Stuff

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

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

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

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

Love to all~

Sugar high

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

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

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



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

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




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



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

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



Aliens gotta eat too.


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


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



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



had some face painting,



rode a train,



and met some animals from Lowry Park Zoo.



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





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

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



Love to all~

HAPPY 8TH BIRTHDAY, MANDY

And really? Right now? Today? Nothing else matters!! Happy birthday, baby. I love you more than the sun, the moon, the stars and the whole wide universe!



More later, I promise!

Love to all~

Pre-birthday birthday

Mandy's bloodcounts were great today! So she bellied up to the bar for her weekly Vinblastine. She had a blast at chemo. How's that for a bizarre sentence? But, this is why we love our nurses, our child life specialists and our clinic! 'Cause frankly, if you can manage to make chemo fun for children, well, frankly, that should qualify you for sainthood in my book.

They sang happy birthday at the top of their lungs. They all had a card for Mandy's birthday tomorrow, signed by everyone and they gave her a Hannah Montana Barbie for a birthday present. Really? How much do these people all rock? There is a special place in heaven for each and every one of them.

Nurse Louise, Nurse Lisa, social worker Monique and child life specialist Michelle singing happy birthday to Mandy!



Opening her Hannah Montana doll! Wooohooo!!!!!!!!!


One of Mandy's super favorite nurses, Miss Emily





She even got lucky enough that Miss Kyleen and Miss Jamie from the Children's Cancer Center just happened to be at clinic too! What a great birthday surprise!!!



These people are not just Mandy's nurses, social workers and child life specialists. They are not just a great medical staff. They are all have those things, but they are so much more. They have become friends. They love Mandy. They put up with me and my neurosis. We adore them. We are so lucky to have them guide us through this journey. Thanks for making Mandy feel so special today!

Love to all~

Boogie man, and not in a funky, cool dance fever sort of way

There is a Nerf Bazooka gun that lives in my house. It is the closest thing to a weapon that we own. Well, that and three dogs. A standard poodle and two Golden Retrievers. I may have to start sleeping with the bazooka under my pillow and buy spiked collars for the dogs so they can at least pretend to be ferocious.

I took the trash out tonight, cause Ronnie is out of town. And Zachary was sick. And Alannah was at youth orchestra. And Mandy is too small to handle the trash bag that really should've been emptied BEFORE I shoved the milk carton, cereal box and mismatched socks in it. So, I took out the trash.

There was a police car in front of my house. Odd. He backs up, rolls down the windows and waves me over to the car. Odder still. Asks for the house number across the street. I tell him.

Turns out there was a robbery over there on Saturday nightish. That particular house is vacant thankfully. Which is good. However, my house is most definitely occupied.

I would not be so incredibly freaked out by this if not for the fact that my backyard gate was opened. Sometime Saturday night. It was not opened by anyone who lives here. This leaves me with the only viable option of scary gate opener being the boogie man.

THIS.FREAKS.ME.OUT.

So, now I am sleeping with a Nerf gun under my pillow and dressing up my two Golden Retrievers and one Poodle as rabid Pitbull's for Halloween. I also positioned scary bouncer dudes around the house. AND posted a largish sign in the front yard that reads, "You mess with my kids, my house, my dogs or me and I will TAKE.YOU.OUT."

Well, that or... I put big fancy new locks on the gates. And am leaving all the exterior lights on at night.

I am sure it was just punk kids being idiots, but still. They were in my yard. I am not okay with this.

Zachary's stomach bug left as quickly as it came and he is doing fine this evening.

Off to chemo tomorrow for Mandy, armed with cookies for the nurses so they can help her celebrate her impending birthday. She is looking pretty pale, so I am hoping her blood counts won't be an issue.

Love to all~

Pitiful

Zachary has a stomach bug. He is miserable. Did I mention he was miserable? He does. Frequently. He does not feel good. He would like to make sure everybody knows. SIGH. My boy child? He is super smart and cute and sweet and charming and funny as all get out. He is also a whiner of epic proportions when he is sick. I feel bad for him. I do. Poor guy really doesn't feel good. Really. But, geez, I whined less delivering a child.

So, because I am all about sharing the joy, a few of his better moments of not feeling good.

First, because he is a sweet boy and I love him, I will share a moment of true love. He really knows how to charm a girl when he says, "It is so much better to puke when you are beside me."

Awwwwwwwwwwwww. He is so sweet. I can see him wooing some sorority sister a mere 10 years from now with this line after a raucous frat party. He's awful cute, people. I could see the line working on just the right sorority girl.

And my favorite, pitiful sick boy moment. I left him briefly to go take a shower. I made sure he was tucked in, had access to his water and the remote and had my favorite feather pillow tucked nicely under his head. I come back and he is laying on the couch watching "Go, Diego, Go." Cute show...animated cousin of Dora the Explorer, cute little animated animals, exciting animated animal adventures. It is cute. It is aimed at the under 5 crowd. He's 9 1/2.

