was administered. The cookies are baked. The presents are wrapped. The ham is bought. The lights are hung. The tree is up. The family is here. The children are excited. Let Christmas begin...

May your holiday be filled with peace, love, joy and hope. To each and everyone of you who have helped make this Christmas overflow with blessings of a million different kinds, thank you. We are truly blessed and thankful this holiday season for so many things.

We love you all.

Merry Christmas to all and to all a good night~

Wednesday, December 17, 2008

Holidays are here, ready or not

We finally got around to decorating, way later than usual this year. But, it's done and lovely!

The kids always love going through the decorations and talking about each one. My Grandma, cause she really is just the best, has given me a dated ornament every year of my life and now does the same for the kids. So, no traditional glass balls or color coordinated haute couture trees in our house. Every ornament has a meaning and a story and part of what makes our Christmas wonderful is retelling each and every one of those stories every year.

Amazingly neither this

or this

or even this

ended with a toppled tree or an ER trip. So decorations up + no injuries= holiday success!

Today was, of course, chemo day. Mandy made counts today, by the hair of her chinny chin chin. But, she made it. Her ANC has to be 750 to get chemo. Hers was 770. This has been a steady downhill slide for about the last month. Her platelets were still fine at 364 (oddly high, go figure). Hemoglobin was 9.6, which is lowish for her. She is showing signs of that with fatigue, pallor, irritability and complaining of being cold all the time. Chemo was a little rough this week on her tummy. Chemo next week is on Christmas Eve (YUCK!). That is, of course, assuming she makes counts. The other possible scenario is they may have to hold chemo and we may come home and be on lockdown due to low counts.

I'm just kind of in the yucky mommy place. It stinks she has chemo on Christmas Eve. It stinks she has chemo at all. It stinks she doesn't feel good and doesn't have energy. It just plain stinks.

Mandy's philosophy? Well, it is clearly stated by this sign on her door.

Love to all~

Thursday, December 11, 2008

HO, HO, HOly cow these guys are huge!

The Christmas season just keeps coming here.

Tonight, Alannah had her school orchestra concert and did a whole lotta this

She goes to a performing arts high school (think FAME)You're humming the song now aren't you? "FAME! I'm gonna live forever...I'm gonna learn how to fly...") The concerts at this school are right on par with a lot of professional symphonies and are very impressive.

Daddy and I did split duty tonight so while he was watching Alannah do this,

Zachary and Mandy and I were at the Children's Cancer Center Christmas party. We were surrounded by big guys tonight...Santa was doing gift giving duty with the kids. Mandy was somewhat trepidatious about the big guy, as usual. Though Zachary had no qualms at all. He walked right up and whispered, "LEGOS, please!" in the big man's ear.

And as if that big guy wasn't enough. There were yet more big guys! The defensive line from the Tampa Bay Buccaneers was there tonight. All of the players were great. Though, I officially have a favorite Bucs player now. Kevin Carter, No. 93, was so good with the kids and just an absolute sweetheart with Mandy. She took one look at him in all of his hugeness and handed me the helmet to have him sign. She had this look of, "Dude you outweigh me by like 300 pounds. I am not asking you to sign ANYTHING! I am outta here!" He got down on the floor with her, complimented her dress and told her how pretty she was (he obviously knew the way to Mandy's heart) and soon, she was warming up to him. Too cute!

I was trying to get this picture and didn't have a wide enough angle to get Zachary standing in front of Greg Peterson, No. 96. So, while I was jockying around trying to get a better angle. Greg just picked Zachary up (exerting about as much energy as it takes me to pick up a Mallomar) and said, "Does, this work better?" Yup, that'll do just fine!!

One would generally not think of a support group for cancer patients and their families as a fun place to hang out. And yet? Sometimes, it is. The staff is amazing. They have become family on this journey with us. The other families are a rock for each other. We hope together, we cry together and we laugh together. I can't imagine going through this without the Center and everything and every way they have supported us and loved us. We love them all and are so fortunate to have such an amazing organization here.

Hope you are enjoying your own holiday chaos while still being filled with the peace of the season.

Love to all~

Wednesday, December 10, 2008

'Tis the Season

I know, I know.

It has been over a week since I updated.

Feel free to send me a virtual rap-on-the-knuckles with a ruler. (I didn't actually go to Catholic school, but I've heard stories.)

Either way, my apologies. I have the same excuse that all the rest of you do. Apparently, Christmas? It comes right after Thanksgiving. Like say, oh, now-ish. Go figure, huh?

So, in our house, this time of year means two things:

1)It means 9.3 million Christmas plays and musical concerts. Apparently, in addition to the usual run of surprising developments in the last few weeks, I am also emerging as a stage mom. Again, who knew?

2)My kids have all fallen victim to SAH, otherwise known as Seasonal Affective Hysteria. You might be familiar with it. Children who are normally of above-average intelligence and who are generally well-behaved LOSE THEIR DAMN MINDS because they are drunk on Christmas spirit. (Does anyone have a tranquilizer dart or two I can borrow? Just askin'.)

So, medical stuff first. Essentially, no news is good news. Her blood counts are sort of trending down-ish, but not in an alarming way. Her ANC was 960 (low-ish) today and Hemoglobin 9.8 (low-ish) and platelets were 364 (high-ish). Chemo has gone off without a hitch for the last two weeks. She was loud and happy and enthusiastic today and had a ball playing UNO with a volunteer. So, all is well there.

