Monday, March 30, 2009

HAPPY 10TH BIRTHDAY, ZACHARY


My little man is 10 years old today. Double digits. How about that?? Zachary, I love you buddy. You can make me laugh like no other. You make me proud every single day to be your Mom. You are truly a blessing and I love you more than words can say!

Love to all~

Sunday, March 29, 2009

Enough already with the drama

Alrighty, it has been a long day(week, actually), so I am going to break this down and not even pretend to write with any eloquence whatsoever.

I am writing this update from a very comfy bed, tho not mine, in a very beautiful house, which is equally not mine. I wish I could say we were on vacation visiting friends or in some swanky hotel, but, not so much. I woke up this morning to discover that the carpet in our master bedroom made an odd squishing noise and had the added bonus of water springing up between your toes when you walked. Very beach like. Without the whole relaxing ocean sounds though. It would appear that we have had some sort of breach(slab or roof, not entirely sure yet) and that the rain in our house did not stay mostly in the plains of Spain, or even outside for that matter. Nope, it came in. Apparently has been doing so, unnoticed for quite some time. It has left mold as it's calling card.

So, we are at a super wonderful friends house about 10 minutes away. When the water removal guys came, they discovered the mold. Mold in your house under perfectly normal healthy circumstances can be really bad. When you have an immune compromised kid, well, it is potentially catastrophic.

SO, for an as yet undetermined time we are guests of a wonderful friend of ours. It could conceivably be quite some time before we are able to return home. Walls will be coming down, flooring coming up, disinfectants going in and mold coming out....all sorts of fun.

I will be calling Mandy's docs in the AM to see if we should do a chest CT to see if she has any inhaled spores. Just as a precaution, she is fine from all outward appearances. As long as she is okay, the rest....whatever. It's just a house. We will figure it out.

There was some other drama sprinkled in this week too. Suffice it to say, I am ready to start a new week.

Off to bed now.

Love to all~

Wednesday, March 18, 2009

Can we get back to you on this one later?

Have you ever showed up at a party and realized you forgot the hostess gift? I haven't done that one. But I have been mid-dinner party and realized I forgot to make a dessert. Whoops! My bad. And I can't even count the times that I showed up in class having forgotten my essay, research paper or pencil. No matter the faux pas, they all share the same general feeling ... people were expecting/hoping for something and you were going to drop the ball.

That's how I feel typing this post for you. I know you are hoping for/expecting more than I am going to have to offer you. I'm sorry.

I got the call this afternoon from Mandy's neuro-oncologist that the tumor board had met and discussed her case this morning.

The good news first:
  • The optic glioma, the reason she started chemo to begin with, is stable.
  • We aren't changing the plan right now.
  • The new additional enhancement on the parietal lobe lesion could be a technical anomaly. It could also be an NF-related lesion, but that one looks less likely overall.

    The less than ideal news:
  • There are characteristics of the 6mm lesion in the left parietal lobe that are consistent with a glioma ... shape, location, enhancement. What makes this concerning is that this area appeared while she was on treatment and if it continues to progress at all, with added size or enhancement, we will need to switch protocols to a much more aggressive one. Radiation is out and surgery in that area would require "a lot of digging." So, if it there is any further progression, we ramp up the chemo significantly.

    So, we wait for scans and for time to tell us better what exactly we are dealing with and how best to fight it.

    Chemo today went well. Counts were good and she was in good spirits tonight.

    Love to all~
  • Tuesday, March 17, 2009

    I freakin' LOVE the Irish!

    I clung to my phone like a middle school girl without a date to the school dance yesterday. All day long. Even did the whole, "Are we sure this thing is on?" thing. Alas, I had the metaphorical dress, I had the metaphorical shoes, I even had the cute metaphorical updo picked out of Seventeen magazine for my hair, but no phone call ever came.

    I didn't need a date. I needed Mandy's EEG results.

    I got nothin'.

    Well, crap. Eventually, I took an Advil PM and went to bed. Didn't sleep terribly well.

    Woke up this morning. Did bouncy happy Mommy dance into kids rooms screeching, "Happy St Patty's Day" like a leprechaun strung out on meth. Kids look at me like I have lost my damn mind. Probably have.

