Wednesday, July 30, 2008

Doctors and Dreams

Poor Mandy. This was supposed to be a week off. She so got jipped. There was no chemo this week, but holy flippin' cow, it has been one Doctor after another this week. She needs a better secretary in the worst way. One who only schedules pedicures and lunch with friends at food joints that give you a toy with the meal. Sadly, she is stuck with me. And I scheduled a whole big bunch of Dr appointments this week. I stink.

Monday, she had a neuro-pysch evaluation. This is an eval that should give us some indication of any neuro issues she is having. From processing deficiencies to learning disabilities, this is a barometer. I was worried about this one going inbecause of the information that may come out of it. Mandy has a bit of anxiety about new Dr's. For good reason, she doesn't so much trust them. So, we talked about it. This appointment was just a "talking appointment," as she calls it. Loosely translated into Mandy speak, "Stay the heck away from me with your Dr who-ha. If you have prove you have no needles and no blood pressure cuffs, I will CONSIDER allowing you to talk to me. Thankyouverymuch" This day, with this lovely Dr, Mandy was not so accommodating. She couldn't get through the tests. Her anxiety just got the best of her. So, after about 2.5 hours, we bailed with the very sweet Dr's blessings(she really was wonderful). We will take another swing at that one in a couple of weeks. Mandy will be more comfortable there the next time around. I hope. there is a lot of information to be gathered in this appointment. Frankly, some I really may not want to see. But, all of it I really need to see.

Tuesday, we drove to Orlando, about two hours away to see her neuro-ophthalmologist. It was a good appointment. Again, from time to time, her whole "unusual presentation" thing works in our favor. Doc said he was surprised that she had no vision impairment, given the size of the tumor on her right optic nerve. Frankly, given that I am not a doctor and don't play one on TV, I don't know why either, but I care even less. We will just take that blessing, tuck in our pocket, pay our copay and get the heck out of Dodge. Thank you God for the blessing of her eyesight being stable. 'Nuff said.

Wednesday, Oncology clinic for a finger stick to check those all-over-the-map lately counts. Good news on this one too. Her counts were great! Had I ordered them online and had them shipped in via Fed Ex from she could not have had better counts. And I didn't even have to pay shipping. Her ANC was 1670, platelets 211. This clears the way for the big event of the day....

MANDY'S DREAM PRESENTATION!!!!! Kristin from the Children's Dream Fund along with her new assistant Jennifer were supposed to meet us for lunch at Mandy's favorite lunch joint, Chic Fil A. Sadly, they were closed for remodeling, so we scooted across the street to McDonalds. Kristin, as always, was awesome!! She brought Mandy a stuffed dolphin that as you can see was as big as she is! Kritin, Mandy and her new dolphin named Didi, all with big smiles!

Check out his incredibly awesome cake they brought for the presentation!

We will have 4 days and 3 nights at Atlantis, just a week from now! Mandy is beyond excited! We will swim with dolphins, we will lounge pool side, we will go down waterslides until we can slide no more. We can't wait! This is such a hard time for all three of the kids. Seeing the smiles on their faces today made me giddy! Thank you so much Kristin and everybody at Children's Dream Fund!! Brace yourself to get really sick of pictures! Just to prepare you and get you in the groove for all the pictures you will be forced to say, "Awwwwwww, how cute" to after the trip, here are a few more pics from today.

Thank you so much to Kristin and Jennifer for making this day possible. Thank you Mary Ann and Shannon from the Childrens Cancer Center, Holly and her boys and Rob for coming to share Mandy's special day! You guys made it so much more special. We love all ya'll!

Tomorrow no Dr appointment. Only Family Group Night at the Children's Cancer Center. Scheduling us to be there for that tomorrow night may be the only thing that saves my job as Mandy's secretary.

Love to all~

Kite Camp' 08 and more choking on coffee

Alannah, Zachary and Mandy had an absolute BLAST at Kite Camp at The Children's Cancer Center. Thanks a million times over to the awesome staff and all the volunteers at the center! You guys rock! A few pictures from the Awards dinner on the last night.

Mandy was awarded "Most Spirited Camper." I am certain this is a euphemistic way of saying "Camper with Most Volume." My girl being all, "I'd like to thank the academy..."

Zachary won "Camp Fish" They nailed my kids personalities! :-)Again with the he would rather be in water than on land, given the choice.

And finally, to follow in the footsteps of Anissa's Rorschach Pictures post. The kids tie dyed T-shirts. Mandy, being Mandy, she felt the need to embellish her shirt. God help the world if this child ever gets her hands on a Bedazzler. Sadly lacking the ultimate embellishment tool of a Bedazzler, she got herself a Sharpie and went to work. She wrote Kite Camp '08 across the back. Cute, right? Yea....this is what she put on the front. Now, I am not generally accused of being warped. Nor am I often accused of having a dirty mind, but, suffice it to say, I darn near choked on my coffee when Mandy came out sporting this on the front of her shirt. You tell me....would you have choked on your coffee too? Or would you have seen it for what it was...a thumbs down hand to go with sentiment she wrote above it.

I really gotta get that girl a Bedazzler. And hide the Sharpies. Love to all~

Friday, July 25, 2008

Dream Countdown!

There is nothing quite so cute as a 7 year old sitting on the couch reading a Frommer's travel book. She is so excited she just can't stand it and she doesn't even know the details yet! We will be flying out of Orlando on Bahama Air on Friday morning Aug 7 and staying at the Atlantis resort Fri night, Sat night and Sun night and coming home Monday evening.

Kristin with The Children's Dream Fund has just been amazing!She is Mandy's dream coordinator and we just adore her! When she gives us the itinerary and so forth, it is actually a little party. There will be cake and ballons and so forth! Her dream will be delivered at the Chic Fil A on Lumsden in Brandon next Wednesday! She is so excited!

