In praise of my husband

With the girls hovering around various levels of illness the past two weeks, I have begun to increasingly feel like a rat in a cage.

A gigantic, crampy rat in a cage full of smaller, constantly chattering mice.

So Chris stepped up to the plate yesterday and released me out into the wild. "The wild" being Bed Bath and Beyond, and then the Towson mall with Vanessa.

Do you know what it feels like to step into a foul-smelling, cramped mall bathroom and get a surge of happiness because you realize that you don't need to finangle any little bottoms (with layers of toilet paper, let's hope those pants don't touch the floor, please don't fling your hair into the toilet when you pull them up!) into the stall with you? It's heaven.

So, I was MIA for a good four or five hours when I finally got a call from Chris, politely asking me to stop by the store to get Coke for Claire. Because she had spent the whole day throwing up. When I left the house, Claire hadn't even begun to sprout a fever (and yes, I checked - part of the daily routine lately has been a temp check for everyone upon waking.) Chris spent all day bent over the toilet holding Claire's hair out of her face, just so that I could get a little break.

Forget flowers and schmaltzy Hallmark cards; this, young ladies out there, is what true love is all about.

another man down

Katie still has a fever.

Claire spent all day vomitting.

Will Abbie make it? Tune in to find out!

Update on our health

Beth's fever is down, and her appetite is returning. By tomorrow she shouldn't be contagious anymore.

Abbie is still fever-free.

But Katie just said that her belly hurts. And her temp was 100.9.

$@#%!

The Magic of Bob Books, or How Beth is Incredibly Smart

Beth is going a little stir-crazy so I've been pulling out all sorts of things that were still in storage, in an effort to keep her entertained. I pulled out the "Bob Books" we used to re-inforce Katie's reading lessons, and to my surprise Beth was quickly able to read through the entire first box!

I've done nothing with her this year. She's gone through letter sounds in her kindergarten class, but they hadn't really begun to go through those in earnest until after Christmas. We went through the first book together, and I showed her how to mash the letter sounds together to sound out the words. And that was all it took - like magic, she suddenly could read!

She's excited beyond belief, of course, and has been doing nothing but reading the Bob books all day. I'm excited, too. I can't believe how easily she picked this up, and how quickly she's picking up new concepts. I'm so proud of her, and already I can't wait until she's ready to start The Wind in the Willows on her own!

Strep Throat

So that's why Beth wasn't getting any better.

Prayers that Abbie can avoid this would be appreciated!

First successful quarantine

I probably shouldn't even post this, since I'm officially waiting until tonight to declare victory. But, things are looking pretty optimistic.

Three days ago, Beth came home from school with a raging fever. This sort of thing is never fun, but Abbie's condition puts a whole new spin on things. Her blood counts are down - not so much that it is alarming, but enough that her resistance to infection has been impacted. Plus, her broviac puts her at a much greater risk of sepsis; even a small infection can quickly travel to her heart and put her into septic shock.

So, we had to try to keep her healthy through Beth's illness. Not easy, especially when Abbie was so delighted to have Beth home from school that she wanted nothing more than to hug her all day long. To make things more complicated, we were having our kitchen painted, thus putting the kitchen out of use.

So, we put a movie on in the basement for Abbie and Claire, and Beth was put into quarantine in my bedroom (the only other room in the houe with a t.v.) Then the power went out. No movies for anyone. So we had Abbie and Claire, sitting around the increasingly frigid basement and Beth, stuck up in my bedroom with nothing to do but look at books, and occasionally run to the bathroom to vomit. Oh, and since we have a well, when the power goes out so does the water.

We made it through, though. Beth finally recovered and was able to go back to school today, and so far Abbie is showing no signs of developing a fever.

Thank God for small miracles. :)

Update:

Beth threw up in school again yesterday. I have no idea what is going on with her - she had no fever, although her temp went up a little by the evening. We are going on over a week now of this: she throws up, spikes a fever, then seems to go back to being perfectly fine. Until she throws up again. Ugh.

I am a prisoner in this house.

She knows

Twice now in the past month Katie has directly asked me, "If Santa Claus was not real, you would tell me, right?"

Both times I took advantage of the usual family chaos to avoid answering her. But the time had come, both Chris and I agreed.

We were nervous about this, partly because Katie is scrupulously truthful and might not understand why we had "lied" to her, partly because learning the truth had been so sad for both of us and we assumed it would be a similar experience for Katie.

So, yesterday, Chris took Katie out to get ice-cream. And he leveled with her about Santa, the Easter Bunny, and yes, even the Tooth Fairy. Katie's reaction, though, defied every one of our expectations. She sighed, and nodded, and said:

"Well, good. It makes me more comfortable to know that there aren't really people who come into our house when I am asleep."

She is not angry, she is not bitter, she is not even sad. No, Katie is relieved. It's a well-worn phrase, but I guess the truth really does set you free, even in the most unexpected of circumstances.

Found on the floor while sweeping....

Jalen's File
by: Katie Mlinek

Katie loves Jalen in the way like I like him but I like him so much you can say you love him in the way of like.

Our story began 8 years ago this very day....

Eight years ago today, in the middle of a blizzard, Chris and I began our life together. My mom had sent away to have masses said for us at the Shrine of Our Lady of the Snows, so I've always viewed that snowfall as a sign of blessing for our marriage. Although, on a practical level, it was pretty inconvenient (but it made for some really great snowboot-themed wedding pictures!)

As inconvenient as the snow was, it actually set the tone for things to come. We have been blessed beyond measure in our marriage, but our blessings always tend to come in strange ways and inconvenient packages. Almost every event in our marriage that at first seemed to be an overwhelming burden has brought us the most unlooked-for, unthought-of, but ultimately necessary blessings. Babies born in what conventional wisdom would deem bad times, too close together, too often. Chaos when we thought we needed serenity. Serenity when we thought we needed excitement.

Who are we to know what is best for us? I don't know that I would have planned for my life to go this way - toddler with cancer, kids in public school, five times the amount of kids all our friends have. I haven't written that best-selling novel I had planned on. Chris hasn't set the world on fire the way it was predicted he would. But......I love my husband with all of my heart. I admire him, I respect him; he is not only the best friend I have in the world, he is my model of virtue, the bright spot in my day when things are bleak. And, improbable as it seems to me, he feels the same way about me. This is something; something really rare, something really good, something I am proud to be a part of.

So, happy anniversary Chris! I don't know what other surprises are in store for us, but I know that you will be beside me when they come. And that is all that matters.

Happy New Year!

We let the girls (minus Abbie) stay up until midnight last night, so this was a slow-starting morning. So slow, in fact, that we still - at 5pm- haven't really begun the day. We're having a lazily cozy, slightly frowzy start to 2007. Everyone needs baths, but nobody has had one. Chris and I, and Beth, are still in our pjs. I think we may have potato chips for dinner.

Last night was really nice, with the Lobers coming over to ring in the New Year with us. The Lober small folk are more used to late nights, and I was afraid that my girls would not fare as well into the wee hours. But they were fine - a little hyper, but who can blame them with all the candy and chips they were eating? And nobody puked from the excess, which was both unusual and very cool.

So today is spent in recovering - a lot of laying around , reading books in front of the fire, nibbling on whichever leftovers still seem vaguely appealing. Like I said, lazy and cozy, and really very, very comfy and enjoyable. Here's to a 2007 filled with days like this: nothing to do, and nowhere to go, happy and safe at home. :)

Why I will probably need a C-section

On the 1st day of Christmas, my true love gave to me - about a million cookies
On the 2nd day of Christmas, my true love gave to me peanut butter fudge
-and about a million cookies
On the 3rd day of Christmas, my true love gave to me candied sweet potatoes
-peanut butter fudge
-and about a million cookies
On the 4th day of Christmas, my true love gave to me Cheerwine soda
-candied sweet potatoes
-peanut butter fudge
-and about a million cookies
On the 5th day of Christmas, my true love gave to me EXTRA STRENGTH TUMS!!!!
-Cheerwine soda
-candied sweet potatoes
-Peanut butter fudge
-and about a million cookies
On the 6th day of Christmas, my true love gave to me moist lemon pound cake
-EXTRA STRENGTH TUMS!
-Cheerwine soda
-candied sweet potatoes
-peanut butter fudge
-and about a million cookies
-On the 7th day of Christmas, my true love gave to me leftover ham
-moist lemon pound cake
-EXTRA STRENGTH TUMS!
-Cheerwine soda
-candied sweet potatoes
-peanut butter fudge
-and about a million cookies
On the 8th day of Christmas, my true love gave to me homemade caramels
-leftover ham
-moist lemon pound cake
-EXTRA STRENGTH TUMS!
-Cheerwine soda
-candied sweet potatoes
-peanut butter fudge
-and about a million cookies
On the 9th day of Christmas, my true love gave to me cornbread stuffing
-(we'll never eat it all)
-homemade caramels
-moist lemon pound cake
-EXTRA STRENGTH TUMS!
-Cheerwine soda
-candied sweet potatoes
-(I think I'm gonna puke)
-And about a million cookies
On the 10th day of Christmas, my true love gave to me the rum-balls no-one will eat!
-cornbread stuffing
-homemade caramels
-leftover ham
-(What's that fish smell in the fridge?)
-EXTRA STRENGTH TUMS!
-Cheerwine soda
-candied sweet potatoes
-(thank God that's almost gone)
-And about a million cookies
On the 11th day of Christmas, my true love gave to me 1 pound of M&Ms
-(Here comes diabetic shock)
-cornbread stuffing
-(am I the only one eating this?)
-leftover ham
-(the lemon cake is gone)
-EXTRA STRENGTH TUMS!
-Cheerwine soda
-candied sweet potatoes
-peanut butter fudge
-And about a million cookies
On the 12th day of Christmas, my true love gave to me four extremely wired girls!
-1 pound of M&Ms
-the rum-balls no-one eats
-cornbread stuffing
-(something really smells wrong in here)
-leftover ham
-(Is that a loaf of apple bread?)
-EXTRA STRENGTH TUMS!
-Cheerwine soda
-candied sweet potatoes
-peanut butter fudge
-and a gestating 12 lb baby!!!!

