Monday, June 30, 2008

Got nothin' better to do

It's an odd thing to hate. It's odd to hate the day, like today, where she feels good. I treasure it totally and completely, but on some level I hate it. It makes me hurt. It makes me hurt because it is all too brief. I relish it. I want to savor every moment. I want to bottle it and give it back to her when she feels like crap. I want to have it always there to remind her that she will once again feel good. I want to keep it to remind Alannah and Zachary how much she really does love them and that if she were herself, she would never yell at them the way she does when she feels terrible. I want to keep it to remind me that she is still in there. I want to wallow in the goodness of it all. I want to stuff it in a teddy bear that we can all sunggle every night. I want to inhale it and hold my breath until I turn blue. The cancer, the chemo, the can take her hair,it can take her energy, it can take her appearance. I won't let it to take her spirit, her joy, her love for just about everything. She felt great today. What an amazing joy it is to see that sparkle in her eye, to hear that laugh, to see that dimple. She is farthest removed from her last chemo dose right now. Because she is the farthest from that, she is the closet to herself. She did have a headache today and her eye was bothering her. She fell a couple of times because of the neuropathy. None of these things mattered much to her. She was happy and loving life and having fun.

This journey changes so many things. The little things and the big things. I have always cherished my kids. Always wanted to be a mom when I grew up. They are the single most important things in my life. I treasure listening to them play together, laugh together, and even the bickering. I adore the way Mandy's hand feels in mine every time we walk anywhere together. How I always know she will reach for my hand. How when she is laying in bed next to me she always has to have some part of her touching some part of me. How you can always hear her before you can see her. How Zachary can always make me laugh, just like his Daddy. How I always know he is going to jump in front and hold the door for any woman or girl within 25 feet of the door, because his Momma taught him chics dig gentlemen and he believed me. How you always know when he is thinking about something that could get him in trouble, you can tell by the glint in his eye. That glint is there a LOT. How Alannah can be 42 years old and 5 years old all at the same time. How no matter how much you think you get the way her mind works, she can still surprise you. How she can sit down and in 2 minutes take a simple thought and turn it into an extraordinary piece of prose or poetry. How she still thinks I know things and have answers, even when I don't. Honestly, I already felt like my heart was owned by three kids and had no idea I could treasure it more. I could. I do.

Boring is an amazing gift. Today was a gift. Everyday is a gift. For all of us. Me, you, everybody. Today, we did ordinary stuff. It was great. We were one kid down as Alannah is away at camp. Mandy and I went to the bank and to Target. Zachary played with a buddy. We came home, had dinner around the table with Daddy and went out for ice cream as a special treat. It was an ordinary, average boring day. We loved it.

Tomorrow is Tuesday. Well, ok, today actually at this point. I plan to take Mandy and Zachary over to the pools and water slides at a nearby neighborhood, courtesy of my adopted big brother, Rob. We will play, swim, laugh and have a great time. We will wear ourselves out being silly. We will have a ball and be together and be in the moment of everything being good. We will have dinner, and go to bed, happy ,tired and full. Except, Zachary will have to go to a friends house. He will be spending the night with a friend again tomorrow night as Mandy and I will need to leave for the hospital early and will be there all day. I am going prepared, just in case she has a reaction and she has to be admitted. We will go, they will pump her full of the nasty drugs that are helping her to eventually always feel like herself, but in the meantime make her feel like she was run over by a train.

My grand plans of laundry, house cleaning and lawn mowing...those aren't looking like they are going to happen. I would rather be boring and play with my kids. So, if you show up and are brave enough to wade through the knee high grass to the front door, please pardon the 5 loads of laundry waiting to be folded that are piled on the couch and don't look at the nasty floor that needed to be mopped a week ago. I didn't get it done. I could have. I chose not to. I had better things to do.

Love to all~

Sunday, June 29, 2008


Fourteen years ago today, I was big as a house. Small children could find shelter from the storms under my GINOURMOUS pregnant belly, Indian elephants had ankles smaller than mine and no brownie inside of a ten mile radius was safe from me. Today, I dropped off my first born baby at orchestra camp for two weeks. She is excited, but nervous. I just got a text from her telling me goodnight and that she loves me and misses me. She is such a good kid, if I do say so myself. She turns 14 on Friday. How the heck did that happen? Seems like only yesterday she was spitting up on me every two seconds, pronouncing milk "gunk" and swearing she was going to marry Winnie the Pooh when she grew up. Now she is a socially conscious young woman who I am told looks just like her Momma when she was 14. I still like her and she still likes me, which for a mother/teenage daughter team is a heckuva triumph. We will go down to camp and take her out to dinner to celebrate on Friday. It was quite a different scene than the crazed testosterone laden day dropping Zachary off at his camp. This was a college dorm full of a bunch of geeky, instrument toting, artsy types teenagers. The mother ship has landed for my geeky, instrument toting, artsy teenage daughter.

Meanwhile, Mandy has come up with a book idea for me. Ronnie and I were talking about this website and he VERY jokingly said something about it being a book. Mandy was on board with the idea and came up with a title. Her suggestion, "Diary of a Tired Mom." Really, 'nuff said on that one.

