Saturday, August 30, 2008

Where? What? Who? Oh, yeah. Me

I am not right in the head.

I have looked for, but not found, my daughter's Nintendo DS next to the glasses in the kitchen cabinet. I once recently found one of Mandy's flip flops under my pillow. I recently left a package of frozen cheese ravioli in the car over night. I live in Florida. It wasn't frozen anymore and had to be trashed.

See? I am not right in the head.

So yesterday, Mandy is really tired and out of sorts opts for staying home from school. So, we take other kids to school and on the way home, we stop off for coffee and a bagel. I may not be right in the head, but, by golly, I know I need me some caffeine in the morning. And Mandy is still eating us out of house and home, THANKFULLY. Girlfriend wanted a bagel or seven.

Thankfully, due to really good city planning on the part of zoning committees, or whoever makes such decisions, there is a Panera/Starbucks combo within spitting distance of my house.

So we're in line at Starbucks and we run into my friend, Lori. We know Lori from the Children's Cancer Center. Her ridiculously cute little boy has neuroblastoma.

Lori, "Hey, guys! Good morning!" Oddly, not seeming surprised to see us.

Me, "Heeeeeeeeeyy!" Very surprised to see her.

Small chat for a second about this, that and the other thing.

Lori, "You are here for the meeting right?"

Me, head trying to envision my computer where my calendar lives and tells me where I am supposed to be and when. I got nothing, cause I had not yet had any caffeine. Sad, I know. So, I responded with what any self respecting flake would respond with, "Yeeeeeeessssssssssssss, I am. I am here for the meeting. 'Cause I knew there was a meeting. And, I knew it was here. And so, this morning, I came here. For the meeting. That I remembered. Yup, that's me. I am here for the meeting."

Oddly, Lori, didn't so much believe me. Go figure.

So, with me only half put together and Mandy in her jammies, we went to the meeting for the Pediatric Cancer Foundation Cure Kids Cancer Challenge walk that is coming up on Sept 13. It is a fabulous event and I did have the meeting on my calendar. It just slipped my slicker-than-frozen-snot mind.

Our family will be walking that day to help raise money for pediatric cancer research. This amazing organization has already funded a clinical trial and has two kids in it. They are looking for a cure and money is what they need to help find it. If you would like to sponsor our team, please click here. No amount is too big or too small and it is going to be changing kids lives.

So, we stuck around for the meeting (you remember, the meeting. The one I TOTALLY knew about) and then came home. Waiting for me at home was an email from Amanda from Pediatric Cancer Foundation.

"You left your box of coffee at Panera."

Well, of course I did.

I am not right in the head people. Just. Not. Right.

Wednesday, August 27, 2008

Some good, some bad

Good news or bad news? Whatcha want? I vote to go out on a high note. And since this is my sandbox I am going to give you the bad news first. Save the good news.

Today's chemo pretty much sucked. Well, actually, that is not entirely true. Can something suck that never really happened? Confused yet? Allow me to perpetuate your confusion with a bunch of medical jargon. In short, Mandy's allergic reaction to the Carboplatin, one of her chemo drugs, that we have been struggling with kicked our butts today. Hard. It was not a gentle toe to behind contact. It was a full on Karate Kid kick to the a$$.

In the last three weeks, the breakthrough reaction, even with the premedications of Benadryl and Hydrocortisone, have increased in severity and she has been able to tolerate less and less of the drug before needing to intervene.

Week 1- She got about 80% of her dose of Carboplatin before a mild, but certainly noticeable reaction. Concerning, but thought to be an anomaly. Joked about them giving us defective no sleep inducing Benadryl.

Week 2- She got about 50% of her dose before she broke out. Worse than Week 1, both in severity and in fear factor for what this might mean as far as continuing the protocol. Significantly less joking this time.

Week 3- Today sucked. Did I mention that already? I'm just sayin. It sucked. She looked like Angelina Jolie for a while today. While a selling point if you are me and would like to look like her, not so much if you are a little girl, who had big, red, swollen, over botoxed looking lips. This along with being covered in big, red, swollen everything else. She only got about 20% of her medication before this happened today. And, just for fun, it happened at warp speed. She went from 0 to 60 in a speed that would make most sports cars envious. It started with some slight redness around her port to covered in hives and swollen face in about 3 minutes.

In one minute it was just me nervously saying to the nurse, "Becky? It looks like she is starting to have a reaction again." The next three minutes or so saw the carboplatin being stopped, the hives spreading rapidly, lips and nose and ear swelling, a Doc being paged out of a procedure, another 20 mg of Bendryl going in, a pulse oximeter being put on her finger, 4 nurses, one doc and one PA primed and ready to go and standing by her chair and an oxygen tank being parked by her "just in case." Thankfully, we didn't need that last item.

The fabulous medical staff there got it under control quickly. We could not finish the chemo. It was too risky. The thing about an allergy to Carboplatin is this: it is more like an allergy to peanuts than it is to cats. It can cause full blown anaphylaxis. Not a safe or fun party trick.

So, next week, we will take one more swing at it. The pharmacist is ordering the same drug from a different manufacturer. This is on the off chance that she is allergic to an additive, rather than the drug itself. There is small hope of this, but it is worth a shot. If it begets the same reaction, we will have to go to second line treatment and leave this protocol altogether.