Merry Christmas!!!

Merry Christmas to All!




And to all a good night:

Best wishes to everybody!

Excerpts from Katie's "Book about Me"

I wonder why the sky is blue.
I wonder who stole my dessert one day.
I wonder when it will rain.
I wonder if my dad's family is moving.
I wonder whether the clouds are blue or white.
I wonder how come it rains.
I wonder where my dad works.
I wonder what kind of fish live in deep, deep, deep water.

And now please keep in mind that she in only 7, and that even Fathers of the Church like St. Augustine went through some.......unorthodox phases :

If I could make a wish for the world it would be letting girls be priests too because I think it is not fair that only boys can be it
so that girls would think it would be fairer then.

Time to whip out my Blessed Edith Stein and try to channel this in some sort of positive direction, I guess.

Finally some help!

I know, I know, I need to get off of my lazy rear and download some pictures for a "Happy Birthday Abbie!" post.

But in the meantime, I just found some ammunition in my quest to squeak Katie through this Christmas without having the Big Santa Talk! :-p

New Haircut!

I was tired of constantly combing Claire's hair, only to have it immediately revert back to it's unruly ways. She has a little touch of Pig-Pen in her; she can look absolutely filthy merely minutes after taking a bath. So about two weeks ago, when we had an hour to spare between dropping the big girls off at school and Abbie's physical therapy, we made a quick trip to the hair saloon. And I love the results! Claire now looks cute, neat, and at least cleaner all the time now.
And she likes it because it makes her look "like Stephanie from Lazytown." (Note: this show is very passe around here. We haven't watched it in months, yet somehow Stephanie seems to have become the standard of beauty for these girls. Um, in case you haven't seen it, her hair is pink. Should I be concerned?)

Anyway, I think she looks adorable and I wanted to share. Enjoy! :)

We knew this already, but now it's official!

Katie is a Terrific Kid:


(Admittedly, this is not her best picture but it's the only one I took.)

Many years ago, when Katie was still a wee babe, I noticed a bumper sticker that said, "My child is a Terrific Kid at Blah-Blah School!" I turned to Chris and we both started to laugh at how silly and meaningless it was. "All that sticker tells you is that their kid isn't an honor student," Chris said. I heartily agreed.

Fast forward to mid November of this year (I'm a little behind on posts), and I opened a notice from Franklin saying that Katie has been chosen as a "Terrific Kid" for the month, and that we were invited to a little ceremony to honor her and the other students chosen. Guess we were wrong, it isn't completely meaningless after all!

Katie was very excited about the whole thing, and very, very proud. She paid very special attention to how she was behaving because she wanted to be a good representative of what a Terrific Kid should be. It was adorable to watch her.

So we went to the ceremony, where a child from each homeroom gave a short speech to show how they embody the "value of the month" (respect, in this case.) Katie began her speech by reciting the definition of "respect," and thus her future rhetoric style was begun.

And now I am going to be cynical. This was a big deal for Katie. She took it very seriously, and was sincerely honored to have been chosen. We were (are) very proud of her; honestly, the girl absolutely deserved it! But I realized the rub right away, and it only took Katie a month to see it for herself. A "terrific kid" is chosen from EVERY homeroom EVERY month. That means that out of 20 kids in a homeroom, almost half of them will be named a Terrific Kid by the end of the year. Seriously, if you can't score at least one TK award in your elementary school years you have to actually work at being a loser.

In the words of the Incredibles, "If everyone is special, that means that no-one is special."

Today, Katie came home very perturbed because one of the boys chosen as this month's TK pushed her down on the playground. She can't understand why he was chosen, when his actions have often showed a complete disrespect for "the value of the month." So now Katie is in the uncomfortable position of suspecting that her "reward" doesn't mean as much as she thought it did. She's starting, and this is what makes me angry, to feel that she was foolish to be so proud of showing the "value of respect," because she now suspects that the powers-that-be don't actually care about rewarding the most virtuous (and here's another sticky point, of course - they aren't rewarding virtue. They don't even officially recognize virtue. It's all about "values," whatever ideals happen to be in vogue at this minute. Who the hell decides what a "value" is anyway? Isn't it by definition subjective? I value chocolate-loving, but no-one has yet to offer me a reward for my natural predilection, nor should they. What is inspiring is that by which we rise above our natural tendencies, not some watered-down hooey that claims we should be "good people" without having the guts to explain what makes a person "good.")

So, here we are. Katie is still proud of her award but in a muted, confused sort of way. I've put the bumper sticker up on the fridge, because I am proud of what a great daughter, student and sister Katie is. But I will not affix it to my bumper, because I refuse to give in to this herd mentality. My child is special, and maybe some people might think that makes their kids less special but they couldn't be more wrong. It just means that they haven't taken the time to figure what extraordinary tidbits are lurking in their own children.

It is a good thing that I am not married to Henry VIII

Today was the Big Sonogram. My sister Rachel was positive that we are having a boy. Katie was countering that, logically, given the number of girls we already have (4) compared to the number of boys (0), it is most likely another girl. Chris thought, for the first time since Katie, that a boy was at least a possibility. I think it's safe to say, though, that his family believes that we are destined to have all girls.

.......I suppose a drumroll would be appropriate...........



It's a GIRL, of course!

So, are we obligated to name the baby Therese? Or maybe I should draw from my literary background and name the baby Lydia. (If you've read the book, this is obviously a joke!) In any case, I guess we're in good company.

And at least I don't need to buy new baby clothes. :)

I have a huge backlog of stories to tell....

But first, here's one from this morning illustrating why I've been too tired to write this stuff down lately:

Abbie woke up last night at 1 am, then again at 2, 3, 4, and 5am. At 6 I threw her into bed with us, where she remained quiet for about twenty minutes. Then she proclaimed, "I take good nap!" which is her way of officially declaring that she is ready to begin the day.

I grunted and rolled over.

She gently patted my head and said, "I love you Mommy. I really love you."

So I grudgingly fell out of bed (that is really the most accurate way to describe it.) As we made our way through the still pitch-dark house, she again patted me sweetly and cooed, "You're so cute, Mommy!"

Yeah, right, kid. You're not slick enough (yet) to completely sucker me. But it did buy her enough goodwill to procure a cup of milk before I collapsed on the couch, closing my eyes against the flickering light of "The Upside-Down Show."

Addict

Claire is really jonesing these days. Our post-Halloween ritual has been set in stone from day one, modeled after my childhood memories of post-Halloween candy consumption.

This means that we celebrate All Saints' Day by gorging on candy from morning until night. After that, however, we have a strict 2-peices-of-candy-a-day rule, once after lunch and once after dinner (if they eat dinner.)

Claire just can't seem to get it this year, though. We did not have this problem last year, but now this little one wakes up with an intense craving for candy that lasts until we get a small respite when she goes back to sleep. Despite the fact that I have NEVER ONCE given in and let the girls eat candy before breakfast, Claire asks me for some every single morning. And she seems to believe that continued nagging might be effective in this situation, even though it never has to date.

Yesterday, I realized that we were dealing with something very serious. She asked for candy before breakfast: denied. She asked for candy during breakfast: denied. She asked for candy after breakfast: denied, and threatened with a time-out if she asked again.

Then I ran into the bathroom for a quick shower, feeling fairly confident that the issue had been handled, at least until lunchtime. As the water ran, though, I heard a tiny voice outside the door to the bathroom.

"What?" I yelled out the door. A mumbly voice answered something like "whiny whiny whiny MOMMY, whiny whiny whiny."

So I hopped out of the shower, unlocked the door, and then hopped back in. I then told whoever it was to open the door so that I could hear her, assuming that Abbie had stolen a toy, or someone wasn't playing with someone else....the usual stuff that suddenly becomes urgent when I want ten minutes to take a shower.

The door opened, and a spray of unruly brown hair peeped around the doorknob. A tiny voice asked, "Can I have some candy now?"

Does Hershey sponser some kind of rehab? At least we are now down to the yickiest leftovers, and hopefully once Claire gets past the shakes things will calm down.