    Do the morning routine. No kids fighting, no unfortunate incidents with cereal or peanut butter. Nice, I think.

    Kids actually ready on time. Wow, this is going well so far, I think.

    Get kids to school. On time. Wow. Impressive, I think.

    I decide, this was a good morning. I deserve a Starbucks, because we rocked this morning and cause frankly? I haven't slept well in about a week.

    As I am headed back to this side of town from school, this uncheerful little light comes on, accompanied by a slightly more cheerful little "ding."



    Well, crap. That can't be good. So, I dig through the glovebox for the owners manual that I have never bothered to read. Flip through looking for Chapter 3, entitled "What the heck does this light on my dashboard mean?"

    Find it. Says basically, "Ignore it. You probably got low quality gas." Well, alrighty then. Laugh to myself because I know I am going to have to admit to husband that I got gas from the place he always tells me not to get gas from because it is bad gas and he will have to do the, "See??? I told you so" dance.

    Picture husband dancing little jig.

    Laugh some more.

    Go about 4 miles out of my way to Starbucks with a drive through, because though I did brush my teeth, I may or may not have yet put on deodorant and certainly haven't showered. And there is a slim possibility I picked the scrubs pants up off the mountain of dirty laundry in my closet. Not saying I did. Just saying it is possible.

    No one needs to see that. Order my triple shot Venti nonfat, no whip, extra hot mocha from cheery sounding lady on speaker in drive thru. Get up to window to pay. Perky Starbucks lady says, "We accidentally made two of your mochas. Would you like the other one? It's on the house." Pfft. Would a kid like another lollipop? Does a bear poop in the woods? She might as well have asked me, "Would you like a massage and a pedicure with your mocha this morning? Or perhaps a winning lottery ticket?" Oh, heck yea, baby. Bring it!!

    Cause this? Is a beautiful site first thing in the morning.



    I drive away thinking, maybe my green scrubs are in fact lucky for this St Patty's Day. Practically dislocate my shoulder trying to pat myself on the back for being too lazy to find actual clothes, wait, I mean... having the obvious superior intelligence to wear them.

    Literally, not even out of the parking lot of Starbucks when my phone rings. I look down at caller ID. "Unknown Name." In my world, this ALWAYS means it is a doctors office.

    I take a sharp breath in. I say a wordless prayer. So much can change with this phone call.

    Pleasepleasepleasepleaseplease....."Hello?"

    Now, Mandy's neurologist is a wonderful guy and we adore him. He has treated her for years and is acutely aware of the complexities of her medical life and of the depths of my crazy. He knows this is a time sensitive result and that the tumor board docs would really like to have the results before they meet on Wednesday. Furthermore, he also knows I lose my mind a little more with every second I have to wait for results.

    That said, never in darn near 6 years has he called me in the morning. Ever. It is always after office hours.

    "Natalie?"

    Pleasepleasepleaseplease...

    "Hey, Doc, how are you?"

    Pleasepleaseplease...

    "Hey, I'm good. Natalie, listen, I have Mandy's EEG results. You can breathe again. It is all normal. Perfectly. Completely. NORMAL."

    THANKYOUTHANKYOUTHANKYOUTHANKYOU

    I gush and say thank you for getting back to me so quickly. He says all his sweet, good doctor things and says to let him know what tumor board says. I gush some more. We talk for another minute, then say our goodbyes.

    THANKYOUTHANKYOUTHANKYOUTHANKYOU


    I breathe. I pick up my first of two mochas and drive home.

    The luck of the Irish? Oh, yea. We got it today! Thanks for all the prayers and love you all sent this week. As always, y'all have our backs and that means more than I can begin to say.

    Happy St Patrick's Day!

    Love to all~

    Monday, March 16, 2009

    Before and after

    BEFORE




    DURING



    AFTER



    It has been a long 4 years, but behold, Alannah's wire free teeth!!! Ain't she purdy??!!

