Mandy's Journal

Stable!!!!!!!

2010-10-07T19:17:00.001-07:00

This?

Is the face of a little girl who still has stable scans one year off treatment!

This?

Is the face of a little girl who will be celebrating her 10th birthday in 2.5 weeks.

This?

Is the face of a little girl, who gets to just be a little girl for the first time since she was about 4.

And this?

All makes me absolutely giddy with joy! I sobbed today in front of God and everybody in my clinical group at the hospital when I got the news. I will be calling the surgeon tomorrow to schedule the surgery to remove her port.

Love to all~

A year later

2010-10-05T21:20:00.000-07:00

It has been just over a year since Mandy had her last chemo. She has pink in her cheeks, bounce in her step, thick and healthy hair and an energy that seems to know no bounds. Tomorrow we go for the one year scan. If that is stable, we will schedule the surgery to remove her port and let go of the last of the physical reminders of the war. We are going to make a necklace or maybe a Christmas ornament out of it. Just so we always know that ultimately, we were very blessed that out of something so scary and so ugly came something beautiful.

Alannah is 16 now and will get her drivers license soon. If you have an errand to run, she's your girl... she will be more than willing to drive anywhere for any reason, I'm sure. Now, if only she had a car.

Zachary is in middle school now and slowing discovering that maybe girls don't have cooties. He is as funny and charming as ever, God help me.

I started school almost 6 months ago. When I grow up, I want to be a nurse and in another two years or so, hopefully, I will be. Pediatric oncology has my heart and I really want to be able to do something there. But, I just finished my labor and delivery rotation and absolutely loved it. I am truly passionate about nursing and really feel like this is the career I am supposed to have.

And, after 19+ years, Ronnie and I are no longer married. The why's and how's and coulda, woulda, shoulda's don't matter now. I am grateful for our marriage and for our children. And I believe, we can both go forward and find joy and love and happiness.

Hopefully, tomorrow brings more news of stable tumors. I will let you know.

Love to all~

Thank you!

2010-02-17T20:15:00.000-08:00

So, we threw a great big party, to watch the first broadcast of the Eukanuba National dog show in which the ACE awards were presented to 5 amazing dogs and their people. You can see Mandy and Poodle's clip from the show here

About 100 of the people who have embraced our family over the last two years joined us and many more who were there in spirit. We put together a little video to say thanks to some of those people. Unless we used the song "Freebird," there simply wasn't going to be a song long enough to sufficiently be able to thank everybody. But, these lyrics were far more appropriate, so, here we go, from us, to you ... Thank you!

Love to all~

From the St. Petersburg Times

2010-01-28T12:14:00.000-08:00

Columnist Ernest Hooper captures Mandy's story and our family's journey beautifully. We share the link with gratitude.

The big night

2009-12-12T20:02:00.000-08:00

On Saturday night in Long Beach, Calif., thousands of spectators learned of a wonderful friendship between Mandy and her Poodle.

You know Electra's story by now; she was the national winner of the Award of Canine Excellence from the American Kennel Club. You know that Electra, or as we know her, Poodle, was given to Mandy by Jane and Cathy, and our hearts barely have room for the gratitude we feel for their generosity. You know that Poodle played a key role in Mandy's recovery as Mandy endured months of chemotherapy.

What you need to know is how incredibly beautiful my bride, my little girl and her dog looked on Saturday night as they took to the ring to accept the award.

Words can't describe how proud I am of all three of them.

Friday under the lights

2009-12-12T19:51:00.001-08:00

Some random shots from Mandy's day Friday in Long Beach:

Mandy and Poodle at the photo shoot Friday afternoon.

Finished with their close-ups.

Mandy opening one of many gifts she received.

Mandy with Ronald Rella (left) and Neil Singer of the American Kennel Club at Friday night's dinner. The AKC was incredibly generous to Mandy and our family.

Photo shoots, meet-and-greet, dinner parties ... the life of a star

2009-12-11T18:28:00.000-08:00

They say it's not easy being a star. They've never talked to Mandy. As the dad of a diva, I can tell you that little girl can do just fine in the spotlight.

Our blonde bombshell and her canine friend, Poodle, have taken Southern California by storm. Her smile lit up Long Beach, Calif., today as preparations were completed for their appearance in the AKC/Eukanuba National Championship, which begins Saturday.

Mandy, Poodle, and Natalie joined the other winners of the AKC Humane Fund Awards of Canine Excellence for a dinner party Friday night. Poodle is among great company; these are some wonderful dogs that are being honored this week.

I realize that you're not here to read my turns of phrase; you're here for pictures. Here are some snaps Natalie sent back:

Poodle and Mandy on their way to their photo shoot

Poodle doing what she does best. Once a champion, always a champion.

Mandy playing tug-of-war with Sage, the ACE honoree for search and rescue. This border collie from New Mexico has worked jobs from New York City on Sept. 11, 2001, to Aruba, to post-Katrina, to Iraq. Quite a résumé, I'd say.

Mandy and Poodle, ready for the dinner party. (Unfortunately, Poodle wasn't invited to dinner.)

At 7 p.m. PST on Saturday, Natalie, Mandy and Poodle will walk into the ring at the AKC/Eukanaba National Championships to receive Poodle's honor. For those of us who are missing it live, the show will be broadcast several times on Animal Planet starting on Feb. 6. For all the show times, click here.

When I talked to Mandy on the phone this afternoon, I was struck by how much joy I heard in her voice. She's loving this experience, and after the last couple of years, well, it's great to hear a little girl just enjoying being a little girl. Even if she's being a little girl on a big stage.

Mandy and Poodle's California Adventure

2009-12-10T16:28:00.000-08:00

Ronnie here, filling in again while Natalie is off on assignment. And what a fun assignment it is.

Natalie and Mandy and Hero Dog Poodle are in Long Beach, Calif., where the spotlight will shine bright (and deservedly) on Mandy and Poodle. Poodle was the winner of the American Kennel Club's Award for Canine Excellence, in the Exemplary Companion category. You can read more about the ACE award, Poodle and all the winners here.

Natalie has been sending pictures back as fast as she can take them. Here are some highlights from the day:

You'll never see bigger smiles at 4:27 a.m. Poodle, Natalie and Mandy headed to the airport.

Poodle and Mandy, on the plane. Poodle ended up with her own seat.

At the American Girl store in Los Angeles.

Hooray for Hollywood!

As for the award, I'm comfortable with saying there are few dogs more deserving of recognition. It's not a stretch to say Poodle was a key component in helping Mandy through her treatment.

This post pretty much sums up what Poodle is to Mandy. Here's the thing to know about Mandy: At heart, she is a caretaker. And it made her heart full to be able to take care of something the way she was being taken care of while she was in treatment. Poodle helped ease Mandy's mind, which without a doubt also helped her physically.

I don't throw the "hero" term around loosely, but it's certainly fair to say Jane Myers and Cathy McGinnis meet the criteria. Jane and Cathy were Poodle's owners (and know her better by her real name, Electra), and it was Jane who gave Mandy this gift. "Eternal gratitude" is insufficient to sum up our feelings for that gift.

Natalie and Mandy will have a whirlwind couple of days Friday and Saturday -- interviews, photo shoots, the award presentation. Alannah, Zachary and I are holding down the fort back in Florida. We'll pass on the sights as we receive them.

Hope for Anissa

2009-11-23T09:32:00.000-08:00

As you give thanks this week, Natalie and I ask that you keep a very special family in mind.

Our good friend Anissa, who has been a source of hope, inspiration, love and soda-coming-back-out-the-nose laughs for Natalie, our kids and me over these last couple of years, suffered a massive stroke on Nov. 17. Anissa has been a shining light for us as we traveled the pediatric cancer road together; her youngest daughter, 5, finished leukemia treatment a year ago.

Anissa, 35, is relatively stable now, but it was very touch-and-go in the first few days. She has not regained consciousness, and a very close eye is being kept on her blood pressure. We’re seeing some very good signs, however; even as I write this, Natalie called to tell me that Anissa made some very deliberate hand movements. Every bit of progress is good progress.

Natalie has been at her side since about seven hours after she got the news; Anissa and her family moved to the Atlanta area in May, and Natalie got there to help as fast as the Georgia State Police would allow.

The kids joined Anissa’s family this weekend, and they’re providing important support for Anissa’s kids (an 11-year-old son and an 8-year-old daughter, in addition to the aforementioned 5-year-old). Mandy has already organized several tea parties for the large contingent of American Girl dolls who now fill the family’s house; Zachary and Anissa’s son are keeping gigabytes worth of home entertainment very busy; and Alannah is providing her always calm, steady helping hand wherever she is needed.

After our friend Mary Ann and I dropped off the kids Saturday, I had to leave Sunday to follow work obligations in Canada. (They tell me I missed Thanksgiving; up here, it was in October north of the border.) It’s never easy for me to do that, but I know that the folks in Georgia are in very good hands (Natalie’s hands are the best, not only to look at and hold but to handle tough situations.)

Support is pouring in from near and far; Thanksgiving dinner is taken care of, Anissa’s wide social network has pulled together in prayer, and Anissa herself, besides being full of love, is even fuller of fight. She has her husband at her side, and lots of hope around her — all the necessities are in place to help her navigate the road ahead.

Flu-like behavior

2009-11-07T18:02:00.000-08:00

It's Ronnie here, guest-posting as Natalie and Mandy are away from home and computer tonight, just in time for me to get home from two weeks in Canada.

Mandy and Natalie are hanging out at All Children's Hospital tonight. Mandy's showing some "flu-like symptoms," three words that have been typed by an awful lot of people over the last several weeks.

Mandy woke up Saturday morning vomiting. No big deal; kids get upset stomachs and stuff all the time, and even Mandy's allowed an upset stomach every once in a while. I got my update on that situation before I took off this morning from Vancouver.

I had a connection in Denver; she had vomited again, but was restful, and most importantly, not feverish. Still no big deal; Zofran and Ativan were doing their jobs to calm her tummy.

By the time I landed in Tampa, well, it was a big deal, because now there was a fever, going up and going up fast. When I made my "Honey, I'm home" call, Mandy and Natalie were already in St. Petersburg.

The fever has apparently peaked at 103. Rapid flu tests are showing negative, but rapid flu tests are notoriously inaccurate. Counts and such are pointing the general direction of something, well, flu-like. Tylenol has joined Zofran and Ativan to keep Mandy comfortable.

We'll find out more in the morning, when the real flu tests come back. Mandy's going to stay overnight, because it's a long ride to the hospital, and we want to make sure that fever stays down before she comes home. Whether it's flu or merely "flu-like," we want it go away.

Happy Birthday!

2009-10-23T19:15:00.000-07:00

Nine years ago today, I became a mom for the third and final time.

Eight years ago today, I learned that Mandy's life journey might be difficult...scary...and courageous.

Seven years ago today, I learned there was a tumor, or more accurately, the potential of a tumor.

Six years ago today, I looked at a toddler, with a beautiful spirit and a gorgeous dimple that never failed to melt my heart.

Five years ago today, I had a little girl in preschool, full of spunk and a zest for life.

Four years ago today, we were in a hospital room, trying to figure out what was causing the unexplained neurological episodes.

Three years ago today, I wanted to believe the worst was behind her.

Two years ago today, I had no idea that every thing was about to change.

One year ago today, I watched my baby girl spend her birthday recovering from chemo the day before.

Today, I look at a little girl who is a warrior, an optimist, a believer. She has a stubborn streak, is opinionated and is learning to advocate for herself. She has been through more in nine years than a lot of people deal with in a lifetime. She has taught me how to smile, how to look for a way and a reason to laugh, how to dig deeper than I ever thought possible for a strength I never knew I had. She has shown me that at any given moment, all that really matters, is just that....THAT MOMENT.

It is a gift to be her momma, one I am forever grateful for.

Happy birthday, Mandy. I love you more than words can possibly express. Today you turned 9 and to paraphrase one of the best birthday wishes you got all day... I expect/ hope/ dream/ plan for at least 91 more.

Love to all~

Today

2009-10-01T19:23:00.000-07:00

It has been one helluva week. And one I promise to recap in greater detail later. But, today let's leave it at the text I sent out after Mandy's appointment in Orlando today.

No surgery! No biopsy! No more chemo!! Right now, she is officially OFF TREATMENT! And right now, that ROCKS!!

All of those things MAY come to be at one point or another. There may be surgery someday. There may be a biopsy someday. There may be more chemo someday.

But, today nineteen long months of chemo comes to a successful end. And today? Is all that ever really matters. And today, is good! Really, really, really good.

Love to all~

Next week

2009-09-26T13:25:00.001-07:00

Mandy has been feeling good since we got home from the hospital, which is good, in the vast majority of ways. In a few ways, it is almost more concerning. If the event on Sunday had led into a bout with a stomach bug or the flu or whatever, it would have explained a lot. But, she feels fine.

I have spoken with the NF clinic in Orlando, where she was just seen about a month ago. At the time, they expressed a great deal of concern about the left parietal lobe area. They felt like it was going to definitely require intervention at some point.

I wasn't quite prepared for that "at some point" to be quite so soon.

The docs over there want a second MRI and feel at this point that most likely a biopsy of that area will be in order.

So, we have several appointments next week, over to Orlando for an MRI, Tampa for what is supposed to be her last chemo before a break, back over to Orlando to have a round table discussion with all the docs to come up with the proper plan.

It will be a difficult week ahead.

As always, we are so thankful for all our friends who continue to amaze me with just how much, how willingly and how often they are willing to step up and help however needed. When I sign off on these posts with "Love to all~" know that those are not just words. It is a statement of just how blessed you make us feel. You all show us so much love and we are truly grateful for each and everyone one of you. Please know we love you all right back.

Love to all~

Home. Do we have answers? Not sure...

2009-09-22T17:53:00.000-07:00

We were discharged this afternoon after completion on the EEG and after the MRI report came back. I am so stupid tired that I am just going to make this very quick, unfortunately I can't make it to the point.

Here's what we know:

The bizarre bloodwork spike....
The docs feel this could be indicative of a seizure and the bodies stress response to it.

The EEG was normal, which I am told decreases, but does not rule out seizures.

The MRI was essentially stable. Extensive myelin vaucoulization, left parietal
lobe still noted that enhances with contrast, bilateral optic gliomas
still noted with intraorbital components.

The CT did note the myelin vaucoulization, as well as noting the left parietal lesion.

Thing about the two radiology studies, the CT did pick up the left parietal lobe area, that coupled with the fact that it is enhancing on MRI makes it almost definitely a structural mass, meaning a 2nd tumor.

What happened on Sunday behaved very much like a seizure or like the
events back in 2005 that were never diagnosed. We searched for a year for an answer to those episodes. We went to Dallas for a doctor. We went to Birmingham, AL for a doctor. We spent countless hours in doctors offices and inpatient in the hospital. And no one could ever figure them out. It was heartbreaking and incredibly debilitating to Mandy. They were happening several times a week at the worst point. Eventually the rule became, as long as she wasn't unconscious for more than 30 minutes, don't bother going to the ER. They didn't know what to do to help her. We hit 29 minutes once. It was pure hell. And the longest 29 minutes of my life.

As for Sunday, she was perfectly fine before the episode and fine within several hours after, and has not had another episode since. However, frankly, we are not optimistic that another one won't occur. Given her history, the doctors certainly aren't optimistic that it was a one time event either, and were very honest about that. I was sent home with the eerily familiar instructions of 2005, "Call us when it happens again." They were not certain they were seizures, but were not certain they were not either. They did not want to do anything further at this point as far as treatment goes for the potential seizures, or not.

When I got home I called her regular neurologist and gave him the run down of test results. He has been her neurologist since 2003 or 4...I can't remember for sure, but a long time. He was her primary through all the uncertainty back in 2005. He was 110% certain that Sunday's event was a seizure. The convincing factor for him? The crazy spike in white count and ANC in the bloodwork. He is so sure he was ready to call in a prescription for seizure meds right that minute.

I also spoke with my friend, who was also Mandy's geneticist back many moons ago when we still needed a geneticist. I tease her that she is a one stop shop for me as she happens to be married to a neurologist. She concurred that she was certain it was a seizure.

So, what to do? Seizure meds or not to seizure meds? We are thinking on that.

The fact that her head turned to the right during the episode on Sunday and that the area in the left parietal is almost now 100% certain to be a second tumor does concern me greatly. The left side of the brain controls the right side of the body. So,a head turn to the right would stem from the left side of the brain.

She only has this week and next week left for chemo and then she is done. For now.

We have to remove the chemo to know if that area will do anything. We can't leave her on it indefinitely. I get that. And I agree. But, to take her off chemo, especially with this development scares the ever loving crap outta me. When we remove the subduing factor of chemo will that tumor take off and grow like crazy? No one knows.

That, among other reasons is why we are so careful about how we present this "end of chemo" to her. It's a break. We hope the break last a long time, forever even. But, we have to temper that with a degree of realism.

It probably won't.

The fact is, Mandy has neurofibromatosis. She lacks a tumor suppressor gene. Her body doesn't know any better now not to grow a tumor than it did before. The optic glioma is still there and now this 2nd tumor is there. And with the addition of the potential seizures..... it's a chemo break. I just hope and pray a break is the right thing to do. And that it lasts.

And now, I am beyond exhausted. I am not even entirely sure that this post is the least bit coherent. If not, I apologize. If you have a question I didn't answer or I didn't answer coherently, feel free to ask. But, in the meantime, I think I have amassed a total of 4 hours sleep since Saturday night. So, I am going to bed. Have to be up at 5 to get two kids to school and one to chemo. Ronnie comes home on Friday. Zachary starts his audition process for the 5th grade musical tomorrow. He desperately wants a big role. Send him some good mojo, if you would. Alannah had seatiing auditions at her youth orchestra last night, that she actually managed to make it to, due to some wonderful friends. Good mojo for her too. It is so hard to have our family scattered to the winds like that. I was so happy to be able to hug all three of my kids tonight. They have been worried and scared, but rise to so much more of a challenge than they should ever have to. They are amazing kids, all three of them and we are so blessed to have them.

A million thanks to a million people for all the love and prayers and help with Alannah and Zachary and food and visits and and and the list goes on and on. We are oh so blessed to have you all and so incredibly grateful.

Goodnight and

Love to all~

It's after midnight...

2009-09-21T21:06:00.000-07:00

It's 12:07 am in Room 261. Mandy and I are both exhausted. She JUST fell asleep. Like minutes ago. Hospitals are not terribly conducive to rest and relaxation.

This is where things stand today, tonight, this morning....whatever.

I have the CT report in my sweaty little palm. It reads

"Impressions:
1. No acute intracranial process identified.
2. No evidence of intracranial hemorrhage.
3. In this patient with history of neurofibromatosis, change of myelin vacuolization part as read in correlation with prior MRI of 06/25/2009.
4. No convincing new abnormalities seen.

Findings:
Computed tomography of the head was preformed without the administration of intravenous contrast material.

In this patient with history of neurofibrmatosis, optic pathway glioma and extensive myelin vacuolization as seen on prior MRI's, the most conspicuous CT signal abnormalities are seen with low attenuation identified bilaterally medial basal ganglia/globus pallidus.

Left parietal lesion only faintly visualized on this CT study.

There is no evidence of acute intracranial hemorrhage.

There is no shift of the midline structure."

We had the MRI today. And though I looked at the disc and have my amateur radiologist opinion, I will wait until the actual professional report to post those findings. She is hooked up to the EEG now, and will remain so for a while, at least 24 hours, possibly longer.

Counts were back to to normal for her today ANC 1100, WBC 3.36, platelets 292. Which makes that whole bizarre increase yesterday even more bizarre.

Hopefully, we will have a better idea tomorrow. I remain terrified that it will be a repeat of 2005 and we won't know what's going on. But, I am equally terrified that they will diagnose something that would be equally or even more scary.

I want to just take a second to throw out some thank yous. It truly does take a village to raise a child, but lemme tell ya, you really have to lean hard on your village in times like this. And boy oh boy, does our village step up.

Charitta and family who are housing and caring for Alannah, the Coopers and now Anne who are housing and caring for Zachary. Jane and Greg and gang who are housing and caring for the dogs. Kim and Mary Ann who went all kinds of out of their way today to make sure that Alannah didn't miss seating auditions at youth orchestra tonight. Amanda who came to visit bearing a mocha for Momma and a Webkinz and sticker book for Mandy. Angela who came to visit bearing gifts and food and laughs. Kate who, with the help of several Facebook friends came and dropped off a couple of perfect mochas for Momma, a pizza for a starving Mandy and a ton of pastries from Starbucks. A ton of texts and phone calls and messages letting us know that so many people are praying for and loving Mandy, and all of us.