You might want to buy some more RAM now, or think about upgrading your internet server to handle the onslaught of pictures that is sure to follow the dream presentation as well as the actual dream trip! WARNING: I am one of THOSE moms that think that just about every picture that has either the ocean or my kids in it is cute. And yea, all three of my kids on an island in the Caribbean....this does not bode well for anyone trying to put up with reading this site with dial up!
So here we sit T minus 13 days and 3 minutes to blast off. Not that we are watching the clock or anything! :-)

Love to all~

Wednesday, July 23, 2008

Downs and Ups

I was so sure Mandy wouldn't make counts(ANC)today that I packed my great big bag of everything with less everything then usual. Normally we need a small herd of pack mules to carry it all in to clinic. Today, I was playing with karma's head. Figured if I didn't come prepared, she would make counts. If I did, she wouldn't. They were so sure at clinic that when they did rounds this morning, they all but wrote today off as Mandy was coming in for a CBC, but wouldn't make counts so wouldn't be doing her usual 8-9 hour chemo day. Never under estimate Mandy's ability to come up with something the Docs didn't see coming....

We went in for a finger stick on Monday to see if she could go to Kite Camp at The Children's Cancer Center. Her counts had been in a steady downward spiral. The magic number was 500. Her ANC had to be 500 or higher to be able to attend. Her ANC? was EXACTLY 500 on Monday. Nothing like a clear cut decision. After a conversation with the Doc it was decided that she could go. She went both Monday and Tuesday and had a blast. The staff at the Center have out done themselves as always.

We went back to clinic today....for chemo, supposedly, though no one expected she would get it. Her ANC has to be at least 500 for this week of chemo. It had gone down, down, down....we fully expected it to be in toilet today...somewhere around 2-300. I didn't even carry in our less than usual, but still substantial amount of junk, because I fully expected to be told, "Thanks, but no thanks. Go home, spray everything with Lysol, including her, and come back in a week." BUT, Mandy had different plans. For once it was a time the, "Huh, didn't see that one coming" from the Docs was in our favor. Mandy's ANC was 1630! WOOHOO! So, chemo was administered and she now has two weeks off! We had a substantially smaller great big bag of everything than normal, but thankfully, she slept most of the day. One of the good things about the 8-9 hour chemo day is that she is premedicated with Benadryl, which often makes her fall asleep. That winds up being a blessing to make a very long day somewhat shorter for her. This was a huge blessing today as I had very little to keep her entertained. So she slept for several hours and then was only half awake and staring at a movie. To say she was watching it might be overstating it. The movie was on, she was looking in the general direction of the television in a Benadryl induced fog. She did great and all went well. Thank God, that she has had no more allergic reactions to the Carboplatin since we started the new pre-meds and the longer infusion.

We also got the blessing from her Doc to give the go ahead on her wish trip in two weeks!! It could certainly change at the last minute, but, right now we are awaiting final details and are very excited!! They are probably going to give her a Red Blood Cell infusion before we leave, just to be on the safe side and give her a boost. I can't wait to get the final details and watch Mandy's dream trip come true! So, watch out comes the Willis clan! We hope to leave on Aug 7(though it may not be until Aug 8) and return on Aug 10. Low counts, not withstanding, she has really been feeling pretty good recently. We are so thankful for that.

Love to all~

Sunday, July 20, 2008

Playing the numbers

Tomorrow is KITE camp at the Children's Cancer Center. This is a fun filled day camp that the Center puts on for the younger kids and their siblings. They are going to the Aquarium among other cool destinations. The Center, as I have said before, numerous times, is an amazing place. My kids love it there. To say, I love it is an odd sentence. I do. Though, I wish more than anything we didn't have a reason to go there. I wish none of the other families had a reason to go there either. I wish it had no reason to exist. But, in a world where a new drug has not been approved to treat pediatric cancer since 1958, that is a fruitless wish. So, in light of that, it is a lifeline for us. A safe place, a loving place, a place where the staff, the volunteers and the families "get it"...and I am so incredibly grateful for it's existence.

Alannah is incredibly excited that she gets to be a Junior Counselor to all the little ones at KITE camp. Zachary is jazzed because he gets to go hang and do cool stuff with cool kids. Mandy, however, is not happy tonight. She was. She was very excited. She loves the is one of her favorite places to go. And that is just one of the laundry list of cool things on the to do list for the week. However, right now, if she will be able to go is up in the air.

A few days ago, I posted about her ANC count being low and headed steadily downward. If that trend continues, she definitely can not go be out and about in the world and in all those crowded places. If that ANC dips below 500, she has basically no immune system to speak of and it is just too dangerous to let her be out in crowds and in public places like that. She has been on lockdown at home this week and that will have to continue as long as that count is low. So, she and I talked about it and I gave her a choice. She has so little control over things in her life these days that when I have the chance to let her decide something, I like to give her that opportunity.

I gave a little mini-medical school to my 7 year old. I explained what "having low counts" means. I explained that with low counts she could catch something that otherwise wouldn't give her a fever. I explained that if she got a fever with really low counts like this, it meant an automatic 3 days in the hospital. I said, that with her counts going down the way they have been I had to assume they would be below 500 by Monday and that if they were she could not participate in KITE camp. So, I said, we can do one of two things, we can go in to clinic on Monday morning for an extra finger stick test to get her blood counts and see if they were up and high enough that she could go to KITE camp. Or, we could skip the extra poke and assume they were too low and skip KITE camp. She thought about it. She made and unmade and remade the decision a few times. She is her Momma's daughter after all. She really did not want an extra poke, but really wanted to attend camp. Ultimately, she decided to go get the finger stick and see if she could go.

I have feeling I know which way the counts are going to go tomorrow and I so hope that I am wrong. I hate to disappoint her. I hate to not let her go. But, if that downward trend continues, it is simply not safe to let her go.

It is a simple let her go to day camp. But, right now, in this life that our family and so many other families facing NF and/or cancer, nothing is simple. Please send up a few prayers that her counts will enable her to go and just be a kid and have fun at KITE camp.