I can't begin to explain how scared I am to pump this drug into her again next week. I can't begin to explain how terrified I am at what the reaction next week could be. I can't begin to explain how much I don't want to switch protocols to a second line treatment. I can't begin to explain how much this whole thing just sucks.

So, there is the bad news.

The good news, thanks to the appetite stimulant, Mandy has gained a full kilogram! That's 2.2 pounds to all the Americans like me out there who don't have a clue about the metric system! :-) My metric conversion skills began when Mandy was diagnosed because oncology clinics measure in metrics. Plus, it makes me feel all smart and stuff to toss around those conversions like I actually know stuff. This from the woman who was ready to pull her hair out helping my fourth grader with his Sunshine math yesterday. Oh yea, baby, I got mad skillz in math.

It was a day that was much shorter than it should have been. No usual 9 hour chemo today. We were out of there a full 3 hours earlier than usual. Yet, it feels like it took for-freakin-ever. I am exhausted. I am worried. I am discouraged and I am going to go cat nap next to Mandy and monitor her for any other hives rearing up.

Love to all~

Thursday, August 21, 2008


Mandy ate. AND ATE. AND ATE. The docs started her on an appetite stimulant last week and holy cow has it ever kicked in. Thank goodness for that, because really, the whole supermodel waif look she had going so wasn't so much working for me. How many Kate Moss replicas does the world really need???

A post-chemo day normally consists of me begging ("Please, baby, will you eat some breakfast?") and pleading ("Honey, I will get you anything at all you want for lunch if you will just take a few bites. You name it and it is yours.") and bribing ("OK, really, I have $232 in cash on me right now. It's yours for just one teeny, tiny bite of food. Any food. I will even throw in a new Nintendo DS game"). Yeah, all this usually got me jack squat in the way of actual intake of actual food. Nothing. She has lost a substantial amount of weight. It, among about 3,426 other things, was keeping me up at night.

Fast forward to today. Today, post-chemo day. I wake up prepared with my usual lack of pride and willingness to do just about anything to get her to eat just about anything. She woke up slow, as always. She snuggled me for about an hour, as always. She looks up at me and says, "Can I have a cinnamon waffle for breakfast" as alwa--- huh? You are asking me for food? To eat? Really? I pinched myself, fully convinced it was a dream. OW! (I pinch hard, it seems.) So, about four pinch bruises later, I was convinced at least she thought she wanted it. Well, alrighty then. I made cinnamon waffles. She ate them. TWO of them. What the heck???

Then the unheard-of ... "Momma, can I have toad-in-the-hole?"

"Uhhhhhhhh, sure."

Now, for those of you thinking I am serving my kid reptiles. I am happy to report I am not. Well, okay, maybe once, but it was a bad a day and the guy said it was shrimp. I digress. Toad-in-the-hole is actually a piece of buttered toast with a hole cut in the middle in which you fry an egg. You cook it like a grilled cheese.

So,laughing at the folly of it all, I cook toad-in-the-hole, lamenting all along the sad little wannabe chicken who gave all to not be eaten. But Mandy ate it. Then she asked for another one. She ate it too. And drank two glasses of orange juice. Color me shocked.

She felt OK today. We went to the library and did some of the homework her teacher emailed me. Then lunch. She ate not one, not two, not three but four pieces of pizza.

Really? I think my kid has a tape worm. And, I just don't care!!! I was drunk with the sheer joy of seeing all she ate today. If you added up everything she has eaten in the last six months it would probably equal what she ate today.

I am so hoping we can kick the supermodel skinny look and go for the Queen Latifah look. Okay, a really short, pale, blonde Queen Latifah, but you get the picture. Healthy weight would be great.

And really? When you are this cute you could totally work the runway! Not that I am biased or anything. Thanks so much to the Children's Cancer Center and Thomas Bruce Studios for these Flashes of Hope pictures taken during Kite Camp!

I admit it. There is a slight possibility that I could, perhaps, maybe, be a tiny bit biased. Maybe. But, geez, they are cute!!!

Love to all~

Wednesday, August 20, 2008

One less thing to worry about

Hello. My name is Natalie. I am neurotic.
(Okay, all together now) Hello Natalie

Some of you know me well enough to know I can have a bit -- ok, a lot -- of neuroses. Maintaining my neuroses is a skill. I don't like to brag, lest all you wannabe neurotics out there feel bad. Keep working at it and someday you too, can be as crazy as me.

So, to say I had worries about Mandy and school this year is, well, a bit of an understatement. I was worried about the kids, I was worried about the teacher, I was worried about the Homebound program. Then today, I got this email:
Hi Mrs. Willis,

Mandy let me know that she would be out today because her chemo was moved up. I just wanted to let you know that we had a great first day! She has a wonderful sense of humor (only one that got all my jokes) and her work was great. She wrote more than anyone else about her summer and about how it feels to be in second grade!! I read over Mandy's IEP and it says that she is to receive individual academic instruction on the days she is not in school, however, I know the IEP is MIA. From reading your journal, it sounds like she feels pretty crummy the days she is home, but just let me know if you would like me to send extra work or anything else. I just thought I would attach our Quarter 1 project page since I sent it home today with our class. Of course, no pressure, but if she is feeling up to doing something, these are fun and involve crafts!

