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~

Tuesday, November 25, 2008

A cart full of blessings

Ok, by a show of hands, who has ever gone to the grocery store hungry? Uh huh. Keep them up there if you have gone to the grocery store so ravenously hungry that you walked every single aisle in the store and had to have at least one of everything you saw. Yeah, that's what I thought. Been there, done that, huh?

It goes a little something like this:

"Ohhhhhhhh, Ramen Noodles, haven't had those since college. I need me some of them. Oh, Oh, Oh MALLOMARS! Come on now, who doesn't love Mallomars?! Woohooo!!! Tangerines! I feel a bit stuffy, Vitamin C would do me good. Yeehaw, olives stuffed with jalapenos! It's like a party in your mouth! Ohhhhhhhhh, Cream of Shrimp Soup. Tasty! Lookie here, French onion dip! Yea, baby! Oh boy, Doritoes..."

You get the idea. Heck, you have been there. (By the way, you can put your hands down now.)

So, I go in to buy a gallon of milk and came out with $200 worth of stuff that will sit in my cabinet until one of my kids says, "Hey, Momma, we are having a can drive at church/school/Girl Scouts. You have anything I can take?" Whew, what a relief; now I can do something with the Cream of Shrimp Soup and the olives stuffed with jalapenos.

(The Mallomars? I ate the Mallomars. All of 'em. By myself. I don't even have guilt -- a horrible stomachache perhaps, but NO GUILT I TELL YOU!)

When Mandy was first diagnosed, praying, sitting down and talking to God felt like that. It felt like standing in the grocery store being hungry, wanting one of everything, and not knowing where to start or how to even come close to articulating it.

Sometimes, my prayers were a lot less like prayers and a lot more like a fight. I would yell, in my head, and sometimes out loud, in my angriest voice, "God, FIX IT NOW!!!!"

Sometimes, it was pleading and begging and through my sobs: "Dear God, please fix it."

No matter the emotion behind the delivery, it was almost always the same prayer. Most of the time, I couldn't be more specific. It is just all wrong. Please fix it.

Help her.

Help Alannah and Zachary.

Help Ronnie.

Help me.

Help us.

Just, help.

To say that I don't still have days of being angry at God would be a lie. To say I don't still have days of pleading and begging and offering up my own soul, and making a thousand promises if he would just heal Mandy, would be a lie. I do have all those days, and more.

The thing that has been so powerful through this journey has been that never-ending presence, even in the darkest of moments; even when I am so angry I can't see straight; even when I am so scared that I am blinded by my fear; even when my heart is breaking and I am blinded by my tears, I feel it. I know He's there.

I'll be honest: Sometimes, that infuriates me. How can You possibly watch what these kids go through and NOT DO SOMETHING?!

My prayers aren't always answered in the way I would hope. Obviously, my first prayer is "Make this all go away, make it not real, make it just be a bad dream."

And it's not.

It is real.

But, it has been nine months and we are still standing. Mandy is dong beautifully and we just got the best news we could have hoped for at the last meeting of the tumor board. We are still standing side by side, the five of us. Alannah and Zachary are being stronger than they should ever have had to be, and they are doing it with willing hearts and beautiful smiles. We have people standing around us, more people than I can begin to count, standing beside us and behind us to hold us up when we don't feel strong enough on our own.

Would I rather not need them? Oh yeah.

Would I rather just be able to go be that support and show that love to someone else? OH HECK YEAH!

Would I rather not have to see any of my kids dig so deep for strength and courage? Oh, I would give my right arm for that.

But, this is our life. And, it is a blessing that we are being given the support, the tools and the strength with which to live it.

Because the funny thing about going to the grocery store hungry: Even if I didn't come out with what I went in for, I came out with something that will nourish me and keep me sustained until the next time.

May your Thanksgiving be full of blessings, love and hope.

Love to all~

Saturday, November 22, 2008

Nothin but net!!

When I was in 7th grade, I was already 5-foot-10. As such, it only stood to reason that I would be an awesome basketball player. Or so the coach told me. I put down my neon nail polish, jelly bracelets and Men Without Hats cassette tape long enough to go try out. (It was the 80's; don't judge me.)

I didn't want to try out, much less play. Trying out and, heaven forbid, actually playing? Well, that meant sweating and ewwwwww, why would I want to do that, for pete's sweet sake? But the coach swore I would rock, so what the heck. I like to be a rock star, so I gave it a shot.