Mandy summed it up when she said, after being NPO(without food or drink) all day long and a sedated MRI and while she was hooked up to the EEG machine, "You know, it was a pretty good day today for being in the hospital."

We are blessed and very thankful to be surrounded by the most amazing friends and neighbors and adoptive family. We love you all.

I am going to try to nap. Will update again tomorrow when I get counts and MRI reports.

Love to all~

Update from Room 261, again

2009-09-21T09:11:00.000-07:00

We had a neurology consult this morning. She believed it could have been a seizure and wanted an EEG. Oncology also came in and said they wanted an MRI and agreed with the EEG. Her counts are all back down to normal(for her) range again. The white count was back down to 3.36 at 4am today from 6.0 in the ER last night. ANC was back down to 1100 from 4620 last night. No one is quite sure what to do with that. The ER doc had told me that sometimes a seizure can falsely elevate the white count. But, I don't know how common, or even accurate, that is.

So, the plan as it stands right now is this: She has been put on NPO status(no food or drink) for the next 4 hours. They will first do an MRI. The CT they did last night would only show things like fluid or pressure, not necessarily tumor growth. The MRI will show that, if there is any to show, which hopefully there isn't.

After that they will hook her up for an EEG for about 24 hours. The neurologist will then review that and determine if she wants it for an additional 24 hours or not.

She is still feeling fine, is bored out of her head and now hungry. Hopefully, these tests will give us something to go on. I am hoping maybe the really bizarre bloodwork will give them some ideas...but, I don't know. I am just really hoping and praying this isn't the start of something like what happened back in '05 that no one was ever able to figure out, diagnose or treat.

At this point, I am just hoping for answer and not to have that nasty cycle she had back that start up again.

We love our hospital and doctors, the one thing that is a bummer is that there are no private rooms, even on the oncology floor. So, we are about to be joined by a 3yo roommate.

That's about all I know for now. Will update later when I know more.

Love to all~

Update from Room 261

2009-09-20T20:17:00.001-07:00

A room actually opened up on the oncology floor. So, we stayed. The nurses on the floor are leaning toward seizures. Her bloodwork is all out of whack.
Wednesday
ANC 1920(oddly high), Platelets 339, WBC 4.95(oddly high)

Friday
ANC 1120, Platelets 279, WBC 2.36 (much more normal on all account)

Sunday
ANC 4620, Platelets 272, WBC 6.0 (freakishly high on everything, except platelets, which are a little low from her norm)

We haven't seen number like that since she has been in treatment. EVER. Apparently, sometimes seizures can elevate the white count. Who knew? Something to do with the stress it puts on the body, which makes sense, I suppose. So, we will know more tomorrow when they do her counts. I am told the anti viral she was on would not increase those.

She is feeling 100% tonight. I would be happier if she were sick, frankly. Because this came on so suddenly and left so completely it is more concerning for what it COULD be then if she had, say, the stomach flu.

So, we are here for tonight. Suspect at least an EEG and possibly and MRI also will be ordered tomorrow. CT today showed no acute changes. But, CT's and MRI's don't always show the same thing. More accurately, and MRI shows more.

So, for at least tonight and part of tomorrow, we are residents of Room 261.

Wonderful friends stepped up and took Alannah and Zachary as Ronnie has to leave for Canada tomorrow at like 4am or something crazy.

That's about all I know for now. Thanks so much for all your prayers and love.

Love to all~

Update from ER

2009-09-20T15:40:00.000-07:00

Tonight's broadcast is coming to you from the ER of All Children's Hospital. So, we are going to take a "the facts, just the facts approach."

So, Wednesday went off fine, except for the fact that her counts were kind of wonky. Everything was falsely high, and seemed out of whack. Got chemo, came home, all was fine.

Thursday I get a call from Mandy's teacher that a little girl in her class went home with what was presumed to be the flu. So, Friday morning I called clinic and said she had an exposure, as the plan had been to put any of the immune suppressed kids on Tamiflu if they had a direct exposure.

We get to clinic and she is running a low grade fever. Upon further examination of a sore she had been sporting on her lip for several days it is believed she had/has a herpes infection. Came home with anti-viral. Fever stayed low grade through Saturday afternoon, but she felt fine.

Sunday, she woke feeling fine, acting fine, still no temp. She was in her room and came out with zero color at all and said her head at a 9 on a scale of 1-10. She NEVER complains, so that was a huge statement for her to make. She was also complaining of tummy upset.

She laid on my lap while I paged the oncologist. While she was snuggled into my lap she jerked her head 4-8 times or so in rapid fire form to the right and then threw up.

Her speech was slurred, she was off balance and said her vision was blurry.

The oncologist called back and said to come in. She was very lethargic in the car and sleeping off and on. She threw up one more time on the way to the ER, about an hour away.

By the time we got here, she was stating to improve and her color was coming back a bit. By a few hours later, she seems close to 100%. She is now asking if we can order pizza. This is all scarily similar to "episodes" that happened seemingly endlessly back in 2005 that we never got a diagnosis for.

They did a CT in the ER that showed no acute changes.

I have been given the choice to take her home and follow up in the AM for EEG and possible MRI(but she has an MRI scheduled in a little over a week.) I have spoken to her neurologist who was treating her back in '05 with the episodes no one could figure out. I wrote about those here before click here to read that post.

He said to call at 9am at the office and he will try to get an EEG right away. MRI....we will have to see. If there was anything hugely significant hydrocephalus, significant growth, etc. it would likely be seen on the CT. With an MRI pending in a little over a week, they may just let that one stand.

So, we are sitting in the ER and trying to decide if we should stay here or go home and follow up tomorrow. The good news is she seems to be feeling fine. Counts are good, white count is 6.0, which is normal for the non-chemo population but oddly high for her. It was 2.36 on Friday. That could be from the herpes infection, or possibly even the antiviral, I believe. A white count can be falsely elevated following a seizure too, I am told by the ER doc.

So, I am going to sit on it for another hour or so and then re-asses where she is and see if we are better going home or better staying here. If she has another episode, I would like it to be here, where they can see, assess, medicate if needed. But, I don't want to hang out in an ER just for the heck of it. They don't have a room on the floor, so we would likely be in the ER for the night. Not helpful for her getting some rest.

Ronnie is leaving for Canada in the AM... Kids and dogs have already been dropped off with wonderful people who will watch out for them.

So, there ya go. Will update more later.

Love to all~

The past week

2009-09-07T20:56:00.000-07:00

We have had a really busy week with medical appointments. Chemo Wednesday and a trip to Orlando on Thursday to see a group of doctors who are now running a Neurofibromatosis clinic. We got a lot of good information and though some of it was not what we wanted to hear, we feel good about their knowledge of NF and brain tumors.

We went to the American Cancer Society Families R.O.C.K weekend in Orlando this weekend. We came away with some valuable information to discuss with Mandy's medical team. Plus, we got to hang with our buddies the Dicksons and the Cavanaughs. It was a great event, we learned a lot and the kids had a great time.

A bit of housekeeping, just as an FYI, the restricted accounts for all the patients at the Children's Cancer Center are being closed. Any further donation made to the Center in Mandy's name will not be specifically for her as it has been in the past. The donation will now be a general donation to the Center. We will be using our Paypal account specifically for donations for Mandy from this point forward. The information appears over under Mandy's Fund on the right of the page. We have been so touched by so many peoples kindness and generosity. Thank you so much. You have truly lifted our hearts with your love and kindness.

Most importantly, a very special friend lost a very special husband early this morning and two very special children lost a very special father after a long battle with Glioblastoma, the nastiest of brain tumors. Please say an extra prayer for this beautiful family. Tyra and Steve shared a love that was the stuff of movies and novels. He was far to young to be taken by such a dreadful disease. I know the gates of heaven were thrown open wide to welcome such a warm, kind and giving soul. Steve Damm, I am honored to have known you. The world is a better place because you were in it.

Please remember to say I love you often. You can never say it, or hear it enough.

Love to all~

Yesterday... not the Beatles version

2009-08-24T20:14:00.000-07:00

I swore I would never be her.

You know the one.

The one you haven't seen, well, ever, as far as you can remember.

She's the older lady at the family picnic. The smell of her gardenia perfume arrives just before the screech of her voice. "It seems like only yesterday I was changing your diaper! You had the cutest little butt ... just like a couple of dinner rolls!" She pinches your cheek with her chubby fingers, completely disregarding that you're 19 now and might file assault charges. You try to smile, and hope the smear of macaroni salad she left on your cheek isn't as noticeable as it feels. She waddles away, but the gardenia stink isn't going anywhere anytime soon.

Of course, this was made all the better if your teenage boyfriend du jour was there with you. Better still if she waddles back so she can tell the story about how you got bored once waiting for your mom to show up after a nap and took your poopy diaper off, exposing your cute little dinner-roll butt, and used the diaper's contents to express yourself artisically on your bedroom wall.

Good times.

And though, as I have aged, I now see the merit in -- and have every intention of -- sharing every ridiculous and embarrassing anecdote with my kids future boy- and girlfriends, I swore I would never do the "It seems like only yesterday ..." part.

But, holy cow...my kids start school tomorrow as a sophomore, 5th grader and third grader. And I'll be damned, but it DOES seem like only yesterday.

I remember being a sophomore...ohhh, do I *remember* being a sophomore. And that? Is one scary thought now that Alannah is that age. She is a beautiful girl, inside and out, with a concrete definition of right and wrong. I hope and pray that all we have tried to teach her sticks with her through this time in her life. The next few years is the time when it becomes evident whether or not all those talks took. You know the ones on drugs, drinking, sex, smoking, responsibility, never getting in the car with someone who is drinking, you can talk to me about anything....etc, etc, etc. It is our job now to hold her really, really tight, while letting go a little and to let her know that we all make mistakes at that age, but to pray silently and fervently that none of those mistakes are catastrophic for her.

Fifth grade...the beginning of that inner circle of hell to parents known as adolescence. Zachary is a really good kid, with a heart of gold. But, I have funny feeling his snarky sense of humor(I don't know where he gets THAT. *snort*) is going to get him beat up, or something close to it, sometime in the next 3 years or so. He has a rock hard exterior and is a big mush underneath it all. It is our job to raise a MAN, and all that entails. That is not always easy. It is so much more than teaching him to open ladies doors.... Thankfully, he seems to know a lot of it by instinct. Adolescence is a horrid time. He would never let you know it, but his heart is easily broken...I hope and pray that his adolescence is kind to him. AND to us.

Mandy has been through more by the time she has entered third grade than most people go through in a lifetime. In some ways she is incredibly mature and wise beyond her years. In other ways, she is very young and somewhat behind her peers socially. She can talk a nurse through accessing her port in the most grown up of ways. She can explain to a doctor that she can have propofol as an anesthesia, but not any inhalant due to malignant hyperthermia. But, being 8 comes a little harder for her sometimes. She is an amazing little spirit, with a mothers heart, the strength of an army and a bossy streak. Soon, her only job will be to be 8, I hope. And our job is to try to reteach her how to do that.

So, I swore I would never be her...that it-seems-like-only-yesterday lady. And though I won't say it out loud, as I send them all off into the world tomorrow, I will think, "It seems like only yesterday that you fit in the crook of my arm and puked breastmilk on my shirt at least 8 times a day. I hope the world is kind to you, my little dinner-roll-butt babies."

I will only think those things.

I won't say them out loud.

Because, really? To launch into the whole it-seems-like-only-yesterday speech, I would need macaroni salad. Plus, I don't waddle and I really don't like gardenia perfume. But, I WILL tell every ridiculous and embarrassing anecdote at any and every opportunity. Parenthood DOES have some privileges after all.

Love to all~

A big favor

2009-08-21T08:28:00.000-07:00

Could you pretty please take a second to click here and vote for Mandy's poodle? She stands a real shot at this!! Mandy is LOVING watching those numbers climb. Besides, seriously, could you find a cuter picture?

You can vote once per day/per computer until midnight pacific time on Sunday. The weekly winner gets $500 and has a 1 in 12 shot at a million. Thanks so much!!

Chemo went well this week. Down to only 6 treatments until a well deserved break!

Love to all~

Michael Perez

2009-08-17T13:21:00.000-07:00

It was cold, as it always was at Lightning games. But our room was warm and loud. We were in a suite with two other pediatric oncology families. There were at least 10 kids running around and eating and yelling for the hockey game.

I sat in a chair next to Mandy, kind of watching the hockey game and kind of watching an adorable little brown-haired boy, probably about 2 years old. He was running up and down the stairs of the suite with his Momma close behind, spotting him to make sure he didn't fall.

So cute. So happy.

My heart melted.

I turned to talk, or more accurately, listen to Mandy and felt a pat on my knee. The adorable brown haired boy stood in front of me with his arms stretched up to me. The universal, "Pick me up" sign to mommas everywhere.

My heart melted.

I looked to his mom for permission. She nodded and smiled.

So, I leaned over and scooped him up onto my lap. He snuggled into my lap like he had known me forever. He stayed on my lap for most of the remainder of the game. I darn near sprained an ovary holding this adorable little man.

When we left the game, he hugged me and kissed me with the sincerity and love that only a child can.

My heart melted.

Every time I was lucky enough to see Michael after that night, he always had a hug and a kiss and a smile for me. For everyone. Most of all his momma and his big sister.

I got a call from his mom yesterday. She was calling from the funeral home. She was making arrangements to bury that beautiful little boy. He had fought long and hard against the tumor that invaded his brain. Some things can't be beaten.

My heart broke.

I am honored to have shared a few moments of that precious boy's life. He was always an angel; now he has the wings to prove it.

Rest in peace, Michael.

Love to all~

Contest for Poodle and Mandy

2009-08-13T07:44:00.000-07:00

A certain little girl and a certain big white fluffy Poodle are entered in a cute dog contest. The weekly winners win $500 and are one of 12 entered to win a MILLION DOLLARS!

Ok, seriously, the $500 alone would totally rock. Plus...I dare you to find a cuter picture than this one. So please, go here and vote. We have until 8/21 at midnight PST and vote for them!!

Love to all~

And then there were seven...

2009-08-12T22:24:00.000-07:00

We are down to seven...one more chemo in the bag today and only 7 more to go. Counts were good and all went smoothly.

I am swimming in a sea of bipolar with the whole soon-to-be-off chemo thing. One part of me is absolutely thrilled. It has been a long year and a half. Her body needs a break. That's the sane and rational part.

Then, there's the insane and irrational part that is beside myself terrified to take away the security blanket that the chemo is. Crazy, huh? It's okay to say it. I have become one with my crazy. We don't want to keep letting that benevolent poison that chemo is, drip into her body once a week if she doesn't need it. But. What if she does?

The sane side of my brain... the happy, lollipop tree and cotton candy cloud side of me is just freaking giddy! No chemo means more time in school, which thrills her. It means the chance to get back to dance or gymnastics or cheerleading or whatever other girly pursuit she has interest in. It means an immune system in recovery. It means a return of her stamina, her color, her hair. It means a step towards a more normal childhood for all of my kids. It means so many things. It means a great reason to throw one damn big party!

But, then there's the dark side, the things-we-don't-talk-about side. When visiting THAT side... the crazy and irrational side of my head, it looks a little something like this. We have been giving chemo for so long, what if she comes off and whatever we have been subduing surges back to life and throws it's own big party and invites its friends and family? What if that thing in the left parietal lobe, that no one is really sure about, is in fact something formidable and has been waiting quietly for a chance to take hold?

How quickly will her counts and immune system recover? How long before she recovers? Will her neuropathy go away entirely? How accurate is that new research that shows frequent rapid growth post treatment with Vinblastine? What will her long term effects of chemo be? How long before she ends up back in chemo again? Will she end up back in chemo again? Why do birds sing so gay? Why do fools fall in love? What is the square root of 1683.94? Did I remember to turn off the curling iron this morning? What IS that funky smell in Zachary's closet?

Yea.

Welcome to my crazy.

Come on in, have a seat, make yourself at home. But, you will have to speak up so I can hear you over the voices in my head.

Again, I am asking to please send some extra love and prayers to the Damm family.

Love to all~

News...

2009-08-07T19:17:00.000-07:00

So, when your Daddy is in the newspaper business and you decide you want to make a newspaper, no construction paper/marker combo will do. Nooooo, in our house when you decide you want to make a newspaper, Daddy (former award winning newspaper designer turned newspaper software geek) gets allllll They-are-following-in-my-footsteps giddy.

So, Daddy gets to "test" his work software on the most demanding customers around...an 8 year old girl and a 10 year old boy. This is software used by some major newspapers worldwide and now by the staff of Dogs Daily

There are real stories on there (make sure to enlarge it so you can read them) written by the reporters and photography by Zachary. Subscriptions are available and advertising inquiries are being accepted. :-)

(Larger versions of the stories below - click to enlarge):

In other news, I am headed to Texas for a few days tomorrow to help out at our friends, the Damms. Send up some extra prayers for them, please...they are amazingly good people.

Love to all~

A music lesson

2009-08-07T05:59:00.000-07:00

My house is never quiet. EVER. Even over the din of three dogs and three kids there is one constant. Music. There is always music coming from one direction or another. Often, from many directions simultaneously.

Alannah is crazy talented on her viola. She truly has a passion for it.

So much so that she just went to Strings Camp and came home after two weeks and said, "Ya know, I think I would like to go to a different camp next year. That one is too strict."

Me, all in my best reprimanding Mommy voice: "Honey, it is a fun camp but you are supposed to work. It is not all fun and games there."

Her: "No! No, What I mean is they would be all forcing us to go play football or swim or whatever when all I wanted to do was practice."

Me, now in my best smart voice: "Huh???"

Cause that's totally how I would have been. Uh-huh ... no recreation for me, no flirting with the boys, nope, I got work to do, by golly. Yup, I would be the one playing till my fingers bled in a room by myself ... or, ya know, NOT.

Zachary just got a guitar. Cause what that blonde-headed, surfer-boy-wanna-be, tan-swimmer-body, make-anybody-laugh-till-their-beverage-comes-out-their-noses, always-tell-the-girls-how-pretty-they-are, charmer needed was one more reason to make chicks dig him. *snort*

So, the boy got himself a red Fender Stratocaster and can already whip out a mean Georgia Satellites tune. Not exactly an appropriate tune, "Keep Your Hands To Yourself," but Daddy justified that as the first lesson because it was easy.

Pfft, a whole lot easier to teach that song than it is to give an answer to the boy when he asks about one line in it.

"So, Momma, what IS the story about free milk and a cow?"

My response? Again, in my best smart voice, "Huh??"

Mandy dabbles a little in piano, but her first musical love is listening to it and singing it. She needs an ipod with a screen of her own in the worst way. Girlfriend loves her some music videos and can listen, sing and watch for hours.

I wrote once before how her Neurofibromatosis was diagnosed because of a song. Rather an odd form of doctoring, if you ask me, but whatever.

One of her favorite songs used to be "Bad Day" by Daniel Powter. She loved that song before she started treatment. Then, it became a staple for chemo day. We needed an Asiago bagel from Panera with 8 butters (yes, 8), a Starbucks Triple, Venti, Nonfat, No Whip, Extra Hot Mocha for Momma, with a matching Tall ice water in a hot cup for Mandy and we needed to listen to that song at least twice en route to clinic.

If you try to play that song now, she gets very upset.

"I hate that song now. It reminds me of being sick."

So, Mr Powter, we need to talk. It's not you, it's me. But, we simply can not see each other anymore. EVER. I'm sure you can understand.

She has had many favorites, over the years... Kenny Chesney "When the Sun Goes Down" or Alan Jackson/Jimmy Buffet "5 O'Clock Somewhere" and anything by Carrie Underwood. They tend to ebb and flow like favorite songs do. (And yes, I realize my girl, tends to like her some beachy,drinking music. What can I say, her Momma once called her Grandma at the age of 8 or so and sang alllllll the words to "Margaritaville." Yea...apple, tree...one falls pretty close to the other.)

One though... one, has remained constant. It always gets a "Turn it up, please, Momma."

"It's a Great Day to be Alive" by Travis Tritt. Even as a wee little thing, she LOVED this song. Still does.

This song is an embodiment of her. She has taught me, oh so clearly, you make a choice. Every day. You make a choice, no matter what that day is or what it brings, the power to make it a great day is your choice. Gist of the song: No one said life was easy, but it is what you make of it and there is happiness everywhere if you are willing to see it.

