We are down to seven...one more chemo in the bag today and only 7 more to go. Counts were good and all went smoothly.
I am swimming in a sea of bipolar with the whole soon-to-be-off chemo thing. One part of me is absolutely thrilled. It has been a long year and a half. Her body needs a break. That's the sane and rational part.
Then, there's the insane and irrational part that is beside myself terrified to take away the security blanket that the chemo is. Crazy, huh? It's okay to say it. I have become one with my crazy. We don't want to keep letting that benevolent poison that chemo is, drip into her body once a week if she doesn't need it. But. What if she does?
The sane side of my brain... the happy, lollipop tree and cotton candy cloud side of me is just freaking giddy! No chemo means more time in school, which thrills her. It means the chance to get back to dance or gymnastics or cheerleading or whatever other girly pursuit she has interest in. It means an immune system in recovery. It means a return of her stamina, her color, her hair. It means a step towards a more normal childhood for all of my kids. It means so many things. It means a great reason to throw one damn big party!
But, then there's the dark side, the things-we-don't-talk-about side. When visiting THAT side... the crazy and irrational side of my head, it looks a little something like this. We have been giving chemo for so long, what if she comes off and whatever we have been subduing surges back to life and throws it's own big party and invites its friends and family? What if that thing in the left parietal lobe, that no one is really sure about, is in fact something formidable and has been waiting quietly for a chance to take hold?
How quickly will her counts and immune system recover? How long before she recovers? Will her neuropathy go away entirely? How accurate is that new research that shows frequent rapid growth post treatment with Vinblastine? What will her long term effects of chemo be? How long before she ends up back in chemo again? Will she end up back in chemo again? Why do birds sing so gay? Why do fools fall in love? What is the square root of 1683.94? Did I remember to turn off the curling iron this morning? What IS that funky smell in Zachary's closet?
Yea.
Welcome to my crazy.
Come on in, have a seat, make yourself at home. But, you will have to speak up so I can hear you over the voices in my head.
Again, I am asking to please send some extra love and prayers to the Damm family.
Love to all~
Wednesday, August 12, 2009
Friday, August 7, 2009
News...
So, when your Daddy is in the newspaper business and you decide you want to make a newspaper, no construction paper/marker combo will do. Nooooo, in our house when you decide you want to make a newspaper, Daddy (former award winning newspaper designer turned newspaper software geek) gets allllll They-are-following-in-my-footsteps giddy.
So, Daddy gets to "test" his work software on the most demanding customers around...an 8 year old girl and a 10 year old boy. This is software used by some major newspapers worldwide and now by the staff of Dogs Daily
There are real stories on there (make sure to enlarge it so you can read them) written by the reporters and photography by Zachary. Subscriptions are available and advertising inquiries are being accepted. :-)
(Larger versions of the stories below - click to enlarge):
In other news, I am headed to Texas for a few days tomorrow to help out at our friends, the Damms. Send up some extra prayers for them, please...they are amazingly good people.
Love to all~
So, Daddy gets to "test" his work software on the most demanding customers around...an 8 year old girl and a 10 year old boy. This is software used by some major newspapers worldwide and now by the staff of Dogs Daily
There are real stories on there (make sure to enlarge it so you can read them) written by the reporters and photography by Zachary. Subscriptions are available and advertising inquiries are being accepted. :-)
(Larger versions of the stories below - click to enlarge):
In other news, I am headed to Texas for a few days tomorrow to help out at our friends, the Damms. Send up some extra prayers for them, please...they are amazingly good people.
Love to all~
A music lesson
My house is never quiet. EVER. Even over the din of three dogs and three kids there is one constant. Music. There is always music coming from one direction or another. Often, from many directions simultaneously.
Alannah is crazy talented on her viola. She truly has a passion for it.
So much so that she just went to Strings Camp and came home after two weeks and said, "Ya know, I think I would like to go to a different camp next year. That one is too strict."