Mandy has a rough week ahead of her. After much soul searching, we have decided to switch clinics. We are moving from St Joe's to All Children's. All Children's has a pediatric neuro-oncologist on staff, which would be very beneficial for Mandy, who has numerous brain tumors. Switching is going to be very, very hard and this was not a decision we came to easily and on a lot of levels it breaks my heart. I do really believe it is the best thing for her though. Change is never easy and this is going to be even harder. Also, due to the allergic reaction she had to one of her chemo drugs, Carboplatin, last time, her treatment is going to be a bit different this time. They will be premedicating with Benadryl and a steroid, not sure which one yet. They will also be taking that infusion for that medication out over 2-3 hours instead of the 1 it was previously. At St Joe's they were planning to hold her for observation for 6 hours post chemo I don't know if they will do that at ACH(All Children's Hospital)or not yet. The fear is that carboplatin allergy can cause anaphylactic shock, so we have to watch it very carefully. One more change too, her treatment day is now Wednesday instead of Thursday. It is going to be really rough, but we really feel it is the best decision for Mandy's diagnosis. We could all sure use some prayers for strength as we go into this transition and for her to handle the Carboplatin okay.

Ronnie is actually home this week. Last week was Denmark, next week is Canada again, this week....jury duty in Tampa. Go figure. I suggested he play the crazy card and bail, but apparently it isn't quite that simple. See, all anyone would have to do was show up while I am in frantic "Where on God's green earth is the freakin' pink Nintendo DS" mode and I would be excused so fast the gavel wouldn't even have time to hit the desk. Of course, they would probably have me institutionalized, whatever, minor detail. I could use a vacation, straight jacket is optional.

That's about it for now. I have grand plans for this week. Getting caught up on laundry, because if I don't we are going to have to seriously consider joining a nudist colony. At some point, I should clean my house before FEMA shows up. And, I need to mow the lawn, though I think that puts my whole Rain Forest in Florida preservation act in jeopardy. I was trying to be Green by letting my backyard be knee high. No? Doesn't sound plausible? Eh, can't fault a girl for trying. If we end up having to join the nudist colony because I don't get the laundry done, the tall, tall grass would be greatly appreciated by my neighbors.

Send some prayers our way this week, if you have a minute. It is going to be a tough one.

Love to all~

Wednesday, June 25, 2008

My mind? Sorry no, it's not here right now. Can I take a message?

There was a time when I was crazy organized. I knew where everything was at every single second. Keys? Over in the basket. Stamps? In the bill thing. The picture of Ronnie and I on our honeymoon 18 years ago? The blue photo album, third from the bottom in the hall closet.

Yea, that was then. That was pre-chemo. Now? Now, most of the time, I have no clue. About much of anything. Today, I was mailing some stuff at my desk. I set down a book of stamps after having addressed one envelope. I addressed the second one, stamps? Yea, GONE. No clue where they went. Twenty minutes later I found them. In the kitchen cabinet. Next to the glasses. Only reason I found them was cause I got thirsty looking for them. I vaguely remember being asked to get Zachary a bowl (which live next to the glasses) between envelope one and envelope two.

Normally, my newly developed idiocy affects no one. Normally, it just costs me an average of 63.7 minutes of my life every day that I will never get back. Normally, it just gives Ronnie and Alannah a good laugh at my expense. For osme reason they find my frantic, constant searching, while muttering constantly how it was right here a second ago for keys, shoes, purses, my brain, whatever funny.I am becoming okay with it. Really. I have become one with the fact that if I don't write it down, there is no way it is going to get done. I fully expect to have to put a post it above my bathroom sink soon that says, "Hey stupid, did you brush your teeth? Brush your hair? How about a shower? Do one of those today?" Now, I never forget medications dosages or names, Dr appointments, last weeks blood work numbers or her weight from last week. I can remember dates of treatment, measurements of tumors and Drs phone numbers. But,anything else? I make no guarantees. Mandy is much like me. The old organized together me. She usually is very organized and knows where everything of everybodies is at all times.

I think , it is possible, that I might have committed a major, MAJOR error. It may very well buy me a spot on the coveted Wall of Fame for WORST. MOMMY. EVER!

Mandy's room was painted on Saturday so everything was in a shambles. We spent Monday afternoon putting things back together. I took this opportunity to regain some of my hyper organized control thing. Yea, right, bad call on my part. I threw away a small truck load of junk. She is 7 and every single piece of paper meant something at some point to her. So, together we went through it all and got rid of about 6 grocery bags full of stuff. To the dumpster. Gone. Ba Bye. I was feeling very proud of my cleaning frenzy. Room was clean and organized and everything in it's place. Ha! I am triumphant cleaning Goddess. So there, messy chaos. Take that.

Then, two days later. Room still clean. I am still triumphant.

"Momma, I can't find my Nintendo DS anywhere," Mandy yells from her oh so clean room. Because did I mention I was triumphant housecleaner super Mom? My cape is on order to complete the super hero look.

"It's around..." Please see page 43 of the mommy handbook, pages 14-23 to read the lecture that followed about paying attention to your stuff. Yea, I know, kind of the pot calling the kettle black when I can't even find my %**$%W#%^W#%^CS STAMPS. But, hey, I am the Mom. Dealing out great big doses of do as I as not as I do are one of the perks of the job. Don't judge me.

"Momma, really, I can't find it anywhere." This is after 30 minutes of hard core searching, the girl had some game playing she wanted to do and the lack of a DS was a real problem.
Cue big sigh, eye rolling from me, "Ok, I am going to help you find it. But you better blahblahblah(Again insert previously discussed lecture here.)"