What an incredible gift that outlook is. I am honored to watch these three little music lovers grow.

Treatments are down to 8 now! 75 weeks down, 8 to go. How about them apples? So guess what? We are going to have a party, in March, Spring Break-ish time. We are going luau theme because Mandy's first-choice wish trip was to go to Hawaii to learn how to hula dance. I nixed it though, because a) it was too far and would have been too much for her and b) I had visions of being mid-flight, needing a doctor RIGHTFREAKINGNOW and having only whales and the occasional giant squid as my available medical staff. No thank you. Someday,(when we win the lottery) we will get her to Hawaii for real, but in the meantime, it is grass skirts and coconut bras for everybody right here at home!

Think I can get Travis Tritt to come to the party and play his song for her? I doubt he has a bigger/cuter fan anywhere!

Love to all~

Time...

2009-07-28T20:07:00.001-07:00

Time can be a funny thing. I got a phone call almost 18 months ago from Mandy's neurologist with results from her most recent MRI. I can't tell you exactly what was said, because my head started to spin shortly after he said hello. But, I do know words like "significant disease progression" and "chemotherapy" and "substantial growth" were used. A lot.

After numerous consultations, with numerous doctors, at numerous appointments, it was confirmed, unanimously and repeatedly, that chemo needed to start and would last for approximately 18 months.

Eighteen months.

Chemotherapy.

Chemotherapy for eighteen months.

Holy crap.

Eighteen months.

Well, it has almost come and gone, that eighteen months. It has wound up being somewhat longer than eighteen months, ultimately. Sometimes it feels like a lifetime ... I almost can't even really recall our lives B.C. (before chemo). The weekly clinic visits are our norm now.

It seems like forever ago that we didn't need to have a 1.3 pound medicine bag in the car, complete with narcotics, Emla cream, Glad Press-and-Seal and a thermometer.

It has been eons since I didn't obsess over her blood counts every week.

A lifetime since she went to school five days a week.

A year and a half ago everything changed. And most days, it seems even longer than that. Like it has just always been our life. It seemed like the point where chemo could safely come to an end would never get here.

And yet? Here it is. After this Wednesday, only 9 more weeks. 18+ months has been whittled down to a mere nine weeks. Funny how our perception of time has changed. There was a time when nine weeks would have sounded like long time. Now, ten more treatments, nine more weeks, well, that's just right around the corner.

Love to all~

Where's Waldo?

2009-07-13T21:28:00.000-07:00

We were all all over the map this last week.

Literally.

Alannah was finishing up week 2 at orchestra camp, 40 miles to the East of home. She had a great time and played an amazing concert that her Daddy got to go see, but I missed for reasons that will be revealed later. I saw the video and it was fantastic and she had a blast!

Zachary was rescued from a week of more girliness than he could possibly stand or should ever be subjected to by Anissa and family in Georgia, 400 miles to the North of home. Mercifully, I don't have pictures to back this up, but, I am told there were BB gun shots fired at a gross dead thing. Somehow, this is cool. But, I have boobs and therefore do not understand how or why shooting anything, with or without maggots, is cool. But, he had a blast and owes Anissa BIG for saving him from....

Mandy and I were up to our eyeballs in bedazzled, glittery, foofoo pageantry this week in St Pete, 40 miles south of home. The ridiculously sweet and absurdly gorgeous Miss Pinellas County, Brittany Wardell asked four girls from the Children's Cancer Center to be her Sunshine Princesses in the Miss Florida pageant. Now, anyone who knows me knows that I could not be further from the stereotypical pageant mom type than I am. My kids left the house today in a dirty t-shirt he picked up off his floor, unmatched socks since she couldn't find any that matched and with only one having brushed her teeth. Had you asked me if I ever thought I would find myself backstage at Miss Florida or any other pageant for that matter, the hysterical laughter that would have ensued would have caused me to fall unkempt head first into my huge pile of unwashed laundry and died from dirty sock aspiration, but... if you build a tiara, Mandy will come.

Through the generosity of several amazing groups and people the girls were treated to gorgeous princess dresses.

And a week of princessing, the likes of which they had never seen.

And our Miss Pinellas county, loved on her girls every chance she got and could not have been sweeter to them. Mandy, who takes a while to warm up to anyone, simply adored Brittany within 5 minutes of having met her. And Brittany? Girlfriend can rock a bikini, lemme tell ya. If I looked even 1/8 as good in a bikini as she does I would wear it to Target, church, to shovel snow(ya know, if we lived somewhere that had snow), the grocery store, PTA meetings and Starbucks. And? She was sweet. And smart. I know, right??? If she weren't so darn nice, I might have to hate her just a little.

It was some long days, but Mandy LOVED every second! And I? Managed to not punch any pageant moms, which I think showed saintlike restraint on my part.

Thank you to everyone who made these four super special girls feel like princesses! And Brittany came in second runner up! Mandy said at least 732.5 times, "I am just so proud of her!!"

I put nearly 2000 miles on my car in a week, delivering and retrieving my kids from the far reaches of the planet, but all my scattered kiddos are now back where they belong, at home!

And a huge event today...I made Mandy's end of treatment MRI appointment. Twenty months of chemo will come to an end on September 30. The tumors aren't gone, and likely never will be. And due to her Neurofibromatosis, there is a fair chance we will have to treat something again, somewhere down the line. We are explaining it to the kids as an indefinite break from chemo. I wish I could promise it will never happen again.

I can't.

But, the bell is about to ding on Round One and she will have won with a knock out.

Love to all~

15 years ago....

2009-07-04T08:09:00.000-07:00

Fifteen years ago, my dream came true. I became a momma. As Hallmark-y as it sounds, it was truly what I always wanted to be.

Fifteen years ago, right about now, I was "explaining" somewhat adamantly to a nurse that if she did not take me down to NICU soon to see my baby girl that I was going to walk my drugged behind down the hall, with said behind hanging out the back of my hospital gown for all the world to see. And given that I was, at that point, pretty medicated, the chances that I would fall in transit and sue and rename the hospital "Natalie's Exposed Hiney Memorial" were execeedingly high, she really needed to consider if she wanted to work in a hospital with that name on it.

She took me to NICU.

That moment, that day, when I looked at her through the glass, I made a million promises. Some I kept, some I tried to keep and failed and some, that involved ponies and castles and never letting her heart be broken ... well, some were just too grandiose to keep.

That said, you break her heart, and you will have to deal with me. I have already threatened to expose my hiney, fall and sue. You really wanna go up against me? I think not.

Alannah, thank you for showing me the ropes. Thank you for being such an amazing young woman. I wish I could take the credit for the beautiful person you are, inside and out, but I can't. You are a gift and a blessing and one I am certain I have never been worthy of. But, I promise to keep trying to be. And that's a promise that will go in the "KEPT" folder.

I love you. Happy 15th birthday!!!!

Love to all~

So much to say, so little words to say it

2009-07-01T16:16:00.000-07:00

I have never been accused of being too quiet or of not having anything to say. That said, it has been quite some time of me not having much to say on here.

I'm sorry.

We have had a seemingly endless array of a variety stress lately, and to be honest, I can't seem to organize my thoughts enough to put together a coherent post.

So, for starters, kids ...

Alannah is away at orchestra camp for two weeks. She made 3rd chair out of 13 violas in an age group where she is the youngest. She had a killer early birthday party, of the boy/girl variety, which was more than enough to give me (more) grey hairs. She will be 15 in a matter of days and eligible for a learner's driving permit, which is more than enough to give me (even more) grey hairs!

Zachary is back to competitive swimming and loving it. He is in constant motion and always looking for something to do/somewhere to be/someone to make laugh.

Mandy is good. We will be extending chemo an additional 6 weeks past the original end date and barring any complications or growth should be looking at ending this treatment at the end of September. Hopefully it is a permanent end to treatment, but we know with her neurofibromatosis that it may very well just be a break.

Her last scan was last week and was stable in both the optic glioma and the left parietal lobe lesion. We had a very scary couple of moments when after her MRI she started to run a little bit of a fever. For Mandy, due to her Malignant Hyperthermia susceptibility, any kind of post anesthesia temperature is cause for great alarm. They held her for an extra hour or so and it passed and all was well.

We hired a company to re-roof our house. Their "work" allowed it to leak, causing several thousand dollars worth of damage to the inside of our home. The fourth occasion woke Mandy in the middle of the night, when it leaked directly onto her, as she slept in her bed.

Yeah.

They? Were relieved from further duty.

A second company came in and did the job with no leaks.

I am tired. And in need of a vacation. And quite possibly stressed out. And tired. Did I mention tired?

All of this has led to my head being the word version of that quote, "It's too crowded so no one goes there anymore." Which has led to me not being able to finish a post, though in my incredibly weak defense, I have started several.

That's the gist of it all, in a nutshell. I promise to try to do better about posting.

Love to all~

What love is....

2009-06-08T21:04:00.000-07:00

Love is patient....enough to to stand in the sun selling tickets or collecting change or manning a garage sale.

Love is kind....enough to show up with dinner every single Wednesday for a year and a half.

Love is never boastful, nor conceited, nor rude; never selfish, not quick to take offense...enough to endlessly, selflessly support another family.

There is nothing love cannot face....especially when faced together.

there is no limit to its faith, its hope, and endurance...enough to share when someone else's faith, hope or energy runs low.

In a word, there are three things that last forever: faith, hope, and love; but the greatest of them all is love. And we are incredibly blessed to be enveloped by all three.

Thank you to each and everyone of you who has reached out to our family in a million different ways over the last year and a half.

Love to all~

Carnival tomorrow!!

2009-06-05T20:13:00.000-07:00

Come on out, y'all! Kid friendly fun all day Saturday from 2-8! Lightning Girls, bounce houses, pony rides and even a margarita and beer bar. Seriously, what more could you ask for on a Saturday afternoon?! There are some great raffle items also! Hope to see you then!!

Love to all~

Mandy-isms

2009-06-01T20:02:00.001-07:00

Mandy on the credit crisis

Alannah(trying to explain the concept of credit cards): "Mandy, you borrow the money from the credit card company and then have to give it back, plus even more money called interest."

Mandy: "Huh????"

Alannah: "Well, Mandy, you know what an I.O.U is?"

Mandy: "Vowels?"

Mandy on dining choices

Mandy: "Momma? When will there be another event with cotton candy?"

Me: "I don't know, baby. Maybe the carnival?"

Mandy: "I think everyone would be happier if there was ALWAYS cotton candy."

Mandy on differences

Mandy: "Momma, butterflies are are so pretty."

Me: "Yes, baby, they are."

Mandy: "If all the butterflies were exactly the same, I don't think they would be as pretty. Do you?"

Me: "No. No, baby, I don't think they would be as pretty at all."

***********************************************************************************
Really, isn't the answer to most of the worlds problems somewhere in those three conversations?

Love to all~

Some good old fashioned family summer fun

2009-05-31T05:12:00.000-07:00

We continue to be amazed and overwhelmed by the love shown to our little girl and to our family. A few of our wonderful neighbors are putting on a carnival that promises to be a fantastic day. I mean come on, pony rides? The Lightning Girls? A DJ? Bouncy Houses and a raffle? What's not to love?!

We hope to see you there!!

Old English

2009-05-29T18:54:00.000-07:00

As part of the Great Bedroom Flood of '09, the insurance company decided that our furniture needed to go.

I was glad someone else finally agreed with me. And even better, that they were going to pay for it.

My first instinct was sweet, gimme your check, I will keep my crappy furniture and we will call it even. Ok? No? Whaddya mean no?

Seems the insurance company is onto people like me ... they send a salvage company to come get your old stuff, thus forcing me to go on a hunt for new stuff.

Here's the thing. I don't like new stuff. I like old stuff. Well, not MY old stuff, someone elses old stuff from long ago.

So, I found the most amazing, breathtaking bedroom set from the late 1800's brought over from England that made me swoon. It was well under my insurance company appointed budget and came home to live with me.

I love it!!!! It makes my heart all gushy everytime I think about someone else opening the drawer a hundred years ago. I love the old oak with it's amazing inlay work and love to think about the man who toiled over creating it. I love, love, love it.

Until....

One of the pieces was a nightstand, known in its former life as a chamber pot stand.

I explained to Zachary what it was.

He looks at me like I have two heads.

He opens the cabinet door.

He sticks his head in.

He sniffs.

He looks at me and says, "Funny, it doesn't SMELL like old English poop."

I still love it, but, he may have sullied that piece for me just a little. Just sayin'.

Love to all~

A dream is a wish your heart makes....

2009-05-21T05:37:00.000-07:00

Alannah: "So, Momma, I had the strangest dream last night."

"Yea? What's that?"

Vivid, strange dreams in our house are not all that uncommon. When I was a kid, I once had a nightmare about an escaped tiger that lasted for days, literally. I would go to bed and it would pick up where it left off the night before. It was my own personal hellish "As The Zoo Turns."

As an adult, I always had very vivid dreams that I was pregnant before I had any medical expertise, or even a pee stick to back it up.

And much to my poor husbands chagrin, I have had incredibly vivid dreams in which he has done something wrong....didn't pick up milk at the store, quit his job to chase his dream of becoming a the worlds first combination rock star/monk, got a "belly button massage" from a young woman who made a living in a way that her parents were probably less than thrilled with. Now, I have no earthly idea what the heck a belly button massage is, nor did I witness it in the dream, but lemme tell you, I was one irrationally, ticked off wife when I woke up. As I recall, I threw a pillow at him(which he totally had coming) and made him apologize(which I totally deserved). And because he is the best, (and totally knows what kind of crazy he is married to) he ducked the pillow, gave a semi heartfelt apology and then went back to sleep.

Alannah has inherited the funky dream gene.

"What was the dream about, Bear?

"Well, I came home from school and you were here, in the back yard I mean, with a bunch of friends.... Miss Anissa, Miss Cindy, Mrs Firios....a bunch of your girlfriends were there."

"Saweet! Sounds like a great dream, though I gotta say, not particularly strange."

"Well, see here's the strange part. With you and all your girlfriends, there was a steel drum band. And waiters. And they were serving margaritas. And there was a guy grilling stuff."

Meanwhile, last night, I had a stress dream about balancing the checkbook while in pilates class, suddenly realizing I was late to pick up the kids from school and frantically sprinting out of the Y, clad only in my pilates mat.

Seriously.

Not fair!

Alannah's strange dream so kicks my not-near-as-strange-as-I-would-hope dreams Uranus.
**************************

Chemo was uneventful yesterday. Mandy's counts were good and thankfully, she is feeling better this morning than she was this time last week.

Love to all~

Star Student

2009-05-17T16:27:00.000-07:00

As a general rule of thumb, Mandy will show up for anything that calls her a star. So when she found out that she was Star Student this week, and that even better she got to bring in whatever she wanted to share with the class...pictures, toys, dust bunnies from under her bed(not that there are any, but ya know, if there were, whatever.

So, Monday morning I trudged into school carrying a trash bag worth of stuff. We had pictures, videos, a Lightning pennant, stuffed animals, even a caricature of her with Zachary and Alannah. Seriously, we were in need of one of those Grand canyon donkeys to haul all her treasures in for us. Due to my brut strength, I hauled it all in, with only minimal need for a post star student adjustment from my friendly neighborhood chiropractor.

Once we had relocated the entire contents of her bedroom to her classroom the design could begin. She pinned stuff on the bulletin board, arranged stuff on the shelf, repinned, rearranged until it was just right.

Finally perfection was achieved and I am told minimal redesigning was required through the week.

Friday morning, I was instructed, numerous times to show up with Oreos and juice boxes at 10 am so she could present her star student stuff and I could throw sugar in both solid and liquid form at the hungry mass of 2nd graders.

And that? Right there? Is where it all went wrong.

Very, very wrong.

I walked in...schlepping two boxes of Capri Suns, four sleeves of Oreos and my purse. I dropped one sleeve of Oreos in transit and darn near lost a box of juice, but i made it to the classroom with everything relatively intact.

I walk into classroom. My sweet daughter, stands up and waves. Awwwwww ,I love her. She is so sweet! All the other 2nd graders are equally thrilled to see me. So cute!

Oh. Wait. I have cookies. No one is happy to see me. They are happy to see my cookies. And my juice. But mostly my cookies.

Whatever. I can pretend.

As I walk past a table my purse knocks over a shoebox.

Oh, crap.

It is not a shoe box at all...it was a diorama. A space diorama. That some hard working 2nd grader had undoubtedly spent hours on. It crashes to the floor with all the destructive drama of being sucked into a black hole.

I, realizing what travesty I have committed, turn around and gasp. I look down and see a planet in ruins...not in the Al Gore way, more in the Star Trek way and am horrified.

"Momma!!! You broke Uranus!!"

Um, excuse me? I did what? To what? Cause frankly? That sounds painful.

My beautiful, girly daughter shouts again, just in case, people three zipcodes over didn't hear it the first time.

"Momma!! You killed Uranus!!"

The teacher, laughs so hard that she feels the need to leave the room to go tell the teacher next door about my broken...um, posterior.

I laugh so hard that I look like I am crying from the pain of my broken....youknowwhat.

Mercifully, the owner and creator of the diorama forgave me. Cause, even more mercifully I came armed the the greatest way to achieve forgiveness of a child. Cookies and juice. We fixed his Uranus display, ate and drank and were merry and all was right in the solar system.

And my broken parts will heal. And I am told, Mandy has achieved the funniest Star Student of the year, thankyouverymuch. Oh, yea baby. Cause, that's how we roll.

Love to all~

My girls...

2009-05-14T21:22:00.000-07:00

Alannah is an amazing young woman. Truly. She makes me proud every single day.

Why just this week...

She was awarded Most Outstanding Freshman in her performing arts high school orchestra. 'Cause she has got the mad skillz on the viola. So proud of her, we are.

This week... one of her photographs of historic Ybor City was on exhibit at a city library. She wrote an amazing essay to go with it. 'Cause again...did I mention? She has some serious talent, that one. Yup, one proud momma, I am.

And then....this week.... she jumped into our little pool(that she has swam in roughly 9.3 bazillion times over the last 5 years), pushed off the wall and swam head first, at Michael Phelps speed into the opposing wall.

Her eyes were open, people. So she could see.

She had on goggles. So not only could she see, but, she could see clearly.

And yet?

She hit so hard that she darn near knocked herself out. She has a huge bruise, atop an even huger knot. She hit so hard that the hair was ripped out at the point of impact. She is 100% fine, mind you. Hence my freedom now to mock her, just a little. She was more than a little annoyed when I woke her up at 2AM and made her tell me her name and address and birthdate just to be certain there was no head injury.

Thankfully, there wasn't. Just the semi permanent tatoo of our pool surface on her forehead.

That's my girl...taking klutzy to a whole new level, one bruise at a time.

And that, boys and girls? Is why you are never, ever, never, ever, never, never allowed to swim by yourself. Got it?

Chemo went well this week. Mandy had a tough day after, with more tummy issues than she has had in a while and lots of fatigue. But, in true Mandy fashion she smiled and pushed her way through it.

It truly is a gift to be these three kids mom. I am blessed beyond measure.

Love to all~

I don't have a note from my Mom to excuse my absence

2009-05-11T20:12:00.000-07:00

When I was in high school, I had a nasty tendency to be late. A lot. Not a lot has changed. I am perpetually late. Usually about 15 minutes. Those who know me well know to lie to me about what time I am expected to arrive somewhere. You need me there at 4:30, tell me 4. I can almost guarantee I will be there by 4:30.

As an adult, I have a canned, though sincere, series of reasons why I am late. Those reasons usually involve traffic or kids or, occasionally, dogs. I am always sincerely apologetic and truly despise my tendency to be tardy. But as an adult, that is all the justification that is required of me.

My tardy ways started long ago. And more justification was demanded of me back in the day. In the interest of efficiency, I would write a note, on behalf of my mother, signed by "mother", explaining numerous, creative and varied reasons for my chronic tardiness.

Mercifully, journalism was my first period class my junior and senior year. Excuses were easy, I was interviewing this person, chasing that story ... whatever I could come up with. Either way, I successfully explained away my frequent tardies and semi-frequent absences with help from my "mother's" notes. She was very helpful, my "mother."

Right up until the point at which I was legitimately absent. I was sick. My mom actually wrote a note. I turned it in, feeling all official and honorable and stuff. And then it happened. Busted. HARD.

Why? Well, cause ya see, the office had numerous notes on file from my "mother", signed by my "mother" and that day I turned one in and that looked completely different from the other eleventy bazillion notes. Whoops.