    Love to all~

    Sunday, March 15, 2009

    Stir crazy

    Being locked in a house all weekend long, when Spring has hit full force outside is enough to make you a little crazy. Alannah and Zachary had invites from sweet friends to hang out this weekend. Mandy was about fried by Sunday night and officially lost her cookies to full blown stir craziness. Alannah felt bad for her and was trying to keep her entertained this evening. Thus, was borne the Willis Doll Fashion Show with your hostess, Alannah Willis, camera man Zachary Willis and principle model and head designer and stylist Mandy Willis. Enjoy the show! (Note to those of you who get the email update, you may have to log onto the site to view it) video

    Tomorrow it all comes off....Mandy's EEG leads and Alannah's braces!

    Love to all~

    Friday, March 13, 2009

    Distract 'em with pictures

    You might remember, this. A few weeks ago Mandy was treated like an absolute princess at the Day of Pampering when she got to pick her ensemble for the Pediatric Cancer Foundation Fashion Funds the Cure fashion show.

    Well ,Tuesday night was THE night! And as cute as some of the pictures I posted from that day were. Just wait. There's more! They played a wonderful video from that day at the show last night. You can see it here. Make sure you have your volume on. Oh, and a tissue or two might be good too.

    After much anticipation, we arrived at the show. FINALLY. I am told I drove "extra slow" that day.

    First stop, just like for any model, was hair and makeup.



    Then on to wardrobe to change into her chosen dress. And as any good model knows, the accessories make the outfit, so, she was sporting a Juicy Couture handbag and hat and RayBan shades.

    She and Alannah hit the runway early so Mandy could learn how to work it. Can I just say I was more than a little concerned at how well Alannah could do a runway walk. She needs to never, EVER walk like that again. Mandy was not quite so comfortable initially, but took some Hip Swinging 101 from her big sister.



    The shows was hosted by none other than this guy.



    Oh yea...that would be Carson Kressley, from one of my all time favorite shows, "Queer Eye for the Straight Guy." Love him!!

    She worked the runway in style flanked by two ridiculously good looking Tampa Bay Bucs, Will Allen and Quincy Black.





    By FAR, the most amazing picture of the night was the one taken by the amazing photographer, Pepito. It took my breath away.



    It was an amazing night, filled with amazing girls who were absolutely beautiful in every possible way. Thank you to PCF for including Mandy in this event. And the best news of all, is that the night raised $315k for research and funding of clinical trials!!

    Wednesday, of course, brought chemo. Tumor Board had not yet met, so no new information there. Counts were good and all went well.

    The 72 hour long EEG started this morning, with a trip to the neurologist office to get 18 electrodes glued to her head and then wrapped in a big bandaid. She carries around a battery pack and sleeps under the watchful eye of a video camera and monitoring system. All in all, a pretty uncomfortable get up. And though she has certainly let us know, that she thinks this whole thing is a bad idea, she played cards with Alannah and Zachary tonight and had a ball.





    The results of this EEG are a very important piece of the puzzle for tumor board, so we are more than a little anxious to see what this reveals.

    Love to all~

    Monday, March 9, 2009

    Unsettling Developments

    When I was a little girl, I was not terribly worried about the monster under the bed. Really. In all honesty, I was certainly not above invoking the "there's a monster under my bed" defense to explain why I was sneaking out of bed for the eleventy bazillionth time.

    But the worst monster ... HE was in the closet. That one was so hideous it could only come out under the dark cover of night. That one scared me to the point of bedwet ... well, that's TMI. Let's just say it was scary.

    However, and lucky for me: My particular closet dwelling monster must not have been blessed with opposable thumbs.

    Because as long as my closet door was closed it was all good. It was not able to open the closet.

    Somewhere over the last 30 years, alas, the monster has evolved. Maybe they're not completely thumbs yet, maybe they are just little stumpy things on their way to opposableness. But he's figured out a way to nudge the door open. I wish I could put the monster back in the closet and close the door on his stupid little semi-opposable stumpy things. But, I can't.

    Mandy had her regularly scheduled every other month MRI on Thursday. The results were somewhat less than what we hoped for.

    First, the good news, the optic glioma, is stable, both in size and enhancement. That is good news overall.

    However, the lesion in the left parietal lobe that has been concerning us for the last several months is enhancing more than it was 8 weeks ago. That is not good news overall.

