Several people have asked me lately how Mandy was diagnosed.
The answer to that question is a question. Which diagnosis?
All of the subsequent diagnoses started with the first one. It all started with a news story we didn't read about a song we had rarely heard.
* * *
It was Oct. 23, 2001, our baby girl's first birthday. She and I were at the pediatrician's office for her well-baby check up.
She was a beautiful and healthy little girl. Big blue eyes, no hair to speak of, but what she had was platinum blonde. And a dimple that made my heart melt every time she smiled.
I had asked every time we had been in that year about these odd birthmarks that just kept showing up. They were an odd color, the color of coffee with cream, some large, some small.
But, she was healthy, growing well, hitting all of her milestones. So, I was comfortable with the answer I always got: "They are just birthmarks."
So I asked again, just to hear them say "They are just birthmarks" one more time. What happened next was going to change things forever.
* * *
On October 7, 2001, an article ran in The Dallas Morning News. A kid country singer named Billy Gilman was to perform later that week at the Texas State Fair. His radio hit at the time was a song called "Elisabeth," about a girl who was facing some serious medical struggles.
Elisabeth was a real person; she was 21, she lived in the Dallas area, and her aunt had written the song.
Elisabeth was going to meet the 13-year-old country singer at the fair. The article noted that the singer was very excited to meet Elisabeth for the first time. "That's so weird to me," she said. "I mean, he's the big-time star. It should be the other way around."
The article went on to describe Elisabeth's illness, an illness with which she had been diagnosed as a baby and had now forced her to interrupt her college career.
I didn't read the story. Ronnie worked at the Morning News at the time; it's quite possible that he had produced the page on which the story ran. He didn't see the story, or if he did, it didn't register with him. We weren't huge Billy Gilman fans, and we had no plans to go to the State Fair that year.
Our pediatrician, however, had read the story.
* * *
"Doctor, she still keeps getting more of these birthmarks that I have asked about before. Is it anything we should be concerned about?"
I didn't recognize the face at the time -- that face that doctors make when they are going to have to tell you something you will not want to hear.
She looked at me and said, "You know what? Let me go get one of my partners. I will be right back."
Well, that was kind of odd. So I waited, thinking we were at most dealing some dermatology issue.
The pediatrician came back with one of her partners.
He made the same face. Alarm bells started going off in my head.
He said, "Let me go get Dr Head-of-the-practice. I will be right back."
Oh God. Something is wrong. The alarm bells in my head were likely audible to all by now.
Dr Head-of-the-practice walked in. He took off her diaper, he lifted up her arms, looked at her armpits and looked at me and said, "I think your daughter has cbwfgurigfsbcgducgwfbwejfv and we need to do an MRI to look for brain tumors."
And then he left the room.
That was it.
And just like that, I couldn't breathe. I had never heard the name of whatever disease he had just said.
The original pediatrician sat down with me. I remember looking at her and saying, "I don't understand. I didn't understand the word he said. Please write it down for me."
We talked for a few more minutes and she handed me a piece of paper with the word neurofibromatosis written on it.
I remember walking to the car with her. I sat down in the driver's seat and held her on my lap for I don't know how long before I put her in her car seat.
I called Ronnie at work and told him what just happened. I read him the big word off the piece of paper. I spelled it for him so he could punch it into Google. N-e-u-r-o-f-i-b-r-o-m-a-t-o-s-i-s.
One of the first hits from the search results: A story from The Dallas Morning News from two weeks before. A story about the Texas State Fair, and Billy Gilman, and Elisabeth. The second paragraph:
She's had neurofibromatosis, a genetic disorder that causes small, mostly benign growths to form on her nerves, since she was 2 years old.
* * *
I remember driving home from the hospital after the MRI thinking if I could just drive far enough away, we could somehow outrun what they were saying.
That day began this journey. Everything on that first MRI was fine. "Unremarkable," I think, was the official word they used.
It was followed by DNA analysis that confirmed she did indeed have neurofibromatosis type 1. And then many more scans, some more remarkable than others, but none more remarkable than the one from Feb. 18 of last year.
Friday, January 30, 2009
Tuesday, January 27, 2009
MUSGO
I have an Aunt who serves Musgo for dinner every so often. And though it sounds like it might be a German delicacy, it is actually something far less exotic. Truly it is combination of whatever leftovers are, well, leftover. Leftovers, after all, MUST GO. Hence the name.
So, rather than admit I have not had time to post and have therefore let a lot of stuff go unsaid, I choose to call this a Musgo post...an odd combination of all the leftovers I haven't posted in the last several days. Think of it like a healthy dinner of lasagna, with creamed peas, fruit salad, and blueberry muffins. An odd combo certainly, but it will hopefully fill you up anyway.
So, here's your lasagna:
The kids and I got to participate with our good buddies in the Gasparilla Parade. This is a crazy Tampa tradition celebrating the fictitious invasion of Tampa Bay by the pirate, Gaspar. Sounds fun right? Well, it is. Especially when you are doing it in the name of a great charity like the Pediatric Cancer Foundation.
Allll good, all the time. Right?
Riiiight.
Right up until you are told the dress code for the event.
That would be corsets for the momma's...for those of you taking notes. Oh, and boas. Cause really? If you are going to wear a corset, why not drape a boa around it?
Mandy dressed as a princess, cause well, she's Mandy.
Zachary was a pirate. Aaarrggghhh!
And Alannah? Oh yea.....she was way FIRED UP about wearing a corset. And all her friends were alllll jealous of her corset wearing weekend. Who knew corsets were so popular with the teenage set?
Her mean old momma made her wear a shirt underneath it, because...HELLO!? It's a corset! And she's 14. And frankly, that combo is significantly less palatable than lasagna and creamed peas.