I kinda feel like I owe y'all a note explaining my prolonged absence. So, here ya go...

"To Whom it May Concern;

Please excuse Natalie's tardiness in posting an update. You see, she has had stuff. There was a small flood, mold and drywall dust. There was also a floor rip out and replacement, and the air conditioning died to the tune of several thousand dollars. All of this resulted in a 6 week long displacement from their home.

"At one point I am relatively certain her house starting throwing light fixtures at her, but she doesn't like to talk about that. Suffice it to say there was a pop, and a thud followed by the sound of glass shattering on the tile floor. They are still in need of a new roof. If you have an extra one of those lying around, please feel free to send it home with her.

"Amidst all of this fun, Mandy had all the usual chemo appointments and an MRI that showed mostly good news, but left some questions unanswered.

"Oh, and? She got a traffic ticket, had a dentist appointment, overslept, had a bad hair day and I am pretty sure the dog ate her homework.

"This all may or may not have led to her polishing off a bottle of Pinot Grigio before the salad even arrived. If that did happen it was not her fault. The waiter told her it was 'Wine Wednesday' and she was merely trying to be accommodating.

"However, they are back in their home now and she promises to try to do better to show up on time, or for that matter, just show up.

"She may or may not have her homework. But, she will have a bottle of Pinot Grigio. I will send a Doctor's note for this under separate cover.

"Thank you for your understanding in this matter.

"All the best,
Natalie's mother"

You can feel free to place your bets on the validity of that signature of my mother.

Love to all~

Monday, Monday

2009-04-20T20:01:00.000-07:00

Mandy can complain about a lot of things.

"Why won't you let me wear make-up to the dance?"

"Zachary looked at me!"

"Why is my favorite pink dress not clean?"

"Zachary is breathing too loud!!"

"Zachary looked at me again!!!"

But, there are lots more thing she never complains about. She never complains about having to go to clinic. She never complains about brain tumors or NF or chemo. Most of all, she never, ever complains about not feeling good. Even when she doesn't feel good, she will bull her way through it and say she feels fine, thankyouverymuch. She is made of some really tough stuff, lemme tell ya.

So, you can imagine my concern as she stood in front of me this morning, wobbly on her feet, complaining of a severe headache and nausea.

We talked about her headache, what kind of hurt, how bad on a scale of 1-10, where it hurt, etc.

"It's an 8, Momma."

She struggled to keep her eyes open in the car as we took Zachary to school. We came home and I carried her in and laid her back in bed and lay down beside her. I waited for clinic to turn on the phones at 9.

By 9, she was feeling much better, though far from 100%.

By 11:15, when we arrived at clinic she was running at about 95% and would only tell you her head hurt if you asked. A neuro exam performed by the doc was okay. So we left with instructions to keep a close eye on symptoms and call if they returned the next morning.

By 3 she was perfectly fine and said her head was hurting at the level of about a 2 or 3.

With brain tumors, there can be morning headaches and nausea associated with hydrocephalus or pressure. Or, she could just have a touch of something. Or have been tired.

She was mostly fine for the rest of the day and hopefully tomorrow morning will prove that this morning was a flukey series of events to make my blood run cold.

Love to all~

A timeline in three time zones

2009-04-19T18:26:00.001-07:00

Had any one of us been delayed one solitary hour on Saturday, it would have all fallen apart.

8am(Mountain time)- Ronnie gets on a plane in Edmonton, Alberta(Canada for the geographically impaired among us, such as myself)

9am(Eastern time)- having slept late, cause frankly we were all exhausted and deserved it, kids and I start our day with Cap'n Crunch, Kix and coffee

9:30am(Eastern) start throwing various children in various showers and yelling about how "I can't change the clock, people, you have got to get a move on!"

11:30am(Eastern)- launch into, "I am serious!! We have got to go!" lecture

12:00(Eastern)- get children out the door, making sure Zachary has his script, all his costumes and has brushed his teeth in the last 24 hours.

1pm(Central time)- Ronnie changes planes in Minneapolis

1pm(Eastern) The girls and I start watching the best High School Musical 2 production, ever. Zachary played Ryan and was great!! He is such a hoot on stage and loves to make people laugh. We loved it and I was so darned proud I couldn't stand it!

The whole cast

My favorite scene, he and Sharpay(his script sister) spying on Troy and Gabriella. He was so funny!

1pm(Central)-Ronnie boards plane in Minneapolis heading to Tampa

3pm(Eastern)- HSM2 wraps up it's matinee performance and we begin a 30 minute picture taking extravaganza

3:30pm(Eastern)- Kids and I leave first performance and head over to house to check on roof work being done. Instruct kids they are not to set foot in the house due to mold remediation being in full swing. I consider pouring myself a stiff drink when I am told again just how badly we need to think about putting on a whole new roof.

3:40pm(Eastern)- I am really hoping Ronnie is somewhere in the same time zone by this point. Reluctantly do NOT pour myself stiff drink, though I totally deserve it. Herd children out of front yard and back into car.

4:00 pm- Arrive back at friends house which has become our temporary address.

4:15pm- Feed children leftover pizza, cause I am all about healthy well balanced meals today...Cap'n Crunch and pizza. Yea, I am so mother of the year, it ain't even funny.

4:30- Start back in on, "I can't change the clock, people, ya gotta HURRY!!"

4:40- Throw Mandy in bathtub.

4:44- Pull Mandy from tub and dry and curl her hair.

4:47- Spend 10 minutes trying to convince Mandy that she does NOT need lady-of-the-night-esque makeup for the Daddy/Daughter dance.

4:57- Am worn down and out of time and give in to sheer lip gloss and translucent powder and hope that I have successfully convinced her that both invisible make-ups are noticeable and gorgeous.

4:59- Shoot a few pictures of Mandy, dressed and ready for the Daddy/Daughter dance, while hollering across temporary house to Zachary to get on his shoes and brush his teeth again.

5:01- Tell Alannah that her number one goal until Ronnie hopefully arrives for Mandy is to keep her out of my makeup bag.

5:02- Pack Zachary back into car to head back to evening performance of HSM2.

5:03- Am THRILLED when cell phone rings with Ronnie's name displayed. "I am on the ground," he says, "and will be there shortly." ROCK ON!!!

6:00- HSM2 second performance starts. Ronnie arrives and whisks Mandy away to the ball.

6:26- Arrive at Daddy/Daughter dance where much dancing and cavorting with her friends ensued.

8:00- HSM2 evening performance wraps up and was awesome!! Cast party with pizza, cookies, soda and all sorts of giggling, autographing, eating mania begins.

8:30- Daddy/Daughter dance wraps up and Daddy brings a completely exhausted daughter back home.

8:45- issue "time to go soon, buddy" to Zachary

9:00- arrive home with exhausted, but throughly convinced he wants to be an actor when he grows up, boy child

9:15 Zachary in bed. Mandy in bed. Alannah, Ronnie and I share some Chinese food.

11pm- crash into bed

Sunday we do a whole lot of nothing. Except Alannah.

Who went to the opera with her friend. Before getting her homework done. Which prompted this statement from Ronnie, "If your homework wasn't done you should have maybe thought twice about going out and having fun at the opera."

Which may very well be the goofiest moment of the whole darn crazy weekend.

Love to all~

Phone home

2009-04-17T20:36:00.000-07:00

So, a priest, a rabbi and a monk all walk into a bar....

That is how my morning started.

Expect it wasn't a bar. It was my house.

And it wasn't a priest and a rabbi and a monk so much as it was a mold guy, and insurance adjuster and a roofer.

And they didn't all walk into a bar, they all walked into my house. Well, except one. Cause he couldn't make it today. But a priest and a rabbi and a monk were supposed to walk into a bar, but the monk got delayed due to a very chatty correctional officer whose kitchen the monk is redoing....just doesn't have quite the same ring.

So, the insurance guy came back out today. And after *ahem* shall we say REITERATING how very important this was to do it right approximately eleventy bazillion times, I think we may be on the same page. He has to go back and write up a report and at some point on the third Tuesday of the month, when the wind is blowing from the East and a hawk takes flight from an oak tree and a rabbi sneezes 4 times and a butterfly in Japan flaps it's wings, we will get a check to do the repairs.

But, mold guy came and started all his fun stuff today. It looks like that scene from ET when the house is all under containment from the evil stuffed animal loving alien. It made me have an odd craving for Reese's Pieces is all I can say.

My family room....is purdy, no?

And the bedroom is stylin' too in the latest in high fashion plastic tarps and blue painters tape. It is all the rage in Paris, I hear.

And, just in case you ever wondered what was behind the iron, well, plastic, curtain. Ya gotta little of this

And a little of this

Lotsa people supposed to be showing up in the next week or two. I hear Vegas is giving 14 to 1 odds that I will get stood up at least 3 times in the next 2 weeks.

Crazy, busy weekend for the Willis'...Zachary's play is this weekend, stay tuned for pictures on that and stories as he debuts as Ryan in High School Musical 2. Mandy has a Daddy/Daughter dance this weekend. Can I get a great big , "Awwwwwwwww." Cause seriously? Little bitty girls dancing with their Daddies...just doesn't get a whole cuter/sweeter. Alannah is going to an Opera this weekend. No. Really. I'm serious. I swear. My 14yo is excited to go to an Opera. Yea...I don't know either.

And please, if you have stuff or time to donate, please consider donating to the fundraiser garage sale for Mandy's Fund:

• Volunteers are needed Friday, April 24,
for collection/sorting/pricing
• Volunteers are needed Saturday, April
25, for set up,selling and cleanup
• Donations are accepted at several places.
Call James Council, 508-3609 to sched-
ule a pick up or to select a drop off location.
• Curbisde pickup will be available Friday
afternoon after the Friday community sale.
Please call 508-3609 and state you have a
pickup and your address.

Love to all~

A string of unrelated subtopics

2009-04-15T21:16:00.000-07:00

1) There has been a drought. A bad one. For a long time. HOWEVER, I am pleased to report that because I have a hole in my roof currently (that basically affords me the fancy schmancy indoor waterfall I have always wanted) that we have single handedly guaranteed immediate rain and no doubt a swift end to the drought. Thanks you cards, flowers and chocolates are expected and appreciated, as a thank you, from all Floridians. You're welcome. Sorry to say that you can expect the deluge to stop as off Friday when the hole should be fixed and mold/water remediation start. For our next trick....locusts!

2) My ankle swelled up to look like that of a baby elephant. It didn't hurt at all, which I thought was kind of odd.So, rather than waste my time going to our family doctor(and I would first have to figure out who the heck my doctor is, so we are talking a good several hours of my life that I would never get back)I went to one of those Doc in a Box Urgent Care places. I knew they would want to shoot an xray of the ankle so it seemed like a decent one stop shopping idea. Yea. Not so much. Woman "diagnoses" me with a heart murmur that I have never had and a sprained ankle that doesn't hurt and probably dandruff and I think he said one of my arms might be shorter than the other.

I actually heard this conversation between doc and very pregnant lady with a spider bite in the cubicle next to me.

Very Pregnant Lady(sounding concerned): Dr Stupidhead, my concern is much less for me than for the baby. This bite is red and angry and hot to the touch. I am worried it is something toxic. Like say a brown recluse for example.

Quack( sounding like a quack): Oh pfft. You could not possibly have been bitten by a brown recluse! You know why? Cause they are reclusive. That's why! They won't come out and bite you!

Um, wow. So someone obviously slept through doctor class, but got herself a mocha before English class cause SOMEBODY knows her root words. Color me impressed.

3)It never ceases to amaze me, what amazing and kind people we are surrounded by. Once again, we stand awed and humbled that people would give of themselves yet again to our family. Our neighborhood is holding a benefit garage sale on April 25 to benefit Mandy's Fund at the Children's Cancer Center. Thanks to everyone who is being so kind and wonderful They need some help with the following:
• Volunteers are needed Friday, April 24,
for collection/sorting/pricing
• Volunteers are needed Saturday, April
25, for set up,selling and cleanup
• Donations are accepted at several places.
Call James Council, 508-3609 to schedule
a pick up or to select a drop off location.
• Curbside pickup will be available Friday
afternoon after the Friday community sale.
Please call 508-3609 and state you have a
pickup and your address.

Chemo went well today. Counts dropped quite a bit, but otherwise it went well.

Love to all~

The Week in Review

2009-04-05T18:46:00.000-07:00

Yeah, yeah, I know. I haven't posted in a week or so. Cut me some slack. I've had stuff. K? Thanks.

So, when we last saw the Willis family, they had a birthday, a roof leak, mold growing, impending chemo and a chest film.

Will they patch the leak? Subdue the mold? Are they doomed to a life of remodeling? Will they leap tall, mold infested buildings in a single bound?

Let's watch and see...

The best news is that we did a chest film on Mandy at clinic on Wednesday and it was normal, no evidence of anything fungal from mold inhalation. Can I get a big, fat amen for that one? Counts were great, chemo was uneventful...one more week down.

The rest of that mold stuff is just stuff...just a house. It is nothing time and money can't fix. Looks good for the insurance to be covering most of it. They all understand just how hyper-vigilant we have to be about the mold removal, so, though it is a pain in the hind quarters, it ain't nothin' but stuff and will get taken care of in due time. It is going to cost us money, and though that is a stress, there are far more important things.

That brings us to birthday madness. Zachary turned 10. I am not sure how that happened, exactly. 'Cause I am relatively certain he was a very fat 2 year old yesterday. Apparently my memory and time perception is a bit off. So let the 10 year old birthday extravaganza begin...

We took him to his favorite restaurant for lunch. To celebrate his birthday, they gave him a "beak" and had him flap his arms like a bird and run through the restaurant making crow noises.

Next stop, the Lego store in Orlando to pick out his birthday gift. 'Twas darn near heaven for my boy child. It is always a good day in Zachary-land when you leave with a Lego bag that is darn near as big as you are.

Then came the birthday party to end all birthday parties. We used points from Ronnie's extensive business travel to score a free room at the Embassy Suites hotel in Orlando. Ronnie took Zachary and three of his best buddies for a "No Girls Allowed" weekend.

There was some of this

Ok, so, maybe it was a whole lotta this

They took the party indoors after the pool closed and proceeded to test the soundproof quality of the room.

I am told eventually they all crashed, basically where they stood and sleep was achieved. I have no choice but to believe this happened.

They got up the next morning and ate their way through the all you can eat breakfast buffet at the hotel. I don't think that management could possibly have had enough bacon prepared to handle these boys...

Then it was on to the go-kart , carnival ride, video game nirvana....

There was this

and this,

this

and even some of this.

I am told it was repeated by more than one party attendee as well as the birthday boy that this was the "BEST. DAY. EVER."

No higher praise could be had! I am so thrilled Zachary had an awesome all boy, all the time party for his big 1-0! He is a great kid, totally deserving of a great day all about him! Thanks to the parents who let their kids come and make Zachary's weekend so amazing! Thanks to Ronnie for being such an amazing Dad and making the day so perfect for all of them!!

Stay tuned for the next episode of "As the Willis' Turn," where we see demolition, reconstruction and remediation.

Love to all~

HAPPY 10TH BIRTHDAY, ZACHARY

2009-03-30T20:33:00.000-07:00

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~

Enough already with the drama

2009-03-29T21:45:00.000-07:00

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~

Can we get back to you on this one later?

2009-03-18T18:08:00.000-07:00

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~

I freakin' LOVE the Irish!

2009-03-17T06:29:00.000-07:00

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~

Before and after

2009-03-16T19:35:00.000-07:00

BEFORE

DURING

AFTER

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

Love to all~

Stir crazy

2009-03-15T20:43:00.000-07:00

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)

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

Love to all~

Distract 'em with pictures

2009-03-13T18:24:00.000-07:00

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~

Unsettling Developments

2009-03-09T19:27:00.000-07:00

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~

The Search for a Name or The Diagnosis Part 2

2009-03-03T23:50:00.000-08:00

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.

The Ups and Downs of Fashion

2009-02-26T19:52:00.001-08:00

Mandy has her haute couture modeling debut coming up in a few weeks with some of the most stunning models this side of Fords Modeling Agency. Let me just say, the Sports Illustrated girls, got nothin' on these girls. The are more beautiful than any of those models and tougher than any athlete who ever graced it's pages.

The Pediatric Cancer Foundation is hosting it Fashion Funds the Cure fashion show in a few weeks. The models are oncology kids. As part of the preparation the girls all got to hang out at Saks Fifth Avenue for a few hours and pick out their outfits, get a manicure and have their makeup done.

Lemme just say, Mandy better make a bootyload of money herself, or marry really well. Cause she? Could so get used to this.

The day started with a chauffeur driven Mercedes. Mandy and I with our lovely chauffeur.

She choose about 10 different dresses to try on and struck a pose with each one. She had numerous colors of shades to go with the various outfits and one super cute pink Juicy Couture bag that had darn well better go with whatever outfit she chose, cause she loved it.

Dress number one

Dress number two

My favorite dress

The dresses just kept comin'

THE dress, but the paparazzi needed to back off and not ruin the surprise.

Somewhere, somehow, I went wrong though. I failed as a mom, as a role model, as a woman, even. I will forever hang my head in shame. I will, from that day forward, walk a little slower, hold my shoulders a little less firmly, speak a little quieter. I tried. I did. I tried to teach her the ways of the world. Lead her down the right path. But, alas, it was all for naught. Because when it came right down to it. I failed my little girl. When she was given unlimited access to all the shiny, happy joy and goodness that Saks has to offer, the thing she was most excited about, the thing that made her the most giddy was being able to do this.

All day.

Over and over and over.

She loved the clothes,

she loved the makeover,

she even loved the mannequins.

But, more than anything, above all else, she loved the escalator.

I am indeed a failure. I promise to try to do better. Oh and? She put on a whole lot of purple sparkly eyeshadow right before we walked out the door. *Sigh* The fashion force? It ain't so strong with that one.

But, my purple sparkly eyeshadow wearing, escalator riding, goofy girl had a great time. Thanks, Amanda and Lindsey at Pediatric Cancer Foundation for making these girls feel like the superstars they are.

Love to all~

I would like to thank the Academy

2009-02-22T05:59:00.000-08:00

The fundraiser was amazing and a great success! I have simply got to do a few shout outs, so please, bear with me.

Anissa- what else is there to say, 'cept you rock. HARD! You poured so much into this and I can't thank you enough!

Liza- Girl, you are a basket making fool! Thanks so much and so glad that knife got to go home with you!!

Diane, Michele, Julie, Sandy- you guys were amazing, driving from over an hour away to help out that day and bringing more loot! Love ya all!

Leanna- "Hey, I forgot something... Can you print this for me, please?" Hehehehhe.... You did so much and managed to not strangle me! You deserve a plaque!

James, Janet, Lithia Springs Elementary and PTA- thank you so much for reaching out to our daughter and our family in such a special way. We are touched and humbled by your kindness.

Sherry- You know I got nothin' but love for you! Thank you for talking me off the ledge and for helping out so much that morning.

To every person and business who donated, to every person who bought a raffle ticket, entered the silent auction, said a kind word or gave a hug...THANK YOU!!! Your love and support provide more strength than I could ever put into words.

I am certain they are playing my "wrap it up music" by now, so I will exit stage left, but not before one more teary eyed, heart felt, THANK YOU!

My second post is up over at 5 Minutes for Special Needs, please go take a look at Compassion and let me know what you think.

Love to all~

Chemo and Fundraiser

2009-02-20T13:59:00.001-08:00

I am up to my armpits in Mandy's Fundraiser this week. My two buddies, Anissa and Liza spent 5.5 hours helping to assemble baskets one night this week. There are some amazing raffle and auction items!! I sobbed like a two year old when I saw it all put together....the kindness people have shown to us was just absolutely overwhelming. We hope to see you there tomorrow, Saturday, 2/21 from 10-2 at Lithia Springs Elementary in Valrico! Thanks to one and all who have worked so hard to put this together!

Chemo was fine this week. A few funky neuro-ish symptoms, but overall, she is doing great. It never ceases to amaze me the happiness and spirit with which she bounces into chemo. You would think she was going to a play date. That tells you something about the staff there. Love them to itty, bitty, teeny, tiny bits!

Hope to see you all tomorrow! Lots of pictures and updates from a very full weekend, soon, I promise.

Love to all~

Alrighty, we got prizes and bling and all sorts of things

2009-02-16T19:57:00.000-08:00

We have been so touched and humbled and blessed to have an amazing fundraiser being put on to benefit Mandy's Fund. Let me tell you, overwhelmed doesn't even begin to describe the emotions we feel as the raffle and auction items keep rolling in. It promises to be an amazing day. One for which, I promise to bring several boxes of tissues as I anticipate I will need them as I get all teary and runny nosed and weepy and overwhelmed out in public rather than in the privacy and comfort of my own home.