    We are not yet sure what the official plan will be. It may be to just stay the course. Mandy's neuro-oncologist is re-presenting the case to the tumor board this week to determine if there need to be alterations to the plan.

    Mandy has been having some odd symptoms that are adding to our concern. She was diagnosed with seizures once before, but has since had a normal EEG. But back at the time she was having these partial focal seizures, one of the red flags was sleep disturbances. She has started sleep walking and frequently waking. Given the parietal lobe lesion's new enhancement and location the doctors are concerned she may be having seizures.

    So she will have a 72-hour ambulatory EEG. She will spend her weekend with 20 or so electrodes cemented to her head. The electrodes are wired to a box monitoring her brain waves. A video camera will watch her as she sleeps to help match her sleep patterns to those brain waves.

    It could be nothing. It could be behavioral. It could be stress. But, given her history and the new developments, the possibility of something more sinister needs to be examined.

    Ronnie is leaving for Canada on Saturday. The kids and I will be mostly on lockdown at home because 1) Mandy is very worried about people laughing at her all wired up for her EEG (though I assured her if anyone dared laugh at her, heaven help that person, because there would be a looooong line of people waiting to take him/her out); and 2) because the Ambulatory EEG contraption ain't really as ambulatory as the name would imply.

    So, Wednesday I will take her in for chemo. Friday, I will take her to her neurologist to be hooked up to the EEG machine for the weekend. Then, Monday I will take her back to have the EEG taken off and wait anxiously for results. All the while, anxiously waiting to hear what the tumor board thinks and wants to do next.

    We have a whole lot of anxious waiting going on right now.

    Love to all~

    Tuesday, March 3, 2009

    The Search for a Name or The Diagnosis Part 2

    When I was pregnant with Alannah, the hunt for a name was never an issue. Her name had been picked out since 1990, and she was born in 1994, so, yeah, we were good. There isn't really a suitable diminutive, and frankly, if you tried something like "Allie" on her, you'd likely get kicked in the shins. So, Alannah it is.

    Then Zachary came along. I wanted to name him Jack, after his Daddy. He would've been a cute Jack, too. All blonde hair and blue eyes and a charming sense of humor that will, sadly, have girls flocking to him someday. Jack would have been great for him. But, noooooo, apparently having pushed an 8-pound object through a garden hose does not give me naming rights. Ronnie vetoed it. So, like 9.3 million of our closest friends in 1999, we named him Zachary. You can deduct 20 points for originality. He answers to Zach. He answers to Buddy. He answers to just about anything equally, which is to say you stand about a 3 in 5 chance of being ignored no matter what you call him.

    To the legal authorities who keep track of such things, Mandy is actually Amanda. But don't call her Amanda. EVER. We named her Amanda, fully intending to call her Mandy, but thinking someday she might want a name that didn't sound so cheerleader-esque. Had I known then what I know now, I would have just named her Mandy and been done with it. She calls Amanda her "hospital name." It is actually on her charts at the hospital and at clinic, in big red letters. "PLEASE CALL ME MANDY." She hates Amanda and says it makes her not feel good when people call her that because it makes her think of doctors and hospitals.

    Back in 2005, she spent a lot more time being Amanda then she did being Mandy. I told you about the first diagnosis and how that came to pass here. Since that point, she had regular MRIs and has been followed by a small army of doctors. During much of this time, she had very little that distinguished her outwardly from other kids. We used to joke about how much medical attention our not-sick kid received. We hoped her NF diagnosis would stop with just the cafe au lait birthmarks. We hoped she would be one of the 90 percent of people with NF who live largely asymptomatic lives.

    In 2005, it became painfully apparent she was going to be in the other 10 percent.

    They started slowly, the Episodes, as we came to call them. We needed to call them something, but that was the hardest name search ever. The Episodes, usually started with her seeming drunk: slurred speech, wobbly on her feet, memory issues, all without the benefit of a vodka and cranberry to get her there. As the Episode progressed, she would sometimes lose consciousness, and it almost always culminated in a very violent vomiting spell.