Things that make me happy

1- Spending an hour wandering around a bookstore, all by myself.
2- Finding a new book of short stories by Susanna Clarke, author of this book
3- Coming home to the deliciously smoky smell of our first fire blazing in the fireplace!
4- Old Crow on On Demand!!!!
5- The really fake fire on the electric heater we have in the basement
6- Feeling the baby kick
7- "Fun size" snickers bars
8- My new tea pot's perfectly shrill shriek when the water boils
9- A clean house, courtesy of Merry Maids (and Uncle Kevin and Aunt Sally!)
10- Discovering that there is actually one more Jane Austin book that I haven't read!!!!
11- Anticipating the moment when I can curl up on the couch and read it!
12- Realizing that we need to paint the kitchen green, not blue, and imagining what it will look like when we do.
Bonus 13- Anything with pumpkin in it!!!

Just treats, no tricks

We went to the Lobers' to trick-or-treat tonight, and it worked out perfectly. The kids had a great time, and tore through the Lobers' development like a little mob. . (You don't actually even need to give them the sugar, you know, for kids to become hyper and crazy. Just the promise of it is enough to jack them up.)

So here are a few pictures of our night. Happy Halloween everybody! :)

this space intentionally left blank

I decided to pull my whiny, melodramatic rant off of here. The world will be a better place for it. Or, at least, my blog will be. :)

Angels with Sticky Faces

Katie found an angel costume in a bag of hand-me-downs today, and she immediately put it on and began floating around the house proclaiming heavenly things in a sing-songy sort of way. As I was getting ready to do the elliptical machine, Katie was standing in the middle of the basement singing, "You must all share your things.......You must all be kind to each other.... You need to love God...." Nobody was paying her any particular attention.

Fast forward about 15 minutes (I can never go long on the elliptical without being interuppted), I had taken my headphones off and noticed Katie standing over Beth, who was innocently enough laying on the floor and drawing. Katie was angelically singing:

Beth! I fear that you are going to hell!
Oh dear Beth, you are going to go to hell!

Beth, being Beth, didn't even realize that Katie was there. And Katie, who didn't previously know that telling someone they are going to hell is included in "bad words," was immedietly enlightened. And I found myself again stumped by the philosophy of my children. Do angels know, before a person dies, if they are going to hell for certain or not?

Never once before having children did it occur to me that I would one day sit at the computer with my 7 year old daughter, googling variations on "angels and damnation." But there I was. It's an interesting life.

$32 in pumpkins

This is what happens when you foolishly say, "Pick whichever pumpkin you want!"
Beth's alone weighs more than she does, I think.

Katie's birthday- a picture retrospective

Birthday Celebretion: Part II happens in a week, with the Discovery Zone and the Beloved Jonathan!

Did you know?

A bag of flour, when emptied upside-down on the kitchen floor by an unnamed child, makes a really big mess. It is much more tricky to clean up than you would think, especially when said child runs in a panic through the pile of flour, leaving little white footprints to follow her sobs throughout the house.

And when another child wakes up prematurely from her nap (because of the sobs and the pounding footsteps) and also begins to scream, and you frantically try to fill her cup with milk to calm her down because you just realized that it is almost time to pick the other children up from school (because you lost track of time, you see, sweeping up clouds of flour that resettle into even more piles of flour), and you spill the milk all over a pile of flour still on the floor.....well then, you have made glue. Except that this glue smells kind of funky. And I really wasn't planning on gluing anything onto the kitchen floor (which, by the way, is wood - like, real actual hardwood.)

All of the newly expecting mothers I know right now - write this down and remember this. Because they will not tell you these stories in your parenting magazines and "what to do when" books. And they certainly will not offer advice on how to scrape homemade glue off of your floors.

You know the meal you've prepared is not a winner when....

....your 21 month old daughter says, "I don't like this! I need to throw in garbage."

Have iTunes?

I made a CD of songs that pertain to Abbie's situation. It's available on iTunes through imix. I thought I'd post the songs, because taken all together I think it really captures the way this all feels. A word of warning, though! We are lovers of Rock here, so....uh, some of these songs might not appeal to everyone. :)

The Tumor Mix

1- Theme from Blinking Lights..............................The Eels
2-Blackbird...............................................................CSN
3-Bad Day.................................................................Danial Powter
4-Wires......................................................................Athlete
5-Wonder...................................................................Natalie Merchant
6-We're All in this Together....................................Old Crow Medicine Show
7-Sometimes You Can't Make it on your Own.....U2
8-I Will Keep the Bad Things From You...............The Damnwells
9-The Funeral...........................................................Band of Horses
10-Alive......................................................................Pearl Jam
11-Daughter with It's Okay.....................................Pearl Jam (Live from Quickens Loan Arena)
12-Glosoli....................................................................Sigur Ros


A bit of an explanation:

3- This is Abbie's favorite song, hands down. And it is pretty relevant, since she's had quite a few "bad days." She started asking me to sing this to her in the hospital, and it's now a ritual (that we go through many, many, many times whenever we go back.)

4 - this song is about a baby born prematurely, but the lines "Running....down corridors....got to get to you, got to see this through" explain exactly how I feel any time I'm obliged to leave the hospital for a bit. And I love the lines, "I see it in your eyes, I see it in your eyes....You will be alright."

5- This is really more a tribute to my cousin, Mary, who passed away as an infant. I remember hearing my aunt and uncle say that it made them think of her, and it has made me think of her ever since. Mary has been in my mind constantly ever since Abbie's tumor was first diagnosed, and I ask her to intercede for Abbie all of the time. I have to believe that her innocent little soul praying for my innocent little child has to be very powerful.

8- This song is more of a love song, but I really identify with the desire to "keep the bad things from you."

11- Pearl Jam only plays this live, but the "It's Okay" segway has always been a favorite with our kids. This is another song I sing to Abbie all the time when we are in the hospital. The main lyrics are "It's okay...It's okay, you don't have to run and hide away. It's okay...It's okay, you know we've all seen better days."

12- This song was on constant repeat in my mind during both of Abbie's major surgeries. It's not in english, but it is clearly a song about a journey -- a long, difficult journey. The video shows children marching over mountains until they get to a cliff, and jump off..........and they all fly away. It is beautiful, and poignant, and one of my favorite songs of all time. And for me it reflects the hope I have that Abbie is going to be okay, and stronger for this ordeal. And the hope, or really the conviction, that no matter what she is in good Hands.


So, anyways, here's the link to the imix. If it doesn't work, I can email a link to you through iTunes. It's not worth it, though, unless you are actually going to buy all of the songs. But I thought I'd put it out there, just in case. :)

Here's the link from my email:

Congratulations, your iMix "Soundtrack to living with an ill child" has been published in the iTunes Music store at:http://phobos.apple.com/WebObjects/MZStore.woa/wa/viewIMix?id=201489222

Hooray!

We just came home from meeting with Abbie's oncologists as well as her surgeon, Dr. Myseros, and thus far things are looking good! Finally! :)

The tumor does not seem to have grown at all, although the MRI showed some areas with increased dye uptake. That does not necessarily point to anything bad, however; it could be due to any number of things, most of them either indifferent or, gasp!, positive. Since she is doing so well physically there is little cause for concern at this point.

So, two more months of chemo and then another MRI. But we're finally starting to feel a little more hope that things will continue to go well. I was all tied up in knots on the drive to DC this morning, but when we came home I suddenly noticed what a gorgeous day it is! Thank God for the fall, and for allowing us to enjoy it with our beautiful little girls!

Beth measures my worth, and I rate pretty OK

It is kind of "cheating" to just throw up posts with quotes from the girls, but I hope it is at least amusing.

Here's one from Beth. (The best ones always come from Beth, in case you haven't noticed!)

Mommy, I think you are the second best Mommy ever! Because I think Mary was probably a little bit better.

So far, nothing to report

No word on Abbie's MRI yet. We have an appointment with oncology next Thursday, so we'll definitely know by then.

For now, here's a little story to keep you preoccupied. :)

On our last visit to the clinic at Sinai, we were sitting in the room with two doctors and a nurse, doing something or other (I can't remember what.) When Claire suddenly turned to me and said, "I don't know if you love me. Because you spank me all the time!"

For the record, I've spanked her once. About four months ago. And she was totally asking for it.

If I said I wasn't worried about Abbie's upcoming MRI...

I would be lying.

I'm not very worried, but......you know. We haven't had a "good" MRI yet, so it's hard to not be a little anxious.

Good news most likely awaits us, but........if you have a prayer to throw our way, we won't turn it down. :)

Fun with cancer

You can tell how well Abbie is doing and how small and quiet my worries about her are, by the fact that I am about to whine and complain about small stuff.

So, here I go! To begin with, Abbie is just fine. Her fever was already gone by the time I took her to the clinic. I apparently made a mistake by telling the answering service that it was "not an emergency" when I called the day her fever appeared. It's hard to switch your perspective that way -- a little fever, coming a few days after another child has had the same, really mild, illness just doesn't feel like an emergency. However, because of Abbie's weakened immune system coupled with the fact that her broviac provides any bacteria quick and easy access to her heart, any fever (even if it's below 100) needs to be treated as an emergency. I was told that any infection would take less than 24 hrs to put her into septic shock. So, we don't have the time to determine if the fever is in fact related to infection; she needs to go on antibiotics right away.