When I post pictures of the day, Mandy will be the cute little blonde. I will be the one with the red face, swollen eyes, runny nose and rivers of mascara streaming down my face. Sounds downright purty, no?

It is so hard for us to be on the receiving end of something like this. I have been on the other end, many times for many causes. But this? It's hard. It is humbling to be given this kind of support and love. I have said it before and it will always be true, we will spend the rest of our lives trying to pay forward the kindness, love and generosity shown to our family and no matter what we do or for how long we do it, we will still be in debt.

I hope we will see some of you out at Lithia Springs Elementary this Saturday 2/21 from 10am-2pm. Let me just say....we have some AMAZING silent auction and raffle prizes.

Just a few of the silent auction biggies:

Two tickets to any Tampa Bay Buccaneers home football game in the 2009-10 season AND six VIP all date passes to Bucs training camp. My husband COVETS this prize, lemme tell ya.

A four pack of Tampa Bay Lightning Hockey tickets for the March 17 game against the Toronto Maple Leaves AND a $50 gift certificate to The Columbia Restaurant. You even get Lightning tshirts with this one, ya'll! ROCK ON!!

If you won't be able to attend, but would like to bid on either of these items, please feel free to email me and let me know your bid and I will put it down for you!

We also wanted to offer a few of the raffle items for advance ticket purchase. We have:

$100 gift certificate basket that includes a $50 Target gift card, a $25 Old Navy card and a $25 Starbucks card. Ok, seriously, this? Is just about nirvana!

A brand-spanking-new iPod shuffle. What's not to love?!

If you would like to buy raffle tickets for these they are $1/each and can be paid Paypal style(pursuitgoldens@gmail.com)make sure to note which item you want to be entered in or snail mailed. Contact me if you need that address.

If you would like to participate in any of these we need to receive your entry by Friday 2/20 at noon.

Ok, and last but not least, the bling, baby!!!

We have these absolutely gorgeous black pearl earrings

Really? Are those not delicious??!! We have the appraisal that values these stunning earbobs at $975. They are available as an online only raffle at my friend, Anissa's site. Go to www.hope4peyton.org and check it out, if you are interested.

In non-fundraiser news, my boy child had a huge victory in his budding acting career today! Zachary auditioned for the upcoming play High School Musical 2 at his acting class(the class was a Christmas gift from Grandpa Bill) last week. He found out tonight he got the second lead, Ryan! He is super excited and so proud!! I love to watch him have so much fun and work so hard at something. Just so darned proud of him! Plus? I get to play Crazy Stage Mom again and I have so much fun with that role!

He asked me tonight, "How can I be a child actor, Momma?"

"Well, dude, let's see...you needed to have started a cocaine addiction by age 7 and been dating your 20 year old costar by age 9. Looks like you have aged out of child star status, buddy. Gonna have to wait to be a starving actor until your 20's. Sorry 'bout that."

He will be 10 next month, so dog-gone-it, he has aged out of child actor possibilities. Did you pick up on my oh-so-subtle sarcasm there?

I did, however, take a good 30 minutes to explain the finer points of acceptance speeches and that "I would like to thank my Momma" always comes before "I would like to thank the Academy."

Think he will remember that in about 20 years?

Yea.

Me neither.

A million thanks to all of you who are supporting the fundraiser and loving Mandy and all of us. It means more than any amount of words could ever begin to express.

Love to all~

Raffles, auctions and fundraisers, oh my!

2009-02-15T21:29:00.000-08:00

All is well here. No more complaints of headaches, which is good. Counts were fine and chemo was uneventful this week.

I am up to my eyeballs getting ready for the fundraiser this weekend. Watch tomorrow when there will be a few online raffle items going up, including a pair of crazy beautiful pearl earrings appraised at just under $1000!

Thia is the lamest of lame posts...but good stuff tomorrow, scouts honor!

Love to all~

Welcome to my crazy

2009-02-09T19:30:00.000-08:00

People get headaches.

Shocker, I know. This is certainly not a newly touted medical discovery. This ground breaking information is not soon to be published in the Journal of the American Medical Association. It is not even as timely as a cure for polio.

People get headaches. JUST headaches.

It's okay.

It does not necessarily mean anything other than their head, well, aches. No bigger evil lurking in the wings, no monsters under the bed ready to leap out at you, no boogie men.

Nope, people really do just get headaches.

But, I gotta tell you, when Mandy gets out of her bed tonight and comes out of her room to tell me that, "Every time I lay down my head hurts" it is a one way ticket on the express train to Crazyville for me.

The most likely scenario is that she has a headache. Plain and simple. Just a headache.

It could be allergies.

It could be a cold.

It could be that she listens to Laurie Berkner and Carrie Underwood at full volume.

It could be....lots of things.

It's probably nothing.

But, does it invite all those nasty thoughts to, please, break down the bolted door and bully their way into my the very front of my head?

Um, yea, it does.

My daughter has a headache.

And that? Is the stuff my nightmares are made of.

Love to all~

Weekend, Cliff Notes style

2009-02-07T22:38:00.000-08:00

I got to do my very first guest post ever people! Makes me feel all grown up, like. It was more than a little intimidating to know that I was writing for more than just you guys.

Please, go read, please offer some feedback! No rotten tomato throwing allowed, please. I am old and my reflexes are not great and I fear I could not duck fast enough! Anyway, here ya go. Be gentle!
The Diagnosis at 5 Minutes for Special Needs

Mandy had a funky day today. She was complaining of being cold, very tired and some short term memory issues. Oh yea, I can go all kinds of crazy with those things. In all honesty, she is tired. She has been in chemo for darn near a year. Yea, she's tired. There is no blood count reason for it, but she is entitled to some tired.

Alannah is being quite the social butterfly this weekend...birthday party, movies, etc. Apparently there was an attractive young man at the birthday party...I really gotta get on signing her up for nun school.

Zachary is up to his eyeballs in studying for his upcoming audition for High School Musical 2 play. He has been struggling with breaking out in hives the last two days. Poor guy! Think I can get the makers of Benadryl to send me a free case to set next to our Duraflames?

Ronnie left us today for the frigid land of Denmark. I think he may have to wear every single article of clothing he owns all at one time to try to stay warm.

That's all I got ya'll.

Love to all~

Jessica Rose Kohut 12/31/2002 - 2/6/2009

2009-02-06T16:45:00.000-08:00

The gates of heaven opened wide this morning for a new brave and beautiful angel. Jess, you were and always will be very loved.

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts". The little soul was confused. "What do you mean", she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.

God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.

Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased."

Believing in God's promises . . .
" . . .For I am the LORD who heals you."
Exodus 15:26

Love to all~

Will work for Duraflames

2009-02-05T19:46:00.000-08:00

I can admit it. I am easily amused. Truly. I have been known to say incredibly stupid stuff and crack myself up to the point of spewing beverages out my nose.

I know.

My parents is sooooooo proud of me.

That being said? The folks at Duraflame? THEY ARE FUNNY PEOPLE!!! Well, at least Caroline from the marketing department is funny. Cause, Caroline from the marketing department? She cracked me the heck up!!!

If you are a frequent reader you might remember The Great Duraflame Incident of 2009. Go ahead, click on that link. Relive my epic failure of a Norman Rockwell moment.

Ah yes, my kids are still traumatized, as are my dogs. Hey, what can I say? If I am going to do something, I am going to do it with panache, baby.

So a few days ago was pretty much a crummy day on a whole lot of levels.

Spilled my mocha right after I made it and didn't have time to make another one.
Tripped over the dog and hurt my toe. AGAIN.
Late getting kids to school.
Bad economy hit home in a very tangible way.
Put dinner in the crock pot. 8 hours later realized I did not turn it on.
Oh? And? An ant invasion worthy of a guest spot on the Twilight Zone, probably going for the rotting, never cooked attempt at dinner in the crockpot.

Yea, cause I am an extra special kind of smart.

It was a rough day, people.

And then I am sitting outside youth orchestra waiting for Alannah when my little-flashing-red-light-of-you-have-an-email love of my Blackberry goes off.

And then I read the only thing that managed to make me laugh so far that day:

Dear Mrs. Willis,

We recently ran across your January 16th website blog “Our Duraflame had too much flame and not enough dura”, and are relieved to hear that you conquered the thingamigig in the end so you could enjoy your Duraflame fire. We would like to send you a coupon for a free case of firelogs, but you must promise us you will check the thingamigig before lighting the fire next time. Also, we don’t recommend roasting marshmallows or any food items over the log.

Please send us your mailing address and we’ll send you the coupon. All our best to you and your family.

Best Regards,

Caroline *her last name removed to protect the innocent*

Caroline *again with the last name removal thing*
Duraflame Marketing

So, Duraflame marketing folks and the very funny Caroline, here I stand, with my left hand on my keyboard and my right hand on my heart, "I do solemnly swear to be aware of proper thingamigig placement prior to lighting my Duraflame. I promise to not grab the stupid thingamigig handle and relocate it when it is 145 degrees cause it is over your beautifully burning fire, traumatize my kids, make my neighbors dogs bark or scare cows into midnight mooing. I do hereby swear to always light it only on the arrows and eat my marshmallows untoasted."

Does this mean I score my case of Duraflames now?

---

In other news, Mandy's fundraiser is coming along nicely. My friend Anissa over at www.hope4peyton.org has donned her Super-Fundraising-Hero cape and has come up with a fun way of donating and advertising your blog or favorite website. Go take a peek at her site. We are still looking for raffle and auction donations. In the next week or so, we are even going to put up a list of items and take online orders and payments for raffle tickets and maximum bids for auction items. That's right, we will stalk your favorite items for you while you sit at home basking in the glow of your Duraflame fire. Whatcha think of them apples?

Chemo went well this week. Mandy's counts were lowish, but not alarmingly so by any means. Her ANC was down to 970, but everything else was in normal range. Her fatigue is improving, but still there. I suspect it is just an accumulation of chemo. She has had chemo every single week for almost 5 months now. That is a whole lotta benevolent poison to pump into one little body.

Love to all~

Fundraiser for Mandy

2009-02-02T20:50:00.000-08:00

We have been so blessed to have been surrounded by wonderful friends throughout Mandy's fight. I truly don't know how we would get through this without the love and kindness we have been shown. We will spend the rest of our lives trying to pay forward all the kindness and even then? We will still be in debt.

These same friends are stepping up to the plate again and are doing a fundraiser in conjunction with the Family Fun Fair at Lithia Springs Elementary in Valrico, FL on 2/21/09 from 10am-2pm.

The Family Fun fair is a great family day with all sorts of carnival games and fun activities for the family. The PTA and administration have been so kind as to give Mandy a booth to sell these fun little gizmos for $5/each.

We are also gathering items for a raffle/auction. All proceeds from the booth will be going to Mandy's Fund.

We would love to see you there. If you have anything you would like to donate for the fundraiser, it would be greatly appreciated. We are truly humbled and honored to have such wonderful people surrounding us, loving us, praying for us and holding us up.

Please feel free to email me at pursuitgoldens@gmail.com if you would like to help out.

Thank you from the bottom of our hearts.

Love to all~

Diagnosis by Song

2009-01-30T20:40:00.000-08:00

Several people have asked me lately how Mandy was diagnosed.

The answer to that question is a question. Which diagnosis?

All of the subsequent diagnoses started with the first one. It all started with a news story we didn't read about a song we had rarely heard.

* * *

It was Oct. 23, 2001, our baby girl's first birthday. She and I were at the pediatrician's office for her well-baby check up.

She was a beautiful and healthy little girl. Big blue eyes, no hair to speak of, but what she had was platinum blonde. And a dimple that made my heart melt every time she smiled.

I had asked every time we had been in that year about these odd birthmarks that just kept showing up. They were an odd color, the color of coffee with cream, some large, some small.

But, she was healthy, growing well, hitting all of her milestones. So, I was comfortable with the answer I always got: "They are just birthmarks."

So I asked again, just to hear them say "They are just birthmarks" one more time. What happened next was going to change things forever.

* * *

On October 7, 2001, an article ran in The Dallas Morning News. A kid country singer named Billy Gilman was to perform later that week at the Texas State Fair. His radio hit at the time was a song called "Elisabeth," about a girl who was facing some serious medical struggles.

Elisabeth was a real person; she was 21, she lived in the Dallas area, and her aunt had written the song.

Elisabeth was going to meet the 13-year-old country singer at the fair. The article noted that the singer was very excited to meet Elisabeth for the first time. "That's so weird to me," she said. "I mean, he's the big-time star. It should be the other way around."

The article went on to describe Elisabeth's illness, an illness with which she had been diagnosed as a baby and had now forced her to interrupt her college career.

I didn't read the story. Ronnie worked at the Morning News at the time; it's quite possible that he had produced the page on which the story ran. He didn't see the story, or if he did, it didn't register with him. We weren't huge Billy Gilman fans, and we had no plans to go to the State Fair that year.

Our pediatrician, however, had read the story.

* * *

"Doctor, she still keeps getting more of these birthmarks that I have asked about before. Is it anything we should be concerned about?"

I didn't recognize the face at the time -- that face that doctors make when they are going to have to tell you something you will not want to hear.

She looked at me and said, "You know what? Let me go get one of my partners. I will be right back."

Well, that was kind of odd. So I waited, thinking we were at most dealing some dermatology issue.

The pediatrician came back with one of her partners.

He made the same face. Alarm bells started going off in my head.

He said, "Let me go get Dr Head-of-the-practice. I will be right back."

Oh God. Something is wrong. The alarm bells in my head were likely audible to all by now.

Dr Head-of-the-practice walked in. He took off her diaper, he lifted up her arms, looked at her armpits and looked at me and said, "I think your daughter has cbwfgurigfsbcgducgwfbwejfv and we need to do an MRI to look for brain tumors."

And then he left the room.

That was it.

And just like that, I couldn't breathe. I had never heard the name of whatever disease he had just said.

The original pediatrician sat down with me. I remember looking at her and saying, "I don't understand. I didn't understand the word he said. Please write it down for me."

We talked for a few more minutes and she handed me a piece of paper with the word neurofibromatosis written on it.

I remember walking to the car with her. I sat down in the driver's seat and held her on my lap for I don't know how long before I put her in her car seat.

I called Ronnie at work and told him what just happened. I read him the big word off the piece of paper. I spelled it for him so he could punch it into Google. N-e-u-r-o-f-i-b-r-o-m-a-t-o-s-i-s.

One of the first hits from the search results: A story from The Dallas Morning News from two weeks before. A story about the Texas State Fair, and Billy Gilman, and Elisabeth. The second paragraph:

She's had neurofibromatosis, a genetic disorder that causes small, mostly benign growths to form on her nerves, since she was 2 years old.

* * *

I remember driving home from the hospital after the MRI thinking if I could just drive far enough away, we could somehow outrun what they were saying.

That day began this journey. Everything on that first MRI was fine. "Unremarkable," I think, was the official word they used.

It was followed by DNA analysis that confirmed she did indeed have neurofibromatosis type 1. And then many more scans, some more remarkable than others, but none more remarkable than the one from Feb. 18 of last year.

MUSGO

2009-01-27T18:54:00.001-08:00

I have an Aunt who serves Musgo for dinner every so often. And though it sounds like it might be a German delicacy, it is actually something far less exotic. Truly it is combination of whatever leftovers are, well, leftover. Leftovers, after all, MUST GO. Hence the name.

So, rather than admit I have not had time to post and have therefore let a lot of stuff go unsaid, I choose to call this a Musgo post...an odd combination of all the leftovers I haven't posted in the last several days. Think of it like a healthy dinner of lasagna, with creamed peas, fruit salad, and blueberry muffins. An odd combo certainly, but it will hopefully fill you up anyway.

So, here's your lasagna:
The kids and I got to participate with our good buddies in the Gasparilla Parade. This is a crazy Tampa tradition celebrating the fictitious invasion of Tampa Bay by the pirate, Gaspar. Sounds fun right? Well, it is. Especially when you are doing it in the name of a great charity like the Pediatric Cancer Foundation.

Allll good, all the time. Right?

Riiiight.

Right up until you are told the dress code for the event.

That would be corsets for the momma's...for those of you taking notes. Oh, and boas. Cause really? If you are going to wear a corset, why not drape a boa around it?

Mandy dressed as a princess, cause well, she's Mandy.

Zachary was a pirate. Aaarrggghhh!

And Alannah? Oh yea.....she was way FIRED UP about wearing a corset. And all her friends were alllll jealous of her corset wearing weekend. Who knew corsets were so popular with the teenage set?

Her mean old momma made her wear a shirt underneath it, because...HELLO!? It's a corset! And she's 14. And frankly, that combo is significantly less palatable than lasagna and creamed peas.

We had a great time, threw a ton of beads, and other than a couple of blisters from walking in high heel pirate boots, everyone had a ball! Thanks to Les Belles Femmes Krewe for having us!!

Now on to side dishes of creamed peas and fruit salad:

There is a fundraiser being planned for Mandy's Fund, which is housed at the Children's Cancer Center. The wonderful people at Lithia Springs Elementary are putting together a fund raising booth for Mandy in conjunction with their Family Fun Fair. We will be selling a fun little gadget for the kiddos, that have been graciously donated. More info will follow soon. But for right now, save the date, 2/21, and we hope to see you there. Thanks so much to LSES PTA, we love you guys!!!

And for the blueberry muffins....Zachary has been fighting a fever for the past few days. Mandy is still dealing with the excessive fatigue that I mentioned recently. Clinic and chemo tomorrow for her, hopefully her counts will still not show anything going on. Zachary, I am pretty sure is dealing with some icky virus. Hopefully, he can kick it soon and feel better. If he doesn't seem to be on the upswing by Thursday we will head him off to the pediatrician also.

That's about it for the odd, disjointed menu...

I promise to try to be a little more eloquent next time. But hey, at least you got some cute kid pictures, right?

Love to all~

It's not really that much to ask...

2009-01-20T18:17:00.000-08:00

One of my favorite homework chores to do with my kids is to pore over stuff they have written or drawn. I get to oohhh and ahhhh and make gushy mommy over everything that they have put pencil, crayon or keyboard to.

Today, Mandy came home with a stack of stories from school. Oh goodie gumdrops!! I settled all in on the couch (wrapped in a blanket, cause as you might remember it is cold here. And I? Am not so good with the Duraflame). Mandy plopped down on my lap to join me in savoring all of her penned Mandy goodness.

One was singing the praises of pizza. She's 8, people. Pizza makes her happy. Therefore, it is worthy of as much poetic prose professing the virtues of pepperoni that she can come up with. Oh, and popcorn too. Come on, who doesn't love popcorn? And because popcorn and pizza go as well together as a great Pinot Grigio and broiled lobster. Plus, is good for alliteration practice.

The next was all about the cat.

Mandy is all "I love my cat."

I'm all, "WUTEVA!"

The cat is not one of my favorite animals, mainly because he is easily confused. This could be due in part that the cat is named Autumn, which would be fine for a little girly kitty. However, Autumn is a boy. Yea. Whoops. My bad. Alannah named him when she was about 6 and thought since he was orange and that was the color of fall leaves that Autumn would be a great name, gender be darned. So, I guess the blame is on us. We set him up to be confused.

FYI, Autumn? If you are reading this? Pile of dirty clothes in closet most assuredly does NOT equal a litter box. I will be happy to prepare a color brochure or perhaps a PowerPoint if you feel either of those would help clarify this finer point of kitty pottying habits for you. It is the least I can do, I suppose, given the whole identity crisis that I allowed Alannah to force on you when you were but a mere kitten.

Then there was one other one. I had already laughed out loud at the pizza one and scoffed at how awesome she believes the stupid cat is.

I didn't look closely enough at this cover art to brace myself.

So, I give you My 3 Wishes, written and Illustrated by Mandy Willis

If I had 3 wishes, I would be so excited! First I would wish for a cell phone, so I can call my best friends. Also, I can play games on a cell phone like Brickbreaker. Then I would wish for a laptop so I can go to www.pixiehollow.com. It's a website to make a pixie. Also, I can make an email address so I can get and send an email. Last and best, I would wish that cancer and nf was not a sickness anymore. So kids can do cheerleading, dance and gymnastics. Also kids can go to school Monday, Tuesday, Wednesday, Thursday and Friday. Also kids can go to every special like dance and computer lab. These are three things I would wish for and why. What would you wish for and why would you wish for them?