We had a great time, threw a ton of beads, and other than a couple of blisters from walking in high heel pirate boots, everyone had a ball! Thanks to Les Belles Femmes Krewe for having us!!
Now on to side dishes of creamed peas and fruit salad:
There is a fundraiser being planned for Mandy's Fund, which is housed at the Children's Cancer Center. The wonderful people at Lithia Springs Elementary are putting together a fund raising booth for Mandy in conjunction with their Family Fun Fair. We will be selling a fun little gadget for the kiddos, that have been graciously donated. More info will follow soon. But for right now, save the date, 2/21, and we hope to see you there. Thanks so much to LSES PTA, we love you guys!!!
And for the blueberry muffins....Zachary has been fighting a fever for the past few days. Mandy is still dealing with the excessive fatigue that I mentioned recently. Clinic and chemo tomorrow for her, hopefully her counts will still not show anything going on. Zachary, I am pretty sure is dealing with some icky virus. Hopefully, he can kick it soon and feel better. If he doesn't seem to be on the upswing by Thursday we will head him off to the pediatrician also.
That's about it for the odd, disjointed menu...
I promise to try to be a little more eloquent next time. But hey, at least you got some cute kid pictures, right?
Love to all~
So, rather than admit I have not had time to post and have therefore let a lot of stuff go unsaid, I choose to call this a Musgo post...an odd combination of all the leftovers I haven't posted in the last several days. Think of it like a healthy dinner of lasagna, with creamed peas, fruit salad, and blueberry muffins. An odd combo certainly, but it will hopefully fill you up anyway.
So, here's your lasagna:
The kids and I got to participate with our good buddies in the Gasparilla Parade. This is a crazy Tampa tradition celebrating the fictitious invasion of Tampa Bay by the pirate, Gaspar. Sounds fun right? Well, it is. Especially when you are doing it in the name of a great charity like the Pediatric Cancer Foundation.
Allll good, all the time. Right?
Riiiight.
Right up until you are told the dress code for the event.
That would be corsets for the momma's...for those of you taking notes. Oh, and boas. Cause really? If you are going to wear a corset, why not drape a boa around it?
Mandy dressed as a princess, cause well, she's Mandy.
Zachary was a pirate. Aaarrggghhh!
And Alannah? Oh yea.....she was way FIRED UP about wearing a corset. And all her friends were alllll jealous of her corset wearing weekend. Who knew corsets were so popular with the teenage set?
Her mean old momma made her wear a shirt underneath it, because...HELLO!? It's a corset! And she's 14. And frankly, that combo is significantly less palatable than lasagna and creamed peas.
We had a great time, threw a ton of beads, and other than a couple of blisters from walking in high heel pirate boots, everyone had a ball! Thanks to Les Belles Femmes Krewe for having us!!
Now on to side dishes of creamed peas and fruit salad:
There is a fundraiser being planned for Mandy's Fund, which is housed at the Children's Cancer Center. The wonderful people at Lithia Springs Elementary are putting together a fund raising booth for Mandy in conjunction with their Family Fun Fair. We will be selling a fun little gadget for the kiddos, that have been graciously donated. More info will follow soon. But for right now, save the date, 2/21, and we hope to see you there. Thanks so much to LSES PTA, we love you guys!!!
And for the blueberry muffins....Zachary has been fighting a fever for the past few days. Mandy is still dealing with the excessive fatigue that I mentioned recently. Clinic and chemo tomorrow for her, hopefully her counts will still not show anything going on. Zachary, I am pretty sure is dealing with some icky virus. Hopefully, he can kick it soon and feel better. If he doesn't seem to be on the upswing by Thursday we will head him off to the pediatrician also.
That's about it for the odd, disjointed menu...
I promise to try to be a little more eloquent next time. But hey, at least you got some cute kid pictures, right?
Love to all~
Tuesday, January 20, 2009
It's not really that much to ask...
One of my favorite homework chores to do with my kids is to pore over stuff they have written or drawn. I get to oohhh and ahhhh and make gushy mommy over everything that they have put pencil, crayon or keyboard to.
Today, Mandy came home with a stack of stories from school. Oh goodie gumdrops!! I settled all in on the couch (wrapped in a blanket, cause as you might remember it is cold here. And I? Am not so good with the Duraflame). Mandy plopped down on my lap to join me in savoring all of her penned Mandy goodness.
One was singing the praises of pizza. She's 8, people. Pizza makes her happy. Therefore, it is worthy of as much poetic prose professing the virtues of pepperoni that she can come up with. Oh, and popcorn too. Come on, who doesn't love popcorn? And because popcorn and pizza go as well together as a great Pinot Grigio and broiled lobster. Plus, is good for alliteration practice.
The next was all about the cat.
Mandy is all "I love my cat."
I'm all, "WUTEVA!"
The cat is not one of my favorite animals, mainly because he is easily confused. This could be due in part that the cat is named Autumn, which would be fine for a little girly kitty. However, Autumn is a boy. Yea. Whoops. My bad. Alannah named him when she was about 6 and thought since he was orange and that was the color of fall leaves that Autumn would be a great name, gender be darned. So, I guess the blame is on us. We set him up to be confused.
FYI, Autumn? If you are reading this? Pile of dirty clothes in closet most assuredly does NOT equal a litter box. I will be happy to prepare a color brochure or perhaps a PowerPoint if you feel either of those would help clarify this finer point of kitty pottying habits for you. It is the least I can do, I suppose, given the whole identity crisis that I allowed Alannah to force on you when you were but a mere kitten.
Then there was one other one. I had already laughed out loud at the pizza one and scoffed at how awesome she believes the stupid cat is.
I didn't look closely enough at this cover art to brace myself.
.jpg)
So, I give you My 3 Wishes, written and Illustrated by Mandy Willis
It's not that much to ask.
Well, OK, the laptop and the cell phone are a lot to ask.