That being said, no-one really thought that she had an infection with this fever. But it's a chance that we just can't take, no matter how benign it seems. So.....here comes the whine.....we ended up spending two days at the oncology clinic so they could give her the antibiotics. (We didn't spend the night, and the actual administration of the medication took about half an hour. But, it's just the way things go there; you show up bright and early in the morning, and by the time you get away it's almost time to pick up the older girls from school. Just a lot of sitting around and waiting.) It's not a huge deal. I understand that the clinic is very busy, and I understand that the hospital pharmacy has to prioritize which medication to make -- so they guy in danger of imminent death upstairs trumps my baby downstairs, which is fine, of course. I never actually want us to be the ones prioritized; it's much better to be healthier and on the periphery than in danger and the center of attention.

But......um, spending the day entertaining two little kids in the rather dull oncology clinic isn't exactly fun. Especially when your mind momentarily went beserk, and you forgot to pack enough supplies to last four or five hours. (On day 2, I had enough food to keep the entire clinic fed for a week, but of course we ended up getting out of there about an hour earlier than we had the day before, when all I had was a baggie full of Cheeze-its.)

So, waah-waah-waah, poor us. We happened to be there when one of the nurses went into labor with her baby, though, so that was cool to hear. I hope her labor went well! Maybe I should have offered up my boredom for her and her baby.......

Apologies for the long silence.....

...... but my apparently aging back again went out and I spent the last week laying flat on my back. Very pathetic, although I enjoyed having the time to read a few good books. And found out that Chris makes a pretty good Mr. Mom!

In other news: Beth had a fever last weekend, and now Abbie seems to have it. Because of her central line, she can't have tylenol or anything, and we have to take her in to have bloodwork done. In these circumstances (where we are almost certain that she just picked up Beth's mild bug) it's looking like they will just give us some antibiotics and send us home. We'll find out for sure tomorrow, though, when I take her in.

If you have a spare prayer, we'll take it. :)

More quotes

Beth: Ow, my arm! My capable arm!


Abbie, with a laugh: Mommy! I just made a poopie noise!

Awesome prayer, courtesy of Beth

Glory be to the Father, the Son, and the Holy Spirit. As it was in the beginning, about a strawberry, world without end. Amen!

Tidbits from today

Chris: Katie, I don't want to see you get so upset when you get an answer wrong. That is what homework is for -- practice! Nobody can be perfect all the time.

Katie: You mean like how you aren't perfect in running?

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Beth: Sometimes I don't feel loved. I know you love me, I know you do. But sometimes I just don't feel loved.

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Chris(about to lay his head on Beth's pillow): There aren't any boogers on here, are there?

Beth: There aren't any boogers on my pillow. But there are a lot of tears.

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Abbie and Beth are harder to quote, because the funniest part of most of what they say is the voice they say it in. But here's a try.

Me: Abbie, do you want me to hold your bottle?

Abbie: Yes please. But be careful! Don't spill it!

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Claire: Sometimes, at night? I think that there are spiders crawling all over inside my body. Spiders all over inside my body! (It would almost be more reassuring if we could blame this on on acid flashbacks....)

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Katie: Ew! Abbie is so dirty! I'm glad I'm not a baby because they always get so disgusting when they eat.

Claire: I love getting dirty!

links...

I just figured out how to use the link section, so if you'd like me to link to you just let me know!!!

Fr. Andy, I took the liberty of linking to your blog already, just because I still think it's so cool that you are actually a priest now. I'm tempted to tell some stories about you (um, Prague???) but I'll refrain out of respect. :) I hope you don't mind being linked by a decidedly non-heady blog!

Any other takers?

see ya, sucker!

Actually, Abbie's Occupational Therapist is a wonderful woman, and she has been great with Abbie. I'll actually miss her. But she's outta here!

Yup, Abbie is doing well enough that she was discharged from OT yesterday. We'll still probably see a PT/OT through the state about twice a week, but Abbie's last evaluation has her just a month or two behind where she should be.

This is such a happy moment for us. Chris and I were talking last night about our friends' daughter, who is a year younger than Abbie, and who has recently begun to crawl. I remember when they came to visit right after Abbie's first surgery, and I realized that Ella was stronger and more mobile at 3 months than Abbie was at 17 months. It made me so sad, and it really drove home just how much the surgery had affected her.

But here we are, a mere four months later, and Abbie is back to crawling up and down the stairs and running around the house. She can totally dust Ella if she wants to!

It's crazy how resiliant she is. The OT told me yesterday that Abbie is really doing everything, naturally, that she needs to do in order to improve. I know that she is really too young to feel sorry for herself, but it is still amazing to me that she just keeps chugging away despite all of the trauma she has gone through. And she keeps smiling, and laughing, and teasing everybody with that sweet little way that babies have.

Holy cow, I love this kid.

Tricky

Today is the first Football Sunday of the season! All must now bow down to the big-screen tv, and the large men running around on it.

This is an important time for Chris. He bought all of the girls brand-new Ravens shirts, and then he hunkered down in the basement to revel in the first full day of football since last year. It's been a long, sad off-season for him.

The girls were really great today, spending some time watching the game with him downstairs but mainly playing either upstairs or outside.

And then, about an hour before bedtime, Katie revolted.

She did it subtly. It could not have been more smooth had she been a criminal mastermind who had spent months planning it with a crack team of other criminal masterminds.

I was working on assembling a bookcase in the living room, and Katie quietly slipped away and went downstairs. Where she told Chris that she thought I needed his help. And then casually mentioned that she might flip the channel - just for a minute - while he was away.

I didn't need help. Chris came upstairs just long enough to ascertain this, and then he immediately realized that he had been snookered.

Maybe she really did think that I needed help. I was using tools and stuff, and maybe that seemed like the sort of thing a pregnant woman shouldn't be messing with alone. Or maybe she just wanted to catch up on a few minutes of Animal Planet. It was probably a mixture of both. But the fact is, no-one could have read the situation better and then turned it to her own advantage better than Katie did. Except Chris.

This may seem like I am bragging about my child being sneaky, but that's really not the case. I know she sincerely thought I needed help. But when she acted on her assumptiom, she knew it was only an assumption and she knew it would buy her a few minutes with the t.v. And it makes me laugh, because that is pure Chris. She may not look just like him, but she more than any of the girls is her father's daughter. Chris writ small, and female, and way too smart.

Microcosm

Chris: All I want is to get a little bit of peace in this world.

Me: I think having five kids was the wrong way to go about that.

This happened last week, but it still has me giggling

One good thing about the older girls going to school is that Claire and Abbie have suddenly become Big Buddies. Previously, they were really more Tolerant Rivals, so I'm glad to see the change.

My mom asked me the other day if I have to worry about Claire overpowering Abbie, but the truth is that, despite her sweet and gentle demeanor, if there is any bullying going on between the two of them I can almost be guaranteed that Abbie is not the victim.

For example:

Last week the two younger girls were playing in the living room while I was helping the two older ones with homework. At some point Claire decided to abandon the game, and she went to the basement door to go downstairs. Abbie was following right on her heels, though, and slammed the door shut before Claire could get through. So Claire opened the door again, and again Abbie slammed it shut. This happened three or four times before Chris, who was in the basement and thought that Claire was just playing with the door, yelled up to her to leave the door closed.

Claire moaned at how unfair it was, but the look on Abbie's face said it all. She knew she was the victor. Abbie very gently took Claire's hand, and in a tone that implied just accept it and be a good loser, said to Claire, "Come on, dear" and led her back to the living room.

And Claire went.

Our family is beginning to cramp our style....

I just realized today that we really need to change our Sunday morning mass routine.

We have always been the types who sneak into the church mere seconds before the processional begins. (OK, in the interest of honesty-- sometimes it's during the processional.) We have a hard time gettting there early. I don't really even know why; it has always been like this, even before the advent of our children. Even before marriage -- I barely made it to mass on time back in the days when the only person I needed to concern myself with was me. I have some very fond memories of running through campus in high heels, trying to maintain modesty while still achieving maximum speed. (This differs from my weekday college memories, where I was still running, but in sweatpants and tennis shoes, and I had farther to go.)

So, we have this problem. But now, instead of slipping into a pew in the back, we are faced with a more complicated scenario; we have to find a pew that will fit ALL of us, and we have to somehow do it as unobtrusively as possible while herding four (and soon to be more) squirrely little girls through the quiet church.

It can't be done. Let's face it, it just can't.

We have to change. Get our act together. Organize our lives. Get on the ball and all that.

Darn it.

First day of school.....a little late

So far, so good! Eh, more or less. Katie came home from her first day very happy, and claiming that she had already made a friend. Beth had a great time, too, although it's nearly impossible to get any details from her.

More later, but I wanted to get this picture up! :)

Scenes that warm the heart...