Love to all~

Friday, July 18, 2008

Random scenes from my oh-so-screwed-up house...

"Dork" is a term of endearment I use on my kids when they are being particularly goofy. This loving gesture is usually reserved for Zachary. He is known as king of the dorks unless of course, his Daddy is playing on Google Earth, in which case NO ONE is more of a dork than him. Mandy was dancing, shaking her groove thang with everything she had. No idea why, except that the spirit moved her to move and she did. She instructed me to applaud when she was done. I did. 'Cause I am a good Mom.
She then does this huge dramatic Broadway-esque stage bow. Being that I really am quite easily entertained, this cracked me up. I oh-so-lovingly called her a dork. Just cause that's the kind of mom I am. She laughs and says, "Zachary is more dorker than me!"

Laundry is the bane of my existence. I don't so much mind sorting it, or washing it, but really, that is where my enthusiasm ends, and really, truth be told, I don't have much enthusiasm for those parts either, but I am past the age where it is socially acceptable to do the whole toss-dirty-clothes-in-the-dryer-with-a-fabric-softener- sheet-and-then-pretend-they-are-clean thing. Don't judge me. You know you did that when you were in your late teens/early twenties too. often gets pulled out of the dryer, moved to the loveseat and left there for a while, sometimes a long while. Currently the stuff on the bottom of the loveseat pile has been there since Sunday. I like to think of it as an educational experience for my children. I am all about teaching them to be self sufficient and resourceful and to have the confidence in themselves to believe, that against all odds, they can find a pair of clean shorts in the pile. Mainly, because saying it is my own personal version of teaching them self reliance sounds so much better than yes, I really am that kind of lazy. Or, instead, they could just do this with the pile of laundry....


Ronnie to Alannah, who is sitting at kitchen table, reading a Harry Potter book for the 947 time, "Why are you reading Harry Potter again when you already have the whole darn thing completely memorized?" Alannah, "That's not true, I forgot what happened in certain paragraphs."

And lastly, we went to family group support night at the Children's Cancer Center last night. Family support group, is an amazing night that has become a huge lifeline for us. I could write a string of every positive adjective I can think of and it still wouldn't do the Center justice. It is an amazing group and a place where upstairs, when it is just the parents, it can be a no holds barred, talk about all the issues, emotions, fears, triumphs that go with facing cancer. All the families show up, gorge on some yummy food together for a while and then the kids stay downstairs to be doted on and entertained by the Center's super, amazing, fantastic volunteers while the parents all go upstairs to talk. We are in the car on the way home, this is the conversation in my car.
Mandy, "Momma, did you miss me while you were upstairs tonight?"
Me, "Of course I did, baby, but I knew you were having so much fun!"
Mandy, "You're right! I was!" And, yes, for those of you counting the exclamation points,(RONNIE) Mandy always speaks with exclamation marks!!
Zachary, "What do you guys do when you go upstairs anyway?"
Alannah, "They laugh at jokes we wouldn't get and then they cry."
Zachary, "Huh. That's weird. I think we have more fun downstairs."
She pretty much summed it up. But, that's how we roll. We laugh whenever we can, cry when we have to and then just keep going.
Love to all~

Thursday, July 17, 2008

I am SO gonna be rich!

Mandy slept until after ten this morning. She was, as always, sleeping in my bed. I woke up around 8, decided that really, being awake, was highly over rated. Zachary had slept over at a buddy's house. Alannah, come on, really? She's 14. The only way she sees any morning time is if I go in and start throwing stuff at her and pretend there is a fire alarm or that Johnny Depp is in my living room asking to take her to prom. So, given that no one else was awake, I thought I should follow their lead and went back and laid in bed with Mandy, kind of dozing on and off. She woke up finally about 10:15 and says, "Good morning Mommy. I feel great this morning! Can we go for a walk?"

"Uhhhhhhhhh, sure. That would require me actually getting dressed, but yeah, sure, we can go for a walk."

This sudden urge to have me exercise stems from the jogging stroller that was dropped off in my living room while we were at chemo yesterday, courtesy of Anissa. Mandy's neuropathy has been bothering her somewhat and this will be a good thing to have. She wanted to take it for a spin. RIGHT FREAKIN' NOW, thankyouverymuch! Mercifully, for me, I heard thunder before I took extraordinary measurements, like putting on a bra and brushing my teeth. So, sorry, baby, gotta scratch the walk right now. Mandy, being Mandy, decided there must be a work around.

If you can't bring Mandy to the walk, bring the walk to Mandy. She went and got the stroller. She pushed the stroller through the house. She ran over the dog's foot, bumped into the cat, put a loveseat in serious jeopardy and had to put on an oxygen mask to get over Mt Laundry but in the spirit of all the great adventurers and explorers who came before her, she persevered and accomplished her goal. She parked the stroller in front of the tv, in my bedroom, planted her proverbial flag and settled in for a good round of iCarly on Nickelodeon. Pretty soon she decided she wanted to watch it on the big tv in the family room. So, she put her Danimal(a yogurt drink for those not in the know about such things) in the cupholder and scaled Mt Laundry again and relocated her little piece of stroller paradise to the family room. She parked it in front of the tv. She got her Danimal back out of the cup holder. And then? THEN...she reachs into the back pocket of the stroller (where the Mommies put their purses, etc) and pulls out...the REMOTE CONTROL. Ohhhhhhhhhhhhh, nicely played my dear daughter. The force is strong with that one, I tell ya.

By the way, coffee, when it comes out your nose from laughing, hurts. Just in case you were wondering. I know this from experience.