I spoke with Mrs. (Mandy's First Grade Teacher) and Mrs. (Zachary's teacher from last year, now lead teacher for the school), and don't you worry, I will hold high expectations for Mandy! I did let her eat a snack in the afternoon although I am not having a "snack time" in my classroom. Is that okay? Also, I want to be clear on how you would like me to discuss her situation with the rest of my students.
Lastly, I am in awe of you, your strength, and your positive attitude!

If I had said, "Ms. (Mandy's Teacher), this is what I would really love for you to say to me to appease my neuroses," the above is pretty much word-for-word what I would have written. So, how much do we love her???!!!

Chemo today was OK. We saw the neuro-oncologist again. We only see her once a month. I like her so much as a human being and have tremendous respect for her as a physician. It was such a hard decision to switch hospitals, but I am more convinced everytime we go to the new hospital that it was the right call. Mandy has become as comfortable as one could ever hope for and loves the nurses. And they so rock at putting up with my neuroses. They make my baby girl happy and they put up with me! Gotta love 'em!

Mandy had another breakthrough allergic reaction today. Some hives started rearing their ugly red heads. We got in front of it quickly and gave her a double dose of Benadryl again. It calmed the hives back down and she finished her chemo.

A new plan has been formulated due to the breakthrough reactions. From now on, she will get the one dose of Benadryl along with the steroid at the beginning, then her Zofran (anti-nausea), then her Vincristine (chemo med) then 1.5 hours of Carboplatin (other chemo med). Then we will stop that infusion for a second full dose of Benadryl and then run the rest of the 1.5 hours of Carboplatin. Then 2 hours post hydration. Hopefully, that will keep the allergic reaction under control.

And in case you have ever wondered what 40 mg of Benadryl in a 44 pound body looks like:

Love to all~

Monday, August 18, 2008

Hurricane, Schmurricane

Now, I admit, I will totally have it coming when the big storm comes. I fully expect it to type my address into it's little hurricane GPS, come here, park itself directly over my house and unevacuated head and laugh in my face. "HA! You jaded long-time Floridian!! See? I can so kick your butt when I want to. I have just been nice until now." I am certain it will put my house through a shredder, just to prove a point. Furthermore, I am certain that when it does that, I will be relatively unprepared. 'Cause that's how we roll here. I have a good solid butt kicking coming. I am okay with it.

However, this one? This "one" barely counts as a "one." It is more of a fraction. As it stand right now, my kids are out of school tomorrow, my husband is off work tomorrow. And the forecast? It's gonna rain. Not even a lot. Just a little. And might be a tiny bit breezy. Not a lot. Just a little. I suspect the kids will spend most of the day in the pool.

Now, that I have said all this out loud, you will need to excuse me. I am going to go stand outside with a lightning rod, cause I certain I am fixin' to get struck down for my jaded long-term Floridian "It ain't ever hit here and probably never will" attitude.

First day of school went well. Everyone came home happy and with good things to say about teachers and friends and school. I survived too, and really, I was probably significantly more worried than anyone else.

(I was going to upload pictures, but Blogger isn't cooperating, proving once again that you get what you pay for. Will try again tomorrow.)

Sunday, August 17, 2008

Sunglasses at Night and Raincoats on Tuesday

The last time I cried at a concert was at a Corey Hart concert on his "Sunglasses at Night" tour.

(Don't laugh. You know you were rocking your sunglasses at night right along with me. I loved me some Corey Hart ... right up there with Rick Springfield back in the day.)

It was May of 1985. I was there with my now-sister in law, who was my best friend all through high school. It was at a venue called the Shrine Mosque back in my hometown. It was hotter than snot. The air conditioning decided it no longer wanted to participate. It was HOT outside, but it was a freakin' oven inside the venue when the air went off. Imagine a concert venue filled to capacity with about 2,500 people ('cause back in the day Corey Hart could sell out a smallish concert) and no air circulating. No AIR AT ALL.

To say it was "hot" is kind of like saying Niagara Falls is a pretty little waterfall. It was like being stuck in the Sahara with only an extra-hot mocha and a space heater to keep you company. Oh, and? Just for fun, they quickly, veryveryvery quickly ran out of water. People were passing out. People were getting sick -- and not in that "Ohhhhhhh, someone had themselves a little too much fun at the concert" kind of way. My now sister in law was one of them. We were 14. People were starting to kind of freak out and it was a rather overwhelming situation. I was scared and worried about my friend. I was all overwhelmed and having visions of the Who concert. And, I was a kid who tended to get somewhat emotional about things.

So, behind my sunglasses, I shed a few stress tears while we were trying to get out of there. Ultimately, we were all fine and I still listened my my Sunglasses at Night cassette tape for several more months until I moved on to Bon Jovi. (Since we're now on the subject of Jon Bon Jovi, by the way: Jon Bon Jovi sooooooooooooo still has it.)