Peeking my head into the living room tonight, I saw Abbie, who was very tired tonight, laying on the floor. Beth had put a little pillow under her head, covered her with a baby blanket, and was just about to lay down beside her to read her a story.

I love it when they take care of each other!!!

Just for my own amusement

Let's see if this works

Good answer

Yesterday, Abbie was doing her "Mommy pilllow!" routine, where she insists that I lay with her on the couch. I was getting frustrated because there were things I needed to do, and at one point I snapped, "Abbie, I am really not that great!"

Beth, who overheard me, immediately replied, "Well Mom, to her you ARE"

Not the answer we were expecting

I am not feeling very well today. Maybe it's the death-throes of my twenties, maybe it's the sleepless nights due to the steroids that Abbie is on, or maybe, just maybe it's the baby making me sick.

As I was laying on the couch in a stupor this afternoon, after conspicuously and rudely crashing in front of a friend who was here visiting (and who had so nicely brought us dinner -- I'm so sorry I was grouchy, Vanessa!), Chris jokingly told the girls that the baby was being naughty in my tummy. He loves to bait them, so he turned to Claire and asked her, "Should we spank the baby? That's not nice to make Mommy sick!"

Claire calmly turned to him and said, "No. That would be disgusting. She would have blood everywhere."

Uh -- who would have......? what would.....? I so do not want to know what Claire was visualizing in her head!

Poolside Reflections

The girls and I were having a quiet afternoon in the pool, when the differences between boys and girls became very, very clear to me. At first we were all just calmly doing our own thing - Claire and Beth were cruising the perimeter of the pool, Katie was swimming from one side to the other, and I was lounging and reading. The change came within seconds -- the quiet sounds of gentle splashing suddenly turned to screams and squeals, the calm water of the pool began to violently splash over the sides, the very air was charged with chaos. What made this huge difference? Chris.

He is incapable of #1 - getting into the pool without a big jump and splash #2 - refraining from picking up every body in sight and tossing them around. He even threw me, which is no small feat!

It's fun, I have to admit, to have this overgrown little boy horsing around. But he can't understand why the girls get nervous when he gets near them, and we can't understand why he can't just.....leave us alone. It would be boring without at least this one boy around. But it would be quieter! ;)

On another note:

Claire is a fish. Seriously, she is just a natural swimmer. If you toss her in the pool, she immediately starts to swim. The only problem here being -- she can't actually swim with her head above the water, but man she can zip around anywhere with it undernieth.

(For the life of me, I can't remember how to spell "underneith." Does the i come first or the e??? All those years of spelling lessons down the drain!)

It is just the cutest thing to watch her go, so fearlessly, in the water! It makes us both so happy. Little Larry in her natural element. Except that she doesn't have gills. And she thinks she does.

Growing up........kind of

Yesterday, I took Katie and Beth with me to the evening mass. Afterwards, while Beth picked acorns for her "nature collection" (a plastic bag with various rotting and molding specimens from the great outdoors. This is her greatest treasure, and she always "needs" to pick up a new acorn after mass,) Katie paraphrased the homily for me. She remembered it remarkably well, and had understood the gist of it.

Afterwards, we ran to the pharmacy and then to the store, and Katie bagged the groceries while I used the self-checkout. As we left, I complimented her on the great job she did bagging (she really did!) and she replied, "Well, I was just pretending that I was on Endurance (a rip-of off Survivor for kids) and I had their music in my head."

After reflecting a moment, she said, "I think I'm becoming very grown up. I have a lot of grown-up thoughts now."

Not Everything that happens in Vegas...stays in Vegas

I'm pregnant.

Stop. Take a moment to breathe. Yes, I am pregnant.

So....let's chat for a moment. I am guessing that a lot of people will hear this news, and think, "What? These people are crazy!!! Don't they already have a baby -- a baby with a brain tumor??? Haven't they already had to make major life changes because they are already overwhelmed? Stupid, rabbit-like breeding Catholics!"

Well, here is the truth: I have moments when I am very scared. I don't know what our life is going to look like 8 months from now. We know that Abbie will need 6 weeks of radiation, but we don't know when that will be. We don't know how sick the chemo will make her, or if it will even work at all. I don't know what it will be like to have the girls in a traditional school - as the first day looms, I'm starting to wonder if we've actually just created more work for ourselves rather than less. I can't see the future, and it worries me that this baby will arrive in a time of chaos, frustration, or - dear God forbid - sorrow. I am afraid.

This, though, is also the truth: I have moments when I am filled with an absolute glowing joy, thinking of the life growing quietly inside of me. In my heart I knew that our family was not yet complete, and it is exciting and wonderful to think that our family has not yet been defined, and that we are one step closer to becoming who we were meant to be. And I can think of many, many positives this baby will bring to our family. I am excited. We are all excited, and we are all happy to have something so positive - an adorable, sweet-smelling, funny little baby- to look forward to.

So, there we are. Feel free to discuss among yourselves, I just ask that you keep the three Socratic filters in mind while you discuss my family:

• Is it True?
• Is it Useful?
• Is it Good?

(And P.S. to Carol B. -- this title was just for you!!!! :) )

The next phase

We had Abbie's oncology appointment yesterday, and they told us that they do not really expect chemotherapy to shrink the tumor at this point. We are starting a new protocol, but this is really just to buy time before we have to move to radiation. The danger of radiation is much higher in children under 3, so if we can get through this next year and a half without the tumor growing it would be best.

So she's be getting a new chemo every day for five days, and then we'll have a 28 day reprieve. Then five days of chemo again, etc. After the second round, we'll get another MRI to see if the tumor has spread. If it hasn't, then they'll put her on a regimen where she will be getting chemo every day - the initial stronger medication layered with other, less-intense, medication. If the tumor HAS grown, though, we will need to move straight to radiation regardless of her age.

The biggest danger with this chemo is her platelet count -- so we'll be monitoring that closely. And, of course, we are worried about the tumor continuing to grow. Please pray that the tumor stops growing with this new medication -- we just need to squeak through these next 18 months. I am resigned to the need for radiation, but the longer we can hold it off, the better.

Regardless of when she gets it, though, it will probably not happen here. Because of her age, they recommend that we take her to Boston, where they have some super-new radiation thing that will affect less surrounding tissue. They are guessing that it will take about 6 weeeks, so, uh, that will be an interesting juggling act. I guess we'll just temporarily move to Boston? I don't know. But I guess that's really the least of our problems right now.

Hard decisions and brave little girls

We are not going to homeschool this year.

This decision comes by many hours of anguished prayer and hard, hard thought. But with all that we have going on in this family right now, I have to be honest with myself and face my limitations as a parent, and as a homeschooler. And it's just all too much, it is something that I know I can't do well this year.

So we told Katie and Beth two days ago, and my heart was in my throat as we sat them down at the table. In the end, I couldn't compose myself, and Chris had to do all the talking. Katie was, as we knew she would be, very upset. She loves Christiana, and she loves her friends there, and she loves having me work in the nursery. But I can't tell you how proud, and amazed, and humbled I was to watch this little girl have her cry out, and then pull herself together and just.......accept the change. She hasn't whined or complained or moped since; instead this 6 year old kid has listed the positive things that will come from going to "regular school," and has talked to me about ways she'd like to stay in touch with her CHA friends.

This is a blow to Katie, no mistake. But she's handled the bad news with more grace and dignity than most adults I know, and I am so so so proud of her. What a brave kid. What a smart kid. My hope now is that in the future I can handle major change with the grace of my little redheaded daughter.


(Oh, and Beth? Her reaction was very typical Beth: "Um, okay!" and off she ran to play in her room.)

Kiss the hurt away

I have ugly knees. It's just a reality, and I am OK with it. All those years of crawling around on the floor after my children haven't really helped matters, and I now have scabby, dry, flaky knees that make pedicurists cringe in horror.

Today, Abbie was playing in the living room when she suddenly came over to me with a concerned look on her face. "Aww," she said, cocking her quirky little face at me, "boo-boo!"
And then she slowly bent down the neck that bears a red and raw scar that extends about 1/2 way up her head, and she kissed my knees.

I've gotta think that when Christ said, "The kingdom of Heaven belongs to such as these," this was exactly the sort of thing He was talking about.

Fighting Fear

So, how are we doing?

We're doing really well. We are happy and relieved to see Abbie regain her lost arm and leg strength. We are glad to be back home, glad to be back among the girls, glad to have Abbie back with them. We are hopeful, hopeful that she won't need to undergo anymore dangerous surgeries, hopeful that we may be able to avoid radiation. We are overjoyed to see Abbie laugh, and dance, and try to run.

But, as happy as we are, under all of this runs an icy stream of fear. I've found myself suddenly paranoid about all sorts of things that I never sweated before: will the girls fall off the swingset? will Katie fall off her bunk bed? will Beth fall down the stairs? will Claire bang her head on the coffee table when she (again) jumps off the couch after (again) being told not to? It's as though, having once breached the nest of protection we thought we had wrapped our children in, Danger may now swoop in at any moment, at any unexpected time.