There is sooooooooo a multi million dollar money making idea in there somewhere. I can see the ad campaign now. "The Sports Fanatic Mobile Viewing Comfort Lounger. With two handy cup holders for your beer and salsa and convenient carrying pouch for your chips and remote. Accesories such as cheerleader to chauffeur you to kitchen for refills and attached Bud Light cooler not included. And as an added special gift, if you order right now, we will through in a year of NFL Sunday ticket for only $199. Never let anyone get your chair or a better view of the tv again for the big game, just take it with you everywhere you go. The Sports Fanatic Mobile Viewing Comfort Lounger...the ulitmate in relaxation." Rich, I'm telling you, I am going to be rich! I can see the wicked demolition derby in my living room when multiple folks are vying for the best view possible. It could get really ugly, really quickly. The dog should definitely hide. I am going to need to remember to put that in the fine print..."Please use your Sports Fanatic Mobile Viewing Comfort Lounger responsibly. Always ask someone else to drive you to the kitchen if you have had too many beers. Also, use care and caution for furniture, pets and friends and family members when driving and parking your Sports Fanatic Mobile Viewing Comfort Lounger. We, at the Lazy Willis Inc., are not responsible for accidents."

Mandy does feel great today and is functioning at just about 100%. She is anxious to go to the Center for group tonight. She is loud and goofy and silly and happy. No tummy meds needed and she actually ate.

I am SO not pushing that stroller all the way from here to the Center. Not unless she lets me use one of the cupholders anyway.

Wednesday, July 16, 2008

Too tired to come up with good title

All went well today. Mandy's counts are definitely trending down. The last four weeks have one like this 2100...1940...1490...760. There is a pretty good chance that she may not make counts for chemo next week. These numbers are called her ANC(Absolute Neutrophil Count) and is a gauge of her immunity. Her cycles of chemo are 6 weeks, 4 of those she gets chemo and then two weeks to rest for count recovery and then the next 6 week cycle begins. In order to start her 6 week cycle her ANC needs to be at least 1500 on Week 1, the first week back in chemo after a break. For weeks 2,3 and 4 her ANC has to be at least 500 to get chemo. Clear as mud so far? There will be a quiz afterwards, so pay attention.
So, looking at the definite downward trend she has been showing on this cycle, it is a real possibility she won't have an ANC above 500 next week, in which case they would hold chemo and wait for her counts to rebound.

She did great with chemo again today. I am so proud of her and how she has made the transition to the new place. I really thought it would take longer than it has, especially after how rough the first day was. But, she is a trooper and has done beautifully.

The Neuro-Oncologist called me today while we were still at clinic and told me the results of presenting the case to the tumor board. It was basically what I expected. Most of the time, in most Neurofibromatosis patients the hamartomas in the brain stem and several other areas, do not cause problems. I really hope that is true for her. However, Mandy has always been all about the "unusual presentation." Back in 2005, hamartomas on her cerebellum that should not have been symptomatic, were VERY symptomatic. So, that said, it kind of leaves us with they SHOULDN'T do anything, but in her case they could, just due to past history. They also agreed that the optic gliomas were stable from the scan in March to the scan in June. She will be due for another scan in September. So, nothing horrible, but nothing new either out of that. All the additional bloodwork came back. She is growth hormone deficient, which is no surprise at all. We couldn't treat for that even if we wanted to because obviously she has things that we don't want to grow. We have known this one for a while. No sign of precocious puberty, which is good. Thyroid was off a bit, but it seems that is only an anomaly to her and nothing to be concerned about.

The premedicating and longer infusion have handled the allergic reaction to the Carboplatin(one of her chemo drugs) very well. She has had no other issues, thank God!

We will have to make some decisions about the Atlantis trip after we see what her counts are like next week. It is not a good idea, or safe, to take her if her counts are bottomed out like that. We were told to kind of play it close to the vest this week and assume the counts are continuing to head down. So, no busy places(malls, playplaces, etc) and lots of diligent handwashing etc.

So, another on in the bag. Hopefully, she can swing those counts back up the other direction next week.

Thanks for checking on her!

Love to all~

Saturday, July 12, 2008

Boooring...gotta love it

Not much to report on a medical front today. Mandy was feeling good. She had a friend over for a while this afternoon and they painted their nails and went swimming and played Barbies. She has a bit of a rash from the band aid again, so no more band aids for her. How you can manage to develop an allergic reaction to a band aid is beyond me, but leave it to Mandy. She is all about making sure she comes up with new and different things the Dr's haven't seen before. She did request a Benadryl when she was trying to go to sleep as the itching was driving her batty.

Alannah is home from camp and had a great time, though she was ready to come home. Her concert was last night and it was FABULOUS! It was so funny, having a Daddy who plays guitar, as any guitar player knows, there is one song that you must learn. It is the FIRST song you must learn, and when you go into the music store to try on guitars, (cause you think if you wear a guitar you will get lots of chicks,not that Ronnie did this, mind you) you need to know this song. It is a incredibly easy guitar lick, but still makes you look like you know things(at least to people who don't know things, such as myself). So, you can turn your little Marshall amp up just as loud as it will go, strap on your Telecaster and belt it out. You are sure to get he attention of any potential groupies hanging out in the store. I have been in the guitar store, trust me, there are groupie wannabes there every day. Name that tune? It's "Smoke on the Water" by Deep Purple. If you play it loud enough and wear your guitar just right, you might be able to snare yourself your very own groupie. Por Ronnie, he never got a groupie, all he got was me. He so got jipped. So, Alannah is well acquainted with the song, kind of a long standing inside joke in our house. So you can imagine how giddy she and her Daddy were when the orchestra played "Smoke on the Water" at the concert. The look on her face was priceless. She was all serious viola player with this big, goofy, about to crack up look on her face. It was absolutely hysterical!

We did a whole lotta nothing today. Hung out, went to Wal-Mart for a few groceries, made dinner and ate all five of us at the same table(novel concept lately) and played a little ROCKBAND. Again, you ain't seen funny until you have seen my husband try to rap along with Faith No More. That man doesn't even the soul my shoes do. But, by golly he has the passion to scream it at the top of his lungs. We are gonna get us a VW bus, hang some beads in the window and go out on the road. We can totally kick the snot out of the Partridge Family. By the way, in case you were wondering, I suck at Guitar. Doubt I could even pull off "Smoke on the Water." No groupies for me. Mandy and I did a killer duet of Bon Jovi though! That's my girl.