But the rest? She just wants to be a kid. She wants to get perfect attendance. She wants to go to dance. She wants to be a cheerleader.
And that?
Just isn't that much to ask.
It breaks my heart that I can't give that to her.
Today, Mandy came home with a stack of stories from school. Oh goodie gumdrops!! I settled all in on the couch (wrapped in a blanket, cause as you might remember it is cold here. And I? Am not so good with the Duraflame). Mandy plopped down on my lap to join me in savoring all of her penned Mandy goodness.
One was singing the praises of pizza. She's 8, people. Pizza makes her happy. Therefore, it is worthy of as much poetic prose professing the virtues of pepperoni that she can come up with. Oh, and popcorn too. Come on, who doesn't love popcorn? And because popcorn and pizza go as well together as a great Pinot Grigio and broiled lobster. Plus, is good for alliteration practice.
The next was all about the cat.
Mandy is all "I love my cat."
I'm all, "WUTEVA!"
The cat is not one of my favorite animals, mainly because he is easily confused. This could be due in part that the cat is named Autumn, which would be fine for a little girly kitty. However, Autumn is a boy. Yea. Whoops. My bad. Alannah named him when she was about 6 and thought since he was orange and that was the color of fall leaves that Autumn would be a great name, gender be darned. So, I guess the blame is on us. We set him up to be confused.
FYI, Autumn? If you are reading this? Pile of dirty clothes in closet most assuredly does NOT equal a litter box. I will be happy to prepare a color brochure or perhaps a PowerPoint if you feel either of those would help clarify this finer point of kitty pottying habits for you. It is the least I can do, I suppose, given the whole identity crisis that I allowed Alannah to force on you when you were but a mere kitten.
Then there was one other one. I had already laughed out loud at the pizza one and scoffed at how awesome she believes the stupid cat is.
I didn't look closely enough at this cover art to brace myself.
.jpg)
So, I give you My 3 Wishes, written and Illustrated by Mandy Willis
If I had 3 wishes, I would be so excited! First I would wish for a cell phone, so I can call my best friends. Also, I can play games on a cell phone like Brickbreaker. Then I would wish for a laptop so I can go to www.pixiehollow.com. It's a website to make a pixie. Also, I can make an email address so I can get and send an email. Last and best, I would wish that cancer and nf was not a sickness anymore. So kids can do cheerleading, dance and gymnastics. Also kids can go to school Monday, Tuesday, Wednesday, Thursday and Friday. Also kids can go to every special like dance and computer lab. These are three things I would wish for and why. What would you wish for and why would you wish for them?
It's not that much to ask.
Well, OK, the laptop and the cell phone are a lot to ask.
But the rest? She just wants to be a kid. She wants to get perfect attendance. She wants to go to dance. She wants to be a cheerleader.
And that?
Just isn't that much to ask.
It breaks my heart that I can't give that to her.
Monday, January 19, 2009
Heroes
I have never really been one for celebrity worship. I mean, don't get me wrong, I think Brad Pitt is just about the most yummy thing out there. But, generally speaking, I am not one to get all star-struck over just about anybody.
We have met more than our fair share of celebrities over the last year or so. Most are sweet and kind, and they make an effort with the kids. A few are obviously only there because their agent told them they needed some positive press. A precious few, however, really get it. They get what these kids go through. They get how much a little attention from them means to these kids.
Brad Richards is the latter of these types. Brad played for the Tampa Bay Lightning before he was traded away to the Dallas Stars. He did so many amazing things for the pediatric cancer community. He bought a suite in the Forum, just for them, decorated it all up like a kid utopia and always had it stocked with all sorts of kid food and drink. He had a bunch of fun outings and activities for his "Richy's Rascals" group.
Oh yeah, he got it. And then some.
Tonight was Brad's first appearance at the Forum as a member of the Dallas Stars. As always, he stepped up to the plate for his Rascals.
Richards is that kind of celebrity. He's the kind of celebrity that always has time for his littlest fans. He's the kind of celebrity who plays his heart out, and within 20 minutes after a heartcrushing 4-2 loss is in suit and tie hosting a room full of kids and their families, smiling for photos, signing autographs. He's the kind of celebrity who calls the people running his foundation to say, "Hey, I am coming home, get the kids tickets to the game and I want to say hi to all of them afterwards."
I can be star struck over that. He doesn't do all of what he does for the kids because he has to. He does it because he wants to. He is truly one of the good guys, and I hope he realizes just how much of an impact he has had here in Tampa.
Thanks, Kasey and Brad for a great hockey night! You guys rock!
Zachary, Mandy and Brad. Regrettably, Alannah was not feeling well and couldn't make it tonight.
And while I am being all sappy...
When Mandy first started treatment, I was so scared and was overwhelmed by the alone- in-a-crowded room feeling. I had a million questions and zero ability to be articulate and ask them. I stumbled across a website of a family whose youngest daughter was battling leukemia.
As it turned out, the hostess of this site and her family live 15 minutes from my house. She was foolish enough to answer the phone when I called all crying and terrified. Now, uur kids love each other, we have an annoying habit of finishing each others sentences, our husbands have lots of geeky things in common to talk about ... our families became fast friends.
Through the last year of Peyton's treatment and the first year of Mandy's we have cried together and laughed together.
Last week, we rejoiced together.
After over 2 years of treatment, chemo, radiation, countless blood tests and hospitalizations, Peyton is officially a cancer survivor. She finished her chemo, her port came out, and she is done! Peyton survived, and so did their family, in whole, intact and overflowing with love. It is impossible to overestimate the difficulty of any of those accomplishments.
This one? Right here? Kicked cancer's booty, y'all!
Congratulations, Mayhew family!
Love to all~
We have met more than our fair share of celebrities over the last year or so. Most are sweet and kind, and they make an effort with the kids. A few are obviously only there because their agent told them they needed some positive press. A precious few, however, really get it. They get what these kids go through. They get how much a little attention from them means to these kids.