It's not that much to ask.

Well, OK, the laptop and the cell phone are a lot to ask.

But the rest? She just wants to be a kid. She wants to get perfect attendance. She wants to go to dance. She wants to be a cheerleader.

And that?

Just isn't that much to ask.

It breaks my heart that I can't give that to her.

Heroes

2009-01-19T21:36:00.000-08:00

I have never really been one for celebrity worship. I mean, don't get me wrong, I think Brad Pitt is just about the most yummy thing out there. But, generally speaking, I am not one to get all star-struck over just about anybody.

We have met more than our fair share of celebrities over the last year or so. Most are sweet and kind, and they make an effort with the kids. A few are obviously only there because their agent told them they needed some positive press. A precious few, however, really get it. They get what these kids go through. They get how much a little attention from them means to these kids.

Brad Richards is the latter of these types. Brad played for the Tampa Bay Lightning before he was traded away to the Dallas Stars. He did so many amazing things for the pediatric cancer community. He bought a suite in the Forum, just for them, decorated it all up like a kid utopia and always had it stocked with all sorts of kid food and drink. He had a bunch of fun outings and activities for his "Richy's Rascals" group.

Oh yeah, he got it. And then some.

Tonight was Brad's first appearance at the Forum as a member of the Dallas Stars. As always, he stepped up to the plate for his Rascals.

Richards is that kind of celebrity. He's the kind of celebrity that always has time for his littlest fans. He's the kind of celebrity who plays his heart out, and within 20 minutes after a heartcrushing 4-2 loss is in suit and tie hosting a room full of kids and their families, smiling for photos, signing autographs. He's the kind of celebrity who calls the people running his foundation to say, "Hey, I am coming home, get the kids tickets to the game and I want to say hi to all of them afterwards."

I can be star struck over that. He doesn't do all of what he does for the kids because he has to. He does it because he wants to. He is truly one of the good guys, and I hope he realizes just how much of an impact he has had here in Tampa.

Thanks, Kasey and Brad for a great hockey night! You guys rock!

Zachary, Mandy and Brad. Regrettably, Alannah was not feeling well and couldn't make it tonight.

And while I am being all sappy...

When Mandy first started treatment, I was so scared and was overwhelmed by the alone- in-a-crowded room feeling. I had a million questions and zero ability to be articulate and ask them. I stumbled across a website of a family whose youngest daughter was battling leukemia.

As it turned out, the hostess of this site and her family live 15 minutes from my house. She was foolish enough to answer the phone when I called all crying and terrified. Now, uur kids love each other, we have an annoying habit of finishing each others sentences, our husbands have lots of geeky things in common to talk about ... our families became fast friends.

Through the last year of Peyton's treatment and the first year of Mandy's we have cried together and laughed together.

Last week, we rejoiced together.

After over 2 years of treatment, chemo, radiation, countless blood tests and hospitalizations, Peyton is officially a cancer survivor. She finished her chemo, her port came out, and she is done! Peyton survived, and so did their family, in whole, intact and overflowing with love. It is impossible to overestimate the difficulty of any of those accomplishments.

This one? Right here? Kicked cancer's booty, y'all!

Congratulations, Mayhew family!

Love to all~

Our Duraflame had too much flame and not enough dura

2009-01-16T22:53:00.000-08:00

It's cold in Florida.

Translation:It is below 60 outside and we are a family of wimps.

Alannah is spending the night at a friends house.

Translation: Please momma can I go stay up all night and laugh and giggle and come home and be insufferable tomorrow because I am so tired.

So, because of the aforementioned cold, Mandy and Zachary asked me to start a fire in the fireplace.

Transalation: Go to garage haul in faux wood Duraflame. Use long fancy lighter to set fire to the arrows and VOILA! I am woman! Hear me roar! I made fire!

OR....

NOT!

Tonight's version went something like this:

"Momma would you make a fire? It's cold."

"Sure! Maybe we can even roast marshmallows!"

Go to garage.
Get faux wood.
Get long fancy lighter.
Open glass doors on fireplace.
Wonder aloud if that thingamigig is supposed to be forward or backward. Decide forward looks good. Because why on earth would anyone have moved it from the last time we had a fire? That would just be stupid.
Chuck Duraflame onto little brick Duraflame-holder-upper-things.
Light arrows on paper. Careful to follow "Light here" arrows precisely.

Ahhh, fire. I made fire. I made happy kids. All is good. I am good mommy. We are Norman Rockwell painting. Sigh a deep sigh of accomplishment.

Except, I made smoke.....lots and lots of smoke.
I made every smoke alarm in my house go off.
I made Mandy cry in agony, "Mommy, make the noise stop."
I made my dogs bark. And the neighbors dogs bark. Probably made a cow moo somewhere.
I made Zachary note, "It doesn't usually do that momma."
I open every door in my house.
Now it's cold.
And loud.
And smokey.
I am now cursing Duraflame for robbing us of our Norman Rockwell moment.

Turns out? The little thingamigig? The one that would have been stupid for someone to move from the last time we had a fire? Yea. Someone? Was stupid.

Forward?

Wrong answer.

Push thingamigig back, with my bare hand. Burn hand on thingamigig, cause where there is smoke...there is fire. And fire? IS HOT! And makes surrounding metal hot. DUH! Cuss under my breath at thingamigig. Maybe I was stupid person who moved thingamigig in the first place. HATE thingamigig. Thingamigig is evil. Wish very bad mojo on thingamigig and all it's little thingamigig friends and family.

Have cleared out smoke now. Temperature in house is -20. Mandy needs therapy. Zachary is craving smoked ham. Dogs hiding in bedroom. I am terrible mommy. Even worse fire maker.

Finally I conquer thingamigig and we have Norman Rockwell moment. Mandy and Zachary snuggly reading by roaring fire. We are all too traumatized for marshmallows now.

Oh, and? Zachary and Mandy both made honor roll! They also both got to go to the reward Sock Hop for good citizenship! Yay them!! Soooo proud of them! Haven't gotten Alannah's report card yet.

Mandy is still really tired, but we are just going to try to lay low this weekend and see if that helps perk her up. She did well at school today, but wanted to lay down as soon as she got home. Not really sure what to do with the fatigue.

Love to all~

Stuff

2009-01-15T21:18:00.000-08:00

Chemo was good this week.

Wow. What a remarkably oxymoronic sentence that was.

Ok, let me rephrase. Chemo was uneventful this week. Good is a word reserved for all things cute and happy. Mandy's counts were good ANC 1110, Hemoglobin 10 and platelets 356. Mandy was her usual bouncy, crazy happy self. I swear that child teaches me everyday how to find joy in the most obscure places.

We talked with her neuro-oncologist about the most recent scans. Basically, she concurred with the report.

The gist:
Optic glioma= stable
Left Parietal Lobe lesion= unsure, but probably glioma. Wouldn't know for sure without biopsying and that ain't gonna happen.
Myelin Vacuolozation= is what it is

This was week 17 of a planned 52 week protocol. That could be extended if there is a lot of shrinkage, or if things were growing, or if the wind was blowing out of the east on the third Tuesday of the month.

She has been exceptionally exhausted the last two days. We got home from chemo and she slept from 2pm until 6:30pm. She was back in bed by 11pm and slept until 11:30 am. And then topped it all off with a nap from 2 until I woke her up at 5. This can't really be explained by her blood counts, because those were lovely. So, not really sure what that's about. She feels fine, when she's awake.

Mandy had a special date tonight. She went to a hockey game with a very special friend and had a blast! Mandy even got to make a appearance on the big tv! This, made her day, her week, her year!!! Thanks, Lisa for making her feel so special. You are truly made of awesome!

That's about it from here.

Love to all~

I'm sorry? What did you say?

2009-01-13T06:11:00.000-08:00

Dear Makers of Rosetta Stone Language Software,

I seem to have a problem I was hoping you could help me with. I have three beautiful, smart children. I know they are smart because their teachers tell me so, and this assertion is backed up by test grades and report cards. So, I have to assume the shortcoming in our relationship comes from me.

Now, when I was in high school and college I had to take a foreign language. I opted for Latin, given my desire to someday get paid to argue (lawyer) or get paid to fix little kids boo-boos with a kiss and a smile and maybe write them a 'script (doctor). I followed through on neither career choice, by the way.

So, while it makes me feel all smart and stuff that I can conjugate words like abstineô and tell you the root meaning of cerebr, it has very little everyday usefulness.

This is not the first time my lack of language skills has gotten me in trouble. I have been known on more than one occasion to greatly offend some of my Spanish-speaking friends by asking what seemed to be a simple question. While I am certain I said, "May I please borrow your restroom?" in fact, what I actually said is something along the lines of, "My chicken pooped on your grandmother's toast."

Yeah. Me? Not so good with the other languages.

I thought I had English down pretty well, though. However, there seems to be an issue with my dialect. Or accent. Or enunciation. Or something.

As I mentioned above, my kids are smart. Really. So, when I say, "Please go brush your teeth" and they hear "Please go play your Nintendo DS," I have no choice but to believe it is some failure on my part.

Just this morning...

I said: "Please hurry. We are running late."
They heard: "Please try to set a world record for slowest walking human. EVER."

I said: "Get dressed."
They heard: "Why don't you sit on your floor, wrapped in a towel, after your shower, and catch up on some reading?"

I said: "I am going to go brush my teeth. Please have all your school stuff by the door, ready to go."
They heard: "Please, for Pete's sweet sake, take everything you own out of your back pack and dump it in a pile in the middle of the living room floor so that you can verify the existence of your very favorite pencil because if you don't have it there is simply no way you can do your schoolwork."

So, as you can see, there is obviously a language barrier issue here. Maybe it is merely a dialect issue? Maybe it is a whole other language that I can't possibly expect them to understand? Maybe I actually don't make any sound at all and they are just doing the best they can trying to understand my nonexistent subtitles?

Either way, I clearly need your help. It is not them. It is me. I know that and have taken the first step to solving my problem. However, I looked all through your website. I found Swahili, Mandarin and even Persian. And while those sound like interesting languages to learn, they are not exactly applicable to my particular situation. At least I don't think they are. Maybe that is my problem ... I am not even sure what language my children understand.

Rosetta Stone, we are a family in crisis. What kind of mother can I be, if we can't communicate effectively? I beg of you, please let me know exactly what software it is I need to purchase with three easy credit card payments of $39.95 plus shipping and handling? My family's health, well-being and tooth-brushing depends on you.

Thank you so much for your prompt attention to this matter. I look forward to hearing from you soon.

Love,
Natalie

Happy birthday to me

2009-01-08T17:45:00.000-08:00

So, one of the coolest things about my birthday dinner tonight?

Save the fact that it was my eleventy baziollionth 29th birthday.

My Grandma made me dinner.

From Colorado.

I know! Cool, right?

When she was here visiting, she made a bunch of beef brisket(my FAVORITE!) Trust me, if you had my Grandma's brisket, it would be your fave too. In true Grandma fashion, she bagged it all up and put it in the freezer for me. So, despite the fact that she is in Colorado, my Grandma made me my birthday dinner tonight.

Seriously?

How cool is that?!

Ronnie baked me a cake that Alannah decorated.

Awwwwwwww.

Each of the kids gave me a little something that they picked out and wrapped themselves. AND a handmade card!

Serious awwwwwwwwwww.

Zachary told his teacher 73 thousand times that today was his Momma's birthday. I know this because she was sweet enough to email and tell me so. And when I asked him about it tonight he said, "Yup, I sure did. Cause I am so proud of my Momma."

Let the big chorus of "Awwwwwwwwwwww" ensue.

I even got to wear a pink lei at dinner because Mandy informed me it was a birthday necklace and I needed to wear it. Her counts were beautiful yesterday and chemo went uneventfully. How's that for a great gift?!

I was a big pile of loved on Mommy mush shedding those little happy mommy tears. What more could I ask for?

But wait! There's more ... if you order right now you also receive a great lunch with some of the best friends a girl could ever ask for and another of those lunches promised for tomorrow, this time with my "adopted big brother" and one of my BFF's.

So far?

*29* is going pretty darn good.

Thanks everybody for making me feel so special and so loved. Don't know what I ever did to deserve it, but I will spend the rest of forever trying to be even half as good of a person as you think I am. I am not worthy, but thank you for pretending I am.

Love to all~

Why I love hockey

2009-01-05T17:41:00.000-08:00

We have recently discovered that we are a family of hockey fans.

I know.

Who knew? Right?

Well, here's the thing. Hockey? It's cool, no pun intended.! It is an artful blend of grace, knock-down-drag-out fights, way cute hockey player guys and cute cheerleader girls....something for everyone!

I have grown to love hockey. We all have. Don't understand it. AT ALL. But, love to watch it. But, most of all what I love to watch at hockey games is this.

This girl? LOVES HER SOME HOCKEY! Love the players, wants to be a Lightning Girl cheerleader, loves the game, loves the spectacle of it all. LOVES, LOVES, LOVES IT! And I? Love to watch her having this much fun screaming her fool head off.

By the way, MRI results are here, in case you missed it.

Love to all~

May I have the envelope, please

2009-01-05T14:11:00.000-08:00

After much stress and more than one sleepless night on my part, we did get the results today of Mandy's MRI.

For the medical geeks out there, the official report reads

Impression:
Stable abnormal MRI and MR orbits as compared with prior study without new abnormality as identified below.

Findings:
Multiplanar MRI of the brain and orbits was performed prior to and following the administration of intravenous contrast material, read in correlation with the prior MRI dating back to 11/05/08.

As compared with the prior study, there has been no significant interval change.

Left parietal lesion is unchanged with extensive myelin vacuolization again identified medial basal ganglia bilaterally, faintly within the thalami bilaterally as well as within the brain stem including the mid brain and pons extending into the medulla and cerebellar white matter.

There is once again prominence of the optic nerves bilaterally consistent with optic glioma involving the intraorbital segments in this patient with history of neurofibromatosis with mild ectasia of the optic nerve sheathes again noted.

No new orbital or intercranial abnormality is otherwise presently seen.

For the lay folks out there

The scan is essentially unchanged.

Myelin vacuolization is a common anomaly seen in NF patients. It basically means there are holes in the sheath surrounding the nerves and is for the most part inconsequential. There are some studies that think it could be something more significant, but they are far from proven.

We still wish we knew what the area in the left parietal lobe was. I will talk to her neuro-oncologist next appointment, but I would assume we are still just assuming it is another low grade glioma and are treating it with the chemo she is already on. That was the assumption last time, I would expect that to remain unchanged.

Optic Glioma is unchanged from last scan, but remember, from the first scan to the November scan(almost 9 months of treatment) we saw a 10% reduction, so the process is very slow.

So, all in all, a stable scan and no new monsters. So, that's good. Chemo keeps trudging on.

Thank you all for your thoughts and prayers!

Love to all~

True Confessions...

2009-01-02T20:51:00.000-08:00

Ok, a few things you should know...

1) I will likely never be on time. For anything. Ever.

2) I am opinionated. Though I will never be on time, I will always have an opinion about whatever it was that caused me to be late.

3) I have an addiction. And though the first step to solving a problem is admitting you have one, I have no intention to even try to fix my addiction. Suffice it to say, if I could just mainline my Starbucks Mochas, I would. A bad day for me can be measured in mochas. A one-mocha day is just any given Tuesday. A two-mocha day ... that's a rough day. A three-mocha day, well, the apocalypse is nigh, my friends. The Emergency Broadcast System will be activated. Consider grabbing your loved ones, a can of pork and beans and the Bible and heading for the cellar.

and 4) I have no patience. At all. Now, I can be incredibly patient with kids, and animals. But, waiting for anything that isn't, well, sweet and cute ... not so much my strong point.

All of this leads to Mandy's MRI today. All went well with the scan. And now? Well, it's Friday. This means that we will be waiting through the weekend for results. Possibly until Tuesday and be still my heart, even, Wednesday.

That? Right there? Is something I am not patient with. At all.

I came home with a disk of the scans and popped it in my computer and used that medical degree I bought for $19.95 off of a matchbox that came in a plain brown wrapper. To do what? Well, nothing, really. Do I think I know what I see? Sometimes. Do I actually know what I see? Well, probably not. Because, contrary to what I like to delude myself into believing, I am not actually a doctor.

So, all of this to say, Mandy is happy, feeling fine and recovering beautifully from her anesthesia, which is always scary due to her malignant hyperthermia. Thankfully, she doesn't give a rat's behind when the results come back. So, that's good.

Me? On the other hand? Well, let's just say, Starbucks might be a good investment this weekend.

Love to all~

5 things...

2008-12-31T17:21:00.000-08:00

Y'all already know the less than ideal parts about our 2008. It's no secret that in February, our world came to a grinding standstill when Mandy showed significant disease progression and started chemo.

Yeah.

That? Pretty much SUCKED!

And to be honest, I don't really remember much of February. Or March. By April, I start to have some vague recollections.

So, rather than bemoan the crappy parts, I want to wrap 2008 up in some warm, smooshy Willis goodness.

It's a choice. What you do with your life. It really is. Into everyone's life a little (or sometimes a-whole-freakin-lot) of crap must fall. You can hate it, rage against it, cry about it and scream about it. God knows, I did all of those, and still do. Repeatedly. And often. And at the end of it, I try really hard to find the blessings. Sometimes, I succeed. Others? Yea. Not so much. But, I keep trying.

So, in an effort to teach this to my kids, and myself, I gave everyone in my house an assignment: Write down five good things about 2008. No peeking at your neighbor's paper. It had to be from the individual heart. No external inspiration or paraphrasing allowed.

So, I give you The Willis Top 5. Five good things that we'll remember from 2008. Youngest to oldest:

MANDY
1) The Children's Center
2) My sleepover birthday party
3) Poodle
4) Miss Emily and Miss Lisa
5) Flight Camp

ZACHARY
1) I met Nathaniel
2) The Children's Cancer Center
3) I get to spend more time with Daddy
4) Mandy's feeling better
5) Awesome hockey games

ALANNAH
1) I redid my room with my own money
2) Discovered vintage hats and used them in the room redo
3) String Camp
4) High school
5) All the people at the Children's Cancer Center

NATALIE
1) That I had my jaw surgery in January and that it alleviated that whole serial-killer-trying-to-escape-my-skull-with-an-ice-pick-via-my-eye-thing.
2) I am going to cheat and get a two-fer on this one....our support "staff." First, the staff at the Children's Cancer Center. The most amazing gift they give is not hockey tickets, it is not weekend getaways, it is not even the unfailing love and support they offer. It is the gift of being able to, if only for a moment, make cancer and all that goes with it not be the foremost thing in our minds. Secondly, the amazing staff at All Children's Tampa Hematology/Oncology clinic. They have taken a wretched, terrifying situation and made my daughter smile, absolutely every time it was even remotely possible. She loves these people, as do I, and for that my thankfulness knows no bounds.
3) The amazing kindness we have been shown over and over in a million different ways by our friends, our family, and people we don't even know personally. It would take me far too long and far too many words to adequately express my thanks for your support and your love and your never ending ability to just be there for us.
4) The gift of slowing down and appreciating every single moment, every single breath, every single smile, every laugh, every hug. I take nothing for granted. I savor every moment. You just never know when it will all change, when life will be turned on it's ear. Relish it.
5) Ronnie, Alannah, Zachary and Mandy. The reason in my life. For just about everything. It just doesn't get more simple than that.

RONNIE (who took the whole 5 bullet points assignment and got a bit wordy with it. But it is sweet and lovely and so it all gets to be on here exactly as he wrote it).

I will confess that I didn’t exactly receive this assignment with great enthusiasm. Frankly, there is not a lot I’d like to remember about 2008, given that it took a turn for the unpleasant on Day 49.

But I am nothing if not loyal and dutiful and responsive to an assignment.

And when forced to reflect (if only for a few minutes — the deadline was pretty tight), the reflection reveals that there were actually many things to treasure about this year.

In no particular order:

THE KINDNESS OF STRANGERS and not-so-strangers: Friends, neighbors, area businesses, people we barely know, people we don’t know ... We’ve been on the receiving end of a lot of goodness this year. The list is long and I’d miss my deadline — not to mention a few names — if I was to try to list it all here. You know who you are. “Thank you” isn’t enough, but it’s the best I can do given the constraints of disk space and the English language.

ONE PARTICULAR NAME that I didn’t know before this year is etched near the top of my heart now. Mary Ann Massolio, the executive director of the Children’s Cancer Center, is a bright, bright light illuminating a journey that might otherwise be very dark. She and her staff have taken in our whole family — not just Mandy — as five of their own. My children have learned a lot about how to be good people in the last year, and Mary Ann has been a fabulous example to follow.