I look at him and say, "Dude. Go Diego Go? Really? You reliving the good old days or what? Why didn't you change the channel?"

Sad, pitiful boy child looks at me and says, "I couldn't reach the remote."

It was on the coffee table. In front of the couch. On which he was laying. No more than a 8" reach away.

Ahhhhhh, my boy is now a man.

Love to all~

The kindness of strangers and not-so-strangers

In case you hadn't heard Mandy talking about it lately (which could only mean you haven't actually talked to her, cause if you had, she would have told you) her birthday is next Thursday. She will be 8. She thinks this is some seriously cool news, people!

She got her first card and present in the mail today. The thing that made me tear up about this, it was from someone we didn't even know. She got a very sweet birthday card, a package of stickers and a $10 gift card to Target. She was absolutely thrilled!

Mandy has two chemo angels who truly watch over her and send her happy mail. She so looks forward to her goodies from Angel Toni and Angel Vicky. I have never met these two wonderful ladies who bring so much joy to my daughter. They mean the world to me. Though by strict definitions they are strangers -- we have never met, never shaken hands, never hugged -- they hold a piece of my heart forever.

Today's gifts came from another angel, a bonus birthday angel. Mandy was thrilled to get birthday happies in the mail. My heart was touched. The same day, she was excited to get some new-to-her clothes from a wonderful friend. Mandy loves new clothes almost as much as she loves mail. So, all in all, today was a great day to be Mandy.

I truly believe, in every journey, no matter what that journey is or how terrible it might be, there are blessings, if you are willing to look for them. Sometimes, you have to look harder than others, but they are always there. One of the blessings of this journey is being able to see the goodness in so many people. Our friends have stepped up in a way that I never could have imagined. We still have dinner brought to us every Wednesday after Mandy has chemo. It's been almost eight months and still, like clockwork, every Wednesday, dinner shows up, delivered by a loving, smiling, supportive friend. More friends than I can count have offered love, support, an ear to listen or a shoulder to cry on.

I have prayed every day since her diagnosis. There have been numerous times when praying has been incredibly difficult for me. There have been numerous times that I have been very angry at God, and my prayers were one word, WHY? There have been numerous times that I have been grateful and thankful. There have been times when the prayer was pretty basic: "Please fix it." I couldn't itemize. I couldn't be specific.

And no, these prayers have not always been answered in the way I hoped they would be. The best example of this was when neuropathy set in. Mandy was struggling to walk very far without pain. I prayed that night for her to not be in pain. The next day, I mentioned the neuropathy to a friend I met through the Children's Cancer Center. Within hours I had offers of not one, not two, but three jogging strollers. Was this the way I wanted her to be able to get around without pain? No, it wasn't my first choice. But was it an answered prayer? You bet it was.

Seven and a half months ago, I prayed for her health. I prayed for strength for all of us. I prayed for the strength to be what I needed to be for her. I prayed for comfort and peace. Those prayers have been answered over and over again in the form of friends and family and strangers reaching out to her. To all of us. For each and every one of them, we are thankful and incredibly blessed.

Love to all~

Color me surprised

At least I wasn't the only one who thought it was laughable to think Mandy would make counts and actually get her chemo today. Oh no. I was in good company. But, Mandy is allllll about the unusual presentation thing and sometimes that plays in our favor. Today was one of those days.

Bloodwork was all good. Who'da thunk it? Her ANC was 1150, platelets and everything else good too. So, no held chemo this week! Thank goodness.

Her homebound teacher came for a while this afternoon. Mandy had a good time with her. She slept for about 4 hours and was back in bed and asleep by 8:30. Again, this week she had a one nasty bout of diarrhea and nausea. But, she was in good spirits.

Sorry to be brief, but I am tired and headed to bed.

Love to all~

Wednesday. Like Friday, only sooner

There has been a slight revision to the slightly revised previous plan. Mandy's chemo remains count sensitive, but the new magic ANC number is 750, instead of 1000. And the go in on Friday and hope to make counts to get chemo plan has been revised to go in tomorrow, hope to make counts and get chemo. Pay attention, y'all. There will be a quiz later.

In other news, Ronnie and I went on a date to celebrate our anniversary on Saturday night. We went to the Columbia, one of my very favorite places in the world! We ordered Sangria while we waited for our table. We drank our Sangria while watching a couple of blonde teenage girls in homecoming attire try to take their fight over some cocky looking brunette, surfer haired boy outside. Ahhhhhh, young love.

Our table was ready, we ordered salad and our entrees. They have THE.BEST.SALAD.IN.THE.WORLD. I'm telling you, I would crush it into a powder and snort it if I could. I am happily munching away on my salad. We are talking about God knows what...just having fun together.