Uhhuh. Two full hours later. I have now gotten other two kids involved in the search. I have promised a dollar to whoever finds it. I am acting like crazy woman. It is possible I was foaming at the mouth. Nothing. Nada Zip. I tear apart the car. I tear apart the house. I move every couch cushion. Heck, I moved every couch. I went through every drawer, I cleaned all the crap that lives in my car out. Which anyone who has seen my car knows that my heroic, triumphant, super dooper house cleaning self doesn't translate to the car. Ever. It is a rolling trash can.

Nowhere. It is nowhere. Pink DS is officially MIA.

Alannah comes out while I am tearing the car apart. And says, "Momma, you don't suppose it's possible that you threw it away when you were in your cleaning frenzy in Mandy's room do you?" She was speaking in that tone of voice that hostage negotiaters use with the crazy guy in the clown mask holding up the bank.

Now, in my previous life, this would have offended me greatly. How dare you question my superior organizational skills, you mere mortal. Today, nope. Today, this question made me gasp one of those, "Ew, what did I just step in?" gasps and say a word I shouldn't say in front of my 13 year old daughter.

'Cause ya know what? It ain't outside of the realm of possibilities that in the midst of my cleaning frenzy that it somehow landed in, on, or near one of the grocery bags of crap that left the room.

So, now, two hours of my life I will never get back have passed. I am no closer to finding the stupid DS. My super dooper, triumphant cleaning job is now strung out all over the floor like the place had been ransacked by the mob. And I have cussed in front of my 13 year old. Good times.

And of course, the trash men? Yea, they came this morning. And I actually remembered to take the trash cans down to the curb last night. Mainly cause they were overflowing because I forgot to take them down on Friday. Stop it. I didn't have it written down. So I can't even go dumpster diving for it.

Now, I am not saying that I threw it away. I am just saying that I have sure looked everywhere else I can possibly think of. I did look next to the glasses. It's not there. Could you look in some stupid, obscure place in your house and let me know if it is there? And if you see my trash men, could you ask them if they have seen a pink DS? If there is anything I am supposed to do that you know I did not write down, could you please send me a note

Yea, thanks.

Love to all~
*********** EDITED TO ADD************
It has been found! The Eagle has landed! It's all good! And most importantly, it was not me who lost it! Mandy had put it in her purse during the room clean up. Probably afraid that I would throw it away on accident or do something else stupid with it! WOOHOO! Victory, booty shaking, super hero cape wearing, I am triumphant once again dance begins!!

Tuesday, June 24, 2008

Books, boats and tears

It never leaves my mind. Not even for a second. I wish it did. It is unrealistic for me to hope that because she is "just a kid" that she would have any moments where it leaves her mind.

We had a great day today. We went out on an afternoon cruise with the Brad Richards Foundation. It was a great afternoon, with dear friends and a lot of laughs. We went over with our friends the Mayhews. Mandy got to hang out with her very good buddy, Rachael.

Zachary got to hang with his buddy Nathaniel. Zachary, who spends most of his time in a house shared primarily by three girls, always relishes time to just hang with his boys and be a boy.

Alannah made friends with Ariel, Sierra Kesler's big sister. She also got to have Brad put his arm around her and have her picture taken with him! I didn't even get to do that!

She then promptly sat down, texted one of her BFF's and said something similar to "OMG, I just got to have my picture taken with Brad Richards!" Alannah reports the friend texted back "OMG, he is so hot!"

We had a wonderful time. Sherry Tucker was there too. Our kids went to the same elementary school. I got my copy of her new book "Unfinished love:Walking by Faith through Pediatric Cancer." Sherry is an amazing woman, whose son, Zach fought a courageous battle with a very aggressive brain tumor. He waits for her in heaven now. This is a family that have chosen to walk an unthinkable journey with a grace and a strength that I am in awe of. They reach out to families battling cancer through a foundation established in Zach's honor. She is one of the most inherently good people I have ever met. I consider it an honor and a privilege to call her my friend. Please, check out her book. It is heartbreaking. This is a real little boy. It is beautiful and heartwarming and inspirational, but it is also heartbreaking.

We went to the Mayhew house for a while after the cruise and hung out. We came home about dinner time with three tired kids ready for dinner and bed. Mandy had reached her breaking point. She was exhausted. She was just really tired and feeling overwhelmed. She wanted me to lay down with her in my bed until she fell asleep. I did. While I was lying next to her with her snuggled up next to me, she said, "Chemo changes so many things." I said, "In what way, baby?" She replied, "It changes what foods I like. And it changes that now I am scared to sleep by myself."

She wasn't angry, she wasn't crying, in that moment. She was just overwhelmed and sad.It broke my heart. I just said, "I know, baby. I am sorry" and held her until she fell asleep. Really, what else is there to say to that? I watched her sleep and cried quietly.

She had a lot of fun today. So did Alannah and Zachary. So did I. But, it never leaves. We would rather have been home, with no reason to be on that cruise today. Still, at the end of the day, under the stress of fatigue, it comes out from under the bed to haunt her, just like it does me.

I have said numerous times, it is day by day. Sometimes, it isn't. Sometimes, it is minute by minute. We all do the very best we can, every single day. We smile absolutely whenever we can and cry when we have to.