Our daily dose of cancer in your face today comes to you courtesy of Jonas Salk. Mandy was talking about how they needed to come up with a shot to make you not get cancer, or a pill you can take if you do, that cures it "in a day, a week or even a whole month, cause that's a lot less than I have to take medicine for." She was bemoaning that the Dr's would never come up with such a miracle drug. Ronnie explained to her how polio used to run rampant and now it is virtually extinct because someone invented a vaccine for it. Her words, "Well, what's the hold up? Why can't they do that for cancer?" I guarantee if I sat that girl in the lab and had her telling them to hurry the heck up every 2.3 seconds, at the top of her lungs, they would figure something out pretty darn quick. Cause her? At the top of her lungs? You can turn your little Marshall amp up just as loud as it will go, and it doesn't stand a chance against her volume capabilities. Wonder if we could get Mandy some groupies? They could come to chemo with her and hold up their lighters and sway to the soundtrack of her Nintendo DS game. Not to mention they could go get lunch for us! That would ROCK!

Tomorrow the task list awaits...lawn mowing, housecleaning, laundry doing, blahblahblah. But today we just had fun being the five of us.

Hope you had a good ordinary day too!

Love to all~

Thursday, July 10, 2008

Home sweet home (or not)

Tomorrow all my peeps will be coming back to the nest. Ronnie will be in town, very briefly, from Friday afternoon until Sunday evening. We will be picking Alannah up from camp tomorrow night. I will be happy to have them all home!

Mandy did pretty well today for a post chemo day. She is just so tired. I had to wake her up this morning at 9:45 to take her to her neurologist appointment. I suspect she had a good other hour of sleep in her when I so rudely woke her. All was fine at the neurologist office. He and I talked a lot about prognosis etc. Nothing new to report there, really. She then slept from 2-7pm and then was back in bed at 9:30. She was in a pretty good mood when she was awake. We went for a short walk tonight and she really struggled with making it very far. She was tired quickly and winded and her legs hurt. The leg pain is a product of the neuropathy(nerve damage) and the Vincristine side effect. It is so hard to see her just not be able to do what she wants to do.

She ate no breakfast at all. I was thrilled as she ate some pizza for lunch. All she wanted for dinner was a little bit of Captain Crunch and she ate a total of about 6 pieces.

Speaking of normal things that aren't anymore. We had set her up last year for dual enrollment at school, meaning part of the time she would be at school and part of the time she would be at home with a teacher coming here. The original plan was she would go Mon- Wed, and then a teacher would come to the house Thur and Fri. Since her change in treatment days and the fatigue the chemo is causing she will only be in school Mon and Tues next year. I called to talk to the school district about this change today only to be told that her IEP and 540 had been CANCELED. After I swallowed a whole host of 4 letter words, I asked why it had been canceled. Seems no one knows the answer to that. The IEP and 540 are the plans that allow the special accommodations and teacher coming to the house. Frankly, I was proud that I maintained my cool. I had a CHAT with someone there and have a message pending for the administrator of the program. I hope to hear from her tomorrow. My hope with getting this done last year was that we would be able to hit the ground running this year and have it in place from the getgo. No one else seemed to get the memo about my plan. This, um, shall we say, irritated me, just a smidgen. In order to get his in place you have to fill out a small pile of paperwork and then get teacher, administrators, district reps and parents in one room for a meeting with the small pile of paperwork, some of which has to be signed by the social worker at the hospital. SO, it is a lot of leg work to get all that paperwork and all those people in one room at one time. And frankly, I already did that. So it takes an act of Congress to put the plan in place but apparently a flippin' typo can cancel it. I am told we will have to start all over with the people and the paperwork. From square one, which means all that from last year was a complete waste of time. I don't have time to waste. I mean if I did, I would do my laundry, for crying out loud. Obviously, I haven't done that so I must not have much free time on my hands.

Now, it's possible I am just in a bad mood. In case you hadn't caught on to that yet. (But, come on.. it was CANCELED! I still think I get extra credit for NOT saying what I wanted to say) That said, I suspect even if I was feeling all Susie Sunshine and in a great mood that still would have ticked me off to no end.

I am feeling some stress lately. And this? This was just one more thing on my ever growing and never, ever shrinking list of things to do. I think it is just that time and it is all adding up. Ronnie has been swamped at work. And work for him is almost always somewhere other than the confines of the Sunshine State of Florida. This week found him in Canada again all week. I would love to find time to just go out on a date with him. Honestly, even when we do manage to find a few minutes alone, the conversation revolves around dr's and bloodcounts and worry how the kids are coping. I had to apologize to him the other day for basically being wretched. Frankly, I am surprised he wants to come home!

I spend so much time and energy making sure that the kids are okay, and going through each day pretending all is some semblance of right with the world for their sake, I just don't have much left at the end of the day. I am trying to make huge decisions about school for Mandy and Zachary next year and what school to send them to. Since I won't be working at the school again next year, there is a part of me that wants to put them back in their neighborhood school, instead of the magnet school they are in now. They only went to the magnet school for part of the year last year, so to go back to the neighborhood school would not be a disruptive change to them. I have after school care issues with Zachary on Wednesdays at the neighborhood school that I don't have at the magnet school. I just don't know and can't seem to figure out the right answer. I am stressed about money and bills. I am stressed worrying that I don't make this as easy on the kids as it possibly could be. I try, but I worry I don't succeed. I am stressed I am not as good at helping to ease Ronnie's mind as I should be. I am stressed about the laundry that never gets done. I am stressed about my house that never gets cleaned completely. I am stressed that poor Zachary seems to always get shuffled off somewhere, not that he doesn't love hanging with his buds, he truly does and would so much rather be there building Lego Metropolis than any of the fun filled appointments Mandy has. I just don't want him to feel cast aside either. I am stressed worrying in general. I am just stressed. I think I am just tired.