Last night my very good buddy, Anissa, scored us some free Rascal Flatts tickets. I love me some Rascal Flatts!!!!!!!! I was way excited!! I love anybody who can put together three-part harmonies like that. They put on a heckuva show!! Their opening act was the very cute Taylor Swift. She is adorable; I just wanted to pinch her cheeks. We called Rachael, Anissa's daughter, during her favorite Taylor Swift song, "Picture to Burn," and called Mandy during her fave Flatts song, "Life is a Highway." Loved it!!

Now, a few years ago, Rascal Flatts put out a beautiful song. A beautiful song that I never ever listened to. I avoided it like the plague. Love me some Flatts, but this song was an instant channel change for me. I never got past the line that said, "Sarah Beth is scared to death ..." I got out of there in a hurry and switched to a good screaming car dealership commercial fast.

That song was getting airplay in the late summer of 2005, right around the time Mandy was having the neuro episodes that no one could figure out. It was the time when I was coming to realize that she was not going to be one of the NF patients who lived a rather asymptomatic life. It was going to be rough and complicated. The chances were increasing that at some point we would be facing exactly what we are facing now.

Six chances in ten it won't come back again
With the therapy were gonna try
It's just been approved
It's the strongest there is
I think we caught it in time

It was not a song I could stand to hear. And I never did.

I made myself listen to it ... for the first time ... the night before the concert. I didn't want to hear it for the first time with 20,000 of my closest friends at a sold-out show. Because really? Apparently, I am not all that much better at holding in the tears now than I was 23 years ago.

Sarah Beth is scared to death
To hear what the doctor will say
She hasn't been well
Since the day that she fell
And the bruise, it just won't go away
So she sits and see waits with her mother and dad
and Flips through an old magazine
Til the nurse with the smile
Stands at the door
And says will you please come with me ...

They only played one verse of it, during a medley of their depressing songs. It is a beautiful and terrifying song. They have done a lot of good work for pediatric cancer and donate a lot of money and time to St Jude's. Obviously, they have a soft spot for kids waging this battle; for that I am grateful.

Anissa and I had to pause from our rocking good time to shed the tears this song deserves. Too close. Too real. Too scary. Too in our faces.

So, among 20,000 of our closest friends, the mom of the 4-year-old with leukemia and the mom of the 7-year old with a brain tumor stopped and cried.

It took a minute to get back into the swing of things, but we did, and the good time continued. It was a ball and thanks so much to Anissa for picking my number out of the hat to take with you!!! Love you!!

In other news, school starts tomorrow. We have all the usual school supplies prepared ... crayons, markers, scissors, plywood, bottled water, canned food. What? Those weren't on your shopping list? Well, you obviously don't live in Florida. Here? Here, there is a very real chance the second day of school will be called on account of rain. And wind. And storm bands. And some cranky old bitty named Fay.

Stay tuned.

Love to all~

Friday, August 15, 2008

All dreams must end

Our last day began early. Due to nasty weather our scheduled dolphin swim was rescheduled for Monday before we left for the airport that afternoon. The dolphins were very cool and it completed Mandy's dream! She was so excited to meet these guys. Our dolphin's name was Noah and he was a sweetie. So after one more farewell elevator brawl we headed over to check the last thing off Mandy's dream to do list. Enjoy our last day pictures!

Really? It's an elevator??!! We are seriously considering installing a panel of elevator buttons in their rooms for Christmas gifts.

See? He really is a dork.

Sadly, I don't have pictures of the best Zachary story of the trip. When we checked in, they wrongly put us in rooms across the hall from each other instead of adjoining rooms. This was going to be a rather large problem. So, Ronnie hiked 3.7 miles back down to the front desk to resolve the issue, 'cause he is a good guy like that. Mandy's feet and legs were bothering her, so the kids and I hung out in the room-that wasn't-really-our-room. They were coming out of their collective skins to get the party started already. Then Zachary found the safe in the closet. Ohhhhhhhh, this was almost as exciting as the elevator buttons.
Zachary "Momma, there's a safe in here!"
Me "Yea, buddy, most hotels have those in the rooms."
Zachary, possibly drooling a little now "That's so cool."
Me, so not really listening anymore, "Uh huh. Cool, buddy."
Zachary, contemplating his next move, "Momma?"
Me, not listening at all anymore, "Hmmm?"
Zachary, giddy with anticipation, "Can I try the safe out?"
Me, I suck as a mom. I should so have been paying more attention by this point, "Huh? Oh, Yea, sure, I suppose."
Now, at this point, the girls have joined in. Only in my family is locking a safe a spectator sport, but whatever. Until......
Giggles, gasps and whispers. Now, by this point, I am somewhat annoyed at the room-that-isn't-really-our-room by this point. Flight was delayed, room was delayed, kids are anxious and I am watching clouds rool in that could very well screw up my ability to throw them in water asap.

More giggle from the closet and one really loud, "Shhhhhhhhhhhhh, she will hear you, just help me get it out."

Oh. Boy. This can't be good.
"Um, dude? Get what out? Out of what?"
Mandy and Alannah in hysterical peals of laughter, and almost in unison. "Zachary locked his shoes in the safe."
Cue sheepish Zachary, "...And I can't remember what combination I used."
Of course you can't. Now the desk, with all the people who would know how to crack the safe is 3.7 miles away and they all work on island time and will be in no huge rush to come save my son's footwear. Not to mention how much of an idiot I will feel like when I call the front desk to say, "Um, yea, could you send someone down to the room-that-isn't-really-our-room, please? My son locked his shoes in the safe."