I made the team. They listed me at 6-1 on the roster (to further intimidate the hapless opponents, of course) and put me in at power forward and waited for my natural-born talent to appear.

And waited.

And waited.

And waited.

Height? Yeah, it does not necessarily equal talent.

To say I was wretched on the court is an understatement of epic proportions. I was merely a mix of too-long arms and too-long legs clumsily galloping down the court. Imagine a hog-tied giraffe being rolled down the court, hurtling towards other players like they were bowling pins, and you have a pretty good idea of the artistry in motion that was me on a basketball court.

And give me the ball? Not a good plan. There were girls who could sink that darn ball every single time. Like it had a magnetic attraction to the goal. Oh yeah, baby, nothin' but net every single time they touched the ball. My shots apparently had a magnetic attraction to the air below the hoop. When my shots were "nothing but net," that meant "nothing but the outside of the net." My husband, a former sportswriter, describes me euphemistically as a "foul-prone defensive specialist."

Mandy is no danger of ever being mistaken for a basketball star. She is TINY for her age. Most girls her age are a full head taller than her. The tumor and the NF have caused her to be growth hormone deficient. This after being saddled with genetics from her height-challenged, 5-foot-7 father. She is travel-sized.

But, trust me when I say Mandy just scored a big, huge goal with nothin' but net! A 40-foot 3-pointer! A double-pump, reverse, two-handed slam-dunk!

Girlfriend is a superstar! A rock star! An all star!!! And any other accolade you can come up with to give her.

We drove down to St. Petersburg yesterday to see her Neuro-Oncologist about the whole two- different-sized-pupil thing she had going on two days before. It has gone away. It is believed to just be an idiopathic late response to eye drops used to dilate her eyes a few days before. Good news. No worries there. And no last-minute CT, thank goodness.

While we had her doctor there, I asked how much shrinkage we have gotten since starting treatment on the optic glioma.

Remember, sometimes, the most you can hope for with these tumors is stable. You often don't actually see them shrink.

It has shrunk!!!!!!!!!

By how much, you ask?

Can I get a drumroll, please?

10 percent!!!!!!!!



That's the extent of my math skills, but so not the extent of my exclamation marks!!!!!!! That is huge and we are thrilled!!!! Thank God for answered prayers!

She does think the spot in the left parietal lobe is most likely another glioma, but it will be treated by the chemo we are already doing for the optic glioma. So, that's good that nothing changes on the treatment course.

My baby girl? She may be tiny, but people, she is made of TOUGH!

Love to all~

Wednesday, November 19, 2008

That Scarlet... she knew stuff

So, tomorrow is, in fact, another day. Well, today now. But, today is another day doesn't have the same fabulous, old Hollywood ring to it. But, today is definitely overall better than yesterday.

I got a phone call from Mandy's neuro-oncologist today at clinic. She presented Mandy's case to the tumor board again. They looked at numerous scans and compared them. When you look at most recent scan to most recent scan (which are only 8 weeks apart) there appears to be no different and merely stable.

BUT, when you compare the scans at the beginning of treatment to the most recent scan of a few weeks ago there is actually SHRINKAGE TO THE OPTIC GLIOMAS!

Can I get an amen???!!!

So, how about that?

This is big news!

Take moment and happy dance on that one, applaud and say thanks.

But wait, there's more. No ginsu knives for ordering right now, but, the tumor board also really feels that the areas of previous concern in the brain stem and the ventricles are areas of myelin vaculozation. This is a common brain anomaly in NF patients. It is essentially inconsequential. In the simplest most possible terms, myelin is the covering of nerves in the brain. Myelin Vaculozation means there are holes in the myelin. Overall, something that heals itself later in life. This is great news as we had been previously told that the areas in the brain stem and the ventricles were potentially catastrophic.

So, fabulous news there. Then there's the other area of concern, in the left parietal lobe. Nobody really knew what to make of it. It is presenting differently than the myelin vaculozation. So, it's not that. Could be a hamartoma, a benign tumor associated with NF, but doesn't look much like that either. It could be another low grade glioma, but no way to know for sure without doing a biopsy, which we wouldn't do. So, no real information there.