Brad Richards is the latter of these types. Brad played for the Tampa Bay Lightning before he was traded away to the Dallas Stars. He did so many amazing things for the pediatric cancer community. He bought a suite in the Forum, just for them, decorated it all up like a kid utopia and always had it stocked with all sorts of kid food and drink. He had a bunch of fun outings and activities for his "Richy's Rascals" group.
Oh yeah, he got it. And then some.
Tonight was Brad's first appearance at the Forum as a member of the Dallas Stars. As always, he stepped up to the plate for his Rascals.
Richards is that kind of celebrity. He's the kind of celebrity that always has time for his littlest fans. He's the kind of celebrity who plays his heart out, and within 20 minutes after a heartcrushing 4-2 loss is in suit and tie hosting a room full of kids and their families, smiling for photos, signing autographs. He's the kind of celebrity who calls the people running his foundation to say, "Hey, I am coming home, get the kids tickets to the game and I want to say hi to all of them afterwards."
I can be star struck over that. He doesn't do all of what he does for the kids because he has to. He does it because he wants to. He is truly one of the good guys, and I hope he realizes just how much of an impact he has had here in Tampa.
Thanks, Kasey and Brad for a great hockey night! You guys rock!
Zachary, Mandy and Brad. Regrettably, Alannah was not feeling well and couldn't make it tonight.
And while I am being all sappy...
When Mandy first started treatment, I was so scared and was overwhelmed by the alone- in-a-crowded room feeling. I had a million questions and zero ability to be articulate and ask them. I stumbled across a website of a family whose youngest daughter was battling leukemia.
As it turned out, the hostess of this site and her family live 15 minutes from my house. She was foolish enough to answer the phone when I called all crying and terrified. Now, uur kids love each other, we have an annoying habit of finishing each others sentences, our husbands have lots of geeky things in common to talk about ... our families became fast friends.
Through the last year of Peyton's treatment and the first year of Mandy's we have cried together and laughed together.
Last week, we rejoiced together.
After over 2 years of treatment, chemo, radiation, countless blood tests and hospitalizations, Peyton is officially a cancer survivor. She finished her chemo, her port came out, and she is done! Peyton survived, and so did their family, in whole, intact and overflowing with love. It is impossible to overestimate the difficulty of any of those accomplishments.
This one? Right here? Kicked cancer's booty, y'all!
Congratulations, Mayhew family!
Love to all~
Friday, January 16, 2009
Our Duraflame had too much flame and not enough dura
It's cold in Florida.
Translation:It is below 60 outside and we are a family of wimps.
Alannah is spending the night at a friends house.
Translation: Please momma can I go stay up all night and laugh and giggle and come home and be insufferable tomorrow because I am so tired.
So, because of the aforementioned cold, Mandy and Zachary asked me to start a fire in the fireplace.
Transalation: Go to garage haul in faux wood Duraflame. Use long fancy lighter to set fire to the arrows and VOILA! I am woman! Hear me roar! I made fire!
OR....
NOT!
Tonight's version went something like this:
"Momma would you make a fire? It's cold."
"Sure! Maybe we can even roast marshmallows!"
Go to garage.
Get faux wood.
Get long fancy lighter.
Open glass doors on fireplace.
Wonder aloud if that thingamigig is supposed to be forward or backward. Decide forward looks good. Because why on earth would anyone have moved it from the last time we had a fire? That would just be stupid.
Chuck Duraflame onto little brick Duraflame-holder-upper-things.
Light arrows on paper. Careful to follow "Light here" arrows precisely.
Ahhh, fire. I made fire. I made happy kids. All is good. I am good mommy. We are Norman Rockwell painting. Sigh a deep sigh of accomplishment.
Except, I made smoke.....lots and lots of smoke.
I made every smoke alarm in my house go off.
I made Mandy cry in agony, "Mommy, make the noise stop."
I made my dogs bark. And the neighbors dogs bark. Probably made a cow moo somewhere.
I made Zachary note, "It doesn't usually do that momma."
I open every door in my house.
Now it's cold.
And loud.
And smokey.
I am now cursing Duraflame for robbing us of our Norman Rockwell moment.
Turns out? The little thingamigig? The one that would have been stupid for someone to move from the last time we had a fire? Yea. Someone? Was stupid.
Forward?
Wrong answer.
Push thingamigig back, with my bare hand. Burn hand on thingamigig, cause where there is smoke...there is fire. And fire? IS HOT! And makes surrounding metal hot. DUH! Cuss under my breath at thingamigig. Maybe I was stupid person who moved thingamigig in the first place. HATE thingamigig. Thingamigig is evil. Wish very bad mojo on thingamigig and all it's little thingamigig friends and family.
Have cleared out smoke now. Temperature in house is -20. Mandy needs therapy. Zachary is craving smoked ham. Dogs hiding in bedroom. I am terrible mommy. Even worse fire maker.
Finally I conquer thingamigig and we have Norman Rockwell moment. Mandy and Zachary snuggly reading by roaring fire. We are all too traumatized for marshmallows now.
Oh, and? Zachary and Mandy both made honor roll! They also both got to go to the reward Sock Hop for good citizenship! Yay them!! Soooo proud of them! Haven't gotten Alannah's report card yet.
Mandy is still really tired, but we are just going to try to lay low this weekend and see if that helps perk her up. She did well at school today, but wanted to lay down as soon as she got home. Not really sure what to do with the fatigue.
Love to all~
Translation:It is below 60 outside and we are a family of wimps.
Alannah is spending the night at a friends house.
Translation: Please momma can I go stay up all night and laugh and giggle and come home and be insufferable tomorrow because I am so tired.
So, because of the aforementioned cold, Mandy and Zachary asked me to start a fire in the fireplace.