And then

IT HAPPENS.

The lights go out.

I am not talking in some figurative sense. I am not talking about the fighting, scantily clad, blonde girls punching each others lights out. Nope, folks, there was no power.

There is a collective gasp from the crowd, that always follows a power outage. Something about the lights going out unexpectedly that makes us all kindergartners again and do the big GASP, sometimes followed by a few six-year-old-esque screams.

Me? I look at my husband. Well, okay, I look in the dark to my right, where I believe he was a minute ago, cause I can't see jack squat now, sigh deeply and say, "REALLY? Are you freaking kidding me? AGAIN WITH THE LIGHTS?"

Not unlike our fellow restaurant goers, we revert to kindergarten as well, but in fits of laughter. Hysterical, donkey snorting, Sangria out the nose (which kinda burns, by the way), mascara running down my face laughter.

Why?

Well, 'cause last year? On our anniversary? We went to a really swanky Italian joint. Ordered a bottle of wine and some lobster bisque. And, two bites in, I kid you not, the power went out. Never to return. We left after finishing off the bottle of wine and some tepid bisque and got Chinese.

This time at least we got tepid entrees. And a complimentary flan.

I hate flan. I would have been more excited if they had just brought me another salad for dessert. Or more Sangria. Love the salad. Totally LOVE the Sangria. Hate the flan.


Love to all~

The Dow is up, the ANC is down

Mandy looked like she had been hit by a truck this weekend. She was exhausted and very pale. I really thought her hemoglobin was low. I ran her in this morning for a finger stick, just to make sure all was okay. Everything else was fine, platelets, hemoglobin, etc, but her ANC was down from 950 on Wednesday to 530 today. So much to her chagrin, she is home from school until her counts rebound and she has a decent immunity again. She is, shall we say, slightly more than slightly displeased at this turn of events.

Her usual chemo appointment for Wednesday has been postponed. The chances of her counts rebounding enough to make counts for chemo by Wednesday are minuscule. So, the plan is to go back in on Friday and see if her counts are better and hopefully she will have rallied and be able to return to her regularly scheduled chemo. In the meantime, we will try to keep her entertained at home.

Love to all~

Funky Wednesday

One more chemo is done, but barely. Her chemo is count sensitive. By the strict letter of the protocol, they are supposed to hold chemo if her ANC is less than 1000. Today's ANC was 950. However, they opted to go ahead and administer it today. I was a little surprised by that, but, am glad that we didn't have to hold chemo. We anticipate that number may drop significantly after hitting her with more chemo today. So, for this week, we will have to be aware of precautions for lower counts this week, but not panic about it.

She was very tired this afternoon and slept about 3 hours. She had a nasty bout of diarrhea and some nausea tonight. She was low key, but, she was in good spirits and happy.

I did talk to the neuro-oncologist today. She felt like the area in the left parietal lobe is probably another low grade glioma, mainly because it enhances on the MRI. We will watch it closely. If in fact it is another glioma, hopefully, it will respond to the chemo already being administered. If not, that area is surgically accessible, with "a little digging."

I so long for firm answers. That is unattainable. The very nature of NF and of the tumors that it brings with it, is that it is an uncertain road map. I really respect the medical team we have and know they have all the answers that there are to have. I just wish there were more answers to be had.

On the upside, right now, she is doing well. And one thing this journey has taught me is that anything beyond right now is merely guess work. So, we will be grateful for and happy in our right now and do our best to leave the rest alone for now.

Love to all~

Our marriage is now legal to vote

It was raining. I was not pleased. And by not pleased, I mean completely losing my flipping mind, because it was not supposed to be raining on my wedding day. It is possible I was a little nervous.

The flowers were supposed to be blue cornflowers with white carnations. They were purple. I was not pleased. And by not pleased I mean losing my mind with the thought that my really pretty royal blue bridesmaids dresses(meaning terribly ugly electric blue. And, by the way, I am sure am sorry to my four bridesmaids for making them wear that. Cause really? You sooooooo could not cut it off and wear it again. EVER. You could cut it up and use it for tourniquets on the battlefield, maybe. But, that's about as close as you could get)would clash with the purple flowers. It's possible I was a tiny bit nervous.

Ok, I admit it, I was nervous. And by nervous, I mean I was scared to death. But there was this moment. This one moment. I remember it with such clarity. It wasn't that moment when I first saw him that day. It wasn't the moment he smiled at me when I was hesitation stepping down the aisle. It was the moment that my hand was laid in his. I stared at that simple image for a moment. My hand in his. I looked at it for a long moment before I looked up and looked at him. It washed over me like a cool breeze on a fall afternoon. And suddenly? It was all right. All of it. The rain was perfect. The flowers were perfect. In that moment, it was all perfect.