One other oddity today, Mandy's right pupil is smaller than the left right now, well all day today, actually. Odd, following yesterday's possible concern about lack of response of that same optic nerve. The right is also the side on which the optic glioma is the largest. So, because I am me, and paranoid and made of crazy, I am worried about this. They did dilate her pupils yesterday, so it could be leftover from that. I truly doubt anything else could escalate quite that quickly, but, like I said, I am made of crazy. So, I called her neuro-oncologist and left a message about it since we didn't see her at clinic today. Like I said, I am sure it is nothing. But, I prefer to bring Doctors into my particular brand of neurosis, so I have company.

Her blood work was all good today and chemo came and went with out a hitch. She is sleeping it off right now.

So, for the most part, very good news today. The rest? Well, we will just cross those bridges when we come to them.

For now, I am shedding my grump of yesterday and any uncertainty of today and cloaking myself in the good of today, cause there was a lot of it. Mandy has not stopped smiling and is feeling and acting great.

Geez, crazy much?

Ok, seriously. I was just about to hit publish on the above post. The phone rang from the clinic. Apparently, her neuro-oncologist called back and wants to do a CT to look at the ventricles. Ok. That caught me totally off guard. I didn't get to speak with the Doc. So, I'm not sure if it was because of the different sizes of pupils today, but I would assume so. I am sure they are fine. If it was fine two weeks ago at scans, I am sure it is fine now. They will call to schedule that tomorrow.

I'm going to bed.

Love to all~

Tuesday, November 18, 2008

Terrible Two's

I try. The vast majority of the time, I try, to keep my chin up, a smile on my face, a spring in my step or any other stupid faux happy cliche you can come up with. I try to just keep going, keep believing, keep knowing all will be okay.

I do.


I promise.

Yeah. Then? Then there's today. Today? Not so much with the happy, positive, chin up thing. Tomorrow I will do that again.

But, today? Today, I want to throw a terrible 2's esque, feet kicking, fist pounding, "It's not fair" screaming, nasty, ugly temper tantrum.

Now that you really want to come over and be my friend....

Mandy had an appointment with her neuro-opthamologist today. Yes, there is such a specialty. Nothing horrid by any stretch came from it. But, he thinks the right pupil is possibly becoming less reactive than the left. This could be an early sign of degeneration or damage to the optic nerve.

In short, it could be a sign that her vision could start faltering soon in that eye. We have been very lucky, given the size of her tumor that her vision has remained stable. And it still may.

But, today, I am going to drink my mocha my friend was brave enough to bring me. I am going to concede and be a temper tantrum throwing, I want my little girl to be healthy and not have to deal with all this, screaming, "It's just not fair" grumpy Mom. 'Cause acting like a 2 year old would be unbecoming for a woman of my age.

Tomorrow back to the chin up, smile on the face, spring in my step thing.

After all, tomorrow is another day, or so says Scarlet anyway.

Love to all~

Saturday, November 15, 2008

Shameless Bragging

If you are someone who is offended by people who brag about their kids, you might wanna stop reading. If you think that parents who get all, "Oh, look at this picture/video/trophy of my kid," you might wanna stop reading.

If however you are all in for a hearty game of, "Look how cool my kid is," hang out for a second and watch this. This is Alannah getting a Superior for her viola solo. It is the highest rating you can get if you don't have your piece memorized. Yea, her!! :-)

It was taken with a phone so the sound isn't fabulous, but you get the idea. I am asking Santa for one of those FLIP digital camcorder things for Christmas, though Santa is pretty darn broke this year so I don't see it happening. But in the meantime, here is Alannah Willis and her viola performing, "Telemann Concerto in G Major 2nd Movement."

Heaven help me when he's 16

For purposes of this episode of As the 4th Grade Turns, the role of "Cute little girl in his class that Zachary has a crush on" shall be called Britney.

The scene: It is a cloudy, cool fall Florida afternoon. Momma is cleaning the deck. Zachary is playing outside.

Zachary: "Momma can I go call Britney?"

Momma: "Sure, buddy, go right ahead."

Zachary heads in to call Britney. Momma continues cleaning the deck. About 2 minutes pass and Zachary reemerges outside.

Zachary: "She wasn't home."

Momma: "So, buddy, have you told her you like her yet?"

Zachary: "No, not yet. But, I flirt with her everyday. I am going to wait until Valentines Day to tell her though. I am planning on giving her a note with some chocolates and maybe a cd of love songs. That always does well. Works like a charm and never fails."