Good times.

So, we went all James Bond and and a mere 15 minutes later we cracked the safe and salvaged his shoes. And we still had another 5 minutes before Ronnie came back to take us to the room-that-was-actually-our-room.

So, truly, I love my son to the ends of the earth and back. He is the cutest thing since baby feet and so much smarter than me it ain't even funny. But, my boy child? He is a dork!

Back to our regularly scheduled dolphin programming.

This was a great way to cap off an amazing trip. We headed back to the airport, back to the mainland and back to reality.

This concludes our presentation of Mandy's dream. We can't thank Kristin at Children's Dream Fund enough! She went so far above and beyond to make sure Mandy's dream came true! We love you, Kristin!!! Thanks so much for everything! It truly was her dream come true!

Love to all~

Thursday, August 14, 2008

Water, water everywhere and not a drop to drink

Days 2 and 3 went a little something like this...."Look, kids, water!!!" "Woooooooooo hooooooooo!!!!!!" Followed immediately by SPLASH! There was beach time, pool time, river raft time and water slide time. So rather than bore you with my dull writing I thought it might be better to just dazzle you with pictures. After all a picture is worth a thousand words. It so isn't hard for me to come up with 1000+ words to string together, but I will spare you that on this post. You owe me one. Consider those 1000 words banked for some ridiculously long, wordy post to be used later.

In the meantime, for your reading/viewing pleasure; pictures of my kids in water.

Tomorrow Swims With Dolphins, kinda like Dances with Wolves, but soggier.

Love to all~

101 ways to torment my kids

Today started somewhat rocky, and very early. Mandy woke up about 2 am, sick from yesterday's chemo. This required an late night/early morning bath, a bedding change and convincing the child that taking an anti nausea med actually doesn't make you sicker, but better. She does not believe this and is firmly convinced that I am full of hooey and make up nonsense stories just to torment her with evil medicines. After much cajooling, bribing and convincing she finally took some meds and went back to sleep, in our bed of course. I thought she was going to be sick again around 6, as she was tossing and turning and her stomach was making all sorts of unpleasant noises.but she managed to sleep through it. She woke up around 10 and seemed to do okay for most of the day. We went shopping for school supplies. Let me just say, holy crap, you can spend a whole heckuva lot of money on crayons and loose leaf paper. We are now the proud owners of pencil boxes, lunch boxes, colored pencils and glue sticks and as an added bonus I did not even have to run anyone over with my cart at Target.

Then we were off to meet everybodies new teachers. We lucked out and pretty much won the teacher lottery this year. Zachary got Mrs Marrero, who we love! She is an awesome teacher and he is super excited to get back to school and be with all his buddies and have her for his teacher. Mandy has Mrs Casagrande. We don't know her as well as Zachary's teacher, but I have heard nothing but great things about her. Mandy really liked her today and thought she was "very pretty and nice." High praise indeed from Mandy. Then off to Alannah's.

I sat in a high school gym, with a bunch of scared out of their gourds high school freshmen. One was my daughter. Anyone care to explain to me who the heck I have a daughter in high school????????? She had total deer in the headlights thing going on today. We walked around and found all her classrooms and she s as ready for Monday as she can possibly be. Oddly, she has said I am not allowed to go in with her on her first day of school. I am also not allowed to take pictures or cry in full view of any classmates. I am also not allowed to use spit to wash any remaining breakfast crumbs off her face. Pfft, whateva. I told her she was taking all the fun out of it for me and was going to leave me choice but to shout embarrassing things out the car window while driving away. I threatened to shout, "Make good choices, Alannah Louise!!!" "Be a good friend, bear(her lifelong nickname)!"and my personal favorite, "Don't forget to wipe, flush and wash your hands, Alannah." She says this is unacceptable. She is no fun for me at all.

Mandy had a long day today for a post chemo day and did really pretty well. Monday is going to be a rough day for all of us, except Zachary who is all fired up and ready to go.

Love to all~

Wednesday, August 13, 2008

One day at a time

Rather than trying to type a small(a largish small) novel about the trip and boring you all to tears, I thought I would post one day at a time. Soooooooooooooooo, day one...
We spent the night in Orlando the night before and headed to the airport that morning. Our flight was about an hour and a half late so there was a lot of anxious, "Is the plane here yet?" "When are we leaving?" Is the plane here yet?" "When are we leaving?" "Is that our plane?" "Is that our plane?" How about that one?? Surely THAT is our plane, right?"

Finally our plane arrived and we were off. Alannah and Zachary enjoyed the flight. Mandy fell asleep even before we had tucked the landing gear away for the flight.

The islands look beautiful from above with the emerald blue water and lush landscaping. We surprised the kids after we got our luggage with our ride to the hotel in this

They thought this was the coolest thing since the convertible! Zachary served us all water and soda...

They were all super anxious to get to water, and not the bottled knd that Zachary was serving up. I thought Alannah was going to climb out the window to get to the ocean.

And Mandy? Well, suffice it to say, I think she could get used to this kind of treatment.