We are so grateful for the very special friends this journey has brought us. We are so grateful for the friends that stand by us and hold us up and hold our hands. I am so thankful for the people like Kasey and Brad who provide fun outings to give our minds something else to occupy them for a while. I am so thankful for people like Sherry, who have been put into a role of being an inspirational support, when she would rather just be an ordinary mom of two kids. I am so thankful for my and Ronnie's families, who call or email with love and strength. I am so thankful for the friends who continue to be there, even when I don't return calls for weeks at a time. The world is full of good and wonderful people and we are so blessed to have so many of them in our lives. Because in all honesty, there are days when we just want to curl up and cry ourselves to sleep. There are days when I do just that. Then the morning comes and we try to stick the monster back under the bed. We get up and find more reasons to be happy, more ways to find joy, more things to be thankful for and continue to be amazed at how easy it is to find those things.

Thanks as always for checking on her. Love to all~

Saturday, June 21, 2008

Dance Fever

Nope, that is not a mug shot of Alannah being arrested in Vegas. Rather it is a pre-recital, hip hop, ready to dance her butt off, Alannah. After many intensive hours in the Momma hair and makeup studio we were ready to tackle another dance recital!Yes, my daughter is wearing some seriously trashy make up. No, I do not let her wear that under normal circumstances. Yes, that is the worlds reddest and ugliest lipstick, but how cute did her hair turn out?! The makeup is all stage makeup and a necessity so she didn't just look like a big white blob under the lights on stage. She rocked out to a way cool hip hop number choreographed to "Fuego". She had it going on tonight up there!

Our very dear friends Diane and her son Nico came over to make the day special! We are always so happy to see them!

Alannah and Nico

Mandy got to see her dance teacher from her younger years that she absolutely adores...Miss Lora!

Mandy and Miss Lora

And a few performance shots, not the greatest quality because of the light, but you get the idea...

Hopefully, weather permitting we will all be headed to the beach tomorrow!

Love to all~

Thursday, June 19, 2008

Nuggets and sparkles

Today was a good day. We went to clinic for a finger stick. Her blood counts were good. We had yummy lunch with our buddies the Mayhews. We went to the bookstore. We went and got a manicure and a pedicure. The lovely lady who was doing her nails looked at me like I had two heads when Mandy said, "I want half of my nails pink and half purple and sparkles on them, please." I think it is possible this is not a request she gets everyday. Go figure. Clearly, she needs to explore her inner 7 year old diva more.

We went off to group at CCC tonight. It was ChicFilA for dinner there tonight. Woooohoooo!!!!! ChicFilA is like crack to my kids. I am surprised it didn't bring on a seizure just looking at that many chicken nuggets in one place. Even Mandy ate tonight!

She is having her buddy Rachel sleep over tonight and she is downright giddy. She is in a great mood, had pizza she didn't eat for lunch, got multicolored, sparkly, incredibly tacky looking fingers and toes, had ChicFilA she actually did eat for dinner, hung out with her buddies at group tonight and now gets a sleepover. All is right and good in Mandyland.

Thanks for checking on her!
Love to all~

Wednesday, June 18, 2008


Sometimes I think it isn't in the forefront of her mind. Sometimes, I think maybe she has forgotten about it, if only for a second. Most of the time when I think that, I am wrong.

I had put Mandy to bed tonight. I laid down and snuggled her for a while. She was mostly asleep. I left the room and about 10 minutes later she comes out and says,
"Momma, can cancer kill you?"

The conversation was just what you would expect...yes, it can, but, your kind of tumor is very, very treatable. We have good Doctors and good medicine, blah blah blah. At the end of the day, she is scared she has a disease that could kill her. She does. I want to lie and say no, cancer doesn't kill people. I want to lie and say I absolutely know it will all be okay. I want to lie and say there is nothing to be scared of. I really want to say that.

But I don't. Because I believe in being honest. I reassure her while telling the truth, sometimes certainly a very watered down version of the truth, but the truth. Maybe I should lie....I don't know.

I think it never, ever for a second leaves her mind. That is no way to be 7 years old.

Tuesday, June 17, 2008

Dreams and Itches

Mandy is still a bit itchy and somewhat polka dotted. We are pretty sure if you connect the dots just-so on her arm you can make an alligator or a shamrock. She has not needed more Benadryl since Sunday.

We have exciting news! I got a way exciting email today from Kristin at Children's Dream Fund! Mandy will be headed to the Atlantis resort in the Bahamas at either the beginning of August or the beginning of September for three fun filled days and 2 nights. She is going to be kind enough to take the rest of us with her! :-)She is super excited! Either date should fall in a two week break from chemo period so she should be feeling as good as possible. It looks like a blast! All three of my kids were born with the optional set of gills, so anything involving that much water time makes them froth at the mouth with anticipation. We should the final date soon and the official countdown can begin! Mandy's wish trip should be a dream come true for her!

Thanks as always for checking on her! Love to all~

Sunday, June 15, 2008

Fun, fun and more fun

My very very favorite quote from our very fun filled weekend, is brought to you from the still somewhat polka dotted and sporadically medicated Mandy, "This wasn't just
fun, this was FANTASTIC!!!!!!!!!!