Momma sighs and shakes her head and goes back to washing the deck.

Stay tuned for our next episode of As the 4th Grade Turns. Cue the credits and closing music.

Wednesday, November 12, 2008

A day in the life

Wednesday is marked by most folks as "hump day." The middle of the week. The point at which you can see the weekend from here if you stand on your tippy toes and squint. Maybe it is the day you start bugging your spouse about the Honey-Do list for Saturday afternoon. Maybe it is the day of your big weekly staff meeting. Maybe it is the day you start talking about where you will spend Friday nights after work happy hour. For us, every Wednesday, for as long as we can see into the future, is chemo day.

Our day starts with getting Alannah and Zachary dressed, ready and out the door to school. We apply EMLA cream, a numbing agent, to the skin over Mandy's surgically implanted port. This eases discomfort during port access.

First thing at chemo Mandy gets weighed, measured, temp, blood pressure and pulse taken.

Then it is off to an exam room to have her port accessed. This is when the nurse will put the needle in her port that will be used to administer the chemotherapy medications.

Mandy takes the Glad Press and Seal off of her EMLA cream. (Yup, that's right, Glad Press and Seal, it's not just for food anymore)

Then her nurse cleans the port area for 30 seconds. Mandy HATES the smell of this stuff.

Mandy has a counting thing and picks a number less than ten to count to before the nurse is allowed to touch her port. The nurses absolutely rock and are incredibly patient waiting for Mandy to reach her magic number. One of her very favorite nurses, Miss Lisa, has the needle hidden in her hand, waiting for Mandy to finish counting and be ready.

Then in goes the needle. This is no fun, but Mandy is so brave and strong.

Then we draw the blood to do the counts that we are so dependent on. These counts tell us if her immune system is strong enough to handle the chemo that day or if she needs additional blood product in a transfusion.

The needle is taped down to keep it secure and germ-free. The tape going on is a cakewalk. The tape coming off is a nightmare. Thankfully, there is an adhesive remover that helps immensely with that part.

Today, all her blood work was fine, so it was down the hall to the infusion room. The process of delivering all the medications takes about an hour and a half. Sometimes she plays with the awesome staff, like her other very favorite nurse, Miss Emily.

Sometimes, she just watches a movie.

She gets several medications through her port: An anti nausea medicine, her chemo meds, a saline flush and a heparin flush. This process takes about an hour and a half. The tape is removed, the needle is removed and we head home.

Today she had a particularly upset tummy and needed an extra anti-nausea at the end. That one is a narcotic and leaves her pretty strung out.

The thing about chemo day: it's just what she does on Wednesday. If you look closely at these pictures, what do you see? She's smiling, she's laughing. She loves these nurses and these doctors. A kid in chemotherapy is just that, a kid. It is a crummy, nasty situation, no doubt, but, it just becomes "the new normal," as much as it can be.

When Mandy first started treatment she was incredibly angry and upset. She would cringe every time it seemed like anyone might touch her. She was like a wild animal sometimes, angry and scared and defensive.

She bounces in there now, being her loud and happy self. She hugs all the staff hello and then hugs them all goodbye. She laughs too loud, jokes and grins. Even when she feels lousy, like today, she always has a smile for these people.

She may be an 8-year-old brain tumor patient. She may be an 8-year-old Neurofibromatosis patient. She may be an 8-year-old chemotherapy patient. But that is not what defines her. That is not the whole of her. She is an 8-year-old little girl who has been forced into a situation that called for extra strength and extra bravery. Just like pretty much every other kid who has been put into this situation, she has taken it and made it her new normal. She has found a way to be okay with it. She has found a way to find joy in the most unjoyful of situations and has truly become a hero, embodying strength and hope and bravery.

Love to all~

Monday, November 10, 2008

Why do we call them sleepovers when there is so little sleep?

A sonic boom has nothing on a roomful of 8 year old little girls. A sonic boom setting off every car alarm in a three county area has nothing on a roomful of 8 year old little girls. NOTHING!

I had five of em.

In my house.

At one time.

They were loud and giggling and squealing and screaming and just having an absolute blast! I am surprised we didn't get the cops called on us. I can just see that conversation....