The moment of crisis, I've found, is often the easiest. When the oncologist at Sinai showed up in the waiting room that first time to tell me that it was a miracle my baby could walk, I could almost hear the clink as my emotions shut down, as I went totally numb. This time again, standing in the neurosurgeons office, looking at the MRI images that showed a tumor much bigger than it should be, I again almost heard that clink. Almost my first reaction was to laugh. You can't be serious. This couldn't possibly be real.

It's in the time after the danger has passed that I start to panic. When things slow down, I have the leisure to think about what could have happened, how close to disaster we were. I have the time to think about all the ways things could still go bad. Chris is so good in this way, his optimism really keeps me more grounded. But, deep down, I am still afraid.

This has been a summer for tragedies, it seems. We keep hearing about so many people this summer who have lost their children in terrible, unbearable ways. And I can't help thinking, what makes me think God will spare us when He doesn't spare these others? Putting your trust in God does not mean that He will keep all pain from you.

The Saturday before Abbie's last surgery, I ran into the National Basilica (which is convieniently just down the road from Children's) for mass, and heard a homily that seemed tailor-made for me. The priest was talking about the loaves and fishes, and he said, "People often think that God does not answer their prayers. But it's just that He gives us what we need, not what we want."

I read a paraphrase of a speech Fr. Groeshel gave at the wake of little Joshua Schmiedicke, the son of FUS alumni who died in a car accident last month, and I am trying to hold onto it for my own peace. So weak of me to be so disjointed when I still have the comfort of my little one sitting in my lap. But here's some of what he said, and I am trying to keep it firmly in mind when I'm overwhelmed with my own fears:

Why does God allow this kind of suffering? Regina mentions Joshua's favorite movie was The Passion of the Christ. In that movie, we see the Blessed Mother following her Son to Calvary. And the entire time, Mary was asking Why? Why does he have to suffer? Why does he have to be scourged? Why the crown of thorns? Why the cross? Stop it, please, please stop it.


But God did not stop it. He suffered, He died. And that is his only answer to the question of why.

Do not ask God 'Why?' Ask Him 'What?' What can I do? What can be done with my life, and what should I do to gain Heaven? For Jesus also asked why, on the Cross! Therefore, if our Lord asked why, and was answered by death on the Cross, so must we suffer with the loss of earthly possession, our earthly body, and our earthly selfishness.

What having a hole in your head actually looks like

Here is my little war-veteran:




Here she is at home, the next day:

A little aside: if things continue at this rate, by the time she reaches adulthood, Abbie will be half-human, half-machine. I wonder if her surgeon would be willing to give her laser-shooting eyes, just for fun.

Home!

I am very happy to report that we are back home already! The recovery from this last surgery is much easier than the first one, and Abbie is already walking around the house. Babies are amazing!!!

We immediately saw improvement after the shunt was placed, so that most likely means that most of her symtoms were due to that, and not to the tumor growth. This is a big relief, and it will most likely mean that we'll have more options for treatment. We don't meet with oncology until next week, so I don't know for sure what they will suggest, but neurosurgy seemed to think that we will have time to try different chemos insteading needing to move to radiation or surgery to remove the tumor. Surgery, as I've said, is very dangerous, and radiation would not be much less so due to Abbie's age. So, we are very hopeful that we will be able to give a more aggressive chemotherapy regimen a try.

This is just such a roller coaster, it's difficult to catch our breath. It really does look like the tumor had not grown as much as they feared, but it's hard to feel too relieved when we know that at any moment something else might pop up to put Abbie in danger. The constant fear is exhausting. Please continue to pray for us, and most especially for Abbie, who has really been a trooper throughout this. The hosptal does not bring out the best in her manners (she routinely commands the nurses and doctors to "Go away! Shut the door!"), but despite the fact that they carved into her skull this week, she has hit the ground running. God bless her.

Home!

First Step Done

Abbie came out of surgery well on Monday. She is already awake, and there is a noticeable improvement in the use of her arms. She is fighting the doctors/nurses as they poke and prod her! :) We now have to wait a couple of days for the MRI and then determine what the next step will be.
Please continue to pray!

To Clarify

Some of the details get muddled in all of this, so here are a few points to clarify the confusion some people have expressed:

• Abbie has cancer. Because most of the tumor was removed from her spine, it is primarily now just in her brain. Actually, what she has is not a tumor at all, it is an astrocytoma. So although we keep saying "benign tumor," the reality is that it is cancerous and it is growing. "Benign" in regards to an astrocytoma just means "slow-moving" as opposed to "fast-moving" malignant.
• Abbie's mobility was improving daily. Before she began to weaken, she was climbing steps and trying to run. This Monday, I told Chris that her arms seemed weaker to me, and he told me that I was paranoid. On Tuesday, he agreed that she looked weaker, and her OT told me that she was not doing certain exercises that she had been able to do previously. By Wednesday, she was slightly shaky when she walked. By Thursday she was very unsteady. By Friday her arms hung limp at her sides and she could barely walk a foot before falling over. We were admitted to the hospital on Friday.

Feel free to ask any questions you might have, and I'll try to answer them whenever I pop in here.

Bad News

We have just received some bad news about Abbie, and I am sending out the call to yet again beg all of you for prayers.

The short version of events is that an MRI of Abbie's tumor on Thursday shows that she has a very large cyst growing above the tumor in her brain stem, and that it has grown significantly again in her upper spinal cord. There is no explanation for why this has happened -- although the tumor is cancerous, it is benign (meaning slow moving) so we have no idea how it could have spread so quickly. There are several theories, but we won't know for sure until the cyct has been drained.

On Monday Abbie will undergo another surgery, where they will remove a small piece of her skull and insert a shunt to drain the cyst. We will then monitor her closely in the next couple of days to see what the tumor does, and how her mobility improves. If neither are good, then she will need to undergo another brain surgery, to remove the tumor from her brain stem. I cannot emphasise enough how dangerous that surgery would be. It is unbearable to think about, and we aren't going to dwell on it until we know for certain if it will be necessary or not.

Please, please pray for us and most especially please pray for my sweet baby.

The brutal truth

The girls and I were talking about grandmas tonight over mac-n-cheese. We had a friend over, so while he and Chris grilled some steaks on the porch, I boiled up the good stuff for our less discerning children.

We began talking about the wine glass I was sipping out of, something I cherish very much as it came from my Grandma Niccoli. (The glass, not the wine!) They were confused to hear that I had a Grandma Niccoli, someone other than their Grandma Niccoli, and this led into a discussion about generations, marriage, the passing on of names, and, finally, nicknames. The girls sometimes refer to their grandmothers as "The Grandma who sews" and "The Grandma who doesn't sew," and as we discussed this I jokingly asked them what their kids would call me.

Not missing a beat, not missing a beat! Beth responded, "Grandma Lazy Bum."

Want to see our pictures?

So, I've been trying to figure out how to make our pictures more private, so that joe-schmo-the potential-pedophile-down-the-street can't figure out how to get my kids. Paranoid, maybe, but.....So I've created a flickr account, that, as far as I can tell, is somewhat private. At least, I think it is.

So if you'd like to see the pictures I've put up (of the house and Becky's wedding) just email me (either through my profile here, or through my regular email) and I'll send you an invitation to view the photos!

Don't be shy about emailing me, either! Mom's friends, or Christiana people, or people who I don't even know who have been praying for Abbie are all more than welcome, I just need an email. :)

Forget who rocks the cradle, she who holds the remote....

We added DVR to our cable when we moved, but it's been a bear to figure out. (DVR is like Tivo, just the generic version.) Chris has messed around with it a bit, but still doesn't quite understand all the ins and outs of getting it to work. We haven't mentioned it to the kids, though, because........well, what do they care?

The other day, I called the kids up for lunch, and then ran downstairs to get something or other. To my surprise, Franklin was paused on the t.v. When I mentioned it to the kids, Katie breezily replied, "Oh yeah, we didn't want to miss the end." Seems that not only has she discovered the DVR, she is actually the current authority on how to use it.

My management of this household is on such shaky ground it isn't even funny. Any day now I expect to wake up to find Katie in the kitchen, frying up a few eggs while she sorts the bills. And I don't know how to handle it when it happens -- do I snatch the bills out of her hand and tell her to mind her own business, or do I just pull up a chair and thank her for the egg???

happy early fourth of july!

We let the girls stay up late tonight because the fire department in our neighborhood was putting on a fireworks show. The field they use is just behind our house, sort of seperated by a field and a little line of trees, so we were guessing that we'd be able to see the fireworks from our yard.

So, around 9, we grabbed a blanket and curled up on the porch to watch the fireworks. We could see them perfectly, but were far enough away that the noise wasn't freaking the girls out, and it was just really, really nice. Surrounded by lighting bugs, cuddled up together watching the fireworks light up the field behind the trees, it was a magic that we all felt. Beth, as so often happens, summed it up best when she said, "I can't even say anything about these fireworks! It's just too amazing!"

My outdoor warrior

Chris bought a riding mower.
We really debated whether he should just start with a push mower, and see if he could do it.

Wanna guess how long it took him to mow our lawn with the riding mower? Two and a half hours.

Then he had to buy a push mower anyways, because the riding one can't handle some of the hills in our yard.