I HAD SOME GREAT NIGHTS IN DENMARK with some good friends; a few nights that lasted well into the next morning. It was a tremendous example of the power of music, red wine and friendship, and how that power crosses international boundaries. It was great to do something overseas other than work, and it was great to see real-time examples of another culture going about normal life. I’ve been greatly enriched by my travels in many ways, but none more powerful than getting to just hang out and listen to tunes and have a good time with some good people.

I KEPT MY JOB. Given the state of the economy and the state of the industry in which I work, this is more of an upset than you might think. A lot of people more qualified than me didn’t get through 2008 without a visit from the Career Grim Reaper. It’s been a grim reminder that there are few guarantees in life, and a confirmation of how important it is to give my best to every day.

MY WIFE. This is not an upset; she was also the best thing about 2007, 2006, 2005, 2004, 2003, 2002, 2001, 2000, 1999, 1998, 1997, 1996, 1995, 1994, 1993, 1992, 1991, and 1990. Seeing it all written out brings new meaning to it. Realizing that 2008 is just another four digits in a journey that has covered a lot of ground and is about to cover a lot more, well, that gives me everything I need to look forward to four more digits, and four more yet, and four more ...

So, yeah, 2008 is a year I’d rather not repeat. But as it turns out, that doesn’t mean I want to forget.

---

May your 2009 give you more love than your heart can hold, enough laughter to make your cheeks hurt and a never ending, never failing hope for tomorrow.

Love to all of you from all of us~

Cheap attempt to distract you from the fact that I am not writing...

2008-12-28T19:42:00.000-08:00

No time yet for a real post. But thought I would see if merely plying you with cute pictures rather trying to string together a coherent, much less deep and meaningful Christmas post would suffice for now.

It was a great holiday, filled with love and noise and messes. Truly, Mandy running around like a crazed Christmas maniac on Christmas Eve was music to my ears. She had chemo that morning and was just thrilled with all that Christmas Eve meant that night. Hearing and seeing all that joy and excitement in my kids was the best gift I could have ever asked for.

Now, on with the pictures that will hopefully distract you enough from the fact that I really didn't write anything of substance to go with it!

Zachary had a very Lego Christmas

Alannah is 14. iTunes gift cards are always cause for joy and glee for her!

Everybody got presents! Mandy loved delivering Santa's goodies to Poodle!

Mandy's favorite gift was a Mommy I Gotta Go doll. And yes, she does just what you would think she does. Seriously, she has a little toilet with faux pee and and poo in it that you get the unfettered Christmas joy of flushing away. I know. Repulsive, right?

I was more than a little disappointed that it did not come with a bidet. How on earth is this poor doll supposed to wash her hands????? In the sink? Puhleeze! Where is the creativity and originality in that?

I hope your holiday was filled with peace in your heart, joy in your home and love in your life!

Love to all~

Merry Christmas to all!

2008-12-24T13:51:00.000-08:00

The bloodwork was good. The chemo was administered. The cookies are baked. The presents are wrapped. The ham is bought. The lights are hung. The tree is up. The family is here. The children are excited. Let Christmas begin...

May your holiday be filled with peace, love, joy and hope. To each and everyone of you who have helped make this Christmas overflow with blessings of a million different kinds, thank you. We are truly blessed and thankful this holiday season for so many things.

We love you all.

Merry Christmas to all and to all a good night~

Holidays are here, ready or not

2008-12-17T15:55:00.000-08:00

We finally got around to decorating, way later than usual this year. But, it's done and lovely!

The kids always love going through the decorations and talking about each one. My Grandma, cause she really is just the best, has given me a dated ornament every year of my life and now does the same for the kids. So, no traditional glass balls or color coordinated haute couture trees in our house. Every ornament has a meaning and a story and part of what makes our Christmas wonderful is retelling each and every one of those stories every year.

Amazingly neither this

or this

or even this

ended with a toppled tree or an ER trip. So decorations up + no injuries= holiday success!

Today was, of course, chemo day. Mandy made counts today, by the hair of her chinny chin chin. But, she made it. Her ANC has to be 750 to get chemo. Hers was 770. This has been a steady downhill slide for about the last month. Her platelets were still fine at 364 (oddly high, go figure). Hemoglobin was 9.6, which is lowish for her. She is showing signs of that with fatigue, pallor, irritability and complaining of being cold all the time. Chemo was a little rough this week on her tummy. Chemo next week is on Christmas Eve (YUCK!). That is, of course, assuming she makes counts. The other possible scenario is they may have to hold chemo and we may come home and be on lockdown due to low counts.

I'm just kind of in the yucky mommy place. It stinks she has chemo on Christmas Eve. It stinks she has chemo at all. It stinks she doesn't feel good and doesn't have energy. It just plain stinks.

Mandy's philosophy? Well, it is clearly stated by this sign on her door.

Love to all~

HO, HO, HOly cow these guys are huge!

2008-12-11T20:44:00.000-08:00

The Christmas season just keeps coming here.

Tonight, Alannah had her school orchestra concert and did a whole lotta this

She goes to a performing arts high school (think FAME)You're humming the song now aren't you? "FAME! I'm gonna live forever...I'm gonna learn how to fly...") The concerts at this school are right on par with a lot of professional symphonies and are very impressive.

Daddy and I did split duty tonight so while he was watching Alannah do this,

Zachary and Mandy and I were at the Children's Cancer Center Christmas party. We were surrounded by big guys tonight...Santa was doing gift giving duty with the kids. Mandy was somewhat trepidatious about the big guy, as usual. Though Zachary had no qualms at all. He walked right up and whispered, "LEGOS, please!" in the big man's ear.

And as if that big guy wasn't enough. There were yet more big guys! The defensive line from the Tampa Bay Buccaneers was there tonight. All of the players were great. Though, I officially have a favorite Bucs player now. Kevin Carter, No. 93, was so good with the kids and just an absolute sweetheart with Mandy. She took one look at him in all of his hugeness and handed me the helmet to have him sign. She had this look of, "Dude you outweigh me by like 300 pounds. I am not asking you to sign ANYTHING! I am outta here!" He got down on the floor with her, complimented her dress and told her how pretty she was (he obviously knew the way to Mandy's heart) and soon, she was warming up to him. Too cute!

I was trying to get this picture and didn't have a wide enough angle to get Zachary standing in front of Greg Peterson, No. 96. So, while I was jockying around trying to get a better angle. Greg just picked Zachary up (exerting about as much energy as it takes me to pick up a Mallomar) and said, "Does, this work better?" Yup, that'll do just fine!!

One would generally not think of a support group for cancer patients and their families as a fun place to hang out. And yet? Sometimes, it is. The staff is amazing. They have become family on this journey with us. The other families are a rock for each other. We hope together, we cry together and we laugh together. I can't imagine going through this without the Center and everything and every way they have supported us and loved us. We love them all and are so fortunate to have such an amazing organization here.

Hope you are enjoying your own holiday chaos while still being filled with the peace of the season.

Love to all~

'Tis the Season

2008-12-10T16:59:00.000-08:00

I know, I know.

It has been over a week since I updated.

Feel free to send me a virtual rap-on-the-knuckles with a ruler. (I didn't actually go to Catholic school, but I've heard stories.)

Either way, my apologies. I have the same excuse that all the rest of you do. Apparently, Christmas? It comes right after Thanksgiving. Like say, oh, now-ish. Go figure, huh?

So, in our house, this time of year means two things:

1)It means 9.3 million Christmas plays and musical concerts. Apparently, in addition to the usual run of surprising developments in the last few weeks, I am also emerging as a stage mom. Again, who knew?

2)My kids have all fallen victim to SAH, otherwise known as Seasonal Affective Hysteria. You might be familiar with it. Children who are normally of above-average intelligence and who are generally well-behaved LOSE THEIR DAMN MINDS because they are drunk on Christmas spirit. (Does anyone have a tranquilizer dart or two I can borrow? Just askin'.)

So, medical stuff first. Essentially, no news is good news. Her blood counts are sort of trending down-ish, but not in an alarming way. Her ANC was 960 (low-ish) today and Hemoglobin 9.8 (low-ish) and platelets were 364 (high-ish). Chemo has gone off without a hitch for the last two weeks. She was loud and happy and enthusiastic today and had a ball playing UNO with a volunteer. So, all is well there.

So, for phase one of "what-happens-this-time-of-year," Zachary had a very theatrical week. He was cast as Linus (dressed in shepherds clothes) in the church Christmas play. He had to learn and recite alllllllllllllllll of Luke 2. The chapter, not just some verses. I was just so darned proud of him, I can't stand it!(See there? That's the stage mom thing.) He did great, never messed up once and looked poised and confident.

Mandy was originally supposed to be cast as Mary. But she was switched to a role as an angel, which was GREAT with her, because, to quote the diva herself, "The angel has a MUCH better wardrobe."

With four shows over three days, I had plenty of time to practice my new stage-mom persona. It's not as much fun as it sounds; it's basically a whole lotta time sitting backstage and in the green room watching Joseph, some shepherds and some wise men play Nintendo DS.

The angel shared her DS knowledge with Mary in the giving spirit of the season.

And for phase two of what-happens-this-time-of-year, Mandy had had just about enough by the last performance. I should have known. She gave me clues and I just was not paying close enough attention. I blame myself. They were not even subtle signs. For instance, "Ya know, Momma, when Zachary says And Lo the angel of the Lord came upon them and said..., well, I am the angel. Shouldn't I say that part?" But, nooooooooo, I didn't see it coming. Suffice it to say, if that child is on a stage, someone darn well better be looking at her! So, in an effort to bring some audience love her way, she decided to play the world's happiest angel.

So, she started giggling.

And giggling.

And acting all coy and flirty.

And giggling.

She smiled, she giggled some more. I am pretty sure she batted her eyelashes at one point.

So poor Zachary is up there being all, "Behold, I bring you good tidings of great joy..."

And the crowd? Well, they are laughing, guffawing and chuckling at the happiest little angel you ever did see.

She's a thief, my daughter. An angel-wing-wearing, coy-acting, audience-flirting, giggling little scene-stealer.

Mercifully, Zachary was still feeling the good tidings of great joy when he exited stage left. He was happy and pleased with his performance, but did ask, "what on Earth was so funny?" He took it well when I explained his sister was full of, um, uh, Christmas joy.

This was a fortunate break because had a fist fight broken out between the angel and a shepherd ... well, that's just not very Christmas-y, now is it?

Lather, rinse, repeat on phase one. Zachary's school Christmas play. He played Danny Elfman (composer of such great works as the theme to Batman, among others.) He was a hoot!! And now he desperately wants to take acting lessons at the Performing Arts Center. Yeah, being a stage mom doesn't pay well enough for me to pull that one off!

Tomorrow, we are double-booked with Alannah's orchestra concert and the Christmas party at the Children's Cancer Center. Alannah will be in one place with Daddy seeing to phase one of what-happens-this-time-of-year. Zachary and Mandy will be with me at the party allllll full of phase two of what-happens-this-time-of-year.

Love to all~

Hand washing 101

2008-12-01T18:19:00.000-08:00

A conversation you never want to have with your 8-year-old-immune-compromised-currently-receiving-chemotherapy-beautiful-although-apparently-not-all-that-classy daughter:

We are at the home of my good friend Miss Mary Ann, who is the director of the Children's Cancer Center. We are getting the grand tour of her beautiful home. Mary Ann, my friend Angela, and I are all standing in the master bathroom discussing the VERY pink marble vanity and bath tub.

Mandy comes bounding in to use the restroom, with Angela's daughter in tow. In they go, to the little water closet where the toilet is. As everybody knows, 8-year-old girls like to travel in herds to the bathroom, whenever possible. (Come to think of it, they never really outgrow that tendency).

Door closes. Giggling. I can only assume they answer nature's call. More giggling. Out they come and head out the door. Much giggling.

This is where it gets ugly.

"Mandy! You need to come back and wash your hands!" Giggling stops.

"Momma, I did already," in a voice laced with annoyance.

"No, honey, you didn't. I am standing right here and you did not wash your hands."

Somewhat indignant now: "YES, MOMMA I DID!"

I taught her how to be indignant. So, in an indignant tone that puts hers to shame, "Mandy, NO you did NOT. Here I am. Here is the sink. Been here the whole time. Both the sink and I. And neither the sink, nor I, nor the other two mommies standing RIGHT HERE saw you wash your hands. No water, no soap, no hand towel. THERE WAS NO HAND WASHING! SO, get back in here and wash up before you leave this bathroom."

Girl, allllllllllllll full of attitude stomps over and opens water closet door.

"I did too wash my hands! I washed them in the low sink, just for kids, RIGHT THERE!!!!"

A low sink just for kids? That's kind of odd. Sweet, but odd. Why would there be a low sink for ... ?

And then she points.

Not at a fancy low sink made just for kids. Nooooooooooo.

She points at

A

BIDET!

OH DEAR LORD!

My daughter just washed her hands in a bidet!!!!!

OH OH OH OH OH!!!!!!!!

Ewwwwwwwwwwwwwwwwwww!!!!

Now, Mary Ann's house is cleaner than just about any house in the free world. She is acutely aware of the immune-compromised status of many of her shortest guests, and the house reflects that in all of it's clean and shiny glory! But seriously, I can't imagine she plans for hand-washing in the bidet, for pete's sweet sake!

My daughter washed her hands in a device my son calls a "butt washer."

Me? I am a crappy mom. But my daughter? She is apparently taking the crappy to a whole new level.

We is high class, people. High class, I tell ya'.

Love to all~

A cart full of blessings

2008-11-25T06:47:00.000-08:00

Ok, by a show of hands, who has ever gone to the grocery store hungry? Uh huh. Keep them up there if you have gone to the grocery store so ravenously hungry that you walked every single aisle in the store and had to have at least one of everything you saw. Yeah, that's what I thought. Been there, done that, huh?

It goes a little something like this:

"Ohhhhhhhh, Ramen Noodles, haven't had those since college. I need me some of them. Oh, Oh, Oh MALLOMARS! Come on now, who doesn't love Mallomars?! Woohooo!!! Tangerines! I feel a bit stuffy, Vitamin C would do me good. Yeehaw, olives stuffed with jalapenos! It's like a party in your mouth! Ohhhhhhhhh, Cream of Shrimp Soup. Tasty! Lookie here, French onion dip! Yea, baby! Oh boy, Doritoes..."

You get the idea. Heck, you have been there. (By the way, you can put your hands down now.)

So, I go in to buy a gallon of milk and came out with $200 worth of stuff that will sit in my cabinet until one of my kids says, "Hey, Momma, we are having a can drive at church/school/Girl Scouts. You have anything I can take?" Whew, what a relief; now I can do something with the Cream of Shrimp Soup and the olives stuffed with jalapenos.

(The Mallomars? I ate the Mallomars. All of 'em. By myself. I don't even have guilt -- a horrible stomachache perhaps, but NO GUILT I TELL YOU!)

When Mandy was first diagnosed, praying, sitting down and talking to God felt like that. It felt like standing in the grocery store being hungry, wanting one of everything, and not knowing where to start or how to even come close to articulating it.

Sometimes, my prayers were a lot less like prayers and a lot more like a fight. I would yell, in my head, and sometimes out loud, in my angriest voice, "God, FIX IT NOW!!!!"

Sometimes, it was pleading and begging and through my sobs: "Dear God, please fix it."

No matter the emotion behind the delivery, it was almost always the same prayer. Most of the time, I couldn't be more specific. It is just all wrong. Please fix it.

Help her.

Help Alannah and Zachary.

Help Ronnie.

Help me.

Help us.

Just, help.

To say that I don't still have days of being angry at God would be a lie. To say I don't still have days of pleading and begging and offering up my own soul, and making a thousand promises if he would just heal Mandy, would be a lie. I do have all those days, and more.

The thing that has been so powerful through this journey has been that never-ending presence, even in the darkest of moments; even when I am so angry I can't see straight; even when I am so scared that I am blinded by my fear; even when my heart is breaking and I am blinded by my tears, I feel it. I know He's there.

I'll be honest: Sometimes, that infuriates me. How can You possibly watch what these kids go through and NOT DO SOMETHING?!

My prayers aren't always answered in the way I would hope. Obviously, my first prayer is "Make this all go away, make it not real, make it just be a bad dream."

And it's not.

It is real.

But, it has been nine months and we are still standing. Mandy is dong beautifully and we just got the best news we could have hoped for at the last meeting of the tumor board. We are still standing side by side, the five of us. Alannah and Zachary are being stronger than they should ever have had to be, and they are doing it with willing hearts and beautiful smiles. We have people standing around us, more people than I can begin to count, standing beside us and behind us to hold us up when we don't feel strong enough on our own.

Would I rather not need them? Oh yeah.

Would I rather just be able to go be that support and show that love to someone else? OH HECK YEAH!

Would I rather not have to see any of my kids dig so deep for strength and courage? Oh, I would give my right arm for that.

But, this is our life. And, it is a blessing that we are being given the support, the tools and the strength with which to live it.

Because the funny thing about going to the grocery store hungry: Even if I didn't come out with what I went in for, I came out with something that will nourish me and keep me sustained until the next time.

May your Thanksgiving be full of blessings, love and hope.

Love to all~

Nothin but net!!

2008-11-22T07:53:00.001-08:00

When I was in 7th grade, I was already 5-foot-10. As such, it only stood to reason that I would be an awesome basketball player. Or so the coach told me. I put down my neon nail polish, jelly bracelets and Men Without Hats cassette tape long enough to go try out. (It was the 80's; don't judge me.)

I didn't want to try out, much less play. Trying out and, heaven forbid, actually playing? Well, that meant sweating and ewwwwww, why would I want to do that, for pete's sweet sake? But the coach swore I would rock, so what the heck. I like to be a rock star, so I gave it a shot.

I made the team. They listed me at 6-1 on the roster (to further intimidate the hapless opponents, of course) and put me in at power forward and waited for my natural-born talent to appear.

And waited.

And waited.

And waited.

Height? Yeah, it does not necessarily equal talent.

To say I was wretched on the court is an understatement of epic proportions. I was merely a mix of too-long arms and too-long legs clumsily galloping down the court. Imagine a hog-tied giraffe being rolled down the court, hurtling towards other players like they were bowling pins, and you have a pretty good idea of the artistry in motion that was me on a basketball court.

And give me the ball? Not a good plan. There were girls who could sink that darn ball every single time. Like it had a magnetic attraction to the goal. Oh yeah, baby, nothin' but net every single time they touched the ball. My shots apparently had a magnetic attraction to the air below the hoop. When my shots were "nothing but net," that meant "nothing but the outside of the net." My husband, a former sportswriter, describes me euphemistically as a "foul-prone defensive specialist."

Mandy is no danger of ever being mistaken for a basketball star. She is TINY for her age. Most girls her age are a full head taller than her. The tumor and the NF have caused her to be growth hormone deficient. This after being saddled with genetics from her height-challenged, 5-foot-7 father. She is travel-sized.

But, trust me when I say Mandy just scored a big, huge goal with nothin' but net! A 40-foot 3-pointer! A double-pump, reverse, two-handed slam-dunk!

Girlfriend is a superstar! A rock star! An all star!!! And any other accolade you can come up with to give her.

We drove down to St. Petersburg yesterday to see her Neuro-Oncologist about the whole two- different-sized-pupil thing she had going on two days before. It has gone away. It is believed to just be an idiopathic late response to eye drops used to dilate her eyes a few days before. Good news. No worries there. And no last-minute CT, thank goodness.

While we had her doctor there, I asked how much shrinkage we have gotten since starting treatment on the optic glioma.

Remember, sometimes, the most you can hope for with these tumors is stable. You often don't actually see them shrink.

It has shrunk!!!!!!!!!

By how much, you ask?

Can I get a drumroll, please?

10 percent!!!!!!!!

1/10!!!!!!!!!!!!

.1!!!!!!!!!!!!!!!!!!!!

That's the extent of my math skills, but so not the extent of my exclamation marks!!!!!!! That is huge and we are thrilled!!!! Thank God for answered prayers!

She does think the spot in the left parietal lobe is most likely another glioma, but it will be treated by the chemo we are already doing for the optic glioma. So, that's good that nothing changes on the treatment course.

My baby girl? She may be tiny, but people, she is made of TOUGH!