"Ma'am, we have received numerous complaints about a raucous party here. Care to explain what's going on"

"Well, sir, my daughter is having a sleep over birthday party with five of her little 8 year old girlfriends."

"Ma'am, you are going to have to keep it down or I am going to have to haul you downtown."

"Ohhhhhhhh, score!!!!"

and then in my best feigned sad voice, "Ronnie, I just got arrested. Gotta run! Have fun with the slumber party and see ya tomorrow! Love ya! Bye!"

Sadly, no cops showed up to take me away. Though I am certain I could have heard them from county lock up(or is it lock down?) anyway. Seriously though, they had a ball. We had all the fixin's for your basic slumber party

There was pizza, followed by cake.

followed by present opening.

Then it was on to dancing. The girls warmed up with the Cha Cha slide.

This was followed up by an American Idol contest. Ronnie was Simon, Alannah was Paula and I was Randy. "Yo, yo, yo...wat up dawg? You worked that Hannah Montana joint OUT, man! That was HAWT!!"

There were some heartfelt ballads,

some rockin iCarly tunes.

It was then time for the full band to emerge, complete with back up singers, a lead singer and a lead guitar player. Lemme just say, my ears will never be the same.

Then it was time to tuck everyone in with the new Tinkerbell movie on and hope they fell asleep.

Everyone had a blast and it was so great to see Mandy just being a little girl, not an 8 year old brain tumor patient. The best part was, I got to see a whole lot of this dimple and this grin that make my heart sing.

I think the night can be deemed a success, except by Zachary.

"Why did you let her invite sooooooooo many little girls over here?"

Love to all~

Friday, November 7, 2008

Picture them all in their underwear

It has been a stressful week. Chemo happened a day early this week to accommodate an MRI on Wednesday. Then just for a little added stress, Mandy was running a low grade fever for a couple of days. Poor baby even got a flu shot this week. Good times.

The good news: chemo went well. Her blood counts were good. She was a little sicker than usual afterwards this week, but nothing a little Zofran can't handle. Her MRI went well also. The results are in and everything was stable and unchanged. Everything is the same size and everything that enhanced with contrast before still does now. I still continue to hope for shrinkage. But, as I have said before stability may be the best we can hope for.

Mandy had a rough week this week. I wasn't sure if I would be able to make it to the Evening of Hope tonight. The Evening of Hope is a dinner put on to help expand the Angel Program, a network of businesses that step up and volunteer to assist families in medical crisis.

Here's where this gets scary for me. I have to speak. Not like, "Hi, my name is Natalie. It's nice to meet you." Nooooooooooooooo, I have to speak. As in speech. With a microphone. And possibly a podium. To three hundred strangers. Well, okay, I will know probably 20 people there, so to 280 strangers. But still? YIKES!

I have no problem it quite well. Do it a lot. But this.....oh my. It's hard to cut your heart open and lay it all out there. In front of strangers. 280 of them. That's what I am trying to do in this speech. Did I mention the 280 strangers?

So, here is what I have written to share with these people tonight. Hope I don't puke. Or sob like a two year old. (I so am not a pretty Demi Moore in "Ghost" kind of cryer. No, people, I am a snot running down my face, red eyed, puffy ugly cryer.)Or fall out of my dress.(Could happen.) Or trip and go splat headed up to the podium.(I'm darn near 6' tall. My husband is 5'7". Suffice it to say, I don't wear heels all that often. Or forget what I am supposed to say and stumble around on my words like a drunk.(Cuter when actually drunk than when merely a sober idiot.)

Here goes....tell me what you think.....

My youngest daughter, Mandy has a brain tumor. That is still a very hard sentence for me to say. My 8 year old daughter has a brain tumor. It is a horrible string of words to have to put together.

Mandy is a beautiful little blonde bombshell of a girl. She loves all things girly. Pink is her be all, end all, very favorite color. She would always rather wear a dress, the pinker and sparklier, the better. She loves music and loves to sing. She is quite shy, until she gets to know you and then you can’t shut her up. She has a voice that projects across a crowded room. You never have to look for her, just listen. And you will always find her. She always has an opinion. She has a momma's heart and loves to baby stuffed animals and babydolls. She has a brain tumor.