Transalation: Go to garage haul in faux wood Duraflame. Use long fancy lighter to set fire to the arrows and VOILA! I am woman! Hear me roar! I made fire!
OR....
NOT!
Tonight's version went something like this:
"Momma would you make a fire? It's cold."
"Sure! Maybe we can even roast marshmallows!"
Go to garage.
Get faux wood.
Get long fancy lighter.
Open glass doors on fireplace.
Wonder aloud if that thingamigig is supposed to be forward or backward. Decide forward looks good. Because why on earth would anyone have moved it from the last time we had a fire? That would just be stupid.
Chuck Duraflame onto little brick Duraflame-holder-upper-things.
Light arrows on paper. Careful to follow "Light here" arrows precisely.
Ahhh, fire. I made fire. I made happy kids. All is good. I am good mommy. We are Norman Rockwell painting. Sigh a deep sigh of accomplishment.
Except, I made smoke.....lots and lots of smoke.
I made every smoke alarm in my house go off.
I made Mandy cry in agony, "Mommy, make the noise stop."
I made my dogs bark. And the neighbors dogs bark. Probably made a cow moo somewhere.
I made Zachary note, "It doesn't usually do that momma."
I open every door in my house.
Now it's cold.
And loud.
And smokey.
I am now cursing Duraflame for robbing us of our Norman Rockwell moment.
Turns out? The little thingamigig? The one that would have been stupid for someone to move from the last time we had a fire? Yea. Someone? Was stupid.
Forward?
Wrong answer.
Push thingamigig back, with my bare hand. Burn hand on thingamigig, cause where there is smoke...there is fire. And fire? IS HOT! And makes surrounding metal hot. DUH! Cuss under my breath at thingamigig. Maybe I was stupid person who moved thingamigig in the first place. HATE thingamigig. Thingamigig is evil. Wish very bad mojo on thingamigig and all it's little thingamigig friends and family.
Have cleared out smoke now. Temperature in house is -20. Mandy needs therapy. Zachary is craving smoked ham. Dogs hiding in bedroom. I am terrible mommy. Even worse fire maker.
Finally I conquer thingamigig and we have Norman Rockwell moment. Mandy and Zachary snuggly reading by roaring fire. We are all too traumatized for marshmallows now.
Oh, and? Zachary and Mandy both made honor roll! They also both got to go to the reward Sock Hop for good citizenship! Yay them!! Soooo proud of them! Haven't gotten Alannah's report card yet.
Mandy is still really tired, but we are just going to try to lay low this weekend and see if that helps perk her up. She did well at school today, but wanted to lay down as soon as she got home. Not really sure what to do with the fatigue.
Love to all~
Thursday, January 15, 2009
Stuff
Chemo was good this week.
Wow. What a remarkably oxymoronic sentence that was.
Ok, let me rephrase. Chemo was uneventful this week. Good is a word reserved for all things cute and happy. Mandy's counts were good ANC 1110, Hemoglobin 10 and platelets 356. Mandy was her usual bouncy, crazy happy self. I swear that child teaches me everyday how to find joy in the most obscure places.
We talked with her neuro-oncologist about the most recent scans. Basically, she concurred with the report.
The gist:
Optic glioma= stable
Left Parietal Lobe lesion= unsure, but probably glioma. Wouldn't know for sure without biopsying and that ain't gonna happen.
Myelin Vacuolozation= is what it is
This was week 17 of a planned 52 week protocol. That could be extended if there is a lot of shrinkage, or if things were growing, or if the wind was blowing out of the east on the third Tuesday of the month.
She has been exceptionally exhausted the last two days. We got home from chemo and she slept from 2pm until 6:30pm. She was back in bed by 11pm and slept until 11:30 am. And then topped it all off with a nap from 2 until I woke her up at 5. This can't really be explained by her blood counts, because those were lovely. So, not really sure what that's about. She feels fine, when she's awake.
Mandy had a special date tonight. She went to a hockey game with a very special friend and had a blast! Mandy even got to make a appearance on the big tv! This, made her day, her week, her year!!! Thanks, Lisa for making her feel so special. You are truly made of awesome!
That's about it from here.
Love to all~
Wow. What a remarkably oxymoronic sentence that was.
Ok, let me rephrase. Chemo was uneventful this week. Good is a word reserved for all things cute and happy. Mandy's counts were good ANC 1110, Hemoglobin 10 and platelets 356. Mandy was her usual bouncy, crazy happy self. I swear that child teaches me everyday how to find joy in the most obscure places.
We talked with her neuro-oncologist about the most recent scans. Basically, she concurred with the report.
The gist:
Optic glioma= stable
Left Parietal Lobe lesion= unsure, but probably glioma. Wouldn't know for sure without biopsying and that ain't gonna happen.
Myelin Vacuolozation= is what it is
This was week 17 of a planned 52 week protocol. That could be extended if there is a lot of shrinkage, or if things were growing, or if the wind was blowing out of the east on the third Tuesday of the month.
She has been exceptionally exhausted the last two days. We got home from chemo and she slept from 2pm until 6:30pm. She was back in bed by 11pm and slept until 11:30 am. And then topped it all off with a nap from 2 until I woke her up at 5. This can't really be explained by her blood counts, because those were lovely. So, not really sure what that's about. She feels fine, when she's awake.
Mandy had a special date tonight. She went to a hockey game with a very special friend and had a blast! Mandy even got to make a appearance on the big tv! This, made her day, her week, her year!!! Thanks, Lisa for making her feel so special. You are truly made of awesome!
That's about it from here.
Love to all~
Tuesday, January 13, 2009
I'm sorry? What did you say?
Dear Makers of Rosetta Stone Language Software,
I seem to have a problem I was hoping you could help me with. I have three beautiful, smart children. I know they are smart because their teachers tell me so, and this assertion is backed up by test grades and report cards. So, I have to assume the shortcoming in our relationship comes from me.