The hotel is GI-FLIPIN-NORMOUS!We had a few bumps trying to get checked in. It was storming and nasty outside by that point so we headed off to find food and then grabbed a little bit of beach time before we headed back in.

The skies didn't cooperate for very long.

So, we had to call the game on account of rain and we headed indoors and checked out The Dig. This a a faux archaeological dig with "relics" taken from Atlantis. It is also one heckuva cool aquarium.

We were all wiped out after our huge day. So, we grabbed some dinner. Mandy and Zachary had a knock down, drag out, all out bar fight brawl over who pushed the elevator buttons. This was to become a reoccurring theme during our stay. The fact that there was no bloodshed as they elbowed their way to the buttons every single day amazes me. So, it was upstairs and off to bed to prepare for an exciting day 2.
Love to all~

Back to reality...

No more beaches. Back to the real world.

Mandy started a new cycle of chemo today. Her counts were good, ANC 2110, platelets 151, so chemo was good to go. A bit of a bump in the road today though. As you might remember, about 2 months ago, Mandy had an allergic reaction to her Carboplatin. Since then we have premedicated with Benadryl and a steroid and she has done well. Today she had a bit of a reaction. It looked like the beginning of hives. I do tend to be just a bit hyper sensitive to this now. :-) As always the staff at All Children's rocked and the nurses and Doc were right on it and put a second dose of Benadryl on board and it promptly started to not look so angry. We were able to finish chemo and it was otherwise uneventful. So, another 9 hour day at clinic, another dose of chemo done. Hopefully, next week, she won't try to have a reaction again. Cause really, that's just no fun and needs to stop.

I am going to start going through pictures and start the first post about Mandy's dream trip. Fasten your seat belts!

Love to all~

Tuesday, August 12, 2008

Home, safe and sound

We are home and it was a great trip! I will post extensively with photos, etc in a little bit. In the meantime I will give you a tease with what Mandy said as we were getting in the cab to head back to the airport to come home. She looked back at Atlantis, waved and shouted, "GOODBYE, ATLANTIS!!!!!! ALL MY DREAMS CAME TRUE!!!!!!!!

It doesn't get any better than that. And, really, what more could you ask for?

Love to all~

Friday, August 8, 2008

We're leaving on a jet plane...

We had dinner last night with our dear friends the Firios family. She even made Cheese Ravioli for dinner! How much does Mrs Firios rock?! The kids swam and played and the grown up chatted. It was a great start to the weekend! Thanks, guys, for letting us invite ourselves over! :-)

We are at the Orlando airport, waiting for our flight to take us up, up and away to the Bahamas!! The fact that there was any sleep in the Orlando hotel last night is a minor miracle. If I had $1 for every time Mandy has said, "I AM JUST SO EXCITED!!!!!!!!!!" well, I could singlehandedly pay for the next Wish trip for the next family! :-) All three kids are drunk with anticipation! In almost exactly 2 hours, we should be landing on Bahamian sand and we can't wait! We gots our sunscreen, we gots our camera and we gots our party attitude and are outta here! Well, okay, not yet exactly. But, soon! Right now, we are doing this.....

Love to all~

Wednesday, August 6, 2008

Bon Voyage

Temp is down. Counts are up. Soooooooooooooo, we are outta here and headed off to fun in the sun in Atlantis! The kids are coming out of their skin with excitement! We are going to go leave counts and temps behind and revel in our family ad enjoy every single second of this trip! We are headed to Orlando tonight and then fly out to the Bahamas Friday morning. Rest your eyes over the weekend, good people. Come Tuesday you will be forced to endure many, mandy, many, many pictures!

Love to all~

Tuesday, August 5, 2008


So, just for fun, Mandy has decided that now would be a great time to fire up a low grade fever. She has been running around 100.2-100.8 since yesterday. We ran up to clinic today. Her counts were through the roof. ANC 4290, etc, etc etc. That's all good. They drew cultures from her port, but don't think anything will grow. Also good. All indications are that she is fighting something viral. We will get cultures back in 24-48 hours. We go back in tomorrow for more counts, to be sure.

Right now, if we go, or if we don't is up in the air to say the least. Monitoring her temp overnight tonight...

Please send up some prayers and cool thoughts.

Love to all~

Monday, August 4, 2008

Take Me Away

I have been in an incredibly foul mood today. Really. If you saw me out today, I would have suggested you cross the street, just to avoid me. Not nice. Until just a minute ago, I couldn't place it. Was I tired? Well, yes, probably. Did I have too much to do? Eh, not any more than usual. So, why the mood, Miss Cranky Pants?

Well, okay. I am the analytical type. Let's examine it. The week is relatively low key from a medical perspective. That's good. We leave on Mandy's wish trip in just a few days. I should be giddy. I should be so excited. I should be, much like the kids, boiling over with anticipation. Yet, today, not so much. I started crying a while ago because frankly, I don't want to go. Don't get me wrong, it will be fun and amazing and joyous. The smiles it will bring to my kids faces will buoy my spirits for quite some time. I am so touched and amazed by the wonderful people at the Children's Dream Fund. Kristin, Mandy's dream coordinator has been so much more than wonderful, I can't even come up with a string of positive adjectives to string together to do her justice. She is amazing. The whole organization is amazing. They really truly are. In no way do I mean to sound ungrateful. But, that being said, I don't want to go. More accurately, I don't want a reason to be able to go.