After Mandy's little adventure into the wonderful world of nasty allergic reactions on Thursday we were not sure if we would still be able to follow through on this weekend's fun plans, but thanks to her "I am still a party girl, darn it all" attitude and the maker's of Benadryl, the plans went off just as we had hoped.

After Alannah's marathon day of rehearsal's and auditions on Saturday we headed over to Orlando. Our first stop, was the Give Kids the World Village. We rode the carousel, played Putt putt golf, ate dinner, ate ice cream and had a ball!
Mandy loving the carousel for the 90 billionth go around

Alannah kicking her Daddy's butt at air hockey

Zachary trying his best to turn golf into a contact sport

Then, one of the few perks(other than a paycheck and health insurance) of Ronnie having to travel all the time is the points earned at hotels and airlines. We used some of those points to score a room in Orlando for the night. The kids swam in the hotel pool for a little while and then hit the hay early as we had a big, huge, awesome day in store for today!

Fore the Children had been incredibly kind and generous and given us tickets to Discovery Cove! The kids were crawling out of their skin excited!! Mandy had made a list on Friday of what to pack and was up first on Saturday and got straight to packing! So cute!

So, early this morning, we were headed over to swim with dolphins and rays and fish, oh my! (Break for a moment so I can sing a few "Wizard of Oz" tunes!)We had an amazing time!

Zachary kissing Scarlett, the dolphin(Alannah and I LOVED her name!)

You should have seen the size of this birds poop! Zachary was so impressed!Boys!

Alannah and I have long given "dolphin rides" in our pool. But, we suck compared to how cool this was!

Note to the advertising staff for Discovery Cove, Mandy and Zachary have a new tag line for you, it is only somewhat of a slap to Alannah's version of a dolphin ride. "Discovery Cove...more fun than your sister!" Discovery Cove, have your people call my people and we can set something up for you to have the copyrights to that one.

We are home and exhausted and thrilled as it was an absolute BLAST! It was great to get away as a family and just let everything go and have fun. Thank you Dana and Mark at Fore the Children! It was the chance of a lifetime and will never be forgotten!

I leave you with this. My husband is the love of my life, the father of my children, the squisher of bugs, the fixer of computers, the Xanex to my soul when I need calming, the comedian to our children when they need a laugh, the one who makes up stupid songs and stories daily(ask the kids to sing you his Canada song sometime), a provider, a comforter, crazy, scary intelligent, can always make me laugh and chief executive officer in charge of listening to me be neurotic. I can not imagine this journey without his strength and love. He was home this weekend for less than 72 hours. He leaves again tomorrow and will be home for about 12 hours total over the three weeks. As hard as it is for us that he is gone so much, it is just as hard for him to have to leave. He is incredibly good at what he does and we are so lucky that he takes such good care of us. The folks at his office have always been so kind and supportive. For all of that we are very grateful. My husband was not taught how to swim as a kid and generally speaking doesn't much care for most things involving water. But, because he is a rockstar of a dad and husband he spent his day in the water with a zillion sea creatures. Baby, we love you and are so lucky to have you as a dad and a husband. Happy Father's Day and safe travels. We will always be here waiting.
Only the very best non-swimming, non-water liking, "I prefer my sea creatures with tarter sauce thankyouverymuch" dads would do this for his kids.

Happy Father's day to all the dads out there! Thanks as always for checking in. Love to all~

Friday, June 13, 2008

Me and Dr Google

She is still polka dotted. But not looking quite so much like the one eyed, one horned, flying, purple people eater she was yesterday, so that's improvement. She has been on Benadryl every six hours today. I gave her one last dose before bed tonight and will see how she does tomorrow.

I did my version of, "I'm not a Doctor but I play one on TV" last night and consulted my favorite physician: Dr Google. I have learned through that and the other moms of optic glioma patients that while a carboplatin reaction isn't common per se, it isn't uncommon either. Most patients tend to do well premedicating with Benadryl and a steroid and then doing the infusion over a longer time, say 3 hours instead of 1 to let that drug drip in. So, we will see what the Docs have to say and I will make those suggestions, if they don't already have those ideas.

I am surprised she was awake and even mildly coherent today. If I had that much Benadryl I would be snoring loudly and offensively while drooling on my pillow. Mandy, on the other hand was awake, slow, but awake. Astounding.

We are supposed to head over to Orlando tomorrow, but we will wait to see how Mandy is tomorrow. We aren't supposed to leave until the afternoon, which is good.

Alannah has her audition for next year's youth orchestra tomorrow morning and then a studio rehearsal for her dance recital tomorrow afternoon. Here's to hoping she doesn't get them confused and play Mozart on her viola at her Hiphop dance practice and dance to "Apple Bottom Jeans" at her youth orchestra audition!

Hope everyone has a great weekend.

Thanks as always for checking on her. Love to all~

Thursday, June 12, 2008

More from the "Don't see that everyday" file

Leave it to Mandy. She is nothing if not new and inventive. She does not believe in being like every other kid.
Today was Week 16 since treatment started. It was her 12th dose of one of her chemo medications, Carboplatin. Apparently, she decided today that 12 was her unlucky number.

