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~