Now, when I was in high school and college I had to take a foreign language. I opted for Latin, given my desire to someday get paid to argue (lawyer) or get paid to fix little kids boo-boos with a kiss and a smile and maybe write them a 'script (doctor). I followed through on neither career choice, by the way.
So, while it makes me feel all smart and stuff that I can conjugate words like abstineô and tell you the root meaning of cerebr, it has very little everyday usefulness.
This is not the first time my lack of language skills has gotten me in trouble. I have been known on more than one occasion to greatly offend some of my Spanish-speaking friends by asking what seemed to be a simple question. While I am certain I said, "May I please borrow your restroom?" in fact, what I actually said is something along the lines of, "My chicken pooped on your grandmother's toast."
Yeah. Me? Not so good with the other languages.
I thought I had English down pretty well, though. However, there seems to be an issue with my dialect. Or accent. Or enunciation. Or something.
As I mentioned above, my kids are smart. Really. So, when I say, "Please go brush your teeth" and they hear "Please go play your Nintendo DS," I have no choice but to believe it is some failure on my part.
Just this morning...
I said: "Please hurry. We are running late."
They heard: "Please try to set a world record for slowest walking human. EVER."
I said: "Get dressed."
They heard: "Why don't you sit on your floor, wrapped in a towel, after your shower, and catch up on some reading?"
I said: "I am going to go brush my teeth. Please have all your school stuff by the door, ready to go."
They heard: "Please, for Pete's sweet sake, take everything you own out of your back pack and dump it in a pile in the middle of the living room floor so that you can verify the existence of your very favorite pencil because if you don't have it there is simply no way you can do your schoolwork."
So, as you can see, there is obviously a language barrier issue here. Maybe it is merely a dialect issue? Maybe it is a whole other language that I can't possibly expect them to understand? Maybe I actually don't make any sound at all and they are just doing the best they can trying to understand my nonexistent subtitles?
Either way, I clearly need your help. It is not them. It is me. I know that and have taken the first step to solving my problem. However, I looked all through your website. I found Swahili, Mandarin and even Persian. And while those sound like interesting languages to learn, they are not exactly applicable to my particular situation. At least I don't think they are. Maybe that is my problem ... I am not even sure what language my children understand.
Rosetta Stone, we are a family in crisis. What kind of mother can I be, if we can't communicate effectively? I beg of you, please let me know exactly what software it is I need to purchase with three easy credit card payments of $39.95 plus shipping and handling? My family's health, well-being and tooth-brushing depends on you.
Thank you so much for your prompt attention to this matter. I look forward to hearing from you soon.
Love,
Natalie
I seem to have a problem I was hoping you could help me with. I have three beautiful, smart children. I know they are smart because their teachers tell me so, and this assertion is backed up by test grades and report cards. So, I have to assume the shortcoming in our relationship comes from me.
Now, when I was in high school and college I had to take a foreign language. I opted for Latin, given my desire to someday get paid to argue (lawyer) or get paid to fix little kids boo-boos with a kiss and a smile and maybe write them a 'script (doctor). I followed through on neither career choice, by the way.
So, while it makes me feel all smart and stuff that I can conjugate words like abstineô and tell you the root meaning of cerebr, it has very little everyday usefulness.
This is not the first time my lack of language skills has gotten me in trouble. I have been known on more than one occasion to greatly offend some of my Spanish-speaking friends by asking what seemed to be a simple question. While I am certain I said, "May I please borrow your restroom?" in fact, what I actually said is something along the lines of, "My chicken pooped on your grandmother's toast."
Yeah. Me? Not so good with the other languages.
I thought I had English down pretty well, though. However, there seems to be an issue with my dialect. Or accent. Or enunciation. Or something.
As I mentioned above, my kids are smart. Really. So, when I say, "Please go brush your teeth" and they hear "Please go play your Nintendo DS," I have no choice but to believe it is some failure on my part.
Just this morning...
I said: "Please hurry. We are running late."
They heard: "Please try to set a world record for slowest walking human. EVER."
I said: "Get dressed."
They heard: "Why don't you sit on your floor, wrapped in a towel, after your shower, and catch up on some reading?"
I said: "I am going to go brush my teeth. Please have all your school stuff by the door, ready to go."
They heard: "Please, for Pete's sweet sake, take everything you own out of your back pack and dump it in a pile in the middle of the living room floor so that you can verify the existence of your very favorite pencil because if you don't have it there is simply no way you can do your schoolwork."
So, as you can see, there is obviously a language barrier issue here. Maybe it is merely a dialect issue? Maybe it is a whole other language that I can't possibly expect them to understand? Maybe I actually don't make any sound at all and they are just doing the best they can trying to understand my nonexistent subtitles?
Either way, I clearly need your help. It is not them. It is me. I know that and have taken the first step to solving my problem. However, I looked all through your website. I found Swahili, Mandarin and even Persian. And while those sound like interesting languages to learn, they are not exactly applicable to my particular situation. At least I don't think they are. Maybe that is my problem ... I am not even sure what language my children understand.
Rosetta Stone, we are a family in crisis. What kind of mother can I be, if we can't communicate effectively? I beg of you, please let me know exactly what software it is I need to purchase with three easy credit card payments of $39.95 plus shipping and handling? My family's health, well-being and tooth-brushing depends on you.
Thank you so much for your prompt attention to this matter. I look forward to hearing from you soon.
Love,
Natalie
Thursday, January 8, 2009
Happy birthday to me
So, one of the coolest things about my birthday dinner tonight?
Save the fact that it was my eleventy baziollionth 29th birthday.
My Grandma made me dinner.
From Colorado.
I know! Cool, right?