Her counts were great, which surprised a number of people as she really Looked like they would be in the toilet. But, they were not, so chemo was ordered. She only had Carboplatin this week with no Vincristine(the other chemo drug). About 3/4 of the way throughthe Carboplatin she developed hives. And in true Mandy fashion, why just develop hives, when you can develop the worst case of hives seen by the Dr or three nurses. It took 40 mg of Benadryl followed by another 25 mg of Solumedrol to get them under control. Thank God, her airway was never compromised. But, it was quite scary. She was miserable. She literally had hives from the top of her head to the soles of her feet. She had hives in her ear canals, between her fingers and toes and covering her back to the point that it was just one big purple welt. It wasn't pretty. Poor baby. We obviously were not able to finish her chemo today.

So, thankfully, she will have two weeks off from meds now and when she goes back it will be with some added precautionary measures. The Carboplatin will be administered in the day hospital, with her vital signs taken every 15 minutes. She will also be premedicated with at least Benadryl and possibly Prednisone or Solumedrol as well. And just to keep the fun rolling, she still has the burn like wound, that they believe is caused from an allergy to the adhesive in the bandaid over her port. Yea, good times in the Willis room today. We were on the fence to stay overnight at the hospital for observation. We did come home though and she is to be on Benadryl every 6 hours until bedtime tomorrow night. She still has hives, but they are far less angry than before.

The bigger problem than just today is how to proceed if they can't get this allergy under control. There are options to desensitize her. There are not many available protocols for optic glioma though, so a complete switch of chemo drugs is unlikely. I just don't know yet. The Docs are all going to talk about it at the meeting on Tuesday and then go from there.

Mandy is asleep. I am exhausted, but will be up all night playing connect the dots on my daughter. We have some exciting weekend plans, so, really hoping she will be okay for them, for so many reasons.

That's just how we roll here...keep em guessing, keep em on their toes.

Thanks as always for checking on her. Love to all~

Because I can't say it any better

From my 13 year old daughter, Alannah, whose writing skills I wish I had:

Did you know that anger has a smell?

A feel, a taste, a sound?

The stench of stress and pain

The salty taste of held-back tears

The strained sound of a rubber band

Stretched to its breaking point.

Oh, yes, anger is tangible

Tangible and terrible and painful

But here's the thing about anger:

Anger is the absence of emotion.

Or, better, the suppression of it.

And maybe there's a cure

And maybe that cure--

Is sadness.

Sadness is the opposite of anger

A conglomeration of twisted, complicated feelings

And so the release of sadness is the absence of anger.

So that whole "don't cry" thing--

That's a load of crap.

Cry. Just don't cry alone.

Monday, June 9, 2008

My prayer

It breaks my heart. It really does. It breaks my heart into a million pieces to see my daughter struggle, be scared and be angry. Mandy has always been a joyful little girl. She has always been quick with a smile, charming and with the nurturing heart of a mother. It is still there. I know it is, because I still see it. Right now, she is mad, really mad and scared, really scared.

Mandy was having a rough night tonight and was screaming and angry and upset. Mainly, she was tired and feeling generally crummy. She screamed at me and Alannah and Zachary about just about everything tonight. Finally, I sent her to bed. She was furious, to say the least. She was completely inconsolable.

After the storm passed, we had a long talk. She finally opened up about a lot of her emotions. She said she was angry, and scared. She said she didn't mean to act that way and that it wasn't her fault. She said cancer was all she could think about. It broke my heart into a million tiny pieces.

I hate this. I hate it with every single fiber of my being. I would give ANYTHING to take it from her. I can't. So I said this instead:

"This tumor is a tiny little thing and we will not let it take over everything. We will not let it take over you. Everything else is the same. You aren't lost. You are still the same Mandy. I am still the same me. We are still the same family. I know how angry you are. I am angry too. I know how scared you are. I am scared too. We will help. But, don't be mad at us or at your friends. Let us love you. Love us back. Together we can get through this. We can be scared together. We can even be mad together. But, we can't be mad at each other."

It was the single hardest moment I have ever had as a mom. I so don't feel qualified for this sometimes. All I want is to help my baby, help her heal, help her be strong and help keep her spirit and her joy. Please, God, help me do that for her.

Sunday, June 8, 2008

Cathartic (adj.)

I was sitting and posting to this site the other day. Alannah says, "What are you typing?"

"I'm typing on the website."

"Do you like that?"

"It's very cathartic, sweetie."

"What's 'cathartic'?"

"Go look it up."

So, off she heads to the computer, looks it up and shouts back, "Uhhhhhhh, Momma, you're evacuating your bowels?"

"Well, I suppose that's one way of putting it."

"Ohhhhhhhhhhhhh, you meant the emotional purging."

"Well, yeah, but, same difference."

Thank you, all of you

One of the blessings this journey has brought us is the gift of seeing how much pure goodness is in so many people. Mandy's garage sale fundraiser was a great example of that. A group of great women gave up their Friday and Saturday to put this together. Kristin, Kilsys, Kelsys, Patty, Emily (who even gave up her house to host it), Kelly, Sam, Charrita all put a ton of hours into this day. SO many more people donated items or came out to shop. It was a huge success and I can't thank them enough! In big and small ways, so many people helped this day be the fun and successful day it was. I have said numerous times, it is not WHAT people do, be it simple things like a "thinking of you" email or phone call or major donation of time or money, that blesses us, but THAT they do. It touches our hearts so much to know that so many people care about Mandy and our family and do so much to reach out to us to show their love and concern. That love and those prayers mean more than we could ever express.

