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.

Really.

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~

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.

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~

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~

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 talking...do 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~

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~