Me, all in my best reprimanding Mommy voice: "Honey, it is a fun camp but you are supposed to work. It is not all fun and games there."
Her: "No! No, What I mean is they would be all forcing us to go play football or swim or whatever when all I wanted to do was practice."
Me, now in my best smart voice: "Huh???"
Cause that's totally how I would have been. Uh-huh ... no recreation for me, no flirting with the boys, nope, I got work to do, by golly. Yup, I would be the one playing till my fingers bled in a room by myself ... or, ya know, NOT.
Zachary just got a guitar. Cause what that blonde-headed, surfer-boy-wanna-be, tan-swimmer-body, make-anybody-laugh-till-their-beverage-comes-out-their-noses, always-tell-the-girls-how-pretty-they-are, charmer needed was one more reason to make chicks dig him. *snort*
So, the boy got himself a red Fender Stratocaster and can already whip out a mean Georgia Satellites tune. Not exactly an appropriate tune, "Keep Your Hands To Yourself," but Daddy justified that as the first lesson because it was easy.
Pfft, a whole lot easier to teach that song than it is to give an answer to the boy when he asks about one line in it.
"So, Momma, what IS the story about free milk and a cow?"
My response? Again, in my best smart voice, "Huh??"
Mandy dabbles a little in piano, but her first musical love is listening to it and singing it. She needs an ipod with a screen of her own in the worst way. Girlfriend loves her some music videos and can listen, sing and watch for hours.
I wrote once before how her Neurofibromatosis was diagnosed because of a song. Rather an odd form of doctoring, if you ask me, but whatever.
One of her favorite songs used to be "Bad Day" by Daniel Powter. She loved that song before she started treatment. Then, it became a staple for chemo day. We needed an Asiago bagel from Panera with 8 butters (yes, 8), a Starbucks Triple, Venti, Nonfat, No Whip, Extra Hot Mocha for Momma, with a matching Tall ice water in a hot cup for Mandy and we needed to listen to that song at least twice en route to clinic.
If you try to play that song now, she gets very upset.
"I hate that song now. It reminds me of being sick."
So, Mr Powter, we need to talk. It's not you, it's me. But, we simply can not see each other anymore. EVER. I'm sure you can understand.
She has had many favorites, over the years... Kenny Chesney "When the Sun Goes Down" or Alan Jackson/Jimmy Buffet "5 O'Clock Somewhere" and anything by Carrie Underwood. They tend to ebb and flow like favorite songs do. (And yes, I realize my girl, tends to like her some beachy,drinking music. What can I say, her Momma once called her Grandma at the age of 8 or so and sang alllllll the words to "Margaritaville." Yea...apple, tree...one falls pretty close to the other.)
One though... one, has remained constant. It always gets a "Turn it up, please, Momma."
"It's a Great Day to be Alive" by Travis Tritt. Even as a wee little thing, she LOVED this song. Still does.
This song is an embodiment of her. She has taught me, oh so clearly, you make a choice. Every day. You make a choice, no matter what that day is or what it brings, the power to make it a great day is your choice. Gist of the song: No one said life was easy, but it is what you make of it and there is happiness everywhere if you are willing to see it.
What an incredible gift that outlook is. I am honored to watch these three little music lovers grow.
Treatments are down to 8 now! 75 weeks down, 8 to go. How about them apples? So guess what? We are going to have a party, in March, Spring Break-ish time. We are going luau theme because Mandy's first-choice wish trip was to go to Hawaii to learn how to hula dance. I nixed it though, because a) it was too far and would have been too much for her and b) I had visions of being mid-flight, needing a doctor RIGHTFREAKINGNOW and having only whales and the occasional giant squid as my available medical staff. No thank you. Someday,(when we win the lottery) we will get her to Hawaii for real, but in the meantime, it is grass skirts and coconut bras for everybody right here at home!
Think I can get Travis Tritt to come to the party and play his song for her? I doubt he has a bigger/cuter fan anywhere!