Thank you to each and every person who has reached out to our family in big ways and small. It means so much and is such a blessing to be able to see so much good in the world. The headline on this blog says, "One little girl fighting NF and cancer....with an army of love behind her." What a beautiful gift to be reminded every single day that that "army" extends to so far, to so many people, family, friends and even strangers.

Thank you to all of you who made this weekend so touching, humbling and amazing.

Love to all~

Friday, June 6, 2008

Bargain Hunter's Paradise

I am exhausted and off to bed. I spent the evening over tagging stuff and moving stuff for the garage sale tomorrow. Just a reminder, the garage sale for Mandy's Fund at the Children's Cancer Center
is later today . There is a TON of stuff! Tv's books, housewares, clothes...You name it! We would love to see you there!
1210 Thomas Jacob Place
from 8 am until noon on Saturday June 7.

Thank you from the bottom of my heart to these women burning the midnight oil and doing so much work. Also thank you to all who donated stuff!

Goodnight all.

Stability ain't boring!

I just got a call from Nurse Bonnie at the clinic. Mandy's MRI is stable!! This is really the best we could have hoped for! It is too soon to see anything smaller. So, WOOOOOOOHOOO!!!!!!!! Please commence happy dancing wherever you may be! :-)

Thanks for all the prayers and support! Love to all~

Thursday, June 5, 2008

WANTED:One Radiologist

I tend to be a bit of a control freak. The fact that somewhere out there is someone who knows the answer to all my questions and they aren't telling me makes me crazy. If I had the radiologist's phone number or address I would so be on his doorstep, disk in hand, asking him to share the answers with me. Sadly, all I have is me and my computer, Dr Google, a bunch of images from today on a disk and my imagination. Not a great combination. I think I know what I see on some things, but given that I don't have a bunch of initials behind my name I am not going to publish my novice speculation here.

So, if somewhere out there, right now, is a radiologist, willing to work for cold left over pizza, please give me a call. Otherwise, I will be waiting until next week to get the results. I can't tell you how much I hate this.

Today was long and rough. We had a horrible moment first thing at the clinic. Miss Vicki, Mandy's favorite nurse, accessed her port. She has done this every single week for the past three months and Mandy has grown as comfortable with all this as we could possibly hope. Emla cream on the port numbs it and the accessing really doesn't hurt much normally. Today, for some reason, it hurt. Badly. She looked at me, from behind her mask, with huge eyes, filled with tears and said, "It hurt, Momma." The look in her eyes absolutely broke my heart into a million pieces. It was utter betrayal and fear.

So, I had to think fast and threw myself under the bus. Normally we go to clinic for a finger poke, the nurse put the Emla cream on and we go have lunch and come back. So, normally I don't put on the Emla cream, just because that is the way it works out. Today, I put it on at home because of the MRI. So, when she asked why it hurt and was so upset I said, "Because Mommy put it on wrong. I am so sorry." This was a complete lie, and I don't think she bought it. However, my hope with this suicide mission is that she blames me and next week and for most weeks thereafter, when the nurse does it, she won't be anticipating pain. I am already afraid we have lost all of her tiny comfort zone, but hopefully, my big fat lie, will help ease the newly regenerated anxiety next week. She has a nasty rash above the port and we suspect that is the genesis for the pain. Not sure what it is, except that it is topical. We suspect a reaction to either bandaid adhesive, the Emla cream or the Glad Press and Seal, used to cover the cream while it does it's numbing job.

Her bloodcounts were down this week. Thankfully, the magic number where they will withhold chemo has now been dropped to an ANC of less than 500, so we made counts and got chemo today. She did need Ativan afterwards as she was feeling yucky in the tummy. I suspect it was because she hadn't eaten anything since 8 pm the night before and had all those meds today. So she has had an awful lot of drugs coursing through her system today.

The Doc came in to do her exam before the MRI. She now has no reflexes at all in her lower extremities. Nothing at all from the knees response at all. Most likely Neuropathy from the Vincristine(one of the chemo drugs). Could be something more sinister, but doubtful and hopefully not. She is also down almost another pound in weight. She lost another .7 lbs in the last 3 weeks.

So, all in all a very exhausting and draining day. And now we wait. And wait. And wait. And wait. Still taking applications for an in house radiologist. Any takers?

Thanks as always for checking on her. Love to all~

Wednesday, June 4, 2008

Animal House

So, Zachary and I are packing for camp this afternoon. I have my little checklist and a pen and am sitting on the floor, suitcase open, directing his packing efforts. Numerous exchanges going something like:

"You need to get two swimsuits, buddy."

"Yup, got it,momma. What about the SuperSoaker Watergun?"

"That will go in last"

Different versions of the first sentence ... remove two swimsuits, insert, 5 outfits, sunscreen, bug spray, toothbrush, partridge in a pear tree, you get the idea. And all exchanges end with:

"What about the Supersoaker Watergun?"

"That will go in last."

Really, the watergun was by far his greatest concern. Well, really, his only concern. This was never more evident than when we got to the personal hygiene part of the list:

"Okay, dude, need you to get a bar of soap."

Child looks at me, head cocked to the side like a confused dog, and, completely perplexed, says, "What do I need soap for?"