She was born with a genetic condition called Neurofibromatosis Type 1, also called NF. This is a disease that means her DNA lacks a tumor suppressor gene, so anywhere in her body tumors can grow at the nerve endings. In Mandy’s situation, all of the tumor growth has been centered in her brain. Most of the time, the tumors are benign, however sometimes they are malignant. In Mandy’s case, we are fighting a tumor on her optic nerve called an optic glioma and numerous tumors in her brain stem area that are benign, but have the potential to be catastrophic because of the location. She is currently 8 months into a chemotherapy regimen that is slated to last for approximately two years. Once a week we drive up to All Children's clinic where she receives IV chemo drugs through a surgically implanted port. These drugs make her feel miserable, the disease robs her of her chance to be like every other kid, robs my other two kids of the chance to live like every other family, I can no longer work because of the time demands associated with this battle. Our life sometimes feels like it is not our own. It is a dark and often lonely journey. I have often been left with a feeling of being alone in a crowded room of looking out and seeing normal life progress and being shocked that it continues.

That being said, this journey has brought us blessings, enormous blessings that without it our family may not have had the privilege of seeing. Every time you turn on the news, there is 15 minutes of mostly tragic and depressing information, then weather, then sports, then Leno. What doesn’t make the news is the little miracles that happen every single day. I wish it did. I wish for everyone to know the goodness of the world that we see in all of you. I wish it was shouted from the rooftops the good work that organizations like the Angel Program do every single day. I wish everyone knew, how much impact those acts of kindness and love have on people’s lives. We have been personally blessed by people’s love and kindness and generosity, but even bigger than that is the blessing of seeing all the good work being done, to all sorts of families. It is not WHAT people do, be it a huge donation of money or goods or a donation simply of time and love, but THAT they do. The knowledge that people care, that people are there, that people support your battle, that means the world. It truly isn’t what people do, it is that they do that means the most .

Other than the obvious, major illness takes two huge tolls on the families dealing with it, money and time.

We came home from about a week in the hospital back in March and our pool pump had died. Under most circumstances, at most, it might have been a curse word muttered under your breath, a swift kick to pump and then a call to the repair man. For us, that day, it was just one more thing that we couldn’t deal with. We had neither the money nor the time. A friend told me about the Brandon Foundation and sent Liz and Natalie our information. These two dynamic women showed up, armed with love and faith and asking for a to do list. In a matter of a week, our pool was fixed, the water balanced and just in time for Mother’s day. Our family and another family battling pediatric cancer spent the day splashing and playing and relaxing. What an amazing gift that was. The knowledge that someone, or several someone’s cared and wanted to help was the biggest blessing of all though.

We needed a ceiling fan installed in my oldest daughter’s room. Again, no time and no extra money. Again, in swooped an Angel from the Foundation, who said, we can’t fight the medical battle for you, but let us take this one. And just like that it was done. This same angel took it upon himself to adopt every other maintenance item around our house that needing tending to. He even went so far as to drop off a gallon of milk one day when I needed it. A simple gesture, sure. But, on that day. At that moment. Not something I could accomplish myself.

All of these things could not happen without the support of all of you. We keep a website about our daughter, to keep people updated about not just her, but of our other two children as well. The headline at the top of it reads, “One little girl battling NF and optic glioma, with an army of love behind her.” The Angels from the foundation, Natalie and Liz and all of you who support the great work the Angel program does are part of that army. It is a huge army encompassing family, friends and even strangers. From the bottom of my heart, I am so thankful for all the Angel program has done, for us and so many other families like ours.

It is easy to make a difference. Your investment may be small. The difference it makes is huge. A well-timed gallon of milk can do as much good as anything else.

I would give anything to fight the battle for my daughter, to take away the pain, the fear, the horrible drugs that are meant to heal but leave so much havoc in their wake. I would give anything to take that on for her. I can’t. I can’t take that battle from her anymore than you all can take the battle from us. I can hold her hand, love her, support her and make sure she absolutely knows she is never, ever alone. Everyday, the work that you all do does that same thing for our family and all the others you help. You can hold someone’s hand, bring a dinner, weed a flower garden, make a mortgage payment, help with groceries, the list goes on and on. But you can take a bit of their burden and carry it for them. Liz, Natalie and the angels who have helped our family, have made sure to let us know we are not alone. They, and all of you who support the Foundation and the work they do, are all part of that army of love behind our little girl. I thank you for that, from the bottom of my heart.

