Saturday, December 12, 2009

The big night

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

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.

Friday, December 11, 2009

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

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.

Thursday, December 10, 2009

Mandy and Poodle's California Adventure

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.

Monday, November 23, 2009

Hope for Anissa

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.

Saturday, November 7, 2009

Flu-like behavior

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.

Friday, October 23, 2009

Happy Birthday!

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~

Thursday, October 1, 2009


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~

Saturday, September 26, 2009

Next week

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~

Tuesday, September 22, 2009

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

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~

Monday, September 21, 2009

It's after midnight...

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

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.

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

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~

Sunday, September 20, 2009

Update from Room 261

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.
ANC 1920(oddly high), Platelets 339, WBC 4.95(oddly high)

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

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

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~

Monday, September 7, 2009

The past week

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~

Monday, August 24, 2009

Yesterday... not the Beatles version

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 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~

Friday, August 21, 2009

A big favor

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~

Monday, August 17, 2009

Michael Perez

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~

Thursday, August 13, 2009

Contest for Poodle and Mandy

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~

Wednesday, August 12, 2009

And then there were seven...

We are down to 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?


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~

Friday, August 7, 2009


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 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

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.", 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~

Tuesday, July 28, 2009


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 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~

Monday, July 13, 2009

Where's Waldo?

We were all all over the map this last week.


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~

Saturday, July 4, 2009

15 years ago....

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~

Wednesday, July 1, 2009

So much to say, so little words to say it

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.


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~

Monday, June 8, 2009

What love is....

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~

Friday, June 5, 2009

Carnival tomorrow!!

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~

Monday, June 1, 2009


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~

Sunday, May 31, 2009

Some good old fashioned family summer fun

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!!

Friday, May 29, 2009

Old English

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.


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~

Thursday, May 21, 2009

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

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.


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~

Sunday, May 17, 2009

Star Student

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, 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 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, 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~

Thursday, May 14, 2009

My girls...

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~

Monday, May 11, 2009

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

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, April 20, 2009

Monday, Monday

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~

Sunday, April 19, 2009

A timeline in three time zones

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~