Love to all~
Alannah is crazy talented on her viola. She truly has a passion for it.
So much so that she just went to Strings Camp and came home after two weeks and said, "Ya know, I think I would like to go to a different camp next year. That one is too strict."
Me, all in my best reprimanding Mommy voice: "Honey, it is a fun camp but you are supposed to work. It is not all fun and games there."
Her: "No! No, What I mean is they would be all forcing us to go play football or swim or whatever when all I wanted to do was practice."
Me, now in my best smart voice: "Huh???"
Cause that's totally how I would have been. Uh-huh ... no recreation for me, no flirting with the boys, nope, I got work to do, by golly. Yup, I would be the one playing till my fingers bled in a room by myself ... or, ya know, NOT.
Zachary just got a guitar. Cause what that blonde-headed, surfer-boy-wanna-be, tan-swimmer-body, make-anybody-laugh-till-their-beverage-comes-out-their-noses, always-tell-the-girls-how-pretty-they-are, charmer needed was one more reason to make chicks dig him. *snort*
So, the boy got himself a red Fender Stratocaster and can already whip out a mean Georgia Satellites tune. Not exactly an appropriate tune, "Keep Your Hands To Yourself," but Daddy justified that as the first lesson because it was easy.
Pfft, a whole lot easier to teach that song than it is to give an answer to the boy when he asks about one line in it.
"So, Momma, what IS the story about free milk and a cow?"
My response? Again, in my best smart voice, "Huh??"
Mandy dabbles a little in piano, but her first musical love is listening to it and singing it. She needs an ipod with a screen of her own in the worst way. Girlfriend loves her some music videos and can listen, sing and watch for hours.
I wrote once before how her Neurofibromatosis was diagnosed because of a song. Rather an odd form of doctoring, if you ask me, but whatever.
One of her favorite songs used to be "Bad Day" by Daniel Powter. She loved that song before she started treatment. Then, it became a staple for chemo day. We needed an Asiago bagel from Panera with 8 butters (yes, 8), a Starbucks Triple, Venti, Nonfat, No Whip, Extra Hot Mocha for Momma, with a matching Tall ice water in a hot cup for Mandy and we needed to listen to that song at least twice en route to clinic.
If you try to play that song now, she gets very upset.
"I hate that song now. It reminds me of being sick."
So, Mr Powter, we need to talk. It's not you, it's me. But, we simply can not see each other anymore. EVER. I'm sure you can understand.
She has had many favorites, over the years... Kenny Chesney "When the Sun Goes Down" or Alan Jackson/Jimmy Buffet "5 O'Clock Somewhere" and anything by Carrie Underwood. They tend to ebb and flow like favorite songs do. (And yes, I realize my girl, tends to like her some beachy,drinking music. What can I say, her Momma once called her Grandma at the age of 8 or so and sang alllllll the words to "Margaritaville." Yea...apple, tree...one falls pretty close to the other.)
One though... one, has remained constant. It always gets a "Turn it up, please, Momma."
"It's a Great Day to be Alive" by Travis Tritt. Even as a wee little thing, she LOVED this song. Still does.
This song is an embodiment of her. She has taught me, oh so clearly, you make a choice. Every day. You make a choice, no matter what that day is or what it brings, the power to make it a great day is your choice. Gist of the song: No one said life was easy, but it is what you make of it and there is happiness everywhere if you are willing to see it.
What an incredible gift that outlook is. I am honored to watch these three little music lovers grow.
Treatments are down to 8 now! 75 weeks down, 8 to go. How about them apples? So guess what? We are going to have a party, in March, Spring Break-ish time. We are going luau theme because Mandy's first-choice wish trip was to go to Hawaii to learn how to hula dance. I nixed it though, because a) it was too far and would have been too much for her and b) I had visions of being mid-flight, needing a doctor RIGHTFREAKINGNOW and having only whales and the occasional giant squid as my available medical staff. No thank you. Someday,(when we win the lottery) we will get her to Hawaii for real, but in the meantime, it is grass skirts and coconut bras for everybody right here at home!