When she was here visiting, she made a bunch of beef brisket(my FAVORITE!) Trust me, if you had my Grandma's brisket, it would be your fave too. In true Grandma fashion, she bagged it all up and put it in the freezer for me. So, despite the fact that she is in Colorado, my Grandma made me my birthday dinner tonight.
Seriously?
How cool is that?!
Ronnie baked me a cake that Alannah decorated.
Awwwwwwww.
Each of the kids gave me a little something that they picked out and wrapped themselves. AND a handmade card!
Serious awwwwwwwwwww.
Zachary told his teacher 73 thousand times that today was his Momma's birthday. I know this because she was sweet enough to email and tell me so. And when I asked him about it tonight he said, "Yup, I sure did. Cause I am so proud of my Momma."
Let the big chorus of "Awwwwwwwwwwww" ensue.
I even got to wear a pink lei at dinner because Mandy informed me it was a birthday necklace and I needed to wear it. Her counts were beautiful yesterday and chemo went uneventfully. How's that for a great gift?!
I was a big pile of loved on Mommy mush shedding those little happy mommy tears. What more could I ask for?
But wait! There's more ... if you order right now you also receive a great lunch with some of the best friends a girl could ever ask for and another of those lunches promised for tomorrow, this time with my "adopted big brother" and one of my BFF's.
So far?
*29* is going pretty darn good.
Thanks everybody for making me feel so special and so loved. Don't know what I ever did to deserve it, but I will spend the rest of forever trying to be even half as good of a person as you think I am. I am not worthy, but thank you for pretending I am.
Love to all~
Save the fact that it was my eleventy baziollionth 29th birthday.
My Grandma made me dinner.
From Colorado.
I know! Cool, right?
When she was here visiting, she made a bunch of beef brisket(my FAVORITE!) Trust me, if you had my Grandma's brisket, it would be your fave too. In true Grandma fashion, she bagged it all up and put it in the freezer for me. So, despite the fact that she is in Colorado, my Grandma made me my birthday dinner tonight.
Seriously?
How cool is that?!
Ronnie baked me a cake that Alannah decorated.
Awwwwwwww.
Each of the kids gave me a little something that they picked out and wrapped themselves. AND a handmade card!
Serious awwwwwwwwwww.
Zachary told his teacher 73 thousand times that today was his Momma's birthday. I know this because she was sweet enough to email and tell me so. And when I asked him about it tonight he said, "Yup, I sure did. Cause I am so proud of my Momma."
Let the big chorus of "Awwwwwwwwwwww" ensue.
I even got to wear a pink lei at dinner because Mandy informed me it was a birthday necklace and I needed to wear it. Her counts were beautiful yesterday and chemo went uneventfully. How's that for a great gift?!
I was a big pile of loved on Mommy mush shedding those little happy mommy tears. What more could I ask for?
But wait! There's more ... if you order right now you also receive a great lunch with some of the best friends a girl could ever ask for and another of those lunches promised for tomorrow, this time with my "adopted big brother" and one of my BFF's.
So far?
*29* is going pretty darn good.
Thanks everybody for making me feel so special and so loved. Don't know what I ever did to deserve it, but I will spend the rest of forever trying to be even half as good of a person as you think I am. I am not worthy, but thank you for pretending I am.
Love to all~
Monday, January 5, 2009
Why I love hockey
We have recently discovered that we are a family of hockey fans.
I know.
Who knew? Right?
Well, here's the thing. Hockey? It's cool, no pun intended.! It is an artful blend of grace, knock-down-drag-out fights, way cute hockey player guys and cute cheerleader girls....something for everyone!
I have grown to love hockey. We all have. Don't understand it. AT ALL. But, love to watch it. But, most of all what I love to watch at hockey games is this.
This girl? LOVES HER SOME HOCKEY! Love the players, wants to be a Lightning Girl cheerleader, loves the game, loves the spectacle of it all. LOVES, LOVES, LOVES IT! And I? Love to watch her having this much fun screaming her fool head off.
By the way, MRI results are here, in case you missed it.
Love to all~
I know.
Who knew? Right?
Well, here's the thing. Hockey? It's cool, no pun intended.! It is an artful blend of grace, knock-down-drag-out fights, way cute hockey player guys and cute cheerleader girls....something for everyone!
I have grown to love hockey. We all have. Don't understand it. AT ALL. But, love to watch it. But, most of all what I love to watch at hockey games is this.
This girl? LOVES HER SOME HOCKEY! Love the players, wants to be a Lightning Girl cheerleader, loves the game, loves the spectacle of it all. LOVES, LOVES, LOVES IT! And I? Love to watch her having this much fun screaming her fool head off.
By the way, MRI results are here, in case you missed it.
Love to all~
May I have the envelope, please
After much stress and more than one sleepless night on my part, we did get the results today of Mandy's MRI.
For the medical geeks out there, the official report reads
Impression:
Stable abnormal MRI and MR orbits as compared with prior study without new abnormality as identified below.
Findings:
Multiplanar MRI of the brain and orbits was performed prior to and following the administration of intravenous contrast material, read in correlation with the prior MRI dating back to 11/05/08.
As compared with the prior study, there has been no significant interval change.
Left parietal lesion is unchanged with extensive myelin vacuolization again identified medial basal ganglia bilaterally, faintly within the thalami bilaterally as well as within the brain stem including the mid brain and pons extending into the medulla and cerebellar white matter.
There is once again prominence of the optic nerves bilaterally consistent with optic glioma involving the intraorbital segments in this patient with history of neurofibromatosis with mild ectasia of the optic nerve sheathes again noted.
No new orbital or intercranial abnormality is otherwise presently seen.
For the lay folks out there
The scan is essentially unchanged.
Myelin vacuolization is a common anomaly seen in NF patients. It basically means there are holes in the sheath surrounding the nerves and is for the most part inconsequential. There are some studies that think it could be something more significant, but they are far from proven.
