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!!!