Think I can get Travis Tritt to come to the party and play his song for her? I doubt he has a bigger/cuter fan anywhere!
Love to all~
Tuesday, July 28, 2009
Time...
Time can be a funny thing. I got a phone call almost 18 months ago from Mandy's neurologist with results from her most recent MRI. I can't tell you exactly what was said, because my head started to spin shortly after he said hello. But, I do know words like "significant disease progression" and "chemotherapy" and "substantial growth" were used. A lot.
After numerous consultations, with numerous doctors, at numerous appointments, it was confirmed, unanimously and repeatedly, that chemo needed to start and would last for approximately 18 months.
Eighteen months.
Chemotherapy.
Chemotherapy for eighteen months.
Holy crap.
Eighteen months.
Well, it has almost come and gone, that eighteen months. It has wound up being somewhat longer than eighteen months, ultimately. Sometimes it feels like a lifetime ... I almost can't even really recall our lives B.C. (before chemo). The weekly clinic visits are our norm now.
It seems like forever ago that we didn't need to have a 1.3 pound medicine bag in the car, complete with narcotics, Emla cream, Glad Press-and-Seal and a thermometer.
It has been eons since I didn't obsess over her blood counts every week.
A lifetime since she went to school five days a week.
A year and a half ago everything changed. And most days, it seems even longer than that. Like it has just always been our life. It seemed like the point where chemo could safely come to an end would never get here.
And yet? Here it is. After this Wednesday, only 9 more weeks. 18+ months has been whittled down to a mere nine weeks. Funny how our perception of time has changed. There was a time when nine weeks would have sounded like long time. Now, ten more treatments, nine more weeks, well, that's just right around the corner.
Love to all~
After numerous consultations, with numerous doctors, at numerous appointments, it was confirmed, unanimously and repeatedly, that chemo needed to start and would last for approximately 18 months.
Eighteen months.
Chemotherapy.
Chemotherapy for eighteen months.
Holy crap.
Eighteen months.
Well, it has almost come and gone, that eighteen months. It has wound up being somewhat longer than eighteen months, ultimately. Sometimes it feels like a lifetime ... I almost can't even really recall our lives B.C. (before chemo). The weekly clinic visits are our norm now.
It seems like forever ago that we didn't need to have a 1.3 pound medicine bag in the car, complete with narcotics, Emla cream, Glad Press-and-Seal and a thermometer.
It has been eons since I didn't obsess over her blood counts every week.
A lifetime since she went to school five days a week.
A year and a half ago everything changed. And most days, it seems even longer than that. Like it has just always been our life. It seemed like the point where chemo could safely come to an end would never get here.
And yet? Here it is. After this Wednesday, only 9 more weeks. 18+ months has been whittled down to a mere nine weeks. Funny how our perception of time has changed. There was a time when nine weeks would have sounded like long time. Now, ten more treatments, nine more weeks, well, that's just right around the corner.
Love to all~
Monday, July 13, 2009
Where's Waldo?
We were all all over the map this last week.
Literally.
Alannah was finishing up week 2 at orchestra camp, 40 miles to the East of home. She had a great time and played an amazing concert that her Daddy got to go see, but I missed for reasons that will be revealed later. I saw the video and it was fantastic and she had a blast!
Zachary was rescued from a week of more girliness than he could possibly stand or should ever be subjected to by Anissa and family in Georgia, 400 miles to the North of home. Mercifully, I don't have pictures to back this up, but, I am told there were BB gun shots fired at a gross dead thing. Somehow, this is cool. But, I have boobs and therefore do not understand how or why shooting anything, with or without maggots, is cool. But, he had a blast and owes Anissa BIG for saving him from....