Love to all~

Sunday, November 2, 2008

This post brought to you by candy and Canon

8 kids in costume+
5 adults+
1 pitcher of sangria+
a ton of candy=
a happy Halloween!

I am lazy tonight, so rather than struggling to come up with something worthy of reading, I will leave you with some pictures.

Hope your Halloween was way more treats than tricks!

The whole motley crue of children

It was like herding cats to keep all these kids together. Herding cats, people.

Trick or Treat!!!!!!!!

Everybody was in costume!

The evening was a treat for everyone!

We have a stressful week ahead, including an MRI day and a chemo day, so it was great to kick back with good friends, hang out and relax.

Love to all~

Thursday, October 30, 2008


Counts were beautiful yesterday. Mandy got chemo. She felt pretty rotten last night, but, is doing better today. We did add oral albuterol(the syrup, not the inhaled kind) for a week, because she has some slight wheezing in her left lung. Gotta stay on top of that and not let it become anything.

Zachary was on oral albuterol once when he was about 4. It made him completely certifiably insane. It wasn't like funny, silly just don't wanna go to sleep high strung. Oh no. It was like studying for finals, 5 pots of coffee, half a box of No Doz, just this side of rehab kind of jittery. Good times. I am told that is par for the course, so we shall see how she handles it.

In other news, Ronnie is being held captive in Canada. Poor guy has been sitting on a plane, on a runway, unmoved for 4 hours. They have been offered warm beverages and stale wraps and told to sit tight. He is getting a tad bit grumpy. Hopefully, he will be home tonight. He is flying home through Phillie of all places. Not like there won't be a few Tampa folks trying to get home from Phillie today. So, yea, I expect to see him tomorrow sometime. That is, if he doesn't get arrested for civil disobedience in Canada today.

Otherwise, all is well. We are getting fired up for begging for candy, I mean trick or treating tomorrow.

Love to all~

Sunday, October 26, 2008

Sugar high

This weekend has been all about candy, Halloween, birthday cake, costumes, chocolate, sugar, presents, cake walks, festivals and candy. Oh, and? There was some candy and some cakes. In case you didn't pick up on that theme.

So, in a chocolate coated nutshell, here is the late week and weekend in review:

Thursday: Mandy's birthday. Daddy made a surprise trip home to be able to be here for her day and she was thrilled. We gathered up Alannah and Zachary from school and came home and opened presents. Girlfriend does love her some present opening.

We went to Carrabba's for dinner, with thanks to our dear friends the Garcia's for a gift certificate! Mandy had her very favorite cheese ravioli, though being right after chemo, she didn't eat as much as I would have liked. But she had a ball. We wer joined by our friends the Mayhews and Tyler from the Children's Cancer Center.

Mandy and her buddy "Ty Ty" from the Children's Cancer Center

We came home and had birthday cake, chocolate with chocolate frosting. Mandy made a wish and blew out the candles.

Eventually, that sugar and present opening high wore off and we all went to bed.

Friday was the Halloween Carnival at Zachary and Mandy's school. Alannah dressed as a lazy teenager. That was a stretch for her to get into that character, lemme tell ya. NOT! Zachary was an alien. 'Nuff said on that one. Mandy had a couple of costume options and opted for the black cat. A magician and all their friends were on hand at school and they had a ball.

Aliens gotta eat too.

Ever wonder what teenagers do when you drag them to an elementary school party? Why, they text, of course.

Saturday night we went to Trick or Treat street and scored yet more candy and sweets and junk we really don't need. Mandy was pretty unnerved by the noise, and crowds so we were quick in and out. But they stayed long enough to get an excessive amount of sugar laden goodies.

That brings us to today and the Fall Festival for the Children's Cancer Center. Mandy opted for the Hannah Montana costume for this event. It was a ball and the kids bounced in bounce houses,

had some face painting,

rode a train,

and met some animals from Lowry Park Zoo.

They ran around, were generally goofy, laughed a lot, danced a little and had a ball. Thanks as always to the CCC for a great day!

Just for giggles, they had a cake walk today. Each of my kids came home with a 9"x13" cake. Because the leftover birthday cake and the candy from trick or treat street wasn't enough.

Mandy hung in there like a trooper this weekend and proved that with a sleep schedule like a 3 year old(14 hours at night plus a 3 hour nap during the day) she can party like a rock star when she needs to.

Love to all~