The upside is the kids all seem to be acclimating to the new abnormal normal and doing as well as could possibly be expected of them. Mandy seems to be less sad than in recent weeks, which makes me so happy. Zachary is smiling and joking his way through, as is typical. I think the two week break at camp has been a great thing for Alannah.

If I have said it once, I have said it a million times, this is a marathon, not a sprint and I guess i have just reached that point where a marathon runner would say they have hit the wall. I will keep running through the wall and will be fine. But, man, I sure need someone to hand me a Gatorade from the sidelines. Plus, I think chucking that paper cup with a little bit of anger behind it might make me feel better too.

Love to all~

Wednesday, July 9, 2008


It's official. We really, really like our new hospital. We were back in the Tampa office of All Children's this week, instead of the St Pete office we were in last week. This is the scene of the initial complete and utter meltdown the first week we switched. I was worried about going back and switching locations again(in her mind at least). She was GREAT! I was so proud of her. She was brave and happy and cooperative. She did a fantastic job and I think it is safe to say we are officially over the hump.

We had our first meeting with the Neuro-Oncologist. She seemed great. She had not yet seen Mandy's MRI's. But, we talked about everything and she seemed to know not only brain tumors in general, but also Neuro-fibromatosis. So, I was impressed and feel really positive about the decision we made to move. She will be presenting Mandy's case to the tumor board. This is a concept I have always loved for my "unusual presentation" brain tumor child. Tumor board is when basically everyone, who is anyone in relation to the care and understanding of tumors sits down at one table and talks about each patient. It consists of neurologists, neuro-oncologist, neuro-surgeon, radiologist and oncologist. I expect it will take a while for the practice to get a handle on Mandy's case as it is so out of the usual for NF kids. But, right now, I have a lot of faith in them and feel good about it.

Mandy did beautifully today at chemo. Her blood counts were good. She was so bored by the end of it all. She was hooked up and being treated from 9:30-6:00. There were no allergic reactions again this week so the premedicating and slower infusion seem to be doing exactly what we hoped they would do. Thank God!

Just to give you an idea of the timeline...
1) Triage from nurse(vitals etc)10 minutes
2) Dr exam time depends on how many of my 9.3 million questions I torment them with that day
3) Access her port time depends on what number Mandy picks to count to before the nurse can use the needle
4) Flush port with Heparin(anti clotting drug) and draw blood for all bloodwork
5)Run in 20mg Benadryl(antihistamine to combat allergy to Chemo drug) about 15 minutes
6) Run in 40 of Hydrocortisone(steroid to combat allergy also)about 20 minutes
7) Run in Zofran(anti nausea) about 15 minutes
8) Run in Vincristine (first chemo drug) about 10 minutes
9) Run in Carboplatin (second chemo drug) 3 hours
10)Run in Saline (post chemo hydration) 2-3 hours
11)De-access port about 10 minutes
Finally done. And for the most part she is sitting in the same chair in the infusion room with basically movie watching, nintendo playing, coloring, reading or other stationary activities. Not hard to understand why she is bored out of her gourd by the time it is all said and done.

We got exciting news and have the official travel dates for Mandy's dream trip! She will be going to Atlantis from Aug 8-10! She is even going to take the other four of us with her. How about that!? She is so excited!
I don't have any other information yet, but will soon.

I am sooooo stupid tired tonight. I can't even see tired from where I sit. Merely just being tired would be a huge improvement. So I am off to bed.

Gotta be up early to head of to Mandy's neurologist appointment. My kid LOVES her neurologist!! He is the only Dr that gets this conversation.
"Hey Mandy , you have an appointment with Dr Foradada tomorrow."
She is genuinely excited to go see him. Hopefully she won't be too sick tonight and tomorrow.

Thanks for checking on her. Love to all~

Sunday, July 6, 2008

Whew, what a whirlwind weekend

Mrs Baird, my high school Honors English teacher would be so proud of my use of alliteration in the title. Nice to know I didn't sleep through the WHOLE class.

This weekend was indeed a whirlwind. Friday we got to be in the Brandon July 4th parade, courtesy of our friend Rob of Dynamic Painting. When he asked if Mandy and Zachary would like to ride in the back of his Dynamic truck and chuck beads at parade goers, they didn't have to ponder their answer too long! We had to work through a few in Mandy was just all about throwing beads. If people were there, great. If people weren't....whatever.Their loss. Her job was to throw bead and by cracky, she was throwing the darn beads. It was all about the delivery, baby.

Zachary had a great time and got to wave to lots of his buddies from the truck. Thanks, Rob for giving them such a great 4th!!

We came home and Mandy rested for a little bit. She was pretty incredibly wiped out after the parade. Zachary is all about being a man these days. Ronnie needed to mow the yard....needed as in I had an ulterior motive to be revealed in a second AND needed as in we were about to become a federally protected wildlife refuge if he didn't. Given that the only wildlife I really want in my backyard is my kids and dog, we opted for mowing. And there is that whole ulterior motive thing too. So, Ronnie has decided now that Mandy can get his remote, Alannah can cook dinner and Zachary can do this:

his life is complete.

After that we headed out to pick Alannah up from camp for her birthday dinner. Thanks to the Children's Cancer Center, we were able to give Alannah a birthday gift that made her make this face in shock and joy and disbelief.

That, my friends, is the face you get when you give a 14 year old girl a laptop to call her own!! The Center gets refurbished, used laptops that they give to the families. Mary Ann, the director, was kind enough to give us one to give to Alannah and as you can see, the reaction was shock and awe! LOVE IT! Thanks so much to the Center for bringing that kind of smile to her face!

We took her and two of her best friends, Tara and Jordan out to dinner at Chili's for her birthday. She is having a great time at camp and it was great to see her. I just love the kids she choses to surround herself with. Tara and Jordan are great kids and it was fun to watch the three of them chat during dinner. We took them all back to camp and headed home. We watched the fireworks for a little while from the backyard and then shuffled the kids off to bed.