Mandy and I were up to our eyeballs in bedazzled, glittery, foofoo pageantry this week in St Pete, 40 miles south of home. The ridiculously sweet and absurdly gorgeous Miss Pinellas County, Brittany Wardell asked four girls from the Children's Cancer Center to be her Sunshine Princesses in the Miss Florida pageant. Now, anyone who knows me knows that I could not be further from the stereotypical pageant mom type than I am. My kids left the house today in a dirty t-shirt he picked up off his floor, unmatched socks since she couldn't find any that matched and with only one having brushed her teeth. Had you asked me if I ever thought I would find myself backstage at Miss Florida or any other pageant for that matter, the hysterical laughter that would have ensued would have caused me to fall unkempt head first into my huge pile of unwashed laundry and died from dirty sock aspiration, but... if you build a tiara, Mandy will come.
Through the generosity of several amazing groups and people the girls were treated to gorgeous princess dresses.
And a week of princessing, the likes of which they had never seen.
And our Miss Pinellas county, loved on her girls every chance she got and could not have been sweeter to them. Mandy, who takes a while to warm up to anyone, simply adored Brittany within 5 minutes of having met her. And Brittany? Girlfriend can rock a bikini, lemme tell ya. If I looked even 1/8 as good in a bikini as she does I would wear it to Target, church, to shovel snow(ya know, if we lived somewhere that had snow), the grocery store, PTA meetings and Starbucks. And? She was sweet. And smart. I know, right??? If she weren't so darn nice, I might have to hate her just a little.
It was some long days, but Mandy LOVED every second! And I? Managed to not punch any pageant moms, which I think showed saintlike restraint on my part.
Thank you to everyone who made these four super special girls feel like princesses! And Brittany came in second runner up! Mandy said at least 732.5 times, "I am just so proud of her!!"
I put nearly 2000 miles on my car in a week, delivering and retrieving my kids from the far reaches of the planet, but all my scattered kiddos are now back where they belong, at home!
And a huge event today...I made Mandy's end of treatment MRI appointment. Twenty months of chemo will come to an end on September 30. The tumors aren't gone, and likely never will be. And due to her Neurofibromatosis, there is a fair chance we will have to treat something again, somewhere down the line. We are explaining it to the kids as an indefinite break from chemo. I wish I could promise it will never happen again.
I can't.
But, the bell is about to ding on Round One and she will have won with a knock out.
Love to all~
Literally.
Alannah was finishing up week 2 at orchestra camp, 40 miles to the East of home. She had a great time and played an amazing concert that her Daddy got to go see, but I missed for reasons that will be revealed later. I saw the video and it was fantastic and she had a blast!
Zachary was rescued from a week of more girliness than he could possibly stand or should ever be subjected to by Anissa and family in Georgia, 400 miles to the North of home. Mercifully, I don't have pictures to back this up, but, I am told there were BB gun shots fired at a gross dead thing. Somehow, this is cool. But, I have boobs and therefore do not understand how or why shooting anything, with or without maggots, is cool. But, he had a blast and owes Anissa BIG for saving him from....
Mandy and I were up to our eyeballs in bedazzled, glittery, foofoo pageantry this week in St Pete, 40 miles south of home. The ridiculously sweet and absurdly gorgeous Miss Pinellas County, Brittany Wardell asked four girls from the Children's Cancer Center to be her Sunshine Princesses in the Miss Florida pageant. Now, anyone who knows me knows that I could not be further from the stereotypical pageant mom type than I am. My kids left the house today in a dirty t-shirt he picked up off his floor, unmatched socks since she couldn't find any that matched and with only one having brushed her teeth. Had you asked me if I ever thought I would find myself backstage at Miss Florida or any other pageant for that matter, the hysterical laughter that would have ensued would have caused me to fall unkempt head first into my huge pile of unwashed laundry and died from dirty sock aspiration, but... if you build a tiara, Mandy will come.
Through the generosity of several amazing groups and people the girls were treated to gorgeous princess dresses.
And a week of princessing, the likes of which they had never seen.