It is a difficult thing to reconcile. This gift to Mandy, this amazing gift and my feelings of wanting to pack her up and head for the hills and screaming, "No, no, no, I don't want her to QUALIFY for this trip." I am so thankful for this gift for her, yet, I so desperately want her to not have a reason to receive this gift. The parameters to receive a wish trip are a "life threatening illness." I would trade the Atlantis weekend for a weekend at home mowing the yard and doing laundry(and we all know how much I hate that) in a heartbeat. Because to not go to Atlantis would mean Mandy didn't qualify for such an amazing gift, because she was not sick, because she did not have a life threatening illness. I would so much rather stay home and do laundry in blissful boredom with Mandy being a perfectly healthy child who has never even heard of Wish Trips.

That is not the hand we have been dealt though. We will absolutely make this an incredibly memorable trip. We will all have a great time and I will get over this. Her smile, that dimple, that sparkle in her eye that laugh heard 23 miles away...that, under any circumstances is a gift and a joy to behold. I am so thankful to Kristin and the Dreamfund for giving her a reason to smile. As to me and my neurosis? We will be fine, will get over the raw emotions tied up in this and soak up every single joyful moment this trip has in store for us. For that, all those beautiful memories that we are about to make, I am so grateful.

Love to all~

Friday, August 1, 2008

Little Victories

Mandy had a sleepover last night. She slept over at her friend Rachael's house. In the world of 7 year old girls, this is not a big deal. Everywhere, everyday, little girls lay awake, giggling long past their bedtimes and squealing in pitches that only dogs can hear until they eventually pass out from sheer exhaustion or finally heed the parental warnings of, "I really mean it. It is time to settle down and go to sleep." Other than the amount of Advil required by the supervising parents and the permanent hearing loss they suffer as a result of the high pitched squealing it is not usually a big deal. Sometimes, it is.

Five months ago, Mandy was diagnosed with cancer and started chemo. There was a long list of possible side effects on the consent to treat form we had to sign. They don't list them all. After the nausea, vomiting and fatigue, one of the first side effects we saw was to Mandy's psyche. Her confidence and sense of independence was shot. Gone. Kaput. Truth be told, she has never been awash in independence. She had enough not be clingy, but wasn't exactly adventurous by any stretch of the imagination. Confidence? That she had. And had and had and had. Girlfriend had confidence. But independence, not so much. She is the baby of three kids and enjoyed all the frills and benefits that come with that title. But, then she started chemo. And everything changed. Now, anything that was more than a frantic grab away from me was too far. She was(and still is most of the time) afraid to sleep by herself. She is afraid of people she doesn't know. She is afraid of new situations. She has cancer. She was/is afraid. Period. Of just about everything. We work through it, little by little. She is getting there. She is in a much better emotional place now than she was 3 months ago. She is doing amazing and I am so proud of her. She is almost 8 years old and sleeps with me most 29 nights out of 30. She always wants to have a hand on me. It is where she finds comfort and stability. Though not at all standard behavior for your basic, average almost 8 year old, it is standard for her right now and given the circumstances I am perfectly okay with it. I am acutely aware of needing to foster a sense of independence in her. Whenever possible, I encourage her to do things and accomplish things on her own. Suffice it to say, it is a work in progress.

Last night, she got to have a sleepover. Just like any other average 7 year old girl. After group at CCC she went home with Anissa's daughter Rachael. Their son, Nathaniel, came home with us. All three parents involved in this trade off were perfectly comfortable with that fact that there was about a 98% chance that SOMEONE would be driving my daughter across town at 3 am. But, God bless Anissa and Peter they were willing to give it a shot and let Mandy take a swing at it.

In trade, I got Nathaniel, their oldest. He and Zachary went to wallow in Legos the minute we got home and did so until they left a few hours ago. There were a few breaks for food, potty, playstation and swimming, but mostly they were all about building a sprawling Lego metropolis in Zachary's room. They get along famously and had a blast, just being boys. Both boys have 2 sisters and a dad who is on the road in one form or another almost all the time. They both love having testosterone around for a change.

Nathaniel came with not so much as a change of clothes. 'Cause really? He is a ten year old boy. He so doesn't give a rat's behind if his clothes are clean or dirty. Zachary is the same way. Clean, dirty, teeth brushed, or orange, furry, nasty pirate teeth, whatever. If there are Legos, it's all good.

Then, there is Mandy. This, my friends, is a whole other ball of estrogen laced wax. Mandy travels quite heavily. Seriously, girlfriend needs an entourage to carry all the stuff she can't live without when we go anywhere. At one point in her packing process last night I was asked for a second piece of luggage. I'm telling you, if she could get matching 7 piece pink Prada luggage, she would have used it all. And needed a skycap to carry it all for her, thankyouverymuch. She(finally) got all of her stuff packed up and was ready to go. A few hours later, she realized forgot some stuffed dog. She had like 18 others, but forgot the one that really mattered apparently. She was upset, but soothed by borrowed stuffies loaned to her by the Rachael and Peyton. Crisis averted.