We still wish we knew what the area in the left parietal lobe was. I will talk to her neuro-oncologist next appointment, but I would assume we are still just assuming it is another low grade glioma and are treating it with the chemo she is already on. That was the assumption last time, I would expect that to remain unchanged.
Optic Glioma is unchanged from last scan, but remember, from the first scan to the November scan(almost 9 months of treatment) we saw a 10% reduction, so the process is very slow.
So, all in all, a stable scan and no new monsters. So, that's good. Chemo keeps trudging on.
Thank you all for your thoughts and prayers!
Love to all~
For the medical geeks out there, the official report reads
Impression:
Stable abnormal MRI and MR orbits as compared with prior study without new abnormality as identified below.
Findings:
Multiplanar MRI of the brain and orbits was performed prior to and following the administration of intravenous contrast material, read in correlation with the prior MRI dating back to 11/05/08.
As compared with the prior study, there has been no significant interval change.
Left parietal lesion is unchanged with extensive myelin vacuolization again identified medial basal ganglia bilaterally, faintly within the thalami bilaterally as well as within the brain stem including the mid brain and pons extending into the medulla and cerebellar white matter.
There is once again prominence of the optic nerves bilaterally consistent with optic glioma involving the intraorbital segments in this patient with history of neurofibromatosis with mild ectasia of the optic nerve sheathes again noted.
No new orbital or intercranial abnormality is otherwise presently seen.
For the lay folks out there
The scan is essentially unchanged.
Myelin vacuolization is a common anomaly seen in NF patients. It basically means there are holes in the sheath surrounding the nerves and is for the most part inconsequential. There are some studies that think it could be something more significant, but they are far from proven.
We still wish we knew what the area in the left parietal lobe was. I will talk to her neuro-oncologist next appointment, but I would assume we are still just assuming it is another low grade glioma and are treating it with the chemo she is already on. That was the assumption last time, I would expect that to remain unchanged.
Optic Glioma is unchanged from last scan, but remember, from the first scan to the November scan(almost 9 months of treatment) we saw a 10% reduction, so the process is very slow.
So, all in all, a stable scan and no new monsters. So, that's good. Chemo keeps trudging on.
Thank you all for your thoughts and prayers!
Love to all~
Friday, January 2, 2009
True Confessions...
Ok, a few things you should know...
1) I will likely never be on time. For anything. Ever.
2) I am opinionated. Though I will never be on time, I will always have an opinion about whatever it was that caused me to be late.
3) I have an addiction. And though the first step to solving a problem is admitting you have one, I have no intention to even try to fix my addiction. Suffice it to say, if I could just mainline my Starbucks Mochas, I would. A bad day for me can be measured in mochas. A one-mocha day is just any given Tuesday. A two-mocha day ... that's a rough day. A three-mocha day, well, the apocalypse is nigh, my friends. The Emergency Broadcast System will be activated. Consider grabbing your loved ones, a can of pork and beans and the Bible and heading for the cellar.
and 4) I have no patience. At all. Now, I can be incredibly patient with kids, and animals. But, waiting for anything that isn't, well, sweet and cute ... not so much my strong point.
All of this leads to Mandy's MRI today. All went well with the scan. And now? Well, it's Friday. This means that we will be waiting through the weekend for results. Possibly until Tuesday and be still my heart, even, Wednesday.
That? Right there? Is something I am not patient with. At all.
I came home with a disk of the scans and popped it in my computer and used that medical degree I bought for $19.95 off of a matchbox that came in a plain brown wrapper. To do what? Well, nothing, really. Do I think I know what I see? Sometimes. Do I actually know what I see? Well, probably not. Because, contrary to what I like to delude myself into believing, I am not actually a doctor.
So, all of this to say, Mandy is happy, feeling fine and recovering beautifully from her anesthesia, which is always scary due to her malignant hyperthermia. Thankfully, she doesn't give a rat's behind when the results come back. So, that's good.
Me? On the other hand? Well, let's just say, Starbucks might be a good investment this weekend.
Love to all~
1) I will likely never be on time. For anything. Ever.
2) I am opinionated. Though I will never be on time, I will always have an opinion about whatever it was that caused me to be late.
3) I have an addiction. And though the first step to solving a problem is admitting you have one, I have no intention to even try to fix my addiction. Suffice it to say, if I could just mainline my Starbucks Mochas, I would. A bad day for me can be measured in mochas. A one-mocha day is just any given Tuesday. A two-mocha day ... that's a rough day. A three-mocha day, well, the apocalypse is nigh, my friends. The Emergency Broadcast System will be activated. Consider grabbing your loved ones, a can of pork and beans and the Bible and heading for the cellar.
and 4) I have no patience. At all. Now, I can be incredibly patient with kids, and animals. But, waiting for anything that isn't, well, sweet and cute ... not so much my strong point.
All of this leads to Mandy's MRI today. All went well with the scan. And now? Well, it's Friday. This means that we will be waiting through the weekend for results. Possibly until Tuesday and be still my heart, even, Wednesday.
That? Right there? Is something I am not patient with. At all.
I came home with a disk of the scans and popped it in my computer and used that medical degree I bought for $19.95 off of a matchbox that came in a plain brown wrapper. To do what? Well, nothing, really. Do I think I know what I see? Sometimes. Do I actually know what I see? Well, probably not. Because, contrary to what I like to delude myself into believing, I am not actually a doctor.
So, all of this to say, Mandy is happy, feeling fine and recovering beautifully from her anesthesia, which is always scary due to her malignant hyperthermia. Thankfully, she doesn't give a rat's behind when the results come back. So, that's good.
Me? On the other hand? Well, let's just say, Starbucks might be a good investment this weekend.
Love to all~
Subscribe to:
Posts (Atom)