And our Miss Pinellas county, loved on her girls every chance she got and could not have been sweeter to them. Mandy, who takes a while to warm up to anyone, simply adored Brittany within 5 minutes of having met her. And Brittany? Girlfriend can rock a bikini, lemme tell ya. If I looked even 1/8 as good in a bikini as she does I would wear it to Target, church, to shovel snow(ya know, if we lived somewhere that had snow), the grocery store, PTA meetings and Starbucks. And? She was sweet. And smart. I know, right??? If she weren't so darn nice, I might have to hate her just a little.
It was some long days, but Mandy LOVED every second! And I? Managed to not punch any pageant moms, which I think showed saintlike restraint on my part.
Thank you to everyone who made these four super special girls feel like princesses! And Brittany came in second runner up! Mandy said at least 732.5 times, "I am just so proud of her!!"
I put nearly 2000 miles on my car in a week, delivering and retrieving my kids from the far reaches of the planet, but all my scattered kiddos are now back where they belong, at home!
And a huge event today...I made Mandy's end of treatment MRI appointment. Twenty months of chemo will come to an end on September 30. The tumors aren't gone, and likely never will be. And due to her Neurofibromatosis, there is a fair chance we will have to treat something again, somewhere down the line. We are explaining it to the kids as an indefinite break from chemo. I wish I could promise it will never happen again.
I can't.
But, the bell is about to ding on Round One and she will have won with a knock out.
Love to all~
Saturday, July 4, 2009
15 years ago....
Fifteen years ago, my dream came true. I became a momma. As Hallmark-y as it sounds, it was truly what I always wanted to be.
Fifteen years ago, right about now, I was "explaining" somewhat adamantly to a nurse that if she did not take me down to NICU soon to see my baby girl that I was going to walk my drugged behind down the hall, with said behind hanging out the back of my hospital gown for all the world to see. And given that I was, at that point, pretty medicated, the chances that I would fall in transit and sue and rename the hospital "Natalie's Exposed Hiney Memorial" were execeedingly high, she really needed to consider if she wanted to work in a hospital with that name on it.
She took me to NICU.
That moment, that day, when I looked at her through the glass, I made a million promises. Some I kept, some I tried to keep and failed and some, that involved ponies and castles and never letting her heart be broken ... well, some were just too grandiose to keep.
That said, you break her heart, and you will have to deal with me. I have already threatened to expose my hiney, fall and sue. You really wanna go up against me? I think not.
Alannah, thank you for showing me the ropes. Thank you for being such an amazing young woman. I wish I could take the credit for the beautiful person you are, inside and out, but I can't. You are a gift and a blessing and one I am certain I have never been worthy of. But, I promise to keep trying to be. And that's a promise that will go in the "KEPT" folder.
I love you. Happy 15th birthday!!!!
Love to all~
Fifteen years ago, right about now, I was "explaining" somewhat adamantly to a nurse that if she did not take me down to NICU soon to see my baby girl that I was going to walk my drugged behind down the hall, with said behind hanging out the back of my hospital gown for all the world to see. And given that I was, at that point, pretty medicated, the chances that I would fall in transit and sue and rename the hospital "Natalie's Exposed Hiney Memorial" were execeedingly high, she really needed to consider if she wanted to work in a hospital with that name on it.
She took me to NICU.
That moment, that day, when I looked at her through the glass, I made a million promises. Some I kept, some I tried to keep and failed and some, that involved ponies and castles and never letting her heart be broken ... well, some were just too grandiose to keep.
That said, you break her heart, and you will have to deal with me. I have already threatened to expose my hiney, fall and sue. You really wanna go up against me? I think not.
Alannah, thank you for showing me the ropes. Thank you for being such an amazing young woman. I wish I could take the credit for the beautiful person you are, inside and out, but I can't. You are a gift and a blessing and one I am certain I have never been worthy of. But, I promise to keep trying to be. And that's a promise that will go in the "KEPT" folder.
I love you. Happy 15th birthday!!!!