So, she steps up to the plate to take a swing at being like every other 7 year old girl. She played and squealed and giggled. First base. She went to sleep. Second base. She slept all night. Third base. She woke up happy and thrilled that she got to have a sleepover and so proud of herself that she did it. All by herself. HOME RUN!!!!!

Now, Anissa is a fellow cancer mom. This is how I managed to go to sleep at all last night. I knew she would go in and check Mandy's forehead before she went to sleep for fever. I knew she got how important this was to Mandy, but would also get how important it would be if she felt like she needed to come to home, to get her home. ASAP. I knew Anissa would watch over her like she was her own every single second. I knew she would understand my need to check in on her and I knew if she had to drive her 15 minutes across town at 3 am, she would only be annoyed enough to make me buy her a Venti Iced Americano and even then, only because it was a good excuse to have a yummy Starbucks fix. I also knew she understood how important it was for Mandy to try this. I struggled to get to sleep with her gone last night. Mightily. But, with my cell phone and the house phone on my pillow, I did fall asleep. Eventually.

Mandy had so much fun. She was so proud of herself. She said to me before bed tonight, "Aren't you so proud of me that I slept over at Rachael's last night, Momma? I had so much fun. Can I do it again someday?"

Sometimes, you gotta let the little victories be the huge victories they actually are. My little girl has been forced into an incredibly difficult situation that a lot of adults can't and don't know how to cope with. She has had her world rocked and it has shaken her deeply. That said, she is doing a beautiful job of handling it. She shows strength and beauty and confidence far beyond her years every single day. There were days in the beginning when she didn't smile. At all. There were days when she was just angry. Furious, really. There were days when she was scared out of her mind. There were days, when I thought she was buried so deep in there that I would not be able to get her back out. There were days when I thought I lost her. All of the beauty and wonder and joy that makes her Mandy, I was terrified it had been lost. Now, I see that gorgeous dimple every single day. Any day that she is smiling, is a good day. Yesterday and today, she smiled. Every day now, she smiles. Everyday now, she flashes that dimple, she laughs that laugh that you can hear from 14.7 miles away and it makes my heart overflow. Does it mean she isn't scared and angry and sad? Of course not. But today and yesterday, she beat it. She is still in a fight. Every single day, she is still in a fight. But today, she won.

Love to all~

Dr Google does stand up comedy

Ok, really, I am easily amused. I admit it. I am okay with it. You could call me stupid, but I prefer simple. It sounds so much nicer. Really, since Mandy was diagnosed, I work really hard to find joy in every single moment we possibly can. This leads me to being easily entertained by things, that well, may not really be so funny to, well, anyone. Or it may be a result of sleep deprivation. Whateva. But, they make me giggle, so I go with it.

As the writer, one of the features this site offers me, is to see the search terms people put in to that causes them to land on this site. We have had many that were just what you would expect, "optic glioma," "carboplatin," and "chemo regimen." I truly hope that anyone who is searching for these items finds some information on this site helpful or that it gives them some level of comfort.

There are others that were obviously people looking for Mandy or our hospital. "Mandy Willis," "All Children's Hospital," and "Mandy NF cancer." I am so incredibly touched that these people care enough to search her out and check in on her. It means more than you will ever know to know people care enough to follow her progress and send her love and prayers.

However, there are the ones that totally crack me up. I so want to call these people up and ask, "What were you actually looking for?" They must have been so disappointed to wind up with us when they Google things like "laundry removal." I thought I would share a few of the funny ones, so you can either laugh at the funny searches or you can laugh at me for being so easily amused. Your call.

In the last week or so, there have been several that have caused me a giggle and in some cases a guffaw and even one full blown snort, well okay, two actually. We had, "very cathartic." Seems appropriate to come across us. "Natalie Willis dancer," yea, that would so not be me that they were looking for. I have two left feet and if it doesn't involve booty shaking, I really have no dance skills at all. NONE. Then there are my two favs, the ones that I deemed not just guffaw worthy but full blown snort like a donkey worthy.

Ok, you have to know my eldest to know just how funny this is. She IS the stereotype for the crazy smart person. You know the one. The person who can spout off the native habitat, preferred food source and mating habits of the wombat, the entire periodic table and the symbolism behind the characters in "Of Mice and Men" without batting an eye. But, common sense, yea, not so much. That part kinda skipped her. Smart as a whip, scary smart, genius smart, scored better on the SAT her 7th grade year than I did the first time i took it when I was a senior. Seriously. She got a 1270. In 7th grade. Sooooo got her brains from her daddy. While at the same time being dumber than a box of rocks. She is either going to need a very good secretary or a very patient husband someday. So, you can imagine my amusement and the amount of ammunition it gave me against my poor eldest daughter when I came across this search term, "brain for alannah." Mercifully, she thought it was as amusing as I did. No clue what this person was actually looking for, but if they find it, I hope they email me and tell me where to order one.

And the final snort worthy search term, "cheese ravioli diet." I googled it myself and sure enough this post was the first result that came up. Okay, really? THAT is a diet I could stick to. Seriously, I would ROCK at the all Italian food, all the time diet plan. I do luvs me some breadsticks.

Love to all~