    The very worst Episode was at her birthday party. The story would be slightly less painful to retell if it had started with "It was her 21st birthday and she had one cocktail too many ..."

    But, it was the middle of her 5th birthday party, not 21st.

    At a Gymboree Play Center, not a bar.

    And it was absolutely terrifying.

    A really nasty Episode starting rearing its ugly head and just kept escalating. It culminated with me rocking my unconscious daughter on my lap while the other 5-year-olds played around her.

    Her physicians were so frustrated with what was happening with her that the rule had evolved from "take her immediately to ER when an Episode starts" to "We don't know what's going on and can't do anything to help. So, take her to ER or call 911 only if she is unconscious for more than 30 minutes."

    Do you know how long 30 minutes is?

    30 minutes is a sitcom.

    30 minutes is a relatively short commute to work.

    30 minutes is roughly 10 shuffled songs on your iPod.

    Holding her, rocking her, wondering what was happening with her, wondering when was she going to wake up, being terrified what damage may be occurring ... 30 minutes, is a lifetime.

    They thought they might be seizures. We spent more than a week in the long-term seizure monitoring unit of the hospital with her hooked up to an EEG and plugged into the wall continuously. They caught an Episode on EEG and video. It wasn't a seizure.

    Neurology sent us to Oncology, thinking maybe we needed to address some tumors in her cerebellum. But they were not enhancing (growing) on MRI and didn't appear to be causing any pressure to account for the symptoms. They talked about neurosurgery, but that isn't something you go into unless you know what you are dealing with. We didn't. They talked about starting her on chemo. In fact, they talked about it to the point that they handed me the consent-to-treat form. Then decided they just weren't sure what they were dealing with. It wasn't worth the risk.

    Oncology sent us to Neuro-Oncology -- as it turned out, an NF specialist in Dallas, where the original diagnosis had been made four years previous. Mandy and I got on a plane and flew from Tampa to Dallas only to hear more variations of the constant theme of, "Hm ... well, I have never seen that before." Could be this, might be that, I am just not sure, let me consult with so-and-so, were things we heard over and over. The sound of the phrase "unusual presentation" was worse than fingernails on a chalkboard to me.

    Meanwhile, Mandy could not be out of my sight. School was an issue, playdates were an issue, everyday life was an issue.

    Issues with no answers. None. At all.

    The Dallas neuro-oncologist sent us to see the doctor who wrote the book on NF, literally. So, Mandy and I flew to Birmingham, Ala., hoping and praying that we would find an answer. We got more of the same: "I have never seen this before."

    We chased our tails, desperate for an answer, a diagnosis, a name, a treatment for almost a year, to no avail. We had no idea what we were dealing with and no way to help her. Never have I been so desperate for a name. I just wanted a diagnosis, a prognosis, a treatment. But there was none. It was an incredibly helpless feeling.

    After countless tests, EEG's, MRI's, bloodwork, plane flights and uninsured doctor visits, we still had nothing. The Episodes continued, uncontrolled.

    Every time, at every new doctor appointment, they would call for Amanda Willis. Every time, at every doctor appointment, she would angrily grumble, "My name is Mandy!" She was desperate to just be Mandy. I wanted nothing more than to let her. Just. Be. Mandy.

    And then, they stopped. The Episodes just stopped. They waned at first, less severe, less frequent and then finally they just stopped altogether.

    Two years went by. I got comfortable. I started to believe everything was going to stay OK.

    And then came the routine followup MRI a year ago. Honestly, I was more comfortable going into that scan than I had been in a long time. And suddenly, when that scan was read, words like "chemo," "oncology," "tumor" stormed back into our lives.

    Now, it's been a year since chemo started, since that MRI that showed "significant disease progression." And honestly, I can't imagine ever finding my way back to that comfortable, safe, "maybe everything really will be okay" feeling ever again.

    Now, we have a name. Now, we know what they're chasing. That's all we wanted. Having a name, as it turns out, doesn't make it better.

    Love to all~

    PS A post I wrote a few months back is being featured on the home page over at Divine Caroline. It is the second post on the carousel. Check out "I'm Sorry, What did you say?" over at Divine Caroline.