Wanna guess how long it took him to "detail" with the push mower? An hour and half.

I guess the days of just using a plug-in weed whacker are really gone. Pictures tomorrow!

Things are looking up!

At least a dozen times a day, Beth heaves a big sigh and declares, "This is the life!" It's safe to say that the girls are really enjoying our new pool, and all the fun stuff that comes with a big yard. And we are enjoying it, too, despite the fact that we are still as intimidated as all get-out everytime we poke around the flowers and bushes that are planted everywhere.

It's nice feel so at home here already. This house just feels right. There are still lots of boxes to unpack, walls to paint and pictures to hang, but everything here seems perfect. We love the train that comes by two or three times a day, the tip of it just glanced through the trees. We love the basement, cool and bright and cozy, and we love the kitchen, which is not perfect when it comes to counter space, but just begs everyone to gather together and hang out around the table.

Chris and I have taken to jumping into the pool, once the girls are tucked into bed, to swim a few laps and yesterday I took a break to hang on the side and look out over our new yard. The field behind us was literally sparkling with fireflies, and as I listened to the somehow cozy braying of our neighbors' goat (yes, I said our neighbors' goat) I pictured Beth's sunny little face and realized that she has it just right -- this is the life!

The hitchin' post

Wedding bells were ringing around here yesterday! Chris' sister spent her last morning sharing the same name as me, and it was one heck of a day. Everything was really very nice, the flowers and dresses, decorations and reception -- it was all beautiful and fun. But I've noticed that some weddings can be spot on when it comes to all the periphery - food, planning, all the bells and whistles -- and they still can't compare in any way to the ones centered around a couple who are just clearly in love and clearly eager to devote the rest of their lives to each other. There is just a special spark to everything when the priorities are right, when the priorities are on, well, getting married instead of putting on a really kicking party. The ceremony, the couple themselves, the very air that affects the kind of enjoyment the guests have are all brightened, clarified, infused with a type of beauty that is kind of like the difference in scenery on a particularly sunny day.

That being said, Dante and Becky's wedding was really beautiful. In every possible way. While watching them exchanging vows on the alter, I was - to paraphrase Anne of Green Gables - just filled with deep-down, bottom-of-the-heart gladness.

All of this joy and sunny-happy-la-la-la, though, was for Chris and I filtered through a jumble of chaos and frustration at the hands of our children. They were really pretty good, the move and the cancer and all things considered.....But..........big old sigh, it was a tough afternoon. Abbie seems to have developed a fear of crowds, my guess being that, to her, any stranger could plausibly suddenly spring some sleeping gas on her, leaving her to yet again wake up with more boo-boos that she doesn't understand. From that perspective, her behavior makes sense, but it was still frustrating. We had been so hopeful that she would be okay, that we would be able to dance and be silly as a family together, that Chris and I could have snuck in a slow dance here or there, that visiting and talking with people who are hardly ever seen but much thought of would be easy and enjoyable.........but it all was just not possible, given the uptight and cranky baby who couldn't decide what might make the evening bearable. The real killer, though, was that right as Abbie finally calmed down and realized that a wedding can be fun, right as she turned back into her sweet self and we began to enjoy ourselves, Claire flashed me a surprised look and then puked all over herself.

That was bad enough, but I actually managed to clean her up pretty well, and as we headed back into the reception room I told myself that there was no real harm done, and that we would manage to squeak through the last hour or so just fine. But - silly me - the first vomit was just a preliminary, and the second left us with no choice but to cut our losses and go home.

So, although neither of us will ever be reconciled to the fact that we missed seeing Dante and Becky off, hopefully with time all the happiness and beauty of the day will remain and the frustrations will fade somewhat, leaving us laughing at our dumb luck and the ticklish stomaches of our children that so often propel us away from social situations before we're ready to go.

And what I will really laugh about, in the future, is the tense and embarrassed conversation I had with Claire, during the gospel reading, about a foot from the priest, when she suddenly had the desperate need to discuss how much wedding cake she could have. Let's just say that #1- she was not happy with the amount of time she was going to have to endure before said cake, and #2- God was clearly not happy with her priorities, because when the much anticipated cake did come, it certainly did her no good.

Home Sweet Home

Here is a view of our new backyard, taken from the deck of our new pool! :-)

Things were finally worked out on Friday, and we moved that night. We are starting to settle in somewhat now, and you know what? Despite the pain of getting here, when the girls and I ate breakfast this morning on our deck, listening to the birds chirping and feeling a nice breeze blowing across our yard, it all seems worth it.

Abbie is doing well, she had her second dose of chemo yesterday without incident. She was well anti-nausea-drugged up, and we've had no problems yet this time. Right now we are feeling very upbeat and hopeful, and this whole mess seems absolutely manageable. Our biggest worry right now is how to work letting Abbie swim, since we don't want to have to change her dressing too often, but it needs to be changed whenever she gets wet. In the scheme of things, this is by no means a terrible problem to have. :)

Chris' sister is getting married this weekend, so our focus is shifting somewhat this week from our own insanity to hers. Another good problem! I'll update with more pictures of the house as I #1 - get the time and #2 - unpack enough to have some decent pictures. In the meantime, here's another picture of the yard, with three happy little girls about to jump into our new pool for the first time.

Timeline of Torture

Here's a rough estimate of how things have gone down with our move. Keep in mind that in between the points I list here are countless other irritations and frustrations, but to list them all would take about a week.

• May17 we put an offer in on a house. This is the day Abbie is diagnosed with a brain tumor
• May 21 - we hear from our agent that the offer has been accepted. The ball is set to begin rolling on Tuesday the 13 of June.
• Abbie's broviac surgery is scheduled for June 12. The hospital assures us that they will get us out of there in time to close on our house.
• June 12- while in the OR waiting room, we hear the the closing on our house has been cancelled. After much discussion, a new date is set for June 14, in the morning, before we close on our new house.
• June 13- the closing on our house is again cancelled. We again reschedule everything for later the next day.
• June 14 - the closing is AGAIN cancelled. At this point, our house is full of family who have come to help us move. We spend the day putzing around the half-empty house. Chris goes on the offensive, taking over for our realtor and negotiating everything himself. We are hopeful that things will be fixed by the next day, and we decide to keep the movers we hired, and ask them to hold our stuff overnight if need be.
• June 15 - Both closings are scheduled for this afternoon, after Chris literally tracks down the selling agent using the internet, and shows up at her office. He speaks to everyone involved, including the lender of the guy buying our house. He learns nothing good about our own agent. ONE HOUR before the scheduled closing on our house, it is again cancelled.
• We are now just waiting to see what happens. For now we are scheduled to close on our house tomorrow, but who really believes that? We have not heard back from the selling agent on the house we wanted to buy, so who knows if that will go through??? The movers are booked through the weekend, so if we can't move into a new house tomorrow, they will have to re-move our stuff back into our old house.
• If things do not go through tomorrow, we are not going to move at all. We will cancel both house sales, and just unpack back into our old, cramped, but now sparklingly clean townhouse.

I think we've cycled through a few of the stages of grief, landing us in "complete ambivilance to everything" with an occasional occurance of "angry enough to chew off the nose of the next person to look cross-eyed at us."

Have a good night! I'm off to lay down on our bare floor and pretend to sleep while gnashing my teeth to a fine white powder.

Baby is fine, house is a mess

This is a tough post to write because I am really, really angry. I mean seeing-red-wish-we-were-still-in-Old-Testament-times-so-that-we-could-do-some-smiting angry.

First off, though, Abbie is doing just fine!

The broviac was put in on Monday, and she was given her first chemo dose on Tuesday afternoon. The delay (from Mon to Tues) was due to the pharmacy in the hospital dragging their feet on getting the meds to us, irritating, but not a huge deal in the scheme of things. Abbie was pretty sick Tuesday night; she threw up for the first time around 8pm and didn't really stop until 5 the next morning. Once we had established that she wasn't dehydrated (I think that extra day on the IV probably helped us here,) the hospital ordered some anti-nausea meds for her, and they worked like a charm. So right now she is happily watching tv in the living room, munching on Cheerios.

It's a big relief to have the chemo start off so uneventfully, and I really wish that I could say the same for our plans to move, but......We were supposed to close on our house on Tuesday, it is now Friday and we are no nearer the end than we were a week ago. Due to some really extreme imcompetence on the part of our real estate agent, along with the stupidity of the buying agent and the evilness (oh yes, the evilness) of the selling agent, we may not move after all.

This all began with a call Chris recieved in the OR waiting room, during Abbie's surgery, and things very swiftly went downhill from there. As you might imagine they would, when your agent decides to drop a bomb on you while you are waiting for your daughter to get out of surgery. At this point, I have no idea what is going to happen; Chris is about to morph into Mad Max today and we'll see what he is able to accomplish.

My only question right now, though, is -- Does anybody know of a real estate agent who is not either incompetent or evil? Because from this vantage point, looking over the real estate landscape looks very similar to the way I imagine Hell.

Today.....