The next day brought Saturday and Ronnie's 40th birthday. Which, for anyone keeping track, is SIGNIFICANTLY older than me! This is where my ulterior motive for the lawn mowing thing come into play. I had every intention of throwing a little surprise gathering for him to celebrate. However, the surprise kind of went by the wayside, when I couldn't figure out how to kick him out of the house for the whole day. I figure he might have gotten a tad bit suspicious if I returned from the store with a case of beer when he was leaving the next day for a week in Canada. So, I rolled on the surprise and did a great reveal a little bit early and coupled the "Surprise!" with a "Time for a cleaning frenzy!" Poor guy. Nothing says happy birthday like having me bark cleaning orders at you.

We had a great small group of close friends come for Mexican food, drinks and some fun. The "fun" came in the form a big box labeled ROCKBAND. Trust me, you don't know fun until you have seen grown men and women sing, play the drums and play guitar to a bunch of rock songs. It was a HOOT!!

Notice the concentration in the faces of the "band!" Also, just as an fyi, girl bands ROCK! We knocked Bon Jovi, "Wanted Dead or Alive" out of the park! Though, no one could even come close to comparing with Ted's drum skills. He's got mad skills, baby, mad skills. Ronnie rocked on the guitar. Lessons learned from the evening. We have GREAT friends and love each and everyone of them! Also, just because you have a few glasses of Sangria, it doesn't mean you are now suddenly the best singer that American Idol has yet to find. I know, I know, sad but true. Thanks so much everybody for making Ronnie feel the love from you all on his milestone birthday! Honey, I love you and hope even though the surprise wasn't so, um, surprising, that you had a great time anyway! Happy birthday!!!

Mandy did okay with all the hustle and bustle this weekend. She was feeling pretty crummy on Thursday, post chemo. It was hard to get a big enough window of time to get some Ativan in her to stop the vomiting. I finally did and it was a huge help. It is so tough to see her feel that way on days like that. It just breaks my heart. She literally can not even hold her head up out of the basin she is getting sick into. I have to hold her head up for her. She is back to sleeping a lot, about 14 hours a day. The first week back on chemo is always tough. Her counts were lower this week so that is contributing to the fatigue. She is complaining that her eye hurts lately. So that is something we will definitely talk to the Docs about this week. Mandy has a marathon chemo day on Wednesday(about 6-8 hours) as well as our first meeting with the neuro-oncologist and then an appointment with her neurologist on Thursday. So, lots and lots of hospital/doctors office time this week.

A sad and interesting conversation with Mandy and Zachary today after as we were leaving Alannah's camp. She is at a college campus that was designed primarily by Frank Lloyd Wright back in the 1920's. Apparently, there is a maze of underground tunnels that go all over the campus. They have been sealed off due to asbestos insulation. Alannah was telling Zachary about these tunnels, he was of course fascinated and wanted a tour, right NOW! Alannah was explaining the carcinogen concerns of asbestos and how they don't let you down there because asbestos can cause cancer. Mandy was listening quietly to this conversation. She sighs sadly and says, "Well, I guess it doesn't matter if I go down there because I already have cancer." It broke my heart. She was just so sad and resigned when she said it.

So, that was our wild weekend. Thanks to all of you who helped make it a wild, whirlwind weekend! See, there it is again, Mrs Baird. I may have slept through the lecture on how "Lord of the Flies" was actually a political commentary, but by golly, I learned the literary terms.

Hope everyone had a great 4th!
Love to all~

Thursday, July 3, 2008

Happy 14th Birthday Alannah!!

"No, you can't yet. You have to wait for the Doctor."
Ok, so really I can't type my response to that, because this is, after all a family show. Anyone out there who has given birth knows that saying no you can't push when it is about 10 minutes past when you really wanted to start pushing is like saying to
my husband "Don't channel surf during commercials." Somethings you just can't help. Gee, okay. Suffice it to say, the fact that apparently my Ob/Gyn was enjoying his 4th of July festivities and was taking his own sweet time showing up at the freaking hospital did not make me overwhelmed with joy. That whole brief thought I had of natural childbirth. Yea, bad idea. Cause ya know what? IT REALLY FREAKIN HURTS!

In an even more cruel twist of fate, no anesthesiologist shows up in my room, with his bag of happy drugs. Ever. He never came. Well he did, eventually, but was so a day late and a dollar short I can't even tell you. I so wanted happy drugs. I wanted happy drugs more than I wanted air at that moment. But, nooooooooo, Dr. (I Went to school for 10 years, have $120k worth of student loans to show for it and I hold all the happy drugs) Feelgood apparently didn't believe that a first time Mom could be progressing so quickly. To prove him wrong, I think I could have shot that baby out at him like a bazooka and given him a concussion from the fall onto the hard hospital floor. That is if he had ever bothered to show up. Which he didn't.

Now, little did I know at this point that I delivered babies like a human Pez dispenser. I know, I know all of you who take 3 days to deliver a baby have no sympathy for my super fast labor plight. Trust me though, it ain't all it's cracked up to be. Super fast labor + super hard contractions+no time for Dr Feelgood to show up=super big ouch. So, a mere 2 hours and several ear piercing screams(ear piercing, as in the nurse told me to stop screaming because I was scaring the other patients. Really?? Gee, I'm sorry, but they should be scared. This hospital has no anesthesiologist!!)and two really rude yanks with a set of forceps she was here. She took her sweet time breathing. It was an incredibly long first minute of her life. She came around, but I only got to see her for a second before she was whisked off to NICU. Shortly after that Dr Feelgood shows up with his happy bag of yummy goodness. Yea, no one has seen him since, except on the back of a milk carton. I did it all by myself, Dr Feelgood. THANKYOUVERYMUCH! I am woman, hear me roar! I don't need your stinkin' drugs. Note to self, natural childbirth sucks, send Dr Feelgood a nice fruit basket and hope he shows up should you decide to have kid number two. Which by the way, he didn't when kid number two arrived, but that is another birthday post.