Love to all~
Wednesday, July 1, 2009
So much to say, so little words to say it
I have never been accused of being too quiet or of not having anything to say. That said, it has been quite some time of me not having much to say on here.
I'm sorry.
We have had a seemingly endless array of a variety stress lately, and to be honest, I can't seem to organize my thoughts enough to put together a coherent post.
So, for starters, kids ...
Alannah is away at orchestra camp for two weeks. She made 3rd chair out of 13 violas in an age group where she is the youngest. She had a killer early birthday party, of the boy/girl variety, which was more than enough to give me (more) grey hairs. She will be 15 in a matter of days and eligible for a learner's driving permit, which is more than enough to give me (even more) grey hairs!
Zachary is back to competitive swimming and loving it. He is in constant motion and always looking for something to do/somewhere to be/someone to make laugh.
Mandy is good. We will be extending chemo an additional 6 weeks past the original end date and barring any complications or growth should be looking at ending this treatment at the end of September. Hopefully it is a permanent end to treatment, but we know with her neurofibromatosis that it may very well just be a break.
Her last scan was last week and was stable in both the optic glioma and the left parietal lobe lesion. We had a very scary couple of moments when after her MRI she started to run a little bit of a fever. For Mandy, due to her Malignant Hyperthermia susceptibility, any kind of post anesthesia temperature is cause for great alarm. They held her for an extra hour or so and it passed and all was well.
We hired a company to re-roof our house. Their "work" allowed it to leak, causing several thousand dollars worth of damage to the inside of our home. The fourth occasion woke Mandy in the middle of the night, when it leaked directly onto her, as she slept in her bed.
Yeah.
They? Were relieved from further duty.
A second company came in and did the job with no leaks.
I am tired. And in need of a vacation. And quite possibly stressed out. And tired. Did I mention tired?
All of this has led to my head being the word version of that quote, "It's too crowded so no one goes there anymore." Which has led to me not being able to finish a post, though in my incredibly weak defense, I have started several.
That's the gist of it all, in a nutshell. I promise to try to do better about posting.
Love to all~
I'm sorry.
We have had a seemingly endless array of a variety stress lately, and to be honest, I can't seem to organize my thoughts enough to put together a coherent post.
So, for starters, kids ...
Alannah is away at orchestra camp for two weeks. She made 3rd chair out of 13 violas in an age group where she is the youngest. She had a killer early birthday party, of the boy/girl variety, which was more than enough to give me (more) grey hairs. She will be 15 in a matter of days and eligible for a learner's driving permit, which is more than enough to give me (even more) grey hairs!
Zachary is back to competitive swimming and loving it. He is in constant motion and always looking for something to do/somewhere to be/someone to make laugh.
Mandy is good. We will be extending chemo an additional 6 weeks past the original end date and barring any complications or growth should be looking at ending this treatment at the end of September. Hopefully it is a permanent end to treatment, but we know with her neurofibromatosis that it may very well just be a break.
Her last scan was last week and was stable in both the optic glioma and the left parietal lobe lesion. We had a very scary couple of moments when after her MRI she started to run a little bit of a fever. For Mandy, due to her Malignant Hyperthermia susceptibility, any kind of post anesthesia temperature is cause for great alarm. They held her for an extra hour or so and it passed and all was well.
We hired a company to re-roof our house. Their "work" allowed it to leak, causing several thousand dollars worth of damage to the inside of our home. The fourth occasion woke Mandy in the middle of the night, when it leaked directly onto her, as she slept in her bed.
Yeah.
They? Were relieved from further duty.
A second company came in and did the job with no leaks.
I am tired. And in need of a vacation. And quite possibly stressed out. And tired. Did I mention tired?
All of this has led to my head being the word version of that quote, "It's too crowded so no one goes there anymore." Which has led to me not being able to finish a post, though in my incredibly weak defense, I have started several.
That's the gist of it all, in a nutshell. I promise to try to do better about posting.
Love to all~
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