Love to all~

That Scarlet... she knew stuff

2008-11-19T13:14:00.000-08:00

So, tomorrow is, in fact, another day. Well, today now. But, today is another day doesn't have the same fabulous, old Hollywood ring to it. But, today is definitely overall better than yesterday.

I got a phone call from Mandy's neuro-oncologist today at clinic. She presented Mandy's case to the tumor board again. They looked at numerous scans and compared them. When you look at most recent scan to most recent scan (which are only 8 weeks apart) there appears to be no different and merely stable.

BUT, when you compare the scans at the beginning of treatment to the most recent scan of a few weeks ago there is actually SHRINKAGE TO THE OPTIC GLIOMAS!

Can I get an amen???!!!

So, how about that?

This is big news!

Take moment and happy dance on that one, applaud and say thanks.

But wait, there's more. No ginsu knives for ordering right now, but, the tumor board also really feels that the areas of previous concern in the brain stem and the ventricles are areas of myelin vaculozation. This is a common brain anomaly in NF patients. It is essentially inconsequential. In the simplest most possible terms, myelin is the covering of nerves in the brain. Myelin Vaculozation means there are holes in the myelin. Overall, something that heals itself later in life. This is great news as we had been previously told that the areas in the brain stem and the ventricles were potentially catastrophic.

So, fabulous news there. Then there's the other area of concern, in the left parietal lobe. Nobody really knew what to make of it. It is presenting differently than the myelin vaculozation. So, it's not that. Could be a hamartoma, a benign tumor associated with NF, but doesn't look much like that either. It could be another low grade glioma, but no way to know for sure without doing a biopsy, which we wouldn't do. So, no real information there.

One other oddity today, Mandy's right pupil is smaller than the left right now, well all day today, actually. Odd, following yesterday's possible concern about lack of response of that same optic nerve. The right is also the side on which the optic glioma is the largest. So, because I am me, and paranoid and made of crazy, I am worried about this. They did dilate her pupils yesterday, so it could be leftover from that. I truly doubt anything else could escalate quite that quickly, but, like I said, I am made of crazy. So, I called her neuro-oncologist and left a message about it since we didn't see her at clinic today. Like I said, I am sure it is nothing. But, I prefer to bring Doctors into my particular brand of neurosis, so I have company.

Her blood work was all good today and chemo came and went with out a hitch. She is sleeping it off right now.

So, for the most part, very good news today. The rest? Well, we will just cross those bridges when we come to them.

For now, I am shedding my grump of yesterday and any uncertainty of today and cloaking myself in the good of today, cause there was a lot of it. Mandy has not stopped smiling and is feeling and acting great.

Geez, crazy much?

Ok, seriously. I was just about to hit publish on the above post. The phone rang from the clinic. Apparently, her neuro-oncologist called back and wants to do a CT to look at the ventricles. Ok. That caught me totally off guard. I didn't get to speak with the Doc. So, I'm not sure if it was because of the different sizes of pupils today, but I would assume so. I am sure they are fine. If it was fine two weeks ago at scans, I am sure it is fine now. They will call to schedule that tomorrow.

I'm going to bed.

Love to all~

Terrible Two's

2008-11-18T17:20:00.001-08:00

I try. The vast majority of the time, I try, to keep my chin up, a smile on my face, a spring in my step or any other stupid faux happy cliche you can come up with. I try to just keep going, keep believing, keep knowing all will be okay.

I do.

Really.

I promise.

Yeah. Then? Then there's today. Today? Not so much with the happy, positive, chin up thing. Tomorrow I will do that again.

But, today? Today, I want to throw a terrible 2's esque, feet kicking, fist pounding, "It's not fair" screaming, nasty, ugly temper tantrum.

Now that you really want to come over and be my friend....

Mandy had an appointment with her neuro-opthamologist today. Yes, there is such a specialty. Nothing horrid by any stretch came from it. But, he thinks the right pupil is possibly becoming less reactive than the left. This could be an early sign of degeneration or damage to the optic nerve.

In short, it could be a sign that her vision could start faltering soon in that eye. We have been very lucky, given the size of her tumor that her vision has remained stable. And it still may.

But, today, I am going to drink my mocha my friend was brave enough to bring me. I am going to concede and be a temper tantrum throwing, I want my little girl to be healthy and not have to deal with all this, screaming, "It's just not fair" grumpy Mom. 'Cause acting like a 2 year old would be unbecoming for a woman of my age.

Tomorrow back to the chin up, smile on the face, spring in my step thing.

After all, tomorrow is another day, or so says Scarlet anyway.

Love to all~

Shameless Bragging

2008-11-15T19:25:00.001-08:00

If you are someone who is offended by people who brag about their kids, you might wanna stop reading. If you think that parents who get all, "Oh, look at this picture/video/trophy of my kid," you might wanna stop reading.

If however you are all in for a hearty game of, "Look how cool my kid is," hang out for a second and watch this. This is Alannah getting a Superior for her viola solo. It is the highest rating you can get if you don't have your piece memorized. Yea, her!! :-)

It was taken with a phone so the sound isn't fabulous, but you get the idea. I am asking Santa for one of those FLIP digital camcorder things for Christmas, though Santa is pretty darn broke this year so I don't see it happening. But in the meantime, here is Alannah Willis and her viola performing, "Telemann Concerto in G Major 2nd Movement."

Heaven help me when he's 16

2008-11-15T13:10:00.000-08:00

For purposes of this episode of As the 4th Grade Turns, the role of "Cute little girl in his class that Zachary has a crush on" shall be called Britney.

The scene: It is a cloudy, cool fall Florida afternoon. Momma is cleaning the deck. Zachary is playing outside.

Zachary: "Momma can I go call Britney?"

Momma: "Sure, buddy, go right ahead."

Zachary heads in to call Britney. Momma continues cleaning the deck. About 2 minutes pass and Zachary reemerges outside.

Zachary: "She wasn't home."

Momma: "So, buddy, have you told her you like her yet?"

Zachary: "No, not yet. But, I flirt with her everyday. I am going to wait until Valentines Day to tell her though. I am planning on giving her a note with some chocolates and maybe a cd of love songs. That always does well. Works like a charm and never fails."

Momma sighs and shakes her head and goes back to washing the deck.

Stay tuned for our next episode of As the 4th Grade Turns. Cue the credits and closing music.

A day in the life

2008-11-12T12:41:00.000-08:00

Wednesday is marked by most folks as "hump day." The middle of the week. The point at which you can see the weekend from here if you stand on your tippy toes and squint. Maybe it is the day you start bugging your spouse about the Honey-Do list for Saturday afternoon. Maybe it is the day of your big weekly staff meeting. Maybe it is the day you start talking about where you will spend Friday nights after work happy hour. For us, every Wednesday, for as long as we can see into the future, is chemo day.

Our day starts with getting Alannah and Zachary dressed, ready and out the door to school. We apply EMLA cream, a numbing agent, to the skin over Mandy's surgically implanted port. This eases discomfort during port access.

First thing at chemo Mandy gets weighed, measured, temp, blood pressure and pulse taken.

Then it is off to an exam room to have her port accessed. This is when the nurse will put the needle in her port that will be used to administer the chemotherapy medications.

Mandy takes the Glad Press and Seal off of her EMLA cream. (Yup, that's right, Glad Press and Seal, it's not just for food anymore)

Then her nurse cleans the port area for 30 seconds. Mandy HATES the smell of this stuff.

Mandy has a counting thing and picks a number less than ten to count to before the nurse is allowed to touch her port. The nurses absolutely rock and are incredibly patient waiting for Mandy to reach her magic number. One of her very favorite nurses, Miss Lisa, has the needle hidden in her hand, waiting for Mandy to finish counting and be ready.

Then in goes the needle. This is no fun, but Mandy is so brave and strong.

Then we draw the blood to do the counts that we are so dependent on. These counts tell us if her immune system is strong enough to handle the chemo that day or if she needs additional blood product in a transfusion.

The needle is taped down to keep it secure and germ-free. The tape going on is a cakewalk. The tape coming off is a nightmare. Thankfully, there is an adhesive remover that helps immensely with that part.

Today, all her blood work was fine, so it was down the hall to the infusion room. The process of delivering all the medications takes about an hour and a half. Sometimes she plays with the awesome staff, like her other very favorite nurse, Miss Emily.

Sometimes, she just watches a movie.

She gets several medications through her port: An anti nausea medicine, her chemo meds, a saline flush and a heparin flush. This process takes about an hour and a half. The tape is removed, the needle is removed and we head home.

Today she had a particularly upset tummy and needed an extra anti-nausea at the end. That one is a narcotic and leaves her pretty strung out.

The thing about chemo day: it's just what she does on Wednesday. If you look closely at these pictures, what do you see? She's smiling, she's laughing. She loves these nurses and these doctors. A kid in chemotherapy is just that, a kid. It is a crummy, nasty situation, no doubt, but, it just becomes "the new normal," as much as it can be.

When Mandy first started treatment she was incredibly angry and upset. She would cringe every time it seemed like anyone might touch her. She was like a wild animal sometimes, angry and scared and defensive.

She bounces in there now, being her loud and happy self. She hugs all the staff hello and then hugs them all goodbye. She laughs too loud, jokes and grins. Even when she feels lousy, like today, she always has a smile for these people.

She may be an 8-year-old brain tumor patient. She may be an 8-year-old Neurofibromatosis patient. She may be an 8-year-old chemotherapy patient. But that is not what defines her. That is not the whole of her. She is an 8-year-old little girl who has been forced into a situation that called for extra strength and extra bravery. Just like pretty much every other kid who has been put into this situation, she has taken it and made it her new normal. She has found a way to be okay with it. She has found a way to find joy in the most unjoyful of situations and has truly become a hero, embodying strength and hope and bravery.

Love to all~

Why do we call them sleepovers when there is so little sleep?

2008-11-10T19:23:00.001-08:00

A sonic boom has nothing on a roomful of 8 year old little girls. A sonic boom setting off every car alarm in a three county area has nothing on a roomful of 8 year old little girls. NOTHING!

I had five of em.

In my house.

At one time.

They were loud and giggling and squealing and screaming and just having an absolute blast! I am surprised we didn't get the cops called on us. I can just see that conversation....

"Ma'am, we have received numerous complaints about a raucous party here. Care to explain what's going on"

"Well, sir, my daughter is having a sleep over birthday party with five of her little 8 year old girlfriends."

"Ma'am, you are going to have to keep it down or I am going to have to haul you downtown."

"Ohhhhhhhh, score!!!!"

and then in my best feigned sad voice, "Ronnie, I just got arrested. Gotta run! Have fun with the slumber party and see ya tomorrow! Love ya! Bye!"

Sadly, no cops showed up to take me away. Though I am certain I could have heard them from county lock up(or is it lock down?) anyway. Seriously though, they had a ball. We had all the fixin's for your basic slumber party

There was pizza, followed by cake.

followed by present opening.

Then it was on to dancing. The girls warmed up with the Cha Cha slide.

This was followed up by an American Idol contest. Ronnie was Simon, Alannah was Paula and I was Randy. "Yo, yo, yo...wat up dawg? You worked that Hannah Montana joint OUT, man! That was HAWT!!"

There were some heartfelt ballads,

some rockin iCarly tunes.

It was then time for the full band to emerge, complete with back up singers, a lead singer and a lead guitar player. Lemme just say, my ears will never be the same.

Then it was time to tuck everyone in with the new Tinkerbell movie on and hope they fell asleep.

Everyone had a blast and it was so great to see Mandy just being a little girl, not an 8 year old brain tumor patient. The best part was, I got to see a whole lot of this dimple and this grin that make my heart sing.

I think the night can be deemed a success, except by Zachary.

"Why did you let her invite sooooooooo many little girls over here?"

Love to all~

Picture them all in their underwear

2008-11-07T11:26:00.000-08:00

It has been a stressful week. Chemo happened a day early this week to accommodate an MRI on Wednesday. Then just for a little added stress, Mandy was running a low grade fever for a couple of days. Poor baby even got a flu shot this week. Good times.

The good news: chemo went well. Her blood counts were good. She was a little sicker than usual afterwards this week, but nothing a little Zofran can't handle. Her MRI went well also. The results are in and everything was stable and unchanged. Everything is the same size and everything that enhanced with contrast before still does now. I still continue to hope for shrinkage. But, as I have said before stability may be the best we can hope for.

Mandy had a rough week this week. I wasn't sure if I would be able to make it to the Evening of Hope tonight. The Evening of Hope is a dinner put on to help expand the Angel Program, a network of businesses that step up and volunteer to assist families in medical crisis.

Here's where this gets scary for me. I have to speak. Not like, "Hi, my name is Natalie. It's nice to meet you." Nooooooooooooooo, I have to speak. As in speech. With a microphone. And possibly a podium. To three hundred strangers. Well, okay, I will know probably 20 people there, so to 280 strangers. But still? YIKES!

I have no problem talking...do it quite well. Do it a lot. But this.....oh my. It's hard to cut your heart open and lay it all out there. In front of strangers. 280 of them. That's what I am trying to do in this speech. Did I mention the 280 strangers?

So, here is what I have written to share with these people tonight. Hope I don't puke. Or sob like a two year old. (I so am not a pretty Demi Moore in "Ghost" kind of cryer. No, people, I am a snot running down my face, red eyed, puffy ugly cryer.)Or fall out of my dress.(Could happen.) Or trip and go splat headed up to the podium.(I'm darn near 6' tall. My husband is 5'7". Suffice it to say, I don't wear heels all that often. Or forget what I am supposed to say and stumble around on my words like a drunk.(Cuter when actually drunk than when merely a sober idiot.)

Here goes....tell me what you think.....

My youngest daughter, Mandy has a brain tumor. That is still a very hard sentence for me to say. My 8 year old daughter has a brain tumor. It is a horrible string of words to have to put together.

Mandy is a beautiful little blonde bombshell of a girl. She loves all things girly. Pink is her be all, end all, very favorite color. She would always rather wear a dress, the pinker and sparklier, the better. She loves music and loves to sing. She is quite shy, until she gets to know you and then you can’t shut her up. She has a voice that projects across a crowded room. You never have to look for her, just listen. And you will always find her. She always has an opinion. She has a momma's heart and loves to baby stuffed animals and babydolls. She has a brain tumor.

She was born with a genetic condition called Neurofibromatosis Type 1, also called NF. This is a disease that means her DNA lacks a tumor suppressor gene, so anywhere in her body tumors can grow at the nerve endings. In Mandy’s situation, all of the tumor growth has been centered in her brain. Most of the time, the tumors are benign, however sometimes they are malignant. In Mandy’s case, we are fighting a tumor on her optic nerve called an optic glioma and numerous tumors in her brain stem area that are benign, but have the potential to be catastrophic because of the location. She is currently 8 months into a chemotherapy regimen that is slated to last for approximately two years. Once a week we drive up to All Children's clinic where she receives IV chemo drugs through a surgically implanted port. These drugs make her feel miserable, the disease robs her of her chance to be like every other kid, robs my other two kids of the chance to live like every other family, I can no longer work because of the time demands associated with this battle. Our life sometimes feels like it is not our own. It is a dark and often lonely journey. I have often been left with a feeling of being alone in a crowded room of looking out and seeing normal life progress and being shocked that it continues.

That being said, this journey has brought us blessings, enormous blessings that without it our family may not have had the privilege of seeing. Every time you turn on the news, there is 15 minutes of mostly tragic and depressing information, then weather, then sports, then Leno. What doesn’t make the news is the little miracles that happen every single day. I wish it did. I wish for everyone to know the goodness of the world that we see in all of you. I wish it was shouted from the rooftops the good work that organizations like the Angel Program do every single day. I wish everyone knew, how much impact those acts of kindness and love have on people’s lives. We have been personally blessed by people’s love and kindness and generosity, but even bigger than that is the blessing of seeing all the good work being done, to all sorts of families. It is not WHAT people do, be it a huge donation of money or goods or a donation simply of time and love, but THAT they do. The knowledge that people care, that people are there, that people support your battle, that means the world. It truly isn’t what people do, it is that they do that means the most .

Other than the obvious, major illness takes two huge tolls on the families dealing with it, money and time.

We came home from about a week in the hospital back in March and our pool pump had died. Under most circumstances, at most, it might have been a curse word muttered under your breath, a swift kick to pump and then a call to the repair man. For us, that day, it was just one more thing that we couldn’t deal with. We had neither the money nor the time. A friend told me about the Brandon Foundation and sent Liz and Natalie our information. These two dynamic women showed up, armed with love and faith and asking for a to do list. In a matter of a week, our pool was fixed, the water balanced and just in time for Mother’s day. Our family and another family battling pediatric cancer spent the day splashing and playing and relaxing. What an amazing gift that was. The knowledge that someone, or several someone’s cared and wanted to help was the biggest blessing of all though.

We needed a ceiling fan installed in my oldest daughter’s room. Again, no time and no extra money. Again, in swooped an Angel from the Foundation, who said, we can’t fight the medical battle for you, but let us take this one. And just like that it was done. This same angel took it upon himself to adopt every other maintenance item around our house that needing tending to. He even went so far as to drop off a gallon of milk one day when I needed it. A simple gesture, sure. But, on that day. At that moment. Not something I could accomplish myself.

All of these things could not happen without the support of all of you. We keep a website about our daughter, to keep people updated about not just her, but of our other two children as well. The headline at the top of it reads, “One little girl battling NF and optic glioma, with an army of love behind her.” The Angels from the foundation, Natalie and Liz and all of you who support the great work the Angel program does are part of that army. It is a huge army encompassing family, friends and even strangers. From the bottom of my heart, I am so thankful for all the Angel program has done, for us and so many other families like ours.

It is easy to make a difference. Your investment may be small. The difference it makes is huge. A well-timed gallon of milk can do as much good as anything else.

I would give anything to fight the battle for my daughter, to take away the pain, the fear, the horrible drugs that are meant to heal but leave so much havoc in their wake. I would give anything to take that on for her. I can’t. I can’t take that battle from her anymore than you all can take the battle from us. I can hold her hand, love her, support her and make sure she absolutely knows she is never, ever alone. Everyday, the work that you all do does that same thing for our family and all the others you help. You can hold someone’s hand, bring a dinner, weed a flower garden, make a mortgage payment, help with groceries, the list goes on and on. But you can take a bit of their burden and carry it for them. Liz, Natalie and the angels who have helped our family, have made sure to let us know we are not alone. They, and all of you who support the Foundation and the work they do, are all part of that army of love behind our little girl. I thank you for that, from the bottom of my heart.

Love to all~

This post brought to you by candy and Canon

2008-11-02T17:06:00.000-08:00

8 kids in costume+
5 adults+
1 pitcher of sangria+
a ton of candy=
a happy Halloween!

I am lazy tonight, so rather than struggling to come up with something worthy of reading, I will leave you with some pictures.

Hope your Halloween was way more treats than tricks!

The whole motley crue of children

It was like herding cats to keep all these kids together. Herding cats, people.

Trick or Treat!!!!!!!!

Everybody was in costume!

The evening was a treat for everyone!

We have a stressful week ahead, including an MRI day and a chemo day, so it was great to kick back with good friends, hang out and relax.

Love to all~

Stuff

2008-10-30T09:44:00.000-07:00

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

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

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

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

Love to all~

Sugar high

2008-10-26T20:12:00.000-07:00

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

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

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

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

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

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

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

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

Aliens gotta eat too.

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

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

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

had some face painting,

rode a train,

and met some animals from Lowry Park Zoo.

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

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

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

Love to all~

HAPPY 8TH BIRTHDAY, MANDY

2008-10-23T08:45:00.000-07:00

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

More later, I promise!

Love to all~

Pre-birthday birthday

2008-10-22T11:07:00.000-07:00

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

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

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

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

One of Mandy's super favorite nurses, Miss Emily

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

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

Love to all~

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

2008-10-21T21:37:00.000-07:00

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

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

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

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

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

THIS.FREAKS.ME.OUT.

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

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

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

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

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

Love to all~

Pitiful

2008-10-21T06:28:00.000-07:00

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

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

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

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

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

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

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

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

Ahhhhhh, my boy is now a man.

Love to all~

The kindness of strangers and not-so-strangers

2008-10-17T20:49:00.001-07:00

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

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

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

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

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

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

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

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

Love to all~

Color me surprised

2008-10-15T21:11:00.000-07:00

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

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

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

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

Love to all~

Wednesday. Like Friday, only sooner

2008-10-14T18:38:00.000-07:00

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

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

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

And then

IT HAPPENS.

The lights go out.

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

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

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

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

Why?

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

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

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

Love to all~