After explaining to him that while the realist in me knows that that soap will at best be used to soap the windows of the cabin, the mommy in me truly hopes that at some point over the next four days it will actually come in contact with him in a shower-like setting. (Maybe he could lather up, fully clothed, while being shot with the Supersoaker watergun?) Yup, that's my boy. I am so proud.

Finally packed, with Supersoaker Watergun securely in place, we arrive at camp. It was like walking into a scene from "Animal House."

There are 13, count 'em, 13 boys in this one cabin, with two counselors. I open the door and have to immediately duck to avoid being hit by a water balloon. There is a boy in front of me , arm-farting; another is hanging off the side of a bunk bed; three more are taking down the counselor in a wrestling maneuver that would make the WWF proud. They were one stripper short of a frat party.

Zachary was in HEAVEN!!!! This was so a "No Girls Allowed" zone. And frankly, no girls would want to be there! I thought I would get all teary-eyed, 'cause that's what I do, but, nope; there was no room for sentimentality in this joint. I made that boy's bed and got the heck out of Dodge. Waaaaaaaaaay too much testosterone in there for me, thankyouverymuch! He will have a blast. I will miss him immensely, and when he comes home Saturday, I will greet him at the door with Lysol and Febreeze.

We fed Mandy her obligatory Carrabba's cheese ravioli tonight. She ate it up, somewhat happily, and will be without until tomorrow early afternoon. She was way tired and stressed tonight. Tomorrow will be an incredibly long and stressful day. We have to be at the clinic at 9:30 a.m. to get her port accessed and draw blood for labs and see the doctor. Then the MRI, then recovery, then back to the clinic for chemo, then home. Please keep her in your prayers for good results on the scans. We won't hear those results for until next week, most likely

Alannah finished up middle school today. She is officially a high school freshman right now. I did cry about that one this morning. I just can't believe she is a freshman already. She is a beautiful and amazing young woman and makes me proud every single day.

The Mandy's fund garage sale fundraiser is this Saturday! Come one, come all! There is a TON of stuff and I hear a rumor, even a bake sale. YUM! It will happen at 1210 Thomas Jacobs Place, Brandon, and will run from 8am till noon. Hope to see lots of you there. All the proceeds will go to benefit Mandy's Fund through the Children's Cancer Center. Thanks so much to everyone who is doing so much to put this on and donate items and cheer it on! So, come on down, go bargain hunting and say hi!!

That about covers it. Thanks as always for checking on her. Love to all~

Sunday, June 1, 2008

Movin' On Up

So, we have moved. Thankfully, this time, required no boxes, moving vans or duct tape. Welcome to Mandy's new website. Caringbridge has been very good to us, but I wanted to be able to do some things that Caringbridge doesn't allow me to do. For instance, I can include pictures right in the body of text now. Like this...pretty cool, huh? I can even add short videos, though I can't prove that one right now, as I don't have any stored here.

My tech guy, aka Ronnie, is in the process of adding a gizmo so that you can get email notes for when I update the site, just like on Caringbridge. I believe it is up there now. There is a little box up there on the right hand corner that says Subscribe via email. Enter your email address in that box and it will send you a notification email when teh site has been updated, just like Caringbridge. So, all the same good stuff with a few more added features. We are still unpacking and hanging pictures on the walls, but, let me know what you think of the new place! :-)

Let me give you the tour...the information to donate to Mandy's fund is on the side over there. There are links for sites of our friends and great resources. More will be added as I find my way around this. Past posts are searchable by date or topic. Spiffy stuff, huh?

This week is a mixed bag of to-dos. Wednesday is the last day of school. We have already covered how that is good and bad.

Zachary is going to sleep away camp for a few days, which is great and thrilling for him... tough for the Mommy. I am certain he will be filthy and disgusting and exhausted when he comes home. All things a 9 yo boy adores!

The last day of school is also Alannah's last day of middle school. She will be starting high school in the fall. How the heck did that happen??? It seems like only yesterday she was constantly spitting up on me and not sleeping.

The fundraiser garage sale is happening on Saturday. A huge thanks to Kristin and Emily and all the wonderful folks who have worked to put this together for her. Thanks to all of you have donated stuff. It is going to be happening at 1210 Thomas Jacobs Place in Brandon. Hope to see some of you there!

The other big thing this week is Mandy's MRI. Thursday is going to a long, rough day. We have to be at the hospital early that morning, get her port accessed, draw blood, go over to the day hospital, be put under a general anesthesia, have the MRI, which should last about 2 hours, be in recovery for a few hours, go back down to the clinic and have chemo, which should last another 3 hours and then home. Anesthesia with Mandy is always scary. Mandy has a condition called Malignant Hyperthermia. This is a most often fatal response to certain types of anesthesias, predominantly the inhaled varieties. We almost lost her once back in 2003 when she spiked a temp of 106.3 several hours post anesthesia. Since then, they figured it out and no longer give those anesthesias and she has been fine every time since then. That being said, they always hold her for a while longer than average to verify that she is okay. So, Thursday is going to take forever. Revealing this is new for me, I actually normally don't share what the day of the scans is for her...I am just funny that way. But, I figure a few more prayers dedicated to her that day are a good thing.

As to the scans, my gut says it is too soon for anything to be different, good or bad. I am not sure how no change, if in fact that is what the scans show would be handled by the Docs. Time will tell. Please send up some prayers.

Hope everyone had a good weekend. Let me know what you think of the new place! Thanks for checking on her. Love to all~