Eighteen years. It has been eighteen years since that day. We were only kids. I was 19. He was 21. We talked about waiting, but decided... really? Wait for what? We knew it was right. We have been through more than our fair share of good times. We have also been through more than our fair share of crap. We have had rough patches. We have been mad. We have cried. We have laughed. We have rejoiced. But through it all, we have been just that, WE. It hasn't been easy. At times, it has been incredibly hard. But, we never gave up, even though there were times one or both of us wanted to. Together, we molded what we both wanted more than anything, a family.

We have gone from two kids engaged,



to a married family of two,



to a solid family of five, able to love and laugh and cry together through all the good times and the bad.



Ronnie, you are my friend and husband, the father of my children, the one who can always make me laugh, the one who lets me steal all the pillows, the one who lets me act like a fool, the one who laughs at all my stupid jokes, the one who loves me unconditionally and lets me love him back. Thank you. Thank you for continuing to put up with me. Happy anniversary!

Love to all~

Camping, as it should be.

I love Nature. I love the outdoors. I love it, if it stays with its own and I stay with my own. If I can look at it from a bug-free, reptile-free, air-conditioned space, we get along just fine. I just don't so much like nature or the outdoors if it gets on me. And I have to wash it off. Yeah, really? I am not so much of the camping type girl. I prefer camping with comfortable beds, running water, maybe even a nicely scented body wash, thankyouverymuch.

This weekend we went camping with a bunch of other families from the Children's Cancer Center. The event is called FLIGHT Camp. (The acronym stands for "Fun and Laughter In Groups Hoping Together".) It was beautiful and amazing and wonderful. And this? THIS is TOTALLY the way I like to camp.

I am alllllll about this as my tent,



this as my grub cooked in the great outdoors,



and this as my sunset view, on my deck that is located off my very cute room, with the very comfy bed and air conditioning.



We all had an amazing time. I have said 1.3 million times how much we love the ladies who give so much to all the families that go to the Center. They truly give 110 percent to make everything wonderful for the kids and parents and hit it out of the park every single time. This was no exception!

There were plenty of activities to keep everyone entertained. Ice cream social, arts and crafts, a hoe down and just lots of great company with all the other families that we have come to love and adore. This is not an easy road by any means, but having other families who really "get it." Well, it just means more than I could ever express.

Thank you to everyone at the Center! It was an amazing weekend!

This is the "Booty Shaking Club." There are currently about 8 members ranging from 4-10 years old. I am proud to say my daughter, Bella, and Rachael were some of the founding members of this newly minted club. Color me proud.



Zachary and Nathaniel going on a gator hunt. Is it just me or does Zachary look totally ready to push Nathaniel off that rock and into the mouth of whatever gator comes along while he runs screaming like a little girl in the other direction? Just asking.



And, this picture, I just love. I took this walking back toward the kids dorms on Saturday. I called those "Jesus rays" when I was a little girl. I believed with all my heart, and still do, that it was God sending his love directly down via those sun beams. I just thought it was so telling about the weekend. The dark cloud is there, but the beauty and hope, love and joy is what you notice and what you feel when you look at this picture.



Love to all~

Patience is a virtue....we just don't have it in my house

As previously explained, my boy child, has a bit of an excessive amount of enthusiasm related to the upcoming Halloween and all the associated hoopla that goes with.

He actually is more excited about the decor than he is about the candy. You would think this gives me more access to his trick or treat goodies. Sadly, not so much...though I am known to sneak a Twix or 12. Oh, leave me alone! He doesn't like them anyway!!

I was on the phone yesterday when he got home from school trying to straighten out a hospital bill. I really need to get a new hobby....

ANYWAY....

He kept begging me, while I was on the phone to put up Halloween decorations RIGHT FREAKIN NOW!!!!!!!!!!!!! I, oh so patiently said, "Not right now, sweetheart. Mommy is on the phone," in my nice inside voice. OR I said, "Were you born in a barn???!!! Can you not see I am on the phone???!!! Have I not told you every single day for the last nine years to please wait until I am off the phone before you talk to me???!!!!" in my not-so-inside voice. You choose.

So, off disgruntled boy stomps to his room. He comes out later. He had stuff to do last night with Daddy, I had stuff to do with Mandy. We moved on.

Today, I was putting laundry away. Shocker again, I know. I went to my darling son, Zachary's room to find this on his door.



A close up so you can see the love and patience oozing from his every pore in this particular piece of artwork.



It is a bit hard to see, but it says, "KEEP OUT! Inless you say Time to put up Halloween decorations."

Ahhhhh, patience is indeed a virtue. I gotta get us some of that.

And, yes, we will be putting up Halloween decorations this weekend.

Love to all~

Oprah!!!!!

Hey ya'll....watch my dear friend Anissa on Oprah today!!!!!!!!!!!! Love ya, Anissa!! It is just the tip of the 15 minutes iceberg my friend!!