So, for phase one of "what-happens-this-time-of-year," Zachary had a very theatrical week. He was cast as Linus (dressed in shepherds clothes) in the church Christmas play. He had to learn and recite alllllllllllllllll of Luke 2. The chapter, not just some verses. I was just so darned proud of him, I can't stand it!(See there? That's the stage mom thing.) He did great, never messed up once and looked poised and confident.

Mandy was originally supposed to be cast as Mary. But she was switched to a role as an angel, which was GREAT with her, because, to quote the diva herself, "The angel has a MUCH better wardrobe."

With four shows over three days, I had plenty of time to practice my new stage-mom persona. It's not as much fun as it sounds; it's basically a whole lotta time sitting backstage and in the green room watching Joseph, some shepherds and some wise men play Nintendo DS.

The angel shared her DS knowledge with Mary in the giving spirit of the season.

And for phase two of what-happens-this-time-of-year, Mandy had had just about enough by the last performance. I should have known. She gave me clues and I just was not paying close enough attention. I blame myself. They were not even subtle signs. For instance, "Ya know, Momma, when Zachary says And Lo the angel of the Lord came upon them and said..., well, I am the angel. Shouldn't I say that part?" But, nooooooooo, I didn't see it coming. Suffice it to say, if that child is on a stage, someone darn well better be looking at her! So, in an effort to bring some audience love her way, she decided to play the world's happiest angel.

So, she started giggling.

And giggling.

And acting all coy and flirty.

And giggling.

She smiled, she giggled some more. I am pretty sure she batted her eyelashes at one point.

So poor Zachary is up there being all, "Behold, I bring you good tidings of great joy..."

And the crowd? Well, they are laughing, guffawing and chuckling at the happiest little angel you ever did see.

She's a thief, my daughter. An angel-wing-wearing, coy-acting, audience-flirting, giggling little scene-stealer.

Mercifully, Zachary was still feeling the good tidings of great joy when he exited stage left. He was happy and pleased with his performance, but did ask, "what on Earth was so funny?" He took it well when I explained his sister was full of, um, uh, Christmas joy.

This was a fortunate break because had a fist fight broken out between the angel and a shepherd ... well, that's just not very Christmas-y, now is it?

Lather, rinse, repeat on phase one. Zachary's school Christmas play. He played Danny Elfman (composer of such great works as the theme to Batman, among others.) He was a hoot!! And now he desperately wants to take acting lessons at the Performing Arts Center. Yeah, being a stage mom doesn't pay well enough for me to pull that one off!

Tomorrow, we are double-booked with Alannah's orchestra concert and the Christmas party at the Children's Cancer Center. Alannah will be in one place with Daddy seeing to phase one of what-happens-this-time-of-year. Zachary and Mandy will be with me at the party allllll full of phase two of what-happens-this-time-of-year.

Love to all~

Monday, December 1, 2008

Hand washing 101

A conversation you never want to have with your 8-year-old-immune-compromised-currently-receiving-chemotherapy-beautiful-although-apparently-not-all-that-classy daughter:

We are at the home of my good friend Miss Mary Ann, who is the director of the Children's Cancer Center. We are getting the grand tour of her beautiful home. Mary Ann, my friend Angela, and I are all standing in the master bathroom discussing the VERY pink marble vanity and bath tub.

Mandy comes bounding in to use the restroom, with Angela's daughter in tow. In they go, to the little water closet where the toilet is. As everybody knows, 8-year-old girls like to travel in herds to the bathroom, whenever possible. (Come to think of it, they never really outgrow that tendency).

Door closes. Giggling. I can only assume they answer nature's call. More giggling. Out they come and head out the door. Much giggling.

This is where it gets ugly.

"Mandy! You need to come back and wash your hands!" Giggling stops.

"Momma, I did already," in a voice laced with annoyance.

"No, honey, you didn't. I am standing right here and you did not wash your hands."

Somewhat indignant now: "YES, MOMMA I DID!"

I taught her how to be indignant. So, in an indignant tone that puts hers to shame, "Mandy, NO you did NOT. Here I am. Here is the sink. Been here the whole time. Both the sink and I. And neither the sink, nor I, nor the other two mommies standing RIGHT HERE saw you wash your hands. No water, no soap, no hand towel. THERE WAS NO HAND WASHING! SO, get back in here and wash up before you leave this bathroom."

Girl, allllllllllllll full of attitude stomps over and opens water closet door.

"I did too wash my hands! I washed them in the low sink, just for kids, RIGHT THERE!!!!"

A low sink just for kids? That's kind of odd. Sweet, but odd. Why would there be a low sink for ... ?

And then she points.

Not at a fancy low sink made just for kids. Nooooooooooo.

She points at




My daughter just washed her hands in a bidet!!!!!

OH OH OH OH OH!!!!!!!!


Now, Mary Ann's house is cleaner than just about any house in the free world. She is acutely aware of the immune-compromised status of many of her shortest guests, and the house reflects that in all of it's clean and shiny glory! But seriously, I can't imagine she plans for hand-washing in the bidet, for pete's sweet sake!

My daughter washed her hands in a device my son calls a "butt washer."

Me? I am a crappy mom. But my daughter? She is apparently taking the crappy to a whole new level.

We is high class, people. High class, I tell ya'.

Love to all~