......I am so thankful for family. Uncle Mike, Colleen and Aunt Patty showed up here last night, and today they packed up the entire house in one fell swoop. And more re-enforcements are at this moment on the way to help with the unpacking!

.....I felt so guilty as I carried my sweet baby up to her crib, as she teasingly pointed out her "stinky feet," knowing that tomorrow she will be so upset to find herself back at the hospital. This poor baby, who is beginning to really recover from her last surgery, only to be hurt again tomorrow. This surgery is such a little thing, and I have been calm about it all week. But tonight, watching her giggle without any worries, it just feels like it is too much -- too much to yet again starve her all day and then end it by terrifying and hurting her. We have to do it, we would be bad parents if we didn't, but I just wish it didn't feel like we are bad parents because we do.

permissive parenting?

Abbie's PT came yesterday, just in time to witness her take a temper tantrum with gusto. She wanted to play in the exersaucer but I said, "No," because I didn't want her to be tired out before the physical therapy session. She was unhappy with this answer, and right at that minute came the knock on our door. When Abbie recognized it as the guy who had been poking her earlier in the week, she absolutely lost it.

So, at least he was able to witness her new ability to roll onto her stomach from her back (with the added enhancement of kicking legs and wailing). The best thing, though, the thing that made me almost giddy with happiness was when she slapped me.

I don't in general condone hitting around here -- in fact, I bet the girls would claim that I am pretty adamantly against it. But on Monday, when the PT was testing Abbie's arm strength, all she could do was cry, "all done! all done!" while her arm hung limply in his hands. Today, she pushed him with her other hand, twisted herself to get away from him, and then in anger flailed out at me, slapping me right on the forehead. I looked over at Chris, and the expression on his face exactly expressed how I felt.

He was smiling, almost laughing.
She slapped me!
We are so proud!

Chemo update

Monday is the day, officially. We'll go in, have the broviac inserted, and then Abbie will be given her first dose of chemotherapy. We'll be kept overnight so that they can monitor her reaction and train us in maintaining the broviac (which should get her good and angry.)

And then -- back home just in time to close on our current house, finish packing and move.

Pity Party

So, all day yesterday and today I have been doing all of the necessary address-switching and turn on/turn off-ing, ect in preparation for our move next week. Let me repeat -- I spent ALL DAY YESTERDAY AND TODAY doing this. I was laughing this morning with Chris about how I've already memorized our new address.

To find out that the real estate agent for our new house LIED about the zip code so that the house would pop up as a swankier location. So the zip code I was using ALL DAY YESTERDAY AND TODAY is wrong. Which means that I have to do it all, all over again.

I really need a drink.

Wanna see something amazing?

Behold the power of the exersaucer!!! Vanessa, I can't thank you enough for lending this to us! It wasn't in our house five minutes before Abbie was sqawking to be put in it, and she wasn't in it four seconds before she stood up and remained standing while playing with the yellow duck! The physical therapist recommended this to us, and boy! was he right. She spent a good half an hour in there (about 20 minutes longer than we've been able to get her to sit upright at one time before), and was spinning herself around by the end.

To everyone who last saw Abbie in the week following her operation -- can you believe these pictures??? I can hardly believe them myself.

Miracle? I couldn't say for sure, but from this end it's looking suspicious.

At last!

A long, long awaited event has finally taken place here ................


Katie lost her first tooth!

She has been growing her big teeth behind her stubborn baby ones for a few months now, and I was beginning to despair that they would ever come out on their own. We actually had an appointment with the dentist, where I anticipated some forced tooth removal, but we had to cancel it due to the issues with Abbie.

So I'm grateful for this, at least! She was very brave, and let Chris pull it out this morning after he realized that it was hanging on by a thread. And now we just have to wait for the tooth fairy!

So does anyone know where to buy a tooth pillow?

First appointment with PT

Abbie had her first PT session at home this morning, and it went really well. She was still pretty suspicious of the guy, but he was able to evaluate her and show me some excersises to do with her. We'll meet with him again later this week, but after testing her reflexes and watching while I tried to make her support herself on her feet some, he believes that she could be walking in a matter of weeks. I am just so happy to hear this!!! So keep up the prayers, and hopefully she'll be on the right track soon!

Oh, and for the record, I haven't been given a date yet for the broviac placement. I have a sinking feeling that it is not going to happen until next week -- just in time for our move. Hooray.

Dangerous

I've already packed away most of the girls' clothes, so it's sometimes tough to find weather-appropriate, clean, matching outfits for one or two of them. The only shorts I have for Abbie this morning are purple, so I ended up having to open a box of clothes to find a shirt to match it. After digging around in the box a bit, the only one I came up with was one with the words "I'M THE BIG SISTER" printed across the front.

The words were just the right shade of purple, and I really thought about putting it on her.

But then I really thought about putting it on her.

Matching is overrated. She can wear green.

Abbie before and after sugery

I can't get these dumb pictures in the right order, so I'll just say which are which. The picture with Abbie in a peach shirt on the phone is from the night before her surgery. The closeup of her face is 2 days post-op. The one with Beth is the same day, when we celebrated Beth's 5th bday in the hospital. The one with Abbie in a wagon is the from the day before we were discharged from the hospital. She really, really loved being pulled around in that wagon. I mean, really loved it. Chris once spent a solid two and a half hours pulling her around the hosptial!

First appt with oncology

Abbie is going to be set up with what is called a broviac in the next week or two. It's sort of like an IV line that is surgically implanted into a larger vein, so that she won't have to be re-stuck every time she goes in for chemo or has to have bloodwork done. This is pretty standard for chemo patients, and I'll be grateful to not have to hold her down anymore while people poke around her veins trying to find one that works.

So, chemo treatments start this coming week or the next, depending on when they can schedule the broviac placement. We had been hoping to have a little more time before starting all of this, but her doctor feels that it is just too risky, because the tumor is so close to her breathing and swallowing centers.

The good news is that the tumor is grade 1, and her chemo treatments are going to be on the far end of low on the spectrum. So there is a chance that she will stay healthy (and keep her hair) for the entire duration. It's one of those things that we will just have to wait and see about -- she may tolerate the medication very well, or she may get some of the side effects (nausea, lethargy, weakened immunity, hair loss). There is no way to really predict it, unfortunately.

Hopefully I'll hear today about when she'll be scheduled for the broviac. It is considered a surgery, and we may need to be admitted for a day so that they can train us on maintaining it, etc. We'll see. The PA mentioned being admitted several times, but the actual doctor didn't seem to think it was a given.

In case you haven't heard....

- Two weeks ago, Abbie was diagnosed with a benign fibrillary astrocytoma (probably spelled wrong). It is a tumor that reaches from her brain stem down into her spine.
-We were admitted immediately to Children's National Hospital in DC, where we were told that she needed surgery to at least biopsy the tumor, and remove as much of it as was possible.
-The tumor is actually embedded in her spinal cord, so it was likely that she would sustain major damage from surgery.
-She was operated on on a Friday, and 80% of the tumor was removed, without any major damage. The unofficial word was that it was benign.
-Her arms and trunk are very weak, but functioning, after surgery. It is going to take some physical therapy, but she will eventually regain everything back.
-We are home now, and resting, and glad to be out of the hospital! (Although, everyone there was really incredible.)
-She will need chemotherapy to shrink the tumor that remains in her brain, but it will be on an out-patient basis, and the chemo will be low-dose. It shouldn't take more than a year.

Busy couple of weeks. Keep us in your prayers!

Am I that cranky?

Note left for me from Katie:

I love you no matter what you do I still love you

love, Katie

It's been a busy time

Well! I am sorry about the long break I took from this blog, but I have some very good reasons.

Reason #1 -

Chris and Dante, with some help from Dan, put in a beautiful new wood (laminate) floor in our living room! It is absolutely gorgeous, and it somehow magically makes the rest of the house look much nicer, too. (That may also be due, in part, to the frantic cleaning, purging, and packing I've been doing, though.)

Reason #2

We have been extremely, almost obsessively, preoccupied with the little nest of hatchling on our deck. We monitored the mommy robin while she laid an egg a day for four days, and then stalked her (through the glass door) throughout the two weeks it took her to hatch her little birdies. The four baby birds have just begun to grow feathers now, and they chirp impatiently with open beaks while they wait to be fed. The girls have named them after Katie's current Narnia obsession: Peter, Susan, Edmund, and Lucy.

Reason #3

Our house is for sale! Actually, it is almost sold!!!! I don't want to count our chickens before they're hatched (appropriate analogy, given our current bird-watching), but we have a buyer and we are very close to closing the contract. :-) If this goes through, our house will have been on the market a mere day and a half!

And Reason #4, which is the most serious and least positive is this:

Abbie has had a very seriously strained neck for going on three months, and we've been running her all over town to figure out what the deal is. In the meantime, she has been getting worse and worse -- at this point, she can barely move her head from side to side, and she won't move her head up at all. So she is walking around with hunched shoulders, her chin close to her chest.

She has an MRI next week, which will hopefully provide us with some answers. So please say a prayer for her!

So, things are looking to continue on in this hectic way for quite a while, but I promise to try and update this more often. :)

Oh, and the fish?

They're dead.