I threw a fit of epic proportions about an hour later when they still would not bring her to me or let me go see her. Something about my head spinning around and green stuff spewing out of my mouth ala "The Exorcist" prompted them to reconsider not letting me go see her. That whole Mama Bear, don't get between me and my cub, kicks in immediately.

She was the most beautiful thing I had ever seen. I was stunned at her existence. I was looking at MY DAUGHTER. WOW. Now, truth be told...she was one ugly newborn. She had a head that was all set for an audition for the Coneheads, a black eye and an ear bent in a funny direction. At the time, I had absolutely no idea that she looked like she had lost a round or 7 with Ali. She was the most beautiful thing ever. EVER.

She was released within another few hours from NICU and all was well. I held her and wouldn't let go. I stared at her lovely little face with the most awe and wonder I had ever experienced. Ten beautiful fingers, long piano playing ones, like her Mom. Ten of the cutest toes attached to two of the cutest baby feet ever to grace the planet Earth. Amazing.

My first born child was the easiest child on the face of the planet. She slept through the night at 5 weeks old. Now, because I was a first time Mom, I like the uber idiot that I was, felt the need to wake her up to verify all was well. I did this until my pediatrician took me out back and smacked me upside my sleep deprived little head and said in no uncertain terms...."NEVER EVER WAKE A SLEEPING BABY, YOU DORK." Woops, um, ok. Won't do that again. Sorry. DUH

She nursed easily, gained weight like a supermodel at a Burger King and was of course the smartest kid ever.

She never had colic and other than a really ugly bout of not wanting to go to sleep, like ever, when she was about 2, she was a dream baby. Now in all fairness, she could shoot spit up across a room and get a good 20' of distance to find the person with the nicest, most expensive and most neatly pressed shirt in the room. Mercifully, this was almost never me. She had an uncanny ability to fill the nastiest diapers the minute we got on a plane. Thank goodness, this was before the days of air marshalls or we so would have been kicked of the plane for carrying on environmental weapons. She read crazy early and finished the Little House series on her own the summer before she started kindergarten. She potty trained relatively easily. She's a klutz of epic proportions and a geek to go with it. She has a heart of gold and has been old since the day she was born.

Today she is 14. FOURTEEN. I have no idea how that happened. She is a marvelous young woman. I am so incredibly proud to call her my daughter.

She has a mind of her own, this young woman who is now my daughter. She has a black and white definition of right and wrong. She wants to save the world and all of the children in it, especially those who have special needs or circumstances. My love affair with this amazing creature began 14 years ago and has only increased over time. She got her daddy's brain and writing ability. She is so his child, it is not even funny. To either one of them, the "Great Missing Nintendo DS Mystery of 2008" could just be any given Tuesday. As is common with crazy smart people, she is also a flake of epic proportions.

I wish I could take credit for it and say she is the amazing kid she is today because I am the best mother ever to punch out an anesthesiologist. I can't take though. She came out this way.

Baby, the apron strings have to get longer and longer the older you get, but rest assured my heart strings hold you just as tight as the day you and the fireworks celebrated yours and America's birthday back in 1994. Thank you for being my baby girl, no matter how old you get. Thank you for the fact that even at 14 you still don't get offended when I call you "bear" even in front of your friends. Thank you for crying with me at just the right spot in "Steel Magnolias." Thank you for trusting me and thinking I still have answers. For the gift that is my oldest daughter, Alannah Louise, I say thank you every single day. I love you, bear. Happy Birthday!

Wednesday, July 2, 2008

It's all good

I could not have asked for more. I was so nervous about how Mandy would handle the new clinic again. She went for a finger stick only a week ago and was a mess. We talked a whole lot about how some things might looks different(remember the melt down over the different finger stick needle a few months ago?)but that even if they looked differnt they would feel the same. She stepped right up and did GREAT!

It started on a good note. At our previous clinic, she had to do a finger stick and then have her port accessed. Mandy was THRILLED to find out she had no finger stick here!! SCORE!! That was a great way to get the ball rolling. She reports though the port access needle looked different that it hurt less. Well alrighty, then.

We premedicated with Benadryl and Hydrocortisone and had no allergic reaction. Woohoo!!! The steroid kicked in and the hunger followed. She single handedly filled the trash can in the infusion room. It looked like remains of a Frat party minus the beer cans. She ate her way through a full bag of apple dippers and a few chicken nuggets from McDonalds. Then she moved on...she ate three packs of M&M's, a small can of Pringles, a granola bar, a Pixie Stick, a bag of Cheez Its and a bag of animal crackers. I swear it was more than she has eaten since she started treatment, TOTAL! Not exactly healthy cravings, but at this point anything that gets calories in her makes me happy! She reminded me of the kids book, "The Very Hungry Caterpillar."

Jamie and Kyleen came from the Children's Cancer Center to say hello and drop off something. How incredibly awesome are they?! Mandy was happy to see them and immediately asked them to accompany her to the vending machine to replenish her supply of food. Poor ladies didn't know what they were getting into! We were walking back to the infusion room and Kyleen looks at me and says, "Have a few steroids today did we?" Uh, yea. Apparently. Honestly, she has lost 10% of her body weight since starting treatment, I was thrilled to see her eating that much of anything!

So, a roaring success. She was so brave and very herself. She worked through her nerves with a smile and a fist full of junk food. No allergic reaction, which is FABULOUS! It was a tremendously long day. We were at clinic from 9 am till 6 pm, but I could not have asked more from her. It was a tough day and she came through it with flying colors. All chemo days will be like that from now on, long days. The nurses were all great with her and Mandy really liked her nurse today, Sonya. She was a doll and could not have been better with Mandy's anxiety and put her at ease easily. We get to meet the neuro-oncologist next week.

So, there ya go. I get all worked up and it all went as smoothly as I could've dared hope for.

Thanks to all for the good wishes and thoughts and prayers for a nonallergic, smooth, easy transition day today! You guys rock!

Love to all~